Skip to main content

Posts

Showing posts from 2014

Just smile and say it's nice to meet you!!

99% of people greet The Lodger like he's just any other kid- smile, joke, play etc., but then there's that 1%. The 1% of people I dread to see.
The pity brigade! 
"O isn't his life going to be tough!"
"O well that's your life over!"
"Challenging times ahead for both you of."
The list goes on....
The first time this happened, I smiled and  tried to say something but no words came out! 
I  walked away fast! I then felt guilty and sad as I should've stood up for my son. Now I'm prepared. 
I've my reply..  Yes I'm sure there'll be some challenges, like with any child but there'll also be lots of joyous celebrations! If anything he's thought me so much about life so far,. Yes it's heartbreaking. My heart will be forever broken as I know my son will face challenges the rest of us can't even imagine but in his short time already he has shown courage, bravery and determination far beyond what any adult could cope with. 
I…

I knew the question was coming!

I knew the question was coming. I could see it forming on the lips of the parent sitting across from me. She's holding her little girl of about one. I can sense it. She's about to ask 'What age is your little boy?'

There's a split second here where I hesitate. I can lie and say he's one. He's about the size of a one year old. He's sitting like a one year old. Crawling like a one year old. This will avoid the follow up look of surprise, the look of pity, the comments 'o he's small for his age' and the potential questions of why!

I sit and make up my mind. I tell her he's 26 months. I can quickly see her analyse him. She's probably not even aware she does it. I immediately follow it up with 'and your little girl?'

I keep the conversation going with the usual topics of parenthood - sleeping, outgrowing clothes, tiredness etc etc.,

Luckily the class starts before I'm quizzed further.

I don't hold back on spreading awareness. I…

A visit to the Dietician

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 our last visit. The changes were…

Happy Raising Side of the Cot Day!!

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 parents probably don't celebrate…

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!