Thursday, October 25, 2007

Running Commentary

Things aren't anywhere near as gloomy as that last post really... I shouldn't have left it so long, sitting there atop this blog. What will people think they've wandered into?

For the vast majority of the time, Tom's story is one of normal development - astounding stuff considering the 'wee setback'. He thinks everything is so great that you can't help but find yourself agreeing and then, of course, there's the running commentary...

It was around this time last year, maybe a little earlier, that Tom's Granny made a typically apposite comment about her charming loquacious grandson. On returning from a car trip with Tom, she said it was 'just like driving with my mother'. I'm not sure she meant it entirely kindly but, lets be honest, it ain't so different.

'Oh look, a van'
'And there's another one'
'Its a roundabout. The traffic lights are gone now'
'Look there's a digger'
'That's where Chris's party was'
'That was a lovely shoe cake'
'The traffic lights are red. That means we have to stop.'
'That's a Corsa. Just like Granny's but Granny's Corsa is blue'.
'Oh look, another van'
'There's one two three vans'

This habit shows no sign of abating and has grown into obsessive monologues and the dexterous steering of conversation round to subjects of interest. There are also blunt changes of subject when the topic wanders away from key matters.

Not a day goes by without the following topics being covered:
'A short precis of the houses and cars I can see from the dining table' - length varies according to how interesting dinner is.
'Where Ruddington stops and Clifton begins'
'Going to Grandpa's house and Grandpa's cars' - this is a lengthy one because of the number of cars at Grandpa's and the journey's endless possibilities involving aeroplanes, cars and, possibly, boats.
'Chocolate money' - a nutritious foodstuff that has caught Tom's imagination and would almost certainly, according to him, make a perfect breakfast.

We're getting our money's worth out of these implants.

So that mostly covers what's been going on chez Tom over the past couple of weeks. There were a few days following the physio's visit when Tom morphed into a fragile convalescent but reality crept back into view. By lucky coincidence, a week or so after the visit, I met the parents of Mike and that put many things into perspective.

This is Mike - since this was written he has graduated with first class honours in Design and Technology for Industry and has now started his first job. Mike was the first child in the UK implanted - 1990 if my calculations are correct. This was a time before the NHS recognised they might be useful and certainly didn't pay for them. Simply put, Mike and his family have hero status as far as we're concerned.

When you're in the CI club you just need to share and devour each other's experience. We've gleaned so much from other families and, I guess, passed quite a bit on ourselves but nothing compared to what the Batts have to share. All the imponderables about Tom's future that float to the surface in the dead of night - this family have lived through them, dealt with them and moved on. No two children are the same... I know all that... but the many questions about the experience of 'being the kid with the implant'; the business of living and growing with this thing were what I wanted to ask.

And the Batts indulged me. They painted the picture of (an approximately) the normal, 'whole' childhood, adolescence and young adult life that we now know is coming. Riding a bike, driving a car, drunken teenagers and girlfriends; its all there as it should be. I came away grateful and reassured. I relayed the conversation as well as I could to Nik who, as is her way on occasion, found bits to worry about. Luckily she now has a blog of her own to share some of these things with all of you. She's at - and she's great so go read!

So we're back in a better place again. Thought I'd better let you know.

Thursday, October 11, 2007

National Healthcare (abridged)

There has been a soupcon of emotion around these parts over the last day or so, much of it stemming from an appointment we arranged for Tom yesterday. In the context of the appointment we didn't find out anything that we didn't suspect already but the act has been the equivalent of merrily flicking the scabs off a number of old emotional scars that Nik and I like to keep to hand.

The appointment was with a children's physiotherapist who specialises in assisting children who have suffered brain injury.

There's scab number one right there.

Ever since the darkest days were pushed behind us and we were no longer waking to find that Tom was still in a coma, the small matter of the lesions that revealed themselves on Tom's MRI ('felt to be secondary to meningitic end arteriolitis') had been placed carefully to one side. The horrific imaginings that we had tortured ourselves with following the ICU consultant's carefully worded explanation had simply not come true. Although profoundly deaf, Tom was unchanged in terms of intelligence, character and capacity to speak. Within a couple of months he was walking on his own again and nagging fears there were abated. He was the same boy.

But yesterday's appointment brought it all back. The physiotherapist's assessment was that yes, our friend Deborah was on the nose with her diagnosis and Tom has some core stability issues which he does his level best to accommodate and conceal. There is also a degree of hypotonia - or poor muscle tone - which wikipedia identifies as a possible outcome of meningitis, presumably because of damage to the area of the brain that coordinates skeletal muscle.

As I said above, this isn't really news although it does shed a different light on how we move forward. Up until now, as is obvious from this blog, the focus of our attention has been Tom's hearing and his learning to make the most of his cochlear implants. His progress with these has, and continues to be, outstanding. Now we must help Tom in whatever way we can with this challenge.

There is another old wound that has been opened by these events though... Linda, the physiotherapist who came and assessed Tom and is starting to work with us on exercises and games to help him? She's a private physiotherapist.

Tom made two outpatient visits to the children's centre for physio before he was discharged over a year ago. He had only been walking again for a couple of months and was much more unsteady than he is now. Yesterday we discussed the prospect of getting Tom re-referred in the light of her assessment but Linda, a former NHS physio herself, suggested it would be pretty unlikely that he would be regarded as a priority and seen any time soon.

Well that felt good and left us in good cheer...

I must state again that we are eternally grateful that we still have our son. To the doctors in A&E who quickly diagnosed the meningitis that our GP had missed, we thank you. The doctors, nurses, OTs and physios who cared for Tom (and us) through that three week period - you are all wonderful, dedicated people who gave our son exemplary care and started him on his road to recovery.

The cochlear implant team at Nottingham had Tom on the operating table within 8 weeks of losing his hearing and switched on in twelve - incredible work that set up the success story that is our son's language development since.

But it is beyond this acute phase of Tom's treatment that the cracks show and the hurt begins.

I used to be a big fan of the movie and TV series M*A*S*H. Beyond the political references and marvellous satire, the depiction of doctors doing heroic patch-up work as rapidly as they can has stuck with me and is brought to mind now. Whether it be the budgetary constraints, competence or lack of will, there seems to be a point where a patient is considered 'patched up' and 'well enough' to be dispatched back to the trenches. Presumably the necessary target has been met and that patient adds no more value to the hospital or PCT's ratings. Whatever the reason, it is too soon.

Tom was considered 'well enough' with one implant and 'well enough' with a degree of hypotonia but is he? It is patently obvious that more could be done as we have found. Through the generosity of a charity, family and friends (and the fact that we have good jobs) we have been able to do more - to continue Tom's recovery.

And the main reason? Because we've got enough money (just).

Enough to pay for a second implant, enough to pay for Auditory Verbal therapy and now we will find enough to pay for private physio.

This isn't a case of parents making exaggerated requests for superfluous treatments because they regard their child is special in some way - these are obvious needs identified by respected professionals... and turned down by others.

I don't have an answer for this... I recognise that the vast majority of health professionals we have been in contact with would have loved to carry on Tom's treatment but thinly spread resources just won't stretch. What I hate though, is the inherent waste, the failure of processes, the inconsistency of provision and the deceit.

Something has to change because this isn't quite right.

Tuesday, October 09, 2007

Mummyless weekend

'Ok - lets show Mummy that you didn't survive on chips, sweets and biscuits all weekend'

'Don't just store in in your mouth - swallow it!'

'And smile... yes, the apple looks good'

'Now show mummy that we miss her terribly'

Saturday, October 06, 2007

When Mum's away...

Tom and I are having a boys weekend. Nik has gone to visit a friend in Sweden leaving me and the little guy to do what boys do when left without the influence of the wiser and tidier gender.

So what have we done? Well, have lunch in a pub (or 'cafe' as Tom refers to any location where food can be purchased), watch the rugby and finally slump in front of a favourite DVD while stuffing our faces with sweets.

Is that so wrong?

As far as his mother's absence is concerned Tom thinks it has one purpose and I've had to remind Nik on the phone to avert potential disaster. He is expecting a yellow present and he expects me to receive a red one. Where did he get this idea? Who knows but there might be tears before bedtime tomorrow.

Friday, October 05, 2007

A Tracey Day

'Not a Karen Day?' Tom inquired over breakfast.

'No it isn't' I confirmed. Karen days are fine (Karen being Tom's adored childminder) he just likes to know what's coming so that he can adjust his list of demands accordingly.

'Its a Tracey day!!' - Tom suddenly remembered what we'd been talking about yesterday evening. It has been a while since we've visited the implant team but Tom hasn't forgotten the drill.

'I say to Tracey 'Can I play with your cars please?' and Tracey says to Tom 'Of course you can'' Tom rehearsed this opening speech a few times before we got there and I scripted a few extra bits such as 'It might be nice to say hello first' while hoping that Tracey didn't fluff her lines.

I needn't have worried. Tom adores audiology sessions - these people with their fancy room, computers, loudspeakers and all those wonderful games. The simple truth is that it is evident to the audiologists (only one of whom is called Tracey. Susan sits in the booth doing her bit without getting any of the glory) within a minute of us walking in that everything is just fine. Despite it being close to six months I would guess since we were last there, Tom is immediately at ease and rabbiting about every aspect of the day thus far that has caught his attention.

The session involved a variety of tests on both ears and Tom concentrated for pretty much the full two hours although he was unable to stifle a yawn towards the end and we began to suspect he was sabotaging the exercise a little. The results were, however, fabulous. Tom is hearing down to the 30db level and is differentiating between similar sounds heard through a loudspeaker - 'horse/house', 'cup/duck' and the like.

I've said it before but its worth reiterating - these implants are an utter marvel.

Our route home took us past the hospital where Tom was admitted with meningitis and where we all spent those long tortuous days and weeks, not knowing where any of it would end or what we could hope for. I don't plunge into any kind of regressed depression when I pass there these days which is a good job considering how frequently we are nearby or visiting. I do think back though.

'That's Mr Twigg's hospital!' shouts Tom and I chuckle with a degree of relief. I'm sure Mr Twigg will be surprised to hear that it's his hospital but it'll serve for us. Mr Twigg is Tom's orthoptist - he has lots of funny toys he puts on the end of pencils that light up. We visit his clinic frequently for delightfully non-invasive, utterly routine tests and if that's all that comes to Tom's mind when he sees that hospital then its more than alright with me.

There doesn't seem to be any recollections of events such as these. I hope it stays that way and that when he reads what I've written here it will seem like a slightly scary thing that happened to someone else a long time ago. He is starting to become aware that he has 'special ears' and we are building his understanding as carefully as we can but the sad stuff that got him to that point is for us to carry and protect him from.

Apologies for the slightly reflective tone at the close - in the midst of the brightness that Tom's astonishing progress continues to be there will always be these reminders.

Tuesday, October 02, 2007

Tom media watch...

A few news sites and programmes carried pieces about the Countess of Wessex's visit to the Ear Foundation. The longest piece I've seen is on the Deaf Blog - if you're interested in that sort of thing and wanted to check that I hadn't just been photoshopping!