Today I went to the children's hospital expecting to get instructions on collecting a sample for genetic testing. It turned out they also needed blood and that it had to be drawn at roughly the same time as the urine (within an hour), plus they were sending their shipment (to a lab in Texas) very soon. So, my great plan (as approved by the physician's assistant on the phone) to hang out at Faith's for lunch while filling Samantha with juice and comfortably waiting for the sample did not work. Instead I had to hold down Samantha again (I hope she won't remember all this and hate me forever) while they tried to draw blood (at least they only failed once).
After failure to cooperate in the bathroom, a visit to the cafeteria for 32 ounces of orange soda and more failure in the bathroom, Samantha was a crying mess, Ellie wet her pants while watching and started crying and I, sitting on the dirty bathroom floor holding a specimen cup (empty still), started crying too. Will just sat there with a confused look on his face as if to say "what the heck is going on?" I will spare you the details of how we finished this visit, but we did, and now we get to wait approximately four weeks for results.
I got home feeling like this was definitely on the top ten list of "worst days of my life" until the neurologist called to say we had gotten in with the Metabolic Geneticist for next Tuesday and that he is very eager to meet with us!! Even though there won't be any test results yet, she said he may want to run more tests (ugh) and he also may want to get us started on some creatine supplementation and possibly excluding argenine from Samantha's diet.
I am excited that they aren't making us wait for weeks to get the ball rolling. I hate everyday thinking that there is something I can do to help Samantha and I'm not doing it. Though there is no diagnosis, it seems like, regardless of the cause, if her brain is low on creatine, it can only help to get her started on some supplementation.
This is the first attempt to "cure" Samantha that I don't secretly suspect won't work before we've even begun. I am so anxious to fast forward through the next week I can barely stand it.
All of this reminds me of the wise counsel of one of Samantha's preschool teachers which was "there are two things you cannot force a child to do: talk and 'go' in the potty".
2 comments:
wow- sounds like an interesting day. sorry you had such a hard time with it!!
I wouldn't let you make me go in the cup either. So there!!!
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