Ablaze

I don’t know where to begin. There’s a lot of waiting but right now even that’s important. On Monday morning we checked in and Max had a marathon of procedures done. First was a surgery to place bone anchors in his skull. That was followed by a CT to ensure they were placed exactly where the team wanted them. Following that CT, was the actual SEEG surgery to place Max’s electrodes into the anchors. The electrodes go to the spots that have been very precisely identified as areas to be mapped. Following the placement of the electrodes was another CT to ensure they were located in their proper spots. Precision is key in all of this. Then about 6 hours later, we were reunited with our best dude in recovery.  He’s now rocking a cute little cotton top that covers 7 electrodes that house 80 sensors that work like an internal EEG. they’re going to monitor all his brain activity and gather the most important information for the team here.  He is tired and has been through a lot already but is incredibly brave and strong and ready to take this one. 

Tuesday we started mapping/ deep brain stimulation. The neurologists, epileptologists, tech, and nurse focus on one electrode at a time. Each electrode has multiple sensors in it and picks up on all brain activity. Each electrode can also be used to send electrica; impulses out. They have Max perform tasks like reading to us and send electrical stimulation to a very specific part of his brain. They watch him and all his monitors and also rely on his feedback to see if there is any sort of reaction or if the electrical impulse impacts whatever task he is doing. It is very systematic and I am giving a very light version of something that is insanely important and strategic to our plan. They work through increasing the strength of the pulse to see if that has any sort of effects. The reason this is so incredibly important is that they are stimming areas around Max’s tuber that we think are problematic and are causing the most of his seizure activity. Ideally we’d like to use a laser and burn these areas. If they can zap an area on a higher level of the stim and it has zero effects on Max’s tests/ tasks/ critical areas of the brain like language/ motor etc then it tells them this area could be potentially lasered. 

After we are done mapping, we’ll decrease his meds and wait for big seizures. They map those carefully and compare the trajectory the seizures follow with the burnable area where the seizures fire and see if laser ablation is a viable option for us.

We have been waiting a long time to get here and feel very confident in our team. Max is a rockstar. It’s amazing to me to be here with him building Legos while he has electrodes wired into his brain collecting life changing information. Science is incredible and so is this kiddo. As always, I am humbled by his strength, courage, and positive attitude. He has been charming an entire team of brilliant medical professionals by reading to them about bioluminescence, making them laugh with bad dad jokes, grossing his nurses out with pictures of hagfish and meeting other Harry Potter fans who work here. We’re tired, but we’re ready. 

“To my boy, my precious, gentle warrior

To your sweetness and your strength in exploring

May this bond stay with you through all your days

My mission is to keep the light in your eyes ablaze” -Alanis Morisette