My 'Loves' lately....

Today we had a great day, Luke, Ellie and I went down to Healesville to pick up some wine donations for the first fundraiser for 4P Aussie Kidz. It was a beautiful day, with great weather and it got me thinking about what I love at the moment.

• I LOVE that summer is on its way. (I know Spring is next, but that doesn't matter. There is more sunshine on the way
• I LOVE that Ellie is loving being outdoors in this nice weather... and we have spent allot of time with our dog coco in the park. Ellie loves it
• I LOVE how inquisitive Ellie is.
• I LOVE how Happy and Funny Ellie is at the moment. She cracks us up...!!!
• I LOVE the Ellie is a daddy's girl. The smile on her face when he comes home is priceless.
• I LOVE the generosity of complete strangers. After our story on Ellie, Wolf Hirschhorn Syndrome and 4p Aussie Kidz went to air on Channel 7, we were contacted by 2 lovely ladies, Joanne and Hanna from Got it in the Bag (www.gotitinthebag.com). They do promotional show bags filled with flyer's, vouchers, special offers etc, and they get handed out at markets, expos, shows etc. They offered to put the flyer for our fundraiser in 250 bags they had going out this weekend, and any other weekends we wanted leading up to our event on the 22 October.. WOW..!!! This is massive, this meant that 250+ more people were going to be aware of WHS and also 4P Aussie Kidz. They did this at no charge to us. For that I am thankful...!!
• Another act of generosity was today, when we were down at Healesville picking up wine, we popped into a Brewery, to see if they could assist with a small donation. We walked away with 2 boxes of boutique beer and 1 box of cider. Plus... he said if we needed more closer to the date of our fundraiser just call and he will arrange more.

Life is good....!!!!

Papparazi.... Snapparazzi!!

Fun in the park

Cheeky Girl

My Little Ballerina

Happy 3rd Birthday my princess

Dear Ellie,

Happy 3rd Birthday my beautiful princess.

3 years... Where has that time gone? Our life has changed drastically since you came along.

When becoming parents we didn't expect that we would have a child with special needs.

Nor did we think our life would revolve around therapy and doctors appointments.

We never expected that you would have to work so hard to achieve all the usual milestones.

Nor did we think there would be milestones you would not meet.

Ellie, yes there has been a part of the last 3 years that has been hard, there have been tears, and their has been worry.

But you bring so much joy, happiness, and laughter to our house, that you help erase the hard times. You have taught me so much about myself that I never knew.

You have made me a stronger person.

You have made me a courageous person.

You have made me speak up, where I normally wouldnt.

You have made me appreciate more in life, the small things in life.

You have made me a proud mother....

And for all this I Thank You.

Happy Birthday, my Beautiful Princess

Love Mum x

4P Aussie Kidz in the NEWS...!!!

This week, Tuesday there was a story about 4P Aussie Kidz on the Channel 7 news.

This all came about after our appointment with Ellies neurologist last Friday, and I was telling him about 4P Aussie Kidz and he thought it might be a story that Monash Hospital may be interested in.

Two days latter, Monash rang to say that channel 7 were interested in the story and wanted to record it the next morning to go to air that night.

Wow... We were blown away, as well as nervous. For those that know me well.. know that I am not shy, but public speaking is one of my least favourite things... I HATE it.... So this took alot of guts for me to do.

The reporter and camerman from Channel 7 were lovely, and you could tell they were genuinely interested in our family and our story. I was really happy with the way the story went, It came across as a positive story about Ellie, Wolf Hirschhorn and our life, and also the charity we have started, 4P Aussie Kidz (Inc)

If you want to see the video, click on the link below:

http://au.news.yahoo.com/video/vic/-/watch/26291411/brave-little-girl-inspires-positive-website/

The response we have recieved since this went to air has been really positive. We just want to make people more aware of this rare condtion.

Remember if you want to purchase tickets to 4P Aussie Kidz first fundraiser, go to our website

www.4paussiekidz.org.au or click on the link below: (and go to page 2 of the PDF)

www.4paussiekidz.org.au/events.html

Papparazi.... Snapparazzi!!

4P Aussie Kidz website LIVE & Tickets available to our FIRST annual fundraiser

As you all know, we have started a not for profit group called 4P Aussie Kidz (Inc)

4P Aussie Kidz has been established to provide support and financial assistance to families who have children Wolf Hirschhorn Syndrome (WHS)

Our website is now live at: www.4paussiekidz.org.au

Another exciting announcement is that tickets are now available to our first annual fundraiser, which will be held on the 22 October, 2011 at The Mentone RSL.

To purchase tickets and for further details about this event, please go to our events page on our website...

www.4paussiekidz.org.au/events.html

Been a while..

Its been a while since my last post.

We have just been caught up in that whirlwind called 'LIFE'. All is ok, just busy.

Ellie started back at CPEC this week and she found it hard going back, hopefully it wont take too long for her to settle back into the program.

Today when I put her to bed in the afternoon, she was pretty upset.. when I went in to check her she was 'sitting' up in bed. This was a first!!!! This meant that we had to drop the cot, so her matress was lower. I didnt want to even see if she could try to get out.

Ellie has also been having some funny moments lately. By funny moments I mean, I think it is some sort of small seizure activity. She has these moments where her eyes roll back, then close and she does funny things with her mouth. They are happening more frequently and when they do happen, it happens about 3 - 5 times. Just going to keep an eye on this and call her neurologist if it continues.

Today Ellie was at Bayside SDS. I love it when I pick Ellie up from here. She is smiling, laughing... its like she is telling me she has had a fun day.

Here are some new pics... Enjoy!!