breathing treatments

My son is starting to despise his breathing treatments

My soon to be 5-year-old son, Cayden, goes through a lot at his young age. Due to his infantile-onset Pompe disease, he has experienced many hardships. One of our current struggles is getting him to let me administer his breathing treatments. One symptom of Pompe disease is breathing problems.

I’m Grateful We Were Able to Manage My Son’s Cold From Home

It all starts with the dreaded cough and snotty nose. Next thing you know, you’re rushing your child to the doctor to make sure they’re OK. These days, most parents don’t get too worried about a common cold, unless COVID-19 is a concern. But once that’s ruled out, things…

A Lesson Learned About On-the-Job Medical Training

Every doctor, nurse, and respiratory therapist has to start off somewhere. They don’t just jump right into their position. People trained in these occupations must complete years of medical school, and undergo extensive training at a medical facility.  Over the years, my son, Cayden, 3, has…

My Son’s ERT Infusion Nurse Is Like a Member of the Family

Getting a six-and-a-half-hour enzyme replacement infusion once a week can be stressful. And I’m not even the one getting it. My son, Cayden, 3, gets an infusion called Lumizyme (alglucosidase alfa) to treat his infantile-onset Pompe disease. While the infusions have become routine for…