The decision that never was

I was early to my desk yesterday morning, fingers hovering over the keyboard ready to pound out a fuming diatribe about the Healthcare Commission, PCTs and all the usual Dark Forces that are lined up against us. I made a few false starts... a few sentences about a phone call that told me little that I hadn't already suspected... but I kept deleting them. I just wasn't angry enough. I'd prepared myself too well for the expected disappointment.

As it was the phone call didn't even bring the anticipated rejection; it was actually to tell us that the review proper was just about to start and that what was being examined was the process rather than the decision - which I kinda knew. That the process involved flawed thinking, erroneous interpretation of data, ignorance of the facts and dismissal of expert opinion is, I would hope, where there is thin glimmer of hope. I suspect, however, that the PCT are going to get marks for effort - they did try to think, after all... and they collected some data and expert opinion which, although the interpretation flew in the face of national trends, accumulating evidence (check out PubMed folks) and said opinion was still, erm, done.

So I didn't get round to this post yesterday. Just as I was building up a head of steam a sleepy smiling face appeared in a bedroom doorway and I got distracted. A few cuddles cheered me up, as did Tom's running commentary that flowed uninterrupted through getting dressed, washed and out of the house.

It still sucks that our PCT is broke. It still sucks that we have to be among the few pioneers who discover all the bizarre quirks that accompany life as a part-NHS, part privately funded implant family. What doesn't suck at all is the jabbering fruit loop that is Tom.

At a slight tangent - but this is where my thoughts led so let's go with it - the whole jabbering offspring thing made me think of Schuyler and her Monster. Rob relays his morning's TV viewing when he heard a mother complaining about a child reading and talking too much... you can't make it up. Perspective is an interesting thing - particularly when kids are involved.

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?

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.