Bilateral Same Day Surgery

who receive CIs function as if they are hard of hearing, a majority of them do.
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We could debate this over and over......Many do, but it's very hard to tell why one person hears at mild levels whereas another might get speech perception at a moderate (unaided) level, whereas another person might only hear at severe levels or
Just wanted to emphasize that results are very indivdual.....although there are sub groups(like those with auditory nereopathy and those who had some hearing at one time) that respond well as a group.
Lilysdad, I know that I'm not the parent of a CI'd kid. I am VERY NEUTRAL on CIs. I just think that the parent of a CId kid has the right to know that it gives a wide range of hearing, so there's a lot of possibilites. Some of the information that parents get can be kind of biased towards making the product look like something sold on an infocomerical.
Hopefully, Ashley will get a lot of benifit out of her CIs.....but if she doesn't hear as well as other people with a CI, Ashely's mom should be prepared for that.
Oh, and has there been any research on end results of CId multiplyhandicapped kids? I thought implanting kids with multiple issues was still relatively new. I mean I thought up til a few years ago, they wouldn't even implant someone with just CP and hearing loss.
It will probaly benifit Ashely a lot..........but the question is, HOW well it will. Hopefully she'll get a lot out of it........but I mean the experts can't even really tell why one just dhh kid with CI will be functionally hoh, and another do OK, but still have significent delays.
 
ashleysmommy said:
My daughter is scheduled for bilatral same day surgery in March. Any one have any advice for us to prepare for the big day. ........
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Video camera. And, take lot's of pictures. Before, and after. Especially after is good to see the proces. I usde pictures a lot with Lotte (2-1/4 years at bi-lateral implant). Showing her the plasters, etc. And I think the pictures will be even more important later on. When she's like 6-7 and starts asking how it was.
We SMS'd a lot. Status of Lotte was passed on all the time and the replies are heartwarming as well. SMS is a lot better that using the phone since it prevents telling again, and again... Plus: We saved the SMS messages on the computer. Nice to have, like the pictures.....
Favorite toys of your daughter of course. Favorite food (they might not have it in the hospital).

With Lotte, she was up and going very fast. (remember, it is different with all children) The only painkiller she got after the operation was a paracet. She was fine all the time. (Well, after feeling sick once, and after the IV was removed from her foot. Actually, that was her biggest "pain in the ass".)
But, from 4 hours after the operation, she behaved like normal. Including cycling, reading, nagging, laughing....
She did great.

Again, feel free to contact me. (cloggy2000@yahoo.com)

Cloggy
 
deafdyke said:
We could debate this over and over......Many do, but it's very hard to tell why one person hears at mild levels whereas another might get speech perception at a moderate (unaided) level, whereas another person might only hear at severe levels or
Just wanted to emphasize that results are very indivdual.....although there are sub groups(like those with auditory nereopathy and those who had some hearing at one time) that respond well as a group.
Lilysdad, I know that I'm not the parent of a CI'd kid. I am VERY NEUTRAL on CIs. I just think that the parent of a CId kid has the right to know that it gives a wide range of hearing, so there's a lot of possibilites. Some of the information that parents get can be kind of biased towards making the product look like something sold on an infocomerical.
Hopefully, Ashley will get a lot of benifit out of her CIs.....but if she doesn't hear as well as other people with a CI, Ashely's mom should be prepared for that.
Oh, and has there been any research on end results of CId multiplyhandicapped kids? I thought implanting kids with multiple issues was still relatively new. I mean I thought up til a few years ago, they wouldn't even implant someone with just CP and hearing loss.
It will probaly benifit Ashely a lot..........but the question is, HOW well it will. Hopefully she'll get a lot out of it........but I mean the experts can't even really tell why one just dhh kid with CI will be functionally hoh, and another do OK, but still have significent delays.
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I'm starting to think you've appointed yourself as AllDeaf's unofficial CI Inquisitor. :P
 
Ashleysmommy,
I haven't been posting here for a while. My son Isaac had his implant surgery in September and was turned on in October. I would say that having a support system helped me through the surgery. Isaac's Grandma, Grandpa, Aunt and me and his dad were all there at the surgery. It was nice to have family there in the waiting room because I think that was the worst part for me...the waiting. It really helped me to talk to them about other things during the surgery. Isaac did really well with the surgery. He went home the same day. He was not himself that day. I think it was due to the medications more than anything. But the next morning, he was awake at 6:30am pushing his toy lawn mower around the house. He then took his bandage off his head, handed it to me and signed "thank you". I really think the surgery is harder on the parent than it is the child. If you want to read more about Isaac and his surgery, I have created a blog for him at Isaac's World
I wish you luck with Ashley's surgery. You will be in our thoughts and prayers. Take care!
 
deafdyke said:
HearAgain/greema while a lot of implantees get a lot of hearing, there are still some that get not so much hearing. Even over at Hearing Exchange, they admit that results vary widely. There are still some kids who actually NEED TC. Why is my saying that causing greema to pound her head against the desk? I'm very moderate about this.........I'm no Lady Duke or Sourmind.
But saying that all early implanted kids will be functionally hoh, is like saying that all kids who got hearing aids early will be functionally hoh. You have to admit that hearing abilty varies significently from person to person.


Oh that's true that not all preemies end up having developmental issues. I was just saying that b/c she's a preemie, she's at high risk for developmental issues. I was a wee bit early too. (three weeks) I dont have any issues directly attribuated to my prematurity (all of my issues are related to my syndrome)



Quick question.............are the speech and vision services being provided by teachers of the Deaf and teachers of the Blind? I have to say that I think that kids who have vision and hearing issues should ALWAYS get their Early Intevention specificly from teachers of the Blind and Teachers of the Deaf who are experianced and in some way affliated with the School for the Blind or the School for the Deaf.
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Her vision teacher is from services for the blind and vision impaired. She sees an AVT teacher for speech. She works with kids with ha and ci only. She also does some signing with the kids. They are both specialized in their field. I know that helps. That way they know how to be more in tune to her needs as a kid with hearing and vision issues. The deaf blind project is also sending aids and things to her teachers to help out.
 
Ashley's CI surgery

I appreciate all views about CI and the surgery. I know we will have ups and downs. Only Ashley and the good Lord above know how this will turn out. We are cautiously optimistic. Ashley has never followed any rule books. She has been writing her own from birth. The doctors told us she only had a 10 to 20% chance to even make it. She showed them!!!! She has been breaking rules and defying odds from day one so we only expect her to blossom and grow from this. I am willing to take a chance so my little girl can have as normal a life as possible. (What ever normal is anyway) I am not saying that not being able to hear is not normal or a bad thing but I know her life will be easier if she has the gift of hearing as well as seeing. We have had to fight for both. She is a very spunky girl with lots of attitude so she will not give up and we will help her in any way we can along the way. All opinions are appreciated even the ones that are not so positive (DD'S). We have to take the bad with the good and do the best we can. I will keep everyone posted on how we are doing. Thanks again for the feedback. Keep it coming! It helps to have so many people to talk to.
Ashley's Mommy
 
Given Ashley's vision problems, I think bilateral CIs will improve her quality of life significantly by enabling her to be more aware of her environment (something that is very important for children with combined vision and hearing loss).

I don't know how much functional vision she has, but her CIs will also aid in communication especially if she cannot see well enough to lipread or observe the body language of others.
 
Her vision is improving a tiny bit. She is not using her distance vision as much as she should be. She can see clearly about 9 to 12 inches away reg. objects and 2 to 3 feet away lighted toys depending on the size. It was 8 to 10 inches for anything until she had her glaucoma surgery. Once her pressures were under control she could focus better. She is more comfortable in her environment now than she was. She is gaining some independence. Yea!!!
 
ashleysmommy said:
Her vision is improving a tiny bit. She is not using her distance vision as much as she should be. She can see clearly about 9 to 12 inches away reg. objects and 2 to 3 feet away lighted toys depending on the size. It was 8 to 10 inches for anything until she had her glaucoma surgery. Once her pressures were under control she could focus better. She is more comfortable in her environment now than she was. She is gaining some independence. Yea!!!
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Glad to hear that her vision is improving! :)
 
ashleysmommy said:
Her vision is improving a tiny bit. She is not using her distance vision as much as she should be. She can see clearly about 9 to 12 inches away reg. objects and 2 to 3 feet away lighted toys depending on the size. It was 8 to 10 inches for anything until she had her glaucoma surgery. Once her pressures were under control she could focus better. She is more comfortable in her environment now than she was. She is gaining some independence. Yea!!!
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That's wonderful!! :)
 
Yeah, it's wonderful that her eyesight is improving. She seems quite the fighter. Do keep us updated on her progress. I don't think I'm the only one who's interested in Ashely's progress.
 
(back to the topic) -- ashleysmommy, it sounds like your little girl is gonna have a great life ahead of her! Keep up the good job of raising the little sweetie!
 
greema said:
Lucia, you were the originator of that expression! (hey, moderators -- can you possibly add a similie expressing banging your head on a desk?)

:cool:
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Here's a GIF that you can use! :D
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There is no debate aboute HOW to prepare for hospital....!!!!
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Of course not................Bring one of her favorite dolls in maybe. Be excited about the surgery. I know she's still a little kid but kids can pick up on things like that.

Guys, just b/c I am not all "rah rah rah" about implants, I'm suddenly anti CI? Oh lord........I am very much like this for other things like analog vs. digital aids. The thing is, response to different hearing stimulation technologies is VERY indivdual. Just b/c someone with a severe-profound loss can benifit significently (like hear at hoh levels) from digital aids, (and there is a percentage of severe-profounders who can signficently benifit from hearing aids) it doesn't mean that ALL severe profounders can benifit simalirly. On my hearing aid lists, I always advise people to experiment. What works for one person may not produce the same results for another.

She sees an AVT teacher for speech. She works with kids with ha and ci only. She also does some signing with the kids. They are both specialized in their field
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That's good that she does some signing. And that's also good that she's seeing an AVT......if there's not a local oral school, AVT is probaly the best bet for having a dhh kid develop oral skills. Most "general" speech therapists
tend to have very basic training in teaching dhh kids.
Have you thought about getting a therapist/teacher for working on Sign skills? They can teach your daughter Visual Frame Sign and Tactile Sign, as well as giving your daughter expressive language skills. Even if she can hear at "hoh" levels with CI, she might have spoken expressive language issues. (called apraxia) It's very common in kids who are just dhh.....and her multiple issues, might add to the risk.
 
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