Wednesday, April 2, 2008

Uveitis - we're comin' for ya!

Charlotte's battle with uveitis since November has been a tough battle. We didnt expect the arthritis to go to her eyes, but it did & its been a challenge to get it under cotnrol (to put it lightly) ever since.
3 different steroids have not worked (oral, topical & iv infusions) & her weekly shot of Methotrexate isnt cutting the mustard as well. So we are on to IV infusions of REMICADE. REMICADE is a protein, a biological drug that targets specific proteins in the body's immune system to help control the development of inflammation.

We have our appointments booked at Emanuel Childrens Hospital. These are extensive days spent there, 1/2 days so we have to get our snacks/treats/toys/activities all prepared to camp out while Charlotte learns patience with an IV. I learned my lesson last time too, thank you to Nurse Jody - bring a new toy every day. I have already acquired "Baby Elmo" - a tip from my sweet friend Laura who's daughter Addison (almost two) also joins Charlotte in the JRA challenge - evidently Baby Elmo is POPULAR - he even burps. I think Charlotte will like him :). Now I need to head to target for : My little pony & some Polly Pockets! :)

April 11th
April 25th
May 9th

Those are our big - shoot 'em up days. Then we will continue monthly (every 4 weeks) & try to taper down to 5 weeks, then 6 weeks, etc. (ugh, that starts to creep into the SUMMER. Kids have to deal with illness in the summer TOO????)

Meeting with our pediatric rheumatologist, it does appear that Charlotte's left ankle is a bit inflamed. That's new. Its not causing her any problems so we are not hyper about it. But that does add up to be her magical 5th joint affected by Juvenille Rheumatoid Arthritis - an evil beast.

Under 4 joints you are considered a Pausi. 5+ is considered a Poly. The difference? Your chances of remission & growing out of this are better if you are a pausi. But... we still have hope & so does our dr. about Charlotte kicking this in her future & becoming that ballerina that she wants to be!

But first - lets go enjoy this sunshine, and get to the park. Its spring break after all - lets enjoy the MOMENT & I am going to focus on being in the moment, otherwise, I tend to get a little weepy remembering the last time we had the IV infusions & how it was so not fun for Charlotte.
So Carpe Diem for TODAY!!! As Scarlett would say (a girl who truly lived in the moment) "I wont worry about that now, I will worry about that tomorrow. TOMORROW IS ANOTHER DAY!"

1 comment:

Heaven's Eye Phtotography said...

Everyone is rooting for that amazing little Charlotte of yours! I love your outlook on life and I know she gets her strength from your beautiful spirit. Keep you chin up. Kathy