Daughter Update

I've come over time to believe that the phrase "Sleep like a baby" is a load of horseshit, because my dear daughter doesn't sleep. She kicks her daddy in the ribs, she flails, she hits her head against things--she puts out more energy sleeping than I do awake.

My official diagnosis for my daughter right now is congenital cytomegalovirus (CMV or CCMV, depending on where you look). The way that it's manifested itself the most is deafness--she was born with total hearing loss in the right ear, and a 70-80% loss in the left--and the concern with CMV is that she could also lose her eyesight, which would leave her deaf-blind. Yesterday we received a bit of hope from her ENT doctor, who said that the hearing she has is maintaining nicely, and that with CMV kids most of the problems are there at birth, and almost certainly by age three. We're halfway there, so it gives us a target.

Insurance is a pain in the ass. Couldn't live my life right now without it, but it's still a wonky, wonky system. My daughter is qualified for physical therapy and speech therapy, but they only authorize for 12 visits at a time, and the referral has to come from her family doctor, not from the office where we get PT and speech. That means that I have to do some careful calendar watching to make sure we're not running out of referrals, then call the family practice, who calls Group Health, who calls the PT center, who confirms with Group Health, who then sends out a referral. We do this every 10 weeks or so. With my daughter, who is certainly going to need both for the forseeable future, wouldn't it make more sense to give me a 1-year authorization with a reminder to stay under the 60 visit cap that's in the plan?

Such is life with a special needs child.

In other news, we're still efforting getting an appointment with the pediatric neurologist to go over the results of her MRI and find out what exactly that scar tissue in her brain means. That'll be a big appointment. In two weeks we have her eye appointment, and we're praying hard for that one to be where we want it to be. If you're of that bent, and candles lit would be appreciated.

Happy weekend!

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A Bad Day

Yesterday we met with a developmental pediatrician in Spokane to have her take a look at Kailey, the Cute Deaf Baby. Honestly, the wife and I thought it was going to be just one of those things you have to do--everything seems like it's been going fine, we're really happy with how the PT has been going, we've got speech therapy lined up to begin soon, life is good.

We left the appointment devastated.

Dr. V has a sterling reputation and she's one of the name doctors in a town that doesn't have many. She came in and gave CDB a basic physical, then she lays it on us, "Her muscles are underdeveloped-she's hypotonic."

Oh. But what does that mean?

"Well, in a third of cases they outgrow it and you'd never know. In a third of cases they're always like this, which pretty much rules them out of athletics. In a third of cases, it gets worse."

Oh.

But what does that mean?

"I also think she has some facial abnormalities, especially there in the bridge of her nose. There's a syndrome that encompasses deafness and facial symptoms called DiGeorge's. I'm going to go ahead and order an MRI so we can see what her brain function is doing, and we might want to consider an EKG just so we have a baseline in case there's heart problems in the future."

....

When you're in the middle of a tidal wave you don't pause to wonder where the water is coming from, you paddle like hell and try to keep your head up. That's what it felt like sitting in this doctor's office hearing all these things about your child.

Afterwards Mrs. and I went through the stages of grief. She worked in depression and denial; I focused on anger. Rage, really. Who the *uck was this lady to look at my daughter for 5 minutes and make these sweeping proclamations about who she is and what she could be? Sure, I want to know WHY she's deaf, but please don't put my wife and I through a God-damned fishing trip just for the hell of it.

She also recommended that we pursue getting services from the Spokane Guild School, a great organization set up to help profoundly disabled kids. I'm having a hard time with that one, too, for some of the most horrible, petty reasons. The Guild School is for kids who have big, big problems. Autism, Downs, and worse--the kinds of illnesses where your life is measured in months instead of years. A small comfort we had with her deafness was the thought that, hey, things could be worse. This appointment was a first step down that road, to worse.

Mrs. held it together OK in the Doctor's office, but when we took Kailey to her next appointment, with the teacher of deaf kids, she broke down hard. I was doing pretty good until then, but seeing her like that got to me. Kailey's teacher is exceptional and gave us a lot of pointers about where to go next, and it was good for my bride to have someone more rational than I to talk to.

We came to acceptance in the evening. Maybe the doctor is a quack, maybe not, but let's have the testing done to see. Let's look into getting a second opinion. Let's talk with the Guild School, because anything that we can do for our daughter we will do.

It's hard to think about going back to teaching tomorrow when every ounce of my being says I need to be here, but life goes on. Things may have stopped temporarily in the Grant household, but the world goes on around us and we'll need to go on with it. I've decided that everything will be OK, because it's easier to go along believing that than it is the alternative.

If those of you out there with a spiritual system would send a prayer up with Kailey's name on it, I'd be grateful.

Parenting is 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.