Thursday, September 20, 2007

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."


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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Blogger ms-teacher said...

I am the older sister of a brother who has Prader-Willi. Over the years, my parents have experienced many doctors who always seemed to focus on the bad and almost reluctant to share any of the positive.

My parents learned over the years that in order for him to be successful, they had to be his biggest advocate. They were told he would never live independently and yet, he has lived in his own apartment for over a decade.

Your baby girl is extremely lucky to have parents like you and your wife.

4:27 PM  
Anonymous Anonymous said...


Just know that our thoughts are with you.

6:03 PM  
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7:01 AM  

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