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!'