The Lodger and Us

The Lodger has had a summer filled of Champagne Moments. ( Thank you fellow PWS Mum for this phrase !) The IKEA Blue Chair This time last year, The Lodger started to weight bear. Since then, there has been daily physiotherapy and the motivation of Walter and the rest of The Muppets, the use of clever strategies to increase his confidence in using his legs rather  than crawling, weekly hydrotherapy to improve his strength, the removal and relocation of furniture to encourage him to take an extra step and a lot of praise and encouragement from us and family and friends to motivate him to walk an extra few steps everyday.  We were over the moon, thrilled to bits when The Lodger took his first solo steps in June  and with a lot of practice all summer, he can now walk independently! We have the Ikea blue chair to thank, as it acted like a walker he could push around the house. It scratched the floors but each scratch is a step taken, a reminder of the trem...

AFO's. Ankle Foot Orthotics. When I first heard these words, my heart ached a little bit more. I knew they would help The Lodger but here was something else we had to deal with and ultimately come to terms with.  Just last month The Lodger was fitted with AFOs. To the uninitiated these are also called splints. Splints. It's such a harsh word. It's an even harsher word when you attach it to your two year old little boy.  When we attended our orthotics appointment, I was hoping that the physiotherapist had it wrong, that he wouldn't need them. The Lodger as usual, smiled and waved through his assessment and it was concluded that he would need AFO's. The warrior in me, smiled and said 'Anything that helps him to walk is great'. Inside, I was sad. Here's another thing that The Lodger had to deal with.  As parents, we approach all the challenges The Lodger faces with positivity. AFOs were the last thing we wanted for our son but for them...

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...