Here comes the sun, and I say It’s alright
Little darlin’, the smile’s returning to their faces Little darlin’, it seems like years since it’s been here So, it’s been 6 months since I last updated the blog. I have thought about it so many...
Tonight is the night, we’ll fight ’til it’s over
So we put our hands up like the ceiling can’t hold us Yesterday was the start of the main purpose of our Texas trip and hopefully bigger and better for our best dude. Max had...
Ain’t no stoppin’ us now
We’re on the move We made it to Texas safely on Tuesday. We brought along Frankie and my mom for a few days to squeeze in some fun and a little family downtime between pre surgical...
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...
“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...
If you are ever in trouble, I’ll be there on the double
We are still at the hospital. Max is MUCH more lucid than he was during the week. They had to use some pretty big heavy hitters to get things to calm down. Max was sedated and...
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...
And I Won’t Back Down
We left off still at the hospital, with clustering seizures. That continued for an additional week. Max wasn’t really improving at all. The doctor acting in the place of our epileptologist (she was out of town...
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...