feeding

Exploring feeding therapy for my son with Pompe disease

I recently attended a meeting for my 6-year-old son, Cayden, at his elementary school. So many people are working with Cayden at school, including his teacher, nurse, and physical, occupational, and speech therapists. Because of this, we felt it was important for all of us to sit down and…

The results of my son’s latest swallow study were disappointing

My 5-year-old son, Cayden, recently had a swallow study done for the first time since he was 3. Although he cooperated much better this time, we still didn’t get the desired results. When he was younger, Cayden required many swallow studies due to his infantile-onset Pompe disease. Because…

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…

Explaining Hard Topics to My Rare Disease Toddler

Getting a toddler to understand things is a hard enough task by itself. However, trying to get my 3-year-old son, Cayden, to understand the things he has to go through due to his Pompe disease is even more challenging. Because of Pompe disease, he has been through more hardships than…