Yesterday's appointment was much better. Jenna, instead of being terrified to go back, worked hard to prepare herself for a successful experience. She woke and drank a lot of water without even being reminded, ate a big breakfast and had a great attitude. I heard her chanting to herself in the bathroom: "I know I can do it, I know I can do it, I know I can do it...". No tears yesterday--just celebrations of success. After their appointments we found a pretty place on the Stanford campus to get their bikes out of the car.
We still have to wait until mid week next week to be certain the kids can be in the study. The purpose of the last three days was to get consistent blood work that will be evaluated to determine their average cystine levels. They must have levels below 1.0 to participate. Since they began taking Cystagon in 2006 they have never had levels above 1.0 (Jenna's was 2.5 at diagnosis, Patrick's 3.8). The blood samples take a lot of time to prepare and evaluate after they are mailed to Scripps...so we will wait to hear.
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