My husband Isaak and I welcomed our precious little boy, Weylon, into the world on 11/3/19 after an emergency C-section. When he was born, his umbilical cord was wrapped around his neck twice and he was not breathing. After some breathing assistance and time, he took his first breath. It soon became apparent that he was very sick and was transported to Akron Children’s NICU a few hours after his birth. During transport, he suffered a seizure that was difficult to control and had an allergic reaction to a seizure medication that led to us receiving a phone call that informed us he may not make it through the first day of his life. After a few days of being on life support, his seizures were controlled and he was stable enough to get an MRI done that revealed he had suffered severe brain damage from a lack of oxygen to his brain. Thankfully, he has been a fighter since that first day of his life and after a bumpy month-long NICU stay we were discharged with palliative care and able to take our sweet boy home. We were connected to early intervention services once we were home. He received a diagnosis of spastic quadriplegic cerebral palsy at about 5 months of age. We learned as a result of his brain damage he also has a vision impairment known as CVI or cortical visual impairment. Weylon struggled with feeding at a few months of age and has since been feeding tube fed through his G tube. He receives occupational, physical, aquatic, speech, feeding and vision therapies. We also see other specialists, including neurology, physiatry, gastroenterology, and ophthalmology.
A little about our family. I, Cheyenne, left my job as an interior decorator when Weylon was born to become a stay-at-home mom and full-time caregiver to him. My husband, Isaak, works at Smucker’s in the coffee division. Weylon loves being outside, jazz music, light up toys, snuggles and movement. As a family, we enjoy listening to music, going to church, going on walks, traveling and pretty much anything outdoors. Weylon will be a big brother here in a few months as well! One of the best things we have done is connecting with other parents who have been on a similar journey as us and I hope to provide that comfort and community to others traveling down this road.
Cheyenne is a parent mentor for these conditions: Cerebral Palsy, Cortical vision impairment, Feeding Disorders, Hypoxic-Encephalopathy, Spastic Quadriplegia.
Cheyenne is a mentor for these care services: Cerebral Palsy, Developmental Delay, Eye, Feeding and Nutrition, Gastroenterology, Neurology, NICU, Palliative Care, Rehab, Seizures, Trach / Ventilator
