We made it!

In spite of all my fear and loathing; yesterday was not so bad.  Both kids had a good cry when their lines were put in...but after that hard part was done the rest of the 12 hour day was just fine.  Patrick watched the clock very carefully all day--keeping the nurses on course for his hourly blood draws.

Now the switch.  Jenna took her first dose of the new medication last night and will continue on it unitl the end of the study.  Patrick reverts back to the 6 hour medication schedule until the end.  The final day of testing, May 25, will be like yesterday--a full 12 hours of constant bloodwork. At that point we'll enroll the kids into the long term study and they'll both get the 12 hour medication for at least 2 years or until FDA approval.  Kev and I look forward to May 26--that first day when both kids will be on the new blue pills!

I'll admit I'm a little weary to write much....here are some videos and  images worth a thousand (or more!) words....click on the arrow to view youtube videos....

Prior to our departure last week we got to visit Steve Chamberlain at his Horse Ranch.  The kids rode a  pony and got to feed a baby goat...Thank you, Steve, for the really fun day. 

After the drive here and the first day at the clinic this week; I really loved this moment.....



 Coyote Point Park was spectacular! 

Aunt Nancy spent two nights this week and kept us all sane!

Multi tasks watching a video and preparing pizza Lunchables.

Jenna on her perch at the clinic yesterday...

We love Nurse Cindy. The kids picked out little cakes at a wonderful specialty market at Stanford.

 Jenna wanted Cindy's name written on hers!