Wednesday, November 17, 2010
Today Jackson got his communication device and environmental
controller. Gary from South Texas Medical was here for 2 hours trying to
get everything set up. It took Gary, Heidi (speech therapist) and I quite
a while to figure it all out. Two phone calls to customer support
later we found out that one of the controllers was defective. He doesn't
seem too impressed with either right now but I'll keep working with him.
He will get a light box and music mirror later this week.
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| Big Mac switch and Environmental controls |
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| Jack posing with his tactile communicator |
So after my good afternoon I got a call back from his
neurologist. He spoke to the neurologist in Houston to get confirmation
on what I told him the day before. He wants to keep in contact over
the next few weeks while we increase his Baclofen. I didn't see any
improvement with starting it but he's only had it once. He also told me
that he would consider weaning him off of Keppra!! Music to my
ears! Of course I don't want to do it right now since he just started the
Baclofen but maybe in a month. I told him that I don't think that the
Keppra really did anything for his seizures so he's willing to get him off of
it. Then if he starts to have more seizures he can try Depakote or go
back on Keppra. I've read so many stories about once a child is off Keppra
the keto diet works much better. Even though it was good news I still
felt "deflated" after.
thank you for your sweet comment on my blog! I'm so sorry to hear about your son. It never gets easier.......in my opinion at least. That desire to see them is always there! Praying for you!!
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