Before we start this post off.. please get your fundraising minds out..this mom needs your help! Okay to start with this. Kenadie's private insurance coverage was lost due her pediatrician not being able to see her. We finally found one we love and weren't using her private coverage only when we were traveling and so we had to make the choice. Dropping it. Now here comes the fundraising part. To see the docs we have to pay 200.00 out of pocket each time plus airfare! Mind you Kenadie's dysautonomia is rare so we can only see 1 group of md's in cleveland ohio. They dont take oklahoma medicaid either. So i dont know what we are going to do.
So speaking of cleveland. We seen the doctor on thursday. He was baffled as to what is going on. We are progressing in some areas with our dysautonomia symptoms (which you dont want to be). So he is really pushing for a muscle biopsy. He wants a live biopsy which is rarely done i guess. So he wants her to see this special gene doc then have the biopsy done while she is there in cleveland hopefully. Then wants to start her on a vitamin and amnio acid treatment to see if we can help the symptoms stay where they are and not progress. I have to say I am a bit scared when it comes to this.
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2 comments:
Can they try the vitamin therapy while they are waiting?
Tasha we can not do vitamin therapy before the biopsy bc it will throw it off. We actually had to pull her off her once a day vitamins for it. Which is retarded but um okay.
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