caregivers

I’ve become so used to my routines that when an abrupt change happens, it throws me off. Recently, a substitute nurse filled in for the one who usually attends school with my 5-year-old son, Cayden, who has infantile-onset Pompe disease. Cayden is accustomed to having a nurse with him…

Family reunions are big and important events on my dad’s side of the family. Not long ago, my grammy (grandmother) got to host our first family reunion in two years. We usually have a family reunion every year, but during the COVID-19 pandemic, that didn’t happen. I was ecstatic…

It’s no secret that COVID-19 has caused a lot of issues for not just the United States, but the entire world. Because of the pandemic, for example, we’ve recently been experiencing issues getting the necessary medical supplies for my 4-year-old son, Cayden, who has infantile-onset Pompe disease. Cayden…

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…

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…

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…

Last week, we again had to take my son, Cayden, on the dreaded 2.5-hour drive to Philadelphia. We usually make this trip to see all of Cayden’s specialists, but this time we went to the dentist. Plenty of pediatric dental offices are in our area, but none are very…

I knew having a child meant that I would lose a lot of sleep, but I didn’t realize the extent of it. Most children sleep through the night by age 4, but my son, Cayden, does not. There are many reasons why sleep is challenging for him, but it doesn’t…

This month, we started back up with home-based therapies for my 3-year-old son, Cayden. He receives a few different services, such as physical therapy, occupational therapy, and speech therapy. Each of them is extremely beneficial for Cayden, who has infantile-onset Pompe disease. He has been getting these different…