We are in Palo Alto and will head to the clinic this morning for a pretty long visit. The kids were officially accepted into the study and the actual drug research part of it begins today. Of course the purpose of the trial is to test the efficacy of the "RP103 Delayed Release Cystagon"; so the patients spend half of the study on their existing drug and half the study on the RP103. Wouldn't you know that the computer randomized Jenna and Patrick's participation to opposite schedules? Would've been a treat to have them on the same protocol the whole time---but this will keep our minds sharp.
Patrick will take his first dose of the 12 hour medication today and will get to experience it for the next 3 weeks! Wonderful! Jenna will remain on the 6 hour schedule and they will switch in 3 weeks. At the end of all this, of course, we will take home the 12 hour meds for the long term.
Our boy is absolutely obsessed with roller coasters. He knows how to go on to You Tube and watch the videos that people have taken from the front seat of roller coasters around the world. Today he'll get to experience one for real as his Dad will take him to Great America Theme Park after the clinic visit. Jenna thought it would be more fun to do a "girly thing" with mommy, so we will stick close to Stanford Mall. I am thrilled with this scenario--I don't care for theme parks; but quite enjoy a Mall!
Here's a link to one of Patrick's Favorites:
http://www.youtube.com/watch?v=0RPcNwlcAoI&feature=relmfu
Fun to have Kevin here. Thanks to Heather for the fun gift bags that kept the kids busy and happy on our way here; and thank you to Aunt Nancy for coming to take over at the beginning of the week when Kev leaves!
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