Skip to main content

Our New Language

Since deciding (or having it decided for me) to change my area of life study to everything relating to Prader-Willi Syndrome a few years ago I kind of wonder what I used to fill my brain with.

Thanks to The Lodger, one of our new very mild super powers (and there are a few) as credited to the D.O.D. (David O'Doherty) is our ability to circumnavigate hospitals. 
We don't need to follow signs or ask at the desk - you can almost sense where you need to go.
Obviously this super power is totally magic and nothing to do with the over familiarisation of hospital and health facilities that the world of The Lodger has brought us to.



Pre-investing in The Lodger, it's not that I ever thought about exposing my super power, it's just that I never thought about it. Or that it was even there.
Possibly ignorant to a whole world within our world that we just managed to avoid.
But now we're in and it'll take more than a blindfold to keep me out of an endocrinology department.

And then theres our new language. Self taught, again another skill to the shield of Prader-Willi Syndrome and possibly again ignorance on our part, a world that passed us by - the world of medical acronyms and terms.
So heres the ABC or the A-Z of our, so far short journey into the world of PWS (Prader-Willi Syndrome) acronyms and terms.

Again important to give us due kudos as this is all half self-taught, half very mild super power and probably harder than a Chinese crossword. 
Also thanks to Google. And some magic.
But mainly super powers.

When The Lodger was just a few days old in NICU (Neonatal Intensive Care Unit) he had a suspected stridor (a harsh vibrating noise when breathing, caused by obstruction of the windpipe or larynx). The NICU organised for him to visit the local children's hospital to see a consultant (man/woman super doctor) there.
The nurse came and told us he would be brought to OPDENT and we were to meet them there. We said great but she was gone before we could clarify.

So we began our first quest. We went to the hospital looking for the optitrician dental department (obviously very mild super powers take a while to build potency) but there was none or we just never found it or it doesn't exist.
Eventually, some mild panic moments later we focused on finding the tiny Lodger and the nurse from NICU which lead us to our first triumph. As it turns out OPD (Out Patients Department) and ENT (Ears Nose Throat) are kind of different acronyms. And kind of different departments. And in fairness when you think about it totally make sense. Especially since we were there about a stridor and not to see a dentist with a 7 day old baby with no teeth. Much more sense.

The Lodger & Daddy at 7 days old
            

So now qualified in the world of PWS, with a masters in the acronyms it brings with it, we lead our lives talking to family and friends in a form of crazy letters, shortened words and words I've previously never heard of.

So get a beat going in your head and rap to this...

P to the W to the S. Yeeeeeeaaaaahhhh!
PRADER WILLI SYNDROME IN THE HOUSE!
The Lodger has an OT (occupational therapist) and a  PT (physiotherapist) and the current fight for a PSA (Preschool Assistant) and the next battle an SNA (Special Needs Assistant)
He wears AFOS (Ankle Foot Orthotics) on his feet (or in The Lodgers terms action boots) which he got from the 'Ortho' clinic (Orthotics)
At night he wears a CPAP (Continuous Positive Airway Pressure) mask and now he's flying (not literally, yet) on the GHT (Growth Hormone Treatment)
He visits the 'Endo' (Endocrinologist) and the 'Opthamologist' (Eye Clinic) He does Hydro (hydrotherapy) on a wed (Wednesday)
We learn the 'Hanen' method (Communication course to aid speech and language) via his SLT (Speech & Language Therapist).
He communicates through 'Lamh' (simple signing course)
Rockin' it medical science acronym style YA'LL!!
Everyone shout HYPERPHAGIA! Whats That?! (an abnormally great desire for food; excessive eating)
Everyone shout HYPOTONIA! Whats That?! (a state of low muscle tone (the amount of tension or resistance to stretch in a muscle), often involving reduced muscle strength.)
PWS kickin' it to ya Man!

Fun right? 

Anyway The Lodgers aunt recently gave her very common confused look when we talked at her about his next apt (appointment) with his OT.

She replied:
"That's great but I don't speak your new language!"

Sums up our new super power perfectly.

PWS family weekend is now upon us; the joyous occasion where all people with a PWS connection meet and we all understand each other just fine.





Comments

Popular posts from this blog

It's the most wonderful time of the year....

This is our sixth Christmas.
Our sixth Christmas since our son was born and diagnosed with Prader Willi Syndrome.

If you had asked me back then, how I thought Christmas would be now, I would have told you that we probably would have cancelled it. When we first got the diagnosis of PWS, all we could see was food..... food everywhere, at every turn, at every event, everywhere. How were we going to protect our son, keep him safe and enjoy an event that's filled with food?

And then we started to learn about some of the other complexities of PWS, the need for routine, the challenges of change, the importance of setting expectations and we were overwhelmed.

What we didn't know was how incredible our son would be.

Today The Lodger got his Christmas holidays (break!). His last week of school consisted of a topsy-turvy week of no homework, a change in the usual school day and a nativity play in which he played the role of an angel. 
How did he handle it all?

Without a hiccup.... well he wasn&…

Jingle bells... not until December!

The festive season is upon us once again.

The Lodger was banned from talking about Christmas until December 1st and it was purely selfish on our part in saving our sanity.  What we didn't expect was that The Lodger would take this new rule to the extreme.
If we were out and about in November, we would inevitably stumble across Christmas themed decorations. I don't think many children would stand there pointing at them and shaking their heads saying "O no, take it down. It's too early. Mum close your eyes. You'll be so cross if you see it!"
When Santa's grotto appeared in the local shopping centre, he was on his way to talk to the security man to tell him to remove it. If there were fines to be handed out for premature Christmas decorations, The Lodger would have made a fortune!! 
It was like walking around with a mini Grinch. Though, in all honesty, a mini Grinch who 100% loves Christmas. 


The 1st December could not come fast enough. 
"How many days are le…

Ugh Pancake Tuesday!

The Lodger makes me laugh, most days.  He has a really funny view of the world and an amazing way of just getting on with things. 
Yesterday he came out school telling me it’s Pancake Tuesday tomorrow in an excited how brilliant sort of way. 
He then stopped and said “What is Pancake Tuesday?”
A quick explanation and a reassurance that he will have a pancake for his special tummy and all was good.... well when I say good, I mean content but with a 1000 question follow up, repeatedly, throughout the afternoon and evening...... and the following morning.... but that's just how it is with The Lodger. 
"Mum will I have a pancake?" "Yum, I love pancakes!" "Mum , I'm going to love my pancake!" "Mum, does everyone know it's pancake Tuesday tomorrow?" "Mum, can you make pancakes?" "Mum, will you make the pancake after school tomorrow?" "Mum, pancakes are great." "Mum, when is Pancake Tuesday?" "M…