Happy Raising Side of the Cot Day!!

I sometimes forget that The Lodger has low muscle tone. You grow very accustomed to The Lodger just being who he is. It's only when I meet other kids the same age, that I realise how low muscle tone affects everyday things.

The Lodger is 22 months old now. Just yesterday, he was sitting in his cot when I walked past his room and glanced in to see him pulling himself up using the side of the cot. This is a momentous occasion! It took every bit of strength he could find to achieve it! He was so delighted with himself, as you can see in the photo!

As I cheered him on, I thought back to the little baby who could only move his eyes when he was born. The Lodger has physiotherapy everyday to improve his tone. His play time is all focused around how can this toy/activity make him stronger or teach him something new. The Lodger amazes me everyday with every achievement. He may only be 22 months old but his determination is stronger than most peoples.

Most parents probably don't celebrate the raising of the side of the cot BUT we most certainly did!

Happy Raising Side of the Cot Day!!

Comments

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.

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The Calm Before the Big News: A Quiet Moment, A Bright Future

When things are quiet, we don't tend to write. There's the odd update on The Lodger and Us instagram but there hasn't been a blog post in a long while. I'm happy to report that things are quiet at the moment. Quiet means all is calm and well in the world of The Lodger. When we're in this moment, I'm always half on edge waiting for a curveball but in our almost 13 years of the PWS world, you in a way get used to the quiet times, while waiting for that inevitable PWS unexpected but expected twist. The Lodger is watching his Friday movie, had the best yoghurt he has ever tasted (Plain and Greek if you were wondering, and yes he has had it many times before) and is looking forward to the weekend of not a lot planned. When I say all is quiet, it's our quiet, our unique normality of quiet that unless you're in the PWS world you probably wouldn't describe as quiet. Our kitchen remains locked. Our routine is our routine. Food happens at food o'clock....

The Lodger and Us

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