Friday, March 15, 2013

I will be the best advocate on the planet.

I had no idea she was making this face.

Dear friends and family,

Unfortunately, Lucianna's two week follow up eye appointment proved disappointing.  Inflammation was found in both eyes after having been told she was all clear and the eyes were quiet.  She had only been off the steroid drops for two weeks.  It was the news that we didn't want to hear (again). 

So both her Rheumatologist and Ophthalmologist have recommend that her blood be tested for liver function and if all goes well, we will increase the Methotrexate (MTX) today.  She started out in September on .3 mls; in December we had to move to .4 mls.  The blood work came back okay so tonight she moved to .5 mls.  Lucianna calls tonight, "Gatorade Night" because she gets a sippy cup of it after her medicine.  Currently, she is still able to take the MTX orally...but given the path that we've been on, I am not going to be foolish enough to say that won't change too.  After 30 days of the increase in the MTX, we are scheduled to see a specialist at the Wilmer Eye Institute at Johns Hopkins for a follow up to see if the increase in the MTX has helped her eyes.  It definitely helped her joint pain - you'd never know she couldn't walk much of last summer.  I hope it does the same for her eyes at this increased dose. So what if it doesn't help? What's next?  These are the just some of the questions I asked myself.

Nothing prepares you to be a parent to a sick kid.  To go through the ups and downs and roll with all the sucker punches.  I often wonder,  "Why?"  Why is my child sick?  Why do we even have to worry about her eye sight being compromised or possibly losing her sight altogether?  I will never know the answers as to why this sweet, funny and strong little girl must endure such a diagnosis.  One thing is for sure....I will fight to the death to do anything and everything I can to get her well.

No child should ever suffer in any way or be a victim to a senseless illness. I for one, won't sit down, I won't stop reading, I won't stop educating myself on the medicines, the case studies, the research, the advances, period.  I will be the best advocate I can for her and my hope is that it all pays off one day soon.

Lucianna's fightin' Mama


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