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!!

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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 ...

Diagnosis Day 10th Anniversary... Prader Willi Syndrome ten years on!

This day ten years ago we received a diagnosis of Prader Willi Syndrome for our baby who was just two weeks old at the time. It was a day spent in the depths of grief. Googling PWS but not wanting to actually see what this PWS thing was. Googling words like hyperphagia, scoliosis, sleep apneoa. Reading the long list of symptoms. Telling close family that we had an answer but needing to get our heads around it first. Typing in PWS Ireland but being too scared to actually click any links. Heart breaking sadness. Hugging The Lodger and promising him we'd make sure he would have an incredible life. I spent the day crying, holding my tiny baby and not really wanting to talk to anyone. This boy is on fire! ;) This is how we spent our day ten years on! 7.30am - Get up, Get dressed. I haven't heard any sound from The Lodgers bedroom so I think he must be having one of his lie ons. I was wrong! When I open his door, there he is dressed and with a huge smile on his fa...

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