House hunting isn’t easy, especially when you’re searching for an affordable wheelchair-accessible home. But thankfully, we managed to find a beautiful one that fits our monthly budget for rent, and drumroll … it’s wheelchair accessible! We’ve been planning to move for quite a while. My 6-year-old son, Cayden, isn’t…
Daily living
Parents never want to see their children experience anything hard or painful. Yet I can recall many times when I’ve had to put my 6-year-old son, Cayden, through something difficult for his own good. One of my memories from his early years is when he had to get a…
Life has been a bit hectic lately. My family has many changes coming up, and each one brings its own challenges. I’ve lived in the same town for most of my life, as have my children. But that may soon change. Our family is growing, and we’ll be welcoming another…
My 6-year-old son, Cayden, is no stranger to ear infections. When he was 2, we decided it was time to solve the problem of recurring ear infections once and for all. His otolaryngologist recommended implanting ear tubes. Tubes are pretty common, so I wasn’t overly concerned about the…
My 6-year-old son, Cayden, loves to spend time outdoors, especially at the new accessible park in our town. He also likes to blow bubbles, paint rocks, and throw a ball. He basically enjoys everything that most children his age like to do. Cayden has never been able to walk…
A few days ago, my 6-year-old son, Cayden, woke us up with quite a surprise. We were getting everything ready for his biweekly enzyme replacement infusion, the treatment for his infantile-onset Pompe disease. When I woke up Cayden that morning to get him prepared for the day…
Last week was a busy one for our family. In addition to delivering a talk about Pompe disease to my son Cayden’s kindergarten class, we also celebrated his sixth birthday. The week was filled with fun and joy as Cayden was able to celebrate another year of life.
An easy survey of 20 questions agrees well with other tools used in clinical practice to measure physical function in people with late-onset Pompe disease (LOPD), according to a study that suggests it may aid in measuring and tracking symptoms over time. Having a reliable way to measure physical…
This school year is the first for my 5-year-old son, Cayden. He attended preschool when he was younger, but now he’s in kindergarten at a public school, where things work a little differently. One of the biggest of those differences is transportation. For preschool, parents were required to…
In our school district, the first two days of the holiday break were reserved for parent-teacher conferences. I quickly scheduled a meeting with my 5-year-old son Cayden’s kindergarten teacher. Because this year is his first in elementary school, it was also my first time attending such a conference. Before…
Recent Posts
- How my daughter’s medical backpack became a symbol of freedom
- Lung function test may catch respiratory issues in late-onset Pompe
- Wanting to blend in, so the rare care isn’t the first thing that’s seen
- Home enzyme replacement therapy safe for Pompe disease children
- What ‘lucky’ really means for a child with Pompe disease