Santa's a Hit

What can I say? We had our first ever visit to Santa. It went remarkably smoothly, no one lost an eye, all elves' limbs remain intact. Rory answered all the questions put to him by the man in the red suit, made his formal Christmas demands, he didn't trash the grotto and his big sister didn't have to slope off and pretend not to be with us. Now that's what I call a transplant dividend! Although he was just a touch deflated by the low spec gift, as it was clearly not as per his aforementioned request. We're still working on the whole, 'you have to wait 'till Christmas' lark with him. He's not buying it but hedging his bets and not protesting too much. Little angels, you gotta love 'em.

Cheers,
Ann

Remaining Camh

We met a really nice Paediatrician last week. She has a special interest in developmental delay. Naturally, Rory charmed her instantly. After patiently listening to his encyclopedic medical history, she asked us why he wasn't under the care of CAMHS (Child and Adolescent Mental Health Services). She was too polite to suggest the equivalent grown up agency for his mother! I drew in a deep breath, became the very embodiment of the word CAMH. I visualized all those CAMHS referral letters floating off into a balmy spring breeze in an effort to steady myself before I answered. (It's my new tactic to try to minimize wear and tear on my hip, when I shoot from it!)

I looked her square in the eye and told her that according to his psychologist, he has an IQ on a par with that of a slightly under done Brussels Sprout, and therefore, officially intellectually disabled, thus putting him beyond the remit of CAMHS. Meanwhile Rory was camhly wading his way through her wallet and correctly identifying all of her credit cards! Sensible woman that she was, she replied, even more camhly, and without flinching, 'we might get a second opinion'. I was impressed, cool, camh, collected and talking sense where had they been hiding her all these years?

Could this be progress? Must not get excited, must stay camh, must stay camh...

Cheers,
Ann

Wonder

Hi All,

I've just had one of those weeks. I really think I'm are in dire need of a day care centre for those with 'memory challenges'? Oh it's been a beaut! To the extent that the other kidney has taken to sending me texts which read " Hello my name is Niall, I am your husband do you remember me?". Pin numbers? How are ya! I'm having difficulty with my address and phone number these days - only for the computer knows my password to log on, I may have vanished permanently from the blogosphere.

It has just occurred to me that my internal hard drive, mother board, gigabyte thingamajig might need an upgrade, overhaul or indeed a complete replacement! My brain is uber crammed with appointments, letters of complaint, overdue thank you cards, lunch box ingredients and plans to defrost the freezer. I think this week it just went on strike. While I couldn't blame it, I was, however, deeply disturbed that since dinner still had to be produced, my body couldn't go out in sympathy with my brain. I've been nurturing fantasies of just stopping, not any dramatic meltdown, high drama, I just can't take it anymore strops. Just a nice simple easy grind to a halt. I'm indulging in those day dreams, the ones where where you're by the pool, trailing your left big toe along the water's edge, while sipping one of those fruity cocktails and managing to keep the paper umbrella out of your eye? Ah yes, a 2 week break filled with sun loungers and trashy novels while your brain waits patiently at Dublin airport for your return. Sadly I get rocked back to November in the west, with horizontal rain fall, inside out umbrellas and smelly nappies!

It's funny though, when you do check out for a while - things seem in sharper focus when you jolt back. Today, I realised to my immeasurable joy, that Rory knows all the words and steps to the Hokey Cokey. He can do all the actions for Head Shoulders Knees and Toes. He now understands the concept of 'finished'. He asks to have his face massaged. He no longer looses the plot when he has his toe nails cut. He will put Pringles to his lips. He will sit at the table during dinner. When I ask him "who's the best man in Ireland?', he'll giggle and shout " it's me Rory Barrett".

Sometimes you have to leave the planet to appreciate the glory of where you are.

Cheers,
Ann

Defending The Indefensible.

Hi All,

I thought I'd better give you the next installment of our sinister saga of the search for services! I've had 3 months to digest this latest flash point. That digestion has been far from easy. I have lost countless nights' sleep, sobbed into cups of tea, glasses of wine and the shoulders of family and friends. The whole experience marks a new low in our struggles for Rory's care, and you all know, we have already scraped the bottom on more the one occasion.

Since his dramatic arrival, 5 weeks early in Aug 03, we have had the honour of being surrounded by some of the best medical care known to mankind. Our lives have been touched by some of the kindest, most humane professionals I have ever had the privilege to encounter. They have sat with us, all day when necessary, they have been on call 24/7, they have worried with us,informed and instructed us, but most of all, they have empathised. When life throws you the enormous challenge of a chronically ill child, the dice can roll any number of ways. We came out with some pretty good odds. Against us, was the fact that nobody had ever seen a case like Rory's before, but in our favour, this made the team all the more committed to a successful outcome. Before 2003, very few kids born in Ireland were successfully dialysed from birth. In view of this amazing miracle, you could be forgiven for thinking that every possible early intervention strategy would be thrown at this case to maximize the positive outcome.

Even with my 5 years of bitter experience of the basket case that is early childhood intervention in the West of Ireland, I will never be able to fathom why it is so appallingly bad.

Anyway, I digress from the story at hand, I just had to vent that yet again, excuse the indulgence; but I really do believe that it bears repeating.

OK, so bearing in mind the quality of care and professionalism we had as our benchmark, I immediately assumed that the employment of an unlicensed, threat to public safety, as a speech and language therapist, must have been a huge mistake. Management would be suitably horrified when they found out, surely. Mind you, I was not thrilled about the fact that I was going to be the bearer of bad news, what with my previous experience of messengers and shootings! I pondered long and hard on the most appropriate way to inform Enable Ireland management. I figured an elected public representative would be the best person for the job. He would be objective, yet have sufficient gravitas for people to at least, take his phone calls, he would also be in possession of a rudimentary working knowledge of the legislation governing this type of situation. My local TD did not disappoint on two of the above; objectivity and knowledge. However, it seems he didn't warrant a return phone call. After two days, he gave up and rang head office in Dublin. Their reply was curt, and to the point. They knew about her license irregularities, it seems another parent had expressed concerns 4 weeks earlier! Meanwhile she was still in full time employment, paid for by you and me.

Hello people! Anyone out there on planet HSE listening? You were employing a "threat to public safety" to work with vulnerable children and none of you Einsteins thought it might be appropriate to suspend her pending a full investigation? Lets not forget, ladies and gentlemen, that this woman was still in the probationary period of her employment contract, so there were no legal impediments to suspending her. To say I flipped at this news would be the understatement of the century!

Like my local TD, it seems that I was also on their "Don't Call Back" list. The local services manager took a week to return my urgent calls. Annual leave being cited as the excuse, but none of her minions manged to communicate that little nugget of information during the preceding week. When she finally deemed it appropriate to address my concerns, her explanation fell rather short of what I would have expected from a public servant of her grade. According to current wisdom within Enable Ireland, cases of fraud, falsification of qualifications and being deemed a threat to public safety, do not constitute a loss of clinical competency. In other words, the local management team decided not to suspend her because, even though she had no license to practice, her clinical competency was not in question.I would love to have been a fly on the wall at that meeting, listening to the defense of the indefensible. If anyone could translate that into acceptable logic, I would be very grateful. Because at the moment I am at a loss.

Where do you go when the people in charge play by a completely code of moral conduct to the rest of the civilized world?

How can you claim to care for vulnerable children when you knowingly refer them to a therapist who has been deemed a threat to public safety? I had naively thought we had cleared that kind of rot out of this country, when we closed the industrial schools. Is it just me ? Am I being too demanding here?

Advice would be welcome.

Cheers,
Ann

From the Sublime to the Downright Dangerous!

Hi All,

Well; the auspicious first anniversary has passed and we're all still talking to each other - a major achievement. Corks were popped, gifts and best wishes were gratefully received and big thick wedges of chocolate cake were consumed! A fine day was had by all. Thanks to all you new readers who have just logged on, your comments and visits have given us a much needed boost at a time when our energy was beginning to flag.

It was very therapeutic to be back in Temple St yesterday. The welcome was as warm as always but there was also a palpable sense of shared joy in Rory's progress. It must be so heart breaking for the many dedicated teams that staff our hospitals to have to preform precision work with only the brutally blunt instrument, that is the HSE management attitude, to guide them. I am constantly impressed at how they keep their souls and hearts in tact in the face of dangerous ineptitude. They are the true embodiment of grace under fire. As the other kidney put it so eloquently recently, - he remarked on how he had met countless Wayne Rooney's working in the health system over the last 5 years, but he has yet to meet an Alex Ferguson.
I think that about sums it up really.

That brings us nicely to our current impasse with Enable Ireland. An institution badly in need of a Ferguson style make over (I could name quite a few in there who could benefit from a footie boot being hurled at them)! Again the trauma of what we have endured at the hands of this organization has left me completely speechless, directionless and utterly devoid of hope. Let me try to put this into some kind of digestible narrative for you - again this story carries a health warning - for those of you who are squeamish about children's rights, log off now as this gets really nasty!

Way back in July, our HSE community speech therapist - (who had been doing some very fine work with our little lad), informed me that Enable had finally employed a speech therapist and since all our other services (occupational therapy, physiotherapy and psychology) were allegedly being delivered there, she felt that it would make sense to make the switch to their latest recruit. I have to admit I was uneasy about changing lanes again but I could see the sense in it, all the advice to date indicated that Rory should be seen by a multidisciplinary team. So files were passed, emails sent and calls were made.

I got to speak to this woman in mid July. Now here's where it starts to get decidedly murky. She was quite a force on the phone, as, although she had never actually seen my son, she seemed to be utterly convinced that he needed a very specific test called a cinefluor graphic study. She tut tutted dismissively when I told her I had never even heard of this, and remarked that this was just typical of this country, we were years behind, and she, being a highly qualified American who came from a long line of medical practitioners was clearly the only one who could sort this out. I would have to leave the country if necessary to have this done, and she even hinted that I had indeed been negligent of my son in not having insisted on this sooner. She assured me that if it were her own child or one of her nieces or nephews she would be causing a stink until this test was complete.When she wound down from her rant, I got her to translate the test into our archaic plain Hiberno-English. She was talking about a swallow test.

OK, now I could continue the conversation, we had sooo been here before. I explained that this had already been performed and that there was nothing wrong with Rory's swallow. This cut no sway with our rootin' tootin' yank friend. What the hell would they have known in Crumlin hospital? Anything could have happened since? There was nothing else for it but I had really better get my finger out and find myself a swallow tester stat! She then launched into a vitriolic invective about Enable Ireland and what a shambolic mess they were, particularly the management team. Now, while I had no problem with what she was saying, I did have a problem with the fact that she was saying it to me. I was, after all, her client, and she was, after all, an employee of that renowned organization. There was also that very distant niggling doubt in my mind that if she was a good as she proclaimed, what the hell was she doing working with what she considered to be a two bit operation?

So I managed to extricate myself from the, by now, extremely lengthy conversation by claiming the urgency of an impending school run! I came off the phone with a red ear and a really throbbing brain. Had I really been negligent? Was Rory's oral aversion really all my fault? How could I have not seen this before? Thankfully this self doubt, although profound, was short lived. I emailed the American specialist we had seen in Dublin in May. She confirmed my suspicions and advised against the test. Not only was it very dangerous -(it involves swallowing a large cup of glug called Barium) but it would have been extremely invasive for Rory and could have set us back years in terms of the trust we had built up in him allowing us near is mouth.

This got me very worried, something was very amiss. To satisfy my concerns I Googled the woman, she had an unusual surname so I figured she should be easy to track down. Nothing could have prepared me for what came next. Do remember, that I am very battle hardened but, even a veteran like me has their limits. There it was, a mere 19 seconds later, in black and white, flashing before me on my computer screen - this woman had been struck off in California! I was looking at a petition to renew a surrendered license to practice. Surely there was a mistake, this couldn't be happening - you assume there are vetting procedures in place. To be absolutely sure, I rang the the Californian Speech -Language Pathology and Audiology Board, they confirmed that her petition to have her license renewed was denied, and that as far as they were concerned she no longer had permission to call herself a speech therapist under Californian law. They wouldn't give me any other details over the phone but very kindly faxed through the judgement in her case.

Yet again I was floored, as the fax snaked it's way though my home, (I'm still working with a trusty but prehistoric thermal paper one), reading the pages upside down, words like fraud, falsely using the initials Ph.D after her name, left me reeling. Then it came the final killer sentence that has haunted me ever since....

"The Board remains concerned that if the petitioner were reinstated, the public's safety would be in jeopardy."

So there you have it folks, Enable Ireland had given a full time job, paid for by our tax payers' money to someone who was considered to be a threat to public safety in California. Doesn't that make you feel really secure about where kids with special needs get treatment in this country?

I'll let you all digest that little nugget before I catalogue the appalling reaction we got from Enable Ireland.

Cheers,
Ann

An Anniversary to celebrate with Pride

Hi All,

I must yet again beg your pardon for being such a foul weather blogger - (that's of course, as opposed to being a fair weather friend!)the compulsion to vent on line seems to only strike when I've got bad news. I have resolved to reverse this rather worrying character flaw of mine, and cast my eyes firmly on the sunny side! In the darker days of dialysis I once remarked that I had sustained retina damage from looking on that same sunny side. So that's probably where the last few months of dark blogs came from, a big black sun damage smudge on my retina! Typically, I choose mid winter for my return to sun gazing, as ever I veer towards the triumph of optimism over experience! Will I ever get sense?

I started this bizarre public diary a year ago this week, initially with the purpose of keeping friends and family informed of Rory and Niall's progress as they planned to share a vital organ, in this case a left kidney to be exact. It's very surreal to now realize that on Thurs 13th of November, our son will have been housing his father's left kidney for a whole glorious 12 months. And yes, he is still peeing like a race horse, Rory that is, although now that I think of it, I haven't heard any complaints in that department, from his Dad either.

What a year it has been! I've been trying to reflect in some sort of meaningful way on the last 12 months but all that keeps popping into my addled brain is a searing sense of relief, in the almost 'get out of jail card' sense of the word. It is the primal relief of one who has survived potential catastrophe and can only really truly be expressed by the following phrase : Thank **** it's no longer November 2007!!

Highlights of the last year are many and can all be found in the 'marvel of the mundane' category.Primary among them, must be Rory's first Pee, which has to be one of the most thrilling moments of my life. When your world has been measured out in millilitres of restricted fluid for over 4 years, the sheer joy of watching fluid pour out of a little body for the first time is impossible to describe. This is a boy who could only take 450 ml in 24 hours (and only 400 at week ends), think about it, that's about 4 cups of tea. Now we have a positively cavalier approach to fluid, we're of the get it down ya school of thought in this house - 1500 ml a day and climbing!


And signs by, he's really piling on those kilos. B.K. (otherwise know as Before Kidney chez Barrett) each kilo took at least 12 months to acquire, and boy did we obsess about it. Rory had to be weighed every day sometimes twice a day, to assess his fluid intake - too much and his blood pressure would shoot up, too little and he would be dehydrated. The golden number was always 10kg - the weight he had to achieve to be considered for a transplant. Last year after a year on the list waiting for a kidney, he went into the operation weighing a cool 11kg, last week, he weighed in a 16.5kg, complete with a pot belly and love handles. What a difference a kidney makes.

The battles of the last year were unrelenting and very bloody and we are far from finished with the fight. I don't need to remind you of them, you've walked in my shoes and raged against the HSE horror machine with me. But lets put them aside for this week, it's fitting in this month of November to declare a temporary Armistice. Hostilities will be suspended to enable us to celebrate our achievements in style. So join with us in raising a glass, a prayer, a hope, a light or whatever your heart desires, to the skill and the humanity of that amazing bunch of people in Beaumont and Temple street hospitals who saved our son's life. To that very bunch of people I say, take a bow and bask in warm glow of pride in your excellence.

Let us never forget that goodness exists and miracles do happen.

Cheers,
Ann

The Last Straw

Hi All,

I've been trying to compose this post for a very long time, mulling it over, worrying about going public. We have been brutalised so much by the system that we seem to have become de-sensitized to all the wrongs that are being committed. Sometimes it seems like we're completely out of step with the rest of the world, when we complain, people look at us like we are aliens and give us the "that's just the way it is" speech. This last week has been a new low which I haven't even digested enough yet to write about. I don't quite know where to start on this so bear with me yet again if I am rambling, as I feel like I have just wandered dazed and confused with a still bleeding head injury from a train wreck .

I'll have to go back as far as last March to give you the full picture, I am ashamed to admit that at the time, I was afraid to mention this particular incident as I feared going public would some how impact badly on Rory's care. At that stage, we still hadn't got our service statement or any confirmation of access to services. During the whole fiasco over the missing Enable Ireland Speech Therapist and the scramble to find another to assess Rory under the statutory time frame, I emailed his royal highness Prof Brendan Drum, CEO of the Health Services Executive. In his former incarnation as a lowly paediatric consultant he had reason to see our boy wonder when he was in Crumlin Hospital. (Another period best forgotten, trust me!)

My email, was succinct, I curbed my normal ramblings, I respectfully reminded him of his review of our son's condition in 2004, mentioned all his former colleagues who had treated Rory so skillfully and I asked him why all this expensive treatment was now being put at risk by the lack of Speech Therapy services in the west. I pressed send and waited for a reply, I waited and I am still waiting. Call me old fashioned, but now, a full 5 months hence, I would be inclined to describe the lack of even an acknowledgement, a tad rude. However, out of the blue, in mid April, what can only be described as an incendiary device landed in my in box. And this is where it gets really nasty, you may want to pause for refreshment or fortification before you read any further.

Contaminating my email account, I found a missive so full of spite and veiled threats, that I was left reeling for days. Even now as I type, I can feel my heart rate increase. A local manager, who is charged with overseeing services of the caring profession to the weakest and most vulnerable in our community, saw fit to write in response to us having the temerity to contact Our Lord The Most High Brendan Drum. She reminded us of how she was well aware of our son, and proceeded to detail exactly how much our son had cost her over the years we spent on jolly jaunts to Dublin 3 days a week for dialysis. We were given the breakdown of nursing care, the enormous cost, and most importantly, lest we forget, the fact that all of this was in the form of a 'grant'. Yes readers, a grant, not a right to travel to Dublin for life saving treatment, folks this was a grant, that was within her gift to bestow or take away. We had displeased this all powerful manager by going to her boss with an insolent inquiry about a minor issue like Speech Therapy. We had made her look less than all seeing all knowing among the big chiefs in Dublin, so we must be punished. We must be reminded of who is in charge here, we must be reminded of the 'grant' nature of our support services and in these less prosperous times, this most beneficial bestowal may dry up! There then followed the usual detailed list of the standard chain of letters and reports about that expensive upstart, our son, . Like every one else on the list, we would get speech therapy when they were good and ready to provide it. Who did we think we were with our tales of kidney rejection thinking we could jump the queue?

So let us remember here folks, that our children with special needs, medical, physical or intellectual, who live outside the greater Dublin metropolitan area, are not entitled to support when they have to leave their communities for treatment. They may, if their parents doff their caps and speak very nicely to those very important local managers, be granted little gifts from time to time but otherwise they can just go and whistle for it!

I have to admit, I wept for days. There it was, in black and white, our miracle son, his father's gift of a kidney, reduced to being referred to as a drain on local resources. What can you say in the face of such inhumanity? I have re-read that letter only once or twice, as it is too hurtful, but I have yet to find a shred of any caring in it. But then, that's the secret to running a Community Care service, it is of the utmost importance that you hire managers who don't care. Otherwise the whole enterprise would go to pot, and people might actually get a service.

Alas, I have let that woman silence me, because I was worn out, sick with worry and afraid for the repercussions that would be meted out on my son. This has not sat well with me. Then Enable Ireland hired a Speech Therapist, and all hell broke loose, I am still processing that particular collision. Tune in next time for a full report on that insane incident, I think you've all had enough gore for one day.

The struggle goes on and gets worse.
Cheers,
Ann

Sorry About the Pause

Hi All,

I know you must by now, be thinking that either a). Rory is now already enjoying 3 course meals while perusing the latest edition of the FT 100 index or b). we've all just fallen off the face of the the earth. I wouldn't blame you, as my silence has, I'm sure, been deafening. Just to reassure you one and all, we are all doing fine, and Rory is progressing extremely well despite the appalling level of service he is receiving. I haven't been able to put finger to keyboard this past few months for the simple reason that I have been completely and utterly quashed by the system. I've been at a loss to find a way to relate events without a furious rant which could have landed me in legal hot water! Yet again our tails have been nailed to the rollercoaster that is the HSE, and we have peaked from the high of services granted to the lows of the realisation that the best they have to offer is far from adequate. We have battled the intense feelings of helplessness and entrapment that this situation brings, all the while morning the loss of optimism, our guiding light. I am once again coming out of the fog and regaining the wind to fan those flames, and I will, I hope be able to rejoin the land of the relatively sane in the next few weeks. I am now, at least, capable of ruminating without fumigating on events! So bear with me again as I try to piece together the raw jigsaw that has been our lives for the last few months.

Thanks so much for your continued interest and support, it has quite literally kept us going when we didn't think we had it in us to proceed.

Cheers,
Ann

Another Small Victory

Hi All,

I am pleased to announce yet another small victory - we have finally secured the services of a Speech and Language Therapist!! I know, it takes a while to sink in but there you have it. After a mere 4 years, we have finally made it into the priviliged inner circle of those who get therapy! Instead of any sense of achievement, I just feel drained and confused. Why did it have to be so hard? Why has there been such a scandalous waste of Rory's time and our money? All I can hope now is that we will actually see some progress.

Fortunately the therapist who carried out our needs assessment has also been 'allowed' to give us a service but apparently we're not supposed to tell anyone so keep it to yourselves otherwise every Tom, Dick and Harry could think they were entitled to it!! Honestly, the longer I battle with this insane monolith that is the HSE, the less I understand its logic. For once, words fail me.

Treatment started last week with the next appointment scheduled for next Tue and following at weekly intervals from then on. I think I'm too exasperated to appreciate it.

Cheers,
Ann

Working My Way Through The Bile

Hi All,

I'm still, as the Detroit Spinners would put it, working my way through the bile! Fighting for your child's rights is extremely difficult. It is almost impossible to convey the level of frustration, outrage, despair and downright hopelessness that can fell you at any moment of any day. Every parent naturally wants the best for their child, what's best is a movable bar that is raised or lowered according to our perception of their individual potential, but that bar is always firmly set at fulfilling that potential. Our greatest fears are that we, in some way, could hold them back. To have your child held back by a bloody minded bureaucray is the cruelist form of torture.

The endless lists that trundle on for years and years without any sign of advancement, the false starts, the job's worth officials who just rubber stamp files and move on, they are all stacked against you. It can become all consuming and thereby damage you and the very child you are trying to protect. The mandarins hold all the aces while you jump through hoops trying painfully to flex your brain into the way they may think, in a vain attempt to second guess their next move. It's exhausting. I often wonder about how we put up with such a fiasco of a health service. Think about it, what other service do we continually pay for, even if we don't need it, and then when we are unfortunate enough to need to access it we are denied a service? Not even the most dodgy insurance policy would get away with a blank, no pay out, on all claims. Yet we have no contract, no small print, no redress. The people who control the purse strings are not medics, they can't determine the urgency of any need other than the most blunt budgetary ones. They are faceless, nameless and completely unaccountable to anyone. We all ring our hands and complain but nothing changes. We ring Joe Duffy and get the nation talking but nothing changes, it's quite extraordinary how such a royal mess is allowed to continue.

I've been trying to work out the cost of not giving Rory the service he so desperately requires, and it is the stuff of a serious migraine. If Rory had learned to eat at the normal age, i.e. 4 to 6 months, he would have gained weight much faster and the fact that while on dialysis he was restricted to an intake of only 450ml per day would not have been such an issue. Eating and gaining weight would have seen him reach the optimal transplant weight of 10kg much sooner, lets say for arguments sake a whole year earlier. So that automatically means one year less on dialysis at a cost of, according to latest estimates from the Irish Kidney Association, 150,000 euro per annum. This doesn't include transport from Galway to Dublin 3 days a week for that extra 52 weeks, or the nursing escort two days a week.

Lets take a stab at a very rough estimation of the cost, shall we?

• 1 year extra on dialysis 150,000
• Transport 52 wks @ 600 per wk 31,200
• Nursing Escort 52 wks @ 500 per wk 26,000
• Epo and other medication required
• for dialysis patients, est 1000 per month 12,000
• Specialised feed 150 per week 7,800
• Feeding pumps and Ng tubes est 2,000
• Feeding pump feed bags 500 per month 6,000
• Extra hospital admissions lets say 6 per yr
• @ 4,000 a go 24,000

Rough total 259,000

Annual salary for a speech therapist,
rough estimate 70,000

So assuming we were only held up by one year on dialysis, it could have been more, the difference between hiring a speech therapist , who of course would have treated many other kids as well as Rory is a cool 183,000! And we wonder where the money is going!!! This is a very rough calculation but it warrants closer examination by someone in possession of all the exact costings.

Bear in mind folks that Rory's non eating habit is still costing, even with the kidney transplant, had 70,000 euro been spent in 2003, that would have all stopped at the end of dialysis but instead it goes on and on and on!

This is a crude economic exercise, I wouldn't even know where to begin to try and quantify the quality of life issues or indeed how much it will cost in multi disciplinary therapy as we play catch up on Rory's developmental disorder. Can anyone offer any insight into the logic that is at play here, because I just don't get it!

The similarities with a certain TV commercial spring to mind:

Having your child fulfill their potential? Priceless, for everything else there's the HSE master card!

Cheers,
Ann

Battle Weary

Hi All,


Greetings yet again from the Western Frontier - where right now, that particular moniker seems much more than a mere geographical term. When it comes to primary health care, this really is the wild west! Good rearing and a convent school education have prevented me from blogging in the last week, such was my fury, that I couldn't come up with a polite way of expressing myself, so I figured that silence was a much wiser course of action. To be honest, I haven't digested the bile enough yet to even go into it now, so you will have to bear with me for another few days while I compose myself enough to write about the last week in a civilized manner.

Rory is doing very well though, which, as always, acts as a beacon of hope in all this madness. His engagement and communication skills are really coming on and he even mastered the magic 'please' word this week. His 'thank you' skills still need some work but hey, it's a start. On the food front, nothing as dramatic as last week's Rice Krispie to report, but he did lick some creamy goat's cheese off my finger on Friday. At first I thought it was a once off fluke, but he came back for seconds and thirds when they were offered! On Thursday, he joined us for dinner again, and had great fun making circles out of his green beans, progressing onto robbing his sister's stash when his own were too mangled to comply with his circular logic. To see him handle food with such ease almost takes my breath away, it's so beautifully normal. This fledgling relationship with food seems to be very much based on the humour he's in at the time it's offered, as foods bravely tested today could be flatly refused tomorrow. It's very reassuring to see that our trust in him setting the pace is beginning to show results. We will gradually build his confidence in his ability to eat if we let him do it in his own good time.

The amazing speech therapist we are seeing privately has arranged for a full evaluation for Rory with a visiting American expert in Dublin on May 11th. It took me all of Friday morning just to fill in the assessment form, the level of detail required almost fried my poor unfortunate brain. I felt like such a bad mother when milestones like the first smile, tooth, and words were not recalled with the requisite accuracy! It will be very interesting to finally get him seen by a real bone fide expert who deals with kids like Rory all the time. Hopefully he won't prove to be the honour's paper to her also! This whole search for integrated therapy has been such a strange stage in our journey with Rory. Up until now, we were used to being part of an extremely professional team who all communicated with each other in an intelligent and rational fashion. They were task orientated and when problems arose, they consulted with equally learned colleagues, all the while keeping Rory's best interests at the forefront of their motivation. I am still at a loss to understand why this can't happen in a community care setting, where rear end covering is paramount and patient care is of little consequence.

The struggle continues for yet another week, I will endeavour to keep the faith.

Cheers,
Ann

Are You Ready Boots?

Hi All,

As you can see the boots arrived - and Rory loves them! Already I can see an improvement in his balance and he is running with so much more confidence. We've had a great a great couple of weeks, I still can't believe that we haven't been in Temple St since the 27th of March, it's a new record for us. Rory is back there tomorrow for blood tests, the first that will have to be taken without his central line. Poor little man he hasn't yet realised that they will have to stick a needle in him from now on to get the blood samples required, he's not going to be pleased when he figures that one out!

The plod continues with the Needs Assessment appointments, at least now we can stamp in and make lots of noise with the new boots! I won't bore you with the latest round of brain throbbing, eye twitching encounters, but suffice it to say we are remaining polite in the face of some very challenging situations!

Rory is being his usual charming self, he now modestly proclaims to anyone who will listen that he is 'Fantastic" - he was never one for the understatement, our Rory.
He has also recently developed an interest in Rice Krispies and has now taken to pouring the contents of the box onto the kitchen table. He sometimes likes to add milk to his Krispie mountain, then sticks a spoon in the middle, and puts it to his lips! In the world of an orally averse little boy, this is the feeding equivalent of the Good Friday Agreement! In a move as historic as, say Ian Paisley admitting he quite fancies a decade of the Rosary of an evening, Rory actually picked up a single Rice Krispie on Saturday and put it into his mouth! We watched, while trying desperately to pretend we weren't looking, we waited for the gag, the spit and the violent ejection, but nothing happened. The Krispie simply moved round in his mouth and then went the way a krispie should go, south to his tummy! I'm surprised it wasn't the top story on Sky news!

So lets all hope and pray that this is the start of many more snap crackle and pop moments in this young man's already most eventful life!

Cheers,
Ann

Suffering the System

Hi All,

Please excuse another lengthy silence - I know some of you worry when there is no news. No need; we are all fine and still talking to each other! It's an extremely busy time getting to all of these appointments for Rory's disability needs assessment. It is also probably the most stressful experience to date for me, in all the years we have been dealing with Rory's health needs. The process in painfully slow, it doesn't seem to follow any chronological order. I don't feel like we are systematically working our way through any issues here, what's assessed this week is absolutely the same as what was assessed last week and there is certainly no joined up thinking going on between those who are doing the assessing. I even have to endure questions from one therapist asking me about the status of assessment being carried out by one of their colleagues, as clearly no one seems to be talking to anyone here. It's like dealing with the Fawlty Towers approach to child therapy!

I feel completely deflated by the whole ordeal, I can't believe I have been fighting so long to be met with this kind of "make it up as we go along "type of approach to treating Rory's developmental delay. Naturally, I've been informing myself on what happens elsewhere worldwide in these situations, and it is pretty much universally accepted that kids with a history like Rory's need a multi disciplinary team approach where everyone sings from the same hymn sheet. Unfortunately, this is a cultural impossibility within the Irish community health care system, where the mission statement is never to let the right hand know what the left is up to, and most importantly never put patient care before the preservation of the system. The system is an immovable feast of fear, frustration and frantic red tape where the passing the buck is an art form and fudging the issue is the key to survival. It is a constant source of amazement to me how these people actually manage to get up in the morning.

I will continue this process to the bitter end, because a) the end is in sight, and b) I have no choice, we can't move forward without a statement of need. This prized piece of paper will be complete by the end of May - by which time I will be already incarcerated in a home for the mentally bewildered! Meanwhile we continue to work on Rory's oral aversion ourselves with the help of an amazing Speech Therapist who we see privately. I dread to think of where Rory would be now if we hadn't gone down this route. We are seeing improvements everyday, he is willing to challenge himself more and more, becoming braver with each passing day. Today he sat with us for a meal, he didn't eat anything but he was happy to play with our cutlery and didn't have a complete melt down when he spilled spaghetti on his jumper. He quietly picked it off and dropped it in his dish. Seeing him able to actually handle food without becoming stressed gives us great hope.

I am convinced that Rory's aversion is rooted in issues of trust and control. He has never felt hunger, never had to engage with others to have that hunger need met. To cap it all, anything that came near his face was, at best, deeply unpleasant and at worst, downright painful. We need to work around his feeding regime, making sure his kidney gets the daily fluid allowance it requires but also allowing him time to feel hunger. Then we need to educate him that food is good and not something to be feared. But we have to follow his lead on this, he must choose to eat we cannot force him. He needs the support of a very experienced team to encourage him to make this most basic of life choices. I have yet to find this team.

I am optimistic for Rory's future, he will eventually make that choice, it's just so difficult when meeting his needs is such a struggle within this insane, cruel excuse we have for a health system. It shouldn't have to be this hard.

Cheers,
Ann

A Rare Speech Therapist Siting

Hi All,

Well, I'm happy to report that I now know what the local community care speech therapy department looks like. Imagine, after 4 years I was finally admitted to those hallowed halls, I even met with a speech therapist who told me she had experience treating aversive eaters!! I was stunned, amazed and even awed, as I had been led to believe that people with her skills didn't exist in this area. Mind you, her office was at the end of a stuffy corridor in a portocabin,so it is entirely possible that HSE local management had just simply forgotten she was there! Like all those letters of complaint I've written over the past 4 years, she too had been sucked up into the ether of the esoteric administration of our health service. I bet if one were to do a thorough inventory of all the corridors in all the cabins run by the HSE, all sorts of treasures would be found; a cure for cancer, cost saving measures that treated patients with dignity, orthotic shoes for the under 5's, neurologists, ambulances and even detailed directions out of Angola signed by a certain B. Cowen. It's like the flipping Narnia wardrobe in there!

Reassured that she wasn't a figment of my overactive imagination, I began yet again to detail my son's complicated history. I should really just type up a flyer about it as I have delivered that speech over 100 times so far this year alone! She responded well, took detailed notes and generally seemed to be quite sensible, a rare gift these days, in my experience. We have arranged further dates for her to continue her assessment of Rory's needs with a view to preparing his service statement by the end of May. But no, she has no idea who will be delivering the services to Rory. Rumour has it that Enable Ireland have actually offered a full time post to a Speech Therapist but no one can confirm or deny that he or she has any experience with eating aversion. So even though she herself may be the best qualified person for the job, Rory will be tied into the services of Enable Ireland even if their new speech therapist hasn't a clue how to treat him. Don't you just love a good old fashioned bureaucracy?- the mind numbing nonsense surrounds you like a comfort blanket that's been infested with fleas!

This week sees us battling a further barrage of tests, occupational therapy tomorrow, with physio and psychology following later in the week. At times I feel like the blood is quite literally being sucked from my veins by this process! On a more positive note though we did manage to go over a week without going to a hospital that's Rory's new personal best, 10 days cold turkey since his last discharge! His new found freedom has given him lots more time to get up to all sorts of mischief, like switching off the telly during the last furlong of the Grand National when all present were nervously clutching betting slips bearing the names of the first second and third contenders!! He was lucky to escape that one with his life! Transmission was restored in time for the action replay, the winnings were belatedly confirmed and then duly celebrated.

So I guess the only up date on this on going battle is watch this space for further details!

lets remember folks it's 5 months on since Rory was given a kidney from his dad and he still can't eat.

Cheers,
Ann

Small Victories

Hi All,

I'm happy to announce progress on the footwear front!! The obviously flush footwear department of our local HSE Community Care has rubber stamped the purchase of special shoes for our boy's feet! Of course now we wait, as they have to send someone out to actually buy them! I promise photos in 3D when or if they arrive. Although I can't help feeling some kind of residual survivor's guilt for those who may not have been in the inner flush circle on this round Imelda Marcos type indulgent spending! If you know anyone in that situation, still waiting for approval for shoes, please pass on our messages of support.

The other break through, is in the Speech Therapy department! Lets not get ahead of ourselves here folks, we haven't actually been given any service, but we have been given a date for an Assessment of Need. This will merely outline our urgent need for the services of a Speech Therapist, but will then refer us to yet another waiting list, due to the lack of services available in our area! Are you all still with me? We have the privilege of meeting her on Friday, I promise to report in detail on that one, it should prove very interesting.

On a much more tangibly positive note though, I'm happy to report that we are now half way through our first week in almost 4 years without setting foot inside Temple St Hospital! Imagine, our first week since Aug 04 that we have not been in Dublin, we don't quite know what to do with ourselves. This momentous milestone is due to his recent blood results being very good and also to the fact that we said goodbye to his Central Venous Catheter last Wednesday.

The Central Venous Catheter has literally been his life line since starting on haemodialysis in Sept 04. Sited in one of the veins near the heart, it is the magic piece of plastic which gave the team access to Rory's blood for dialysis. Before the transplant, the continued good function of this tube marked the miraculous bridge between life and death for Rory. It had served him very well and really without incident since it was inserted. However, we were not sorry to see it go! No room for sentimentality in this house! Kids who have these can't have baths or swim as this line must be kept dry. We're still waiting for the opinion of Rory's transplant surgeon on him being allowed to have a shower due to his unorthodox urinary plumbing works.

Rory is also back at his Montessori school two days a week. It's such a joy to watch him skip in the door with all of his classmates. He's making slow but steady progress and was even persuaded to sample some yogurt by his teacher! He spat it out before it even hit his tongue, while one of his buddies sagely pronounced that he mustn't have liked the taste! Still he tried it and he didn't vomit or gag like he used to, so I'm officially classifying that as a victory also!

It's fitting, during this Organ Donor Awareness Week, to concentrate on the little victories. If Rory's story has moved you, please consider getting a Donor Card but also make sure you discuss your wishes with your family.

Lets remember here folks, that thanks to an amazing gift from his Dad, a little boy who was born without kidneys is now running round and tasting yogurt!

Cheers,
Ann

A Boy's Right to Shoes

Hi All,

Sorry for the silence - life has been busy lately what with managing milestones and contemplating military strikes on local HSE positions! As you know we've been running the gauntlet of assessment appointments for Rory's Assessment of Need. Further to this, I have now assessed that the one thing he really needs, is a full time appointment secretary.

So far, we've had his Physiotherapy needs assessed, and guess what? He needs Physio. Then we had part one of his Occupational Therapy assessment, and what a coincidence? - he needs that too! We also had the pleasure of meeting the local Psychologist and wouldn't you know it - he could do with a little support here also. The whole painful process has, at least, helpfully pointed out, that not only will I have to battle for Speech Therapy, but I'll also have a whole range of urgent needs but non existent services to look forward to in the future. Oh be still my beating heart!!

However, my own personal favourite recent encounter was with our local neighbourhood friendly Podiatrist - the person who fits kids with those really attractive corrective shoes. You all know the ones - usually navy, with sensible lace up fronts which just scream "Bully me I'm handicapped". Fortunately, I am very happy to report that they are much smarter these days and don't have that same "use me as target practice" aura.

I'd been waiting for an appointment since last summer - a mere blink of an eye in HSE waiting terms, I know, but 8 months in the life of the fallen arches of a 4 year old represents a large percentage of their life time walking on this earth. We skipped eagerly to our meeting, to be told, what we had already suspected, that yes, indeed Rory did need special shoes. Great, now it's official, where do I sign the form? Well here's the rub. It's not that simple - if it was, then unthinkable things could happen - like everyone who needs a pair might actually get them - and how would we deal with such wanton efficiency?

The very nice Podiatrist inquired if we had a medical card, I gleefully confirmed that we had. She helpfully advised that I get the shoes under the medical card scheme as they were prohibitively expensive. I naively concluded that since we had already qualified for the card and she herself had given her professional opinion of my child's need, then where's the problem? Eh, well no, you see it doesn't work like that. Sometimes the HSE doesn't always sanction them. At this stage, the old familiar temple throb was beginning to make me twitch but, I realised, that in her capacity as the mere messenger, she was clearly not the person to shoot! So I politely inquired how I would know there was a problem - of a HSE sanctioning nature so to speak. I was told that if I didn't get a letter telling me to attend the next clinic in a months' time, then I could reasonably assume that there was indeed a non sanction issue at play. I left in more of a whimper than a temper.

Then logic - the old Nemesis of all things HSE related, kicked in. I thought I'd rather just cough up whatever it costs to get the shoes now, rather than wait for another month on top of the 8 I had already waited, to be told no, and then have to pay for them anyway. So I made a few calls. I eventually happened on the right person to speak to in such situations. She was extremely efficient and understanding - clearly she couldn't have been working with the HSE too long! She would ring her boss on my behalf and get straight back to me, and she did exactly what she promised. Minutes later I was greeted with the breezy sound of her, keen as mustard, tones when she cheerily advised me to" fire ahead with the application as they were flush this month"! In my stunned state I could only wonder if I had phoned her a month earlier, would the news have been less positive? Oh yes, she agreed, it was a disgrace, but that's the way it works - in the leaner months of the HSE fiscal calendar, kids who need orthotics or special shoes go without, if that particular department is, to use their own parlance, less than flush!

Such exacting budgetary management is to be lauded - I am so glad that the best budgeting brains in the country are making sure that no kid gets expensive shoes at taxpayers' expense, without its parents first being brought to their knees!

And lets remember now folks, that there is still a little boy who got a kidney from his Dad 4 months ago who can't eat, and who still wobbles when he runs because of his fallen arches!

Cheers,
Ann

How you can help

Hi All,

A brief note to thank you all for your messages of support. In answer to your many questions of what you can do to help, please keep the comments coming on the blog. Please talk about this situation, as I am sure we are not the only ones. Please make your local representatives aware of your outrage. I want to build up a body of public opinion that is informed, first hand, of the chaos that passes for community health care services for our most vulnerable children. The only way we will ever effect change, is if we take responsibility for what is going on. I am keeping this blog to bear witness to what is happening to my family, this is the only way I feel I can make my contribution right now. Your support is of huge importance, so keep the comments coming and pass on the blog address to others in similar situations, lets hear their stories too.

And lets not forget folks, that there is a little boy who got a kidney from his Dad over 3 months ago, who still can't eat.

Cheers,
Ann

That Parallel Universe I promised.

Hi All,

Did you ever start something and half way through,when the process is so thoroughly turgid you have one of those "what was I thinking?" moments. Well I'm slap bang in the middle of one of those moments - like just past the half way point in the dark tunnel where you have no choice but to keep going. Such is life in the middle of the latest HSE bureaucratic beauty - known as The Assessment of Need. At this point in the journey, my own personal needs could be met fairly quickly and effectively by a week in the Sun enjoying those drinks topped with paper umbrellas, or a good hypnotist telling me I've just woken from a session and the last 3 months were all a dream!

But alas I'm stuck here grappling with the immobile Gorilla that is the Assessment of Need. This little treasure was obviously cooked up by our country's best and brightest public servants with only mayhem on their minds. It even sounds positively progressive on paper. It's all there in black and white in the Disability Act 2005. Under this marvel of modern democracy, children under 5 years of age are entitled to an independent assessment of their health and educational needs arising from their disability. See, I told you it sounded good on paper. Once assessed, your child will receive a service statement - but you see, now this is where it begins to resemble a dodgy second hand car dealership. Your child is then legally entitled to the services laid out in that statement - now, how good does that sound? Except there's a but, and this is a really big one, your child is only entitled to services where available. Those two words 'where' and 'available' those harmless little collections of vowels and consonants are capable of making a complete nonsense of everything that precedes them. You go through months of assessment, 6 long months in total under the Act, to be given a statement of your child's needs but no provision of services. I warned you it was a beauty!

There are also some lovely twists along the way. For example, Rory, as you are by now, quite sick of hearing, has some quite urgent speech and language therapy needs. You don't really need to be a trained assessor to spot that one. As you also know, Enable Ireland have no speech therapist in Galway, so there is no one to carry out that part of his assessment. Hold on to your frontal lobes here - as you may experience some throbbing shortly. I innocently enquired about paying privately for this part of the assessment. Pure sacrilege on my part of course! This assessment may only be carried out by a private therapist where there is a clear case of urgent need and no one qualified within the public sector to carry it out. Apparently Rory doesn't yet fit these criteria,(go figure that one), consequently, a speech therapist must be found within the next 4 wks to assess him or they will be in breach of the act.

Nothing like the possible breach of an old act to focus the mind of a public servant! I received a call from the local Speech Therapy services manager last week. I had spoken to her last summer before I ended up at the office of the Ombudsman for Children. She was at pains to point out her safety concerns about offering Rory a service - what if he gagged? What if he can't swallow? I explained to her again, as I had also done in detail last summer, that there was nothing physically stopping him from eating - this was an acquired defensive behaviour quite common among kids who have been tube fed from birth. The problem was we couldn't get anything into his mouth! Still she felt uneasy and had even phoned Temple St. to see if they could carry out a special test under control conditions. I politely asked what exactly was involved in the test. "Oh he'll just have to swallow something and it will be filmed going down his oesophagus" she chirped. "But we can't get him to swallow anything" I wailed "that's why he needs Speech Therapy!" Her reply was an abrupt 'we'll get back to you.'

Is it just me, or is this a parallel universe populated by people who's minds are wired in a completely different manner to the rest of us poor mortals?

But lets remember here folks, while the HSE continues to prevaricate, there is a little boy who got a kidney from his dad who still can't eat.

Cheers,
Ann

Swimming the Atlantic in Treacle

Hi All,

Are you ready for your next installment? Well here goes, after that investigation which was carried out with surgical precision, -( how else would they have traced all those lost letters?), on Sept. 27th last, we miraculously arrived at the top of the waiting list in Enable Ireland. Champagne corks popped - metaphorically at least as by this time we were up to our what's its in stress with the living related transplant only weeks away.

A social worker was dispatched to our humble abode for the requisite tea and sympathy chat so that a report could be written. So far, so familiar. A very neatly typed report arrived shortly afterwards giving full details of Rory's needs, medical history and stating that we would be admitted for Occupational, Speech and Language therapy but that also there would be input from the in house psychology team ( to review Rory's developmental delay) and that physiotherapy would be offered when a slot became available. Happy days, finally things seem to be sitting into place, and what with a kidney arriving shortly we were in danger of having a happily ever after moment here!

So we merrily went about our business, donating kidneys and generally getting on with the business of daily life. We were blissfully at one with the universe, safe in the knowledge that we had all the systems in place to ensure the best possible outcome for the new kidney. We were discharged from hospital - celebrated Christmas among our nearest and dearest, gave thanks for the amazing second chance at life that our son had been given. Nursed Niall back to health and generally basked in the enormity of what had just happened to our family.

January came - and with it the usual winter bugs and doses so we found ourselves back in hospital for much of that month. I began to get a little frustrated as progress seemed to have reversed so I decided that we should maybe speed up this speech therapy lark. The fact that Rory was still not eating was seriously beginning to complicate our lives. The balance of the anti-rejection drugs was still like playing pharmaceutical Russian Roulette and his lack of normal dietary intake was playing havoc with his sodium balance. This kid needed to start eating now!

With this in mind, I flicked into responsible parent mode again and rang Enable Ireland to arrange a home visit as Rory was still not allowed out in public due to the imuno-suppression.
The feeling I experienced during that phone call will follow me to the grave. I very politely asked to speak to the Speech Therapist, to be told 'Oh her, she resigned before Christmas" "and nobody thought to tell me"? I enquired. A more senior member of staff was called for clearly, and I was assured I would be contacted without delay. Still reeling when the phone rang, I felt surely this was just a mere glitch and of course there are systems in place for events such as this. I explained the situation and was told - "Oh sure you'd have to go to Australia to see her"
So that was it, the plan B for just this type of situation - we'd have to move to Australia - I'm so glad he pointed that one out - as the mood I was in didn't really lend itself to such forward planning! Needless to say the next few days saw what can only be described as a full and frank exchange of views between myself and Enable Ireland.

I pointed out (rather helpfully I thought) that since they had no Speech Therapist they were not now spending their Speech Therapy budget so money could be re-directed to hire in private therapists. The logic of this seemed to be way beyond the bounds of what was bureaucratically possible - the repercussions were un-thinkable! No, no, we couldn't hear of anything as logical as that - this is the public service after all and there'll be no mention of that dirty private word here. Anyway it was completely out of their hands you see it was all the fault of ....... yes, our old foe the HSE. We would be referred to one of their own hospital speech therapists - a therapist was found so end of problem. You would think so wouldn't you? Except, the suggested therapist had already seen Rory in 2004 and deemed him outside her scope of practice - on foot of this we had been referred to Enable Ireland. Are you still with me here? Let me put it simply: in 2004 she deemed Rory to be the honors paper and that a multi disciplinary team approach was necessary - the type which is allegedly only available in Enable Ireland! Now Enable Ireland were sending us back to her in a great hand washing exercise, the like of which, would surely not be found anywhere else in the civilised world!

I do often wonder about that phrase 'public service" - the waiting lists to get in would be the envy of many an exclusive club - thus rendering them, well, not very public really and here we were, actually in the inner sanctum, and we still hadn't gotten any service. So it is a bit of an oxymoron then really don't you think? Maybe they should re name it the Elite Disservice or the Uncivil Disservice? - Suggestions on a post card please!

I returned to the warmth of Temple St and asked what to do. They were suitably outraged - a rather wise stance on their part considering my, by now, murderous demeanor. A letter from our consultant to the HSE was dispatched post haste, stating in no uncertain terms that without Speech Therapy, there was a real threat to a living transplanted kidney. A pretty urgent letter you would think. He even followed it up with a reminder two weeks later - more little urgent rubber stamps maybe? No, lets remember people this is the Public Service - where the cardinal rule appears to be don't deal with the public and whatever you do, don't give them any service! That all happened in January, I have yet to see a reply.

Lets just bear in mind folks that throughout this ridiculous exercise in hand wringing and inaction, there was a little boy who had just got a kidney from his dad and who still couldn't eat.

The saga continues......
Cheers
Ann

Peek a boo

Hi All

It feels strange to be back on the blog band wagon and it's not so easy fitting in the time what with Rory the rascal running a - muck! I thought I should just give you some insight into his progress. He was always a fairly high octane young man, but now with a well oiled 2nd hand, only one fairly careful previous owner, internal combustion kidney inside him, he has become an unstoppable force to be reckoned with! He also has the criminal master mind to match his energy so you quite literally never know what he's going to get into next. So far this week I have pulled him out of the fireplace (unlit), the washing machine, the oven (both turned off fortunately)and the fridge. I have gingerly coached him down from the dizzying heights of the top of the TV set and bookcase. I have retrieved toys and kitchen utensils from, the chimney (are we seeing a pattern here?), the junk pile in the garden which I fraudulently refer to as the compost heap (a cheap effort on my part to imply some non existent eco cred). His finest hour was of course on Mother's Day, which I spent trying to retrieve a plastic model of Sully (Monsters Inc character) from the toilet bowl. Only for the Marigold gloves I don't know where we'd be!

Of course when he's not up to mischief, he's busily soaking up bundles of useful information leaking out from television advertising, then helpfully informing all who will listen with pearls of wisdom such as "Eircom broadband is only €15 a month"! Other favourite activities include singing jingles and sticking tape to his lips ( don't ask - I haven't figured that one out yet myself - but no roll of tape is safe in his presence!). His concentration, focus and vocabulary have come on in leaps and bounds since the transplant. His engagement with those around him has significantly improved also, I suppose now he feels well for the first time in his life he has the time to take in the world around him.

His potential is limited only by the lack of services available to him - that's where we come in - we have to secure them by fair means or foul. We also need to set a precedent so that no other child has to endure this type of discrimination.

I'll resume the battle story in my next post - the brain damage I have endured from my most recent communications with that great nebulous Quango called the HSE has benumbed my cerebral cortex to such an extent that I just can't write about it today!

Cheers
Ann

Blogging Again

Hi All,

It's been a while since my last post and to be honest I thought my blogging days were behind me. We've all been extremely busy getting used to this new kidney, it hasn't been easy! Rory and Niall are both doing very well and indeed both their kidneys are working a treat. Rory's new regime is a challenge - his first tube feed starts at 7.30 am, his last medication by tube is at 6am and it's pretty much every two hours in between that. Fortunately we've been approved funding for a nurse through the night or I dread to think what state we'd all be in by now! Of course if our little man was eating by himself our lives would be so much easier. And so we come to the cause of my fall back onto the blogging wagon...Rory's lack of interest in all things edible.

To give you some background, Rory has been fed by a tube in his nose since birth, not ideal I hear you say but when it's a question of life or death, who's complaining? Normally, by normally I mean in most sane western democracies with a half decent health system, kids like our boy wonder would have regular in put from a speech and language therapist to make sure that they learn how to eat and don't develop what's known as an oral aversion or fear of having anything in their mouth. As you may have guessed, we have yet to meet a state funded Speech and Language therapist. A rare and indeed endangered species by all accounts although there have been some reported sightings in the Leinster region, these however are unconfirmed and will remain in the realm of the urban myth, along with other species such as public orthodontists and ABA schools.

Anyway , I digress, we have been on a waiting list with Enable Ireland, the local state service provider for kids with a physical disability, since April '06. It took us 6 squillion phone calls a mountain of correspondence, 3 appointments with the wrong consultant and a near full nuclear meltdown by yours truly, to actually get on that list. And so every 6 months since then, we would receive a very polite letter from Enable Ireland telling us to be patient that although they were not in a position to offer us any services for Rory, we would be kept on The List. The length of this List was, however, a state secret as was the amount of time we could expect to be kept waiting. Just think of if as the public health equivalent of life in Guantanamo Bay.

Of course the keepers of this List and indeed the reason for the existence of said List was of course, no prizes for guessing it, the big, bad and universally despised HSE! (that's The Health Services Executive to our non Irish friends out there) Now the HSE, as we all know, is indeed the source of all that is wrong in Ireland from the weather to our latest football defeat. I am convinced that if you thread back all the problems of this small Nation, they will in fact sooner or later lead to the front door of the HSE, in much the same way as problems, long ago could have been blamed on, say, The English, The Church or The Youth.

With this in mind and a living related transplant looming, I realised that Rory's feeding problems would have to be addressed by hook or by crook! I knew that the anti- rejection drugs were much more stable and effective in tablet form and I don't need to remind you all of those runny weeks we had immediately after the operation. So, last summer, I donned my crash helmet and decided to make a final run at the door with my battering ram! Hardened old campaigner that I am, having exhausted all local routes TD's and media included, I decided this time, to appeal on behalf of my son's basic human right to eat. I took my appeal to the office of the Ombudsman for Children, any very nice to deal with they were too. They at least observed those ancient social niceties like returning phone calls and actually acting on complaints - all terribly quaint these days. However they couldn't take on the case as I hadn't "exhausted all the local mechanisms of complaint." This, I loosely translated to mean that, there was obviously someone somewhere buried under a rock that I hadn't written to or phoned in the last four years. And so yet again, I photocopied the 6 squillion letters, I wrote another covering letter detailing the 50 million phone calls and I politely requested a prompt response. Then, I waited and I waited until 5 weeks later when I feared I was loosing the will to live, I rang the fossil under the rock to be told that he was on leave. Said leave was of an undetermined duration and no, nobody was checking his mail during this period. Breathing deeply and counting slowly to ten, I explained the situation and was told that he would ... look into it. To be fair he did, look into it, and an investigation officer was appointed. I suddenly began to feel important, an investigation officer no less, had the HSE gone all CSI? Things were looking up. My optimism was, as usual, misplaced - I really must stop doing that, you'd think I'd have learned by now. The investigation officer took a further 6 weeks to report. The report catalogued a labyrinthine list of lost letters to wrong addresses, bureaucrats on leave and not being replaced and other such buck passing pap before finally making the following recommendations and I quote:

1 That Galway Primary Community and Continuing Care (now there's a mouthful !) Occupational Therapy Dept inform Temple St Children's Hospital of the correct address for correspondence.

2. That Galway Primary Community and Continuing Care Occupational Therapy Dept ensure that a written response is issued to all written referrals within a defined timeframe.

Eh Hello? No mention of any treatment then so officer is there? Phrases like " the dog ate my homework" spring to mind here.

But lets remember here folks that all this time there was a little boy who was about to get a kidney from his dad, and he still couldn't eat.

The story continues... If you can bear it, tune in for the next chapter when we will learn about what happens when you get to the top of the list where you meet another parallel universe called The Disability Needs Assessment. I won't go there now as I'm trying to carve this saga up into bite size chunks -

Cheers
Ann