Doctor and school updates

We went to see her neurologist last week. I keep thinking doctors are for making your kids better. But Rett doctors are not. They’re for making sure your kid doesn’t get worse. It’s a bit of a change for someone like me who is the first to head to a doctor with any illness or pain. But there are no answers yet. So every visit to a doctor is just for the sake of getting baselines. It’s a lot of effort for baselines and no answers, but I guess we figure if we keep going, when there is an answer we’ll be the first to know. But sitting in that pediatric neurologist’s office, I can’t help but realize how desperately I want to find a cure.

We also went for her annual cardiologist visit. Girls with Rett are at risk of having something called Long QT syndrome which is one potential cause of …gulp… sudden death. Now, not everyone with long qt dies and not everyone with Rett gets it, but everyone with Rett is at risk. So, every year we have to go to see if she has developed long QT syndrome. For the second year in a row I’m pleased to share that she still does not present with any heart abnormalities. But sitting in that pediatric cardiologist’s office, I can’t help but realize the urgency of finding a cure.

We also went through another IEP (individualized education plan) this week. Fun stuff. These are the meetings where the district therapists and administrators tell you all the things that are wrong with your kid and all the potential they see in her. Sometimes that’s positive. Sometimes it’s not. You may remember the fight I went through the end of last year. That was not that positive, though the results of the fight were acceptable. Well, in this meeting it was all the same people who have, at this point, had the chance to work with and assess Maggie more fully. While they still, inexplicably, don’t see a need for physical therapy, they do see a lot of potential in her. As a result they’re making us a very nice offer and giving us all of the services we could hope for. But with new services come transitions and we’re just getting used to our current situation. We’re grateful that the district is recognizing her progress and trying to help as best they can. But, man, sitting in that meeting of school administrators, listening to how great she’s doing, though she tests at a 22 month level, reminds me of how urgently we need to find a cure, how much harder I need to fight.

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