Interim audiology visit

Robin had a bad cough and cold early in the year, and we noticed that her hearing levels seemed to drop. Matt and I kept saying to each other, “She seems a bit more deaf,” and I realised we were saying that quite a lot as the weeks passed.

It was really hard to describe what we were experiencing, but we’d notice at times when she didn’t have her hearing aids on – like in the bath or at bedtime – we could walk into her room talking to her and she wouldn’t know we were there until we tapped her on the shoulder. That was definitely a new experience for us, because although we do speak more loudly to her when she’s without her aids, she can generally hear us or at least know we’re there.

It was even noticeable when she had her hearing aids on – she would say, “Mommy, I can’t hear you,” so we knew that something was different. It was a worrying time because with Robin’s Pendred syndrome, we’ve been told that any reduction in hearing levels can be progressive and permanent, so we’re constantly watching out for any changes. She’s also got to be careful about banging her head, and during this time when we were noticing her hearing levels dropping, she had done just that after falling off a kitchen chair.

We decided to take her to audiology for a check-up as her next hearing test was too far away for us to wait. And with us feeling worried and upset at the changes in communication, we can only imagine how frustrated and sad it made Robin.

I’m sure it had an effect on her, but she’s so bright and positive that unless she says she can’t hear me, you wouldn’t know that she’s struggling. One of the things that makes me so sad is when I say something to Robin and she smiles and nods – I know she hasn’t heard me, but she’s just trying to make me feel better about our conversation. I know she’ll have to do that a lot in her life, and I wish she didn’t have to.

At audiology, two lovely doctors initially conducted an inner ear pressure test to see if there was congestion. Having seen nothing visibly blocking the ear, the test confirmed that there was some congestion in the inner ear. They then did a play audiometry test to check Robin’s hearing at different volumes and frequencies.

The result confirmed that her hearing levels had dropped. It was a relief to know that what we thought we’d noticed was real, but also a worry to learn that her levels had gone down further than they ever have been. However, as we’re still in the cough and cold season, the hope is that it’s just seasonal congestion, and we’re waiting to see if her hearing levels improve at her next hearing test.

It’s a roller coaster with Robin’s diagnosis of Pendred syndrome, wondering if a bump on the head will mean an increase in her hearing loss, or watching to see if anything is progressing. But the audiology team is fantastic, and the support we’ve always received has really helped us all to navigate the journey. As worried or scared as we may feel sometimes, we have to remember that Robin is living this – and she copes so well that it gives us great hope for the future.

 

Update: We're pleased to say that Robin’s hearing levels have come back up since her last hearing test.