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 chatty, building some Legos, reading, and befriending anybody who comes into his room.

 On Monday They had us hold food in case they were able to squeeze us in and get some more electrodes put in. The plan was to put some more electrodes into Max’s frontal lobe. This would allow the team to see if his frontal lobe is a starting point for his seizures or allow them to eliminate as being involved when his seizure generalizes so that they could get a better idea for mapping purposes.  They weren’t able to fit us in. Dr. Curry came to see us that evening and let us know we wouldn’t be able to get into the OR that day because of how booked it was. He updated us on the plan to try the next day and also poked his head out in the hallway and told them to feed this dude.

Tuesday bright and early was a go. We were able to get in as the first surgery. Max was nervous but very brave. He was charming the anesthesiologist with some puns and dad jokes on his way back to the OR.  This was a much shorter surgery than our initial implantation and didn’t require as much sedation. Luckily recovery has been much better too.  No nausea or “hurling” as Max has been calling it. 

Since then seizures have been pretty quiet. This is a more typical response to SEEG implantation. It was definitely unusual for us to have so many seizures after our first round , but helpful as far as data goes. We check in with the team a few times a day. We are incredibly impressed with the level of thoroughness and how much communication we get from all the members of the team. I know I keep saying it, but we are definitely in the right place.  

Today The team engaged in some brain mapping and stimming with Max. In order to explain what brain mapping is and why it’s so important, we compare it to a minefield for Max. You wouldn’t go running  wildly through a minefield. However, if you had a map of where the mines were, you would know where it was safe to run and what areas to avoid. Max’s brain is similar in that there are areas that are responsible for critical functions like moving, talking, listening, etc.  Everyone may have these functions located in slightly different parts of the brain. If you are someone like Max who has TSC and has  tumors that change your brain anatomy , then those parts may form in very different locations.  The mapping helps the doctors pinpoint where Max’s specific language area is. This is particularly important because of where it seems his seizures are mostly firing. They also use stimulation in the mapping process. They apply small amounts of current to specific areas one at a time. Then Max performed various tasks. They watched his response time to see if any of his functions were impaired from stimulation. The stimulation is gradually increased in each electrode systematically. Max would have to follow simple commands when I said them like shrug, show two fingers. Then they had him read. They also had him do some basic math. They closely watch and see if there is any change in him with any of the levels of stimulation.  If stimulation caused Max to stop speaking, impaired his speech to the point that he couldn’t be understood, or affected it in another way then they would know that the area was critical to his language. Brain mapping was tiring for him but he did a great job. He also had another visit with Pinto Beans to break it up a little bit which definitely helped. Pinto is coming back next week to see Max and maybe even nap on his bed, which Max is VERY excited about. The team is compiling their information and coming up with a comprehensive picture of Max’s brain function and where his seizures are firing from.

They would like to see some of his bigger seizures which seem to be on hiatus right now. They have started lowering one of his medications this evening and will continue that tomorrow to see if that causes the seizures to return to the party.  It always feels weird to be hoping for seizures, but here we are! We have a great team working on this and are very hopeful they will come up with the best plan for our best dude.

Max has been very cheered up by getting notes and drawings from people wishing him well and telling him how brave he is. We’ve been decorating his room with the notes and it has brightened him and the room up!