Hospital – OK With Change

Progress every day

It feels like as good a time as any to put it out there. Things are pretty good these days. I still hold my breath every time she bends over or stares into space, but our little warrior defies the inevitable. And it is most likely going to happen again, so we will try notContinue reading “Progress every day “

Parents as Partners: my new motto

via Instagram http://ift.tt/YiZIHK Last night was a new kind of good feeling. Came home energized from good conversation & new faces. Realized what a big deal it is that a staff member nominated ME for our hospital’s main Family Advisory Committee. There is so much good to be done and with a new circle ofContinue reading “Parents as Partners: my new motto”

Our Warrior Gets A Medal

Showing off her medal. Big D wanted her to have it because she deserves it more than he does. #hisidea #sweetboy #epilepsywarrior #brainsurgery Had to come add to this. This boy of mine knows what melts my heart. He received this medal for reaching a reading milestone at school. (Many children got it). But heContinue reading “Our Warrior Gets A Medal”

(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 wantContinue reading

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 herContinue reading

The diagnosis: What’s next

Lots of info on the different potential diagnosis we are working toward. But right now she doesn’t cleanly meet the symptoms of any. So they are all theories right now, that’s all. And now what you know, is what we know. And that isn’t much. Currently treating and testing for… Auto-immune via steroids, until weContinue reading “The diagnosis: What’s next”