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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The Next Doctor’s Appointment

My wife met me at the door the other day with tears in her eyes. Never a good sign.

The developmental pediatrician had called with the results of the MRI. Dear Daughter has scar tissue on her brain, and the working theory now is that my wife was infected with a virus called cytomegalovirus (CMV) when she was pregnant. It’s been linked to premature labor (DD came 6 weeks early) and hearing loss, which is also my daughter. There’s also a strong correlation between CMV infection and mental retardation, though I’m not sure I believe that one, because my daughter seems like a pretty smart kid.

Now Mrs. is blaming herself. I’ve tried to talk with her about how that’s a ridiculous game to play that won’t change anything, but she’s still beating herself up pretty hard. I don’t really know what to say to make things better, beyond what I’m already doing. She's sleeping a lot and trying to get back to center, and I let her because she's my center too and this feeling of being adrift hurts.

I didn’t know how much I didn’t know until I became a parent.

To confirm the CMV diagnosis they needed a urine sample. Dear Daughter's not potty trained, so we had to get a urine collection bag that adhered to the skin. Put bluntly, we taped a ziplock to her cooter and waited for her to pee. Hopefully we’ll hear results on that next week. I don’t know what this means for the earlier suspicion of DiGeorge’s Syndrome, but the blood work on that should be back soon, too.

Our new specialist to add to the list is a neurologist, who will take a closer look at the MRI results and administer a CAT scan so that we have a better picture of what’s going on with the brain. We’re also supposed to see a geneticist depending on how her blood work comes back.

The more we know, the less we know. The more I know, the less I understand. I get to my feet, and there goes the rug one more time. The knowledge as power meme really isn’t resonating with me right now.

One day at a time.

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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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