The Daughter Chronicles

Tuesday, August 30, 2011

Number nine, number nine ...

Hey! it's Mia's ninth birthday today! How about that?

I confess, I forgot this morning that it was Mia's birthday. Usually I'm pretty good at keeping track of the date, but for some reason I forgot it was the 30th today. So I suck. It's not like she cares.

Mia at nine is, of course, a bit different than most kids at nine. Her "mental" age is far less than nine, so occasionally it's easy to forget that she is actually that old. But yes, nine years ago today she entered the world and changed our lives forever, in more ways than one. I remember the days leading up to her birth very well, because I had lost my first teaching job in June (with my wife very pregnant, mind you) and I wasn't sure I'd get another one. I had just started another a few weeks earlier (luckily) and was still getting the hang of it, and now I had to get the hang of being a dad. As I've written before, being a high school teacher is great training for being a dad, so being both at the same time was quite the experience. Mia was born on her due date, mainly because the doctor decided it was time, so while Krys didn't have a C-section, they did induce labor. She wasn't in labor all that long, which was nice for her. I still wouldn't want to go through that, I'll tell you that much.

So Mia is nine. Considering that she probably ought to be dead, we'll take it.

(This is her first day on this planet. Look how ... well, like a baby she looks!)

Tuesday, August 23, 2011

Various Mia news

It's time for some updates about Mia. These are always fun, right?

As per usual, we're still having problems with her eating. On the first day of school she visited her gastroenterologist, who prescribed Miralax for her constipation. We've been on and off with laxatives for years, mainly because they work strangely on Mia. We'll give her the recommended dosage for a bit, and it won't work. Then, a week or even two later, she'll have several days where she poops very often, with the poop becoming more and more mushy. It's very unpleasant for everyone concerned, because as the poop becomes mushy, we don't know she's pooping (when it's harder, we can tell), so she'll sit with it for a while and it gets up in every crevice (yuck) and then she's in danger of a urinary tract infection. Plus, cleaning her up so often makes the whole area very sensitive. The doctor suggested a different dosage and less at a time, which ... worked the same way. For the past few days we've been dealing with very yucky poops, which dehydrates her and wears her out. It's SCIENCE!!!! So that sucks.

According to her teachers, she's been doing well in school, which is nice. She's not being as evil as she can be, and they're trying to keep her in the regular ed. class for some time, as she seems to enjoy the other kids. We'll see how long that lasts. I'm planning on going in one of these days and following her around (discreetly, although Mia always spots me) to see what her day is like.

The biggest issues we're having these days (well, the eating thing is the biggest issue, but that's a constant, so it blends into background noise quite often) is her stiffness. Her high muscle tone means she's always fairly stiff, but recently it's gotten worse, and we're not sure why. Her PT can't figure it out, because whenever he stretches her, it only works for a very short period of time before she reverts. It's very frustrating, because when we're trying to change her, for instance, she refuses to straighten her left leg and it makes everything a lot harder, plus it seems to bother her more. It also makes walking a lot harder, because she doesn't want to straighten her left leg to take steps. We've dealt with this for years, but over the past month or so, it's become much tighter and more difficult to stretch the muscle. In the past we've given her Botox, but the efficacy of that seems to have diminished and I've never felt too comfortable doing it, mainly because it's not a long-term solution. I wanted to talk to her neurosurgeon about it, so today I went in for an appointment. Before we did that, however, we took her to a new therapist on Sunday.

This therapist was recommended by her gastroenterologist, as the therapist's son saw the doctor some years ago and that's how they know each other. The therapist practices the Anat Baniel method (which I guess is a subset of the Feldenkrais method). I've only read a little about this kind of therapy, but it involves working with the bones and teaching the body how to move, and it's very low-key - they don't believe in splints or orthotics or anything like that. Mia went to one session and we could see a bit of a difference - I'm not ready to proclaim it a miracle cure or anything, but she was definitely a bit looser and has remained so. We're willing to try almost anything, especially something that's non-invasive, so I told the therapist we'd be back. Apparently we're somewhat lucky that there's a therapist so close to our home (she's on the west side of Phoenix, so she's about 45 minutes away) - they're few and far between, and in some of the accounts I've read, people have driven 3 or more hours to see one.

So this morning I went to see her neurosurgeon, and of course he recommended Botox. I asked him about baclofen, which she's taken before (and didn't like), but he said he only likes to prescribe that when the tone is high all over, and as her right side is fairly loose, he doesn't think it would be a great idea. He also said there's a new physiatrist at the hospital and he wants her to take a look at Mia. We'll see what she has to say. As I mentioned, I'm not really sure I want to give her Botox, mainly because I don't think it will work enough to make it worth the while.

I'm not sure how this Anat Baniel practitioner is going to fly with Mia's PT. She already has a hippotherapist who has slightly different ideas about dealing with her than her home PT, and now I've added another voice to the chorus. I do know that despite years of therapy, she's not really getting much better - she can do a lot more than she used to, of course, but she's reached a plateau as far as her walking it concerned, and I don't know what to do about it. Her PT even mentioned that this cycle of high muscle tone that seems to come around every so often might preclude her from ever walking, which is very frustrating. I don't think Mia will ever walk on her own, but I do think she's capable of walking with some assistance in the future, so anything we can do now to help that along is something we will try. We'd be stupid not to, I think.

So that's some of what's going on with Mia these days. I know - so exciting, right? I mean, my good readers probably thought they could live happy, healthy lives without ever knowing anything about Anat Baniel. This is why you read - for the KNOWLEDGE!!!!!

Sunday, August 14, 2011

Back to school!

Mia and Norah started school this past Wednesday, 10 August, and I'm once again a happy camper. Six hours during the day with no kids? Yeah, I'll take that. Especially because I have a lot to do over the next few months.

Norah is now in first grade (tempus fugit and all that), and she's doing fine so far. Her kindergarten class was split up a bit, so two of her best friends from last year are in a different classroom, but as they're not allowed to socialize in class it doesn't really matter. She still hangs out with them at recess and lunch, so she's happy. Her homework is a bit harder and lengthier this year, unsurprisingly, so we'll see how she does with that. Last year I volunteered to work in her class every other Monday, but this year the volunteering is either in the afternoon (right about when Mia is coming home) or on Friday morning, when I'm taking Mia to hippotherapy. So I'm not doing that this year. Oh well. We have to volunteer for other stuff around the school, so I'm certainly not shirking my duties, but I did like hanging out in the class and getting to know the kids a bit.

Mia's situation is a bit more annoying, as it always is. The school is experimenting with mainstreaming the special education kids, which is a disaster waiting to happen, if you ask me. I don't have a problem with trying to get the special ed. kids into more situations where they can interact with regular ed. kids, but I also think it's a mistake to try to get kids like Mia into regular ed. classrooms, because she's so far behind regular fourth-graders that it's just silly. Plus, her behavior, while not terrible, is not very appropriate for a large classroom. We've been fretting about this all summer, and last Tuesday, we had an IEP meeting to discuss getting her to eat at school, and her "mainstreaming" was a topic of conversation, as well. The principal had already told me that she was not a good candidate for mainstreaming, which we already knew, but on Tuesday, they said they were going to try her in the regular ed. class. We spoke to the special ed. teacher, and we told her that she could pull Mia out of the regular ed. class as soon as possible - we're under no illusions about what she can accomplish in the regular ed. class.

Part of the problem is that Mia learns quite a bit from her peers, and if she's in a regular ed. class, they're too far ahead of her for her. When she's in a self-contained special ed. class with kids who are higher-functioning than she is but not too far ahead of her, she learns from them fairly well. Now those kids are being mainstreamed, and if she goes into a self-contained class, she'll probably be one of the higher-functioning kids, and therefore have no one to model from. On the other hand, if she stays in the regular ed. class, she'll misbehave, from screeching (usually happily) in the middle of class or pinching people randomly. So it's a conundrum. And, because she won't work independently, the teacher has to spend more time with her, and in a regular ed. class, that just won't happen, and her aide will end up teaching her a lot. Her aide is a very nice lady, but she's not a teacher.

It's only been three days, so we're not sure how it's going to play out. In a few weeks I think I will have to go in and observe her for a while and see what they're doing with her. As we always tell her teachers, we know her educational paths are limited, but we also know she can learn, so we want to give her the optimal environment for that. So far she's enjoying the new school year and she's eating fairly well. We'll see how she's doing in a week or two.

Despite eating fairly well at school, she's still nowhere near the amount of calories she needs to function well. We went to the gastroenterologist on Wednesday and she weighed in at 47 pounds, which is better but not great. I fear that a g-tube is in her future, but that's a post for another day!

For now, I'm just glad they're back at school, especially Mia. She enjoys it a lot, and they have a lot more options for her in terms of activities than I do. I just hope we can figure out what to do with her!