Hearing Loss

Today Ainsley had a behavioral hearing test and I realized that unfortunately I didn't really know much about hearing loss. Here is some info I got from a website:

The early identification of hearing loss permits the initiation of
treatment and rehabilitation of the hearing-impaired child at a very young age. The child can then learn more normal speech skills when hearing loss is identified early and intervention begins.

Hearing loss can range from a mild impairment to profound loss. Many people think that hearing is only graded as normal or deaf. They may also think that the child is hearing normally if he or she is responding to sounds and voices. However, there are many subtle gradations between normal hearing and deafness and a child's hearing loss may not be apparent.

For example, it is common for a child with moderate hearing loss to develop speech and language and yet miss over half of what is being said. A child in this situation will have a distinct disadvantage in development and learning and will often reach a point where advancement stops unless the hearing loss is detected and treatment begins.

Ainsley is at risk for problems with speech and language already because of her trach. The fact that airflow happens through the trach means that air does not pass through the vocal cords so she is unable to make sound unless she is wearing a special speaking valve, a Passey-Muir Valve (or PMV for short). But she also has a malformation of the cerebellum, the part of the brain which controls, among other things, the processing of language. Two big strikes against Ainsley for the normal development of language skills.

The hospital did a hearing screening when she was inpatient and the results were within normal. They recommended a behavioural test at a later date. When Ainsley was 9 months old we tried but she was uninterested in turning toward the sound and was far more interested in watching the person who was supposed to be keeping her attention so her head would stay in the forward position, until a sound was made to either side. So we were told to come back when we felt she would developmentally be able to perform the test.

We knew she could hear us. She can even understand certain familiar commands such as no, come, give me, hi, and bye-bye. But she is far far behind where she should be for her age. I assumed the fact that she could hear us meant she could hear normally. Little did I know that there could be losses that make some of the sounds drop out, making language very difficult to understand. Now I am concerned because this would explain why some things she picks up quickly and other things, especially verbal commands, she doesn't.

She was unable to perform the test again today. This time she started to cry every time the sound was played about half way through the test. It started moments after the helper blew some bubbles into her face and they popped. It's almost as if it startled her and she realized "A scary weird rabbit is drumming and lights flash every time there is a weird voice or a strange sound? I'm locked in a padded room without my mom? What the hell is going on here?" She wasn't having it. No matter what we did. Even when I came in the room, held her or replaced the bubble blowing girl as the distractor.

The audiologist, who unfortunately had a profound hearing loss herself, was difficult to understand and communicate with. I left not being able to get answers to the questions I had partially because of that and also because we'd run out of time. She recommended we reschedule for 1-3 months out. We had already had to reschedule once because she had a ruptured eardrum. And this made the second failed test.

In addition at the beginning of the test she placed some special earplugs in to measure her eardrum function. The response was somewhat flat. The last time she'd been tested the result was the same, but there seemed to be fluid in her ears then. Now that we know there is no fluid I am very concerned about this finding and I want answers.

So when I expressed my concern at rescheduling, since we have no idea if she'll be able to perform the test at the third attempt either, the audiologist suggested a BAER under anesthesia. I rescheduled Ainsley's airway scope and salivary gland botox procedure so that she could also have a BAER at the same time and avoid a second anesthesia. That puts the scope into mid-March. More waiting. What's new. Over two years into this journey to Holland I am still not any better at waiting.

As I drive home with our nurse my head is reeling with the realization of what may be going on. So later I checked Ainsley's medical binder and found the report from her inpatient evaluation and found that it was, in fact, a BAER that was done. So now I am questioning whether a second BAER is going to give us the information we need. I have a call into the department and hope to hear back before the weekend.

My heart is sinking thinking there is a chance we missed something as important as a hearing loss. Please think positive thoughts for Ainsley while we wait for answers.