Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Wednesday, October 27, 2010

FIrst donation for 4P AUSSIE KIDZ

This is a bit of a delayed post, so sorry about that. At this start of the month, we were invited to a job where Luke had been working for about 1 year at Manningham Council.

Once a month Manningham Council have a happy hour on a Friday afternoon, where drinks and nibbles are provided, and every one makes a gold coin donation and money raised goes towards a charity of their choice.

For the October happy hour, their charity of choice was 4P AUSSIE KIDZ

We were so happy that they chose our group to make a donation too. Luke, Ellie and I went along to the happy hour. I had the opportunity to speak about Wolf Hirschhorn syndrome and how it effects our kiddies, I also spoke about about where we are at in the process of setting up 4P AUSSIE KIDZ, how we aim to raise money and also what this money will go towards.

There was such a positive reaction to what we are doing!! It was a great afternoon

We are yet to receive the final donation figure, and are very thankful to Manningham Council for their time and donations.

Tuesday, October 19, 2010


Sometimes I find it hard to recognise myself as a carer... Im just doing what any other mother or father would do if they also had a child with a disability.... Im just looking after Ellie because I love her, because Luke and I want the best for Ellie.

This week is Carers week. Careres weeks is time to celebrate the 2.6 million unpaid family carers tho make a cital contribution to Australian society. Across Australia carers are providing unpaid care and support for a family member or friend with a disability, mental illness or disorder, chronic condition, terminal illness or who is frail.

Caring for Ellie is a full time role, and yes somedays I miss the normality of 'life', but one thing Ive learnt from looking after Ellie is that I am alot stronger than I ever thought I was.

Happy Carers day to all the carers out there!!

Sunday, October 17, 2010

Pics... Enjoy!!

Ellie trying to munch on her shoes
Fun on the swing!
Fun time with Dad!

Friday, October 15, 2010

Just some updates

Been a quiet week or so. At the start of the week we went to Ellies private physio session, and we discussed starting hydrotherapy with Ellie. So the plan is to wait for the weather to be consistently warmer and then we will start. I am really looking forward to this as it is just another way of helping Ellie, but hopefully she finds it fun. I know I will!!

At the start of the week Ellie also had a couple of small seizures, they were not big ones. But the second one really had an effect on her. For about 2 hours before she had the second seizure she was upset, agitated, clingy etc. It thought she may be teething so I gave her panadol, but this didnt help. However after Ellie had lunch, whilst still in the high chair she had a seizure, not massive, but it did go for at least 5 minutes on and off... I really think this was why she was not herself that morning.. Poor thing!!

After speaking to her neuro we have put up one of her medications as her weight has increased slightly, She has had a few small funny moments since this increase, so fingers and toes crossed this controls them.

An update on 4P AUSSIE KIDZ: we are hoping to have our draft logos presented to us next week. So hopefully I will be able to share the final draft soon. We are also in the process of putting together what we want on the website

Tuesday, October 5, 2010

Ellie is on the move!!!

I would love to say in this post that Ellie is crawling... that is not the case.

BUT.... She is finding a way to get around. Ellie has been able to roll for some time, but all of a sudden, all she does is roll. I am constantly finding her in places she shouldnt be. Cheeky Girl!!!

She just rolls and rolls and rolls, plus when she rolls onto her tummy she is holding herself up on her arms for alot longer, and holding her head up higher.. Its like a workout for her every day!!

I am hoping to get a video of her in action to post, as I find it extremelly funny!!

P.s - considering I thought that Ellie would never lie on her tummy and be able to push up on her arms.... I am wrapt with her movement!!