Norah's latest grades

I've been writing a lot about Mia recently, but today it's all about Norah, who today had her parent-teacher conference. There's never been any issue with her behavior, and her grades are usually fine, but I can still brag occasionally about her, right? In her school, an 'A' is 94% and above, and Norah got all 'A's, which is nice. Her lowest grade was in Phonics, where she got a 95%. They're starting writing exclusively in cursive on Monday, so we'll see how that goes. They use the Spalding spelling test (for what that's worth), and she's spelling at a fourth grade level (she's in second grade). The school uses the McCall Crabbs reading comprehension, and she's reading at a sixth grade level. So that's cool. She went to a book sale a few weeks ago and she got a few old-school Nancy Drew books. She likes them, and while she doesn't know all the words, she gets the gist of them, which is nice. In the non-graded things, she got "outstanding" in penmanship, citizenship (basically, behavior), homework completed, and academic effort. That's because Norah is awesome!

I'm sure Mia will have some complicated medical issues soon enough, but for now, Norah's doing well in school. That's always nice!

A broken record?

I mentioned last time that I had taken Mia to the gastroenterologist and that she prescribed new formula that was supposed to go through her more quickly. It has fewer calories, but the doctor hoped that we could get it in her more often so that it would balance out. With a renewed purpose, we began!

And, yeah, that didn't work. The weekend we began it - 2-3 February - was okay, although we only were able to feed her twice on Saturday and thrice on Sunday. But she didn't puke and on the Sunday, we managed to get all her medication in her at their proper dosage in a long, long time. Then came the week. I took the new formula to school and told them to feed her twice, and I would try to feed her twice when she got home. When I did so on Monday, she threw up. It was still early and she was still fairly wide awake, so I fed her later and all was well. On Tuesday, she threw up again after I fed her for the third time. This time, she had occupational therapy, so by the time that was done, it was too late to try to feed her again. On Wednesday, the nurse called me and said that she threw up after both times they fed her. Charming. I didn't feed her when she got home, because she had both physical therapy and speech therapy, and after that, she was exhausted. On Thursday, as scheduled, I called the nurse.

I actually managed to talk to the nurse (which is never a given) and explained to her that the new formula wasn't really making a difference. She said she'd talk to the doctor and get back to me. On Friday, she called back and told me the doctor wanted to do a gastric scan (which she said she was going to order at Mia's appointment, but I guess she never got around to it), so the nurse put in an order for that. We tried to feed her three times that Sunday (the 10th), and she threw up again. I noticed, too, that her sleep cycle was pretty screwed up. She was waking up at night and not getting back to sleep very easily, and then, at school, they would let her nap in the early afternoon if she started to drift. I never had a problem with them letting her nap, but last week I decided that it probably wasn't the best idea. I told them to keep her awake by any means necessary at school, which I thought might help her fall asleep and stay asleep at night a bit better. Meanwhile, I simply stopped feeding her the formula when she got home and instead gave her solid food. Both things worked okay - she slept pretty well all week, and she actually ate some actual food, including some chicken at dinner one night and steak at dinner another night. I spoke to the nurse again on Thursday and asked when the hospital would be calling me to schedule the gastric scan, and she told me to give it until the middle of this week. So come Wednesday, I'm going to start trying to annoy people into scheduling the scan. I hope it won't come to that - it's always vexing when you realize that a business that supposedly is trying to help people doesn't care all that much about, you know, helping people.

Mia's problem remains puzzling. We can't feed her after about 3 in the afternoon, because even if - like yesterday - she's only been fed once, she still throws up if we feed her too late. I don't know what that's about, but I just think it's a problem with her stomach. It would be nice if we could get the scan scheduled so we can see what's what, because if she can't keep a lot of this formula down (it's the thinnest stuff they have), there's not much else we can do.

I promise to write something fun next time! Norah has a parent-teacher conference coming up, and those are always good news!

Mia's continuing health issues

January was kind of a dull month for the kids, although they did plenty of normal awesome stuff that they do all the time. Mia's still having health problems, though, and I wanted to wait until she saw her gastroenterologist today before writing about it. Visits to the doctor are always fun!

First I took her to her pediatrician in the middle of the month. We were a bit worried about early puberty, but her doctor told us there was nothing to worry about in that regard. That's nice. The more important visit was to the gastroenterologist. Since October, Mia has been having some worrisome vomiting problems, and I have been tracking it. In January she vomited 7 times, which means every 4-5 days, and that's way too much. It was messing her up, too - she was losing weight, because we couldn't feed her as much as she was throwing it up so much. We had been feeding her 3 boxes of formula a day, which was enough for her to get her weight up. Now we can't do more than 2, because if we try to get the third box in her, she throws up. If we gave her seizure medication, she threw that up, too. We have to give her the seizure medication when she has something in her stomach, too, which is annoying. So we stopped feeding her the third box - the people at school would give her 2, and then I would just try to get her to eat solid food when she got home. That's a fool's errand, though, and so her weight dropped. Plus, it's been dicey giving her the seizure medication, because some days she simply doesn't eat anything. This was leading to more seizures, which messed up her sleeping. So she was more tired, which helps lead to ... more vomiting! Yes, the cycle is quite fun, why do you ask?

I told the gastroenterologist that I wouldn't mind it one bit if we had to hospitalize her for a few days so that all her doctors could look at her in a controlled environment. As I've mentioned before, they can never get a good reading on her EEG because she doesn't fall asleep, but if she were in the hospital for the entire time, I'm sure she'd have a seizure at some point. Plus, she might throw up at some point, especially if they tried to get too much food in her. I told the doctor that it seemed like her stomach wasn't emptying, because occasionally she'll vomit when she hasn't had anything for many hours, and formula comes up. Your stomach should clear every 3-4 hours, so if it's been longer than that, something isn't working in her stomach. She ordered a test to track the path of food through her, but we haven't scheduled it yet. She also gave her new formula, which is supposed to empty out of her stomach more quickly. Mia was doing pretty well with her weight for much of last year, but she's back down to 49/50 pounds, which is significant when she should be 55 pounds or higher. So we're going to try the new formula this week, and if she doesn't puke, we're good to go! I still think it would be better to do the test to make sure everything is going through her at the correct rate. I suppose that's the next step.

It's very frustrating, but that's just life with Mia. Every so often, things will be going relatively well, and we should look out, because we know something crappy is coming soon! Her seizures do seem a bit better recently, so that's something. She's still pooping fairly well, so that's also something. But she really needs to gain weight. Again. Sigh. Rinse and repeat, really.