Once the vest was formed (heated & then placed around her to take shape), we headed over to Doernbecher Childrens' Hospital for her 6-month follow-up with the neurometabolic team. They gave us the results of her Comparative Genomic Hybridization (CGH) test -- you guessed it -- NORMAL. It only checks for additions or deletions on about 10,000 genes (~10%-ish), so we didn't really have high hopes of finding anything there, really. And to be sure, her lab reports are always "Normal" -- we expect nothing else.So, for the last few months we've been going on the premise that whatever is affecting Jordan comes from a one-time brain "insult" that just can't be seen on her MRIs. Now, however, out of now where the metabolicist & neurologist seemed to readily agree that she likely has a yet undiscovered, untestable, untreatable metabolic disease that only affects her brain (usually metabolic diseases also wreak havoc on other organs, like livers & spleens -- hers are fine). There are usually about 10 cases per year in the world like this. I guess we hit the lottery (I'd have rather been struck by lightening, myself!). There's nothing we can do about it, so they said to come back for a follow-up in a year or two, and to continue to try to get seizure control through our regular pediatric neurologist (Keppra, which we are in the slow process of increasing to a maximum dosage).
Because of the colds & illnesses going around, Avery came with me to be my helper. She watched over Jordan carefully, and gave her kisses when she was upset (often pushing doctors or therapists out of the way to get to her). She was in charge of all the buttons on the elevators -- for us and for others, now knows how to read & spell UP and DN (ughhhhh, close enough for now I suppose). And when she wasn't helping she was watching a video, coloring, or lying underneath medical equipment (she really doesn't like rooms with more than 2 people in them, so when there were 3 docs in the room for neuro-metabolic clinic, she was under the computer table hiding).
I told her in the morning that if things went well & if she was a good helper we could go on a ride after the appointments. As we walked out of the neurometabolic appointment she looked up and said "so, about that ride???" She hadn't forgotten at all! So we wandered our way through "the Jetsons' " landscape (OHSU is a serious of hospitals & graduate university buildings built on the top of a hill in Portland, and is very strange, if nothing else, to navigate) and over to the tram. The tram is the new symbol of Portland, connecting OHSU on the hill to their expansion campus on the waterfront. Rides are available to the public (6 & over) for $4 return. I was a little worried Avery would be bothered by the heights, but she LOVED it -- both ways. Especially when we went over the forest -- she claims she could see tigers, and lions, and raccoons, and about 50 other animals.
After the tram ride it was back to Shriners for the vest fitting & trial. They had carved up the foam, added straps, and wanted her to wear it for ~30 minutes to see if she had any red spots from it that needed work. She seemed just fine, and Avery & I spent the 30 minutes in the cafeteria eating from the refrigerator section: Jello parfait, watermelon, pineapple, yogurt, and of course, chocolate milk. It was 6.5 hours later when we finally got home, and thanks to Jordan's sore tummy all day I was on my 3rd shirt (covered with barf spots) & Jordan had already used up her 3 outfits I had packed. Luckily we were late enough we got to use the carpool lane on the way home -- zoom zoom from 3:00pm to 6:00pm on weekdays. We were glad to be home!
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