Wednesday, October 29, 2014

One year later

It's been a year.
A whole year!
As a kid, a year was an eternity. Now as an adult, a year feels like a week and a day goes by with a blink. I still feel, with my whole body, the anxiety that I felt on October 30, 2013. This time last year, we were each sleeping in our own separate twin beds at David's House waiting for the alarm to ring to start the day of Cameron's brain surgery.

He had his mohawk. He had his Red Sox blanket and his comfy monster jammies. We had been overwhelmingly supported by our friends and family leading up to, and preparing us for the coming weeks. We had no idea what to expect that night, and that was terrifying.
It's pretty crazy how it all unfolded, honestly. Cameron loves looking at the scrapbook that I made, but he doesn't remember anything about those days at CHaD, in the PICU or how incredible it felt when he got to come play basketball outside...two days after having brain surgery!

While we cannot totally celebrate Cameron being seizure-free one year later, we CAN celebrate that he is complex-partial seizure-free! Cameron had always had two types of seizures, complex-partial seizures and focal-motor seizures. Since his surgery, he has not had even ONE complex-partial seizure. This is the type that he would have frequently. It would slow him down for 30 seconds to 1 minute, he'd barely breath and got super hot and sweaty. The focal-motor seizures are more like what the average person thinks of when you hear someone had a seizure. It's not a grand mal seizure, but he loses consciousness and the right side of his body twitches. In our experience, these seizures only stop with the use of his emergency medication. We knew going into the surgery that there was a 50/50 chance it would "cure" his epilepsy, so the fact that it has cured one of the types of seizures, is fantastic!

In the last year, Cameron has had 6 focal-motor seizures. That sounds like so few, for a kid who could have 6 seizures in a day before his surgery, but it is more focal-motor seizures than he has had in his life before one year ago. These seizures are more dangerous and have no warning, unlike the complex-partial siezures, where he'd started to be able to tell us he didn't feel good before it happened. Two of them have happened at school, most recently this past Monday, Oct 27th. Cam was playing outside and fell over in the sandbox. Luckily, Shawn's mom, Cameron's Grandma, was already at school to pick him up and witnessed him fall over. She yelled to the teachers who called the nurse and they administered his emergency med on the playground.
I had Shawn take a picture of him sleeping on the couch Monday evening. I felt like the image of him sleeping on the couch with his Superman cape on, was so powerful after spending the previous day at CHaD celebrating the CHaD HERO event. My little Superhero...

Cameron had an appointment with Dr. Morse, his Pediatric Neurologist, in early September. Ironically, Cam had a seizure that morning - the first of the two that have happened at school. Dr. Morse decided to increase one of his two meds and wait for a "trend" before we do anything else. This time around, after Monday's occurrence, Dr. Morse decided he wants to have Cam's med levels checked, so we will be making a trip to the lab this week to have his blood drawn.

So, one year later, here we are.  I took this picture while he was laying across my lap last night. You can see that the scar has healed really nicely, for the most part. He is very aware of the area by his ear, as I think it's still pretty sensitive.

I still can't believe its been a year. 

I really wanted to thank everyone who donated to support CHaD, leading up to the CHaD HERO race this past Sunday! I ended up raising $675, which was just a tiny piece of the almost $704,000 and counting, that CHaD is still collecting as part of the CHaD HERO. I got to run through the finish with Cameron, which was so special. When we got through the finisher's chute, he looked up at me and said "Did I help you run the fastest you could be??" He was so proud of himself, and I was so happy to hold his hand as we crossed the finish line together. 

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