Wednesday, January 31, 2007


We just got back from the Alps and, as you can see, Tom fills out a snowsuit quite nicely, the belt gives him a most peculiar hourglass shape, accenuating his nappy-clad butt quite spectacularly.
Surrounded by indulgent family, the boy had a marvellous time. Too marvellous a time on occasions which led to a couple of spectacular tantrums, the most dramatic of which led to this:
An hour or so of screaming after a trip in a telecabine ('flying train' in Tom parlance) and a spot of light sledging takes it out of a boy. Thank goodness for underfloor heating.

Friday, January 12, 2007

Everyday thoughts

Last night Tom threw an almighty tantrum. It’s hardly surprising, he is two after all, but they are fairly rare and, in our sensitised parental state, we tend to pick over the aetiology of the tantrum, catalogue its cause and symptoms and then do our damnedest to avoid it happening again.

Because tantrums suck.

This one was my fault although, in the no-blame culture that pervades our house (really? OK, no overtly allocated blame then), there were many contributing factors that could be identified. Tom was exhausted when he got home from the childminder, whose daughter had plied him with chocolate just before he left, and, consequently, he was a greater pain in the butt at dinner time than he normally is. I love this pain in the butt, you understand, but his utter disinterest in meals until the ice cream comes out drives us to distraction.

So far, so toddler. So far, so normal family. The boy’s pooped (he’s decided that he’s not napping during the day any more), has just got home and wants nothing more than an opportunity to play in ‘Tom’s house’ while his parents, a little strung out from their respective working days, want to undo the dietary damage done by other people feeding our precious firstborn and assuage some standard, two working parents guilt. We get through it without redecorating the floor.

So we move on to bath time and everything starts to unravel; the tantrum kicks in, the snot starts to flow and… we have our most stark daily reminder of Tom’s deafness. What is a straightforward refusal to remove an item of clothing becomes infinitely more difficult to deal with, for me at least, when the item in question is his implant processor harness and the accompanying coils that enable him to hear. Refusal to remove a shirt is just a two year old who has lost his ability to understand; refusal to remove his hearing is something far more profound, whether it’s a mere extension of the stubbornness or not.

Last night this was compounded by Nik’s discovery that Tom’s right implant wasn’t working and, presumably, hadn’t been for some portion of the day. We know he can hear with his left implant, it was tested only last week, but listening with only one ear is incredibly tiring. The extra concentration required is enormous and must have contributed significantly to Tom’s fatigue and mood.

The battery in the right processor was flat – a development we hadn’t yet encountered. I instantly knew why; I had left the processor on the test setting overnight and, although I’d noticed in the morning, I had been in a rush to get Tom dressed and out of the house and had treated it with a laissez faire, ‘it’ll all be OK’ attitude that I would to dressing Tom in yesterday’s vest or forgetting his gloves.

I thought that attitude had gone when Tom had contracted meningitis… and certainly would never be applied to anything related to his hearing. Yesterday evening when all the crying was over and the boy slept, and now again when I write this, I was drawn back to the painful days when Tom was ill and I was reassuring myself and Nik that it was just another childhood bug, that all he needed was Calpol and an early night. And that is a place I don’t like to go but this stuff is all still so close to the surface. My coping mechanisms are good, most of the time but, given an opportunity to introspect, I leap at it.

Take this, seemingly innocent example. Checking on Tom when he’s asleep is one of the evening’s little luxuries that Nik and I share. Then one day she asked me:

‘Do you like this so much because he hasn’t got his processors or glasses on?’

How about that for loaded? Our angel, just as he was before all this happened, not how he’s going to look day in, day out for the rest of his life. How are we going to help his self-esteem if, deep down, we still linger over the gadget-free pre-meningitic version? It seems that every way we turn; every preference we show is entrenched with hidden meaning.

So – getting back to where I came in - avoiding this sort of tantrum and this sort of journey into the recent dark past is based on good battery management. Remember that.

Wednesday, January 10, 2007

Releasing the pressure valve

So I've wandered a little further out into the blogosphere (I'm glad I don't have to say that out loud - I would have to castigate myself mercilessly) following hyperlinks hither and thither. As one might imagine, I've been drawn to experiences not entirely dissimilar to mine. On the other hand, maybe you wouldn't imagine such a thing - I've questioned the sense of it on numerous occasions when the empathetic tears start to fall and my shoulders start to involuntarily shrug along with the sobs. They don't last long, by the way, these involuntary outbursts of emotion. Maybe, in fact, I've subconciously stumbled upon a coping mechanism:

Poignant Blog => Outburst of pent up emotion pertaining to our situation => Feel better and can be strong, paternal type again.

Anyway, the blogs you MUST read:

The Wait and the Wonder - Moreena writes humorously and poignantly about her family's life, particularly the impact of her six year old daughter's congenital liver condition which has led, so far, to two transplants. I've been trying to put my finger on whyMoreena's blog spoke to me; clearly there are obvious parallels - we both have first hand experience of sitting next to comatose offspring and have gained narrowly specialised medical knowledge that would stand us in good stead on Mastermind - but the thing that bit was her depiction and musings on the normal life we strive to lead when the emergencies are behind us, the anxieties have been suppressed and 'everyday' squeezes back in.

The other is My Beloved Monster & Me - the blog of Robert Rummel-Hudson who writes, mostly, about his daughter Schuyler, the Beloved Monster of the story, who has Congenital Bilateral Perisylvian Syndrome (CBPS) , his own dealings with 'the Beedies' (diabetes) and how the two of them, along with Mum occasionally, rub along and face down the challenges. He's blunt in a way that people who've been sledgehammered with a diagnosis like CBPS are allowed to be and he's wickedly funny with it.

Once you've walked in Moreena and Rob's shoes a while, I suspect you may see the world a little differently.

Friday, January 05, 2007

Audiology Update

The 4th January saw Tom's 8 week tuning session for his left (sometimes referred to as 'new' or 'our') implant. Attempts to encourage him into a game whereby he put a brick on a tower every time he heard a sound didn't quite work as intended with Tom intent on adding as many bricks as possible before the urge to destroy overwhelmed him.

An even greater challenge for the audiologists (Sue and Tracey - we've had to change because of our odd publicly/privately funded state) was identifying a quiet period long enough to play a sound in and judge Tom's response. He was far too busy demanding cars from Tracey and explaining their movements to spend any time paying attention. He's two you see.

My assumption that the session was something of a washout was dispelled by the team who were more than satisfied with Tom's progress. He's hearing at below 40db across the frequency range which, if my interpretation of such things is correct, is the equivalent of a mild/moderate hearing loss. Given that his right ear has been implanted and switched on slightly longer, and definitely his 'good ear' still, I would have to declare myself supremely satisfied with progress thus far.

Equally pleasing in many ways was Tom's behaviour during the testing. He is now comfortable enought to let his inquisitive nature come to the fore. Rather than cling to me, Tom wandered off into the 'control booth' to check on Tracey's progress with his processor - we had persuaded him that she had to borrow it so she could 'fix it' - and ascertain the whereabouts of the Postman Pat van Tracey had claimed was 'lost' (he found it - he has a gift that way). He also let Tracey replace his coil when it detached - a major step foward in the 'personal space' stakes.

Nik had read somewhere that it took at least six months to get over meningitis. It seems that may be the case - he's growing more confident, happier around new people and darned cheeky with it. He's currently experimenting with how far a charming grin will get him and it has become his first line of defence when challenged on naughty behaviour. We're getting very good at stifling our own giggles.

Wednesday, January 03, 2007

Celebrating Holidays and the Art of Walking

It's over seven months now since Tom was discharged from hospital. He didn't regain the ability to walk for another month or so.

A couple of days after Christmas we took a walk to see Threave Castle. Tom walked well over a mile on slippery leaves, collected sticks and bounced on the odd farmer's fence. Admittedly, much of the return journey to the car was incentivised by the promise of jelly babies but he was up for the challenge.

He also developed a worryingly defiant urge to grab barbed wire fences which we must nip in the bud.

On New Year's Day at our local park. He climbs short ladders, he goes down slides, he loves his mum... he's a happy, active two year old.

Is this really the best way to run a health service?

I have been striving to achieve a zen-like state since Christmas. I have has lots of sleep - Tom has developed a penchant for lying in until after eight o'clock - and feel like I can face the world with a degree of calm and a level of rational thought that tended to escape me in 2006.

Then I watched a report about this on the BBC this morning, described on their website thus:
'Controversy over child referrals'

GP's here have been sent a letter detailing the cost of referring children to the local hospital.

It asks whether any of this could be done more cost effectively.

The letter says the trust spent £1.5 million referring children to the local hospital last year

It points out that 79% were discharged within a day and goes on to say "this area of activity was one which was likely to achieve cost savings"

It doesn't take much of a leap of imagination to take the same view as GP Eric Rose, quoted in the article as saying:

"I think if you're fairly new to the job, you're impressionable, you're given the impression that you're referring unreasonably - you might think again."

"I think it's potentially dangerous. It would only take one child that should go to hospital not to be sent to hospital and for there to be a tragedy and I think there would be a lot of questions asked."

I wonder if something similar had been received by our GP. We took Tom to him the day before he was admitted to hospital with pneumococcal meningitis.

We were sent home.

Depending on your measure of a tragedy we either narrowly escaped one (our boy is still here) or fell victim (he remains profoundly deaf) in a manner not unlike that described by Dr. Rose.

A measure of balance (one that drives my wife a little bit mad) reminds me that meningitis, along with many childhood illnesses, is notoriously difficult to diagnose - there are enough desperate stories of children dying after misdiagnosis in paediatric A & E departments to illustrate that - but does putting pressure on GPs to think financially as well as medically when making such decisions really make sense... to anyone?