We waited 7.5 hours today to find out how our baby handled brain surgery. They called to give us an update every hour or so, but that’s still an insane amount of time to wait. Good news is she is such a fighter, they say it was a “beautiful” surgery and we have survived partContinue reading “Peace at the end of a long day”
Tag Archives: epilepsy
Ready
It’s all in the lines. Skips, jumps, hills and mountains. Nothing. Everything. Waves, even and steady. Your breathing, not your brain. And my heart it falls. My lungs lose air. Frozen. Terrified. Ready. Ready??? There is no such thing. I fail you. I’m not strong enough. Crashing, reeling. My emotions, not the waves, not you.Continue reading “Ready”
Doing Epilepsy Month in style
We think about epilepsy every day. And yet, it’s good to still have a month to think about it, as a message, rather than as a disease, life-threatening illness, never-ending challenge, burden….. I could keep going. Here we are 16 months into our journey, and I am trying to be committed to doing more forContinue reading “Doing Epilepsy Month in style”
Reese and her hands
Reese doing the little things
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”
OK With Change 