Wednesday, July 20, 2011

Hanging out... but its ok.

Charlotte has been taking topical steroid eye drops since February. Its now July. That's a long time. Lotsa drops.

As of today's eye appt, she's off of the drops. However, today's eye appt showed 1-2 cells in each eye hanging out.
But that's ok.

She could live a lifetime with 1-2 cells just hanging out. Eye dr's dont fret over 1-2 cells. So moving forward with the plan...

She has two more sessions of Remicade at 4 weeks till she moves on to 6 weeks. If these few cells can just hang out & not invite friends & she can move forward with stretching out the remicade, it will be a win.

One day at a time. She's off the drops! Yay :)

And we reminisced with the ophthalmologist who started looking back at Charlotte's chart, "Wow Charlotte, you are going into kindergarten? I have been seeing you for a long time! Since you were two! We have a long history together!" I agreed & said, "Yep, are you ready to come to her graduation, then wedding, then baby shower?!?!" :) She's so great, she said, "oh gladly!!" Family. Dr's become family!

Thursday, July 14, 2011

And then there was 1 drop....

Charlotte has been decreasing her steroid eye drops since the cells are gone & tightening the regime of Remicade medicine has kicked the uveitis cells to the curb!
Now this week she is down to one drop a day. And we start the optimism of looking ahead since her eyes are cell free again (cells popped up when we stretched her Remicade to 10 weeks). She is currently doing 6 sessions of Remicade every 4 weeks to get those eyes back on track (that's once a month for 1/2 a year!) & now she will start to stretch again, 6 weeks, 8 weeks, 10, 12...
Remicade @ 4weeks:
8.5.11
9.1.11 (she turns 6 on the 24th!)
9.30.11 (she's a kindergartner!!)

Remicade @ 6 weeks:
11.9.11
12.23.11 (Merry Christmas!)
2.3.12
3.16.12

Remicade @ 8 weeks:
5.11.12
7.6.12
8.31.12 (entering 1st grade!!)
10.26.12

Remicade @ 10 weeks:
1.4.13
3.15.13
5.24.13
8.2.13 (entering 2nd grade!!)

4 times at 12 weeks if all is going smooth by this point & then we are done (I haven't mapped that out yet, & probably wont for a few years ;)).
Keeping the Remicade at 200mg's & the Methotrexate at .6 mls each week (shot). Nothing goes very fast :) and we take it one day at a time! Last week we were able to head to the beach, the sun was out but its the Oregon Coast so its brrrrr cold! Writing her name in the sand is her favorite thing!

Saturday, July 2, 2011

Bad Mom Award

Who knew that a 3 mile scooter ride would be a bad idea? eek.
Too much pressure on one leg. She should have rollerbladed.
It would have equaled out the pressure on both legs.

But she scootered the entire three miles & today she woke up limping.
We are making her take it easy but, guilt, guilt, guilt. I feel awful.
It was a fun time, she enjoyed it. I ran with my friend Laura and her two kids & my girls scootered. We stopped at the 1/2 to get a drink at Starbucks & then turned around & went back. But it was just too much on her little legs.
Then we went swimming & then rock climbing.
It was a sports filled day. Maybe too much. Learning lessons. Feeling bad :(