Ellie's Story

Wow has it been that long...

2012-02-13T13:43:00.003+11:00

I cant believe its been almost 1 month since my last blog post... Life just seems to be very consuming at the moment...

Ellie has started back at her SDS (Special Development School) 2 days a week, which I am very thankful for. Ive always said that Ellie LOVES going here, and it gives me a much needed break.

Ellie also started swimming lessons. A local pool has started up swimming lessons for kids with special needs. We went for the swimming assessment, for the instructor to see how Ellie is in the water. After the assessment they asked a few questions, one of them was:

"What are your expectations of the swimming lessons for Ellie" Luke responded quite quickly with "We want Ellie to be an Olympic swimmer"....

The instructor was not sure what to say...

I Laughed... I think one thing Luke and I have really learnt from having a child with a disability is that you need a sense of humour, you need to laugh, (even sometimes when its not appropriate) you need to take life lightly... This helps you to be sain.

I don't think we have massive expectations of the swimming classes. We don't know if Ellie will be able to swim. What we do know is that we want to give her every opportunity to be the best that she can be. We want to give her as much experiences as a neuro typical child and let her have fun...

The swimming also gives me a break, as Luke will be taking her.The swimming will give Ellie some "Dad time"

And soon we will be a family of 4...

As most of you know we are expecting our second child. We have had some extra testing and ultrasounds, and so far everything is looking as it should. This pregnancy has been quite boring in comparison to Ellie's, but that is what we needed... a boring, uncomplicated pregnancy, which allows us to just "enjoy" being pregnant... not worrying about what your next ultrasound or OB appointment was going to bring.

I am intrigued to see how Ellie responds to our new addition.

I am nervous about going from a family of 3 to 4.

I am worried about how I will do all that Ellie needs as well as have a newborn.

I am excited to meet our new addition.

Life will be busy, but it will be worth it in the end...!!!

Lost for words...

2012-01-14T14:58:00.001+11:00

Actually I am not lost for words... However the words I want to use would probably be deemed inappropriate in a public forum like Blogger.

OK, here it is. Today when I logged onto Facebook, there were quite a few posts going around about a family in America who have a beautiful little girl called Mia. Mia has Wolf Hirschhorn, like our Ellie.

Mia's family have been advised that she will require a life saving kidney transplant in the next 6-12 months. However her parents have been advised by Mia's Doctor of 3 years at CHOP (Children's Hospital of Philadelphia) that she cannot have the life saving transplant that she requires because she is 'Mentally Retarded'

The family even said that they didn't want Mia's name to go on the wait list, they were happy to be tested themselves and have their family members tested to see if anyone matched what Mia required.

They were told. "No, she is not eligible because of her quality of life, because of her mental delays"

What the hell...!!!

I could not imagine being told that because Ellie had a disability, because she is cognitively impaired, that because she has an intellectual disability (That's the PC way of saying it by the way CHOP) that she could not have a transplant that will SAVE HER LIFE....

These Dr's are playing God with this child and family.

Alcoholics get new livers, and I'm sure there are quite a few that still drink
Smokers get new lungs, but I'm sure that doesn't stop them all from smoking

But this beautiful little girl, who didn't choose her life..... who didn't choose to be born with Wolf Hirschhorn Syndrome cannot get a life saving transplant, because she is labelled 'Mentally Retarded' and some Doctor at CHOP says so.

Now I am no legal or medical expert by any means, however this does not sound right...

It is not ethical
It is not moral
And most of all it is not HUMANE

CHOP... I am all the way down in Australia, can you beleive this story has reached us here... I hope the public outcry that is happening right around the world, makes you 'shiver in your boots' and rethink your decision.

Mia has the right to live...
Her family have the right to continue to enjoy her in their life...

A online petition has been started up, to get CHOP to allow Amelia the chance at having this life saving transplant. Please take the time to sign:

www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive

To read Mia's story told by her parents, please visit here:

www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Our little poser... she melts my heart

2012-01-14T14:05:00.004+11:00

A while ago, a lovely lady called Melissa from Memories Of Mine Photography contacted me. She had come across Ellie's blog, and also 4P Aussie Kidz. She wanted to do something 'nice' for us, she wanted to photograph Ellie for us. Up until now I have never had any professional shots done of Ellie, as I always had an excuse...

I wanted to wait until she had her cleft lip repaired.. Tick

I wanted to wait until she had an artificial eye... Tick

I wanted to wait until she was on a better seizure med, so she didn't look zoned out... Tick

I wanted to wait until she was sitting... Tick

You get my picture, I was always putting it off... for reasons that I thought would prevent us getting the perfect picture...

When this opportunity arose, I had no other reasons. I had no other excuses. Why not? I thought.

When we arrived at the location, we were worried weather Ellie would sit still long enough, as she is constantly bum shuffling, making it hard to get a photo, let alone many photos...

Ellie was brilliant. She sat still, she smiled for the camera.... she was actually posing for some shots. The end result..... BLEW US AWAY.

Ellie's eyes shone.. Her skin was so pale & perfect... Her smile melted my heart... This was our girl, and she was captured perfectly... Thank you Melissa

Here are just some of the shots.... Enjoy

Papparazi.... Snapparazi!!

2011-12-28T15:05:00.004+11:00

Fun in the sun...

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

2011-12-15T14:20:00.004+11:00

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.

My observations of others got me thinking...

2011-11-22T15:14:00.003+11:00

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.

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

2011-10-31T15:40:00.002+11:00

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..!!

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

2011-10-31T15:33:00.004+11:00

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..

A night at our local Rotary

2011-10-13T21:18:00.005+11:00

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.

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

2011-10-04T21:23:00.005+11:00

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

BUY TICKETS TO 4P AUSSIE KIDZ FUNDRAISER - 22 OCTOBER

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

If Ellie could talk...

2011-09-20T16:15:00.006+10:00

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...!!

Milestones (Not the standard kind)

2011-09-10T21:37:00.004+10:00

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...

My 'Loves' lately....

2011-08-28T18:40:00.002+10:00

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!!

2011-08-27T20:59:00.010+10:00

Fun in the park

Cheeky Girl

My Little Ballerina

Happy 3rd Birthday my princess

2011-08-22T16:29:00.004+10:00

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...!!!

2011-08-19T15:08:00.001+10:00

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!!

2011-08-16T15:37:00.002+10:00

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

2011-08-15T19:18:00.006+10:00

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..

2011-08-04T21:02:00.003+10:00

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!!

Celebrating new tricks

2011-07-18T14:49:00.004+10:00

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...!!!

Please dont look at me like I am different.

2011-07-09T10:35:00.008+10:00

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.

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

2011-07-07T07:31:00.005+10:00

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....

Papparazi.... Snapparazzi!!

2011-07-03T14:48:00.002+10:00

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

2011-07-03T14:23:00.002+10:00

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.

This little girl is gonna prove you wrong...!!

2011-06-13T20:54:00.002+10:00

Ellie is amazing me at the moment... To be honest she has blown us away in the last 4 weeks. % weeks ago, sitting was still one of the things that ellie hated the most. Everytime I would try and get her to practice sitting, she would throw herself on the ground, wriggle and basically do anything to not sit....

Well...... 4 weeks ago this all changed. Ellie started to show a interest in sitting with her leg wraps on, and with cushions around her..

Fast forward to now and this is where we are at...

If you lightly touch her legs to give her support, she will do the biggest sit up and get herself into the sitting position and sit for up to a few minutes.

If she is on the floor, she is trying to go from lying to sitting, by doing the right moves and rolling onto her side and trying to push up on her arms.

Twice she has even turned herself to face the other way, all whilst sitting, all by herself...!!!

This girl is blowing me away... and im pretty sure, she will keep doing this in the years to come.

We were told that Ellie may not sit, walk, talk etc... all I can say is

Dr's... This little girl is gonna prove you all wrong...!!

Ellie eye surgery update

2011-06-04T15:29:00.002+10:00

Yesterday Ellie was booked for eye surgery. We had to be at The RCH bright and early at 7am. Luckily enough Ellie was one of the first going in for surgery. We realised yesterday that sending Ellie in for surgery is harder now that she is older. She is more aware of things now, and that makes it hard.

After a chat with a nurse, surgeons registrar, and anaesthetist we sent Ellie in for her surgery, which was to take 1.5 hours. Luke went in with Ellie for the first part, where they put her to sleep with gas.

What surgery was done?

Ellie had surgery to remove a 12mm orbital implant. (This sits at the back part of her eye socket) and they put a bigger one in (16mm). The whole idea is that this will stretch out the back part/bones of Ellies eye socket, so we can fit a bigger glass eye in.

We were only in for half a day, and Ellie is doing quite well. She is quite a trooper when it comes to surgery. She doesnt seem to be in too much pain. Which is amazing, considering how swollen and purple her eye is.

Her eye lid is stitched closed, and she wont be able to wear her glass eye until she gets her new one, which will be 6-8 weeks, as her most recent glass eye now wont fit with the 16mm implant in.

She will have to see her surgeon in 2 weeks, to see how it is all healing up. She will then have to go back to The RCH in 5 weeks for a examination under anaesthetic as well as having a mould taken, so her new glass eye can be made.

As well as having her eye surgery yesterday, they also re-did Ellies grommits in her ears, as one had come out and one was not in the correct place. She had to have these re-done as she will be sitting some hearing tests in a few weeks as part of her assessment for a cochlear implant, and this will give more accurate results.

Cochlear Implant - is this something Ellie will benefit from??

2011-05-19T14:20:00.003+10:00

This week Ellie had an appointment at The Cochlear clinic at the The Eye and Ear hospital to discuss if Ellie would benefit from a Cochlear Implant. This is something that entered our thoughts recently when Ellies hearing test came back with a severe to profound hearing loss, where as previously it was mild to moderate.

From our appointment this week we realised it is long process involving information sessions, hearing tests, hearing tests and possibly more hearing tests. MRI's & catscans, communication assessments etc.

So.... After sitting through an information session, providing a history of Ellie, and meeting a surgeon, we have been told that Yes a cochlear implant may possibly benefit Ellie. The first step is to start doing some hearing tests to get some more results to base this on... However as Ellies right grommit is not in any more, they are wanting to put this back in as she has alot of fluid behind her ear drum. This will prevent us from getting accurate hearing tests results.

Ellie is booked in for some eye surgery at The Royal Childrens hospital on the 3 June, so we asked the surgeon if we could organise for the grommit surgery to be done on the same day to eliminate an anesthetic.

You would think this would be easy... but in reality it isnt. Ellies eye surgery is being done by a surgeon who doesnt normally operate at The RCH, however has got permision to operate on a Dr's list there.

The next issue is that the surgeon from the cochlear clinic also cannot operate at The RCH unless on another Dr's list. However Dr's at The RCH can only allocate slots to a certain amount of surgeons...Confused yet?!?!?!

Thank goodness one of Ellies wonderful doctors, receptionists is trying to co-ordinate all of this for me... Fingers crossed!!

To add another spannner in the works, we also asked if the Catscan and MRI could also be done on the same day.... again to elminate another anesthetic... To be honest.. I think this last request may prove to difficult, but again, fingers crossed.

Update

2011-05-12T15:44:00.000+10:00

Its been a bit longer than normal since my last post... life has just caught up with me, plus I havent been 100% ... Since my last post Ellie has started Bayside Special Development school. She is going every Tuesday and Thursday. At this stage she is staying there from 9am - 1pm, and we will slowly work up to her staying there for the normal time of 9am - 2:30pm.

The first day that I left her their, felt weird. I was excited, proud, sad, nervous, hesitant... But the teachers and helpers all made me feel at ease. They were so excited to have Ellie there... The first day I only left her their till 12pm. When I arrived back on the first day at 12pm to pick her up, Ellie didnt see me arrive. She was sitting in her pram with another little girl near the piano, whilst one of the teachers played the piano. Ellie was LOVING it, her head was shaking, her arms and legs were dancing... She had no idea I was there... Afer about 5 minutes, she turned around and saw me... she then gave me the biggest smile!!

Ellie seems to be really enjoying it...

The teachers just LOVE her...

Each day when I pick her up, they tell me all that she has done...

Today I was even told that Ellie was the 'best' in their morning circle, where they sing Good Morning....

All this positive stuff has made me feel very comfortable with leaving Ellie there... I love that Ellie is enjoying it, and over time making new friends!!

_____________________________________

Lately we have also been practicing Ellies sitting. While we do this she has her leg wraps on, as these stabilise her. We start of with Ellie having a U-shaped cushion around her to support her, and make her feel safe. But over time she starts to sit up more and more, and rest on the cushion less and less... I even removed the cushion, I think without Ellie realising... and she still managed to sit... for longer than she ever has...

For some reason, I have always thought... "Will Ellie ever sit???""

I have to admit, sometimes I have had doubts.. Yes I always try to remain positive and think she will, but it is hard when sitting is a skill most kids start at about 6 months and Ellie is almost 3 yo and not sitting... I suppose I would like her to start seeing the world from a different view too... Anyway... check out the pics...!!

Papparazi.... Snapparazzi!!

2011-05-02T14:54:00.004+10:00

Humour or Offensive??

2011-04-30T13:03:00.005+10:00

I believe I have a good sense of humour...

I believe that I like a good joke...

But recently something I read on Facebook, bothered me... It didnt make me laugh, I didnt find it funny, even though the person that wrote it said it was a 'joke'... it was just a comment.

The comment was, Facebook - is as slow as a disabled person on heroin....!!!!

Ive bloged before about the use of the word retarded and disabled in the 'wrong' context. When did it become funny or right to use these words to make fun of the disabled

You hear it all the time... Oh your so retarded... Stop being a spastic...

What is retarded?

According to the oxford dictionary:

Retarded is: Less advanced in mental, physical or social development than is usual for one's age

Retarded is not someome who just runs funny, nor is it when your friend trips over something, nor is it when facebook runs slow.

Retarded is a human being, wether it be a adult or child , who is not where they should be in mental, social or physical development.

These human beings have feelings, their parents or carers have feelings. To use these words demeans peoples with disabilitys, and causes offense.

This is something I wont back down from... when people around me use the word retarded, spastic or disabled in a demeaning mannour, I will speak up...

I hope one day that those people out there who think it is funny to use these words in an offensive manner will respect disabled people for what they are, Human beings, like everyone else... with feelings

4P AUSSIE KIDZ UPDATE - DGR & TCC Approved

2011-04-14T14:39:00.003+10:00

I know it'ts been a while since I have blogged an update on where we are at with '4P AUSSIE KIDZ'

The reason being... 2 months ago we hit a speedbump. We had applied to the Australian Taxation Office (ATO) for Deductible Gift Recipient status (DGR) and to be a Tax Concession Charity (TCC). However our application was knocked back and we were advised that we had to apply under a different DGR category. After many hours of putting our second application together and reading through our rules and statement of purpose and making ammendments, all our hard work paid off. Yesterday I received a phone call from the ATO advising that our application has been approved.

This is a massive WIN for us... There are many advantages to DGR status. DGR status has 2 key advantages: Firstly people are more likely to donate to your oganisation if you have DGR status (because they get a tax deductible receipt), and secondly, most philanthropic grantmakers require their applicants to have DGR status.

So now 4P AUSSIE KIDZ has a board, a logo, and DGR and TCC status....

What next....???

Sit down with the board to discuss the below steps
The next step is to build a website... I have a few people seeing where they can help here
Start planning a fundraiser launch... Golf day/dinner
Contact golf clubs to hold launch
Contact business's for items to auction off at fundraiser launch and use as prizes
Contact business's for sponsorship for fundraiser launch
Promote 4P AUSSIE KIDZ to WHS families, to let them know our plan of action for fundraising and how those funds will help their kiddies with WHS
Promote 4P AUSSIE KIDZ to the wider community to raise awareness about WHS and in turn hopefully raise funds

To add to this... if you feel you have items that you could donate to auction off at our fundraiser launch, please email us at 4paussiekidz@gmail.com

Items that we are after are sporting, movie and music memorabilia, holidays or holiday vouchers, good's & services of any value, hampers, wine etc... If you feel you can assist in any way please email us

We have definately come along way since the initial 'dream' of what we wanted to acheive. But in no terms are we done yet... this is just a small step to the bigger picture. This has not been all done by myself either... My cousins husband, Jonathan has been the other driving force behind this all. Jonathan has as much passion about making 4P AUSSIE KIDZ a reality as I do.

Ellie better... YAY!!!

2011-04-12T18:41:00.003+10:00

Ellie is finally better... after multiple visits to the Dr's, one night in hospital and many tests latter... Ellie ended up having a common virus that consists of fevers, vomitting, diarrhea, tonsillitis etc... so that explains all that she had.

The good thing is that Ellie is better!!!

The bad thing is that I now have tonsillitis...Aggghhhh. I am feeling pretty crappy to be honest. My mum offered to have Ellie for a day or two to give me time to rest and recuperate. I have taken her up on her kind offer, dropping Ellie off there this morning.

I dont like sending Ellie away more than normal, but have to get myself 'back on track'

Here are some latest pic's of our cheeky girl.... ENJOY!!!

Ellie's Sick

2011-04-02T19:32:00.002+11:00

Ellie is sick... It started earlier this week when her left ear was slightly gunky, nothing major. We just used ear drops for a couple of days. She also had a very slight temp Monday this week and what we think was a viral rash on her left shoulder. This all pretty much cleared up by Wednesday. However Friday morning we were out and Ellie had her hearing aids in, as her ears had cleared up... well so I thought... When I took her left hearing aid out, her ear was FULL of glue like gunk... I also thought Ellie felt slightly warm, so thought it best to go home and not do what we had planned for the afternoon.

When we got home, before Ellie went down for a sleep, I checked her temp..... 39.5 celcius...I was shocked and worried. I hate temps in Ellie as there is a increased risk of her having seizures.

We went to the Dr that afternoon... Ellie is back on the ear drops, on antibiotics, she is also on eye drops for conjunctivitis.

Since Friday with panadol and neurofen her temp has still been between 38 & 39.5, I am really hoping this starts to decrease tomorrow.

Ellie has also had a few vomits this week and today it appears that she has a bit of a upset tummy too... Poor thing, she just looks miserable!!

I am not looking forward to Winter if this is a sign of what is too come.

CPEC Update

2011-03-23T14:34:00.006+11:00

Its been almost 4 weeks since Ellie started at CPEC. Alot of friends and family have been asking;

"Is Ellie enjoying it?"

"Have you noticed improvements with her?"

To be honest if Ellie could talk, I dont think that Ellie would describe it as enjoyable right now. It is bloody hard!!! Physically hard for Ellie. Mentally and emotionally hard for me.

Yes I can see how that in the long term, what we are doing at CPEC will help Ellie, make her stronger, make her understand how to move and use her body and hopefully help her communicate. So yes there are positives, they will come with time.

But for now both Ellie and I come home exhausted. One of the hardest parts is when we are doing something physically hard with Ellie, and she crys. I do try and push her a little bit, as I dont want her to think that if she crys, that immediately we will stop. But.... How hard do you push her? As a mother it is very hard to push your child to benefit them, when they are crying...

However that aside... the therapists are lovely and unbelievably helpful and the other mums so lovely... I get a real buzz when we all celebrate a childs success, no matter how small.

Here are some photos of Ellie enjoying play time & lunch at CPEC.

Here are some other new pics of Ellie... ENJOY!!

Shower time fun...

2011-03-18T15:55:00.007+11:00

Papparazi.... Snapparazzi!!

2011-03-16T15:50:00.002+11:00

Eye surgery

2011-03-11T13:02:00.004+11:00

Yesterday we had an appointment with Ellies eye surgeon. This appointment was booked as the specialist that makes Ellies glass eye, doesnt think that we could put a bigger glass eye in Ellies right eye socket. Even though its been 6 months since her last mould and new glass eye. You just cant put a bigger glass eye in and expect that it will stay in, if we put something in there that is too big, it wont stay in. We need to make room for a bigger glass eye.

Ellies eye surgeon measured both Ellies eyes. Yes, her right eye socket has grown. Considering when she was first born there was virtually no room in her right eye socket. However, the only way that we are really going to get Ellies right eye socket to expand, is if there is something in there expanding it.

At the moment Ellie has a 12mm orbital implant in her right eye socket. This is something that was placed in back in February 2009 and is still in there. Ellie also had a expander put in, November 2009. This stayed in for 4 weeks, and her eye lid was stitched closed.

After our appointment yesterday with Ellies eye surgeon, his plan is to remove the 12mm orbital implant, and put a bigger one in. With the view to also put another self expanding hydrophilic expander in for 4 weeks. The purpose of all this is to help Ellies right eye socket grow.

We are now waiting to hear of a surgery date.

Hearing Aid frustrations...

2011-03-08T13:34:00.002+11:00

Ellie has new hearing aids. These are more powerfull than her last ones... which in turn will help her hear more. Fantastic I hear you say!!!

Yes the fact that they will help Ellie hear better is great... However apparently more powerfull hearing aids, means that the hearing aids have to be bigger. The bigger hearing aids are not a problem. When you have a child that needs a glass eye, AFO's, leg wraps etc, you get used to all the "extra things" your child needs.

The problem is that bigger hearing aids mean they do not stay totally put behind Ellies ears. As Ellie is still not sitting and mainly on the floor, and does not stop rolling around. This means that the hearing aids can come loose from behind her ears making it easier for her to remove. The solution that we have been given for this is ..... Double sided tape!!! I was horrified when I was told this. I dont mind my daughter having to have a glass eye, hearing aids or AFO's but the thought of having to put double sided tape on behind her ears... I really dont like. Not only does it not pull at her hair, but it looks like it is making her skin dry

The second thing about the new hearing aids is that when Ellie leans on them (which she does alot as she moves around on the floor) they SQEAUL....!! This drives me insane, and I can only imagine that it cant be too nice for Ellie.

I expressed my concern about this to the audiologist, however he stated that as Ellie needed more powerfull hearing aids.... more powerfull means bigger.... Are you serious??!!??!!

What I dont get that in this day and age, with the advancement of technology, that a child as little as Ellie (and Im sure there are smaller kiddies than Ellie that need hearing aids) have to put up with squealing hearing aids and double sided tape....!!

Ok vent over...!! We have a appointment in 3 weeks time, so I am going to give her hearing aids a really good go between now and then... as yes they are making a difference, I do see her respond a bit more.

But I was thinking... the hearing aids are obtained through a government funded business that provide hearing aids free of charge to children and pensioners. Maybe these are the only hearing aids that the goverment will fund?? Maybe there are other smaller hearing aid options out there but not funded by the government as they are to $$$

Hmmm just a thought... Might need to do some research as I am not keen on "double sided" taping Ellie every day

The Mother at the Swings - By Vicki Forman

2011-03-01T14:02:00.002+11:00

Todays post is a beautiful story that I found on another blog that I follow. It is called

'The Mother at the swings' By Vicki Forman. I absolutely loved this, and felt I had to share it. Enjoy!!!

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

First day at CPEC

2011-02-27T15:10:00.004+11:00

Last week Wednesday Ellie and I had our first morning at CPEC . I have to admit I was excited, nervous, & tired. Ellie decided that on that morning she would start her day at 5 am...

Maybe she too was excited about CPEC.

There are 8 other kiddies in Ellies group, ranging from 18 months to 2.5 years. There is also about 4 therapists in the group too. I have to admit as it was our first session, it passed as a bit of a blur. There was so much going, and so much for me to take in.

The morning started off with doing some sitting. Each child has all their own equipment, one of them is like a big wooden bed, and to do sitting the child sits on the floor in front of it on non slip material. Ellie wore her leg wraps whilst she was sitting and this seemed to help. We then had about 30-4o mins to choose what sensory activity to do, the options were trampoline work, fitball work, rocker board etc. Ellie quite liked this... But this did not surprise me. Ellie has always loved movement etc.

After this we did some tummy work, with me trying to help Ellie to creep forward on her tummy. This was where really started to get unhappy. To be honest I think she was more tired because she was up at 5am, than not liking what she was doing. I gave Ellie a cuddle to calm her down and she feel asleep on me. She had a 30 min cat nap on a matress on the floor. I actually didnt think she would wake up... but she did and the proceeded to do the rest of the morning, which was snack time, and then some singing and hand work

I really did enjoy the morning... and yes at some stages I felt like a fish out of water... There is alot of new things for me to learn too... but that makes it all the more exciting

Tomorrow being Monday we are back at CPEC again.

Here is a pic of Ellie, fast asleep at CPEC..... She was exhausted!!!

Update: Ears and Eyes

2011-02-17T16:22:00.002+11:00

Ears:

This morning we had a appointment at Australian Hearing to get new moulds taken and new hearing aids as one of Ellies hearing aids ended up in the wash. I mentioned that Ellie hadnt been responding as well with her aids over the last few month and asked if her new hearing aids settings could be adjusted to make them louder for Ellie. We also discussed Ellies hearing test results, from her hearing test at the Royal Childrens Hospital last week. In this test and also in the last test Ellies hearing loss is coming up as severe...

Which was a surprise to me as I thought she was in the mild - moderate catergory. They suggested a different type and brand of hearing aid, as the ones that Ellie had, do not have enough power for a severe hearing loss and could not be made louder. So...... we are getting new types of hearing aids.... They said that Ellie will really notice a difference with them.... We get them on 1 March

Eyes:

This afternoon we had an appointment with Ellies Ocularist. This is a lovely french man that makes Ellies glass eye. As it has been 6 months since Ellie got her last glass eye, he wanted to see her to see if there was the possiblity of making another one, a bigger one. His thoughts were that he would have to put her under GA to take a mould to see exactly how much more room was in her eye socket. However with saying that, he also said that if there was more room, there wouldnt be alot more room than what there is now... So wouldnt suggest putting her under a GA. His thoughts were that we should go back to see one of Ellies other specilists, her eye surgeon.

He wanted us to discuss with him the below points and get his thoughts:

Do we get another eye expander from Germany? Ellie has had this before to create more room in her eye socket
Chat about cranial facial surgery (As not only is Ellies eye socket smaller, her bone structure around her right eye is smaller and flatter) Is this an option yet?
Create a long term plan for Ellie with the goal being to get Ellies face as symetrical as possible.

We have an appointment with Ellies eye surgeon on the 10 March to discuss these points and work out the next step for Ellie

Saying goodbye is never easy...

2011-02-15T13:27:00.005+11:00

As Ellie is starting at CPEC next week and Bayside Special development school in term 2. This now means that we are no longer eligible to receive therapy through Early Intervention Services (government funded)

For the past 18 months Ellie has been receiving physio, occupational therapy and speech therapy through Specialist Childrens Services. I honestly dont think that Ellie would be where she is today and doing what she is doing without the great support of these therapists.

Yesterday Ellie had her last session with her fantastic physio Trish. I was sad to have this last session, its always scary after trusting someone for so long, to say goodbye... But with saying that as much as I am sad about saying goodbye to Ellies therapists, I am also a little bit excited about 'what the next chapter' holds for Ellie.

Going to CPEC means, twice a week for 3 hours Ellie will be in a environment, with other children with either Cerebral Palsy or other condtions/syndromes. Where she will receive constant support, therapy, and guidance to further her skills and confidence.

It also means that I get to 'get out' and meet more parents in similar situations.

Yes... We will be busy

Yes.... Ellie will be tired and possibly scream for the first few

But it will all be worth it.....

____________________________________________

Here is a pic of Ellie after she thought it was a good idea

to throw her lunch all over herself..

This photo makes me smile!!

RUN FOR THE KIDS UPDATE:

As you may know Luke, Me and a friend Tracey are taking part in the 5.2km fun run, called RUN FOR THE KIDS. This is to raise money for the Melbourne Royal Childrens Hospital. We had a fundraising goal of $500. So far we have raised $160.

To donate please visit the below URL:

http://fundraise.goodfridayappeal.com.au/melissa_young

Running to raise money for the Royal Childrens Hospital

2011-02-11T08:14:00.003+11:00

Every year the Roayal Childrens Hospital has an event called the Good Friday Appeal.

The Good Friday Appeal is a unique fundraising activity that brings together people from all parts of the community in a special way. The common goal is to raise money for the Royal Childrens Hosptial in Melbourne.

We have been at the RCH a couple of times with Ellie, her amazing peadiatrician is also based there. My cousin cameron has been there many many times for heart surgery and follow ups. The RCH has such an impact on the lives of sick children and their families.

To help in a small way Luke, me and a friend are taking part in the 5.2km Run for the Kids 2011 on the 17 April to raise money for the RCH

We have set a fundraising goal of $500. Please visit our fundraising page below, where you can donate on line. I can also send out pledge forms. Please let me know if you would like some of these.

Click on the link below to be taken to our online donation/fundraising page

http://fundraise.goodfridayappeal.com.au/melissa_young

Papparazi.... Snapparazzi!!

2011-02-09T16:01:00.005+11:00

Were continually taking new photos of Ellie... here are some more new ones... I really think she is looking grown up

Ellies 'way too cute' bathers!!

Weight update..

2011-02-03T13:58:00.002+11:00

Ellie had a weight check yesterday. She has gone from just under 8kg's (17.6lbs) to

8.6kgs (18.92lbs) in 2 months. This is a massive 600gram increase. I cant remember the last time that Ellie put on that much weight.

Maybe all the custard, cream and milo deserts are starting to help her...

I wonder what she thinks...???

2011-02-02T07:30:00.003+11:00

Lately I have had a lot of people ask me "How do you know if Ellie likes something" and "How do you know if she dislikes something" When you have a child that is non verbal I think it is a mixture of 2 things that help you work these out.

1. As Ellie cannot verbalise her thoughts she is forced to let us know in other ways

2. As a parent we have had to become aware of what she does in these situations.

For example when Ellie likes something, she laughs, shakes her head, moves her hands or feet or whole body, or grins with anticipation.

When she doesnt like something she can scream, screach, arch her back, try to throw her body out of the highchair, pram, chair etc.

Does this paint a clear picture??

Working out what Ellie likes & dislikes is not hard to do....

However one thing that has entered my mind alot lately is working out 'what she thinks', 'what goes through her head'

There are many times I catch her looking at Me, Luke or another family member, a toy, Tv with a look on her face. A look of knowing... knowing that this person is 'one of her own', knowing that this toy is her fave and she shakes with excitement... But what does she think??

I would love to know the thoughts that run through her head?? In time we are hopefull that Ellie will become somewhat verbal and that she will be able to verbalise her thoughts.... But in the meantime we will be left wondering, and left to work out if we can deceifer her thoughts through her actions

WOW!!! There some interesting stats

2011-01-26T21:17:00.002+11:00

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!!!

CPEC initial assessment

2011-01-18T21:23:00.003+11:00

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.

New photos - Thanks to my friend Fee

2011-01-17T09:56:00.009+11:00

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!!!

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

2011-01-07T13:52:00.004+11:00

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...

2010... The year that was...

2010-12-31T12:46:00.002+11:00

2010 was a better year than 2009. Here are some of the positives that 2010 brought:

- Ellies seizures, even though still happening, where much more controlled in 2010

- Succesful grommit surgery

- A very succesful and fun filled day with "A Run for Ellie" (Thanks Jeff & Trace)

- Ellie started rolling from front to back and back to front

- Ellie can lie on her tummy for short periods and hold her head up

- Ellie received her hearing aids

- Ellie received her standing frame and can now weight bear for periods of up to 25 minutes in the frame and about 30secs - 1 minute without with us holding her arms

- Ellie started to eat textures such as risotto

- I fought hard to get Ellie into a program that originally wouldnt accept her because of where we lived

- Ellie got her second glass eye, that was suprisingly bigger than her first

- We have also got to met meet 4 families with children with WHS

- Ellie started Hydrotherapy

& Lastly my favourite positive..... Ellie has become so much more interactive, aware, smiley, funny etc... Her personality has blossomed in 2010 and I feel this has so much to do with her being alot healthier this year

2010 also brought some hard times which included:

- The discussion about fitting Ellie with a gastric feeding tube as we were struggling to get Ellie to put on weight, in fact for about 3 months she lost weight constantly. Currently her weight is 8.3kgs and her weight gain, though not massive, it is slowly increasing.

- 7 weeks of brochilitis in winter which pretty much kept us house bound, and brought on violent vomitting from coughin

- A hideous rash caused by a viral infection and a UTI, all which brought on some small seizures

With saying all that I truly feel that 2010 was a better year health & develpment wise for Ellie. I am also exicted about what 2011 will bring for Ellie as she is starting at CPEC in term 1 for their conductive education program and also starting at Bayside Special Development school in term 2 for their early education program.

My wish is that Ellie keeps developing and learning new skills as she has done in 2010.. Bring on a healthy and happy 2011

Thank you to all my readers... alot of the time I forget that what I write, people are actually reading. I appreciate all your comments and thoughts on what I post.... Thank you!!

Camera crazy!!!

2010-12-30T21:06:00.009+11:00

Sorry for the overload, but we have taken heaps of pics lately. Mostly from our week away with Lukes family, and some of meeting another WHS beauty, Caitlin

Off on holidays..... YAY!!!

2010-12-20T22:04:00.003+11:00

Just a short update to let you all know that we are off on holidays from tomorrow till the 28 December.

Luke, Ellie and I are going to visit Lukes family. So I probably wont be posting any updates. However ill be sure to post about our holiday and of course lots of photos when we are back.

Wishing all my readers a Safe and Happy Christmas!!!!

4P AUSSIE KIDZ Bank account set up

2010-12-14T12:13:00.004+11:00

We can now cross off another job on our 'To do' list for 4P AUSSIE KIDZ.

Yesterday we completed setting up the 2 bank accounts required. One of these is just a ordinary account, and the second is labeled a gifting account. This will be required once we receive DGR status from the Australian Taxation Office, so if any one requires a tax deductible receipt, their donation will be required to be made to the gifting account.

(However in the mean time if you wish to make a donation you can still do so, we are just unable to provide tax deductible receipts. We are hoping to be ready to provide these early in the new year. If you would like the bank account details to make a donation, please email me at 4paussiekidz@gmail.com)

I really feel like we have come along way from when this was initially just an idea....

Dont get me wrong there is still alot to do, especially when it comes to organising our first 'annual fundraiser' for mid next year... But hey Im excited about that!!!

Dont know if I ever posted our finalized logo on the blog either, here it is:

Ellies plan for next year...

2010-12-10T15:04:00.002+11:00

Some of you may remember a post I did back in August, (click here for that post) about a particular program that I wanted to get Ellie into, at the Cerebal Palsy Education Centre (CPEC). But her name could not go on the waiting list because of where we live, as they only take kids from the eastern region.

CPEC is a one of a kind in Victoria, this program is not offered any where else. I truly believed that Ellie would benefit greatly from this program, and didnt find it fair that kids with disabilities miss out on something so unique because of where they live.... so I took this battle on, and in the end she got her name on the waiting list, and Ellie wasnt the exception, they changed the rules and accept kids from all regions now.

Last week we receied a letter of offer for 2011. Thats right Ellie has got a spot at CPEC, starting in term 1. So every Monday and Wednesday from 9:30am - 12:30pm Ellie will attend the program with me. This is a family centred program, where I participate with Ellie. I am stoked about this as I have heard so many stories from other families and also in the media about the great work that CPEC can acheive with children.

The other good news is that Ellie has also received a place, starting term 2 at Bayside Special Development school in their Early Education Program.

This will be every Tuesday and Thursday from 9am - 2:30pm, this is a program for kids with special needs and focuses on development of communication, social and cognitive skills, and gross and fine motor skills in a play based environment. Bayside SDS has its own therapists such as Physio, OT, speech & sensory on hand to provide support to the groups.

I am unbelievably excited about what 2011 holds for Ellie, I am looking forward to Ellie attending both these programs as I think it will be massive for her development, I am excited to see how she will develop, it will also give Ellie more of a chance to interact with other children.

What this also means is that I will start to get a bit more of a break.... as I will have 2 days to myself at home without Ellie

Am I looking forward to this.... Yes...

BUT.... I am also nervous & scared and will probably be a blubbering mess in Term 2 when I drop Ellie off for her first full day at Bayside SDS. You see I have never left Ellie in childcare or occasional care etc.. I have only left Ellie with a handfull of people.... family and council carers.

I know she will be fine.... I know I will be fine.... I know that she will be taken care off and most of all.... I know that this is the best thing for her.

I may just need some kleenex next year.

Variety Annual Childrens Christmas Party

2010-12-02T15:09:00.006+11:00

Wow!!! What a day. Ellie received a invite to the annual Variety childrens christmas party. For those of you that dont know who Variety are, they are a not for profit group that help kids who are sick, disadvantaged or who have special needs.

My mum, Ellie and I got into the city at 9:30am. This was our first time to attend the annual childrens christmas party and I have to say I was blown away. There was approximately 5000 people there, made up of children, parents, carers, teachers etc.

When we walked in you were greeted with a carnival like atmosphere. There were giant slides, jumping castles, face painting, alot of fast rides for the older children, slower rides for the littleies, animal petting zoos, santa visits, wheelchair basketball, fencing... etc etc... the list goes on. The also had performers singing and breakdancing. They also had free food for lunch and the coffee club serving free coffee.

With all this going on, you could imagine there was alot of people, lights and noise. Ellie was mesmerised!!!.

We got Ellies face painted like a cat. She wasnt too sure of this, she cringed every time he painted a whisker on her face... but the end result was toooo cute!!!

I also took Ellie on the tea cup ride, which she liked at first, but I think by the end she was very overwhelmed by it all.

I could not get over how well organised this party was and how many volunteers there were, everyone that was volunteering was happy and helpful. Without the volunteers this would be impossible, so they do an amazing job!!

By 1pm Ellie had had enough, and on your way out you collect a present. Ellie received a fantastic activity castle, which is a square activity centre... which I think she will love

Thanks Variety!!! By the amount of smiles I saw on the kiddies faces as I was leaving, they all had the best day!

Here are some pics of our fun morning!!!

Here are some extra recent pictures

Little does Ellie know that this 'fun' in the washing basket

is actually therapy... she LOVED it

Looking very grown up in a 'big kids' chair

Ryley, Rachel, Braeden, Ellie and Elliott

at our mini WHS catch up

Wolf Hirschhorn catch up

2010-11-29T14:18:00.003+11:00

On saturday afternoon, Luke, Ellie and I drove down to Ballarat to meet up with 3 other families who have children with WHS. What a great night we had, there were the Dridans and the Sheens all who we had met before and there were also the Doecke's who we hadnt met before. There was alot of talking, and sharing things about what I kids did, do or certain things that help our kids. There is real comfort in talking to other parents who have been where you are. There is a real bond through our children. This is something that I cherish

It was amazing to see the children who are all older then Ellie, and who do so well. Some sit, some walk, and some even talk.... all things that the medical world said our kids would never do. Its nice to see that these kids are proving all that wrong. I hope Ellie also proves them wrong too.

The night ended with some challenges on the Wii... lets just say I have never played the Wii before and need alot more practice

Thanks to Anna & David for having us and hosting such a fun night. Nights like these make me even more excited about the WHS conference in 2011 where we will get to meet more parents and kiddies alike.

Plastic Surgeon update

2010-11-23T12:09:00.002+11:00

This morning Ellie had a review appointment with her plastic surgeon. He was happy with how everything was looking. Ellie still has 2 holes in the roof of her mouth after her cleft repair, 1 at the back, which came undone not long after surgery and 1 at the front, where there wasnt enough tissue to cover the hole. He wanted to know if these were causing problems.

Problems?? Probably no... But discomfort yes.

As Ellie is starting to eat more textured foods, as she swallows, a fair amount is ending up coming through her nose, and sometimes getting stuck in her nose. That then leaves us with the horrible job of trying to dislodge leftovers from Ellies nose. So this is not a massive problem, Ellie just hates it when we try and get it out, and I have to admit it is a bit embarassing when you are out, and Ellie sneezes.... and yep you guessed it, this stuck food comes flying out

Ellies plastic surgeon is not to keen on repairing these 2 holes until Ellie is 3-4 years old. The reason being is he needs there to be more mouth tissue and for the tissue to be stronger. Apparently you only get 1 go at this surgery so we want to make sure it is done correctly.

With saying that, he doesnt want to see us for another year, then we will start seriously thinking about when to do the surgery to fix these 2 holes

Just some pics...

2010-11-22T20:45:00.004+11:00

An open letter to all professionals - By Pia of 'The crack & the Light

2010-11-19T06:40:00.003+11:00

Todays post is kindly borrowed from another blog called 'The crack & the light' By Pia, After I saw a beautifully written piece called 'An open letter to all professionals' on the 'Kidz' Blog

It just struck a chord with me as it rings so true. Enjoy!

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Neurology update

2010-11-16T11:56:00.003+11:00

Yesterday we had an appointment with Ellies neurologist. His first words were when he saw Ellie was, "Mel she looks well, she has grown up" He also noticed how alert Ellie was, how she was using 2 hands to explore and reach out and how much stronger she was. It just reinforced everything that we too had thought. Ellie has changed alot of the last 4-8 weeks and it was nice to hear this from someone who hadnt seen Ellie in a while.

I filled him in on how Ellie was going 'fits' wise & that since her last meds increase the fits that we were seeing 4 weks ago are no longer, however she is till having a few questionable moments every couple of days.

As Ellie is on the maximum dose of both Trileptil and Kepra, are these questionable moments enough to change Ellies meds? I dont think so and neither did Ellies neuro. Yes she still has times occasionally where here eyes roll back, or her mouth does funny things. But they both are quick and not promminent long fits. So the risk to wean her off her current meds and to try new ones brings the risk of decreased seizure control. However if we notice that over time that Ellie is having more prominenet, frequent fits then we may need to look at new meds.

We dont need to be see Ellies neuro till March/April next year... that really is a sign that things are going well. YAY!!!

Swimming... well more like a dip in the hydro pool

2010-11-14T17:20:00.004+11:00

This morning Luke and I took Ellie to the Monash Aquatic Centre - Hydrotherapy pool. At first once we got in the water Ellie wasnt so sure, but after about 10 minutes she some what enjoyed it. I wouldnt say she loved it, but I think in time she will.

Over the next few weeks Luke and I will keep taking her just to get her used to the water and moving in it. Once she is comfortable in the water, one of Ellies physiotherapists will hold a session with us in the pool showing some exercises that will help Ellie. The plan is then for us to take her a couple of times a week and about every 6 weeks, the physio will do a pool session and review what exercises she is doing.

Ellie looked unbelievably cute in her bathers, they were a 2 piece with little bottoms and a rash vest. Would you beleive we didnt remember to take a photo of her in her bathers or in the pool.... Oh well we will do that next time.

I have to admit, this morning didnt feel like therapy, or hard work on Ellies or our behalf. It felt like normal fun, normal kid like fun... which was nice!!!

I think ill like this pool thing!!

Ellie Update

2010-11-09T20:39:00.004+11:00

Ellie has been doing really well at the moment, she hasnt met any new milestones, but she is slowly creaping closer to some. Lately when she is rolling around, she is getting her bum up quite high in the air, as if she is ready to crawl. Crawling is definately a long way off, but when she is in this position, if I help her with her hands and give her some encouragement, she actually lifts her head up from the ground by pushing up on her hands... This is massive!!!

We also saw Ellies dietician last week, and she is very happy with the 3 meals a day that Ellie is eating. She still wants us to keep her on formula, as she still isnt eating massive amounts of iron rich foods such as red meat. But she wants us to start giving more savoury meals at lunch to help this.

We are still working on trying to get Ellie to drink herself. Its not that its not going well, but its not going to great either. I just want Ellie to be as independant as possible, and hopefully able to drink and feed herself.

We also bought Ellie a friend, a 4 legged friend called Coco. I am hoping they grow up to be best of friends.

We also gave Ellie a hair cut recently, not a big one. We just had to tame the mullett that was forming and tidy the top... thank god she has a hairdresser for a mum.

Our little 'poser'

2010-10-29T12:13:00.003+11:00

FIrst donation for 4P AUSSIE KIDZ

2010-10-27T12:25:00.003+11:00

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.

Lets CELEBRATE Carers

2010-10-19T12:03:00.002+11:00

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!!

Pics... Enjoy!!

2010-10-17T20:23:00.003+11:00

Ellie trying to munch on her shoes

Fun on the swing!

Fun time with Dad!

Just some updates

2010-10-15T20:18:00.003+11:00

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

Ellie is on the move!!!

2010-10-05T20:32:00.002+11:00

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!!

More just because...

2010-09-27T13:48:00.005+10:00

We have been quite clicker happy with the camera lately... but love some of the shots we have got recently. Here are some more. Enjoy!!!

This picture shows how 'wild' Ellies hair is

Oooohhh puppy dog!!

'Not so sure about these kisses Mum'

Ok, I like him now

Our beautiful smiley girl

Just Because....

2010-09-25T11:20:00.004+10:00

GO SAINTS!!!

4P AUSSIE KIDZ UPDATE

2010-09-22T19:59:00.002+10:00

Remember I posted a few weeks ago (here) about my dream of starting a charity to financialy assist WHS kiddies and their families. Well this week we received approval from Consumer Affairs Victoria for 4P AUSSIE KIDZ INC to operate as a Incorporated Association, click here to read more about what that means.

The next step is to apply for an ABN and to be a Deductible Gift Recipient (DGR) which means we are a entity or fund that can receive tax deductible gifts

We also have a graphic designer working on a logo that will be associated with 4P AUSSIE KIDZ INC, that will be on our website and all associated paperwork. Hopefully I have have this soon to show you all.

Slow and steady wins the race!!! Go 4P AUSSIE KIDZ INC

Very excited about our first WHS conference...!!!

2010-09-15T15:57:00.003+10:00

Every 2 years the Australian Wolf Hirschhorn support group hold a conference, for parents, kiddies and family members with WHS. The conference last year was held only 3 months after we had received Ellies diagnosis of WHS. Last year part of me wanted to go, but there was a massive part of me that was scared to go. I think because Ellies diagnosis was still fresh, we still were taking it all in, and learning about Ellies condition. I think if we went last year, it would have been too much, I think it was better that we dealt with the diagnosis within ourselves first before we started meeting other families.

The dates for the next conference have been announced and it will be held in Ballarat from the 11-14 November 2011. Luke and I are very much looking forward to this. We have already met 2 families of kiddies with WHS, and we are looking forward to meeting so many more.

Anna and David who have Ryley also with WHS, are orgnaising/hosting next years conference in Ballarat and have organised Dr John Carey (USA) who is one of the world experts in WHS, and he has spent the last 4o years researching the condition. He recently spoke at the National USA WHS conference and 2 years ago at the UK conference.

Very Very excited about the conference!!

Click here to read more about the Australian conference.

Ellies new standing frame - The Leckey totstander

2010-09-08T12:12:00.004+10:00

This is Ellies new standing frame. It got delivered yesterday. It is a newer model, than the one that we had borrowed, so it is slightly different, in the way that it supports Ellie. Ellies physio is coming early next week, so with her help, we will have it set up properly for Ellie...

Then ill post some photos of Ellie standing up in it...

(A BIG thank you to Charity2Charity for assisting with the purchase of Ellies standing frame)

My dream is on the way to becoming a 'REALITY'

2010-09-04T11:42:00.003+10:00

I have posted many times about my dream of wanting to start a not for profit group to raise funds to support WHS kiddies and their familys, and also to raise money to go towards research into WHS.

I have been working with a family member, (thanks Johno) to acheive this. Let me say it has not been easy. We have been totally confused by the whole process of how to set a charity up. However..... Thursday this week, there was light at the end of the tunnel.

We were put in contact with a man, who over the last 20 years has set up 50 or so charities. He has offered to help us every step of the way, till we have it set up.

What you need to know though, this is not his job. Nor does he get paid for this work, to help set up charities. He does this purely because, in his words; "He likes to help people"

WOW!! We were blown away by this man. By his generosity. By his wealth of knowledge. By his willingness to help us, Every step of the way.

So... with saying that.... where are we up to in the process?

We have completed our Application to become a Incorporated Association & we have our statement of purpose, and rules (constitution) that will allow us to apply for Deductible gift recipient status. The next step is to post it in and wait for our hopefully approval and our Certificate of Incorporation. FINGERS CROSSED!!!

The name of the group will be 4P Aussie Kidz, As Wolf Hirschhorn Syndrome is caused by a deletion of the short arm of chormosome 4 (4P)

I will keep you all updated!

Hearing test.... clear as mud

2010-08-31T12:41:00.002+10:00

Ellie had another hearing test today. These hearing tests with Ellie are proving quite difficult to do and the results for me are as clear as mud.

Let me explain....

There are 2 main tests that that they do on children. The first one is are where sounds come out of a speaker and if Ellie hears this and looks towards the window, she will get rewarded with a puppet. The second one is where the audiologist stands behind Ellie and uses different noise makers to see if Ellie turns or responds.

There are many problems with these 2 tests and Ellie...

1. Ellie does not sit still, so trying to determine if she has turned her head to the noise is quite hard

2. Ellie does not understand the concept of the puppet reward, so does not know what she needs to do

3. Ellie can sometimes remain quite blank in the face, so its hard to understand if she is responding to noise.

Today we had another hearing test, however for this one the audiologist decided to test Ellie whilst she was lying down. Unconventional, I know. But this is where Ellie was the 'stillest' and we could get a better result. She responded ever so slightly to 2 noises, by 'stilling' and eyes widening.

This is the most results we have ever had from a hearing test, however the results are still clear as mud to me. I still really have no idea how much Ellie is hearing, or worse still, is not hearing

Next week we are going to the Royal Childrens Hospital for a different type of hearing test called a 'stimlab' test. The difference with this test is that instead of boring, monotone sounds. They use more exciting sounds such as birds, dogs, bells, phone ringing, car etc. The hope with this test is that these noises gain Ellies attention better, and she can give us a clearer picture of what she can hear.

One bad thing that came out of todays appointment is that the audiologist thinks that both of Ellies grommits have come out. I really dont know how as we are so careful with not getting water in Ellies ears. I have made an appointment at 8am this Thursday morning with Ellies ENT, for him to check if the grommits have come out or not.

At this stage we are going to keep persisiting with regular hearing tests to see if Ellie can paint a clearer picture for us. I still want to get a MRI or Catscan done of Ellies ears to check if the bones have formed properly, as there is also a possibility that they may not have. Just like her eye never formed, and she also had a cleft lip/palate

Fingers crossed those grommits are still in those tiny ears of hers!!!

Ellie's PARTY PICS

2010-08-23T20:25:00.005+10:00

Ellie opening her presents

Enjoying the wrapping paper more..!

The birthday cake

The Birthday girl in her 'party outfit'

Happy Girl

In the party mood!!

Cuddles with 'pop' Rob

Giggles with Dad

Smiles with Mum

Cuddles with Uncle Dan

The party 'crew'

Enjoying the Happy Birthday 'tune'

Cutting the cake

Wow where did the 2 years go? Happy Birthday Ellie

2010-08-22T17:09:00.003+10:00

Today, 22 August at 12:50pm Elllie turned 2. Part of me thinks 'where on earth has that time gone' and the other part of me feels like Ellie has been here forever and that 2 years took ages to reach.

For me Ellies birthdays are a real celebration, to celebrate where she has come from and what she has acheived. She has acheived so much in her short life... she has been through 7 operations, she has suffered horrific seizures that are now becoming slowly under control, She has become so much stronger, she now curiously plays with toys, she eats so much better, she recognises familiar faces in her life, and challenges new people in her life with a stern stare.

However there is a small part of me that is tinged with something; wether it be sadness, curiousity as to what life could have been like, or hope... Hope that life may get easier one day for Ellie.

Dont get me wrong Ellie is the absolute light of my life. Ellie can make me smile by doing nothing. Make me laugh constantly, just by her cute smirk or her cheekiness that is slowly coming out in her personality..... But... Ellies birthdays also make me think about what life would have been like without WHS in our life.

All that aside, today was a celebration. We had a beautiful lunch with close family. Thank you Ellie for all that you have taught us, We love you, and have made me me find a different side to me that I never knew. Thank you!!!

P.s - Photos of Ellies birthday to follow

We are Ellies voice.... we speak loudly

2010-08-14T20:27:00.002+10:00

What amazes me by having a child with a disability, is the way in which you have to stand up for, advocate for and push for what your child not only requires but deserves.

Most of you may know that I have been out to the Cerebal Palsy Education Centre (CPEC) to check out the programs that they run, which is called conductive education. I was thoroughly impressed with their services and thought Ellie would benefit greatly from attending their program. However up until earlier this week the Department of Education and Early Childhood Intervention (DEEC(would not put Ellies name on the waiting list for CPEC's programs because of where we live.

Throughout end of last week and early this week, I spoke with the DEEC many times and explained in a very firm but nice manner that I would not let up until Ellies name was on that waiting list. I said I would go to a current affairs program to make them aware of what they were doing and I also contacted my local state member for parliment.

Yesterday I received a phone call from a manager at the DEEC to advise that they have now changed their rules and processes and will now accept all children to be on the waiting list for CPEC, and not just kids from a particular region of Melbourne...

WOO HOO... I was so happy!!!

This has made me realise that Luke and I are Ellies voice, we are the ones that need to stand up for what she requires and deserves and if this means that the government needs to be challenged and their processes needs to be reveiwed along the way.... so be it.!!!

EEG Update

2010-08-12T19:44:00.002+10:00

Ellie had a EEG a few weeks ago. This week we had an appointment with her neurologist, Michael. It had been 3 months since we had seen him.

So we gave him a bit of a update... that Ellie had only had 3 or 4 small noticeable seizures in the last 3 months... Which is GREAT!!!

However there has been many occasions, (at least every 2-3 days) where she does 'things'. The reason we call them things is, I dont really know how to describe them. She might twitch her nose, lips, or eyes. She might drool and stare at something. She might wake up looking like she has been hit by a bus and not slept etc etc... However when these things happen, it is short, it doesnt go for long, and she is aware the whole time. So she isnt vagueing out, which makes us really unsure if it is seizure activity or not.

He told us that her EEG still came up with some activity and abnormalities...

So... The plan is to increase Ellies dose of kepra, as this is the one that seems to have really brought Ellies seizures under more control and still keep her on Trilpetil. If in 2 weeks time we are still noticing these strange 'things' then we can increase her Kepra again.

All this aside we are very happy with where Ellie is at the moment with her seizures, considering how bad they were at the end of last year & early this year... Very happy with Ellies neurologist!

Just Because....

2010-08-08T20:43:00.002+10:00

Ellies upgrade - (to a bigger eye, that is)

2010-08-03T14:32:00.003+10:00

Ellie got her new glass eye last week that they made from a mould they took of her socket.

Its AMAZING!!!

If you compare it to the first one she had there is definately a noticeable size difference, especially at the back of her socket.

I cant beleive we have gone from 'NO ROOM' at all in her eye socket, then by using a eye socket expander and getting her first glass eye in, she now is onto her second glass eye.

Take a look at the pictures to see the difference yourself.

ELLIES FIRST GLASS EYE - DECEMBER 2009

ELLIES SECOND GLASS EYE - JULY 2010

Sorry for lack oof blog updates of late... week update

2010-07-31T09:42:00.002+10:00

Ellie is finally 100% better!! Thank goodness after 3 lots of antibiotics

This week we had 2 really important appointments for Ellie.

1 was with Aurora which is a school for hearing impaired and deaf children. They have been seeing us for a few months now at home, through their early intervention program. The reason I have them involved with Ellie is she does have a hearing impairment and we are also not sure if Ellie will be verbal, so I am keen to learn sign language too. The purpose of our meeting with them was to work out some goals for the next 6-12 months and what we want to get out of our visits with them.

The second appointment was at CPEC (The cerebal palsy education centre) They run a family centred, early intervention program which applies the principles of conductive education. It is offered to children between the ages of 1-6yo with physical and/or multiple disabilities. The programs offered address the following developmental areas: communication, physical, sensory, cognitive, social and emotional. I sat through a whole morning session which ran from 9:30 - 12:30. I have to admit I was impressed. The class I sat in had 5 children with their parents, plus 1 teacher and 5 helpers. For the parents it is a very hands on class for them, which I like as it gives me the opportunity to learn more about how to help Ellie and also the confidence to help her. In the class that I saw, they spent the first part communication with their communication books, they then did some strength building work, with some kids working on push ups, walking, getting from one position to another. They also do alot of songs, which get the kids involved.

I dont know if I have given the greatest explanation of this class, but I am still trying to completely understand it myself. All I know is that from what I saw, I think Ellie will benefit greatly from this type of therapy. I need to get Ellies name on a waiting list for this, I have been advised that she may not get in next year but possible the year after. Fingers crossed!!!

Alright thats enough for now, Ellie is at my parents for the weekend, we dropped her of yesterday morning... Going to RELAX!!!

Go away winter... cant wait for summer!!

2010-07-21T11:57:00.003+10:00

Yep I am counting the days still summer!!! Ellie is still not 100%, it is now been 4 weeks that she has been sick. The other day after another morning of coughing and vomiting, I was at my wits end....

Decided to ring my peadiatrician, however he was on holidays.... another Pead at the Royal Childrens Hospital spoke to me, and I filled him in on the last 4 weeks and what had been going on with Ellie, such as the chesty cough, a wheeze here and there, lots and lots of coughing and in turn heaps of vomiting. Amongst all of this Ellie has also had 3 courses of antibiotics over the last 4-6 weeks. He offered to see Ellie last night at 7pm at The RCH. Not an ideal time... but we took what we were given.

He assessed her, he doesnt think it is asthma, he doesnt think it is bronchilitis, nor does he believe she is aspirating her milk/food. He couldnt really give us a clear answer as to what is causing this. However after a very thorough checkout, a suction of the nose to get mucus, and having blood taken we were sent home with some new antibiotics for Ellie. He will be checking again for whooping cough and another virus, (I think it started with 'P') Results will be back end of this week/early next week.

I am hoping these antibiotics do the trick, and that nothing nasty comes up from the other tests.

On a more positive note, Ellie is doing really well with her sitting at the moment. She still needs to be set up in the right postion by us, but she is maintaining the sitting position much longer. A few weeks ago you would sit Ellie down and she would just throw herself back, and wouldnt have a bar or sitting. However Ellies physio Trish gave me a great idea. Ellie loves vibrating toys, and she has what is called a vibrating snake. I have been wraping this around Ellies body as she sits and she holds onto it while it vibrates, this has given her a bit more motivation to sit for longer..... Yay!!

We are also off to Ellies ocularist this afternoon, he is a lovely french man who makes Ellies glass eye. If you remember Ellie was in hospital a few weeks or so ago and they took in impression of her eye socket. With this Patrick will make a new glass eye. We are really hopefull that it is somewhat bigger than the last, even if only by a few millimeters. Watch this space for photos!!

What is normal?

2010-07-14T12:05:00.003+10:00

I hate the word 'normal'

I hate the word 'normal development'

I know parents with 'neurotypical children' (this is the PC way of saying 'normal child') like to know if there babies or children are normal, and if they are developing in the normal pattern. But what is actually normal and who decides what is?

I know Ellie doesnt fit into the normal development category, and according to society in relation to her development is not a 'perfectly normal child'.

These thoughts dont creep into my mind too often.

If we are at home alone, or we are out with friends and not too many kids, these thoughts dont enter my mind really at all....

Its when there are more kids around, and I see what they can do, and how they do it with such ease. Its when babies or children younger then Ellie pass her in their development.

I know this is something that is going to continue happening for the rest of Ellies life. I know I said I HATE the word 'normal'

But.... how sometimes, oh just sometimes I wish Ellie was normal

Winter means cold weather... which means bad times for Ellie

2010-07-06T20:08:00.002+10:00

Ellie unfortunately is still sick.. Which suprised me as yesterday she really looked like she was turning a corner. That was until 4am this morning.... when we heard Ellie struggling to catch her breath on the monitor and it sounded like she was going to cough a lung up. (pardon the pun)

She didnt get much sleep between 4am-7:30am as she was just coughing way too much. After breakfast and milk it was time for Ellies sleep, however, as the coughing seemed to continue, Ellie couldnt control it and vomitted violently about 4 times.

Right... back to the doctors for 4th time in 1 1/2 weeks. The doctor put Ellie on a oxygen/asthma pump to see if this loosened up her chest or stop the wheezing. It didnt..... so she sent us off for a chest x-ray to rull out pneumonia. Thank goodness the chest x-ray came back all clear.

As this came back clear the doctor took a swab to check for whooping cough, it will take a couple of days to get the results back. At this stage the doc thinks it is either prolonged bronchilitis or whooping cough.

She is now on another course of antibiotics... Hoping the kick this bug!!

More Physio...

2010-07-05T19:28:00.002+10:00

Today Ellie had her first private therapy session... It was fun. It was mostly spent with the physio getting to know Ellie and where she is at developmentally, and what we have been working on with Trish, our physio that comes to the house. Ellie really seemed to enjoy it, however she did spend most of the session, moving, wriggling and laughing... Penny the physio said that Ellie had 'cheek' and 'spark'

This made me smile!!!

My plan is to see the private physiotherapist once every 3-4 weeks and the same with Trish, who comes to the house. This wasy Ellie gets 2 therapy sessions in a month, plus we do Gymbaroo once a week.

Tomorrow we have an appointment regarding Ellies orthotics, they are still a month or so off. But looking forward to getting them as well as Ellies new standing frame!!

Ellies new hearing aids

2010-06-30T12:27:00.002+10:00

Ellie got her new hearing aids this week, and I have to admit... I am impressed... They are little, the are not intrusive, they dont stand out... and they are pale pink!!!

These hearing aids stay on alot better then the last one we had, which was a bone conductor. They are quite easy to put on (although Ellie doesnt like the process of getting them on) however once they are on, they dont bother her at all. I havent noticed a drastic difference, so time will tell. They are going to follow up with quite a few hearing tests with the hearing aids on, to make sure they are set up correctly and working properly, so this can take time.

Ellie is still a little bit unwell, Doc says slight bronchilitis, and possibly asthma, as Ellie tends to get bronchilitis alot in winter. As the weather is not being kind at the moment, and is absolutely freezing, Ellie and I are spending alot of time indoors this week, and only venturing out if we have too... I am hoping that this together with the meds, she will be better soon.

Here are some pic's of Ellies hearing aids.

SICK Again....

2010-06-27T11:49:00.003+10:00

Ellie is sick again... nothing major... Just a really bad cough.cold, that when she coughs too much she vomits. I really cant wait for winter to be over, as Ellie seems to struggle this time of year... They doctor hasnt put her on antibiotics as she only finished a course 2 weeks ago, when she had the same thing. She is having a dose of steroid cough mixture, once a day for 3 days, and if she isnt better by tomorrow I have to bring her back and they may prescribe some antibiotics.

Another problem at the moment is that Ellie is doing 'strange' things, I know this sounds very broad, but it is. She does a clicking thing with her mouth, some funny 'o' shape with her mouth, and head and lip trembling. When she is doing these, it is quite repetitive. We dont know if it is seizure activity or seizure related. I spoke to Ellies neuro a few days ago, and he said before we put up her meds, he would rather do another EEG and see if we can catch Ellie doing these 'strange' things. This hopefully gives us a clearer picture of what is going on. My thoughts are that there is some sort of seizure activity going as when she has been doing the lip and head trembling, she has been quite vague... a sign of seizures with Ellie. Hopefully the EEG happens this week

Aside from this we are all good, and Ellie suprisingly still has her sense of happiness and humour, even though she is feeling a bit ordinary...

LOVE this girl to bits!!!

Ideas, Visions, our Dream....

2010-06-23T09:42:00.003+10:00

I have mentioned before on my blog that I have a 'dream'. That is to start a charity/foundation that will provide some sort of financial support for WHS kiddies around Australia, for things such as standing frames, walkers, operations, etc & also raise money to go towards more research into Wolf Hirschhorn Syndrome.

This is a massive dream, I know, and many people have told me that to set up a charity that the ATO recognise as a charity is HARD. This I also know... But this is something I really want to do.

I have a vision that the foundation would have an annual gala golf day/dinner... The dinner would be at a beautifull golf course. We would have silent auctions, live auctions, a fantastic MC, and of course entertainment.. I also envisage that we would do smaller things throughout the year such as sausage sizzles at bunnings whilst handing out flyers about WHS to provide more awareness.... Attending markets, painting kiddies faces, again providing pamphlets to raise awareness... the list is endless and it goes on forever.....

Yesterday my cousins husband came over to sit down and nut out how to get this dream rolling, and ideas for the future... this got me excited!!! (THANKS JOHNO)

I now have some homework to do... such as -

- Think of a charity name.

- Register this name

- Find out what a 'trust deed' is and if we need one (I think we do)

- Possibly find a lawyer who specialises in trust deeds and setting up charitys

Hmmmmm.... I am still trying to get my head around all of this, but it will be a learning process...

Watch this space!!!

Just because....

2010-06-19T12:04:00.003+10:00

Cheeky Girl

A quick catch up with Aunty Sandra from interstate

Ellies new winter hat

Love love love this photo

Chillin'

Trying very hard to pull herself up

Getting stronger

Great hair shot

Practicing our standing

Torn...

2010-06-11T15:55:00.002+10:00

I am torn at the moment. Currently Ellie receives physio and OT through a

Early Internvention (EI) program. Both Ellies therapists are fantastic & they come every 3 weeks. This session usually lasts 45mins - 1 hour. Its quite a intense session, to see where Ellie is at, give me some new exercises to do with Ellie, and then practice these. This gives me the confidence to do the exercises at home, which I do, most days.

However... lately I have been thinking... Is this enough? Can I do more with Ellie? I have been thinking about doing private therapy sessions on the weeks where the EI therapists dont come to our house.

Last night I went to a information night about 'What is Early Intervention' 'Why is EI important' 'What therapies form EI'. Leaving this seminar I thought ' Yes' I am going to start doing private therapy with Ellie. Yes I know it comes at a financial cost, but I learnt that the critical time period of learning is 2-5yo, and that the highest rate of learning is from birth - 3yo.

It was also mentioned that best practice indicates that children need approximately 2o hours per week of early intervention.... This shocked me... this is 3 hours a day.

However, on the other side of the fence is the views that, even if I do private therapy with Ellie, this still only forms a small part of her therapy routine. That the most part and the important part is what is done at home.

Yes... I agree with both of these sides... but why do I feel a nagging feeling at the moment that I am not doing enough. That I could be doing more..

Maybe this is because Ellie is 2 in a few months, and I thought she would be doing more now.

Maybe its because that with special needs kids the devleopment takes alot longer, and that I find hard.

Right now I am in the frame of mind, "What do we have to loose"

Love to hear some other thoughts from Mums

Catch up with other WHS Parents

2010-06-08T18:29:00.003+10:00

Today Ellie and I had a great day catching up with friends. Friends who are also parents to WHS kiddos. I caught up with Anna & David who have Ryley who has WHS and they also have Braeden.

Then their is Liv, who has Elliott. Its so nice to share stories about whats worked with our kids, what they go through, what they are acheiving, seizures, etc... Its also really nice to see what the kids can do. As Ryley and Elliott are quite a bit older than Ellie, its a real positive to see what she may acheive...

With other WHS parents their is a real understanding, that they know exactly what you are going through... and this is, well... Nice!!

Ellie keeling a close eye on Ryley

Just because....

2010-06-07T07:50:00.004+10:00

Ellie using her standing frame

Practising sitting

Looking pretty

Check out that 'hair'

More sitting

Dietician happy with Ellies diet

2010-06-03T21:04:00.004+10:00

"I am happy with how she is going" ... Never thought I would hear those words about Ellies eating habbits.

Yes... she still eats small amounts

Yes... she still eats pureed food

No... she never shows excitment for food

However... she is having 3 small meals a day, and 3 bottles. She is starting to tolerate and somewhat enjoy meal times. Our dietician thought this was huge progress. Plus Ellie is starting her dinners with small amounts of savoury dishes, such as potato bake, bolognaise, risotto, vegies, caseroles etc... This is huge improvement from not so long ago where all she would eat was custard.

So... her tips for me, was to try and introduce more meat into Ellies diet at dinner time. So until her meat intake increases, Ellie will stay on the formula as this is giving her everything she needs, plus iron.

Ellies weight is still hovering about 6.9kgs, as for most of the last week she has been vomiting on and off... she isnt sick. Just vomitting... This has now stopped, so finger crossed we can break the 7kg barrier again

There is a BIG bee in my bonnet!!!

2010-05-28T10:59:00.002+10:00

Through Ellie, I have made some wonderful contacts and friends of other parents of kids with additional needs or disabilites. Its nice to hear what they do, what works for them with their kids, what therapys they do, problems they have gone through and what they did to fix it.... These parents are a huge resource of information.....

However, over time there also seems to be a common theme to the negative points that I hear... here are some of them:

- When applying for funding of any sort, you need to give the worst case scenario for your child, even exagerate if need be.

- Private therapy, toys, equipment is ridiculously expensive.

- Funding is not always given, even when the child has a obvious disability and learning dificulties.

I now have some questions...

1. When you have a disabled child. That is hard enough... why should you have to EXAGERATE on their condition. Why should you have to beg for funding??

2. Why oh why is private therapy, toys and equipement so expensive (with minimal government and health insurance funding) Does the government not realise that most parents of a disabled child counted on going back to work at some stage after their child was born... but now spend ALL their time caring for their child. Taking their child to appointments, taking their child to therapy, so that they can be the BEST that they can be. So for some work or making an income is not an option... why should you have to choose between suporting your child or contributing towards the income of your family, so your child can have what they need.

3. Why and this is a big WHY.... when a child who clearly has additional needs and delayed development gets knocked back for ANY funding for schooling or aids....

This 3rd WHY has come from reading a friends blog. (Violet's Journey) Sarah's daugher has Hydrocephalus, Microphthalmia (which is like Ellies eye condition, however it means small eye) These are only a couple of the conditions & problems that Violet has to deal with. Sarah has been going though a long process to get Violet funding to assist with Violets schooling & to get a aid etc. This involved putting Violet through 5 psych assessments.

The results of these assesments showed that Violets overall IQ was on the 3rd percentile, and the report stated that , "The combined results of the assessment are consistent with and suggestive of a mild intellectual disability." And Sarah was advised that based on these results Violet would not be eligible for any funding..

WHY WHY WHY and HOW Does this happen.. should not all children with disabilities be entitled to support and funding, regardless if they are classified as a mild or severe disability.

Why oh Why are parents of disabled children, constantly having to fight for their children??

These parents will fight and will NEVER give up, but It shouldnt have to be that way.

*phew* that feels better!!

(please take the time to check out Sarah's blog about her gorgeous daughter Violet at

Violets Journey)

Update on Ellies hearing

2010-05-26T15:19:00.003+10:00

A few weeks ago I posted about another hearing test that Ellie had done, to check her hearingafter the grommits were inserted. The ABR still showed that Ellie had a mild -moderatehearing loss. For over 1 year now Ellie has been using a bone conductor hearing aid. This is inserted into a head band.

Yes... I see more of a response when she wears this, but.... its not the easiest thing to use. As it is in a head band on her head, if she rolls or moves, it can come move around the wrong way or come off....

Today we had an appointment with Australian Hearing and the paediatric audiologist asked what I thought of the bone conductor hearing aid, and how often Ellie wore it. To be honest, she wears it for about 1-2 hours a day. Which I dont think is enough, but as I said if she is rolling around on the floor it doesnt work properly.

The audiologist suggested that we get some small hearing aids fitted for Ellie. She suggested the Phonak Nios Micro III . These sit behind Ellies ears. They are quite small, and are fitted to Ellies ears, so they should stay in alot better than the bone conductor one. We also get to choose what colour we want. (of course we have chosen pale pink)

I am excited about this, as Ellie does respond more with the hearing aid on, and this is only going to help her in the long run if she can wear hearing aids for a larger part of the day.

So today they took a earmould impression, and we go back on the 21 June for Ellie to be fitted. They will also follow up with 2 hearing tests middle and end of July, & then probably look at seeing Ellie every 2-3 months to assess her hearing, the hearind aids, and ensure they are working in the correct manner.

Neurology Update

2010-05-24T12:08:00.002+10:00

Today we caught up with Ellies neuorologist. He was very happy with how Ellie is going, as are Luke and I

She is alert, active and responsive & She has been TOTALLY seizure free since our last appointment (about 8 weeks ago) No absent seizures, no blank moments... NOTHING!!

Currently Ellie is on 2 medications to control her seizures. Ideally I would rather Ellie on less medicine than more. But with saying that, IF she had to be on multiple meds to obtain seizure control, then I would be happy with that.

So our plan is to SLOWLY try and reduce her Trileptil dose and increase her dose of Kepra, with the aim to end up just on kepra. I feel comfortable with this, because I know if there is any breakthrough seizuers we have back up meds to give..... & we can always go back to being on 2 meds... if that is what is required.

We have pushed our next neuro app out till 3 months away.... This is a good thing. This shows how well Ellie is travelling, considering at one stage we were going every 2 weeks...

Lets hope this good run continues!!

Just a few important words... plus some pics

2010-05-20T07:48:00.001+10:00

Not much will be said in todays post... except that Ellie had her regular weigh in yesterday, and I could not believe it, she was over 7kg, she was 7.105kg to be exact. Considering Ellie was sick last week and vomiting... I was impressed!!!

Ellie exploring her electric toothbrush... she loves the vibration

This girls hair is out of control....

Our beautiful girl