The Daughter Chronicles

Monday, October 18, 2010

Good medical news about Mia? Uncanny!

Yes, it's true - we have some good news about Mia in the medical field, which doesn't happen that often. Huzzah!

Last Monday we all went to see a child psychologist (Krys had off from work as it was a bank holiday). After she talked to us both with and without Mia, she decided that we could try a few strategies, none of which were all that novel, to get her to eat more. The one we thought would work is giving Mia a set time limit (20-30 minutes) to finish a box of the high-calorie drink we give her. She can easily finish one in that time (the box is the size of your typical juice box), and if we give her one in the morning, one in the early afternoon, and one in the late afternoon/evening (plus whatever she eats in the interim), she'll get a good amount of calories. The doctor said that's a sound strategy, and we may or may not try it. Right now, we're concentrating on our other strategy, which is making sure she has access to food pretty much all the time. This is most important at school, where they finally hired another aide, so the aide they hired to help Mia can do it all the time. They also got a small table to keep next to her, so that she always has food right there. Her aide says it's helping a bit, but we'll keep an eye on her, because if it doesn't work, we'll start with the time limit.

The doctor also prescribed some medication for her. The first one she said we should try is mirtazapine (Remeron), an anti-depressant. It stimulates the appetite, as well. We've been giving it to her for a week, and it seems to have helped quite well. It also makes her drowsy, which is kind of annoying. It wasn't too bad last week, because it was Fall Break and so she didn't have to get up for school, but it was a pain this morning getting her up. Her speech therapist was on Remeron several years ago and she says the drowsiness doesn't last, which would be nice. The doctor said the next med she would try is Zoloft and then, as a last resort, an anti-psychotic they use for anorexia, but I don't think she'll need those. She seems to have gotten a bigger appetite already (and the doctor said it should work right away, so we don't think it's just an anomaly). Today at school she drank two complete boxes of the high-calorie milk, which is superb, so let's hope that continues.

On Wednesday last week we took her into the gastroenterologist's office to weigh her, as it had been about a month since she had seen the doctor and the doctor wanted a weight check. She was 43 pounds, meaning she's gained a little over two pounds in about five weeks. The doctor was perfectly satisfied with that gain, so she's going back in a month for another weigh-in. No, 43 pounds isn't great (as Friend of the Blog Roger points out, his daughter is two inches taller than Mia and outweighs her by almost 30 pounds), but it's progress. Norah, by the way, is 45 inches tall (three inches shorter than Mia), 40 pounds, and almost three years younger than her sister. So Mia has a way to go, but she's on her way ... we hope.

So there's some fairly decent news about Mia's medical problems. We'll take them in as little increments as they want to come!

Sunday, October 10, 2010

Norah: Martial artist!

The other day a couple of flyers came home in Norah's backpack. The school is offering a couple of after-school programs. One is a drawing class and the other is a karate class. We've discussed them both with Norah before, and we asked her again which one she wanted to take, making sure she knew that "neither" was an option. She looked them over and pointed at the drawing class flyer. We asked, "The drawing one, right? Not the karate class?" She said, rather casually,

"I already know karate."

She then extended her arm with the hand flat, pseudo-Nazi salute style, and kicked a bit with her leg while saying, "Hi-ya!" So that was that. She DOES already know karate! Drawing classes it is!

(We don't care which she takes or even if she does. She enjoys drawing a lot, and we know martial arts would improve her confidence, so whichever she wants is fine with us. We didn't expect that reason, though. That's because Norah rocks!)

Tuesday, October 05, 2010

Yet more stuff about Mia's eating (or lack thereof)

We had a meeting with Mia's teachers and the school nurse last week about her eating issues. It's not the first time and it's not the last time we'll do this sort of thing, but that's just life with Mia, isn't it?

As I wrote recently, she weighs not quite 41 pounds at she's 4 feet tall. That ain't good. So we've been trying to get her to eat more, which is what we've been doing for several years. They've been telling us that she's not eating well, and all throughout September, they kept track of the calories she consumed, and she never broke 500. As she should probably have 1400-1600 a day, that's a problem. So we had a meeting to come up with some strategies to get more food in her.

The biggest problem with the school is the lack of aides. Mia's classroom, with ten special needs kids in it, has a teacher and two aides in it. According to her IEP, Mia should have an aide with her at all times. With three teachers in the class, that's not completely possible all the time. I was giving them a month to hire another aide, and now that it's October, we're bugging them about it. The TBI specialist for Mesa schools told me that they hired someone and they just need to clear her fingerprints, so that's good news. The reason Mia needs an aide is because she has some issues staying focused (surprise, surprise). When it comes to eating, she needs someone to bug her about it. And for that, she needs her own aide!

What they have been doing with her is bringing the food and drink to her and offering it to her. That's just not going to work, as Mia is, quite frankly, a pain in the butt. So she just tells them she doesn't want any, and they don't push it. So we told them they need to do one of two things:

1. Get a table to put next to her and put her food and drink on it. When she's at home, she sits in her chair with her milk on a tray, and she usually does pretty well at drinking it. If you keep the milk next to her, she'll often drink it herself, and it's also much easier to tell her to pick it up and drink it.

2. Get her to drink the milk (which has 355 calories in one small box, the size of a juice box) in a short period of time, like 30 minutes or less. She can do it, although she doesn't like to do it. If they can do that twice a day, she doesn't have to do a lot of eating the rest of the day, and anything else they can get in her is gravy. It will probably be a bit more stressful than option 1, but it also will get it out of the way much sooner.

Now, the thing she needs is a tough aide. The woman who has been assigned to her is a sweet woman, and I told her a few times on Friday that she needs to be tougher (I did it as nicely as possible, of course). Mia doesn't respond well to pleading, as I believe most kids don't. She needs someone to tell her what to do in a forceful voice (without yelling, of course, because more than most kids, she goes to pieces pretty quickly if you yell at her and it's very hard for her to calm down), and her aide needs to work on that. I hope she does.

We discussed some other things, like how she needs to stand in her stander more (to stretch her out a bit and give gravity a chance to work on her bowels - we think part of why she doesn't eat too well is because she's constipated and doesn't feel good because she needs to get the poop out), but it was mostly about her eating habits. It was a pretty good meeting - we've always had good relationships with her teachers and school therapists - and we're hoping it helps. We do have an appointment with a child psychologist next week, and there are other options with behavioral therapists before we have to put a G-tube in her stomach, so we'll see where it goes. I really don't want to put a G-tube in her. That would suck. But we live in hope, don't we?

Monday, October 04, 2010

Anatomy of Norah's artwork!

Here is Norah's latest artistic masterpieces:

This is our family. Some things of note:

1. Mia's wheelchair looks like a tank. She would kick so much ass if her wheelchair was built like Norah draws it.

2. We're all wearing winter clothing. Norah, who has lived in Arizona all her life, is obsessed with winter. We're going to Flagstaff over Christmas break, and she's extremely excited that she gets to wear winter clothes and play in the snow.

3. I have no idea what is up with our hands. We're all wearing yellow gloves, apparently, but I don't know why they're so huge.

4. Norah is in the center, and you'll notice that Mia, Mommy, and Daddy are all gazing at her adoringly. She's the only one with eyelashes, too, because that just makes her more adorable. This is how Norah sees the world, I suppose. I suspect this is how many kids see the world.

Norah loves drawing, and it's always fun to decipher what she's drawing. She's quite the subtle little artist!