Newbie looking for advice

jaydawg

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Newbie here looking for advice. My wife and I are both hearing and have 2 profoundly deaf children. Our son is 1 year and our daughter is 6 weeks old. Anyway, we have been taking all of the advice from the doctors etc and doing research since their birth but we would like some real life opinions. Our son is scheduled to have his first CI later this month. We were going to use the Cochlear Nucleus 5, but it just got recalled. They are now suggesting that we use the Freedom internal, but we would still use the 5 external. Any thoughts, suggestions, or opinions?
 
Most thought here will be along lines of "deaf not bad...deaf beautiful...why ruin?"
 
I'm of the "camp" that you should let the child choose whether or not to get one (this can be anywhere from "as soon as they can understand the basics" to 18). And regardless of whether or not you let them choose CI, they should be given ASL.

However, I also realize that parents have license to do whatever they want to their kids in regard to this, so, regardless of whether you're going for ASL or speech or full toolbox, I'll just say that what they've suggested is the best, technologically speaking, you're going to get from Cochlear right now.
 
We've had a very good experience with bilateral Advanced Bionics Harmonies for our daughter who was implanted at 1 year old. Have you considered other brands- AB or Med-el? I'm not sure I would want to be "settling" on a decision of this magnitude. Be completely comfortable with your decision, then don't look back!

I think it's awesome that you've chosen to implant early- all the research shows the earlier the better. The thought of not implanting kids makes me weep. I say this as the parent of a deaf child who is now hearing using cochlear implants.

Also, USE SIGN! It's amazing the difference that it makes, even for otherwise normally hearing kids.
 
We've had a very good experience with bilateral Advanced Bionics Harmonies for our daughter who was implanted at 1 year old. Have you considered other brands- AB or Med-el? I'm not sure I would want to be "settling" on a decision of this magnitude. Be completely comfortable with your decision, then don't look back!

I think it's awesome that you've chosen to implant early- all the research shows the earlier the better. The thought of not implanting kids makes me weep. I say this as the parent of a deaf child who is now hearing using cochlear implants.

Also, USE SIGN! It's amazing the difference that it makes, even for otherwise normally hearing kids.

In other words, you weep for me?
 
:roll: Guys, let's not scare them off. I for one think that a CI is a decent option. 80 years ago you guys would have been ranting and raving about hearing aids. It is possible to implant, and also give kids the option of hearing and speaking. If they don't like the implant, they can just dump it later on.
sunny it's not "ruining a deaf kid to implant them. Not at all. Granted it does create a lot of identify issues....but that's simply b/c hoh kids have wrongly been educated orally and thought to be more hearing then deaf. Those of us who are hoh (both audiologically and functionally) are both hearing and deaf.
 
Not ruin kid, ruin deafness. Deafness beautiful, not need fixing, my opinion.
 
Newbie here looking for advice. My wife and I are both hearing and have 2 profoundly deaf children. Our son is 1 year and our daughter is 6 weeks old. Anyway, we have been taking all of the advice from the doctors etc and doing research since their birth but we would like some real life opinions. Our son is scheduled to have his first CI later this month. We were going to use the Cochlear Nucleus 5, but it just got recalled. They are now suggesting that we use the Freedom internal, but we would still use the 5 external. Any thoughts, suggestions, or opinions?
Hi. Wellcome to AllDeaf.

As you noticed... mixed feelings on this messageboard... Well, it's called AllDeaf for a reason..

Exciting trip ahead of you guys.. My daughter got her CI in 2004. Freedom, bilaterally in 1 operation..

With what I know, I would not have a problem with the Freedom internally instead of the N5. It might take some time before Cochlear is putting out the N5 again, and that time is valuable for your child. Having to wait 6 months is LONG for your son.. Starting to hear now instead of 6 months makes quite a difference..

There is the possibility of using another brand but I can imagine that you have reasons for selecting Cochlear. I would stick with the choices you have made in order to prevent complicating things and postponing the day that your son will hear. The sooner he hears the better for him..

Good luck. It's a beautiful journey. Lots of emotions, lots of rewards...
.. and yes... learn signs... Signlanguage is a new language and might be difficult to start with, but use ASL signs as much as possible when you are interacting with your son..

p.s. Have you been at CiCircle for information?
 
Hello! I echo Cloggy's recommendation of CIcircle.org as a resource, there's an associated yahoo group that's invaluable.

Our 5yo is deaf, too, and received her first nucleus freedom at nearly 2, and then went bilateral at nearly 3years old. Two years later, and she's testing at age level or above using spoken English and she's fluent in ASL. This, despite having no language input during her first year ( we adopted her from china, where her profound hearing loss went undetected at the orphanage ), and only visual input during most of her second.

She's been at a bi-bi school for the deaf for 4 years, inculcated in Deaf culture, and yet she LOVES her CIs, we get no cultural push back and you'd never know the controversy and opposition you see here even exists in her real life.

She really didn't like the various HAs we tried for almost 6 months. Because of her level and type of hearing loss, they gave her no benefit, just pounded her head with amplified noise. But, for years she has insisted on wearing her CIs from morning until she falls asleep. You can imagine how happy we were to find that her upgraded N5 processors can be worn while in the pool, at play among sprinklers, while kayaking, etc. -- we've certainly tested their marketing against reality, and they keep on ticking. We like the Freedom inside / n5 outside combination: my daughter is taking increasing responsibility for using the remote now, changing over to her music program when she's at piano lessons to hear every note, shifting to "noise" program in a crowded gym when doing Kung Fu and gymnastics to dampen down the environmental sounds and keeping to her "everyday" program while in class so she can fully access the teacher, incidental conversations with the other students, etc.

I'm not into the brand wars, frankly I think any of the 3 manufacturers would provide you with a great product and service. In our case, I've found the company and their service has been amazing -- and we liked the reliability record , our surgeon's preference for it, and the familiarity our ciclinic audi staff has with it: great audiological services after the surgery are so critical. If I could do things differently, I would, though: we'd push to get both CIs much sooner! They say it's just an incremental improvement, but we've found in practice that wearing two, going bilateral, makes an ENORMOUS difference!

Best of luck with whichever product you choose! Happy to answer any questions about the freedom /n5 combo if you are considering that approach.
 
Wise words from cloggy and GrendelQ who both had to make decisions re: Implants for their young children.

Implanted Sunnybrook/Toronto Advanced Bionics-Harmony activated Aug/07
 
Thank you all for your advice and information. I understand that there are cultural, idealistic differences within the community regarding CI's as a whole, and I didn't mean to offend anyone with my ignorance

I was just worried that after all of the great things Cochlear says about the 5's array etc, that now they are telling us we need to implant the Freedom, but it will be just fine, and we can still use the 5 processor. It seemed troubling, but it worries me to wait on the 5, because I fear losing valuable time and opening the door for potential future recalls.
 
Thank you all for your advice and information. I understand that there are cultural, idealistic differences within the community regarding CI's as a whole, and I didn't mean to offend anyone with my ignorance

I was just worried that after all of the great things Cochlear says about the 5's array etc, that now they are telling us we need to implant the Freedom, but it will be just fine, and we can still use the 5 processor. It seemed troubling, but it worries me to wait on the 5, because I fear losing valuable time and opening the door for potential future recalls.

jaydawg,First of all, the CI debate has simmered down a lot!!! Also take what Cochlear says with a grain of salt. They're a business and enjoy hyping up their product. (which can fail, be recalled etc)
 
Thank you all for your advice and information. I understand that there are cultural, idealistic differences within the community regarding CI's as a whole, and I didn't mean to offend anyone with my ignorance

I was just worried that after all of the great things Cochlear says about the 5's array etc, that now they are telling us we need to implant the Freedom, but it will be just fine, and we can still use the 5 processor. It seemed troubling, but it worries me to wait on the 5, because I fear losing valuable time and opening the door for potential future recalls.

Just note this - the deaf are telling you to leave the kid be... the hearing world is supporting it....

Whatever you do, incorporate ASL no matter what....
 
So, the Freedom internal is the older technology, right? I'm still trying to figure out how a company can present and heavily market new technology, and then when it is recalled, ask potential patients to consider an older technology that under normal circumstances would be considered the inferior choice, or at least a choice that would not be recommended otherwise. That has been bothering me since I read the orig post.
 
So, the Freedom internal is the older technology, right? I'm still trying to figure out how a company can present and heavily market new technology, and then when it is recalled, ask potential patients to consider an older technology that under normal circumstances would be considered the inferior choice, or at least a choice that would not be recommended otherwise. That has been bothering me since I read the orig post.

It's always been about the dinero.... What amazes me more.... They have older stuff in stock...
 
jaydawg,

I will echo what the others have said about getting over to the cicircle, good people, great advice and no fighting.

My daughter is 24 and was implanted in 1989 at age 2 and although it was a decision we thought a lot about, it was the best one we ever made. She has just gotten her Masters and landed the job she wanted coming out of school. It is exciting to now see her and her friends, some of whom we have known since they were infants, graduate college, getting jobs and getting married. We shed tears--tears of joy!!

There are plenty of deaf adults here and on other forums who have cochlear implants, seek them out as they can provide you with valuable insights from their experiences pre and post implant.

I agree with Grendel and do not want to get into a brand war as I have seen many people do very well and some not so well with the three brands.

You child and you are about to begin an incredible journey. I wish you all the best.
Rick
 
jaydawg,

I will echo what the others have said about getting over to the cicircle, good people, great advice and no fighting.

My daughter is 24 and was implanted in 1989 at age 2 and although it was a decision we thought a lot about, it was the best one we ever made. She has just gotten her Masters and landed the job she wanted coming out of school. It is exciting to now see her and her friends, some of whom we have known since they were infants, graduate college, getting jobs and getting married. We shed tears--tears of joy!!

There are plenty of deaf adults here and on other forums who have cochlear implants, seek them out as they can provide you with valuable insights from their experiences pre and post implant.

I agree with Grendel and do not want to get into a brand war as I have seen many people do very well and some not so well with the three brands.

You child and you are about to begin an incredible journey. I wish you all the best.
Rick

They haven't began the journey???
 
Hi,

I am a freedom implant user with N5 external processor and love it, The Internal implant is not much different to freedom techology wise, the size in N5 is slightly smaller/thinner. Freedom had been around 6 or so years and has a very good record of reliablity. I would go with my gut feeling and talk to your CI centre rather than here. The CI circle is also a good place for parents.

Recalls/failures can happen anytime, it was just bad luck to any manufacturers but it's a very small risk.

I would suggest sign language too so the children have access to both languages.

All the best
 
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