Rough evening. Had to restrain her finally after hours of Bryan and I standing by crib holding her arms down. She finds the bandage a huge issue and won’t stop digging until she rips it off. Oh and did I mention she is snoring? Poor baby.

(Written Wed night, but fell asleep before I could finish)

Don’t ask me how it’s possible. Our little warrior is blowing us away with her strength. Only 24 hrs after brain surgery and she is sitting up.

I know it’s hard to believe, but we aren’t actually hoping for recovery right now. Yes, we want her to be healthy and strong, but what we really want is for her to have seizures so the extra special grid laying on her brain right now will capture the precise location of her epicenter and allow them to remove all of the bad stuff without having to remove too much extra.

We learned today that this concept makes complete sense to Davis. He calls it “the dirt”. I wish I had been recording him as he explained there is dirt in Reese’s brain, and it’s a mess and so they are just cleaning it up. “It’s really dirty in there and they’re cleaning it out, mom.” 

Yes, my love, that is EXACTLY what they’re doing. If you need any more help understanding this extremely complex concept, I’m sure Davis will be happy to help. 🙂

If you’ve been to our house in the past 4 months you know she has been obsessed with this castle. Seems she is perky enough to give it a few min of playtime. #epilepsywarrior Maybe tomorrow we can play pirates since she only has the one eye right now.

Never got this posted yesterday. Luckily we still have today #purpleday.

Reese just had her dressings changed for the first time and they said she did surprisingly well. Better than some teenagers. To me she looks miserable. They don’t know that she isn’t a crier. They don’t realize that all of this stuff touching her head and wrapped on her hands is driving her nuts.

I can’t tell you how hard it is to not yell at people for touching her. It’s like when you have to countdown from 20 to not lose your temper at our kids… But so much worse. I can tell she is scared and she won’t let me touch her and it’s agonizing to feel so helpless.

Her face is starting to swell so you don’t want pictures now. I want everyone to have this beautiful face in their minds, and not be saddened by what we are seeing.

Thank you to all who are wearing purple! You’re wonderful! And when someone comments on that beautiful shirt please tell them it’s for epilepsy awareness.