My 5-year-old son, Cayden, recently had a swallow study done for the first time since he was 3. Although he cooperated much better this time, we still didn’t get the desired results. When he was younger, Cayden required many swallow studies due to his infantile-onset Pompe disease. Because…
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I remember a day when I could play three softball games on a single, sunny Sunday afternoon in Spokane, Washington. As a valuable left-hander, I was allowed to pitch and spend more time on the mound. Granted, these experiences were in my 30s, and the league was co-ed and affiliated…
My 5-year-old son, Cayden, had a blast in preschool this year and made lots of new friends. I was nervous he wouldn’t make any because he’s a bit different from the other children in his class. However, I quickly realized I had nothing to worry about. Cayden has…
Life has been busy lately. My wife and I traveled to Spokane, Washington, in June for our son Devin’s high school graduation, and then our friends from Montana visited us in Southern California for a week. I also saw my neuromuscular specialist and did some routine six-month tests and…
Having two young children has already been quite an experience. They depend on me every single day, though, thankfully, they’re pretty easygoing. I’d been a little nervous about their almost five-year age gap, but the way they’ve formed a bond has been amazing to witness. It’s so sweet to watch…
I wrote a column this spring about my 5-year-old son, Cayden, needing to see an orthopedic specialist again. Well, we finally had that appointment late last month, with a doctor he hadn’t seen before. It didn’t go as well as I’d hoped. When Cayden’s metabolic specialist sent the…
I’ve always thought the stereotype that “spa days are for the ladies” was a thing. Now I realize that spa days are for everyone. And they especially benefit me, a guy who has a muscle weakness disease called Pompe. There are days when my legs just feel achy, my…
Last week, we had our first pool day of the summer. I got pool passes for myself and my 5-year-old son, Cayden, who really enjoyed it last year. In fact, he’s been consistently asking to go again. But here in Pennsylvania, summer is the only time it’s warm enough to…
Back in the day, I had to do a report for school and needed information about a country. I don’t remember which one, but I remember asking my mother for help writing the report. Her response was, “Go grab the Encyclopedia Britannica, the one that starts with the first letter…
Last week, my 5-year-old son, Cayden, had his annual checkup with the gastroenterologist. It’s been over a year since we last saw her, but he’s been doing so well with GI issues that she told us we no longer have to come back! This was great news that I…