Tag Archives: Cochlear Implant

Ready, Steady, Gooooooooooo

November 4, 2013 By in ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant, deafness, hearing loss Tags: , 1 Comment

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)

 

 

Fragility…

September 30, 2013 By in ANSD, auditory neuropathy spectrum disorder, Cochlear Implant, deafness, hearing loss Tags: , 2 Comments

All children are fragile, whether it’s physically or emotionally.  All parents want to make sure that their little ones are safe and happy at all times.  Everything we do, we do because it’s the best that we can for them.

All three of our children are fragile in their own way, Joseph is a sensitive soul and Alice and Ollie have thousands of pounds of sensitive electrical equipment embedded in their skulls.  We as parents try and balance normality with protection.  Today, Alice and Joseph went happily into school for another day of learning and wonder.  I smiled as I waved them both goodbye.  Half an hour later, the difference between a normal child and a CI child became clear, Alice’s processor has a fault.  She instantly goes from being a “normal” child, to one with a significant hearing impairment.  Her confidence slips and I turn on the rescue protocols.

The spare that lies under a layer of thick dust 99% of the time has to go and get reprogrammed, the school nurse and Alice’s amazing LSA do their best to reassure and repair, but ultimately it’s a replacement job.  We are extremely fortunate that we have a spare.  Due to a high level of losses, our CI programme is out of spares, so without the dusty old processor, Alice would have lost her favourite ear for days…. School would have been a nightmare.  It never ceases to amaze me how much on a knife edge we live.

If any CI company is reading this, our real list of wants as parents is as follows ….

  1. The most robust processor you can make (water, sand and falling over are all part of a normal life as a child)
  2. GPS and other localisation technology.  Ollie likes to crawl into small spaces and sometimes we find processors under drum kits, beds and other corners.  The park, theme parks, the beach and public transport are our idea of hell, 3 children, 4 processors, tickets, keys, phones it’s a lot to think about
  3. Spares – Cochlear Europe is 10 mins drive from Alice’s school, the MAPs can be carried on a USB and Alice could have been up and running in 10 mins.  Remote mapping helps those of us with spares.  But not everyone can afford to have £6k lying on a shelf for an emergency.

And as parents we need to make better promises, we need to take care of our children’s ears and processors and not leave our CI teams short of processors for the unusual occasion when something does go wrong.