Interim audiology visit

Early in the year, Robin was suffering from a cold and a cough. We noticed that her levels of hearing seemed to be dropping. Matt and I were constantly saying, “She’s a little more deaf,” and as time passed, I realized that we said it a lot.

We couldn’t describe our experience, but when we would walk into her bedroom and talk to her without her hearing aids, she would not know that we were there unless we touched her shoulder. It was a completely new experience, as we spoke louder to her without hearing aids. She can still listen to us.

Even when she wore her hearing aids, we could tell that something was wrong. She would say, “Mommy I can’t here you,” so we knew there was a problem. We were worried because we knew that with Robin’s pended syndrome, any hearing loss could be permanent and progressive. So we kept a close eye on any changes. She also needs to be cautious about banging her head. During this period, we noticed that her hearing levels were dropping.

We took her to the audiology clinic for a checkup because her next hearing test would be too far off for us to wait. We were worried and upset by the change in communication. Imagine how Robin felt.

She’s bright and positive, so unless she tells me she can’t listen, you would never know she is struggling. When I tell Robin something, and she smiles or nods, it makes me sad. I know that she didn’t hear me, but she was trying to make me happy about our conversation. I’m sure she’ll be doing that for the rest of her life, and I wish it didn’t.

Two lovely doctors conducted an inner-ear pressure test at audiology to determine if congestion was present. The examination revealed that although there were no visible obstructions in the ear canal, some inner ear congestion was current. Then, they did a play-audiometry test to test Robin’s hearing with different frequencies and volumes.

Her hearing levels dropped, as confirmed by the test. We were relieved to find out that our suspicions had been confirmed, but it was also worrying to discover that her hearing levels had dropped further than ever before. As we are still in cold and cough season, we hope that this is just seasonal congestion. We’re now waiting to see if she improves at her next test.

With Robin’s Pendred Syndrome diagnosis, it’s like riding a rollercoaster, not knowing if a bump in the head would mean an increase in hearing loss or if there was any progress. The audiology team has been fantastic, and we have always had support from them. We may sometimes feel worried or scared, but we must remember that Robin is going through this and that she has done so well. This gives us hope for the future.