Tag Archives: ANSD

“You Make Your Own Luck…”

April 8, 2013 By in ANSD, auditory neuropathy spectrum disorder, Cochlear Implant, hearing loss Tags: , , 1 Comment

I’ve lost count of how many times I’ve heard that in my life. Be it in business or in life in general, people constantly remind me that you can somehow change the course of events by simply trying harder, working smarter, being nicer or whatever it may be.

The fact of the matter is you don’t. It wouldn’t be luck would it? It would be reward. And herein lies the rub. Some people have good luck and others have bad luck. Mostly, we have a bit of both and, over the course of time, it evens out.

Right now it seems the Campbell family are stuck in one of the down times. One of those periods where things just don’t seem to go our way. At least that’s how it feels from the inside. I’m sorry to be all ‘glass-is-half-empty’ with you, but there are days when things get on top of you, get too much and you just need to have a good moan.

As you know, dear little Ollie was due to have his bilateral CI surgery on Friday. Not to be out-done, Alice is due to have her replacement surgery on her left side the week after. The astute amongst you will notice the subtle use of the word ‘was‘.

Ollie is a well boy. Rarely sick, and doesn’t seem to suffer the coughs and colds which take down the rest of the family. I can’t remember him being poorly in the last six months. How come, therefore, seven days before his surgery that he has waited 12 months for (remember we were promised it would be done before his first birthday which is next week) he goes down with the cold to end all colds? There is a constant stream of something green and unholy from his nose and he is not a happy boy.

Alice was at George’s this morning for her pre-op check-up and her Mummy asked the Registrar to check Ollie’s ears; all clear. Phew. Or so we thought. Three conversations and two telephone calls later, Ollie’s surgery is off. You just can’t take a risk with these things and the hidden inflammation from a cold mean surgery is too risky. The right call no doubt but you can’t imagine how frustrated and upset we all are. Our poor little boy will have to wait a couple more months (most likely) before he can hear the world and hear Mummy and Daddy tell him we love him.

You start to wonder when things will swing our way.

So the next time someone tells you ‘you make your own luck’, you have my permission to punch them on the nose.

Both Ends Of The Spectrum….

February 28, 2013 By in an/ad, ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant, hearing loss Tags: , , Leave a comment

There are some days when it all goes well. There are some when it all goes badly. I can pretty much live with both of these; my emotions can handle extremes pretty well.

What I really struggle with is when you have a day which is both phenomenal – and I mean mind-bendingly, awe-inspiringly brilliant – at the same time as being dreadful in a way you had never even considered.

I went to Alice’s Parents’ evening this evening. I’ve said it before on here – and there are parents of children out there like Alice who will know what I mean – but to hear her teachers saying how well she is doing – not well as a deaf child, but well as a thriving, cheeky, bright and intelligent child – just about finished me off. I know they read this blog and I hope they will forgive my bleary eyes. It was a wonderful thing to hear. Proof that all Alice’s battles and hard work had been worth it. Vindication, dare I say it, of our decision.

Alice is a star. She is remarkable. She has come so far and we are so proud of her. We couldn’t be happier.

But……..and there had to be a ‘But’……

Alice’s ‘new ear’: the implant she had fitted two years ago, has failed. Cochlear have had a well reported issue with a bad batch of N5 implants that let moisture in and then failed. It usually happens between six and 12 months so we thought we were clear……sadly not. Alice went along to George’s today to find out why her processor had been flicking on and off and why it wouldn’t connect at all in the past day. Now we know. Bugger.

So this means a new implant, a new surgery and more running to stand still. Bless our little girl.

Imagine just for one moment that someone switched one of your ears off. Imagine how difficult and disruptive that would be. Imagine now that your hearing wouldn’t be reeturned to the way you knew it for at least three months: 6 weeks until surgery, 4 weeks recovery before switch-on and then several more weeks adjustment as the brain re-learns. I can’t imagine how it must be for our littler Alice. As ever, when told she was having another surgery and a new ‘magic ear’, Alice just shrugged and asked if she could have a biscuit……

Surgery date will be confirmed tomorrow we are told. They couldn’t actually do her the same day as Oliver………could they? It has been floated out there as an option…..

Whatever the outcome, she is still our perfect little fighter. We are so proud of her and her achievements yet reminded, so cruely, about the fragility of her hearing. Would that she took some words of her own advice:

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