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The Lodger and Us

I was looking back through photographs and videos  of The Lodger today and I quickly realised, apart from the fact he is growing up very quickly, he has achieved alot of things in the short time he's been here.

The Lodger is 20 months old now. He was diagnosed with Prader-Willi Syndrome when he was just two weeks old. 

I hope to document the highs (and lows) of living with Prader-Willi Syndrome.

Welcome to Our Life! 

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To lock or not to lock, that is not the question anymore.

It’s approximately 4421days since we got The Lodgers diagnosis of Prader Willi Syndrome.   To save you doing the maths: twelve years and almost 2 months ago.  We’ve learned a lot in those twelve years- strategies to help distract him from food, tools to help transition from task to task, methods to help him calm down, strategies to keep us all going day to day….  We’ve met many experts in the field of PWS- from doctors, nurses, psychologists, researchers and a range of therapists from speech and language to occupational and physios.  We talk with many  PWS families- both with children older and younger than our boy, The Lodger.  I’ve often been asked if we lock our kitchen. Up until yesterday the answer was ‘not yet.’  Today I sat with him as I was helping him put on his socks. It’s still a tricky thing for him to do- even with all the helpful tips from occupational therapists over the years. Somedays he’ll do it easily, other days he needs h...

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 ...

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