Monday, 27 April 2015

Baby Bane

The Lodger entered the latest phase of his war on PWS recently. The dreaded CPAP (continuous positive airway pressure) machine. A breathing mask that supplies a constant and steady air pressure into his airways through the night to counteract the sleep apnoea. 
Just at the same time he learnt his new favourite word...No. 

No No No No No No No No. Everything is No. Well not everything, dinner is becoming increasingly Yes but that's another story. But generally The Lodger loves using the word No. And we don't mind because it's all friendly family banter.
If we followed his replies we'd never go anywhere, we'd never come home from where we didn't go, he'd never sleep, never play, never sit, never stand, never do anything. Just No.
In fact he can be very stubborn on the fact that he definitely doesn't want to do either of two very opposite things. But I haven't explained to him the error of his ways there yet. Sometimes he says No to the thing he's actually doing and enjoying doing. But for now No is fine. No is fun.

About a month ago, The Lodger went to hospital to get fitted with his new CPAP mask and machine. We were in good spirits. We had no reason not to be, The Lodger always takes whatever’s thrown at him in his stride.  Action Boots were a walk in the park (excuse the pun) But it turns out that masks were his kryptonite. Who knew!
It was the worst night of our lives. All those sleepless nights we'd avoided with a hungry crying newborn were upon us. 

He loved putting the mask on monkey. That was fun but on The Lodger No No No. The first night his longest sleep was 20 minutes. It was hell and we were giving up before we started. The doctors said he'd need about 6 hours of CPAP therapy per night. We were at 20 minutes. We went home the next day tired and drained with no clue where to start.



We were friendly to the mask. All his stuffed friends were friendly to the mask but The Lodger wasn't buying it and we experienced the ear piercing screams and wailing repeatedly. But then again The Lodger had rarely cried so I cherished these moments as I listened with joy as he admitted these fierce sounds. Quite the contradiction in itself but you know, baby steps and small victories is how we roll.
Slowly but surely Monkey talked him around. Monkey is called Monkey because he's a monkey by the way. We're hoping it'll save time explaining later.

Anyway eventually the lodger would wear the mask before going to sleep but wake up in a panic screaming those joyous screams and take it off and who could blame him. He's a toddler. That's what he's meant to do.
But minute by minute, hour by hour, day by day he built up a resistance against the evil mask. Against his own alter ego Bane. 

We've started calling him Baby Bane and he thinks it's hilarious. He doesn't even know why. But it's a pretty uncanny resemblance Don't you think?
Watch out Batman!


Now The Lodger still says No but we're ok with it because it's usually in the morning when we ask Baby Bane if he wants to take his mask off and he turns away, shouts ‘Noooooo’ and goes back to dreaming about how to defeat Batman.

So as the score stands:
The Lodger 3 - PWS 0
CPAP defeated by Baby Bane, we're ready for the next battle.







Thursday, 16 April 2015

Thank you Walter!

"If you get in your buggy, you can have a bar!" said a Mum to her little girl.

I overheard this on our walk down to the village today. 

I can't remember who advised us or maybe we read it somewhere in the early days but since The Lodger has been born, we have never used food as blackmail.

It's something I would've been guilty of, as a way to pacify my lovely niece before The Lodger arrived. I wouldn't even have thought twice about it pre Lodger. It's natural. It's something people do everyday. Food is used as reward and punishment. 'No treats for you if you're bold', 'Be good and you can have something nice'!

Food is motivating. It's not just children, it's Adults too!  'If I eat healthy Monday to Friday, I can allow myself a treat at the weekend.', I've been so good lately, I can have a slice of cake.'

It's getting harder now. The Lodger is becoming a lot more food aware. It could just be his age or it could be Prader-Willi Syndrome. We will never know.

The Lodger plays in the sitting room before breakfast is ready. I used to carry him in but now we make him walk supported. We try to sneak as much physiotherapy into everyday life as we can. We can't say 'Walk in and you'll get your breakfast'. We have to think of the future. 

We have to use different motivation! 

First thing in the morning, due to low muscle tone, we always find The Lodger's energy levels at the lowest. He'll sit on the floor and say No. He's a typical two year old in that sense. No is fast becoming his favourite word. Then Walter will appear and The Lodger will pull himself to standing and he'll ask for Walter.

The Lodger holds Walter by the hands as I support him and we walk into the kitchen. This takes a lot of encouragement. 

Walter's great though! 

'Walter wants to see how strong you're getting.'
'Walter will clap hands when you get to the door.'

He's The Lodgers favourite and he's fast becoming mine (Sorry Gonzo!) due his amazing abilities to get The Lodger to do things!

We're still in the early days, food is still on the tip of your tongue as a motivational tool but overtime I know this will change. You have to keep policing yourself and the people closest to The Lodger to change habits to make life easier, healthier and safer for The Lodger.

Food is never a reward or punishment in our house. It's just fuel for the body. 

p.s. To Walter. When PWS and all it's complexities might make us feel a little low, thank you for making those mornings a little easier.