The Daughter Chronicles

Thursday, May 24, 2012

Weights and measures

Today is the last day of school, but I'll write about that this weekend. For now, I wanted to mention that Mia went to the gastroenterologist last week, and she got ... weighed and measured! She was 56.7 pounds, which is the most she's ever weighed (I've been weighing her every day, and she's usually between 54 and 55 pounds), and she was 53.15 inches tall (135 centimeters). So her body mass index is doing well these days, which is nice. The doctor was very happy with her progress, and we're able to cut back on the high-calorie formula we've been pumping into her. So this summer we're going to try some actual food (she's still eating very, very little) and some other combinations of blended stuff (anything we can liquefy, we can put through her tube!). For now, however, her weight issues have been resolved. Of course, we'd still like to take the g-tube out, but with her eating habits, who knows if that will ever happen. Now, it's time to get her muscle tightness resolved! Next week she's getting a Botox injection, so maybe that will help. We'll see.

Sunday, May 13, 2012

Educational and neurological updates!

We have been trying to figure out what's going to happen next year at Mia's school, and we have some new information about it. Mia's principal had a big meeting with all the special ed. teachers, and apparently it was a good thing. She's going to have a new teacher, unfortunately, but it's a teacher who has been there for a while, knows Mia a bit (her classroom is right next to Mia's this year), and has experience with special ed. kids. She's had so many first-year teachers, so the fact that her teacher next year will not be is nice. Apparently the class is very small, too, which is always cool. One unfortunate problem is that her aide of two years is retiring, so she'll get a new one next year. The aide she has now started off with some problems, but she's gotten a lot better this year and she has a good relationship with Mia. We hope that the new aide will get up to speed quickly, because some aides in the past have had some issues with Mia - they usually pity her a bit too much and take it far too easy on her, until she starts pinching people and then they realize she's a typical kid and they need to treat her as such. We'll see how the new aide does, but at least she'll have an experienced teacher in a smaller class. So that's nice.

We also took her to see her neurologist, because it had been over a year since we'd seen her. Her seizures haven't been getting more frequent, but they have become a bit more intense, and we think it might have something to do with her weight gain and the fact that she might have outgrown her medicine dosage. Her neurologist didn't think so - he said the dosage should be fine, but he increased it just a little bit to see what would happen. We're taking her to the doctor to have her blood drawn so they can check her levels, and if they're fine, he said she'd have to have an EEG and possibly switch meds. He said the nice thing about seizure medication is that there are quite a lot of them, so we can try some others if we have to. Nobody thinks her seizures are harming her in any way, but they do wake her up at night, and that, of course, makes her sleepy during the day. It would be nice to get them under control.

Finally, Mia saw her orthotic surgeon this past week, and he was very happy with her flexibility. It's still not perfect, but she is getting better, and it's nice that the surgeon thought so. We really didn't want to do more surgery, although that still might be in her future.

We'll find out this week if her meds are working well enough. Won't that be fun!