What a difference a year makes!
Last year we spent Chuck’s birthday in the hospital with G. He had taken 4 ambulance rides in 3 days. We could not get the seizures to stop and his emergency meds were not making any impact at all. Chuck spent the nights at the hospital while I came home and cooked his keto food and got a good nights sleep. Then Chuck would come home during the day, try to work a little bit and come back at night. It was tough. After the seizures were finally under control we went home with a plan to start the process of getting a VNS for Gabriel. VNS is a small device(think pace maker) that would be surgically imbedded and would send electrical pulses to a specific nerve. There was a chance that it could help with the seizures. It seemed like the next best step.

At our next visit with Gabriel’s specialist we asked again (for the 3rd, 4th or 5th-I can’t remember how many times we asked over 6 months) to try Felbamate. The doctor agreed, telling us nothing would change. That was over 10 months ago! The day before G started that medication was the last day he had a seizure!

Fast Forward 12 months from the hospital stay.

He made Daddy’s Birthday Cake!

He took the job very seriously 🙂 Wearing the Ove glove oven mitt the whole time. He insisted you have to wear it when you are cooking 😉

It was VERY important to use EVERY can of sprinkles!

He was so proud of his great creation!

Daddy loved it too!

Here’s to hoping that we spend many more birthday celebrated outside hospital walls.

Whew…what a year 2013 was! We began the year in the hospital after several months of seizures ramping up instead of stopping. Gabriel started a new school in Feb-he missed as many days as he attended and spent the majority of the time asleep. In March Gabriel started Felbamate and the seizures STOPPED! We have not had one since! DREAM come true! After 3 months we got to wean him Keppra…great results…he had more energy and became more physically coordinated. After another several months and LONG discussions with doctors, we got to wean the ketogentic diet. Felbamate was the BEST change but getting off the diet was a 2nd close! Gabriel has done nothing but flourish since we started the wean! We have been officially off for sometime now and he is doing AMAZING! His interpersonal interactions and problem solving skills are growing in leaps and bounds! YIPPEE! So amazing.

When Gabriel first got sick, a good friend of mine got to take a dream vacation to Costa Rica. This girl deserved it! She had survived several really tough years! I remember at the time thinking maybe someday we can take Gabriel on a vacation again….and then after starting the diet. I had an official bucket list wish…

To take Gabriel to Disney world, seizure and diet free!

Later this month my dream is coming true! Gabriel qualified for a Make-A-Wish Trip and our family gets to spend a week in Florida. It is so exciting! The process has been so amazing!

On top of my Disney Bucket list wish coming true, Chuck surprised me with an amazing Christmas gift!…..

I am going to have the opportunity to have LASIK eye surgery 🙂 EEEEEE.  Many of you reading this helped make this happen…I am forever and overwhelmingly grateful!

To be honest, I had come to the conclusion that this bucket list item just wasn’t going to happen. All $ towards medical needs would be funneled to giving Gabriel every possible resource for a great, healthy and long seizure free life and that was fine.

I wanted to include these bucket list stories for anyone who is in a place that bucket lists or hopes and dreams seem out of reach right now. Maybe we are the one’s living a dream you are afraid to dream right now, I would encourage you to keep the dream.  The Disney wish seemed totally INSANE last year and I had literally giving up on eye surgery. Pinch me I must be dreaming.