By the time we were done with all of this (3 hours later) it was off to Doernbecher Children's Hospital (also at OHSU) for a blood draw for the Comparative Genomic Hybridization (CGH) test. This test will look at some tens of thousands of her genes to see if any of them have additions or deletions that could be causing her condition. I'm sure, like everything else, it will come back normal, but we've been talking about it and eliminating other things since February, so we'll give this one a try. Unfortunately, even though it can find additions and deletions, it can't find mutations, so it's only moderately useful -- but better than nothing.
She's had good luck with blood draws lately (i.e. getting blood on the first or second poke), and Thursday was no different. However, after very little sleep the night before herself, and 3 hours of AFO, PT, & OT torture, she was in no mood to be invaded with a needle. It took 3 people to get the blood: one phlebotomist to draw the blood, one to hold her arm, and me to lie completely across her body to hold her still, particualrly her shoulder. After they got the blood and removed the tourniquet the needle practically flew out of her arm of steel & she screamed in agony. We have both had better days. . . .
This is Jordan bending the arm board from her IV a couple of weeks ago. She may be floppy most of the time, but when she wants to use her muscles, they're like steel. Boy is it fun to get her dressed. . . .
Jordan's new "shin kickers" (AFOs) -- she wasn't too happy about them on Thursday, but she doesn't really seem to mind them now. It's easier to stop her feet from being kittywampus than trying to untangle them later. She even has skids on the bottom so she can use them in the stander without shoes. 
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