Bitter Sweet

Bittersweet. Meaning: Producing or expressing a mixture of pain and pleasure

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'

I think I have always been in this 'Bittersweet' world. However having Cooper has made me realise this. 

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. 

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. These times are bitter because it really smacks you in the face how hard having a child with a disability is. 

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. 

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

and you SMILE

These 2 make me smile...!!

And then there were 4...!!

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.

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..!!!

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..!!)

Here are some pics of our little man. LOVE him to bits xx

Close 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.

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"

Yes it upset me, but I thought "How dare you..!! a complete stranger make me feel uncomfortable about my daughter"

What did I do? How did I deal with it?

I would stare back at them..!! Till I made them cringe and look away, and hopefully I made them feel awkward...

I would approach them, and let them know that I heard there  horrible comments about my daughter and that it was  mean and rude...

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.

What on earth makes complete strangers feel the need to voice there horrible thoughts about people with disabilities?

Is it really necessary to point, laugh and ridicule these people?

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.

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...!

In this video I see her excitement at finding out she is pregnant...
I see her fear as they realise half way through the pregnancy, there is problems with their baby...
I see her sadness as she talks about how strangers treat her and her baby boy...
I see her joy in her face as she talks about her beautiful boy...

I see everything that we have been though.

www.youtube.com/watch?v=oWCbkyR0cy0

Reflections. 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.

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.

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....

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.

How far we have come...!!
And how much we have learnt... Not only about Ellie but also about ourselves.

(The sock on the right is Ellies current sock size..!!)

From this...

To This...!!! 

Amazons response to my complaint

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

(Read that blog post here)

I did ask for a response. Read this below. Now.. I did expect that I would get a generic response. However I did not expect to get a generic response that didn't even answer my enquiry or acknowledge my complaint.. I don't know what has infuriated me more... the book that is for sale, or the lack of proactivness to my complaint... I feel a reply email coming on.

Watch this space..!!

_________________________________

Hello,

The items you referenced are not available for sale. Thank you for contacting us.

Thank you for your inquiry. Did I solve your problem?

If yes, please click here:
http://www.amazon.com/gp/help/survey?p=A1A18G8TBLK8BA&k=hy

If no, please click here:
http://www.amazon.com/gp/help/survey?p=A1A18G8TBLK8BA&k=hn



Jagadish S

Boycott Amazon.com

This afternoon, a friend of a child with a disability put something on FB that caught my eye. It was from a very, supposedly, reputable online store.

They were selling a book titled: Duh... - 101 Reasons You Might Be a Retard

LOST FOR WORDS...!!!

Needless to say I have sent them a complaint email... have a read of my email below.

________________________

Appalled, shocked, outraged, offended.... this doesn't even begin to describe what I felt when I saw a book for sale on your website, called: Duh... - 101 Reasons You Might Be a Retard

I am the mother of a 3.5 year old disabled girl. She has physical and intellectual disability's. 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.

On your website in the book description it states, the following:

Is it genetic or influenced by environment? The answer really doesn't matter, but what does matter is being able to identify a retard.

WTF?? 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 disability's are human. They deserve respect, and dignity as do all humans.

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 shouldn't be printed... but I'm sure you get my drift.

One last word, I noticed that the book is only for sale for $0.99c. Is Amazon.com that desperate for a F***ing $$$ That they need to resort to selling such obscene, offensive crap.

I would love to see a reply to my complaint...

From one very outraged mother of an absolutely beautiful disabled girl

(Watch this space)

Eye surgery update

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.

I spoke to her eye surgeon 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 plan 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.

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.

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.

Another eye surgery.

Ellie is booked in for another eye surgery tomorrow.

She will be having a Hyrdrophilic Orbital Expander put into her right eye socket. These expander's 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.

The idea of this expander is for it to stretch out the front part of Ellie's eye socket and also try and create more eye lid, which in turn will mean that we can fit a larger prosthetic eye in.

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.

I am going to chat to Ellie's 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.

It will be an early start tomorrow morning, we have to be in the city at 7:15

Early night for me tonight...!!

She continues to amaze us...

Clever Girl

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..

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...

This just shows that she is definitely understanding what we say to her... Clever little girl

Check out the video below.

Neuro Update

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.

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??

Who knows?? As the neurosurgeon said.. if we had a crystal ball...!!!!

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.

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..

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..!!

Wow 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...

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...

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

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