My Son Is Finally Showing an Interest in Eating
From the time he was born four years ago until now, my son, Cayden, has struggled with eating orally. Because of his infantile-onset Pompe disease, Cayden has weak muscles all over his body,…
For the past two weeks, my children and I have been unable to catch a break from the common cold. It all started with my 6-year-old son, Cayden, who brought home an illness from…
Read moreFrom the time he was born four years ago until now, my son, Cayden, has struggled with eating orally. Because of his infantile-onset Pompe disease, Cayden has weak muscles all over his body,…
With Christmas right around the corner, I’ve had many people in our family ask what they can get my 4-year-old son, Cayden, for the holiday. A lot of toys aimed at children his age…
My 4-year-old son, Cayden, completed a sleep study in October. We’ve been waiting for his pulmonary specialist to call with the results, and we finally received them. While we didn’t get the…
As parents, we tend to put our children before ourselves — especially when they have special needs. Some of our children require numerous therapies and appointments with specialists. They may also need more…
A few weeks ago, my 4-year-old son, Cayden, had a rare occurrence in which the implanted port in his chest stopped working. It was a scary situation and the first time it had…
When you have a child with a rare disease, it can be difficult to find people who are both comfortable and willing to care for them. It’s been a challenge to find people…
Over the years, our family has become quite familiar with various types of medical and adaptive equipment. My 4-year-old son, Cayden, has used several medical and adaptive devices to help make his life…
At my 4-year-old son Cayden’s last appointment with the otolaryngologist (ears, nose, and throat doctor, or ENT), the doctor and I decided that we should look into getting a new set of tubes for…
Recently, we had a weird occurrence. For the first time, we had trouble accessing the port of my 4-year-old son, Cayden, for his infusion. A port is a small device that’s placed under…
My 4-year-old son, Cayden, had to do a sleep study this month. Although he’s done them before, it’s been over two years since his last one. At his most recent checkup, Cayden’s…
My 4-year-old son, Cayden, had a routine checkup with his metabolic specialists during a recent Pompe clinic day. Although we always know what to expect during these visits, that’s both a blessing…
I attended an in-person educational presentation on Pompe disease this month in Hershey, Pennsylvania, that was hosted by Sanofi, the creator of two drugs that are treatment options for Pompe. I…
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