May 28th - Kari had to go back to the hospital to pick up something she forgot and took Grandma Marnie and Drew with her. When they arrived home Drew was enjoying a well-deserved nap in the back seat. When Mommy went to take him out she noticed his left arm flopping about gently.... Oh dear. Back to the hospital.
After a few more medicine changes and two overnight EEG sessions to measure his brainwave activity all we knew is that Drew was having seizures that were constant and nothing we were trying was working to stop them. It affected mainly his left arm, but occasionally his left leg. The dr. said Drew has a condition called EPC (Epilepsia Partialis Continua) - simple partial seizures of different body parts that don't stop, and don't respond well to medication options. Well, we grieved over that too, that we might have a child who would have constant seizures on his left arm, but were hopeful at that time that maybe surgery or some medication we hadn't yet tried could help, or even that we could help him learn to live with it. The primary disconcerting issue at this point was the thought that EPC was only a symptom of something else... now what were we talking about?
Drew did ok for a week, still seizing but learning how to work with a shaking arm. After the first few days, he starting trying to hold toys again in spite of the fact that occasionally he would throw toys over his other shoulder and that when trying to hold something to his mouth he frequently overshot and clunked his cheek. He was such a good sport that he didn't even seem too annoyed and spent a good part of his days charming nurses and doctors, playing peek-a-boo with them and giving fives. He figured out how to pull his blanket up over his face when someone was coming into his room and then peeked out through the holes to figure out if he wanted to see them or not. What a character, and definitely a real trooper. He had doctors and nurses coming in just to check up on him and say hello.