Thursday, July 1, 2010

Random updates:

- We’re still in a holding pattern – finishing up our first round of HBOT, doing full day ABA. It seems like some of Dominic’s verbals are slowing down which isn’t exactly what we were hoping would be happening around HBOT session 34, BUT, what we are being told by Alpine is that what he is saying is for the most part clear, and the reduction in attempts has been a reduction in jibberjabber.

- A good friend of mine from college came to visit on Sunday. She’s a vet and was at a conference in Ft Collins. She bought Dominic a cup with Animals on it. One of those cool cups that when you put warm liquid it in, the pictures disappear to show something else. These animals disappeared to show skeletons. So Dominic took one look at the skeletons and said “ICE CUBE”. I handed him an ice cube, and he put it in the water. So the animals stopped being skeletons. Whether he actually GOT IT, or just wanted cold water instead of warm, I have no idea.

- Today marks the first day of our supplement break (no supplements until Monday, so that his blood and urine tests on Sunday and Monday reflect what his body has, not what he ingested the day before). Should be interesting… no GABA, no Lithium....

- For the most part, Dominic adores HBOT sessions. Yesterday, however, he threw a massive temper tantrum for no apparent reason – he wouldn’t stop spitting in the sauna, so we made him get out, which made him mad. And then we would let him horse around while getting in the HBOT chamber, which made him mad. Then I made him wear the oxygen mask which made him mad. Seriously, it was a wrestling match in the chamber, and by the time I got him calm (mr B didn’t think I was going to calm him down, but I did), we had raised the temp in there so much that condensation was actually dripping from the ceiling. Today is session 34. Hopefully it will be CALM. I brought his favorite movie, Dora….

- Next week Dominic has the entire week off from Alpine, and I’m taking the week off of work. I’ve made us a schedule with something to do outside every day (found a swimming pool that’s actually not expensive, so we’ll go a couple of times, we’ll go to the spray ground a couple of times, and we’ll go to a couple of parks). Also next week, we have his annual ST evaluation and his annual OT evaluation. It’ll be interesting to see the shifts since last year’s evaluations

-The insurance finally found us a psychologist in Colorado Springs, ON the plan, who can do cognitive testing. Appointment is August 16. HOWEVER, no one is quite sure what kind of dx code they’ll have to use for billing – they can’t use his medical dx of aphasia for mental health claim, and since he doesn’t have (nor will I permit him to have) a dx of autism, they aren’t sure how to bill it. I’m wondering how precisely a psychologist bills cognitive testing for someone w/no dx at all?

- Dominic's making progress on learning colors. He's been struggling with colors now for probably 9 months. (shapes have been hard, too) What he will do, is tell you the color (if its blue, yellow, green, orange, or purple. Red is still a problem) of a gummi bear if he knows hes going to get to eat it. But he won't generalize to colors of other items. Everywhere we go, I ask him what color something is... and generally, he'll get orange, blue, green and purple right.

- I've said all along we'll be able to afford the ABA therapy, supplements, and HBOT as long as nothing breaks. I've done spreadsheets and run numbers compulsively and know that as long as we can maintain w/minimal credit card usage and putting $1K a month into the Dominic fund, we'll be able to continue w/therapy through next summer as contracted. Things are starting to break and we're using the credit card way more than we should. Makes sense, tho, we've been living on a shoestring for a year now. Since April, we've had unexpected expenses of over $2K (dental expenses, bald and flat tires, the fence drama, dominic cracking Rod's glasses, bad sectors on the hard drive causing the computer to need the computer doctor...) and now both cars are up for their 100K mileage tuneup, plus there's something wrong with the neon's driver side lock that needs a mechanic and we've got $280 out of pocket for Dominic's testing that we need to spend next week. We're walking a tightrope, and what we're hoping to avoid is pulling Rod's 401K. Jury is still out.

- Interesting article over at Age of Autism today - talking about the combination of genetic mutation, environmental toxin, and virus in Crohns disease and how many DAN doctors have used that triangle for Autism for many years. It makes sense to me.

- I did the monthly ATEC test for Dominic. His score is down to 17. For the record, here's how its changed";
7/8/09: 93 (this was w/the horrible DMPS regression)
8/26/09: 53
11/20/09: 38
1/18/10: 35
2/3/10: 29
5/1/10: 29
6/3/10: 24
7/1/10: 17

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