Monday, May 4, 2009

Moving Forward

.... continuing from last post: The Dr. recommended we do stretch out Charlotte's current Remicade treatments from 4 to 5 weeks. He believed this was a good route to take given her current ability to hold steady since August w/out steroid eye drops. The route we are taking w/ Remicade & MTX is working, now lets see how well its holding & if we are starting to nip it in the bud.
So this Thursday is the 1st 5'weeker (like a niner) Remicade treatment. We just had her eye appt today where all is quiet in the pretty blues. Charlotte also had her eyes dilated since we hadn't done that in awhile. That wasn't fun for her but necessary. It allows the ophthalmologist to look at the optic nerve & make sure there is no damage there. It also allows her to check vision more accurately than the picture tests Charlotte wings every month (we adults do letters, children do visual pictures of single objects: hand, car, cake, horse, telephone).

All is good. Amazing body clock in her though, she's been asking since this weekend when she is going to the hospital. She knows its coming....without a calendar its like her body alarm has gone off & she wants to prep the pouting, the depression, the whining :) Its good to get a head start on those things! HA!
We had some hot cocoa tonight w/ dinner since the rain wouldn't stop & it was a bit stormy: some warm chocolate was needed! So here's the girls after getting a shot of whip cream in their mouths! (another piece of evidence that we wear a Tottie's Prettie every day, even w/ jammies!)

1 comment:

Dana said...

Hi! I have been following your blog and will keep your daughter in my prayers. My daughter, Mia, also has JRA. She was doing well this past December and we started to wean her off the medicine, but then she had a flare. A bad one! Another fellow JRA mom/blogger recommended Dr. Foster. We were seeing another doc, but didn't know she wasn't a uveitis we switched over after her doc said she was clear, but her rheumy said she wasn't. In the end, after visiting Foster's office, she was clear. However, her joints (right elbow and left knee) are pretty bad. She just returned from Boston a few hours ago - she had her knee drained for the first time and a steroid injection into the joint.

Anyways, I just wanted to say that I am praying for Charlotte and for you. This disease is so heartbreaking, but it is good to know we aren't alone!