November 6, 2008: A much deserved rest
we took the month off. no doctor’s appointments. not a single one. no sudden rashes or flare-ups that couldn’t be handled with a course of aggressive topical medicine regimens. Tube feeding regimen seems to be working: it’s four nights of tube feeding, one night off. This gives her a deeper sleep (she’s not awakened by the piercing alarm on the tempermental pump, nor does she require frequent diaper changes due to all the liquid she ingests. PT was replaced sometimes by intense sessions of swinging on the table, attempts at jumping without the trampoline, and now, to her delight, the hokey pokey. We start again this week, with blood tests, and check-ups, and weigh-ins.
I have secured what I think is Grandma Lilly’s chocolate chip cookie recipe. I haven’t been able to perfect it to the exact likeness, but they are not very sweet, contain no milk, soy or beef. I’m just as hopeful about the cookies as I am about the bacon.
Speaking of which, she has tried bacon approximately once, but it was in a soup. I wanted to make sure she’d like at least the taste first. But more than that, in the even that she is allergic (pork is one of the only food we didn’t test for), i wanted to keep october as drama-free as possible.
more pictures will be posted, almost done with the site updates.
To shoshanna, whose kid is CAMT case #24, and is currently on Day 3, we send all the hugs and giggles in the world, and know that you couldn’t be in better hands.
