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.
It was VERY important to use EVERY can of sprinkles!
Here’s to hoping that we spend many more birthday celebrated outside hospital walls.