The Daughter Chronicles

Tuesday, March 31, 2009

Where's Mia going?

Apparently, our daughter is wasting away to nothing, so it's time to get aggressive! We visited the gastroenterologist last Friday, and the news was grim. She was weighed, and she tipped the scales at ... 35 pounds. To give you an idea about how distressing this is, she's 6 years 7 months old. Norah, at 3 years 9 months old, weighs 30 pounds. So Mia is rapidly fading away, and the doctor said it's time to take action!

We've been worried that there's something physically wrong with her, but the doctor didn't think that was the case. She said that bone surgery is extremely traumatic, and it's only been two months since she had it, so she's definitely not recovered completely yet. Anyone coming out of surgery loses weight, but Mia, unfortunately, doesn't have a lot of weight to lose, so it's worse with her. The doctor decided to stuff some calories into her and also try to get her regular (which we've been struggling with for years). She gave us some good laxative and some liquid suppositories (so she couldn't squeeze them out) so Mia could start pooping. Well, she had some good bowel movements on Friday and Saturday, but since then - nothing! Of course, when you're not eating a lot of solid foods, it's kind of hard to excrete it. She also hooked us up with a powder that's chock full o' calories to mix into her food as well as some high-calorie drinks to fatten her up a bit. I feel like the wicked witch living in the gingerbread house, trying to get Hansel and Gretel to pork up! So she's been drinking that, eating some stuff with the powder in it, and trying to get some solid foods into her too. Plus, the doctor suggested she drink more Gatorade or some sort of hydrating liquid (although I suppose we should call it "G" these days). She needs to be more hydrated, but it's hard enough getting her to finish her high-calorie drink and a drink with the laxative in it, plus she's not too fond of juice and water and such. Man, it's a pain having a kid who won't eat. Norah's appetite isn't that great these days, either, but at least she eats stuff (she's eating beef jerky right now, because she's awesome).

As I mentioned, Mia's appetite is a little better than it has been, so we're hoping that helps too. She's supposed to get weighed in a month and she has a follow-up appointment in two months. The doctor is trying to bulk her up, so the fact that she's being a pain about not eating solid foods is currently secondary. The doctor also said that if she's still not gaining weight in two months we have to start worrying about some sort of disease or other physical problem with her. I really think it's more psychological than anything, especially considering her surgery. But we'll see about that in a few months. Right now, it's all about packing on the pounds!

Wednesday, March 25, 2009

A (somewhat minor) breakthrough!

This morning I was trying to get Mia to eat. She was opening her mouth for Apple Jacks well enough, so that was an improvement. A few bites in, I asked her to take the spoon herself, and she did! She took a few spoonfuls by herself, which was nice. We hope this means she's getting her appetite back. She's eating a little bit more, but we have to keep making her feed herself. But it was good to see her actually eating something with a utensil. It's been a while.

Monday, March 23, 2009

So what's been going on?

It's been two weeks since I updated this blog, and yes, I suck. Mia was on spring break last week, so I was trying to have fun with both of them. Norah didn't have anything going on either, because the stuff she is involved in also took a break. So it was a week of doing very little, plus the temperature decided to spike into the 90s, so we couldn't even go outside a lot. It was boooorrrrrrrring.

Mia is back at school this week, so that's fun. She's going to visit a gastroenterologist on Friday so we can figure out what the heck is going on with her lack of eating. She's sucking down Pediasure and eating tiny amounts, so I'm not hugely concerned for her health, but we are concerned about her lack of appetite. It's very annoying.

We also got a new camera, so I'll have to post some pictures of the kids soon. They're still awfully adorable! Mia lost a front tooth recently (her third lost tooth, but first in the front), so she looks even cuter, if possible.

More soon!

Monday, March 09, 2009

Update on Mia

It's been six weeks since Mia's surgery, and she's slowly but (we hope) surely getting back into the swing of things. Last week we put her AFOs back on, and she was fine with it. She's been wearing them all day at school without incident. We also decided to put her vest back on, because her breathing was very shallow (steady but shallow) and all the good her vest had done seemed to have vanished. She was speaking very quietly and with less clarity than she had been, and we figured it was because her chest muscles had atrophied so much. She's been fine with the vest over the past week, and it's having a positive impact, as her breathing has become stronger.

She still has plenty of pain, though, which is probably not surprising. Her muscles are very tight, and any movement brings whimpers of pain. It's never been fun getting her AFOs on her feet, but in the past week, it's been even worse, as she hollers whenever we bend her knee and flex her foot. Her PT says that she's moving around and when she reaches a point that doesn't hurt as much, she locks up and then can't relax. Of course, then her muscles start to ache in that position, but then she can't move because she's locked up. It's a bit annoying for her when she sleeps, because it wakes her up. But we're stretching her out, trying to slowly work her muscles back to a state where she doesn't screech whenever we pick her up. The worst part is when we have to give her a bath, because that really makes her grumpy. Changing her diaper is getting a bit better, but it's still upsetting to both her and us when we have to move her around.

The biggest problem we're having with her is her eating, which is still atrocious. At school they're getting her to eat a bit, but she's still being a pain about it at home. I called a psychologist her speech therapist recommended but haven't heard back from yet. She doesn't seem to have any physical issues with eating, so we're forced to conclude that this is one of the few things she can control, so she's exercising it. It's very annoying, and we're worried about weight loss, but right now she still seems healthy. I don't know if the psychologist will be able to help (or even take the case), but we'll keep trying.

So that's where we are with Mia. She's doing well, but like everything else with her, she's going very slowly. In a few weeks she goes back to the doctor, and I imagine he'll say it's okay to start physical therapy again. Boy, won't that suck. You might be able to hear the screams!