Wednesday, September 24, 2008

They're filling his head with rubbish!

Tom informed me tonight that old people live in dungarees. We got to the bottom of it after a little probing. Don't worry about the sartorial fate of the older generation in Scotland - it turns out they live in bungalows. Close-ish I think you'd agree.

After a less than happy week or two at his new school, Tom has has a really good day. No half-stifled tears or requests to stay at home - Tom approached the day in Kindy with eagerness and it looks like the day responded in kind. From what we can pick up from his wonderfully fractured description of the day it looks like he had a Good Time.

It would appear that there was a scale model of Arthur's Seat created in the sandpit - partly inspired by his explanation to Dawn, his teacher, that he was wearing his 'Arthur's Seat boots' I presume (there is a side story here about Tom's ascent of said Seat a weekend or two ago which led to the need to purchase boots). It would seem, according to further reports, that a boy named Matthew may or may not have knocked Arthur's Seat over on a number of occasions.

We also learned that drying the pots is Tom's job. He may, over time, learn not to disclose such a level of helpfulness with such eagerness. I hope not - Nik reports he's a particularly thorough cleaner at the moment.

Signs are good...

So here are a few photos - as requested by Hetha. Well, she didn't request a few but it has been a while.

Firstly - the importance of donuts cannot be underestimated. From a birthday trip to Blair Drummond where giraffes and rhinos and stuff were really cool until we found the dodgems and the sweet, life-giving sugary snacks.

And this was on the beach in Gullane - a bright and sunny Scottish day in late summer
And finally, Tom atop the Seat. We headed up there a couple of weekends ago while Nik had a well deserved lie in. I think a few of the sweating, heavy breathing adults who also made the early morning ascent were a little disconcerted to find a 4 year old there before them, munching on a piece of cake.

Tuesday, September 16, 2008

Difficult conversations

Tom is a talkative four year old. I may have mentioned this on occasion; for us it is, after all, a source of enormous comfort and pride given that it wasn’t looking to be a very likely outcome at one time. So Tom’s incessant chatter is the backdrop for our every waking hour; endless repetitive questions, detailed explanations of his needs and expressive dissent are on steady rotation only interrupted, and then reluctantly, by the insertion of food or a toothbrush into his mouth.

You may have picked up a ‘tone’ towards the end of that paragraph. It’s taken a while and a number of posts to get round to it but the admission is long overdue. Sometimes it would be nice if Tom ruminated and reflected for a moment. Silently. Just stopped for a breath occasionally – that would be enough. How can there be so many words in one so young?

Of course, this is a gross exaggeration. There are moments in the car perhaps when he’s gazing slack-jawed out of the window or licking the back seat to get the last of the sugar that fell from a doughnut three weeks ago. And what do we do?

‘Are you OK Tom? What are you doing?’… and it starts all over again.

I could regale you with some of the more hilarious exchanges but they would need so much back story and context that the humour would be lost. You had to be there.

A couple of less funny topics have sprung up though and I would appreciate a bit of advice if any reader wouldn’t mind. I’ve tried bringing the subject up in a couple of human-to-human conversations recently and it has jarred a little to say the least.

So we were innocently looking at wedding photos a week or two back and happened on a photo of my grandfather. I explained who he was and that he’d died. Death isn’t an entirely new concept to him – plants have gone all pale and brown on occasion and he has had similar conversations with a grandparent or two about their ancestors – but his curiosity about the matter had not been sated. And so the interrogation began.

I tried to stick, gently, to straight facts. Largely speaking, and perfectly typically for a four year old apparently, Tom was mostly interested in the practicalities of what dead people ‘do’ and where they are now. At one point I muddied the water with a rather abstract explanation about the benefit of memories and ‘pictures in my head’ of my grandparents. He, of course, wanted to see the pictures.

The subject has been revived on a number of occasions since, the most traumatic of which was a conversation which led to Tom tearfully saying ‘I don’t want to die.’ I wish I could remember how we got to that point; it certainly wasn’t preceded by me saying ‘you’re going to die’ or even ‘everybody dies’ – he made a leap of logic from somewhere far less obvious. Smart kid.

The tears and trauma, for Tom at least, lasted a few seconds and we got onto the safer ground of just how long it might take him to finish his toast. Did I mention that Tom is a slow eater? I think it might be connected to the talking thing.

So death has quietly slid off the conversational agenda over the last few days… to be replaced by meningitis.

Nik and Tom were invited to a photo-op event by the Meningitis Research Foundation. The event, which took place yesterday, involved children who had survived the disease throwing beanbags at a human sized purple bacterium (‘the guy in the meningitis suit’).

To prepare him for this, we showed Tom a recent newsletter from the Foundation, featuring said human-sized bacterium. And the questions began. And they don’t show any sign of ending any time soon. So far we have been called on to give the following answers:
  • meningitis isn’t really that big and doesn’t wear running shoes
  • meningitis is about as big as little Cat Z in The Cat in the Hat Comes Back
  • he had meningitis when he was little
  • it made him very poorly, involved a ride in an ambulance and a stay in hospital
  • it made him poorly by breaking tiny parts of him inside (I really regret starting this one – how do you explain cellular damage to a four year old? What was I thinking?)
  • doctors can see meningitis with special machines – that’s how they could see it when normal people can’t
  • we don’t know how it got into him; it was possibly his ears and probably wasn’t through his bottom
  • doctors made him better with medicine called penicillin (he was keen to know what kind – Tom is something of a medicine connoisseur)
  • it killed the meningitis
  • its not in him any more – its gone. Its just gone (trying to head off explanations about cellular ingestion)
  • he got better

We haven’t got as far as joining this up with his ears and deafness but I don’t doubt that its just over the horizon. He has taken it all in his stride thus far and I hope to God he continues the same way.

It’s just part of his story and brings no painful recollections or repetitive nightmares. That’s just us. He asks – so we tell him as best we can.

So what do you think?

Monday, September 08, 2008

Good news (?)

I've been otherwise engaged, web-wise, over the last week or so updating 2ears2hear - a website that I had a hand in setting up along with another CI dad. The site was set up at the end of last year to raise the profile of the then ongoing appraisal of cochlear implants by NICE (National Institute for Health and Clinical Excellence) here in the UK.

The course of this appraisal has not run smooth and has kept families on tenterhooks, what with their vacillations and oscillations. First there was the excitement of last December when the first appraisal guidance report pointed to bilateral implants for prelingually deafened children, post-meningitic children and children and adults who are blind. It was a big step - but still left hundreds of children and adults out.

Ahead of the second appraisal document's publication in March 2008, someone seemed to get a little anxious about the bill and the prelingually deafened children disappeared from the list. News of the credit crunch had reached the Health Service and belts were being tightened. Lets not worry about the future and think about the bottom line now...

So when the Final Appraisal Determination (where did they get these names from?) was published last week, I must admit to not feeling too optimistic about its contents but...

Well, you take a read.

There's another week to go before final publication and this rollercoaster may have another twist, sheer plunge or two to come but it would seem that, barring appeals from the formal consultees, the proposals are beyond what could ever have been expected.

All children with severe to profound deafness to get bilateral implants along with all blind adults and those with heavy reliance on hearing due to other disabilities... Note - there's no need to make special mention of the post-meningitic; the criteria are so broad. Now that is fabulous news. It brings with it a number of concerns - of which more in later posts - but firstly, on top of that great news, there is this statement:
Sequential bilateral cochlear implantation is not recommended as an option for people with severe to profound deafness. People who had a unilateral implant before publication of this guidance, and who fall into one of the categories described in 1.2, should have the option of an additional contralateral implant only if this is considered to provide sufficient benefit by the responsible clinician after an informed discussion with the individual person and their carers.
Now that sounds like an opportunity for more ambiguity and a continuation of the postcode lottery for a significant number of individuals - those who had the misfortune to get deaf at the wrong time.

The reason is all related to the QALYs and the cost of the second implant. Two ops cost enough more than one to tip the cost-effectiveness balance and, given the approximate nature of the calculations (I'm still no nearer understanding how you actually assign numbers to quality of life with anything approaching certainty), it pushes the cost of simultaneous implantation beyond the acceptable boundary.

Anyway, my fellow CI dad Dominic has put it all far more eloquently on - he's the one behind the words, I just do the grunt work with the website. If you get a chance, there are a few interesting case studies on there too including one that gives a slightly different perspective.