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January 4th, 2009, 12:35 PM
SGoodknight's Avatar Newbies
Join Date: Jan 2009
Location: Falcon, Co
Posts: 3
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Hey All,

New to the forum! I just posted in the Special Needs section! I'm happy to have found this one too!

My name is Susan and I have 3 children. 2 of them are N.T. and then Blake has many DXs but one of them is EVAS. That is Enlarged Vestibular Aqueduct Syndrome. He only has this in the right ear FORTUNATELY! He is currenlty Moderate Sloping to Severe (90% loss in higher frequency). At 1000mghz he hears clear but before and after that he drops off the charts!

When he was just 2 years old we KNEW he was hard of hearing. BUT, for some reason the ENTs refused to due further testing out of the sound booth. Well, I'm sure you all know just how BAD a 2yr old does in those! LOL. It was a long fight but mom won!

It was when he was 3 he got ear tubes and then it was at 4.5 that we moved and I found new Drs in a different state. They did a sedated ABR and found the loss. He then went for the MRI and CT scans to determine why. It was the CT scan that showed the EVAS and was then noted as a birth defect. Fortunately EVAS is a birth defect and we had the proof so his insurance has to pay for the hearing aid!

Because the lack of proper hearing he is delayed in Speech. He's been in speech since he was 2 years old but it was only after he got his aid that he began to speak clear. When he was 4.5 we could only understand 1 out of 10 words he spoke so it was very hard on him. Now he is nearly 9 and doing wonderful. We can understand everything but he only comprehends that of a 7yr old at this time. He is consistenly getting better as time goes on and he gets 90 minutes a week of speech in school.

Looking forward to getting to know you all!
Susan Goodknight
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January 4th, 2009, 03:17 PM
quietsong's Avatar Just Another Slacker Mom
Join Date: Aug 2006
Location: Missouri
Posts: 42,367
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Welcome to the board, Susan! I'm glad you've joined us, and am sure your experience can add some wonderful insight to those of us a little earlier on the path with our hearing impaired or speech impaired kiddos. Good for you for fighting so hard for your little boy and what you knew was a problem! So many doctors can be hard to get through to, and I know it can be a challenge to get what you KNOW is right for your kids. I'm so sorry you had to fight so hard to get him the intervention he needed. It sounds like he's doing wonderfully despite the start he had, though!

I'm Kel. I've got 2 boys, 2.5 years and 9 months. My 9 month old was born with congenital CMV, a nasty viral infection, and was in the hospital for a couple months fighting it and some complications that popped up with it. Somewhere in there, he lost his hearing. (He had passed his newborn hearing screen, but failed a follow up screening 2 months later.) His ABR diagnosed a bilateral profound sensorineural loss ... in other words, he is deaf, naturally hearing 90dB or louder but nothing less than that. We're in a world of intervention at the moment to find the right option for him!

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January 6th, 2009, 09:14 PM
ZaydensMomma's Avatar Aaron Nicole
Join Date: Nov 2006
Location: Indiana
Posts: 16,454
Hello! Welcome to the board!!!

You are a fighter!!! Good luck with your son!

I am deaf myself.

Age 36 with PCOS, poor ovarian reserve (.197), and blocked left fallopian tube.
We are TTC our 2nd blessing baby.
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January 9th, 2009, 08:32 PM
RainyDay's Avatar Platinum Supermommy
Join Date: Apr 2007
Location: Cleveland, OH
Posts: 12,488
Welcome! I'm Ranee, and my 3 yr old, Sean, has an unofficial diagnosis of speech apraxia. I look forward to getting to know you.

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