Back to the old routine

For a glorious three week stretch through the middle of January Tom has been professional-free. Following a tuning session with the audiologists on the 4th, there were no early morning motorway excursions down to Bicester therapy sessions; no psychological torment in the QMC’s bizarrely obstructive multi-storey car park and no house callers armed with ring binders and bags stuffed with aurally challenging toys. Strange times: no ‘interventions’, no assessments – just us.

This hiatus came to an end with a visit to the nursery/infants that Tom will start attending in September – an occasion that succeeded in being both curiously reassuring and intrusive simultaneously. We draw strength from the affirmations of Tom’s progress that generally accompany the appointments; concerns accumulate like weeds in the kitchen garden and, while we’re both becoming more accomplished with the hoe, they keep coming back and expert advice is required.

So we met up with the marvellous Tanya, Tom’s Teacher of the Deaf, for an appointment with the school’s new Head teacher to discuss the preparations required for Tom’s arrival. The impact our son is about to have on this school is multi-faceted and will include training for staff on the more practical aspects of dealing with our wired-up bionic boy, the potential adaptations to the fabric of the building that should make it easier for Tom to hear and possible support provision.

The school, thanks to Tanya’s forward thinking and organisation, is ahead of the game and I came away reassured that things will be OK. Now, a few days on and with wearying predictability, there has been a stirring up of emotions. Between Nik and me, it’s safe to say, there are a surfeit of emotions and their stirring up is a fairly frequent occurrence. Some of them are predictable anxieties tied up with transitions and the thought of our baby going off to school; the sort of every day anxiety we like to wallow in, celebrate and adorn with associated worries such as ‘must get the little blighter potty trained’, ‘he will NEVER sit still’ and ‘he’s too little!’.

Others, though, are a little more specific and, for me at least, hark back to unspoken expectations about my son and his glorious progress; a triumphant, joyful, painless romp through childhood featuring a modestly worn yet undeniably keen intellect, prodigious sporting talent and an ever-present smile.

This vision did not include support teachers, nor did it include a strikingly obvious difference that marked him out from day one. The tale I had woven for Tom is typical parental aspiration - the emphasis was on triumph and there was a noted absence of adversity.

We have met and continue to work with some talented, caring people because of what has happened to Tom. They have an enormously difficult task to do because, of course, we would rather have never met them. If we’d gone through life with only a vague understanding about the devastation that meningitis can cause and the impact of deafness on a child’s life then, let’s face it, we wouldn’t have worried too much.

The way it is though, Tom’s implants are working – his understanding and his spoken language is flourishing thanks to these audiologists, therapists and teachers. As Jacqueline Stokes tells us every time we see her, he is a clever boy and is going to flourish. The bigger challenges, I think, are social and, rereading this, making sure his dad doesn’t fuck him up in an appropriately Larkinesque way. The last thing he needs is the baggage of my expectations.

The Dreaded QALY

I mentioned some time back that Professor Quentin Summerfield would be giving a twilight lecture on the subject of bilateral implants in the context of the British National Health Service. It took place on the 25th January - there is a rather crumbly recording of it on the Ear Foundation's Recent Twilight Lectures page.

It is a balanced, highly rational and necessarily impersonal description of the factors that influence who should get a cochlear implant (or two) and how the decisions are arrived at. Prof. Summerfield gets quite mathematical as you might imagine and it might take you a couple of run-throughs or frequent use of the pause button but he is heavily involved in this stuff - you can safely assume that he knows what he's talking about.

Much of the discussion centres around the QALY - the Quality Adjusted Life Year - which is an attempt to measure the impact of medical interventions on both the quantity and quality of life resulting from said intervention. By throwing into the equation the cost of the interventions, the 'Powers That Decide Such Things' can make informed choices about which procedures to fund and to whom, based on their cost-effectiveness, i.e. it is the cost per QALY that is used to prioritise across treatments with a threshold of €50,000/QALY as the upper limit for consideration. The more QALYs you can create on your budget, the better.

Single cochlear implants to both children and adults, you'll be glad to hear, fall safely within the threshold for cost-effectiveness but bilaterals for adults most definitely do not. The cost-effectiveness of bilaterals for children, you'll notice if you get that far in the lecture, is unknown. Beyond positing that its likely to be higher for children than adults because of the expected impact on educational costs and relative lifespan, Summerfield cannot say although he does go on to describe the research that is about to start in the UK that will inform the calculation.

Why am I revisiting this and what does it mean for Tom? Well, I can't get this QALY thing out of my head and it has reawakened the medical researcher in me that has lain dormant for a few months. Exploring, for example, how a measure is put on life quality (there are numerous ways apparently, including the EQ-5D) is one new preoccupation. For the most part though, I just think about what impact the research and ongoing NICE project will have on us and Tom's future.

Something else that's unclear, unresolved and needs waiting for... ain't that just the hardest part?

Snowtime

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.

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.

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.

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.

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?

You know its working when...

We've been experiencing an avalanche of verbal dexterity from Tom this past few weeks - all of it the sort of stuff that kids who are two-and-a-bit do and their parents think is the cutest ever (because it is) - and all of it music to our ears.

Tom is our only child - our first go at this parenting lark so I often wonder whether we would be as agog, as obsessed anyway but, with the importance of his language development being so sharply focused in our minds because of his deafness, every little step feels like a major landmark to be celebrated. So here are a few anecdotes recorded for posterity.

I've got into the habit of asking Tom what he's been up to at the childminder's. Last week he told me very clearly:

'Tom-Tom walking holding Karen's hand. Louisa-May in the buggy'.

How much information is that? Not much of a thrilling narrative I grant you but it stuck in his mind and was the most important thing to tell me when I asked. I checked with Karen; it was all true.

Tom doesn't always stick to the literal however, and that makes following the thread of his conversation a little more challenging. Last week, completely unprompted, he named his hands 'Harry' and 'Trevor' after his two favourite cuddly toys. It wasn't a one off either; Harry and Trevor have made subsequent appearances at mealtimes, helping Tom with his fork and spoon as necessary. They even have to have chairs pulled up for them - which makes me think they're evolving into fully fledged imaginary friends. I'll keep you posted about their movements.

One of the pieces of advice from AV Therapy that has stayed with me relates to the importance of staying in Tom's 'head space' - as a parent you can usually tell from context what your toddler is thinking about and, therefore, likely to be saying (hence why parents understand their offspring when everyone else thinks its nonsense). With Tom its getting less straightforward. Admittedly 90% of the time it's trains, cars and/or 'airplanes' but that other 10% can take us shooting off anywhere.

The night before last, for example. We were reading a Bob the Builder book at bed time. Bob was chatting to his completely platonic friend, assistant and project manager Wendy across a double page spread. Tom started to turn the page and it creased in a little overlapping the facing pages,

'Bob and Wendy kissing' and he burst into a fit of giggles.... and repeated the fold over and over, as we both giggled merrily to ourselves. I think all the time he spends around little girls at the childminder's might have something to do with that one.

The list goes on...suffice it to say we're as proud and as obsessed with everything our child says and, maybe by writing it here I won't feel the need to tell absolutely everyone I meet.

Catching Up

I have been remiss of late so far as updates here are concerned; it's not as if nothing has happened - quite the reverse which is why there's not enough time left over for blogging.

Firstly - Tom

Although it is regarded as almost scandalous to say it in certain circles we often 'forget' Tom is deaf. The bright blue coils stuck to the sides of his head are still there (complete with a picture of a tiger on one and a monkey on the other) of course so when I say 'forget' what I mean is that we don't have to make any special considerations when we are talking to him. He repeats pretty much everything that is said, to him or otherwise, and his understanding is impressive and subjective. With his potty-mouthed uncle staying with us at the moment, that makes for some risque situations but, luckily, Tom hasn't cussed at the vicar just yet. He's at the age where he often chooses to ignore what is said to him because it isn't in line with his desires - the fact is that most of our daily challenges are based on him being two rather than being deaf.

And that is a very cool place to be.

Sure, if we look objectively at the pattern of our lives now, there are plenty of 'new' elements that make things less straightforward; from simple things like ensuring batteries are charged, processors are tested and coils staying on all the way to the scheduling of appointments and working with professionals. But, just like everything, you get used to your new reality and, hey, raising a kid brings with it all manner of new skills and situations; by thinking about our situation as just an extension of that it becomes much more managable 'head-wise'.

Claims and forms and appeals and stuff

The good news is that the DWP came through with the Disability Living Allowance for Tom after an appeal which included contributions from the National Deaf Children's Society, (one of) our Teachers of the Deaf and a particularly passionate plea written by Nik which managed to stay just the right side of vitriolic while making it plain that we didn't appreciate being made to jump through all these ridiculous hoops while others, in the exact same situation, received payment after the first application.

There are very good reasons why the DLA isn't handed out without consideration and a certain level of proof but the inconsistency which seems to dog all our dealings with public services can get a little wearing.

As for the greater issue of the ongoing costs of Tom's left implant: we have yet to hear from the Healthcare Commission, who are conducting a review of the PCT's decision. When I say 'conducting a review' I mean ' leaving in a pile of other appeals until their overstretched staff can get to it'. Probably.

Since the first appeal Rushcliffe PCT have disappeared; merged with five others to form some super Nottinghamshire Teaching PCT (this is an approximation - it makes for a long letterhead whatever it is). Our GP has kept up the requests and the funding situation is set to be reviewed by some august panel.... so more watching of this space is required.

So...there's a lot of shrieking going on downstairs. Tom's imagination and sense of fun is growing exponentially. He also has an occasionally abstract view of the world - moments ago he decided that a discarded satsuma skin was an umbrella and that it was raining in the dining room so it needed to be on his head. That is what AV Therapy does to you - and it keeps us all marvellously entertained.

Saturday Mornings

Saturday morning has become 'Dad and Tom' time. Leaving Nicky to enjoy some man-free space, we take ourselves off on minor adventures. They aren't particularly dramatic adventures I grant you but, because my car is old and two door, Tom rides up front and any trip out has a companionable feel that we both revel in.

So this Saturday morning's activities took in the car wash and the swimming pool. Tom has had a 'thing' for cleaning cars dating back some time. This usually just involves him rubbing his bare hand over a filthy car while saying 'cleaning! cleaning!' before transferring said filth to my trouser leg. I thought it was high time he saw how it could be done without spreading road grime all over my entire wardrobe and our house.

In the back of my mind I thought it might not be plain sailing - I've often thought myself that the 'thing that scares the water away' looks as if it may not detect the windscreen in time and regularly check that I've got enough room to duck so how it might all seem to a two year old experiencing it for the first time...? What with the other-worldly sounds and vaguely claustrophobic air?

As it turned out, Tom rose to the challenge. Beyond a few apprehensive 'daddy cuddle's' the wee man coped admirably - its darned noisy in there but Tom's bilaterals really seem to be helping him in such situations. I could easily comfort and reassure him; he could evidently hear much of what I was saying above the din.

So we took ourselves on to the more challenging part of the morning - the swimming pool. Tom ain't what you'd call a water baby. Early experiences in cold pools has made him particularly suspicious of the whole affair and, as you might imagine, throw in not being able to hear while you're splashing around and you have a recipe for trouble. Nicky finds the whole experience quite stressful and fears that she passes this on to Tom in the pool so its left to me to attend to the gradual, confidence-building introduction to the water.

Things are going in the right direction - Tom will happily go down a small slide that ends with a splash so long as the waiting water is warm. He'll clamber in and out and will come in to deeper water so long as he's got hold of me (usually by the chest hair which is a not entirely pleasant experience). This is fine for now - at some point we need to either develop the sophisticated signing required to reassure and teach Tom to swim, wait until we can give him instruction verbally on the poolside that he can retain, or Advanced Bionics come out with a waterproof model. Any suggestions gratefully received.

For now we just attract a different set of curious looks from everyone around us. Instead of the rather arresting sight of wired gadgetry stuck to my boy's head causing people to stare I see the dawning realisation pass across faces; the frantic waving of hands has something to do with why we're not shouting like every other father and son in the pool.

Boy in a Boot (or Trunk)

I always liked sitting in the back of estate cars too.

The Miracle of Flight

We've just been away for a long weekend and, much to Tom's delight, it involved 'airplanes'. His excitement was something to behold, the whole airport/aeroplane experience only being marred by the odd rituals now involved in our passage through airport security.

People with cochlear implants aren't supposed to go through the big scanners. In addition to, I presume, setting them off even if you removed every shred of clothing, there is a risk of wiping the maps in the processor. But that wasn't all; manufacturers do a 'loaner' scheme providing implantees with spare, mapped processors for the duration of the trip (which reminds me, they need to be returned - there's a charge associated with failure to return in the order of £2000 or so) which meant that hand luggage has to be emptied and suspicious brushed aluminium objects with lots of dials have to be explained.

So picture the scene; after trying to persuade an active toddler, who is almost beside himself with excitement at the prospect of seeing 'airplanes', to stand in line for 10 minutes we are confronted by serious looking people who, in current times, must suspect everything and everybody. The general air of seriousness that pervades the security check registers with Tom who starts to get agitated and clingy just at the time we are presenting our 'Don't scan our baby, it'll break him' letter from the Implant Team (in the appropriate language), with that degree of nervousness that accompanies many dealings with uniformed people (particularly those with the power to inspect you more intimately than you'd usually feel comfortable with).

As far as 'scenes' go, we fit the particularly English stereotype of hating to be in the centre of one. If others in the queue hadn't notice the strange things on the sides of Tom's head while we were waiting their attention is certainly captured at this point. We have a plan; I go through the detector first so I can be there to receive Tom and comfort him while he is 'inspected'. Unfortunately, by the time I get in position, he's bawling; scared of the big bloke hanging over us, frustrated by the hold up on the way to the 'airplanes' and a bit peeved that he can't do what Daddy has just done and gone through the 'tunnel' (he does love a good tunnel). By now everyone is staring (or, if not, it feels like they are) and I fight the desperate urge to shout 'They're a form of mind control - I just didn't want to electrocute him in front of you!'.

And then its over and Tom gets to see more 'airplanes and it's all OK. The customs officers are never anything less than kind, considerate and desperately keen to stop Tom screaming at them and, if we fly often enough (and lord knows we try), he will get used to it.

Will we get used to the staring? More importantly, will Tom be able to deal with it? You can tell yourself as many times as you like that they're the rude, ignorant ones and you can try any number of strategies - ignoring, stupid comments, staring back - but self-conciousness is dangerously crippling and the attention is an all-too-raw reminder of what has happened these past seven months.

As is the way of such things, Tom put it all behind him with consummate ease and attached himself to the plate glass overlooking the hard standing and runway until it was time to fly. When he announced his heartfelt desire to 'Cuddle the airport', we knew the security experience had not left any dark shadows.

Just the wrong height...

Largely speaking Tom is a pretty laid back two year old. He talks alot... actually, the word 'incessantly' is probably more appropriate... but he doesn't really get 'hyper'. He likes a bit of a dance now and again, he most certainly approves of tickling but he doesn't reach that 'bouncing off the walls' level that you see with some kids. What he does do occasionally, though, is bite clothing. Like a puppy he'll get a bit of shirt between his teeth and hold it. We're training him not to but now and again he forgets himself and, unlike with a puppy, a tap on the nose with a rolled up newspaper isn't approved of.

Yesterday the 'biting clothing' thing nearly cost me dear. Tom's reached the point where his head is just at that height - you know what I'm talking about? As a dad I expect the odd accidental injury of a sensitive nature; overzealous tickling may lead to the odd stray foot landing somewhere but I certainly don't anticipate walking into the kitchen and having my son sink his teeth into a little more than the fold in my trousers.

Had to laugh about it afterwards though... once the tears have been wiped away (my tears that is). I think the stern faces and chorus of 'daddy's hurt' has sunk in with Tom - not unlike his teeth.

Back to the old routine

Another day, another milestone...

Nik returned to work today for the first time since Tom contracted meningitis. It hasn't been the most pleasant of transitions for her as one might expect; there's enough personal and societal guilt tied up with being a working mother (however hard we try and rationalise it all and however much people think things have moved on) and putting our son into childcare without the added complications that prolonged illness and deafness bring. Jeez, there's a whole separate blog and debate just there. Anyway, we won't open that one up too far just now.

The return to the childminder (Karen) has been phased over the last few weeks, ostensibly for Tom to get used to spending time with her again but also to allow Nik a little down time. As it is, appointments, letter writing and filing (Tom needs a full time clerk to manage his correspondence) have messed up any chance of that happening. Couple that with the fact that the boy has cried his eyes out at the mere mention of Karen and you can begin to imagine how stressful ths period has been.

Yes, more stress.

But today Tom defied all expectations. I told him where we were going once he was belted in 'daddy's car' and, although he wasn't his usual, van-spotting ball of chat, he took the news well. It seemed a particularly adult, stolid reaction; he bore the bad tidings and, although clearly not over-enamoured with the prospect, he was resigned to the inevitability of it all. His only words on the journey were 'Daddy sit down Karens'.

So there we were a few minutes later, daddy sat down as requested, with Tom standing close. Then, having decided he was ready, Tom said 'daddy work, daddy's car'. I was dismissed - 'Don't drag this out any further father, your work here is done'. He was so brave, I nearly cried.

Naturally, Nik thought I was just making it up so that her first day was less stressful. Work still sucked but, hey, that's work for you.

New Friends

Back in June, a few days before Tom received his first implant, Nik visited the Ear Foundation for an open day. Directed at prospective/potential implantees and their families, the day was a tremendous source of information imparted not only by professionals but also those who’ve been through it and went a long way to addressing Nik’s concerns. What it also did - probably the most important benefit in fact - was prove that we weren’t alone.

I don’t have many clear memories of my teenage years; age and a general feeling that I didn’t enjoy the experience very much has led to a suspicion that I watched those years on a bootleg videotape rather than participated in them. One of the few clear memories I have, though, is of having a persistent feeling that I wasn’t really in on the joke. Life was going on, sure, but when I approached, all the participants put their hands in their pockets, started whistling (metaphorically of course) and waited until I’d gone away until continuing with life without me. Why am I bringing up this crushing teenage paranoia? I’m not entirely sure; it might be to do with the fact that I’ve been awake far too long today but I did feel a sense of exclusion again during the early appointments after Tom’s deafness was diagnosed. As a family we were isolated; we were told about this group of people like us but, until we spoke to or met any of them, it didn’t really help.

This is where The Ear Foundation come in (it’s also where CICS, the meningitis trust, NDCS and the CICircle to name a few come in too, bless ‘em all). On that day in June, Nik learnt a great deal about devices, therapies and services but she also met Donna and her son Noah. Noah is a few months younger than Tom… there isn’t much in it…but that isn’t where the similarity ends of course. Noah and Tom also share the misfortune of contracting pneumococcal meningitis at the same time, and losing their hearing as a result. I wouldn’t wish the pain, tears and heartache of what we’ve been through on anyone but to be able to share with people who know exactly what its like without any need to explain… it has made an enormous difference.

Contact with Donna, Richard (her husband) and Noah has continued through emails, phone calls and a brief meeting. Last weekend we met up again at the Ear Foundation’s family weekend in Centerparcs where we sat in a restaurant chatting about our boys and our experiences. Tom and Noah charged around, laughing and just being two years old. We could have talked all evening.

Interesting reading... and a date for your diaries

Over at Lotte Sofie Lotte's dad, who goes by the name of Cloggy, has posted a link to an Advanced Bionics compiled pdf summarising bilateral implant research. A very handy document to take to your appeals...or peruse and marvel at the wonders of modern medicine.

It may also be useful pre-reading for this Twilight lecture due to be given by Professor Quentin Summerfield on 25th January 2007. Hopefully the Ear Foundation will be webcasting it as its subject matter - Challenges to be overcome before cochlear implants can be provided bilaterally in the National Health Service - raised more than a few hairs on my neck.

Not-so-interesting small world facts pertaining to this and putting my interest in context:

• Prof Summerfield has published the only, as far as I can make out, bilateral cost-effectiveness study in this country (a few years ago, based on adults - I banged on about it back in July)
• Prof Summerfield's opinion was sought for Tom's bilateral appeal case. He gave an interestingly ambiguous answer that we felt leaned in favour and justified bilaterals for post-meningitic cases but the PCT decided it leant far enough the other way.
• I was asked to speak at the same conference from the patient/service user perspective. Prior commitments (a mountain covered in snow and lots of vin chaud) prevented it.

I wait with baited breath.

In lieu of a more recent pic (there's been too much snot) here's Tom on a train from a month or so back. It counts as current because he hasn't stopped talking about it yet.

Marjorie Sherman Lecture

I shirked my bathtime duties last night and attended the Marjorie Sherman Memorial Lecture at The Ear Foundation. You look for silver linings where you can and being within 10 minutes drive of the HQ for the only charity dedicated to cochlear implant users in this country is something of a boon. Marvellous people.

The lecture, 'Advances in Cochlear Implantation for Children: from hesitant beginnings to an exciting Future', was delivered by Mark Lutman (short biog.), Professor of Audiology at Southampton University. In cochlear implant terms, 1989 is one of the years; a defining point when ethical questions had to be confronted and the brave decision taken to implant the first paediatric patient in the UK. The lecture took us from that point, through to the current practise that we have benefitted from and on to cover some of the research that makes the future look incredibly promising for Tom and others.

All fascinating and well delivered; I even understood some of it. Bilaterals were touched on; Lutman believes in their value and had some very interesting data that demonstrated the improved sound localisation bilateral implantation brings. The fact that, in Germany and elsewhere, such implantation is the norm was mentioned of course...as was the fact that, in Southampton, requests to PCTs for bilateral funding are almost always accepted. The fact that I smiled ruefully rather than spiralling into a pit of righteous indignation shows just how far I've come don't you think?

The lecture was broadcast live on the web - you will find it alongside the other Ear Foundation webcasts . If you find yourself a free hour, give it a listen. In fact, clear a morning and listen to David Luterman and the Gerry O'Donoghue/Sue Archbold lecture too.

Prof. Mark Lutman's lecture - direct link

But what about Tom?

• He has a Stuart Little addiction that we're trying to manage although he doesn't like the washing machine bit and we need to be quicker on the fast-forward button.
• He's suffering some separation anxiety with going back to the child-minder. It involves alot of snot at the moment.
• He looks particularly professorial in his new glasses; he tends to peer over them as they slide down his nose (a little refitting is in order)

Left Implant is Go!!!

Following on from dad and Nik's 'testing' of the new implant, we've been talking to Tom with his left implant only for a few short periods today... and its all working a treat. He responds to his name, repeats certain recognisable words - important things like 'dummy' and 'monkey' - and is seemingly content with just that input rather than the demand for the right implant that we were seeing last week. The confidence this brings in terms of Tom's long-term development is enormous but, even in the short term, the redundancy means that our ever-present fear of processor breakdown or any other malfunction is greatly dissipated.

Healthwatch

As for the croaky voice that the wee fella had at the start of the week that we had attributed to his screaming fit? Well it has turned into a full-on sore throat and cold. When he speaks Tom sounds like a 40 a day smoker with a rib-rattling cough to go with it. Does it stop him talking though? Not a chance.

He still had a fair stab at 'chameleon' when reading together tonight. You can see that I'm focussing on useful vocabulary.

We were just pretending...

We had an unusual experience today in Auditory Verbal Therapy. We were developing pretend play with 'Mummy','Daddy' and 'Tom-Tom' figures were going to the park, eating their tea of playdoh potatoes etc. When it came to pretend bedtime and time for the lights to go off Tom burst into tears. I don't think he's quite separated pretend from reality...or was so immersed that he was that Playmobil boy.

Tell me this isn't uncommon...

Bilateral Progress, Conferences and Being Two

Tom has been switched on bilaterally for a week and a half now. The left (new) ear is still mapped very conservatively but there are signs.... small signs. His grandfather said that Tom turned straight to him when he came into the room out of his sight line and spoke. Just the sort of response we're hoping for.

We occasionally experiment with speaking to Tom when he's only got his left ear 'on' - Nik noticed some verbal mimicking last night so his brain is starting to work something out. He still demands the right is switched on too, but then, he's always been a big fan of symmetry - wouldn't countenance one hearing aid at all; it always had to be two.

Listening to the Pros

I attended a conference run by the Ear Foundation last week – ‘Parenting in the Cochlear Implant Era’. Got to hand it to the Ear Foundation - they put together an impressive array of speakers that included David Luterman, one of the big names in the field of audiology (worthy of autograph-hunting it would seem… although I should be careful what I say having once asked Jakob Nielsen to sign a poster featuring a cymbal-playing monkey.).

The day’s target audience was audiologists, speech and language therapists, and teachers of the deaf; essentially all flavours of professional that we’ve had wandering through our lives these past six months. As you might imagine, a number of chords were struck, not least by the parent who gave an eloquent, humorous and reflective account of parental support needs. He referred back to the early days, soon after the diagnosis of his son’s deafness, when they could barely move for workers and how, now his son has been implanted for some 10 years or more, the visits have dwindled regardless of need.

We are at the start of this process – our current list of regular visitors and appointments stands at:

1. Education service Teacher of the Deaf (once a fortnight)
2. Cochlear Implant Team Teacher of the Deaf (once a quarter or so)
3. Cochlear Implant Team Speech and Language Therapist (once a quarter)
4. Auditory Verbal Therapy (once every two-three weeks)
5. Audiology Mapping sessions (once every four weeks for each ear – haven’t quite worked out whether they are in sync or not)
6. Community Paediatrician (once a quarter or so)

All excellent to a greater or lesser extent…but where have we gained the most insight and support? The parent speaker hit the nail on the head and the Ear Foundation is fully aware of the key element – its other parents we need. You cannot underestimate the relief felt when you don’t have to explain anything and you can cut to the chase about comparing harnesses, mapping experiences and therapists.

Hopefully, we can also compare homework answers. We’ve recently entered the world of ‘The Protocol’ a sizable folder of tables and forms that challenged our knowledge of Tom’s language development – and we thought we were attentive parents.

‘Does he pronounce ‘d’s and ‘l’s?’
‘Does he make and understand complex statements involving two or more actions?’

We’d tried to be good, liberal parents and not get involved in comparing Tom to other children; now we have forms to help us do it in a thorough, structured fashion. I fear we might get told off and kept behind after class– between the appointments schedule, work and looking after the little blighter something has to give.

Watershed Weekend

Tom went to stay with my parents this weekend. For the first time since his illness, we took advantage of Hotel Nanny and Papa while we snuck off to London to catch up with friends. All the assorted professionals in our lives will be delighted with this news as were the hosts, who were thoroughly entertained by Tom’s comedy repertoire, insatiable desire for stories on grandparent’s knees and willingness to succumb to requests for hugs and kisses.

We coped too. Numerous friends greeted us with ‘Where’s Tom?’, he being far more popular than us these days, but his absence allowed us to have an ill-advised quantity of red wine and stay up far, far later than was good for us.

Tom barely noticed us when we went to pick him up, ensconced as he was in Nanny's armchair looking as sweet as you like. He'd managed to talk his grandparents out of lunchtime naps which may well have contributed to the 'overtired' tantrum-to-end-all-tantrums we experienced when we got him home. That's payback for you.

Just when you thought you'd got enough appointments

Months before he got ill with the meningitis that left him deaf, we had already had cause to introduce Tom to the Eye and Ear, Nose and Throat department of Nottingham's QMC. The slight squint that we'd noticed when he got tired or was concentrating led us to get his eyes tested. The latest follow up appointment was today - drawing us back to the way-too-familiar hospital where we have spent just a little too much time this year.

We're getting better at it; better at compartmentalizing and rationalizing, dealing with the here and now rather than the darker then. True, the stomach still knots when we drive under the ringroad and approach the building but, as we steer past A&E, Tom's excited shouts of 'tunnel, tunnel!' help lift our mood.

Appointments of this type with small children rely so much on the experience, skill and speed of the practitioner. I don't want to explain any more why Tom's excessively hesitant around people with gadgets who want to touch his head; you've got the big file - work it out. Today we experienced both good and bad - pretty much par for our course. The big leap forward was Tom's acceptance of the partially blacked out glasses. This was followed by a less-than-successful attempt to diagnose the prescription required. We're not patient parents in these circumstances any more. Tell us what you need and we will do our level best to get Tom to comply - hovering in the background while our son gets increasingly hysterical does not help.

The upshot is that Tom is long-sighted; the squint is his brain's way of trying to bring the world into focus and it does it pretty successfully although a bit of help won't go amiss and may even correct it. So we've come away with a glasses prescription and more wonderful opportunities to make frequent trips to the hospital.

Media Star - again

Via this blog the Nottingham Evening Post learnt of Tom's switch on last week and were keen to run a follow-up story. You can read it at 'Let's Hear it For Tom and Gang'. The paper version took up all of page three and included a large, and very cute, photo of Tom cupping his ears. I'm going to have to see if I can get a print of it.

Being of a slightly disgruntled nature these days, I am not entirely happy with the ending. Don't get me wrong - its a very positive story that shows how grateful we are to all the people who've supported us but the note it ends on, a repetition of the PCT's policy reasoning, left a sour taste. I've given my two penn'oth in Further Media Experiences but a right to reply in print would have been nice.

Appeal Process Update

We've had notification that the Healthcare Commission have completed their initial investigation and are proceeding with a full review of the case. Watch this space - for some months probably as there's a bit of a queue. Understaffed or are we a dissatisfied nation when it comes to the Health Service? Don't answer that.

Tom's Cuteness Check

I've just popped in to spy on him sleeping and you can all rest assured - he's still as cute as ever. Besides still obsessing about 'Airplanes', Tom is currently making us giggle by mimicking a phrase picked up at AV UK. To help with getting Tom to understand what's happening next and do things he didn't necessarily enjoy we taught him 'First... we'll do this... Then.. we'll do the thing you like'. No sooner is 'First...' out of our mouths then Tom is already replying 'Theeeenn...' as if to hurry us on to the important stuff - while perfectly mimicking our tone.

Hunting Conkers

It's been a while since I posted a Tom pic. This was taken a couple of weekends ago when we went hunting for conkers.

And then there were two...

The second of Tom's switch on sessions for implant number two is now behind us. Normally an enthusiastic participant, a combination of things conspired to make this latest visit more testing than previously. We're only guessing of course but we saw the initial excitement at hearing these new sounds give way to a degree of discomfort that needed cuddles to be overcome.

These mapping sessions, while charged with significance and emotion for us parents, also have a degree of tedium for the observer. Endless beeps are played while the audiologists look for degrees of perception and/or discomfort. For Tom, however, the endless listening must be tiring and back-to-back appointments on top of the kind of schedule he's had over recent months meant things got a bit teary on a number of occasions.

We left the Implant Centre with Tom's shiny new kit, made the short journey home where the boy quickly installed himself in front of CBeebies with a drink and a biscuit. Unfortunately we saw the drink again a few minutes after consumption and Tom continued to be out of sorts for the rest of the afternoon. Not wanting to burden his tired brain and delicate demeanour with these new confusing sounds, however conservative the initial map was, we decided to leave the new processor off until the following morning.

The rest of the weekend has passed off without any further problems. We don't anticipate any dramatic changes with the second implant, at least not yet, and it is always going to be difficult to aportion responsibility to the bilateral state while Tom is on such a steep development curve anyway. He is, according to assessments carried out at AV UK and by local Teachers of the Deaf, already within the normal range for speech and language understanding for his age. The benefits are going to be seen over the coming years and particularly when nursery begins in just under a year.

The most significant thing so far though is that Tom can now here the alarm beep that sounds when the headpiece falls off and he seems far more aware of both of the implants now, having explored them much more with his hands. This familiarity is going to be increasingly important as he returns to childcare part-time and may well have to help out his childminder in the coming months.

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.

This Implant was brought to you by...

In the midst of all the anguish, tension and distress of the past few months we have been propped up by a wonderful circle of family and friends, some of whom drop by this blog occasionally. The love and kindness shown to Tom, Nik and I has touched us deeply and I hope we have gone some way towards showing how grateful we continue to be.

The generosity was not just of the 'spirit' variety. As it became evident that the national purse had its limitations (before, in fact), donations began to make their way to us, quickly removing any financial obstacle to the second implant. This has left us staggered - we never asked and yet you gave.

Although we have endeavoured to thank as many of you as would let us, we feel the need to let the world know and be reassured that human beings like to love and help each other given half a chance. So, the following all have shares in Tom's left ear and have nagging rights should he EVER fail to pay attention in school.

• Becky and all the tinytalk groups around the country who took part in the quiz.
• Those who saw East Midlands Today (Anne and Terry) and were touched by Tom's innate cuteness.
• Heidi and Zak and the guests at their wedding who took the option of not enlarging the couple's stock of china. You are such splendid, splendid people and it was a splendid, splendid wedding to boot - Tom was at his charming best throughout, even when telling everyone in the church to 'shussshh the baby's sleeping!!' at the top of his voice.
• Extended family members - aunts, uncles and cousins at various stages of removal - and close family friends who have been generous to a degree that leaves me floored.
• All Tom's grandparents and great grandparents - you are all too lovely for words. Your level of generosity has earned you all the right to be entertained by Tom throughout the school holidays and we will fix up a rota to ensure none of you miss out on your allotted weeks.
• The Vestry Convenor and congregation at St. Ninian's Church in Castle Douglas who gave the proceeds of the church's 15oth anniversary concert and to Balliol Consort who sang so beautifully I'm told (and kindly waived their fee).

There's an even longer list of neighbours, friends, relatives of friends and strangers who, in various ways, have given of themselves for Tom. So...Doreen and Patrick, with your constant supply of sweets, you're not helping us get Tom to eat his tea!

Thank you.

Switch On Part Two

We've just received notification - Tom's second implant is due for switch on this Thursday and Friday, the 12th and 13th (two short spells spread over two days - it's a sensible paediatric thing).

Tomorrow is an important day too - Jennifer over at Happy at Home has her switch on. We'll be thinking of her and hoping that the leaves don't rustle uncomfortably (its a Michael Chorost thing).

A belated mention is also due to another blog friend - Ivan with Hear Again - who is describing his discoveries so eloquently; the voices of his family, music.

We live in incredible times.

The State of the State

I haven't touched on it for a while - and haven't thought about it much either - but our appeal against the PCT's decision is making its slow progress through the system. It now lies with the Healthcare Commission; another large faceless bureaucracy from whom I anticipate a few pleasantries and at least one sentence beginning with the words 'I regret to...'.

The Commission cannot promise rapid action; investigations take time and they have already exceeded their target of 20 working days to complete the initial review by some margin (they received our form some time mid-August). I received an email yesterday which suggested its going to be at least another couple of weeks before we hear anything. The decision to push on and get Tom implanted is fairly well vindicated don't you think?

Largely speaking, I'm fairly calm when thinking about such matters these days. There are occasions when the inadequacies and failings of the system pierce my bubble of zen-like peace but thankfully, for the sake of my sanity, they are relatively infrequent now.

I had a moment yesterday when the Department of Work and Pensions decided Tom didn't qualify for a Disability Living Allowance. More precisely (I suspect) we didn't use the appropriate trigger words in the impressively long application form that would have convinced them of his needs.

So there's another appeal process to start. I had no idea how much paperwork and hassle was involved in trying to get the appropriate care and making claims. Is it this way to put off the chancers and the scroungers? Surely they're the only ones with the stamina to see it through.

'Hello Twelve!'

For a few months now I've been counting the stairs as Tom and I climb them. Initially he would have nothing to do with the number four but has finally accepted that its deserving of a place (usually just after three but that's not a given).

Tom appears to be developing a semblance of understanding and seems to follow that there is 'one' and 'more than one', the latter described as 'one-two-three'. As far as the stairs go though, although he happily repeats the numbers as we climb and even says the next in the sequence, I know his grasp of their meaning is not quite there when he cheerfully greets the top step - 'Hello Twelve!'

What Next?

The moment the Eminent Surgeon came into the ward and told us that Tom's second implant operation had gone to plan has entered the list of 'critical moments' that have accumulated over the past five months. Almost immediately, the painfully tight, knotted muscles across my neck and shoulders that have been the main physical manifestation of my stress began to ease.

The second implant had come to mean so much to Nik and I in our striving to secure the best possible treatment for Tom. Along with caring for our son, the language therapy and the business of earning enough money to keep a roof over our heads, little else has occupied our thoughts for the longest time. Now it doesn't so what happens next?

Well, in descending order of importance:

Tom is recovering well from the operation. The swelling is slightly further back on his head than last time and so there has been far less distortion to his face.

Tom's vocabulary continues to grow at a tremendous rate and he's made that leap into talking about past events; more specifically, going for rides on Thomas the Tank Engine and a bus last Sunday.

'Tom-Tom in Thomas!', 'Diesel', 'Tom-Tom sat down in the bus!'.

Nik's extended leave from work is coming under closer scrutiny and the pressure to return soon, at least to some extent, is building. This has forced us to confront a number of issues that had seemed far enough in the future as to be safely ignored; namely, how much money do we need to live, where will said money come from and how will work be fitted around the seemingly endless appointments?

Add to that the age-old (well, last twenty years or so) dilemma about how prepared we are to let some of Tom's care be in someone else's hands now? The normal, protective feelings have been heightened at the exact time when Tom needs to mix more with his peers and begin to develop those all-important social interactions. Will the childminder talk to Tom as much as we do and in the right way (therapy does that to you!)?

Reading these last two paragraphs back elicits a wry smile - all the issues are the exact same ones we and all parents deal with from the moment junior first appears. We may have a few more appointments than the average and Tom's needs language-wise are more acute than they were but some semblance of normality has descended.

'All Done'

In Tom's words, we are 'All done'.

For the bionic ear cognoscenti this interprets as the implantation of a HiRes 90K device has been achieved in Tom's left side with full insertion of the electrode array into his cochlea. Minimal ossification was encountered and surgery was straightforward apart from 'a minor frisson' (surgeon's own words) at the basal turn.

For the rest... well it was the best it could possibly be. Our fears of a wide ranging spectrum of complications and possibilities of poor surgical outcomes that this may lead to have all, thus far, come to nothing.

We are home and, as I write, Tom is enjoying an extended lunchtime nap. He is now bilaterally implanted; one side 'belongs' to the NHS, the other is all bought and paid for thanks to the tear-inducing generosity of family, friends and complete strangers. In lieu of a more extended discourse on kindness and what you all mean to us, thank you.

Extracts from Tom's Diary

Monday

Went on an airplane - told everyone about it. Over and over.

Played with Joe. He's great. He's got lots of trains. I want them all.

Tuesday

Played with Joe some more. Went home for my tea. Didn't get his trains.

Wednesday

Went to this place with lots of smiley ladies. They stuck a needle in me. I cried. Alot. I like smiley ladies though.

Thursday

Went out in the car with Mummy and Daddy. Went a long way and found lots of people with stripey uniforms. They tried to hold me down and put me in this tunnel. I wasn't having it. I screamed. Mummy cried. Got lots of chocolate.

Sometimes I'm not sure about Mummy and Daddy.

Friday

Went out in the car to see Kim and Mark. They have lots of toys. They make funny noises and I look and everyone smiles.

I like the dancing cow best. And the dinosaur.

Saturday

...
Tom doesn't yet know that Saturday will involve another short car journey and more stripey uniforms. Tomorrow, at 6.30am, we're due at the QMC for Tom's second cochlear implantation. I'll explain more about how we got to this point another time (for it is a twisting tale within this longer odyssey). Briefly then, the week has featured:

• a vaccination for a bacterium that has already done its worst
• a developmental check that has shown that, in virtually every way bar his walking, he's up with his peers
• a farce of a CT scan in a private hospital -
  'He's two; he'll need to be sedated' we said.
  'Don't worry, we know what we're doing' they said.
  We went; he wouldn't keep still; the scans were next to useless; we weren't charged.
  Being right doesn't make you feel any better on the long drive home when you don't know the extent of ossification (if any) and whether surgery can go ahead.
• the eight week tuning session for his existing implant. The power was ramped up further; still Tom doesn't flinch. He continues to make excellent progress and learnt what a 'tanker' was in the car on the way home (me driving, him in the back seat - 'look, no lips')

After the tuning session we were given the news that the Eminent Surgeon is happy to go ahead with the operation and, if he thinks it's fine, then it's fine. In quieter moments I have been composing two lists - good health services and bad. The Eminent Surgeon sits with the privileged few.

The second bottle of wine may be opened tonight. Our journey to sleep needs assistance.

Are we through the tricky bit after this?

Tom does France

A somewhat intense Tom discovering the joys of French fountains

Holiday Anecdotes

We're just back from a two week holiday - never has stepping out of day-to-day life felt more needed. Here are a few Tom stories from the past two weeks.

• On arriving at the airport (still in his pyjamas) and passing into the departures lounge, Tom's discovery that 'airplanes' were real was a sight to behold. Glued to the window, he chanted 'Airplane!! Airplane, daddy, airplane' increasingly breathlessly, occasionally turning to check if I had perceived the miracle that is modern flight too. Indeed, the discovery that we were actually getting in the thing almost pushed him over the edge. I felt it an important public service to teach him 'wing', 'engine', 'tail' and 'cockpit' so that surrounding passengers would get a little variety during the flight.
• Nicky started her first 'I noticed you were looking at my son...' conversation with a particularly unsubtle French lady. This followed numerous quite bizarre incidents where people only a matter of yards away would peer round us to stare at Tom's implant. One may be tempted to think that the Unsubtle French Lady's confident assertion that 'we don't have them here' had some truth to it... except that we have a carefully collated list of French CI centres that we carried with us.
• Tom has never really seen the point of swimming pools. I'm not sure whether it was the temperature of the water, the communal changing or possibly the tense look on his mum's face but since being deafened things hadn't got any easier. We haven't mastered reassurance and safety instructions via signing so, once the implant is off, Tom is prone to cold feet that can't be soothed away.
  I tried to show him just how much fun could be had on the campsite's water slides (repeatedly) and, after numerous brief paddles spread over a number of days, we gave the gentle slide a whirl with Tom on my lap. After that, of course, there was no going back. The inertia and friction my bulk created insured that we never reached threatening speeds but I managed to create a big splash and ensure the full water slide experience was had.

Have we returned from holiday refreshed enough to deal with what this week is bringing? We shall soon see.

Pneumococcal Vaccine and another campaigning moment

We appeared in our local newspaper again yesterday. I'd written a stroppy letter to the editor following an earlier story and the Health Editor, Clare Boyd, had got back to me. She was keen to get the story straight but needed a new angle (that hackneyed 'Nasty PCT won't pay/postcode lottery thing wasn't going to make the cut again).

This led to 'Don't Gamble with this awful illness' - a full page story in the paper edition, complete with sidebar listing the symptoms and a large photo of Family Broekhuizen playing with the ubiquitous toy train. The story ties in with the launch on Monday of the Pneumococcal vaccine as part of the Vaccination Schedule for under-twos. Dad Jason Broekhuizen (36) comes over as a bit of a know-it-all but his heart is in the right place.

You don't want this illness happening to your kids, believe me.

Thinking about the couples with children I know, all of them have one parent who tends towards the 'it won't happen to us - look at the odds' when it comes to the category of experiences I will refer to obliquely as 'Bad Things'. I was that parent; I always thought that the balance my rationalised optimism provided to Nik's intuitive caution meant that, through the continual series of compromises and trade-offs that formulated our combined parenting approach, Tom would come out balanced and OK. Other children wouldn't have to be scrubbed and sprayed with DDT before being allowed in the house and we wouldn't let him juggle with scissors and bread knives until he was old enough to mop up the blood himself. So we went on until our luck ran out and were reminded that, just because there were long odds against something, it can still happen.

To finish up this broadcast promoting Pneumococcal Vaccine, I'll leave you with a quote from BBC Wales (and anyone else who's running a similar story this week)

Chief Medical Officer for Wales Dr Tony Jewell said: "We have already seen the immense impact this programme has had in the US. Since its introduction, infections in young children caused by the strains in the vaccine have fallen by 94%.

Moving On

As the Bard wrote:

Things without remedy, should be without regard; what is done, is done.

'Letting sleeping dogs lie', 'Not crying over spilt milk' and other such metaphors seem to be a recurrent theme at the moment. Nik and I have had a host of experiences and emotions that we've been encouraged to bundle up, stow away and move on from over the past few months. We are even inclined to gently present such suggestions to each other at times of stress. The stock response, spoken out loud or otherwise, is 'I know, I know but...'.

The biggie, of course, is Tom's meningitis and, more specifically, the two days he was ill prior to us getting him to A & E. That short time period, which Nik and I can recall with unwanted clarity, is ripe for dissection and initiates sessions of self-flagellation and tear-sodden recollection. We just weren't aware enough. The early symptoms of meningitis are so much like a host of other, less serious infections; most of which lie in the 'Doctor thinks I'm an over-protective parent' zone. The more commonly known rashes, stiff neck and aversion to light don't always appear in babies and young children and, if they do, may appear later in the illness when the prognosis is so much worse.

Parents, for your families sake, commit the symptoms to memory , trust your instincts and don't allow your fears to be played down by anyone.

Better still, take advantage of the (British) Government's belated inclusion of the pneumococcal vaccine in the new children's vaccination schedule from the 4th September. This vaccine has been available for six years in the USA and organisations such as the Meningitis Trust have been lobbying for its introduction here for some time. Why so long? Presumably the equation of number of deaths and permanent disabilities versus cost finally tipped the right way. Only now do 500 cases of pneumococcal infection and 50 deaths a year in the under two's cut it.

Just be thankful it doesn't depend on where you live too.

See, I told you I was moving on.

Wind the Bobbin Up

We walked back from the shops this weekend, buggy laden with everything bar the child it was designed for. He was busy running his hand over all the brickwork and other surfaces that lined the pavement
‘Bwick’
‘Edge’
‘Gate’
‘Door’
It was not a quick journey.

Part way home, Tom shifted verbal tack; he stopped babbling about what he was touching and started babbling about something else. It took a few moments to catch on (we’re not as quick at getting into his ‘thought bubble’ as Jacqueline would like – this is because Tom’s bubble is somewhat irregularly shaped and he seems prone to wild leaps of association) and then noticed the odd ‘clap clap clap’ punctuating his monologue.

Tom was singing to himself – ‘Wind the Bobbin Up’ is something of a Granny’s favourite, complete with actions – a habit he unsurprisingly lost touch with between meningitis and implant.

The devastation that you feel when grieving or experiencing tragedy has a painful and complex texture. There is the smothering, non-specific heaviness that blankets the everyday; the chinks of light that fall through flaws in the weave and offer a glimpse of what came before and what can only be hoped is ahead, and then there are the scratching, stabbing threads that remind of what has been taken away and, for me, are the hardest to bear.

The absence of Tom’s spontaneous bursts of confused song chafed until I wept. He had perfected ‘Baa baa, little star, ee-aye, ee-aye oooh’, seeing nothing wrong in segueing his favourite bits from several songs into a glorious remix. I missed that song so much. I would hear it through the baby monitor as he fell asleep, a gentle indicator that he was happy with his lot and was slipping into an easy, contented slumber.

And now he’s at it again. A (rare) quiet moment on a car journey may be punctuated by a ‘Rock, rock…’ (Tom’s instruction to sing ‘Row, row, row the boat’ – the verse with the crocodile is his favourite) and he’ll have a stab at the theme tunes to ‘Bob the Builder’ and ‘Postman Pat’. As tuneless as his parents but it matters not a jot – it makes us all stupidly, disproportionately happy.

So we joined in with Tom and treated Ruddington to a verse or two of

‘Wind the bobbin up,
wind the bobbin up,
pull, pull
clap clap clap’

The Broekhuizen Family Singers won’t be appearing near you any time soon but, if you happen down our street, we do requests.

Further Media Experiences

Until next Wednesday morning, you can listen to the dulcit tones of Karl Cooper, BBC Radio Nottingham's Breakfast Show Presenter, interviewing me on the BBC's radio player.

Select 'Listen Again' under the BBC Radio Nottingham header on http://www.bbc.co.uk/nottingham/ .

I've decided not to listen again myself for fear of dissecting myself out of existence. I'm sure the media-savvy amongst you will tell me where I went wrong - I think it comes down to the fact that I'm too bloody nice and somehow believe that if you explain everything, people will come round to your way of thinking. I answered the questions rather than making the points that needed to be made.

Rushcliffe PCT's statement contained the following:

Rushcliffe Primary Care Trust said it does not pay for bilateral implants as
the evidence for them is not strong.
In a statement, a spokesman added: "It
is essential that as many children as possible benefit from a unilateral implant
rather than fewer children receiving bilateral implants."

So here, belatedly, are the points I should've made instead of answering the questions I was asked:

• The PCT thinks there's too little evidence. This is an untenable position - all the papers being published and presented point to the astonishing success of bilateral implantation. If a hard-nosed US insurer such as Anthem/BCBS can be persuaded - this is their new policy on cochlear implants - then why are Rushcliffe PCT taking this stance?
• Unilateral implants are given to all patients who meet the criteria - that's the policy. Giving a child bilateral implants due to exceptional circumstances does not alter those criteria and, therefore, does not deny a child an implant. To present it in such a way is designed to make us look greedy.

I'm too well brought up. That must be it.

There then followed the piece in the Nottingham Evening Post. To save you the trouble of following the link for so short an article, I'll save you the trouble and republish it in its entirety.

CASH APPEAL FOR BOY'S OP
12:00 - 16 August 2006
The parents of a two-year-old boy are trying to raise £20,000 so he can have a vital hearing implant.

Jason and Nicky Broekhuizen, of Ruddington, say they need to raise the
cash quickly to prevent their son Thomas from going deaf.

His hearing went after he suffered meningitis four months ago.He had an implant in his right ear but his dad Jason says he needs a second implant in the other one.

Staggered.

For the record, we are not appealing for money; no such suggestion was made to the reporter. What was mentioned was all the key issues that I've become distinctly boring about on this blog.
And how can a sub-editor let through one inaccurate statement - '...need to raise the cash quickly to prevent their son going deaf' that is followed closely on the heels by the stunningly contradictory 'His hearing went after he suffered meningitis...'?

The machinations of the media remain a foreign world to me. The pieces on TV and Radio were intelligent and sympathetic; clearly the Evening Post didn't see this selling papers. Is it as simple as the fact that they were last to the table and so need to find a new hook?

In Other News...

Tom is still beautiful.

He now regards the illustrious audiological double act that is Kim and Mark as an entertaining diversion, what with their endless supply of cars and dancing cows. The mapping on his implant processor has been tinkered with after a month of activity to give Tom access to a greater range of decibels; as they cranked up the level he barely flickered an eyelid, soaking up the higher volumes with apparent ease.

To paraphrase the great Noddy Holder - 'Cum on Feel the Noize'

Tom's BBC moment

You know how it works - your Dad talks to a fellow churchgoer about his grandson's ongoing travails (PCT with shallow pockets, unruly bone growth in his ears, that sort of stuff) and it turns out that her husband is a reporter for the local BBC TV region. Phone numbers are exchanged and before you know it Tom is being shown how a big TV camera works while Nicky and I are being interviewed by Quentin Rayner (mention of whom to my mother and sister led to a conversation of a 'ooh, what's he like in real life? He's good he is' nature).

East Midlands Today regarded the story as important enough to lead with on their evening news yesterday, August 15th. The piece was fair; we were able to make some of the key points and Sue Archbold of the Ear Foundation drew attention to the iniquities that exist in bilateral provision across the country and further afield, and to the growing body of evidence supporting bilaterals.

Sadly, these points don't come across as strongly in the more permanent BBC website news article .

Given Tom's excessive cuteness (or the dearth of other news), it's hardly surprising that the media coverage has spun on from this TV item. As I write this its not yet 8.30 in the morning and we've had a family outing to BBC Radio Nottingham for a quick chat with Karl Cooper ('You're meeting Karl Cooper? Wow! Finally my eight year old nephew is impressed), host of the morning news show. Within five minutes of getting back a journalist from the Nottingham Evening Post appeared at the door - and getting lucky with our doorbell which only fulfils its job description intermittently.

So what will all this amount to? Given our recent experience with the PCT, I don't hold out much hope for a complete volte-face but if the iniquities in funding approaches across the country are held up for examination and the right people become more aware of the complex issues surrounding bilateral implantation then that can only be a good thing.

Alongside that, of course, is the self-examination and the nagging feeling that you didn't get all the points across with the time slots being so squeezed and the medical stuff so easily over-complicated.

Still, Tom certainly likes seeing himself on TV.

'Tom's choo-choo! Mummy! Daddy! The Man!'

Tom at Two

In this picture Tom is modelling the Advanced Bionics 'Clarion' device and a natty haircut courtesy of 'The Ruddy Chop', our marvellously monikered local barbers. The answer to the joke 'How many people does it take to cut Tom's hair' is four; two to hold him down, one to distract with blocks and one to perform 'guerilla hairdressing' - dive in, grab a lock and snip before the subject notices.

Two and Loving It

Tom is two now and his implant has been switched on for four weeks.

When Nicky shouts 'Jay!' up the stairs she has an echo. 'Ay!!!' yells Tom, just to make sure I've heard.

As he climbs up into his high chair or clambers down a step backwards, Tom says 'Care-ful', mimicking our cautious tone perfectly.

Tom's birthday party had something of an animal theme and since then he spots, and names, giraffes, elephants, lions, monkeys and zebras with glee. His monkey impression is something to behold and will get him out of scrapes for some time to come.

Target words for this week: 'Cement mixer', 'Dump truck' and 'Road roller'. I've not set myself much of a challenge there due to their proliferation in our house and the boy's singular obsession with all things wheeled.

The Flip Side

Tom is making this progress because of a number of key factors; all mentioned elsewhere in this blog and all worth reiterating.

• We are following the Auditory Verbal therapy path with the marvellous Jacqueline Stokes.
• Tom had, when he was deafened, a pretty good vocabulary for a 20 month old and his auditory memory was developed/strong/retentive enough to cling on to 130 words plus throughout his 'silent period' which was a mercifully short three months
• Tom is learning his language in the optimally quiet environment of home with two dedicated and slightly obsessive teachers.
• He's only two and his brain is still very plastic and able to cope with change
• Nottingham know what they're doing when it comes to mapping

With all this progress being made why do we continue to fight out PCT for funding?

• Because as soon as there's poor acoustics or any background noise, Tom doesn't hear a word
• Because Tom has to look all over the place to find out who's speaking
• Because the meningitis took away the hearing in two ears, not just one
• Because there have been a number of signs that ossification has begun and we've heard of a number of cases where the effectiveness of the implanted ear has declined with progressing ossification. The thought of Tom being plunged back into silence is too awful to contemplate for long.
• Because our PCT are out of step with the rest of the world - one of the biggest US insurers, BlueCross BlueShield policy now includes bilateral implantation, following on from recent developments as reported in the Times and A Tale of Two PCTs

Feel free to add to this list - I need to go and play with my son and not dwell on this too long. I can do without an ulcer just now.

Tom's Second Birthday

Over the past few months today has been a significant point of reference for me - a date in the near future to 'get to', to make the most of when, and if, we made it. It held dramatic connotations as landmark dates in the calendar do - as markers for progress or survival.

Our neighbours have a boy the same age as Tom. That isn't a rough approximation; the difference in age is one short night that Nicky had on the maternity ward before Linda was wheeled in to the opposite bed with baby Joe; future boy next door. One can probably imagine with little difficulty how significant our relative positions felt while Tom was ill; how painful the prospect of returning to our joined houses without him. Linda and Mark, and Joe in his busy toddler way, have been vital to our recovery in the way that empathetic friends can be.

In the dark days, when the extent of Tom's potential recovery was by no means certain, Mark talked about the boys playing together again.

'August', he announced. 'They'll be running round the garden together in time for their birthdays'.

It sounded optimistic and I was far from convinced given that, at the time, he could barely move one of his arms and couldn't yet support his head.

As it was, the gallivanting and frolicking in the garden got started in July. Although somewhat cautiously on Tom's part (he is still very uncomfortable on uneven ground and won't tackle inclines without dropping to his knees), Mark's prediction came true.

Yesterday was Tom's party. His 'wellness' is slowly losing its novelty and the level of his grandparents indulgence can almost be explained as normal. He needs a little in the way of extra attention, what with that pesky coil needing to be replaced with irritating frequency but there are a number of practised hands ready to help. Joe, obviously, doesn't go in for offering special consideration. For him Tom is that kid next door who gets all the cool stuff the day before he gets his share and he has to witness it with unreserved envy. That, for now, is fine; Tom can't possibly hang on to all the trains, diggers and Bob the Builder-oriented goodies at once and there's enough of a toy overspill to share.

An uplifting day. PCTs, second implants and therapies of one kind and another can all be put to one side for a day or two. I think we all deserve that break.

A Tale of Two PCTs

Yesterday (2nd August) this appeared in the Times:

Deaf toddler's parents win NHS battle
Hospital trust refused to pay for boy to have implants in both ears, then
relented after pressure
THE parents of a toddler who has become deaf in both ears were told by NHS
bosses that he could have the hearing restored in one ear, but not in both.
However, after The Times asked North Dorset Primary Care Trust (PCT) to
justify the decision, it relented and agreed to operate on both ears. The trust
denied that the call from The Times had any influence on the decision, which it
says it had been considering carefully for some time.

Later the same day we received a letter from our PCT informing us they were 'not willing to provide funding for a second cochlear implant for Tom'.

We had gone into the Appeal Panel meeting on Tuesday afternoon desperately trying to be hopeful of a positive outcome. We had opted to present our case in person rather than submit a written appeal - having felt the level of helplessness that comes with sitting by a comatose child's bed, the more involved in the process we were the better, however painful it may prove to be.

We practised and honed the presentation, covering what we regarded as all the salient points:

• the research on bilateral implants published thus far
• ongoing research reported at International Conferences,
• pertinent research regarding deafness and education, mental health and work
• the international perspective
• exceptional circumstances relating to Tom (bearing in mind he is post-meningitic, under two and had language prior to his deafness)
• testimony from bilaterally implanted children and their parents

We delivered it with the level of competence you'd hope for from an ex-teacher and a project manager. We even managed to control the waver in our voices when we touched on the more personal, emotive issues.

And, quite frankly, the whole effort was futile.

My dad, who came to drive the keyboard and whose support has been immeasurable throughout, came away thinking we had hope. I had to admire his optimism in the face of such evidence to the contrary. What I assumed, quite wrongly, to be a question and answer session to clarify our case was, in reality, an extended explanation of why they were going to turn us down. My feeling is that the panel had, to varying degrees, made up their minds long before we appeared.

PCTs can't have a blanket policy - there has to be wriggle room where 'exceptional circumstances' allow for independent decisions. Well, there has to be the appearance of it anyway; the pot is only so big as we were told in ever more imaginative ways ('we're not dumb, we understand!!' I wanted to shout) 'you know those other PCTs/countries who believe the research and stuff, well they've got more than we have...'

I tried to explain that, as much as we'd like to, we didn't have the time or the money to move to Scotland, Camden, Barnet, Norway, Iceland, Spain, Austria, Germany....or possibly North Dorset.

They may have smiled ruefully; I don't know, I was on my way out of the door.