Today Nicholas and Steven went down to Baltimore for one last x-ray to make sure Nicholas’s bone is ready for removal and it is! Dr. Standard was not sure if his bone was %100 healed but it is healed enough for removal. He wont know till they are in surgery and at that point he will determine what kind of cast Nicholas will have. His options are a full leg cast or a below knee removable cast. If the cast is below then knee and the and the bone is not fully healed it could cause a fracture. Steven tells me that Dr. Standard was not totally happy with the x-rays taken today and that is why he is not sure exactly what he will be doing with my boy’s leg.
Another unknown is whether he will put and 8 plate in Nick’s knee. Apparently his deformity can cause knock knee (also known as valgus) on the effected side and we always knew this was the case for Nicholas. We have discussed the 8 plate with Dr. Standard on several occasions so it is no surprise. I had kinda forgot about it though. For anyone interested the technical name for the procedure is a hemi-epiphysiodesis (sorta makes fibular hemimelia look easy doesn’t it). It means is that they will restrain one side of the growth plate with an implant shaped like the number eight. The other side will continue to grow and correct the deformity. The eight plate may be removed when Nicholas has his knee surgery or as an outpatient procedure. I guess it depends on how long it needs to be there.
Meanwhile Nicholas has been counting down leg washes for about a week and a half. For some reason we thought it was easier to count leg washes rather than days. Counting tonight there are four. I was kinda sad not to get to go to his appointment with him today, since I had not missed any related to this lengthening. With his last lengthening I missed many because I was crazy pregnant with Charlotte and then Charlotte was born and I was nursing so either way I could not go in with him for the x-rays. We have had such good times Nick and I, chatting during the drive, eating in the cafeteria, drawing on that paper they put on the exam tables, stillness contests during x-rays, making friends in the waiting area and countless other little moments all our own. It really is only fair that Steven get to have some moments too but Nicholas had always insisted that I take him. It seems to be a lot easier to remember the fun times when the light at the end of the tunnel is so close! But honestly I think we made the most of out trips and our time. The 2 hour drive never really bothered Nick and I loved being able to give him one on one attention which can be really hard to do with 3 kids at home.
I know I will spend the next few days totally nervous. Not so much because of the surgery but more because I am worried that Nick will get sick before the surgery. With H1N1 hitting our area it is scary. If he is sick at all he can’t have surgery and for good reason but I would hate for him to have to stay in his fixator longer and be sick! I am sure I am not the only one worrying about this and I really would love to keep him out of school till next week but I can’t let my anxiety take over. Nicholas would be really mad at me if I told him he could not go to school.
So this is it. Just a few days and lengthening number 2 will be done. I can’t believe it. Sometimes it feels like it was just yesterday that I was handed that piece of paper that said ‘fibula hemimelia’. And yet here we are 6 years later. I have to write it again because it is how I feel, I wish I knew 6 year ago that Nicholas really would be ok and that his leg would work so well for him! I would be lying if I said I didn’t sometimes wish this had never happened to him and that I’d never heard of fibular hemimelia. No parent wants to watch their child suffer in any way. And yet, and I never ever thought I would say this (and totally mean it) but I am beginning to believe more and more that things are as they are meant to be. The easy, the hard, and everything in between. Just as I felt the morning he was born, that I could not wish away fh because that would somehow be wishing away my boy, I still feel that today.
Last week he fell hard on his fixator and landed on a half pin really hard (these are the thick pins that go half way though and hold the fixator in place). He screamed in pain and I asked him if he needed the yucky medicine (as opposed to the standard Tylenol) but he said no. In just a few minutes he was ok so I figured he had not injured himself. That night there was a little blood around the 1/2 pin. Which is not uncommon for that particular pin anyway but during pin care Nicholas said “Mom you should take a picture of that pin site and share it with the moms on the web chats so they can tell their kids not to do what I did so they don’t get hurt”.
Today I saw the quote below and it really made me think. I could not have planned this life of mine if I had tried nor could I have planned Nicholas’s. No one plans birth defects for their child but these things happen. All I can say is that I have tried to do the best with the life that I have and more importantly I have tried to make the best life I could for Nicholas, give him the strongest possible foundation and all the love he could stand. Today I wouldn’t change a thing.
“We must be willing to let go of the life we’ve planned to have the life that is waiting for us.” E.M. Forester