Carter came into the world in January of 2014. We did not know him then. The doctors knew that something was wrong right away. Among other things, Carter was born with no suck reflex, no gag reflex, and failure to thrive. He was immediately transferred to Children’s Minneapolis where he was to remain for the first 6 months of his life.
During his time at Children’s, his medical team found out more about Carter’s challenges. He had microcephaly (small head/brain), hypertonicity (his muscles are always super tight), developmental delay, bilateral hip dysplasia, high blood pressure, low oxygen levels, questionable vision abilities. His first surgery was to insert a G/J tube in his belly; he is fed via tube directly into his intestines, and medicine is injected via tube into his stomach. He underwent two surgeries to try to repair his hips, neither of which were able to set them. His hip sockets and ball joints are malformed, and the balls don’t fit.
Carter came to us in July 2014 through the Minnesota Foster Care program. We had recently received our foster care licensure and our aim was to assist medically fragile children; my husband is an LPN and had worked in home care with medically fragile children for several years. It was our calling to help. At the time Carter came to us, he still had all of the above challenges. He was on an oxygen tank to help him breathe, medicine for his high blood pressure, medicine for acid reflux, and required skilled nursing care for 16 hours a day.
Over time, Carter grew stronger. He stopped needing oxygen on a daily basis, although we have it on hand for when he needs it. He stopped needing blood pressure medicine. He started physical therapy, speech therapy, and occupational therapy. We also found more about what would be life-lasting as Carter grew stronger. He has cortical visual impairment, which means that his brain and his eyes don’t always work together. He communicates via grunts and coos, as a baby does, and will most likely never speak. His orthopedic specialist has determined that additional surgeries on his hips will serve fruitless, as the hypertonicity in his muscles will pull the joints out of socket anyway. He will most likely never walk. Additionally, he has developed a curvature in his spine that requires him to wear a brace most of the day.
Carter became “forever ours” on February 29, 2016, Leap Day; a special day to adopt a special boy. Since his adoption was complete, he has continued to thrive. He now goes to special ed preschool, continues his therapies, and is starting to communicate using switches to say yes/no, select choices, etc. He has been invited to a special genetics program at Children’s to research the underlying reason for his conditions, as right now all they can say is that he has an “undiagnosed neuromuscular disorder, most closely resembling Cerebral Palsy”.
Carter will always be confined to a wheelchair. At present, he is transported in a car seat in our van, and his wheelchair stored in the back. His back brace must be removed in order to fit in the car seat, which makes long driving trips undesirable for the health of his spine. He is 100% dead weight when picking him up, and before you know it he will be too big to pick up and carry without lift assistance. Our current van is not a model that is capable of being converted for a wheelchair lift, so we need to either get a new van and have it converted, or get a van that has already been converted with lift. Carter is on a CADI waiver which will pay for the conversion portion, but not for the value of the van itself. Our family would greatly appreciate any help to acquire a van for our little Carter.
- Patricia O'Neill
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- Patricia O'Neill
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- Patricia Oneill
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