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If CPAP was Ironman, The Lodger would be the winner!

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If CPAP was Ironman, The Lodger would be the winner!

That's the quote of the day. I think we better get it printed on a t-shirt. 
The Lodger, Champion of CPAP 2018

For those without knowledge of Ironman, it's an endurance event that the better half took part in last weekend. This year was the Ironman 70.3, a 1.9km swim, 90km cycle and a half marathon, all to be completed within a time limit. The Lodger and I were the Ironman Support Crew. In the Lodgers words, our job was to 'Cheer on Dad and see his medal at the end!'. Two boxes ticked and to quote The Lodger "Well done Dad!"

Ironman Success


We had many celebrations this summer. A New house, a family wedding, birthdays, triathlons, Ironman... but in the world of living with PWS, we have some PWS celebrations too.

Obviously, being a champion of CPAP (For those without knowledge of CPAP click here ) is now close to the top of the list, possibly even knocking down the Ironman medal from first place. The Lodger had his review with his CPAP Doctor today, who told The Lodger he's a star patient and asked us what's the secret. Hand on heart, I told the doctor if he was to ever to take the CPAP away, we'd have a distraught boy. He loves his CPAP. It helps him go to sleep. I think he would genuinely miss the sound of the air if he didn't need it anymore. And in even better news for us, the beep beep beep the machine makes when it alarms due to air leaking might be making an exit from our world, as The Lodgers mask will be changed next week to a better fitting size. We can only hope! 

Hospital Waiting room fish!

And for those who want the knowledge, there's no real secret to The Lodgers love for CPAP... other than plenty of patience and perseverance at the beginning, coupled with plenty of over the top praise, continuously, every day. 

Over the summer, we've been tackling strategies for helping with emotions, making mistakes and asking for help. The everyday challenges of having a faulty hypothalamus means that emotional control is difficult for the Lodger. 

The Lodger gets very frustrated when he finds something difficult, so I've purposely set him difficult tasks in Parent School over the summer so I could teach him to ask for help.  Parent-school has kept us focused over the summer. The survive summer chart made in week one of the holidays has kept us all sane and focused. 

Surviving Summer 101


If The Lodger accidentally makes a mistake, like knocking over a glass, he can get very emotional. I've not been going around accidentally on purpose spilling glasses of water, though in hindsight maybe I should have but if he made a mistake, I've been really emphasising that everyone makes mistakes sometimes and it's ok.

We were out recently for a morning snack in The Lodgers new favourite spot, and the lady accidentally brought a hot milk with chocolate on top. I immediately asked for a replacement (milk minus the chocolate) and started to explain to the Lodger what happened, when he looked at the lady and said 'It's ok, everyone makes mistakes!' He then looked at me and said really loudly 'Mum, thanks for rescuing me from the chocolate! You are great at rescuing me!'. 

I almost high fived myself, double success. Parenting win squared!

The rescuing didn't stop there. Over the Ironman weekend, the restaurant messed up The Lodgers order. The one order you don't want to be messed up. You can mess up mine. You can mess up the other halfs but please don't mess up the over-anxious child with PWS order. 
But they did, and not once or twice.. but fourth time lucky!! 

The Lodger found it hilarious. 
'My Mum and my Dad are rescuers now! I love my Mum and Dad for rescuing me! The silly chef keeps making mistakes!'

I think we'll get t-shirts made! The Parent Rescuers 2018

Today has been a high emotion day. Not only was there a hospital appointment but it's my birthday. The Lodger loves birthdays. They are his favourite sort of day and coupled with his favourite place to visit, emotions were running high. So high, that my plan to have his hair cut was postponed until after his hospital appointment. The Lodger just couldn't handle the excitement. 

So much so, that when his CPAP Doctor asked for a high five, The Lodger looked at him and said "No thanks, I'm feeling emotional!"

Yes, we've had a breakthrough. Over the summer, when The Lodger has been feeling feelings, he'll tell us he's emotional. Granted, sometimes he'll use it as an excuse to try to get out of tidying up but that's also joyously being six years old. 



Currently, The Lodger is drumming a happy birthday song, before we sit down for dinner. He started this day, staring in my face and whispering to wake me up 
"Mum, ask me what today is?'
Me "What is today?"
The Lodger "It's your birthday and it's going to be a great day!"

And it has been........ even with all the emotions! 

Birthday morning cuddles! 










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