Toddler 2 months post activation

AshJagla

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Hi guys, it's been a couple of months since I posted here. We discovered our little girl, Zoe, was Deaf when she was 13 months old. She was implanted towards the end of Feb and activated on the right side the 8th of March and the left on the 28th of March. We are continuing to sign with her although she has recently started to prefer vocalizing "ahhh" for things she wants. We praise her and allow it, but continue to sign to her as often as we can as beginners. Anyway, we're super excited, she even more recently has started to hum and coo on her own in her room while playing by herself (she is 21 months old now). I think she still needs a bit more boost in the high frequencies as she doesn't seem to recognize Shhh or Ssss yet, but we're getting there!

I hope everyone that I have talked to over the past 8 months is doing well.

Alex - if you happen to see this, how are you doing? Your surgery and activation day was so close to Zoe's, I've been thinking about you and your CI progress. Hope everything has been wonderful for you :)

Videos (no captions, sorry, I don't know how to do that):
This is her first activation, she claps when I talk to her
[ame=http://www.youtube.com/watch?v=Pw3nvR2-rEk]Zoe's Cochlear Implant Activation - YouTube[/ame]
And this is her a couple of days ago, she's playing in her room cooing to herself. At the end where she puts her hand up to her neck in response to me saying "HI" it sounds like she says "hi" in return, but I think it was more coincidence than her copying the sound, it's still exciting though! (ignore the mess please)
[ame=http://www.youtube.com/watch?v=vUUMP3fH6wI]Deaf toddler talking 3 months post surgery - YouTube[/ame]
 

cdmeggers

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she's such a happy and cute little girl! aww! Looks like she's doing well with the implant so far. :)
 

deafdyke

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Just so you know, S, th, and other speech sounds are really hard for HOH people to hear. Even audilogically HOH people can't hear them with aids....
It's great that she's responding well with the CIs thou....that means that she may not need super intense speech therapy/a speech school placement.
The important thing is spoken language......and many deaf kids can benifit from a supplemental spoken language approach...(ie speech therapy as an auxiriallay service, rather then as the be all and end all, the way it is with the oral/speech schools or an auditory verbal therapy approach)
 
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Just so you know, S, th, and other speech sounds are really hard for HOH people to hear. Even audilogically HOH people can't hear them with aids....
It's great that she's responding well with the CIs thou....that means that she may not need super intense speech therapy/a speech school placement.
The important thing is spoken language......and many deaf kids can benifit from a supplemental spoken language approach...(ie speech therapy as an auxiriallay service, rather then as the be all and end all, the way it is with the oral/speech schools or an auditory verbal therapy approach)

There is absolutely no correlation between HA user's inability to hear SH and S and a CI user. A HA user can simply lack the ability to hear consonants in that frequency range. A CI user does have that access to that frequency range. Zoe is simply developing her hearing at this stage.
 

deafdyke

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There is absolutely no correlation between HA user's inability to hear SH and S and a CI user. A HA user can simply lack the ability to hear consonants in that frequency range. A CI user does have that access to that frequency range. Zoe is simply developing her hearing at this stage.

i'm saying HOH. Most HOH (including functionally HOH which is what CI kids are) may have issues in that area. Their listening levels tend to be at MILD levels at BEST Besides, there are STILL quite a few CI kids who may not even get into HOH listening levels. Hearing levels with CI do vary tremendously. Not every kid with a CI is going to be a listening superstar....even today. (as is evidenced by many students at Signing Schools for the deaf)
 

AshJagla

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CIs DO give access to those sounds, if she isn't able to hear them now we can bump up her map in the higher frequencies which is the norm for children according to my audiologist. The are softer sounds that require more focus to listen to, but it absolutely possible. Whereas HA HOH users just may not have access to those frequencies, end of story. Zoe does 1 hour of speech therapy, 1 hour of developmental therapy - hearing service, and 30 mins of AVT per week. Starting next week we will also have a couple of hours of ASL tutoring for the family too :) It sounds like a lot but right now her therapies are play based and she enjoys them.
 

deafdyke

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CIs DO give access to those sounds, if she isn't able to hear them now we can bump up her map in the higher frequencies which is the norm for children according to my audiologist. The are softer sounds that require more focus to listen to, but it absolutely possible. Whereas HA HOH users just may not have access to those frequencies, end of story. Zoe does 1 hour of speech therapy, 1 hour of developmental therapy - hearing service, and 30 mins of AVT per week. Starting next week we will also have a couple of hours of ASL tutoring for the family too :) It sounds like a lot but right now her therapies are play based and she enjoys them.

Does the audi say that she's responding like children who can hear those sounds? If so that's a good sign!
 

AshJagla

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The audiologist says she's responding like a typical toddler with cochlear implants. They bumped her evenly across the board at first, she was hearing exceptionally well in the low and mid frequencies (voice detection at 10db), but we've determined she needed an extra boost for the high frequencies at her last appointment. I believe she hears them now, she's now responding to shh but not very well to ss, I think we will likely give them one more bump at our next appointment and she should be set. A month ago she would sit in her room in silence, after we bumped her high frequencies last week she has started to coo and hum on her own while playing in her room. Progress, but it takes time and careful mapping.
 

deafdyke

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The audiologist says she's responding like a typical toddler with cochlear implants. They bumped her evenly across the board at first, she was hearing exceptionally well in the low and mid frequencies (voice detection at 10db), but we've determined she needed an extra boost for the high frequencies at her last appointment. I believe she hears them now, she's now responding to shh but not very well to ss, I think we will likely give them one more bump at our next appointment and she should be set. A month ago she would sit in her room in silence, after we bumped her high frequencies last week she has started to coo and hum on her own while playing in her room. Progress, but it takes time and careful mapping.

That's good....at least one less thing to worry about right? Like you're hoping that her speech issues will be manageable with the resources from a typical dhh program/school, and you won't have to do an intense speech school (oral preschool/kindergarten) approach, right?
 

green427

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Sounds awesome.

What's also great is the fact that you are very involved in the whole process instead of sitting back and hoping things will work themselves out.

As a bilateral CI user, I envy the youngsters these days...they have many options and awesome technology to choose from.
 

AshJagla

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We live about 3 hours from the nearest Option School (CID/Moog in St Louis), so yes, I would rather be able to get her the resources she needs closer to home without having to pick up and move. We are also getting ASL tutoring this summer and hopefully next school year, and then when both my little ones are in school I'd like to start the ASL terp course at John A Logan. The idea is that we would like to be fluent in ASL and English as a family, Zoe included in both. This way if she's missing things in English at school we can have a terp help fill in the blanks without her falling behind and we can do the same outside of her school. Although I'm crossing my fingers that she won't miss anything :)
 

ecp

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We live about 3 hours from the nearest Option School (CID/Moog in St Louis), so yes, I would rather be able to get her the resources she needs closer to home without having to pick up and move. We are also getting ASL tutoring this summer and hopefully next school year, and then when both my little ones are in school I'd like to start the ASL terp course at John A Logan. The idea is that we would like to be fluent in ASL and English as a family, Zoe included in both. This way if she's missing things in English at school we can have a terp help fill in the blanks without her falling behind and we can do the same outside of her school. Although I'm crossing my fingers that she won't miss anything :)

If you live closer to W. Tennessee, there are really good public schools that have both ASL and spoken language.
Way back in the day when I attended schools there it was called Total Communication.
 

AshJagla

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We're 30 mins from Marion IL, an hour from Carbondale IL, an hour from Paducah KY, an hour 15 from Evansville IN, 2 hours from Martin TN, 3 hours from Nashville TN, and 3 hours from St Louis MO.
 

deafdyke

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We live about 3 hours from the nearest Option School (CID/Moog in St Louis), so yes, I would rather be able to get her the resources she needs closer to home without having to pick up and move. We are also getting ASL tutoring this summer and hopefully next school year, and then when both my little ones are in school I'd like to start the ASL terp course at John A Logan. The idea is that we would like to be fluent in ASL and English as a family, Zoe included in both. This way if she's missing things in English at school we can have a terp help fill in the blanks without her falling behind and we can do the same outside of her school. Although I'm crossing my fingers that she won't miss anything :)

That is awesome. Not to mention that if her spoken language levels are still relatively low (Many dhh kids CAN develop spoken language abilty, but their proceifnecy can vary quite a bit from say havign a five year old spoken language level at ten years of age, to only being a bit behind and everything in between ) she can capitilize on the nautrual visual processing strengh that most if not all dhh kids have.
I think you'll do well.....and its good that you won't have to move.....you do have relatively good resources especially through that School for the Deaf in Marion.
 

deafdyke

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We're 30 mins from Marion IL, an hour from Carbondale IL, an hour from Paducah KY, an hour 15 from Evansville IN, 2 hours from Martin TN, 3 hours from Nashville TN, and 3 hours from St Louis MO.

Ash, one thing you could do is contact the Schools/programs for the Deaf in neighboring states, if they are relatively near you and see about any resources, camps, kids to interact with etc.......
 

AshJagla

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I plan on looking more into Paducah KY and Evansville IN :) We are too far for any outreach in St Louis or Nashville and they are also too far to drive to on a very regular basis.

We do St louis (6 hours of driving per visit) for Zoe's audiology and ENT, so there for a few months we were driving EVERY week, sometimes twice a week, and it ate up so much of our time and funds. It was well worth it but we're also very glad the appointments are starting to slow down! 1 and 3 year olds don't sit very good for such long periods of time lol
 

deafdyke

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I plan on looking more into Paducah KY and Evansville IN :) We are too far for any outreach in St Louis or Nashville and they are also too far to drive to on a very regular basis.

We do St louis (6 hours of driving per visit) for Zoe's audiology and ENT, so there for a few months we were driving EVERY week, sometimes twice a week, and it ate up so much of our time and funds. It was well worth it but we're also very glad the appointments are starting to slow down! 1 and 3 year olds don't sit very good for such long periods of time lol

Do you have a local pediatric audi? I think if you can get someone to follow her, now that you've got the foundation of a hospital that was very experianced with deaf infants/toddlers, that you'll get good services etc. Maybe contact the Marion school and ask which audis their students use.
 

AshJagla

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There is one in Carbondale I do believe, but St Louis has the highest praise within a doable distance. 6 hours per trip isn't fun, but we do have family in that direction, so we usually drop our 3 year old off in Belleville at her grandparents while we take Zoe to the hospital in St Louis. They enjoy seeing them and we enjoy not having to split our attention between two children at her appointments, so it's what works best for us for now :)
 

DeafAlex

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I'm doing well! Sorry I haven't been around, I had another surgery and it was a rough recovery!

I am doing well with my hearing! I have my next testing on Wednesday. Excited to see my speech numbers!

Ash is correct in that we have access to the high frequency sounds, it's just a matter of turning them up high enough. For me, I've had to slowly have my high frequency sounds turned up, because they hurt my head. This is completely normal. So I have a harder time with Shh and Sss like Zoe does. I'm sure my Audi will turn them up again on Wednesday. Like most hearing loss, the high frequencies are the worst, so having those stimulated can be uncomfortable/painful at first.
 
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