So the cold seems to be on the wane, thank heavens. We had Alice’s ears checked this week by the GP and again today by David Selvadurai and they seem clear, so barring a disaster, surgery will go ahead as planned next Friday!

Last night we went to an evening organised by Cochlear. It was basically an introduction to the Nucleus Freedom system, but also covered new developments and had a useful Q&A session at the end. We got to meet people with CI’s, got to meet some of the Cochlear team and, most importantly, some other parents in the same boat as us, including some whose daughter also has ANSD – it’s a small world.

As every day passes I become more and more convinced we are doing the right thing. I still find it hard to look at Alice knowing what will happen to her next week, but hopefully in time she will understand and appreciate the decision and forgive us for the scar.

We also went to St. George’s again this morning for what will hopefully be the last pre-op appointment. Audiology had been planned, but we decided it wasn’t worth it as we didn’t want to force this issue with Alice wearing her molds. She is now doing much better with the BTE pieces and happily wears them most of the time again (with a little help from the boob-tape). Everyone seems pleased with this progress and I just hope that once the CI is in, she will accept it readily – only time will tell.

We also had to choose the colour of the BTE part of the device. My default position was ‘girly pink’, but we were advised that a colour that matches her hair would be best. Flesh coloured it is then – sorry Alice, I know it is dull. Alice, off her own bat, decided to put on some of the BTE devices and proudly marched around the room with them on. 

Most importantly, David introduced us to the little girl who he had operated on seven days ago. She had just had simultaneous bilaterals fitted. We were sat with her in the waiting room beforehand and, truth be known, I had no idea she had CIs implanted, let alone so recently. Little Jocelyn was remarkable for a little one who had had the surgery only a week ago. Most astonishing was that the scars were barely visible, the wounds had healed and there was no swelling at all. You would never know if you weren’t told.

I can only hope Alice heals as well as Jocelyn was a real inspiration to us both.

Seven days and counting….

So we have the surgery date confirmed, subject to Alice not contracting any nasties over the next three weeks. We sat down with David Selvadurai yesterday for a good hour discussing thoughts on the way forward.

David has suggested that Alice is a good candidate for bilateral implantation, but his thoughts are that, on the off chance that her ANSD does improve over the next 9-12 months, that we do these sequentially rather than simultaneously to preserve the one good ear for as long as possible.

That said there are pros to having them both done at the same time.

So the choice is really in our hands. Given the new NICE guidelines, as Alice has been approved funding for one CI, they (so far as I am aware) will have to fund a second and, if truth be known, would probably rather they be done simultaneously as there is a cost benefit to this.

However, there is the thought of the surgery being five hours rather than two and a half with the complications this might bring, together with the complexities of settling Alice with two CIs when, as mentioned in previous posts, she has become terrified of her ears being played with and rarely wears her aids these days. David tried to check in Alice’s ears yesterday and witnessed how sensitive she has become at first hand – she was having none of it!

I don’t think there is a right or wrong answer to this. Mind you, it is still us who have to make the decision.

It’s not like having surgery for a life threatening illness – ‘do this or you’ll die’. Having a CI at all is a choice complicated by the further choice of one or two? Simultaneously or sequentially?

I’m buggered if I know the answer – what would you do?