The Daughter Chronicles

Sunday, January 01, 2012

2011 wasn't very good; maybe 2012 will be better!

I figured out that Mia had four good months this past year. The first four were terrible - after gaining some weight at the end of 2010, she simply decided to stop eating a few days into the new year, and this lasted through April. Then she went to the rehab clinic in Pennsylvania, and she got better. Her eating got better, but then in August her muscle tone started to get worse and worse, to the point where she can't stand up anymore even though in July she was walking (with help, of course, but she knew what to do and her legs were straight). Even though her tone was getting worse, she was still eating, until November, when she stopped eating again. So she wasn't able to stretch her legs AND she was losing weight. Fun times!

So 2011 wasn't that good. We're taking steps to remedy it in 2012. On 13 January she's getting a G-tube installed in her stomach to help with her eating issues. We've basically had enough of fighting her, and the tube will alleviate some of that. Her gastroenterologist told us that we could still feed her by mouth and this would just pick up the slack, so we'll try that. The frustrating thing is that there's no reason why she can't eat - she just doesn't. We really hope that we can get her weight up to something respectable, because we think it affects so much else in her life - she's so tired a lot, and she doesn't work at therapy as well as she could, and we think it's because she has very little energy. Stay tuned - I'll be writing more about the G-tube soon enough.

Meanwhile, on 20 January she'll be getting a new splint for her hand. This will help keep her wrist straight so that she doesn't develop arthritis in her wrist. Fun! The orthotic guy who has designed all her splints thinks he can make a very good one, something that goes past her elbow so, if we want to, we can lock her elbow wherever we want it. This is handy because when she sits in her wheelchair, she still tries to lean to the left. If we can put her splint on and lock her elbow at a 90-degree angle, she'll be forced to sit up. She eats much better when she sits up, too. It will also help with moving her chair - we can lock it so that her arm can't bend past a certain point, and then she can use it to move the left wheel of her chair. We hope.

We're still thinking about options for her high tone. She's doing pretty well on her baclofen, which relaxes her muscles, but it's not relaxing them as much as we'd like. We're probably going to have to surgically remove some of her muscles in her legs, because they're all pulling too hard and removing one will ease the pull. Plus, we're probably going to have to put her legs (or at least her left leg) in a big splint that will keep it straight. When we pick up her wrist splint on the 20th, I'm going to talk to the orthotic guy about that. We'll need something that we can put her in when her legs are bent and that will push her legs straight. It's extremely difficult right now to stretch her out, believe you me. Having a splint to help would be very nice.

So we're trying different things. If she doesn't get her legs straight fairly soon, she'll suffer a contracture, which means the muscle will be permanently short and it will be impossible for her to straighten her leg. Nobody wants that! Plus, we don't want her to, you know, starve herself to death. So we're hoping we start 2012 on a better note than these past few months, as they haven't been fun. We'd love to have a healthy and strong daughter as the year progresses!


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