Tuesday, 20 October 2015

Ditch it or Change it...

The first year after The Lodgers diagnosis every week there seemed to be something new that we would have to get our heads around as parents of somebody with Prader-Willi Syndrome (PWS). 

All we could see was FOOD!!

At birthdays there's cake.
At Halloween there's trick or treating.
At Christmas there's too much.
At weddings there's food.
At Easter there's chocolate.
At family and friends get togethers there's food.
Walking down the street, there's food!

And then there's the things we enjoyed doing, baking and cooking, eating out in restaurants, going for a coffee down in the village, a takeaway when we didn't feel like cooking, picnics up the mountains, a trip to the cinema with popcorn, an ice-cream on a sunny day, a hot chocolate on a wintery day... the list goes on!

In that first year, we enjoyed the last time we'd have our favourite cake on our birthday, a selection box at Christmas, an Easter egg, an ice-cream, a hot chocolate because we felt The Lodger wouldn't remember as he was too young and we gave ourselves a year to banish our bad habits surrounding food and introduce new traditions into holidays that weren't food related. 
Happy Halloween (The Lodger 3 years apart!)

We're three years in now and I'm happy to say we still do most of the things on the list above, albeit with some PWS friendly alterations. 

At birthdays there's cake and The Lodger can enjoy a yoghurt with some berries.
At Halloween there's fancy dress and trick or treating for crayons/small toys/books.
At Christmas there's new traditions such as the non food advent calendar.
At Easter, there's a treasure hunt for non food items!
At family and friend get togethers and celebrations, there's an incredible understanding from our nearest and dearest to not give The Lodger food without our permission. 

We eat out with The Lodger. Perhaps too much, as he now serves food from his kitchen like a waiter.... See photo! The only problem we have encountered is kids portion sizes being too big! This has been quickly overcome as we serve The Lodger to his own bowl/plate that we've brought from home. 




We do structure our daily routine around meal times. Meal times that are set at fuzzy times. I can't remember who advised us not to serve by the clock but we've stuck to that. At snack time, he'll happily enjoy his snack brought from home when we treat ourselves to a cappuccino in the village. We've had picnics up the mountains, in the zoo, in the forest park. It takes a little bit more organising but it works.  The Lodger eats a healthy, no treats diet. Food purely plays a functional role, it's fuel. 


Out with his Auntie for a snack
The Wishing Chair in the Zoo

We have found we can't rely on places to have The Lodgers approved snack/meal items, so we do bring a lot from home. Kids menus have a shocking lack of vegetables, so we often order an extra side of vegetables from the adults menu for him. It's all been successful, apart from the offers of ice-cream and lollipops, as nobody can resist The Lodgers charm and people love to reward with food but we politely refuse and if we have the time we educate.  

We bake and we cook. We even spiralize now (Thanks Hemsley+Hemsley). 

and The Lodger cooks in his play kitchen. 

After a lot of research, we introduced a play kitchen to our home, a toy I thought as a parent of somebody with PWS we would never have in our home. I thought it would increase anxiety, that he'd become obsessive, that it would be the only toy he'd play with but that has not been the case at all. Often the toy sink is used as a bath, the oven is used as a cupboard that stores his books and a toy tool set. The Lodger will happily make callers to the house a cup of tea, served with a plate of vegetables and if you're lucky a banana. He'll tell Walter and the gang that the meal time is over and cups and plates will quickly be swapped with books for reading time. It's been a great addition. 




The Lodger causes much entertainment when we do the food shop. We use every day activities to try to improve his vocabulary. As we put something into the trolley, we name it and if it's a food item, it's usually followed by a 'yumm'. People nearby have quite the giggle when it's a food item not normally enjoyed by a child such as onions and The Lodger is sitting in the trolley with a big smile on his face saying 'yummmm!". 

We could have ditched traditions and outings but it's not possible. The world we live in loves food. It's everywhere. We've made changes that have worked for us and we are aware that further changes may need to be made as The Lodger gets older, but we are prepared and ready! We changed a lot, taking the focus off food and onto fun!! 
PWS zero - THE LODGER Winning!!

Friday, 2 October 2015

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.