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”

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”

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”