Beating the Odds
Four-year-old Allie Jones arrived home from school with a huge smile on her face. Her eyes sparkled as she drank from her favorite red cup, hugged her mom and said she was a “big girl” and a “beautiful princess.” Then she was off to her bedroom to retrieve her favorite Mickey Mouse toy. While this experience may be commonplace for many parents, for Amanda and John Jones, these everyday actions hold special meaning because Allie, who was born 13 weeks prematurely, was expected by doctors to be blind, deaf and never walk or talk.
Because Amanda’s older children, now 8-year-old Parker and 5-year-old Kaylei, were born four and six weeks early, doctors were closely monitoring Amanda’s pregnancy with Allie. In October 2009, Amanda drove from her home in Danville, Va. to her physician’s office in North Carolina for a routine, 27-week check-up. Although Amanda wasn’t having problems, her doctor convinced her to drive to a hospital in Greensboro for what was supposed to be a quick, routine monitoring. Instead, Amanda’s placenta tore from the uterine wall, causing her to lose seven units of blood, receive a blood transfusion and deliver Allie by emergency Caesarean section the following morning.
“When Allie was born, she weighed 2 pounds 2 ounces, but her vital signs were good,” Amanda recalled. Although Amanda and John weren’t permitted to hold Allie and had to limit touch, Amanda said Allie behaved much like a typical newborn for the first two weeks of her life.
At 16 days old, Allie was diagnosed with a life-threatening infection that required her to be transferred to another hospital where surgeons removed two-thirds of her small intestine, an organ that absorbs nutrients from food. The infection also affected her brain, causing it to stop growing and leaving Allie with less than half of her cerebellum.
For the next three months, Allie continued to surprise doctors, and on December 31, 2009, Amanda’s original due date, Allie was discharged from the hospital. She weighed 5 pounds and had already had three surgeries, including one for a detached retina and one when her liver began to fail.
“She was not given a good outlook,” Amanda remembered.
The Road to Richmond
For the next seven months, Amanda and John made the four-hour round trip from Danville to Winston-Salem, NC a few times a month to see Allie’s doctors. After researching children’s hospitals, especially pediatric gastrointestinal specialists who specialized in short bowel syndrome, they decided to move to Richmond and began treatment at Children’s Hospital of Richmond at VCU (CHoR).
“Allie weighed 7 pounds, had just started wearing newborn clothes and had no neck or torso support,” Amanda remembered of Allie’s initial visits to CHoR. Through CHoR’s Early Intervention Program, Allie began seeing a physical therapist who Amanda said, “quickly learned Allie’s personality and worked with it.” Within weeks Allie was sitting unassisted. She took her first steps at 20 months and used a walker until last year.
Allie’s physical therapist was also instrumental in connecting then 2-year-old Allie with an occupational therapist who started working with Allie to help her sensory integration disorder. For years, Amanda said Allie, who also has an auditory processing disorder and has learned to use sign language, “screamed all the time and would meltdown when people spoke to her.” She didn’t like people touching or getting too close to her, which made it difficult for her to leave the house or interact with her siblings.
“Through the use of play, Allie has learned to decrease her tantrums,” said Andrea Johnson, M.Ed., OTR/L. “We’re also developing her fine motor skills to help with more signing.”
While Andrea coordinates treatment and goals with Allie’s other therapists, she credits Amanda with being “the glue that holds everything together.”
“She sends pictures of what Allie is doing at home,” Andrea said, “and is constantly talking to Allie’s therapists and doctors.”
Around the time Allie started occupational therapy, she also began receiving services through CHoR’s Feeding Program. Allie, who was getting all her nutrition from formula through a gastrostomy tube, would not tolerate any foods by mouth. As Andrea worked on Allie’s sensory issues, Allie’s feeding therapist helped Allie learn to tolerate touch on her face and items in her mouth.
“All the therapists are good about communicating with each other,” said Amanda. “They find ways to incorporate other therapy goals into treatment.”
“It’s important to be on the same page,” commented Jesse Silliman, MS, CCC-SLP, Allie’s speech therapist, of the interaction she has with Allie’s other therapists.
Earlier this year when Allie was having difficulty with OT, Jesse said she and Andrea worked together to switch appointment times and ease Allie into her therapy week by scheduling speech, her favorite therapy, first. Twice a week for an hour each session, Jesse, who Allie says makes her “so happy,” and Allie play with games and toys to increase Allie’s verbal and sign language vocabulary, focusing on phrases like ‘I like,’ ‘I want’ and ‘I hurt’ to clearly express wants and needs to other adults and children.
“Allie is resilient, hard working and bright,” said Jesse. “That will get her a long way.”
Making Her Way
Allie’s bubbly personality and sometimes noisy nature are well-known around CHoR’s Brook Road Campus. As she makes her way to her appointments, other therapists peek out of their rooms to say hello. At this fall’s Fire Prevention Day event, Allie did not get overwhelmed by the crowds of young children on the hospital’s front lawn and was encouraged by therapists helping at the event to use words to participate.
“The therapists took her in,” Amanda commented. “I love the community at Children’s Hospital.”
This past summer Allie graduated from the Feeding Program and loves to eat green beans, pickles, black olives and Salisbury steak. In the last year she has begun using three to five word sentences and although she still uses sign language, is more likely to try using words first. Diagnosed with cerebral palsy as a toddler, Allie can now walk short distances wearing only leg braces and is learning to pedal a bicycle and climb stairs. Because her stomach empties slowly, she continues to have gastrointestinal issues but is no longer refusing food. She recently got glasses in her favorite red color and is working on left to right eye movements for pre-reading skills. She is also learning to manage her sensory issues and a motor planning disorder that can paralyze her with fear and has begun joining Amanda at speaking engagements to share her story at events for Children’s Miracle Network Hospitals.
“Allie is always going to have to fight for what she wants,” said Amanda, who encourages Allie to set her own goals. “Her doctors and therapists have a true desire to see Allie succeed and do everything they can to make that happen.”