Ready, Steady, Gooooooooooo

So it’s now just shy of seven months since Ollie was implanted; six since he was switched on. In that time we have worked daily with him to give him the best access to spoken language that we can. Ollie attends AVuk every fortnight and, despite our experience with Alice, we are still learning all the time. In part, this is because Ollie is that bit younger than Alice was at the same stage; he’s still a bit young for structured AV-type games (as Ollie’s AVTs have found to their cost!). Frustrating doesn’t begin to cover it, but his progress makes it all worth it.

At six months post switch-on, we reckon Ollie has around 15 words (expressively) and about twice that receptively. Ollie can say: Look, Hot, More, Ali, Yum Yum, Brmm Brmm, Choo Choo, Bye Bye, Quack, Open, Pop, Up Up Up, Down, Uh-Oh…they are all consistent but if you weren’t looking for them, you’d probably miss them.

We couldn’t be more thrilled with his process. You always hope for the best and, as parents, we know we will never miss the opportunity to give him the best possible access to spoken language. Miss the opportunity and you might never get it again.

For now, I hope you enjoy Ollie playing “Ready, Steady, Go…..” (an old AV favorite)



One Thousand, Eight Hundred and Sixty One Days….

Since the 18th August 2008. A day I will never forget. The day we found out the our beautiful Alice was deaf. That is how long it has taken to get our answer…..

Today it came.

I have to say I am shell-shocked; not because it changes anything or anyone; not because we now know something we hadn’t already suspected, but because we finally have our answer; we finally know which little pieces of an infinitesimal code were out by a fraction and why our babies were born with wonky ears.

I am relieved, sad, happy, depressed, angry, elated, confused and exhausted all in one emotion.

Alice…Ollie….everyone, meet Otoferlin (OTOF) Exon 21 Mutation C.2348DEL>p.Gly783ALASFSX17

I told you so.

On the plus side, we also have a suspected additional mutation at c.1469c>Gp.Pro491Arg which is newly discovered and thus we are now part of some scientific study. How terribly exciting. Also, as they are recessive genes, it is both of our fault….

I’m sorry babies.


I am now off to cry.

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