Help Me Feel like a Rockstar!

And Just a Bit More About Me

Cassian was born with congenital heart disease, congestive heart failure and complex heart defects that were repaired with open heart surgery at 6 days old. Unfortunately he had some major complications following his heart surgery. Cassian spent a total of almost 4 months with a breathing tube and on ventilator support. When he was almost 3 months old Cassian started having seizures. We discovered he had hydrocephalus and he was also diagnosed with epilepsy. He ended up having brain surgery to place a VP shunt and started on medications to control his seizures. He was also diagnosed with pulmonary hypertension, diastolic dysfunction and feeding/motility issues. He ended up having several other surgeries and procedures, including a gtube placement and attempted tracheostomy. He was later able to come off ventilator support and come home at a little over 5 months old. After his initial discharge, Cassian has been admitted many, many times due to ongoing chronic health conditions. He’s had several medical procedures, EEGs, EKGs, numerous other testing and undergone surgeries frequently. Cassian also has hypotonia, is developmentally delayed, and was born with vision problems that required bilateral eye surgeries. When he was 1, we discovered through genetic testing that he has a rare genetic syndrome, called Kabuki Syndrome, that is associated with his health conditions and defects. Despite everything he’s been through and continues to go through, Cassian is a happy and energetic baby with a personality and smile that melts our hearts. He is constantly overcoming obstacles and brings more joy to our lives than we ever though possible.