Layoni was a vastly medically complex baby when she first arrived at La Rabida, unable to tolerate even being touched or having lights on in her room. Today she loves sitting in her chair, learning, and playing, and is getting stronger every single day.

From her doctors and nurses to her therapists and infant development specialist, Layoni’s whole care team is dedicated to her growth and development. In fact, Layoni has had the same doctor, speech-language pathologist, physical therapist, and infant development specialist since day one! 

“Layoni has been here for every single one of her three birthdays,” says Trudy Johnson, advanced practice nurse. “And with each year has come new challenges and new achievements”

Layoni is learning and growing every day, and her social and cognitive development has improved in leaps and bounds. While she once was unable to even enjoy being held by her mother, she now loves going on walks, reading books, rolling around, even drawing.

“This summer Layoni reached a huge milestone when she was able to spend more than an hour in her stander,” says Margie Mizera, Layoni’s physical therapist. “This helps her play and visit in a standing position, like children her age, while boosting her lung development, core strength, and digestion, letting her experience more of life. She loves it!”

Learning to move and play with multiple medical difficulties can be a painfully slow process. For her first year of life, Layoni could not tolerate lying on her stomach. With the help of her therapy team, she has learned to roll from her stomach to her back on her own, and even prefers to sleep on her stomach now. She sits up by herself for a minute or two, and loves being out of bed in her special adaptive chair, which helps her work on playing instead of on sitting.

“Layoni is on a life-long journey and requires full-time care,” says Angie Atian, her infant development specialist. “We work hard to achieve new milestones with her – big and small – and she’s up for the challenge.”

One of Layoni’s major milestones was when she began to show interest in bringing things like toys, teethers, spoons, and even her fingers to her mouth. While most babies start putting everything in their mouths naturally. Layoni was initially orally averse due to her extended hospitalization, where many experiences near her mouth—such as suctioning—were not positive. When she was ready to start putting things to her mouth, we could explore tasting purees and even drinking water from a cup.

“I like that the doctors here treat us like family and are realistic, but full of hope,” says Lexis. “That hope is what’s made the difference in Layoni’s life.”