On the Cochlear Implant

I've talked before about my daughter, the Cute Deaf Baby Cute Deaf Toddler. Diagnosed with hearing loss at birth, she's profoundly deaf in her right ear and has been using a hearing aid in the left since she was three months old.

Our concern as parents has been that right ear--with no stimulation, there was no chance that it would ever be useful to her. We talked at one point about trying to aid it as well, but all of her audiograms said that wouldn't work. We asked about getting a cochlear implant on that ear, but the recommended procedure is to implant the better ear, because there's a higher chance of having success with the implant if the ear has had some stimulation. I understand the point, but that wasn't changing the fact that her right ear was quickly going past the point of no return.

The eventual winning argument we hit on had to do with her speech--she's still significantly delayed (like, 1st %ile delayed) in her expressive language, this with every intervention possible since she was born. We pivoted off of that into the thesis that because the hearing aid alone clearly wasn't enough to allow her to access language, then we had to do something more, and in this case something more was going to be the cochlear implant.

By gum, it worked. They refused the first request and made us appeal, which really put my wife on edge but seems like it's just part of the game any more, but early last month we took her to the Sacred Heart Hospital here in Spokane and had her surgery.

Her mom and I held it together pretty well, until they wheeled her back to the OR. By then she was loopy on medications and didn't notice her mom and I were teary-eyed, but I suppose that the fact that sending the kid off to be operated on isn't such a common occurance in my life that I take it for granted. The surgery itself took about an hour, at which point we got to go back to the recovery room and wait for her to come out of the anesthesia.

She woke up mean. The look that she shot her mother and I pretty much said it all: "You bastards did this to me, and you're going to be paying for it for some time to come." Her oxygen numbers weren't what they wanted them to be, so we had to stay a couple extra hours, but after checking in at 6:00 that morning we left the hospital at 6:30 that night, which is pretty amazing when you consider that she had just had cranial surgery.

That was just the implant, though--the piece that goes under her skin and stimulates the cochlea. After giving it about a month to heal we went to Spokane ENT where they gave us the external processor, which looks like it came right out of the Apple family of products. It also comes with a remote control and a suitcase full of equipment.

The piece we're working on now is to see if the implant is making a difference in her hearing. It's basically teaching her to use that ear, a process that we've already been through with her left ear and the hearing aid, so in some respects were taking a step backwards and working on listening skills that we had already covered years ago. If this works, though, she's have binaural (stereo) hearing and we should see an improvement in her oral language, which would be a great thing.

Parenting: it's a new adventure every day.

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My Deaf Daughter

Hard: Getting a 10-month old to keep her hearing aide in when she doesn’t want to.
Easy: Getting into a power struggle with that same little girl over that same little hearing aide.

Long time readers will know that my daughter was diagnosed with near-total hearing loss at age 4 months (see here, here, and here); it’s made parenting even more of an adventure than it would have been. She has a hearing aide, but I guess she doesn’t like to listen to daddy because the second I get home she pulls it out.

So I put it in.
So she pulls it out.
So I put it in.
So she pulls it out.
I put it in.
She pulls it out.

Repeat all night long, until exhaustion.

Her newest specialist is a physical therapist. The thought is that because of her deafness her balance was thrown off, which is why it was taking her so long to master sitting and crawling. She absolutely loves PT; the way her face lights up when she sees the therapist is one of those great parent moments, and the PT itself has made a real difference. I’m still not looking forward to teaching her how to ride a bike, but we’ll cross that bridge when we come to it.

I’ve never been much of a doctor guy. Yeah, it’s a stereotype, but it’s me. I’ve got a general practitioner that I go to when I have to, but that’s maybe once every two years or so. Kailey, on the other hand, has:

An audiologist, a physical therapist, a hearing aide specialist, a pediatric optometrist, a consulting teacher from the area school for the deaf, the ENT doctor, her family practice doctor, a geneticist, a pediatrician who specializes in special needs kids, a social worker through the county social services office, and a partridge in a pear tree.

That’s not counting the innumerable secretaries and nurses who have helped us along the way. It’s certainly been a team effort, and I say a prayer of thanks every night for the support we’ve had.

It makes me think pretty regularly of the families, both here and abroad, that don’t have the resources available that my daughter does. Being a teacher helps, because I’m more familiar with the system than many might be. It’s still hard, though, to give up all the time to take her to all the appointments (2 a week normally, sometimes 3 or 4). When we balance that against doing whatever it takes for her to “make it”, though, we get it done. That’s what all that accrued sick leave is for, right?

The next big thing will be to look at a cochlear implant. The right ear is profoundly deaf, the left ear severe to profound. What that means is that we’ve been able to use a hearing aide in the left ear, and her ENT doctor thinks that might be enough to get her through life. The teacher who works with deaf kids strongly disagrees; in her experience as a deaf educator the kids who get the implants are almost always better off than the ones who try to go with the hearing aide alone. She says there’s a new trend towards getting bilateral implants, one in each ear. It’s amazing what they can do, really.

Looking around online doesn’t really help. One website will tell me that if I give my daughter a cochlear implant I’m wasting $50,000 and helping commit cultural genocide; another is filled with glowing testimonials from parent who finally have a “normal” child. I don’t know what’s right. I know the life I dreamed of having with my daughter, and there are still days when I mourn the death of that dream, but it seems like getting the implant would be a step, a small step, towards normality.

Then I ask myself, what is normal? So what if we do sign language, so what if her speech never fully develops, so what? So what.

So what.

We have a test coming up in a few weeks called an ABR, where they sedate her and hook her up to the brainwave monitors to see exactly what sounds are getting through and at what decibel levels. That will give us (meaning the whole team) a good look at where she’s at and just how much the hearing aide can do for her. After that, the discussion begins.

I’ll let you know where it goes.

She’s also started crawling within the last week. You never know how many things that you have are close to the ground until you have a baby. So far she’s tried to eat leaves off my ficus, chewed on an electrical cord, and had more fun with shelves than should be legal. It’s neat to get down on her level and just look at all the things that are out there for her to get in to. Neat, and annoying.

That’s my daughter :-)

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It’s a Process

Last week the Little (s)Thinker had her big hearing test. The result: Completely/profoundly deaf in the right ear, moderately to severely in the left. It sounds bad, but what it means is that she should be a good candidate for a hearing aid in the left ear, which will be a big help. It also told us exactly which ear we should be yelling into when we try to talk to her: the left.

“HELLO LITTLE BABY, HOW ARE YOU TODAY?!!”

“Coo!”

“WHO’S A CUTE LITTLE BABY? WHO? YOU! YOU!”

“Gaa!”

Good times. The test was interesting to watch, because even sounds that were painfully loud to the wife and I sitting in the room with her got nary a reaction from her.

It’s also fascinating to think about just how she registers with the world. She makes sounds of her own beyond crying, and I wonder why. Is it instinct that makes a deaf baby make those happy noises? Is it the inner vibrations that lead her to do it?

Anyhow, next week we have a meeting with a social worker to hear about programs that are available to kids with disabilities, like my daughter. The week after that they’re going to make the mold of her ear to get her fitted for the hearing aid, and the week after that she should get it installed. That’s going to be big. When I can finally talk to my daughter and know that she’s hearing me....yeah, that’ll be big.

There are a lot of resources out there. It looks like the speech and language program through WSU-Spokane does a lot of work with deaf kids, and we’re going to find about about the birth-to-three programs available through the state. One of the ladies I work with brought up social security, another talked about the active deaf community in the area. It’s going to be an adventure.

The nurse who did the tests last week also brought up cochlear implants. I’ll have to do a lot more research before I feel comfortable with that. I look at her now, a little baby, and then I think about them cutting into her head for surgery…I don’t know.

I’ve gotten a wide variety of responses from the people at the school, too. Some have started crying as soon as I gave them the news; other are, “Wow, that sucks!” We’ve both been told too many times to count that the Lord gives special kids to special people and that she couldn’t have possibly gotten better parents to deal with this. I work with great people, and this has really driven that home. The support is profound, and appreciated.

Read more here, if any.