Skip to main content

Champagne Moments

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


The IKEA Blue Chair
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 important milestone.


The Lodger as Ring Bearer !!
Each week his confidence in his own abilities grew. He'd forget to hold on and walk over to the window to see a truck (He loves trucks!). He'd get excited that someone was at the door and walk an extra few steps to see who was there. Now, he rarely holds onto furniture, he can walk all around the house. He can carry toys from A to B. And he's getting quick..... The thud thud thud on the floor is speeding up and it's a delight to hear!! 


The Lodger & Mum dancing on the beach!
In mid August, we finally got the prescription for Growth Hormone. As with any new treatment, we were expecting a few weeks for The Lodger to get used to it. The day the nurse was arriving, I had prepared him that he would be getting an injection but it was nothing to worry about and it would make him stronger.

The minute the nurse arrived, The Lodger pointed at his leg for his injection. While we were getting trained, he happily made us all a drink from his play kitchen and kept himself busy playing with his new bear the nurse had brought him. The time for the first injection arrived and The Lodger cheered, instead of cried. It's been the same way, every day since. We spend a good few minutes calming down a wriggling with excitement little boy before injection time and as any other PWS parent knows, time is precious when GH is out of the fridge! 

Within a few weeks, The Lodger's overall strength improved- from the tone of his body, to  increased vocal sounds and he has more energy, a lot more energy! 

His speech has improved. The Lodger is really trying to put words together and is relying less and less on the use of signs to communicate his needs. His vocabulary is building everyday. His latest phrase is 'Good boy'. 

Just today we were out for our walk and his mission was to walk to the next tree. He did it and turned around proudly to look at me and to announce 'Good Boy'! 

Growth hormone injections have quickly become part of our bedtime routine. In a funny way, it has become part of The Lodgers play routine too. Soon we are going to have oversized stuff animals around the house, as The Lodger WALKS around injecting them all with his toy screw driver! 
Giving injection to Dog

It's been a wonderful summer. 2015- The Summer The Lodger Walked!

Comments

Popular posts from this blog

To lock or not to lock, that is not the question anymore.

It’s approximately 4421days since we got The Lodgers diagnosis of Prader Willi Syndrome.   To save you doing the maths: twelve years and almost 2 months ago.  We’ve learned a lot in those twelve years- strategies to help distract him from food, tools to help transition from task to task, methods to help him calm down, strategies to keep us all going day to day….  We’ve met many experts in the field of PWS- from doctors, nurses, psychologists, researchers and a range of therapists from speech and language to occupational and physios.  We talk with many  PWS families- both with children older and younger than our boy, The Lodger.  I’ve often been asked if we lock our kitchen. Up until yesterday the answer was ‘not yet.’  Today I sat with him as I was helping him put on his socks. It’s still a tricky thing for him to do- even with all the helpful tips from occupational therapists over the years. Somedays he’ll do it easily, other days he needs h...

Turn around and go home.

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 ...

Diagnosis Day 10th Anniversary... Prader Willi Syndrome ten years on!

This day ten years ago we received a diagnosis of Prader Willi Syndrome for our baby who was just two weeks old at the time.  It was a day spent in the depths of grief.  Googling PWS but not wanting to actually see what this PWS thing was. Googling words like hyperphagia, scoliosis, sleep apneoa. Reading the long list of symptoms. Telling close family that we had an answer but needing to get our heads around it first. Typing in PWS Ireland but being too scared to actually click any links. Heart breaking sadness. Hugging The Lodger and promising him we'd make sure he would have an incredible life. I spent the day crying, holding my tiny baby and not really wanting to talk to anyone.  This boy is on fire! ;) This is how we spent our day ten years on!  7.30am - Get up, Get dressed. I haven't heard any sound from The Lodgers bedroom so I think he must be having one of his lie ons. I was wrong! When I open his door, there he is dressed and with a huge smile on his fa...