parenting

A little over a year ago, I wrote a column discussing the topic of family planning. Recently, we discovered that our family will be growing by one! We have lots of planning to do before my new baby comes next January. Of course, we are happy about the news…

A few months ago, I had to make the hard decision to pull my 4-year-old son, Cayden, out of his preschool class. It wasn’t easy because I knew how much he enjoyed it. At the time, though, his health was at stake. Cayden has infantile-onset Pompe disease, which…

When my 4-year-old son, Cayden, goes to the doctor, it’s usually to see one of the many specialists for his infantile-onset Pompe disease. While they are helpful and the appointments are necessary for us, I know that not every child is normally seen and followed by so many…

When you have a child, you have so many concerns and thoughts. One came up soon after I had my son, Cayden, four years ago. He was diagnosed with infantile-onset Pompe disease at just 1 month. At the time, I had no clue whether I wanted others to know his…

A few days ago, my 4-year-old son, Cayden, visited one of the specialists that he sees less frequently: the otolaryngologist, or ear, nose, and throat (ENT) doctor. Cayden’s been seeing this doctor since he was about 2. These checkups are necessary because Cayden has experienced hearing loss due to…

I’m no stranger to our local urgent care clinics and hospitals. Usually, my 4-year-old son, Cayden, is the patient. Last week, however, it was my turn to need medical help. I had an unexpected fall off a friend’s porch steps and immediately felt the pain. This is my first time…

When strangers notice the differences between my son, Cayden, and other 4-year-olds, they usually have a lot of questions. While I genuinely don’t mind taking the time to educate and inform people about infantile-onset Pompe disease, explaining things over and over can be a bit overwhelming. I can’t expect people…

Infantile-onset Pompe disease has caused a lot of challenges for my 4-year-old son, Cayden. Until recently, he was never able to communicate with us verbally. We depended on a few different types of nonverbal communication devices and techniques, which I’ve discussed before. But his ability to speak just…

Recently, my 4-year-old son, Cayden, had an appointment with his metabolic specialist. This doctor manages everything related to his Pompe disease and is part of a team of doctors that diagnosed him when he was just 1 month old. They also oversee everything related to his enzyme replacement infusions.

Last week, we took my 4-year-old son, Cayden, to the cardiologist, one of the many specialists who help manage Cayden’s complex medical needs. He has been visiting the cardiologist since he was diagnosed with infantile-onset Pompe disease at just 1 month old. When Cayden was diagnosed, he was already…