THIS IS MY STORY . . .

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Apr 20, 2013
*Sneak Peek*
 

Can you guess where we went today? πŸ™‚  It was such an incredible experience that we’ll never forget!

But…..I’m only gonna show one picture for today! πŸ˜‰  You’ll just have to check back next week for more pictures! πŸ˜€

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I had another great Genetics appointment this morning!  Dr. S gave lots of good recommendations/tips on how to better manage Ehlers-Danlos Syndrome.  She also had us meet a Cincinnati Children’s expert on mitochondrial disorders.  He is the dr. who will be looking at my mtDNA to check for deletions, duplications, etc.  All the doctors I saw this past week had a conference together to talk about my symptoms and all the possible diagnoses.  They said I’m a very complicated case. :  They’re still considering Mito, but they also said all my symptoms could be a form of Dysautonomia..  So Dr. S gave the names of a couple of experts on this particular condition who practice in Oregon. πŸ™‚  I have lots of appointments coming my way when I get home!
 
 
Me and my genetic counselor, Krysten. πŸ™‚  She is so so sweet and a big help!
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ο»ΏWe had our last dinner at the Ronald McDonald House this evening!  Sob!  I’m gonna miss all the wonderful families we’ve come to know!  I’m especially going to miss this super cute 2-year-old who’s waiting for a bone marrow transplant.  He always has a huge smile and such chubby cheeks!  Ronald McDonald came to see all the families in the dining area. πŸ™‚  He’s so good with kids!  I was able to get one last picture with him.
 

He gave me a sticker. πŸ˜€
 
Post written byKerissa

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