Friday, August 14, 2009

Don't Get Too Comfy

JUST when you think you are on an even road....

JUST when you think it might be (gasp) licked...


JUST when you start making future plans & setting the course for stretching medicinal intervals....



Then we get the reality check of what's really in control here. The disease.

Charlotte's routine eye exam, this week, showed a cell floating in her left eye. They call it a "trace". Waiting two days to hear from her uveitis specialist in Boston (Dr. Stephen Foster) on what that means exactly, has been deflating. Because thoughts are just racing of what this could mean or not mean.

He replied today that this one cell, a trace, is "trivial." But as one fellow JRA-mom said t o me, "I hope that one cell doesn't have friends..." & that's my worry exactly. Would love to have a Dr. set my expectations, is a trace something that could happen throughout her life? At some point (and we are nearing 2 years with Charlotte having this disease), I would like to handle & deal with more grace, the bumps, hiccups, & the"trace"! Its hard to not get frustrated & angry about these bumps in the road even if they are, as her Dr. put it, "trivial."

Wednesday, August 5, 2009

A year off drops

This is the month to celebrate 1 year off of steroid eye drops for Charlotte. When uveitis appears, Pred Forte (steroid eye drops) are immediately started to curb the inflammation. Those drops did not work for Charlotte (even dosing hourly for weeks). That is why she went on Remicade & Methotrexate (started in March 08). She has had no flare ups in her eyes & the combination of Remicade & Methotrexate is a good combo for her, its doing its job! We will go 7-8 more months of Remicade & Methotrexate before we start to taper (a total of 2 years being on that combo).
Charlotte was getting Remicade every 4 weeks & now we are in our 3 dose of every 5 weeks. We will taper that to every 6 weeks after a 4th dosage. A little slow for the stretching of the intervals in our Ped. Rheumy's opinion. But we needed to go slower on that stretching only because if there had been a hiccup & she got a flare up, it would be back to square one. So i like to be a little more conservative, a little more cautious ...

Next month Charlotte starts preschool. She is excited, we are excited, she will have a BLAST with her friends & her sweet, adoring teachers. They are well aware of Charlotte's history, they were with us from the beginning (since Ellie was attending there when we discovered & went through the beginnings of the uveitis & the joints).
Are they ready for this girl?!?!?

And not to be a worry wart, but I am cautious because being at school also means being susceptible to virus's & bacteria (colds & chicken pox!). So that is also why i am a little slow & stretching out her successful Remicade intervals. She's entering a new phase in her life where she's open to more ... stuff! So we are taking our stretching slow & celebrating every ophthalmology visit, every "finish" of her Remicade!!! And we are counting down....