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

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 las

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 there. But there were none to catch. We