Tuesday, December 23, 2008

Speaking of neglecting things...

I may have missed my opportunity to post this, since Noah's recent illness has led to major feeding regression, but check out Noah's newest skill:

He's not nearly the expert that he seems in this video. The most he's done at home at any one meal is 6 bites independently, and those require coaching. But we now know he can do it, so it's definitely something we'll be working on once I get him to eat again.


Noah has kept us occupied with numerous doctor's appointments, ER visits, and a slew of holiday engagements (I think he got invited to more parties than I did!). I didn't want to neglect to mention that we now have a NEW Teacher of the Deaf who actually has a clue about oral kids and cochlear implants. Unlike our old TOD I actually feel like she's interested in helping Noah to learn. I find that I don't really fit into any of the main philosophies regarding deaf kids so I never really totally agree with anybody, but I think she's a keeper.

Monday, December 8, 2008

How to drive a speech therapist crazy:

1. show that you comprehend a question but never actually get around to answering it

2. sprinkle in a few nonsense words

3. change the subject


Yesterday Noah put a goldfish cracker in his mouth. Of course he took it out again without even attempting to chew or swallow it, but for a few seconds he had real food in his mouth. I never thought I'd see that happen!Of course only a few short hours later he was hysterical because someone tried to give him a wrapped candy cane. We'll get there someday. I hope.
Our feeding team is inspired to try new things so we've made some changes. Noah's Prevacid has been doubled from 15mg to 30mg and he now takes it in the morning instead of at night. The big difference that we've noticed so far is that now he throws up all over his bed each evening instead of his high chair or carseat in the morning. Anyone know why he might feel the need to vomit an entire meal approximately 12 hours after a dose of Prevacid?

We're also sampling EO 28 Splash in an effort to try Noah off of dairy. Thus far I've noticed a distinct lack of couching, retching, gagging, and congestion in my house. Lots of grimacing over the flavor, though, and a major increase in avoidance behaviors at meals. About the same amount of refluxing - that never changes. We still have 2 more flavors to try before the official test, so hopefully he'll fall in love with one of them.

If the increased Prevacid and/or the lack of dairy don't solve all of Noah's feeding issues, or next step will be to try Periactin. After that we may or may not try Neurontin. If that doesn't work I imagine they'll try to come up with this or that in an effort to look like they're doing something, but the fact that they've recently started to refering to "if" Noah eats real food as opposed to "when" makes me think there probably isn't a lot left to try. Not that it matters to me, really. I mean, pureeing food isn't all that much trouble. Id'd be nice if he'd feed himself, but we're actually making progress with that, so I don't imagine it'll be too many years. That'll be a day to celebrate!