The Lodger and Us

If CPAP was Ironman, The Lodger would be the winner! That's the quote of the day. I think we better get it printed on a t-shirt.  The Lodger, Champion of CPAP 2018 For those without knowledge of Ironman, it's an endurance event that the better half took part in last weekend. This year was the Ironman 70.3, a 1.9km swim, 90km cycle and a half marathon, all to be completed within a time limit. The Lodger and I were the Ironman Support Crew. In the Lodgers words, our job was to 'Cheer on Dad and see his medal at the end!'. Two boxes ticked and to quote The Lodger " Well done Dad!" Ironman Success We had many celebrations this summer. A New house, a family wedding, birthdays, triathlons, Ironman... but in the world of living with PWS, we have some PWS celebrations too. Obviously, being a champion of CPAP (For those without knowledge of CPAP click here ) is now close to the top of the list, possibly even knocking down the Ironman medal f...

"Gabh mo leithsc é al... Gabh mo leithsc é al.... Gabh mo leithsc é al....." I drove along perplexed.  99.9% of the time I understand The Lodger but there's always that 0.1% that will leave me completely at a loss. I'll ask him questions to see if I can figure it out and most of the time it works but not this time.  Due to PWS, The Lodger's speech is delayed. He can say all the words in the world now but he misses the last syllable of most words and some sounds are still difficult for him but he's working on it. This means that to the untrained and unfocused ear, some words sound alike. Just the other day he announced at breakfast "Mum, I'll help you" and I said, "Fantastic, superstar!" . His father and Auntie looked on aghast until they realised he said help, not hate! And just like everything in the world of The Lodger, practise and patience will get him there. However this particular time, on the drive in ...

Today I asked The Lodger to be quiet and to stop moving for one minute.  These are words I thought I'd never say to my child with Prader-Willi Syndrome.  He lasted about two seconds before he was off on a tangent while simultaneously moving every limb. He thought it was hilarious and I couldn't help but join him in laughing.  I had flashbacks to the tiny baby who could only moves his eyes when he was born, to the the little boy who worked so hard to reach every milestone and who now can talk and talk and talk..... and move! On a recent family day out, it was obvious to us his body was getting tired. Due to Prader-Willi Syndrome, The Lodger tires easily as he has low muscle tone. We'd brought the buggy along to give his legs a rest but any mention of sleep was out of the question. The Lodger has FOMO (fear of missing out!). He eventually agreed his legs were tired but he emphasised many times that he was not, so he sat in his buggy for short stints as ...

At this stage we probably all feel that we've gotten a pretty decent grasp of the language we speak every day. It's taken time to develop from when we were toddlers, into the school years, teenage years and into adulthood where, if we are to be honest we're still learning. Admitting it may be another story. Like some people still don't know what a tracker mortgage is?? Anyway this is a throwback to those wonderful moments where grammar really doesn't matter and the basic concepts of language will do just fine. I'm sure all children experience the same development possibly at a faster rate but I can only speak for one and we're enjoying tipping through the minefield of the simple English language. The Lodger is just gone four and is learning to speak. He's finally decided it's time. We are glad he's finally made the decision. The sounds started a long time ago, followed more recently by the one syllable words and now we're deep in...

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...

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...

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...