Day 1

We are home after visit #1.  It is one of 6 that we'll take between now and May 27th, assuming the kids are accepted into the study.  The car travel time is the hardest part.  The kids are restless and they argue, they are thirsty, have to pee, have to poop, are hungry, "can I hear a different song"?  This is not unique to our children, of course; but it makes it no less annoying.  I have to practice breathing peacefully.  I need to start yoga classes again.

It takes 10 minutes from hotel (where we all slept like babies) to clinic.  There is currently a building under construction for Stanford's "Clinical and Translational Research" department.  Until then studies such as the "RP103 Delayed Release Cystagon Trial" take place in a rather small medical office building about 100 yards from Lucille Packard Children's Hospital.  It is a beautiful campus and the kids will have fun riding bikes around it on future visits. We walked from clinic to the main children's hospital during our visit so the kids could have EKG's done.  The EKG, as you might imagine with all those wires and what-not; was a very scary thing that ended up being quite fun...mostly it tickled. 

At tuck-in tonight I learned that Patrick's top three experiences of the trip were: 1.  The pool and hot tub (and bathtub!) at the hotel. 2.  Our lunch at California Pizza Kitchen today. 3.  The EKG! 

Jenna's were 1.)  Meeting Xiao Xiao Gao, (pronounced "shao shao gao", he is the drug study coordinator; an efficient and very accommodating young host who aspires to be a surgeon).  2.) The hotel pool and hot tub. 3.)  The DUMBarton Bridge.  Seriously.  Yesterday, upon entering our hotel room, she asked: "well where is my little welcome basket?".



Jenna weighed in at 41.2 lbs.  Xiao Xiao can't tell us much about our chances; but it seems likely that both kids will be accepted.  The data from today's and next week's visit will be given to the Pharma. company, who will make the decision based on their own and the FDA's guidelines.  Dr. Minnie Sarwal, the pediatric nephrologist who saw the kids today is going to recommend that Jenna is a good candidate for the study in her professional opinion   I will be able to share the official answer next Wednesday afternoon.

The bummers were a change in medication schedule to 9am/3pm/9pm/3am which will be hard to get used to and will have us waking the kids up twice a night.  And Dr. Sarwal was concerned about the kids' cholesterol levels and that they are on statins at such a young age.  She is ordering special blood work for next week; to evaluate further. These are good things to learn as we go.  To see some of the best doctors in the field for so many visits will surely be enlightening.

Love, TJ

Homework on the way to Stanford lasted about 10 minutes.

The kids with Xiao Xiao and Daddy

They made a little pal while waiting at the Cardiology Clinic

Jenna's EKG (required for ANY type of drug study)

He was terrified, but it wasn't so bad!

Lunch. The binoculars were a big part of the trip. Jenna wore them everywhere; like a little birdwatcher.

We had a little lemonade stand in the sunshine when we got home!