At the end of February, we met our neurologist, Dr. Walleigh. She was great, and has worked with Batten kids before. We also confirmed that Lilly is having absence seizures. She has started medication already. They will both have an EEG and an MRI over spring break. The fun part: The EEG is a sleep deprived EEG. They are only allowed to sleep for 4 hours the night before. This should be fun! The girls are excited to stay up late, go to a movie, eat pie, and go bowling. Then get up early, have hot chocolate and go to Walmart to shop for a new toy at 5AM. Mom and dad are drawing straws to see who gets which shift.
On Tuesday, the rest of the family spit into tubes and they were shipped off to the lab. It will be 2-3 weeks of waiting to learn if any of our other girls are affected, carriers, or unaffected by Batten. I think this will my record for holding my breath. I am holding on to the fact that they have a 75% chance of being ok.
The irony is not lost on me that we will learn these results during Holy week, or right after Easter. So much life and death are revealed to us during this week in the Church.
Our genetic counselor has asked us several times if we are sure if we want to know. YES! We want to know, now. We can't imagine waiting another 5 years to see if Zelie shows symptoms, al the while questioning behavior and sitting in anxiety.
And so we wait. And pack. And pray.
On another note... we had bracelets printed with this website on them. It has been a way for us to raise awareness and to direct people to the site to let them know what is going on with our girls with out going into it in front of our girls. We would love to see our village near and far wear them. You can purchase them here.