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NDIS Queensland Announcement

  • Posted on May 22, 2013 at 4:40 am

On 8 May Prime Minister Julie Gillard and Premier Campbell Newman signed off on the NDIS for QLD…and I was there to see it for myself!  The Cerebral Palsy League invited us to be there for this historic moment, a moment when people with a disability finally had some certainty about their care and support in the future.

Whilst it is still going to take a number of years to be fully implemented at least I know that I’ll be able to make my own choices;  I’ll be able to choose the type of support I need, who provides them (from a list of approved providers) and how funding is managed.

When I was born early intervention was being talked about, mum and dad knew it was critical and so got started on therapy that has helped me get to where I am today.  Thankfully the NDIS is going to include early intervention because they now know acting early can improve a person’s development, recovery and well-being whether they be a child born with a disability or someone who has acquired it later on.

While we may have to be a little patient until it all gets going there is light at the end of the tunnel.  As you can see from the photos the day was a very happy one.

Jenny Macklin (Minister for Disability Reform), Mum and I

Tracy Davis (QLD Minister), Angela Tillmans (Cerebral Palsy League CEO), Mum, Dad and I

 

 

Some More Surgery and a Few Setbacks

  • Posted on May 19, 2013 at 6:09 am

In 2011 I had some major surgery to straighten my legs and lengthen some muscles to help me walk and the last step in this process is to have the plates removed, this happened in January 2013.  However, back in about August/September 2012 we noticed that the curve in my back had become a little worse, but it wasn’t anything major so I had a back x-ray late in 2012 just to keep a check on it.  More on that later…

Whilst having the plates out wasn’t as major as having them put in it still wasn’t a pleasant experience and meant I wasn’t allowed to stand or sit for a couple of weeks.  At the same time I had some Botox in my knees and hamstrings to help the recovery and the muscles to relax (no it has nothing to do with making them look prettier 🙂 ).  As the bones become weaker due to the plates taking the weight and the holes that the screws leave I had to be careful not to break a bone until they got hard again which took about 6 weeks.

Once again it was back into the recovery and strengthening work, but I was having trouble with my boots hurting my feet and a muscle in my thigh that didn’t want to relax so I wasn’t able to get as much work done as I needed to.  To make matters a little worse I wasn’t sleeping very well which meant I just didn’t have the energy to exercise.  It was in a follow-up visit to the CP Health Clinic at the Children’s hospital that we saw the results of my first back x-ray and these showed a significant change in my spine.  I was told that what was once minor Scoliosis had become much more serious.  It was enough to cause some concern about the effect on my internal organs due to the amount of curve in my spine; so then it was appointments to be made with a cardiologist to check on my heart and a respiratory specialist to assess my lungs and breathing.  I got the all clear on my heart in May, it’s located where it is supposed to and thankfully still beating 🙂 .  I’ve also had a couple of lung function tests which weren’t as successful (and probably explains my lack of sleep) so we’ll need to keep an eye on this for a while longer yet.

All this meant I wasn’t up on my feet as often or for as long as I needed to be.  After we’d flown up north for a wedding I was diagnosed with Deep Vein Thrombosis (DVT) and a Femoral Hernia.  This meant another week in hospital and blood thinning medication which I’ll be on for 3-6 months.  I’ll probably have to have the hernia fixed once the blood clot has disappeared because this is apparently what caused the blood clot.

The DVT has highlighted just how important it is for me to get on my feet as much as I can and, whilst my walking is improving, I really need to stand for longer periods and move so I pump the blood around my legs.  Therefore this year our goal is to raise enough money to buy a standing frame like the one in the picture….unfortunately they’re worth $9000…and also to help pay for the physio sessions.

 

After the visit to the spinal clinic the specialist said I didn’t have to have surgery to correct my spine….yet…but I have to get stronger to control it.  As I’m sure you could imagine this was the best news I could have got (if you’re game do a search on “Scoliosis Surgery” and you’ll know why I was so happy).   If I was to have the surgery it will stop me from rolling over and make standing/walking much more difficult so there was no way I wanted that to happen.  So once this clot is sorted we’re off to the gym to pump some iron!

My goal is still to walk and I’m now well on the way.  These few setbacks may have slowed my progress but I’m still determined to make it all worthwhile.

Agoonaree 2012

  • Posted on May 19, 2013 at 4:23 am

 

  Agoonoree is a scouting term to describe a camp for young people with special needs.  Each year Scouts Queensland and Guides Queensland invite about 70 children as ‘guests’ to participate in a week long camp at Baden-Powell Park, Samford.  We get to spend 5 days in a scout troop doing all sorts of activities like abseiling, campcraft, movie night, disco, crafts, sports and much more.

 

This is my 2nd year and again I had a great time.  We didn’t have a flying fox this year but I did do some abseiling and rock climbing. If it wasn’t for lots of really generous and caring people who look after us and come up with ways for people with disabilities to participate in activities like these I’d never know what it feels like to abseil or fly through the air.  Thankyou to everyone involved.

Food Spectrum Masquerade Ball

  • Posted on May 19, 2013 at 3:51 am

Food Spectrum Charities held a masquerade ball in 2012 to raise money for children with disabilities.  I was very lucky to be one of those who they supported through the Cerebral Palsy League and they helped me out with money for an adjustable bed.  Now that I have a comfy mattress to go with it I’m getting a much better sleep at night and it is a lot easier to get in an out.

I was also lucky enough to be invited to attend the ball.  A big thankyou to Mark and Lauren Betts and everyone who contributed, their generosity not only helped me but many other kids as well.  During the night I got to meet some famous people and make new friends.

The Hogster and I

 

 

 

 

 

 

 

 

 

With Simon “Blacky” Black
Brisbane Lions AFL Team

 

With Jamie “Charmo” Charman
Brisbane Lions AFL Team