The Daughter Chronicles

Monday, March 09, 2009

Update on Mia

It's been six weeks since Mia's surgery, and she's slowly but (we hope) surely getting back into the swing of things. Last week we put her AFOs back on, and she was fine with it. She's been wearing them all day at school without incident. We also decided to put her vest back on, because her breathing was very shallow (steady but shallow) and all the good her vest had done seemed to have vanished. She was speaking very quietly and with less clarity than she had been, and we figured it was because her chest muscles had atrophied so much. She's been fine with the vest over the past week, and it's having a positive impact, as her breathing has become stronger.

She still has plenty of pain, though, which is probably not surprising. Her muscles are very tight, and any movement brings whimpers of pain. It's never been fun getting her AFOs on her feet, but in the past week, it's been even worse, as she hollers whenever we bend her knee and flex her foot. Her PT says that she's moving around and when she reaches a point that doesn't hurt as much, she locks up and then can't relax. Of course, then her muscles start to ache in that position, but then she can't move because she's locked up. It's a bit annoying for her when she sleeps, because it wakes her up. But we're stretching her out, trying to slowly work her muscles back to a state where she doesn't screech whenever we pick her up. The worst part is when we have to give her a bath, because that really makes her grumpy. Changing her diaper is getting a bit better, but it's still upsetting to both her and us when we have to move her around.

The biggest problem we're having with her is her eating, which is still atrocious. At school they're getting her to eat a bit, but she's still being a pain about it at home. I called a psychologist her speech therapist recommended but haven't heard back from yet. She doesn't seem to have any physical issues with eating, so we're forced to conclude that this is one of the few things she can control, so she's exercising it. It's very annoying, and we're worried about weight loss, but right now she still seems healthy. I don't know if the psychologist will be able to help (or even take the case), but we'll keep trying.

So that's where we are with Mia. She's doing well, but like everything else with her, she's going very slowly. In a few weeks she goes back to the doctor, and I imagine he'll say it's okay to start physical therapy again. Boy, won't that suck. You might be able to hear the screams!


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