Cyrus’ story is a long one even though he’s not even 3 years old yet. Cyrus’ birth mom was told that her unborn son would not survive birth because his hydrocephalus was so severe. Cyrus was also diagnosed prenatally with a condition called Dandy Walker syndrome which is a malformation of the brain with the growth of a large cyst at the base of his brain. His cyst was so large that it was causing the severe hydrocephalus.
Cyrus was born full term at 9lbs and was immediately rushed to surgery for the neurosurgeon to place a life saving shunt in his brain to treat his hydrocephalus. Cyrus survived birth! He survived having brain surgery the day he was born!
Cyrus ended up with multiple complications with his first shunt and had to have 4 shunt surgeries in his first 3 months of life.
Cyrus’ birth mom decided that she was not able to care for him so she chose adoption. I was matched with Cyrus when he was 4 months old, he was still in the NICU and faced at least 2 more surgeries when I was chosen as his forever mama.
I was able to fly from California to Indianapolis to meet my son soon after he had undergone his 6th brain surgery to remove the large cyst from his brain and remove part of his C1 vertebrae.
A month after I was chosen to be Cyrus’ mom and after he had been in the NICU for 158 days, Cyrus was released from the NICU and we jumped on an airplane to fly home to California.
At the time of discharge Cyrus was on a continuous gtube feed, had to have his oxygen monitored with supplemental oxygen as needed, was on medication for his reflux, breathing issues and anti seizure medication, he also had to be transported in a special flat car seat for his cervical spine instability.
It’s been over 2 years since Cyrus came home. He has endured one additional brain surgery (ETV) at 9 months old, he’s been 99% gtube fed but just recently cleared to start oral feeding, he’s had to undergo a urology surgery, he’s been diagnosed with an extremely rare genetic disorder (not able to find documentation of another case with his exact chromosome abnormalities), has experience an emergency sedated intubation when his seizures became uncontrollable, and has been diagnosed with Cerebral Palsy.
Despite the difficulties Cyrus has experienced in his short life he’s the sweetest little boy ever! He’s adored by everyone who meets him because he gives off the most loving vibes. Cyrus works incredibly hard at his many therapy appointments each week. He’s starting to say words, starting to pull to stand and cruising along furniture, starting to explore oral feeding and he crawls everywhere.
Having adopted Cyrus through a private adoption was a huge financial expense and his continued care has been an adjustment for me and my family. Cyrus has needed and will continue to need a modified home environment/furniture such as a gtube pump accommodating sleeping arrangement, easily accessible toys and modified clothing and shoes to accommodate his frequent gtube feeds (every 2 hours) and specialize AFO braces.
The immediate need we have is to modify our home’s front entrance to accommodate Cyrus’ walker/gait-trainer and soon-to-be daily use of a modified stroller/wheelchair for safe transportation.
Cyrus has been a blessing beyond words! We are so privileged to have him as part of our family despite the daily time consuming gtube feeds and medication schedule along with the minimum of 4 therapy appointments each week and multitude of medical specialists involved in his care.