The Daughter Chronicles

Sunday, August 03, 2008

Mia's busy week

Mia had a busy week last week, and therefore I had a busy week. It was the first of the two weeks she has off between the end of summer school and the beginning of the school year (yes, she starts her school year on 11 August, and that's a week later than schools in Tempe start), otherwise known as the two worst weeks of the year. She had two weeks off between the end of school and the start of summer school, but it was cooler here then. Now, it's almost foolish even to go outside, and finding things for Norah to do is hard enough, much less Mia.

On Tuesday the 29th I took her to the hospital. Oh, nothing bad happened - it was scheduled! Why would I schedule an appointment at the hospital, you might ask? Well, a few weeks ago we thought she had a urinary tract infection. The doctor who saw her at the pediatrician's office asked if she or her family had any kidney problems, and I told him off-handedly that Krys has polycystic kidney disease (PKD). He freaked out, as they did not have that nugget in their archives. He immediately ordered an ultrasound on her, even though PKD is a middle-aged disease, so even if she has it, it won't manifest for years and years. Oh well - better safe than sorry, I guess. She went in and got the ultrasound, and didn't really enjoy the experience. Ultrasounds are pretty boring - they put that goop on you and run that device over it, and it takes forever to get a reading. Mia is not known for her patience (she's patient in certain situations, but not in ones where you want her to be), and she doesn't like lying flat on her back, so it was kind of a pain in the butt. But she managed to get through it, and only whined a bit when it lasted a little longer than she wanted it to.

On Thursday (yes, I deliberately skipped Wednesday, but I'll get back to it) we went to a different hospital - this time, Phoenix Children's Hospital, which is where she spent most of her time after her accident. She had an appointment with the neurosurgeon who put her shunt in and gives her botox injections because we hadn't gotten botox in a while and she needed to meet with him in order to start it up again. Her neurosurgeon is a very nice man, and he checked her out and said he'd schedule the botox injections. We also asked him about the fact that her startling has gotten worse. She startles very easily and has a violent reaction to it, twisting around, hyperextending her left arm, and holding her breath while her face gets red. After that she smiles, but it's unsettling. We mentioned it to her neurologist in January, but he said it wasn't a seizure, just a startle reflex. Her reactions have become worse, so we asked the neurosurgeon about it. He suggested we try some baclofen, which is a muscle relaxant and anti-spastic drug. We're giving it a try, but its side effects are tiredness and spaciness, and that's one thing we don't want. Mia was kind of spacy when she was on more seizure medication, and we got her off most of them because of it. So we started her on the baclofen, but we're keeping an eye on her. We'd rather she startles violently occasionally if it means keeping her focused.

Back on Wednesday I had to take her to downtown Phoenix. A few weeks ago she got new ankle-foot orthotics (AFOs). I have written before about her therapists' motives, and her therapists disagreed on whether she should get an AFO on her right foot or not. When she walks, she points her right foot and therefore does not strike the ground with her heel, which is the correct way. She also tends to point the foot outward, which screws up her motion. Her home PT is convinced that these problems can be corrected through practice on her part, and he resisted putting an AFO on her right foot. The AFO locks her foot into a 90-degree angle to her ankle and so takes care of that problem. I was on his side, because I don't want her to use the AFO as a crutch later on in life. Her horse/swim therapist desperately wanted to put an AFO on her right foot, because she was very worried about her posture and her back and figured having her feet planted on the ground would help stabilize her hips, which is where her real problems are. We went back and forth for a few months until I had to get a new AFO for her left foot because her old one was too small. She definitely needs one on her left foot, so I figured I would ask the orthotic guy about getting one on the right foot while he measured her for the left one (he takes a mold of her foot and makes it specifically for her). He told me that if she continues to point her foot, she might screw up the tendons in her ankle. Plus, pointing her foot outward means the bones on the outer part of her foot might need surgery. Once I saw that getting one wasn't as expensive as I feared, I decided to get it. She could use it for a while and if it didn't work, we could always ditch it.

She got the AFOs the day after we got back from Pennsylvania. We also got a wrist splint for her. It's been a few years since she wore a splint, and it helped quite a bit. But once she figured out how to take it off, that was that, and she was done with it. We tried to figure out how to get her a splint that she couldn't take off, but it was tough. I spoke to the orthotic guy, and he got her one that we decided to put on her at night. That's a pain, but it can't do anything but good for her. Then there's the AFOs - she started wearing them and has been since the end of June. I had to take her back because the padding on the left one started to peel off a bit, and it gave her a blister right above her ankle. That's no fun!

The orthotic guy fixed the AFO, which was nice of him. We've been trying to get her used to wearing one on her right foot. She's used to the left one because she's had one for three years, but she doesn't like the right one very much. It stretches her muscles in new and uncomfortable ways, and she gets quite grumpy about it. We had gotten her up to two hours with it on, but then she would start crying uncontrollably until we took it off. Her PT suggested putting it on for an hour, taking it off for ten minutes, and then putting it back on for another hour. We have to get her used to it before school starts, because she has to wear it every day. She's still not liking it, but we're working on it!

Her PT has had some fun working with her. She needs to readjust how she walks with it and with not pointing her foot, but she's done well so far. She does not like standing with both on and tries to buckle her legs when we force her to stand. But it's doing the job of keeping her feet where they should be, and her PT says it has helped with her hips, which is nice. Like everything else with Mia, we're keeping an eye on her, but she seems to be adjusting to it. Anything to help her walk! It's amazing when she stands, because she's so tall. Too bad she can't do it more often.

So that was her busy week. Add to that our weekly visit to Little Gym, which she went to because she was home, and her usual therapy sessions, and she had a full five days. This week is less hectic, but she does have to go to the eye doctor to see if her prescription has changed (she's been pulling her glasses off quite a lot recently, and we don't know if it's the heat or the fact that she can't see as well), and maybe the heat won't be as oppressive (which is probably a pipe dream, but we can hope!) so we can go out to the mall. Wouldn't that be nice?


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