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Post by Emilysmom on Sept 19, 2010 21:44:32 GMT -5
I've posted about this on Facebook, but decided it could/should also be here. Since June, we have been dealing with significant vision loss with Emily. She has been to several different eye doctors, with a variety of "answers"..........and most of them are not good! The first doctor said Emily has "lost her central vision". But, he said it was because she had cataracts and needed surgery ASAP. I thought it was odd, because I assumed that I would have actually been able to SEE cataracts. But, I didn't argue with him and took her to a cataract specialist who said Emily definitely did NOT have cataracts. She didn't seem to know the reason for Emily's vision loss and referred her to a neuro opthamologist. He was also totally baffled, but ordered an MRI of her brain. This has been weeks ago, and he called back to tell me that the MRI was abnormal, but didn't seem to understand WHY. He said there were metabolic changes within Emily's brain that have nothing at all to do with Ds.
She has also been tested for a genetic disorder that we have recently learned about that runs in my family called Lebers Hereditary Optic Neuropathy. It is NOT the diagnosis I want, for sure! ! ! So, we are waiting for the results of the genetic test and waiting for the doctor to consult with his colleagues about the abnormal MRI. And, we are headed to a doctor in Columbus Ohio on Thursday of this week.
Please pray that Emily's vision returns. Thanks so much, Susan
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Post by lespring on Sept 20, 2010 0:37:34 GMT -5
Oh wow! We will certainly be praying for Emily this week!
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Post by Pat on Sept 20, 2010 5:27:44 GMT -5
You have our prayers from PA. Remember, some of us don't do facebook, so keep us informed here too, please. (((HUGS))) my friend. Nothing is impossible! Pat
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Post by Myria on Sept 20, 2010 6:54:23 GMT -5
praying for Emily!! Hoping for the best at your Dr's appointment, please keep us posted.
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Post by logansmom on Sept 20, 2010 7:01:38 GMT -5
She's in our thoughts and prayers.
Kim, Logan (Ds, 7) and Carson (5)
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Post by faithhope on Sept 20, 2010 7:46:10 GMT -5
We will be praying for Emily and please keep us posted. (((((((((((((((((((((HUGS))))))))))))))))))))) Love, Jessika
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Post by Jackie on Sept 20, 2010 8:10:33 GMT -5
Susan I am glad you finally posted here ...because ..yes...there are a lot of people who are not on FB. I think it will be nice to have UNO with you as you travel down this new road...and maybe...everything will still turn out OK. You know we are all praying and thinking about you and Emily in this...and hope you will keep us updated here too.
People on UNO have always loved you and your advice and the stories and gorgeous pictures of Emily and all of us will be in this with you.
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Post by mg12061 on Sept 20, 2010 8:18:32 GMT -5
I'm so glad you posted here. I'm not on facebook. Unomas has such great prayer power. Many many prayers for your family. Mary Grace
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Post by kg91207 on Sept 20, 2010 9:54:32 GMT -5
Oh my, LOTS of hugs and prayers. I know personally, I would be willing to lose a lot, but not my vision. I love to see things in the world and read and of course admire my princess, so that would be so hard!!!
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Post by Googsmom aka Jennifer on Sept 20, 2010 10:50:31 GMT -5
Susan, we will be Praying for all of you. {{{{{{HUGS}}}}}}
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Post by CC on Sept 20, 2010 11:36:06 GMT -5
You got it, MEGA prayers going out from New Jersey CC~
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Post by alisonzmom on Sept 20, 2010 12:26:12 GMT -5
You got it Susan! Emily has been and continues to be in my prayers!
Barb
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Post by rlm08 on Sept 20, 2010 15:30:34 GMT -5
We are thinking of you & Emily and hoping that all turns out for the best for her.
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Post by Connie on Sept 21, 2010 6:14:20 GMT -5
Wow!! How did I miss this on FB? Prayers and Hugs to you, Terry and Emily. Thanks for letting us know
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Post by sd112170 on Sept 21, 2010 10:41:59 GMT -5
Praying here in GA!!
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