The Lodger and Us

My phone beeped early this morning. I picked it up and smiled. There on the screen was a reminder that today was the 1st anniversary of the day The Lodger hugged back.  Since that day, I must have received a hug every waking hour. The Lodger wakes and hugs you, he hugs with all his strength, he hugs when he's really happy, when he's sad, before he goes to bed, to say goodbye,  he hugs you and means it.  The Lodger has severely low muscle tone and as a result, his milestones are delayed. Physiotherapy plays big role in his daily activity. He's almost two and a half years old and unfortunately he hasn't started growth hormone therapy yet, so every milestone reached is through his own determination.  The Lodger has been hugged everyday since day one. I often think how unbeknownst to us, while we were focusing on crawling and teaching him jigsaws, somewhere inside him, he was working towards hugging Mum and Dad back.  His latest skill is cruising...

This morning I woke up in a panic. I had one of those dreams that seemed so very realistic that I thought it was happening right at that moment. The Lodger was given an empty selection box with the task of completing a treasure hunt to fill it up with all its chocolate goods! Somewhere in the dream was the Easter Bunny without the PWS memo!!  If someone had ever told me that one day a dream featuring a selection box would cause me so much stress, I would never have believed it.  We've chosen to not give the Lodger any typical food treats. There's no biscuits/ice-cream/cake/chocolate/crisps/sweets in our house for him.  Our thinking on this is that if he never has it, he'll never miss it.  The Lodger is only two and I know there will be many food challenges for him to face as he grows older but for now all we can do is be prepared and make the healthiest choices.  As I was growing up, birthdays were always filled with Mums Chocolate Cake. Every year she m...

The Lodger is small. He's 22 months old but is still fitting perfectly into his 12 month clothes. When I see him next to other kids his age, he's tiny!  We meet with the Dietician a few times in the year.  Yesterday was that day.  I'm always nervous before a visit to the Dietician. Has The Lodger grown? Has he put on enough weight? Has he put on any weight? Too much weight? Are we giving him enough food? Too much food? The right type of food? Is he on the right type of diet? Is he getting everything he needs nutritionally? Are we too strict? Are we doing the right thing? The Lodger gained in weight and height! We rejoiced! He's still on a low percentile but his Dietician is happy with his growth! Children with PWS often struggle at the start to put on weight and then around 2 years old they can rapidly gain weight. Research has recently shown that the rapid weight gain can start before the insatiable appetite begins.  It was five months since ...

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 pa...