But you’ll fight and you’ll make it through
Here comes a long overdue update. I’ve sat down to update this countless times and written and rewritten this in my head so many times but I haven’t been able to make myself do it. Some...
“The best way out is always through.”-Robert Frost
To say this week was the worst wouldn’t begin to do it justice. Not even calling it Frankie’s adjective of choice: “the worstest” would cover it. Sunday night going into Monday Max didn’t sleep great. This...
Guess Who’s back? Back again?
If you said seizures, you would be correct. This is how things are supposed to go post surgery. The RNS is strictly monitoring right now. Despite the fact that we knew that they would return, this...
Thank you for being a friend
We’re back to the waiting game, productive waiting which definitely feels better than where we’ve been before. Max’s RNS is doing it’s thing collecting data and we’re doing our thing uploading it. We’ll have our first...
Domo arigato, Mr. Roboto, domo, domo
So we’re home and settling back into a routine. Max is doing great and SO happy to be home. You would never know he had two major brain surgeries within the last 11 days. So what...
And there’s a joy, a joy in all I can see
A joy, in every possibility Sorry for the lack of updates, it’s been a whirlwind. Max was able to come home Tuesday! His Neurosurgeon is a huge proponent of “kids heal best at home”. Matt and...
Don’t stop me now, cause I’m having a good time
Max had his RNS surgery yesterday. It was a long day and if I haven’t said it enough, let me say it again, he is AMAZING! He came through two brain surgeries in one week and...
‘Cause I’ve still got a lot of fight left in me
Tomorrow is the big day. All the data collection between mapping and this point was depending on Max’s brain. The team was able to see and record enough of his big seizures to get the final...
The waiting is the hardest part
When we last saw our hero, he was getting his brain mapped. You might be asking yourself what that is? You might be asking yourself why is that important? And you may ask yourself, “Well… how...
Dynamite comes in small packages
I would be remiss to not mention the smallest member of our crew. Though she’s little, she’s fierce. Frankie came into this world on her own terms and has been calling the shots ever since. We...