• Progress…..of sorts

    April 11, 2011 By in auditory neuropathy spectrum disorder Leave a comment

    So when we started this year we had two goals: Sort out Alice’s statement and sort out CI #2.

    On the statement, it seems we have somewhat hit the buffers. I still have high hopes that we will reach agreement with the County Council on the content of Alice’s statement, but we now have a tribunal date where we will argue our case if necessary. The hope is that we negotiate a happy medium without the misery of having to attend the tribunal (it seems both we and the CC want this – they are time consuming and expensive), but in the mean time we must sit and wait.

    The trouble being that for every week that ticks by whilst the bureaucracy drags its heals, it is another week without certainty and another week where we must pay for some of the additional help that Alice needs. To give you an example, the local council has had no SaLT in post for the two years Alice has been implanted – hence all her additional help on this front has had to be provided by and through us.

    I’m not holding my breath, but hopefully we will get there – it is the snail’s pace that frustrates us so much.

    On CI #2, Alice has now completed her assessment. Alice’s audiology was, as expected, all over the place in her un-implanted ear. Even with the powerful hearing aid Alice still wasn’t getting much help. Another piece of technology resigned to the kitchen drawer.

    When we first started the assessment we were told April was a sensible date to aim for for the surgery. April became May….became June….became July….has now become ‘possibly the Autumn’.

    Rather by chance than good planning, it seemed we might end up with the Surgery during Alice’s summer break. This would allow her time to recover and start adjusting without the distraction of school – Alice enters Reception (proper school) this Autumn, so it would be wonderful if she were some way down the road by then. It is still possible she may get a slot during July – I suspect if she doesn’t, we may put it off until next summer rather than pile too much on her little plate in one go. We have a meeting with the Dr. David, Alice’s Surgeon, on Wednesday when, hopefully, we will find out.

    Again, here’s hoping.

    Always hoping……………..

  • “Little Ear”

    March 7, 2011 By in an/ad, ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant, hearing loss 5 Comments

    So Alice has a new ‘Little Ear’. Sadly this is nothing more exciting than a new, high-powered hearing aid she will have to wear as part of her assessment for her ‘Proper Ear’ number 2.

    Remarkably, she seemed to be hearing something through it when it was first fitted last week, but since then nothing. Inevitable really. It still seems that Alice’s ANSD means her hearing deteriorates the more her ears are stimulated. Her implanted ear clearly now bypasses this problem, but it does add credence to Tony Sirimanna’s suggestion that she might have a problem with depletion of the neurotransmitter at the synaptic junction to the auditory nerve (I think I know what that all means).

    Anyhow, for the first week she wore it with some pride and showed it off to everyone at school. Now, as she is getting no benefit, she has developed an annoying habit of hiding it around the house so we can’t find it and put it back on. We knew this would happen, but we are still trying our best.

    Surgery could be as soon as early June if all goes well, which I think is a good thing. It would give her the School summer holidays to begin her adjustment and to get used to having two ears at last. I still don’t like to think about it. Surgery is never pleasant, least of all on one so young and I don’t think Alice is yet old enough to understand what is in store for her.

    On the positive side, her speech continues to improve every day. She has become something of a singer, although I do think we need to teach her some new songs as all she seems to do is repeatedly recite the ones she learnt for her Christmas Nativity at School. We now have a CD of them in the car and it does feel a little odd driving along listening to songs about how “Jesus was born in a stable….” in March.

    Mind you, given her less-than-perfect hearing, Alice seems convinced that “Jesus was born on a table”. It makes me smile anyway.