Another May, another milestone!

May is Prader-Willi Syndrome Awareness month. I could tell you all about the complexities of PWS. I could tell you all the symptoms. I could tell you about the medical interventions required. I could tell you about the therapies. I could tell you how the diagnosis changes you as a person. I could focus on the negative side of things.... but I won't.

Instead, I'll share with you the joyous moments. The milestones we waited for. The feeling of pride we have when The Lodger achieves something we never thought he would.

Just for one minute, think about your muscles that we mostly just take for granted. Think of the muscles you need to stand up from sitting. The strength you need in your core to stand tall. Think of the muscles you need to hold a book or to lift your arm over your head!

The Lodger has low muscle tone. This means that everyday tasks we take for granted are an extra challenge for him. At birth, The Lodger could only move his eyes. It's been an incredible journey so far in seeing him get stronger and reach milestones.

The Lodger a few days old

Just today, he took climbing to the next level. As you watch the video, think of all the muscles he needs to use to climb. Look at his feet supporting him, his legs lifting, the strength in his shoulders. Now think back to what I told you about him when he was born..... he could only move his eyes!

Video not playing, watch it on youtube here

Low muscle tone is just one symptom of PWS. Daily physiotherapy plays a big role in The Lodgers life. As The Lodger grows older, exercise will be important everyday to help him stay fit and healthy.

To any parents who've just received a diagnosis of PWS, your baby will get there. I could never have believed that I now have to rearrange furniture to keep him on the floor. I could never have believed that one day he'd just take off crawling. We're close to walking now but that's how The Lodger does things. We wait and wait... and wait.... and then one day, he'll have it mastered and off he'll go!

And on that day, The Day The Lodger Walks there'll be BIG celebrations!! Watch this space.....

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.

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 ...

Water, milk….

This week we were driving along and Younger bro started listing food. “Apple, raisins , rice cakes” “Ugh” said The Lodger “Mummm make him stop. He’s making me think of food and it’s not time for food!” So, I had to ask my four year old son to not mention food to his big brother who has PWS, even if it’s food that’s ok for his special tummy. I explained we didn’t want to make The Lodger sad. That sometimes food chat can making The Lodger emotional. Then The Lodger adds in ‘unless I talk to him about food first, then we can talk about it’. ‘Is this because of the Prader Willi?’ said Younger Bro “Yes!” said The Lodger. Being a sibling to someone with PWS is complex. There is always something new to navigate but at four years old he understands more than most people. “Water, Milk..” said Younger bro. “Mummmmm they’re things I drink with food. Tell him the rules again!” said an exasperated Lodger. Younger bro is sharp. I could see his cheeky knowing glanc...

The Lodger and Us

Search This Blog