Monthly Archives: January 2013

Sore calf muscles…

January 14, 2013 By in auditory neuropathy spectrum disorder Leave a comment

Those of you who follow our blog will be aware of the esteem in which we hold Auditory Verbal UK, without whose help, Alice wouldn’t be where she is today and without whom Oliver’s future in the hearing world would not be so bright.

You will also know how, as a family, we do whatever we can to help them to help others.

Over the past three years, Alice’s Mummy and I have taken part in Triathalons and have rowed the Thames twice to raise money for our friends at AV. In doing so, we have raised c. £12,000 and we know what a difference this makes to them.

I am not built for running. Any rower will tell you that the muscles are all in the wrong places and I’m just too damn heavy. Hence the prospect of a half – marathon around Silverstone race track fills me with horror. Particularly as it is in only seven weeks’ time. Nonetheless, I have been fighting the frost and trudging the pavements of Surrey in training. My calves are agony and I have blisters on my blisters.

If you have a spare moment, do please visit my JustGiving page and, if you are able, give whatever you can to support me in my run and to help such a wonderful organisation that really does change people’s lives.

What Can My Baby Hear?

January 7, 2013 By in ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant, hearing loss 4 Comments

It should be such a simple question, but actually, for our ANSD babies, it’s the hardest to answer.

In standard hearing loss, you do an ABR or test them in a hearing booth. For our babies this just doesn’t cut it. Alice tested anywhere between a moderate and a profound loss within the same session and within minutes. Her hearing was consistent in that it was completely inconsistent. Even when we went for Ear No2, she was still able to completely confound us and her audiologists. Interestingly, when we ask what she hears, its anything between nothing and her new favourite, “Ghosties……..” So none the wiser. But none of that hearing was useful. She couldn’t make enough sense of it to make out speech.

But ANSD kiddies are all different; some hear nothing useful, some have windows of useful hearing and some hear well with amplification or technology that improves noise to sound ratios. Herein lies madness and it’s frustrating for parents, who want a straight answer to what should be a simple question and for professionals as they can’t give the straightforward answer.

We don’t think Ollie hears much; in the next month or so we’re going to find out where he tests in terms of VRA but last week was more exciting and much more useful.

Francesca from Manchester University has devised a test to try and capture the useful hearing in an ANSD baby. An amazing area of research and one that we are delighted to support. We have discovered that Oliver can hear, he can distinguish the different parts of speech (on a simple level consonants and vowels) and the signal can get through. The issue is that it took very loud sounds to do it – for Oliver, it was 105db, but it was still possible. For other ANSD children, the answers will be very different. It was fantastic and amazing and it will be an extremely useful piece of the puzzle for audiologists.