Ella, 10, the youngest of our three children, is thriving. She has friends from school, in the neighborhood, and online. She sings in a community choir, and occasionally plays with her siblings. Due to Ella’s disease, spinal muscular atrophy type 2, which directly affects her respiratory…
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Cold winds are beginning to blow the leaves off of the trees. A circus of colors swirl in the air, never resting on the ground. Winter is on its way. Getting Ella ready to leave the house during the summer and spring…
Over the years, we’ve trained a few people on how to care for Ella. We have to show them how to stop and start her feeding pump, disconnect and connect the feeding tube to her G-tube button, lift her from her chair, take her…
Kids and adults alike love to ride bikes. Exercise, travel and autonomy sprout from the experience. For a person with SMA, the experience easily can elude them. Their legs aren’t strong enough to move the pedals, their balance isn’t sufficient to master the task…
The trip to downtown Chicago takes but an hour for us, as we make our biannual trip to Lurie Children’s Hospital for Ella’s clinic. This one was an eye-opening experience. Every six months, the neurology, pulmonary and therapist team members get together…
The middle child holds a special place in everybody’s heart — they’re the peacekeeper, the negotiator, the one most likely to feel overlooked. Henry fits the bill to a T. He is Ella’s older brother and Ava’s younger one, and he seeks acceptance from…
Ella’s a hard-working 7-year-old. She rises early in the morning for school. While at school, she does what all of the other kids do and more. She has therapies to go to (physical therapy and occupational therapy) throughout the week. They work her hard…
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…
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