Thursday, August 5, 2010

Busy Summer

So, yes, as all Bloggers say, "It's been a while." As if anyone is sitting on their hands pining for my musings. I'll make this one quick, as I've got to get to the store, but will try to be a bit better about updating. I'm really grateful for all of you who follow this and are supportive of us, and her. It's a wonderful blessing to have such dear and kind friends.

VeeGee's pharyngeal flap revision was at the beginning of July. We had been warned that there was a good chance that she would have significant loss of speech production, or, rather, that there would be significant increase of nasality in her speech. We went ahead with the surgery, nevertheless, because we figured, hey, breathing's more important than talking. Also, (and I think I may have covered this before) it seems to us that her WILL to communicate is surely going to overcome any of these setbacks.

We went to Vanderbilt prepared to stay for a long time, partly because we were going in on the holiday weekend when we were sure that most docs, our primary surgeon especially, would be on vacation. Also, we remembered last time (in April of 09) where we thought we'd be there three or four days, and it turned into 12. We were really amazed when they let us out in just over four days. AMAZING. AND, best of all, it doesn't seem that her speech has been too negatively impacted. We can definitely tell a bit of an increase in nasality - but, who cares?

So, she's starting kindergarten this year. Of course, we have to go to Nashville on the first day of school. Ugh. THIS doctor is addressing her GI issues (stop reading or blink if you've a sensitive stomach). This poor child cannot poop. Not without adult-dose Miralax every single day. It is horrible. And that matters, too, because if she can't eliminate, she can't increase her caloric intake (still 100% g-tube), which means she can't gain weight (she hasn't gained an ounce in over eight months). It's a stressful thing to watch your baby retch and retch because she's too full, knowing full well that she's not gaining weight. The GI has done two separate biopsies for Hirschprung's Disease, both of which came back negative, though that doesn't mean she's actually negative, just that they've not snipped the part of the colon affected. A part of me wishes they could just "install" a MACE and be done with it. K just can't stand the thought of yet another hole in her body. We'll see.