Cdnpearly's Blog

Pearl's musings

And the results are in… December 9, 2011

Filed under: stargardts,Uncategorized — cdnpearly @ 4:30 pm
Tags: , , ,

We went to UCLA on Wednesday.  It was “a day”.  An up and down kinda day…a good and bad sort of day…

Indulge me as I backtrack and digress for a moment.

For over a month we have been awaiting insurance approval for genetic testing.  After leading us to believe that authorization was imminent and would be completed before Wednesday, Monday they denied it.  So…that was bad.

BUT, we have the BEST insurance broker ever (an aside here for anyone looking for health insurance and phenomenal customer service:  you must call Diana Lewallen Higgins.  Simply put, she is wonderful and knowledgeable.)  She talked me down from the emotional ledge, made a few calls and recommendations.  AND our medical professionals at the Doris and Jules Stein Eye Institute UCLA also jumped in to help turn this decision around.  They have restored my faith in the medical/insurance industry.  So that’s good, right?

The status is still denied, but it is “investigatable” –is that even a word???

Back to “the day”…

We met with the genetic councilor–Ari–an exceptional woman with so many answers for our many questions about Stargardts and cone dystrophy and genetics.  Together we decided to gather DNA and store it till the insurance gets resolved.  This means we don’t have to make another trip to LA, also good.

Next we met with a UCLA Low Vision Ophthalmologist, another impressive woman–so thorough and patient.  She assessed Meg’s vision and placed her at 20/200 without corrective lenses.  This is good and bad…good because Meg’s eyesight is the same as it was in August.  Our conclusion is that the acupuncture contributed to regaining some vision–we know that she was losing eyesight rapidly prior to our West Virginia adventure.  Maintaining these numbers over 4-5 months is good, although 20/200 is legally blind.  It’s interesting what becomes good news, isn’t it?

Dr. Chun developed corrective lenses that will bring Meg’s vision to 20/160.  But the best part of our visit with Dr. Chun was “the telescope”!  This gadget is about 3 inches long, is light weight and can be worn as a pendant (an accessory!  That’s good!).  It is 8x.  Meg is so jazzed about being able to see far away things again!  That’s beyond good…I’ll venture it’s GREAT, in fact!

We don’t see the doctor again until May.  We will likely try to squeeze in another West Virginia outing before that appointment.  It can’t hurt, right?  And it won’t be winter!  So that’s GOOD!

Next was the blood draw for DNA extraction.  We headed over to the lab.  Meg was apprehensive.  She’s not a needle or blood kinda gal.  Her anxiety was evident–especially to the student phlebotomist on her first day!!  We respectfully requested a seasoned professional for Meg’s first experience.  Marie was awesome!  An added bonus, a man popped in our cubicle to cheer up Meg…turns out he’s the voice of Donald Duck–only in Los Angeles!!  In seconds the sample was drawn and Meg incredulously asked, “Is that it???”  So it was good to have that behind us!

We drove home…cruising up the coast on Pacific Coast Highway, through Malibu…then…Boom!  We got hit by a car!  Surreal!  And then, the car took off!

Hold on a second!  No one gets to hit us and run!  So, Dennis chased the car down while I got on the phone with 911.  The driver then hit another car, swerving all over, and kept going.  Eventually she pulled over and 2 other drivers joined us in subduing her and removing her keys till the Sheriff arrived.

So, it was bad that Dennis’ car is now in the shop getting $3750 worth of body work done.  But, it was good that no one was hurt or killed by this [allegedly!!!!] drunken fiend.

We were able to drive home safe and sound.

So, overall I’m going to give “the day” a solid 7.5/10

We’re ready to relish the holiday season and all that brings.  Hope you are too!

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9 Responses to “And the results are in…”

  1. Thalia Chaltas Says:

    Okay, I read the whole thing, going with all of it as heading toward good, and then I got to the hit and run and let out an expletive here at work. I mean, really??? Life is full enough for you all, already!

    I am happy to hear that Meghan’s vision has not degraded more, and that you have a good posse of people assisting… I wish I could do more, but know I am cheering from way over on the sidelines. And sometimes swearing for you, too. 🙂

    Much love!

  2. Ellen Borden Says:

    Looks like Dennis was very convincing with the rental car company. Meghan was very excited to show us the Mercedes he’s driving around in. Very nice!
    I’m glad that overall things turned out good with Meghan’s appt. I’m sure the insurance investigation will come out in your favor!! 🙂

  3. Nothing mundane around you guys.. Praying all goes well, little steps forward are always better than the alternative.
    Love, you guys.. Merry Christmas,,,and…most assuredly a Happy New Year.
    Jake and Beth.

  4. Kathleen Says:

    We are so glad you’re all home safe and that you found some kind and competent specialists in LA. Merry X-mas friends,

  5. mj monaghan Says:

    I wish blessings and peace for you and your family!


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