Q: Where will his surgery be?
A: Children's Hospital of Wisconsin, Milwaukee
Q: Is AJ receiving one or two implants?
A: AJ is receiving one implant. Our Cochlear Implant Program does not do simultaneous bilateral implants at this time.
Q: Which ear?
A: The right. We chose this side as it is his "stronger" side in regards to his cerebral palsy.
Q: How long is the surgery? Will he be put under?
A: His surgery will last 1.5 to 3 hours. Yes, he will be under general for the surgery. He'll spend the night at the hospital. They only allow one parents to stay, so Mommy will stay and Dad will be a phone call away.
Q: What will he look like after surgery?
A: A ninja :) He'll have a large gauze bandage (possibly a plastic cup) over his right ear. The bandage usually comes off within the first day or two. I have a feeling we will have to use the arm splints with him to keep him from touching his head.
Q: Will he hear right away? If not, when will he hear?
A: NO, AJ will not hear right away. The implant does not work unless the internal and external pieces are together. The external piece will not be put on or turned on until 3-4weeks after surgery. His incision needs time to heal.
Q: Where is the incision made and the internal device placed?
A: Usually, the incision is behind the ear, with the internal device just up slightly.
Q: Which implant company have you chosen to go with?
A: Med-El. We like the size and weight the most, since AJ is such a little guy. He'll be able to go to the BTE (behind the ear) set up right away, if not sooner than with the other brand we were considering. We also like the remote, the deeper insertion of electrodes, and the technology that will allow him to go down the slide and not screw up his processor. Those are just a few things.
Q: What happens after surgery?
A: He's given 3-4 weeks for his incision to heal. Then comes activation day. This is THE DAY AJ will hear for the first time. The external piece will be placed on his head and turned on. His audiologist will set up a beginning program. His implant will NOT be placed on full sound (if that makes sense). We'll have a program to turn him up a notch every day. To start with, she'll probably set them to where he hears with his hearing aids currently. Without aids, he's at 120db. With aids, I'd say 75-80db. Eventually he "should" be about hear 25db and above!!!
It takes kiddos some time to get used to sound when they've never had it before. Here is the speech banana. Check out what sounds you hear at which db! the banana shape with the "letters" inside shows at what db you hear those speech sounds...thats why its called speech banana. You can see that right now, at 120db, AJ hears nothing, except maybe a jet engine right next to his ears.
AJ will also begin intense speech therapy to help him listen, interpret the sounds he is hearing, and hopefully, learn speech. Because of his cerebral palsy, we do not know if he will develop speech. Simply a fact. Because he is still so vocal now, that is a good sign. We are very hopeful and think this kiddo will have lots to say when he can hear!
Q: Will you stop signing to him?
A: NO. We have chosen to continue sign language with AJ. We're choosing a sandwich approach between spoken language and sign.
Q: When does he have to take the external part off?
A: When he swims (although lots of parents have found ways to allow their kids to swim with a CI on!), takes a bath, and when he sleeps
Q: Will he no longer be deaf?
A: AJ will always be deaf. His cochlear implant will allow him to enter and participate in the hearing world, but it will not "cure" his deafness. Once he takes the coil off his head, he won't be able to hear. Eventually, I think he'll figure out how to slip his coil off "accidentally" and say, "Mom, I can't hear you." His version of selective hearing :)
Q: Is all this really worth it?
A: Beyond worth it. Period.
Q: WHAT WILL HE HEAR?
A: This is the most common question we get. It is unknown as to exactly what deaf children with a CI hear, because those of us with normal hearing, cannot hear what they hear. The only ones who are able to tell CI professionals how it sounds different are adults who had their hearing, lost it, and then regained it through use of a CI.
Another CI Mommy posted these links on her son's blog. Please click HERE to go to her blog. I can't figure out how to get the links to the sounds on our blog :)
In the paragraph after the picture of her son chewing a blanket you'll find the links as to how it will sound as AJ's implant sound levels are increased. Awesome!
Q: Will he wear his hearing aid in his left ear with the CI for his right ear?
A: This is called bimodal. NO, he will not. AJ receives very little, if any benefit from his hearing aids. This is because his hearing loss is so profound. What he gets from his aids now is, pretty much useless. We and his audiologist have decided to allow him to concentrate on what he'll be betting from the CI alone.
Q: Will he ever receive another implant?
A: This is called bilateral implants. YES. We hope to submit paperwork for a left CI soon after he is activated and we see how he is doing with his first CI. With his cerebral palsy, having bilateral CIs will allow him better balance, coordination, and most of all, he'll be able to detect which direction a sound is coming from. Awesome!
Q: Are you really ready for this?
A: YYYYYYYYYYYYYYYYYYYYEEEEEEEEEEEEEEEEEEEEEESSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS
If we missed anything, please feel free to leave a comment and we will answer your questions...
I love how you did this! I've been (very slowly) putting together a post to educate friends and family about CI's, activation, etc. This is great! LOVE IT!
ReplyDeleteBTW ... I'm going to be in WI this summer, for probably around 3 weeks and Aiden & I would love to meet you and AJ! We'll have to stay in touch as the time approaches!
We are a Med-El family too!
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