The Daughter Chronicles

Monday, April 18, 2011

Eight ought to be enough

Yes, 18 April has come around again, and while you might think I'd like to forget about this date (and I would), I also think it's important to acknowledge that, yes, on this day in 2003, the lives of everyone in the Burgas family (including the unborn Norah) changed forever, because that was the day I was rear-ended by a truck and my lovely daughter sustained her traumatic brain injury. The entire story is here, if you don't know it yet. As always, I like to write about any progress she's made this year, plus I have a big announcement, so I guess I'll write about that, too.

This past year Mia finally recovered pretty much fully from her hip surgery, which she had in January 2009. The year following it was pretty bad, as she struggled to recover and lost any inclination to eat (which of course continues to this day, as regular readers know), but this past year she's finally reached a point where her hips didn't hurt and the bones are where they're supposed to be. Her physical therapist has been very happy with her progress, too. After she was "fully recovered," she still didn't want to walk a lot, but he perservered (as he does), and in the past few months, she's gotten much better at getting around. He used to have to kneel behind her and hold onto her hips while she moved her feet, but in the past few months, he's been able to stop doing that and now he and I stand on either side of her, holding her arms, and she can move her feet by herself. She's still working on that - she tends to list a lot, veer to the left, and she doesn't lift her left leg as high off the ground as she needs to - but it's still a big step (so to speak) along the way. We're hoping that she keeps working at this, gains more strength, and learns more balance. Her balance is still a big problem, so until we get that figured out, she's not going to be doing a lot of walking on her own. But at least she's figured out that moving her feet is a good thing!

Meanwhile, she's learning a lot. This year in school has been a good one for her education (and not so good in other ways, but I'll get to that). We're not sure why - she's not as uncomfortable from the hip surgery, I know, which has hampered her the past two years in school, and I think because she's able to move more, she's more curious about the world. It could also just be that she's learning more so she's able to interact more with the people around her, which makes her want to learn more - I'm not positive her brain works like that, recognizing cause and effect, but it also might be a more unconscious thing (it's very hard, in case you haven't figured out, to grasp exactly what her brain is doing inside that noggin of hers). Either way, she's doing much better at school. She's using the computer to spell words (which she enjoys) and she's moving beyond simple consonant-vowel-consonant words into a bit more difficult words ("of," for instance, which doesn't look difficult until you realize that the "f" doesn't make an typical "f" sound). She's reading a bit more, as she's able to sound things out better. She's also using a lot more sentences, not only complete ones but ones that are correct in context. We've also been hearing a lot more sentences that are new instead of ones she's memorized by rote use. One of her favorite sentences involves telling people how much she likes their shirt or earrings or necklace or buttons - yes, it's a rote usage, but it's still very cute. Her vocabulary and understanding is increasing, too, which is nice. Her teachers are still having lots of trouble with her fine motor control - she's still signing her name really big, for instance, because she can't get control over her hand to keep it small - but it's something to work on for the future. For the most part, her schooling is going very well, even though she keeps getting new teachers each year who have to learn all about her skill levels and behavioral quirks (she still pinches too much, for instance). Next year she's getting yet another new teacher, as the school separates the special ed. kids into grades 1-3 and 4-6, and she's moving up to fourth grade. So the learning process begins anew!

The biggest issue over the past year has been her weight, which has been a pain since her surgery. We thought that once her hips were fully healed she would start eating again, but she didn't. We took her to a gastro-enterologist and a child psychologist, and we started giving her a high-calorie drink, and by the end of 2010, she had gotten up to 47 pounds (at 48 inches long). She kept growing (in early March she was 50 inches), but for some reason she stopped drinking the high-calorie drink. Now, it doesn't taste good, that's for sure. But we tried putting chocolate syrup in it and we tried giving her different high-calorie stuff, and nothing worked. So she started dropping weight again. In early March she was down to slightly less than 44 pounds. We explored the possibility of a g-tube, which would deposit liquids directly into her stomach, but we're wary about more surgery and we're also convinced this is a psychological problem. I've always thought that Mia doesn't or does eat based on the fact that it's almost the only thing in her life she can control, so if we want her to eat, she gains some measure of power by not eating. She doesn't understand the consequences of not eating, so that has no effect on her. As she lost weight, we tried various motivational techniques (not letting her watch television, not letting her read with Mommy), but nothing worked. I've mentioned this before, but Mia is extremely stubborn and extremely patient. She simply doesn't care if you sit her in front of the television and tell her she can't watch until she drinks her milk. She'll sit there for hours, telling you every so often that she wants to watch but not drinking and not getting too bent out of shape that you're not turning the television on. It's annoying, as you might expect.

So we began to think about other options. One thing we decided to try was sending her to an inpatient clinic, where they could concentrate on her for long stretches of time and come up with strategies we might not have considered. While we were researching that, I started giving her the high-calorie milk through a syringe, and she was fine with that (I joked that she was a Roman emperor in a past life, because she's perfectly happy to eat as long as someone else puts the food in her mouth). So for a month or so her teachers and I have been giving her the drink that way, and it's really starting to bother her teachers, I know. She behaves far worse for them than she does for me, and I know I'm frustrated about it, so I can imagine what they're going through. We found a few clinics, and finally decided to try one out: Good Shepherd Rehabilition in Bethlehem, PA. Part of the reason we picked it was because, all things being equal (we didn't see too many differences between the ones around the country that we could find), it's pretty close to where my parents live. I'm going to go with her and stay in Pennsylvania, so the fact that I could live in my parents' house was a nice bonus. Krys happened to be in Pennsylvania a few weeks ago, and she went by the clinic. She said it was very new, very nice, and didn't have a lot of kids but had a lot of nurses, which means Mia won't get lost in the crowd. She has PT and OT every day and speech therapy (by which I assume they mean feeding therapy, although I imagine speech will be part of it) three times a day. The nurse told Krys it's a minimum of four weeks for the program, and I assume Mia will be there more like 6-8 weeks. But we'll see.

So we're flying out on the 30th and she'll go into the clinic on Monday 2 May. She's going to miss the last month of school, but I'd rather she miss the last month than the first month, and as we're going to San Diego in late July she'd have to go now or after that, and I really didn't want to wait. Her teacher has provided the clinic with a basic curriculum, because they have a teacher from the local school district who comes in and works with the kids, so I hope Mia won't fall too far behind in her work. I'm going to stay in the area - I know they're going to want to train me in whatever strategies they discover work, and I imagine there will be other things I can do. Krys and Norah are going to come for a week or so in early June, so at least they won't go too long without seeing Mia (and me, of course, but who cares about me, really?). We really hope this works, because the next step is a g-tube, and no one wants that.

So that's Mia's year plus our big announcement. She really has made a lot of progress this past year, which is why the past three months and the return of her eating issues is so frustrating. She remains a wonderfully happy child, and it's so nice that she's getting more and more able to interact with the people around her. The challenges never go away, of course, and just when we conquer one of them, a new one or two seems to rise up, but Mia usually makes it worth it. I mean, I can live without the pinching, but I love when she talks to us or when she manages to walk across the floor or when she plays with Norah (as rare as that is). As always, I appreciate everyone for reading, and I hope this next year is even better because she finally learns that she really ought to eat more. Wouldn't that be nice?

In case you're dying to read the other yearly recaps, here they are: 2005, 2006, 2007, 2008, 2009, and 2010. We just keep trucking along!


  • Very nice post - It IS hard figuring the kid's out. I work for school bus and only have 'em for a couple a day, but I mostly have special Ed kids, and you have to create an environment where - If they don't exactly THRIVE for twenty minutes - they'll be quiet enough so you can drive.

    By Blogger MarkAndrew, at 29/4/11 10:24 PM  

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