It’s Odd To Start In The Middle Of A Story: An Update On Malia’s Journey.

Starting in the middle of our story is a bit odd, I agree. In a way it felt natural though, 'here' is where we are now and I want to share this littles girls determination, grit, sparkle and shine while not only handling her everyday life, but also her ever-changing epilepsy story.

We have officially checked in for our extended EEG at Seattle Children's Hospital. Spirits are up and Malia is really enjoying her time here. She likes it so much, she has even asked if we can move here forever. She gets to have a bed that moves up & down, all the arts and crafts her little heart can handle, room service, and a team of very helpful nursers and doctors who talk with her about her favorite thing at the moment - Cinnamoroll!

We have completed the PET scan, slowly dosed down all of her medications and are now completely off them. We then waited a day to hopefully capture an episode but, have yet to see any. Sleep depravation was added and still no sign of a seizure yet- I never thought I'd be the one praying for an episode to happen, but here I am. The doctors are hopeful that we will get some activity in the next couple of days and we NEED them to be right. Our discharge date is only a couple days away now and if nothing occurs we will have to come back for another week to try again. That's definitely not ideal in our situation since both Nick and I are trying to save as much PTO and Sick days as we possibly can for Malia's surgery and recovery time.

Here's to hoping we get some good activity tonight or tomorrow so we can keep this party moving! Our family and friends have been the most incredible during this whole ordeal and honestly, we couldn't have done this without them.