Thank you for being a friend

We’re back to the waiting game, productive waiting which definitely feels better than where we’ve been before. Max’s RNS is doing it’s thing collecting data and we’re doing our thing uploading it. We’ll have our first appointment soon to talk about adjustments and when we can start working on programming it to recognize and hopefully interrupt  and stop his seizures.

 In the meantime, Max was able to attend a half day of school on Monday. He was SO excited to be back and has already started trying to negotiate for full days. He’s still coming off of two major brain surgeries and the team wants us to ease into things. I do love his enthusiasm  and how much he wants to be back. 

Throughout all of this we have been humbled and touched by all the support we’ve received from so many people . Holy Family School has been a  tremendous help. Max’s teacher has helped us throughout all of this by making his work accessible via Google Classroom so he can stay on track with the class. She also has set up ZOOMs throughout  the time he was home so he could connect with the class which made his time at home much less lonely. She, the assistant teacher, and his classmates came up with the idea and worked with the Principal to set up a Purple Day and raised money for the Epilepsy Foundation in support of Max. It was amazing to see so much purple in honor of our warrior. His first grade teacher reached out and FaceTimed him while he was in the hospital. He also received some incredibly thoughtful cards and gifts from the teachers and kiddos. All of that on top of having the support and prayers of the school community has meant so much to us. Max was so touched that people were thinking of him and praying for him. When I told him about the Purple Day, he said they’re doing that all for me?! That’s so nice! 

Another part of the amazing support we’ve received would be from the incredible nurses during our stay at Lurie’s. We honestly have not had a single bad experience there but we were there for a couple weeks so we were able to hang out with some of the same nurses for a few of their shifts which was fun for Max and me. We’re chatterboxes and people collectors. That is to say, we always find people who have interesting stories to tell. Max tends to charm everybody during his stays because he has such a sunny disposition. This was no different, he was telling the nurses all about weird and cool sea creatures. One of the nurses made him his own deep sea aquarium featuring some of the creatures he was talking about and brought him an adorable stuffed clownfish. We also now follow a bunny on instagram belonging to one the nurses. 

We were also kept fed and caffeinated throughout  our two weeks at Luries by very thoughtful  family and friends. I am going to be honest, I had never used Door Dash before but it was such a treat to be able to order some non hospital food for Max. Max discovered some delicious favorites around the hospital and I wore a path to the Starbucks in Northwestern when I needed to stretch my legs and recaffeinate. The food and caffeine were beyond appreciated.

Thank you doesn’t even begin to cover the gratitude we feel for all the support we have received and continue to receive. We are incredibly lucky to have such a great support system and it’s been humbling to see how many people Max has affected. We think he’s incredible and thank you for being in this with us for him.