Ok, it just hit the 48 hour mark. Rosalie has been connected to the EEG machine, two meds were removed, she has been sleep deprived, hyperventilated and had the flashing lights. She had a few brief staring spells yesterday, but so far only a few upon waking today. The type I am most concerned with are the ones where she stares blankly with no comprehension of the outside world, and when it is over she can’t keep her balance. Those are the ones that have been happening frequently at school and cause sheer exhaustion. Those are also the ones that are not showing up during this EEG study.
Meanwhile, she was so happy when I brought up a “Backyardigans” toy from the gift shop. The nurse played with her long enough for me to run down really quickly. I also got a stuffed Bob and Larry from Veggie Tales for her. She watched an episode of Backyardigans on Netflix, then she acted out the show with the stuffies she got this morning.
I am so full of anxiety. I am constantly fretting…what if she doesn’t have a seizure during this video study? I want to turn it all over to you as I remember passages like the one where Jesus says
“What one of you can add an hour to his life by worrying?” after talking to the people about how you take care of us. Thank you SO much that Rosalie has resigned herself to this long term stay and is happy and hasn’t had a single meltdown since leaving home. I give my worries to you, my frustrations, my wandering, wondering thoughts. I ask you to help me take these thoughts captive and give them to you. You know I’m not even remotely perfect, so I thank you for the grace to go forward when I just want to give up, especially in my chronically sleep deprived state! In Jesus name bow down and pray, Amen.”