The Lodger and Us

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...

Today, we visited a toy shop with The Lodger. We did this to see if there is anything that he would really love Santa to bring him. We’ve been reading the toy catalogue, showing him tv ads of toys he might like but so far, we are coming up short. The Lodger has only one Christmas wish request.... and that can't be bought in a shop!  The Lodger visiting a Christmas shop In classic Lodger style, he has set us a Christmas challenge.... Recently, The Lodger's Auntie asked him what was Santa bringing? The Lodger without hesitation replied  'Walk'. 'A walk?'  I asked. 'Yes!'  he said with the biggest smile on his face as he pointed to outside. I explained that Santa might be so busy that day, bringing gifts to all the good boys and girls all over the world, that he might not be able to bring The Lodger for a walk. I asked  'If Santa can't go for a walk, what else would you like?' 'Dog!'  The Lodger replied wit...

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...

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...

 Milestones! A baby's first year is all about milestones. For most people baby milestones mean: Rolling Over, Sitting, Crawling, Walking... For us milestones are a little different. I remember texting my parents from NICU when The Lodger was 5 days old to tell them he moved his arm today. It was litreally just that, he lifted his arm and it fell back down!! In our little bubble, this was a huge moment. This happened before the diagnosis of Prader-Willi Syndrome so we were still living with the hope that The Lodger was just taking a little bit longer to settle into the world than other babies. The Lodger never required oxygen once he got home, which was a great relief to us. However due to a dislocated hip, he was in a harness for 8 weeks. I had completely forgotten about this until I had a look through his appointment diary. The dislocated hip meant a weekly visit into hospital to get the harness refitted. We used to love the day before the harness refit, as this wa...