Derek's td-dmps arrived today and he got his first dose tonight. I'm scared, nervous and hopeful all at once. We are doing a bit of a different protocol than most use the td-dmps for. Instead of every other day doses we are doing every 8 hours, but the dose is broken up smaller, this is to keep the dose more constant in his system.
I've found we are in good company though, maybe only a few, but there are others doing the same. I'll keep everyone updated as we begin. I'll also have another link soon, with some of Derek's pictures that he draws scanned in, he's pretty remarkable.
Wednesday, December 08, 2004
Thursday, December 02, 2004
Where We Are At
Seems very little has happened recently. I feel like we are in a hurry-up-and-wait mode. We've heard back from some of Derek's tests. Good news he was negative for Fragile X. His hair test first came back and was put to us as "deranged metabolism" and it was to be re-ran under a different test. We still haven't heard back yet on the second test. His TD-DMPS was to be ordered but I haven't seen it nor heard if it was.
The last week was pretty nuts, sometime last Tuesday or so he flipped his schedule almost in reverse and that made it rather unpleasant, him and I both exhausted. Last night it was better and I hope it will continue to get better. I also had pulled all vitamins and minerals just to see if those were causing problems and now I get to add them all back in slowly. I still am having a heck of a time getting cod liver oil down him despite trying all different brands and hiding it.
I'm going to a meeting next week where the mom has got her insurance to cover her ABA therapy. I hope to learn something and take action on our end. I really want to see some therapy in here soon.
Enough of the boring stuff, how about some cute things for the little guy this week?
We have this new little vacuum called a Roomba that runs over the floor, and is in the shape of a circle. Derek finds it pretty fascinating and calls it "circle"
Last week, when saying goodbye to relatives daddy piped up with "goodbye, see you soon", now when you leave Derek tells you "bye, see...soon" Its rather cute!
So there's our little update, isn't much to tell right now, hopefully I will next time.
The last week was pretty nuts, sometime last Tuesday or so he flipped his schedule almost in reverse and that made it rather unpleasant, him and I both exhausted. Last night it was better and I hope it will continue to get better. I also had pulled all vitamins and minerals just to see if those were causing problems and now I get to add them all back in slowly. I still am having a heck of a time getting cod liver oil down him despite trying all different brands and hiding it.
I'm going to a meeting next week where the mom has got her insurance to cover her ABA therapy. I hope to learn something and take action on our end. I really want to see some therapy in here soon.
Enough of the boring stuff, how about some cute things for the little guy this week?
We have this new little vacuum called a Roomba that runs over the floor, and is in the shape of a circle. Derek finds it pretty fascinating and calls it "circle"
Last week, when saying goodbye to relatives daddy piped up with "goodbye, see you soon", now when you leave Derek tells you "bye, see...soon" Its rather cute!
So there's our little update, isn't much to tell right now, hopefully I will next time.
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