This year, I’ll live like I’ve never lived before
We’re back! Not just to update the blog, but also in Texas for a check in with Max’s team. I haven’t updated in a while on here. Here are the major takeaways: When Max was released,...
“Get up, stand up! Don’t give up the fight!”
Friday there was a cancellation so Max’s surgery was able to get bumped up a couple days. We were excited because this is the BIG thing we were hoping for. It probably sounds crazy to hope...
My my heart like a kick drum..my my love like a voice
We left off sending Max into surgery to get his grids placed. It was done more quickly than anticipated which was good. We did end up in recovery for 6 hours because our room wasn’t ready...
But I promise we’ll take the world to its feet and move mountains
Our best dude just headed headed back to surgery with Dr. Weiner to get his intracranial grids placed. Hands down, the strongest person I’ve ever met. We’ll get him back in about 8 hours. Here he...
I’m still a believer but I don’t know why I’ve never been a natural All I do is try, try, try
We spent some time trying to chase Max’s bigger seizures and they didn’t show up. I think I’ve mentioned about 5 billion times how strange it is to spend all of our time trying to...
There was a dream and one day I could see it
Like a bird in a cage I broke in and demanded that somebody free it Since the last update, Max has been perking up and more and more like himself which has been awesome. He’s been...
And I’ll rise up, I’ll rise like the day
I’ll rise unafraid I’ll rise up And I’ll do it a thousand times again And I’ll rise up High like the waves I’ll rise up In spite of the ache I’ll rise up And I’ll do...
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...
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...