We're still trying to get the seizures to stop. They have slowed down considerably, but still occurring 2 to 3 times an hour. She has some good people working to figure it out, and is currently hooked up to a bedside EEG that has tiny wires that stick on her head in 4 places and go under her skin on her scalpš. Kevin and I were helping to hold her still while the nurse put the wires in her head, but we had to tap out and let another nurse help. I don't feel the need to describe any feelings here, I think you all can guess super accurately what that experience would have felt like for us! That's why God made people with gifts for nursing. We have found such treasures in our nurses, and I can see Annelise loves them too!
❤️.
They haven't exhausted all of their options for treating the seizures by any means... They are discussing adding another med on top of the phenobarbital. The hardest part is the waiting, and trying new things, wondering and hoping if this new strategy will help.
We're being told that this won't hold up her Tuesday 11:15am (9:15am California time) g-button surgery. Not sure if the seizures will do anything to hold up our return home. I'd like them to be under control before we go, and these doctors know her already, so I'd like them to continue working their plan with the neurologist here... But not sure how long that will take, or if the doctors will think it's important for her to stay. This is another topic that I would love to have the answers and control over. My dear friend passed on a quote that fits quite nicely here, "God is still writing your story, quit trying to steal the pen". All we can do is trust God, ask for wisdom as we work with the doctors, and love on our sweet baby. But when all I can do is trust the maker of my whole life, who loves me and loves my daughter even more than I do.... that is more than enough.
Annelise's stuffed animal fan club.
she gets formula in her belly right now, but she loves her tastes of real milk! 
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