Don't be fooled by her cute little smile. My girl who usually sleeps great all night long has been waking up screaming, not taking naps, clingy, whiny, fussy, fidgity, and did I mention waking up screaming? (and no, it's not night terrors, it's reflux) This morning I had to get her out of bed and put her in the stroller in the living room where she immediately stopped screaming and went back to sleep for a couple hours. (Santa brought it to her. It reclines to a very comfortable angle for her. I love it.) She's also had blood coming out of her drainage tube again and tugging at the tube like it's bothering her. When she had her testing in Ohio done, they took the tube out for one of the tests and then had to put in a slightly smaller size when they replaced it because they only had a 1.5 or 2.0 and her old one was a 1.7. I picked the 1.5 because the 2.0 would have been too big and would have leaked and probably allowed granulation tissue to grow again, which is awful. (PS the 1.5/1.7/2.0 is the length of the part of the GJ tube that is between the outside of her stomach and the inside of her stomach & is measure in cm.) Probably going to need that changed, darn it.
So, once again we've come to a point of needing to make some changes with her. I'm pretty much over the disappointment of not having anyone find something that they know how to fix for her and I'm coming to terms with the fact that we have no idea how or how long it will take to make her better. Since we don't know how long the road ahead of us is, I'm ready to start walking down it.
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