| By: Kristen |
| Date/Time: 3/10/2005 12:18:26 AM |
Update:
Havalah continues to hang in there lab wise, not improoving much, not getting worse. She is still status 7, if she had a PELD it generally falls between 6 and 9. So at her GI appt on tuesday her doctor was pretty positive and in general seems to think she is doing well (she is finally in the 25% for weight and higher than that for height) and her labs have been about the same for a year now, so he thinks it could potentially be a year or two before she needs a transplant, and that it would be great for her to get a chance to get bigger etc. beforehand. So while we really don't know that she will continue as she has been for another year or two, it seems to at least be a possibility. So my question for him was, what about her NG tube? Should we still be expecting her to have that until after transplant?
So we talked aboutt he possibility of doing a G-tube, and I am very happy i posted about that and learned a little bit about that a few months ago. In general i feel like he put a positive spin on the idea, and right now I am in no hurry to take that step.
I thought maybe we should be going in the other direction and trying to get her to take more orally, and he agreed that it is worth a try. Before we were givingher 24 ounces of 30 calorie formula overnight, and then 8 oz during the day and letting her snack whenever she wanted. The new plan is to give her nothing overnight and stick to a strict meal/snack time plan where she only eats in her highchair and we only give her food during regimented times. We first give her solids, then her formula mixed with chocolate surup in a cup, and then if she doesn't drink it all in 20 minues or so we put it through the tube. Today was our first day and she got almost everything through the tube.
We're also trying much harder to work on the walking. We started with a therapist this past week. Havalah walks around on her knees all the time, and the therapist thinks that's what has become her habit to do and that's why she's not walking. So now if we catch her doing it, we make her stop and get up. She does fairly well walking while holding one of our hands but she is so afraid! She also gets extremely angry and throws a fit, to the extent that she will still be upset for 5-10 minutes after we stop trying to make her walk. But at the therapists suggestion we are pushing her a little bit anyhow.
So between the new feeding schedule and the walking, caring for Havalah is much more high maintenance. For the last year we've been so concerned about her weight, and transplant has always seemed to be right around the corner, I feel like the new goal is to try and get her to be more like a normal kid.
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