Can we just get on with it?

We’re at a horrible time in Oliver’s life as we feel like we’re in Limbo.

Things we know –

  •                 Oliver hears bugger all, all the testing is pointing at a fairly stable profound loss (c. 105dB);
  •                 Given it’s genetic and the outcome we have seen with Alice, he will benefit from an implant and it’s the key to giving him access to spoken language;
  •                 Cochlear implants have the best outcomes the earlier they are done;
  •                 The surgery for bilateral implants takes time, especially on small heads;
  •                 Surgery is not without risks, especially on the young;

So its never an easy decision to put your small one through surgery, but in our heart of hearts we know it’s the right one.  So we want to get on with it, but I guess secretly wishing we don’t have to.  Here in lies the problem, we are stuck in due process, in testing and report writing and meetings.  All we want is for our little boy to hear the world and we are stuck.  We want to get on with AVT, with introducing him to noise and instead we are stuck.

So we wait…….for how long, who knows?

At least we had the message back from the hospital this morning that Oliver has been referred for his CT and MRI scans. Shame he had these last October…..

It had to happen sooner or later…

As Alice’s Mummy has pointed out: “at least it happened on your watch”.

Alice, amongst many other things, is an avid rugby fan. By that, I mean she has been dragged to rugby grounds around the country to watch Rugby at her father’s whim and enjoys the sweets enough to make it worth her while. She has been known to shout “har-le-quins” on occassion too. We have been visiting the Twickenham Stoop to watch Quins for over a decade and Alice, since she was just six weeks old. Our friends who sit around us have grown up with Alice’s Ears and all know about the journey she has been on. It is a wonderful, family club.

On Saturday we trecked out along the usual beaten path, from the Sussex Pub to the Stoop. Alice happy and skipping along the way on a cold, dank, Saturday afternoon. She took a minor tumble en-route, but nothing that wasn’t solved by a brush down and a big hug. Or so we thought.

Alice has always been fantastic at reporting issues with her CIs. When they are on, when they are off, when there are technical problems and, more recently, when there is a problem with a map. It makes our lives so much easier and is testament to how well she gets on with them.

Half way through the first-half of the game on Saturday, Alice reached under her hat and turned to me saying “Daddy, my ear’s fallen off”. Not to worry I thought, it will be hanging in your clothes somewhere and we will find it straight away. Only we didn’t…

It was not in her clothes (despite the strip-searches in near-Zero temperatures) it was not on the floor, it was not in a pocket it was nowhere to be seen. Panic ensued. We retraced our steps over the 1km back to the car – nothing. We were sitting in a rugby ground with 13,000 merry rugby supporters who wouldn’t even know what a speech-processor was if they found it. Help.

And yet again we are reminded of the fragility of Alice’s hearing. We were surprised that she hadn’t reported it missing sooner as she relies on both her ears to hear as well as she does. I guess the fall must have confused her more than we thought.

I can only thank the kind gentleman who found it on the path leading to the ground. The Steward who handed it to the club and the club for phoning me within half-an-hour of the game finishing to reunite us with Alice’s ear. Harlequins FC should be rightly proud of how the helped us.

But here is the thing, it is easy to get complacent when your child is doing so well. To forget that Alice’s world is dependent on microchips and batteries. If they break, or disappear (who hasn’t broken or lost a phone for example?) Alice’s world and ours turns upside down. It is a technology Alice and we have come to rely on but it is one that we cannot take for granted – not even for a moment.

I can’t wait until Oliver has his fitted and we have four processors to look after. Dear God.


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