Friday, 25 January 2013

The Sweet, Sweet Taste of Persistence

After nine long years of being fed by a naso-gastric tube, (a world-record in paediatric medicine I'd bet) this week we start the long process of weaning Boy Wonder off his feeding tube.

I can't quite believe I am about to write this post! The whole raison d’être of this blog seems to finally be materialising before my very eyes. Like every 'normal' milestone we have met along the way, this one too threatens to overwhelm me by the sheer beauty of it's very bland, quotidian nature. At the risk of becoming a complete cliché; I do have to repeat that for me the wonder has been in the ordinary - when you live outside of 'normal' the chink is never too wide, so the wonder rushes in when you least expect it.

We have seen 'ologists, we've seen specialists, we've tried bribery, pleading, protests, threats and every other trick in our parenting arsenal; all have failed. I stopped trying to push the agenda about two years ago, realising then that my Boy was blessed with a will of steel; even my legendary pig-headedness was no match for this young man who had confounded all odds. I put myself in his shoes and thought what's in it for him? Food is terrifying, he has never learnt to eat, he has never known hunger suffering as he did from hormonal anorexia, due to his lack of kidneys. Even when transplanted with his Dad's  second hand cast off, although he felt hunger - he didn't know what it was nor what to do about it.  The most basic human driving force was unknown to him. The dilemma was how to teach it if he refused, through sheer abject terror, to put food in his mouth.

This was a major brick wall for his parents, we both come from a long line of great eaters on both sides - in other words we love our food. Personally I love thinking about it, talking about it, cooking it and more recently I've taken to growing it - all in the hope of waking up this food gene that Mr Mendel swore to me through school biology texts he should have inherited.

Thanks to the work of many great people not least a gifted Special Needs Assistant at school, Boy Wonder will now eat small amounts of puréed food which we then supplement with 800ml of complete nutrition formula via feeding pump overnight.  We have been working steadily over the last five years with an American Oral Motor Specialist to try to break down his oral aversion. Finally a Skype conference with her last week proved so successful that she set our weaning plan in motion.

This week he has reduced his overnight intake by 100 ml and guess what? He's hungry and he knows it.

And now starts another miracle on our road to three meals a day, watch this space ...