Alice's Ears

A Web Resource and Blog For Parents of Children With Auditory Neuropathy Spectrum Disorder (ANSD)

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  • Oliver…

    May 23, 2012 By Alice's Daddy in an/ad, ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant 2 Comments

    So today is the hottest day of the year. 28 Degrees in South West London I am told. This is all jolly nice and, don’t get me wrong, makes something of a change from the incessant wind and rain of the past two months. On such days it is customary to take lunch on the grass, take a stroll by the river, swim in the pool and generally to celebrate the coming of summer.

    But that would all be too easy.

    Today was Oliver’s first appointment under Audiology / CI programme at St. George’s. A familiar trip, the irony being that Alice and Oliver’s poor Mummy have to be back there at 4pm with Alice as her new ear is playing up….again.

    For those of you not familiar with the process of ABR’s, it essentially consists of playing a variety of different frequency sounds directly into the ear, at different volumes, and then measuring the activity in the brain that is stimulated by these sounds. This is Oliver’s 3rd set of ABRs, and the poor mite is only 1 month old. At least at this age they can sleep through the procedure rather than have to be sedated (well, only if they’re deaf as even I, who can sleep through a thunderstorm, would be woken up by 120db straight into my ear). So this is how the day goes:

    1. Take one, small, one-month-old child.
    2. Make sure he is asleep
    3. Cuddle him to make sure he stays asleep
    4. Place in an air-tight, soundproofed room with no air conditioning on the hottest day of the year.
    5. Stick electrodes to his head and stick wires in his ears.
    6. Cuddle him for two hours while an array of tests are done.
    7. Sweat profusely.
    8. Tell us the results are “what we expected”.

    I am, of course, being flippant. Dhaval the audiologist is so very good with parents and children alike. This is all part of the process and will need to be repeated in six weeks time to make sure there has been no spontaneous improvement (children with the Otoferlin mutation do not mature out of this). In the mean time, Oliver had his moulds taken and will collect his first set of hearing aids in 10 days time. They won’t work of course, but needs must.

    Poor little lamb.

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  • Alice is a poet…

    May 21, 2012 By Alice's Daddy in an/ad, ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant 3 Comments

    I’ll let Alice speak for herself. What a long way she has come.

    My Mum makes disgusting spaghetti

    My Mum makes disgusting spaghetti

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Recent Posts

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Recent Posts

  • Could you be a part of the next hearing loss breakthrough? 
  • The end of an era…..perhaps
  • A Little Bit of History Repeating…
  • One year on….
  • It’s Funny What It Takes…

ANSD / CI Links

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