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connexin 26 - humor me

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Hi Alison. My son, , went through the genetic counseling/testing when he

was an infant and his hearing loss was diagnosed. The cause of his loss was not

determined. He did not have the connexin 26 gene. We have no family history.

We had a normal pregnancy, two weeks past due date and C-section. No illness

during pregnancy. It's a mystery but I don't dwell on it because it doesn't

make any difference in what we do.

I do remember considering if I wanted another child. If it was discovered that

we had the connexin 26 I don't know how that would effect my decision. I didn't

want another child with hearing loss but the more I thought about it I realized

there was always that chance whether we had a percentage number or a cause for

's loss. Even though he didn't test positive for connexin I still felt that

my second born could have a hearing loss. Just because we didn't know the cause

didn't mean there wasn't a chance that hearing loss would come up or something

else. I suppose there is always a chance that something could happen and we

usually don't think about that when we're pregnant. At least I didn't.

My second son passed his newborn hearing screen. He still wasn't talking at two

years old and had an ABR. He passed that. He started speech therapy. He was

diagnosed with verbal apraxia. It was so strange that I had a deaf son that

wouldn't stop talking and a hearing son that had no words and picked up sign

faster than ever did. Turned out the apraxia wasn't an accurate diagnosis.

He was just severely speech delayed and had some oral motor issues. He's doing

well now. He also has eczema and has numerous food allergies.

I joked this weekend when I went to a family celebration. Most women were

carrying around small decorative purses. My bag was bulging with a camera, CI

back up supplies, batteries, epi-pens, benedryl, albuterol, and two pieces of

homemade egg-free birthday cake for my allergic son. I think the only thing for

me was a small lipstick!

So you never know. I have two " special needs " children with no family history

or known cause for their issues. With my odds I get worried what would happen

if I tried for a third!

My feelings about my son's hearing loss changed from the initial diagnosis to

now. He is amazing and hearing loss does not seem like such a terrible obstacle

for me as a parent.

K

(5.5 years, CI and hearing aid) and (4 years, hearing and talking)

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