- Written by Sandi Wood (Parker’s mom)
Parker was born in Davis County, Utah on December 4th, 2004. After a completely normal pregnancy and delivery, we had no idea that Parker was not a completely normal little boy.
As an infant, Parker did not eat well and therefore, he had a hard time gaining weight. In addition, he had severe reflux and often threw up what he did manage to eat. He was diagnosed with Failure to Thrive, and after 10 months of weight checks at the Pediatrician, visits to the Nutrition Clinic at Primary Children’s Medical Center, and power packing his food with calories, we decided to place a feeding tube.
Besides our nutritional concerns, we realized quickly that Parker had physical and cognitive delays as well. He had very low muscle tone and wasn’t meeting his developmental milestones. He didn’t bear weight on his legs, had poor trunk support, and had a hard time holding up his head. He began receiving therapies at home to strengthen his muscles and help motivate him to initiate movement.
Parker was a quiet baby, rarely cried, and seldom voiced much of an opinion about anything. As a young mother, I thought I was so lucky to have such a “good baby”. It didn’t take long to realize that there was more to Parker then we realized. His eyes didn’t track, he didn’t smile or laugh like other babies his age, and it was difficult to engage him in play. We began making the rounds to pediatric specialists – Ophthalmology, Neurology, Gastroenterology, Orthopedics, Physiatry, Genetics, ENT, and Pulmonology. Test after test was negative. On paper, Parker appeared “normal”. This was a very frustrating and emotional time for our family as we tried to find answers.
Eventually, Parker was given the ‘default’ diagnosis of Cerebral Palsy which refers to his physical impairments but does not address the cognitive concerns. No one could give his overall condition a name, or any idea of what expectations we should have for Parker’s life.
We now know that as a result of his poor muscle control, he has obstructive sleep apnea, strabismus of the eyes, and poor gastric motility. Today, Parker receives 95% of his nutrition through a feeding tube, although he does love to eat pudding! He wears oxygen when he is drowsy or sleeping. He requires suctioning and medication to control secretions that he can’t manage on his own. He gets Physical Therapy to prevent his muscles from tightening. To combat his increasing spasticity, he takes medication several times a day and gets Botox injections every three months in his large muscle groups.
Despite his challenges, Parker is a very busy little 7 year-old! He attends 1st grade at Iron Springs Elementary School in Cedar City, Utah. He continues to see a variety of pediatric specialists in Salt Lake City, Riverton, and St. George. He has two adoring sisters and a curious little brother, who all love to snuggle in Parker’s bed! Parker is known for his sly smile, his contagious giggle, and his “piggy noises”. He rides in a candy apple red wheelchair. His hearing is excellent, and he loves music and moving to music. He likes to “swim” and play in the water. He cannot speak, but he can laugh with joy, yell for attention, scream with discomfort and yawn with boredom. We know that he recognizes the people he loves and we often wonder what is going on inside his little head.
Parker is our ‘Angel Boy’. He tolerates everything that we have to put him through and is so patient when we struggle to figure out what he needs. As a family, we have gotten past our need for a diagnosis, we recognize that there is no cure, and we love Parker for what he is and the peace that he brings into our home. We live each day to the fullest with the desire to help Parker be as functional and comfortable as possible in this life.