Yes, it's been a while - we've been quite busy. First we had to deal with Mia's g-tube and getting used to that, and then we went on vacation. Krys and I, that is, for the first time in over five years. We went to Key West on 26-31 January to celebrate my friend's 40th birthday, and we had a blast. So I've been doing other stuff. But I have updates!
Mia's g-tube experience is fine. On the weekend, we've managed to get her up to 711 milliliters of high-calorie, high-fiber stuff (we know because we can get three juice-box-sized containers in her, and each is 237 ml) into her, which is nice but only about half as much as she should. During the week, we've only been able to get about 350 ml in her, because we haven't been giving her the stuff through the g-tube at school. We've done this just to enlarge her stomach so she doesn't puke everything up. This week I trained the school staff to do it (they already know quite a lot, but they still need me to train them), and they're going to try to get 360 ml (180 twice a day) in her during the day. They don't need to use the pump to do that, because you can just put it into her tube and let gravity move it into her stomach. They just started, so I hope that this will help spread out the amount that goes into her through the day and help her gain weight. She hasn't gained a lot of weight in the past three weeks, but she hasn't lost any, either, and I know we have to start giving her more if she's going to gain weight. We'll see how that goes.
Meanwhile, we went to see her surgeon yesterday for her first check-up, and I learned some interesting stuff that might have been good to know before we took her home. The nurse asked us how much water she had in her bulb, and I didn't even know what the question meant. It turns out that the bulb at the end of the button that is in her stomach is filled with water, which inflates it and keeps it in her stomach. If the bulb breaks, it won't damage her at all, but the water will leak out and the button will fall out, which would suck because the hole would close up very quickly and if that happens, she needs to go into surgery. So they showed me how to check the water in her bulb, which was nice. They also told me that the red, viscous crap around the wound is "granulation," which happens because it is, after all, an open wound with a foreign object in it, so the doctor and nurses showed me how to try to get rid out that. They also told me what to do to put a new button in, which I might have to do occasionally. That would have been nice to know. I love that they let us leave the hospital without all this knowledge. Charming! Mia has to go back quite often in the first year, and it seems like they're going to change the button often, depending on whether she needs it or not. They said it depends on the kid - some kids' buttons last a long time, some don't. Some kids get a lot of irritation around the wound, and some don't. Mia doesn't have a lot of irritation, but it's there, and we're trying to make sure it doesn't get worse.
So that's Mia's g-tube news. But there's more!
Last week Mia got a new hand splint, which we've been waiting on for some time. Her old splint was fine, but we wanted to have one that turned her wrist a bit and stabilized her elbow, so the specialist worked on that for us. It's not perfect, but it's pretty keen. We can't turn her wrist too much because it would be stressing out her joints too much, but it's slightly tilted. The hand part and the arm part are separate so that her wrist is straight but not rigid, which gives her some flexibility but keeps it pretty straight. Meanwhile, the elbow part is an entire separate part that we can take off, so she can wear the hand part a lot but doesn't need the elbow part as much. We wanted to be able to lock the elbow so that it could support her when she's sitting in her chair, the orthotic guy could not find a lock small enough for a kid - you can do it for an adult, but not a child. So she has a gear on her elbow that can keep her arm from flexing beyond a certain point but allows her to straighten it. We hope that helps her move the wheel on her chair more easily. That would be nice.
She is surprisingly fine with the splint so far. She's wearing it for about 3-4 hours a day right now, but we're trying to get her up to pretty much all the time, because her doctor is worried about arthritis and we don't want that. She certainly doesn't like it, but the fact that her wrist isn't completely rigid, I think, is very nice for her. So here are some pictures of it!
Here's my adorable assistant holding the entire sucker.
Here she is wearing the monster:
You'll notice that the piece holding Mia's hand is a bit more solid and all-encompassing, which is nice.
This shows the gear that we can set to keep her arm from flexing. Too bad it's not a lock!
Finally, Norah is still awesome. Nothing too new to announce, except that she now has a Twitter account. Well, okay, not her, but I finally convinced Krys to set up a Twitter feed that Krys will update with Norah's fun bon mots. Krys used to post them on Facebook, but I told her it would be more fun if she was on Twitter. If you want to follow her (and why wouldn't you?), check it out here
. It's awesome.
So that's what's what with the kids these days. It's all groovy!