Coat Weather: To Zip or Not to Zip
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…
Five Servings of Strength
— Michael Casten
Michael is married and a father of three, one being a child with SMA Type II (born in June, 2011). He is an educator who has worked directly with children and their families since 1994. He loves his family, writing, working with his hands, and taking road trips. Michael holds a bachelor’s in psychology (1994) and a master’s in education (2001).
Featured Post
Ella Has Fun While Sheltering at Home
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,…
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Ella Helping Ella
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…
The Simple Joy of Riding a Bike
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…
Strength in Time
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…
The Middle Child
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…
Always Work to Be Done
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…
Answering Ella’s Toughest Questions
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…
Machines are Just One Part of Caregiving — 24/7/365
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.
Adjusting to Overnight Feeding and More Solid Foods
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…
She’s Musical
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…
Fear of ‘Kneebolizers’ Vanishes in Expert Hands
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…
New Wheels for Ella
“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…
