Thursday, 8 December 2016

Prader Willi Syndrome, it's not always fun!

It's been quiet in the world of The Lodger of late and by quiet I mean so freaking busy there's no time to write about the trials and tribulations of Prader-Willi Syndrome. 

I guess it's also easier to write when times are good and when there's time for celebration but I guess if we're to be honest about Prader-Willi Syndrome recently there’s been a few more bad days. 

If it's not another disappointing hospital trip where your answers still can't be answered because let's face it they don't know all the answers, it's another hoop to jump through trying to get The Lodger better services in pre school and trying to plan for primary school next year. 

And then there's The Lodgers ongoing development and attempts to understand the world around him. 

The Lodger is four and the behavioural challenges of PWS are showing through. Possibly due to lack of understanding and still some difficulty  with communication the Lodger is testing his surroundings lately in school and also at home. If I was to guess maybe he’s also feeling the hunger now and not knowing best how to deal with it. Not that anyone of us would understand that.  Don't forget to add to this the 5am starts, early waking, another fantastic characteristic of PWS. The syndrome that just keeps giving. 



But all that aside The Lodger is still The Lodger. He can now open the stair gate and climb up or down all by himself, a surprise we both received at different times and at different ends of the stairs on separate days, both episodes resulting in the similar silent tickling of the back of the leg, the shocked jump into the air while screaming How the f*@# did you get here????!!! 

But once you calm yourself down, explain the dangers of stairs management (most probably to yourself since it keeps happening) while secretly delighted he made the first solo trip and holding in the smile all is forgiven until the next time.

And then you’re waiting looking forward to the next time.

Because in the world of Prader Willi Syndrome each little step for The Lodger  is a giant step for that same small baby that only 4 years ago couldn't lift his head.


The Lodger still Winning at PWS.


2 comments:

  1. Hi Emma, such an amazing blog. Our little boy has just been diagnosed with PWS and through the tears, smiles and laughs your blog has given me so many positives to look forward to. Keep on winning Lodger! x

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  2. Two new entries! I feel absolutely spoiled. Thank you so much and I'm so glad you haven't abandoned this blog.

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