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!





Comments

Popular posts from this blog

Turn around and go home.

Prader-Willi Syndrome. It raises its head when you least expect it. Although in hindsight it was totally going to appear because we did everything we weren't supposed to.  The Lodger and Little Bro walk in the woods (not today!) I'll set the scene. It's a lovely autumnal Sunday. The sun is shining, it's not raining and it's not cold. A walk would be just the ticket before The Lodger has his Sunday movie. As you know, routine is important. Movies can't be missed.  We decided on our route- the route we call the castle route. You guessed incorrectly, it doesn't feature a castle but if you go off path and really crane your neck you might just glimpse one.  However when we got to the woods, I switched the route up. I don't know why. I just did. A moment of spontaneity. Anyway Hindsight. Lesson learned.  The new route meant a bit of climbing, so a lot of helping The Lodger and for The Lodger he wasn't able to continue his telling of the story he paused ...

Steak is my favourite animal.

By Rory The Lodger loves cows. They are his favourite animal. They are also his baby brothers favourite animal because the Lodger decided they are.  Cow watching! The Lodgers birthday was recently. A huge day in his and our life. 10 years into our journey of discovery and all the other things Prader-Willi Syndrome throws at you. He wanted the perfect birthday. Don't we all on our birthday. Unfortunately the Lodgers idea of the perfect day for our birthdays doesn't always live up to his high standards. Or what you'd actually like to do on your birthday. And this can lead to unhappiness with the plan.  Things have to happen certain ways. And sometimes for example if I had a glass of orange juice for my last birthday breakfast I obviously have to have one this year. And probably, every year. Routine is important. We created that monster ourselves. This year my birthday was surrounded by much sobbing and stress as when the cake didn't work first time (and I was OK with it, ...

Hunting Nuns

By Rory Today we went hunting nuns. It a past-time I hadn't expected to be partaking in when I woke up this morning but that's what was decided we would do so we did it. I should explain.  The Lodger loves witches. His favourite witch is the Grand High Witch.  While some years ago we worked through the logic that the Grand High Witch was not real we discussed actors.  Now obviously, his favourite actor is Angelica Huston.  She lives in America so we learnt everything about her.  We learnt she went to school in Ireland  In Kylemore Abbey.  We now visit Kylemore Abbey. Alot. The Lodger likes the house which was then the school.  He likes the bus to see the Connemara ponies and the Kune Kune pigs. I like the gardens.  We now go there to hunt nuns.  Unfortunately today we didn't catch any nuns but we did do some research. We investigated every picture of the nuns. We read all about the nuns. We looked in odd places in case a nun might be the...