Teresa Jane's Blog: Long Day

Today there were 3 other children at the clinic who have Cystinosis, two of them teenaged boys and a bit later our friend Tina Flershinger from Clarkston, Washington showed up for her visit. The boys were VERY occupied with their electronic games; we got nary a glance from them; save a big grin for these pictures. Joey's mom Mary and Bailey's Grandpa Tim were fun for Kev and me to visit with as we wandered from clinic to main hospital and to one more location for our appointments with Dr. Grimm. He is the head Pediatric Nephrologist here at Stanford and took a long time with us, giving us a thoughtful response to our myriad questions. Jenna and I joined Tina and her father Mark at "The Fish Market" for lunch and then to Great America for some roller coaster rides with Patrick. (Jenna decided the mall could wait while she enjoyed an afternoon with Tina.)

I have a headache. Talking about Cystinosis all day with families and doctors is educational, helping us understand the nuances of the kids' mysterious disease; but it's a drain. I know it's a drain on the kids too...they show it in funny ways; Jenna especially is needy and a little more vulnerable than usual. She had a terrible time with the blood draw again today. They didn't have to poke her more than once this time, but it took about an hour to calm her to the point that a blood draw was possible. She actually hid in a cabinet in the clinic room and shut the door behind her, hiding from us and the nurses. When it was all said and done we got a laugh out of that.

We will stay in Palo Alto this weekend as we have to be here Monday, Tuesday and Wednesday for clinic visits. The next couple days will be fun family days. We just gave Patrick his first dose of the RP103 medication...a big deal! Even more fun is that we only have to wake one of the kids at 3am tonight. Patrick can sleep and sleep--as long as he likes! His hotel room, however, may be a lake in the morning!

Here's the day's photo gallery: