Mommy to a beautiful deaf 3 year old princess

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Katelynns Mommy

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Good afternoon,
our daughter is 3!
Her name is katelynn. She attend central institute for the deaf in st louis mo. Katelynn has a nucleas freedom implant on her right ear and a hearing aid on her left ear.
She is recessively learning how to listen and understand what our words mean,
i am going to give a little back round info to help understand katellyns situation.
She was scheduled for bilateral ci's dec 19 07. Her mri (for the plan for surgery) came back abnormal. That cancelled surgery. A team of doctors stated that she had lukedystrophy. After many more mri's. Ct's, abr, oae's and mra's her white matter had not changed at all.
So she then was given 1 ci only due to fear of her brain being sedated longer for two, that she would not wake up.
So katelynns is now diagnosed with cystic lukeodysenlopathy-non fatal white matter diease. Yeah, our baby is going to live!!! Wer are not sure if her language will ever really come for her to be completely oral, so we are using basic signs and talking to her. She is able to say ma ma!! Op,, for open, up hi, bye, and tries so hard for other words. If she can not say it she makes a sign for what is trying to say!

Now i am looking for help to try and teach her to potty train. She is not able to understand yet to tell us when she has to go, any one have any advice?

Thanks so much for your time,
i am such a proud mommy!
 
Great, thank you, we just bought the series one. The 13 movies.
I will look to see if it is in there or buy it seperate!
Thanks so much!
 
So katelynns is now diagnosed with cystic lukeodysenlopathy-non fatal white matter diease. Yeah, our baby is going to live!!! Wer are not sure if her language will ever really come for her to be completely oral, so we are using basic signs and talking to her. She is able to say ma ma!! Op,, for open, up hi, bye, and tries so hard for other words. If she can not say it she makes a sign for what is trying to say!
Click to expand...
I didn't know there were non fatal leukeodystrophies. That's the thingy that Lorenzo's Oil was about right? I have a white matter disorder myself (not MS and not leukeodystrophy)

It's awesome that you're now supplementing with Sign..... Are you still in Mo? Have you contacted the Mo School for the Deaf or the Assocition for the Deaf?
 
:welcome: to AllDeaf forum. Just stick with the signs so that your daughter can understand you better than trying to understand the words that you think she can hear better with CI. :hmm: Anyway, I hope you have fun reading and posting all the threads here. See you around. :wave:
 
Welcome to AD Katelynn's mommy!! I love her name!! Enjoy your stay here and any questions your free to just to post, rant or view on AD, there are some great people on here and hopefully you'll feel right at home here!!

x
 
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