Jenna has the stomach flu...

After a great weekend at the Natalie's Wish event in Orange County we flew to Palo Alto for our final week of the drug trial; and wouldn't you know our Jenna got the stomach flu. It hit her hard, quickly, and when we went in for the routine labs required for the drug trial, the doctor recommended a trip to the ER for the day. There she could receive fluids and the potassium so important to keep her on track. We were disappointed that after this whole day in the ER, her blood chemistry levels have declined further (even though the tough little bird looked quite good to me) in spite of the IV fluids. She is being moved from the ER at Stanford Children's to the Pediatric Unit, where she will spend the night with Kevin by her side. Patrick and I returned to the hotel in a cab and he is already asleep. The sight of the ER and the sight of his sister IN it had him pretty shaken. I myself am so tired and worried and weary of Cystinosis I'm kind of in the clouds...
Thanks for keeping our Jenna in your thoughts. She didn't shed a tear the whole day in the ER...just watched the IV being put in, watched a movie, took a nap and chatted with nurses as they tended to her. : )

Teresa

Saturday at Home

It is a wonderful day.  The wind is blowing and it's not much like Spring, but the kids and Kevin and Tucker and I are all HOME and I revel in each little thing we do that is part of our weekend routine here.

Last night was a significant one because Jenna, who is on the 12 hour medication, slept from 9pm until 8am this morning!  This was the first night in her life that her sleep was absolutely uninterrupted by water refills or medications.  While I suspect this won't happen all the time, it is really great to know that it's possible! 

We leave for our 6th Natalie's Wish event in Newport Beach on Thursday.  On Sunday we fly directly from there to San Jose for our final week of the trial at Stanford.  One more long week and we're done! 

I will continute to keep you posted.

Love, T.

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!