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2015 Trivia Night

  • Posted on August 9, 2015 at 11:37 am

Our annual Trivia Night fundraiser is on again – 6.30pm for 7.00pm start on Saturday 5th September . It’s always a fun night and we’re expecting this year to be no different.

Maddie has now reached the point where she’ll be getting out and about more in the world, she’s also spent a lot of her life sitting and this is catching up with her.  Given the health benefits of standing as well as the increased independence we really need to raise the funds for a standing electric wheelchair.  Just by coming along to the Trivia Night you’ll be helping her achieve this goal.

All the details can be found in the flyers.  Love to see you there.

Trivia Night 2014

  • Posted on January 3, 2015 at 3:14 am

The Maddies Mates 2014 Trivia Night has been run and won!  Congratulations to:

1st Place
Man In Black

2nd Place
Ebony & Ivory (missing a few)

3rd Place
Glam Rock

 

 

 

 

 

 

 

 

 

 

The theme for the night was Music and as you can see from the pic’s plenty of people got into the swing.  We want to say a special thankyou to all those people and businesses that helped with prizes, donations and organising. We also want to thank everyone for coming along and supporting Maddie, we are truly grateful for all your generosity.

The money raised this year is going to help with the equipment Maddie is going to need now (wheelchairs as a start).  Now that she’s getting bigger the time is fast approaching where we’re going to need to make modifications to the seating in our van and we already know this is going to be many thousands with only a couple coming from a government program.

We hope that everyone had a great time, see you again in 2015.

Ready To Go

Raine and Horne’s Elvis presenting Maddie with a surprise.

Liza, Taylor, Willie & Cindy all in one place!

 

 

 

 

 

 

 

 

 

“The Producer”

 

Heads n Tails

Cindy, Taylor & “Aunty” Amy

 

 

 

Cindy & Pink

 

WINNERS ARE GRINNERS

Maddie’s Mates Trivia Night

  • Posted on July 20, 2014 at 3:18 am

The annual Maddie’s Mates Trivia Night is on again, 23 August at 6.30pm. Details are in the flyer below.

The theme for the night is music so come in your best dressed music themed outfit.  If you’re name isn’t Glenn A. Baker and you’re not a music guru that’s ok as the questions will cover all sorts of topics and not just music.

For the die-hard rugby fans we will open the doors at 5.30 and have a TV at the back of the hall so you don’t miss out on the Wallabies beating the All Blacks at Eden Park for the first time since 1986!

 

Teenage Adventure Camp

  • Posted on July 13, 2014 at 5:58 am

 

During the school holidays at the end of term 2 Maddie was fortunate enough to be able to go on a teenagers camp for a week. Teenage Adventure Camps QLD is a charity run by volunteers and provides teenagers a range of opportunities and experiences to challenge themselves. Maddie got to ride over the Gold Coast in a helicopter, had dinner and a show at Jupiters Casino where she got to go backstage and meet the stars, played indoor soccer, went crabbing/fishing, took a ride in a Ford AC Cobra as well as having a few late nights and making lots of new friends and catching up with .  As you’d expect she came back exhausted but with lots of stories, she really had a very full week.

A big thankyou goes out to all the volunteer carers who looked after Maddie so well and all the extremely generous people that make this week possible. Whilst  Maddie had some physical challenges during the week she was looked after very well would not have had the opportunity to do all this without them.  Thanks to all involved.

 

 

 

 

 

Hydrotherapy

  • Posted on May 26, 2014 at 11:17 am

As has been the case for the last 15 years since being diagnosed with Cerebral Palsy Maddie has been constantly having physiotherapy, there have been others like speech and occupational therapies, but this has been the one she has needed the most.  She has complemented physio with Hydrotherapy on and off as we could manage it for a number of years now.  We’ve now found a really good therapist by the name of Michael from Gateway Physiotherapy and she’s been going regularly once a week now during the warm months.

Just being in a pool helps but combining this with the warmth of the water at upwards of 300C there are so many more benefits.  It helps to reduce the tone in her muscles, helps with balance and posture, muscle strength, breathing control and weight bearing to improve bone density.  She works really hard during these sessions but at the same time she has a good time.

You know what they say about pictures so here’s a few thousand words…

Stepping with Michael

Kick those legs!

 

 

 

 

 

 

 

 

 

Balancing with Alex

 

 

 

 

 

 

 

Rolling on the mat

 

 

 

 

 

 

 

Bunnings Sausage Sizzle

  • Posted on May 26, 2014 at 9:53 am

The sausage sizzle has been done and dusted.  We couldn’t have asked for better weather (well we are in Queensland after all…so another perfect day) and Bunnings was buzzing with people.   Just like 2012 we sold a lot of sausages, we even had to go and buy more after selling the whole  70kg of snags and 45 loaves of bread.  And quite a number of people made extra donations after they bought a sausage, there was even one very generous man there with his kids who put $100 in the tin!!  Peoples generosity never ceases to amaze us.

 

 

We also held a raffle to give away some Bunnings vouchers that Maddies Grandparents donated and 1st prize went to Simon who lent us the worlds biggest esky. All the money raised on the day will be going towards Maddies Second Skin postural suit to help with her scoliosis.

A big thankyou to all who helped out on the day.  We couldn’t do it without your very generous support.  We could also not have raised the money without Bunnings, their customers and their staff.  There was actually one young Bunnings team member who took time out of his break to go an put an announcement over the PA system at 3pm to tell everyone we still had sausages cooking.  If you’re at Bunnings buy a sausage, it will surely be going to a good cause.

Botox Treatment

  • Posted on May 25, 2014 at 6:58 am

Most people associate Botox treatment with celebrities and wrinkles but, even though she’s gorgeous and wrinkles are the last thing on her mind, Maddie has now had two Botox treatments in the last 12 months.

The benefits can be extraordinary in people with Cerebral Palsy.  It helps to relax the muscles and with the right dose can allow movement that has either not been possible before or make it easier.  In 2013 Maddie had her first botox treatment in both her upper and lower limbs and a couple of weeks after the effects we dramatic.  Whilst she did experience a little weakness in her legs as she now had to use the muscles to stand instead of relying on them being rigid anyway her arms and hands showed the greatest improvement.  She overcame the weakness in her legs after 2-3 weeks and her progress at gym and physio also improved.

We were at the shops one day and Maddie had a drink bottle that she would normally struggle to pickup but before she even realised she was doing it she had picked it up and started to drink herself.  It wasn’t until she had done it that she realised what she had just done and the smile was priceless.

She even progressed to picking up cups without handles in one hand!!

CHEERS!

On the walking side it was hard work learning to use muscles she either never used or had to retrain to be used properly.  It was difficult but she kept at it.

In 2014 Maddie had her 2nd botox treatment only this time, based on the positive effects from 2013, it was in her upper body (chest, biceps and wrist muscles). The intent was to get more of an effect right down to her fingers as last time it did seem to flow down her arms.  This time we didn’t notice as much of an effect which is normal so she had casts done to stretch out her wrists and fingers and basically stretch the muscles, one arm at a time so she still had one to use.  They weren’t the most comfortable things for her to wear as she is used to having both her wrists and fingers bent most of the time (and showers were fun with an arm in a bag).  After a week the casts came off and a splint was made while she was relaxed which she is to wear alternate nights in bed.

Casting after Botox

There is only so much of this toxin that can be administered within a certain period and it does lose it’s effect over time so we have to get the most out of it now.  Click here for some information on botox treatment in children with CP.

We are expecting Maddies next treatment to be in her legs so we can put the emphasis on mobility this time.

Trivia Night 2013

  • Posted on October 20, 2013 at 10:54 am

Our 2nd Trivia night held in July was a roaring success!  There was a Hollywood theme to the night and there was plenty of imagination on show. We had super hero’s, Bob the Builder’s, the cast from the “Great Madsby” (sequel to the Gattsby perhaps?), plenty of cowboys, pirates, Gangsters, Ghost Busters, Ticket Collectors, Marylin Monroe made an appearance, M*A*S*H 4077, and even a singing Elvis….and boy could he sing!  With just over 150 people coming along we were very grateful for Lourdes Hill College allowing us to use the large hall/gym so we had plenty of room.  During the…

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.