tag:blogger.com,1999:blog-24608568330263592152024-03-05T19:16:58.385+11:00Ellie's StoryEllie has a rare genetic syndrome called Wolf-Hirschhorn syndrome. This is the result of a genetic error on chromosome 4. It is estimated to occur in 1 in 50,000 births. Ellie also has right eye anophthalmia, which means she was born without her right eye. Ellies life has its ups and downs, but she continually amazes us and makes us smile. This is her storyAnonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.comBlogger192125tag:blogger.com,1999:blog-2460856833026359215.post-36903057749829340912013-12-29T21:26:00.000+11:002013-12-30T08:54:11.712+11:00"Oh the places you will go"… A reflection of the past and excited about the futureAs 2013 comes to an end, and we look forward to Ellie starting school in 2014, it has made me reflect on the last 5 years.<br />
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I still cannot believe that Ellie is going to be a school kid, a little prep kid.<br />
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Its not that I ever doubted her, or that I thought it wouldn't happen…<br />
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Its just that when you look back at the first few years of Ellies life, we had a lot of downs compared to ups… & when we had those downs it was very hard to look into the future, to imagine what Ellie would do, to imagine what she would become, and to imagine what she would achieve.<br />
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Upon reflecting back on Ellies 5 years, I went back to old photos, and put this video together. This shows how far our little fragile baby has come.<br />
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She has become a strong, determined, resilient, beautiful, young girl… I am very excited to see what 2014 brings for Ellie and for Ellie to show us all that she can achieve.<br />
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Enjoy the video, it is a long one, as I had to many favourite photos.<br />
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<b><span style="color: purple; font-size: large;">Your off to great places, Today is your day!</span></b><br />
<b><span style="color: purple; font-size: large;">Your mountain is waiting, So… Get on your way</span></b><br />
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Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com2tag:blogger.com,1999:blog-2460856833026359215.post-28416061909801690062013-08-26T12:58:00.002+10:002013-08-26T13:14:43.072+10:005.. How did we get here??<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5pUB95m_XsBO8pNgcid6r_136ZiF98dmqQaawGoZ5MlRK2RNPH5-I_cVuFfJAJfvFIy7M9DAxxEB2MrxMdHuhmhKGVBfd_RFdnohkcUdNcbrxABQYQDjGxRCZGyxLHKR_M8aYaYYCe5om/s1600/IMG_4304.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5pUB95m_XsBO8pNgcid6r_136ZiF98dmqQaawGoZ5MlRK2RNPH5-I_cVuFfJAJfvFIy7M9DAxxEB2MrxMdHuhmhKGVBfd_RFdnohkcUdNcbrxABQYQDjGxRCZGyxLHKR_M8aYaYYCe5om/s320/IMG_4304.jpg" width="262" /></a></div>
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There are times that I feel like Ellie has been here forever and I cant remember my life before her.<br />
Times when I think back and realise how far she has come.<br />
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Then there are times when I feel like it was only yesterday that Ellie came into our lives.... and I can still feel those raw emotions of fear and joy.<br />
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Fear of what was to come?<br />
Fear of what Ellie's life would be like?<br />
Fear of what our life as a family would be like and how our life would change?<br />
Fear of the unknown?<br />
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Joy at the arrival of our precious little girl.<br />
Joy at our family of 2 becoming a family of 3.<br />
Joy at this little thing that was going to amaze me..!!!<br />
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These are days like August 22. Ellie's birthday. This year she turned 5.<br />
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5..!!! Where did that come from??? What I have a 5 year old.<br />
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Over the last 5 years, there are still occasions where I go back to those fears I had when Ellie was born. There will always be some sort of fear of the unknown with Ellie. That just comes with having a child who has a disability.<br />
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However that is only short lived. When I look at our girl, and she reminds me that she is a strong, determined, resilient and funny girl, that has so much love to give.<br />
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It amazes me that we are here at 5, planning school next year for Ellie.<br />
It makes me beam with pride how well she has fitted into kinder, and melts my hear that she has made her own kinder friends.<br />
It makes me SMILE and helps subsides those fears...!!<br />
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Happy Birthday to my beautiful Ellie. You bring us so much joy...!!!Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com2tag:blogger.com,1999:blog-2460856833026359215.post-85624455482834883642012-09-26T16:45:00.000+10:002012-09-26T16:45:05.358+10:00Bitter Sweet<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Bittersweet. Meaning: Producing or expressing a mixture of pain and pleasure</span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">The word 'bittersweet' has been going around and around in my head for a few weeks now. I think sometimes having a child with a disability forces you, wether you like it or not, into a world that is 'bittersweet'</span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">I think I have always been in this 'Bittersweet' world. However having Cooper has made me realise this. </span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">There are times with Ellie, when things are really hard... Like when she is not herself and you don't know why, because she cant verbalise it to you. Or like when you see her really wanting to do something like walk, and she is giving it her all, but she just doesn't have the balance or strength yet... the look in her eyes shows she really wants to do it. </span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Its also pulls at the heart strings watching how at ease Cooper is with drinking out of a bottle, holding his head up high, and holding onto rattle when it is given to him.. Things that Ellie really struggled to do. </span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">These times are bitter because it really smacks you in the face how hard having a child with a disability is. </span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Then there are the 'Sweet' Times, like when they learn a new skill, it could be as basic as holding onto a toy, responding to their name, or even waving... then there are the bigger milestones.. sitting, self Independence such as eating and drinking, crawling, standing, the list goes on.. Not all kids with a disability reach all these milestones. </span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">But believe me when they reach a milestone. No matter how big or small, the feeling is so unbelievably sweet, that for that moment in time you forget about the 'Bitter' times</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">and you SMILE</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">These 2 make me smile...!!</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com3tag:blogger.com,1999:blog-2460856833026359215.post-81330052904366890512012-06-29T16:12:00.001+10:002012-06-29T17:16:11.800+10:00And then there were 4...!!<div class="separator" style="clear: both; text-align: center;">
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<span lang="EN-US" style="font-family: 'Trebuchet MS', sans-serif;">2 weeks ago we became a family of 4. On June 15, 2012
we welcomed Cooper Ryan Young into the world. He is an absolute dream. He was
3.27kgs (7.21 lbs) and 49.8cm long. He was born with very very cool dark spiky hair.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: 'Trebuchet MS', sans-serif;">Ellie is extremely curious and intrigued by him. She
is definitely aware that there is another 'person' in the house. She is
actually quite gentle with him, and it is quite beautiful to watch her take all of this in and process this big change. With Cooopers arrival, Ellie has grown up over night.. she looks so much oler now. She is a BIG sister..!!!<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: 'Trebuchet MS', sans-serif;">Life is definitely busier with another little person
in the house..!! I am feeling quite rested as he is a really good sleeper at
this stage (touch wood..!!)<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: 'Trebuchet MS', sans-serif;">Here are some pics of our little man. LOVE him to bits
xx</span><br />
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<span lang="EN-US" style="font-family: Times-Roman;"><br /></span></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com7tag:blogger.com,1999:blog-2460856833026359215.post-40531363087464571582012-05-12T16:10:00.001+10:002012-05-12T16:16:12.801+10:00Close to home...In the last week or so I have seen a video doing the rounds on facebook. I finally got around to watching it, and it touched me. It hit so close to home. It brought back memories, feelings, and fears I had when Ellie was born and we were told she was born without her right eye.<br />
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It made me remember the stares, points and even comments about Ellie from complete strangers when we were out and about. Those early days were hard..!! Hearing people say horrible things about my daughter, watching people stare. I even had people ask me "Whats wrong with your daughter"<br />
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Yes it upset me, but I thought "How dare you..!! a complete stranger make me feel uncomfortable about my daughter"<br />
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<b>What did I do? How did I deal with it?</b><br />
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I would stare back at them..!! Till I made them cringe and look away, and hopefully I made them feel awkward...<br />
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I would approach them, and let them know that I heard there horrible comments about my daughter and that it was mean and rude...<br />
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I even had business cards made up with Ellie's photo, and it said "My name is Ellie Eda Young and I have Wolf Hirschhorn Syndrome" And the web address for the blog, in a hope that people would go home and look up WHS or Ellie's blog, and be educated about her and her condition.<br />
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What on earth makes complete strangers feel the need to voice there horrible thoughts about people with disabilities?<br />
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Is it really necessary to point, laugh and ridicule these people?<br />
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I know it is human nature to look at things that are different. People that are different... I do this too.. But there is a difference in looking to staring... and then also making comments loud enough for these people and their parents or carers to hear.<br />
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Take the time to watch this video. This beautiful little boy, was born without both his eyes. His parents endured the looks, the comments and were even asked, why they didn't abort their baby...!<br />
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In this video I see her excitement at finding out she is pregnant...<br />
I see her fear as they realise half way through the pregnancy, there is problems with their baby...<br />
I see her sadness as she talks about how strangers treat her and her baby boy...<br />
I see her joy in her face as she talks about her beautiful boy...<br />
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I see everything that we have been though.<br />
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<a href="http://www.youtube.com/watch?v=oWCbkyR0cy0">www.youtube.com/watch?v=oWCbkyR0cy0</a><br />
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<br />Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com2tag:blogger.com,1999:blog-2460856833026359215.post-91402161143139546922012-04-30T14:07:00.002+10:002012-04-30T14:21:00.668+10:00Reflections. How far we have come..!!Recently I have been sorting through Ellies things, moving furniture, buying baby things... all to get ready for our new addition which is due in 8 weeks.. A few days ago I was taking Ellies clothes out of her draws, as these were going to go in the baby's room. Going through her socks I came across a tiny box, which had Ellies first socks that she wore and her hospital bracelet from when she was born.<br />
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These 2 items gave me a real reality check on how far we have come, or should I say, Ellie has come from when she was born. The socks were actually Baby Bjorn doll socks and her hospital bracelet was not much bigger than a 5 cent coin.<br />
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It made me think back to that day over 3 years ago, when when Ellie was born. Nothing could have prepared us for that day. We had a baby born at 1.8kgs (under 4lbs) who was to small for 000000 clothes, premmie nappies went half way up her back, and we were also shocked to find out that she was also born with one eye. If I look back at photos I remember that time clearly, but there is also allot that I don't remember due to the shock of the situation....<br />
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However fast forward 3 years, and we now have a beautiful, cheeky, funny little girl.. Who wears size 1 clothes, is moving around on her bottom, is very switched on, loves life... and continues to amaze us.<br />
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How far we have come...!!<br />
And how much we have learnt... Not only about Ellie but also about ourselves.<br />
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<b>(The sock on the right is Ellies current sock size..!!)</b></div>
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<b>To This...!!! </b></div>
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<br />Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com4tag:blogger.com,1999:blog-2460856833026359215.post-7273762076741673782012-04-17T13:48:00.003+10:002012-04-17T13:54:04.614+10:00Amazons response to my complaint<span class="Apple-style-span" style="font-size:180%;">If you read my previous blog update you would be aware that I emailed a complaint to Amazon.com regarding a book with an offensive title for sale on their online store </span><div><span class="Apple-style-span" style="font-size:180%;"><br /></span></div><div><a href="http://ellieedayoung.blogspot.com.au/2012/04/boycott-amazoncom.html"><span class="Apple-style-span" style="font-size:180%;">(Read that blog post here)</span></a></div><div><span class="Apple-style-span" style="font-size:180%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:180%;">I did ask for a response. Read this below. Now.. I did expect that I would get a generic <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">response</span>. However I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">did</span> not expect to get a generic response that <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">didn't</span> even answer my enquiry or acknowledge my complaint.. I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">don't</span> know what has infuriated me more... the book that is for sale, or the lack of <span class="blsp-spelling-error" id="SPELLING_ERROR_4">proactivness</span> to my complaint... I feel a reply email coming on.</span></div><div><span class="Apple-style-span" style="font-size:180%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:180%;">Watch this space..!!</span></div><div><br /></div><div style="text-align: center;"><span class="Apple-style-span" style="font-size:180%;">_________________________________</span></div><div><br /></div><div><span class="Apple-style-span" style=" ;font-family:Arial, Helvetica, sans-serif;"><blockquote type="cite" style="display: block; margin-top: 1em; margin-right: 1em; margin-bottom: 1em; margin-left: 1em; "><div><span class="Apple-style-span" style="font-size:180%;color:#ff0000;">Hello,<br /><br />The items you referenced are not available for sale. Thank you for contacting us.<br /><br />Thank you for your inquiry. Did I solve your problem?<br /><br />If yes, please click here:<br /><a rel="nofollow" target="_blank" href="http://www.amazon.com/gp/help/survey?p=A1A18G8TBLK8BA&k=hy" style="text-decoration: underline; outline-width: 0px; outline-style: initial; outline-color: initial; ">http://www.amazon.com/gp/help/survey?p=A1A18G8TBLK8BA&k=<span class="blsp-spelling-error" id="SPELLING_ERROR_5">hy</span></a><br /><br />If no, please click here:<br /><a rel="nofollow" target="_blank" href="http://www.amazon.com/gp/help/survey?p=A1A18G8TBLK8BA&k=hn" style="text-decoration: underline; outline-width: 0px; outline-style: initial; outline-color: initial; ">http://www.amazon.com/gp/help/survey?p=A1A18G8TBLK8BA&k=<span class="blsp-spelling-error" id="SPELLING_ERROR_6">hn</span></a><br /><br /><br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_7">Jagadish</span> S</span><br /></div></blockquote></span></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com3tag:blogger.com,1999:blog-2460856833026359215.post-32476737608996330522012-04-16T15:59:00.002+10:002012-04-16T16:05:06.287+10:00Boycott Amazon.com<span class="Apple-style-span" style="font-size:130%;">This afternoon, a friend of a child with a disability put something on <span class="blsp-spelling-error" id="SPELLING_ERROR_0">FB</span> that caught my eye. It was from a very, supposedly, reputable online store. </span><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;">They were selling a book titled: <b>Duh... - 101 Reasons You Might Be a Retard</b></span></div><div><b><span class="Apple-style-span" style="font-size:130%;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size:130%;">LOST FOR WORDS...!!!</span></b></div><div><b><span class="Apple-style-span" style="font-size:130%;"><br /></span></b></div><div><span class="Apple-style-span" style="font-size:130%;">Needless to say I have sent them a complaint email... have a read of my email below.</span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-size:130%;">________________________</span></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><div><span class="Apple-style-span" style="font-size:130%;"><span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">Appalled</span>, shocked, outraged, offended.... this <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">doesn't</span> even begin to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">describe</span> what I felt when I saw a book for sale on your website, called: Duh... - 101 Reasons You Might Be a Retard</span></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;">I am the mother of a 3.5 year old disabled girl. She has physical and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">intellectual</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">disability's</span>. For someone to say that my daughter is disabled, is not offensive. This is true, this is a fact. For someone to call her a retard or retarded is unbelievably offensive. </span></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;">On your website in the book description it states, the following: </span></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;"><i>Is it genetic or influenced by environment? The answer really doesn't matter, but what does matter is being able to identify a retard.</i></span></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;"><span class="blsp-spelling-error" id="SPELLING_ERROR_6">WTF</span>?? Are you serious? This book is making an absolute mockery and joke of people with disabilities and those who care for them. To use such a word and to create and actually sell a book with this title in this day and age is truly offensive. People with <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">disability's</span> are human. They deserve respect, and dignity as do all humans.</span></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;">This book needs to be removed from your site, and needs a world wide ban on it. The author, well... lets just say, what I would like to say about him, probably <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">shouldn't</span> be printed... but <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">I'm</span> sure you get my drift.</span></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;">One last word, I noticed that the book is only for sale for $0.99c. Is Amazon.com that desperate for a F***<span class="blsp-spelling-error" id="SPELLING_ERROR_10">ing</span> $$$ That they need to resort to selling such obscene, offensive crap.</span></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;">I would love to see a reply to my complaint...</span></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;">From one very outraged mother of an absolutely beautiful disabled girl</span></div></div><div><span class="Apple-style-span" style="font-size:130%;"><br /></span></div><div><span class="Apple-style-span" style="font-size:130%;">(Watch this space)</span></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com5tag:blogger.com,1999:blog-2460856833026359215.post-20866117044126639112012-04-01T13:00:00.003+10:002012-06-29T16:14:54.078+10:00Eye surgery update<div style="text-align: left;">
Its been just over 1 week since Ellie's eye surgery, where she had a Hydrophilic orbital implant inserted into her right eye socket. The surgery went well. We were in at the hospital at 7am and back home by lunch time. Ellie woke up pretty upset and agitated from the anaesthetic. This is something that is happening more with anaesthetics as she gets older.</div>
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I spoke to her eye su<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">rgeon about putting Ellie on antibiotics for the next 4 weeks whilst the expander is in, as last time Ellie had this procedure, her eye socket got so badly infected. He wasn't keen on putting her on AB's for such a long time. So the p</span>lan was to review Ellie 1 week after surgery to see how she was going, and then talk about putting her on AB's for the last of the 4 weeks.</div>
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We saw her surgeon last Wednesday and I had concerns over how red, inflamed and basically angry her eye looked. He agreed, so Ellie was put on AB's straight away to stop any infection or stop it getting worse. We go back to see him this week, to see if there is any improvement.</div>
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I have to admit I was shocked at the size of the implant. It is definitely allot bigger than last time, and its still going to expand over the next 3 weeks, until it is taken out.</div>
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<span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; color: #0000ee;"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5726264847729606370" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-lK0xu4t0wpw439WgrB28-FfY3bU6Pg0MO_v8OstZA18V-et3ZOZVoVjHLG-Gl1l9Wpp9XUB-RwY2JQKuUy1hzoJFAngJt8SeByQJS-G9wU1rmbjZ-z0AXjeQvVObOQ2Yt0YsUTbvTWrs/s320/IMG_1533.JPG" style="cursor: pointer; display: block; height: 320px; margin-bottom: 10px; margin-left: auto; margin-right: auto; margin-top: 0px; text-align: center; width: 238px;" /></span></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com3tag:blogger.com,1999:blog-2460856833026359215.post-67830953647152743562012-03-21T17:02:00.003+11:002012-03-21T17:19:58.125+11:00Another eye surgery.Ellie is booked in for another eye surgery tomorrow. <div><br /></div><div>She will be having a <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Hyrdrophilic</span> Orbital Expander put into her right eye socket. These <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">expander's</span> are placed in the socket in their dry, contracted states and expand to their full size (which is generally a 10 fold increase in volume) when it absorbs the surrounding tissue fluid. The expander will be in for 4 weeks. </div><div><br /></div><div>The idea of this expander is for it to stretch out the front part of <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">Ellie's</span> eye socket and also try and create more eye lid, which in turn will mean that we can fit a larger prosthetic eye in.</div><div><br /></div><div>Ellie has had this procedure before and it was very effective. However in the 3rd week of having the expander in, her eye socket got infected quite badly, which caused her to have an increase in seizures, and she was hospitalized for the last week and put on IV antibiotics.</div><div><br /></div><div>I am going to chat to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">Ellie's</span> surgeon tomorrow morning, and ask his thoughts about putting Ellie on antibiotics for the duration of having the expander in, basically to act as a preventative against another eye infection.</div><div><br /></div><div>It will be an early start tomorrow morning, we have to be in the city at 7:15</div><div><br /></div><div>Early night for me tonight...!!</div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com5tag:blogger.com,1999:blog-2460856833026359215.post-64427809317413594462012-03-15T16:54:00.005+11:002012-03-15T18:23:34.934+11:00She continues to amaze us...<b>Clever Girl</b><div>Lately Ellie has been understanding so much more of what we say and do... For example when we get her breakfast, lunch or dinner ready, in the microwave, she knows that it is her food and sits very excitedly in the kitchen.. we will then call her over to her seat and table and she scoots on over..<div><br /></div><div>Ellie has also been able to clap for some time, which is an achievement that we were very happy with, but now Ellie has started to do it on command, as she does with wave hands and kick legs...</div><div><br /></div><div>This just shows that she is definitely understanding what we say to her... Clever little girl</div><div><br /></div><div>Check out the video below.</div><div><br /></div><div><b>Neuro Update</b></div><div>A few weeks ago, Ellie had a routine hip x-ray. The hip x-ray results came back fine. But they also managed to get the bottom part of her spine in the x-ray and this showed up some abnormalities. Ellie's neurologist, like Luke and I have always assumed that Ellie's not walking yet was due to her having WHS, low muscle tone, delayed development etc...However thought it would be a good idea to look into the abnormalities further. He organised an MRI to get a better look at her spine, and also referred us onto a neurosurgeon to discuss the results.</div><div><br /></div><div>We met with the neuro surgeon today. Basically my understanding is that Ellie's spinal cord is a little bit longer than it should be and it is also slightly tight... Could this be a factor behind why Ellie is not walking yet?? Could surgery to loosen up her spinal cord assist??? Or is Ellie not walking yet, due to the bigger picture of WHS and its symptoms??</div><div><br /></div><div>Who knows?? As the neurosurgeon said.. if we had a crystal ball...!!!!</div><div><br /></div><div>He explained that the issue with Ellie's spine is quite mild. He isn't even sure that if we did do surgery to loosen up her spine that it would be a factor in her walking... Due to this and also not wanting to overload Ellie with surgery's (considering she has 2 eye surgery's in the next 5 weeks) we have decided to take the conservative approach.</div><div><br /></div><div>The neurosurgeon is going to review Ellie in 6 months, to see where she is at... A real positive is that Ellie wants to stand, Ellie wants to walk, and with assistance really gives it a try... The only reason we Will try the surgery to see if it helps is if in 6 months time, Ellie has regressed or she hasn't improved at all..</div><div><br /></div><div>But looking back on Ellie's progress in many areas of her development over the last 6-8 months, I am not too concerned... This little girl just keeps on making gains..!!</div><div><br /></div></div><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzCxbgKeOYU2ub_LbuN7nkF0OQu2E_GExh3c0WZ88Ef7_Pq1zayi9Eoh1b9Y9nrgjJVWiTFL8BC5KKz-GcW5g' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com3tag:blogger.com,1999:blog-2460856833026359215.post-28345195686911868992012-02-13T13:43:00.003+11:002012-02-13T14:01:16.630+11:00Wow has it been that long...I cant believe its been almost 1 month since my last blog post... Life just seems to be very consuming at the moment...<div><br /></div><div>Ellie has started back at her <span class="blsp-spelling-error" id="SPELLING_ERROR_1">SDS</span> (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. </div><div><br /></div><div>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:</div><div><br /></div><div>"What are your <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">expectations</span> of the swimming lessons for Ellie" Luke responded quite quickly with "We want Ellie to be an <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">Olympic</span> swimmer".... </div><div><br /></div><div>The instructor was not sure what to say...</div><div>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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">sometimes</span> when its not appropriate) you need to take life lightly... This helps you to be <span class="blsp-spelling-error" id="SPELLING_ERROR_5">sain</span>.</div><div><br /></div><div>I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">don't</span> think we have massive expectations of the swimming classes. We <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">don't</span> know if Ellie will be able to swim. What we do know is that we want to give her every <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">opportunity</span> to be the best that she can be. We want to give her as much experiences as a <span class="blsp-spelling-error" id="SPELLING_ERROR_9">neuro</span> typical child and let her have fun... </div><div><br /></div><div>The swimming also gives me a break, as Luke will be taking her.The swimming will give Ellie some "Dad time" </div><div><br /></div><div><b>And soon we will be a family of 4...</b></div><div>As most of you know we are expecting our second child. We have had some extra testing and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">ultrasounds</span>, and so far everything is looking as it should. This pregnancy has been quite boring in <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">comparison</span> to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">Ellie's</span>, but that is what we needed... a boring, uncomplicated pregnancy, which allows us to just "enjoy" being pregnant... not <span class="blsp-spelling-corrected" id="SPELLING_ERROR_13">worrying</span> about what your next ultrasound or OB appointment was going to bring.</div><div><br /></div><div>I am <span class="blsp-spelling-corrected" id="SPELLING_ERROR_14">intrigued</span> to see how Ellie responds to our new addition.</div><div>I am nervous about going from a family of 3 to 4.</div><div>I am worried about how I will do all that Ellie needs as well as have a newborn.</div><div>I am excited to meet our new addition.</div><div><br /></div><div>Life will be busy, but it will be worth it in the end...!!!</div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com3tag:blogger.com,1999:blog-2460856833026359215.post-5001976516083356982012-01-14T14:58:00.001+11:002012-01-14T15:02:17.945+11:00Lost for words...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.<br />
<br />
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.<br />
<br />
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'<br />
<br />
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.<br />
<br />
They were told. "No, she is not eligible because of her quality of life, because of her mental delays"<br />
<br />
What the hell...!!!<br />
<br />
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....<br />
<br />
These Dr's are playing God with this child and family.<br />
<br />
Alcoholics get new livers, and I'm sure there are quite a few that still drink<br />
Smokers get new lungs, but I'm sure that doesn't stop them all from smoking<br />
<br />
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.<br />
<br />
Now I am no legal or medical expert by any means, however this does not sound right...<br />
<br />
It is not ethical<br />
It is not moral<br />
And most of all it is not HUMANE<br />
<br />
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.<br />
<br />
Mia has the right to live...<br />
Her family have the right to continue to enjoy her in their life...<br />
<br />
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:<br />
<br />
<a href="http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive">www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive</a><br />
<br />
To read Mia's story told by her parents, please visit here:<br />
<br />
<a href="http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/">www.wolfhirschhorn.org/2012/01/amelia/brick-walls/</a><br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com2tag:blogger.com,1999:blog-2460856833026359215.post-41936856543128604282012-01-14T14:05:00.004+11:002012-01-14T14:32:22.459+11:00Our little poser... she melts my heart<div style="text-align: left;">A while ago, a lovely lady called Melissa from <a href="http://memoriesofminephotography.com/">Memories Of Mine Photography</a> contacted me. She had come across <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Ellie's</span> blog, and also 4P Aussie <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Kidz</span>. 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...</div><div><br /></div><div>I wanted to wait until she had her cleft lip repaired.. Tick</div><div>I wanted to wait until she had an artificial eye... Tick</div><div>I wanted to wait until she was on a better seizure med, so she <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">didn't</span> look zoned out... Tick</div><div>I wanted to wait until she was sitting... Tick</div><div><br /></div><div>You get my picture, I was always putting it off... for reasons that I thought would prevent us getting the perfect <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">picture</span>... </div><div><br /></div><div>When this opportunity <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">arose</span>, I had no other reasons. I had no other excuses. Why not? I thought.</div><div><br /></div><div>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...</div><div><br /></div><div>Ellie was brilliant. She sat still, she smiled for the camera.... she was actually posing for some shots. The end result..... BLEW US AWAY. </div><div><br /></div><div><span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">Ellie's</span> 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 </div><div><br /></div><div>Here are just some of the shots.... Enjoy</div><div><br /></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmPYNJJn2bDQ8A7ne4GCjt0shj0UrwnR_B_QKic63KOCmu7JpTf2dJpH5NEa6PMGf5u-s8Bi-1MOLVVk6mueQYTBQGya3E3-DLxWdDk5VtUj6gnqTkUEam7NubnBpwsS6jbH_yNiHVOtai/s320/Ellie+1.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697323303555266914" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 229px; height: 320px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIn8FPU3u8K6rdmtGOOqqdwmy2dv5XwLnACxBt6sfjIGf13qikZaRYHuRjy0c_cfepMI8zEfK8RHUDPdgG9LMGPvsVphP3XmXCcM6ipnC3v-H1P9Zte94e_CkWsVj0yoKRA8VpHj2rNw4o/s320/Ellie+2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697323301763927410" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 229px; height: 320px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXsl5lu1026fC6dX7QbuI6Vw2f26aPBwccI3vt3CsO0n-NJYvLOuqeAIvY5XNZk4ZMGkKibFklxiN1XoOEw-wRiT00DLQ8B_FgEbKbcO7wH3bJCjCvldHXIQHzxZ6oyfoNC6qhxfpmLpf5/s320/Ellie+3.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697323309877831042" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 229px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiypw4xUHXwhRiBn8A-m6e7BW0MFevK40NTYcERnl42NXBN18u92tRjcK5Kkk6b40z8q5m0a8jZoaP_uepTI7HdTiCxx8cJ15OHYBLoI_z-cI9UvRfYvQeN-zhAEPZ6H0VmO9aOy_ZHfvB8/s320/Ellie+4.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697323314484790738" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 229px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgofS6AkBSe6GhaLBLuLrBuyvJmwDmlRVRFRz8S7qqPD0xHMh0Yn_OtTEjXqvwUMLtiwGsNunkZtH-dF5EnwuLeB3Qo1ychT_ieIWBbICbJ43zfHFplI9vN0cjKoORoAo9_EAY63HJ8qFFp/s320/Ellie+5.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697323317101087618" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 229px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiugZzuhwwPFTFW-ym0LZBsrrHJpM-BpbJbLGePdpoZqyBh__Z4z269cW5JluXOsbDfS2yDFUyYkqL7PTDLA_DsKqF08-TiTwfQdZC30-KsAqa6khRajL4q3uyfmcKpiiRWJ6rg_gcxG5-6/s320/Ellie+6.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697324147265862594" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 229px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxKR5j3IEnkdyOOIore6efZ_keQqH6_afEo4r39M2T6SsX876qdRhhlS2zmvGAj0A-Od-ixGU9eH7KVR4mYWR1wTl9ps4uNl7db2UQrBdeIHFJgz-u6Ajbp4R9FP9kznMJScXps5bI-emt/s320/Ellie+7.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697324151782664482" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 229px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjfdnUclOdXPEzSWqK3Rhyphenhyphen9iweAsYN-x446TZ25TQjTgHj8wJT62yxMPjB_eMxdSDinI2TG-Bmqd2d6VrvSiMYtCJRl6qFJJgSSt7bP7iC2nDY3tiD_s8Oit4AzLE_igXrDbXJeQSY1e70/s320/Ellie+8.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697324165613793858" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 229px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixn_Hr2CozMzxnQ4q-Ag8_tnFMW_gEYx-kWE1-p_R6ZcLbrR9nPr7NxE19e8H-bxE8z1trhVwDs-16BcqBhwT39wvVHLalBG2IWn-qsQIMkM5zvjBeH0mHaPeJAQI6CJVEdZ_aJuCDGhuz/s320/Ellie+9.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697324170121373538" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 229px; height: 320px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5YFfmN8o81DS2yDDNbTNbSI-8Uk4iWEL0fi67RaH_wRt5V-6_xEoo5w7vBeLW5xMYEAiPGAsy9GIcaTeuc5SGsgwjzs8QjsaoEMIRLy9v8EvUvn-w01d6TmWjIuQEinYhHgMHcDsAem4g/s320/Ellie+10.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697324178726383442" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 229px; height: 320px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUsZvc7mASC4_pdwT3xtm7JJH__v2ZUPk0YjfpKEgNMsezTaMc0gHCKo2ZEDLZ2rLnMH_fqPVcCS_sbaWKEsSJPi_UelPwOpIYikKBC7mMowlobEz1yZgUjvzO5NgD6qLrzjGCrN3x2aje/s320/Ellie+11.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5697324621709340386" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 229px; " /></span></div><div style="text-align: left;"><span class="Apple-style-span" style="color:#0000ee;"><br /></span></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com8tag:blogger.com,1999:blog-2460856833026359215.post-66129887710415718992011-12-28T15:05:00.004+11:002011-12-28T15:16:53.276+11:00Papparazi.... Snapparazi!!<div style="text-align: center;"><b><span class="Apple-style-span" style="color:#6600cc;">Fun in the sun...</span></b></div><div style="text-align: center;"><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWA1zEyAYfgxmRJXjU-Ar33g-0jfdjpQNFplZk9nKa43LE9h755I8YG66ZUDvUtiWqu9F0NTow8Gx-a8EOxc5Uk5de4IIglLAah-qaE1i2yU0CUp6CtstqDZYTefacznbduexY5y0keooi/s1600/IMG_1371.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWA1zEyAYfgxmRJXjU-Ar33g-0jfdjpQNFplZk9nKa43LE9h755I8YG66ZUDvUtiWqu9F0NTow8Gx-a8EOxc5Uk5de4IIglLAah-qaE1i2yU0CUp6CtstqDZYTefacznbduexY5y0keooi/s320/IMG_1371.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5691026242440842306" /></a><div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz1WxHYG2L4B2UmDtJca_O8Z5_Jn4XQysm2XxtVb4-mbn-ECaayYiJEy2NdZEoAv-Phe-deuLOKE7Q7iKF3HJPb4UBmQCnrUJHdgUPUfrdqczuTZ2_eJDNL1WKVQJfteT3BDWTt44tiomW/s1600/IMG_1375.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz1WxHYG2L4B2UmDtJca_O8Z5_Jn4XQysm2XxtVb4-mbn-ECaayYiJEy2NdZEoAv-Phe-deuLOKE7Q7iKF3HJPb4UBmQCnrUJHdgUPUfrdqczuTZ2_eJDNL1WKVQJfteT3BDWTt44tiomW/s320/IMG_1375.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5691026245932928530" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></a></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrGPOZGUOktUC-UqhYBK5IPROo702CuN6pEdosB5FurgOQLBQHE9iMGSBRuBA8ynVMYyiRaBEMMKEsZ9dlatGl1BJHu5TYAJ2W7QiPDDKDm49_KzlOwwbzkISawLWVu3jDcN9Pqij7h-UJ/s1600/IMG_1362.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrGPOZGUOktUC-UqhYBK5IPROo702CuN6pEdosB5FurgOQLBQHE9iMGSBRuBA8ynVMYyiRaBEMMKEsZ9dlatGl1BJHu5TYAJ2W7QiPDDKDm49_KzlOwwbzkISawLWVu3jDcN9Pqij7h-UJ/s320/IMG_1362.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5691026235946579730" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikdxJPOAV5FpipVB-nhQOv4g1vxMRiOpSFU1tzf1XVCGBYs3-4y_eP_jEZZoqCDHIWGtJBYMHVQmd-tEFXeiNDH-1g-pyLzQO0ugyaevRi93waoJ7Hyyn7Q7EAgyg7sWa64riIXe9XXc-J/s1600/IMG_1350.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 239px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikdxJPOAV5FpipVB-nhQOv4g1vxMRiOpSFU1tzf1XVCGBYs3-4y_eP_jEZZoqCDHIWGtJBYMHVQmd-tEFXeiNDH-1g-pyLzQO0ugyaevRi93waoJ7Hyyn7Q7EAgyg7sWa64riIXe9XXc-J/s320/IMG_1350.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5691026229641998242" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_X_f0bvCswupFSkjWFQ-a49XBT_pqQ7rlL9q47h3QXr-8dRSkjAjoFhnog6tC8smoT27lcOT1vZZ_EW0S2Il8bCTGXz2lQtqMokFtcUeiIim2_bmURdGo8mfNcVgCgm8JDOm7EGgB54A3/s1600/IMG_1348.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_X_f0bvCswupFSkjWFQ-a49XBT_pqQ7rlL9q47h3QXr-8dRSkjAjoFhnog6tC8smoT27lcOT1vZZ_EW0S2Il8bCTGXz2lQtqMokFtcUeiIim2_bmURdGo8mfNcVgCgm8JDOm7EGgB54A3/s320/IMG_1348.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5691026223433769586" /></a><div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgunrw4tAe6TvQqeIQ0FQAA6xo1c0pfYnIrWUtmPB7JIggbcRN4iPMZkJNoja67-4gaME2W_fv-j7Yq_p88jOmcaMJojUYtFoazSwyLOVYqQsvUsGO9MWG0hek7TDbvW1UdjEL6abIuo2DH/s320/IMG_1382.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5691027698078227138" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></div><div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDY0oQXWF55CBqMszh30oQzuIt7uRhuWBkCGHo5oLDr2Tn7hyphenhyphenQvhQcC1j0bf21bUsxTnPPxYg1Q41CPDNueeQ0Da_1XsYEJ4-vCjzyhKy7SZHgWuSuwv3o49sH16izBwCal8U__wW9jEmi/s320/IMG_1380.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5691027701721689986" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 237px; height: 320px; " /></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><br /></span></div><br /><br /></div></div></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com7tag:blogger.com,1999:blog-2460856833026359215.post-65474235916062473112011-12-15T14:20:00.004+11:002011-12-15T14:40:15.450+11:00Slack Slack Slack... But ALOT has been going on<div style="text-align: left;">How slack am I? No blog posts for 3 weeks... Its not that I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">haven't</span> wanted too... I've had an excuse..!! I've been tired.. I've even been napping in the afternoon when Ellie sleeps...</div><div><br /></div><div>My tiredness will all be worth it though... as of June 23, 2012 we will have another addition to our family... <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">That's</span> right, Little Ellie is going to be a big sister.. We are very very excited... Nervous slightly, but still very excited...</div><div><br /></div><div>Here is the little one at 12 weeks</div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6mnlAulX91uvla2BtBEf0t2ZMgsVx7ovzZ2ljv0a2aPJKVtlAxNTGfs2bx_q-JHbK-O1o85leAySNSYEdb29EEj4VIL6icUVNVRVuQTMUoT1Y8Ul81QoQcBt6eZFaCo9YhDCLuF8QQcG7/s320/Ultrasound.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5686190654463572194" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 236px; height: 320px; " /></span></div><div><span class="Apple-style-span" style="color:#0000ee;"><br /></span></div><div>I have to admit, I felt <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">extremely</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_3">sonographer</span> put me right at ease... I think she saw the fear and almost tears in my eyes before we did the ultrasound... </div><div><br /></div><div>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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">extremely</span> active, so that was great to see.</div><div><br /></div><div>We walked out with <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">allot</span> of photos, and a much more relaxed Mummy (+ Daddy)</div><div><br /></div><div><b>Ellies Eye</b></div><div>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.</div><div><br /></div><div>Me - "I would like to enquire about some lost property that I lost last friday"</div><div>Operator - "What exactly did you loose"</div><div>Me - My daughters eye...!!!</div><div><br /></div><div>Silence......</div><div><br /></div><div>Operator - "You have made my day interesting, I have never been asked to see if an eye has been handed in"</div><div><br /></div><div>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..!!!</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com4tag:blogger.com,1999:blog-2460856833026359215.post-88323345555293188502011-11-22T15:14:00.003+11:002011-11-22T15:30:41.107+11:00My observations of others got me thinking...<i>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.</i><div><i><br /></i></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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. </div><div><br /></div><div>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</div><div><br /></div><div>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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">stoped</span> 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.</div><div><br /></div><div>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.</div><div><br /></div><div><br /></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com7tag:blogger.com,1999:blog-2460856833026359215.post-37325178482745116002011-10-31T15:40:00.002+11:002012-06-29T16:17:22.253+10:00Ellies new skill... we call her the "Bum Shuffler"Ellie is continually amazing us lately... <br />
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<br /></div>
<div>
4 months ago she learnt to sit independently.</div>
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She then learnt to turn around while sitting.</div>
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Most recently she can pull to stand if you hold her hands....</div>
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<div>
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..!!</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyjSIq9Ws7fS16Z8e2M-NDb8_PGqpXOY7QocsRt49uTd3eZfofcNzvVBcyfyYJrVRJhsLpqcLKaY4LFM7KMnQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com5tag:blogger.com,1999:blog-2460856833026359215.post-11412065085531426132011-10-31T15:33:00.004+11:002011-10-31T15:40:51.749+11:00Massive lack of updates... But alots being going onFirst of all lets start with the first fundraiser that was held 2 weeks ago for 4P Aussie <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Kidz</span>. <div>We set up 4P Aussie <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Kidz</span> to not only raise awareness about <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">Ellie's</span> condition, Wolf <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Hirschhorn</span> Syndrome (<span class="blsp-spelling-error" id="SPELLING_ERROR_4">WHS</span>), but to also raise money. Money to assist families in Australia who also have children with <span class="blsp-spelling-error" id="SPELLING_ERROR_5">WHS</span>. The money raised will go towards buying equipment that <span class="blsp-spelling-error" id="SPELLING_ERROR_6">WHS</span> children may require, such as standing frames, walking frames, car sets, etc....</div><div><br /></div><div>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.</div><div><br /></div><div>The night was a massive success.. we had about 140 people attend. I spent <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">allot</span> 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... <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">Allot</span> of people walked away with great gifts..!!</div><div><br /></div><div>A MASSIVE Thank You to all who were involved, helped and attended on the night.. The night <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">wouldn't</span> have been as successful as it was, without you..</div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com2tag:blogger.com,1999:blog-2460856833026359215.post-89730467694785130972011-10-13T21:18:00.005+11:002011-10-13T22:09:52.628+11:00A night at our local RotaryLast night Luke, Ellie and I had the pleasure of being invited as 'guest speakers' at our local Rotary. I was so excited about this... !!<div><br /></div><div>Excited about making more people aware of Wolf Hirschhorn Syndrome (WHS)</div><div>Excited about making more people aware of 4P Aussie Kidz</div><div>Definately not excited about doing my talk..</div><div><br /></div><div>I was told I had 3o mins.. Are you serious?? 30 minutes. I was worried I couldnt even fill 10 minutes.</div><div><br /></div><div>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...</div><div><br /></div><div>Easy enough said, and it looked easy enough on paper..</div><div><br /></div><div>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.... </div><div><br /></div><div>I lost my breath...I froze... I felt the tears welling in my eyes... It brought back all those feelings, thoughts, and fears... </div><div><br /></div><div>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.</div><div><br /></div><div>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...</div><div><br /></div><div>Everyone at Rotary was very interested in the information that we provided, and were won over by Ellie... </div><div><br /></div><div>We are very Thankfull to Dingley Rotary for their time.</div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com3tag:blogger.com,1999:blog-2460856833026359215.post-89905724948814543162011-10-04T21:23:00.005+11:002011-10-04T21:44:12.347+11:00I'm Slack.... SORRY....! But I have new pic's<div style="text-align: left;">I just realized that it has been 2 weeks since I have posted on the blog... Sorry!!!</div><div><br /></div><div>I have been flat chat with getting things sorted for our first fundraiser for <a href="http://www.4paussiekidz.org.au/">4P Aussie Kidz</a>, which is on the 22 October. (less than 3 weeks away)</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>If you want to buy tickets, please download and fill out the form by clicking on the link below</div><div><br /></div><div><a href="http://www.4paussiekidz.org.au/events.html">BUY TICKETS TO 4P AUSSIE KIDZ FUNDRAISER - 22 OCTOBER</a></div><div><br /></div><div>In the meantime here are some new pictures of our girl... Love these shots...!!!</div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2ZMTFNVJXyN5l29nDYGJAqJJr8QKKpe1ksPKUXwJx9KgljfpC65DYEjne95LH_wqnQIrh26UIsmKBymAeXRGKbaMqxNAlZcSWbrnYJEiK___YDDbSvewjfZQ1eN4vNFRIWq3DwrZNbzha/s320/IMG_1074.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659584964306167842" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr5b-dmZrIyz6juQoLgK45GfoeQa-y5VhSryV-i7-wdAdRtHiwXHsTs8JSKdTTOxeO8PrTOcNdP9hPITqPED0u9tClskDcYYZr5CncIIfcVhvSM1xti9WLqRqqmXUMQEoP4VewwQh-Yz7s/s320/IMG_1072.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659584956476971266" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdwEid40Q7345sekxAZM90c9kYYMMYclCSZVbT_xTnd20sYWjXeYFPZVK8W0SwDZFCGxrH3_VjPgLtOU_0uOIS0Qbvrfanb-YOhSGwHMcKFvtryEU2H1kyGG_5RLQxi7gX-eOe4DW7GFqp/s320/IMG_1075.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659584980580746930" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 279px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKOwZjibuGJmWnQMttFLKs0Y7xGgwO3r6J51IaeYyYQUOI20bnoHIJGxOIumCsJXyRah-3oKPhUL5mMWFJkxrbrp_Vkv81oE4ZR_BkblnhrcbpumxgEdMUAXDeIkz-QjTFkqzdAS-oFPi9/s320/IMG_1078.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659584984016049218" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9AyMMkaz7j6QbtSngDzAqb28YU4kvXx34-K5277TKHWw_VdgvYmJkkmCrhWVXqxP3-PvzYnk2e2fYJUrnxLhzCrCda3wotxEpzz481uBZlTI83NruqmVgBd6ERBXmL_2S5Xpx8-Smo5z1/s320/IMG_1073.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5659584961076642562" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><br /></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><br /></span></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><br /></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><br /></span></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><br /></span></div><div><br /></div><div><br /></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com2tag:blogger.com,1999:blog-2460856833026359215.post-88906799061287571172011-09-20T16:15:00.006+10:002011-09-20T16:27:35.530+10:00If Ellie could talk...<div>Sometimes I wonder if Ellie could talk, what would she say...</div><div><br /></div><div>Like when we play 'peek-a-boo' with her, and she LOVES it... Would she say "More, More"</div><div><br /></div><div>When Luke throws her in the air (very high) would she say "Again Again"</div><div><br /></div><div>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.</div><div><br /></div><div>When we go in her room in the morning and she giggles when she see's Luke or I, would she say, "Good Morning"</div><div><br /></div><div>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"</div><div><br /></div><div>When she snuggles in at night, after a busy day... would she say "I Love You"</div><div><br /></div><div>No, Ellie doesnt say these things </div><div>But yes oh yes, I believe she thinks them... You see it in her eyes and face...!!</div><div><div><br /></div></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com5tag:blogger.com,1999:blog-2460856833026359215.post-7408705272656599402011-09-10T21:37:00.004+10:002011-09-10T21:50:24.828+10:00Milestones (Not the standard kind)<div style="text-align: left;">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.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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?</div><div><br /></div><div>Ellie loved it...!!</div><div>I loved it...!!</div><div><br /></div><div>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.</div><div><br /></div><div>Ellie spent the whole time looking down at her feet and the ground and making lots of noise..</div><div><br /></div><div>New milestone reached. Check...</div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwe04bsCvbOQPDN38ALfFfirEiTKSI7h6d_UgcooXtseQ89W81KUGfEBHhnAca-DMlHHRXvVl-UY_33HUVlcQ6GIbt1aV4Row4DvqYbYkjGy4AEzl3a4YiqfrOpAsf0TXNka80E6QoyIZ8/s320/IMG_1040.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5650696254298127698" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjl4va52XqYzdroawes80bXsedDtXmy1iPuaf_LemRB63okp-VRlPeQmDcVgR-Ops8XF9crGY4Kw9EFjZ9izebU7v7DBGQSnelDMIswFoMiOfZ14W42wiy8kMAbfaOXRNBZA4-zSsXGD2q2/s320/IMG_1037.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5650696250447603250" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><br /></span></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><br /></span></div><div><br /></div><div><br /></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com13tag:blogger.com,1999:blog-2460856833026359215.post-11100681150913914622011-08-28T18:40:00.002+10:002011-08-28T18:55:55.886+10:00My 'Loves' lately....Today we had a great day, Luke, Ellie and I went down to <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Healesville</span> to pick up some wine donations for the first fundraiser for 4P Aussie <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Kidz</span>. It was a beautiful day, with great weather and it got me thinking about what I love at the moment.<div>
<br /></div><div><ul><li>I LOVE that summer is on its way. (I know Spring is next, but that <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">doesn't</span> matter. There is more sunshine on the way</li><li>I LOVE that Ellie is loving being outdoors in this nice weather... and we have spent <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">allot</span> of time with our dog coco in the park. Ellie loves it</li><li>I LOVE how <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">inquisitive</span> Ellie is.</li><li>I LOVE how Happy and Funny Ellie is at the moment. She cracks us up...!!!</li><li>I LOVE the Ellie is a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">daddy's</span> girl. The smile on her face when he comes home is priceless.</li><li>I LOVE the generosity of complete strangers. After our story on Ellie, Wolf <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Hirschhorn</span> Syndrome and 4p Aussie <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Kidz</span> went to air on Channel 7, we were contacted by 2 lovely ladies, Joanne and Hanna from Got it in the Bag (<a href="http://www.gotitinthebag.com">www.gotitinthebag.com</a>). They do promotional show bags filled with <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">flyer's</span>, vouchers, special offers etc, and they get handed out at markets, expos, shows etc. They offered to put the <span class="blsp-spelling-error" id="SPELLING_ERROR_9">flyer</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">massive</span>, this meant that 250+ more people were going to be aware of <span class="blsp-spelling-error" id="SPELLING_ERROR_11">WHS</span> and also 4P Aussie <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Kidz</span>. They did this at no charge to us. For that I am thankful...!!</li><li>Another act of generosity was today, when we were down at <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Healesville</span> 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.</li></ul><div>Life is good....!!!!</div></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com4tag:blogger.com,1999:blog-2460856833026359215.post-40946104104275040382011-08-27T20:59:00.010+10:002011-08-27T21:34:07.410+10:00Papparazi.... Snapparazzi!!<div style="text-align: center;"><b>Fun in the park</b></div><div style="text-align: center;"><b>
<br /></b></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwifdxyMFt-nOMmlXcdyuSn-yrCnYqVSgowaxQRoF0HDtZ-kC-x3AhW1fX2iLtEWWzw4J40itOqqZjlWvBKl93tb_NrOJkaH2dOH6YV-qBl5x7B-k48LdsrDxAWPEB0ekM3W-djvb-A1UC/s320/IMG_2401.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645492496110513586" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></span></div><div>
<br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWE5QqK4b3GtZdpTEL2hL0jADHpib-iSHjknC6y72WhwQZsUiv0tId5YPymI3h0WgGL6JHiuoCUYLTTezMPfkbHmqXp2p_qJQhlGJcPMoNzdND7zec3So6wYjR48vsFYUGs9QwBKDBXwP8/s1600/IMG_2402.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWE5QqK4b3GtZdpTEL2hL0jADHpib-iSHjknC6y72WhwQZsUiv0tId5YPymI3h0WgGL6JHiuoCUYLTTezMPfkbHmqXp2p_qJQhlGJcPMoNzdND7zec3So6wYjR48vsFYUGs9QwBKDBXwP8/s320/IMG_2402.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645492498444528114" /></a><div><div style="text-align: center;"><span class="Apple-style-span" style="color:#0000ee;"><u>
<br /></u></span></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLMHLSNlaD6TYK8Y9IZZ3N53mxgBYjwyuC2AuUbF0d_1fVRcPmMC8Kfzd3m9NW5aJGChTZ0OUn43NCJ_0eylpukxC5F03WgSYDrkhmcaOlhF147vAg3-ODChDd22WpNNj5zlnTONMXsgzj/s1600/IMG_2390.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLMHLSNlaD6TYK8Y9IZZ3N53mxgBYjwyuC2AuUbF0d_1fVRcPmMC8Kfzd3m9NW5aJGChTZ0OUn43NCJ_0eylpukxC5F03WgSYDrkhmcaOlhF147vAg3-ODChDd22WpNNj5zlnTONMXsgzj/s320/IMG_2390.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645492489500151026" /></a>
<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeHyQIaDWIqQ7gA16L6qImHLEP5BAUszyipmzoSQ0HGWIo_mY04tbAftRephaK31g3HcfKYwba_2Og_DeAxsBKd0rbCbahGIjEWnqRPFUEjgUL21TmfToYBoWPgAMODbufdeLWUM2oy-xa/s1600/IMG_2444.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeHyQIaDWIqQ7gA16L6qImHLEP5BAUszyipmzoSQ0HGWIo_mY04tbAftRephaK31g3HcfKYwba_2Og_DeAxsBKd0rbCbahGIjEWnqRPFUEjgUL21TmfToYBoWPgAMODbufdeLWUM2oy-xa/s320/IMG_2444.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645492486215881506" /></a></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlOaSe6fm9BpCddPtE6lCsN4YQmfqbaYZiie3JCiuK_YdwejHbwG3w4QU29wIbqjge31Vkm0VeNeO5SgXC4OyJmdt1FbbrI2h_oDs5Vck6_CBquFbkbOdqWZtRAThFP2I_iuGIbO_BLpLr/s320/IMG_2414.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645493654232887682" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPUS-ZkwPExIW6_qGZhojKdV8DQv2J90AZjc0RBcXZOXhLUDbot2S9vwaFftwnH_qHQXdEhnsnZUESFrXXQObjC7cGwEWLJ5jGJ1KMOkGBgScMnMh5AQZT37ssQ1Y2mXjlNwXWJVz-CLRH/s320/IMG_2409.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645494242069320130" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color:#0000ee;"><b>Cheeky Girl</b></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyaeNCci537LK0udKTekO8CDmBpNlaePV9EEYpfxicFEIrZY_TbwQU0NES6X-JdzQOKCNnS7fhUruDq8XSnqJiK68tclZjc58OiclqK73J2wmjM5L0Zaka7v1LTWtI-FnvbP94H79LFAPe/s320/IMG_0907.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645495091237326674" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgumQDhS29mLQ_lDbRYA741clEBRRtz7omt-AWl7RcRD7E-p1yapGE9_eTYcn4Z9V6eI0s_BNQ6KZR3bcNi7Cz0chCXw7eJLs4WfMh2mqVRLvCCNvtIZ4TYcygdXvY6RkES_-m2vxo_K3uI/s320/IMG_0908.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645495092586706258" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilkj9WCyAjYmlHLBZyIZojZFsWYcjLxFKCVmxx0oTuMBu6IM5OyA80twpaKbZxM6DG_BgNPks1g-YzAbXshRaSCOvlBFndOyKkmDyxlUAslbUqm04Hyys2qJPuLsgbKBgNq7h3SHMg-q59/s320/IMG_0909.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645495099329431986" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; ">My Little Ballerina</span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd2becAn_ZFzu9pkYJ8vdiYG7beDYdQPN-9JVsai59SPTkVjYZquZSERtH8-FZe_Vs_v4YpMxAA2thRgyMvDqrFiwwru8HN-rBsW4ykPMD4ZadeCbDr86OlMc6iL4FKcGLOM2fp0Z7iAMc/s320/IMG_0926.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5645496005392699570" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 238px; height: 320px; " /></span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; ">
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<br /></div>Anonymoushttp://www.blogger.com/profile/02314822895982449826noreply@blogger.com4