Wednesday, November 28, 2012

Lots to be thankful for!

Too bad for them that Mommy likes "matchy-matchy".
 ***Blog will have a video for those of you getting this on your email.
Dear friends and family,

Lucianna had her eye appointment today and we were thrilled to learn that she is continuing to improve!  The pediatric ophthalmologist has given us permission to drop her eye drop dose to once a day for the left eye and once every other day for the right eye.  The dilating eye drop, (the one that burns), is only in her left at night, and she tolerates it really well now.  She no longer cries or whines, she does it and then says, "where's my gummy vitamin?" (Which is her treat for the eye drop...instead of all the jelly beans I started out giving her!)    Considering that there was a time where we were administering drops every hour, (for what seemed like an eternity), we are grateful for this news. 

We love watching the Macy's Thanksgiving Day Parade!
Lucianna is also showing amazing progress on the Methotrexate, ("MTX"), not only with her eyes but with her joints.  While it was no easy decision to move forward with putting her on this medication with all it's side effects and potential health risks, I truly believe that swift action in the treatment of her conditions will make a huge difference in her long-term outcome for a medically induced remission.  (Just my personal opinion.)  To anyone on the street, you would never know she was sick.  No longer does she show signs of stiffness, or a funny walk, (except in the morning/after nap).  And with each passing week, she seems to be able to do everything that other kids can.  She rides a bike, dances, jumps and can now climb the steps again on her own.  It took about 10 weeks on the MTX to see this massive change...but it was worth the wait.  So how long we will have to give her this medicine?  We can expect her to be on it for probably 6 months to a year.  We need to be sure that she continues to improve with no relapses before her rheumatologist will consider weaning her.  So we watch, we wait and we hope...

On Saturday, December 8th, we will walk in Arlington, VA for the Jingle Bell Walk/Run for Arthritis.  We have 52 people who donated in support of Lucianna and will have 31 of those wonderfully generous people walk with us!  We are so fortunate to have such an awesome support group!  So far we have raised over $3000!!!!  Thank you all for opening your hearts and wallets to support our little girl!  I plan to send our walkers an update late this week with all the details.

So nearly 6 months after learning our baby girl has JRA and almost 3 months after learning she has Uveitis, she is doing well.  My brain tells me to be cautiously optimistic, but my heart is exploding with joy and profound encouragement. 

I will send another update after our Jingle Bell Walk/Run and her next eye appointment which is December 11th.  See you with bells on December 8th!

Lucianna's proud and joyful Mama   

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