I wanted to thank everyone again for all the prayers!! I'm feeling much better about all of this - I can finally talk without breaking down - maybe a few tears but I can still carry on a conversation! We have a lot of unknowns at this point but I'm trying to focus on the positive. Right now Luella seems so normal, I would even say ahead of some developmental milestones. We laugh at her when daddy does something she doesn't like and she runs to mommy and says "Da-da naughty", or when she works so hard at putting a couple tinker toys together then proudly holds it up and says, "Got it!" Or when I ask her what her name is and she replies "Luella!" Or when I ask for a hug and she wraps her little arms around my neck and pats my back. We are soaking it all in and praying that we don't see all that begin to fade away at some point. (Luella turned 21 months on July 21.)
A lot of the really bad Dravet cases out there involve kids who have MANY seizures a day. Luella's new drug, Depakote, seems to be working really well. Next week I hope I can report that we went the entire month of July with only that ONE seizure on the way home from the Black Hills. That is awesome!!
One thing I am concerned about, is her twitching and jerking all night long. It has gotten bad. Our Mayo Dr. thought it might simply be because of her low iron causing Restless Legs. I hoping that's all it is but I'm concerned that it could be myoclonic seizures or something. It's more than just her legs that twitch. I don't know how the poor girl wakes up looking rested. I haven't been getting much sleep because I'm always watching the video monitor. Then one night last week as I was checking on Ryker before going to bed I noticed that his feet were constantly twitching too. I think I stood there for 10 minutes and didn't see his feet be still for more than 30 seconds. Maybe it is just low iron? Since then I haven't seen him do it as much as that one night. I just don't know. I'm taking him in next week to get his iron levels tested too. Luella has been on an iron supplement for 2 weeks, but it can take like 3 months for iron to build up again.
On August 8th we'll be back at Mayo. Luella will have a 24 hour EEG study. We are hoping to find out what is going on when she is sleeping.
I can't thank you enough for all the prayers! Keep them coming (I know you will)!!