Seven-year-old’s question everything; it’s part of how they learn about the world. Ella is no different. She questions us about many things. Of course, in the heat of frustration or while being reflective on any given situation, the questions revolve around SMA. Ella…
Our nights are broken up by machines beeping, or Ella calling for us to reposition her as she sleeps. Having a child with SMA means interrupted sleep is par for the course. Overnight, Ella has her feeding pump running, giving her…
Ella has lost five pounds over the past month, which has been the result of a dietary change. Before this change, she was primarily getting her nutrition via G-tube, while on an amino acid diet (known as an AA Diet) consisting of several nourishing liquids…
Ella sits in the waiting room every Monday at 3:30 p.m. as Ava and Henry receive their instrument lessons. Ava plays the violin and Henry the piano. While she waits, Ella either reads or plays on her iPad, practicing patience. At home, Ava and Henry are to practice…
Ella has been in physical therapy (PT) and occupational therapy (OT) most of her life. She has had several therapists over the years, but our current ones have been part of our lives for quite some time. The relationships have blossomed to one…
“How come Ava and Henry get to go to their friends’ houses and I don’t?” cried Ella as Henry left to visit a friend. “It’s just not fair!” As Ella grows older, her needs change, mature, and expand. She’s at an age when she wants…
Ella’s excited to start school. She adores her school, her teachers and her classmates. Now that summer is coming to a close, Ella counts the days until she can begin going to school every day. Each day this week, she barrels in and out of the house, onto…
“I’m sorry you have SMA,” Lindsay said to Ella. “Me too,” I echoed. Ella’s head moved to the side a bit as she looked at us and said, “I know.” Ella is becoming increasingly frustrated with having SMA. She has…
Bathing suits, sunscreen, towels, and water. The key ingredients for some summertime fun. Almost all kids love the water and Ella’s no different. We all know the feeling of floating, yet for Ella it represents a sense of freedom — freedom from the constraints…
Children engage in all kinds of play throughout the day, from quiet play to rambunctious play. Ella is no different, although her terms of engagement can sometimes be different from your typically developing child. When she goes to the park, she races…
