We have been home for a little over a month as of writing this. Our biggest goal was to keep Aiden home and comfortable, and I think we have finally found balance that is working for Aiden.

We have taken our little Stinker Man on a lot of adventures since we have been home. We have gone on trail walks so he can see his favorite trees and hear the birds singing. Our barn friends held a benefit carnival for Aiden that had horse rides and all the fun games! Our friends at the Fire Department threw Aiden a charity cornhole and dart league. Most recently, Aiden went on his first cruise down a local river with friends and family.

Initially, managing Aiden’s seizure clusters at home was quite challenging. During the first few weeks, he would frequently experience clusters of five or six seizures within an hour, requiring rescue medication. However, since switching to the ketogenic diet and his current medication regimen, his seizures have decreased significantly to just one or two every few days. Controlling secretions has become more difficult, though. We have increased both the duration and frequency of his vest therapy and cough assist, which provides Aiden with several hours of comfort and clearer breathing. He also regularly receives nebulizer treatments, and we make adjustments to his wedge pillows to keep his airways as clear as possible.