8 months, day 9 - CHoP

We spent most of today in Philadelphia, where Augie had en EEG (electroencephalography) and an appointment with a neurologist at Children's Hospital of Philadelphia. As background, Augie occasionally does a strange head tilt/jerk movement that's a bit peculiar, and it finally raised our concern level enough to tell our doctor. The pediatrician, on seeing video of the movement, thought it could possibly be some type of seizure, so she referred us to CHOP. We booked the first available appointment and off we went.

We started the day with the EEG. A friendly technician strapped Augie into his blue mermaid suit and started measuring and drawing on his head:

Then she attached a bunch of wires to his skull with some sticky goop, and the test began. Augie watched TV most of the time, though for the first bit there was a light just above his head which flashed on and off, like a strobe light. Thank goodness he had his rubber ducky to keep him company!

He was mostly fine through the test, though every now we could see him get frustrated and pull out his lobster imitation and instantly turn bright red, trying to wiggle. I'd sing to him and he'd calm right down, momentarily distracted from his restraints. They don't "do" anything during an EEG - they just measure what's happening in the brain as Augie does normal stuff like watch TV, close his eyes, and watch lights flash about 2 feet from his head (okay, so maybe the flashing lights aren't entirely normal).

We had to wait a bit before our next event - an appointment with a neurologist. Augie explored the halls while we waited:

 

We met with the neurologist (Dr. Yum - can a pediatrician have a better name?) after the EEG. Essentially, she is neither concerned nor unconcerned; Augie has shown none of the classical presentations of a seizure (or frequent small seizures) and his EEG was totally normal; she also said he exhibited "advanced development", and her examination of him was totally normal. However, she carefully watched one of the videos we showed her several times and thought that maybe she might have seen the tiniest jerk that was fishy, but also possibly not. And it's a bit suspicious that his head tilt/jerk happens only to one side. She wants us to keep a close eye on him, take more video if it happens again, and come back in a month for a repeat EEG and exam. 

We also think there's a chance that his weird head movements could be due to water in his ears, as they might only happen on days after we've taken him in the swimming pool or got his ears wet in the bath. We don't even know if that's a plausible explanation or if there's a true correlation, but in looking back, it seems like a possibility.

I'll be honest: it was quite a stressful (couple of) day(s) for us parents. We thought things would turn out okay, but that tiniest possibility that they wouldn't was nearly unbearable at times. I know that no child deserves any disease, disaster, accident, or atrocity; but then suddenly, for a second, you can imagine that something might be happening to your child, your beautiful trusting smiling laughing happy adorable child, and for those small moments there is no sense in the world, and there is no longer sense in your own life. I am almost unbearably grateful that things are probably okay and that our shining smiling healthy baby is still just our shining smiling healthy baby.

(A very special thanks to K, who went through this all with L, and provided information, support and love as we got ready for today).