Three Weeks?!?!?!?!

Nothing makes me happier than to sit down and write about a good day. Today was a good, actually great day. A much-needed great day too!

The last couple of days Jack has been struggling with a few things. We were all so excited about him walking on Tuesday. He asked me to see the video I took of him and he got real quiet for a while afterwards. I finally got him to talk about what was on his mind. The tears and quivering chin came out…he said, “I didn’t know I was going to look like that when I walked. Why are my arms doing that, I look silly.” He was upset and embarrassed by the huge limp he was walking with. So, Wednesday I worked with Jack, trying to get him to step rather than hop. By the time Jon got home that night, Jack was feeling much better. He met Jon at the door saying, “my arms don’t fly around when I walk now.”

Jack got an invitation to a birthday party. He was so excited to go, but I think he was a little nervous too. We were one of the last ones to get there and all his friends came running up to him. For about five minutes they asked him a lot of questions and then they all had fun playing together. We got into the car and Jack says, “Mommy, they didn’t even care about my leg. They didn’t even want to talk about it.” I was telling Jon about this later and I think his comment was right…Jack’s entire sense of self right now is defined by this fixator. It’s almost like he thinks of himself as the kid with the fixator. It's understandable how it's happened....we spend 4 days a week in therapy, anytime we go anywhere people stare and ask questions about the fixator, and I think he overhears Jon and I talking about it a lot. I would say our entire summer has revolved around this fixator, so yes...it makes sense. So, we were glad that spending some time with his friends helped to change that and I’m hoping with time his vision of who he is changes.

So today, we headed to Chicago to see Dr. Kogan. Jack was so excited, he insisted on getting her flowers and writing her a note telling her thank you, I love you, you are a “cool” doctor. Dr. Kogan walked in the room and he was so proud to get up and walk to her. It was such a neat moment to see how proud he was and how flabbergasted she was! He told her all about swimming, the leg press, and riding his bike. She was just absolutely blown away, she kept saying, “who is this kid walking in a fixator? And he rides a bike?!? How does he ride a bike?”

Then she shows us this:

And says this:

“I think it’ll be ready to come off in THREE WEEKS!”

I know it’s really hard to see on the computer, but on the upper right hand side is his foot. On the lower left hand side is his knee. I’ve labeled where start of the new bone is. The next 5.5 cm down is new bone. You can see from the x-ray that it is really close in density (whiteness) to the bone above and below it.

I’m not sure if it’s typical for bone to harden at the pace that his has. Jack likes to think he has super-bone-healing power, while I like to think it’s all the vitamins I’ve been pumping into him. Either way, we are thrilled that this thing is coming off in THREE WEEKS! I've never been so happy to make a trip to the OR! Dr. Kogan is so good to us. When she told us 3 weeks, we realized it’s the Friday before Labor Day. She told us she wasn’t going to be working that day, but would come in just for Jack that morning. I told her she really did not have to do that, but she insisted. Needless to say, I was very happy we had brought those flowers!

The knee surgery she had planned on doing upon removing the fixator is being cancelled/postponed. Nobody can explain it, but Jack’s knee flexion has increased so much through the lengthening. It makes NO sense, but everyone is in agreement….we’ll take it! She won’t be putting him in a cast because she doesn’t want to lose the flexion he’s gained. She was talking about some sort of flexion brace…to be honest, Jon and I were so flabbergasted I don’t think we really listened well enough to know what he’s going to have on afterwards. I know we already have a list of questions about how the pin sites will heal, what sort of shoe he can wear, etc etc. We’ll call her sometime before September 4th and get some answers.

She gave us a prescription for an small external shoe lift. We could do it internally, but she thinks it’ll be easier for him to relearn how to walk with the external lift. Over time we can gradually switch from an external to an external/internal combo to finally an internal lift. Jack wasn’t bothered by having a small lift on his shoes….as long as he can wear his fuzzy crocs (which is fine, he can go without a lift at times).

So, yes….we are so so so happy tonight! Here’s to hoping the next three weeks goes by quickly and smoothly!