hospitalization

My 4-year-old son, Cayden, has been receiving multiple therapies every week for years. He started physical therapy when he was an infant, then speech therapy, and eventually occupational therapy. All are important for those with infantile-onset Pompe disease, which Cayden was diagnosed with at just 1 month.

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 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…

My family had managed to avoid being exposed to COVID-19 until recently. Earlier this month, on the same day I got my vaccine booster shot, I was exposed to the virus by my mom. She woke up feeling very sick the next day, and shortly after that, all…

Every time I experience something scary with my 3-year-old son, Cayden, it really takes a toll on my mental health. While this is to be expected, it’s certainly not easy to deal with.  I fell into a deep depression after Cayden was diagnosed…

Last week, I experienced every parent’s worst nightmare. When my 3-year-old son, Cayden, woke up the other day, I noticed he was coughing a lot more than usual. I prepared to do what we do every morning: remove his BiPAP machine and deliver his breathing treatments, which consist of…

Last week, my 3-year-old son, Cayden, was discharged after a two-month hospitalization due to pneumonia caused by a human parainfluenza virus. Several unfortunate events occurred during this time, and as a result, I’ve been left with a variety of emotions, both good and bad. Coping with…

We are no strangers to our insurance company. While it’s been great in most aspects, we still have to battle it from time to time. Unfortunately, this happens quite often with rare disease patients.  Due to his infantile-onset Pompe disease, my 3-year-old son, Cayden, has to…

I’ve previously discussed how doctors and nurses can help in difficult times of health crises. But family and friends can be a big help, too. My 3-year-old son, Cayden, has been hospitalized in recent weeks, so I’ve pondered some of the ways that my family and friends have…

Dealing with stressful situations can be hard for anyone, but I’m especially struggling because my 3-year-old son, Cayden, has been hospitalized since Aug. 5. In my previous column, I mentioned that he had to be intubated due to pneumonia. This has been very hard on me mentally. And because…