Columns

Our new pool float is designed for my son’s limited mobility

Now that summer is here in full force, I’ve been finding things to do with my 6-year-old son, Cayden, and his baby brother, Kyree. We’re now battling a terrible heat wave here in Pennsylvania, which makes going outside miserable. We’ve been experiencing temperatures in the 90s for days on end,…

A rare scheduling snafu catches me off guard

I was recently confronted with some scheduling issues. While it’s not the first time this has happened, it’s also not very common. I was on my way to the lab to take my glucose test for my current pregnancy when I received a text from our home nursing agency’s case…

Increasing a dose of medicine can be nerve-wracking

Note: This column describes the author’s son’s experiences with Nexviazyme and Lumizyme. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy or changing its dose. My 6-year-old son, Cayden, has received infusions of enzyme replacement therapy for the entirety…

A new wheelchair-accessible home is perfect for my son with Pompe

House hunting isn’t easy, especially when you’re searching for an affordable wheelchair-accessible home. But thankfully, we managed to find a beautiful one that fits our monthly budget for rent, and drumroll … it’s wheelchair accessible! We’ve been planning to move for quite a while. My 6-year-old son, Cayden, isn’t…