Friday, 22 May 2015

49 seconds

49 seconds!

49 seconds!!!

49 seconds!!!!!!

The Lodger stood unaided for 49 seconds yesterday! 

In the world of most 2.5 year olds, this would not be big news but in The Lodgers world this is  'Hold the headline' news!! 

We sneak physiotherapy into every activity, from practising standing in the back of Daddy's parked jeep to introducing new toys on a low table so he has to stand. As tough as daily physiotherapy is, it certainly pays off! 

Celebrate 49 seconds solo standing... we  are looking forward to 50!! 

Sunday, 10 May 2015

No Doubt, No Chance, No Disappointment

The Lodger was diagnosed with Prader-Willi Syndrome when he was just two weeks old and like the majority of other parents with children with PWS, it was something we knew very little about. 

We were warned to stay away from google, as a lot of the information is outdated but in a world that is reliant on the internet, we didn't last long.

I read everything, the good and the bad. Luckily there are some fantastic PWS organisations around the world to get the right information from. We've had and continue to have great support from PWSAI in Ireland and very easily accessible information from other PWS associations in the UK, USA, New Zealand and Canada. PWS is rare, so the worldwide community makes up an important part of our lives now. Facebook groups are great for advice from parents worldwide. 

The Lodgers's interest in food is increasing. Other parents of non-PWS kids will often tell me their two year olds are the same but I don't think it could be to the same extent.

Every morning, without fail, The Lodger will sign for 'eat' and 'drink'. If he sees anybody eating during the day, even on television he'll sign 'eat'. The funny thing is, we never taught him the sign for 'eat'. He'll sign 'eat' when it's coming up to a mealtime and if we go anywhere he always asks will he be eating. He can get quite anxious in places he doesn't know about mealtimes and can get very excited when his meal is served.

'No doubt, no chance and no disappointment' is a PWS mantra we came across in the early days and it's something that is now very much part of The Lodgers routine.

No Doubt:
The Lodger eats five meals a day; breakfast, snack, lunch, snack and dinner. We are flexible with time but generally he doesn't go longer than 3 hours without having something to eat. 

No Chance:
The Lodger is never given anything extra and he does not have access to food. We have all our food in a pantry style press that is never left open. It is not locked at the moment but that may be something we have to do in the future to help keep The Lodgers anxiety around food at bay. We also, don't allow The Lodger to be in the kitchen by himself and we keep it as a purely functional room- just food preparation and eating. 

No Disappointment:
The Lodger, though only 2.5 years knows that he is never given extras, never given anything off anyone else's plate, never gets food outside of the kitchen, never gets food as a treat and is never left unattended with food.

We hope that by having these rules in place now, it will help him when the uncontrollable hunger sets in. 

A typical day in The Lodgers life involves eating about 800 calories. In comparison, an average two year old eats anywhere between 1000-1200 calories. As parents, we need to make sure he is getting everything he needs nutritionally in just 800 calories. The Lodger eats a low carb, healthy fat and protein diet. We track his calorie intake on myfitnesspal which breaks down everything he eats into his macronutrients, so we know exactly what he is getting everyday.The Lodgers weight is checked regularly to make sure he isn't putting on weight or losing weight. At the moment, he is following his percentile curve nicely. 

When The Lodger signs 'eat' and it's not a mealtime, distraction is our best tool at the moment to get The Lodger focused on other activities. He'll happily play and keep himself busy with his overflowing toy box. 

This Little Lion has challenges ahead of him but with our rules in place, we hope it will make his life a little easier. 'No doubt, no chance and no disappointment' 

Sunday, 3 May 2015

Another May, another milestone!

May is Prader-Willi Syndrome Awareness month. I could tell you all about the complexities of PWS. I could tell you all the symptoms. I could tell you about the medical interventions required. I could tell you about the therapies. I could tell you how the diagnosis changes you as a person. I could focus on the negative side of things.... but I won't.

Instead, I'll share with you the joyous moments. The milestones we waited for. The feeling of pride we have when The Lodger achieves something we never thought he would.

Just for one minute, think about your muscles that we mostly just take for granted. Think of the muscles you need to stand up from sitting. The strength you need in your core to stand tall. Think of the muscles you need to hold a book or to lift your arm over your head! 

The Lodger has low muscle tone. This means that everyday tasks we take for granted are an extra challenge for him. At birth, The Lodger could only move his eyes. It's been an incredible journey so far in seeing him get stronger and reach milestones.

The Lodger a few days old

Just today, he took climbing to the next level. As you watch the video, think of all the muscles he needs to use to climb. Look at his feet supporting him, his legs lifting, the strength in his shoulders.  Now think back to what I told you about him when he was born..... he could only move his eyes! 

 Video not playing, watch it on youtube here



Low muscle tone is just one symptom of PWS. Daily physiotherapy plays a big role in The Lodgers life. As The Lodger grows older, exercise will be important everyday to help him stay fit and healthy. 

To any parents who've just received a diagnosis of PWS, your baby will get there. I could never have believed that I now have to rearrange furniture to keep him on the floor. I could never have believed that one day he'd just take off crawling. We're close to walking now but that's how The Lodger does things. We wait and wait... and wait.... and then one day, he'll have it mastered and off he'll go!

And on that day, The Day The Lodger Walks there'll be BIG celebrations!! Watch this space.....