Tuesday, April 22, 2014

For the first time in 575 days...her eyes are clear!

The Wilmer Eye Institute at Johns Hopkins Hospital - April 9th

Dear friends and family,

It's been an exciting few months since my last post. The best news was at our eye check up on April 9th.  Lucianna has no inflammation in her eyes...not one cell...nada!  

So what does this mean?  It means that we finally got the medication dosing to the right level to control the Uveitis in her eyes.  She's not cured by any stretch, but the medication is keeping the inflammation at bay.   She is considered to be in a "medically induced remission" and the goal is to keep her inflammation free.  (That's the tricky part.)  So what doctor's recommend is that stay the course and wait.  Some doctor's believe that if we wait a solid two years and she's had no break-thru flares that we could, conceivable, start weaning her off the Methotrexate.  I have seen many families on our Facebook "Kids with Uveitis" group that have attempted to wean their child from the medications and suddenly they have a flare. So I'm not going to hold my breath.  However, I am focusing on the fact that her eyes are being controlled and not enduring any further damage.  Hooray!  Since last August, we also added,  Meriva-Curcumin SR.  (It's available on Amazon.)  Some studies have shown that the Curcumin may assist in the reduction of inflammation in the eyes.  Interestingly enough, since adding this herbal supplement, she has only seen improvement in her eyes!  We give Lucianna a 1/2 pill each day by simply mixing it into applesauce.  It's supposed to help with a lot of arthritis conditions as well.  Who knows if it's the Curcumin,  or the slight increase in her Methotrexate dose, but we are thrilled!

Something I never really blog about is that every 2 months Lucianna has to have her blood drawn to check for several things, but most importantly,  is liver function.  Methotrexate can cause issues with her liver, (among other things),  so every two months we have to see that all is well.  So far her blood work has come back normal, thank goodness!  I have to bring this up because this is a picture of her getting blood drawn (see left).  Have you ever in your life seen a braver child???  She's just an amazing little girl!  And Miss Bella is an awesome big sister.  Lucianna is unable to be out in the sun without her sunglasses.  She literally can't open her eyes.  Bella will often hold her hand and guide her to the car where her extra pair of sunglasses await her.  So sweet!

In late March, Lucianna turned 5.  It's hard to believe that it's been almost two years since the onset of her Juvenile Rheumatoid Arthritis and only 3 months after that, the discovery of the Uveitis.  I am sure glad those stressful, uncertain times are behind us! I had NO CLUE it would take this long to get here.

So last, but not least, after careful consideration, we have decided that after 7 years of living in WV, that it's time to move closer to our jobs.  So we have sold our house, and have found a home that's only 20 minutes from our jobs!  Putting the girls, particularly Lucianna, in a public school will definitely be a learning process since we have to set up a 504/IEP plan for her in the event her arthritis or her eyes flare and she needs some special consideration.  Never a dull moment!  That said, we are looking forward to having more quality time together and less time spent commuting!  

"Time is free, but it's priceless.  You can't own it, but you can use it.  You can't keep it, but you can spend it.  Once you've lost it, you can never get it back."  -H. MacKay


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