Blaze’s Wild Ride

Official 1 year post op hemispherotomy update: mixed feelings 🤔 but overall very PROUD of what Blaze has accomplished in 12 short months.

A few weeks ago, we did an overnight stay for a 24hr EEG and CT scan. The scan was good, no signs of hydrocephalus. It definitely doesn’t look anything like a normal brain though! Crazy to see how well he functions after surgery!

The EEG unfortunately showed frequent epileptiform discharges coming from the remaining, functional side of his brain. This means there is abnormal activity that could become a seizure. This was devastating news for us because it means we can’t decrease medication like we were hoping for, and he’s still at a decent risk of seizures. BUT…he’s been seizure free since surgery. He hasn’t gone this long without a seizure since he was a baby.

We followed up today with his regular neurologist and the Rehab doctors as well as neuropsych and he is otherwise doing FANTASTIC! His physical improvement is huge, and most has come in the last few months. He’s far surpassed their predictions. He’s learning to ride a bike again (with training wheels), he’s mowing grass again with the help of a lightweight battery powered mower, and he got clearance from Rehab to go without his AFO brace!! That’s a big one for us because he has a fancy taste in shoes 😎.

Neurologist said he’s bummed about the EEG too, but he still thinks he will eventually be able to decrease meds, and he’s “putting into the universe” that we’ve seen his last seizure. I don’t know that I feel that confident, but I do know that we’ve saved his life in doing this, and that’s the most important thing. And his neuropsych evaluation showed improvement in a few areas, one was one they expected a decline in, not an improvement 👏🏼.

All in all, this is mostly good news, and we are going to keep moving forward. If a seizure comes, we will be crushed but we will get through it. Blaze is an incredibly determined boy, and we are so proud and in awe of him.

P.S. If you don’t know what a hemispherotomy is, I put details in the comments.

I’m late, but it was someone’s 11th birthday yesterday! (April 10th). I don’t know where time goes but somehow here we are.

I hope this year is a brighter, more peaceful year than this last one. It’s been the toughest one yet and I think it’s time for less excitement for a change! Nothing but rainbows and sunshine for year 11 buddy!

24 hour EEG time. Blaze says “I don’t want to be here, but I know it’s for the best”. 🧡.

He has grown so much in the last year. 1 year after his life changing hemispherotomy, 1 year of lots of ups and downs, 1 year of learning a new way of life, and 1 year of more successes than we can count.

If you want it bad enough buddy, it’s yours!!

A little photo dump from our adventure at Scene 75 Thursday night thanks to the AMAZING organization, A Kid Again - Southwest Ohio Chapter!

It was a school night so we were both so tired the next day but we all had so much fun! We rode the go carts (Twice!), played games, played Putt Putt and rode his favorite carousel! 🎠

It seems like such a little thing, but being able to go do something fun together without the stress of fighting a big crowd and spending a ton of money is invaluable to us after all the last few years have brought us. He can truly just go be a kid, a “normal kid” (if that’s even a thing 😂).

So thank you to A Kid Again and all of their volunteers who make it possible!

PS; if you want more info about what A Kid Again does, just message me or go check them out https://akidagain.org

We had our first family vacation in 4-5 years last week and it was SOOOO needed after all Blaze has been through in the last few years. Blaze’s hemispherotomy was 11 months ago, and while life certainly looks different now, it’s still a beautiful, blessed life!

I have so many photos to share, so we are starting with the first full day we were there, and the first time in 8 years thr Blaze has seen the ocean. We even found a playground with an adaptive swing set right on the beach! 🏝️

He wrote his own name in the sand, all by himself with a stick to celebrate. The water was cold, the temps were colder than normal, about 65 degrees out that day, but the Florida sun and Gulf of Mexico white sand never disappoints!

Just a very handsome boy and his adorable service dog. 🐕‍🦺

Donate to Support Graham’s Surgery for Jana’s Safety, organized by Kaytee Shelburn Graham is more than a service dog—he is Jana’s lifeline. Jana is a young la… Kaytee Shelburn needs your support for Support Graham’s Surgery for Jana’s Safety

I think someone really likes Uncle Clay’s new puppy!

Blaze and Panama enjoying the snow. She always come inside with a snout covered in snow 😂.