Skip to main content

The beginning

The Lodger was diagnosed with Prader-Willi syndrome when he was just two weeks old.

Two weeks old.

Two weeks old and your whole future changes in the blink of an eyelid because of one deletion from one chromosome.

Throughout the whole nine months of pregnancy, we thought everything was fine. We just had the usual first time parent nerves about becoming protectors of a tiny human.

Looking back, I don't think anything could have prepared us for the bombshell of hearing the diagnosis- Prader Willi Syndrome.

We had spent one blissful hour with The Lodger on his birthday. I will treasure this short time forever. One hour of no knowledge of medical terminology to describe your baby. For that one hour he was just The Lodger, perfect in every way. 

He was quickly whisked away to the neonatal intensive care ward where he would spend the next three weeks.

The Lodger had hypotonia. Hypotonia?We'd soon learn the medical terms for all the symptoms associated with PWS. 

Hypotonia = low muscle tone. 

The Lodger could move his eyes and nothing else. He couldn't move his arms or his legs. He couldn't cry. He didn't make a sound.

When you're in NICU, you live in a bubble and quickly learn the hospital routines and rotas, amidst learning how to be a parent of a baby who needs a little bit more care and attention than most. 

The Lodger required oxygen from the start, as his muscles were too weak so he struggled with breathing and keeping his oxygen saturation levels high.

Unlike most PWS babies, the Lodger took a bottle- although it took a lot of work and feeding techniques taught to us by the nurses caring for him. Feeding the Lodger was on a schedule from Day One, even before the diagnosis of PWS. 

Prader-Willi Syndrome is strange. Failure to thrive at the beginning where babies struggle to feed and gain weight and then anywhere from two years old onwards, an insatiable appetite and rapid weight gain. 

At 3 weeks old, The Lodger was finally able to come home- off oxygen but with a monitor, oxygen canisters and an oxygen machine at home.

This is where the journey continues...


Popular posts from this blog

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…

It's the most wonderful time of the year....

This is our sixth Christmas.
Our sixth Christmas since our son was born and diagnosed with Prader Willi Syndrome.

If you had asked me back then, how I thought Christmas would be now, I would have told you that we probably would have cancelled it. When we first got the diagnosis of PWS, all we could see was food..... food everywhere, at every turn, at every event, everywhere. How were we going to protect our son, keep him safe and enjoy an event that's filled with food?

And then we started to learn about some of the other complexities of PWS, the need for routine, the challenges of change, the importance of setting expectations and we were overwhelmed.

What we didn't know was how incredible our son would be.

Today The Lodger got his Christmas holidays (break!). His last week of school consisted of a topsy-turvy week of no homework, a change in the usual school day and a nativity play in which he played the role of an angel. 
How did he handle it all?

Without a hiccup.... well he wasn&…

Jingle bells... not until December!

The festive season is upon us once again.

The Lodger was banned from talking about Christmas until December 1st and it was purely selfish on our part in saving our sanity.  What we didn't expect was that The Lodger would take this new rule to the extreme.
If we were out and about in November, we would inevitably stumble across Christmas themed decorations. I don't think many children would stand there pointing at them and shaking their heads saying "O no, take it down. It's too early. Mum close your eyes. You'll be so cross if you see it!"
When Santa's grotto appeared in the local shopping centre, he was on his way to talk to the security man to tell him to remove it. If there were fines to be handed out for premature Christmas decorations, The Lodger would have made a fortune!! 
It was like walking around with a mini Grinch. Though, in all honesty, a mini Grinch who 100% loves Christmas. 

The 1st December could not come fast enough. 
"How many days are le…