The Daughter Chronicles

Sunday, October 30, 2011

Mia's busy month

A few months ago, Mia started having more trouble with her left leg. (I wrote about this already, but I'm going to summarize a bit now, because it's been a while.) She's always had issues with it, as it's the one with the greater amount of tone, but she was getting better at stretching it and walking. In August, however, she started to keep it flexed, and when she lay in her bed, she would pull both legs up to her chest and refuse to straighten them. We can still get her right leg straight, but eventually her left leg refused to straighten at all. This causes several problems, as you can imagine - getting her changed and dressed is a huge pain in the butt - but mostly, it meant she couldn't do physical therapy. Her PT had been working on her walking, but when we stood her up, she wouldn't even put her left leg on the ground. So for the past 4-6 weeks or so, he's been putting her on the floor and trying to stretch her. It's been slow going, to say the least.

We wanted to know what was going on - why did this happen rather suddenly? We visited her neurosurgeon, who didn't really give us much information. He did suggest we visit the physiatrist at Phoenix Children's Hospital. What's a physiatrist? I'm glad you asked! I mentioned back in August when I wrote about her leg that we were going to see the physiatrist. That turned out to be a lot harder than I thought it would be. The physiatrist is new to the hospital, so she wasn't contracted with insurance yet. Finally, I told the person who makes her appointments that I didn't really care about the insurance, I just wanted to see her and would pay privately if I had to. So we finally got an appointment to see her two weeks ago. Sheesh. She thought that Mia is going through a growth spurt. Kids between 9 and 12 grow quickly, and if that's happening to Mia, it's very possible that her bones are growing too fast for her muscles to keep up. The tone in her muscles has already caused the problems with her hips, which we had to get corrected through surgery, and so it's not out of the realm of possibility. The doctor was very concerned that Mia wasn't getting stretched enough. I told her I would be happy to stretch her, except for the fact that I couldn't actually straighten her leg. I asked her about giving Mia Botox, and she said she had too many muscles to target, so it might not be effective. She finally prescribed baclofen, which I had discussed with her neurosurgeon. He was reluctant to prescribe it because it works on the entire neurological system, so her normal-tone muscles would relax as well as her high-tone muscles, which we don't want. But we're trying to find a nice balance so that the higher-tone muscles relax without messing the other muscles. Mia took it for a while in 2008, but it messed with her stomach and made her sleepy. We're hoping that her bigger size and better eating this time around will help her with the side effects. That would be nice. She's working her way up to a full dose (3 pills a day), and so far, she seems to be handling it pretty well. One of the side effects is constipation, but that hasn't happened yet (considering her history with constipation, that's a good thing), and it hasn't seemed to mess with her appetite yet. Her leg seems to be a tiny bit more relaxed, but she has a while to go so far. The physiatrist said that she's worried about stretching the muscles because there's a big chance of arthritis and other complications by the time she's 15 or so, and now is the time to make sure that doesn't happen.

Meanwhile, I took Mia to the guy who made her ankle-foot orthotics in order to get her measured for a new left arm splint. The one she has is pretty good, but we need a new one (for which reason I'll get to below). He's going to fix her with one that goes up beyond her elbow and which we can set (it has gears) so she can't flex it past a certain point. If she stretches her left arm, it will let her, but if she tries to pull it back, we can stop it. This will, of course, keep her arm stretched. He's also going to make it so her hand/wrist is rotated 90 degrees relative to her arm, so that her hand is locked in that position (as if she was about to shake someone's hand, to help visualization). This is better for her than just keeping her hand and wrist in a straight line with her arm. Who knew? He had to get a prescription from her orthotic surgeon for this, but of course, it's three weeks later and he hasn't heard back from him yet. Of course.

The reason she needs a new splint is because she's getting a new wheelchair. The new splint will help keep her arm straight so she can move the left wheel of the chair. She's had a loaner chair since the beginning of the year, because the one we own doesn't let her transfer from it to a chair (it's a bit higher off the ground than a "traditional" wheelchair) and her PT at school wanted to work on that. I was waiting until she got back from Pennsylvania before ordering a new one, but in September we got her measured for a nice new one. The guy whose company was ordering it told me he could get it in 2-3 weeks if I didn't go through insurance. HA! I told him I had arranged for the money to be available because I wasn't sure if the insurance would pay for it, so that was no problem. Well, here it is, almost November, and Mia doesn't have her wheelchair yet. First, I called the insurance and asked if they would pay for it, and they said they would. I asked if I could pay for it up front and they would reimburse me, and they said they would. Well, the company who's ordering it for us took their time actually ordering it, and I'm not sure why. I think they were submitting it to the insurance, but why wouldn't they submit it AND order it, especially because I paid for half of it and said I would happily pay for the entire thing? Beats me. A few weeks ago the woman in charge of Mia's account told me they had shipped the chair. Yay! She said they shipped it on 7 October. On 20 October I called and asked if she knew how long it would take. She told me they shipped it that day, and then said they ordered it on 7 October. I didn't get too angry (it wouldn't do any good), but I know she said they shipped it, not that they ordered it. The two words don't sound anything alike, after all.

According to the woman, shipping it on 20 October meant it would get here on Monday the 24th. It didn't. I called on Tuesday and Wednesday, and finally on Wednesday afternoon the woman called me back. She said they thought it had shipped and then she saw an e-mail from the actual vendor, saying they had questions about some of the design specifications. She told her boss that I was calling and they really needed to get this done, and she claimed they had figured everything out and the vendor would actually ship it on Thursday, and they hoped it would be here on Halloween. You can bet I'll be calling on Tuesday if it hasn't arrived yet. I wasn't particularly angry about the hold-up, because I understand that things happen, but it always bugs me when people don't keep me informed - I just want to know what's going on. It's not too hard, people!

I'll write more about her wheelchair when it actually arrives, but we did get a letter from the insurance company telling us that some of the chair wouldn't be covered. They aren't going to cover the lighter wheels because they're all fancy. Now, Mia can move her chair, and we're trying to make it weigh as little as possible, hence the lighter wheels. It was just a letter, so we're still waiting to see what happens, but we find it humorous that six months ago they told us they weren't going to cover her physical therapy anymore (we've appealed that) because it wasn't "medically necessary," implying that she's too capable for PT, but when we wanted to get her a chair that she move more easily, their letter implies that she isn't able to move it by herself, so what's the point? So is she too capable or not capable enough? Insurance companies make my head hurt, and I used to work for one!

We're really hoping the medicine works, because we want her to be able to continue working with her PT. We're also hoping the wheelchair helps her become a bit more independent. She has an appointment with her orthotic surgeon in November to get an X-ray to see if her bones are growing, and she's also going back to see her gastroenterologist to check out her weight. She does seem to be gaining weight pretty well, which is very nice. We'll take it.

So that's Mia's busy month. It appears November might be just as busy. Fun!

Wednesday, October 12, 2011

Norah's snobby liberal education continues!

Being the good liberal jerks we are, Krys and I think it would be groovy for Norah to learn artistic stuff, so we asked her if she wanted to take piano lessons this year. (Obviously, I'm joking - if she wants to be all scientific like a weirdo, we'd be happy with that, too.) She said she would, so for six weeks, she took lessons one day a week before school. The teacher told us she needs six students and she only had four in the class that just ended, so the next one is in jeopardy, but we're not going to worry about that right now. Norah seemed to enjoy it (I say seemed because Norah is odd in some ways, including not acting very enthusiastic about things she claims she really likes while she's not engaged in them - while she's doing them, she seems to love them), and I would love it if she wanted to continue. We'll see, though. What's important right now is that she gave a "recital" after six weeks, and I was there with a video camera! She played "Twinkle, Twinkle, Little Star" and "London Bridge," and naturally she rocked! Okay, maybe not, but she was only taking lessons for six weeks! You'll notice a few things in this video: One, she looks absolutely miserable. I think she was a bit scared of performing in front of people, because I did ask her if she enjoyed it, and she said yes. I hope that she understands that she can tell me she doesn't like it if she really doesn't like it - I don't think I'm that much of a tyrant! Two, she has some issues with playing with both hands at the same time. Apparently this is really hard to learn, according to the teacher. It's one of those things that, as an adult, it comes so naturally that I, at least, have forgotten if it was difficult for me when I took piano lessons. Maybe it was. It's fascinating, though, and it's one small reason why I think it would be good for Norah to take lessons - playing an instrument, like tying shoes, is about more than the actual outcome. Anyway, enjoy her performance. I do hope there will be more of them!