Being happy doesnt mean that everything is perfect.

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

Monday, July 18, 2011

Celebrating new tricks

Ellie has blown us away recently...

About 10 weeks ago, Ellie was practising sitting with leg wraps on and supported cushions around her. On this day, I decided to move these cusions away... and yes she proceeded to sit

(Keep in mind that before this date... Sitting was one of the things that Ellie hated doing the most)

Then about 4 weeks ago, Ellie started trying to go from lying down to sitting by herself. This she found quite hard, but as long as we held her legs down and supported them, she would sit up.

The last 2 weeks she has realized that if she tucks her toes under something stable, like a couch, mat, or tv cabinet, this will stabilize her enough so that she can sit up by herself.

Then.... 5 days ago, I caught Ellie sitting by herslf but had no idea how she got there.. There was nothing around for her to catch her feet on. I could not believe I had missed out on seeing this

But.. I didnt need to wait long to actually see it for myself. As now Ellie is doing it non stop. She will be lying on the ground, and then gets herself to sitting, all by herself. She then proceeds to do a full 360' turn/bum shuffle whilst sitting.

She has learnt all this in about 10 weeks...

This is the quickest Ellie has ever 'got something'

Whilst we have been helping her, she has done alot of this herself... you could actually see over the last 10 weeks, Ellie thinking, concentrating and working out what to do... what was her next step.

As I said at the start of this post. She has blown us away...

I keep getting her to lie down, just so, for my own pleasure, I can watch her new trick over and over and over again.

Having a child with a disability, you learn not to take any of these milestones for granted...

You celebrate them... and celebrating them we are...!!!

Saturday, July 9, 2011

Please dont look at me like I am different.

My Name is Ellie Eda Young... I have Wolf Hirschhorn Syndrome
Please dont look at me like I am different.

I have 2 legs, but am yet to walk.
I have 2 arms that I am learing to use.
I like to shake... My head, my arms, my legs and my whole body...
But please dont look at me like I am different.

I wear hearing aids.
I was born with one eye and
I am tiny for my age...
But please dont look at my like I am different.

I cannot talk, but I have so much to say.
I love it when people talk to me, you can see it in my eyes.
Just because I don't talk, it doesn't mean I cant communicate.
I will still let you know what I like and don't like...
But please don't look at me like I am different.

My parents don't want pity; they see it in your eyes.
They need support, encouragment and sometimes a shoulder to lean on.
I also don't like it when strangers stare...
Please don't look at me like I am different.

I can laugh like a normal child.
I can love like their is no tomorrow.
I can teach you things you never knew about yourself...
But please don't look at me like I am different.

My Name is Ellie Eda Young &
I have Wolf Hirschhorn Syndrome...
Please dont look at me like I am different.

Thursday, July 7, 2011

One step closer to Ellies new (3rd) glass eye

Yesterday, Ellie had to be at the Royal Children's Hospital for a minor procedure under GA.
I had to have her there at 12pm, which meant she was fasting since 7am. She didn't go in for her procedure till about 2.30pm.. so considering all this she could have easily been quite grumpy...

Nope she wasn't. she was a little trooper...!!

Whilst under GA they had a bit of a look at her right eye socket to see how it was healing after they inserted the orbital implant 5 weeks ago. All was good, healed and not infected.

The man who makes Ellie glass eye (Ocularist) was also there, his role was to take a mould of Ellie's right eye socket. As the space and shape inside her socket would have changed since the implant was put in. From this mould, he then creates Ellie's new glass eye.

I am really looking forward to Ellie getting it. Not that it bothers me, her without her glass eye, but after 4 weeks of her having no glass eye in, you kinda get sick of the 'looks' 'stares' etc... I know this really used to infuriate me, But I am sort of getting better with people looking at Ellie....

On a different note, Ellie's condition of her being born without her right eye is called Anophthalmia. True anophthalmia is said to occur in 1 in 100,00 births. Yep... Very bloody rare..!!! So would you believe that yesterday whilst at The RCH, there were 2 other beautiful kiddies with Anophthalmia. I was so surprised, but a nice surprise... I had a brief chat with both the mums, which was really nice, and would you believe one of them lives not far at all from us.

Today were off to see Ellie's occularist, to complete the next step in getting her next glass eye...

I am excited....!!

However what made me laugh yesterday was how they had to draw a arrow on her head
pointing to her right eye, to make sure they did the correct eye....

Sunday, July 3, 2011

Papparazi.... Snapparazzi!!

Should we have to make our daughters disability and our situation sound worse than it is?

Over this weekend I had to complete a ECIS (flexible support package) application form for Ellie.
It is a form that we need to complete to apply for funding to cover the costs of the following equipement that Ellie requires:
  • Lateral body splint (Second Skin) $2,070
  • Communication book $280
  • Alteration to Ellies pram, or possibly buying a new non-commercial pram that will suit her needs better $?????
To apply for funding for these items through the ECIS (flexible support package) you have to fill out an application form.

Let me tell you, filling out such forms when you have a child with a disability is an absolute HEADACHE.

The advice that we were given, to ensure we receive the maximum allocated amount was to 'give the worst case scenario', basically make your situation and your childs diability sound terrible.

Is the situation of just having child with a disability, not already bad enough?

Is the fact that we were forced into being a 1 wage family, due to me staying home to be Ellies carer and do all that is possible for Ellie, not bad enough?

Is the fact that financially we struggle, due to being on 1 wage, not bad enough?

Is the fact that, having a child with a disablity is tiring, exhausting, and puts pressure on your marriage, not bad enough?

Is the fact that you worry about the future of your child? and how you will have to money to cover all future costly expenses, not bad enough?

I dont get this... Im not saying I have the worst situation, yes there are people worse off then us....

But at the end of the day, having any child with a disability, regardless of what type, is bad enough, its hard.... emotionally, financially, physically and mentally.

Our government should not make us beg or embelish our childs disability, just to get our children entitiled to what they deserve.