Monthly Archives: February 2011

A brief request…

February 14, 2011 By in auditory neuropathy spectrum disorder Leave a comment

When we started this blog more than two years ago now (where’s my life gone?) we did so for entirely noble reasons. We hoped to help, in some small way, people in the same boat as us – people struggling with wading through the minefield of information and misinformation.

We have had nothing but positive feedback on the way and if we can have helped just one family in their journey, then I will rest easy. The site has taken us a long time to put together. As we researched Alice’s problem for our own ends, we tried to put it into our own words to help others out there. Where we have not used our own words, hopefully we have credited others correctly.

That said, the internet is an odd and crazy place. Whilst I would not wish to discourage anyone from spreading news and information about ANSD and CIs, can I just request that when referencing or copying formats and information from our blog that they are credited accordingly (please see copyright notice at the bottom of the page)?

Thanks and sorry for the grump

No. 2

February 9, 2011 By in Cochlear Implant, hearing loss Leave a comment

Gulp.

We are now underway. Alice went in to St. George’s last Friday for the first part of her assessment for her left-side implant. We were pleasantly surprised to find out that the assessment process – for us at least – will be made up of three audiological assessments and that’s it! Friday was the first.

The downside – Alice had to have another ear-mould taken so she can wear a high-powered aid in her left ear for two weeks before her final assessment in a few weeks time. Essentially, the PCT won’t fund ear No. 2 if she hasn’t tried the aid first. Claire and I are quite anti this as some of you may remember from Alice’s first assessment. Because her hearing loss is so bad / unusual, the aids were cranked up pretty high last time. It really freaked Alice out and she refused to wear the aid (what’s the point of amplifying distortion?). In the weeks leading up to her getting her implant, we were terrified she wouldn’t wear the implant at all.

Sadly, we must try again, only with an even more powerful aid this time as her hearing loss seems even worse than before – nothing up to 110db. Oh well, it’s only for two weeks.

The scary thing is this means – technically – Alice could find out her date for surgery some time in the next month – end of April / early May seems reasonable………Gulp

On the positive side, we seem to be making some (slow) progress with Surrey CC on Alices statement. We went in last Monday to argue our corner and whilst they didn’t immediately buckle under my rantings and quotes from case -law, we have agreed a way forward. Worst case scenario we still have to go to tribunal, but I think we might be making some progress. It’s one of the plus-sides to Surrey not having provided Alice with any SLT for two years now (the post has been vacant for most of that time) – I believe the term is ‘not a leg to stand on’.

Here’s hoping

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