More than 16 years ago, 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. Today, Katherine is a student at Medina High School where she works hard to keep pace with her peers in mainstreamed classes. Katherine stays busy with Key Club, Young Life Capernaum, FCA, adapted skiing, youth group, Sparkles cheer squad and 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 and about 15 surgeries. Yet she has emerged a very loving, vivacious young woman. And 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 and all 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 the support and encouragement of one who has "been there." Indeed, one of those unexpected blessings had been the privilege of sharing another’s burden and being able to offer hope in the midst of the storm.
Pamela is a parent mentor for these conditions: ADHD, Arthrogryposis, Cleft Lip and Palate, Esophageal Reflux, Hip Dysplasia, Respiratory Distress Syndrome, Scoliosis, Seizures, Swallowing Disorders.
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
