Monday, 14 March 2016

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)