Hi everyone! Just a quick update to let you know Andy and I are grateful to back home with Giovanni. Andy has been doing well with new meds and lots of rest & recovery time.
This last trip to the ER was really hard on all of us - the 48 hours before his admission were eerily similar to what happened in December with that giant, uncontrollable seizure that resulted in coma. This time, his seizure was also difficult to control, and it was terrifying for me to watch helplessly for so many long hours, especially after all he has gone through in the past few months. What a blessing the doctors were finally able to get him out of the danger zone and stabilized when they did, but it has been challenging for me to process and understand that what happened a few months ago was not a one-time thing as I had hoped. The good thing about this recurrence is that it was caught in good time and his case is well known by the doctors at Childrens, which allowed for early intervention and a lot of testing and observation that continue to provide good information about his condition and will hopefully provide more insight into treatment options and prognosis.
The recent seizures and imaging made his diagnosis more aligned with FIRES, even though having both hemispheres of his brain and his spinal cord involved make it "atypical" FIRES. I am still processing the new information and working through what it all means for Andy, but as I mentioned before, I am trying to focus on accepting and embracing where we are in this forest (and that he is alive and we are all home together again!) rather than obsessing over every detail. It has been easiest and most productive to focus my energy and resources on the general condition he has (an acquired brain injury), what that means for him at home and at school, how it affects his cognitive skills, and helping him navigate social situations.
Here is some great news: Giovanni and a few of his teammates swam in the state finals this weekend! 🏊🏼👏🏼 His team placed 18th in the state in the 400 free relay and I am super proud of him! ☺️
Thank you all for continuing to support us through the ups and downs of this wild ride! We appreciate your patience, generosity, understanding and incredible kindness more than I have words to express.
Much love from the boys and me to you 🤗❤️