Don’t stop me now, cause I’m having a good time

Max had his RNS surgery yesterday. It was a long day and if I haven’t said it enough, let me say it again, he is AMAZING! He came through two brain surgeries in one week and is still smiling and unequivocally Max. 

It was a tough day, he was anxious. Max is incredibly smart and throughout all of this it’s been very important to us that he have a place on the team. So much of his Epilepsy and TSC are things that have happened TO us and we haven’t had a say over them. Because of that, we have made sure to keep Max an informed and active member of his team throughout the last two years. He has impressed all of the doctors and medical professionals with his maturity, intelligence, and ability to adapt.  I am incredibly grateful that he is such a strong, smart, and brave kiddo because he is as invaluable on this journey as the Epileptologist. He is an incredible advocate for himself and I LOVE that he asks questions. It was pretty awesome to be able to hear him talk  to the Neurosurgeon and be able to tell her exactly what the plan was and ask clarifying questions for himself. He’s made quite the impression on a lot of people this week, whether it’s because he’s talking about his favorite bioluminescent animals with the nurses at night, cracking the team of neurologists up with corny jokes, quizzing everyone on what Hogwarts house they’d be in, or talking about the robot that would be helping perform his surgery. 

Surgery went great, and we were able to be reunited with our warrior at around 4:30 yesterday. He was FEISTY which was great to see. We did a quick CT to ensure that the RNS and leads look good. We were able to settle back into the room and get him comfortable and he was given the all clear to build Legos. Only Max would be ready to tackle Legos after 6+ hours of brain surgery. He continues to amaze us with his resilience and bravery. Everything is looking good so far. We have a lot of swelling and we were told that will worsen for the next few days  before it gets better. He’s rocking a pretty large incision where the RNS was placed and then some smaller ones from the two leads going to those two trouble areas, as well as ones from the SEEG leads. The surgeon did a beautiful job and he has a fantastic head of gorgeous red hair, so from that perspective we’re not concerned. It can be surprising to see so we talked about it first. Max was upset but I told him that those scars are beautiful to me. Scars show the hard things you’ve gone through. I told him that he’s a warrior and that when I look at them I see how brave and strong he is. I see how advanced science is and I think how incredibly grateful I am that we have reached a point that we can do  the things we can to reduce his seizure load. That his scars are beautiful to me because to me they represent hope, hope for less seizures and to me that is the most beautiful thing we could give him.