The Hank Chronicles

The Difficulty of a Rare Disease

2012-02-29T12:03:00.001-08:00

Imagine if you were told you have a rare disease. One that is so uncommon that there isn't much information about it. Suppose the doctor tells you to go home and "Google it" because that is where he is getting his information! What if he told you that there is no cure and the cause of the disease is unknown. Now imagine it is your child that has been given the diagnosis!

30 million Americans have had this happen and 50% of them are children. Seems like a big number...but when you consider there are nearly 7,000 rare diseases..the number of people with a specific disease drops. Being told your child has a rare disease is mind-numbing. Being told that they don't know the cause and there is no cure is terrifying. And watching your child suffer while you stand helplessly by, throws you into a black void.

Hank and his siblings standing together in support of all those with PRS and other rare diseases!

Hank has Parry Romberg Syndrome. A disease that causes "hemi-facial" atrophy and neurological issues. In essence, it causes half the face to "waste" away. It can cause seizures, migraines, bone loss, blindness, tooth loss, migraines, ADD, ADHD and strokes. With less than 1,000 cases worldwide...it is extremely rare.
When Hank was diagnosed in 2008, my family spent hours upon hours, searching the Internet for help, calling doctors, talking to friends...looking for someone who knew something! It was a horrifying and lonely time. Knowing that our 7 year old's face was changing...that his cheek was nothing but skin and bones...was the scariest time of our lives.

Hank's Dad wearing green for Hank!

Being the parent of a child with a rare disease can be isolating. No one else can really understand what you are going through. As hard as it is for us to accept what is going on...I have found it is harder for other people. When people ask what the prognosis is...we answer, "I don't know." When they get a confused look on their face, we respond..."No one knows." It's a hard concept to understand...in this day and age of modern medicine...why don't we know? Even now, with Hank...he has had three surgeries, and is doing well...and when people ask how he is...I say "fine". But when they ask if he will need more surgeries...I don't know! That's the thing...I don't know! I wish I did...but I have no idea...I am seeing changes in his face...he needs a surgery...will he need another one after that? I don't know! I hate not knowing!

PRS mom and friend, Milly, shows her green and her support!

Today is Rare Disease Day 2012. Rare Disease Day is about raising awareness worldwide of the common challenges and experiences faced by rare disease patients and their families. It is a day of talking about rare diseases...about getting it out in the open. It's about raising awareness...and acceptance for those suffering with a rare disease. It is about research...and generating interest and funds for research.

Having a diagnosis of Parry Romberg Syndrome is difficult...because no two cases are alike! I can't compare Hank to another child...because I don't know if their symptoms will be the same. Some have tissue involvement...some have tissue and bone. Does Hank have bone involvement?...I don't know! And trying to figure out why they all have PRS...it is a never-ending puzzle...some have similar experiences prior to the on-set of symptoms...all little clues...but we need someone to put it all together!

I am passionate about raising awareness for Parry Romberg Syndrome, in hopes of a cure...and in knowing the cause! We are so fortunate to have the Internet and places to connect online, like "The Romberg Connection." I am grateful for the other families, like mine, who are doing what they can to figure this disease out, to share information, to search for treatment and to support one another.

Green is Hank's favorite color. In honor of Hank and Rare Disease Day, we ask people to wear green today. Talk about this today with your family and friends. Share about this day with your coworkers and go online and look at the Rare Disease Day website. It's only through education and sharing information, will we make a difference!
"Alone we are rare...together we are strong."

You can support Rare Disease Day 2012 with just one click! Go to the RDD US site and click on the "Raise Your Hand" icon in the center of the page! By raising your hand, you have just shown your support for the 30 million Americans who are affected by rare diseases. Thanks to you, Lundbeck will donate $1 to rare disease research!
Click here www.rarediseaseday.us

Changes?

2012-02-26T20:36:00.000-08:00

It's Sunday afternoon, and Hank has been making me laugh all day. I love the weekends with these kids. Life seems to be so easy and carefree when we are living in the moment!

Hank and his siblings Christmas 2011

2012 is well under way and time seems to be accelerating! So much has been going on, as with any busy family...but my involvement with Parry Romberg Syndrome continues to be a daily presence in my life.
Hank is doing well. He had some school issues in the fall, which seem to be resolved. He is happy and growing like a weed! He made Honor Roll last term and we had a wonderful Christmas and New Years with family!

I worry about Hank...he doesn't want any more surgeries and at 10 1/2, he voices his opinion. It was almost easier when he was younger...he didn't know what to expect and he didn't really say much about it. But now? Well, he really wants to just move forward and he is not looking back. I hate to tell him that he needs another surgery. I was hoping that he didn't...even though his surgeon, after looking at photos said he would need a procedure this summer...I hoped he was mistaken...

But today...UGH...Today, I saw Hank across the store...and as he walked up to talk to his Dad, I was startled to see that his face has changed a bit. I've been noticing the changes...but they are so subtle, and I see him every day... Sometimes I think he looks perfect....and other times...like today...I just don't know!
Is it because he is growing? Or is it something else...Has the flap "slipped" a little? I do think he has some bone involvement, as his smile is a little more crooked...but I love that smile...! And Hank's eye looks a little droopy...I know it needs work...but do we wait until he goes through puberty or do we address it now? I don't want to wait until it's too late...but how late is too late? So many unanswered questions... That is what happens with a rare disease of unknown origins...unanswered questions...

But even with my worries and concerns...I know, without a doubt, that we chose the right course of treatment for Hank. I can't even imagine what his life would be like right now, if we hadn't done the surgeries. Back when he was first diagnosed, I couldn't even imagine we would ever be where we are now and Hank would be the funny, confident, kind, handsome and energetic boy he is now! Although the surgery is not considered a "cure", it was the only chance we had to stop the progression...and with no other symptoms, things seem to be just as they should be.

Although Hank doesn't want to look back...he does want to help others. He has no problem talking to people about his PRS. We have been fortunate to be able to connect with other families with PRS and Hank willingly takes part. In November, I was contacted by a man who lives just two hours away. He was coming from his 5 year old son's appointment, where he had been diagnosed with Parry Romberg Syndrome. He was overcome with grief with the knowledge that the doctors they met with hadn't seen a case of PRS in 25 years. Feeling lost and needing to connect with someone who understood, I am happy to report that they found Hank and I! We talked for quite awhile and his wife was able to conference with us as well. I shared as much information as I could with them and listened to their son's story. I recounted Hank's story and surgeries...which are always emotional for me...and we shed tears together. I told them that since they lived so close, that we should meet when they are ready. I wanted them to see Hank and see how well he is doing...to have hope that there is "the other side" of all this.

The next morning, I saw that an email had come in at an early hour. "Are you available to meet? ...We will come to you." I quickly wrote back, "Of course!" This was a first for us and we were excited by the prospect of meeting someone who lives so close by! By 1:00 we were sitting at my kitchen table. Hank came in to meet them. He patiently let them look at his face. We talked about his surgery and he even graciously showed them the scar on his back. We compared pictures and talked about treatment options. But more than anything, I think we were able to give them some comfort and let them know they are not alone!

This is not an easy path we are on. I try to stay positive and look at how far we've come in all this. I don't dwell on Hank's condition...I know he doesn't! His resolve and strength never cease to amaze me and I try to follow his lead. We are so lucky to have this little family of ours...so much joy and happiness in every day and laughter too!

We are so grateful for all that has been done for Hank...from his surgeries, to the support of other mothers of children with PRS, from friends and family and strangers too! This is defintitely not the life I would have chosen for my child...but it is the life we were handed and we embrace it willingly (what other choice do we have, right?)...being able to raise awareness in hopes of a cure...being the moral support for those going through it...and referring people to Hank's brilliant surgeon...

We have a possible lead on some research starting to isolate the cause of PRS. If it comes to fruition, Hank will be a part of it. I don't want to say too much now...but am keeping my fingers crossed that it will happen! Please cross your fingers, too!

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Wednesday, February 29, 2012 is Rare Disease Day. In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. Parry Romberg Syndrome is thought to affect less than 1,000 people in the US. Now that is rare! According to the National Institutes of Health (NIH), there are approximately 6,800 rare diseases...and while each one is rare...together they affect nearly 30 million Americans...or almost 1 in 10 people, 50% of them are children!

This year, we want to help raise awareness for rare diseases...and call attention to the fact that much research is needed for treatment. Please join our family and friends in supporting Hank by wearing GREEN on Wednesday February 29th. Green is Hank's favorite color and he would love to know that there is a sea of green out there, just for him! "Alone we are rare. Together we are strong."

When It Is More Than Just Words...

2011-11-21T20:58:00.000-08:00

It's Saturday night, and Hank and I are sitting next to each other on separate laptops. I'm writing and he is playing games. It's late...almost 11:00 pm. I know I should chase him off to bed...but the easy conversation we have while he waits for games to load...the sounds of him having fun...and just having him near me, are just too good to end.

Hank is 10 now...approaching that "tween" time of his life. But thankfully, he is a young 10. Still loves being with Mom and Dad. Happy to give us hugs and to just "be". Still enjoys family time...like a bike ride to the park with the whole family, including our oldest "child", Maverick the dog. I wish I could slow time down, so I can savor these moments. I know that these are our "good old days" and I want to enjoy every moment!

Hank is such a kind soul. He finds the good in everything and everyone. It is rare that he is sullen, or negative. I love picking the kids up from school and hearing about their days. It's noisy in the car as they all start talking at once, with little Lucy yelling to be heard above her older brothers. Hank almost always has positive things to say. Oh sure, he has his moments and if he doesn't like something, he'll tell me. "Mom, while standing in line for 4 square, the yard-duty teacher told us to be quiet!" I should say, he tells me the easy stuff. The stuff that really bothers him or he thinks will upset me...he holds in.

So in the quiet time in his room before bed a couple of weeks ago, Hank finally let it all out. In relaxed conversation he told me. "Mom, I'm being pushed around at school." My heart sank...I knew that there had been an incident in September...and that there were a few more in October...but didn't realize it was still going on. "Have you told a teacher?" I asked him. "No, I can't..." he said, "I'll get in trouble. This kid always turns it around on me, so I get in trouble!" I hate this. Hank is smaller than a lot of the other boys in his class. Hank is 10...there are a lot of 11 year-olds in his grade. Hank seems like an easy target. Easy-going, doesn't tattle, non-confrontational, and really can't imagine someone being mean on purpose. But now, after so many weeks, he was at his breaking point.

"It happens almost every day, Mom," he told me, "It's always behind the backs of our friends and the teachers." "Is it on purpose?" I asked. "I used to think it was because he didn't want me to be friends with another kid, but now I just don't know." Do you ever tell him to stop? I asked. "I have and he tells me to 'Shut-up!'" As the smoke started to billow out my ears, and my eyes glazed over to red, I willed myself to remain calm. Seriously? Can't this kid of mine catch a break? I felt so bad for Hank. He likes this boy. We've had him to our house! He's not a bad kid...but was obviously making some bad choices.

I told Hank I would talk to his teacher and we would go from there. The next morning, I told Hank's teacher about it and asked her to keep an eye out. She said she would and I left feeling confident that Hank would have a good day.

I picked Hank up from school and the first words out of his mouth..."Mom! He pushed me again!" This time it had taken place at the lunch area. The boy had come up behind Hank and pushed him forward. Sneaky! This kid was being sneaky! Right there, with teachers present, but while they weren't looking his way. To say I was upset is an understatement...I picked up the phone the minute we got home and called the Vice-Principal, only to find she wasn't in. The secretary suggested I email her, but I wanted to talk to someone!

I told Jeff about it when he got home from work. His brow furrowed and his lips disappeared into a white line. The vein in his temple started to pulse and I knew that he was trying not to blow. He talked to Hank about standing up for himself and defending himself. Hank has had three years of karate. He knows WHAT to do...he just doesn't want to do it. (I don't blame him)

I stewed about things the rest of the evening. What do we do? Finally I posted the question on Facebook. With over 400 FB friends, I figured someone would have lived through this situation. The responses came swiftly. Some with knee-jerk advice and others with solid, plan-of-action advice. It stirred them up...and talking about it with them helped me work through the process, and gave me some good information.

In bed that night, I tossed and turned. What do we do? I certainly didn't want to make the other boy's life difficult, but Hank shouldn't have to go to school and worry if he is going to be shoved. And what if he gets pushed hard, trips and falls? We don't want him to injure his face. Or what if Hank takes it and takes it...and then finally blows? We don't need him getting in a fist fight. I finally closed my eyes and put it all in God's hands, fitfully sleeping until early morning.

When I got up, I knew what we would do. I wrote his teacher an email. I explained that it had happened again and we were very upset. I got her response before I left for school. She said she would take care of it, feeling frustrated that it was going on and wasn't being caught. She planned to talk to the boy in question and make him see how his actions affect others.

I got the kids to school and went off to chapel to listen to Lucy's class sing in honor of Veteran's Day. They were so darling, singing their hearts out to "Proud to be an American". It was a tear-jerker! After she was done, I stayed and listened to the kids sing. There is something so special about hearing 5-7 year olds raise their voices to Christ in song. It has been known to bring tears to my eyes. As I sat there wondering how Hank was doing, my phone rang. It was the school! "Oh no," I thought, "something has happened to Hank!" I answered the phone and heard Hank's voice on the other end. My mouth went dry and I could feel the tears starting to well up in my eyes. "Mom?" he asked..I responded and waited to hear what terrible thing had happened. "Could you bring me my library book and my music? I forgot them." Phew! He was OK! He was just forgetful! I was already to his classroom by the time he finished telling me. I told him to turn around and he saw me. We hung up and I told him I would bring everything back for him.

He gave me a quick hug and headed back into the classroom. His teacher stepped out and we had a few more words about the situation. As she headed back inside, Hank came bursting out the door. He looked at me with tears in his eyes, "I want to go home, Mom." What? Why? "I need to go home, please take me with you," he said as the tears flowed. He was melting down...stressed beyond anything I had seen in a long time. He told me his head hurt, his stomach hurt and he "just couldn't take it." The bad thing when Hank cries...I cry. So there we were, out in the hallway and in tears. "He's not worth our tears," I told him, "You have to stay...because if you leave then he has won." "Don't worry, you don't have to do anything. Your teacher is going to take care of it." He nodded and hugged me. The kindergarten class who are the "reading buddies" with Hank's 5th grade class had arrived. "Your reading buddy needs you, you can't leave, Hank." "OK," he said and wiped his tears away.

Another hug and he went back into the classroom, leaving me there feeling wrung-out like an old dishcloth...emotionally drained and extremely worried about him.

I went about my day, with Hank in my thoughts. I brought him his library book and was so happy to run into his cousin Zachary at school. Zack is in 8th grade. He is big for his age...at least 6 ft tall and the size of a football player. He is big...really big compared to a 5th grader. He already knew Hank was having trouble, so he went up and gave Hank a hug. He put his arm around Hank's shoulder and walked him down the hall. "Everything good Hank?" he asked, "Is anyone bothering you at school?" It was a beautiful sight! Now everyone knew that Hank has a big cousin.

I was back at the school at pick-up. I didn't get the chance to talk to Hank's teacher and waited on pins and needles to see how the day went. Hank burst out of the band room like he does every day, with a smile on his face and a loud, "Hi Mom!" I waited until we got to the car to ask how his day went. "Great!" Did your teacher talk to you. "Yes, she said I can come and talk to her any time!" he said with a grin. And did anyone push you today? "Nope! He apologized!" he happily offered. I felt relief wash over me.

Now there was just one thing left to do...run by the principal's office and make her aware of the situation, so it can be documented. I wanted a written record of what had happened, in case there is another incident. We talked for quite some time and she told me she would take care of it.
I am grateful to Hank's teacher for taking it seriously and dealing with it swiftly. And I grateful to the teacher who saw the very first incident, not knowing if it was horseplay or something bad. She brought it to my attention, allowing me to ask Hank about it and finding out it was going on.

The boy in question came up to me the other day..."Hank and I have worked everything out!" he told me. "Thank you, I appreciate it," I replied, and gave him a smile. Hank told me he is happy. That he doesn't think it will happen anymore. And if it does, he said he will remind his friend that he apologized! "That should take care of it, Mom!"

Even Innocent Comments Can Hurt...

2011-11-06T17:02:00.000-08:00

Are we halfway through the Fall already? Really? Summer is gone...school has started...Halloween is already over...Hank has turned 10... Hank is 10? Already? With three kids and a busy schedule, time seems to be flying by!

Camping July 2011

Although Hank's surgeon, Dr. Siebert, told me he thought Hank could use another surgery, Jeff and I decided to postpone and let Hank have a normal summer at home, without any medical interventions. It was so nice! The kids took swimming lessons, where Hank moved on to the more advanced strokes and worked on diving. (Thank you Sophia!) Hank learned to ride a bike...something we never pushed...we didn't want him to fall on his FACE, after all! But he just took off with hardly any help and therefore received a new bike for his birthday.
We took the kids camping for the first time and Hank loved it. Hiking, boating, jet skis, roasting marshmallows, eating outside...the kid adored it. And except for a few glitches...24 loud college students who partied until 3am right next to our campsite...and a dead car battery...it was great! (Let me tell you...at 3 am, I am not nice...at all! Those college kids RAN to bed!)

Lazy days of summer with nothing to do, were just what Hank needed. Huge family reunion with so many family members we hadn't seen in a long time.. day trips with friends, baseball games and a trip down to see their Granny who treated the family to Legoland made it a summer to remember! It brought such joy to my heart to see Hank have fun and not have the worry of surgery hanging over him.

A few short years ago, Hank was diagnosed with Parry Romberg Syndrome...and time slowed to a crawl...an agonizing desperate crawl as we tried to find treatment. The days melted together as went from doctor to doctor, and I spent every waking moment trawling the Internet for information. Hank looked puny...he was tired of all the doctors and we were keeping his condition a secret until we could figure things out. It was terrible...

Right before 1st trip to NYC: Hank 7, Charlie 4, Lucy 3.

Lucy and Charlie were little...just 3 and 4...and weren't getting the attention they deserved. The housework stopped, I don't remember cooking...Jeff had to shoulder it all. I remember coming out of the office one day and looking around the family room...it was a mess. I looked at Jeff and apologized for letting everything fall apart. He looked at me and said, "Don't worry about this stuff...I've got it. You just keep doing what you are doing. Find help." And so I did.

Now here we are, three years later...Hank is a different kid. Outgoing, in the band, playing sports, doing great in school... the trauma of the last few years hasn't left us unscathed...We have suffered financially...lost our home, miscarriage, Jeff had to take on another job... but we are in recovery...as a family...and as with everything else we've been through, we do it together.

1st day of 5th grade.

Hank isn't out of the woods...by any means. This is a progressive disease...and each case is different. But the progression on his face has stopped (as far as we can tell). July 2, 2009 was the day that our lives changed...the day Hank had his life-changing surgery. Now two years later he is good.

Hank is a constant worry to me. Not at the forefront of my mind, like it was in the beginning...but still right there, where I think about it pretty much every day. I don't just worry about his physical health...but his emotional well-being...he's been through so much! Hank doesn't talk about it very often...he reflects on things, but doesn't usually bring it up. Until a few days ago, that is...

I was with Hank in the bathroom, putting gel in his hair, to get the desired "spikes" in front. As Hank looked in the mirror, he asked, "Do I look weird in the mirror?" I froze. "What?" I asked. Again he said, "Do I look weird in the mirror?" My heart dropped to my feet. "Why do you ask?" I inquired. He stared at himself for a moment..."A boy at school told me that I look weird in the mirror." UGH! I hate this! The truth is, Hank DOES look different in the mirror. When you look at someone with PRS through a mirror, they look odd. Not symmetrical at all...even with having surgery. Everything is pronounced and the differences are obvious. (two dimensional world) I know it, Jeff knows it, our family members all know about it... but I was hoping we could go a few years before Hank noticed. OK, I was really hoping he would NEVER notice!

Homecoming game Oct. 2011

I had to say something but the words seemed stuck in my throat. Hank continued to scrutinize himself in the mirror. The seconds ticked by as I gathered my thoughts. Finally, I took a breath and said, "You don't look weird in the mirror, Hank. You look different...but not weird. What you see in the mirror is not how the rest of the world sees you. It's not what I see when I look at you straight on." I continued to explain how people with PRS never look quite right in the mirror and how doctors use mirrors to diagnose. Hank continued looking at himself in the mirror as he absorbed what I said.

Slowly, he turned to face me. "Then I don't know what I really look like." Double UGH! I could feel my heart breaking. "No, no..." I said, "You have pictures and videos. That is what you look like to me." As we stood there together, I said, "You know, Dr. Siebert wants to fix things, so that you won't look so different." "OK," he said, "Wait a minute! How would he fix it? With SURGERY?" I nodded. "NOW?" he asked in a worried voice. "No, not now...maybe in the summer." I reassured him. "Ohhhh...how about in TWO summers?" he said with a slight grin. Gotta love this kid!

Halloween 2011

A friend remarked the other day," People will say 'Kids don't have filters' or 'kids will be kids, etc...' A child at school must control themselves physically: if they hit, push, etc...they'll be sent to the office and a note will be sent home. Why can't they be taught or disciplined when they hurt others with their tongue (words?) It truly can do more damage than any push or shove can."

I agree with this...Kids should be taught that if you don't have something positive, kind or encouraging to say, then don't say anything at all. Hank knows this boy didn't say what he said to be cruel. But the damage is done, just the same. Maybe the reason kids do this, is because their parents do it too. Do we, as adults (me included) do the same thing? Do we point out other's flaws and shortcomings? To their face...or behind their back? Either way, words can hurt, they can scar...and the receiver of these words sometimes carry them for the rest of their lives. We should encourage each other and lift each other up with our words, not tear each other down.

I know Hank's road won't be easy...physically or emotionally. But his road would be a little less bumpy...if people would just let Hank...be Hank.

In Honor of Christopher

2011-06-28T13:06:00.000-07:00

Life is so fragile. Last Friday, Charlie's little friend, Christopher passed away. He was just 7 years old.
Loved baseball, the color red, reading, rules, hunting and camping. He wanted to be a firefighter, just like his dad. He was a great big brother and wonderful son. Christopher was at a pool party for his baseball team...and in a terrible instant, he drowned.

Our lives are forever and irrevocably changed. Nothing is as it was. Our hearts are broken. And our pain, as great as it is, is nothing compared to what his parents, grandparents, sister and extended family are going through. Their pain is immeasurable...unfathomable...the greatest loss there is...

I could write about Hank today...I have so much to catch up on...but all I can think about is Christopher and his family. So in honor of Christopher Walters, I am dedicating this blog to him.

Yesterday, I took the kids to Christopher's funeral. I had a lot of misgivings about it. The kids are so young and we haven't talked a lot about death. Well, that's not quite true. My Dad passed away when Hank was almost two. So we talk about Grandpa being in heaven. About how much I miss him and how he watches over us. But we haven't been faced with someone close to them dying, let alone a child. I can barely come to terms with it...how could I expect them to?

Charlie insisted he go. Lucy, ever the champion of her brother, insisted she be at his side. But Hank...Hank who understands the finality of death, did not want to go. I struggled with what was the best thing to do. Would they be traumatized? Would they be scared? Would they understand? I knew that I would go, no matter what. I knew that Christopher's family needed all the support they could get and I needed to say goodbye. Earlier in the week, I spoke with Christopher's mother, Amy, on the phone. She asked if we would be there. How could I let her down?

The night before the funeral, I knew what we would do. I sat all three kids down and told them that we would be attending Christopher's funeral as a family...(without Jeff, as he had to go to work) Death is a part of living and as Catholics, comforting the sorrowful is one of the "spiritual works of mercy"... Not only that, but Charlie needed to go to support his friend, Christopher and say goodbye. Lucy and Hank needed to support their brother in his time of sorrow. And Hank in particular needed to take all the kindness and support that has been shown to him each time he undergoes surgery, and pay it forward. With big eyes, they nodded in agreement.

Christopher's favorite color was red. The family asked that every child wear the uniform in which they knew Christopher or wear the color red...some would wear baseball uniforms, some would be cub scouts...our kids would wear their school uniforms and in honor of Christopher, would wear their red polo shirts. Lucy wore a red dress and I wore the red shirt I purchased the night before.

The services were an hour and a half away...in the beautiful foothills of Amador County. Another classmate of Christopher's and his family met us at 9:00 am and together we formed a caravan. It seemed like a long trip to me, as I anticipated the enormity of the day. I said a prayer for Christopher and his family. And another one for all the families on their way. Please Lord...get us through this day.

Christopher's dad is a firefighter and a military man, who served two tours in Afghanistan. I knew that they would have a lot of support from both communities, but I never imagined just how much. The parking lot had firetrucks, motorcycles, and highway patrol cars. As we walked up to the church, we were greeted with the sight of about 20 veterans holding American flags, it was an honor guard and it set the tone for this little boy's memorial.

The lobby held tables filled with Christopher's beloved toys and treasures. Star Wars toys, stuffed animals, baseball things and pictures he drew. Everything a 7 year old boy loves...seeing things sucked the breath right out of me and I could not contain my grief. I heard the heartfelt gasps of the other mothers standing with me and we hung on to each other in disbelief and sorrow

Inside, was a sea of red shirts. At the front of the church was an open casket where dear little Christopher was laid out for people to pay their last respects. Christopher's parents, Rob and Amy stood next to their son and greeted those who came up. The line to see them was long and Charlie insisted we go up. I was worried...this was an open casket. I hadn't anticipated this. But Charlie said he was OK and got in line. As we got up to the front, I tried to shield Charlie from the casket, but he pushed his way next to me and said, "Hi Christopher. I miss you." He then turned to Amy and hugged her, telling her, "I am so sorry about Christopher." As I hugged Amy, Charlie hugged Rob. I have only seen Rob at school a few times and although I don't know him like I know Amy, I hugged him and we held on tight through the tears. I have never experienced a father's sorrow like that.

We found some seats and the other parents, children, our school's principal, administrators and teachers sat all around us. It was a huge showing of support and love from Christopher's school...all in red...all in tears...so much grief. Christopher's funeral was amazing...beautiful and gut-wrenching. I have never shed so many tears and have never seen such an outpouring of grief. Over 600 mourners attended...there were hundreds of firefighters, military personnel, Highway patrol officers, medical people...etc, all wearing their dress uniforms. The seats were taken up by the 500 in attendance and the men and women in uniform lined the walls. Standing in support of their brother, Rob and his dear family. You could see that they shared in his anguish, as the tears flowed down the faces of these strong and brave men and women.

Halfway through the service, Hank and Charlie went out to the lobby to use the bathroom. "Dad is here," said Charlie upon his return. I was so surprised and grateful! Jeff was at work when we left. But he finished up his meetings and made the trip up. We happened to have an empty seat next to us so I told Charlie to go out and bring his Dad back. I looked up to see Jeff, wearing a red polo shirt that I had never seen before, walking across the church. I later found out he stopped at a Kmart and purchased the shirt on his way to the funeral.

Jeff sat down and Charlie nestled into his side, comforted by the presence of his Dad...at a time when he really needed him. Charlie seemed to be doing OK....even when Christopher's parents got up to talk about their son. They laughed as they told stories and sobbed when the talked of their loss. I looked at Jeff who had tears in his eyes. I glanced at the Dad behind him who looked the same. These fathers, who were feeling Rob's grief as their own. Understanding with empathy, what Rob was feeling...and realizing that they could not fathom his loss.

As the services came to a close, they played a video of Christopher's life. Charlie crawled into my lap as he sobbed at the images of his friend. Looking at the places they went together on field trips, seeing Christopher in Halloween costumes and a video of him playing and singing in the bathtub with his little sister, the night before he died. So many memories and such tragedy at the realization that his friend was gone from this life. There was not a dry eye in that room. The sounds of laughter through tears at funny pictures, and the sharp intake of breath at heart wrenching photos. I could hear the sounds of my friends' sorrow as they sat behind me...Sobs and sniffles...this boy touched so many.

As we left the church, we were ushered by Christopher's casket, for a last goodbye and a hug for the family. All three of our kids sadly went up say farewell. I think this part hit Hank the hardest...seeing someone in a casket can be scary...and Hank is at the age where he over thinks a lot. But he was stoic and compassionate as he hugged Amy and Rob.

Outside, the preparations were made to transport Christopher to the cemetery. All of the uniformed men and women were lined up on either side of the stairs, leading up to the church. The honor guard was standing in a line with their flags, facing the church. The boy scouts in their uniforms were lined up next to them and a bright, shiny red fire truck acted as the hearse, to give Christopher one last ride. Above our heads, the medivac helicopter that transported Christopher to the hospital last week, kept vigil in the air.

As we stood in the hot sun, waiting for them to bring the casket out, I looked around at all the mourners. Red rimmed eyes, red shirts, people of all ages...I realized that Christopher had affected more people in his short 7 years than most people do in a lifetime. What an amazing little boy and we are so much better for knowing him.

The haunting notes of bagpipes snapped me back to reality as the bagpipers marched out of the church. Behind them came the pallbearers carrying a small red casket, draped with an American Flag. Christopher was being carried by his father, his grandfathers and three other uniformed men. The officers at the bottom of the stairs snapped their white-gloved hands into a salute and kept their hands at the brim of their caps as the casket was carried by. They lifted the casket up and into the back of the fire engine and secured it in place as the motorcycles got in position to lead the procession.

The kids and I got in the car to join the procession, as Jeff made his way back to his car, to return to work. Hundreds of cars got in line as we went the nine miles to the cemetery. All traffic was stopped as we traversed the winding roads. Each intersection was blocked by police, highway patrol, fire or ambulance. All with lights flashing and the officers and attendants standing at attention and saluting as we passed. The medical helicopter was joined by a military helicopter and together they led the way. My heart leaped into my throat each time we passed an intersection...this was the most beautiful and heart-rendering procession we had ever seen.

At the cemetery, we were handed red balloons. We stood in the shade of the huge oak trees as the rest of the mourners arrived. There was an awning set up with chairs for the family and the platform for the casket was set up, all waiting for Christopher's arrival. The uniformed men and women lined up, making an aisle for Christopher. The bagpipes led the way followed by the pallbearers and then the family...all in red. It reminded me of the police funerals you see on TV.

As we gathered for the service to start, we could hear the far off beating of a helicopter's rotors. The sound grew closer and louder... everyone looked up just as a large military helicopter roared into view over the tops of the trees. It was low and as it reached us, it soared upwards, right over where we were standing. One last tribute for Christopher...the boy who's dream was to ride in a Blackhawk helicopter, just like his Daddy. As the helicopter disappeared from view the minister asked us to join him in singing "Amazing Grace". Then he read some scripture and said a prayer. Afterwards, they asked us all to move into the open area and release the red balloons. Hundreds of red balloons took to the sky, making their way to the heavens for Christopher. Some balloons got caught up in giant oak tree...eventually breaking free and joining the rest.
They thanked everyone for coming and said we could make our way back to the church for the reception.

Charlie found his school pal, Colby and together they sat on a bench under the oak tree. Colby's mom and I talked and before we knew it, everyone had left...but the family. We stood away from them...to give them some privacy. The kids played in the dirt around the oak tree...and Colby's mom, Hank and I sat on the bench, watching in silence as they opened the casket for one final goodbye. The love of these parents...to say goodbye...it's the greatest anguish I have ever witnessed. Their hearts are broken...they will never get over this...And yet they must go on for their little 4 year old daughter.

We stayed as they closed the casket and lowered it into the ground. We stayed while they brought in the concrete slab that covers the crypt. We stayed while they brought in the backhoe and all the dirt. We stayed while they shoveled the dirt on the crypt and filled up the hole. We stayed while they rolled the sod back into place. And we stayed while little Alexis in her red dress and red headband, stooped down and placed flowers on her big brother's grave. We couldn't say goodbye...we didn't want to...but finally we tore ourselves away...

The ride home was difficult. I felt exhausted and drained. But I knew that what I felt was nothing compared to Christopher's family. This was the start of their new reality...a reality that no one wanted nor deserved. I heard from quite a few people when I got home. Other parents who attended the services, wanting to talk about the experience we just shared. Others who couldn't make it, but joined us in prayer, knowing how difficult the day would be. And still others who didn't even know Christopher, but who's hearts ached with sympathy for his family and friends.

Today has been rainy and cold. The kids and I stayed home, huddled in our pajamas. Throughout the day, Lucy has mentioned Christopher and Charlie is worried about Amy and Rob. Hank has been quiet and thoughtful, spending much of his time alone. We are still mourning...and will be for a long, long time.

Christopher, thank you for allowing us to share in your life. You're an old soul, who had wisdom beyond his years. The love that you had for your mom and dad was so obvious as was the joy you brought to them and your sister. Our lives have been blessed to know you and our hearts are broken because you are gone. Heaven is so lucky to have you. We will miss you...always.

To find out how you can honor Christopher's memory or how you can help the Walters family, please visit http://www.christophersmemorial.org/

Finally...an Update!!

2011-02-06T08:34:00.001-08:00

It's been such a long time since I have updated this blog! Where has the time gone? I have sat down many times and started to write, but seems like there is always an interruption, and my post goes unpublished.

The last 6 months have been a bit overwhelming with everything going on in our lives...so here I sit, early in the day on Superbowl Sunday...everyone still asleep and I have some quiet time to myself. Hank. Hank is doing really good! He is in 4th grade and loving it. He is so responsible and always wanting to help around the house. He got straight A's last semester and went on the Principal's List. Physically, he looks good. Of course, I can tell that he has had surgery and he isn't "perfect"...(well, he will always be perfect to me...)...He has complained recently of his ears ringing and "floaters" in front of his eyes (one time)...and I feel the flutter of panic..."Is this another symptom? Is he OK? What doctor do we go to for this?" But all in all, Hank's progress has been remarkable. We are so grateful to Dr. John Siebert for all he is done for Hank. He has changed his life! And all of ours too! I can actually say, that although I think about Hank's Parry Romberg every single day....it is no longer the first thing I think about when I wake up.

I have every intention of sitting down and writing about our time in Connecticut, New York, the return home, the start of school and the changes we have endured over the last six months....but for today, I thought I would be fun to insert the article that Fox News published about Hank on July 30, 2010. Hank was interviewed while in New York City...it is exciting and somewhat surreal to see our family in a news story! The entire article and slideshow are available for viewing on FoxNews.com.

Health Centers
Boy, 9, Fights Face-Wasting Disease
By Brian Donnelly
Published July 30, 2010
FoxNews.com

Terri Gibbs couldn't fathom what was happening to her son Hank as she held her hands on either side of his face one night in 2008. One side was full and the other was literally skin and bone.
Hank was asleep, but Terri's eyes had just been opened to the possibility that, what began in 2006 as a rash on the left side of his face, two years later was distorting his eye, cheek and other facial features – something none of their doctors or specialists caught.
“We’d go to church and I'd cry,” said the mother of three from Sacramento, Calif. “I'd look at him sideways and cry."

Terri knew what was different about Hank, but she didn’t know why until the next night when the latest dermatologist they had consulted finally got it right. The Gibbs family had their diagnosis, but it wasn’t any cause for celebration.
Hank, who was 7 at the time, was diagnosed with Parry Romberg’s Syndrome, a rare disease that causes the area from the hair line to the jaw on one side of the face – usually the left - to literally waste away due to severe atrophy. The cause is unknown and there is no cure, but it is believed to be an autoimmune disease.
"Parry Romberg Syndrome classically involves the atrophy, or the wasting away, of the fat of one side of the face… It can have profound effects on the overlying skin and skeletal growth… And all of the associated structures then are distorted," said Dr. John W. Siebert, professor of surgery at the University of Wisconsin and an attending surgeon at Lenox Hill Hospital in Manhattan, N.Y., who has performed three operations on Hank to restore the left side of his face.

Parry Romberg is believed to affect people before the age of 20, but Siebert has had a patient as old as 69 who had no sign of the disease until their 50s. If allowed to progress, it can also affect the bone, which can then distort the features on the affected half of the face. Although it’s progressive, it doesn’t spread beyond the face.
Hank, who is now 9, has some involvement in the bones around his eye and upper jaw. But the effects are painfully visible on the overlying skin. Although it typically affects just one side of the face, “For that individual patient, it's obviously 100 percent involvement,” Siebert said.
Siebert told FoxNews.com that, classically, surgeons wait until the patient’s tissue has completely wasted away and they have been stable for two years before they go to reconstruct. But Siebert favors early intervention because, he said, the earlier the onset of the disease, the greater the negative effects on skeletal growth become. If the disease is allowed to progress, the bone can become corkscrewed and very small compared to the unaffected side of the face, which continues to grow normally.
Although Hank didn’t know much more than what it had done to his face, neither Terri nor their forward thinking surgeon was willing to wait and see how it would progress, considering the disease’s usual destructive pattern.

“Hank wasn't severe. He was probably moderate,” said Siebert, who Terri heard of from a contact she made through the Parry Romberg Connection website, a support network that helps connect individuals and families affected by the highly underreported disease. “We intervened while we had active disease in hopes of arresting the progression.”
The Gibbs family flew out for the first surgery on July 2, 2009, which was done at the NYU Medical Center, where Siebert ran the microsurgery program for many years before resigning. Siebert transferred fat from under Hank's shoulder to replenish his face, which had slowly been deteriorating for about two years.

Hank then had two revision surgeries, which take just one hour and is usually on an out-patient basis, compared to the six to eight hours that the first surgery takes. Siebert moved the fat around to match the other side of the face as best he could – but the result is never perfect. Siebert makes his patients promise they will have at least one revision to make their overall result better. Hank went in for his first revision in December 2009, and the latest on July 20.

"For the kids, I liken the whole thing to Build-A-Bear," Siebert said. “Their skin is deflated and what it needs is to have living stuffing to bring it back out to its normal shape and form.”
Siebert, who says he has seen more than 400 Parry Romberg patients and done hundreds of microsurgical free tissue transfers, takes that “living stuffing” - tissue - from another body part. Using a skin flap, he places it in the affected area and attaches the blood vessels.
“You hook it up to a little artery and vein in the face and then you sculpt what they're missing underneath the skin… And it's just like building a teddy bear.”
The use of living tissue dramatically improves the blood supply in that region and, after surgery, that side of the face is not only plumper than the unaffected side, it is firmer and ages better, Siebert said.

“So far, it's been one year and there has been no further atrophy,” said Terri, who was grateful to have found someone with the answers she had searched so long and hard for.
Although the first surgery was a success, Hank was still just 8 and didn’t really know why he needed to “change his face.”
“When Hank first had that first surgery, he looked at me and said, 'did you just not like my face before?' That crushed me,” she said. “Because I thought he got it. I thought he had realized what was going to happen. He didn't understand why we would change his face. And so that was a really hard thing for him; and it was hard for me.”

Once they left the hospital and went home, Terri showed Hank pictures of people with Parry Romberg who didn’t have surgery, and she said he never questioned it again.
One year, three surgeries and 18,000 miles later, Hank is out of the hospital and feeling good. Yet, he still doesn’t really understand why he needed a second revision surgery.
“The problem is I’m pickier than any patient. If it's not dead on, than I’ll usually subtly, not twist their arm, but tell them they could be improved,” said Siebert, adding that most patients have one revision.
Otherwise, Hank is happy to be with his mother Terri, his father Jeff and his two younger siblings, Charlie and Lucy as they make their way back to Sacramento. On their way, they have visited the Bronx Zoo, the Empire State Building and the family of another Parry Romber Patient who helped them make the decision to go with the tissue transfer surgery.
“If you ask Hank, he'll tell you, ‘I used to have Parry Romberg Syndrome.’ So he considers himself cured,” Terri said.
Before his last revision surgery, Hank gave a presentation to his classmates about what Parry Romberg Syndrome is.

To prepare him for that, Terri interviewed him and asked, “Are you mad at God?”
Hank said, “No. Sometimes I wonder 'Why me? Why not some other kid?' But I wouldn’t want another kid to have this. I know God has a plan for all of us, and this is just his plan for me,'” Terri said.
Visit Helping Hands for Hank to learn more about Hank's story and how you can help.

We are so grateful that Fox News took an interest in Hank's story and has helped raise awareness for Parry Romberg Syndrome! Here is a link to the slide show that accompanies the article.
http://www.foxnews.com/slideshow/health/2010/07/29/wasting-away-year-old-boy-suffers-rare-disease/#slide=1

In honor of Dr. Siebert who is from Wisconsin, we will root for the Green Bay Packers today...GO PACK!!

First Week of Recovery

2010-07-27T19:23:00.000-07:00

It's been one week since Hank's surgery and I am exhausted. So tired that I fell asleep in a taxi today! Imagine...flying through traffic, horns honking, brakes squealing...and there Lucy and I were...sacked out in the backseat! Luckily Jeff and the boys were awake and we made it safely to our destination.

Hank's first week of recovery has been crazy! Restful at first...for him anyway...and then on the go! I have started to update the blog almost every night...but I was either interrupted or so tired that the writing was incoherent...I finally gave up! But things have calmed down and I can finally write!

The morning after surgery, we took Hank to Dr. Siebert's office to get the much-hated drain in his head, removed. Hank was so relieved to get that "pipe" out of his head. It inhibited his movement and would hurt when snagged on something. (which is why you aren't supposed to remove the dressing...)

Denise and her mom, Elisa, were there, as Denise had just got her drain removed as well. It was fun to see them and there were hugs all around. Denise looked great! She had been diligent about icing her face and there was minimal bruising. Both Denise and Hank had swollen eyes...making them look like they had been in the same street fight. So amazing for them to be together and meet!

We took up the whole waiting room and lobby as we stood together for pictures. Dee, Dr. Siebert's receptionist, happily took photos of us as we commemorated our joyous meeting. Because Parry Romberg Syndrome is so rare, when you meet someone with it, it is very exciting!

We finally tore ourselves away from each other in the hope that we would meet up in Central Park. Our plan was to get there, but the kids were starving. We ducked into a small cafe and crammed ourselves into a booth. After a good lunch, we headed towards Central Park. We suggested going back to the hotel to rest, but Hank was set on showing Lucy and Charlie the Central Park Zoo.

With map in hand, Hank was our tour guide, taking us all over the zoo. The kids stood in front of the seal tank and cracked up each time a seal would glide by. We saw everything from polar bears to penguins, lemurs and monkeys. Dr. Siebert told Hank he was not allowed to run or jump yet...so Hank kept us at a steady "walking" pace! The kids loved the rainforest's habitat. It had beautiful plant life, exotic birds, reptiles and bats...and it was hot...and humid...horribly humid...downright stifling! As if the NYC air outside wasn't hot enough, our kids wanted to spend a bunch of time there...no matter how sweaty it was. I stayed in hoping I could sweat a few pounds off...

As we departed the zoo, we stopped in the "Zoovenir" shop, where the kids negotiated a purchase. I love watching the kids shop...I give them an amount they can spend and they really "shop". They have to look at every single thing and Hank has figured out he can split the money and get two small things or one bigger thing. They ended up with 2 little stuffed animals each, which was a great buy...considering they have been playing with them non-stop.

We left the zoo and made our way through Central Park, heading for the southern end, where we were sure we would catch a taxi with no problems. But first it was time for us to rest with an ice cream bar from the cart. I had to remind myself that Hank had just had surgery YESTERDAY! Clearly, when looking at him, it was obvious...bloody stitches, swollen eye, bruising...but his energy and his attitude...amazing! He was having fun and enjoying himself. I know he wasn't entirely comfortable and was sore...but as usual, he didn't complain.

We made it to 5th Avenue and Central Park South, near the Plaza Hotel. Traffic was heavy and there were taxis everywhere! And not one of them would stop for us! So we walked....and we walked...and we walked...finally found a Starbuck's and regrouped...figuring out if we should bother to find a taxi or continue hoofing it. While we walked, we saw a movie being shot and stopped to watch...but there were not big stars in it, so we moved on. It was hot and it was a long walk...but we did it...we walked to Toys R Us. The kids probably would have griped more if the destination had been different...but who can complain when you are going to a big huge fun toy store and have money to spend? We had finally made it, but not after going through some questionable areas...
The toy store was fun. I accompanied Lucy and Charlie on the Ferris wheel, while Jeff and Hank checked out the Lego's. Each kid was given a budget and Charlie had a good idea about what he wanted. He checked out the Lego's and then headed for the video games where he found the perfect DS game that was under budget. Lucy grabbed me by the hand to check out all the "girl stuff" and Hank dragged Jeff and Charlie around as he looked at every single toy that he liked in his price range. Lucy did the same...pulling me towards the Barbies and stuffed animals and then back to the Barbies and on to the Little Ponies. What started out as a fun little excursion to keep the kids occupied, turned into an ordeal as the little shoppers grew more and more indecisive, trying to get the best thing for the best deal. As we gave them the 5 minute warning, they finally made their choices and skipped and danced their way to the check out. With their packages in hand, we grabbed a cab and headed back to the room, so that the kids could play with their toys and relax.

Thursday dawned bright and early....well, the day dawned early...we did not! After a nice relaxing night, we continued the theme by sleeping in and just taking it easy and playing in the room. When we finally did venture out, we headed to the Empire State Building, since Lucy and Charlie had not seen it yet.

We took the Imax-type ride that they show prior to the tour. It's the kind of ride that makes you feel like you are flying over the city, but you never leave your seat. Kids loved it! So did I...but I have to admit it was a little bit of a stomach churner... The beauty of the Imax, is that you can bypass all the long lines to get up to the observation area. So in no time..we found ourselves on the 86th floor, where the wind really blows. The kids loved it, especially when we found a viewing area with low block walls, where the kids could actually see the view.

The top of the Empire State Building means more to me than just the view. Sixteen months ago, we flew to NYC for the first time, to see Dr. Siebert.

During that trip, Jeff and I took Hank to the top of the Empire Building. It was so amazing and Hank was very excited. It was a heartbreaking time and we knew the road ahead would be difficult...so to do something joyous was important. When I look back at that trip and all it meant to us...finally finding treatment for Hank! I didn't know then, if we would ever get to where we are now! I have two photos of Hank, taken at the observation deck. One from the first trip and one from this trip. They are both cute photos...and Hank looks happy in both. But to me there is a huge difference, they are before and after photos...one sick..one recovering. These are the photos that I love... the reason we are here.

After we got our fill of the view, we headed for the line to get down. It was huge! Jeff took the boys to the bathroom as Lucy and I stood in line. But the line was actually pretty fast as I had to let people go ahead of us, so we could hold a place for the boys. I checked the time on my cell phone and saw a text message from Jeff, "You and Lucy go on down & we'll catch up." Great! why didn't I see that earlier? At that moment the attendant directed us to the "Fast track" lane. What a lucky break, I thought. And we sped through the line...to the STAIRS! Seriously, we were on the 86th floor! But once in the stairwell, there was no turning back. We got down to the 80th floor and then sent onto the elevators. Whew! We met Jeff and the boys at the bottom and headed out to our next adventure: Little Italy and Chinatown.

We walked our way down to Little Italy and had a great dinner on Mulberry Street, at an outdoor table. One kid did the usual spilling of the drinks, and we felt right at home. I love Little Italy, you kind of forget you are in a big city...until you look down the street and see the Empire State Building in the distance!

After dinner, we walked down to Chinatown where we found a large park with a play area. Charlie and Lucy begged to go play and off they went. Jeff and I found a step to sit on to watch and Hank sat down too. "I better not play," he said, "Dr. Siebert said no running or jumping." Ohhh... he was right...but still...kind of sad. But he sat and played on his DS with no complaints.

Charlie and Lucy had a ball and we finally sent Hank to round them up and give them their 5 minute warning. Hank stood looking at the equipment with longing on his face. "Go ahead Hank," we told him, "Just check out the equipment. Walk on it." He face brightened..."OK, I will just walk." And so he did...of course we had to stop him from hanging upside down, but other than that he was very careful...not wanting to ruin what had been done...and more importantly not wanting to have another surgery! So we let them have their fun and then caught the first taxi back to the hotel for a much earned rest!

Friday morning, we headed back to Dr. Siebert's office for the removal of the stitches above Hank's eye and a post-surgery check-up. Dr. Siebert closely examined Hank's face and said that he was healing beautifully. Of course we know that the bruising will continue and may even be in different locations as he heals...but the swelling was down and everything was looking as it should.

Dr. Siebert expertly removed each stitch and Hank bravely sat through it. He hates getting stitches out...it usually hurts and feels weird. Fortunately, Lisa the nurse who works with Dr. Siebert, had come out earlier and put some Lidocaine on Hank's stitches, so the area was sort of numb.

Afterwards, we discussed what comes next....what happens when we get home? Do we just send photos, are there more surgeries on the next horizon. The hard part is that this disease is so unknown and each case is so different. Dr. Siebert said he would like to see Hank once a year...so I guess our summer trips will always include a doctor's visit. As for surgery...the hope is that we can wait to do anything else for a few years...maybe even waiting until puberty. That would be great...for Hank to have a break and just be a kid for awhile!

I am feeling cautiously optimistic...I don't want to assume anything and I don't want to get my hopes up too much. I know each case is different and some kids only have 2 or 3 surgeries and some have 7 or 8! It will depend on how Hank grows and how severe his case is...did it affect the bones? Hate to have it be a "wait and see"...but at least we have gotten this far...Hank looks good...feels good and is presumably healthy! He won't ever look exactly like he did before the ravages of Parry Romberg Syndrome started...but no one is perfectly symmetrical...we just want to give him a chance to have some normalcy.

I appreciate that Dr. Siebert is so candid. That he takes the time to discuss things...our hopes and our fears. I think that's rare in a lot of doctors...we always feel better after seeing Dr. Siebert...like we have some sort of plan! We have gone from panic mode to survival mode...now we move into recovery mode! This is good! Really good!

But even though Hank is doing well...what about all the other parents who find themselves in our shoes? Or the adults living with PRS? Who will take on the fight with the insurance industry who considers the surgeries, more often than not, to be cosmetic, and not covered? And what about raising awareness for research? Who will fight for grants to aid in research? And who will fundraise to help other families get the help that we got for Hank? So although our personal fight is going well...I see that we are not done. That we will continue to do what we can to raise awareness for PRS!

We said our goodbyes to Dr. Siebert and headed back to our hotel to catch our ride to Connecticut. Four days with Kyle and his family...a much anticipated trip! To spend time with people who have been where we are! What a gift! We packed our stuff and loaded into the van...but with all that we did in Connecticut...that story deserves it's own entry! Stay tuned...

Third Surgery's a Charm...

2010-07-20T19:12:00.000-07:00

Today was Hank's surgery day. I'm beat! Not enough sleep...emotionally drained...and ecstatic at the prospect that this might be the last surgery for awhile!

The day started early for us...4:45am. And since I went to bed after 3am, there wasn't a lot of sleep involved. We decided that we might as well let Charlie and Lucy sleep in, since all they would be doing is sitting in the waiting room all morning, and Jeff could bring them up to the hospital when Hank was in recovery.

We got Hank up at 5:40, in preparation to his 6am hospital appointment. We gave Jeff hugs, grabbed our bags and went out to hail a cab. Now, normally, I am very prepared for these surges....but for some reason...this time I didn't bring anything! No paperwork, no directions, I didn't even have the address for the hospital with me! Far cry from a year ago. It's becoming routine I guess. I did learn that there is more than one Lenox Hospital in NYC. One is on E. 77th Street...we went to that one...not the right one....The one that we needed is also known as Manhattan Ear, Nose and Throat Hospital, or Lenox Hill Hospital and is on E. 64th Street between 2nd and 3rd. So we were a little late getting to the right place...

As we pulled up to the curb, I saw two familiar faces, Elisa and her daughter Denise, who was scheduled for surgery right after Hank. Denise has Parry Romberg Syndrome and has had two surgeries by Dr. Siebert. Her mother and I connected through "The Romberg Connection" and communicate all the time. I knew that they would be in New York, and yet I found myself surprised to see them. As our cab came to a stop, I threw open the door and yelled, "Elisa!" She turned around and with a big smile we hugged. Denise hugged Hank and then we traded. we were all so excited! We walked in to the hospital together and had a chance to visit before we were called in to registrar. Hank's surgery was Dr. Siebert's first surgery of the day and Denise would follow as the second surgery. It sounded like they were having the same surgery, which I found to be a comfort.

We took some photos and then Hank was called in to register. After filling out the proper paperwork, we were escorted to the locker area, where Hank's vitals were taken and he was given some very comfortable-looking pajamas and warm socks to wear. I was also handed my very stylish and well-made blue coveralls to wear into the operating room. After Hank changed, we moved up to the third floor where all the operating rooms are. We sat in the waiting area, which is a place where patients sit in recliners, separated by curtains and wait for their surgeons to say hi and go into surgery. Dr. Siebert came over, dressed in his scrubs to say hello and take one last look at Hank prior to surgery. Dr. Gingrich, who was Hank's anesthesiologist during the last surgery came over to say speak with us. Hank remembered him and I was excited to find out that he would be Hank's doctor again. He was so good with Hank, really understands kids!

It seemed like just a few minutes and then Dr. Gingrich and the surgical nurse walked us into the operating room. Hank walked in an climbed up on the table. No fear...he laid down as the doctor put the EKG sensor things on his chest. They covered him with a blanket as I held his hand. Dr. Gingrich handed Hank the mask that the anesthesia comes through. He had Hank just hold it near his face. I noticed Hank was shaking and asked if he was cold. "No mom, I'm fine," he responded. But still he trembled...and then it dawned on me! He was trembling because he was afraid. Poor little guy. But just as I realized it, he started to go under. And then he was sleeping. I gave him a kiss and told him I love him. Dr. Gingrich told me not to worry and they'd see me soon. The nurse walked me out...and as I got to the door I stopped and I turned around. And I looked. I looked at my little boy...who's been through this twice already...and I didn't worry, I didn't cry...I could see he was in good hands...and I turned and walked out the door. (besides, I got all my crying out LAST night!) Dr. Siebert was right there and ready to go. He gave me a high-five and hug and told me not to worry. (so I really didn't...I wondered, but I did not worry)

I went to the surgical waiting room and texted Jeff to let him know the schedule. And then I waited. I went online and let everyone know Hank was in surgery. And then I waited some more. Got some coffee...waited a bit longer...and after an hour and a half, Dr. Siebert was there with arms raised in triumph. "He did great!" he exclaimed. I leaped out of my seat, so surprised to see him so soon. Dr. Siebert sat down and I took my seat next to him. He explained what he did, and how he did more than he initially thought he would. And then he told me about the dreaded drain. "No...not the drain!" I said in dismay, "Hank hates the drain!" "I know," he chuckled and went on to tell me that it is a smaller drain than the last one, and that he would take it out the next day.

Dr. Siebert has such an easy manner...you would never know he is a surgeon...he just seems like a regular guy, and yet he is this brilliant and kind surgeon! He jumped up and said, "Want to see him?" I said yes, and he grabbed my bag and led me across the recovery room floor to the last bed, where Hank was. He had an oxygen mask on and an ice pack on his cheek, making him look worse than he was. He was bruised, but I could tell what had been done and knew the outcome would be great!

Dr. Siebert was joined by Dr. Gingrich and they hung out for a few minutes discussing how Hank did and what to expect as he recovers. Then they were off for Denise's surgery, with the promise that I would see them later. The recovery room nurse, Dawn, introduced herself and brought me a recliner. She explained that she had put ice on Hank's face for swelling and that she had the oxygen mask on him while he sleeps. I texted Jeff to let him know that Hank was out of surgery and sleeping. He wrote back that they were in the lobby.

I texted Jeff a few more times, but never heard back. What I didn't know at the time, was that Jeff was sitting with Denise's mom, Elisa and Dr. Siebert was out there talking to both of them! So as Hank slept, I asked Dawn to watch him while I ran downstairs to get Jeff and to watch Lucy and Charlie. She told me to just bring everyone back up. Lucy and Charlie could wait in the surgical waiting room while Jeff and I sat with Hank. Hank finally started to show signs of waking up. A little foot movement, an eye flutter and all of a sudden he was sitting straight up with his eyes wide open! It was a bit startling! Jeff told Hank to take it easy and lay down. Dawn came running over and said, "It's OK let's just lie down." Hank looked bewildered for a few moments and kept trying to sit up. He had a gauze bandage on his head and his hands kept flying up to his head to feel it. He didn't know what it was, just that there was something strange on his head. Hank was upset. And when Hank is upset, I am upset. But I couldn't let him know, and so I tried to calm him and let him relax. Dawn gave him something for his pain, that made him drowsy, so he calmed down and rested. I went in to check on Lucy and Charlie and soon Jeff came in to tell me that Hank was ready to go downstairs.

We followed Hank as he rode downstairs in a recliner and settled in a small discharge room. The nurses gave him juice and crackers and then Hank passed out again. Jeff took the little kids to lunch and I stayed with Hank, watching him sleep and taking pictures.

A few hours later, Hank was discharged and we were heading out the door, with Hank shuffling along. We found Elisa in the waiting room, waiting for Denise to come out of recovery. As we stood together talking, Dr. Gingrich and Dr. Siebert walked in. We got a chance to visit and talk once more before all three kids started whining to eat. Hank told Dr. Siebert that he didn't like the bandage on his head, so Dr. Siebert leaned aside and told us we can take it off.

We said our goodbyes and walked out to the street for a cab. We got back to the hotel and the first thing Jeff did was to take off the gauze on Hank's head. Hank was unhappy to see the drain or "pipe" as he calls it. It is uncomfortable and unwieldy. But he was very relieved to have the gauze come off. As soon as the gauze came off, Hank was hungry and wolfed down two big pieces of pizza and some rootbeer. He played with his Legos for awhile and then the rest of the day settled down on the couch and watched kids shows.

Every so often, Hank would wimper or cry out. If the tubing for the drain gets pulled, then it is uncomfortable. Towards the end of the evening, Hank wanted to get up and use the bathroom. As he tried to get up, the tubing snagged on something and called out for me to help him. I got it fixed, but as I looked at the tears in his eyes, my heart felt squeezed. This is tough. I'm tough...Hank is tough...Jeff is tough...we are all tough...but often in this process it just feels too much. We are in survival mode...just get Hank through this. Each day will get better and having the tube out will make a huge difference.

There is no looking back. This is worth it, and we wouldn't do anything different. Hank is sleeping and I can now look at him without him knowing. He is bruised and a little bloody. But I can see what the end result will be...and it will be great! Tomorrow will be a better day...drain out and maybe some walking around. And then rest...for all of us!

Night Before Surgery: Round 3

2010-07-19T20:30:00.000-07:00

It's the night before Hank's surgery and everyone is asleep. I thought I would sit down and quickly give an update. But as I reflect on the day, the knowledge of what lies ahead for us in the morning is overwhelming. As usual, I go into these surgeries very level-headed and positive. But if given a moment to dwell on it...my heart is heavy for Hank and all that he has endured and will endure tomorrow and as he recovers. He is so sweet and fearless...and how I wish he did not have to go into another operating room. This surgery is a little more involved than I had thought...and I know the end result will be great...but the anxiety and apprehension I feel...well, I am just glad they are asleep and can't see it. Tomorrow I will be stoic and brave...just like Hank. But tonight, I don't feel that way.

We have now been on the east coast for one week. We've done a lot in this week. We've traveled by air, train and auto...we've seen some amazing sights, traveled 5 states and we've visited a slew of relatives!

Our time in Delaware with Jeff's Grandma Dot went by much too fast. But we had a nice visit with her and got to see a lot of the family. On Saturday morning her Pastor, Johnny Woods, came over to pray over Hank. Pastor Woods is a big man and when he laid his hands on either side of Hank's head, we couldn't see Hank anymore! He started praying and it was truly beautiful. As he prayed for healing, I found myself crying...Grandma Dot was too! I don't know why...except that I was so grateful that this man would take time out of his busy life to come over and pray for a boy he doesn't even know. After he was done, he asked for a pen. The next thing I knew he was handing Hank his Bible. And not just any Bible but the actual Bible he uses to preach with. The one with passages underlined and highlighted. In it he had written an inscription to Hank, along with his phone numbers. He told Hank he wanted him to read it, and "You can call me anytime". What a gift! One Hank will always have.

That night, we got together with Jeff's uncle and his wife and his cousin and her family, as well as Grandma Dot. We had a good time and a lot of laughs. They are a lively bunch! It was fun for our kids to meet their 3rd cousins. Wish we had more time with them...just as they all warmed up to each other, it was time to go!

The next morning was Sunday...departure day. We had a nice breakfast out with Grandma Dot and then found a church for Mass. We had a little trouble finding the right entrance doors, as every door we tried was locked. Made us think the churches are really harsh in Delaware...they lock the doors if you are late! But we finally found the right doors and made it inside. After mass, we asked the priest to give Hank a blessing, as he's having surgery in a few days. The priest said of course, and said he would give him the "anointing of the sick" sacrament. And so Fr. Mac anointed Hank...taking down his name and church. i gave him one of our Helping Hands cards and he promised to pray for Hank, especially on Tuesday.

We finally packed up and hit the road. It was an eventful trip, passing through the rest of Delaware and across New Jersey. Love how the highway is tree-lined in New Jersey. Very beautiful, although it does make me think that New Jersey is hiding something!! We got to Manhattan, only to find that our mapquest map was completely worthless, telling us to turn on streets that would clearly send us the wrong way. So with a very tiny street map in hand, I navigated Jeff towards our hotel. Jeff handled that minivan like it was a New York City cab! At one point I found myself saying, Get out of our way, tourist! And then remembered that I am a tourist and we are driving around in a minivan with Tennessee plates!

We made it to the hotel, Jeff returned the minivan and then we got a bite to eat. It was business as usual, as one kid didn't like the food, the other two couldn't get enough, the air conditioning was so high that we were all freezing and then one of them knocked a whole glass of water into Jeff's lap. Good times...!

Today we slept in a little and then headed over to see Dr. Siebert, Hank's surgeon, for the pre-op appointment. As always, it is so good to see Dr. Siebert. He instantly relaxes us, just with his presence. He sat and looked at Hank for a minute. He reached out and pressed on Hank's cheek...asked him to smile..and continued to examine him. We talked about the area above Hank's lip and his eye. I asked if this was atrophy from PRS or did the fat from the last surgery get absorbed? He said he was sure that it was not atrophy, but rather, the edge of the flap he did in December. It is the way it is supposed to be but he would take a look at it. He explained the procedure and said it would be great! I know he's right...And I am eager to know for sure, if the progression of the disease has been stopped. I think Hank could use a surgical break after this. And I am looking for the peace of mind that all is alright.

We went out to lunch after that and then hit FAO Schwartz. The kids each picked out a little toy...Legos for the boys, a stuffed animal for Lucy...which kept them busy for the rest of the day!
I found out another PRS family was in town and their 1o year old daughter had surgery today. Since the mom and I have talked numerous times on the phone, I called her and told her we are here too! I grabbed Jeff and the kids and we hiked the ten blocks to their hotel and had a great visit. It was nice for Jeff to talk to another father.. We didn't get to meet the little girl...she was still out of it from the surgery. But we were excited to meet the parents and we left them of promises to stay in touch.

After that we headed down to Hank's favorite NYC eatery, Jr.'s. It's in the theater district and we all love it. The kids clowned around during dinner and amused the other diners. We have gone to Jr's each time we've been in NY. And each surgical visit, we have been waited on by the same waiter! Of course he wouldn't remember, he must wait on hundreds of people a night. We had such a good time with him, finding him so funny as he teased Jeff about me being the boss... We told him why we are in New York and Hank now has a new friend!

We ended the night at Times Square. The kids love all the bright lights and you can't go to NYC and not see Times Square! But it was late...even Toys R Us was closed, and we were tired, so we grabbed a taxi and headed back to the hotel. The kids were up late and getting them up in the morning should be a real treat. But we have to be at the hospital at 6:00 am...with surgery scheduled for 7:30am. We will wait until the last possible second to wake Hank up. He can't eat or drink, so the later the better. Looking at the clock...looks like I will get a little over two hours sleep. Doesn't matter, I don't think I can sleep anyway...the anticipation it just too great. I know he's in good hands....I just don't like the waiting. Praying this is the last surgery for a long time...that Hank can get back to a normal life for awhile. Just being a kid and doing the things he likes..and continuing to raise awareness for Parry Romberg Syndrome...but as a survivor... not a sufferer.

Hank Meets the Press!

2010-07-16T20:02:00.000-07:00

I have been trying to sit down and write for the better part of two months. And tonight is the first time that I feel I can! We are in Dover Delaware, visiting with Jeff’s Grandma Dot, before we head up to NYC for Hank’s pre-op appointment and surgery. Everyone is sleeping and here in the quiet, I can finally think and write. For the longest time it felt like July 20th was so far away…and now it’s almost here!

The last two months have been crazy. End of year school parties and field trips, Hank’s 6-year-old brother Charlie, graduated Kindergarten, Hank turned 9, Jeff’s birthday, Father’s Day, A SF Giants game to celebrate Jeff and Hank's birthdays, fundraisers, swim lessons, Lucy's very first dance recital and I think every boy in Hank’s class had a birthday party in June! By the time July 4th rolled around, we were exhausted!

We had two recent fundraisers: On June 26th, we had a dinner and auction at a local bar. We had a rough start, with the place not set up for us, but our friends all rolled up their sleeves and really got the place put together. The food was great, the auctioneer, even better and I think everyone had a good time. And more importantly, we raised some PRS awareness as well as some good money for Hank.

July 10th was the date for the next fundraiser…just two days prior to our leaving for the East Coast. The days leading up to it were high stress, as I tried to manage swim lessons, day camp, shopping for the trip, making arrangements, packing, etc. Not to mention keeping emotions in check as the reality of the why we were going started to sink in. The organizer of the event, Phyllis Enos, did a remarkable job. She had bounce houses, a BBQ, dunk tank, and about 20 vendors there! It was remarkable!! Not only did she put it all together, she also contacted the news agencies and got them interested.

And so the (mild) media frenzy began and Hank was in the middle of it! He handled it all with a cool, calm and collected manner...so old beyond his years. I, on the other hand was faced with the realization that news cameras were coming into my home. My home that had been turned into "trip Central", meaning the washer and dryer going constantly ....couches draped with clothes that needed to be packed, suitcases out, and utter chaos reigning. And because it all happened so quickly...1:00 phone call for a 3:30 interview...I barely had time to comb my hair before the reporter showed up!

But all went well and we were so pleased with the first story. We had two news stations come out prior to the fundraiser and both were different and equally great! We were also interviewed by the Sacramento Bee and in the Sunday newspaper ran a really good article about Hank, Parry Romberg Syndrome and our quest to raise awareness and search for a cure. It was accompanied by a beautiful photo of Hank, and he was so excited to see himself in the paper.

Here is the first story, which ran Thursday, July 8, 2010 on Fox Channel 40. Reporter, Chris Biele, did an awesome job! Thank you Chris!

The second story was done the next night by Cornell Barnard of News Channel 10. I had even less time to prepare (did I even comb my hair?) but the outcome was really great! They interviewed Hank really well...brought tears to my eyes! I can't seem to get the code on this to work, but will post when I figure it out. Here is the link:

http://www.news10.net/video/default.aspx?bctid=111304901001

A story was also published in the newspaper. It was really well written by a reporter named Miranda Simon. She did an excellent job and the photo of Hank was beautiful. The story ran in the Sunday edition of the Sacramento Bee, so we know a lot of people saw it! Hank is so proud, and yet a little shy about all the attention. But he handles it all with grace and maturity and I am proud of him.
http://www.sacbee.com/2010/07/11/2882462/boy-8-receives-widespread-support.html

Monday, I got an email from Fox News in NYC. They would like to do a story on Hank while we are there. We have plans to meet them Monday and then before Hank's surgery on Tuesday. They might even follow him into surgery. From what I understand, the story will be packaged and then sent to the major affiliates. So it might be shown in LA too! This is very exciting, as it might just be shown nationwide and be just another step forward in raising awareness and perhaps catching the attention of someone who wants to research this disease and search for a cure.

So here we are in Delaware, after spending the last few days in Washington DC. When we planned this trip, Jeff and I talked about coming to see his Grandma in Delaware. After three trips to the east coast we still hadn't had an opportunity to see her. And she had never met Hank, Charlie or Lucy. We wanted to make this trip different for Hank. To make it more than just flying to NY for surgery. Jeff's mom graciously offered to finance the first leg of this trip and here we are! We are so grateful!

We flew out to DC on the red-eye Monday night. Brave or foolish...not sure which we were...but the kids did great! Although I did feel bad for the unfortunate teenager seated next to us when I realized Lucy had her feet all over him as she slept! And then there were the people who brought their CATS with them...causing Jeff to suffer from his allergies, the entire flight. Luckily we didn't figure it out until they walked off the plane with their cat carriers. That cleared up the mystery of the meowing.

We disembarked and headed to the rental car area to pick up our shiny silver minivan! The kids loved it, as they picked their seats. And I have to admit that I thought it was pretty cool, with the way you can use a remote to open the sliding doors, seats seven people and still has room for all the luggage! But it's a minivan...and really not "cool"...but we didn't care as we hit the highway and headed to our hotel in Alexandria, Virginia. After checking in, we grabbed breakfast and hit the room for a 5 hour power nap.

Waking up and feeling a little "off" we took the metro rail into Washington DC and prepared to see some sights. The kids loved the idea of the red double-decker open topped tour bus...in theory anyway. But note to self...kids do not like 2 hour bus rides that are hot and humid, with no food or water and a rainstorm! I, however, was thrilled that we saw all there is to see, from the Ford Theatre to Arlington Cemetery! By now we were pretty tired and headed back to Union Station. We picked up our van, went through the drive thru and enjoyed our fast food meal (although Jeff and I had salads.)

The next day we slept in and the kids just wanted to stay in the room and play with their toys. By 1:00, Jeff was getting a little stir-crazy, so we loaded up the kids for day 2 of our DC tour. Again, on the metro and headed for the Foggy Bottom stop. From there we walked towards the White House. We ended up at the back of the house, the site of many presidential announcements. We took our token photos and moved on to the Treasury Building next door. It is very obvious when you are near the White House, as there are armed guards and secret service agents all around.

We rounded the corner towards the front of the house...the street where you used to be able to stand was barricaded, so we had to continue on...it turned out to be quite a long walk. It was hot...hotter and more humid than the day before and the kids were starting to wilt...but we trudged along and made it to the front of the White House. We were as close as you can get as the average tourist, which is not close at all. In fact it's very far away...which made the White House look tiny...but hey...at least we can say we saw the White House!

Moving on, we headed back to the Visitor's Center to take a bathroom break. Here's a DC travel tip: The bathrooms at the visitor center close at 4pm. And of course it was after 4pm when we got there! So we took a hot dog break instead. And because it was SO hot, the kids had Rocket Pops too! Knowing them, that was probably the highlight of their day! Gotta love kids!

We continued on to the Washington Monument. I have always wanted to see it, but never imagined that I really would. It is awesome! It was quite a moment to stand at the base and look up. The monument is made of some sort of sandstone. It's two different colors, light and dark, because production stopped for about 20 years during the 1800's. When it resumed, they could not match the color even though the used the same quarry. There is your little bit of monument trivia for the day.

I've never studied the layout of the memorials....but if you stand at the Washington Monument and look one direction, you can see the White House...and then if you turn, you can see the Capital, keep turning, and there is the Jackson Memorial, and finally the reflecting pool and Lincoln Memorial beyond. I didn't realize they all lined up!! It's an amazing sight, if you don't expect it. Next stop was the Reflecting Pool, but first we stopped at the World War II Memorial. It was beautiful and overwhelming. Iron wreaths on pillars commemorating the states and territories, the names of the islands and places were battles were fought...homage paid to the fact that it was fought in two oceans and beyond. Really well done. Made me miss my Dad, who has passed away. I know he would have loved it and appreciated such a beautiful tribute.

From there, we continued down the tree lined pathway alongside the Reflecting Pond, on our way to the Lincoln Memorial. Rain. Lots and lots of rain....A downpour, really. And there we were, completely unprepared. We took refuge under a large tree, hiding from the wind and rain behind it's trunk. Each time the rain let up a little we would walk, only to hide under the next tree....and then it was done. Clouds parted, skies cleared up and it was blazing hot again.

We stood at one end of the Reflecting Pool and looked towards the Washington Monument...and there in the pool..you really can see the monument reflected in the water! Beautiful! The Lincoln Memorial was all we thought it would be! Felt like we were in the presence of greatness. On the wall is the Gettysburg Address in it's entirety. It almost seems like a strange monument for such a humble man...but considering the other monuments, it is fitting that Lincoln would have a beautiful monument to honor a man of such greatness! The kids really liked the Lincoln Memorial. I would like to say that it is because they have studied him in school....and for Hank that is true...but it's also because there is a movie where the statue of Lincoln comes alive and takes out the bad guys!

Our last stop was the Vietnam Wall. I think I thought it would be bigger...but then when we got down next to it and walked alongside it, looking at the names...it seemed enormous. To see ALL those names! I was so choked up. It's a very appropriate and beautiful memorial!

By now it was 7:00 and we were all tired. And so with aching feet, we dragged our sweaty selves toward the train station. As we staggered along, the kids whined and complained about how tired they were...and yet we pressed on. Soon they were asking to be carried...and we said no...and we staggered on...until...we saw...a ....Starbucks! Air conditioning, cool drinks and a cookie for the kids! We were saved! A quick bathroom break and we were ready to continue the death march with a slightly better attitude.

We made it back to the hotel with no incidents and prepared to go to dinner with Jeff's cousin, Lia. I'm not going to get into any details...but all I can say is that it is very hard to negotiate the freeways here. They are not clearly marked and it's any one's guess which way to go...which is why we missed dinner and ended up at the McDonald's drive thru. Sad..... But the kids were happy and we just figured it was yet another Gibbs Family Adventure!

The next day we overslept and had to scramble to gather our things to check out of the hotel. We then headed to the Smithsonian. It was so hot out...we were very happy we were going to be inside! First stop was the "Castle". It's the visitors center and also houses some exhibits. The highlight for the kids was the bird eating tarantula. NOT my favorite! So we left and walked down to the Air and Space Museum. It was a boy's dream come true! Jeff and the boys were so excited and Lucy and I had a great time too! Seeing the real lunar landing module and the Wright Brothers "Kitty Hawk" were the highlights for me. Hank loved all the World War II stuff. We all loved how they have planes and space vehicles suspended from the ceiling. Coolest thing ever!

After four hours of exploring the museum, we hit the gift shop for a souvenir and headed for the metro rail. A short time later we were in the rental car (do I have to say "van"?) and headed for Dover! It was a good trip...just two and a half hours away. We stopped and had dinner in Annapolis, before heading on. The kids started to soon get hungry and asked for food. We didn't have any and told them, they would need to wait. One of them piped up, "does Grandma Dot have any food at her house?" Jeff told them "no". Again they asked, "C'mon! Doesn't Grandma Dot have food?" Jeff got a silly look on his face and said, "no Grandma Dot doesn't have food. She doesn't eat." The kids all started yelling that she does to!! To which Jeff replied, "Grandma Dot doesn't have any food because she doesn't eat...she is a mummy!" I almost fell over! He is just so crazy! The kids couldn't believe their ears. "A mummy? She is not!? But Jeff continued with his game and told them that one of them had to sleep with her and they better not lay on her bandages, because she could unravel. Great...now all the kids were freaked out about meeting their Great Grandmother! But I happily went along with it...since Jeff pulls this kind of thing on me, quite often.

Needless to say, they were quite relieved to see Grandma Dot is NOT a mummy, but a perfectly lovely, beautiful, gentle woman who has waited a long time to meet them! So, we made it to Dover, which is where we are now. As I sit here, I can hear the thunder rumble overhead and am thinking maybe I shouldn't be on the computer? The kids are loving it here. They have taken to Grandma Dot as if they see her every day and are asking if they can live here with her.

We're here for another day and a half and then we will head on up to Manhattan. As the days draw closer, I have mixed emotions. I am eager to see Hank's surgeon and see what he thinks. How does Hank look to him? Does he see any atrophy? Has the fat been reabsorbed? What's the prognosis? Questions I need answered. Answers I want to know...or don't want to know...

A Mother's Heart

2010-05-17T12:10:00.000-07:00

I started this blog a little over a year ago...to keep family and friends updated...to chronicle all that we were going through...and to maybe...just maybe...help other parents going through the same thing. This is written through my point of view...not Hank's, not his Dad's...just mine. How I feel about Hank's journey...his illness...his surgeries...his recoveries...fundraising...all of it.

But lately, I haven't been able to write. Not finding the right time, or enough time, as the demands of three kids and all the school and extra-curricular activities are keeping me busy. At least, that is what I tell myself. But the truth of it is...I am burnt out. The last year of searching for treatment, fundraising, traveling to NYC three times, two surgeries, more fundraisers...it's taken it's toll. Emotionally, physically, mentally...worn out. It's like being the bride...planning your wedding for a year and a half...dress shopping, fittings, gift registry, bridal showers...and then the big day arrives, and it's wonderful and exhausting. And then the honeymoon and opening gifts. And then you get home and settle in, and think, "Now what?" I call it the "let down". You go, go, go...and then STOP!

But we can't stop. Hank has a progressive illness...and we need to stay diligent, watchful, and aware. And so we prepare to head back to NYC this summer...for a follow-up appointment and 3rd (minor) revision.

And we gear up for fundraising...one big one and a few small ones, before we go. And we continue to raise awareness...which is truly our passion. We want everyone to know what Parry Romberg Syndrome is. We want to take away the mystery...to find those researchers who will figure it all out.

In the meantime, we are so grateful to have Dr. John Siebert...the man who truly gave us hope through all of this. The man who made a huge difference in Hank's life. So although these times are tough, and we wish things were different...we truly are blessed to get Hank the help he needs!

Even so, it's been an exciting time for us as we have been pushing forward on Hank's Facebook group, "Helping Hands for Hank". In November, right before we left for New York for Hank's revision surgery, we did a "member drive" and pushed towards 500 members. We made it and then some!

Last month, Hank and I talked about how cool it would be to have 1,000 members in his group. It is a significant number, with less than 1,000 people worldwide (that we know of) who have Parry Romberg Syndrome...That would be one Facebook member for every one person suffering with Parry Romberg Syndrome... And so we did it...1,082 members as of today! Here's Hank thanking his members!

I know that sometimes Hank feels "different". That no one else at school really knows what he's been through. I wonder what he thinks when he looks in the mirror. And I worry. I worry that he will think less of himself. Or that he will be teased. And just when I really get myself worked up, he goes and does something that truly shocks or surprises me!

Like signing up for drama class after school. What? Join a class that will put on a special performance for the parents and school? So not only was Hank in his 3rd grade class play, but he also was in the "Academy of Arts" production. Doesn't sound like a kid with any issues, does it? Both plays were fantastic! Hank did such a great job! And both times I found myself in tears when he took a bow. The first play had a ton of kids in it and Hank had a bit part.

But the second performance...the one with his drama class...was so beautiful...Hank was confident, fervent, and beautiful. And not only did I tear up...(OK, make that cried...or really blubbered), but as the lights came on I saw many people drying their eyes. Not because of Hank per se, but because of the beautiful and powerful message. But for me...it was not only the message, but the realization that one year ago...I didn't think I would ever see him confident enough to stand on stage and put himself out there. I mean, he used to...before he got sick...but to see it again....truly priceless.

And if I look at this video he made...he's happy...he's funny and he's full of life! We've come a long way! Not done with it all...yet...but making great strides!

Looking back on the last month...Hank's little brother Charlie, turned six and had his first real "friends" birthday party! Hank was right there, helping with the games and of course, opening of the gifts. Easter, which all the kids truly enjoyed. Easter baskets, candy and gifts....getting dressed up for church...Easter egg hunts...and a family celebration at my sister Barbara's house. Having a spring break from school...hanging out with cousins, roller skating for the first time...lazy days...watching movies...playing games...all the things kids should do!

He continues to take karate and along with his little brother and Dad, he went to a weekend "karate camp" with his school, Moore's Karate. All three of them got their belt promotions: Charlie to a camo belt, Hank to a green belt and Daddy to black belt! Jeff is now considered a "Shifu". Thank goodness I don't take karate...can't imagine having to call him Shifu Gibbs! (makes me giggle just to say it) They have all worked so hard and this little bit of normalcy in our lives is a true gift. I couldn't be prouder of my "boys"!

Summer is fast approaching and we are winding down with school. This has been a really good year for Hank, despite the occasional bullying issues and hurtful things said and done at school. (Hank takes it so much better than I do) We were truly blessed to have Jerri Wood as Hank's 3rd grade teacher. The whole third grade teaching team is amazing and the three women involved have been kind and gracious and capable. I know Hank feels safe and cared about, and it has made a huge difference for him. Hank is so much happier this year for a variety of reasons...he has been through so much, and has come out of it a stronger and more confident person.

My heart still hurts for Hank. I wonder how next year will be. I worry about his self-esteem. I worry that the disease is still present, even though Dr. Siebert does not. (I am a worrier by nature). I look at our other children and think, "are they next?" We are in such a better place than last year, but I continue to have the tears at the back of my eyes, waiting to spill forward at any given time. And really, there is no basis for my feelings... Hank is good. Funny, smart, well-liked. Loves life, loves the outdoors...more energy than ever before. (He ran 3 miles in his school Jog-a-thon!) Strong, stoic, compassionate, helpful, caring, sweet... no neurological issues, no atrophy, growing taller and gaining weight.... so I must chalk this up to a Mother's heart. A heart that worries about all her kids, and wants them to be healthy and happy and full of love. So I will continue to worry, I'm sure...but their health, happiness and love seem to be doing quite well...

From Lowest of Lows to Highest of Highs

2010-02-27T22:16:00.001-08:00

The other morning over breakfast, Hank mentioned that he has looked the same since he was a baby. I guess he had been looking at some old photos Jeff had found of Hank when he was 15 months old. So I pulled out the photos and said, “Yes, you still look the same.” “Well,” Hank replied, “I looked the same until I got Parry Romberg’s.” OOF…wind knocked out of me on that one. I asked him if he thought he looked different. “Yeah, my face is kind of numb on this side, and I look different.” He replied in a slightly melancholy tone. I had run across a school photo taken of Hank last spring and had stuck it up on the refrigerator. It was just a proof…guess I didn’t order any…I pulled it down and showed it to Hank. “This is how you looked last year,” I told him, “See how thin your face is on this side and how your ear is sticking out?” He nodded. “In this picture, you don’t look like yourself, but now your cheek is full and your ear is back to normal, now you look like you always did.” He scrutinized the photo, felt his cheek, held his ears, “I think I look different,“ he finally said.

“Is it because of what you see in the mirror?” I asked. “Because a mirror is flat and your reflection is never true. What you see in the mirror is not how we see you. Look at pictures of yourself…that is what you look like to us.” Heartache…that’s the only way to describe how I, as Hank’s mom, feels. He’s right. He looks different in the mirror. He looks weird in the mirror. And that is the ONLY thing he has to look at. Imagine being him and every time you look in the mirror you see an asymmetrical reflection…which exaggerates everything. He must think he looks so bad. And yet he doesn’t in real life…with the human eye. However, Jeff and I are concerned and will take photos of him in the mirror to send to Dr. Siebert. Reality has set in today…that we might as well plan on the fact that he WILL need some sort of revision surgery this summer. We were hoping to spare Hank that….a normal summer…or a normal trip. But I don’t think that is in the cards.

I still believe...no, I KNOW... that we have done the best for Hank and that stopping the progression of the disease is the goal. But we can’t help but mourn for what once was…and we have to accept that this will probably be a life-long battle. And so my heart aches for Hank. He is so strong and stoic…and seems to have self-confidence. He is taking drama at school and will be part of a show…so obviously getting up in front of people is not a problem. And he was an alternate for the spelling bee last week…clearly he has confidence in his abilities. And he continues to take karate…so we know he can stand up for himself.

All of this comes on the heels of an emotional occurrence at school last week. As I arrived at school to pick Hank up, another mother, (who’s child has bullied Hank in the past) stopped to tell me that her son told her there was writing on the bathroom walls, and it is signed by Hank Gibbs. “What?” I exclaimed, “Hank would never do that!” “Oh, my son said the writing wasn’t Hank’s.” OK…well the school hadn’t called me, so it must not be that big a deal, I thought….I thanked her for letting me know and continued on.

Long story short…the writing was ABOUT Hank, not BY Hank…not sure which is worse. Glad I know my child…and know he wouldn’t do such a thing….but upset that Hank is the person being written about. Who would have it out for Hank? The kid truly loves everyone. He never comes home complaining about classmates…but rather sees the good in them. The teacher was so apologetic and upset as well. She didn’t know anything about it and when Hank and his friend ran to the bathroom so they could tell us exactly what was written, they found it locked and already being cleaned up.

I don’t know if I will ever know all the details, but I want to know WHO wrote it. It is a form of bullying and they shouldn’t get away with it.

As if Hank hasn’t been through enough….now he is being picked on from an unknown assailant who doesn’t have the guts to do it to his face. Jeff talked with Hank about it before school, giving him pointers on how to protect himself. He takes karate for a reason! And I told the administration that after giving someone ample warning by asking them to leave him alone…he has our permission to physically stop the bullying. We’ll take our lumps…but our kid WILL stand up for himself! Jesus said to “turn the other cheek.” But we only have two cheeks and sometimes meekness is mistaken for weakness (I stole that line from a guy at karate)…Someone is in for huge surprise at some point…when Hank decides enough is enough!

Even I have found myself "bullied" recently. A woman, who also suffers with Parry Romberg Syndrome, wrote me and criticized me for having a website that talks about Hank. She said that I should "Think twice before posting my son's PRS-damaged face for all the world to see" and that her "parents would never have been so cruel". OUCH! That really hurt and caused me to second-guess everything I have done thus far. She mentioned that people with PRS hate having their photo taken and "how could you have missed that?" But surely she couldn't be talking about MY child? My child who jumps in front of the camera every chance he gets....my child who "photo-bombs" every picture I take....no, she could not be talking about Hank. The kid loves the camera and quite frankly...the camera loves him!

Even though I didn't agree with what she said, I wondered if I was doing more harm than good? I asked Hank how he felt about the blog and the web site. And about getting his picture taken. He looked at me like I had completely lost my mind. "Fine," he said. "It's great!" I told him it's OK to tell me if he ever changes his mind. "OK mom," he said, "But I won't." That's my kid! Hank truly loves knowing that he is making a difference. That by sharing his story he is helping others. I think about Hank's illness all the time. And I wonder why Hank has it. But more times than not, I can't help but think that this isn't all about Hank. That maybe it's about someone we don't even know. But by having this illness and sharing the experience, he is helping someone else. I know it has changed me. It has changed and made better people out of a lot of us. This kid, through his courage and fearlessness....has made a lasting impression on so many.

And so once again, I must follow Hank's lead...and forget about what this woman has said to me. She is wrong. Her experiences are not our experiences. And I am truly sorry for all that she has suffered in her life. But times are different...different treatments, different ideas...and Hank has the support of not only his family and friends, but people all over. I don't consider Hank's face "PRS damaged"...in fact I resent that...Hank is beautiful...inside and out. And I love taking his picture...and will consider to do so as long as he lets me!

We've experienced quite a few "lows"...and then soared to the highest of highs...

First came Hank announcing that he was trying out for a high school play. They were casting a 3rd - 6th grade boy for the part of the little brother. He went through the first audition and was called back for a second audition. I am amazed...I don't think that is something I would do at age eight. I don't know if he will get the part...and really I don't care either way. Just going through the experience because he wanted to...that's enough for me!

But the REAL exciting thing came the next day. Hank was named Student of the Month for his class. Jeff and the kids and I were on hand to witness Hank taking the stage as his name was called during Chapel. The cheering and clapping was so loud! Hank's teacher, Jerri Wood, said she had been eyeing Hank for Student of the Month for awhile but wanted to wait until February since that is the month to celebrate love. Little did she know that February would have some challenges....she went on to say that Hank displayed love and was one of the friendliest kids in her class. She mentioned that Hank had faced some unkind things recently and had reacted like a much older kid. Jerri talked about Hank's recent surgery and how they all prayed for him at that time. And most importantly to me...she acknowledged that Hank has been through a lot!

Hank was grinning from ear-to-ear. And when he left the stage he RAN down and scooped Lucy and Charlie into his arms as they held on tight and hugged each other. From a mother's tears of distress to tears of joy. My emotions have been on a roller coaster! It was a proud moment for all of us. WE know Hank is amazing! It means so much when someone else notices too!

And to top off the end of February...the karate studio that Jeff and the kids attend, held a fundraiser the other night for Hank. It was called "Moore's Kick-a-Thon 2010". The kids had one minute to kick as many times as they could. Each kid had a partner that held the punching bag and each time their foot connected with the bag, it was counted as a kick. They went out and got sponsors and sold dinner tickets too. It was a tremendous amount of work! The event was a huge success! Over 100 people came out to take part or cheer the kids on! The kids had fun, won prizes for the most kicks and the most money raised. It was amazing! To see so many people come out for Hank! We are so honored and blessed to be a part of such a wonderful community of people. The Vargas family, that runs Moore's Karate are incredible! They have been a part of Hank's journey from the beginning and have taken him under their wings. I know Hank feels loved and at a time when he really needed it....we couldn't ask for more!

I know we will face more challenges and have highs and lows...everyone does. Hank commented a couple of days ago that, "I wish I were just a normal kid." That hurts. But I assured him that not only is he "normal"....he is so much more!

Stitches Out ~ Compression Tape Off!

2010-01-10T20:12:00.000-08:00

Can’t believe it’s already January. We arrived home the night of Dec. 10th and it has been non-stop ever since with Christmas prep, Christmas, New Year’s and back to school. And as before, I find myself in need of some time to just decompress and let it all sink in. The build-up to Hank’s surgery was stressful and now I am on the other side...and for some reason it’s almost as hard. Hank is doing well...really well! Back in school and resuming life. Six months from now, we will again make the trek to NYC. But for now...we just move forward.

I actually wrote this next entry while on the way home from New York, but couldn't seem to find the quiet time I needed to post it, until now:

Tuesday, December 8, 2009:
We reluctantly left Connecticut on Tuesday morning, just in time to make it to Hank's doctor's appointment. Our time in Connecticut was too short and no one wanted to leave. As we sat at dinner Sunday night, we reminded the kids that it was our last night there. Hank's face crumpled, "Oh no, " he said, as he bowed his head and tried to fight back the tears. We sat like deer in the headlights, unsure of what to say. "We need to get back to New York to see Dr. Siebert's nurse," I told Hank. He quietly sat with his head down, and we all looked at each other. Someone started a new conversation, giving Hank the time he needed to process the fact that the visit was ending.

He quickly recovered and when asked why he didn't want to go back to New York he replied, "One...the apartment is too small! Two..the apartment is too small...and three...the Richard family is not there!" I knew it...it's hard to go back to a little NYC studio apartment after being in the beautiful Connecticut countryside, in a gorgeous house with lots of windows, surrounded by the warmth of this family that you love. I understood. I didn't want to leave either. I have a friend in Patty and I love spending time with her! And Jeff was enjoying Larry's company and getting to know everyone. Their whole family has become so important to us. It is a friendship forged through the heartache that only we can understand...having a child with this illness. But more than that...we have fun. We all have the same sense of humor and know how to see the good in spite of the bad.

The next day, we packed up our things to prepare for departure. But when it came right down to it, we really didn't want to leave yet. Patty had suggested we stay and just leave in the morning. But both Jeff and I were worried that we were overstaying our welcome. I chatted with my sister, Mary, online Sunday night and told her our dilemma. She commented that since Patty was the lady of the house and she extended the invitation to stay another day, we should just do it. I had to kind of agree with her. If I wanted my guests to leave, I would have been putting the train schedule out and circling the time of departure! (Come to think of it...I DID see a schedule on the counter...)

And so we stayed one more day. It was perfect. Poor Sean had to go to school. But the rest of us had a great day. Larry took Jeff out and they went for a drive. Kyle took Hank and Charlie to the fire station where Kyle is a volunteer fireman. And Patty, Lucy and I headed out for a little “girl time” and some window shopping. We all had such a great time and came together in the evening to talk about our days.

Pizza for dinner and a game of Monopoly with Hank, Jeff and Patty…made Hank’s stay complete! And with that, he accepted the fact that we would be leaving in the morning.

Rather than asking Patty and Larry drive us all the way back to NY, we used the car service that they normally use. A very nice man named, Phil, pulled up in a silver limousine. I was expecting a Town Car and couldn't have been more surprised! What a treat for all of us…now this beats the train!!!

We said our goodbye’s…hugs all around and promises to talk after Hank’s stitches came out…and we were on our way. Heading out of the picturesque and serene little town and heading for the steel grey of NYC skyscrapers.

We made it to the apartment around 11:00, giving us 45 minutes to feed the kids, catch a cab and be in Dr. Siebert’s office for the removal of Hank’s stitches and the plastic compression wrap on his face. Poor kid…his face looked like someone took some saran wrap and just wrapped his face like a leftover!

Jeff ran up and grabbed some donuts and muffins from the local “Dunkin’ Donuts” while I got everything ready for our excursion. The kids snorked their donuts and we were off. Crammed into an SUV taxi, which looks like it would be bigger than a Crowne Victoria…but it is not! Five people…again…crammed into a little taxi, stuck with the cab driver from hell. What should have been a quick and easy $8.00 trip turned into a 15 minute and $16.00 cab ride. ARGH! It was all we could do not to start freaking out in the backseat as we sat in traffic. I have been to Dr. Siebert’s office quite a few times and we have NEVER taken the streets this guy took. Frustrating! So we were late…and perturbed..but we finally made it!

Dr. Siebert’s staff, Dee and Nilsa were all smiles as we came through the door. Lisa, the nurse, came out to greet us. Jeff, Hank and I had met her after the last surgery, when she took out some stitches and cleaned Hank up a bit. Lisa is a gregarious blonde with a fun sense of humor and captivating manner. We felt so at ease with her and were so happy to see her again. Hank and Lisa joked around as she led us into the exam room and got things ready.

This was it. The stitches were coming out…over Hank’s left eye, where he had an eye lift last time…and in front of his ear. Hank wanted to try and pull the compression wrap off himself…and slowly started to peel it off. He got about halfway through and then it really started to hurt. Lisa tried to help him by holding his skin, and then put something liquid on it to make it easier…and finally the last of the plastic came off…but not before pulling out some hair! It hurt! I secretly feared that his entire face would spring out with a big “boooiiiinnnggg” as they pulled the plastic off. But no cartoon sounds…no giant face popping out…just Hank’s beautiful, symmetrical face! Whew!

The stitches came out easily with Hank only wincing once or twice. Lisa cleaned the ink off Hank’s face as he looked in the mirror checking the results. Lucy and Charlie were in and out, while all this was going on. Lucy stayed for most of it, but when Hank started to feel pain from the plastic, Charlie said, “I can’t look!” and hightailed it out of the room. These little ones can’t stand to see Hank hurting. Lucy, being the caretaker she is, went back and forth from exam room to waiting room, checking on both brothers.

And that was it. Done! The purpose of our trip to New York was complete. Hank could now walk the streets of NYC knowing that he looked like everyone else….well…everyone who had been in a street brawl, that is! But no matter what…it was 100% better than the last time and it was time to get out and let Hank be a kid!

With lots of hugs and goodbyes, we took our leave of Dr. Siebert’s Park Avenue office and headed to Central Park. Hank wanted to show Lucy and Charlie “The Museum of Natural History”. He loved it when we went in March and since the movie, “Night at the Museum,” all three kids knew about it.

We took a nice leisurely walk through the park. The day was clear, crisp and cool. It felt good to be among trees and grass, and wide open space. The sounds of Christmas were in the air…the saxophone player who played “Rudolph the Rednosed Reindeer” when Lucy dropped a dollar into his case… the man dressed in a top hat and cape, standing in the tunnel that leads to a huge fountain, singing Christmas carols in a beautiful tenor, made even more so by the amazing acoustics of the space…and another saxophone player playing “White Christmas” as we strolled the mall. I linked elbows with Jeff, “Isn’t this romantic?” I asked, noticing how handsome he looked in his black trench coat and charcoal grey scarf. “Yes, it sure is,” Jeff replied. “Let’s pretend the kids aren’t with us for a moment”…which lasted all of about 20 seconds. But it was enough to feel the romance of Central Park…as couples experience it.

We continued our trip through the park and as we emerged Hank called out, “There it is! There’s the museum!!” Lucy and Charlie happily bounced along, feeling the excitement of a new experience. We crossed the streets and walked up the stairs of the Museum of Natural History. With its Gothic facade and tall doorways, it’s an impressive building. As we came through the doors, the yells of excitement were replaced with the sounds of children in awe. “Wow! There’s the T-Rex!” they said in hushed tones. We admired the dinosaurs as Jeff purchased our tickets. We headed to coat check, dropped off our coats and took on the museum.

Three hours later, we found ourselves with tired feet and smarter brains. We each had a favorite thing to see…for Hank and Jeff it was the dinosaurs, for Charlie it was the Easter Island statue called “Dum Dum” in “Night at the Museum” and for Lucy is was the huge elephants on display. I liked the underwater rooms with all the different sea creatures and their relative sizes.

At 5:00, a voice came over the loudspeaker, announcing that the museum would be closing in 30 minutes. Absolute chaos ensued! The Gibbs kids freaked out! The movie “night at the Museum” is about a security guard in the museum at night and all the displays come alive. The kids were so worried that we would get locked in and have to experience the same thing…that Lucy was on the verge of crying. Even Hank was worried! And when I thought about it…it freaked me out too! I wouldn’t want to be anywhere near the 13 foot spider crab if were to come alive! Or any of the reptiles! So, we hustled through the museum, grabbed our coats and made it out the doors just in time! Whew!

We left the museum and headed down the street. It was 5:30 and the wrong time of day to hail a cab. And so we walked…and walked…and walked….We found our way to Times Square, had dinner at Bubba Gump’s and then made it over to Macy’s. I wanted to see the window displays that are reputed to be quite fantastic at Christmas. And we were not disappointed! We saw a sign at the door that there was a Christmas puppet show on the 8th floor. So eight floors of escalators later…we arrived to see a closed sign and a sign that read, “Santa will be back at 9am.” Darn! How fun would it be to see Santa at Macy’s in NYC? As we stood there looking at the sign, an“elf” popped out and waved us in. What? What’s this? And so with silly grins on our faces, we followed the red and green clad young man into a maze of velvet ropes leading to the distant lap of Santa Claus!

The kids were excited as we wound or way towards the big man. Bright colored lights, dancing dolls and bears, toy train sets and Christmas villages…all visions for us to enjoy along the way. And then finally….finally…it was our turn! “Party of five to see Santa Claus,” Cupcake the Elf announced. And we walked in, to see a perfect Santa Claus sitting in his chair just waiting to hear what these kids wanted for Christmas. Hank went first, bounding up to Santa and taking a seat on his lap. He quietly told Santa what he would like for Christmas. Santa didn’t need to ask Hank if he’d been a good boy…Santa already knows that!

And then Charlie had his turn, excitedly telling Santa about all the video games he wants. Good thing Santa speaks “Charlese”…when Charlie talks fast…it takes an expert to decipher! And then little Lucy bravely climbed up on Santa’s lap. She told Santa, in a voice barely above a whisper, she asked Santa for one toy…a Webkinz stuffed animal. Hmm…when they’re at home they are circling everything in the toy catalog…but in front of Santa, they clam up! That’s OK with me!

The kids gathered around Santa for a photo, with Lucy and Charlie each on a knee and Hank on a stool in front. After the picture, Santa Claus told the kids that he wanted to talk to them. In a very serious voice he told the children that he wanted them to each draw him a picture and leave it out for him on Christmas Eve. He said that “I bring the pictures home for Mrs. Claus to see.” He also reminded them that Santa and the reindeer get hungry and to leave out cookies and milk and carrots too. The kids promised and hugged Santa goodbye.

New York City at Christmas is magical and we had such a fun day! Seeing Hank without any remnants of his surgery…enjoying the sights of the city just like any other kid, as if he didn’t have a care in the world! Did he really have surgery just six days ago? Incredible! Hank’s strength never fails to amaze me! He's only eight, and yet sometimes I forget that...he seems so wise beyond his years. He’s been through so much, and my heart swells with emotion when I see him just continue on, with no complaints…just courage.

Road Trip!!

2009-12-06T09:23:00.000-08:00

It's Sunday, late morning and I am in the playroom watching Lucy play pretend and Hank and Charlie play video games. Just a normal weekend in the Gibbs' household. Except it's anything, but "normal". This isn't our playroom...and those aren't our video games...and this isn't the Gibbs' household!

We are in Connecticut, where we have spent the last two days with our friends, Patty and Larry Richard and their sons, Sean and Kyle. Getting out of the city, was just what Hank needed to recuperate. He has forgotten about his surgery and is enjoying being a kid, surrounded by people who completely understand all he has endured. The Richard family has spent many years dealing with the effects of Parry Romberg Syndrome. Their son, Kyle, has had the same surgeries as Hank. It is such a great gift to be able to spend time with people who truly understand what we are going through!

Hank's revision surgery was such a different experience than his 8 hour free-flap surgery in July. I expected a tough recovery, but so far it has been relatively easy. Hank is one resilient kid! Thursday was the day after surgery and also the day that Hank's surgeon, Dr. Siebert, was heading out of town. I was a little concerned about nursing Hank back to health all on our own with out a follow-up appointment until Tuesday. How would I know if he was looking as he should?

I called Dr. Siebert's office and asked if we could get in to see him before he leaves. "He's leaving the office at 11:45 am," Dee, his receptionist told me. I looked at the clock...11:03 and we are in pajamas...."OK, I said...we will be right there." Hank and I quickly got dressed, threw on our coats and ran outside to catch a cab. Fifteen minutes later we were sitting in the exam room with Dr. Siebert. "Hey big guy!" he said to Hank, as they gave each other a high-five. "How are you feeling?" "Good!" Hank replied. "You look great!" Dr. Siebert announced. He said that the swelling might get a little more pronounced, but that was normal and his eye might even swell shut. But not to worry...and to keep the incision over his eye lubricated with polysporin. "He's going to look fantastic!" he assured us.

Hank looked at Dr. Siebert and asked, "When can I go see Kyle?" I smiled to myself as I watched the doctor deflate just a little bit. He had told me the day before that Hank could not go to Connecticut to see Kyle because he was too active when there. I promised that we were just going to lay around, play Legos and watch movies. "Well, if that's the case, you can go on Saturday," he said with a grin. "ALL RIGHT!" Hank replied. I was so relieved. I knew that Hank wanted to see Kyle and his family, more than anything. And Lucy had been asking us "when can I meet Larry?" (although I don't know if she realized Larry is the dad...) Let's face it, our entire family would be very disappointed if we didn't get to see the Richard's!

We gave Dr. Siebert hugs, said goodbye to his staff, Nilsa and Dee, and went out and caught a cab. "You know, I am feeling pretty good," Hank confided, "Let's go to the Museum of Natural History today!" I thought about it for a split-second, and then remembered that Hank had surgery YESTERDAY, and no way would we be going anywhere! When we got back to the apartment, Hank laid down on the couch, "I'm tired," he said. And I knew that laying low was exactly what he needed.

I filled Jeff in on what Dr. Siebert said and called Patty Richard to let her know. I got a text message from her later that said, "My family wants to see your family...we're coming to get you tomorrow!" OK, so it was a day earlier than the doctor said, but as Patty and I discussed....they were coming in the evening...and really...what's the difference between sitting on a couch and resting and sitting in a car and resting? Same thing, right? Well, at least that was the logic we used to make our plans!

We didn't say anything to the kids about our upcoming trip and just concentrated on keeping Hank quiet and resting. We played cards, watched TV, the kids played on their hand-held video games. And Jeff and I were right there with them. I did make quite a few trip up to the laundry done...lots of washers and dryers made quick work of it!

In my effort to keep Christmas alive and well for the kids while we are traveling, I brought along some snowman appliques for the kids to decorate the apartment with. Three snowmen, three kids...great idea...or not! The snowmen weren't the same size...one was a girl...one was really small...and so the whining began! UGH! So much for a fun family project! But after they realized that they could dress and re-dress the snowmen, everyone settled down and had a fun time!

Friday morning we got up and Jeff and I picked up the apartment and got our things together for the trip to Connecticut. The kids played together and didn't seem to even notice that we were packing! We stayed in until afternoon and the piled ourselves into a taxi made for four passengers...and headed up to 5th avenue where all the stores are. We didn't tell them where they were going, so the whole ride, Hank kept asking, "Where are we going, again?" We made them guess and I can't believe none of them got it right. What they didn't know, was that we were heading to "Build-a-Bear," a store where the kids can pick out a stuffed animal and actually stuff it themselves, dress it, and adopt it. Kind of silly, but they really love it! And the store in NYC is huge!

The kids had such a great time and we didn't even mind that it was crowded and the lines were long. Hank picked out a frog, which he named, "Warty" and dressed as Luke Skywalker from Star Wars. Charlie's choice was a wolf, which he dressed as Darth Vader, also from Star Wars and named it "Wolf Vader". (so clever) And Lucy decided on a cinnamon colored bunny which she dressed as a fairy, but put cheetah-print Maryjane shoes on, and is now called "Beautiful". I think it is so fun to see their different personalities and creativity shine through on things like this. They each have their own mind and pick what they want!

It was dark by the time we left Build-a-Bear, and headed out. Patty had sent me a text message that they were on their way, so I thought we had a couple of hours to kill. I had the bright idea to go look at the windows at Macy's and herded the family in that direction. But I must have had a brain hiccup...we were on 46th street and in my mind, it was just two blocks down and two blocks over...but it wasn't on 44th street...it was on 34th Street! So the hike had been in vain! With the energy flagging and the stomachs rumbling, we stopped into a McDonald's to get the kids a quick snack. We ended up on the third floor of the restaurant, where the kids happily dug into their not-so-nutritious meal. I received a text message from Patty that said they were getting close. "EEK! I thought...we are not going to be there when they arrive!" I showed the text to Jeff and we started hustling the kids out. Done or not...we had to go!

We headed out the door and down the street, where Radio City Music Hall stood out against the night sky. The streets were crowded with people and traffic was congested, so we headed for a side street to catch a cab. We found ourselves among even more people and smack in the middle of Rockefeller Center and the gigantic and beautiful Christmas tree! It felt like everyone in NYC picked the exact same moment to view the tree and it was a little daunting to make sure we had all three kids in sight. But we stayed for a minute and took some pictures. It is truly a remarkable sight and I am excited that we got to see it.

We pushed through the crowd and made out way out onto a busy street. We quickly hailed a cab and made our way down to the apartment. Patty and Larry had arrived at the apartment and were waiting for us. I was very eager to see them and did not want them to have to wait for us. The kids still did not know that they were picking us up, and I couldn't wait to see Hank's reaction. The cab ride took longer than expected and with five people crammed into a small cab with bulky jackets, my purse and three big "Build-a-Bear" boxes, it was less than comfortable.

We pulled up to the apartment and I saw a vehicle in the loading zone with a police parking enforcement vehicle parked alongside. Uh-oh...this can't be good. I could only imagine how stressed Larry would be feeling. We piled out of the cab just as Patty came out of the SUV. I smiled at Patty and watched Hank to see his reaction. I saw him catch Patty out of the corner of his eye. He looked at me. He did a double take and looked at Patty. He looked at me. "Hank, who is that?" I asked. "Is that Patty?!" he asked. He looked again and then yelled, "It IS Patty! and Larry too!" He was so confused...what were they doing there? "Hank, they are picking us up to go to their house!" I told him. "Tonight? Right now?" he said as he turned and gave Patty a huge hug. Hugs all around and then we were racing into the apartment to grab our bags. They had told the police officer that they were picking up a patient, and were given the OK to stay where they were. We moved as quickly as possible, and before I knew it, we were loaded in and ready to go.

Hank and Charlie were in the third row of seat, with jackets, blankets and stuffed animals between them. They couldn't see each other, and I am pretty sure that Charlie couldn't see out the window. Lucy sat sandwiched between Patty and I in the second row, and Jeff rode shotgun, with Larry at the wheel. Larry maneuvered us out of the city and we were on our way. The boys fell asleep in the back and Lucy kept Patty and I entertained with her "i-pod" toy for her new bunny animal.

We stopped for dinner, and had a fun time as the kids and Jeff got acquainted with Larry and Patty. Lucy usually takes a little while to warm up to people, but she quickly felt comfortable with those two. Charlie sat next to Larry and I could see they were already fast friends. I sat there feeling so happy and grateful that Jeff, Charlie and Lucy were getting the chance to meet the Richard's. And I couldn't believe we were with them! What a wonderful treat!

After dinner, we got back on the road, and a half hour later, we were driving up their driveway, and being greeted by "Mocha" their friendly chocolate lab. Hank was out of the car in a flash. Hugging Mocha and heading for the house. He was greeted by 14-year old Sean and 20-year old Kyle...the Richard offspring. Hank loves them so much and has a special bond with them. Their friendship and support aided his recovery after his last surgery and Hank will never forget it. He considers them his friends and big brothers and with Kyle experiencing the same condition...Hank looks up to him, and the bond extends beyond what I, or anyone else, could understand.

The Richard's had gifts for each of our children, with the boys receiving "Hess" cars and Lucy getting a little dog in a purse that you can decorate. They were so thrilled. But I feel so bad, as I did not plan to arrive here empty-handed. In fact, I ordered something for them to send to them prior to their arrival, but it did not arrive at our house until we arrived in New York. It is now sitting at my sister's house, waiting for our return. Oh well...it will arrive to them at Christmas! Good intentions.... (Jeff did make up for it the next day with a bottle of Grey Goose Vodka for Larry)

We finally got everyone settled down for bed, with all three Gibbs' kids in the playroom. Patty, Kyle, Jeff and I stayed up late talking, and then headed off to bed. We had such a great night's sleep and everyone woke up happy. Saturday, we just laid low, with Lucy and Jeff decorating her new puppy purse, and the boys playing with their new cars, video games, and anything else they could get their hands on!

Larry and Patty arranged for Sean and Kyle and Kyle's girlfriend Liz, to watch our kids, so that we could go out and have a nice adult dinner. What a treat! Liz's parents, Rob and Anna, came too, and we had such a nice time. Although I found myself on the verge of tears as we sat at the table...worried about Hank. Just three days out of surgery...the power had been flickering, as the first snow was falling, and I had caught Hank messing with the fireplace not once, but twice before we left. Jeff and I were hard on him and he cried, which made me feel terrible! So Patty called the house and checked on them. They had just settled down together to watch a movie, and all was well. And I released the breath I was holding and was able to truly have a great time! Lots of laughter and funny stories!

We returned to find that the little kids had outlasted the older kids! Everyone was happy and had a great time. We got the kids and ourselves to bed, in preparation of an early rising time, to make it to church.

And that brings us to today. Got everyone up and out the door for 9:00 am Mass. It was cold, with snow on the ground, but the church was crowded and warm. We had to take two vehicles and Hank happily rode in the truck with Larry and Sean. In fact, I didn't even know he had left! We came next and were able to all sit in the same pew.

As I sat there, looking around me...my family and the Richard family, together in prayer. I felt my heart swell with gratitude....that we had been brought together with this family...that if not for Hank and Kyle having Parry Romberg Syndrome...we would never have met. Gratitude that Hank's surgery went well and he was getting a chance to recuperate with this family who understands him. Who understand what Jeff and I have been through. And a sibling in Sean, who understands how Lucy and Charlie feel. What an amazing gift we have been given!

As luck would have it, they were selling donuts after church, which is exactly what the kids wanted for breakfast! We purchased a box and headed back to the Richard's home. Donuts consumed, the kids headed upstairs for playtime in the playroom. Which brings us back to when I started this! Hank's follow up appointment is Tuesday morning, when he will get out the stitches above his eye and the plastic off his face.

Another day of recovery ahead of us...football on TV, games with the kids...just a nice easy day, with beautiful scenery around us...a warm fire...and fun friends! Just what the doctor ordered!

Revision Surgery Day!

2009-12-02T17:19:00.000-08:00

Today started bright and early. Jeff was up at 6:00 and I was up at 6:30am...brutal since I went to bed at about 3am and found I just couldn't sleep. Too much adrenaline the night before surgery...

We got the kids up shortly before we had to leave to head to the hospital. Hank couldn't eat or drink anything and we wanted to make it as easy as possible for him. We got everyone dressed and headed out the door to catch a cab, which isn't easy when you have 5 people and must wait for a van-sized taxi! This time, the surgery was at Lennox Hospital, which is out-patient only.

It's also called "The Manhattan Ear, Nose and Throat Hospital" and was established in 1858...a beautiful brick building on the upper East Side. It was a really nice place for Hank to have surgery.

We checked in and planted ourselves in the waiting room. Kids, jackets, Ugly Dolls, books...we were set to wait awhile! They finally called Hank's name and would only allow me to accompany him until he was shown into a surgical prep room.

We were taken into a small room by nurse Margie, where Hank could change his clothes. They actually had a kid-sized gown and kid size lounge pants for him. Very nice, since last time he was swimming in his gown. I bagged up Hank's clothes and jacket and stowed them in the locker assigned to us. However, I failed to actually look at the locker number and for the rest of the day when they asked me what locker we had, I would just stare at them blankly.

We were then walked around the corner and Hank sat down in a sheet covered recliner and given a warm blanket to drape over him. The admitting nurse, Adele, introduced herself and proceeded to ask a lot of health questions. She took all of Hank's vitals and asked him if he knew why he was there. She verified Hank's identity and asked him to spell his name. Hank's legal name is "Henry" and that is what was written on all her documentation. "H-E-N-E-R-Y," he told her. Hmm ...she looked at me, "Is that right? E-R-Y?" "No, no," I replied, "he just never goes by that name and is not sure how to spell it." We told her he goes by Hank and for the rest of the day, he was called Hank, thanks to the yellow post it note on his folder that said, "Call me Hank!"

After Adele finished with us, she told me that she would wait with Hank, while I went out and got Jeff and the little ones. I found them in the lobby, Jeff sitting with two sleeping children. I stayed in the lobby while Jeff went in to see Hank. This would be the only chance for Jeff, Lucy and Charlie to see Hank before he went upstairs for surgery, as they don't allow children up there. I felt so bad for the little ones, that they would miss their chance to hug Hank and he wouldn't have a chance to see them. And I was wondering if I should wake them up, when they both opened their eyes and sat up! I grabbed them and quickly walked them back to see Hank.

They were all happy to see each other and I could see the wheels spinning in their little heads, wondering why Hank was wearing pajamas and was in a bed. The nurse brought us an extra chair and we crowded into the little room. All three of them had their new "Ugly Dolls" and Hank entertained them with the dolls, putting on a little show and making them laugh. It struck me, that here is Hank in need of attention, and he is putting his siblings first. I made a mental note to remember that...and to recognize what a good brother he is...proud moment...!

After about 20 minutes, two nurses came in and said it was time to take Hank up to the surgical floor. They had given me a blue surgical suit (also known as the "Bunny Suit") to put on over my clothes and stood there while I put it on...I would like to say I did it smoothly and with grace...but not the case, as I tried to balance on one foot while strategically placing my boot-clad foot through the jumpsuit pant leg. Charlie and Lucy and Jeff all said their goodbyes, and I promised Jeff I would text him to keep him in the loop. They took us upstairs to the second floor to the surgical waiting area. We had a very nice and attentive male nurse. He set Hank up in a recliner and then brought over a portable DVD player with a movie, for him to watch.

As Hank and I sat there watching "Curious George" on the player, a man wearing scrubs came up and said hello. He introduced himself as the anesthesiologist. He started talking to Hank, asking him what kind of surgery he was having. He asked Hank if he remembered anything from his previous surgery. Hank told him that he remembers being wheeled into the operating room and the mask over his face, as well as the ceiling. I was blown away! I didn't think he remembered anything! After the dose of "loopy juice" that made his eyes glaze over and compelled him to say, "Let's get this party started!" while throwing up a rock star fist, I didn't think he even knew where he was!

The anesthesiologist was a very personable man, and did not talk down to Hank, which is always appreciated. He asked Hank if he had any questions or concerns. Hank told him that when he woke up last time, he had goop in his eyes and it was hard to see. He really didn't like that and wanted to know if they were going to do that again. The doctor explained that usually they tape the eyes shut, but where they were operating was close to the eyes and the tape would be in the way. He explained that when you are asleep during surgery, your eyes don't blink and they dry out. The "goop" is to keep the eyes moist. And for the first time in all of this, I saw Hank's eyes fill with tears. He struggled to gain control, blinking the tears back and willing them to stay in his eyes...but when the doctor said, "yes, I will probably have to use that goop again," the tears started to escape from his eyes. Hank quickly wiped the tears before anyone could see them and again I watched him struggle to stop his emotions. And he did it! I knew that was hard for him...he HATED that goopy stuff. It was greasy, and it made his vision bleary, making him think there was something wrong with his eyes...that is scary! But he accepted that it was the only way, and let it go...

I then learned that our anesthesiologist, Dr. Gingrich, had surgery when he was two. From that moment on, he knew he would be a doctor. And a few subsequent surgeries when he was older. Because of his experience, he believes in treating each child differently, assessing their comfort level and level of understanding, before he talks with them. I loved his approach!

Dr. Siebert soon arrived and I'm not sure, but I think I heard a fanfare of trumpets upon his arrival...or maybe I just imagined it... He came right over, big smile on his face and said hello. He made a few notes, signed Hank's left temple and took a long look at Hank's face. "OK," he said, "I'll see you soon!" And he went off to make notes and prepare.

And with that, they got Hank up, and we walked down the hall to the operating room. Dr. Gingrich was with us and Hank looked around as the doctor sat down and started showing Hank all the machines. He got Hank up on the table and asked him if he would like to fall asleep sitting up or lying down. Hank said he would lay down, and the doctor explained the process, and how all the machines worked. I could see that the surgical nurse was getting impatient as her eyes rolled back in her head, but I greatly appreciated all the time he was taking with Hank to make sure he was comfortable and ready. Hank finally laid down and held the mask as the doctor started a low stream of anesthesia. Hank's eyes started to grow heavy as the doctor talked to him and stroked his brow. I leaned over and gave Hank a kiss and told him all would be well. And just like that, he was out.

The nurse shuttled me out when Hank started to react to going under. He started to flail around a bit and I tried to tell her that I had seen this before and I expected it, but she got me out of there quick! Tears welled up in my eyes...Hank looked so small on that table. I knew what to expect...we've done this before...but something about seeing that little skinny kid on an operating table just really chokes me up. As we went out the door, we almost ran into Dr. Siebert. He took one look at me and gave me a big bear hug saying, "He's going to be fine. We will take great care of him!" I told him I knew that...and thank you. He told the nurse to have me go to the recovery waiting room on the operating rooms floor, so I would be there when Hank came into recovery and Dr. Siebert could find me.

The nurse led me through the recovery area, to a small waiting room with a TV. I told her that I needed to go downstairs and get Jeff and the kids. She said OK, and walked me to the elevator, so I would know the way next time. I went downstairs and found Jeff, Charlie and Lucy in the lobby. I filled Jeff in and he said he would take the kids to Central Park to burn off some energy. One of us had to stay, so I grabbed a cup of coffee and headed back upstairs. But first I text messaged almost everyone in my cell phone to tell them that Hank had gone into surgery. It was 10:30 am...a half hour behind schedule. They had told me three hours, so I figured on 1:30pm.

I spent the next few hours texting with concerned friends and family members, trying to keep everyone involved. Jerri Wood, Hank's teacher, texted me and asked if she could have the kids in chapel pray. I said of course, and I was so pleased to know that while Hank was in surgery, all of the third, fourth and fifth grade students were praying for him, along with their teachers. I got out my Rosary, and prayed myself.

Shortly thereafter, and a half hour early...Dr. Siebert came bounding into the room with a broad grin, saying, "Hi! Want to see him? Come on!" I jumped up told him I needed to put my "worry beads" away. "Were you worried?" he asked. "No, I just like to pray," I replied. And in truth I wasn't worried...have never been while Hank is in surgery. I know he is in great hands! But I am praying for a miracle...and when you know that at least 500 people are praying for your son...you pray too!!

We walked into the recovery room, and there was the Dr. Gingrich and Hank, who was sleeping peacefully. Dr. Siebert told me everything went great. That he injected steroids into the scar on Hank's back to try and lessen how raised it is. That he took fat from Hank and inserted into his upper lip, he did a lower eyelid raise and moved tissue around the middle of his face, giving him a mid-face lift. He also pointed out that there was plastic wrap on Hank's face, to act as compression. "How long does that have to stay on?" I asked, "Until we take out the stitches next week," was the reply. I know Hank...that plastic wrap is going to drive him crazy!! Poor kid!

Both doctors told me they were very pleased with the surgery. Hank looked so good... I looked at him, picturing what he will look like when he is healed. Dr. Gingrich suggested we just let Hank wake up on his own, so I sat down on the chair and started text messaging everyone. I wrote to Jeff and let him know that Hank was out of surgery. Jeff said he was making his way back with the kids and would see us soon. Hank slept for another half hour or so, and then all of a sudden opened his eyes. He looked dazed and somewhat confused. He blinked and looked at me. I realized it before he did, but there was no goop in his eyes!

Hank was upset. He wanted to go home. Waking up from surgery is no fun, and this is where Hank has a hard time. He said his face hurt really bad and I asked the nurse for pain medicine. She said none was prescribed but she would work on it. Meanwhile, Hank started to come out of the grogginess, and he wasn't quite as upset. The nurse came over with the meds, only to have Hank say, "I am fine. Never mind, I don't need it!" I think that the plastic wrap is what made him think his face hurt...it felt weird and he wasn't used to it.

By the time Jeff and the kids showed up, Hank was sitting up in bed and had a crazy-looking ice pack tied around his head to reduce swelling. Lucy and Charlie stared at him, wondering what that thing was! A nurse came up and said they couldn't be up there, and we said "OK, we just wanted them to see each other really quick, since Hank was asking for them." The next thing we know, the nurse is pulling the curtain all the way around us and says, "It's OK..they can stay." We were so grateful. The kids needed to be a part of what was going on.

Dr. Gingrich stopped by to see Hank. "Did your eyes feel better this time?" he asked. He explained that he flushed them out after surgery. He seemed so pleased that he had thought of that. And Hank was grateful that he had! Dr. Gingrich had a surprise for Hank. Since Hank was so interested in everything, and loves science...the doctor bagged up the tubing from the respirator, the mask and the heart monitor patches for Hank to take home.

But being four and five, Lucy and Charlie got bored and it was time to get them out of there. Jeff went back to the lobby and I accompanied Hank down to the final room before discharge. They let the whole family back in and the nurse brought Lucy and Charlie a soda along with Hank's drink. Finally, Hank got a chance to eat something. Poor skinny kid went 19 hours without food and almost that long without drinking anything.

After another 45 minutes, Hank was discharged from the hospital! Jeff helped Hank get dressed, as Lucy, Charlie and I waited in the lobby. It was so surreal to see Hank come walking out in street clothes, with his jacket on, ready to go. And it was so exciting!

We headed out to the street and tried to find a cab. We ended up having to walk one block down and two blocks over to get on a major thoroughfare. I walked arm-in-arm with Hank as he shuffled down the street. "No death marches, Mom" he remarked. Guess he remembers the last trip.... We finally hailed a cab that we could all fit in and climbed in. Hank and Charlie immediately fell asleep, and Lucy was close.

As we drove back to the apartment, I marveled at how different this experience was. No drains in his head...no overnight stay at the hospital...truly different. But at the same time, I started to feel the apprehension of taking care of someone who has just had surgery!

We got back to the apartment and woke the kids up. Hank immediately took of his coat, sat on the floor and started looking at all the respirator tubing that Dr. Gingrich had given him. We finally got everyone to lie down by putting on a movie. Hank said he was hungry and wanted pizza. And that is what we had! Less than seven hours after surgery, that kid was scarfing down pizza and drinking root beer! Amazing!

We have been watching Hank closely and we have been icing his face regularly. But I see the black eye appearing around his left eye and the bruising on his cheek. But I also see a beautiful upper lip, where there was none. And I see two eyes that are now even. And a sculpted and defined jawline. I see the face that was whole, before Parry Romberg Syndrome started to take all that away.... But more than all that...I see a boy who is growing up before my eyes. Who exhibits more maturity than many adults. Who inspires people to bravery. Who shows great compassion to others.

I see a boy who inspires me to be a better person. To act when I am compelled to do something. Hank remains stoic and brave. Courageous and strong. Don't get me wrong...he is still the same kid...the kid who was crying a little while ago because his eye is swelling and hurts and the plastic wrap on his face itches... But any of us would feel the same way. Hank has shown me the big picture. He has shown me what is important in life. I am honored to be Hank's mother. And I thank God everyday for giving me this family...to love and to learn from.

Back to New York We Go...

2009-12-01T19:36:00.000-08:00

Can't believe we are here! Back in New York City, and again, it is the night before Hank's surgery. And although we are here for the same reasons, so much is different this time. We've made it through the "big" surgery, and are back for the revision. And this time we are here as a family!
The flights from California to New York were pretty uneventful. We were fortunate enough to have kind ticket agents who worked hard to make sure we were all sitting together. Jeff sat with Charlie and Hank, who happily played their Nintendo DS games, and I sat with Lucy, who required quite a bit more attention...and all went pretty smooth...until Lucy dumped a cup of Sprite on my lap...leaving me soaking wet and not wanting to stand up for any reason! Luckily, that happened two hours into the flight, so by the time we landed at JFK, I was dry

At JFK, there was a serious lack of taxis to take us to Manhatten, but it gave the kids a chance to jump around a bit after traveling for 12 hours. We were all so excited to get in the taxi and thaw out and to share the sights with the little ones who would be seeeing it for the first time. And as Jeff and I pointed things out, we noticed that it started to get very quite in the backseat... All three kids had passed out and were sound asleep! Oh sure, they couldn't do that on the plane...

We arrived at the apartment and sat in the lobby as the security guards tried to figure out why they didn't know anything about our arrival. The apartment building is right across the street from the hospital and mostly doctors, nurses and med students live here. But Forward Face keeps an apartment for people like us...and for some reason this was all news to the security personnel. So there we sat...two adults, three children...all in overcoats, hats, and various other winter accessories...with four suitcases, 4 backpacks and one overnight bag. We looked like immigrants passing through Ellis Island! And then the best part...Lucy dancing around saying,"I need to poop!" Ah...good times!

I finally asked the guard where he lived and if he could cook? Because we had to stay somewhere... everyone was so nice and just doing their jobs, but we were so relieved when they cleared everything and escorted us to the apartment!!

We went out to Times Square and had a late dinner. What a great way to introduce Charlie and Lucy to New York City....Times Square..with it's bright lights and hustle and bustle. They were thrilled and Hank was so excited to show them the sights! But it was cold, and we were tired, so we didn't stay long.

We got back to the apartment and pulled out the beds in preparation of sleep. Hank has the day bed and the little ones are sharing the trundle. Jeff and I have the pull-out couch...and when everything is open, you can no longer walk across the room, but rather you crawl across beds to get to the other side. Right now, everyone is in bed sleeping. And I can see that Charlie's foot is on Jeff's...and they are in different beds! Luckily we are a tight-knit group and all really like each other! We'll see if Hank feels that way after surgery....

After a much needed night's sleep, the whole family woke up after 12:00 pm today! Of course we are still on California time... So didn't get to do much, but did have a nutrious brunch of "Dunkin' Donuts" and coffee! We finished up and headed for Dr. Siebert's office for Hank's pre-surgery consultation.

Going to see Dr. Siebert is like going to visit and old and dear, favorite friend. Our whole family was excited! Lucy and Charlie were finally going to put a face to the name and meet this mysterious person who the rest of us speak of so fondly. We walked in the door and Dee at the front desk, and Nilsa, who Dr. Siebert calls "The Boss", both greeted us warmly, with big smiles. The first thing they said was, "Hank! Look how tall you are!" And Hank smiled broadly as he intoduced his younger brother and sister.

After hanging up our coats...yes, there is a nice coat closet where you can actually hang up your coat...we were shown into an examining room to wait for Dr. Siebert. We didn't wait long...he came bursting in, smile on his face, twinkle in his eye, and a hand out for shaking. He is just the greatest guy! He was genuinely happy to see Hank and gave Lucy and Charlie high-fives, telling them that he has seen their pictures and heard so much about them that he feels like he already knows them.

Dr. Siebert sat down and took a look at Hank. He told Hank that he looked good and was pleased by his progress. He then told us what he was going to do in tomorrow's surgery. He mentioned a mid-face lift, lower eyelid lift, and putting some fat in his upper lip. He noticed a suture scar above Hank's eye where he had an eye-lift last time and said he would take care of that. As he scrutinized Hank's face, he reminded me of an artist, reviewing his work and looking how he can improve it. We showed him Hank's scar on his back where the tissue was harvested last time...the scar is really thick and raised, so they will be injecting some steroids into it to bring it down.

We talked about the surgery time and place and then just about Parry Romberg Syndrome itself and how more and more people seem to be coming forward with it. We wondered if there are a lot of people out there who are misdiagnosed and just finding out what they have. Or that for some people it is just so mild, that it takes them a longer time to seek treatment. But I seem to hear from at least one person every two weeks who is just now reaching out for help. It's exciting to know that this blog is reaching the people we intended it for! And Dr. Siebert keeps up with it and also refers his Romberg's patients to it. Hank is happy that what he is going through is helping others.

We took leave of Dr. Siebert's office, with him telling me, "see you in the morning, get a good night's sleep." "You too!" I told him as we walked out. We left the building and headed around the corner to Central Park. Hank knew how to get there and led the way. We were too late to go into the zoo, but the man at the gate of the children's zoo let us go in, even though we didn't have tickets. The kids thought it was great and loved seeing the amimals.

Afterwards, Hank and his siblings climbed on the giant outcroppings of rocks and "rescued" each other from falling off the "treacherous mountains". They were able to run and laugh, get dirty and just have some good kid time!

We hit FAO Schwarz on the way out and bought each child an "Ugly Doll". Hank got one the day before surgery last time and he took it to the hospital with him. So now he has a new one to go with him, and Lucy and Charlie have new friends as well. While at the toy store, we split up and Jeff and the boys looked at boy toys and Lucy and I got to look at all things pink and girly. I loved it! Dolls and Barbies...pink ballerina dresses and cute cuddly stuffed animals. Made me almost forget why we are here!

We finally pried the kids out of the store and went in search of dinner. The Upper East Side is not really conducive to children's restaurants, but we stumbled across a place called "Burger Heaven" and decided to try it. Kid-friendly and delicious. The kids had a good time and Hank had a big meal. (which is important since he couldn't eat for the rest of the night!)

So after a big day of fun...we headed back to the apartment to prepare for Hank's day of surgery tomorrow. The surgery is scheduled for 10:00 am eastern time. We are having the surgery in a surgery center instead of the big NYU hospital. And seeing as how this is flu season, I think we are grateful...

Hank has been in good spirits and is looking forward to getting through the surgery and recovery process. He spoke on the phone to Kyle tonight. (Kyle is the 20 year old in Connecticut, who had the same surgery as Hank when he was little) I overheard Hank tell Kyle, "I'm nervous about the surgery, but I am mostly just excited." And there it is. Again, Hank never ceases to amaze me! He can teach us so much. But I feel the same way...a little nervous, but mostly excited that this surgery can give him his face back...close to the way it was...and more importantly, gives him the chance to have a normal life.

Jeff and I have so much confidence in Hank's surgeon, Dr. Siebert. He is an amazing surgeon and a great man. I know Hank is in good hands, and although it is not easy, and we don't want our little one to go through all this...we know it is the right thing to do...the only thing to do...

One Week Away...

2009-11-25T10:07:00.000-08:00

This is it! One week from today, Hank will be in surgery! Can't believe it's here! How quickly the last five months have passed. Weren't we just there? But I think the stress is getting to me...

Tears are flowing. After a year of holding it together, I no longer can. Why now? Hank has been his usual stoic self. When I ask him how he feels about surgery, he gives me a big smile and a thumbs up. “Good!” he says. And I think he truly is….but I can see he is a little worried or maybe just apprehensive. After we got back from New York last time, Hank stayed pretty close by my side. But as the days turned into weeks, he became his old independent self.

But here we are facing another surgery, and Hank is gravitating back to me. Wanting to snuggle up on the couch, laying in our bed at night to read to me. And last night he usurped the little ones and actually slept in our room.

A few nights ago, Hank was in his own bunk bed, reading a new library book. “Look at this Mom!” he said to me. I climbed up and stood on the ladder to his top bunk. Hank was reading an enclyclopedia-type book (he loves reference books!) and was pointing things out to me. I was standing on Hank’s right side…his PRS-free side…his “normal” side. And I looked at his face…his perfectly beautiful face. And I felt my breath taken away. Here is this sweet and beautiful young boy…born into this world with a beautiful and whole face. And he has this awful disease that destroys half the face! How can this be?

When Hank had finished reading to me, I excused myself and went downstairs. And for the first time in a very long time….I cried until I couldn’t cry anymore. Through all of this…I have never asked “why”….but now I am asking… Why Hank? Why Kyle? Why Patrick? Why any of these kids? What do they have in common? How is it even possible that a disease that can destroy your face even exist?

Five days until New York. I don’t want to go to New York for the third time in a year! I don’t want Hank to go under the knife again. I’m tired…and I wish we could just go back to our “normal” life. But we must finish what we started. And it is exciting that we have a fantastic doctor in Dr. Siebert, who can give Hank the chance at that normal life! And I know that in spite of everything…we are lucky. Hank is lucky….we have found a way for him to get help. And we have a great family and great friends who are helping us get there.

So I am grateful…but I think it’s important for others facing this to know…that it’s OK to get upset. Or to get depressed. Or to just have a really good cry! Because you can’t help but mourn the loss of the normalcy that you once had. Or to have your heart ache for your child. But then it’s important to pick yourself up, count your blessings and continue to move forward.

I’ve had my cry….and I have to be honest…I’m one breath away from another good cry…those tears just sit at the back of my eyes, waiting for their chance…but it’s time to start to prepare and to pack for our next big adventure.

New York City during the Christmas season. How cool is that? The tree at Rockefeller Center will be lit the night of Hank’s surgery. And when he feels like it, we will go see it. Lucy and Charlie are going too, and they are going to be amazed by the bright lights and big buildings.

The preparations are going well. We have our plane tickets, thanks to the generosity of our good friend, Steven James, who donated his frequent flier miles to get all 5 of us to and from New York! And since nothing ever goes 100% smooth…we will have to adjust our seating…since the plane is full, we have just two seats together and then we are spread out. I can’t imagine 4 year old Lucy sitting in the middle seat between two strangers…but of course I have a plan for that. “Here is your barf bag Honey”, I will say as I hand her a paper bag. I bet those people will be clawing the seats to trade with me! Always good to have a plan!

We have the “Forward Face” apartment booked for our time in New York. Sleeps four, so it will be a little tight, but the kids are small, so it should be OK. We’ve made contact with the Richard Family and have hopes of going to Connecticut again to visit with them. And of course we have the main event…the surgery, scheduled for Dec. 2nd! Not sure how things are going to work out with Lucy and Charlie in tow…but we will figure it out!

We got Hank’s 3rd grade school picture a couple of weeks ago. Wasn’t sure what to expect …and I am thrilled! Hank looks beautiful! What a difference a year makes! I think Hank is always beautiful….but I know how kids are…and it breaks my heart that when Hank looks in the mirror, he doesn’t see what we see…a mirror is 2 dimensional, so for someone with a facial anamoly, it is not kind. But now Hank can see what I see! That he looks GOOD! Sure, now he is asymmetrical to the other extreme…but that is what this next surgery is for. So, although I dread this next surgery…I feel renewed by the fact that as we thought…the surgery was the right decision.

Tomorrow is Thanksgiving. And this year, more than any other...we have so much to be thankful for! I think Hank said it best..."Mom, we had to write in class, what we are thankful for... Want to know what I wrote?" he asked. "Yes, please, " I replied. "I said I am thankful for my house, my yard and all our animals," he said proudly, "and for my family and for the Richard family," and with a huge smile he finished, "and for Dr. Siebert!" He gets it...Hank gets WHY we are putting him through all this. That is enough for me. As long as he knows... And so our journey continues….

One Year Later

2009-10-17T15:34:00.001-07:00

It's been one year. One year ago I received the call that would forever change our lives. The call that said, "I know what it is." Those were the words spoken to me by Hank's pediatrician. Time stood still and I will never forget exactly where I was standing, where the rest of the family was and what we were doing.

The family was in the car preparing to leave for Open House at Hank's school. I was just walking out when the phone rang...and I could see that it was the doctor's office. I remember feeling flushed and my heart feeling like it was going to beat right out of my chest. We had just been to the doctor that afternoon, after realizing that Hank's face was changing...that his cheek was wasting away. The doctor had been at a loss...and we were scheduled for a head X-ray the next day. I didn't expect a diagnosis at that moment. I had no idea why he would be calling...

And when he said, "Hank has Linear Morphea, I felt like the floor had just given way under my feet. It didn't sound like something simple...it sounded terrible. I typed it into my computer and the word, "Scleroderma" popped up. I know now that there are two kinds of Scleroderma..."Systemic" which affects internal organs and is life threatening and "Localized" which is in one location and affects skin, tissue, muscle and bone. But at the time, all I knew about was the systemic and I was scared to death.

I grabbed a pen and wrote frantically as the doctor talked about Parry Romberg Syndrome, the Cranial Facial specialists at UCSF...x-rays, cat-scans, MRI's, blood work... my head was spinning... and then our conversation was over...and I called my mom and quickly told her the news.... and then I joined my family in the car for what was supposed to be a fun evening at the school. I'm sorry to say that I don't remember a lot about that night at the school. But I do remember trying to keep it together and not let on to Hank that anything was wrong...and trying not to stare at him as the realization that he truly had facial atrophy and that we had to stop it.

That phone call triggered months of research for us. Trying to figure out a way to stop the disease.... Those were dark times...keeping it a secret from everyone but immediate family... dragging Hank to doctor after doctor...trying to act "normal" for the kids and the rest of the world...lonely times and desperate times... Times I would like to forget...but times that I need to remember. I can only appreciate where we are today, if I remember where we've been.

So here we are one year later... what a difference! We've been through so much and have gratefully risen from the depths of despair. Finding Dr. Siebert in New York was such a Godsend and gave us the hope we needed to make it through!

Today Hank is good. He is feeling good, and he is looking good. This year's Open House was so different! Calm and fun...free of the desperate feelings we had last year! I still have questions, and I wonder if the disease has been arrested...but we will find that out when we go back to New York in December for Hank's second surgery. In the meantime, we give thanks for getting this far and for having the ability to connect with others with this disease.

Last week, I received a message from a young man living in Tennessee. He is 20 years old and has been living with Parry Romberg Syndrome since he was 4 years old. He was misdiagnosed for 10 years before they figured it out. He told me he has had numerous surgeries and wasn't sure where to turn. From the sounds of things, his disease has progressed to the bones. I asked how he found me and he said that he had been thinking "Facebook - Parry Romberg" for about 2 weeks and had finally sat down and checked it out. He went to Facebook and typed in the words Parry Romberg Syndrome and found Hank's group, and found me.

When I signed up for Facebook, I knew it was a good networking tool and not only could I reconnect with old friends, but I could use it to spread awareness of PRS as well as notify people of Hank's progress as well as his fundraisers. But the one thing I have wished for through all this, is to help someone else find the right treatment for PRS. I am so excited that this young man found me. I have put him in touch with Kyle, our 20 year old friend on the east coast who also has PRS, and I hope these two can share their experiences and build each other up! What a great gift...to find someone your own age who has gone through what you have gone through.

This young man, Bryan, has also reached out to Hank. He told me, "Ma'am, I am 6'3" and weigh 210 lbs. I have served our country in the military....I go to college, I have a girlfriend and I am going to go to law school. You tell your son that he can be anything he wants to be. This disease will not limit him. He can play football if he wants!" It brings tears to my eyes to think that this guy, with his own PRS issues, wants to mentor our young son. Although we can't meet him this trip, we are hoping to meet up with him soon, especially since he might take a job on the Central Coast... Now that would be something...to have him living near our hometown!

I see God's hand in all of this. I told Bryan that when you feel strongly compelled to do something, that is God showing you the way. There are no coincidences and when you really listen, the path becomes clear.

And Bryan isn't the only one we've heard from this month. I received a heartfelt email from a woman in North Carolina, who's 14 year old son has PRS. She is at a loss, as she thought his atrophy was due to numerous teeth being pulled years ago. Now she finds out her son has Parry Romberg's and needs information. I know how she feels...that was me a year ago! I called her and gave her Dr. Siebert's contact info and I hope they connect!

And another mother who has followed Hank's story took her adult daughter to Dr. Siebert. She had her big surgery just a week ago and is in the healing process now. Such exciting news! And of course there is Megan, who we met in San Luis Obispo last month. Still can't believe Hank had the chance to meet another person with PRS, and in our hometown too! Megan calls Hank her "hero"...he's mine too!

We have had more fundraisers this month for Hank. The Texas Hold'em Poker Tournament was fantastic! It was held at my sister and brother-in-law's winery, McConnell Estates, and we had a great turnout. My brother-in-law, Chuck, has a friend named Rodney, who put the whole thing together. We had some serious poker players there and a few of them didn't realize it was a fundraiser for a little boy. After someone would get knocked out of play, I would thank them for coming and let them know that their support for Hank is much appreciated. I had one guy say, "Where is that guy, Hank? I never even played with him all night!" Uh...yeah...that's because Hank is a kid and we don't let him stay up late playing cards... So funny! But no matter the reason they showed up, their being there helped us raise some good money towards Hank's next surgery!

The next day was a Saturday and there was a free concert at the winery. It was a Johnny Cash tribute band called, "Cash Tribute". The lead singer, Jim Garner, looks and sounds just like a young Johnny Cash. As a lifelong Johnny Cash fan, (yes, I was in the "Johnny Cash Fan Club" as a kid) I was really excited about this day. My sister Patty and her husband, Mike, let us set up a table and sell water and soda to benefit Hank. We didn't make much money, but we educated about 60 more people about Parry Romberg Syndrome. Every little bit helps and the more we get those words into the general public's stream of consciousness, the more it will become a known disease. And maybe we will catch the eye of a researcher who wants to find the cause!

Not only did we get to enjoy the sunshine, listen to great music, eat good food and raise money and awareness for Hank...but we got an added bonus. Four year old Lucy developed her first crush. Typical groupie...she is in love with the the singer of the band. Can't really blame her...he is very good looking and sings like Johnny Cash! After he was done singing and hanging out with his family...I looked over to see Lucy sucked up next to him. He gave her an autographed picture that she carries everywhere and she calls him "that guy I love." She even has gotten out her little princess piano and says she is going to take it to the next concert so she can play music too. It's too cute...but I am thinking it's too soon for this...but then I remember that Lucy's cousin was in love with Disney's "Pocahontas" when he was her age...

Six weeks until we return to New York. We are busy planning the next fundraiser and gathering as much information about the next surgery as we can. I have put out emails to those who have gone through the revision surgery, to find out all the details. Knowledge is power and we don't want to be unprepared! We are taking Lucy and Charlie with us this time. Seventeen days without us was much too hard on them. Besides, I don't think they will let us out of their sight! But I think having them with us will present new challenges...but we will focus on the positive and let things fall into place.

As I reflect on this one year "anniversary" I can see that our path has not been easy. And being the parent of a child with a rare illness is extremely difficult. Be we are blessed to be surrounded by our supportive family and great friends. Hank is a stronger person as a result of what he's endured. These Oct. 2008 and Oct. 2009 photos tell the story of how far Hank has come!

Jeff and I are stronger too, and we can see that anything is possible. But I realize that we have sort of lost ourselves during all of this, and we need to start the road back to taking care of ourselves and doing those things that we enjoy. So for us, this is our new year...and we have our "New Year's Resolutions"... exercise, take care of our health, have fun as a family, do those things that we enjoy, remain focused on getting Hank the help he needs, raise PRS awareness and help others find the path to treatment.... I think we can actually keep these resolutions...!

Navigating Third Grade

2009-09-30T23:37:00.001-07:00

Hank is good. He is really good! Little by little I see things that make me think the surgery was a success. Hank used to cringe and complain that his scalp hurt every time we combed his hair. But a couple of weeks ago, I watched as Jeff combed Hank's hair and Hank sat there quietly not even noticing. It took a minute for it to register in my brain. "Hank's head doesn't hurt! He's not sensitive like before!

Or at school, when I witnessed a friend being very unkind to Hank...I saw Hank dash away to the other end of the playground with his hand up towards his eyes. I figured he was crying and rushed to his side. But he wasn't crying...he was close...but he was hanging on with all his might to keep the tears at bay. He has never been able to have such control when his feelings have been hurt.

And three weeks ago, when his dad was getting ready to go to karate camp, Hank begged to go too! What? You want to go to a two day camp, out in a dusty field, where you do nothing but karate? Without your brother? This was new! All of sudden Hank wants to do new things, by himself and without fear.

Physically, Hank is feeling good. He finally weighs over 50 lbs, and has grown a couple of inches. His face looks good and the people that know him are amazed! But, he does look different than he did last year...his face is fuller and looks "overstuffed" due to more tissue being on the left side. (will be used in the next surgery) So Hank has had to endure the stares and questions that his classmates pelt him with

As his mom, my heart breaks for Hank. First day of school, a boy asks Hank, "Why is your face so puffed-up on one side?" Hank took it in stride and explained that he has Parry Romberg Syndrome and had to have surgery. He even showed the boy the scar on his back...to which the boy replied, "Holy Cow! That is COOL!" And then called the other boys in the bathroom over to see it. Hank was happy when he got home from school. "Mom, I have never had that much attention at school!" he said with a grin. But as the days went by, more and more boys stopped him in the bathroom to ask about his face. Some were kind and some were rude. And the fifth grade boys were just intimidating.

Hank said to me one day, "Mom...you said no one would notice my face!" Did I say that? Yep...sure did! "I'm sorry Hank...I didn't think anyone would! You just look so good...but I guess you DO look different than you did in the spring." "Yeah, I guess I do..." Hank said with a hint of sadness and wistfulness in his voice. UGH! Hasn't this kid been through enough? Two trips to New York in four months...dragged from doctor to doctor....blood tests...biopsies....a major 8 hour surgery....the knowledge that he has this terrible disease... And now he has to be ridiculed and reminded that he is different every single day? It's too much! Those kids don't understand what he has been through. And I hope to God, they never have to walk in Hank's shoes...it's not easy...so Hank has good days and bad days...but he handles it all beautifully. So now when someone on the playground or in the bathroom asks him about his face, more often than not, he just says, "It's a long story..." I think he is so courageous!

With that said...I am not one to take something lying down... Kyle, our friend in Connecticut who also had PRS as a child and has endured many surgeries, called to talk to Hank and told me that he too, had similar things happen after his first surgery. Kyle said he thought his mom talked to the school about it and somehow they told all the kids. Kyle's advice was to just "get it out in the open." He suggested that the teachers talk to the students and tell them that Hank looks different because he has Parry Romberg Syndrome and had surgery.
And so with our blessing, Hank's teacher went and spoke with the other teachers, filling them in on Hank's condition, surgery and the way the other children were treating him. I wasn't sure which day it would happen, and anxiously waited to hear how it went. Each teacher then talked to their classes...I SO wish I could have been there...not knowing what the teachers would say and if they would be able to answer the kids' questions.

One morning, as I dropped Charlie off for kindergarten, Charlie's teacher took me aside, "My daughter came home from school last night, talking about Hank," she said. "She told me that she and her friends sought Hank out on the playground just to say hi, and then she sat down at the computer and made a card for Hank," she said happily. I was so surprised...and relieved! This was great...a positive response!

I walked out to the parking lot, with Lucy in my arms, and spotted another mother who I know, talking with a group of moms. "Hi," I said as I walked up, "Did your daughter mention if the teacher talked to her class about Hank?" I inquired. "Nooo...she didn't, but we know Hank, so she probably wouldn't think anything of it" she responded.

She turned towards the other mothers, who I did not know, "Hey, did the teachers talk to your kids about Hank?" she asked. They looked thoughtful and started nodding..."Yes, I believe so," said one woman. "I don't see what the big deal is..." said another, "Kids are just curious..." she continued, "I mean, the kid has some freaky weird disease...of COURSE the kids are going to be curious! How do they know it's not contagious?!" Silence. Staring. Silence. I was stunned! Well no wonder the kids are giving Hank a hard time, if this is what the parents are saying! I felt sick as my stomach dropped to my feet. I quickly regained my voice and said, "Well, the kids didn't know he had an illness, and just noticed he looked different. It's OK to ask questions and be curious, but there is a nice way and a rude way to ask. And it gets tiresome to have to be asked about it every single day," I said, as I worked hard to keep my anger in check.

She nodded and started to continue her rant, but then I saw the look on her face change, as she abruptly stopped and asked in a small voice, "Are you Hank's mom?" I looked at her in silence. And let her question hang in the air a moment before I replied, "Yep." And then her voice raised about two octave's as she turned different shades of red and said, "OH....it's SO nice to meet you!"

The humor of the situation was not lost on me. I love it when people open their mouths and say stupid things and then get caught and feel like fools. I think it's hilarious! But at the same time, I was heartsick for Hank, knowing that the questions would not stop...that if the parents were this ignorant, then there was no hope for the kids! And this from a Christian school!

But I also know that for every rude and intolerant person I come across, there are ten good, and kind and supportive people to lift us up. Hank's teacher is wonderful. She's a mom and she understands how I feel. I am so grateful that she took the time to talk to the other teachers. She is proactive and she is kind. I didn't realize that with Hank in third grade now, he would be on the playground with fifth graders. I hadn't anticipated that there might be problems...but with Hank's great attitude and his supportive teacher, I have to put it all in God's hands, and stop worrying. I still occasionally ask Hank if the kids say anything about his face. I think most days they do. But he is stoic, and doesn't complain. He has a great inner strength...and we are just taking it one day at a time!

Can't believe it's already October! Where has the time gone? I have tried many times to sit down and write...but I couldn't...emotions have been up and down with Hank's issues at school...and all we are really wanting is for a nice normal life. But when you have a rare illness, I guess there is no such thing as "normal". But we do our best and have some fun along the way. We've managed a few fun things in the last two months... the State Fair, a Rivercats game, swimming, boating and of course our favorite...waiting for the Ice Cream Truck!

Last weekend, we loaded up the car and headed back to our home town of San Luis Obispo. Our friends were holding a "Drive-thru" BBQ for Hank. It was amazing! I had been down a couple of weeks before to help out a bit...distribute tickets, hand out flyers, and figure out where we were going to get our supplies. We got there a couple of days before the big event and I went shopping with my friends, Nancy and Stacey, to get all the paper goods we would need. We planned to do about 500-600 dinners and knew it was going to be a big undertaking.

I am amazed at how people pitched in.

The fundraising idea was started by our friend, Keith, who worked with me when I was in the home building industry and was also our next-door-neighbor. Stacey and Nancy joined in and gratefully, Dave Auten headed up the cooking and also got beans donated from the restaurant where we all used to work, F.McLintock's.

And then other people joined in...Friends from high school, jr. high, elementary school, waitressing days, health club days, college days...builder days...friends we hadn't seen in a long time!

Jeff's former company, Casey Printing, donated the printing of the tickets, an associate of mine, Susan Rees from The Image Factory donated the artwork for the tickets. And our dear friend Todd, let us use his salon, The Blade Runner as a headquarters for ticket sales. Not only that, but Jeff's real estate office, Century 21 Advantage let us sell tickets from there, in Santa Maria. We had two locations in two different cities.

We had about 20 people who sold tickets, collected donations, and then showed up the day of the BBQ; to assemble the food, BBQ the tri-tip, collect tickets, run food out to cars, etc. We were so lucky to have Dave and Paul leading the BBQ team. Unarguably, the best BBQ-ers on the Central Coast! Everyone worked so hard and we had so much fun! Hank was on hand to witness it all, but also thankfully, Jeff's mom was there to keep the kids entertained on the playground and Nancy's teenagers were there to swim with our kids.

The event was held at the Elk's Club, where my Dad, Ed Adler, was a member and the bartender for many years. It was sort of a memorial for him in a way...that the Elk's would donate the use of the facility to help out their old friend's grandson. It was a bittersweet day for me. Being inside the Elk's Club, where we had spent many different occasions over the years...made me really miss my dad. But I felt my his presence as we joked around and chatted with friends. Dad loved people and I know he would have loved this event!

Friends and relatives came by to pick up their food. I saw classmates from long ago, their parents, old friends who I hadn't seen in a long time and we made new friends too! It was an incredible day! The fact that it was our wedding anniversary made it all the more special. Wasn't the way we had planned to spend the day, when we started thinking about what to do on our anniversary...but we couldn't have had a better day...with our children by our side, surrounded by the people we love, many of whom came to our wedding, and in the town we got married in.

And as if this weren't enough...Hank had the chance to meet someone else with Parry Romberg's! Through "The Romberg Connection" I have made contact with many people. One of them, Megan, lives in the SLO area. We had emailed a couple of times and are Facebook friends. We met for the first time on Friday morning....an early morning coffee chat. Megan was stricken with PRS when she gave birth to her first baby. Adult onset...she got progressively worse and had surgery about 10 years later. She looks great! Looking at her, you would never know. We shared information about the illness, and she told me about her experience with it. We talked about possible causes and theories...always searching for the common link. But everyone is different and it makes it hard to figure it all out.

Megan came to the BBQ the next day, ready to work! She could have just stopped by but she wanted to be a part of it...wanted to help! How incredible is that? I introduced Hank to Megan and told him that, "This is Megan. She has Parry Romberg's too." Hank's eyes grew wide and bright as he looked at her. "You do?" he asked. "Where?" he said as he studied her face. Megan showed him where her face is affected. She told him she had surgery some years back. "Do you still have Parry Romberg's?" he asked. Megan told him she did. I could see that her answer confused Hank. We have told Hank that his surgery was to get rid of Parry Romberg's. And now here was Megan saying she had surgery, but still had PRS. "Oh, Megan had a different surgeon," I told him. "She didn't go to Dr. Siebert." "Ohhhh," he said, and I could see that it made sense to him, since Hank's doctor is the only surgeon in the world who does the micro-vascular surgery that Hank had.

It was a special moment when Hank and Megan met. Hank is the first person Megan has ever met with PRS. And with the odds something like one in 6 million, it's no wonder! But here is Hank, diagnosed less than a year ago, and already has met three people with PRS!! It's such a great gift to meet people who have the same illness. To meet people who understand and who look similar...priceless...something to treasure!

The BBQ wiped us out. So instead of driving home the next day, we decided to spend one more day on the beautiful central coast! I felt like we didn't get any quality time as a family...running errands separately, spending Friday afternoon at Hank's naturopathic doctor's office, and then the BBQ itself. So a day of family togetherness was called for. It was great...lunch at "Fat Cat's" in Port San Luis, and then we went down to the beach. Being a coastal girl, living in the valley is a huge change. Sometimes I feel so landlocked...as a result I can't come to the coast without putting my feet in the ocean. So that is what we did. The kids had a ball, running in the waves, building sand castles, and getting soaking wet and covered in sand. Perfect!

Once we got home, I sat down and went through all the tickets and checks from the BBQ. Our HH4H BBQ volunteer team was dying to know how we did. And we did great! Really exceeded all of our expectations! It was so exciting to announce to them that all their hard work really paid off!

And so, although we wish that life were different and that our sweet young son was not faced with such a devastating disease...we count our blessings every day. We are so grateful for the friends we have and have been able to reconnect with, who give selflessly of themselves for Hank. The dedication and generosity of our Central Coast friends has overwhelmed us...we are so blessed to be embraced by two communities...the hometown we left behind and the community in which we live. All of these people have shown our young son that there is good in this world and how people take care of one another! The lessons he learns each time people reach out to him, go a long way in shaping the man he will become!

We continue to move forward...more fundraisers, Halloween, another fundraiser, Thanksgiving, another trip to New York and another surgery....Christmas...and so it goes...

Infection?

2009-08-10T16:54:00.000-07:00

It's been a week of ups and downs...not even sure where to start. Summer is winding down and school starts in just two short weeks. Mixed emotions around here. Charlie is thrilled to start Kindergarten. I am sad that my days of leisure are ending and I go back to being a taxi service managing three different pick-up times! Lucy loves everything... and then there's Hank. Hank is not excited for school to start. I don't blame him. He got ripped off this summer! Surgery and recovery have eaten up a big portion of it. But we have managed to squeeze in some fun here and there!

Last Friday, August 1st, the kids had a great time at karate. It was kid's night and they got to play games and eat pizza...and Jeff and I had a few hours to go on a quick date! It was so nice! At 9:00 we picked the kids up and came home. At about 10:00 pm (oh, did I mention that the kids don't go to bed before midnight these days?) Jeff came into the room and asked me if I had felt Hank's face lately. I said I had and asked why? He said that Hank's face felt really hard. And that it looked weird. I looked up from the computer screen and saw the look on Jeff's face. It's one I don't see often...reserved for serious situations, painful news or extreme stress. I jumped up and rushed to Hank's side...in the calmest way possible, so as not to arouse suspicion from Hank.

I placed my hands gently on Hank's face. Both sides felt the same temperature, but the left side was definitely more than firm...it was hard. I looked at Hank's face and saw redness...and darkness...but he has had bruising since the surgery, so that wasn't out of the ordinary....

I tried to feel Hank's cheek by gently pressing on it. He hates his cheek touched...and he said, "Ow!" "Does that hurt?" I asked as I quickly pulled my hands away. "No...but it's tender and uncomfortable. I don't like it when my face is touched," he told me.

I looked up at Jeff and we both had the same thought..."something is wrong." Jeff suggested that I email Dr. Siebert and maybe we would hear back from him in the morning. I sat down and wrote a quick email to him. I tried to sound calm...but that I was worried....and then I titled it in a way that would get his attention: "We are FREAKING out!" I have been pretty even keeled through all of Hank's medical appointments and procedures. So I knew that Dr. Siebert would know it was serious.

Sure enough, about an hour later the phone rang. I could see on the caller ID that it was "University of Wisconsin" (abbreviated of course) and knew that Dr. Siebert was calling. I picked up the phone and heard, "How are you?" "Worried," I said. "Tell me everything," was his reply. He said he had just gotten out of surgery and saw my email. I finished telling him what we observed and he asked if I had a digital camera, "Take some photos right now and email them to me. I will wait for them," he instructed. Poor Hank, as if he hasn't been through enough... Jeff called Hank from the playroom where he was half awake, watching a movie with a now sleeping Charlie and Lucy. "Hey Hank, we need to take a couple of photos of you for Dr. Siebert," Jeff told him. I had Hank climb onto his bed, so I could use the blue background of his wall. I took a few shots, almost blinding Hank with the flash, in the process. It was hard to show the discoloration, but they were good enough, and I quickly downloaded and sent them to Dr. Siebert.

He called back immediately. "Hard to tell from the photos...wish I could examine him," he said. "But it looks like an infection. Cellulitis. Do you have a 24 hour pharmacy? Let's get him started on antibiotics." My heart sank. Cellulitis? A bacteria infection? In his FACE? At four weeks post surgery, I thought we were in the clear...how could this be. But Dr. Siebert is always cool, calm and collected. "Don't worry," he said. "This will take care of it." I gave him the number of the pharmacy and he told me he would call back. He called back and told me the name of the antibiotic. "Should we be getting on a plane? Because you know we will," I said. "Let's not do anything yet," he said, "I'll call you this weekend and see how Hank is." "Is the flap failing?" I asked. "No," he replied. "Have you ever had one fail?" I persisted. "Not at three weeks!" he said, "Never! Don't worry. He will be fine!" And with that we were on our own for the night.

I think Dr. Siebert is the greatest! But living in on the west coast and having your doctor in the Midwest or east coast, is not easy. Particularly in this case. But I am so grateful he called. By the time we got off the phone, it had to be 3 am in Wisconsin. What a guy!

Jeff took off at 1am for the all-night pharmacy. And at that time of night, only the really wholesome law-abiding citizens are in the drug store! (scary!) So now I was worried about Hank's infection and Jeff's safety! While Jeff was gone, I got online and read everything I could find about cellulitis. I found out it is a bacterial infection under the skin which can infect tissue, connective tissue, etc. Left unchecked it can be fatal. NICE! It's caused by two different bacterias...strep and staph. Now how in the world did Hank get this?

We woke Hank up and gave him his first dose of antibiotic and prayed that it would do the trick. We stayed home all day and kept Hank quiet. That night, we had a birthday party for a friend to go to. We had so been looking forward to this party and the chance to celebrate a good friend's birthday. But all of a sudden, we did not want to go. But Hank did not have a fever and was feeling good, playing with Lucy and Charlie. The sitter arrived and we filled her in. The party was in the neighborhood and we told her we could be home in a moment's notice! She promised to call if Hank started to feel badly, and filled with trepidation, Jeff and I left for the party.

It was a great party! The birthday girl looked beautiful, her husband had outdone himself and all went well. And even though we had a good time, I know we weren't ourselves and just hoped no one noticed. Because no matter what...the dark cloud of worry hung over our heads and we couldn't even bring ourselves to karaoke! I checked my phone throughout the night and was dismayed to see that I had missed Dr. Siebert's call! I listened to his message, which did not leave a return number, but he promised a call the next day. Darn! I knew I would miss it!

We got home and Hank was still up. Bright eyed and raring to go! Didn't look to sick to me! But I could see that the infection was still present. So we sent him to bed and began our second sleepless night, filled with worry. Dr. Siebert was true to his word and called first thing in the morning. He told me that it might be nothing, but let's finish out the antibiotic and see how things are. I asked if we should keep Hank quiet and restrict his activities. "No...let him have fun. It's fine!" he told me, "Don't worry. Seriously. He's fine!" OK, good enough for me, and with that we resumed life...keeping an eye on Hank, but no longer worrying every minute of the day.

With the worry behind us, we spent Sunday at my sister, Patty's house. Hank had a great time playing with his cousins in the pool, although we prohibited all diving. Dr. Siebert cautioned us with a "Don't let Hank belly flop on his face!" Good idea... Nice to just relax around family and hear about other people's lives!

We celebrated Hank's little sister, Lucy's 4th birthday last week. Pink...everything was pink...complete with streamers, balloons and princess decorations. It looked as if a bottle of Pepto Bismal had erupted all over our house! Lucy was the star of the show as she flitted around the house in her pink "it's my birthday" shirt and polka-dot shorts, and tiara. A morning of watching "Strawberry Shortcake" videos and anticipating her party made for a little girl's delight. Since Lucy hasn't formed any big friendships yet, except for the two family friends who were out of town, we made it a family party. But with five older cousins ranging in age from eleven to seventeen, and only one a girl, I was afraid that little Lucy would get lost in the mix.

But Lucy didn't care. She was caught up with the excitement of the day. She just wanted her cake, ice cream, decorations and presents. With my mom, "Grandma" there and Jeff's dad, "Granddad" there, she was feeling like the most important gal in the room...which she was! Lucy has been asking for a Nintendo DS since about three days after Christmas. That was about the time she realized that the new games that Santa brought her brothers had captivated their attention and she was now odd-man-out. And so for eight months Lucy has wished, asked, whined and begged for a DS. And so she got her wish...a brand new Nintendo DS...in metallic PINK. Lucy is the happiest girl ever and has been carrying it with her every minute of every day, proudly displaying it for all to see. Jeff and I are now experiencing a peace we haven't known in many months...no fighting over games....just the blissful sounds of little hand-held games being played and the laughter of siblings as they share what their game can do! Priceless!

Each day, Hank's face has looked a little better, and his energy level has been high. Our days have been filled with the park, the backyard, cousins' houses and friends over. We've had "stay- in-our-pajamas" days and sleep-in until 11:00 days! (It is going to rock their world when school starts!)

We have had some nice visits with friends..."Aunt Susie" came by and brought Lily and Jackson over for a playdate with Hank, Charlie and Lucy. We hadn't seen Susie since our time together in New York. That was such an emotional time for all of us. Saying goodbye to Susie the day before Hank's surgery was heart wrenching for us. I didn't realize she wanted to stay for his surgery, and had never dreamed of asking her to do such a thing! But she had come so far with us and not to see it through...that was tough...but here we all were exactly one month later, and now able to see the progress Hank has made. I was wondering if the kids would notice Hank's face. Although they knew about his illness and surgery, they never said a word. Proving to me once again that children have a wonderful innocence and ability to accept each other for who they are and not what they look like!

Throughout this ordeal, we have tried to stay positive and keep our eye on the goal...getting Hank the help he needs so he can be well and have a "normal" life. And I think for the most part, we have been able to stay focused. But it hasn't been easy. After getting home from New York, I felt myself wanting to shut down. Not wanting to get out of bed. Not wanting to see friends. Just wanting to circle the wagons and hunker down with my little family. We had been apart and now I just wanted them all to myself. But more than that, I felt lost. What am I supposed to do now? After being proactive, it was now just time to sit and watch...and wait. Wait to see how Hank does.... And then Hank didn't want to go anywhere. Was he feeling like I was? Or was he just so happy to be home, he didn't want to leave...? I don't know. But all the kids continue to sleep together, rotating from room to room, wanting the space from each other during the day, but craving togetherness at night.

So here we are over a month has gone by since Hank's surgery. And Jeff and I are still struggling to get back to some normalcy. My friend, Noeleen who lives in Ireland has a daughter who went through the same surgery a few years ago. Noeleen has been urging me to take care of myself. But quite honestly I'm not sure how...She mentioned something the other day, that because of all the stress, we as parents endure, we need time to reabsorb all that has gone on. Maybe that is it... I'm glad to know that it isn't just me...that others feel this way too when they get home. I know I need to snap out of it. And I am trying. In the meantime I take my girlfriends' advice (they think they are my mom...)..."fake it until you make it." Sounds silly...but the more I say it the more I am able to function and continue with daily life.

With another surgery right around the corner there is fundraising to do and plans to be made...so that's it....time to snap out of it and regain the momentum. But I mention it so that the other parents who go through this know that it's not unusual to feel this way! Hank's infection scared us. We didn't expect it and even now we aren't even sure he really had an infection...but I am grateful to Dr. Siebert, who erred on the side of caution and took quick action!

And so as summer comes to a close, and we prepare for school...we try to squeeze all the fun, leisure and freedom we can from it...like chasing the ice cream truck for two blocks after it blasts past our house...only to have Jeff go zooming by in his truck giving chase. And then triumphantly returning leading the ice cream man back...music playing, children bouncing up and down...dog escaping down the street....ahh...summer memories!

Clearance to Swim!

2009-07-30T00:27:00.000-07:00

Three weeks post-surgery. Has it only been three weeks? Has it already been three weeks? Time seems to be suspended as we eagerly watch Hank's face for signs that he is healing. Each day he looks more and more like his old self...after getting used to the atrophy on the left side of his face, we are now trying to get used to the fuller-than-full left side of his face. He has lots of energy and wants to be outside and doing things!

I am amazed at the quick recovery of this child. Hank has always worn his emotions on his sleeve...and I think because of it, he sometimes seems younger than he is...but really, he has shown us that he is much older than his eight years. He is strong both physically and mentally. He is stoic. He is brave. He marches on...and so do we.

Lucy and Charlie are so happy to have their big brother home and don't like leaving his side. They have all taken to sleeping in the same room. Alternating between bedrooms and the playroom. I think the separation was hard on all of them and they are making up for lost time!

The first week home, we truly spent AT home. Hank did not want to go anywhere. I wasn't sure if it was because after 17 days away, he was just so happy to be home...or if he just didn't want anyone to see him yet. So we very slowly started to have him around other people. First just his Aunt Barbara, Uncle Chuck and cousins Christy and Nick came over to welcome Hank home. He happily showed them the incision on his back and seemed very comfortable. "OK, he's good with family," I thought.

The next step was the ice cream social at the Montessori School that Lucy and Charlie attend. The directors of the school, Christine and Julie were all smiles when they saw Hank, and welcomed him home. Hank seemed completely comfortable with being around other people, many of whom have supported many of our fundraisers. One of the teachers (who is also a parent), Sandra came over to say hello, along with her husband. They were so glad to see us and wanted to know how Hank was doing. They had followed along with the blog and were up to date, and had been thinking about Hank. Hank didn't seem to mind that we talked about his surgery and recovery. "Alright, we are making progress," I thought to myself.

That night, I sat down at the computer and was looking at photos of Hank. He came in and sat with me. "Look how much better you look now, than right after surgery," I said to him. We then looked at some pre-surgery photos. "Look how thin your face was," I continued. Hank studied the photos and then said, "I miss my old face," as the tears started to spill over his eyelashes. "I know..." I told him, "but your face was changing and we had to do the surgery." He nodded, but the tears silently ran down his face as he buried his head in his arms. "Oh no!" I thought. "What am I going to do? How am I going to make him understand that we had no choice?" I really thought he understood.... And then I had an idea....

After Hank's surgery, we spent time in Connecticut with the Richard family. Their son, Kyle, had the same surgery 15 years ago. I have never shown Hank the pre-surgery photos of Kyle. I have never wanted Hank to know that this disease is progressive. I didn't want him to spend his time worrying what might happen...but I realized that my back was against the wall and I had no choice.... "Hank, do you want me to show you what Kyle looked like when he was little? Before he ever had the surgery?" "Is it bad?" he asked. "Yes, very bad," I told him. "Will it give me nightmares?" he asked. "It might...but I think you need to see them." "Ok, I'm ready," he said. I went and got the board that my sister, Barbara, created for the winery fundraiser. With Kyle's permission, we put his before and after photos on a board, to show what Parry Romberg Syndrome really looks like, since Hank had not progressed as much.

Jeff came in and sat on the bed next to Hank as I walked in with the board. "Hank is upset," I told Jeff, "It's time for him to see Kyle's pictures, do you agree?" Jeff said he did and I asked Hank if he was ready. "Ready," he said, and I turned the board around. Hank's eyes widened as he studied the photos. "Whoa..." was all he said. I explained that Kyle had been suffering with PRS for about 4 years by the time he had his surgery and it had progressed all the way to the bone. "So that is what can happen if you don't have the surgery?" Hank asked. "Yes," Jeff told him. Hank quietly studied the photos, looking first at the pre-surgery photos and then focusing on the post-surgery photos. "Kyle looks good now," he said. "OK, I'm glad I had the surgery!"

And that was that! (whew...huge exhale)

The next outing was church. Hank happily embraced our priest, Fr. Soane, who was so pleased to see Hank back from his adventure. That was a day where I prayed in thanksgiving. "Thank you God for getting us this far, Hank is home. He made it through the surgery. Hank is alive!" (not that anything was life-threatening, but you just never know...right?)

After Hank had been home for 10 days, we ventured to his friend, Colin's, house for a playdate. Colin has younger siblings that are the around the same age as Charlie and Lucy, so it works out good for all of us. Add in that their mom, Cathy is a good friend, and it's perfect! I watched the kids as they greeted each other...waiting for someone to mention Hank's face....nothing. They didn't even notice! Later when they were outside, Hank came to me and said, "Mom it is just so hot! I need to take my shirt off." And so he whipped his shirt off and I realized he was wanting to show off his incision. "Does this look like a shark bite to you?" Hank asked his friend. "What is that from?" Colin asked. "My operation," Hank replied. "Oh....cool!" was Colin's response. I handed Hank his shirt, he put it back on and off the boys went, to play more basketball. I breathed a sigh of relief and chuckled to myself at how sly Hank was.

We BBQ'd with friends the next day, and although their kids knew all about the surgery and had seen the photos on the blog, it just wasn't a big deal. They inquired about it when they got here. And they knew not to play rough...for which I was grateful! But after the initial questions, all was forgotten! I love the innocence of kids and how they don't really notice the differences of others....or maybe I should say...they don't care! If only as adults, we didn't lose that ability to just accept people for who they are and not for what they look like...

We've hit a post-surgery milestone. Hank has gotten the OK from his surgeon, to swim. Hallelujah! Summer can now resume! It has been an agonizing wait. As the temperature soared to 107' last week, I turned up the air conditioning and we gathered indoors, to wait it out. Without the relief of a swimming pool, it is just no fun!

I sent Dr. Siebert an email the other day, including the latest photos of Hank. I told him that Hank wanted to know when he can swim. Within a few short hours we had our answer. "Hank can go swimming..." the email read, "All looks fine....Don't worry....let him be himself..." Just a few sentences and we are all smiling.
That night, our friend, Sophia stopped by with dinner for us. We have great friends! Sophia organized a group of friends to bring us dinner 3x a week for the first couple of weeks after we got home. So grateful...how did she know that I wouldn't feel like doing anything? I told Sophia the exciting news about Hank getting clearance to swim. "Well then you better bring him over and come swimming at our house tomorrow," she said. Hank was so excited!
The next day, we headed over to Sophia's house. And instead of just our kids, she had called some friends and we ended up with 12 kids for Hank to splash around with! Although Hank is the oldest of that bunch, he still had a great time, and I was so happy to see him having fun. After swimming the kids all played together and I was able to have some "girl" time with my friends...something that I really needed! What a nice lazy summer day! (And once again, the kids didn't notice his face!)

Today, we finally made it to the new "sprayground"...a park that also has an area where there are fountains and water features for the kids to run in. Cathy and her kids met us and they all had a ball. Fresh air, sunshine, laughter and exercise. Just what Hank needs.

We've had another exciting occurrence since we've been home. The Hank Chronicles is getting noticed by the exact people who I hoped would find it! I have received an email from a woman named, Michelle, in Jerusalem who in June traveled all the way to the United States to have the same surgery performed by Dr. Siebert. She is following Hank's story and is excited about how good Hank looks. And then there is the email from the woman in Australia who is also following along with Hank's story. She, too has PRS, and is excited to know there is a way to intervene and stop the atrophy's progression.

Two days ago, I received an email from a mom who also has an eight-year old boy with PRS. Her son is having surgery with Dr. Siebert on August 6th. She wrote to tell me that the blog is helping her know what to expect when her son has his surgery. I have written her back and have included my phone number. I know it was helpful to me to have Kyle's mom, Patty as well as another mom on the east coast and one in Ireland, to turn to. I hope that this mom will turn to me, when she needs someone to talk to. Or if she has questions. When your child has a rare illness and it's one in 6 million...when you find another family with it, you need to hold on...there just isn't that many of us!

And if that wasn't enough, even Dr. Siebert has read The Hank Chronicles! And he approves! And maybe, just maybe...he can use it for

his patients too, as they prepare for surgery. I feel like great things are happening and strides are being made in the treatment and awareness of this illness and I am grateful to be on the front lines. Now if we can just get the name, "Parry Romberg" into the mainstream...then we can get the research going...!

I am thankful for Hank. And for him allowing me to tell his story and to share his journey with others. He knows that it will help someone else... And so we will take Dr. Siebert's advice and just "let Hank be himself"...this is his summer...his job is to just have fun and enjoy life. And with the first surgery behind us and the revision surgery 4 months away, now is the time to do just that!

Happy Homecoming!

2009-07-17T09:38:00.000-07:00

We are home! Two weeks post-op and happy to be back! Missing our friends in Connecticut and the beautiful countryside... but happy that our family is back together again! It has taken me three days to write this installment...Lucy is my constant companion and my body is still on eastern time, making me feel so tired when it only 8:00 pm here! So although this is dated Friday, it's really Saturday by the time I am finished!

Our last days in Connecticut were great! Hank had time to rest and play and build things with Sean's Lego's. Together the boys made some amazing things! I had some downtime with Larry and Patty and their wonderful neighbors, Mark and Sandy. It was nice to just do "normal" things!

The boys collected firewood so that we could make s'mores, and I was surprised to see Hank maneuver the wheel barrow all by himself. (I know...he should have been resting...)

That night, we had a nice dinner outside on the patio. As it got dark, I saw two shining eyes in the forest looking at me. I closed my eyes and looked again. Now there was just one light...wait, another one. They kept blinking out. "Is there someone in the forest over there?" I asked, hoping my voice wasn't trembling. Patty and Larry said simultaneously, "Fireflies" without even looking up. Fireflies? I had never seen fireflies in real life! "Hank, look at the fireflies!" I exclaimed. Hank and I were so excited to see them. As it got darker, Sean caught a couple for us to hold in our hands. They are cute little bugs who's bodies and tails light up in cool neon green color.

Sean taught Hank to make S'mores as we gathered around the fire pit. Hank just loves roasting marshmallows now, and made sure that he got his fill! Later that night he helped Sean take out the trash, and found himself face to rear end with a skunk! And it was Hank who was facing the skunks rear-end! But they raced away and saved themselves from a stinky attack!
Between S'mores, fireflies, skunks and Lego's, it was the perfect night!

I should mention something about Patty.... I have never met a Patty that I didn't like. So when Patty invited us to come visit, I knew that it would be good...she's a Patty after all! I have three sisters: Mary, Patty and Barbara. My sister Patty, has two sisters-in-law: Patty and Barbara....so my life is full of Patty's and Barbara's... Now, new Patty is telling me about her family. She has a twin! Can you guess her name...? Of course...it's Barbara! What are the odds of that? So now I know THREE Patty and Barbara duos! Another sign it was all meant to be...

Hank and Sean went fishing again and caught two fish...a rainbow trout and a brown trout. Sean showed Hank how to gut and clean the fish and Hank had a full biology lesson on the fish's organs and eggs! Without Larry there, I had to put the worms on the hook for Hank, which moved me up to "super-cool mom" status, but secretly grossed me out!

We came back and cooked up the fish. Hank took one look at the fish with their heads still on and passed on trying it. Stuck with the hot dog....

The boys played outside while I did some gardening. Larry had been dismayed by the dead carnations around the pool, so I dead-headed them for him...least I could do...the man had put up with us for 4 days! Hank and Sean had a huge water fight, laughing and yelling! So much for Hank resting. That kid has had more energy than ever! The next thing I knew Hank was in the pool. Just to his waist...he knows he can't swim until we get clearance from the doctor...but there he was just taking a break in the water.

Larry treated us to a trip to the ice cream parlor for our last night in Connecticut. Big hit of course, with Hank. (OK, me too!) We sat on the porch of the ice cream parlor and watched the cars go by, and watched dusk descend on their sleepy little town. It was so idyllic, so peaceful and so perfect!

The next morning we got ready to leave for the airport in NY. Kyle and I had a chance to talk...I asked him a lot of questions...how did he feel about the surgeries? What should Hank tell people who ask? Things like that. I asked him what he remembered at Hank's age? Kyle was so open with me and told me what he thought. He had a lot of ideas to help me assist Hank through this, but the biggest thing that stands out to me is when he told me, "I would not be who I am today, if I did not go through all this. It has shaped who I am." His words struck me... Kyle is a great kid, who will be a great man.

Kyle and Hank said their goodbyes and we promised to stay in touch. About 10 minutes later, Kyle was back. He ran upstairs and came down with something in his hand. "Here Hank, look...these are the firefighters gloves I wore when I put out that fire the other day. I want you to have them." OK, he could have warned us...Patty and I looked at each other with lumps in our throats and tears in our eyes. What a guy! What a great guy! Hank was thrilled and Patty and I were too overcome to say much.

We loaded up for the long trip home. We said goodbye to Sean and Mocha and stopped by to see Larry at work. Patty drove us all the way from her house to JFK and made sure we got checked in... even took an extra minute for goodbyes despite the police officer telling her to move her car!

After making it through security, which Hank is an old pro at...shoes off before he even gets there, we stopped in at the newsstand at the airport to stock up on water, a few snacks and reading material. I had my hands full and noticed a man in a pilot's uniform behind me. He was just buying a newspaper so I asked him if he would like to go ahead of me? He seemed a little taken aback...New York City, after all... and then said he would and thanked me. He thanked me again after making his purchase and told me to have a nice flight. I was thinking the same of him!!

We boarded the plane...Hank had the window seat and I was stuck in the middle. A well-dressed man in his late 20's sat down next to me. We said hello and he proceeded to get situated. The plane was hot. There was condensation on the windows. We taxied down to where the planes line-up for takeoff. And then nothing. It was hot, my seat mate brought a lot of food with him and proceeded to eat a huge sandwich while poking me in the ribs with his elbow. He finished that and then had soup. Again with the elbow. I was starting to get irritated...it was hot, and now stinky thanks to him. Finally the captain came on and apologized for the delay. "They have sent us to the farthest possible location," he said, "and I'm sorry it's so hot...it was over 100' when I boarded and we are trying to cool it down....oh and we had a maintenance light problem that we had to take care of." WHAT? I did not like the sound of any of it... I would have taken a deep breath, but could not since my diaphragm was seriously inhibited by the elbow jabbing it!

The guy next to me finally put his food away as the flight attendant told him to prepare for takeoff. The pilot came on and said we were good to go, and with that we raced down the runway.

It was a shaky ride...turbulence, a little shuddering from the plane, and I would swear we achieved weightlessness a couple of times. The pilot came on to welcome us aboard, "Welcome aboard, we are non-stop to Cabo San Lucas!! Ha...just kidding...San Francisco!" I liked him already!

It was a non-eventful and good flight...despite the guy next to me, who kicked off his shoes and pushed them under MY feet...and his smelly bag of food too... then he hogged the armrest, picked his ear, picked his nose...ate raw cauliflower, which is really an assault on the senses, worked on his laptop with his elbow once again in my gut...and was just generally annoying and inconsiderate. But I never said anything...he was nice. He was clueless. And we had such a good trip, I wanted it to end on a positive note.

Hank is a great traveling companion. He likes to fly and he keeps himself busy. He read books, looked out the window, played with his Nintendo DS and we played "Travel Battleship" (which I don't recommend for the confined space of an airplane...the small pieces get everywhere!) Hank was just happy to be heading for home, to see his brother and sister, Dad, friends and family.

We made great time and arrived in San Francisco a few minutes early. As we got near the door to leave, a group of flight attendants and the pilot were saying goodbye to passengers. As we said goodbye and thank you, I realized our pilot was the same pilot I had seen at JFK and asked if he'd like to go ahead of me! I told him that seeing as how he was our pilot, I was really glad he went ahead of me. He recognized me with a huge grin! He said that I should've brought Hank up to the cockpit before the flight for a tour. OK, who would even think to do this? Not me...

I told him that would have been great...that Hank was in NYC for surgery and it would've been the perfect ending, but maybe next time. Well , that was it! The flight attendants start moving the barriers to first class while saying, It's not too late...go now. Grab your camera, mom!" The pilot led Hank to the cockpit while I searched my bag for my camera. I stepped in to the cockpit to find Hank sitting in the pilot's seat, hands on the wheel and asking a ton of questions. That kid was in heaven! We took a few photos and the co-pilot handed Hank some wings. "you've got your wings now, " she said. Hank was beaming! The pilot, Mark, asked what Hank's surgery was for. I told him Hank had Parry Romberg Syndrome and a brief explanation. I told him he could check out Hank's web site and blog...especially since his photo would be on the blog shortly...oh and I asked if that was OK. He laughed and said he would check it out.

It's just crazy how things have worked out for us on our trip! We had a short layover in San Francisco and then hopped a little plane (complete with propellers!) to Sacramento and were there in less than 45 minutes. Jeff was there to greet us and we were so happy to see him. But I was disappointed that Charlie and Lucy were at my mom's house instead of the airport. I had geared myself up for seeing them and could not wait another minute!

Hank talked a mile a minute on the 30 minute drive home. He filled his Dad in on everything from fishing to the flight home. So animated, so excited and so happy. We arrived to "Welcome Home" signs at my mom's house. We snuck in the door, Hank walked in and announced, "Hi Lucy and Charlie! I'm home!" "HAAANK!!" they screamed as they ran to hug him. Yelling, hugging, jumping up and down...they were excited! I hugged my mom hello and then waited for the onslaught of hugs and kisses...nothing...they didn't even notice me. Jeff finally said, "Hey guys, mom is home too!" And then, I got my hugs and kisses...and then right back to Hank. They had missed their big brother and he had missed them! Hank finally noticed his grandma..."Hi Grandma," he said and gave her a hug.

Jeff decorated our house too, and when we pulled up there was a big "Welcome Home Mom and Hank" sign covering the door. Balloons, banners and streamers! We were home! The house looked so good, and was so clean. Jeff, the cleaning fairy, had been hard at work, and his mom had cleaned up the laundry room! Hurray! Oh, but she cleaned our bathroom...poor thing...she is so brave!

We took Wednesday as a family day and were hoping to sleep in. We woke to Hank standing over our bed, holding Kyle's gloves. "Look Dad! Kyle gave me his gloves. He used them to fight a fire!" He held up his prized possession, grinning from ear to ear, so proud. Hank spent the day playing swords with Charlie, in the sprinkler with both Charlie and Lucy, on the Wii, and at the movies with the whole family. It was the perfect homecoming!

Nine months of trying to figure out how to help Hank. A devastating diagnosis, doctor's appointments, fundraising, two trips to New York in three months, fear, prayers, stress, tears and more. New friendships forged, new life experiences...our children have gained some independence from all of this, and I have learned to rely on others. Hank has never asked, "why me?" and we must follow his lead. Our faith has brought us thus far and without a doubt I know that we are on this journey for a reason.

And so we enter the next phase...recovery. Helping Hank to recuperate both physically and mentally. I'm drained...and I feel a little lost. I imagine Hank must feel a little of that too. I will send photos to Dr. Siebert today and see what he thinks and we are still waiting for the results of the pathology of the infected tissue removed during surgery. In four or five months, we will head back to New York for Hank's revision surgery. More fundraising and preparation for that trip in the months to come. This journey isn't over, but we are hopeful that the hardest part is behind us...

Recuperating in the Country

2009-07-12T11:24:00.000-07:00

After 12 days in New York City, we are so happy to be in the wide open spaces of the Connecticut countryside. Friday, we slept in, went to Borders for a new book, grabbed a bite to eat and went back to prepare for departure. After packing up and cleaning the apartment, Hank and I eagerly awaited the arrival of the Richard Family.

Patty called to let me know they were there and Hank and I rushed to the lobby to greet them. Since Patty and I had only communicated through emails and phone calls, I had no idea what she looked like. We came out to find a pretty, petite and fit blonde woman and her model-cute 14 year old son, Sean. We let them into the lobby and exchanged hugs. "Larry is parked illegally at the curb," she said. We rushed in, talked for a moment and grabbed our bags. I am embarrassed to say that we did not pack light, and I feared for Larry's back as he hoisted our bags into the back of the SUV.

Larry navigated us through Manhattan traffic as we made our way down to Little Italy for dinner. We made it to one of their favorite Italian restaurants, La Mella's. It was a family style restaurant with photos of their famous patrons adorning the walls. This was the real deal...the true New York Italian experience. Larry and Patty's daughter, Amie also drove in from Long Island, along with their niece, to join us for dinner. We had a great time getting acquainted and I immediately felt at ease. Larry is so funny and his boisterous personality kept things lively. Throughout dinner, Larry would look at Hank and then tell me, "He looks so good, Terri. I can't believe it!" And then he would grin at Hank, "You look good, buddy!" The minute I would say that I thought he looked too swollen or was worried about his eye, the entire family would reassure me..."No, looks great!" Sean would say with a thumbs-up. "Oh Terri, he looks SO good," Patty would say with her slight New England accent. "He looks so much better than what I expected!" Larry was quick to say. I was so relieved to be with people who not only could give me an objective opinion, but actually knew what they were talking about... they had been in my place!

The street was full of vendors and Amie went across the street and came back with a Spongebob shirt for Hank....and the bond between them was formed. Hank said he needed to use the restroom and Larry told Sean to go with him. Hank came back chewing gum..."Where did you get the gum?" I asked Hank. "From a guy in the bathroom," he replied. "WHAT? What are you doing taking gum from a guy in the bathroom? You know better than that!" I exclaimed, not believing that he would do something so foolish. "No, it's the guy who works in the bathroom...you know, he hands you a towel to dry your hands and stuff," Sean said in Hank's defense, thus forming a bond with Hank. I breathed a sigh of relief and suggested he not take any more gum...

After dinner, we left Little Italy and headed for Connecticut. Getting out of Manhattan was more difficult than we expected...apparently Friday nights on Canal Street become a sidewalk market of sorts with vendors selling everything from designer knock-off purses to Hindu statues. It took us an hour to go one mile, but did give us a chance to take in all the sights and sounds.

We arrived at the Richard's home around 10:00 pm. We still hadn't met 19 year-old Kyle, who is the one who endured the same surgery as Hank, many years ago. Hank was looking forward to meeting him and Patty said Kyle had called and said, "Don't let Hank go to bed until I get there!" As we got out of the car, we were greeted by Mocha, their chocolate lab. Hank was so happy to see a dog! And Mocha was so happy to see her family!

Amie and Sean had followed us home in Amie's car. They hit the door with the largest and funniest balloon hat I have ever seen. "We got you a hat!" they both exclaimed to Hank. Sean helped Hank put it on, and Hank grinned from ear to ear! I was soon to learn that this was going to be a visit full of fun and surprises, and would be the best medicine possible for Hank's recuperation.

Kyle got home shortly after we arrived and he and Hank got to know one another. They were visibly excited to meet. Patty and I started snapping pictures of them, knowing that this was a momentous occasion. I did not realize it, but Hank is the first person Kyle has ever met who suffers with the same illness! And here, Hank has had the good fortune to meet two young men with PRS! Amazing!

Kyle is a friendly young man with a sarcastic sense of humor. His blonde curly hair sets off his green eyes and his build tells you this is an active kid. I don't know what I expected...I had seen photos of Kyle before and after surgeries... I think I thought I would find a timid, quiet and frail teenager...and to see this funny, vibrant and busy guy who has a gentle manner and is living a full life, gave me the much-need boost of hope for Hank to have a normal life!

Kyle was diagnosed at a young age, and his parents were given no options. But then they met Dr. Siebert, and their lives changed as they had met the one man who could offer them some hope. Kyle had the free-flap surgery that Hank had, when he was just 5 years old. Kyle's deterioration was severe and his facial bones were affected. Larry and Patty tell me that Kyle has endured seven surgeries through the years. Because the disease involved bone, Kyle's face would change as he grew, and then another revision would need to be done. His last major surgery was a year and a half ago, when he flew out to L.A. for facial reconstruction. It was a long and painful recovery, but you would never know that looking at him now. Kyle's face is near perfect. A little issue with the eye that will be addressed next time, but for the amount of involvement he had...it's amazing he has a face at all!

I explained Hank's surgery to Larry, Patty and Kyle. I told them how this was an intervention, rather than the reconstruction that Kyle has been through. As they listened, they were amazed at what Dr. Siebert is able to do. "You have saved this kid the numerous surgeries that Kyle went through," said Larry. And that was EXACTLY what I needed to hear!

Larry and Patty and their kids are amazing. The challenges that they have faced with this disease and having no where to turn... they are the trailblazers. They've done the work for the rest of us, they have sacrificed and endured while putting Kyle and their family first. I was unsure about coming here...not knowing them...being 3,000 miles from home with a recovering Hank...but I had faith that this was meant to be. And I know, without a doubt that this is where both Hank and I need to be.

Saturday, we woke to the sounds of birds chirping and ducks quacking. We had not seen the backyard yet and were amazed at what greeted us. There is a beautiful patio with swimming pool and gorgeous landscaping. Beyond the pool is the tennis courts that Larry and Kyle installed. And then there is the pond, complete with turtles, fish and ducks! No skyscrapers, no neighbors on top of you...just the wide open sky, the trees blowing in the breeze and the scent of flowers in the air.

Hank is having the time of his life and I couldn't be happier! Kyle is a volunteer fire fighter and the department had a controlled burn. We got got to see the firemen in action as the used the big hoses to put out the fire. Hank thought it was terrific!

The Richard's have a fire pit in the backyard. They fill it with firewood and set it ablaze. They asked Hank, "Do you want to roast marshmallows?" "Yeah! I've never done that, "he said. There was a collective, "WHAT? You've never roasted marshmallows?" They turned to look at me with complete disbelief that I would let Hank get to the ripe old age of eight, without roasting marshmallows. I defended myself by explaining that fire pits and little kids don't mix... but I think they secretly harbor the belief that I am doing this child a disservice by not letting him experience the thrill of putting food on the end of a stick and sticking it in a fire.

And so Hank finally got to roast marshmallows with Sean. They had a great time. Larry went and found the perfect stick for Hank and whittled the end so the marshmallow wouldn't fall off. Hank was in heaven! The smile on his face and the marshmallows in his hair said it all!

Little creatures live around the pond. Sean has schooled Hank in the fine art of "frogging". I looked out the window and watched the two boys stalking poor innocent frogs at the water's edge. As they would get closer the frogs would leap away and the sight of the boys splashing after them cracked me up. I heard yells and looked up to see Sean holding a prized frog. After they released the first one, Hank caught one. He ran up to the patio to show us. He held it tightly in his hand, with the legs hanging down. It was so cute...bright green with little black spots. Hank proudly displayed his catch and then ran back down to the pond to release it. I won't go in to how I kissed a frog to save it from being thrown, rather than placed, in the water...but suffice to say I have gained big brownie points with the under-15 gang.

Sean has ducks...Carlos and George. A large white Long Island Duck and a little Mallard Duck. They are best friends and cruise around the pond or waddle along the shore together. Sean introduced Hank to Carlos and Hank sat and petted, and yes...hugged the duck. Hank loves animals and can't believe his good fortune, to be surrounded by so many.

Today, we went to church and then Kyle took Hank on a tour of the firestation. The tour was cut short when the station got a call, but Hank was able to see the guys suit up and head out, lights blazing and sirens wailing. (They did that for Hank's benefit...)

This afternoon, Hank and Sean went hunting for bait worms. They had a great time digging them up in preparation of their fishing excursion. While I stayed behind, Patty, Larry, Kyle, Sean and Mocha the dog took Hank across the way to their favorite fishing spot. Awhile later Kyle came back to report that Hank had caught a fish! And not only that, he was the only one to catch one! And then Patty came back to tell me that Hank wanted to show me the fish. He waved to me as I came down the hill. With excitement in his voice and a bright smile on his face he called to me, "Mom! I caught a fish! Come see!" He waded into the water and grabbed the line pulling up a beautiful rainbow trout! He held it up for me to see and then with Larry's help, released it back into the stream. Such a proud moment and one he will never forget!

Right now Hank is helping Sean collect kindling for the fire pit. Larry has promised him "S'mores" tonight and Hank is bound and determined to have them. He is having a great time. This is just what he needed... a chance to be a kid. Hopefully, this will be what he remembers when he thinks of this trip. I know he won't forget the surgery, or the pain of recovery. But hopefully these experiences are helping to lessen the pain. Being here reminds me of simpler times...playing in the sunshine...running around barefoot, catching frogs and fish....helping to collect firewood...roasting marshmallows...playing with ducks and dogs...

This is what he needed for recovery...or maybe I should say we...

Surprises, Magic and Miracles!

2009-07-09T18:56:00.000-07:00

Twelve days in New York City and Hank and I are homesick and tired! Long time to be away from home and the rest of the family! Jeff left for California at 3 am this morning. He was on stand-by for a 6 am flight and am pleased to say he was able to get on, instead of spending his day at the airport, as feared. Lucy and Charlie are so happy to have him home and probably are feeling a bit more secure...he was gone for a whole week!

It's been an amazing two days, full of surprises, magic and miracles! Yesterday, we all slept in and got a late start on the day. (it felt so good...) Not wanting to over-tire Hank, we took our time and stayed in until the afternoon. We finally ventured out and headed to Times Square in hopes of getting some half-priced tickets for a Broadway show. Every day at 3:00, the ticket booth opens and tickets for that evening's show go on sale for half price. Not every show is available, but there is usually a good selection.

As we stood in line, a homeless and somewhat drunk older man, holding a cup for change, approached us. As he got closer, he spotted the yellow "popcorn" sutures on Hank's face. He started backing up and yelling, "OH, OH, OH!!!" I thought he was just teasing Hank, but turns out he was truly freaked out. Just Great!!... "He just had surgery!" I told him. The man stopped....straightened up...and started apologizing profusely. He apologized to Hank and then grabbed Jeff's arm..."I'm sorry man! God bless!" he then apologized again and once again grabbed Jeff's arm. I could feel Jeff's body tense as he said, "Alright...move along."

Poor Hank..just as he gets the confidence to venture out... At this point, I offered to stand in line, and Jeff took Hank over to the fancy McDonald's across the street, with the best view of Times Square.

After an hour in line, I walked away with three tickets to the evening's showing of "Mary Poppins"! Hang gave me a thumbs up, "Good job Mom!" And we headed to the huge M&M store excited about the evenings events.

After a little chocolate shopping, we grabbed a cab and headed back to the apartment. Jeff and Hank went inside and I headed for the local drugstore to stock up on water. As I started towards the store, I reached in my purse for my cell phone to call my mom. Hmm...couldn't feel it...rooted around a little more...no phone! OMG! No phone!! I ran back to the apartment and dumped the contents of my purse. "Call my cell phone," I begged Jeff. Jeff dialed the phone as I waited to hear it vibrate in my purse. "Hello?" I heard Jeff say. "Are you in a cab?" He talked with the holder of my phone for a minute, and then Jeff directed the the person to give the phone to the cabbie. ""No, please ask them to hang onto it...I will come to them!" Jeff got the information and hung up. He said it was a woman named Meaghan and gave me her address. I could tell we were lucky she found my phone, since Jeff was cracking up during the whole conversation.

He told me she answered the phone by saying, "Is this Jeff?" (my phone is programmed with the callers' names) She told him, "I sat down in the cab and my butt was vibrating!" Hence Jeff's comment of "You are our people!" I took down her address, grabbed the bottle of wine we got from Dr. Siebert, and headed out the door.

I caught a cab and gave him the address on the Upper West Side. Fifteen minutes and $12 later, I arrived at the apartment building. I saw a pretty young woman with long curly strawberry-blonde hair in the lobby getting ready to go into the building. She said Hello. "Are you Meaghan?" I asked. She said she was and smiled at me. "You have my phone," I said. "Oh, perfect timing," she said and pulled out my phone. "Your children are adorable." she said pointing to the screen saver on my phone. "Thanks," I said and handed her the bottle of wine, "here's a little something to thank you for holding onto my phone." Meaghan asked why we were at NYU Medical? I explained about Hank's illness and surgery. "This is amazing," she said, "I advocate children's causes!" She explained that her friend was starting a business to help non-profits and right now was working with Children vs. Cancer.

We both instantly felt that a power much greater than ours, brought us together! Amazing! I gave her our website address, blog address and name and number. We promised to connect on Facebook (which we already have) and to join each other's causes. We said our goodbyes with not one, but two hugs, knowing that this was meant to be!

What are the odds that I would leave my phone in the cab, that THIS woman got into? And the fact that I realized it, while she was still in the cab? Then there is the fact that I had a bottle of wine (from California, no less) that was given to us by the doctor? Jeff had offered to go after the phone, but I felt that it was something that I should do... In fact, I felt compelled to go... gives me goose bumps... (miracle?)

I got back to the apartment to find Jeff and Hank involved in a killer game of Monopoly. They had worked out a deal where Jeff could only buy railroads, utilities and a select few properties. Hank also took over the job of banker, which is always Jeff's role...I was amazed to see Hank with a hotel on Boardwalk... Jeff landed on it and it was all over! There's no stopping that kid now...

We changed our clothes and headed to the theater to see "Mary Poppins". It was our first Broadway play and we were so excited to share the experience together! The theater is a small venue, but beautiful with intricate carvings, exquisite lighting and ornate fixtures everywhere you look. We were seated 18th row center...great seats for last minute! From the moment the curtain went up, we were mesmerized. Hank sat on the edge of his seat, peeking between the heads of the people in front of him. The costumes, the music, the dancing...incredible! Hank had a huge smile on his face... well, as big as a smile a kid with stitches above his lip can have... My heart swelled and the lump in my throat appeared, as I realized that at that moment, Hank had forgotten all about his illness, his surgery, his pain and everything else. He was a kid, transported to another place and time. It was truly magical!

We went and ate a late-night dinner, chatting happily about all our favorite parts of the show. We looked through our playbills, figured out which actors had which parts and just had a great time. We got back late....and Hank didn't get to sleep until 1:00 am! Neither did Jeff, which was terrible since he was getting up at 3:00!!

I got up with Jeff to say goodbye. We walked out to the lobby of the building and embraced. We said our " I love yous" and goodbye and I watched him walk across the street to catch a cab in front of the hospital. He raised his arm and a cab immediately pulled over. (3:30 in the morning and a cab is right there!) I waved as the cab pulled away and Jeff waved back. And I was swept with a wave of loneliness. Jeff had left...and I was alone in New York City with an eight year old, recovering from surgery. "Why am I crying?" I thought. "This is ridiculous...we had always planned this!" And even though my brain told me to get over it, I couldn't fight the feeling that it was now all up to me...and me alone...and we are talking really alone...

Thursday morning meant up early for the appointment with the surgeon to get the stitches out! Finally...the hateful yellow popcorn stitches were going to be gone! We arrived at Dr. Siebert's office and saw him as we stood at the counter. He flashed a big grin and a quick wave and disappeared into the exam room. We were shown into another exam room to wait. After a very short time, Dr. Siebert came in all smiles and high-fived me and then Hank. Grinning from ear-to-ear, he asked Hank, "How ya doin' big fella?" (OK, can I just say that I LOVE Dr. Siebert? He is awesome!) He and Hank talked for a minute and then he got down to the business of removing the stitches. A few hurt coming out and Hank tried unsuccessfully to keep the tears away. But only a few squeezed out between tightly-shut eyelids. He was so brave.

When they were removed Hank asked for a mirror. He was so happy to have the stitches out. Hank's face is still swollen and his eye is drooping, so he doesn't look like himself, but Hank seemed not to notice, as he was only looking at the places where the popcorn stitches had been. Dr. Siebert told me to send photos of Hank in a couple of weeks and then every 6 weeks after that. He said he would like to do the revision around Thanksgiving or Christmas (ACK!) and that he was SO pleased with the results. I asked if he felt like he got everything and he said yes. He said that he didn't think the atrophy would be back and after the revision, he would be "perfect". (Dare I jump for joy yet?)

Dr. Siebert told Hank that he could swim in a couple of weeks and resume life as normal. He asked when we were leaving New York and I reminded him that we would be staying with a family who has been through the surgery. "Oh that's right!" he said, "Take a photo of the boys together for me." He said he was happy that we were getting together and that Hank would be able to get some support from this boy who had already been through this. Big hugs and a promise to be in contact, we said good-bye for now.

I stopped in and talked to Nilsa, Dr. Siebert's assistant...I guess that's what you call her...she does it all...if you want to talk to Dr. Siebert, you call Nilsa! (Maybe she's the boss...!) I asked about the pathology reports on Hank's tissue samples and she told me she would follow up and let me know. I didn't know this, but Nilsa has been working with Dr. Siebert for eighteen years! See? I'm right...he is a great guy who surrounds himself with great people! I want to come back to NY, just to see them!

Hank and I were hungry when we left and started walking down Park Avenue in search of a Starbuck's. We walked quite a few blocks when it dawned on me, that there wouldn't be a Starbuck's on Park Avenue! Park Avenue is more commercial...doctors and dentists, lawyers and such. And the cross streets are all the expensive boutiques.... so we went over to Madison Avenue and found one in a Mall at 55th Street. The mall was a big open indoor seating area with different coffee houses surrounding it. While Hank ate his second donut and I finished my coffee, my cell phone rang. The voice on the other end was a woman that I had met through the "Romberg Connection" web site. Her son had surgery with Dr. Siebert in December with a revision in April. We had talked on the phone once before and exchanged numerous emails.

She said she was in New York and in Dr. Siebert's office! What? She said she asked Dr. Siebert how Hank was and he said, "They were just here an hour ago!" and told her to get my cell phone number from his receptionist. I told her where we were and she said they'd be right over. OK, what are the odds of this. A disease of one in 6 million...two kids who have had the same operation being in town on the same day within an hour of each other? Miracle!

Just a few minutes later, they arrived. Huge smiles on Mom, Dad and son. I felt like we were old friends instead of people who had never met. Hugs all the way around and we pulled chairs up to the table and started talking. The table buzzed with excitement! Here, Hank was having a chance to see another boy who had just been through the same surgery. And here this boy was meeting Hank and they could see they were not alone! I'm still smiling at the memory. We quickly shared our experiences as they had a train to catch. I was amazed at their son...age 13 chronologically, but really felt much older. So friendly, so nice and so intelligent. I took a photo of the boys together. Dr. Siebert will just love it! And so will Hank!! This is the first family I have met in person, who is walking on the same path that we are... And there is something about being in the presence of people who totally, completely, and whole heartedly get it. It is a bond that we share...and I feel that although we only shared less than an hour together...that we have made new friends! Divine presence...miracle.

I am elated! Hank is not only meeting one person that has been through the surgery, but two! One who just had surgery and one who is fifteen years post surgery! Wow!

Surprise!

Tomorrow, we take our leave of NYC, and we are more than ready! We are heading to Conneticut to spend time with this wonderful mom and her family that I know only through emails and phone conversations. And yet I feel like I have always known her. She, through her encouragement and experience, helped to convince me that this surgery was the right thing to do. And while I've been in New York, I have talked, emailed or texted with her every day. And tonight as I was freaking out about how swollen Hank's face is... she told me it's OK and to be expected. (as did my mom-friend in Ireland!)

I'm wrung out...I'm homesick...I'm exhausted...and yet I am excited...amazed and elated. Thankful and grateful are words I use every day. The blessings bestowed upon us are incredible. The friends back home who are going to be bringing over cooked meals for our family while Hank recovers and while I am gone. The moms from school who are calling themselves the "cleaning fairies" and want to come clean our house so I don't have to worry about the house when I get home and can focus on the kids... (although I will die of embarrassment if they see how gross my bathroom is...) The people who are touched by Hank's story and want to help... Our families who are helping to care for our little ones...

Surprises. Magic. Miracles.

Venturing Out

2009-07-07T21:46:00.000-07:00

Hope dawned bright and early today as we had our first post-surgical appointment at the surgeon's office. The appointment was with Dr. Siebert's nurse, Lisa, and our expectations were high, since we were told the drain in Hank's back would be coming out and maybe some sutures as well. Hank dressed in one of the many button-down shirts we were given from Hank's cousins (and his cousin's cousins!) specifically for this trip. He chose a bright yellow Hawaiian number, threw on a pair of jeans and off we went. We caught a cab up to Park Avenue for our appointment.

Once in the office, we were shown into the examination room to wait for nurse Lisa. A few minutes later, an energetic woman with a nice smile and easy personality, came in. She introduced herself as Lisa and quickly examined Hank. Instantly putting us at ease with her great sense of humor and contagious laugh, she asked Hank if he would like her to take the "popcorn" sutures off. "Oh please...more than anything!" She looked at his file and saw that he had surgery just five days ago, and said "Let me call Dr. Siebert first." After talking to Dr. Siebert she told us that we would have to wait until Thursday, when Dr. Seibert could do it himself. We were all disappointed, but don't want to rush it either. (OK, Hank wants to rush it...)

Lisa put lidocaine or some other numbing cream on Hank's upper eyelid, so she could remove the stitches without causing pain for Hank. While waiting for it to take effect, she went ahead and examined the incision and drain on his back. She told Hank that she could take the drain out for him. "Will it hurt?" he asked. "No, you'll just feel it tugging," Lisa replied. She cut the stitches holding the tube in place and gently pulled out the tube. Just like that, the hated "pipe" was removed! Jeff and I breathed a sigh of relief. Lisa was funny and I could see that Hank took an instant liking to her. He joked around with her and I was surprised that he was talking to her like she were one of his pals. Where did the boy who is usually very reserved in doctor's offices go? Has this experience changed him? I wonder...
She then deftly removed the stitches in the upper eyelid of Hank's left eye. Quick and easy...that's how I describe it. She was done before Hank even had time to complain. And then Lisa took the time to trim the popcorn sutures that were bothering him, and clip the suture ends that were poking him in the neck. She cleaned up the stitches and even cleaned out the blood that was still in his ear. I couldn't believe how much better he looked!

We confirmed our Thursday morning appointment with Dr. Siebert...to get the rest of Hank's stitches out!! As we headed out the door, Hank said, "OK, let's head back to the apartment!" Jeff and I started walking down Park Avenue. "Alright, but let's just get a little fresh air first," I replied. Hank has been either in the hospital or in the apartment since last Thursday! That's five days with barely any fresh air. So we continued walking, taking a left on 66th Street and heading toward Central Park. Knowing that Hank is self-conscious with how he looks right now, especially with the bright yellow sutures on his face, I held my breath and hoped he wouldn't demand to go "home" to the apartment.

We walked a few blocks, and as we crossed the street, he looked around and said, "Hey, we're at Central Park! Hey Dad! Want to see the zoo?" Jeff said he would and any worries about his looks forgotten, Hank happily led the way. We had a great time at the zoo, even though we were there a week ago. This was a different experience with Hank leading the way. "I own this place," he told us, striding towards the penguin exhibit. Hank joyfully took us from animal to animal. "Look at this, Dad!" he would exclaim, pointing to his favorite, the "Kea" bird. "Check out the penguins" he directed, taking us into the observation room. My heart soared, seeing the confidence pouring back into him.

We took a break, grabbed some ice cream and sat down under a covered walkway, as the rain started to fall. A group sat next to us with two young boys around Hank's age. I saw the older one shyly stealing glances at Hank's face. I felt the protective prickle of a mama bear on the back of my neck. And then I instantly relaxed. These sweet little boys were curious, but they weren't obvious. I don't know if Hank noticed, so I said to the one boy, "It's OK, you can ask him about his face." The boys' mother looked over and smiled at us, "Did you have surgery, honey," she asked. Hank told her he did. "Why? What happened?" Hank looked at her and said, "I have PRS and I had surgery to fix it." She looked at me inquiringly and I gave her the quick rundown. And that was that. We then talked about the rain, that they are from New Jersey and rarely come to the city, we're from California...normal things. Hank's face was not even an issue.

As the rain cleared, we finished up at the zoo, seeing a red panda, sea lions, polar bears, rainforest birds and (shudder) reptiles and bats. Hank loved it and was the perfect little tour guide.

We stopped and looked at the map of Central Park and saw there is a "Chess and Checkers" house. After playing checkers and chess with Jeff yesterday, Hank is now obsessed with checkers. And so, we of course started in the direction of the Chess and Checkers house. While walking along, Hank spotted a balloon vendor. He admired the way she twisted the balloons into different shapes. The woman looked at Hank..."You look like you've had a tough time, sweetheart. I think you need a sword." She quickly made him a sword. "Oh, and you need a belt to carry your sword. It'll keep your hands free for ice cream." And she tied and orange balloon belt around his waist. I put a dollar into the bucket, thanking the woman and Hank skipped after Jeff to show him his new weapon.

We saw beautiful scenery as we walked along. We found the memorial to "Balto" the sled dog and Hank climbed on top for a photo. (which HE asked for...) We found the "Mall" which has a beautiful tree covered walkway and statues of poets and authors.

OK, I'll admit it...we were lost. But luckily we found another map and made our way to the "Dairy Visitor Center" and the "Chess and Checkers" house beyond. We made our way up the steps and found ourselves outside a pavilion of sorts. There was a building with a trellis-covered patio surrounding it. All along the edges of the patio were stone tables, with benches and checker boards inlaid in the stone tables.

We went inside and inquired about borrowing some checkers. They took our name, looked at our ID's and we "checked"out some checkers. Hank and Jeff played the first game, which Jeff ended up winning. It was starting to get cool and tiny sprinkles were making their way to earth. I thought we were done, but Hank had other ideas.

Perceiving me as a push-over, he said, "I want to play mom." OK, I was getting really hungry and just wanted to go eat, but Hank seemed almost cocky in his attitude, thinking he would dominate me in a game of checkers.... And so I relented...and we played a nice game of checkers...or was it? Regardless, I won. Hank was incensed. How could this be? MOM beat me? And so he demanded a rematch. But it was raining, and we were hungry...but he insisted...and I folded... And then I swept the floor with him! "Mom! You are supposed to take it easy on me!" he told me. "Why?" I asked. "This is how you learn and now you have a goal...to beat me!" That appeased him, but he did let me know that I would have to play again back at the apartment. And I will say...he is not an easy opponent! I was shocked at how good he is...and so I know it won't be too long before he is beating the socks off me! Hope he gives me a few years to feel superior though...

We continued our walk through Central Park, in search of "Sheep Meadow Cafe". We walked by the huge fields called, "Sheep Meadow" because up until 1934, sheep grazed there. But as usual we got lost, and found ourselves at a really nice restaurant. We walked around to the front...."Tavern on the Green." Whoops! A little too fancy for us at the moment. Hank said he was tired, so we let him hail us a cab and headed back down to the apartment to get something to eat and just relax.

There were flowers, balloons and stuffed animals waiting for him. Deliveries from home. Hank was thrilled. His face lit up as he looked at the cards... Grandma and his aunts, uncles and cousins. What a special treat! We tied the balloons to his bed, and he is able to admire them even when he lays down.

I am grateful for today. Although Jeff's allergies are bothering him, he seemed to be better. I am

grateful that today Hank wanted to be outside. That he either didn't notice people looking at him or he just doesn't care what people think.

I have always thought Hank was cute. But now I see him in a new light. I am amazed by how courageous and fearless he is. As I watched him endure the glances and the whispers as he walked by, I saw Hank not as the cute mild-mannered little child I always thought him to be, but rather the beautiful boy with the heart of a lion, that he has become.

Feeling Better

2009-07-06T16:07:00.000-07:00

Day 4 post-surgery. Hank is in much better spirits! Being away from the hospital and with just mom and Dad has helped him so much. He hasn't cried at all and doesn't seem to be mad at me. But I know he misses his brother and sister and is eager to go home. He still has the drain in his back and that causes a lot of discomfort, but he hasn't complained about it at all today. The "popcorn" stitches on his face are another story... We managed to get him outside today. He and Jeff went out on the patio behind the apartment and played checkers and chess for over an hour, while I ran to the drugstore to get some supplies and some comic books for Hank. So glad he got some sunshine and fresh air!

Tomorrow, we go to the doctor's office for the removal of the the drain in Hank's back. Hurray! Another little milestone. I think Hank will feel better without that appendage. And then Thursday morning, he will see his surgeon and get the sutures out. That will be a huge relief! I am hoping that will give Hank the confidence to go out in public again.

Hank has been questioning the reason for his surgery. "Did you just not like my face before?" Ugh...sound of my heart breaking...I explained to him that it had nothing to do with his looks...but that Parry Romberg's was attacking his face and this was the way to stop it. Later he asked, "I wonder if my friends will recognize me when I go back to school?" Craaack...yep heart has definitely broken! What a little sweetheart. It just kills me. With his inability to raise his arm, he keeps it close to his body. And he has to wear button down shirts, because we can't pull anything over his head... And then the sutures on his face prevent him from having much expression...so he looks like a little old man as he slowly moves around. So sad...

I called the hospital photographer, Mary, today. I asked her to email me Hank's pre-op photos, taken when we were here in March. She did and I pulled them up on the computer. I called Hank over to the computer and showed him the photos. "See how thin your face is on this side? I asked. He said he did. "And see how your eye was drooping a little and your upper lip was so thin?" Again he said yes. "This is what the Parry Romberg's was doing to the left side of your face. The surgery was to get rid of it and build your face up to what it was before." I explained. "Oh...," he said. I told him that after he healed, the left side of his face would now look like more the right and he would look like he did before. He quietly looked at the photos. "Do you understand now, Hank?" "Yes... I do.", he replied. I'm not sure if he really does...but that's the best I can do for now.

Someone suggested that I show Hank photos of people who have really bad cases of PRS. But I don't think he's ready for that. He doesn't need to know just how bad this disease can get. He's only eight, and I don't need him worrying about that. If all has gone the way we hope, Hank will no longer have facial atrophy and someday we can say, "Hank had a condition when he was younger." And that will be it. Our friends in Connecticut now say that about their son...I think it's so exciting for them to be able to say that!

Jeff has been struggling with some sort of allergy around his eyes since he arrived in New York. He is having symptoms consistent with being around cats... severe cat allergy. So now we are wondering...did he sit next to a cat lover on the plane? Did the couch in the apartment come from someone who had cats? Who knows...all I know is that Jeff is miserable and suffering! Poor guy.

Today he decided that enough is enough and he needs medical care. I called Hank's surgeon, Dr. Siebert to get a referral. Of course he only knows one general practitioner and he happens to be the head of medicine at another hospital. Jeff called and as predicted, they didn't give him the time of day. But they did give him the number of an ophthalmologist...who declined to see Jeff because they don't take our insurance...so I placed calls to the nurse practitioners that we saw at the hospital when Hank did his pre-op...and wouldn't you know it, they aren't in today...! What now?

So Jeff did the only thing left when you are staying right across the street from NYU Medical Center...he went to the emergency room! UGH! And I thought being in the hospital in New York would be bad... I texted Jeff after he had been there for about 45 minutes and asked how it was going. He said "this place is crazy!" I asked if he felt like he was on an episode of "ER". His response cracked me up..."Yeah, the people don't look as good as they do on TV." I think that pretty much sums up the experience. So after an hour and a half, he came back, hospital wristband in place, armed with a couple of prescriptions and told to take Benadryl. The doctors don't know what is causing his reaction, but suspect he has come into contact with cats or some other allergen. Hope it clears up soon...it's no fun. (and now I have TWO patients!)

We are managing to keep busy in the apartment. Hank has discovered the game of Monopoly and loves it! Even though Jeff has become Donald Trump-like, and has no problem bankrupting his young son and wife! Who knew he had it in him? I think I'll just stick to Clue!

Jeff will be leaving to return home this week. Not sure which day. Depends on his work demands. I secretly wish he would stay until Friday, but know that's not possible. Jeff's mom is with the kids and wants to leave by 9am Friday morning. And in order for Jeff to get home flying stand-by, he'll have to be at the airport at the crack of dawn on Thursday, which means he'll miss the doctor's appointment. But I'm happy to have him as long as I can. Without Jeff here, Hank will have to venture out for food, like it or not... so I hope Jeff leaves Thursday, rather than Wednesday...but we'll see how it goes at the doctor's tomorrow.

Lucy and Charlie are doing fine at home with Jeff's mom. Unfortunately, she has a bad cold, which makes taking care of them more of a challenge. But they are back in Montessori school this week, so she gets a break and they enjoy the consistency of their school schedule as well as the love of their teachers and friends.
We call every night to talk with the kids. They really miss Hank and always ask to speak with him. They think we are out having a great time, with no concept of what Hank has been through. But they are hanging in there and are eager to see us, as we are them. Hank and I have already been here for over a week, with one week to go... Hard on all of us

But even so, I am thankful for everything that has happened. The early diagnosis, finding Dr. Siebert, the fundraising efforts, family members to take care of the little ones, the support of family and friends, a place to stay in NY, successful surgery...everything!

So, we look forward to what tomorrow brings, grateful for the change in Hank's attitude, his body healing properly and the hope that soon this will all be a distant memory!

The Emotional Aftermath

2009-07-04T14:42:00.000-07:00

Hank is unhappy. Hank is crying. Hank just wants to go home! Everything hurts, itches or just plain "bugs". He has one drainage tube coming out of his back and one out of his head. They are in the way. They are uncomfortable. Let's face it...they are weird!

Yesterday afternoon, they moved Hank from ICU to a regular room in the pediatric ward. It was a nice little milestone, meaning Hank's recovery was going well. But it also meant moving from the quiet, somewhat spacious and one-to-one nurse/patient ratio...to a tiny closet-sized room, with a roommate and the five-to-one patient/nurse ratio.

Poor Hank, so brave and so stoic through all the pre-op stuff, day of surgery and even post surgery, has found himself in this strange environment, with other sick kids, nurses and doctors taking his vital signs at all hours of the day and night and a needle in his hand, attached to an IV, prohibiting him the freedom to move around. The incision on his back really hurts and he can't use his right arm at all. Add to that the drains and "popcorn" stitches on his face, and you have the makings of a kid nightmare!

Hank woke up from a nap, with tears streaming down his face, "I want to go home, mom". My heart aches... "Me too," I tell him. "I want to go home now!" Hank cries. "I know, me too, but we have to wait until you are better," I reassure. I don't think anyone is prepared for the after effects of surgery. Particularly a child. But I have to admit, even though I researched the surgery, talked with the surgeon in great detail and talked to parents who's children had been through it, I was ill-equipped for how Hank would feel emotionally. Hank is upset, in pain and blames me. I leaned in to kiss him and he hit me in the face and pushed me away. And all my strength and resolve crumbled away and I sat and cried along with my child. "What have I done? Look at him! So miserable and in pain! This is my fault!" Finally Hank said to me through his tears, "Why are you crying mom?" "I'm crying because you are crying and I feel so bad," I told him. "Stop crying!" He said, his voice laced with irritation, "You are making ME cry!" And so I pulled myself together and stopped wallowing in misery. (at least while Hank could see me...)

Hank stopped his crying for the time being, but off and on during the next 24 hours, Hank would express his misery and plea for the "pipes" to be removed from his head and back.

Hank has continued to do well in his physical recovery, and has even had some visitors besides doctors and nurses. The first visitor was Reverend Stephen from the Episcopal church. He stopped by when Hank had first come out of ICU and said hello and prayed for Hank. The next day he came by to check on us. He was so nice and we found out he is a native New Yorker. He gave us some ideas of where we could take Hank after he felt better. And he said he would pray for Hank as well.

The second visitor was Rabbi David. He told us that his paper had us listed as "religion unknown" and asked us our denomination. "We are Catholic," we told him. "Would you like a priest?" Rabbi asked. We told him we would, but that we will take prayers from anyone willing to give them. And so Rabbi David met Hank and said the nicest prayer for Hank and for his recovery. We are grateful that these good men took the time to meet Hank and pray for him!

Jeff moved us from the Marriott to the apartment across the street from the hospital. He was able to get settled in, shower and join Hank and I at the hospital right after dinner. While Jeff visited with Hank, I ran down to the cafeteria and grabbed a bite to eat. I gave my mom a call and cried on her shoulder about Hank's unhappiness and the helplessness I was feeling. Sometimes just hearing my mom's voice is all I need to feel better! And so with her empathy, I once again pulled myself together so that I could get through the night with Hank.

My sister, Patty, heard from mom that Hank was unhappy and so was I. She sent me some text messages to encourage me not to take anything personal, that it was the medication talking and that we would get through this. Her words helped me see that Hank is not himself right now and as a kid, probably feels like he will be like this forever!

I spent Friday night at the hospital with Hank. (Jeff spent Thursday night there) It was a long night, with the nurses and techs coming in and checking Hank's vital signs. I still have my cough and would try to suppress my coughing fits, so as not to wake the little boy and his mother in the next bed. But as you know...suppressing a cough only makes a coughing fit worse. So for me, much of the night was spent sucking on a cough drop and trying to will my body to cough no more!

Saturday came bright and early as the nurses all show up at 6:30am to administer medications and check vitals. Once again, Hank was upset and cried about wanting to go home. The nurse told us that she thought that might be a possibility and that the doctor would be by soon.

Hank's breakfast came and he didn't want anything they offered. Luckily, on Saturdays donuts, bagels and coffee are donated from "Dunkin' Donuts". So Hank had a very nutritious breakfast of two donuts. But at this point, I just want the kid to eat and will pretty much do whatever it takes to make him happy, if only for a moment!

The doctor came by to check on Hank. He checked his face to make sure it had a pulse, had good color and was soft. He looked at the drains, incisions, sutures and them made the most important statement of all..."I think Hank is ready to go." He said that Dr. Siebert had mentioned that Hank would probably be ready to go to the apartment by Saturday and he would go call him to confer. But in his mind, Hank looked ready and based on his emotional state, he would recover faster away from the hospital.

Wow! Great news! Hank was so happy! After a brief time, the doctor came back and said, "Yes, Dr. Siebert agrees. You can go to the apartment and then Dr. Siebert will see you on Tuesday." The doctor removed the drain and "pipe" in Hank's head but said the drain in his back would need to stay until Tuesday. Hank begged the doctor to remove the stitches, but was told he had to wait until Thursday.

I called Jeff and asked him to bring a button down shirt for Hank to go home in. It took a few hours...more checks of vital signs, antibiotics given through the I.V., and discharge procedures. Hank's nurse, Jennifer, taught me how to empty the drain, and what to look for in terms of warning signs that something has failed in the flap surgery.

At 12:00 noon, a Hawaiian shirt-clad Hank sat in a wheelchair and said his goodbye's to the nurses and other patients in the pediatric ward. We left the wheelchair at the door and Hank made the walk across the street to the apartment. Jeff decorated the walls with the Spongebob appliques that I bought and lined up Hank's stuffed animals on the back of the couch. It was such a nice little "homecoming".

The first thing Hank looked for was the mirror. I put a stool in front of the bathroom mirror and Hank saw himself for the first time. He was upset with what he saw. "I look weird!" he exclaimed. I'm sure that Hank is wondering what the hell happened to him. He didn't look that bad before surgery. I don't think he really noticed his atrophy and now the left side of his face is extremely different. They put in more tissue than needed to make sure it "takes", so instead of being atrophied on the left side, it is fuller! And still somewhat swollen...add in the bright yellow foam pieces that the sutures are tied onto, (to prevent scarring) and he DOES look weird!

But we will all get through this and I know Hank will continue to improve, both physically and emotionally. He has been through a lot. We never dreamed that we would one day need to go to New York and stay in a hospital. But thanks to Dr. Siebert and the good doctors and nurses at NYU Medical Center, we survived! And so at this point, we are grateful for where we are...Hank is watching "Star Wars, Return of the Jedi," with Jeff and I...and Lucy and Charlie are doing OK at home with Granny...the worst is over.

And so we celebrate this Independence Day as not only the day our country gained it's freedom, but also as the day that Hank gained his independence from the hospital and perhaps even the freedom from Parry Romberg Syndrome!

Surgery Day!

2009-07-02T19:44:00.000-07:00

Hank's surgery was today. What a day! All I can say is that I am not just proud of our boy...I am in awe of him! He never showed one ounce of fear. Not even once!

We rose early to a rainy Thursday... we had to be at the hospital before 6 am, but we let Hank sleep as long as possible, waking him at 5:40 am. He had to fast, so we thought it best to wait until the last minute to get him up and hopefully he wouldn't get hungry before surgery. (It worked, by the way)
At the hospital, we signed the appropriate paperwork and were brought into a surgical waiting room. They told us to have Hank change into a gown, which was adult size and enormous on him! The nurse went hunting for a children's gown and came back with a toddler size gown that would've fit Lucy perfectly but was more like a shirt on Hank! But luckily, she had grabbed another one that fit a little better...but for modesty's sake, we covered him with a blanket!

After Hank changed his clothes, the technician came in and took his vital signs, and weighed him. She checked Hank's bracelet, asked him his birth date and confirmed why we were there. Then she left us to wait for the nurse. The nurse came bustling in and quickly took a seat. She looked at Hank and introduced herself. "Are you Henry?" she asked. Hank said "Yes". "Can you tell me your last name?" He did. And then asked him his birth date. (can you see a pattern?) When she learned that we are from California, she got excited and told us that she loved California, especially San Diego because the climate reminds her of her home country, Israel.

The anesthesiologist was next. He swept in, wearing his green surgical scrubs complete with surgical cap. He quickly introduced himself to the three of us and sat down to talk to Hank. Once again, Hank was asked his name and birth date. The doctor explained to Hank that it was his job to make sure Hank stayed asleep, was breathing comfortably and monitor how he was doing. "See," I reminded Hank, "remember when I told you that there is one doctor, who's sole job is to watch you? THIS is the doctor!" The doctor confirmed what I said and then told Hank he needed to talk to mom and dad. He explained to us that he was going to put Hank under using a mask, and then would insert the appropriate IV's. He also explained that he would be putting a tube down Hank's throat to help him breathe. He said that he would try to have it out by the time Hank went into the ICU, but if Hank wasn't strong enough to breathe on his own, he would need to be on a respirator. I think the color must have drained from my face, because the doctor said, "I just want you to know that it's a possibility!" He also told us that although he didn't expect it, he would do a blood transfusion if he thought Hank needed one. None of what he said was a complete surprise, but still a little startling, to hear all at once. We signed the consent for anesthesia and the doctor set off to prepare for surgery.

Next came the surgical nurse, who again, confirmed Hank's name and birth date. She also confirmed what the surgery was, what side of his face and asked us the name of the procedure. After that, we were visited by the "Fellow", who is the MD working with Dr. Siebert, then the resident, the chaplain and then the anesthesiologist again. It was very busy, but it felt so good to see how careful they are ...making sure that they have the right patient, the right information and the right procedure on the correct side of the body. They came and gave Hank a liquid sedative to relax him and that is when the fun started!

They moved him into the gurney and put up the sides...I didn't know why until the sedative kicked in! He started to get so silly. First he started getting louder and then he got a loopy look on his face. "Whoa Dad...you have four eyes!" and then..."mom, why are there two of you?" But my favorite is when he said, "Let's get this party started!" and made the rock and roll sign with his hand and used his stuffed animal as an air guitar! Hilarious! He had the giggles and everything.

By the time Dr. Siebert came in, Hank was fully under the influence. Dr. Siebert cracked up and said, "Now we know what Hank will be like in college." (He better not!!) Dr. Siebert grabbed a Sharpie and signed Hank's left temple. "I just initialed your head with permanent ink, Hank! See you in the OR" as he left the room chuckling to himself.

The nurse came in and gave me a white "bunnysuit" to wear into the O.R. As well as the booties and oh-so-stylish surgical hat and a mask. The anesthesiologist and surgical nurse came in, grabbed the gurney and said, "Let's go!" Jeff gave Hank a quick kiss goodbye and the three of us headed to the operating room. Hank was totally mellow and somewhat passed out as we went.

Once in the operating room, I continued to hold Hank's hand as they put monitors on his chest and piled blankets on him to keep him warm. They lifted him from the gurney to the operating table. Seeing him on that narrow table, looking so small and so frail put a lump in my throat. We all talked to Hank as they strapped him to the table and put the anesthesia mask over his nose and mouth. "Just breathe in, Hank, like I told you," said the doctor. I told Hank that he was going to do great and that I loved him. The doctor warned me that sometimes kids twitch as they go under and not to freak out. Sure enough, Hank started twitching. "OK mom, he's basically out. Give him a kiss and leave him to us!"

I gave him a quick kiss on the forehead and left, but as I did I turned around for one last glimpse of him, laying on the operating table surrounded by doctors and nurses, preparing him for the surgery that will change his life. A momentous moment that I never want to forget!

I found Jeff out in the waiting room, settling in for our long day of waiting. Jeff dozed off and on, while I sat holding Hank's stuffed dog, "Scruffy". I sent a text message off to friends and family that Hank was in surgery. 8 o'clock...the clock had started. After three hours of sitting there with no word on how Hank was doing, I went to the nurse's station and inquired. Pretty soon, Pat, Dr. Siebert's nurse practitioner came bounding through the door. "Hi, he's doing great!" she exclaimed. She told us that they just finished harvesting the tissue from Hank's back and were getting ready to to the "under the microscope" stuff, which takes the longest. Pat promised us an update in 2 hours and told us to go eat.

Even though I felt that Hank was in the best hands possible, I still felt relieved hearing that all was going well. Jeff and I set off for the 20 minute walk under rainy skies, to the hotel to pack up some comforts for Hank and overnight bags for the two of us. We took a few moments to jump on the computer and send out an update and then walked back to the hospital.

The next update came through that, "Hank is doing great and we are right on schedule." She told us that the next person to give us an update would be Dr. Siebert himself. And sure enough, at 3:45, just shy of eight hours, Dr. Siebert came through the double surgical doors, with a huge grin on his face! He sat down and gave us a rundown on how the surgery went. He said all went great. That he was able to get tissue for the biopsies that we wanted, that Hank did well, and that he was able to put in the right amount. He said we will need to come back in 6 months for a "revision" and he would fine tune things. His point was that "We are going long term, for the next 70 years, not immediate". I loved that. I can't say enough good things about Dr. Siebert. He spent quite a bit of time with us, explaining things and just having normal conversation too.

We had been told that it would be about half an hour between the surgeon coming out and seeing Hank in the ICU, and that a nurse would come and get us. But Dr. Siebert jumped out of his chair and said, "Let's go see Hank!" Of course, Jeff and I looked like pack mules with our backpacks and duffel bag. We ended up walking up four flights of stairs since the elevators are so incredibly slow at the hospital.

Dr. Siebert had us wait a minute while he went in and checked on Hank. The ICU unit is painted bright yellow and feels like a happy place. Hank's room has 6 beds, with a recliner next to each bed. Dr. Siebert called us in, and we made our way through the room to the bed nearest the window... and there was Hank. He was sitting up in the bed, surrounded by hospital staff, shaking from the anesthesia and whimpering, with tears falling down his cheeks. His little face was as expected, bruised and bloody, with stitches attached to "popcorn", running down his face. He had a drain from cheek to temple and another one from the incision on his back. But even though his face is traumatized, I think he looks great! His face is full again! Hurray!

Jeff and I rushed to his bedside to calm him. We were all relieved to be reunited. After a short time, as the anesthesia wore off, Hank was almost back to his old self. And by two hours after surgery, Hank was giggling at cartoons and playing question games with us.

Because I have a cold, Jeff is staying the night with Hank. I will go back in the morning to relieve him and hopefully I get to stay tomorrow night. In the meantime, we pray that there are no complications and Hank's recovery is smooth.

Hank Takes Manhattan

2009-07-01T07:23:00.000-07:00

OK, so I have been trying to write this all day. Started this morning and got interrupted and now as I sit here trying to finish, it's just too much. There is way too much to say, and the fact is, in less than 8 hours, Hank's surgery will be starting. I tend to compartmentalize things in my life... And up until now, surgery has been in it's own little cubby waiting for me to deal with it. And now that time is here...and I don't think I am ready! But I am ready...I know, without a doubt, that this is the right thing to do. And I know Hank will be in good hands. And with people praying from coast to coast for Hank, he is in God's hands. But are we ever ready to hand a loved one, especially a child, to a hospital?

So, I have tried to give the short synopsis of these last two days in NYC, prior to surgery... Here is how I started it this morning:

It's Day 3 in NYC. I have a cold. A bad cold. I am so fearful that I will give it to Hank. If he gets it, he cannot have surgery until he is better. So, I sanitize everything after I touch it, try not to breath on him and we don't share any food... Pray that he stays well!

Jeff arrived this morning. He flew on stand-by and waited to get on a plane out of SFO. He watched the standby list dwindle to just one name as they closed the gate...HIS name! Darn! So he ran to the next gate, bound for Newark instead of JFK. The other ticket agent ran to his aid and helped the agent look for seats. It didn't look good...but the agent said, "come with me, and I will do a walk-thru." So Jeff waited in the doorway of the plane while the agent walked through. She came out and told him, "Today is your lucky day....we have one seat!" So Jeff got seat 1A in First Class and flew out on the red-eye. Unfortunately, his luggage went to JFK, but should be delivered later today. In the meantime, I hit the "Duane Reader" drug store and loaded him up with some essentials!

Hank was thrilled to see him. Lept out of bed and told Jeff, "turn around and close your eyes!" Jeff did as directed and Hank brought out the Lego Darth Vader ship that he built after his pre-op testing. "Turn around Dad"...Jeff was appropriately stunned that Hank did it all himself and Hank was so proud!

Yesterday was a fun day. We slept in very late, since we are still getting accustomed to the time change. But after getting going, we took a walk to Central Park Zoo, down 5th Avenue. It is such a cute place! Hank loved it. His favorite was the Kea Bird that looked like a parrot and spent it's time struggling with a cardboard box that was put in it's pen to keep it busy.

We saw penguins, polar bears, tropical birds... but no lions, hippos or giraffes. That movie "Madagascar" is a complete sham! There are no big animals at the Central Park Zoo... No dancing lion, no giraffe with his head buried in the sand, and no ninja penguins, no zebra on a treadmill and no singing hippos!

While looking at the sea lions, I spotted a whole group (herd?) of nuns, dressed in all white habits. I struck up a conversation with 2 of them and found out they were from San Francisco and work with the poor. They asked why we were in NY and I told them about Hank's surgery. They said they would pray for him and asked his name. I introduced Hank to them and they were so happy to meet him.

As we finished up at the zoo, the sky started getting darker and darker and an ominous wind blew through the trees. As we walked on the path towards the sidewalk, we heard the first booms of thunder! Our pace picked up as we made our way out of the woods. And as we approached the sidewalk, the heavens opened up and the rain started to fall. By the time we ducked into FAO Schwarz, it was dumping! What better place to hide from the rain, than a huge toy store?

We managed to waste quite a bit of time there with minor damage to the pocket book and headed back out on the street, in search of a cab. Susan hailed one, which did indeed slow down, only to drive away with Susan still holding onto the handle! I guess he didn't think our short ride was worth it! We were stunned and howled with laughter until a woman walking by said, "next time don't tell him where you are going until AFTER you are in the cab!" Voice of experience?

After getting back from the hotel and drying off from our summer storm drenching, we ran out had a quick dinner and hit the bed for a good night's sleep!

Today (Wednesday) was a good day. Susan and I had some time together this morning. We got on Facebook to catch up with friends and then had a quick brunch. It was good to just talk freely about Hank and his illness and his surgery. I feel so blessed to have Susan in my life. Everyone I know is busy, and she is no exception. But she dropped everything to come to NY with us, because she knew she was needed. I will never forget this kind thing she did for us. And I won't forget the laughter either!

She left at noon, to head to the airport and catch her flight home. I was so sad to see her go. She was so much fun and such a great support to both Hank and I. Hank was disappointed that she wasn't staying longer, but I explained that she needed to get home to her family. Speaking of the Hopkins family...thank you to all of you for letting your mom/wife/daughter come with us!

After Susan left, Jeff, Hank and I had lunch and went for a walk down 5th Street, to St. Patrick's Cathedral. It is so beautiful! Smack in the middle of all these skyscrapers, sits this majestic church, dwarfed by everything around it, yet holding it's own with it's magnificent spires. We went inside and were enthralled. Hank and I lit some candles and we all took a moment to pray.

Afterwards, we went to the priests' residence to have the medals and Rosary I bought at the gift shop, blessed. The priest, Fr. Joe, came out and blessed everyone's items at once. I then told him that Hank was having surgery and asked him to bless Hank. (Hank insists that he has been blessed enough...but once a week is not too much!!) Fr. Joe blessed Hank and talked to him about his surgery. When he learned that Hank had a web site, he asked us to type it into his blackberry, so he wouldn't forget it! How fun is that?

We spent the rest of the afternoon at the Chelsea Piers, bowling. Hank smoked me! Apparently, I am not a very good bowler... Bowling was cut short when Dr. Siebert, Hank's surgeon called. He said he could meet us at 5:00pm, so we finished our game and headed to NYU Medical Center.

We met Dr. Siebert in the lobby and he took us to the surgical suite on the 8th floor. We sat down and had an easy chat and then got down to business. He explained where he will make the incisions, what the surgery entails, the length of it and how Hank will feel afterwards. I think he used the word, "lousy"!

We also talked about the possible tests of infected tissue...and he explained there might not be enough tissue to test. That what he usually finds is scarring that tightens up and pulls the face. But if there is infected tissue we will test it for bacteria.

I've known for quite some time what the surgery will be, and yet hearing it and seeing it pointed out on Hank's face is scary. This is major surgery...big surgery...painstaking surgery...microvascular...with microscopes and everything! This is a big, long, major surgery! Probably eight hours long! And our boy seems so little! And although he admits to being a little nervous, I think he is fearless! Hank is my hero...he is so brave. And so I will follow his lead and be brave for him!

We wrapped up our appointment with the very capable Dr. Siebert and walked him out.

The rest of the night was spent looking for a particular restaurant that Jeff wanted to go to: "Junior's". The only problem was that we couldn't remember the name of it and couldn't remember its exact location. Hence another death march for Hank! But we ended up finding it and Hank got his promised -shake! We walked back to the hotel and ran into some Hank fans along the way:

Two of New York City's Finest, wish Hank good luck with his surgery...

And three aspiring recording artists take an instant liking to Hank and become fans. It even looks like Hank might be a part of their group!

So that's it. Our pre-surgery days are over. Now it's time to get to what we came here for. The surgery. I think we've done all we can up to this point. All the fundraising has gotten us here, the prayers and positive thoughts sustain us and lift us up, and our sense of humor keeps us sane. I know I've done my part in getting the prayers...between the nuns, the mass being said in Elk Grove for Hank, the priest at St. Patrick's Cathedral, friends, family, cops and rappers...we can't go wrong!

Thank you to all who have gotten us this far. We will keep you posted on how Hank's surgery goes and how he is feeling. If I am well enough, I will spend the night with Hank at the hospital...if not I will be back at the hotel and will update the blog.

This is it folks....please keep those prayers coming. We can feel them!!