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Showing posts from March, 2014

Food

Food is everywhere.

The day after we got the Lodger's diagnosis, we were walking into the hospital and all we could notice was Food!!  Adverts for food, shops selling food, cafes, restaurants, a bus with an advert for a burger on it, people eating food... it went on and on! In the early days of learning about Prader Willi Syndrome our focus was almost entirely on trying to get our minds around hyperphagia.

Hyperphagia?

Defined as: 
abnormally increased appetite for consumption of food frequently associated with injury to the hypothalamus

In other words, a preoccupation with food that if left uncontrolled can lead to life threatening obesity. The part in the brain that tells us we are full, is broken in people with PWS. Even after eating, someone with PWS is hungry.

As parents, we both felt enormously guilty anytime we ate something. We worried and felt very anxious about how The Lodger was going to be able to live in a world that is filled with food. We ate a fairly healthy diet but wit…

Milestones in The Lodgers First Year

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 was bath day and …

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 and Us

I was looking back through photographs and videos  of The Lodger today and I quickly realised, apart from the fact he is growing up very quickly, he has achieved alot of things in the short time he's been here.

The Lodger is 20 months old now. He was diagnosed with Prader-Willi Syndrome when he was just two weeks old. 

I hope to document the highs (and lows) of living with Prader-Willi Syndrome.

Welcome to Our Life!