Sunday, 20 April 2008

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.


1 comment:

Véro said...

Go for it mamacita ...

Moi qui ne suis pas une "experte" te décerne le prix de la mère la plus combative que je connaisse et croyez-moi j'en connais ...

I think I've told you that already ... but still , I'm so proud of you and the rest of the family !
You're my hero Anita , don't give up the fight , you will succeed at last !
all my support & love my little darlings