Tuesday, December 11, 2012

Jingle Bell Walk & Music to our ears!

Jingle Bell Walk for Arthritis 2012

Dear friends and family,

Carrie & Skylar -
"Our marketing team!"
We had an excellent turnout for the Jingle Bell Walk for Arthritis last Saturday!  We had friends, family and coworkers walking with us.  Nothing could have prepared us for the outpouring of love we received in support of our littlest princess.  We set an ambitious goal of $3500. (My hope was to raise $3000.)  That goal was crushed, with a final tally of $4140! We couldn't be more excited!  We were the top fundraising team at the event! 

My dear friend Carrie made over 30 necklaces/awards with a pendant that doubled as a Christmas ornament and had Lucianna's picture and the year on it.  Mom, Dad and big sister all had a variation of the photo on our pendants.  What a thoughtful idea, everyone loved it! Thank you Care (143*872).

I have never participated in a charity walk before but have donated many times to the Breast Cancer walk. We carried a banner that said, "Walking for Lucianna! Our Juvenile Rheumatoid Arthritis and Uveitis Champion!" and when other walkers and runners saw it, they would clap for us and cheer for Lucianna, yelling, "Go Lucianna!".  These moments will live in my mind forever.

I wish I could thank everyone that helped us to meet our goal in this blog post, but you know who are and so do I.  We are deeply grateful and touched by your generosity.  Thank you for caring, for checking in with us to ask how she is, for reading this blog and for opening your wallets.  You sent a clear message that it is not okay for a child to suffer with pain, or worse, face loss of sight because of this disease.  

"Mommy, I wanna 'wun!"
Friday, December 7th, marked the 6 month anniversary of the onset of her symptoms.  I didn't realize we would have such a long road to get her better but there is one thing I have come to realize with absolute certainty:  I am grateful for JRA.  It has opened my eyes to so much and I have learned so much. This disease has taught me to never take a single thing for granted and has made me grateful that my child has a disease that is NOT going to take her from me.  I saw a St. Jude's commercial on TV, (a charity we also donate to), and Jennifer Aniston was interviewing  two young girls who clearly had cancer.  If you can bring yourself to watch it, the behind the scene's clip is here:  Jennifer Aniston's St. Jude video  It is a tangible reminder that there are parents out there who face the unthinkable diagnosis.  Let's not forget these families.  I personally love my St. Jude's return address labels!

What a great day!

At a time of year when we all count our blessings and try to be thankful for the gifts we have in life, I am thankful for JRA, [Uveitis, not so much. lol.]  I am hopeful that 2013 brings remission, good health and nothing but gratitude. 

Lucianna had her two week follow up eye appointment today.  No inflammation! Drops are now down to 1 dose, left eye, every other day.  What a fantastic Christmas present!!! This was music to our ears!  We see her rheumatologist on January 10th.  We hope to learn that Lucianna is free of any inflammation in her joints and that her labs come back with no signs that the medicines are causing any stress or damage to her liver.  While we wish to just get to the end result...we are taking baby steps.

With that, I will end with Lucianna's favorite Christmas song:

Merry Christmas everyone!

Lucianna's proud and grateful mama

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