KARAOKE
 

 

'Save the last dance for me'

 

'Save the last dance for me', continued.

 

Robbie dreams of standing in a walking frame one day. But that is entirely up to the public doctors who told him it's not important he be mobile. I'm sure they'd feel the same way if the shoe was on the other foot...not.



Extending our Family

 

Harry sharing his armchair with Russell

 

 

Sweet Lola, Harry and Russell finding little biscuits I threw to them in the leaves; happily sharing. We all miss Lola terribly. It's nearly been a year since her passing.

 

 

Lola sleeping on Harry

 

 

 

 

 

 

Found these brooches a couple of weeks ago. One for Robbie and one for me. They look so much like Lola. Robbie's going to have one fitted on a wrist band so he can see her all the time.

 

 

Below's the tattoo I had two years ago on my lower right leg. Harry, Russell and Lola's paws; actual size. So I carry Lola with me all the time as I do the boys. I'm so glad I had this tattoo.

 

 

Robbie misses Lola's kisses so much and her sleeping with him. So we've our eyes on adopting a little female rescues dog we saw on the internet today.

 

 

 

 

Russian children with CP travel to China for treatment

“Thirty-one Russian children suffering from cerebral palsy will undergo a three-month treatment in a hospital in north China’s Shanxi province,” a hospital official in Taiyuan, where the treatment will occur, has said recently.

 

“The children will be treated with both Chinese traditional medicine and western medicine in Shanxi Provincial Cerebral Palsy Rehabilitation Hospital,” said Guo Xinzhi, head of the aforementioned institute. Describing the treatment that the children will undergo in hopes of ameliorating their condition, he said, “Chinese acupuncture therapy will play a key role in the treatment.”

 

Approximately two-thirds of the children have already begun to receive the first stage of treatment in the hospital. “Thanks to the previous treatment, he can walk holding my hand and eat with a spoon now,” said a mother of a three-year-old boy and patient named Ivan. “I am hopeful after seeing him make progress in his movement.”

 

This journey for treatment is funded by the Danko Charity Foundation in Dagestan. Russia has sent children with cerebral palsy to the hospital for treatment regularly: twice a year since 2008. Approximately 30 children are sent each time. More than 200 Russian children, including those who are self-funded in their treatment, have received therapeutic care at the Chinese facility.

Cerebral palsy is “caused by damage to the brain before, during, or shortly after birth, which leads to a lack of co-ordination in muscle movement.”

 

Taken from: http://cpcerebralpalsytreatment.com/russian-children-with-cp-travel-to-china-for-treatment/

 

KEPT IMMOBILE BY "THE SYSTEM".

(6 part video with transcript. 4/08/2013. Unfortunately, Blogger will not allow videos over 100MB thus 6 videos. Thank you for your patience.)

 

Part 1



 

"My lower legs have ruined my life. Because of my lower legs I can't sleep in a bed; I can't be comfortable in any kind of wheelchair. I...for the physical care I do need it's far, far more complicated that it needs to be. The doctors know that by having me keep..." cont. Part 2

 

Part 2

 

 

"...that by having me keep my lower legs they are keeping me immobile. They are keeping me from sleep; from exercise; from social interaction; from so many things that we as humans think of as inalienable rights. But those rights have been taken away. And these rights have been calmly brushed away with the excuse that, "Oh, if we take your legs off, your lower legs off, you're going to be in a lot of pain..." cont. Part 3.

 

Part 3

 

 

"...your lower legs off, you're going to be in a lot of pain". They know I'm already in pain. I'm in so much physical and emotional pain that I want to die. That's why I came to Penrith...to give life one more chance. But as soon as I mentioned amputation so that I could sleep in a bed; so that I could roll over; so that I could have a great deal more independence, they said, "Oh, nobody would ever even consider that". Well, I..." cont. Part 4.

 

Part 4

 

 

"...nobody would ever even consider that". Well, I also had a talk to another doctor. He could see the value of taking away my lower legs so that I could move and do all the things I've already mentioned. But he's not allowed to go near me. These doctors are deliberately keeping me immobile. And they're not only ruining my life, they're destroying the life and health of my carer. Without my lower legs gone I will not live long enough and I get to see my carer..." cont. Part 5.

 

Part 5

 

 

"...long enough. And I get to see my carer die slowly as well, with no hope; with no happiness; with no desire for anything but death too. The Minister for Health, The Honourable "Laugh, Laugh" Skinner won't help. The HCCC (Health Care Complaints Commission) won't help and any organisations that have tried to help me with my situation have basically been told to leave this alone or you're in trouble. The Australian health system..." cont. Part 6

 

 

Part 6

The Australian health system is keeping me immobile.

 

 

"The Australian health system is keeping me immobile. And they're not just doing it to me. They're doing it to thousands of others like me and they're ruining the lives of their families and friends who care about them in the process.

 

Can we as human beings - as Australians - sit idly by while this is happening to thousands of people all over, even though we know it can be fixed! Come on people. What's going on here?!"

 

 





SECOND TENDON/MUSCLE RELEASE

 

 

Three days after more tendon release between legs on the 16th of July, 2013 - same tendons as my last release performed early last month- but not at the top of legs as agreed and discussed with the surgeon. I was not happy that my informed request for the tendons at the tops of my legs to be release was ignored again purely because of some being concerned over a short femoral nerve and short blood vessels which we've been over and over before.

 

The major muscles controlling my lifting or lowering of legs was instead partially cut which is good that it has now stopped the contractures forcing my knees up under my chin. But the tension/spasm - and pain - in my unreleased tendons is incredible at times; especially in this cold weather. I see no reason why they could not have been release even if it be very slightly. Sam, my carer, still can't access adequately my crease areas to clean me easily without causing skin damage and a lot of pain pushing my legs downward.

 

 

Above: before tendon release. My legs could not be moved sideways or spread unless causing me intense pain. The contractures would even crush my penis and cause it to have pressure sores. That problem's now gone. I can be cleaned easily between the legs also.

 

 

This is me laying as far back as possible in my wheelchair without causing pain in the uncut tendons and the cut muscles at the tops of my legs. My wheelchair would allow me to lay almost flat like a dentist chair. But my legs do not straighten enough to take advantage of that facility. All my physio can be done in my wheelchair at the moment due to the inability to straighten my legs at the hips.

 

 

Thursday 25th, day after Sam takes me home. My lower legs and feet are causing all sorts of trouble and same problems. But still the surgeons do not wish to remove my legs just above the knees (as recommended by a well respected world leading orthopaedic surgeon) to give me freedom from pain and allow for mobility. Before leaving the hospital one doctor actually said it was not important that I roll in bed independently!! But it's ok to be totally reliant on others for everything I need and keep me feeling guilty and trapped, apparently. And though all the doctors know I have no balance they keep saying the removal of my legs would interfere with my balance. Other words, some do not want to know the full extent of my physical limitations or possibilities.

 

Fortunately, there are surgeons wanting to help me. Unfortunately, they are private and are not at present allowed to touch me. I have to go through all this suffering and pain and imprisonment to make sure I don't suffer more pain. Well, that is my decision; could I really be in much more pain physically or emotionally. I'm 40 years of age and one would think I know what I need by now. I've seen my life taken from me due to my legs preventing me accessing mobility and pain restricting most of what I can do. It's better to take risks than spend the next 40 years a prisoner to my legs!!! I want to live but I can't live like this. I refuse to live like this because it is simply not necessary.

 

I see the surgeon again in six weeks time for assessment. I've been given the impression that nothing has been ruled out; it all depends on how well my tendons respond to physio. I respect that. I just so desire to sleep in a bed independently and free of most of my pain; be mobile; play on the floor with my dear dogs; and use a walking frame a bit.



RECOVERING FROM FLU

It's been a little quiet here as Robbie and I have come down with a bout of flu that we have been fighting for some days and I'm only just recovered enough to do some blogging. We are generally isolated but with all the mingling with people recently it looks like we've been picking up some bugs. But mingle we want; mingle we must and mingle we will.

 

This past week has been the worst in the 20 years of caring for Robbie. All I could do was stagger out of bed to take care of the bare necessities like feed us and clean up colostomy spillages. Robbie could not be placed in care, not even in the hospital as no one can cope with his needs adequately or appropriately even when he's not sick. And it seems every time he's in hospital for more than a few days he comes home with something new. Being so near to his second round of surgery for tendon, muscle and ligament release on the 16th of July the risk of him contracting something nasty at the hospital on top of his flu was too risky. Nor did he or I wish for anyone else to catch it!!

 

Nor could anyone come around to help as I was in no condition to train anyone. And no one's going to come around at 2.30am to clean up a leaking colostomy (of which two decided to burst this week!!!). The other at some other horrible hour of the morning also. Dramas do not happen during working hours. And paid carers who can stomach colostomy clean ups are far and few anyway. And in most cases they are not legally allowed to deal with such things. That is generally allocated to a stoma nurse or someone with similar training. And his urodome deciding to fall off at the same time as the 2.30am leaking colostomy which just added more to the excitement and the knowledge that a carer like myself caring for someone so severely handicapped as Robbie is all alone at the end of the day.

 

 

This is Robbie's first bout of flu since knowing him. It's my first in over 20 years. He only had three colds during all the years living in the heat of the Northern Territory. But in ten months of moving to a cold climate he's had two colds and this flu. Not that we regret our life saving move for one moment we're just not used to being struck with viruses.

 

Last week it was rather soggy in Sydney what with all the rain. But that did not deter Robbie and I from shopping and then attending a games night. Here's Robbie above - with moose hat - after the games night having spent some time wrapping him and his wheelchair in plastic for our journey home. As soon as I'd finished the wrapping it stopped raining. But kept the wrapping on as better safe than sorry. It started raining again as soon as we arrived home. Two days after this he and I are sick as dogs.

 

I was suppose to sew a special rain coat for his wheelchair this week but the flu delayed that. Had a lot of important stuff on this week that's had to be postponed. Such is life!!

 

And for those wondering. Robbie's percutaneous surgery in June for his hip twist has his back and butt in great condition. See below.

 

 

Before percutaneous tendon release.

 

 

 

After the release.

 



FLAMED MARSHMALLOWS

(22/06/2013)

As I've missed out roasting marshmallows over a camp fire I had an idea last night to melt them over a candle's flame on my tray while sitting in our chilly sun room. (1:44min)

 A flaming marshmallow

Video with the lights off (1:40min)

 

A picture says a thousand words.

 

PIZZA AT MIDNIGHT

 

As Sam and I live close to a 24/7 out door pizza place we decided yesterday to order a Supreme around about midnight taking our two dogs with us. It was a great evening. Dogs behaved themselves and despite it having poured down with rain a couple hours earlier - threatening our night snack plans - the clouds dispersed and the stars reappeared. All we need and want is so close to where we now live. And since we sleep at any hour of the night or day it's great to be able to drive my electric wheelchair and dine out at night at any time we choose.

 



 

MORE SURGERIES. YES!!!!

 

After the success of the percutaneous tendon release on the 4th of June that has rid me of my lower right back pressure area and resulting sores I will be allowed further tendon, muscle and possible ligament release of the hips at the tops of my legs. I can't wait. I am in so much pain and Sam still can not access me properly for cleaning.

 

With the success of the first surgery that has rid me of the pressure area, straightened greatly the twist in my lower back and relieved my penis of being crushed I am positive the next surgery will also be a huge success and allow me to straighten the tops of my legs to a large degree. And I've only four weeks to wait!! I just want all this out of the way ASAP so I can have a life and forget about my life and that of Sam's revolving around my legs and what they prevent me/him doing.

PERCUTANEOUS TENDON RELEASE

 

Before and after my partial percutaneous tendon release surgery on the 4th of June, 2013. Twist in my hip is greatly reduced and the pressure area has mostly cleared up.

 

 

 

Six days after surgery

 

I've an appointment with the orthopaedic surgeon on the 19th of June for a follow up and consideration of further surgery to release other tendons and/or ligaments that cause my knees to come to my chest when I lay down. These tendons also prevent me straightening the tops of my legs which make it impossible for anyone to me clean me easily or properly.



 

CROCHET PRESSURE CUSHION

(31-05-2013)

 

 

 

During the age of 9-11 I lived in England with my beautiful grandparents on my mother's side while a serious domestic situation was happening between my parents in Australia. Best two years of my life apart from the time travelling Australia from 1972-74 when my parents and me - their only child  - first arrived in Australia. But anyway, I had a cousin who knitted fantastic cardigans to sell. She also crocheted. My Nannie showed me how to knit and then Maureen showed me how to crochet. So some many years later at the age of 44 the skills have come in handy.

 

Recently I've noticed the polestyrene beads used to fill bean bags and which I use to fill Robbie's cushions with are collapsing within a few weeks instead of many weeks. Special pressure cushions out of foam have a limited life due to Robbie spending 24/7 in his wheelchair and have not sat him comfortably since 2009. Other systems also failed, thus resorting to the very successful bean bag filler. But now that the quality of the bean has gone - I explored my brain cells and dragged out a large crochet needle I'd used some years ago to make some twine netting for a piece of my art work.

 

And with a worsening twist in his hips that we hope to have improve with a partial tendon release on the 4th of June he needs a cushion that will help keep the constant pressure area stable.

 

About 42 balls of yarn later I've managed to come up with a crochet pressure cushion comprising of 12 layers of large double crochet stitch to allow for the material to breath. Designed to fluff up like a pillow and repositon. Also can add, subtract or rearrange the layers. Put the layers together with more yarn so no slipping ocurrs and then wrapped it in a cloth towel. Today's the first day of its use and so far Robbie says it is the most comfortable cushion he's had in years. So time will tell how successful the material.

 

Now to measure for a back cushion as the foam one bought only a few weeks ago is already collapsing under the nighly pressure.

 

But first he wants me to make him some special pink mittins and a colorful hat. It's Autumn.



 

iPad art app

 

Couple of days ago I opened an app game where the user draws something and others have to guess what it its. Here below is my first effort.

 

 

About to get a jab.

 

Presently I'm looking through some of the thousands of art apps out there to find one that will suit my limited fine motor abilities. Fortunately many of them only cost a dollar or so. Sam said to down load a few after the try before buy. Then I told him I've only 40 cents left in my account. Drat!! He only topped it up a couple weeks ago.



FINGER FOOD
(26-05-2013)

Attempting to eat with my fingers/hands a cut up summer roll. Lots of effort...

BUT...

There's an easier way.

BLACK BOARD TRY-OUT

(26-05-2013)

Trying out a black board and chalks

First drawing with chalk. Man with bow tie.

Video of trying to write the lower case 'a' and lots of rubbing out with a cotton sock.

Note that I have a bad cold during this. Now I'm off to sleep though early in the day (3.30 pm) and will miss my karaoke night for a second week in a row.

Will put aside the black board till I'm more efficient with writing on paper or a white board due to the fragility of the chalk.

WRITING SURPRISE!
(I'll update this page regularly, so anyone interested in Robbie's writing and drawing progress, please visit this page again)

Robbie's full of surprises. When I first encouraged him to draw nearly 20 years ago he said he couldn't so I just left him to his key board. And he didn't want to draw as he didn't want his drawings looking like a three year old's and making him feel less confident than he already was. He also had a terrible time battling with his left hand trying to stop what his right was doing and needed the left hand to grasp the edge of his tray which was very tiring and a barrier to activities such as eating easily so drawing was not going to be relaxing. So I left him alone. But these past few months I've suggested he try to write with a pen due to his "X" signature improving. Told him it would be handy and might help his fine motor skills and perhaps give him a feeling of accomplishment. But he didn't give it a go till today.

So I drag out the paper and a marker pen all geared up to do the "trace the A" thing and basics. Robbie didn't want to trace as he said he knew what letters looked like. So left him to do freehand. After doing four A's he was pleased with his attempt. Having got that out of his system I encouraged him to trace over the A's I'd pencilled before hand. He did a brilliant tracing job as seen in the video above. The last A became a bit crooked as he was no longer central.

He wanted to trace some more A's so I drew three more.

Having done an excellent job tracing the extra three A's and at a rapid pace he decided to do some more freehand A's.

After the freehand neatness his confidence blossomed and he said he was going to write his name. I couldn't believe it. I'm pleased I videoed all this. The only writing tried while with me came to nothing or he scribed with great difficulty the X signature he's required by law to do sometimes on forms. He said he could write his name at the age of six but it was decided by the school teachers at his special school that he'd be better off with a key board as he was too slow (and they were obviously too impatient). He thinks he was about thirteen the last time he wrote his name by hand. So the above video  captures the first time in 27 years that he's written his name.

Yes, we're going to frame this and hang it up. I was so impressed with the B's!

Robbie was so accurate with his tracing.

Pictures taken from the videos. Note that Robbie only did this writing exercise for about half an hour. So he started with the four freehand A's then traced my pencilled A's below them.  

He then wanted to trace more A's. After the tracing he again did five free hand A's. I am astounded at the difference between the first freehand A's and the second attempt within half an hour. There's obviously a good activation of the right side of Robbie's brain. Now he's keen to do some drawing. I can't wait!! I'm so proud of him. I'll have to introduce him to, "Drawing on the right side of the brain" by Betty Edwards. AND his left hand behaved and was relaxed!!!

14/05/2013

WRITING 'B'

As with the A's, Robbie first freehands the B's.

Followed by tracing over pencilled B's.

Finally, doing freehand B's. Again the improvement within 15 minutes is remarkable.

After doing the B's he now draws his first Bee. He didn't want to look at photos of bees first. Nor does he for is next attempt. He so far is only wanting to draw what is in his head and not be influenced by pictures.

First freehand of B's as shown in videos.

Traced B's

Then the second attempt at freehand B's after tracing.

Robbie's first Bee drawing.

Saturday, May 18th, 2013 

Video 1 (2:24 minutes) Robbie using lined white board sheet. 

Video 2 (2:12 minutes) Attempting the alphabet on blank white board sheet.

Video 3 (50 seconds) Writing his name. It wasn't till a couple hours later that we both realized why he was having such a problem with this session of writing. He'd never written on a white board before so he was slipping all over the place. On top of that he was getting a bit nervous about me standing too long with my bad back while filming. Thus he also ended up with a severe attack of nervous giggles. So I put the camera away and left him to do what he wanted.

So, although still scribbling on the slippery surface, but free of the giggles, ended up with the smiley bee above.

Picture from video 1

Picture from video 2

Picture from video 3

Using paper as a medium is preferable to the white board surface but Robbie enjoyed being able to erase anything he didn't like by himself and he hates wasting paper. But he also realizes that getting familiar with different materials while writing and drawing will make him more versatile and give him more options and open doors to his creativity.

 

 

Over the past couple of days Robbie has been determined to conquer writing 'a's. So this moring he with great enthusiasm took marker to paper. Not having much success he tried to trace over some 'a's I'd pencilled. He just could not do it. Probably because it was rather cold this morning making his hands stiff. And also getting over the tail end of a bad cold didn't help his concentration. So I suggested he not worry about the 'a's and just see how he'd go writing his name a few times to warm up.

 

Warmed up the 'Robbies' looked rather good and similar.