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Post by char on Sept 21, 2010 11:31:29 GMT -5
Many prayers are going out from Tucson. Hugs and love also being sent.
Char
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Post by Chris on Sept 21, 2010 17:41:13 GMT -5
Praying for Emily. You must be so scared.
Chris
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Post by sd112170 on Sept 21, 2010 20:00:49 GMT -5
Great Big hugs and prayers that you will have a peaceful night tonight.
Stacy
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Post by Emilysmom on Sept 23, 2010 6:41:41 GMT -5
Well, it's official. The doctor called on Monday evening with the diagnosis we did not want..........Lebers Hereditary Optic Neuropathy (LHON). Not at all what I had hoped!! Emily and I are headed to Columbus today to see a specialist tomorrow and I'm hoping she has MUCH better answers than the doctor at Vanderbilt did. He is one of the kindest men I've ever met, but he insists that there is NOTHING that can be done and the vision loss is rapidly progressive. Not accepting that for her!! Emily, bless her dear heart.........is EXCITED about our trip and about staying in a hotel with an indoor pool and a fitness room!! She is ok with seeing one more eye doctor (seems like that's all she has done for months!), as long as their is no IV or lab sticks. Crossing my fingers that I told her correctly that they will not be doing that!
Please continue to pray and BELIEVE that God will restore her vision. Thanks so much for loving my girl!! ! ! ! ! !
Susan
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Post by wrblack on Sept 23, 2010 9:23:39 GMT -5
Bummer. But at this point, not a big surprise. Hope you have a useful trip to Columbus and Emily enjoys the trip and the pool. Maybe early days Emily can help you deal with all this, then later you can help her deal. All of us here love both of youse. -- Bob
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Post by Debi on Sept 23, 2010 9:50:57 GMT -5
What a blow, Susan.. I am sure that you are reeling as all of us are for you.
I hope and pray that you get some happier answers from Columbia. Bob said it best.. we love both of youse!! Always in our thoughts for both of you.
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Post by Renee' on Sept 23, 2010 11:34:52 GMT -5
Susan I hope you find the answers. I will pray for her and you. For some reason this made me cry. Lauren's vision is becoming worse. Over the last year she went from 20/100 to 20/200. She says she can't see without her glasses. It is time to take her back and I am scared to see where she is now. I know still can so miracles so I pray Emily enjoys the trip and the answers are good.
Renee
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Post by sd112170 on Sept 23, 2010 12:41:44 GMT -5
PRAYING HERE IN GA!!!!
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Post by CC on Sept 23, 2010 18:49:42 GMT -5
Oh Man Susan I am so sorry to read this Praying you get some good news at the new Docs. CC~
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Post by laurasmom on Sept 23, 2010 23:49:23 GMT -5
Susan I am so sorry to read this. I had been praying that the answer was something else, anything else. I am hoping the specialist can shed some new light, and new ideas on this for you, and in the meantime, our love and prayers are with you all.
Sharon
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Post by Myria on Sept 24, 2010 6:28:13 GMT -5
oh Susan I am so sorry to hear this! I am going to continue praying for ALL of you, and especially that God will restore Emily's vision. Have a safe trip and I am looking forward to hearing good news from this new doc~ (((((HUGS)))))
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Post by mg12061 on Sept 24, 2010 11:02:16 GMT -5
I'm so sorry to hear this news. She's very lucky to have a mom who will not accept this and push forward looking for a better answer. I learned this with Kathleen's disease that no Dr. is perfect or know everything. Even the specialists have specialists. Many neurologists had not eve heard of Moyamoya so it was imperative to find someone who specalised in this area. Many prayers and positive thoughts are with you.Please keep us posted. Mary Grace
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Post by rlm08 on Sept 24, 2010 15:34:52 GMT -5
I have no words...my heart goes out to you. I agree with Mary Grace, she is lucky to have you who will not stop with the first answer.
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