How is ayrie?
Ayrie has recurrent laryngeal papillomatosis (RRP), a very rare disease. It was first described 300 years ago and is the most common benign tumor of the larynx, afflicting approximately 4.3 per 100,000 infants and children in the United States. There is no treatment for RRP, just surgical removal. Ayrie has had four surgeries since the first one in late February, and we just scheduled his fifth surgery for September 2nd.
There is an increased chance for permanent damage to the vocal chords when there are more than four surgeries per year, and we are about to have five in six months. So next time, they are going to apply an anti-viral medication.
When we go in for check-ups, the put a camera through his nose, and down into his throat. He hates it! It’s painful and triggers his gag-reflex. As soon as we show up to the doctor’s office he covers his nose with both hands and begs me not to let them put the camera down his throat. They are not fun appointments.
But the part that was fun, was that we took the train to the hospital. He loved that. He was a little scared that the train would fall off the track (they always do at home!) but felt reassured pretty quickly once the train started moving. The train in Chicago is up above the roof-tops so it can be a beautiful ride.
Since he hasn’t been able to talk, and we don’t know when he will get his voice back, I have been trying to think of how to make the best of this situation. We got some great advice from a Developmental Psychologist who recommended helping him articulate his feelings, lots of manipulative-based play, a picture book of words that he uses frequently, sign language and lots of physical activity.
Today I asked Ayrie if his friends at school sometimes have trouble hearing him talk. He got quiet and reflective before answering ‘yes’. I asked him how that makes him feel and he said ‘I feel bad’. It breaks my heart.
Pre-school is around the corner, so I am also thinking a lot about what kind of environment will work with him. I want to find one that has the time and the inclination to stop and take the time to hear what Ayrie is saying. Suggestions are always welcome 🙂