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Forum: Children with Special Needs

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  #1  
January 24th, 2010, 02:02 PM
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hi laies, I thought I would lkrk over here and then decided to post. My youngest dd Avery has congenital cataracts. She has had them removed but she was older then most babies that get it done. She was 4 1/2 months old. She also has nystagmus. Because of this she is a bit behind in motor and social skills. we are in ECI though I think they are a bunch of morons at this moment. I hope that changes. The school system is stepping in now to help her though and I think they will be of much more use to us!
Anyways I have posted on the vision board but its super slow over there so though I would check in here too!
Oh she can see about 14 inches right now. We don;t know if this will be as good as it gets or if she will have normal vision as an adult.
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  #2  
January 24th, 2010, 05:37 PM
quietsong's Avatar Just Another Slacker Mom
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Welcome to the board! I've seen you around the vision board, since it's also the hearing board, and you're right... it's pretty darn quiet. That both sucks and is a good thing, LOL, since I don't WANT there to need to be too many moms over there, you know? Or here either.

I'm Kel, and my youngest boy Danny is deaf. We got him cochlear implants that were activated nearly a year ago, and he's progressing slower than most bilateral kids, but still progressing! He was born with congenital CMV, a disease that attacks the brain of unborn babies, and he has some other delays and mild low muscle tone.
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  #3  
January 24th, 2010, 08:13 PM
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thats amazing that he is hearing now. Even if its not perfect. I know when Avery had her first surgery, it was immediate we saw a change in her. I know vision/ hearing are different but the same too lol.

I get what you mean about being active on the other board. You want it and don't lol. I am a member of a yahoo group specifically for babies with cataracts and that has helped a ton.
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  #4  
January 25th, 2010, 06:47 AM
Daisyfields's Avatar Platinum Super Mega Mommy
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Welcome to the SN's board, it's much slower than it used to be but I'm glad you found us.

My name is Chantelle, I have 2 boys that are SN's, one is in OT, doesn't eat, just drinks Alimentum Rx formula. Then my other son has developmental delay, fine/gross motor skills, speech & hearing issues (born legally deaf)... we're in E.I. for my 2 year old & have E.I. for my 3 (almost 4) year old. Have faith b/c I was told that my almost 4 year old would never talk or walk, he does both. Hang in there. You sound like you're doing everything you can.

HUGS
~C
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  #5  
January 25th, 2010, 07:59 AM
quietsong's Avatar Just Another Slacker Mom
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I agree, vision and hearing are so different but they're both such critical senses that there are a lot of similarities when it comes to losses. I love to hear how well she is doing, all the changes you see in her! I know it was the same with Danny, almost like he became a whole other baby when we finally got his cochlear implants turned on. I've got a yahoo group for parents of CI children as well that has been huge to me.

I agree with Chantelle...all you can do is hang on, do all you can, and wait for what will come to come. With as far as she has come in such a short time, I think there are great things in store for Avery!
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  #6  
January 25th, 2010, 03:01 PM
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Welcome to the SN board! I'm glad you found us. What a fighter you have and so cute!
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  #7  
January 25th, 2010, 05:48 PM
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aww thanks ladies. You all are so sweet!
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  #8  
January 25th, 2010, 09:34 PM
stacyp's Avatar Mommy to Andrew & Luke
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Hi & welcome to the board.

I'm Stacy, Mommy to ANdrew (3.5) & Luke (1.5). LUke was born with Trisomy 21 (Down syndrome).

You will love these ladies. They are wonderful & an excellent source of support.
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  #9  
January 26th, 2010, 06:56 AM
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thanks for the welcome! Your boys are too cute
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  #10  
January 26th, 2010, 11:58 AM
stacyp's Avatar Mommy to Andrew & Luke
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Oh thank you. Your girls are gorgeous!
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