Ella has been in therapy since before the day of her diagnosis with SMA. We knew she was late meeting many milestones, so we went to Early Intervention and started physical therapy. For every step forward, she took two steps back. We were dumbfounded. It…
Play dates come and go for Ella, just as for any other 8-year-old. She usually has her friends come over to our house because of her wheelchair. The kids play on the first floor for a while, then they want to go upstairs…
The weather is starting to turn here in Chicago. Rain falls slowly, covering the grass, streets, and sidewalks. Warmer winds are blowing leaves left over from last fall. Spring has arrived. Our accessible van had a rough winter. In the frigid weather,…
Ella has had several surgeries in the past seven years since her diagnosis of spinal muscular atrophy (SMA). Her first was for the placement of her G-tube. This device allows us to supplement Ella’s diet and administer her medications easily. Her second surgery was…
The title of this column is “Five Servings of Strength,” referring to the five members of our family. There’s me (Michael, the father), Lindsay (the mother), Ava (11), Henry (10), and Ella (8). We realized soon after Ella’s SMA diagnosis that it takes the whole…
Henry left the house in the evening to go to a friend’s house for a sleepover. As soon as her brother had departed, Ella began complaining that she never gets to do anything fun. Finding independent activities for Ella has proven to be a…
Ella is beginning to look to her future. She realizes that all of the hard work she puts into her physical therapy sessions will help her in the long-run. She accepts that the Spinraza (nusinersen) injections, which she doesn’t like taking, are also…
Ella has had a full week. Her school held parent-teacher meetings over two days. At Ella’s school, the students lead the conferences. She made a slideshow to showcase her work and then practiced her presentation at home outside of our hearing. The kids had Thursday and…
An early morning rain lent itself to the Chicago traffic. The highway was backed up for miles and we had an hour to get to Ella’s Muscular Dystrophy Association Clinic at Lurie Children’s Hospital. Every six months, Ella has to go and…
It was time to take down the Christmas decorations. Every room was filled with boxes and coffee tables were covered with trinkets. We were working in the living room, which houses a large bookcase. We keep family photo albums, books, and special pictures in the bookshelf.
