Wednesday, September 19, 2012

Float like a butterfly - sting like a bee!


Dear friends and family,

A short update on Lucianna's Uveitis progress.  Her normal pediatric ophthalmologist is on vacation this week, so we used this opportunity to get her an appointment with a Uveitis specialist at the Wilmer Eye Institute, (which is next door to Johns Hopkins Hospital), in Baltimore, MD.  After a grueling afternoon of waiting, waiting and more waiting, (her Daddy took her), we learned nothing new about her condition.  The doctor today just reiterated what we already knew:  her Uveitis is severe and we need to continue on hourly eye drop treatments and nightly dilation drops until further notice.  He agreed that we are on the right path with our current ophthalmologist, Dr. P., and for us to continue seeing her since she was much closer to our home. Daddy shared that Dr. P.  has equipment that is better suited for kids, newer and an appointment to see her certainly doesn't take a half day like our Hopkins visits normally do - so we are sticking with her for now. (She's pretty great by the way - another bonus.)  We are glad we took the time to go to TWEI though.  We never want to look back on this time 5 years from now and think that we should have gotten a second opinion.  Now we know that we are doing exactly what we need to be doing.

Currently, her treatment course is hourly steriod eye drops, one drop nightly that dilates the eyes, Naproxen - 3 times a day and Zantac - twice a day.  This Friday, (or Saturday), we will introduce Methotrexate.    Lucianna is the strongest kid I know.  I do not say that as her parent, but as an adult who has had a great deal of exposure to kids of all ages throughout my life - Lucianna is my Mohammad Ali.  She is a fighting machine.  She has the fiestiness of her Mama and the determination of her Daddy.  She amazes me everyday.

I learned some disheartening information about the other 299,999 children who suffer from this JRA, there are 10 states that DO NOT have a pediatric rheumatologist at all.  

Today, I am grateful that we live in an area where access to a pediatric rheumatologist is not an issue for us.  I can't even imagine the hardship for families that have to fly to their appointments or drive very long distances just to see a doctor.  See the chart below to fully understand the shortage.  (Note to self: "encourage up-and-coming college students to study pediatric rheumatology!!!)

Purple - 0 , Dark Green - 1, Light Green - 2, Orange - 3, White - 4 or more.

Ending on some of Mohammad Ali's great quotes:

"When you are as great as I am, it is hard to be humble."

"I'm so fast that last night I turned off the light switch in my hotel room and was in bed before the room was dark."

"It isn’t the mountains ahead to climb that wear you out; it’s the pebble in your shoe."
“If my mind can conceive it, and my heart can believe it - then I can achieve it.” 

Lucianna's proud Mama

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