Thursday, October 12, 2006

A Very Modern Arrangement

The latest chapter of Tom's cyborg transformation story proved to have the requisite touching moments at its conclusion. We had to get through the farce, misunderstandings and byzantine regulations that now govern his care first of course but, ultimately, the people who care did what they do and Tom took it all in his stride.

Tom's treatment is now quite the public-private partnership with a neat line being drawn between what is our responsibility (all things left) and what belongs to the Crown (to the right). One of the manifestations of this is that when the processor that we paid for a couple of weeks ago doesn't show up on the expected day we go without. The Implant team's hands are tied; they can't lend us any equipment for the left ear so we must wait until our parcel arrives tomorrow.

Its a learning process for us all; we are Nottingham's first private implant and they are bending over backwards to get procedures in place and provide us with the care we have asked for and are now paying for (did I mention there are other children with bilaterals who aren't? Oh, I probably did. Ho hum) within the rules that the Trust lay down. The audiologists are on their time; the room and equipment must be hired - an arrangement which, luckily, includes the all-important cars, dancing monkey and elephant.

All of this matters not a jot to Tom of course. The change in audiologist unsettled his deeply conservative outlook for a brief time - no Kim or Mark? What about the micromachines? - but not for long. From the moment the first sound-intimating frequency passed down that wire into Tom's cochlea and we saw him react, we knew the whole rigmarole was worth it. A huge grin broke across his face as he cupped his hand to his ear, looked to us and then looked for the monkey with the crashing symbols. I, in turn, look to Nicky and see a broad smile with eyes welling up and I know she can see the same.

The rest of the session passes. Tom loves mapping and that is in no small part to the skill of the audiologists at Nottingham and their huge stash of cars and garages. This one went without a hitch too - apart from coming away without a processor that is. Now though is not the time to make a fuss; with his existing implant performing so well we can wait another day.

This is but the start of our very NuLabour public-private partnership; it has yet to be worked out whether sessions will be divided into 'the NHS bit' and the 'private bit' or whether there'll be even more appointments. We still have issues of insurance to deal with; spare parts, upgrades and all the other 'what-ifs' that we no longer assume won't happen to us. But today it can wait; today has been another good, good day.

Tom and I had our usual evening routine although he's doing his best to spin it out. Every evening we have bathtime. I'm so grateful that he loves it - its my daily reminder of his deafness and he sees me through this vulnerable time with screams of joy and cups of water over my head.

As I keep saying; he's going to be just fine.

4 comments:

Jennifer said...

Hooray for a wonderful mapping session...I hope you get the processor without any more hitches!!! I'm so glad he can hear!! GREAT news!!!

Gypsy Pete said...

Great news, sort out the right and left later. Stereo is best.
Good luck to Jennifer on your switch on.

DL said...

Nanny/Diamond Lil,
Every penny is worth hearing that little man saying NANNY, PAPPA when we go to visit, and tuddle tuddle. Also when we hear him say Nanny's car, Pappa,s car which he recognises just by the colour and the model!! He is a little smasher!! We love him to bits as we love you all.

Mom to Toes said...

I love reading about Tom! He sounds like such an amazing boy.

Thrilled to hear the mappings are going well!

Sorry to hear that the left vs right administrative issues continue.