Skip to main content

The Chocolate Holiday

The Lodger is now very aware that people eat different things to him. At meal times he'll point out if we are having the same meal and mention any differences between them. He'll show off his counting skills too... 'one piece of bread', 'two tomatoes', 'three different foods on my plate'. 

He's also very aware that there are food types he can't eat. 

We've chosen to keep The Lodger on a healthy, balanced, nutritionally dense diet. After too many hours.. months, probably years stressing about different types of diets - low carb, high fat, high protein, ketogenic, the list goes on... We've settled on a nutritionally dense healthy diet for The Lodger.  Every few months we'll fill in a food diary to get it analysed by his dietitian to make sure he's getting everything he needs. There's probably not many people who use My Fitness Pal for their 4 year old but it's a very useful tool to plug in his meals and get immediate feedback on his calorie count and nutrition! #PWSlife

The Lodger is entering the phase of hyperphagia (uncontrollable hunger) where he can put on weight easily without any increase in calories, so we're extra vigilant about portion sizes. 
This also means daily exercise is now even more important for The Lodger. He's a big fan of Cosmic Kids Yoga. The Lodger showed off all his exercises to his Granny when she was minding him the other day. Much to her amusement he rolled out his yoga mat and did his full repertoire, ending with his yoga phrase "namaste".

Yoga Time - Namaste

Easter/The Chocolate Holiday is fast approaching (2 days to go!) and as always we've a Lodger friendly Easter planned. This year will be different though. The Lodger knows other people will be getting chocolate eggs. 

'What will I have? I have a special tummy!' is his latest phrase. 

The Lodger knows he has PWS. We are very open about it with him and with everyone. It definitely eases his anxiety that he has his own phrase for when he's offered chocolate/lollipop/icecream/food from people who don't know about his special tummy. 'No thanks, my mummy/daddy have my snack. I have a special tummy!' is his reply. 

I do worry about the future. I'm not sure how long the above phrase will be The Lodgers go to reply to someone offering him food. He's inquisitive. He loves food. And the drive to eat is strong. He swiped a tomato from the counter when lunch was being prepared. The Lodger was lightning fast but luckily Action Dad was that bit faster and the tomato was retrieved without casualty. 

The Lodger knows the Easter Bunny knows about PWS. This was very important to him. He had many many many questions about what the bunny might bring and does the bunny know about his special tummy. The Lodger is busy working on prewriting skills, learning his numbers and letters and practising sitting at a desk for a long time for school in September, so a good guess would be books/toys to help develop these skills ;)

The Lodger busy doing his 'homework'. Getting school ready!

The Lodger currently doesn't mind people having different food types to him, as long as he has his version. People who might not know him very well tend to throw out the sympathetic phrase 'Aw, no chocolate/sweets/icecream, the poor kid!' but The Lodger really doesn't mind. 

He'll wake up Easter morning, see his Easter Bunny gifts, have his breakfast (an actual egg!), do some yoga, do his Easter Hunt for non-food treats with his cousins and enjoy a big family Easter lunch and that evening will tell us all about the great day and delicious food. The Lodger will prove once again, that although food is important (5 times a day without fail), it is possible to make a weekend where chocolate takes centre stage-  fun, happy and safe for him. 
Easter Basket from Playschool


Popular posts from this blog

Prader Willi Syndome - The Liam Neeson Effect

Firstly I can't say I am in any way qualified to discuss this subject. There are no letters before or in fact after my name. I went to college but didn't learn anything about stress, anxiety or Prader Willi Syndrome. And I don't get paid large quantities of money to discuss these topics.
But what I do have are a very particular set of skills, skills I have acquired over a 4 year period. Skills that make me a nightmare for people like you.  The last part is factually not correct but if it's good enough for Liam Neeson it's good enough for me.

My skills are a little different and totally self taught through nothing other that necessity. The necessity to deal with the wonderful symptom of anxiety in a 4 year old with Prader Willi Syndrome.  Again I'm only 4 years and 7 months into my journey of involvement with Prader Willi Syndrome so my experiences and thoughts are just mine and not the silver bullet of PWS. If it was, maybe more people would read this blog.
The Lodg…

The Shuffle Monster

Sometimes you enjoy spending time with your child. I'd even go as far as saying most of the time it's enjoyable.
But then there are those other times...
It's 5am. I know because I've checked the phone, undetected, hopefully, as The Silent Shuffle Monster makes his way through the darkness. The Lodger is awake.  I always check the time in trying to understand this next crazy symptom of Prader-Willi Syndrome.  The dreaded early waking.  I not sure on the specific reasons or causes for this. Possibly hunger or a low blood sugar level or possibly anxiety relating to the 'Will they remember to give me breakfast?' A consistent worry in the world of PWS.

Ive captured this moment before, the waking and slow approach, It happens like this. The Lodger wakes, reaches out turns off his sleep apnoea machine and carefully removes his mask. He then slips carefully from the bed making sure not to wake Walter and pulling the covers back up on him. Important not to wake wake Walter. Th…