cochlear implants

[hdirks]

Lani's having bilateral implants next friday! I really don't know how to feel about it. It has been a really tough decision for both me and my husband. There are times in the day where I am tempted to cancel the whole thing and just let her be the way she is. Then there are other times where I can't wait to see her reactions and how they will do. Did any body else who is a CI family go through this? What was the surgery and healing time like? Also how long before they started to understand speach or talk with speach therapy?

[fairejour]

First of our situation is a little different. My daughter was actually born hearing and slowly lost her hearing. She got her implant at age 5.

First, I would say that the surgery really wasn't that bad. Miss kat was nearly back to normal, except for the big bandage on her head, after a nap and dinner. I will however share with you what another parent said to me, in case you need it: There will come a point where you think this was the worst decision you ever made. When they wheel your baby out of the operating room and she has a big bandage on her head, two black eyes (this didn't happen to us, but is very common) and she is in pain and miserable, and then she starts to bleed from her nose or ears (that did happen to us), you will feel like you are the worst parent in the world. You aren't. You made this decision for very good reasons and those reasons remain.

Second, it will take about a year of listening before the first word appears, just like a baby with normal hearing. I know you said that your daughter has some brain damage, I would think that would mean it would take longer. What is your baby's prognosis? She she likely to develop spoken language? My daughter also may have brain damage from birth trauma, but her's is very mild. Try not to compare, and just be happy that your baby can now hear!

You will need to have really good therapy set up, straight after activation. That is the biggest key to success, good therapy.

This decision was very hard for us as well, because we are a part of the Deaf community. While we are hearing, we use ASL and sent my daughter to an all Deaf, signing school. We really never considered a CI...until we did!

[journeywooz]

I'm a deaf mother and I come from a long line of deafness in my family. My daughter is also deaf. None of us have CI--so I can't really speak for myself (and my honest opinion..if it aint broken, don't fix it).

However, I have many friends who are implanted--both from infancy and later in life. They all have various reactions and input on implants.

I've seen some great levels of effectiveness..and for some, it just didn't work well and came with lots of mapping troubles. Some stopped using them, mostly due to their own frustration, isolation from their true identity as a deaf person sometimes with extreme pressure from their parents and a-v therapists.

So, CI or not, I believe the most important thing is YOUR interaction with your child. The amount of time she picks up speech (or any kind of language for that matter) depends on the energy and time you invest in her. I truly think it's important that your child have full access to languages, both audio-verbal and american sign language. From what I've seen, the most successful CI cases were fluent in both languages and made such wonderful bridges between the hearing and deaf worlds. And when they didn't have their processors on, they can't hear a sound at all...so that's also where ASL comes in handy. Remember, they're still deaf at nighttime, during bathtime, at the beach, and when the batteries run out.

I've also seen some deaf people who are furious with their parents' decision to implant them..but it had to do with isolation and refusing access to sign language. They feel like they've been lied to when they come across a normally-functioning deaf community (and there's no way to avoid that). And some of their parents had ridiculously high expectations.

I do believe that a CI can be a benefical tool, depending on how it's used. But I also hope you'll give your child access to all the options, including sign language. After all, its a beautiful language.

Best wishes!!

[hdirks]

We are definitely going to teach her both ASL as well as speach. our therapy services are already set up through our early intervention.....as well as pt, ot, cognitive therapy, teacher of the deaf and hard of hearing, etc.... I want to give her all of the options available and let her decide when she is old enough what is best for her. It just scares me in general. I also usually beleive that if it's not broke there is no need to fix it. So this is a huge conflict for me. However, she is so far behind in everything else I almost feel like this is a choice I had to make. She has global delays and may never be able to sign normally.

As far as her brain damage goes, no one can really tell us if it will effect anything or if it is just a normal difference. She has no diagnosis so we do not know what is causing all of her problems.

Thank you both for your advice! It is really helpful to hear from other people on the subject. (However the surgery is still scary to me.)

[2boyzmama]

Connor does not have a CI, but since we are active in the Deaf community here, I've seen many kids with them. For the most part, the parents were happy with the decision to implant their kids, and the kids responded well. There is one that I know that even after having her implants for 3 years does not grasp the concept of spoken language (however there may be other factors with her, she's undiagnosed). I also have seen my share of parents who say "she can hear now, she doesn't need ASL" and even some who intentionally take ASL away from their kids, put them in an auditory-verbal program, and have the opinion that ASL will handicap their verbal progression. I'm glad that you are still going to provide both to Lani, in my personal opinion, that's the best way to approach it.

The kids I know that have had the surgery have done really well with healing. I don't know of any complications any of them have had. The bandage sure looks big and scary initially, but the incision is so small, and heals so quickly. (completely aside...have you talked to the surgeon about shaving her head? I've seen it done with almost no shaving, so little girls can keep their long hair if they have it)

It's so hard to be patient between surgery and activation, one of Connor's friends had her implant and her activation was delayed a few weeks because of scheduling issues and a holiday, and I was so anxious for her first mapping!! (and I'm not even her parent!) She did really well with the activation, but her first words didn't appear for a while, and even her response to sound was very inconsistent for a few months. But you have to remember that she will be like a newborn initially, not at all accustomed to hearing sounds, let alone responding to them.

Oops...got to go! Good luck!

[hdirks]

Originally Posted by 2boyzmama

The kids I know that have had the surgery have done really well with healing. I don't know of any complications any of them have had. The bandage sure looks big and scary initially, but the incision is so small, and heals so quickly. (completely aside...have you talked to the surgeon about shaving her head? I've seen it done with almost no shaving, so little girls can keep their long hair if they have it)

It's so hard to be patient between surgery and activation,
!

Yes! they are only going to shave and inch or two on each sad. (still makes me really sad because she just got some gorgeous curls and they are right where they are going to shave And the wait is going to kill me between implant and activation!

[~cassie]

My son has his first surgery almost 2 years ago and his second will be 1 yr next month. He did really well with both of them. He came out of surgery screaming and literally screamed for nearly 3 hours-but after that he was fine. He slept til abotu dinner time and then was jumping around like normal. It took him about 6 mths to start babbling mama-so he was about 20 mths old at that time and by 1 yr after activation he had 6-10 words, I can't remember at the moment. After the 2nd implant was activated at age 2 he took off with speech and he says so much now. Still not caught up to age, but he will get there and hopefully your daughter will as well. We also did/do signing to bridge the 2 languages since he was already familiar with ASL.

[fairejour]

Have you joined CICircle yet??

It's the best!!!

[hdirks]

Originally Posted by fairejour

Have you joined CICircle yet??

It's the best!!!

No! where is that at?

[fairejour]

http://www.cicircle.org/

You can access everything from this link. It has a FAQ section, links to parents blogs, and lots of other resources.

http://groups.yahoo.com/group/cicircle/

This is the link to the yahoo discussion group. I hope to see you on the list soon!

[fairejour]

Oh, and what brand are you going with? My daughter has Advanced Bionics and we think they are amazing. We think she gets the best access to sound and the device is just the best technology out there!

[hdirks]

Originally Posted by fairejour

Oh, and what brand are you going with? My daughter has Advanced Bionics and we think they are amazing. We think she gets the best access to sound and the device is just the best technology out there!

She's getting the Nucleus 5! Thanks for the infor on ci circle! You will definitely see me on there!

[~cassie]

Originally Posted by hdirks

She's getting the Nucleus 5! Thanks for the infor on ci circle! You will definitely see me on there!

The nucleus 5 looks great! We have the Nucleus freedom and couldn't be happier with it!

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My daycare girl got them on her first birthday. (she's three now)

I think most kids do better than she's done. I won't lie... it was a hard year. It got worse before it got better. SHe hasn't been happy with them.

She's had them two years now, and she does OK with them, but nowhere near as well as some of her classmates. She's in a school that uses no sign language, only spoken language. She starts there full time next year!! I'll only see her on her days off. I am so excited to see her after a few months of full time school .

I did learn (here in fact) how to do her hair for the "ears". At first, she had a backpack with the processors in them, and the wire going up. We couldn't keep them on for anything. Someone suggested braiding the wire into her pony tails, and that worked beautifully! And, SUPER cute. Now, she has the kind that hook on her ears. SHe refuses to have them on her ears, so we hook them onto her pony tails... and that is adorable too. We even decorate them for the seasons. You should have seen her at Christmas!

I watched the movie "Sound and Fury". It's a great documentary that shows you both worlds.