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...
The Stars at Night are Big & Bright
We made it to Texas for our 2nd opinion finally! It has definitely been a long time in coming. Not a great time either. We’ve narrowly avoided emergency admissions and tried to stay stable enough to...
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...