We’re adding a new specialist to my son’s care team
Last week, my 5-year-old son, Cayden, had his annual well-child check with his pediatrician. He wasn’t due for any vaccines, and for the most part, the visit was fairly uneventful. We try to…
My 6-year-old son, Cayden, has been using a feeding tube since he was a newborn. Although I feared the tube at first, I’ve learned to be thankful for its benefits. Cayden required a…
Read moreLast week, my 5-year-old son, Cayden, had his annual well-child check with his pediatrician. He wasn’t due for any vaccines, and for the most part, the visit was fairly uneventful. We try to…
Typically, when we think of playgrounds, we envision children running around, having the time of their lives. But this isn’t always the case. For my 5-year-old son, Cayden, it’s a bit hard to enjoy…
Recently, we were putting things in place for a road trip this summer. We’d planned to attend a pediatric Pompe disease conference in July, hosted by Duke University in North Carolina. My grandmother…
Last week, my 5-year-old son, Cayden, had his first karate class. His preschool class took a field trip to a local karate center. Parents were invited to join in on the fun. While…
Last week, my 5-year-old son, Cayden, had a checkup with his metabolic doctors during a clinic day for his Pompe disease. This visit was mostly typical of those events and went about as…
When I was younger, I never imagined that I’d become a teen mom. I was scared to share with my mom the news that I was pregnant. I didn’t know how she’d react…
Until last year, my 5-year-old son, Cayden, rarely talked. He said a few words here and there, but they were hard to understand and limited to about five to 10 words total. His struggles…
My 5-year-old son, Cayden, is no stranger to enzyme replacement infusions. He’s been getting them on either a weekly or biweekly basis since he was only 4 weeks old. It’s currently the only…
My 5-year-old son, Cayden, recently started a preschool program. When he started going, I was a little paranoid about whether he’d make friends. After a month there, however, he sure has made a…
Typically, my 5-year-old son, Cayden, who has infantile-onset Pompe disease, has no problem going away with family for the weekend. He used to spend weekends with either my grandparents or his paternal grandmother.
My 5-year-old son, Cayden, was really looking forward to starting preschool at the end of February. But after only a week of school, he became sick. While this didn’t really come as a surprise,…
Last week, we celebrated my son Cayden’s fifth birthday. Birthdays are a big milestone for all children, but this year felt extra special for us. I never knew if I would see this day,…
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