Throughout all of these activities besides the IVIG Emily has remained at home and fearful of daily activities, routines and going to school. I'm not going to be able to explain it all here as I really don't even have a true grasp on it yet myself, yet I know that just when we thought we might have figured it out and Emily might be turning a corner we thought wrong.
Monday Emily had a really bad episode and today it was a challenge even to get her convinced it was okay to go to the hospital to get her renal ultrasound and dexa scans in preparation for her child developmental clinic next week. Her head still hurts from yesterday's episodes, she's still dizzy and noise and light sensitive. Every day and parts of every day are different and have their own challenges, yet the goal remains the same: to help Emily live her best quality of life and right now that goal needs much tender loving care and work.
