Meet Pamela S., Parent Mentor at Akron Children's
Pamela's Story
Our youngest daughter, Katherine, was born struggling to breathe, eat or even move. She spent several weeks in NICU where doctors diagnosed her with arthrogryposis, a muscle disorder that causes muscle weakness and contractures. Repeated bouts with pneumonia over the following months (despite a g-tube & Nissan) eventually led to a trach and vent. For the next 5 years, we were responsible to provide around the clock nursing care for our ventilator-dependent daughter. Our "normal" world seemed to fade as we entered a new realm of nursing care, medical equipment, respiratory, speech, PT and OT therapies, insurance battles, and frequent ER runs and PICU stays. Akron Children's became our lifeline.
Those early years were some of the most agonizing & heart-wrenching, yet they also brought with them a wealth of unexpected blessings. While we are thankful those very difficult times are behind us, we will always be grateful for their lessons in faith, love and life that will leave us forever changed. Katherine outgrew her trach/vent, learned to eat, talk, and worked hard to keep pace with her peers in mainstreamed classes. She was very social in school with Key Club, Young Life Capernaum, FCA, adapted skiing, youth group, Sparkles cheer squad & Dancing Wheels. She has had many challenges through the years, including a cleft palate, tracheolaryngolmalacia, reflux, seizures, dysphagia, ADHD, dislocated hips and scoliosis, a med-port, g-tube, trach, vent & about 15 surgeries, yet she emerged a very loving, vivacious woman. While Katherine can get around in her walker, she primarily uses a power wheelchair to save her strength for living life large!
Thanks to Katherine & our experiences at Akron Children's, my heart has been forever changed. As I offer thanks for all God has brought us through, my thoughts turn to other parents who unexpectedly find themselves in a whole new world. As a fellow struggler, I want to offer support & encouragement as one who has who has been there
Pamela is a parent mentor for these conditions: ADHD, Arthrogryposis, Cleft Lip and Palate, Developmental Delays, Esophageal Reflux, Hip Dysplasia, Respiratory Distress Syndrome, Scoliosis, Seizures, Swallowing Disorders, Tracheotomy.
Pamela is a mentor for these care services: Developmental Delay, Ear Nose Throat (ENT), Eye, Feeding and Nutrition, Gastroenterology, Genetic Syndromes, Neurology, NICU, Orthopedics, Plastic and Reconstructive Surgery, Pulmonary, Trach / Ventilator
