It’s been a minute, tell me how you’re healin’
‘Cause I’m about to get into my feelings Time for a long overdue update! I thought about writing many times but I’ll be honest, it doesn’t feel great to sit down and try to figure out...
Well, we’ll float on, good news is on the way
We heard back from the team at Texas and have some plans going forward. One very important takeaway is that Max’s seizures haven’t moved to his right side. Everything is staying on his left side. Matt...
I remember mama said, “you can’t hurry love”
No, you’ll just have to wait She said, “love don’t come easy It’s a game of give and take” Waiting is what we’ve been doing and a lot of it. We made it back home from...
“You’ll never do a whole lot unless you’re brave enough to try.”-Dolly Parton
Our time at Texas Children’s Hospital has definitely not been boring. Max’s seizures more than showed up to the party: they were the party. Like I wrote in my last update, it’s a very strange place...
These are the days it never rains but it pours
Since the last update, we’ve had a lot of ups and downs. I wouldn’t necessarily say UP ups, but middling ups. We were able to get Max stable and back to his baseline. We ended up...
Here come bad news talking this and that
Bad news is putting it lightly. Epilepsy has been kicking our butts this week. We stayed at Lurie’s Wednesday into Thursday because Max was continuing to have cluster seizures that were necessitating his rescue medication. Thursday...
It’s one step forward and three steps back
So it’s been about 4 months since I last updated. Some of the absence was due in part to needing to recharge from the longest and most challenging school year I’ve had in 15 years of...
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 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...
Ablaze
I don’t know where to begin. There’s a lot of waiting but right now even that’s important. On Monday morning we checked in and Max had a marathon of procedures done. First was a surgery to...