Sunday, July 12, 2009

We've been in a holding pattern....

But I wanted to update the blog, so here goes...

Dominic's doing good at Alpine. Nothing earth shattering is happening, but we are seeing a lot more frustration on his part because he's trying harder to communicate and we're just not understanding what he wants. Some days it seems like his receptive language (eg, understanding and following in struction) is starting to do better. At MIL's yesterday, she could tell a difference in his behavior from the last time she saw him, which was about 2 weeks ago - he was calmer, listening better, playing more appropriately with his toys, and sat really still for his haircut (I only had to hold his head for a tiny bit of it).

I'm keeping very close track of his supplements, and doing quick updates daily in an excel spreadsheet of specific things (yes, I'm tracking poop, but also sleep, behavior, and skin issues). Nothing remarkable has shown up with the most recent tweaking of supplementation, aside from Milk Thistle constipating him, so we reduced the dose by half. We start him on a chelation round tomorrow, so will log what we see. I've been warned that his behaviors will increase while he chelates, but so far he hasn't followed any of the normal side effects kids have from these supplements, so we'll see.

We're keeping our heads above water, barely, and are really grateful to those of you who've made contributions towards his therapy, every little bit helps so much. We've now got a best case scenario, a couple of in the middle back up plans, and a worst case scenario for making sure he can get therapy from Alpine as long as he needs it. Best case is of course, insurance kicks in. Worst case is we empty retirement funds and take the tax hit. Everything seems to hinge on what insurance will do, and we have submitted June's invoice, but it hasn't appeared on the insurance webpage yet - I expect it'll appear in the next week or so. Then they have 30 days to make a decision.

No comments: