Thursday, September 28, 2006

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.

Sunday, September 24, 2006

'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.

Friday, September 22, 2006

Extracts from Tom's Diary


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.


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


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


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.


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.


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?

Thursday, September 21, 2006

Tom does France

A somewhat intense Tom discovering the joys of French fountains

Wednesday, September 20, 2006

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.