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Showing posts from 2015

Our Christmas traditions versus PWS!

We're like the Who's in Whoville when it comes to Christmas. We love it. 

I remember when I was pregnant with The Lodger dreaming of future Christmases, that would be filled with wonder and magic... and carrying on Christmas traditions my own parents started- The advent calendar, decorating the Christmas Tree, Santa leaving a trail of chocolate money all the way around the house, the Christmas stocking at the end of the bed, the excitement I shared with my sisters on Christmas morning, the gathering of family, the annual chocolate Santa and a selection box, the Christmas morning breakfast, mince pies and chocolate kimberley biscuits in the run up to the main day, Christmas dinner with the delicious smells of spiced beef and red cabbage wafting around the house, the tower of chocolate profiteroles covered in mars bar sauce, the Christmas Day games, the Christmas dinner leftovers to be enjoyed on Stephen's Day, the gathering of friends...
The last three Christmases with The L…

What if Christmas perhaps... means a little bit more!

Today, we visited a toy shop with The Lodger. We did this to see if there is anything that he would really love Santa to bring him. We’ve been reading the toy catalogue, showing him tv ads of toys he might like but so far, we are coming up short. The Lodger has only one Christmas wish request.... and that can't be bought in a shop! 

In classic Lodger style, he has set us a Christmas challenge....

Recently, The Lodger's Auntie asked him what was Santa bringing?
The Lodger without hesitation replied 'Walk'.
'A walk?' I asked.
'Yes!' he said with the biggest smile on his face as he pointed to outside.
I explained that Santa might be so busy that day, bringing gifts to all the good boys and girls all over the world, that he might not be able to bring The Lodger for a walk.
I asked 'If Santa can't go for a walk, what else would you like?' 'Dog!' The Lodger replied with a grin. 'Santa can't bring a dog, he has no room in his sleigh. What…

Pigs In Jackets

We walk out of the shop. I ask the Lodger for his hand but he refuses. I explain, as you do, the dangers of traffic and that he must hold Mummy or Daddy's hand when near the road. He's frustrated and tries to explain to me what's wrong. But I just don't get it.  Then the Mummy steps in to understand the problem.  The Lodger explains using his range of words and signs that obviously he cannot hold Daddy's hand as he is carrying a pig.
Yes, a rather large invisible pig.
So the situation is resolved by Mummy taking the pig and the Lodger holds Daddy's hand and is happy. He keeps checking behind us as we walk and after some questioning I'm informed that he's just making sure the other pig is following.
Apparently we have 2 pigs.
We hop in the car, close the doors but Mummy has forgotten to let the pig in. The door is opened, the pig is let in, disaster averted.  We're good to go, the Lodger and pigs on board.

The Lodger loves animals. He has little interest in c…

Ditch it or Change it...

The first year after The Lodgers diagnosis every week there seemed to be something new that we would have to get our heads around as parents of somebody with Prader-Willi Syndrome (PWS). 

All we could see was FOOD!!

At birthdays there's cake.
At Halloween there's trick or treating.
At Christmas there's too much.
At weddings there's food.
At Easter there's chocolate.
At family and friends get togethers there's food.
Walking down the street, there's food!

And then there's the things we enjoyed doing, baking and cooking, eating out in restaurants, going for a coffee down in the village, a takeaway when we didn't feel like cooking, picnics up the mountains, a trip to the cinema with popcorn, an ice-cream on a sunny day, a hot chocolate on a wintery day... the list goes on!

In that first year, we enjoyed the last time we'd have our favourite cake on our birthday, a selection box at Christmas, an Easter egg, an ice-cream, a hot chocolate because we felt The Lod…

Our New Language

Since deciding (or having it decided for me) to change my area of life study to everything relating to Prader-Willi Syndrome a few years ago I kind of wonder what I used to fill my brain with.
Thanks to The Lodger, one of our new very mild super powers (and there are a few) as credited to the D.O.D. (David O'Doherty) is our ability to circumnavigate hospitals.  We don't need to follow signs or ask at the desk - you can almost sense where you need to go. Obviously this super power is totally magic and nothing to do with the over familiarisation of hospital and health facilities that the world of The Lodger has brought us to.

Pre-investing in The Lodger, it's not that I ever thought about exposing my super power, it's just that I never thought about it. Or that it was even there. Possibly ignorant to a whole world within our world that we just managed to avoid. But now we're in and it'll take more than a blindfold to keep me out of an endocrinology department.
And then …

The Big Step into the Land of Education

The Lodger has started his journey into the land of education!

Unfortunately due to cut backs, The Lodger was unable to receive an assistant. We were very fortunate to find a preschool that would take him to see how he would get on. The first day of school was the most nerve wrecking day and not just for me. The Lodgers support network were all equally nervous as he took the big step into education.

 I reluctantly dropped him over to preschool, helped him hang up his jacket and put his lunch bag away. I helped him walk to the table, sat him on the chair, fought back the tears and told him to have a great day.

Before leaving, I emphasised to the teachers, that I was 5 minutes away, to ring me at any stage and then I left.

I got home and spent the next 2 hours 45 minutes anxiously waiting for a call. I won't lie... I didn't clean the house. I didn't read a book. I didn't watch tv. I didn't do anything. I just sat on the couch, nervously waiting, checking to make sure my …

The Lunch Bag

The Lodger started preschool in the last few weeks. We found a preschool that have accepted him without a preschool assistant, a battle we continue to fight, trident in hand we fight on.
Anyway all he needed was a thermos lunch bag. So simple and yet these were the thoughts going through my head a few days before he set off.

I discuss with the Lodger where we should shop for his lunch bag and because it's a Wednesday and because it's just after lunch he's in a YES mood so my decisions are all agreeable.
This is a good day.

We arrive in the shop and I survey the options. He loves Frozen but I don't so I veto that. He understands. Daddies know best. He loves monsters too but it's all monsters crossed with lunches, so monsters eating and I'm not sure about how Pradar-Willi friendly that is. Then there's the happy strawberry bag with the lovely strawberry zips but I wonder if I buy that one will his teachers believe how serious PWS is if we're so casual about …

Champagne Moments

The Lodger has had a summer filled of Champagne Moments. (Thank you fellow PWS Mum for this phrase!)

This time last year, The Lodger started to weight bear. Since then, there has been daily physiotherapy and the motivation of Walter and the rest of The Muppets, the use of clever strategies to increase his confidence in using his legs rather than crawling, weekly hydrotherapy to improve his strength, the removal and relocation of furniture to encourage him to take an extra step and a lot of praise and encouragement from us and family and friends to motivate him to walk an extra few steps everyday. 

We were over the moon, thrilled to bits when The Lodger took his first solo steps in June  and with a lot of practice all summer, he can now walk independently! We have the Ikea blue chair to thank, as it acted like a walker he could push around the house. It scratched the floors but each scratch is a step taken, a reminder of the tremendous amount of work it has taken The Lodger to reach this…

The Lodger is 3!!!

It's meant to be one of the best days of your life. It's meant to be full of joy and amazement. It's meant to be filled with well wishes and time stopping moments as you just marvel at how incredible your tiny baby is.

It wasn't like that for us. Not at the start. 
We had one carefree hour with The Lodger before everything turned horribly wrong and we were left feeling empty and confused, angry, guilty and sad. Terribly sad.
The second time I met The Lodger  he was hooked up to wires, in a room with twenty incubators with tiny little babies all fighting their own battles. Beep.... beep... beep... beep beep beep. It didn't take us long to understand tubing, wires, machine sounds, hospital routines and hushed conversations. The frustration of trying to change a nappy with wires attached to his feet and chest. The feeling of inadequacy as you try to feed him 10mls of his bottle that he just won't take, as you manipulate his jaw to suck and wish you had another set of…

The Baby Elephant

It's Saturday night. For the last few weeks The Lodger has been struggling to keep his mask on at night and we're struggling to get up every half hour to check, so he's been promoted to our bed. 

The usual ritual is we put the lodger down about 8 o'clock, he asks for his mask and nose pads, we read a chapter from the horse book and off he goes to Neverland. 
So it's still Saturday night. It's gone ten. We're deep in the latest boxset when there's suddenly a bang...but not on the tele. Followed by the crying. We both sprint for the stairs to be met by this:

Although a little unhappier than the picture depicts.
The little baby elephant crawling around dazed and confused. We shouldn't have but we did. We had a little chuckle. The elephant was fine by the way. I assume he landed on his trunk.

Onwards on stop containing the sleeping elephant.

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!!