Saturday, 29 May 2010

Late and Lame

The HSE have now confirmed the shocking total of 37 children who have died while in the care of the state, 18 of whom died of 'unnatural causes'. We wonder how this can happen and why nobody has been talking about it. Let me give you a little insight into why these appalling statistics do not surprise me.

As you all are sick of hearing - in July 2008 boy wonder was referred to a speech therapist employed by Enable Ireland; a HSE funded organisation charged with the care of children with a physical disability. In the words of the Attorney General of the State of California, this particular therapist was ' a threat to public safety'. The Children First officer charged with the implementation of child protection guidelines within the HSE West issued a report in September 2008 stating that by referring my child to this therapist, Enable Ireland were in breach of these guidelines. It is almost two years since that report - and almost a year since I had my son's services transferred to another service provider. In all that time I had no contact from Enable Ireland, until a letter arrived last week from the medical director who is a consultant paediatrician.

This is what it said:

I would be very pleased to discuss Rory with you at a time that is convenient.

I know that you had a number of concerns about Rory and the Enable Ireland services and would wish to address these with you.

Best Wishes etc etc.

Two years after such a serious incident I get this kind of nonsensical response. And the icing on the cake: both my name and address were written incorrectly.

Now tell me, would you bother meeting a muppet like this?


Wednesday, 19 May 2010

More Munchies Mr. Mozart

Rory's been on a steady diet of Mozart and solid food lately. Yes, your eyes do not deceive you, I said solid food, well incredibly mushy, puréed solid food, but food to be ingested by the mouth, so technically it's solid OK? Are these connected I hear you ask, who knows? They have certainly coincided and we have noticed Mr. Mozart working more than mere musical magic with boy wonder in the past so draw your own conclusions.

So here's the deal, boy wonder recently completed a three-week intensive listening therapy programme with an amazing speech therapist who worked with him some years ago when he was known as tiny tot wonder. At that stage he was still sans kidney and hadn't even learned to walk, but he was covering some ground at high speed on his be-nappied rear end - leaving miles of high gloss shining floors in his wake. We even considered hiring him out to contract cleaning companies such were the lean-mean-polishing-machine like characteristics of his developmentally-delayed derrière.

But I digress, he was well shy of the 10kg body weight required to even be considered for a transplant and since he had no urine output his intake was severely restricted to 450ml per day. A mere 'wee dram' in drinking terms. We were desperate to get him to eat so we could beef him up with some solid calories. A course of Therapeutic Listening was prescribed - it sounded non-invasive and pleasant and well, we were running out of options so we gave it a try. The effects were astonishing; within weeks he had been weened off his anti-hypertension medication and was as mellow as a Californian surf dude on a sunny day.

We had tried to do the intensive LIFT programme a few times since the transplant but there was always some impediment, a tummy bug, a hospital admission or just general meltdown.So, by a series of serendipitous encounters, all far too complicated to go into, we found ourselves at the Listening Therapy Centre in Galway in mid-April.It was one of those extraordinary cases of the very right place at the very right time. Rory had two hours of Mozart five days a week for three weeks, during which time, with the supervision of our Temple St dietitian we cut back on his liquid calories.

At this time he was eating a Petit Filou yogurt daily at school but still refusing point-blank to open his mouth for food at home. The listening therapist felt it would be imperative to widen the range of locations in which he agreed to eat, home being the last mountain to climb. Within two days, he was eating during his therapy sessions and by the end of the first week aided by bare-faced bribery and without too much protest he tasted food at home.

We have now arrived at the stage where he is eating a full jar of baby food at school in the morning and a range of puréed fruit and veg in the evenings at home. The bribery has radically diminished and the protests have all but disappeared. Even as I type I have to look twice at that last sentence, pinch myself and swear I'm not making this up. Suddenly our horizons have been utterly transformed, the tantalizing thoughts of family mealtimes, even a restaurant outing are flagrantly stalking my day dreams without fear of ridicule.

I think we can officially claim this as progress!


Tursday 20th update:

This must be our week - our nurses have apparently been reinstated. We can't be sure because of course we haven't been told, but it appears the nurses have been told to turn up - when and for how long? Well we'll just have to wait and see won't we. Obviously we will be the last to know, as such information is highly sensitive and probably top secret... so, if anyone asks, you didn't hear it from me.