Sports Day

I must admit to not being fully prepared for Tom's Nursery Sports Day. It was only a matter of hours before its start that I even considered going but thank goodness I did. I could dress this post up in so many ways and the sports day would serve up the necessary material in spades.

Firstly, and most personally, the hour-long burst of races was a testament to the incredible progress that Tom has made in terms of his balance and mobility since the meningitis. His running stride is elegant and, to my only-slightly-trained-eye, straight and true. For evidence, I submit the following:

These two pictures were taken during the final race which, according to the program, was the 'Let's have a drink in the garden... but watch out for the bees and wasps!! race'. Which leads me neatly on to the second subplot - the event was devised by a comedy genius - or geniuses - who had come up with a series of eight races. Under the theme 'Gardener's World', each race had a subtle twist designed, presumably, to keep the interest of three and four year olds. In keeping with your average Pixar production, this had the possibly inadvertent effect of also making adults howl with laughter.

The first race set the stage perfectly - the 'You need to get a big bag of compost home from Asda' race (US translation: Asda is a proud member of the Walmart family) saw half a dozen earnest kiddies in pushalong cars grinding their way down a 50 yard track with, seemingly full bags of compost strapped to their roofs. Aaah heck, you need to see it...
Note the stockcar style being adopted by some of the drivers - it really needed to be seen to be believed. Little legs sticking out of the bottom of the cars, going ten to the dozen and going nowhere fast.

Every race had a new twist... 'Now collect your plant pots in your wheelbarrow' needs little explanation. Nor does the 'Your plant needs water to help them grow... you will need your watering can' race. Suffice it to say, it kept us all highly amused and utterly refreshed by the lack of guile or competitiveness on show. I lost count of the number of times that the leader, streaking ahead and only yards from the line, stopped and waited for a friend. One little boy, in the 'Time to cut the grass... again... can you mow in a straight line?' race, flew in the face of convention and worked his way across the track in neat strips, turning neatly at each side just as he'd seen his daddy do.

I had time to enjoy that... seeing as Tom had creamed everyone in that race.

Did I say it wasn't competitive?

Please note the 'Tongue of Concentration'.

Given that the week to come is the last for Tom at this school, sports day was a sweet finale to his first school experience. All fears about how he would cope in a mainstream environment have been dispelled. While supported well by the school, he has needed less and less individual or special attention as the term has worn on and will excel in mainstream education.

So thank you James Peacock School, Ruddington. We will miss you.

2 ears 2 hear

I made contact with Charles Arthur soon after Tom came out of hospital - his son had a cochlear implant around the same time as Tom and it is great to read about the progress he's making. Charles' wife Jojo Moyes has written a piece for The Daily Mail supplement that is well worth reading - 'How Lockie broke through a wall of silence'. I hope you don't find the paragraph that follows the piece too alarming - I'm not sure about the relevance of the 'downstairs security check'.

On a slightly more self indulgent note, I've been contributing to getting a website off the ground that may be of interest to cochlear implant watchers. Hatched last summer as an attempt to get a few things out in the public domain about bilateral implants in time for the outcome of the NICE evaluation, 2 ears 2 hear has been launched. Written in conjunction with another parent of an implanted child, the website has a number of intentions: to support parents in their efforts to get what is best for their children from their PCTs, raising the profile of the issues surrounding bilateral cochlear implantation and to put some pressure on decision makers in the run up to the final publication of the NICE recommendations.

NICE kind of beat us to it with the publication of their draft recommendations last month but there is still a few months to go before the final report. As I've written before, if these recommendations had been in place when Tom was deafened, he would have qualified under two out of the three published criteria. We believe these recommendations don't go far enough. With them as they stand there is tacit acknowledgment that two implants are better than one but the additional cost of the second operation appears to tip the cost-effectiveness balance along with the gradual decline in likely effectiveness that is associated with failing to stimulate the auditory nerve.


Tomwatch update

Two weeks in and nursery school is still pretty appealing. We have had our first taste of on outcome of parenting a school age child - we only know as much as Tom is prepared to tell us... and that is highly variable. And often seems to deviate from reality.

A recent visit from the physiotherapist confirmed what we were suspecting - Tom is making excellent progress. He is far more stable and physically adept in terms of his gross motor movements (hark at the scientific terms) and becoming gradually more confident with a range of activities. The question I always ask is 'how far can he go?' and, like most of the questions we ask to professionals, it is met with a much qualified, carefully phrased 'don't know'.

What can be said though, and this saddens me however frequently it needs mentioning, is that Tom would be making far less progress if we had taken the NHS approach and accepted well enough.

National Healthcare (abridged)

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

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

There's scab number one right there.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Easter - the aftermath

The washing machine is grinding to a halt after its fourth run of the day; the toy Dyson lies where it was abandoned on the rug; a rapidly deflating McDonalds balloon bumps limply across the floor at the slightest breeze and Tom, not before time, sleeps soundly in 'the racing car bed'. The house is quiet and the Easter Holiday weekend is at an end. The tornado that is the Family Smith has passed on and we can rest again.

I make it sound more dramatic than it was; these old university friends of mine and their three delightful children were no different to any family of five wired on a heady cocktail of Fanta and their youngest's body weight in chocolate. And Tom adored them. He followed the older ones round, he directed questions to them and understood what they said back. Tom laughed with Ellis and Rhianna and, as part of a joint project with the latter that will be worth a couple of credits in delinquent school, coated much of the shed in chalk. He chased and was pursued; he tickled and guffawed and generally had a ball.

And so did we.

The weekend was exceptional merely in its ordinariness, the sort of weekend families have together, and it couldn't have come at a better time for us. So, in the style of all the therapy sessions we subject Tom and ourselves to, here are our 'take home messages' from the weekend.

1. The house of the Golden Arches is a perfectly acceptable, nay ideal, restaurant of choice for an Easter Sunday lunch with four under-10s.
2. An hour-and-a-half long bedtime tantrum is par for the course and not, as nagging voices in the backs of minds will have it, in any way exacerbated by Tom's deafness. It's exacerbated by chocolate.
3. Staying off the topic of work isn't always the best course of action on holiday weekends, particularly not when one of said friends is an Occupational Therapist who, in a few short minutes, came up with some excellent suggestions for helping Tom with his still-slightly-suspect balance. Tom was discharged with unseemly haste from the out-patient physiotherapy and while I don't doubt there are far more needy cases in their long, long waiting list, this experience sits in the 'not good' half of our NHS experiences pros and cons list.
   

So there you go Smiths - there's your mention. You are deserving of so much more though - this weekend has been a much needed shot in the arm for us all. Thanks.