Skip to main content

The PWS Nightmare Before Halloween!!

The Lodger has many people in his life who love him, care for him and support him. We are very fortunate to have a wonderful network of family and friends who without question got on board with our PWS rulebook. The Lodger has a team of superheroes who work with him in areas such as speech and language, occupational therapy, physiotherapy and not forgetting his teachers and preschool assistant in Playschool. 



The Lodger at his most recent checkup was in the recommended zones for height and weight and his blood work came back perfect. This was great news to hear, as we are constantly stressing over 'Is he eating too much?', 'Is he eating enough?', 'Is he getting enough vitamins and nutrients?', 'Is he healthy?'

We, as parents, are constantly thinking about his meals and snacks, planning ahead for changes in routine and ensuring that he is eating a very healthy diet. The Lodger is never given extra, never given food from someones else plate and never allowed in a 'food zone' without supervision. 

Food Zones aren't just the kitchen! You'd be surprised at the amount of places food is freely available. Spend one day with the eyes of a parent of someone with PWS and you'll find food sources in places you'd never expect to find it. Food is everywhere..... and at the moment, Easter eggs are everywhere!!!

Easter, the holiday of hunting for chocolate eggs! As a parent of someone with PWS, this is The Nightmare Before Halloween!! 

We want The Lodger's childhood to be filled with as much fun and happy memories that we can create. The Lodgers playschool ran an Easter egg hunt were The Lodger hunted for little animals and stickers. He was delighted (so were we!)!

It's daunting to send your typical child to Playschool but a child with Prader-Willi needs so much extra care and watching. We are unbelievably lucky that The Lodger has a wonderful Playschool assistant and amazing Playschool teachers that watch out for him and keep him healthy and safe. 
There are some perks to PWS, while The Lodgers school friends chocolate eggs are well gone, The Lodger still has his little animals that have been carefully minded since he brought them home in his Easter basket. 



This year Easter happens to fall on The Lodgers's cousin Lottie's 5th birthday. There'll be an Easter treasure hunt that morning for the two of them to enjoy, with plastic eggs filled with non-food items. While most nearly five year olds don't even know what PWS is, Lottie has been planning a birthday party that will have healthy things to eat for her cousin, so he definitely won't miss out. We are incredibly proud and lucky to have her in our lives.

To Lottie, PWS has always been there. It's nothing new. It's just the way things are for The Lodger. On one level, Lottie understands PWS better than anyone. She'll be quick to tell anyone what The Lodger can and can't have. When The Lodgers uncle was staying with us, she went up to him and stated the rules 'The Lodger can't have chocolate or sweets, but he can have fruit, but only in the kitchen at mealtimes. Ok?'.

The Lodger thinks Santa has returned wearing green! (Yes, St.Patrick!). I'd spent the last few months telling him how Santa has gone to bed for a really really long sleep but upon seeing the man in green, all I've heard is 'HoHo is Up' in an excited tone with a big grin on his face! While I'm stressing about Easter eggs, in The Lodgers world the poor Easter Bunny isn't even getting a look in.....

Easter will happen, chocolate eggs will be exchanged but in the world of The Lodger, it's a fun filled treasure hunt with (Thank goodness for Tiger & The Easter Bunny) little toys to find! 

The Lodger is lucky so many people care for him, but this year instead of a toy for Easter, please donate to PWSAI (www.pwsai.ie)


Easter Hunt (2015)
Easter Hunt (2015)

Comments

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…