Skip to main content

Sick but hungry, hungry, hungry

It is one of the most heartbreaking things to see your child struggling. 
The Lodger is sick.... again. 
Since starting school, he seems to be catching every bug going.

Last October in the midst of Storm Ophelia, The Lodger vomited for the first time. For those not in the know, people with PWS rarely vomit. It can be a sign of serious illness. He showed no sign of illness beforehand. In fact, we were out for a walk when it happened. His version of the story is very to the point...

"We were walking and then I stopped, my mouth opened and the sick came out!"
Straight afterwards, he asked for his snack but a frantic call to his PWS nurse, as I sought to find out how I'd know if his stomach was rupturing, emphasised the point to him that he'd have to wait a little while for his snack. 

The Lodger has 100% respect for what his PWS Nurses and Doctors say.

And as an aside, I didn't tell The Lodger that I thought his stomach was rupturing. I remained somewhat calm but internally I was in crisis mode. A phone call to my beloved, who directed me to phone his PWS team as I picked The Lodger up and started walking towards the GP!

Since then, he's a had a few tummy upsets and ears/nose/throat infections.

And having PWS means that food is still very very very important even when you're sick.
Actually, it's one of his signs of illness. The Lodgers interest in food heightens when he's under the weather. Everything becomes about food and the anxiety of what meal, when and where increases!

When he had his tummy bug, it was torturous for him

He wanted to eat but his tummy was sore. He didn't want to eat because his tummy was sore but he wanted to eat because he needed to. 

The drive to eat is so strong. 

Currently, he has a really bad throat infection. He wants to eat. 
One spoon of mashed banana followed by a five-minute rest.
An attempt at another spoon. 
'Mum I can't eat it. Can I have something different?'

'Mum, I still need my lunch, my afternoon snack and my dinner.
Mum, what will I have.
Mum, don't forget my meals. 
Mum, has Dad gone to buy my dinner.
Mum, I will need to have my lunch and my afternoon snack and then my dinner. 
Mum, does Dad know?!'

He's zoned out now. He's exhausted. He's almost asleep and I hope that when he wakes he forgets about lunch and afternoon snack, that he just thinks there's only dinner to come. 

Fingers and toes crossed that this bout of illness is the last and that we have our caring, smiley, less food obsessed boy back soon!


Popular posts from this blog

The Lodger on tour!

The Lodger recently had his first school tour. The week leading up to the much-anticpated school tour started with an unexplained bout of challenging behaviour. 
The Lodger went back to school after his midterm break on Monday. He didn’t have the best day, a bit tired, a little bit oppositional, but we put it down to back to school feelings (and I kept my fingers crossed that he wasn't getting sick!)
Tuesday continued in the same breath! I was perplexed as he was fine at home, his usual happy Lodger self! I had a chat with his teacher and SNA after school and no light was shared but we decided maybe it was school tour excitement?? 
That was until, Tuesday evening and myself and the lodger were  having a little chat about things using my “I’m not trying to find out anything but really I am” strategy.... and for some unknown reason, he had gotten it into his head that he wouldn’t be having snack or lunch on his school tour.
Alarm bells rang, Take a breath! You think you have all bases c…

This is Real

This is real.
This feeling. 
This comfort.
This feeling of being surrounded by like-minded people.
A warming safety feeling.
No stress.
No panic.
No fears.
The joys of the Prader Willi family weekend.

A time when you release your child to the elements, safe in the knowledge that if anything was to happen the Prader Willi Police (PWP) are everywhere. Watching. Like undercover agents hiding in the shadows. But not actually in the shadows. 

We are a fun crew. A happy crew. A proud crew. We look out for each other with a nod and a smile. A simple nod of 'I've got this, fear not'. It's lovely to embrace these moments. The Lodger loves these weekends. If excitement wasn't sometimes such a chore it may well be exciting. A time when he can meet all his like-minded friends and enjoy the freedom although he's being watched by so many knowledgeable eyes. 

Another dad once told me; "We, the parents are the experts of this syndrome". And those words have never left me. 

As I …

Easter Eve

It’s the night before Easter and all through the house, not a creature is stirring....
Oops wrong event! 
It’s Easter Eve and the Lodger has been busy over the last few days questioning all things Easter Bunny, most questions relating to whether the Easter Bunny knows about his special tummy.
'Mum have you told the Easter Bunny about my special tummy?' 'Mum, how did you tell him?' 'Mum, was it a letter? I didn't see you post it." 'Mum, what about you? You don't have a special tummy. Will you get a chocolate egg?' 'Mum, what is a chocolate egg?' 'Mum, I think the Easter Bunny DEFINITELY knows about my special tummy!' 'Mum, I think I really like Easter. Mum, the Easter Bunny will bring me special things." 'Mum, does he know I live here now and not in the old house.' 'Mum, what about our new house. Will he know where that is?' 'Mum, we don't live in the new house yet. Does the Easter bunny know?' 'Mum…