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.