Thursday, June 5, 2008


Last week we went for a consult at a children's hospital near here to learn more about botax and selective dorsal rhizotomy, both of which were recommended by Hannah's physiatrist. We know that SDR is at least a year off but we thought since we wanted to find out more about botax, we might as well ask them about the surgery while we were there.

So here's how it goes when you consult with a specialist about your kid's care: you carry all of this hope with you along with your notebook of questions and you lay it all on their table and pray that they are the ones with the magic answers. That they'll say, "she looks amazing and her case is so mild. We can definitely make this much, much better with our cutting-edge, little to no risk procedure."

Yeah, it wasn't quite like that. But we did learn that it makes sense to do botax first, before considering SDR. That she may do so well with botax, SDR might not be necessary. That if we do think SDR is a good option for her, she would be a really good candidate for it. They ("they" refers to the neurosurgeon, physiatrist, orthopedist and nurse practitioner who were all part of the meeting) said that compared to many of the other kids they work with, Hannah's spasticity is actually not that bad. That she is bright and she has a built-in motivator in Isabelle and she has obviously committed (their words, not mine!) parents who will give her every opportunity to succeed so all of these things are in her favor.

So this was good to hear.

But they also talked about her deficits: not just spasticity but also motor control problems and weakness. Spasticity mostly in her legs but also in her arms to some degree. Problems sitting well independently. Hyper-reflexes. Slight scissoring of her legs. When I asked about her ability to walk without any assistive devices in the future, neither the neuro or the physiatrist was too positive. They focused on "functional mobility" and mentioned forearm crutches or canes.

None of this is news to us but that doesn't make it any easier to hear.

As we were leaving the hospital, we saw a man playing the piano in the lobby. The girls were totally entranced and both sidled up close to him to watch, Hannah in her walker and Isabelle standing right next to her. I thought, "this is what's important: listening to music, hanging with family, enjoying the moment." And that's what I'm going to try to stay focused on.

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