"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Tuesday, July 5, 2016

Day 122 was "The Day"

Well, tonight (Tuesday) was the end of our longest seizure-free run ever - Luella made it 122 days. Shortly after falling asleep tonight Luella had a seizure. We had a bunch of family visiting this week for Jim's parents' 50th anniversary celebration. We had several people here and we're visiting in the living room. At 9:22 her alarm began to ring and it kept going. I listened in the monitor and I could her her gasping. I'm running up the stairs praying I'm not hearing what I am hearing. Then I turn her lights on and pull her blankets back to see her eyes wide open, fixed. Gasping. Seizing. Sadness hits me as I know I will have to tell her tomorrow that we stop counting and start over again. I'm thankful that she won't remember this. She won't know that I had to give her two doses of her rescue med to stop the seizure. I wonder if she will feel any different in the morning? If her body will somehow let her know that it did happen? This was hard on me tonight. I didn't want to see this. I wanted to pretend she was healed. That it was done. That Dravet wasn't a part of our lives.... but it is and it will be. This is why we fund raise. This is why we work hard for a cure. Thank you again to everyone who helped make our "a cake 4 a cure" fundraiser a success. We appreciate all the support and more than anything we appreciate your prayers. Luella's prayer at bedtime was "to have a fun day tomorrow without any seizures." I pray that will be the case and we can once again strive to beat a record!

1 comment:

  1. What a great picture of Luella! Where did you get your cute epilepsy ribbon garden thing?
    So sorry to hear that the streak has ended but wow!, what a streak it was :) That's so awesome and maybe it will be another 121 days before the next one :) Any seizure is one too many but wouldn't it be great if she averaged only three a year?