Tuesday, December 1, 2009

b12 stabilized, goldenseal in, diflucan phasing out - he seems great!

I don't have much time but I need to get this stuff down before I forget.

First, last week my wife met with Adam's teacher for the first time for an update that was outside the confines of a formal IEP meeting. My god, she had a great time. It's so abundantly apparent how clued in his teacher is to him, how much she cares, and how much she knows about Adam. It's a HUGE HUGE relief to have her versus 2 years ago when we had a clueless teacher and knew that Adam was losing a year of education to incompetence. It makes us sleep so much better at night. The teacher and the social worker and the OT all had stories to tell of how Adam's a totally different kid this year versus last year. The progress has been amazing. It's great to recount this stuff, as we're just now getting over a bit of a peaky/valley difficult time where his progress wasn't so apparent to us. Now with his B12 level seemingly dialed in, we can move forward.

The family travelled 2 minivans strong up to Adam's aunt's house in Minnesota for the Thanksgiving holiday. Adam's now on 0.05mL of mB12 every 2 days and has been for about a week now, I think, and thankfully this dose seems right for him--he was great on the trip, and my god what a difference has made since he was last up there a year ago. After we got back from the trip, we phased in goldenseal (a natural anti-fungal) and dropped the morning dose of diflucan (fluconizole). He's being cycled off the fluconizole prescription anti-fungal as too much of that can lead to liver issues. His last liver panel was fine, but it's time to cycle him off. Goldenseal, like grapefruit seed extract acts as a natural anti-fungal, and that's replacing the fluconizole in his regimen now.

Though toward the end of the stay, he got bored enough to start stimming on DVD rewinding and such, he was soooo much better that it was amazing. At the beginning of the trip when we got up there, there was no stimming at all to speak of, and he he sat and watched TV with with his uncle, lying up against him like a totally normal kid, and his behavior wasn't an issue really much at all.

He continues playing more and more with our 3 year old... and they are getting pretty funny together.

New things he's done that are cause for small celebrations:

Yesterday, Adam came over from grandma's for school and my wife had forgotten to put on his hearing aids. He said "hearing aids?" aware that he was missing them. Has never happened before.

On Sunday, his uncle H got a hair cut. Adam noticed and said "I like your haircut" to him. Unprecedented awareness of change and spontaneous use of expressive language.

Also on Sunday, I spent the better part of the day at his dad/grandma/uncle's house with our 3 year old and the two of them played together well and happily pretty much the whole time, running after each other and all. Adam even closed the 3 year old into a room once and ran away with a Cheshire cat grin on his face knowing he was being funny. Our boy came out complaining about it, but it was just too friggin funny to see Adam willfully doing something very normal Big Brothery to our boy.

I had to discipline Adam several times on Sunday as he does still want to throw crap down the stairs there. He knows it's wrong, but he seems to be stimming off the sound things make when they crash. I took his 2 printouts away one after the other reinforcing that he's losing them for 10 minutes because he threw things down the stairs. He seemed to get it and didn't melt down over it. I had both his printouts at one point and he threw something again, and I had to improvise. "Give me your shirt, Adam" I said and I just took it off him. I told him he could have it back in 10 minutes if he didn't throw anything down the stairs. He complied and got his shirt back... and eventually both printouts. He had those printouts given back and taken away probably 6 times throughout the day, but it was good... he learned, and I think his dad and uncles also learned a few ways to discipline him that don't involve a lot of frustration or emotional negativity.

So much for that being quick. LOL.