Hearing, talking, signing – Auditory Neuropathy at 14 months old

Your baby is always your baby, right? No matter how little or grown up they are. Clara is 14 months old today and has noticeably grown so much in the past 4-6 weeks. We sat in Pret in the children’s hospital this morning, before Clara’s latest audiology appointment, and she was contently reading her bookContinue reading “Hearing, talking, signing – Auditory Neuropathy at 14 months old”

Auditory Neuropathy Spectrum Disorder

It’s a weird coincidence I’m writing this on ‘Rare Diseases Day’. But Clara has added another string to her already medically complex bow: Auditory Neuropathy Spectrum Disorder. Auditory Neuropathy Spectrum Disorder is a hearing condition where the inner ear hears sounds normally but has trouble sending them to the brain for processing. It’s rare –Continue reading “Auditory Neuropathy Spectrum Disorder”

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Short Gut, So What? Everyone’s path is different, no-one is the same. We’re sharing our story to give hope that a diagnosis is not a definition of a child. Every child has a chance to change the world. We’re glad you found us. “We had no idea what lay ahead. There was nothing on GoogleContinue reading “Home”

Audiology: another attempt to understand Clara’s hearing

As Clara gets older, she’s starting to show signs of her hearing and speech capabilities. But, science is science, and where there’s technology to assist in diagnosis, it’s always worth trying to find out a little bit more if possible. So, we revisited audiology a few days ago to see if we could learn anythingContinue reading “Audiology: another attempt to understand Clara’s hearing”

First word? Dada… dadadada.

Our last trip back to the hospital to repeat the Auditory Brainstem Response (ABR) test that diagnosed Clara with Auditory Neuropathy Spectrum Disorder did not go to plan. To carry out the test, your child needs to be asleep. That’s not easy with a 9 month old. She sleeps when she sleeps! But I didContinue reading “First word? Dada… dadadada.”