Wednesday, 27 January 2016

once upon a time...#special needs child

I probably should have started with this...this is the shortened and abridged version of our story....
are you sitting comfortably???
Then I'll begin....

Once upon a time there was a mummy and a daddy who lived very happily, if a little noisily, with their three young children. They were all very excited because the three would soon become four young children.
One day in October, in the early hours of a Monday morning, the baby decided he was going to arrive, two weeks early. The emergency friend came in her pyjamas to be there for the three and daddy took mummy to the nearby little cottage hospital. After 55 minutes from first tweak, the baby boy was born.

And so began the nightmarish adventure....he was no straightforward fellow, he. He had a large and significant cleft lip and palate and was clearly an unhappy boy.  The little (or in fact, quite large ) chap was whisked away in his own ambulance to the nearest large hospital with a Special Care baby Unit some 15 miles away.  Mummy followed soon afterwards in her own ambulance which had to keep stopping to let the mummy be sick!
Mummy and baby were reunited in a small room full of teeny tiny babies all attached to tubes and monitors. The little boy was soon also attached to his own special set of monitors and tubes but he looked SO big compared with all the others.  The days which followed were a haze of medical people, coming and going. Mummy stayed in the hospital but daddy had to go home and look after the Three. Wave after wave of medical person came to see mummy..and the news which they brought got more and more difficult.
It turned out that Jboy (for obviously that is who it is) was not going to be straightforward in any way!
After he had been stabilised and was deemed fit, Jboy came home. I (yes, I am that mummy) couldn't feed him as he couldn't suck so I spent my days pumping for England(well for Jboy), then squeezing it into his mouth with a special bottle..feeding would take about an hour...he fed every two hours..and inbetween I had to look after the very marvellous Three, and keep the house from falling into rack and ruin around us.  After we had been home for two weeks, I was changing Jboy's nappy when he stopped breathing. I jiggled him about and he started again (we later learned about resus but at that point I had no idea). Grannie was here to meet her newest grandchild..so we left her in charge of the excellent Three and rushed into hospital...where, to cut a long story very short, Jboy stayed for two months. During that time he stopped breathing on numerous occasions, his heartbeat stopped and he was a very poorly little chap. He lost a lot of weight, despite the mummy milk being fed to him by way of an NG tube and developed eczema as he was allergic to the sheets on the hospital cot. (Incidentally we had a rather nasty moment with the NG tube and an inexperienced nurse who had threaded it into his lungs by mistake and it was only because I sensed something was wrong and refused to let her feed him until a senior nurse had checked that we avoided having a baby with a lungful of milk)
He came home just before his first Christmas. Yay!!!!
 He had his lip mended in the January and his cleft in the following May.

As life went on and the marvellous Three continued to be marvellous, it became apparent that Jboy wasn't just in need of medicinal help (I have missed out a chunk of stuff but he was now on heart meds, cortisol and had had testosterone injected into his little bottom) but as developmental milestone after milestone were missed, it was obvious that he also had a considerable developmental delay.  So the great wheels of the developmental support machine began to whirr. 
By the time he was 1, we had appointments of some sort every  week..sometimes more than once a week. He had a paediatrician, the plastic surgeon, a geneticist, a cardiologist, the endocrinologist(hormone doctor),an ENT doctor and associated VI  and HI specialists, the Opthalmic doctor (forgotten the proper name for that), the Orthopaedic department,the speech therapist, the physiotherapist and the occupational therapist. At one point we had over 20 professionals involved in Jboy's little life....I seem to have mislaid a few here.

And so that is how our lives have progressed....appointments have dwindled now as his heart has settled ,he doesn't need any more plastic surgery, his hormones have stabilised etc etc etc.
The first few months of Jboy's life were the steepest learning curve we have ever had to take. Without our wonderful Three being so wonderful, without the arrival of delightful Dancing girl some years later and without our splendid supportive friends,we would have sunk beneath the weight of it all.

So now, grown up, moustachioed, muscly and much more ,our man-boy continues to flavour our lives with sweetness and sometimes the not so sweet!

Marvellous
The End