...damn seizures....

So I posted last Wednesday that Averie started having seizure activity in her shoulder. By Saturday night it had spread to her leg. We took her back to the ER , but were sent home when she fell asleep. The next night it spread to her diaphragm...causing erratic breathing. Scary enough that we got to test out our emergency plan for living out at the farm. Went off without a hitch...called 911 and met the ambulance halfway into town. Bonner did a great job as usual and helped us get her to Sacred Heart in Spokane. Since being here we haven't made much progress...these myoclonic seizures are very hard to control. Averie is remaining very much alert thru these, but gets worn out and has been sleeping for long amounts of time.  We are trying our hardest to get these to stop and she's only peaceful when she's asleep. Tonight was a bit better and she was playing and goofing off despite the movement in her upper body. She is on several antiseizure meds, including Lamictal, Kepra, Versed, phenobarb, and dilantin. She also has a NG tube in to administer her meds and provide nutrition.  I hope that we hear back from Stanford or get approved for compassionate use of EPI-743. I watch her and I just want her to be able to enjoy being a little girl! I want her to go to school and make friends. I really want to kick Alpers right in the tookus!