August 31, 2013: Chase had been up to 3 to 8 clusters of spasms each day, usually 3-12 spams in each cluster. The first week on Sabril (Vigabatrim) was promising - they went down to 1 or 2 clusters a day. However, they didn't stop and around his first birthday on September 7th they progressively increased. That was a somber celebration for Tom and I, as we were trying to put on happy faces for family and friends during Chase’s birthday celebration but knowing things were going downhill very quickly. He was starting to fall over and hit his head all of the time, so we had to set up a safe blocked-in area in the living room and we were worried about sending him to school. During the second week, he suddenly took a turn for the worse. The clusters started having up to 30 spasms and the last few days before getting back to Mayo for the follow-up EEG, Chase was basically either sleeping or having seizures. When he was awake he would just walked in circles or bury his head in blankets on the floor. His sister Anna would constantly yell out to us “Chase is doing that THING with his head again!” Again, we were getting so used to it, we did not notice how bad it was really getting.
 |
| Chase's First Birthday |
No comments:
Post a Comment