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The incident of the strawberry and the horrible beans!

We have always loved eating out! We also happen to live in a town that loves food. How do I know this? Well it's a town that has so many recommended restaurants that it is often difficult to get a table at popular times!  


Last night we went out as a trio (The Lodger and Us!). When we first received the diagnosis of PWS, eating out was one of the things we thought we'd never get to do as a family. We couldn't have been more wrong. The Lodger not only loves eating out, he's brilliantly behaved at eating out and due to his super power of always finishing every meal, he gets great praise from all the waiting staff.
To quote him "Ah thank you! The dinner was delicious. Yum Yum Yum!"
Granted it does take some pre planning to ensure there is something that The Lodger can eat. The kids menu generally doesn't suit his diet.  We bring his own plate from home. His small portion of food would look minuscule on a big restaurant plate and as the eye can deceive the brain …
Recent posts

The Sticker Book

The Lodger is literal. There is no in between, there is no might mean something else in his world. Everything is as it is and sometimes this makes for funny conversations...

Such as the day we were having a tight-squeezy-hard to believe this boy started life with such low muscle tone-hug and I said 'O mummy bear loves The Lodgers hugs'... 
This was met with a laugh and the factual statement of
'You're not a mummy bear, you're a mummy person!'. 
I couldn't argue with that.
Or the day he got his Easter Holidays (break!!) I collected him from playschool and I was met with a super excited boy asking
 'Have you packed the bags? Where are we going? I'm so excited.We're going on holidays'.... 
I immediately filled with gut wrenching dread as I looked at the happy boy and had to break the news that Easter holidays really means Easter break. 
A break from playschool, a break from routine. I held my breath as he took this in... it's a five minute walk to …

The Chocolate Holiday

The Lodger is now very aware that people eat different things to him. At meal times he'll point out if we are having the same meal and mention any differences between them. He'll show off his counting skills too... 'one piece of bread', 'two tomatoes', 'three different foods on my plate'. 

He's also very aware that there are food types he can't eat. 

We've chosen to keep The Lodger on a healthy, balanced, nutritionally dense diet. After too many hours.. months, probably years stressing about different types of diets - low carb, high fat, high protein, ketogenic, the list goes on... We've settled on a nutritionally dense healthy diet for The Lodger.  Every few months we'll fill in a food diary to get it analysed by his dietitian to make sure he's getting everything he needs. There's probably not many people who use My Fitness Pal for their 4 year old but it's a very useful tool to plug in his meals and get immediate feedback…

Words I thought I'd never say to my child with Prader-Willi Syndrome

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 we strolled around The Zoo…

Do you want to hear about my day?

The Lodger loves telling stories and his favourite story to tell is about his day. It's a joy to watch his face light up as he starts each new day telling us about his day yesterday. 


It's also a stark reminder of the hard work he's put in over the last four and half years. We've gone from speaking with our hands using Lamh (Simple Irish Signs), using cards to prompt words(PECS), to using a handful of words and cued articulation (to show him where the sounds come from), to finally to talking in full sentences. 

My job as an interpreter is fading fast and I'm delighted for him. The fact he can now communicate with mostly everyone has made his day to day life easier.  Recently more and more strangers are clearly understanding what he's talking about and he'll happily chat away with them FOREVER!

It does mean we are steadily entering a new phase of PWS.... Perseveration!

The Lodger gets 'stuck' on a topic, he will repeatedly ask the same question over and …

I hate food

I hate food.

Now don't get me wrong, I know food is vital for life and choosing a healthy diet is something myself and my husband have always done, long before Prader Willi Syndrome came into our life. Truthfully, we might have felt a lot less guilty when it came to having a  takeaway and treat food but we have always chosen to fuel our bodies healthily. 

Then came PWS and we made our home a safe haven for our son right from the beginning, right from diagnosis day 1st August 2012. We cleared out the junk food, we put our rule book into play; No eating outside the kitchen, no free access to the kitchen, healthy food fills our fridge and cupboard... we've made our home as secure as we possibly can.  And for 4 years and 15 days we never mentioned the word 'Hungry' infront of The Lodger. 

And then that day came. The day we never wanted to have. The day we wished wouldn't happen... as part of us has always hoped he'd be the one person with PWS not to feel hungry...

'…

The Shuffle Monster

Sometimes you enjoy spending time with your child. I'd even go as far as saying most of the time it's enjoyable.
But then there are those other times...
It's 5am. I know because I've checked the phone, undetected, hopefully, as The Silent Shuffle Monster makes his way through the darkness. The Lodger is awake.  I always check the time in trying to understand this next crazy symptom of Prader-Willi Syndrome.  The dreaded early waking.  I not sure on the specific reasons or causes for this. Possibly hunger or a low blood sugar level or possibly anxiety relating to the 'Will they remember to give me breakfast?' A consistent worry in the world of PWS.

Ive captured this moment before, the waking and slow approach, It happens like this. The Lodger wakes, reaches out turns off his sleep apnoea machine and carefully removes his mask. He then slips carefully from the bed making sure not to wake Walter and pulling the covers back up on him. Important not to wake wake Walter. Th…