Skip to main content

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.


Popular posts from this blog

Prader Willi Syndome - The Liam Neeson Effect

Firstly I can't say I am in any way qualified to discuss this subject. There are no letters before or in fact after my name. I went to college but didn't learn anything about stress, anxiety or Prader Willi Syndrome. And I don't get paid large quantities of money to discuss these topics.
But what I do have are a very particular set of skills, skills I have acquired over a 4 year period. Skills that make me a nightmare for people like you.  The last part is factually not correct but if it's good enough for Liam Neeson it's good enough for me.

My skills are a little different and totally self taught through nothing other that necessity. The necessity to deal with the wonderful symptom of anxiety in a 4 year old with Prader Willi Syndrome.  Again I'm only 4 years and 7 months into my journey of involvement with Prader Willi Syndrome so my experiences and thoughts are just mine and not the silver bullet of PWS. If it was, maybe more people would read this blog.
The Lodg…

The Shuffle Monster

Sometimes you enjoy spending time with your child. I'd even go as far as saying most of the time it's enjoyable.
But then there are those other times...
It's 5am. I know because I've checked the phone, undetected, hopefully, as The Silent Shuffle Monster makes his way through the darkness. The Lodger is awake.  I always check the time in trying to understand this next crazy symptom of Prader-Willi Syndrome.  The dreaded early waking.  I not sure on the specific reasons or causes for this. Possibly hunger or a low blood sugar level or possibly anxiety relating to the 'Will they remember to give me breakfast?' A consistent worry in the world of PWS.

Ive captured this moment before, the waking and slow approach, It happens like this. The Lodger wakes, reaches out turns off his sleep apnoea machine and carefully removes his mask. He then slips carefully from the bed making sure not to wake Walter and pulling the covers back up on him. Important not to wake wake Walter. Th…

Prader Willi Syndrome, it's not always fun!

It's been quiet in the world of The Lodger of late and by quiet I mean so freaking busy there's no time to write about the trials and tribulations of Prader-Willi Syndrome. 
I guess it's also easier to write when times are good and when there's time for celebration but I guess if we're to be honest about Prader-Willi Syndrome recently there’s been a few more bad days. 
If it's not another disappointing hospital trip where your answers still can't be answered because let's face it they don't know all the answers, it's another hoop to jump through trying to get The Lodger better services in pre school and trying to plan for primary school next year. 
And then there's The Lodgers ongoing development and attempts to understand the world around him. 
The Lodger is four and the behavioural challenges of PWS are showing through. Possibly due to lack of understanding and still some difficulty  with communication the Lodger is testing his surroundings la…