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”
Tag Archives: our story
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”
A Comedy of Errors: Hospital style
I can’t even recap the whole day but I can tell you about the last 3 hours with a delirious smile, because all we can do at this point is laugh. Bryan’s brother was super kind and satisfied our need to eat something healthy with a big salad and some fruit. But, we got interruptedContinue reading “A Comedy of Errors: Hospital style”
Geek out part 2: more medical gadgets
The purpose of the EMU is monitoring seizures around the clock with both video and EEG. It is a little hard to do when you also are sent to ICU. But thanks to these nifty wifi remote networked cameras on wheels from Sony, Reese still has full EMU coverage two floors down. I even watchedContinue reading “Geek out part 2: more medical gadgets”
Reesey-kins and I chillin in the sleeping ICU. We both napped earlier so as usual, the night owls are going strong and poor Daddy is zonked. We are on hour 48 in hospital and we probably have another 48 to go. And I can tell you it feels like a week already. Because she hadContinue reading
My sweet boy
I was singing to Reese in her room tonight as part of our bedtime routine. I haven’t sang to Davis in a long time. But when he was little he loved it. So tonight when he came in to say goodnight to Reese and he asked why I was singing, I was surprised when heContinue reading “My sweet boy”
OK With Change 