Seminar Postscript

I wasn't the only parent speaking at the Ear Foundation on Tuesday and, on re-reading my last entry, I feel its important to give them a mention as they, like us, never gave up even when those who support bilateral implantation were saying it was too late.

Tricia Kemp, southern coordinator of CICS spoke passionately and incredibly eloquently about her son who, born deaf, didn't receive his second implant until he was 18 and is benefitting. Aside from the bilateral dimension, Tricia's son's story is particularly thought-provoking. They sought an implant when they weren't offered in the UK and had to travel to Germany in 1991 amid incredibly negative reactions from professionals. We have made some progress in this field then...

Another Mum, Annie Wilson, had brought along a video of her 11 year old explaining for himself how his second implant, carried out only a year or two ago, is helping him. It was very touching and unfortunate that the conference as a whole didn't get to see it. Maybe she'll post it on Vimeo (the thinking person's smut-free alternative to Youtube)?

Tom's story is short and relatively painless compared to some. We never use the word 'lucky' to describe our situation - but on the big scale of unfortunate-stuff-that-happens-too-often, maybe we did OK.

Notes from a Seminar

The Ear Foundation held a major seminar on Tuesday (6th March) - 'Bilateral Implantation: Two implants - always better than one?'. The agenda was littered with speakers who are big names in the field of cochlear implantation and audiological research, not just in the UK but across Europe and America. Somewhere down near the bottom of that list, representing a parent's take on all things bilateral, was me. Seeing as we live a stone's throw from the Ear Foundation and Tom is one of the few bilaterally implanted kids in the country (apparently there were around 50 this time last year so it's safe to say there's still well under 100) such opportunities are bound to crop up.

It was a fascinating day; if you ever get the chance, and have an interest in the scientific dimensions of cochlear implantation, then listen out for Rich Tyler (here's a recent lecture), Gerry O'Donoghue (another lecture) and Paul Govaerts to name but a few.

I didn't, however, spend the whole day with my jaw hanging at the sheer cleverness of this cochlear implant stuff. I've moved on from that; after all, Tom is living proof that it is a phenomenal technology that can change lives. We've been waiting for the literature to catch up. More important were several inter-related issues that surfaced during the course of the day... things that place our recent history into stark perspective.

Whichever way you look at it, there is now more than enough evidence of the published, quantifying scientific kind that bilateral cochlear implants work and add considerable benefit to those who aren't assisted by hearing aid. Some of it, admittedly, has emerged since the request for bilaterals for Tom was turned down back in June 2006 but, largely speaking the professionals have known for plenty long enough. There is also a mountain of anecdotal evidence that describes how binaural hearing (hearing in both ears whether it be a mixture of hearing aid and implant or just implants) enriches people's lives by placing them back into the world of sound in a way that unilateral hearing can't match and that is very difficult to quantify.

Essentially, you will struggle to find anyone working in the field who doesn't feel that bilateral implantation, particularly for young children with their years of language development ahead of them, would enhance the quality of recipient's lives in a deeply profound way. One of the key messages from the conference is that's a given and the earlier the better.

So, as there doesn't seem to be much dispute about the value of bilateral implantation, discussions touched on the thorny realities of public sector funding and the ongoing NICE appraisal. It was at these junctures that things got heated, and rightly so.

The position that has been taken by funding bodies in this country - using the lack of research evidence (of which there isn't really a lack) as a convenient scapegoat for not providing for bilateral implantation - is increasingly untenable. It has always been a disgraceful head-in-sand position anyway; it doesn't take a medical genius to see that cost is the only deciding factor. To pretend otherwise is deceitful and one of a number of ways of infuriating the average parent. Never was it suggested that Tom only wear one hearing aid during the period before implantation and, as Mark Lutman mentioned during yesterday's conference, there is little scientific evidence to back up the provision of two hearing aids as opposed to one. So why were we furnished with two? Because gut feeling tells everyone that aiding both sides is best of course.

The seminar reached its emotional peak when the vice-chair of the British Cochlear Implant Group (BCIG) fielded questions on her presentation; essentially a report of the findings of last year's survey of bilateral provision across this country's 22 cochlear implant programmes. What her results suggested was that there were huge discrepancies in not only bilateral provision across the country but also between implant programme's attitudes. There were few statistics presented; we mainly saw examples of the answers given by the respondents. While it isn't surprising that there are differences of opinion and approach across the country, what alarmed was the tone, particularly when it came to funding.

At Tom's appeal one of the panel asked me a question along the following lines - 'If you had two deaf children and two implants, as their parent how would you choose to share them out?'. This guilt-laying approach, possibly designed to appeal to my liberal social conscience, completely misses the point in terms of how the medical profession should be addressing this issue but is indicative of the way the Health Service works itself. The Implant Programmes are presented with the same choices by funders; for every bilateral someone else misses out on one. Keep asking and we'll take the funding away altogether.

The BCIG vice-chair concluded by outlining the recommendations they were proposing to make to NICE. Their policy statement proposed a list of who should get bilateral implants:

• patients following meningitis/ossification
• in case of additional sensory handicap
• where there is a loss in performance or device function in the first ear
• for participation in research studies.

Essentially the BCIG were preparing to take an incredibly conservative line when the research and the conference was screaming for something much more far-reaching. With the window of opportunity for language development so small, more and more research is indicating that the greatest benefit is gained from both auditory nerves being stimulated at as young an age as possible. All deaf children who gain no benefit from hearing aids should be offered bilateral implants. The longer there is procrastination the more children will miss out.

The contrast with practice in many other countries is stark. A surgeon from Sweden spoke about how bilateral implantation for profoundly deaf children is standard. It took a fight, by parents and the Implant Centres, but they were prepared to fight. With the group who represent the Implant Programmes only offering watered down recommendations, it would seem that we're not up for that sort of fight in the UK. Why?

Is it something to do with how we think about children in this country?

Men and Motors

Tom and Nik found themselves in the magazine aisle of one of our local supermarkets over the weekend. He was offered a choice of comics as a treat for being just so darn cute. His Mum tried to steer him to this:

He was having none of it - and, frankly, I can see why. Justin and Sarah-Jane have always made me nervous while Stephanie... she's just a little too fast for my liking.

So after a little tooing and frowing he came home with this highly commendable pre-school reading:
It wasn't his first choice mind; he had his eyes set on something far more glossy from the high end of the automotive press range.

I'm thinking - forget saving for college fees; what our boy needs is a downpayment on a lockup under some disused railway arches and he'll be set for life. The motor trade for you son (pronounced 'saaaaan' in my best East End) - do your learning in the university of life.

Progress continues - we've got the scores to prove it!

So it's over seven months now since Tom's first implant was switched on and six months since his language was first assessed using the 'Preschool Language Scales-3' (the UK version - the link points to an explanation of the US original).

The idea is that a child's understanding and use of spoken language is evaluated and then compared to a scale derived from a large sample of children aged from birth to just under seven with typical hearing. The results produced give an 'age equivalent' score, comparing Tom to the sample group, for both Auditory Comprehension (does he understand what has been said to him) and Expressive Communication (the quality of the language he uses).

So... how's he doing? Well he's scoring right in the average range for children of his age with typical hearing (and you'll understand why I emphasise that a second time). His 'Age Equivalence Score' puts him at 2 years 7 months; he's actually 2 years 6 months - our boy's ahead! (all dependent on standard deviations and confidence limits of course - I did listen in Stats class).

Proud? You bet. I'm not going to tire of expressing just how marvellous these implants are and what they have done for Tom's life. Charles Arthur, tacking a similar course at more or less the same speed, would hasten to agree. In his latest entry he talks about baby3's remarkable progress with his Advanced Bionics implant after being born profoundly deaf. Interestingly, he's also ruminating on the pursuit of bilaterals - a pathway fraught with no small amount of tension but, ultimately, great rewards.

Its impossible to compare the progress of kids with implants against each other in any meaningful way; different start points, different aetiologies and so many different language experiences post-operatively. This is, of course, why it is tricky to quantify the benefits of bilateral implantation for any given individual - there are just too many factors having an impact on language development - and why any attempt to measure what added benefits Tom's second implant have had over the first is on shaky scientific ground. We're confident it has but the counter-argument goes, he was 'lucky' enough to have had hearing for 20 months before meningitis and was implanted very shortly afterwards. What portion of his success is due to these factors rather than the second implant?

There is no meaningful way of comparing the period with one implant with the bilateral state, not at the age he is. We just see the benefits every day - the way he picks up language almost incidentally, his ever-improving localisation - the 'normalisation' that has occurred. All the considered arguments that appear in scientific publications (and that I described during a bit of a week last July) are being borne out. But then, we had to pay to find that out.

Which is where the PCTs, with their ever-present cash shortages and demands to save money, come in. I wonder which way yours will jump should you ask them, Charles?

'Tomness'

With grandparents living near and far (and when I say far, I mean 'other country' far), the pressure to film Tom (and travel to and fro) is fairly high. We forget quite lot (the filming I mean, not the travelling - we're good at remembering to do that) and Tom isn't really one for cooperating. The moment the camera comes on he usually does one of three things:

• clams up
• grabs the camera or
• demands to see himself on playback.

One has to wait until he's absorbed completely in something else, like admiring his new bed for the first time for example, to capture his essential 'Tomness' - that or film him secretly as they do at AV UK.

Anyways, although this clip doesn't feature a great deal of Tom talking (you'll have to take it from me that he had been shouting incessantly about 'airplanes', tractors, mountains and heaven knows what since arriving at the airport) it does capture something of his character and demonstrates, for any movie directors out there looking for a cute kid with cochlear implants to star in your next blockbuster, that he can take direction.

It also involves me experimenting with a bit of background music, stupid titles and credits. For grandparents and other relatives I am hoping this will be seen as 'cute' rather than overly schmaltzy. Anyone else who happens on this, forgive me.

And, on reflection, he's over three feet high. Damn.

Two Feet High and Smiling on Vimeo

Tom's new bed

We took delivery of Tom's new bed last weekend. It lay in pieces on the landing all week - plenty long enough for Tom to identify that it bore more than a passing resemblance to a racing car and that it needed making and soon.

The morning and evening discussions this week have all featured Tom's express wish that 'Daddy make the racing car soon'. By Thursday Tom had added the impatient exhortation 'Come on daddy!'

I screwed it all together on Friday and the duvet cover that arrived midweek provided the finishing touch. The video below shows Tom's reaction to the discovery of the bed.



Tom's New Bed on Vimeo

We didn't hear from him at all this morning - about 9am we decided that we ought to see if he had any intention of getting up. To say he was happy to go to bed this evening is taking understatements about as far as they dare go.

A successful transition to a bed? I think so.

Garry Tractor

Yesterday evening I stood Tom on the front windowsill to watch Mummy drive away.

'Mummy won't be long. She's going to see the chiropractor' I said, by way of explanation.

Pause. Thoughtful gaze out of the window.

'There's a bus!!' Tom shrieked excitedly.

More thoughtful pausing.

'Mummy gone to see Garry Tractor. In the field!'

The obsession with all things vehicular runs deep. I love the fact that he doesn't question why Mummy would be going to a field at 6pm to see a tractor. That's what he would do if we'd only let him out of the darned house!

Otoscopes and Electrodes

Another day, another appointment - this time with the Eminent Surgeon who implanted both of Tom's CIs. It was a routine follow up, well as routine as such things are when we're talking about sophisticated electronics embedded into children's skulls. Any examination amounted to little more than a peer into the ear canal using his otoscope.

Tom decided that, for reasons best kept to himself, he would deign to allow the surgeon to stick this rather odd object in his ear. Whether this is a sign of his burgeoning maturity (he is, after all, two and a half now) or simply resignation to the inevitable I don't know. What does appear to help though is one of the most useful tips we've received. It is also one of the most blindingly obvious, forehead-slapping-while-exclaiming-'Of-course!' pieces of advice that has come our way too. It is that straightforward that I feel very dumb admitting that I actually needed it spelling out for me but, hey, I have a number of excuses lined up.

To make our life much, much easier we take time to tell Tom 'the plan'. No point in hiding the stuff he's going to dislike and springing it on him at the last minute (we tried that - Tom thinks that sucks), we share the bad news and also tell him the good bit that comes after. So, in this case, we told Tom that we were going to see Mr Gibbin who was going to look in his ears. He then repeated this back to us for the next 30 minutes at 10 second intervals, occasionally pondering whether this would involve going in daddy's noisy car and why we were seeing Mr Gibbin at Tracey's house ('Tracey's house' being the Implant Centre where Tracey, one of our audiologists, works).

In the grand scheme of nasty treatments that Tom's been through, having an otoscope delicately placed in his ear canal is small beer. He still made the Eminent Surgeon, a man not lacking in gravitas, examine the ears of Lightning McQueen, Sally and Ramone before his own. Now that was funny.

What wasn't so humorous was the confirmation that one of the electrodes in Tom's left implant needed to be switched off. The audiologists identified atypical impedence readings which have finally been diagnosed as a short circuit. Demonstrating his uncanny knack of being at the wrong end of long odds, Tom is only the third person out of 2000 implanted to have this happen with the Advanced Bionics device.

The upshot? Well, there's been no dropping off in the pace of Tom's language development and he still chooses to ignore us when he feels it appropriate. The redundancy built in to the device is designed to cope with such occurrences and, with improvements such as the Harmony System now released, there isn't much cause for alarm. As long as this isn't the start of something.

The appointment's most memorable moment, however, was so enormously positive that it left the electrode news deep in the shade. While watching Tom bounce around and talk incessantly to Nik and I we overheard the Eminent Surgeon say, in an aside to his registrar, 'You just can't tell he's deaf!'.

That is what he, and this technology, have done for our son.

Visiting the bank

So we were in the bank. We'd brought along a portable DVD player to distract Tom and he'd settled down on the floor to watch 'Cars' for the 52nd time, occasionally kicking the bank advisor's shins absent-mindledly when things got exciting.

As is fairly typical, particularly when you're fairly confident about what happens next on screen, Tom's mind seemed to wander. On those rare occasions when he watches TV (!!!) he is wont to make thoughtful requests as random desires come over him. Musings in the past have led to 'Chocolate' or 'Cake'. In the bank however, his mind went elsewhere. He stood up, raised his chin slightly in my direction and asked 'Daddy get bogey'.

Something of an icebreaker don't you think? Clearly it would have had more effect (and made a better story) if he'd asked the bank advisor guy to remove said bogey.

What I should have said rather than the slightly middle class 'shh.. not just now'? 'Ask mummy, she's got much longer nails'.

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.