Her arthritis in her eyes - anterior uveitis (iritis)- is still under control (after 6 weeks) so we are continuing to taper 2 of the 3 meds she takes (the 2 steroids).
Here's the official recap for the dr :
We are in week 6 of controlled uveitis since the IV pulse of methylpred. And Charlotte’s appointment today with Dr. Goodman went great as she continues to have the uveitis under control w/ ZERO cells. Our next appt is Wednesday, March 26th & our homework is to work on our recognition of eyesight shapes covering each of her eyes so Dr. Goodman can get an accurate assessment of her vision.
As for meds:
Topical Pred Forte
- Dr. Goodman’s plan is the same as yours: tapering very conservatively.
- We are tapering from every 3 hrs to every 4 hrs – making sure we get in 4x a day. Times being: 730/1130/330/730 & then dialate + ointment at bedtime (even if its at 730, she wants us to administer Pred Forte first).
- We are on week 1 of 2 for 2.0 ML’s in the AM. Friday is our Prednisolone day – we will continue 2.0 ML’s till 3.21, where we will do 1.5 mls for 2 weeks. We are still on the plan to reduce by .5 mls every 2 weeks.
- We are currently in week 10 of methotrexate (weekly shot)
She also went potty ALL day today - i think we are OFFICIAL!!! She went at Emma's ballet today, went at home (in the downstairs big potty). She is hearing her bod!!! WHOO HOOO!
Emma was an award winner at school today & she is very proud of her gold medal for reading many minutes for 50 days. She was recognized & raised her hand when she heard her name called as she stood on the risers with her classmates. She wore her medal even AFTER school.
We have a new game at the dinner table which has been fun & less daunting than the "come up with a topic" that i rack my brain about. We start with one person & each of us has to ask them one question (even Charlotte!). The questions that Emma & Ellie have asked each other have been a little comical. And its nice that it relieves mom & dad from always asking the "so what did you do at school today...."
Tonight Ellie asked Emma "What was your favorite food in your lunch today?" Wow... i wouldnt have asked that one :) and its good to get feedback on my packing!
And on my mind... How to raise money for CARRA.... I keep thinking "How can I host a huge spagetti feed..." Yes, that's what I think about as i drive or go potty :) Then I also think, "who do i know in big businesses that would SPONSOR the race...." Any ideas????
Race for CARRA 5K Run/Walk
Participate in the Race for CARRA: Childhood Arthritis & Rheumatology Research Alliance
5k run/walk for the entire family along the Eastbank Esplanade.
The Start/Finish line is at the Main Street Plaza, where SE Main Street meets the Eastbank Esplanade just north of the Hawthorne Bridge.
100% of proceeds go directly to CARRA to help fund research.
What: Race for CARRA
When: Sunday, June 8th; registration starts at 7:30 am; race starts at 8:30 am
Where: Main Street Plaza
Contact: email@example.com or 503.701.1400