Our Little Superhero: Kayson Morin

Life can always throw curve balls however I do believe we chose our own destiny. We found out our little boy had Spina Bifida the same day we found out we were having a little boy. We live in Arizona but we flew out to Philadelphia to give birth to Kayson mainly because the doctors were phenomenal but also because we were hoping to get into a trial for Spina Bifida. The trail would have allowed Kayson to have his meningocele closure in utero instead of postnatal. Kayson did get into the trial however he got into the post natal group. The day after he was born he went in for his first surgery for his back closure. He did amazing! He healed fast and we went home sooner than anyone had thought we would. A week and a half after he was born we flew from Philadelphia back home to Arizona. For awhile it seemed like we were beating the odds. He had not developed hydrocephalus in utero nor after his surgery. He was four months old when I first started to notice something was changing in his personality, he was a lot fussier than normal, and he was a fussy baby! In one blink of an eye and one CT scan life really changed. Kayson was having seizures and had developed hydrocephalus. This came out of nowhere because his last MRI scan was just the week before and things were just fine. From that moment everything we thought we knew had changed again. We were once again thrown a curve ball. It was then I realized how important it is to advocate for him and be educated on everything going on in his life. Maybe he doesn't have true super powers but he is my super hero because there have been so many times I wonder how he does what he does, how is he going to get through this, how am I going to get through this? But he does and his smile gets me through it every time!