Thursday, November 21, 2013

Another reason to be "thankful"!

Happy Thanksgiving to ME!

Dear Friends and family,

Thanksgiving is exactly one week from today and we have a lot to be thankful for in our house!  Yesterday, Lucianna had her 3 month check up at Wilmer Eye Institute at Johns Hopkins Hospital.  We are pleased to report that once again, she has had an improvement in her stubborn left eye.   

Lucianna is all smiles on the long and 'bowring", 90 minute ride there because of a special goodie bag she received.  A classmate's mom, and family friend, Sarah, gave Lucianna a thoughtful surprise of her favorite things, my little pony stuff. It saved me!  I was really touched by this gesture and clearly Lucianna was beaming.  (Thank you Sarah!)

So we have our appointments down to a science now.  The underground parking is never very easy, but I snapped this shot as we walked out of the garage.  How sweet is she clinging to her Daddy's leg?  We are usually running to the elevator because traffic and construction is never predictable and we are always late!

We waited two hours to see the doctor.  Yes, two hours.  This is the usual wait.  One time we had to wait 3 hours, a pretty unrealistic wait for a 4 year old.  We saw both a newbie doctor and then the associate professor that we always see.   Both doctors indicated that Lucianna still has some inflammation cells in her left eye (considered "trace") but that she has slightly improved since the last visit.  That's all we needed to hear!  Our goal is to get to no cells, but at this level she is not suffering eye damage, thankfully.  She is not considered to be in a "medically induced remission" until her eyes are totally clear - so that's the goal.  Unfortunately, her Uveitis specialist told us that he is taking a job in Philly, so we will have to see someone new.  (He's been with Hopkins 22 years.) The new doctor comes highly recommended by him.  I just fear a longer wait now that all his patients will transition to her.  The good thing is though, Lucianna is painfully shy around new people, especially men.  Maybe a female doctor will minimize that.  So we are continuing her on the Methotrexate at .7 mls (along with Folic Acid and Meriva Cucumin),  and return in February for our follow up.  I am hoping in February we get the news we are anxiously waiting for:  "Her eyes are all clear."  Until then, we are very grateful and happy that she headed in that direction!

Lucianna's next check up is in January with her Rheumatologist also at Johns Hopkins.  I will update you again after that appointment.

Wishing all of you the most wonderful holiday season!

Lucianna's Mama

There were never such devoted sisters...

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