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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.....


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It's the most wonderful time of the year....

This is our sixth Christmas.
Our sixth Christmas since our son was born and diagnosed with Prader Willi Syndrome.

If you had asked me back then, how I thought Christmas would be now, I would have told you that we probably would have cancelled it. When we first got the diagnosis of PWS, all we could see was food..... food everywhere, at every turn, at every event, everywhere. How were we going to protect our son, keep him safe and enjoy an event that's filled with food?

And then we started to learn about some of the other complexities of PWS, the need for routine, the challenges of change, the importance of setting expectations and we were overwhelmed.

What we didn't know was how incredible our son would be.

Today The Lodger got his Christmas holidays (break!). His last week of school consisted of a topsy-turvy week of no homework, a change in the usual school day and a nativity play in which he played the role of an angel. 
How did he handle it all?

Without a hiccup.... well he wasn&…

Jingle bells... not until December!

The festive season is upon us once again.

The Lodger was banned from talking about Christmas until December 1st and it was purely selfish on our part in saving our sanity.  What we didn't expect was that The Lodger would take this new rule to the extreme.
If we were out and about in November, we would inevitably stumble across Christmas themed decorations. I don't think many children would stand there pointing at them and shaking their heads saying "O no, take it down. It's too early. Mum close your eyes. You'll be so cross if you see it!"
When Santa's grotto appeared in the local shopping centre, he was on his way to talk to the security man to tell him to remove it. If there were fines to be handed out for premature Christmas decorations, The Lodger would have made a fortune!! 
It was like walking around with a mini Grinch. Though, in all honesty, a mini Grinch who 100% loves Christmas. 

The 1st December could not come fast enough. 
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