Hearing The News

It seemed to us anyway that Dylan was responding more to noises. He would respond to sounds in the room. Usually, but not every time. We simply could not tell what his real hearing abilities were.

Melissa was desperate to find out what Dylan's real hearing ability was. She took him for an additional hearing test with an audiologist. She brought him back to New York Eye and Ear Hospital for the test. The audiologist tried to run the test, but Dylan simply would not cooperate. He was unhappy and noisy. At times when he was quite his breathing prevented the audiologist from getting any results.

Perhaps I should explain about the breathing. For the first 2 years of Dylan's life, he would breath with a rasp. Anyone within a few feet of him would hear it. To someone who did not understand what Dylan had, it sounded like he was choking. We have been stopped on multiple occasions in public places by people telling us that our child was choking. We of course then have to explain to them that he was not choking, that he was born with a syndrome and that was his normal way to breath.

It used to get to me when people would stare at us when we were out in public with Dylan, because at first glance there doesn't appear to be anything wrong with him, but he sounds like hes choking and we are just ignoring it. In the eyes of a normal parent, we probably appeared to be negligent parents. What was I supposed to do? Wear a sign around my neck explaining Dylan? Never leave the house with him? Neither was an option, so I just got used to the stares. Eventually it stopped bothering me. As he got older, it also became more apparent that he was a disabled child and people would no longer give us the evil eye when they saw us. Now it was more stares of morbid curiosity.

His ENT (Ear Nose Throat) doctor said that the raspy breathing was due to a smaller than normal airway. She had no explanation for why it was that way and there was no reason or need to fix it at that time. It was just another symptom of the syndrome.

Thankfully, I have noticed in the last few months that the raspy breathing has somewhat decreased. He still has raspy breath when he gets very tired, but usually you cannot hear him breathing anymore. This is probably due to him getting older and his airway getting bigger with the rest of his body.

Let me get back to my original point. Due to the breathing noises the audiologist could not get any good results. The only way for us to find out what his hearing level was would be to have Dylan placed under anesthesia again.

Due to all of Dylan's other medical and mental issues, I did not think it was that important for us to find out what his hearing level was to justify another round of anesthesia. We were told that the most accurate results would not be available until he was older anyway. We decided to hold off on doing the test until later.

His ear tubes lasted nearly a year. Then like clockwork they both failed and he was back at New York Eye and Ear for another surgery to have new ear tubes implanted. We wanted to minimize his exposure to anaesthesia so we decided to kill 2 birds with one stone. We were hoping for 3 birds, but we were unable to schedule a hearing test at the same time as the ear tube surgery. We were however able to schedule another surgery at the same time. A surgery on his tear ducts.

Dylan would constantly have tears rolling down from eyes. We had taken him to an eye doctor who believed that his tear ducts might have been clogged or blocked. She would need to take a surgical look to find out what the issue was and to determine if he needed a tear tube. Fortunately, we were able to schedule both surgeries at the same time.

The result of the surgery was that Dylan had a new set of ear tubes and he also did not need tear tubes. His tear ducts had been sealed. The surgeon had opened them up and they appeared to be functioning normal. This was a minor relief for us. We would not need to replace tear tubes every year at least.

Finally when Dylan was around 18 months, we finally got the hearing test for him that would give us the results we needed. He was placed under anaesthesia and the test was run. The test showed that Dylan had pretty bad hearing loss. He had 50% hearing loss in his left ear and 80% hearing loss in his right ear. He was also unable to hear high pitch sounds.

We had hearing aids made for him so that he could hear better. He is currently on his second set of hearing aids as he had outgrown the first set.

The results from the hearing aids have been mixed. He doesn't hate wearing them, but due to the odd shape of his ears they tend to fall out easily. He doesn't seem to get much benefit from wearing them. We were hoping to see more responses to sound from his wearing the hearing aids. His responses to sound with and without the hearing aid do not really differ.

We were also hoping that as he wore them and heard more sounds, he would be more vocal as well. We were even a little bit blindly optimistic hoping that maybe he would be able to say a word like "mom". (This hope was probably just a fall back into the denial stage.) Sadly that has not come to pass. His vocalizations have barely changed since he was 1. He is now over 2 years, 8 months. Our hope is that as time goes on, he will pick up more sounds and try to mimic them. We can only wait and see...