Monday, July 16, 2012

Apparently, you are not the youngest CCHS baby, in fact, Elise share the same birthday with you.

Ok, I was told that this is a "RARE" genetic disorder but... guess what?  Mama found out today that Elise Kohnen from St Louis, MO shares the same birthday with you.  Though, she's not as severe because she actually got to go home.  On May 8th is when she choked while drinking milk and was sent to the ER and found out that she has CCHS a day before we did find yours out.  She was added to the CCHS group today and she just got her trach on 7/9/2012.  Though, she is only on the vent when she's sleeping, when she's awake, they take her off the vent. 

Guess what, mama have been suspecting that Room 15 is the other kid with CCHS, true enough, today, mama found out that it is them.  Though, they have not gotten their mutation numbers yet, so, maybe the baby doesn't have it.  The weird thing is... the baby was born in the same hospital as you, Plano Medical Center and the baby is also an Asian, last name Zhang.

That really makes me wonder if this is really hereditary? I really believe that it's something that I got hit or pass through, really... not living in denial but how would there be so many lately?  I know that they said kids that has post mortem done that was declared with SIDS have the Phox2B genes tested positive.  I think this is starting to be not that rare anymore. I personally think that this genetic testing should be part of the prenatal check in order for families not to go through what the CCHS mom and I have to go through.

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