The Daughter Chronicles

Wednesday, July 06, 2005

Everything we do is wrong

It's been a weird week here at the Burgas homestead. Those of you with children know Norah's routine:

cry cry cry eat eat pee poop cry cry eat eat eat sleep sleep cry cry eat eat pee poop eat eat sleep

You get the idea.

So our focus is on Mia! (As it should be, in her world.) We have been trying to figure out what to do about her lack of appetite, and according to her, everything we do is wrong. We tried not giving her all of her medicine, even though her neurologist would be shocked, shocked! by the notion. This idea came to us after she puked last Wednesday before we fed her dinner. I mentioned that if we did that for too long, her neurologist would say he couldn't change her meds because we hadn't been giving it all to her so we couldn't know the exact effects. So we've been giving her the full meds and getting her to eat something at every meal, which isn't always fun. We also adopted the "Serenity Now!" option of feeding her - we give her some food, and if she eats it, fine, and if she doesn't, whatever. I have even allowed her to throw food on the floor, which drives Krys and, I'm sure, proponents of parental discipline into paroxysms of rage. Her choice of foods has dwindled to:

Gerber fruit stuff - bananas, banana strawberry, applesauce; some cereal (Kix, Tiger Power, Cheerios) - but that has become increasingly difficult to get her to eat; the occasional vegetable; salt and vinegar "chips" that look like French fries - these she loves. We used to buy them at Cost Plus, but they no longer stock them. Today we search for another place to purchase them! Of course, she'll eat pudding and sweet stuff, but those are only a reward for good eating. We haven't caved that far yet.

Her food intake seems to be enough to counter the queasy effects of the medicine, so that's okay. I have started tracking her seizures, something I should have done a long time ago, I know, but better late than never, I guess. We want to have ammunition to take to the doctor's next time we go in. Over the weekend her appetite got even worse, and the food-throwing became worse, and the overall eating experience got worse. She was more like a zombie than ever, and so we decided on Sunday to forgo her usual batch of melatonin, which we have been giving her for months to help her sleep. Well, that too was wrong. She slept for a little over an hour, and then was up for the rest of the afternoon. If we don't give it to her, she doesn't sleep, but if we give it to her, she sleeps for hours and is a zombie when we wake her up. Quite the conundrum.

On Monday we decided to give her half the dose of melatonin that we had been giving, meaning we now give her an eighth of a pill. It's hard cutting it, but it seems to work. We called her neurologist on Tuesday and told the nurse that we didn't see any improvement in her seizure activity and that it had to be possible to switch her medication. She told us that he would call us back, but as I've mentioned before, people suck, so he hasn't yet. I'm sure he will, but I might have to call him to "remind" him.

We also received the latest issue of Exceptional Parent magazine, in which is the first of a three-part series on seizures. Serendipity indeed. It explains about the kinds of seizures that exist and how to diagnose them. I won't bore you with the details, because we're not sure yet what kind of seizures Mia has. We're pretty sure they're tonic seizures, but we'll have to check with her neurologist.

I've mentioned this before, but it's kind of tough being a first-time parent, even though everyone gives you advice. It's a lot of trial and error. Add the brain injury on top of that, and we think raising Norah will be a breeze (yeah, right). So even though everything we do is wrong, we're still doing what we can. Mia will appreciate it some day. She better, is all I can say, or there will be trouble.


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