" Haha, you think you can hold me with these stinkin' sheets! " Ben's new neurologist ordered a 30 minute awake EEG , a fairly routine test for people with epilepsy . I brought reinforcements in the form of Kim and Bob. Kim is Ben's longtime caregiver and Bob is his favorite character on the Bob the Builder show. Even with backup and distractions, they brought in another technician to hold him down. Ben dislikes anything on his head, and so he fought to take the wires off his head and kicked to try and get off the bed. " I will let you beat me this once! " We had called ahead to ask about using a papoose, but we were told that they no longer provided one, but they could provide us with sheets to use. Kim was the ingenious one and wrapped Ben like a burrito. Something I did learn through this process was about Clinical Seizures and Sub-Clinical Seizures . Ben has both - his clinical seizures are atonic and this means they are characteri
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.