Being happy doesnt mean that everything is perfect.

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

Wednesday, December 28, 2011

Thursday, December 15, 2011

Slack Slack Slack... But ALOT has been going on

How slack am I? No blog posts for 3 weeks... Its not that I haven't wanted too... I've had an excuse..!! I've been tired.. I've even been napping in the afternoon when Ellie sleeps...

My tiredness will all be worth it though... as of June 23, 2012 we will have another addition to our family... That's right, Little Ellie is going to be a big sister.. We are very very excited... Nervous slightly, but still very excited...

Here is the little one at 12 weeks

I have to admit, I felt extremely sick walking back into the same ultrasound place... As my last memories of this place was weekly scans of Ellie from 2o weeks to 38 weeks to monitor her growth. The feelings I remember associated with this place was fear, upset, worries and concerns... But the amazing sonographer put me right at ease... I think she saw the fear and almost tears in my eyes before we did the ultrasound...

So far everything looks as it should, however we will do more testing and scans at 16 weeks and 20 weeks. The little thing was extremely active, so that was great to see.

We walked out with allot of photos, and a much more relaxed Mummy (+ Daddy)

Ellies Eye
As some of you may know from FB, last week we lost Ellies eye at quite a large shopping centre... I do know what part I lost it at, however it is so little that it was impossible to find... It was inevitable.. Ellie just has to rub her eye and POP it can come out... The funniest part was when I rang the shopping centre, to enquire for lost property. The conversation went like this.

Me - "I would like to enquire about some lost property that I lost last friday"
Operator - "What exactly did you loose"
Me - My daughters eye...!!!

Silence......

Operator - "You have made my day interesting, I have never been asked to see if an eye has been handed in"

So.... So far we have not found the eye, and no one has handed it in, maybe some child is rapt that he found a "Cool" new marble..!!!

This afternoon we are off to Ellies Occularist, so we can start the process to make her new eye. We have the mould from her last one, so I assume its just the painting that needs to be done.

As of now, we have actually insured Ellies eye for accidental loss or damage in and outside of the home... so there are now alot of relieved people, that look after Ellie on a regular basis, as they were always scared Ellie would loose her eye on their watch.

Tuesday, November 22, 2011

My observations of others got me thinking...

Note: This blog post is about 2 complete strangers that I observed whilst out. It is purely based on my observations and what it got me thinking about. I am not being critical in any way of these 2 people, as I don't know there complete situation.

Last week whilst I was out, in a cafe in a shopping centre, I noticed an older lady sitting near me, with a boy of about 15-17yo. You could tell this boy had some sort of intellectual disability. What I noticed for the time that I was there, was that these 2 people sat there in silence.

I did think there was a possibility that the boy could have been non-verbal. However that didn't bother me. What did bother me was that the older lady sat there with her head in the paper whilst drinking her coffee, not really interacting with this young man. I walked away slightly upset by this, however I quickly seemed to forget about it.

Today I was out again, in a different cafe, and coincidentally, the same 2 people were there too. Again, I watched them, and made the same observations as last time.

They sat there in silence, Her head in the paper, him looking around at whats going on, and no interaction going on between them. I wondered what this young man felt. Was he upset by this? Was this the norm for them? He truly looked lost

As I said previously I am fully aware that he may have been non-verbal.... However non verbal people still crave interaction and acknowledgment, like all human beings. This really made me sad... Ellie as you know is non-verbal, but that has never stoped us interacting with her, talking to her, acknowledging her. I have said this time and time again, even though Ellie has no words, she still communicates in her own way... She loves to interact.

As I said I am not being critical of this lady, it purely got me thinking... Got me thinking about Ellie... and made me never want to end up like this, and not be communicating with her.


Monday, October 31, 2011

Ellies new skill... we call her the "Bum Shuffler"

Ellie is continually amazing us lately...

4 months ago she learnt to sit independently.
She then learnt to turn around while sitting.
Most recently she can pull to stand if you hold her hands....

However the most exciting new trick she has pulled out of her bag is the "Bum Shuffle" No explanation needed, just check out the video below... There is no stopping this little girl..!!

video

Massive lack of updates... But alots being going on

First of all lets start with the first fundraiser that was held 2 weeks ago for 4P Aussie Kidz.
We set up 4P Aussie Kidz to not only raise awareness about Ellie's condition, Wolf Hirschhorn Syndrome (WHS), but to also raise money. Money to assist families in Australia who also have children with WHS. The money raised will go towards buying equipment that WHS children may require, such as standing frames, walking frames, car sets, etc....

The first fundraiser night was a LONG time in the planning.. We have been thinking about for about 1 year, but been planning and organising it since May this year, so 6 months or so.

The night was a massive success.. we had about 140 people attend. I spent allot of the night looking around and thinking... WOW... We did this...!! It was a very overwhelming night. I was overwhelmed by all the people that attended, the generosity of people and the success of the night. We had 81 silent auction items, which all sold & 14 live auction items, again which all sold. We also had the pleasure of giving away heaps of prizes, and raffles... Allot of people walked away with great gifts..!!

A MASSIVE Thank You to all who were involved, helped and attended on the night.. The night wouldn't have been as successful as it was, without you..

Thursday, October 13, 2011

A night at our local Rotary

Last night Luke, Ellie and I had the pleasure of being invited as 'guest speakers' at our local Rotary. I was so excited about this... !!

Excited about making more people aware of Wolf Hirschhorn Syndrome (WHS)
Excited about making more people aware of 4P Aussie Kidz
Definately not excited about doing my talk..

I was told I had 3o mins.. Are you serious?? 30 minutes. I was worried I couldnt even fill 10 minutes.

A few days earlier, I had a phone conversation with a lovely lady from Rotary, asking me what I was going to talk about. I said, I was going to talk about Ellies condition and our charity 4P Aussie Kidz... She said great, but maybe it would be good to talk about your pregnancy, Ellie being born, how you felt when she was born, her diagnosis, her first year etc etc etc...

Easy enough said, and it looked easy enough on paper..

I know Ellie, I know WHS, I know our life... so that part was easy to talk about. I went really well up until the point where I re-lived Ellies first 1.5 hour long seizure....

I lost my breath...I froze... I felt the tears welling in my eyes... It brought back all those feelings, thoughts, and fears...

After a moment, I collected myself, and continued... and I continued on and on.. I actually think I did end up talking for 30 minutes.

I was so happy with how it went. The message we got across was about informing people about Ellie, her condition and 4P Aussie Kidz... and even though our life is sometimes hard, and yes the first year is a bit of a blur... we are thankful for Ellie, thankful for her determination, thankful for her headstrong attitude, thankful for her humour, but overall we are thankful for the joy that she brings our lives...

Everyone at Rotary was very interested in the information that we provided, and were won over by Ellie...

We are very Thankfull to Dingley Rotary for their time.

Tuesday, October 4, 2011

I'm Slack.... SORRY....! But I have new pic's

I just realized that it has been 2 weeks since I have posted on the blog... Sorry!!!

I have been flat chat with getting things sorted for our first fundraiser for 4P Aussie Kidz, which is on the 22 October. (less than 3 weeks away)

Ticket sales haven't been as good as what I thought they would be... I have put my heart and soul into 4P and this night. So it would be wonderful if any of you, my blog readers could come along to support this cause.

It will be a fun filled night, with heaps of awesome items up for auction. There will also be some fantastic raffle and door prizes. All money raised will go towards buying equipment for children with Wolf Hirschhorn Syndrome. The same condition that our Ellie has.

If you want to buy tickets, please download and fill out the form by clicking on the link below


In the meantime here are some new pictures of our girl... Love these shots...!!!







Tuesday, September 20, 2011

If Ellie could talk...

Sometimes I wonder if Ellie could talk, what would she say...

Like when we play 'peek-a-boo' with her, and she LOVES it... Would she say "More, More"

When Luke throws her in the air (very high) would she say "Again Again"

When I pick her up from Bayside and she has a big grin on her face, would she tell me how much fun she has had today with her friends & that they had birthday cake.

When we go in her room in the morning and she giggles when she see's Luke or I, would she say, "Good Morning"

When we try and help Ellie, with anything, she resists, as she likes to do things herself and her own way.. would she say "I can do it Mummy or Daddy"

When she snuggles in at night, after a busy day... would she say "I Love You"

No, Ellie doesnt say these things
But yes oh yes, I believe she thinks them... You see it in her eyes and face...!!

Saturday, September 10, 2011

Milestones (Not the standard kind)

When Ellie was first born, I was always looking at those developmental milestones charts, 'Willing' Ellie to learn new skills, new skills that she should be able to do for her age.

This was not good for my sanity... It took up until Ellie was 2yo for me to be 'sort of ok' with the fact that Ellie wasnt going to go by the books, according to those bloody developmental charts. Ellie was going to do her thing, when she was ready... and I am now ok with that.

Today we reached a new milestone... No its not one of the standard ones, its not crawling or walking.... But I still got as excited.

Today I took Ellie to the supermarket & on previous visits, Ellie has always had to go in the baby capsule in the trolley, as she was not able to sit unaided (and as Ellie is very long she had definately outgrown the capsule)... Today I thought... 'Why not'... Why dont I try Ellie sitting in the front of the trolley?

Ellie loved it...!!
I loved it...!!

I think everyone in the supermarket thought I was crazy, cause I just kept taking photos of Ellie sitting in the trolley, like it was some mirracle... I was so impressed and proud.

Ellie spent the whole time looking down at her feet and the ground and making lots of noise..

New milestone reached. Check...




Sunday, August 28, 2011

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....!!!!

Saturday, August 27, 2011

Monday, August 22, 2011

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

Friday, August 19, 2011

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:


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)



Monday, August 15, 2011

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...




Thursday, August 4, 2011

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!!








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....