Sponsor Me in Cupid's Undie Run

Sponsor Me in Cupid's Undie Run
I'm raising money to fight a nasty genetic disorder with 1.5km' ish run in my underwear on Valentine’s Day

Thursday, 29 January 2015

Preparing your child for an MRI scan



Children under 5 mostly have their MRI's under general anaesthetic . After 5 years old they like to see if they can lie still without the need for sedation / GA.

At 21 months Joel had an MRI (head) with GA – he had no problems at all - fasting was his biggest issue because he did not understand why I refused to let him breastfeed or food. There was never a question of having it without sedation. He had already being forcibly strapped down for a few renal scans DMSA as a toddler and that was most traumatic for both of us. Me - I cried bucketfuls handing over my unconscious baby and walking out the door.

Sam had his first MRI brain at 5 1/2, the Children’s hospital staff encouraged us to visit for a mock MRI a week or so prior to the actual diagnostic procedure ; in case GA was needed. He needed an MRI to check his optic nerve pathways and brain because of his Neurofibromatosis (NF1) diagnosis*.


Having had an MRI myself , I wasn’t sure if Sam would make it through awake and STILL. As a boy he was rarely still.

The educational play therapist (I think) read Sam (& Joel) a story while they were engaged in playing with a miniature you version of an MRI machine and a tiny patient doll.



Then she explained the tunnel-like MRI machine (behind a curtain when you enter the room) It was a real life size machine without functioning magnets or scanning ability.


 Sam was allowed to explore the machine and then lie on the movable scanning bed.



The therapist played a pre recorded version of the NOISY, steady pumping sounds - loud whirring, clicking and even banging of the magnets –while Sam had a go at lying still , like a statue. 


In the real MRI – the loud noises pound as the magnets work to produce the images for 30-40 mins or longer. They had headphones and allow the children to watch a video through a mirror above them.

They told Sam everything he needed to know and more (the hurty bit with a cannula) complete with a practice drill of the entire MRI process. Though it lasted for only for about 10-15 mins.


How much did he understand ?

Sam was a trooper and he nailed it. It took about 30 - 40 mins from memory for the complete diagnostic scan.

Fast forward 3 yrs and Sam required a follow-up MRI - yesterday. We had it done locally and they will send the CD images to Westmead Children's for reporting.



I think he remembered most of the process from his first MRI adventure. As we had been holidaying and paddling the last 6 days I didn’t have time or even think about preparing him again.

On the way in the car I made the mistake of saying they used a contrast dye for the images – he heard DIE – “what DIE ?” he said worriedly ? I rephrased it. Oops.

In hindsight , I should have hit The Google machine , tonight after a reader asked a question I found dozens of you tube videos.



*NF causes mostly benign tumours to grow on nerves. NF is a lifelong medical condition and can affect many organs in the body, including the skin, eyes, bones, and nervous system. 

 Sure, Cupid's Undie Run - Australia is all about running with your pants off for a laugh. But it's also about supporting a great cause!

We run and fundraise because we believe there is a solution to end NF out there somewhere. Through the research guided by the Children's Tumour Foundation, funded in part by Cupid's Undie Run's fundraising, we will find this final piece of the NF puzzle. We will find a cure.

  Sam was so brave while I felt like crying. We won't get results until 4 weeks when he head to the Westmead Children's NF Neurogenetics clinic appointment.

Please consider a donation no matter how small - everything counts.

https://cupidsundierun2015-sydney.everydayhero.com/au/trish


  

Tuesday, 27 January 2015

Wordless Wednesday : Go the Dragons

Cheer Squad for Men heading to start line Manning River .

Men's 10s with only 8 paddlers not 10. Drummer and Sweep don't count.


Remembrance Paddle Celebration of Life for the Cancer Survivors amongst all the teams competing - joining together for a special moment (not my photo)



Our women's team won Silver : 2nd in Finals ! Watch the Race here !

After Regatta finished Outback Water Dragons headed to Old Bar beach to celebrate - no bikini's required !


Wednesday, 21 January 2015

Wordless Wednesday : World's Biggest Water Slide



Big Splash Water World: the travelling inflatable water park!  55ft high 180ft long !





 

Tuesday, 13 January 2015

Wordless Wednesday : Do not disturb ...

 Youngest brother is tangled with Big brother too - just like old times. BB was visiting !


An InLinkz Link-up


Please sponsor me - every $5 -$10 will help me reach my $1000 target

How much fun it is to run in your undies through Sydney and not get arrested !
 

Saturday, 10 January 2015

How to not get arrested when you run through the city in your undies !


So what's with the undies - Cupid's Undie Run
On Valentine’s Day February 14th  I will be stripping down to my undies and running 1.5kms in the third annual Cupid’s Undie Run! I am participating in this fun event to fundraise for the Children’s Tumour Foundation (CTF).

The Children’s Tumour Foundation provides support and assistance for kids, adults and their families affected by Neurofibromatosis (NF) a group of genetic disorders that affect more than 2 million people worldwide; this makes NF more prevalent than Cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

The aim of the Cupid’s Undie Run is to raise awareness about NF and important funds for CTF. 100% of funds raised will go to sustaining vital support services for NF sufferers, and to promote world-class research to work towards developments in treatment and finding a cure for NF.

I have written a few times about my experience with NF . The 7cm sarcoma in my left thigh had malignant transformation. I had surgery in February 2014 and the pathology came back unexpectedly as a Malignant peripheral nerve sheath tumour. I had six weeks radiation therapy.

NF causes mostly benign tumours to grow on nerves. NF is a lifelong medical condition and can affect many organs in the body, including the skin, eyes, bones, and nervous system. Some people have severe disfigurement and chronic pain.

The worst part of having NF is not knowing what my future holds, I have a 3-4cm neurofibroma in my neck very close to my thyroid/trachea and arteries & veins. It's stable.

My biggest fear is has my tumour spread  and whether I'll find more tumours or existing ones will get larger . Of course, I am anxious every day for my little boy, and other family members who are experiencing complications as they get older. Sam's vision is affected by a complication of NF.

Now, seriously - I'm not used to showing off so much skin in public . Participating in my undies or a modest version is a huge deal for me.

I'd love my readers to get behind this cause or even register to run with me and no you won't get to see my behind! Be thankful.

As I prepare to run in my undies, I will not lose sight of why I am really putting myself to this fun and risque challenge. It is for a cause bigger than just m family and I. Being brave enough to bare all is certainly nothing compared to the bravery that those living with the complications of NF have every day. 

Many with facial dis-figuration are subject to hate crimes and stares and even people taking photos of them.
You can keep up with my fundraising progress here:

https://cupidsundierun2015-sydney.everydayhero.com/au/trish
I can't do this alone! I need your support , my goal is to raise $ 1000. This money will enable continued research and support for NF patients and their families  #endNF !

Events are being held world wide - specifically in Sydney, Melbourne and the Gold Coast in Australia. 

All donations are 100% tax deductible.
Thanks so much for your kind consideration.

P.S.  Making a donation is simple. Click the link above and enter $ amount - any donations large or small will be much appreciated.



 

Friday, 9 January 2015

Move

Such is my indecisiveness - I am choosing a new word or two to add each month, thanks to inspiration from my lovely friend Sam @Annoyed Thyroid and the delightfully inspiring Lisa from The Art of Joy.

My word for January is

 ♡ Move 
- my body more - 

and 

Declutter
my desk, home and life. 



De-cluttering will be a moving challenge in itself and I'm on it already.

I'm feeling all my clothes are tighter since I eased off running (due to the sweltering heat) and we had a 2.5 week break from dragon boat paddling.


Today, I was completely moved by spectacular customer service from Workout World - my pre-owned treadmill I purchased in my old Sydney neighbourhood April 2010 . There was no manual , though I could work out enough settings to walk and run on it.



I've searched a few times , tried placing an ad and come up with nothing!

The last week I've been experimenting with run and walk intervals, due to the heat , joint pain and possibly boredom . Boredom .

I decided to search again so I could use the Custom program settings.


More is less - intervals trick the body into working harder , then you get a rest.
I hope they are right.

Credit


Nicked off an ad.
Googled, as you do, and found a few random people selling the same '2009' model - emailed them with no replies. Bugger.

Then I emailed -Workout World and in less than 24hrs - Adam had emailed me an entire 30 page manual, it wasn't the computer/terminal user manual so I emailed him back and asked for MORE information !

More ...arrived in less than a few hours .

I am in treadmill paradise with the 11 page Operating computer manual. My custom settings are installed (and my right hip hurts. I think I overdid it.)

Outstanding customer service when it is an old '2009' treadmill and I wasn't the original owner. Mind you I am lusting over a new model.

I'm less impressed with Hardly Normal's customer service and we have spent a lot of $$$ there recently. I want a foot pod for my Garmin watch.

Bugger.


Anyway - My January Goals -

  1. Put together at least 30 minutes of moderate-intensity physical activity on most, preferably all, days. Accumulate my 30 minutes (or more) throughout the day by combining a few shorter sessions of activity of around 10 to 15 minutes each.
  2. 30 day Challenge with situps, pushups,planks etc for core strength and arms.
  3. De-clutter (we have already half filled a dump-truck !
How are you going ?
Have you got a word for 2015 ?

 

Wednesday, 7 January 2015

Wordless Wednesday : Patio Rules

Almost finished ...except an extension is now planned to better accommodate our new outdoor table & chairs !


Full Moon Rising
Credit ...where can I buy this in Oz ?



Is it  a Verandah or Porch or Deck or Patio ? (This is back and the side is not shown)


 ♥ : 
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