Each week I get a few emails, from all over the US... either telling me their personal Chiari story or their child's. And most, if not always they have the same story to tell me how they have had to fight tooth and nail with doctors, just to get to where they are now. That they get pushed from doctor to doctor... someone trying to figure out answers, of why they or these kids are having these symptoms. And when you finally get into the "right" hands, I know their feeling.... its this huge sigh of relief, that finally someone gets it! But just because you find that doctor that helps... doesn't mean the battles end. I just dealt with one the other day... an anesthesiologist of all ones, questioning the doctors orders for MRIs for my other two kids. And you go to explain the whole story... which takes awhile, because its a lot of info, and usually a lot for one to comprehend, and they look at you like your crazy. Because of the ordeal I had, ASAP.org sent me brochures, and other hand out info, to gives to these doctors, nurses... and everyone else we meet. And the biggest down fall.... is Kaylie will deal with this the rest of her life! That's why it's my job to make sure she is set up with the right doctors, hospitals... so as she gets older... she isn't being floated around. That was one of the reason's why I chose Rekate, who does adults & children... because she can grow with him and his colleagues ... that way, time she is 18, she isn't being pushed out of a pediatric clinic, searching for a new doctor because of her age. I wish people could read these emails I get.... because after reading so many, it makes you wonder what the medical community is missing. AWARENESS.... is the key point, and only way it's going to be heard!!!
*If you ever contact me, about your story, and would like for me to share it on Kaylie's blog, let me know. I will add it on here... to show that these kinds of stories happen all over. Names can be blacked out.... but the awareness is shown. If this does happen, I will probably make a special section on here just for that.
Sunday, July 22, 2012
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