feeding tube

My son, who requires tube feeding, is upset he can’t eat orally

Because of his infantile-onset Pompe disease, my 5-year-old son, Cayden, has always relied on a feeding tube for nutrition. For the first six months of his life, he used a nasogastric, or NG, tube. After that, he needed something more permanent, so he underwent surgery to have a…

Adding nutrients to my son’s diet led to unexpected issues

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 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, including his mouth and the muscles involved in swallowing. He can’t swallow properly and often would…

Teaching Children That Not Everyone Is the Same

I take pride in teaching children about disabilities. The earlier they learn, the better. These small lessons can be very beneficial as children grow up and learn that everyone is different.  My 3-year-old son, Cayden, is only 15 months younger than my little brother, Larry Jr.,…