And what a day we’ve had! This morning I got up from a pretty good night sleep to a splitting headache. To which I realized I have no room to complain compared to my daughter’s pain. Within 5 minutes of me standing up, I was watching them redress her bandages for the first time andContinue reading “Second night after surgery”
Category Archives: Parent Advocacy
Purple ribbons for Epilepsy
Lost in the little things
We don’t talk much about Reese’s development. In many ways it’s her biggest problem from all that we deal with every day. Of course she doesn’t know it, well most of the time. Sometimes she looks at me and is so intently talking to me with her eyes, I feel like she must be frustratedContinue reading “Lost in the little things”
View from my bed. That’s right. We are home, she’s back in our room, and she is snoring. #familylove #epilepsywarrior #dragonmom
Why I love 3D now, the trip update
We know everyone is on the edge of their seats waiting for the big update. We don’t label this as good news exactly, but we do feel we have new insight thanks to some creative investigating by the specialist at Lurie Children’s. Seems we may have found physical proof of the culprit causing Reese’s seizures.Continue reading “Why I love 3D now, the trip update”
Patience
It’s never been easy for me, that highly coveted virtue — Patience. And it’s particularly hard these days when we feel like we have so much hinging on Reese’s prognosis. A mercurial conversation pending new test results, doctor consultations and her daily progress report. It has been flabbergastingly complex how the inter-workings of her system,Continue reading “Patience”
OK With Change 