Friday, November 20, 2009

Our First Visit to the Booth

By the time we made it to the audiologist's booth at Children's Hospital, I had already come to terms with some level of hearing loss. Or maybe not. The thing was, I didn't understand hearing the way I do today. In the time between scheduling the appointment and having it, there was a considerable amount of family discussion.

"Well, she heard THAT," we'd say of some noise. She'd turn her back and I would call, "Julia." She wouldn't even flinch. That was my major sign.

The night before the appointment, I had a heart-to-heart with my husband. I told him that if she could hear normally then we had big problems. Julia was engaged and interested in a lot of things. Talking wasn't one of them. For a year of speech therapy in our home there had been little gains, but on the night before our diagnosis, I felt like I was banging my head off of the wall. She had become completely disinterested.

Julia sat on my lap in the sound proof booth. Our audiologist went into the other room with all of her gadgets and played whirling whistles over speakers. They were very loud in the beginning. When Julia turned toward the speaker that was making the sound, she was rewarded with a little mechanical character that lit up and did a dance.

As the sounds got quieter, I got a heavy feeling in my stomach. She's failing pretty bad, I thought.

But even then I had strange conflicting feelings. She was just a baby (in a month she'd turn 3-years-old). Maybe she just didn't like the dancing bear. My brain couldn't choose which disability I preferred for my daughter: hearing loss or that other thing. The other thing being whatever was keeping her from learning to talk. But maybe there was no other thing, and that was what I held on to.

About now I would like to go back and shake the past me. I would tell her it will be okay, this is going to work out. But that day, the whole thing seemed like it was falling apart. I thought she was healthy and she wasn't. I thought I had done a good job being pregnant and I didn't.

The audiologist leaned into the microphone and told me she was coming over to our room.

I took a deep breath and very specifically warned myself not to cry. "I found a moderate hearing loss in both ears," the audiologist said. There was a lot more information that day. She used little rectangular block headphones to transmit the sound directly to the nerves. She could tell that this is a nerve problem, not some little tube that was too small in my baby's ear. I was told that it is not uncommon for a newborn to pass a hearing screening, like mine did, and then find something later.

She reassured me that we'd found it sooner rather than later. That intense speech therapy would catch her up. I had gone inconsolable and was trying to hide my tears in a tissue.

I couldn't even talk to my husband on the drive home. Saying it out loud made me weep so badly, I thought I would probably wreck the car. I whimpered that I would just talk to him when I got there.

The coming months were tough. We scheduled an ABR test and had to cancel it due to an ear infection. In an Auditory Brainstem Response test, they sedate the child and play a series of clicks while measuring brain activity. It is the definitive hearing test before they will dispense hearing aids for a child. In the wait for the ABR we were still debating the results of the booth test. I was pretty confident, since I was there, that the audiologist knew what she was talking about.

The results were confirmed. As Julia has grown, she does more and more "big girl" testing in the booth. She's identifying pictures to show how well she can discriminate sounds. She's still listening to those whistles, but now she feeds zoo animals. "Give the banana to the monkey," we'll prompt her.

She's not great in the booth. I've never seen another kid do it, so maybe she's a rock star in there. But she gets bored with it. I feel incredibly nervous watching her, just hoping that nothing turns up to indicate a progressive loss. But that is the power of the booth. Every six months it gives us good news, or not. We go back on Monday and hope for more good news.

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