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Showing posts from May, 2015

49 seconds

49 seconds!

49 seconds!!!

49 seconds!!!!!!

The Lodger stood unaided for 49 seconds yesterday! 

In the world of most 2.5 year olds, this would not be big news but in The Lodgers world this is  'Hold the headline' news!! 

We sneak physiotherapy into every activity, from practising standing in the back of Daddy's parked jeep to introducing new toys on a low table so he has to stand. As tough as daily physiotherapy is, it certainly pays off!

Celebrate 49 seconds solo standing... we  are looking forward to 50!! 

No Doubt, No Chance, No Disappointment

The Lodger was diagnosed with Prader-Willi Syndrome when he was just two weeks old and like the majority of other parents with children with PWS, it was something we knew very little about. 
We were warned to stay away from google, as a lot of the information is outdated but in a world that is reliant on the internet, we didn't last long.
I read everything, the good and the bad. Luckily there are some fantastic PWS organisations around the world to get the right information from. We've had and continue to have great support from PWSAI in Ireland and very easily accessible information from other PWS associations in the UK, USA, New Zealand and Canada. PWS is rare, so the worldwide community makes up an important part of our lives now. Facebook groups are great for advice from parents worldwide. 
The Lodgers's interest in food is increasing. Other parents of non-PWS kids will often tell me their two year olds are the same but I don't think it could be to the same extent.

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…