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Re: Dear Suzanne

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,

No need for an apology! I, myself, felt bad about pre-emptively using this

forum to try to get information and tried to go privately " offline " with those

from the forum who offered up their thoughts, ideas, etc.

To update everyone on where we stand:

Tomorrow, will have a rigid broncoscopy and have a tracheotomy

installed, if the surgeon feels that makes the most sense after seeing what he

sees

with the bronc.

I met with neurology today and they took a full history including CMT. They

are referring me to genetics and want to test for CMT, but per our

request have agreed to test either myself or my mom so he doesn't have to endure

yet another test/stick- it is with handling and testing that he gets agitated

and goes into an O2 desaturation episode. So, the least I can do is get the

blood test for him, because if I'm not a carrier then we can rule that out

for him.

Thank you again to all those who offered up websites and doctor's names!

I will keep you posted.

Suzanne

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