Miracle Baby

I usually dread seeing Kyle's neurologist. She hasn't always been very positive about Kyle's long term prognosis. She told us before he was born that he'd be at high risk for a multitude of issues, mainly epilepsy (possibly retractable- meaning not able to control with medication), cerebral palsy and developmental delays. She said it was possible that he'd have milestones that he'd never hit. That he could be severely intellectually disabled and unable to ever care for himself. He might not talk. He might not hear or see. 

Today was different. She said seeing him was the highlight of her day. That she'd never match his MRI scans to his current abilities. That he is a "miracle baby". 

We agree. "Kyle" in Yiddish means "victorious". We didn't know this when we chose his name but it's something we've clung to since first receiving his diagnosis at 28 weeks pregnant. Our baby boy would be victorious. His life mattered. No matter what. 

On Tuesday he will have a MRI and MRA. The MRA is to look for any recent ischemic events. Three weeks ago, I found Kyle in his swing looking like this...

Only half of his face seemed to be working. We took him to the ER and the asymmetry had already faded away. He was sent home. Today the neurologist noticed that his left leg is smaller than his right and he doesn't seem to be using his left side as effectively as his right. He can freely grab objects with his right hand, but has problems grasping things he wants in his left hand. It is VERY unlikely he had an event, but we are looking anyway. And she wants the 23 hour eeg to rule out seizure activity. 

Thankfully, we've managed to stay out of the ER since our last neurosurgery visit. We see the surgeon again on Tuesday and will be celebrating this feat. I feel like Kyle deserves a medal, but "miracle baby" will certainly do! 

What's next:

-MRI/MRA/Neurosurgery appt Oct 28

-23 hour EEG to be scheduled