London Calling

I don't quite know where to begin, such has been the level of activity in our hive of late. You may remember I mentioned a feeding assessment team in London. The very sensible developmental paediatrician in Galway had offered to refer us there last November. All very straight forward you might think. Yes very straight forward indeed. As with everything associated with the HSE, it took two visits 4 months apart, approx 662 phone calls, a small forest worth of paper work, 5 hours of misinformation, a bottle of gin (- mine -medicinal ), a very near urge to take up smoking after 9 years of abstinence, and a partridge in a pear tree to actually make it all happen.

A word to the wise here, if ever you are considering dealing with long term illness and the HSE, please, please go into training. Some ex-special forces type boot camp, with some serious 'what to do if you get captured in the desert by the other side' type psychological expertise thrown in. Without it, I fear you may crack at the first hurdle. As I have been doing HSE time for almost 6 years now, my energy is prone to the odd dip into despair. At just one such trough, the bloodhounds in Temple St, came charging down the hill to my aid. They got on the phone, they set up a rota, they badgered, they pestered, pleaded and I dare say even threatened until one day 3 weeks ago, an appointment was extracted at metaphorical gun point. It left me speechless, a rarity for me I can assure you.

We sprang into action, a scramble for the dog eared London A to Z. Pins were stuck in the Tube map, cross referencing address books to see who would be kind enough to put us up for the night. A plan percolated quite quickly. The other kidney was up to his eyes with work so another grown up had to be found to help with the journey. Auntie Mags, yet again stepped fearlessly up to the plate. (One of these days she's going to wise up; and we'll be in big trouble.)

So, on Tuesday, off we went, the 3 of us, on our adventure to see the nice man who was going to talk to Rory about eating with his mouth. Rory agreed to come along but was only going to give this nice man, a very brief moment of his time. Eating with his mouth, while still a hot topic of debate in our house, is paid only, lip service, by Rory!

He handled the journey with aplomb - a seasoned air traveler, the plane held little fascination even though it had jet engines and was actually leaving the country. This was nothing compared to the train that whisked us from the airport. It had conductors in uniform and a whistle at every station; now that was the epitome of cool.

I watched with wonder as he took all of this new environment in his stride, only complaining when we weren't seeing the nice man immediately we landed, as he was in a hurry to get back home.

We got to see the nice man, a gastroenterologist, and his team, a speech therapist, clinical psychologist and a dietitian, at midday on Wed. Rory showed his usual cool, interrupting the proceedings only occasionally to insist that we go to the airport, but generally charming the entire room.

I don't really know what I expected from the visit, I knew in my heart there was no magic bullet for this situation. I did wonder though, if there was something we hadn't tried. I also had very precise questions about Rory's motivation to eat and his ability to recognise hunger. It was really refreshing and comforting to sit in a room with people who see kids like Rory every day. They made no assumptions, no tut tutting, no; I can't classify him, so I should really concentrate on what he can't do instead of what he has achieved. None of the usual; I have no barometer with which to measure, so I'll just go and use the worst case scenario scale, the default setting.

They just agreed, concurred that yes this was all totally normal given his experience. They marvelled at what he has achieved. They gave some very helpful advice, explained some of the probable psychological processes going on for him right now and praised us all in how far we'd come. It was quite amazing really, they had so much faith in Rory, I was almost taken aback. I'm so used to having his shortcomings pointed out by therapists. They just confirmed my gut feelings - let him explore the world, let him get used to feeling well, and most importantly let him lead us.

I had been giving myself such a hard time that I hadn't been consistently working with food in a very structured manner. They understood the difficulties involved and suggested we work on the fly, choosing only activities that he enjoyed. No forcing, no reward system, no passivity. He has to learn to experience and enjoy tastes for himself, not to please someone else. It makes so much sense, I had always felt this but I was a lone voice here in the West.

Very interestingly, in light of last year's Enable Ireland fiasco, the gastroenterologist agreed that any investigations into his ability to swallow are pointless at this stage. We have no evidence to suggest there is a problem, and testing would be hugely traumatic. If you're reading this; Miss crazy lady speech therapist; can I just say, in as smug a tone as I can convey in writing?
I told you so!

I just hope that you are not still working with vulnerable kids, because it has taken me exactly one year, almost to the day, to prove the irrevocable damage you could have done to my son.

Next time you try to bully a parent, just remember you are only a Google search away from being found out.

You have been warned...

Cheers,
Ann

A Tale of Two Days.

I remember it was very hot that August night. Somewhere along the road from Galway to Dublin, Saturday had turned into Sunday. My neck was sore from staring at the car wing mirror for 3 hours. I was straining to catch the blue flashing lights as the neonatal ambulance carrying our 2 day old son sped passed. I never saw the lights. We arrived long before them. My apprehension intensified. The ICU staff were surprised but welcoming. We were led to the parents' room down a corridor into a foreign land. Machines beeped, whooshed and pumped. Kids were plugged in and zoned out. Parents keeping a vigil by their beds. Staff were calm, in control but very serious. We were in big trouble, I knew we wouldn't leave this foreign country for a very long time, and when we did, our lives would never be the same again.

The ambulance team arrived about an hour later. They assured us all was well. Rory handled the journey and was reconnected to the ventilator in the adjoining room. It was time to let the staff do their job, someone asked if we wanted to see a priest. I declined. Tests on tiny babies take time, a lot of time. At 3.15 am a very kind consultant urologist knocked gently on the door and introduced himself. First names only, no room for titles or white coats here. He was shaking his head, not in despair, but in disbelief. It had never been seen before. No kidneys but, as he put it, lungs in pretty good nick. This was one hell of a fighter we had. We're not sure though, it's never been seen, we need more expertise. They'll be here in the morning. So we were asked to wait.

I've learned a lot about waiting since then. At that stage, I was still a novice; I didn't cope very well. 12 hours of wondering would we have to steal a last look, kiss him goodbye and turn off a whooshing machine. 12 hours of hell. I couldn't sleep and, having just given birth; sitting was still a challenge. So I walked, I walked every corridor in Crumlin hospital, railed at every holy statue and blessed virgin mocking me with their benign, trust in Us eyes. For those of you lucky enough not to have darkened the doors of that hospital, believe me that's a lot of eyes!

The night stretched into day, the morning bled into afternoon before we were released. His lungs came up trumps. The risk was worth it. It would be tough, there would be a lot of time spent in hospital, there were no guarantees, but he was given good odds. We grasped that chance with both hands and ran like hell! In the space of an hour we had re-ordered our lives, secured a house to live in, plotted our move to Dublin and remembered how to breathe in and out.

Today was just as hot as that August night, but today, he walked into his new classroom, smiled at his junior infant class mates, turned to me and said 'see ya later chickenlicken'.

What a difference a day makes.

Cheers,
Ann

These Are Good Days

It's been a great few weeks. The sun had it's best millinery out, and we basked in sumptuous sunshine. We ate in the garden most nights, swam in the chilly bay and ate ice cream till we felt sick.

It all started with Jess' communion - a really memorable day, not for any blingtastic bashes, but just for the fact that we had a celebration. I realised as our neighbours joined us for tea, cake and the odd drop of something stronger, that we had never had the occasion to invite them in before. We've been literally firefighting for almost 6 years. It was lovely to kick back and share a laugh.
It also gave us a long overdue chance to say thank you to all of you amazing people out there, who have opened your hearts, houses and arms to us during the dark days. Look how far we've come, now take a bow all of you, because we couldn't have done it without your support.

We can even report progress on the psychology second opinion. We had our first session last week with the new psychologist, and there's another tomorrow. So far, she appears to be of the non furry, string operated variety, but we will reserve all judgement till the final report. Just the old superstition of chicken counting and eggs hatching, you know how it is.

Plans for Rory's launch into full time education in Sept are gathering pace. So far, we seem to have dodged the cut backs and it looks like he will be approved for a Special Needs Assistant. Again caution is advised on chicken head counts here also. But fools that we are; we live in hope.

I've been busy trying to keep fit - remember those new years resolutions? In an effort to put my money where my cake hole is, I signed up for a sponsored swim (well two actually; but more about that anon). So far we have raised a tidy sum for the Ian Daly Swim a Mile with a smile for Barretstown. Feel free to log on and donate to this wonderful cause. I nearly had to be hospitalized and it cost me a fortune in physio, but I did it. I was not alone; auntie Mags, complete with dodgy arm was one of our star swimmers. A huge thanks must also go to Orla, Jen and Damien in the Ardilaun leisure club, who, bless them, didn't need any coercion to get involved. So we're all feeling nauseatingly smug at the moment!

The twists and turns of this journey will always catch me off guard. This blogging business has become such a major part of my life. I am now involved in the lives of people I've never even met. I worry about their kids, their desire to have kids and their on going health issues. They, in turn come and visit here, to leave messages of support and encouragement. But today, I was literally blown away by two posts.

Steph is facing some major surgery, but with an optimism and chutzpah that just takes the floor from under me. She is an inspiration. The other major news is that Xbox is going to be a Dad.Big sissy that I am, I wept with joy reading that post this morning.

Of course I've heard nothing back from Enable Ireland, but honestly, did you expect anything?

These are good days; so lets not waste them.

Cheers,
Ann

Enough

It's been a draining week. Listening to the catalogue of crimes against humanity perpetrated by the Irish state and religious orders has been very disturbing. What has caused me most pain is the response of the HSE, assuring us that it can't possibly happen now as there are safeguards in place.

This is not true. These so called safeguards, of which they speak, consist of a voluntary code of practice called The Children First Guidelines. They have no legal basis and are not uniformly implemented across the sate.

Last summer my son was put at risk by a dangerous therapist working for Enable Ireland, an organisation which claims to adhere to these safeguards. When the risk was exposed; they lied, bullied and hired very expensive legal counsel. No action was taken. Although they have been proven to be in breach of Children First Guidelines, there is no sanction available for this breach. I have no where to go with my complaint.

Last week, just prior to the publication of the Ryan report on Institutionalised child abuse in Ireland, they sent me yet another waste of paper in response to their negligence towards my vulnerable son. I am no longer prepared to engage in a game of paper ping pong with people who do not share a decent moral code. This has to stop.

I've had enough, so I wrote this letter:

Director of Services,
Enable Ireland
Seamus Quirke Road
Newcastle
Galway


May 25th 2009,

Dear Clare,

I was dismayed to receive a copy of your ‘Protocol for the management of suspected child abuse’ on May 8th last.

The risk, to which my son was exposed, by the lack of adherence to the Children First Guidelines during the dismissal of your speech therapist, has already been established. The time for sending me this document has long since past.

In a week which has seen the publication of the Ryan report on institutional child abuse in this country, it is deeply distressing for me, as a parent, to see that organisations charged with child welfare are still failing our most vulnerable.

Please stop prevaricating, I want you to carry out a full disciplinary hearing on why this was allowed to happen to my son, I want to know exactly how many other children were put at risk. I want cast iron, binding procedures put in place that will ensure this will never happen again.

This is a moral and ethical issue, please stop hiding behind bureaucracy and be big enough to take a stand on child welfare.

I would be grateful if any further correspondence from you detailed only action, not excuses.

Yours sincerely,



I doubt I will get a meaningful response.

Cheers,

Ann

MacGyver Moments

Rory's personal plumbing can best be described as unorthodox. He passes urine through a little slit in his abdomen. For a lad that never peed until way past his 4th birthday, we consider it a major achievement - it could come out of worse places!

Management of this uber alternative u-bend, is pretty straight forward, but it does require a certain level of inventiveness. During the day, we slip a pad into his nappy to collect the constant drip. This pad is a classic of the maternal necessity, school of invention. Pad's, of the like required by our lad, are not what you would call, an over the counter item. They are the product of much discussion, trial and error. Thanks to the bright sparks in Temple St., we happened on our current model; a new born nappy cut in half with a strip of Mepore tape stuck across the top.

I tend to make them in dozen batches, usually while watching telly in the evening. It's a real Blue Peter experience, scissors, sticky tape - the whole kit. I have it off to a fine art now and can rustle up a batch before the tea is even drawn! The pad usually lasts just shy of about two hours before the telltale wet patch becomes visible on his shirt.

At night we attach a bag with a 2 litre capacity, although a late starter, he now pees like a pro.There is no road map for urine routes such as his. He's a one off. A bit like speeding up the M1 before the official opening, without a sat nav. Each new stage, has us scratching our collective heads.

We've arrived at an un-signposted cross roads. The tube, his almost new ureter, which conveys the urine from his reconditioned second hand kidney, is also a miracle of recycling. This ureter came with the kidney and, well, although it came from one former, carefulish owner, it has been around a couple of decades longer than it's current owner. In short, and really no pun intended here, it is not going to grow with our bolting boy. Here's where the law's of physics are very visible, as he grows the ureter is stretched, and as this tube stretches, the hole at the end gets narrower.

We've been monitoring this for a while, we even had the opening surgically dilated in Crumlin back in February. After this procedure, I was granted yet another unenviable medical task; that of stretching it daily. Now, I've learned some procedures, since Rory was born, many were not pleasant; injecting EPO into a 3 month old thigh, passing NG tubes, but I did them as they were keeping my boy wonder alive. But, I have to fess up here and admit that stretching a urostomy with, what looks, for all the world, like a stainless steel crochet hook; is, put mildly, my least favourite procedure to date! I often wonder, if years from now, he'll fill expensive hours of therapy with memories of his mother plunging stainless steel hooks into his stomach! Well at least it'll give him something colourful to recount!

I noticed last week that my daily stretchings were becoming a much more difficult affair. The opening was getting visibly smaller. Now as you can imagine, I watch urine flow down his plastic bag at night, in the same way that a new mother neurotically checks that her new born is still breathing. An interruption of flow is just too horrifying to even contemplate, so it was with a heavy heart that I contacted the hospital on Friday morning.

I had prepared myself to leg it to Dublin. Luckily, the other kidney was not away on one of his very frequent 3 week work trips abroad. So on the face of it, a Friday dash to Dublin was completely manageable. Jess could stay with her Dad, while boy wonder and myself crossed the country. The phone calls back and forth were promising, maybe we could hold off on the dash. A variety of surgeons and ologists were consulted, and finally arrived at the solution of getting a smaller crochet hook! Simple yet brilliant. For the sake of expediency, it was suggested that I try to borrow one from Galway hospital.

I phoned the always helpful Paeds dept. I was greeted with the usual warmth, concern and large doses of common sense. The nurse who answered, gave me all the relevant contact details, but just as we were winding down the conversation, she asked if the implement in question was available in Temple St. When I confirmed that was the case, she suggested I get them to put one on a train to Galway immediately as it would be a lot quicker than trying to track one down this side of the Shannon. I was instantly struck by the genius of the suggestion.

So, our sainted consultant in Temple St procured the implement, and I called our former dialysis taxi driver to pick it up and deliver to Heuston station. Fortunately, these two links in the chain are made of solid gold. The consultant personally packed up his two preferred options, and the taxi driver charged through lunch time traffic to meet the 14h35 to Galway.

She arrived on time, only to find a sign proclaiming that Fastrack had ceased trading! Now, way back in the days when I had a career, Irish Rail's courier service, Fastrack was my very flexible friend. I could practically recite the timetable by heart. How had this bastion of Irish communication, the purveyor of all things provincial, been closed without my knowledge? I was dumbfounded; now what?

The taxi driver said she would investigate further. The next phone call, was a hoot! I have no idea what she said, threatened or promised, but all I know, is that the package was thrust into the hands of the train driver who personally guaranteed to deliver it into the hands of the other kidney in Galway station! I love it when the old Ireland shines through all the shallow gloss of progress!

By 17h22 the new smaller medical thingamagiggy was in my hands. All it took was a further call to the consultant to compare size with our current incumbent and the job was oxo!

MacGyver would have been proud.

Cheers,

Ann

The Rogue's Progress

For some reason, I have a really vivid recollection of last year's May bank holiday weekend. I remember the weather was beautiful, we spent most of it in the garden pottering. Rory was battling a cold and I was sure we wouldn't see out the weekend without a transfer to Temple St.I was wrong, he beat the bug. It was the first time he shook off a dose on his own, a big milestone. I really began to readjust my radars, his new kidney was changing the rules of our lives in so many ways, we almost had to learn a whole new script. We were still travelling to Dublin once or twice a week. I had been trained to access his central line and take blood myself. A nerve racking procedure, inducing severe bouts of jelly legs and much dryness of my throat, but it's amazing what you're prepared to do to avoid another regular trip to Dublin!

This year, the weather failed to delight, but Rory manged to shine incandescently! While the sky was so thick with rain, it was literally hanging into the ditch, Rory sang his heart out and promised us all that once the rain stopped, we'd go to the playground. His joy at spending time with his family barely contained. Having stripped the sofa of all cushions, he and Jess bounced rolled, giggled and tumbled their way from Friday to Monday. Jess wisely remarked that; " you don't have to be cracked to live in our house; but it helps!"

A conversation through the comments of my last post made me realise, I have been doing it again; only posting about boy wonder when I have a complaint about the system. So today I'm taking a moment to revel in how far we've come on this most exciting of journeys.

I can't even begin to detail the progress of this last year there has been so much. So much, for which we are incapable of expressing the immensity of our gratitude. Maybe these few photos will give you a glimpse of the the Rogue's wondrous progress.

Cheers,

Ann

Moving from the land of the unwell

Some eminent academic once described living with long term illness as 'migrating to the land of the unwell'. Very apt indeed. As a family, we've been residents of the land of the unwell for nearly 6 years now. It's a funny place, the land of the unwell, very isolated and with a very strange social order. Like any land, there are some amazing residents there, but there are also some who are not really what you would call good neighbours.

Making the transition from the land of the unwell is not that simple. For a start one has to be, in short, well. We're not totally well yet but we're not unwell either. We don't have a diagnosed disability as such, but we do have some catching up to do. So that places us in limbo, somewhere between the land of the unwell and the land of the well. When you live in this limbo, bureaucracies don't quite know how to deal with you.

Take boy wonder for example, he's getting ready for mainstream school in September. This will not be possible without a Special Needs Assistant (SNA) and some intensive resource teaching hours. The SNA will not be an issue as he is incontinent and still doesn't eat, so it's a fairly straight forward medical requirement. The resource hours, on the other hand, are a bit more tricky. To qualify, he must have a permanent physical disability. We could say that as a result of a congenital defect, in his case, the absence of kidneys, he has a disability that is profound but hopefully not permanent.

However, I must supply proof. But there's a glitch. Due to a fundamental disagreement,I can't supply the very nice people in the NCSE (National Council For Special Education) with any of his reports from his Needs Assessment. The first problem is that his psychology report maintains that he has an IQ of less than 70. The reason, our learned friend, the Enable Ireland psychologist, came to this rather bizarre conclusion, is that most of the tests he carried out on Rory, related to food and eating. Having never eaten in his life, Rory simply refused to engage, ergo less than normal IQ. Brilliant.

So, I asked for a second opinion, almost a year ago now, as is my legal right under that bad joke that passes for legislation, the Disability Act 2005. In the meantime, as you may recall, I became involved in a battle with Enable Ireland over their lack of a child protection policy when screening staff.

Mysteriously my second opinion never materialises.

So now, in order to get my child the support he needs in school, I am dealing with a report that says mainstream school could never be an option for a boy with such a low IQ. Meanwhile my son is thriving in an Irish language preschool handling bilingualism with the kind of panache that only kids can display.

He doesn't have a diagnosis, just a suspicion by a muppet with a psychology degree but no common sense. He can't be assessed for ASD or any other form of intellectual disability because he is in Enable Ireland, they only do physical disability. Child and Adolescent Mental Health Services (CAHMS) won't touch him because of his psychology report. I can't access summer tuition for him because he doesn't have a diagnosis. I can't get a diagnosis because according to his psychology report, he is a human vegetable. Are you still with me?

I got thick last week and threatened legal action. I have just been informed that, I will have a second opinion within 10 weeks.

Should I call the removal van? Are we on our way?

Cheers,
Ann