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.