Adventures in EEG land.

I'm a solver, a thinker, a do-er.  Not because I feel like things need to be solved. Or thought through, or done. Just because it is in my nature to do those things. I do them without thinking. I step on peoples toes unknowingly, offend on accident, do a whole lot of planning and thinking, and solving that is probably unnecessary. 
And then I had Emmaus.  I cannot solve her problems. I cannot make her stop seizing-
 (OR MAKE HER SEIZE as we are finding out this week). 
 I cannot think enough about the decisions we are facing with her to ever make the "right" decision. 
Getting the EEG leads placed on her head
I know she needs me to DO more. But despite her special circumstances, I still have to work. So I do what I can. 
A lesson I am learning not so gracefully.  
Always a happy camper- unless she is stopped up-
This last week when she was sick and inconsolable I cried a lot. Cried cause I had to be at work when I knew I should be with her. 
Cried that she is my first baby and my heart wants many- but her challenges make that thought seem impossible, and daunting. 
Cried from the injustice of it all (I know that sounds so dramatic-but it truly is how I was feeling). I cried because I have a 15 month old who will need me for a life time and I am already exhausted. Sure we have good days, and bad days, but baseline I am exhausted. 
Pet therapy- I am trying to convince my mom to do this with one of her dogs.
Today a verse from 2 Corinthians has just been in my head, in my heart. 
"Where the spirit of the Lord is, there is freedom"

Freedom from exhaustion, from seizures, from sickness, and TS, from dreams that seem distant, and hopelessness. 

FREEDOM. Doesn't that sound lovely.  I can feel the tension leaving my shoulders as I dwell on that thought.

We can't use our computer in the room and so we watch netflix on our phone and text each other- cause we can't talk or she might wake up LOL! (or its not really funny-but I think we are so tired all we can do is laugh!)

 So the stay is going well. Sorry for the random pictures in the random post. But I had to get out the room and blog. 
Things are going well here. We need her to have a few more "typical" seizures. So we can get a good picture. Dan and I both have to work on friday so please pray for those to happen soon. We are majorly decreasing her meds and she got an IV just to be safe incase she starts seizing a lot without them. Pray she seizes more so we get a good picture and they can make a good surgical recommendation.


  1. Praying for that and so much more for you and your sweet baby girl.

  2. Oh the stories I could tell about things that have happened while Avery has been hooked up to VEEG (maybe a total of two or three? weeks when you add up all the stays over the past 6+ years?)!! My husband makes a lot of excess 'noises' that have all been captured on audio/video. . . I wonder what the people monitoring her seizures think!? We have also joked that all young couples should have to spend 48 hours, bare minimum, confined to a tiny room with a baby hooked up to 60 leads, and if the baby happens to be mobile, spend those 48 hours chasing and untangling said baby from the leads 4 billion times! It would sort out the ones meant to be together, ya' know?

    You guys are amazing, and the proof is that sweet happy little miracle God has given you! Her pictures always put a smile on my face! Thanks for sharing her and her story with the rest of us!



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