July 21, 2010

The new Bertrand, and our biggest fear

It's safe to say that we have a whole new Bertrand on our hands.

For most of the day, Bertrand is happy.

He engages socially.

He reciprocates emotionally.

He's been exploring his environment.

The seizures disappeared completely under ACTH, and when we weaned him, the rage subsided, leaving us with a normal "4-month old."

We have never been so hopeful for Bertrand, and never happier as parents.

But, there's also fear hanging over us.

For the past couple nights, he's been having absence seizures again. Unlike two months ago, these seizures leave him noticeably disoriented when he comes out of them.

For the first time, I can see terror in his eyes.

For the first time, he seems to have a sense of what's happening to him.

We're afraid that as the steroid ween continues, more seizures will return and turn him back into neurological jelly.

In case we've only got a short window of this happy, loving, exploring child, we're making the most of it. We're getting up early and staying up late to play with him. And, we're cramming as much development and progress in as we can.

Bertrand deserves no less.


  1. Yes.

    Praying for Bertrand.


  2. I hate that we have to be optimists...and realists at the same time. It's exhausting!
    Yeah for new skills!

  3. I love you all so very very much.

  4. Wow, Bertrand looks so much older - even before reading your descriptions I was thinking that he looked much more aware of what was going on around him - like something had clicked developmentally. I hope the seizures keep their distance and that the cord blood is everything we've heard!