Moving On

Little by little Nick’s leg is healing. All the pin sites are, which I guess are no longer pin sites are getting smaller. The only issue he is having is in moving his leg in one particular motion. I am thinking of calling Sinai today just to check and see if it is a problem or just something we need to work on with physical therapy.

The removal went so well. ┬áHaving the rod put in and not getting a cast as worked out for Nick so far. He is still not full weight bearing and I am having trouble getting him to use the walker. He’s totally willing to use the wheelchair for longer walks but he really wants to be free.

It’s going to take some time before his walking is back to “normal”. I am not really sure what his normal will look like but so far it seems not to be hurting and thats all t he normal I need.

The kids started camp in our new neighborhood last week. There was a giant inflatable water slide for Nick and Charlotte’s group on their first day. Charlotte did not want to do it but Nicholas was so excited. Climbing to the top was really hard for him. Watching him was so emotional for me. It reminded me of the Miley Cyrus song “The Climb” that came out during Nicholas last lengthening. Nicholas took a really long time to climb up. There was a line of kids waiting behind him and none of the kids said anything. I really worried since they had to wait a much longer time for their turns and had less turns than the other group because of Nick but everyone was kind. If an kid complained I did not hear it. I think this really is a great neighborhood, if the kindness of the kids is any indication I feel certain it is a great neighborhood!

The best part was Nicholas and his cheers of pure joy as he went down! All the kids liked it but not screamed like he did. It almost made me cry! He was so happy. I was so scared and happy and proud. Nicholas is such a strong boy. None of this has been easy for him. Moving has complicated things as well but he still putting himself out there and trying.

He hasn’t gone to camp every day so I am not sure how often he will attend but I will be happy if he goes to some days. Yesterday there was not camp but there was a great celebration called Games on the Green, which was mostly races for all ages, some silly races and even dog races. Our crew really wasn’t into the competing but Christopher participated in a bicycle parade with his group from camp and Nick and Steven did the three legged race. They of course were not the fastest, certainly didn’t come close to winning but seeing them out there, seeing Nick just do it was the best. It was a clear sign to me that he is moving on and that the best thing possible for him. Leg lengthening and reconstruction for fibular hemimelia round three is almost completed. Our family made our move and we love our new community.

We’re moving on and it’s bittersweet in so many ways. We already miss friends and family in PA and we’ve only been gone a week. I’ll try to focus on the sweet, get the kids ready for camp and keep moving on.

17 centimeters

Adding up the length from each surgery Nicholas has gained 17cm through leg lengthening. I think he still has 7 left but that can all be done internally. This was the biggest surgery and it is over. Dr.Standard removed Nick’s fixator and put a rod in his tibia this morning! Like most of his past surgeries this has gone pretty smoothly. I did not really cry in the operating room when I left him. Usually the walk back to the waiting area is so hard but I asked the fellow who walked me back what his plans were because I knew his fellowship was ending. He told me that his next fellowship would be in trauma. I said “Trauma really? This is traumatic enough for me”. I guess I must have been ok if I was making jokes!

Since at our last appointment we didn’t have a set plan for removal I really didn’t ask many questions about the rod and for whatever reason I did not realize Nick would need to stay overnight. It has actually worked out so well! At least here at Sinai. I hope the kids are doing ok in PA with Grandam and Grandpa. They sounded great when we called them (they sang happy birthday to me) but I hate to be gone longer than we said we would be. I am so grateful that they are with my inlaws, otherwise Nick and I would have been alone and not had an awesome birthday dinner and movie night here in room 3122.

Nicholas has not been in pain at all. I did ask for his pain meds to be given because I didn’t want his blood pressure going up like last time. Still he seems tired but ok. He is so happy to be fixator free. He was even so calm this morning. He didn’t have happy juice or anything before surgery and had an anesthesiologist today that he had not had before but he was a really kind man. There were plenty of other familiar faces throughout the day. It is still surprises me how familiar this place is and how comfortable we are here. It’s nothing you expect in life but hay it is what it is!

When Dr.Standard came out to tell us how everything went he explained why Nicholas would need to stay over night. It’s really just the antibiotics because of the rod. He has a protocol he follows and I would not question his methods. That conversation we have each time when surgery is done but Nick is not really out yet is such relief. Once I see Dr. Standard and he says everything went great I finally exhale! We always talk a little about whats next but this time whats next should be really far away. Nick can have the rod in for years if it does not cause any problems.

Dr. Standard has been Nicholas’s doctor through this whole journey, each surgery has been at Sinai, each time we have family and friends helping along the way and every outcome has been excellent. Every day I am grateful. Without the love and support of so many people this really would not be possible. Nicks right leg may be longer or he’s finally even. That is amazing! If he had had no surgery his right leg would already be almost 8 inches shorter than his left! That seems crazy but thanks to 17 hard earned centimeters Nicholas has a far different reality!