appointment update

We had an appointment with Dr. Kogan today. The xrays were amazing, we have 3 cm of bone growth! Dr. Kogan was REALLY excited, you could tell she was having one of those “this is why I do my job” moments. It was very neat to be a part of that! She thinks the reason we are having difficulty turning the struts is because his bone is healing so quickly each day. We asked what that means and she said, “It means we need to hurry up.” We can’t turn more than 1 mm a day, so she was joking…but I think that the more we lengthen, the harder it will continue to get and eventually we won’t be able to do anymore, and at that point we’ll be done. This is just *my* thoughts based on what I’ve read, heard from other parents, and from things Dr. Kogan has said. I am hoping that the quick-healing means that the consolidation phase (bone hardens, still in fixator, can be weight-bearing) goes smoothly.

I think Jack is getting another infection in the same pin that was previously infected. I’m not sure it ever really cleared up. We’re going to keep an eye on it, he will be getting a super dose of antibiotics in the OR on Monday, so hopefully he’ll be fine until then and that will do the trick. This one pin has been problematic, it’s really the only one that bothers him. Dr. Kogan said technically she could take it out, she wants to keep it in until the lengthening is over (~30 more days).

Jack’s PT pointed out to me that Jack’s foot seems to be dropping a little (like as if he is trying to point his toes). I think it’s called plantar flexion. Anyway, he was fitted for a new foot brace (I’ll post a picture tomorrow). He did not like it at first, but I stood him up and showed him how his toe is touching the ground and the rest of his foot is not….he realized that’s a problem. We told him if it continues to get worse, he’ll need a foot surgery after this was over and amazingly enough…the new foot brace was much more tolerable after that!

Overall, a good appointment. The worst part was the car ride. The poor kid is just miserable in a car seat.

Cute story….the other night we went out for dinner. As we were leaving, Jack (in the walker) was trying to open the door. He got really angry and says to me “all places should have those doors with the buttons you push to open the door (referring to handicapped-accessible doors).” I told him that I would help him open the door and he got so worked up and says *he* wants to open the door for himself. He went off on this rant (I was very proud, I love a good rant) about how places are just not made for people in wheelchairs and walkers and how it’s not fair and he tells me “it makes us feel sad and frustrated. We want to do things for ourselves.” Jon and I explained to him that when he could do something about that…grow up to become an activist, lawyer, etc. Fast forward to today….we’re on our way to Max’s t-ball game and Jack says it would be fun to grow up and be on television, but “I’d rather fight for the wheelchair people.” Then he asked me not to forget that because that’s really what he wants to grow up to do, but he’s afraid he’ll forget when he’s bigger what it is he wanted to grow up to become!