Skip to main content

The beginning

Image
By
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...



Labels:

Comments

Post a Comment

Popular posts from this blog

Turn around and go home.

By
Prader-Willi Syndrome. It raises its head when you least expect it. Although in hindsight it was totally going to appear because we did everything we weren't supposed to.  The Lodger and Little Bro walk in the woods (not today!) I'll set the scene. It's a lovely autumnal Sunday. The sun is shining, it's not raining and it's not cold. A walk would be just the ticket before The Lodger has his Sunday movie. As you know, routine is important. Movies can't be missed.  We decided on our route- the route we call the castle route. You guessed incorrectly, it doesn't feature a castle but if you go off path and really crane your neck you might just glimpse one.  However when we got to the woods, I switched the route up. I don't know why. I just did. A moment of spontaneity. Anyway Hindsight. Lesson learned.  The new route meant a bit of climbing, so a lot of helping The Lodger and for The Lodger he wasn't able to continue his telling of the story he paused ...
Post a Comment
Read more

Steak is my favourite animal.

By
By Rory The Lodger loves cows. They are his favourite animal. They are also his baby brothers favourite animal because the Lodger decided they are.  Cow watching! The Lodgers birthday was recently. A huge day in his and our life. 10 years into our journey of discovery and all the other things Prader-Willi Syndrome throws at you. He wanted the perfect birthday. Don't we all on our birthday. Unfortunately the Lodgers idea of the perfect day for our birthdays doesn't always live up to his high standards. Or what you'd actually like to do on your birthday. And this can lead to unhappiness with the plan.  Things have to happen certain ways. And sometimes for example if I had a glass of orange juice for my last birthday breakfast I obviously have to have one this year. And probably, every year. Routine is important. We created that monster ourselves. This year my birthday was surrounded by much sobbing and stress as when the cake didn't work first time (and I was OK with it, ...
Post a Comment
Read more

Hunting Nuns

By
By Rory Today we went hunting nuns. It a past-time I hadn't expected to be partaking in when I woke up this morning but that's what was decided we would do so we did it. I should explain.  The Lodger loves witches. His favourite witch is the Grand High Witch.  While some years ago we worked through the logic that the Grand High Witch was not real we discussed actors.  Now obviously, his favourite actor is Angelica Huston.  She lives in America so we learnt everything about her.  We learnt she went to school in Ireland  In Kylemore Abbey.  We now visit Kylemore Abbey. Alot. The Lodger likes the house which was then the school.  He likes the bus to see the Connemara ponies and the Kune Kune pigs. I like the gardens.  We now go there to hunt nuns.  Unfortunately today we didn't catch any nuns but we did do some research. We investigated every picture of the nuns. We read all about the nuns. We looked in odd places in case a nun might be the...
Post a Comment
Read more