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 did I get here?”

Letting the days go by, let the water hold me down

Letting the days go by, water flowing underground

Ok, Talking Heads interlude over.

Brain mapping and how I explained it to Max:

Brains are complex and amazing. Everyone’s brain has similar structures but is built a bit differently, kind of like a snowflake. There are parts of your brain that are there and incredibly important and there are parts of your brain that are kind of like space filler in your skull like a seat filler at the Oscars. I compared the brain to a minefield for Max. You wouldn’t go running through a minefield all willy nilly. But, if I gave you a map of where the mines were hidden, you would know where it was safe to go, or not go. Mapping and the deep brain stimulation helps make the map. It tells us the parts of Max’s brain that could safely be lasered if needed or the parts that are critical (either to function or to making him the AMAZING human he is) that better not be touched. The mapping is a critical part of the process. It shows where things like motor skills, language reception, and nerve response are housed.

So, We’ve finished mapping for now. Max was a rockstar! It was tedious and tiring for him because it was on the coattails of a 6 hour brain surgery but he made it through. So now we wait. We’re waiting for his big seizures to show up to the party. A lot of this is a balancing act. We needed his seizures to be as controlled as we could get them for him to get mapped successfully. Now we’re wanting to see big seizures. The very same seizures that have been circling us like sharks for two years and that we’ve been trying to do anything to avoid. It’s a very strange place to be in mentally. “It’s super weird”-Max Jenner. We need to see at least 3-4 of those to see their trajectory.  So that’s where we’re at now, waiting for those guys to show up. Once we have that data, the team will analyze everything and we’ll have a plan for our next steps. To those who are wondering how long this data collection may take, we don’t know. That’s up to Max’s brain. Also, they can have as much data as they need to before going in to laser because you can’t unlaser. Max has been struggling with morale and getting impatient to go home. He misses Frankie. The way I explained it to him is if the team wants to take a year to gather data to touch that beautiful brain, they can. I want them to do this right. I reminded him of that minefield. He asked me if I would blow up if they touched the wrong part of his brain. I told him yes, and to think along the lines of the Hulk, but much worse. All kidding aside, we have an AMAZING team in place and Matt and I have EVERY confidence in their decision making and where we are and where we are headed.