Hospital Day #2

I haven't followed many blogs. I've certainly never written one before. The ones I have read tend to recount hard times in friends' lives -- a wife's cancer course, postpartum depression, a prolonged and difficult adoption process. And now my husband (Pete) and I are facing what very well may be the most excruciating thing we'll ever have to face: our beautiful baby son's illness. I'm writing this for me, but I'm also writing it for our friends and family who live far away and who may want to share this experience with us.

Five days ago, Lively, now 6 1/2 months old, began having seizures. At first he sort of rolled his eyes back in his head, just a few times, but otherwise was perfectly fine. That was Friday night. I didn't think much of it. On Saturday night, he shrugged his shoulders while he rolled his eyes. This happened a several times, but still he was otherwise acting normally. Pete and I decided to call the doctor first thing Monday morning. On Sunday, a sort of flailing arm movement accompanied the eye rolling and shoulder shrugging. By Monday, he flexed his legs too. Pete took him to his doctor, who referred us to see neurology. On Tuesday morning, Lively had an EEG (an electroencephalogram, where tiny electrodes are attached to his head and monitor the electrical activity in his brain). This showed hypsarrhythmia, which is a special pattern that is diagnostic of something called infantile spasms.

Infantile spasms sounds fairly benign, I think. A spasm, a tic, seems like no big deal. Well, that's not the case, and Pete and I knew that right away. We have some friends whose daughter has IS, and so we understood how serious this is, how terrible it can be.

When I read about IS (again) yesterday, after Lively received this diagnosis, four words jumped out at me immediately. The prognosis is poor. That has not sunk in yet. This boy and I just met 6 1/2 months ago, and I cannot imagine a life without him. He is so perfect, so sweet, mellow, joyful -- literally the perfect baby -- and he has a disease that might kill him. He's undergoing a dangerous treatment (the only one with a chance of helping, right now) which could kill him too. And if he does make it through, there's a high chance of developmental delays, mental retardation, intractable seizure disorders, other terrible things. How can this be? I'm holding my perfect baby in my arms, nursing him -- you'd never know anything was wrong except that we're in the hospital and he has about a million wires coming out of his head. Oh, and the seizures.

The neurologist said yesterday, the ax just fell, now we have a long road ahead of us. (Gotta love the metaphors.) So welcome to the road. What should I call it? Lively Lane? A lane doesn't seem long enough. Maybe Highway Lively. I'm open to suggestions.

Lively has an MRI today. The prognosis is best if they can't find anything wrong, so I know what I'm hoping for today.

Please send good thoughts, prayers, meditations, love.