...and it did. Luella had a seizure tonight. We've been waiting for it to happen. She's been averaging about a seizure a week all summer but today was day 16. She hasn't gone this long without a seizure since back in May. Thankfully it was short, one dose of midazolam stopped it. We were at Grandpa and Grandma Johnson's, Jim's brother and family are visiting one more time before heading out east again. Luella slept, then woke up and would only eat cheese and Cool Whip for supper! Yum! It's okay... soon she won't be able to eat whatever she wants. We are gearing up for the LGIT diet, still trying to work out sugar-free versions of some of her meds. We also want to get some baseline labs done. Lots to consider....
Also want to ask that you would keep another Dravet family in your prayers tonight. Eleven year old Molly passed away. She was doing remarkably well... and then this happened. You can watch a video of Molly from last spring. What a strong little girl!! We need to FIGHT this Dravet Syndrome!!!
Oh that feeling of knowing one is coming...and just waiting.
ReplyDeleteSo sad for Molly's family. She is a beautiful girl.