The Daughter Chronicles

Thursday, September 13, 2012

Mia's new brace!

Yes, it's always cause for celebration when Mia gets new braces. Isn't that what you celebrate in your household?

We decided to get Mia a new brace because everything we've done to help her straighten her left leg - baclofen, Botox, lots of stretching - just weren't working as well as we wanted them to. What she needed was a very long stretch, and we just weren't equipped to do that. First, when I write "long," I mean a stretch through her left leg for hours, not minutes. Her muscles are so tight (and it's mainly her hip flexors that are causing the problem, but her hamstrings are tight, too) that a human being stretching them has some problems, because she's pushing against your hand so much. So a KAFO seemed like the solution - it gradually stretches the leg, and it can be locked in position so that even if her muscles struggle against it, she can't bend her knee. She can keep her leg stretched for a long time, getting a nice lengthening of the hamstrings and the muscles in her knee, which are in danger of being contracted. We need to buy her a new gait trainer because she's outgrown her old one, and once we do that, we can get her standing more often, which will stretch out her hip flexors. Good times!

She's actually not having too many problems with her new orthotic. I don't think she loves it, but she doesn't whine too often about it. It helps that we don't have her leg stretched out all the time, so she does get a break. I haven't gone to her school yet and seen how they are dealing with it (I told them to put her on the floor a lot and stretch the leg out), but we'll see. We thought we would have to put it on her at night, which would be very uncomfortable (as you can see below, it's awfully bulky), but she's only supposed to wear it for eight hours a day, so I just put it on her at 7 o'clock in the morning before she goes to school and take it off right when she gets home around 3. It's handy. It's working slowly - she still pulls her legs up in a fetal position too often when she's not wearing her braces - but it's definitely working, because she's able to straighten her legs a bit better when she's not wearing it. As with everything we do with Mia, we know we're in for the long haul!

Here are some pictures of the brace:

This is the lock on the outside of her leg. You can place her leg in any position you want, and then lock it there!

Notice how far up her leg this sucker goes. She doesn't dig that.

Mia sitting like a pro!

I hadn't posted a picture of her bald spot yet, but there it is!

We took her to her psychologist last week, even though she seems to have eased off of pulling her hair out recently. The doctor prescribed Zoloft, but I haven't actually given her any yet. We picked up the prescription on Saturday, and I forgot to give it to her until Tuesday, but she threw up (as she occasionally does) before I could give it to her. Yesterday evening, she was really, really tired, and as she often throws up when she's that sleepy (she didn't yesterday, but it's always a possibility), I didn't want to give her a pill. So we'll see if she's ready to take it today! Her hair is growing back, slowly, but we don't want her to pull it out again! The doctor said the dosage she was starting her on was very small, because she doesn't want to hit her with it all at once (plus, she's already on a lot of medication for various other things).

So that's her new brace. It seems to be working, and once we get her standing, I imagine it will work even better. Slow and steady wins the race!