Tuesday, July 27, 2010

First Week of Recovery

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...

Tuesday, July 20, 2010

Third Surgery's a Charm...

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!

Monday, July 19, 2010

Night Before Surgery: Round 3

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.

Friday, July 16, 2010

Hank Meets the Press!

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...

Monday, May 17, 2010

A Mother's Heart

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!

video

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...

Saturday, February 27, 2010

From Lowest of Lows to Highest of Highs

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!

Sunday, January 10, 2010

Stitches Out ~ Compression Tape Off!

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.