Monday, December 14, 2009

Neuro check

JB's been having night terrors. He wakes up 2 or 3 times a night screaming and crying. There's a chance this would have happened anyway, but I'm surprised it didn't happen sooner with all of the changes in the last few months. He's been potty training too- so there's that, in terms of stress. And Katy and I would both give odds that his ears are full and he'll need tubes again.

Despite all this, he is doing pretty good in underwear. Yesterday we had a shit-storm blow out, LITERALLY. But that only happened once before and this time it was really my fault... I mean, it was the first time he even SAW a remote control car... I'm surprised his head didn't explode. I should'a been toileting him every ten minutes.

Today was ML's neuro follow up. I cried this morning (partially) in anticipation. It was really all that we hoped for:
1) He looks great
2) He's growing out of his phenobarbital dose, so we'll titrate that down to gone.
3) A repeat EEG is unnecessary unless he has more seizures.
4) A repeat MRI would only be for "curiosity's sake" and isn't worth the risks associated with necessary sedation as long as he continues to develop normally.
5) Developmentally, he seems normal.

He's such a sweet, happy baby, it's hard to imagine there could be anything wrong with him. The stressful part has not been imagining how it might be if there were something wrong with his brain (you've seen the videos of him singing... Who really gives a shit if that's who he is, that's who he is)... The stressful part has been imagining how it might be to have to watch him be poked and prodded, and tested for more of his life.

It is a relief, but it is also an exhausted exhalation that will not entirely give up the concern until he is long off the Meds without any more seizure activity.

Sent from my iPhone


Sarah said...

sorry about the night terrors

but YEAH about the checkup for ML!! keeping my fingers crossed that all continues to look up for you!

Anonymous said...

That's awesome that things are looking tentatively okay. Hang tight. Parenthood (and toilet training) is a constant reminder that life is not about you. We schlep to the hospital twice a week for speech therapy and in the beginning I felt like I had to defend against more intervention than I was comfortable with for my son. I like my quirky best pal and will do anything I can to help him be himself in the world to his greatest capacity whether that be Harvard or trade school. Sounds like you already know all that, but remember to trust your instincts above all else. No one knows your kids like you guys do. Merry Christmas.