Then... what was supposed to be a pit stop at the lab while we were out ended up costing our whole night.....boo! :-( We need to check Sophia's "levels" because of this seizure medication she's on called phenylbarbitol. This was her first "check". We stopped by the lab in Hurricane, but they didn't feel comfortable finding a vein because of how young, and chubby she is. So we had to drive in to the into St. George. But not before Sophie left her puke on the floor ;-) At the hospital lab they tried both arms multiple times and ended up pricking her heels and squeezing the blood out. Drop. By. Drop :-( It took an hour. She screamed the whole time. Jason had to run and get her oxygen from the car because she was turning blue around her nose from all the crying. And subsequently she had a terrible time with her dystonia last night (uncontrollable jerky movements, like parkinson's, and gets worse when she's stressed) :-( It was heart-wrenching. The good news though is that her levels are all fine and so we can continue with this medication, which seems to be working. The bad news is she'll need her levels checked regularly :-(
(*side note the lab tech's were super nice and did everything they could for her. It was just a crappy situation for all of us :-(
Then this morning she had a fever :-( IDK if she picked it up from the lab or what but we had to cancel our trip to Navajo Lake. It's a place my parent's took me as a kid. One of those "core memories" places for me. I put it on her bucketlist because I want her to see it. Hopefully we'll get another chance soon. This is the 3rd trip that has had to be cancelled. It's starting to bum me out. But I won't stop trying to show her what I love about this world ;-) It will be nice for all of us to have memories with her, and I think I've said this before, but I personally believe that she'll be able to visit those memories any time she wants on the other side.
Sophia Lately...
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