A BRIEF TRIP OUT

Keeping Robbie in sight with my scooter's mirror.

BIRTHDAY VIDEOS
19-03-2013

Below are videos taken of me unwrapping some presents.

(00:35) SURPRISE!

(3:32 minutes) First present.

 

(1:24 minutes) Wonder Woman

(1:25 minutes) You are my Sunshine...

(1:18 minutes) The Big 40

(57 seconds) ... Little Monkey

 

(1:39 minutes) Batman

 

 

(42 seconds) Amazonian Princess

 

(2:14 minutes) Batman towel for a wall hanging.

MY FIRST BIRTHDAY AT AGE 40

 

This is my first recognised birthday at home on the 19th March, 2013. Sam doesn't generally do birthdays. He's softened a bit and now recognises 5th, 10th, 13th, 20th, 30th, the big 40, and every ten years after. So I had better make the most of it!!

 



 

Pictures of the presents and food lay-out. First one with the lights on; the second in the dark. Strawberry mouse cake; mocha cake; warm hazelnut chocolate flavoured milk and - my favorite - sticky chocolate date pudding. Love the tealights.

 

Time to open one of the presents.

 

My second favorite super hero, Batman, on a pair of jocks. Hopefully will be able to start wearing clothes once I have a couple of operations on my legs soon.

Batman towel over-laid with another pair of Batman jocks (left) and a pair of Batman pyjama pants (right). I really, really look forward to wearing clothes.

 

Ah, my number one favorite super hero, WONDER WOMAN!! Sam could only find her in the men's underwear section.

Batman short pyjama pants

 

 

This birthday made me feel like The Hero's pants.

 

A sweet feast for a sweet fool. Sticky chocolate date pudding with vanilla ice-cream.

 

A colorful collection. Some of which will be going on the walls as hangings, such as the towel and any underwear that doesn't fit. Sam purposely bought the clothes either to wear or to hang in my room.

 

And he's planned for the 3D cards to hang above my bed when I eventually can sleep comfortably in a bed. I shall wake every morning with the bright sun smiling at me no matter the weather outside.



MOST IMPORTANT DAY OF MY LIFE

Tomorrow, the 14th of March, 2013, will be the most important day of my life. After persisting for several months Sam managed to secure an appointment with one of the world's

leading orthopaedic surgeons. What he decides or suggests regarding any possible removal of my useless and burdensome legs will define the rest of my life.

I am determined but not confident. I am quite literally sick with fear. As I lay in this bed I am terrified that I will be condemned to a life of fatal, bed ridden misery.

My joy will be beyond words if Dr M can help me and release me from a life-time of mind numbing horror of these legs that have robbed me of mobility, peace of mind, intimacy and love.

Robbie.

On the verge of hysterics I've been playing with my IPad every waking hour. Trying not to remember the words of a doctor some months ago: "You, will not find any surgeon willing to help you".




ANOTHER EXCITING...NOT...WEEKEND

 

Though relatively healthy.

 

Friday and Saturday had Turkish bread with mushrooms cooked in their own juices, tomato and avocado. Couldn't eat the sweet corn and snow peas as my teeth do not meet anymore so very hard to chew without choking. The raw corn and peas are Sam's. Not being able to sleep in a bed due to pain and inability to remain in position I spent 12 years sleeping and living in my electric wheelchair which resulted in my lower jaw moving forward so now I have a misaligned jaw and have to stick to soft foods or finely cut foods depending on their texture. I do not have to have everything pureed.

 

Actually, pureed food increases my risk of choking in my case, as it's too soggy so I can not manage the texture with my tongue that I do not have total control over when it comes to moving food around in my mouth. While in hospital I am always battling to convince speech pathologists that I can eat solid foods. Once I was not allowed any solid food for three weeks no matter what I or Sam said. As a result my jaw became weaker and gave me jaw ache when I started eating solid food again. I really do hate being treated like an idiot. I do know what chokes me and what doesn't. And I especially dislike it when Sam, who's been caring for me for 19 years, is ignored. We generally only get asked what I need when some drama happens like I refuse to eat my food or I have a choking scare.

 

 

Over the past few weeks Sam's been making us greek style plain yoghurt fruit shakes. Bullet blenders are great. Add emu oil, fish oil, coconut oil, cod liver oil (Vit D. Not getting much sunlight these days) and ground chai seeds (Sam grinds the seeds as they are too expensive pre ground) and a crumbled magnesium tablet to help increase calcium absorption. This helps me keep my weight down being confined to a bed. I never get constipated when at home. I have a piece of chocolate daily.

 

This evening's meal was some nicely cooked Basmati rice cooked in chicken stock Sam saves when he roasts chickens with added extra virgin olive oil. It wasn't expensive as he picked up 5kgs of the stuff half price a couple weeks ago. To make ends meet he always looks out for sales and has managed to halve our food bill. And now that we have moved from the Northern Territory of Australia, to Australia's NSW we can get fresh fruit and vegetables every Wednesday from a local market. More variety, fresher, cheaper and more available; saving even more.

It's been really hard feeding me as I've got to be in just the right position to lower the risk of choking. Sam's only had to whack me on the back a couple times when I've choked over the nine weeks that I've now spent bed ridden lying only on my left side.

My eye's not so puffy now as Sam's made a pillow roll out of cloth and pinned it to my sheets so it doesn't shift and rub on my eye.

Apart from the usual IPad playing that has been my exciting life for the past three days. Besides not being able to wear urodomes at the moment and further breakdown of my butt and groin skin. The problematic weeing situation has been mostly sorted out by Sam's ingenuity and can be viewed on the medical site linked to the right of this page. Or www.cerebralpalsymed.blogspot.com



EYE PATCH 6/03/13

 

 

Asked for a patch to be placed over my left eye that is being irritated by laying on my left side all the time. Hoped it would help but it didn't. Darn! So removed patch and removed pillow from under my head so some pressure taken off. Putting up with the discomfort of both the eye and no pillow. Distracting myself playing with IPad and spending some of the time playing an IPad game with Sam.

Had to take urodome off again due to penis being irritated from being crushed by my huge leg pillow!!! So a couple days having to wee on thickly folded towels again.



 

04/03/2013

 

Yep. Still looking like a 45 degree pretzel confined to a bed . My electric wheelchair's proving problematic to repair so a part has to be replaced. No idea how long that will take. Must be over six weeks now without it. Not that I will be able to sit in it for long...perhaps. My butt still has a fragile area despite not having sat on it for about eight weeks now.

 

Thankfully the end of my electric bed can be raised so when the head end is raised my butt doesn't slide down the bed as much. I long to go outside and participate in some form of physical activity. But in or out of my wheelchair it will be too painful for me. Have missed out on our first summer in NSW. It's now autumn. All Sam's summer activity plans for me have gone out the window. Probably also miss the up and coming annual Sydney Show we were looking forward to so much.

Turn forty soon. Hopefully the next forty years won't see me winning the title of "The Couch Potato King". I hate being a couch potato. How anyone can enjoy sitting around doing nothing much is beyond me. But at least at home I still have most of my privacy, can stay up as late as I need and have access to IPad, books, talk back radio and DVD's. And eat a balanced diet mostly of my choice to keep my weight down. Which is a lot more than many institutionalised. I must try and remain positive though severely depressed.

High-light of my day (04/03/2013) so far is that my swollen penis from being crushed between my pillow and legs has gone down so I can again wear urodomes and not pee onto a thick towel as I've been needing to these past three days. Life is so exciting!!! And a lot less smelly.

Face has become a little puffy on the left side due to the affect of only being able to sleep on my left side for the past several weeks. And the sores on my underlegs and groin area are worsening. And I won't start with a ramble about the never ending pain.