Being happy doesnt mean that everything is perfect.

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

Wednesday, January 26, 2011

WOW!!! There some interesting stats

I found something on the blog today that I didnt know existed... there is a stats link. One of the things that this shows is where the readers of Ellies blog come from.

I was amazed!! Since I started writing on the blog we have had readers from the following places, Australia, USA, UK, Greece, Guatemala, Malaysia, Poland, Canada, Indonesia, Sweeden, France, Netherlands and Russia.

Dont get me wrong, Im aware that people read the blog... but I never thought that it was from so many places.

I love that Ellies story reaches near and far away!!!

Tuesday, January 18, 2011

CPEC initial assessment

Today Luke, Ellie and I had a appointment at CPEC where Ellie will be starting in term 1. This appointment was for the therapists to hear about Ellies history, see what she can and cant do, and for Luke and I to set some formal goals that we want to work with Ellie on.

The goals we want to start with are:
- Leg strength for weight bearing
- Trunk strength for sitting
- Working on 4 point kneeling, which Ellie is trying really really hard to do
- Communication techniques. Including signing and communication picture books
- Independant self drinking/feeding
- Working on sensory issues with Ellie

It was a very interesting appointment, we gave them alot of information and they also gave us a ton too. Luke & I spent most of the time talking to 1 therapist whilst the others did some floor work and play with Ellie to see where she is up to. They also video'd Ellie so they have a record of what she can do, and they re-visit this quite often to record her progress.

Ellie was pretty exhausted at the end of the meeting, which lasted 2 hours. The plan now is that we will go back mid February for a orientation morning. This is another very important session for parents only, where we will receive our Family Services Plan, and objectives for Ellie. It will also be a helpful and useful information session about the service and we will get to meet other parents in the group.

Then Ellie starts on the 23 February!!!!

I walked away from this appointment very excited about what this year brings for Ellie.

Ellie amazes us every day with how far she has come and I can only imagine that she will continue to blow us away with what she can achieve.

Monday, January 17, 2011

New photos - Thanks to my friend Fee

On the weekend Luke, Ellie and I went to a friends house for dinner. It was a nice night and Ellie loved sitting outside in her booster chair watching the trees, the cat & dog and being a part of everything. Photography isnt Fee's job, but it is a hobby, a hobby she is very good at & she happily clicked away at Ellie througout the night.

We ended up with some beautiful shots. Here is just a few of them...

They capture Ellies cheekiness and her beautiful smiley nature.... Enjoy!!!

Friday, January 7, 2011

Life... without work, without wihout 2 incomes & raising a disabled child

When I fell pregnant, I dont think we ever planned for me to go back to full time work, unless it was absolutely necessary. However we did plan that at some stage, possibly after 1 years maternity leave for me to do part time work, either at my previous employment, or doing hairdressing 3 days a week.

Going from 2 full time wages to 1 is hard, but it can be done, and is done by many around the world eveyr day...

But when you have a child that is born with a disability, that totally changes the scenario. Suddenly your plan for you to go back to work after 1 year is changed to going back in 3 years, 5 years, possibly never depending on how much care is requried for your child.

Most experts agree the welfare system is underfunded and tortuously complex. There are an estimated 165,300 children with severe or profound disabilities in Australia, yet their families typically receive just $105 in benefits a fortnight, plus a lump sum of $1000 a year.

Families with reduced income and the extra expenses of having a disabled child often find it hard to make ends meet.

Im not ungrateful for the $105 a fortnight I receive from the government, but I do feel that it is a bit of a joke that you receive such a small amount considering some of the things that parents of disabled children have to pay for, such as the below and alot of this is done on one wage
  • Modifications to your car or home as the child gets older
  • Medication
  • Therapy equipment
  • Peadiatric or specialist services
  • Aids & Equipment (If the costs are not fully covered by the health care system. Which most times it is not and you are left with a large gap)
  • Private therapy, if you they wait is too long for government funded therapy
I would love to hear others thoughts on this...