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Post by Jackie on Jun 29, 2009 15:09:18 GMT -5
ok...thought I was right...got this email from my friend who had the surgery because of headaches worse than migraines and almost constant. Yes..chiari was wht I had corrected..decompressive laminectomy and craniotomy done by dr. ConeI am sure this is not what you are dealing with ...better correct that OT...
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Post by Jackie on Jun 29, 2009 8:27:53 GMT -5
Emily's speech has always been pretty clear. We didn't do much speech therapy...her's was more for language development because she didn't talk that much when she was y ounger....she would rather 'listen'. Her self talk was excellent, though...LOL.
You know my book I have never written about Em and DS...HURRY UP AND WAIT...well as she ages she seems to have much more to say. She is just not one of those people with DS who chatters all the time. I have often wished she did...but...must say when it's important and appropriate she does chime in. I think this is why others with DS like to be around her...because she smiles and listens...LOL.
Jackie
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Post by Jackie on Jun 29, 2009 8:22:26 GMT -5
I could be wrong but isnt the Chiari malformation what Denise...Stevies mom had surgery for before her death?
Jackie
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Post by Jackie on Jun 28, 2009 13:03:51 GMT -5
ok...who wants to go with me? ?
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Post by Jackie on Jun 28, 2009 9:29:27 GMT -5
oh do share if you can Susan! Congrats to Stevie!
Jackie
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Post by Jackie on Jun 28, 2009 9:28:07 GMT -5
Sorry to hear that Tammy. Emily has exactly the same situation...VSD and PDA that spontaneously closed and healed first yr of life. No cardiologist anymore...but has to take an antibiotic before any surgery or dental work for the rest of her life. However it does not intefere with her getting dental work done ever.
I do have a question...is your country on a National Health Care plan?
Jackie
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Post by Jackie on Jun 27, 2009 12:46:26 GMT -5
Happy you like your job...sorry about all the medical woes with Lewis. I hope all goes well and that nothing more pops up medically for you to deal with. What is your weather like? Ours is triple digits in Texas at the moment...aren't you in your winter?
Jackie
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Post by Jackie on Jun 27, 2009 9:09:55 GMT -5
Wow...thats cool Tammy. Makes a good case for some how to books for kids with DS on the computer , doesn't it.
Jackie
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Post by Jackie on Jun 27, 2009 8:02:36 GMT -5
cool pic CC...I am as excited as Em about seeing the movie.
Jackie
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Post by Jackie on Jun 27, 2009 7:59:49 GMT -5
I agree Laura...Brandi I think she might have gotten it wrong. I knew it sounded familiar and I think I have two friends who have had this surgery...their symptoms included severe unremitting headaches...and yes its very dangerous surgery.
Jackie
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Post by Jackie on Jun 26, 2009 18:37:26 GMT -5
ok..what IS this malformation?
Jackie
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Post by Jackie on Jun 26, 2009 18:36:22 GMT -5
Not to sure where the Bad to the Bone came from...LOL
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Post by Jackie on Jun 25, 2009 17:51:20 GMT -5
Just talked to Emily about Michael Jackson. She owns all his CDs and knows every word from Thriller. (We all used to call it "Filler" Emily style ;D)
Katie said it is just beginning to sink in with Em...just starting to process this. I am sure that there will be much late night self talk that Katie will just have to deal with. It might be tempered if indeed Letterman has Johnny Depp on tonite...but they might interrupt his show.
I have tried to tell her that she will probably see a whole lot of his videos and music the next few days and that will be a good thing. She WAS appalled by his life style ...but she liked him and his music too much to be totally turned off.
It will be interesting to see how she handles this. Maybe her art will be a good way.
Jackie
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Post by Jackie on Jun 25, 2009 9:35:00 GMT -5
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Post by Jackie on Jun 25, 2009 9:22:07 GMT -5
Thanks Kristin...this is helpful...hope to see you there.
Jackie
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