Never thought we would get to this point. My daughter suffers from a rare form of epilepsy, Jaevons syndrome. She was taking so much medicine she slept for up to 20 hours a day. Now, we have been referred to a neurosurgeon who has switched up all her meds, and further testing is needed to decide on which brain surgery may benefit her. She also suffers from severe migraines. With testing and surgery, I have missed a lot of work and am very blessed to have coworkers who donated PTO to me. It's almost gone. New meds have caused her myoclonia to worsen. Extended stay at the hospital is happening after school lets out. Any help is greatly appreciated.