Author Archives: Claire aka Mummy

The best Christmas Present ever ……

January 7, 2013 By in an/ad, ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant, hearing loss Leave a comment

Whilst the world enjoyed the joyful celebration that is Christmas, in the Campbell household, Christmas was particularly special this year.

2012 has been a very mixed year, in some ways the most amazing with the safe arrival of Oliver, but then his deafness has also continued the hard work of the last couple of years. But without a doubt, one of the highlights of the year, was Alice’s final session at AV UK. After 3.5 years on the course, Alice graduated with above age appropriate language and we are cast adrift into the world. Alice just thought it was an excuse to eat cake and tell Rosie about her world, we were secretly shedding a tear of pride.

When Rosie told Alice she wasn’t coming back because she had learned to talk and listen so well, Alice just answered,”I know.………….”

We have created a self-assured little girl who is more than capable of speaking for herself. Leaving AV is really hard for parents. They have been the most incredible support and holder of our hands. I always tell people that the second call we made after family was to AV when Oliver was diagnosed. We needed them to remind us that it was all going to be ok. When problems have arisen, our concerns and emails are always answered in a calm and reassuring manner. We put our faith in them when they said they could change Alice’s fortune and to trust them – we did.

I would be more scared if I didn’t know we’d be back there in a month’s time for Oliver. By the time he graduates, we will be experts.

But in the meantime, Merry Christmas and thank you Santa for the greatest gift, Alice’s future.

20130107-210807.jpg

Our Pom!

Going Up North….

July 24, 2012 By in ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant 1 Comment

When Ollie was diagnosed, after the initial shock, we emailed everyone that we thought we’d need in the journey, therapists, surgeons and audiologists were immediately put on notice, that their help would be demanded.  We then calmed down and took time to look at our gorgeous little boy and smile a bit.  But, in the back of our mind has always been the need to somehow give something back.  For every family like us, who are sure where they are going, is a family like us 4 years ago, that is frightened and confused and needs a friend.  We are determined to give something back and help anyone that doesn’t know what to do.  Chris and I answer every email, every comment and will always do, so as everyone needs a hand in the crazy world of ANSD.

Each child with ANSD is different and beautiful, but more importantly our children have a multitude of causes and outcomes.  We’ve found ourselves in the genetic, no possibility of getting better, CI early camp, but friends have found themselves in other parts of the umbrella (maturation, jaundice, no nerves…..).  We’re all part of the same spectrum but clearly our journeys and outcomes will vary.  Whilst this is all very interesting, for parents, particularly at first diagnosis, this means that the clinician’s plan can seem vague or parents are asked to wait and see for ages.  There are good reasons for this, but with limited information it is incredibly frustrating.

Help is at hand though!  Clever people globally are all working on improving the understanding of ANSD and more specifically wonderful, clever and practical people (I met two of these amazing women today) are working on gaining more useful information to aid parents and clinicians in choosing a pathway for their particular ANSD.

What does all of this mean?  Today Ollie had CAEPs done.  These are shown to give more information to clinicians than an ABR can with ANSD.  From our perspective it was no more intrusive than an ABR, although the smallest Campbell decided that he didn’t particularly want to play,  but a smile from such a cute young man instantly melts the heart.

We are waiting for the team to analyse the results but when Alice had her CAEPs done, it gave us confidence that a CI might work.  For Ollie this wasn’t our reason for the test, but frankly I’d go a lot further than Manchester (particularly as we get a lovely guest suite and gourmet dining at Chez Delaney) if it meant that in time, someone will benefit from this research.

We have made some new friends in Francesca and Kai and we hope to be involved in further studies.  As a call to arms to our many readers, if they ask, would you?