caregivers

Philips, a company that manufactures and sells respiratory equipment to a big portion of the United States, recently posted a statement saying it was discontinuing “the sale of hospital ventilation products, certain home ventilation products, portable and stationary oxygen concentrators, and sleep diagnostic products.” This change was a shock…

Not everybody is a morning person, myself included. Nonetheless, the whole idea of sleeping in went out the window years ago when I had my son Cayden, who’s now age 5. Cayden is a fairly good sleeper, but between his school and appointments, we rarely have a day when we…

This year, Thanksgiving felt quite special. For starters, it was the first time I celebrated with both of my kids. My youngest, Kyree, turns 1 three days after Christmas, and so far, his first holiday season has been so much fun. As I reflected over the holiday, I took some…

Oftentimes, parents of children with rare diseases don’t have time to focus on themselves. We have so much on our plates because of everything that our children go through. This causes us to push our problems aside, especially when it comes to mental health. I recently found myself…

My 5-year-old son, Cayden, will soon be getting a new kindergarten teacher. While this will be a big adjustment for all the children in his class, it will be a bit harder for Cayden, who has some special needs. Cayden’s original teacher recently told us that she has accepted…

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…

My 5-year-old son, Cayden, has seen a nutritionist his entire life. In his younger years, this was important because Cayden was underweight. Recently, he has gained weight, but the visits are still necessary because he’s tube-fed. Thankfully, Cayden is able to see his nutritionist at the same time as…

My 5-year-old son, Cayden, is on track with most children his age when it comes to height and weight. But we struggled with his weight for years. He was labeled “failure to thrive” when he was just 4 weeks old. It took until about the age of 1 for…

I wrote a column this spring about my 5-year-old son, Cayden, needing to see an orthopedic specialist again. Well, we finally had that appointment late last month, with a doctor he hadn’t seen before. It didn’t go as well as I’d hoped. When Cayden’s metabolic specialist sent the…

Last week, both of my children ended up sick. It started off on Memorial Day when my 5-month-old son, Kyree, developed pink eye. The doctor’s office was closed on the holiday, but I got him seen the next day. Aside from the pink eye, he was acting completely normal and…