There was a man at the Fedex house on Monday morning who helped me get our belongings assembled before coming over to the hospital. He was very kind and kept an eye on Alli while I loaded up the car and put together the things we needed to bring with us in the morning. I happened to run in to him this evening. He walked by my room and I waved him in to see how things are going. He is here with his brother and nephew from Tulsa, OK. His nephew is 18 years old and has seizures. At 8 years old he had a section of his brain removed because they thought that section of the brain was causing his seizure activity. Unfortunately, that proved to not be the case, as he is still having seizures. To boot, this kid's mom died 6 months ago from cancer. So, the uncle is here helping to support the dad and nephew through the process. Please keep this family in your prayers. They have been trying all week to provoke a seizure in his nephew and have so far been unsuccessful. He has gone 18-19 days without one, which is the longest he's ever gone. It is incredibly frustrating for them.
Today was a quiet day. They continued to monitor Alli by EEG. I pushed my red button a few times and we've made some adjustments to her medication. We are in the process of increasing her depakote to 750 mg/day. Tomorrow will be her first full day on this dose. We are hoping to see a reduction in myoclonic and atonic seizure activity. Her myoclonic seizures manifest by an extension of her arms. Her atonic seizures manifest as a head drop. Some of these movements are very subtle and hard to tell that they are even seizure activity. It is harder and harder to tell when to push the red button.
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