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...


  1. Thanks fro the full update, I enjoyed reading it! Ya got some good pictures and lasting memories regardless why you were there. Hank is doing so well I am amazed every time you share stuff. Hope you all can come to the coast and we can try for another mini reunion! Get some rest and continue to take it day by day, Hank is gonna do great in life, you can just tell!


  2. I saw Hank's story and interview on Channel 10 in July and was moved by how brave a nine-year-old can be. I prayed for a successful surgery and I am so grateful for the news! I will be following this young man's progress and keep him in my prayers. He has been an inspiration to me, helping me putting things in perspective and appreciate life more.

    Great job for raising such a wonderful boy!