Sunday, January 29, 2012

Summer Beach Fun

We spent Australia day with our friends down at the beach at Warrnambool. It was an absolutely awesome day. We felt more relaxed on that one day than we had felt all holidays!
Nothing beats hanging out with our friends and watching the kids play together.
So here are some snaps from the beach!

Ryley doesn't like the massive ocean in front of him.
Braeden loving the waves
Me and Ryles just sitting up on the beach watching everyone
Cold Braeden

Wednesday, January 25, 2012

Seriously, I can't help but respond to this.


Now.
Long time readers will know how I feel about 'Anonymous' comments.
I have purposely allowed people to comment on my blog under anonymous, because some of my friends can't remember their google login's. I am happy for people to comment provided they at least sign their name or something.
I find it hard to respond to anonymous comments because I have no idea who I am responding to.

Anyway.

I have written on this blog several times now in reponse to the Amelia Rivera case. No point in linking, as if you scroll down you will see the posts.

Today, I received this comment in response to my first post on the subject:


AnonymousJan 24, 2012 04:08 PM
Please, please, stop! The criticisms of CHOP, without knowing ANY of the details from the hospitals point of view, has got to stop. It's gotten to the point where, if Amelia does have her transplant performed at CHOP, that none of the physicians and nurses skilled at renal transplants want anything to do with the case. Sad, really....

The reason I feel like I have to respond is because of this sentence:

...none of the physicians and nurses skilled at renal transplants want anything to do with the case." 

Say what?

Honestly, anonymous commenter, you are not helping CHOP out here.
And by the way, I am Australian, so my opinion (and you would probably have noticed it if you had cared to read my blog posts properly), is based on the doctor and the social worker and their response and treatment of the Rivera family. I obviously have never been to CHOP.

I am actually really concerned that you feel that the staff at CHOP don't want to help a child who is in a life threatening situation (and surely not because they have read my blog and my alleged criticism of CHOP). This to me is not good enough.
What are they afraid of?
Or is this a general attitude of staff at the hospital?
Up until now, I hadn't heard a bad thing about CHOP. Which doesn't really mean too much, since I live in another continent.

Thanks for stopping by my blog anyway. Perhaps you should read my post entitled Wolf-Hirschhorn Syndrome-Some facts. Then I suggest Quality of Life.






Saturday, January 21, 2012

Garden stuff

I decided to start my garden overhaul today. Remember that one of my goals is to reduce my veg/fruit shopping by 50%. So I took a few photos of some of what has survived my neglect from last year.
As you can tell...not much. 
The fruit trees have done well.
And I just harvested about 10kgs of potatoes.
And really, I am just playing around with the new camera. Hopefully my photos will improve as time goes on...!

Pretty much our only corn plant

Braeden desperately wishing the apples were ready

Peas

One of our plums trees

Lemons

Nectarines




Thursday, January 19, 2012

Wolf-Hirschhorn Syndrome-Some FACTS


  • Kids DO NOT usually die by the age of 2 years old. Yes, it can happen, but that is rare now. Most kids/adults with the syndrome live for well into their 30's, 40's and there is a lady in the US who is 62 years old. She is actually one of the first patients ever diagnosed. 
  • It is a chromosomal disorder which effects the short arm of chromosome 4. It is not caused by drugs, alcohol or poor eating throughout a pregnancy. It is not caused by poor parenting. For 80% of cases, it is something that has occurred spontaneously at conception and is not likely to happen ever again. In the remaining 20% of cases, one of the parents will have something called a balanced translocation. Without going into the genetics too much, it basically means that the parent has passed on the faulty gene at conception. This happened in our case. Something I had no idea of when I conceived Ryley. 
  • Seizures-85% of all children will have some sort of seizure activity. Most grow out of their seizures by the age of 10. Some have a more complex seizure disorder as well. This is the case for Ryley, which is why he still has seizures every day. Most people don't realise he has seizures every day because he has learnt to adapt and protect himself.
  • Slow growth- Usually mistaken for Failure to Thrive. Kids with WHS simply grow slowly. Ryley was always a tiny tiny kid. When he commenced the Ketogenic Diet to control his seizures and got a PEG feeding tube he gained weight very rapidly for a child with WHS. This is still nothing like a neurotypical child. 
  • Heart, kidney, eye (and other organ) defects. These can occur in some children. Ryley has 6 monthly ECG's to monitor his heart as well as a kidney ultrasound. This is only because he is part of a longitudinal study of the Ketogenic Diet. No other reason. Ryley is blind in his right eye. It is the least of his problems.
  • Intellectual Disability/Development Delay. Most children/adults with the syndrome at some point will have a diagnosis of ID/DD (whatever you want to call it...just not mental retardation please). It is an interesting term. Usually used to get access to better therapy services, specialised school settings or adult programs or support funding. It is measured by having the child/adult complete a standard IQ test which is verbally based and not adapted to people who can't use verbal language. Ryley was termed 'unmeasurable' when it was time for his IQ test. He therefore apparently has no IQ. I beg to differ.
  • Some children/adults can talk. If they can't talk they usually find a way of communicating their needs. Ryley lost the few words he had at an early age when the seizures commenced. He has only gotten 2 words back: Mum and Yeah. We don't expect him to ever use verbal language again. But he has developed his own system of communicating. 
  • Some children/adults can walk. We were told Ryley would never walk by an ill-informed medical professional. He started walking at age 7. Many children and adults with WHS do achieve walking, whether it is with a supportive aide or not. It may take them until they are 18, but most will achieve it.
  • Children and adults with WHS command a presence like non other. They are social, happy beings who love to be around people. To smile, laugh, express their joy at life. Ryley's number one motivator is people. He craves human beings. He reaches out to them, and implores them to meet his gaze. He is often described by teachers at his school as being one of the most popular kids. He has many many friends.     

I have written this post in response to some of the utter rubbish I have found floating around the internet. I know many people around the world are keen to learn more about Wolf-Hirschhorn Syndrome and this is a wonderful thing! I am really pleased that people are seeking to learn more.
The reality is that most of the information that is out there is outdated.
It simply doesn't reflect the beauty of our children.

We had the pleasure of hearing from and speaking with Dr John Carey in November last year. He is considered to be one of the world experts on the syndrome. Search for articles written by him if you want accurate medical information.

I am proud of Ryley.
The syndrome doesn't make him who he is.
The medical complexities don't make him who he is.
He is Ryley.
My son.
Who is nearly 10 years old.
I wouldn't have him any other way.


Brothers.
Where to next?


With his cousins.

My Ryley. 











Wednesday, January 18, 2012

Quality of life-can you define it?

One of the main issues, as I see it, that has come out of the Amelia Rivera case, is the issue of quality of life.
Who determines what quality of life is?
How can we even define it?

My opinion is always going to differ from someone else's, so how it even possible to make this term a useful one? The term itself is bandied around by professionals all the time. Always at the supposed 'core' of what drives medical practitioners and professionals is to improve the quality of the life of someone with a disability, or medical condition. What usually happens, is that medical practitioners attempt to find the best medical solution based on their own personal experience and sometimes back that up with scientific evidence.
It is a clinical approach.

As parents, we are driven by emotion.
For most parents, children come first.
We would risk our own lives in order to save or protect them.
This is where a clash of opinion can occur.

Quality of life versus Quantity of life.
I just simply cannot generalise here.
For me, I will always opt for quality of life which I define as being, free from pain, happy, and able to function.
For me, I expect that Ryley will somehow let me know when his physical body has had enough.
I won't put him through anything I don't think will be beneficial.
But that choice needs to be mine.
It shouldn't be taken away from me.
As a parent, I am the one who is the 'expert' on my child. I am the one who cares for him, loves him and wants the world for him.
And I am the one who would give him quality of life, as well as quantity in any way I know how.
No other person, medical or otherwise, should be allowed to refuse to treat my son based on their own perception of his cognition or medical complexities.
And this is why there has been such outrage amongst the online special needs/disability community.
Lessening the value of another person's life is morally wrong.

There has been opinions expressed about how WHS is a 'heartbreaking disease' (I refuse to post the link to the article, but if you want it, just email me). WHS is NOT a heartbreaking disease. It is not something you catch. WHS is a chromosomal disorder that mostly occurs as a de novo deletion. In our case it didn't. I passed on the faulty genes. WHS is a complex syndrome, yes. There are children who have profound disabilities. But there are children who walk, talk, read, write...Most of all, kids with WHS are happy, social and beautiful and enrich the lives of all around them.





Monday, January 16, 2012

Just 'Cos







What a response!





What an unbelievable worldwide response there has been to Amelia's Story. It is heartening to read that people are outraged upon reading the story. This issue will not go away. It will be interesting to read the response of CHOP and see whether Amelia will be able to have the transplant or not.

I think part of the issue that people are having with this, is that it could happen to any of us. I have a child who may be judged as too 'mentally retarded' to be operated on too. I could have a car accident and sustain severe head injuries and have the same judgement placed on me.

No one is immune from this.

Doctors have an incredible amount of power. Too much power if you ask me.
And who gives them that power to decide about people's life?
We do.

Finally, though, a story like the Rivera families one has caused us to question doctors and their opinions.
Maybe, just maybe, they don't know everything.

Most of us who have experienced the medical model of care will attest to the fact that it is cold, clinical, and for people who are meant to save lives, the focus is not actually on the life of the person at all.
Quality of life is a term that is bandied about often.
The truth is, that it seems that only parents are the ones that are actually advocating for an improved quality of life.

I only hope that some change will come from this story. That not only will the doctor and social worker involved be stood down or severely reprimanded, but that darling Amelia will be able to have a kidney transplant. The other benefit might be the awareness about transplants and the importance of being a donor.




Saturday, January 14, 2012

Words fail me

This morning I woke to find a link on my Facebook page.
It sent me to this post here: Brickwalls It is written by another mother of a child with Wolf-Hirschhorn Syndrome.
It makes me angry and sad that in this day and age, we still have to face professionals who view kids with disabilities as not worthy of saving.
A life is a life.
Just because a person can't walk like you, or talk like you, or even eat like you, doesn't mean that they are any less of a person.
Not giving someone life saving surgery because you don't deem them worth it just makes me sick to my stomach. How can a medical professional sit there and 'play God' and refuse a little girl the chance at a longer life?
There are other bloggers too who have written about this.
You can read their blogs here:
Little Something For Me
Kisses For Kaylee
The Adventures of Not Supermom
A Kind Of Crazy
Ellie's Story
Uncommon Sense
Love That Max
(I will add to the links as I can)
Please share and support this family. Already there has been a worldwide public outcry.
You can go here to add your support: Sign the petition
Or jump on Twitter and Facebook and share. People need to be aware of this and need to speak up and say this is NOT GOOD ENOUGH.
Twitter is trending: #TeamAmelia  #lifeformia

Friday, January 13, 2012

Dear Braeden

My darling Braeden,

I can't believe that you are 4 years old today! I realise that you want to be 5 already so you can go to school, but trust me when I say this, you really don't want to grow up too quickly. Once you start school, you are stuck there for the next 13 years. I know you will love that because you love to learn, but you are still my baby boy, and in the blink of an eye you will be an adult.

Dad and I are so so proud of you. You are growing up and becoming such a beautiful kind little man. I have loved watching as you grow and change and I love that we can sit and have a conversation about how things came into existence, or why things work the way they do. Your  memory is incredible! You seriously don't forget anything. We are so proud that you are starting to read a little, as well as starting to write letters of the alphabet. We love your drawings. In fact, as I write this, I am staring at a picture you did of our family. David and I are holding hands. And Ryley has his spikey hair. We all have big smiles on our faces.

I have always said that you are the light of our lives. And you are. From the minute you wake up in the morning you are always happy. You usually tell me that you love me first thing in the morning and you have no idea how that makes me feel. You are kind and often help Ryley with things. You include him in everything, yet you aren't afraid to get cross with him when you need to. I love that you have already learnt one of the most important lessons in life: Unconditional Love. I know that you will carry that with you through your life and change the world somehow.

I am excited for you this year as you attend Kindergarten. What a grown up boy you will be! I can't wait to see what you learn this year. I can't wait to watch you as you continue to grow and develop. You are such a beautiful soul. We are so glad you chose us.

We all love you so much Braeden. Happy 4th Birthday.

Mum and Dad xox
Opening his presents this morning
Scary eyes. But the smile says it all. LOVING the dinosaurs!

Can we go swimming now please?


I have a zillion photos on my phone of Braeden pulling faces. He loves looking at himself and captioning his expressions!




Friday, January 6, 2012

Photo interlude

My camera has died.
Why oh why did this happen right in the middle of holidays?
My iphone is just not going to cut it I don't think.
But I will take some pics and see if they turn out ok.

I have been trying to convince David that I need a good camera (as in a SLR type one).
Hopefully this should help my case somewhat.

We are home from holidays too. The kids have been sleeping even less than they usually do and it is starting to show in their behaviour.
So we are back home from the big smoke.
Braeden has decided he wants to live in the city though.
Mainly he wants to live at the museum with the dinosaurs.
Ryley is happy to be home and wanted to get straight back in the pool.

I will attempt to get some photos up from my iphone later.


Thursday, January 5, 2012

Away from home

Last night as I walked into the supermarket near where I used to live, I decided that I was a bit like a celebrity.

You know.

Coming back to my hometown, shades on, cooler than I was when I left.
Except, I am not a celebrity.
And no one really stopped and stared at me.
Well maybe they might have looked at me funny because I was totally amazed that in Camberwell you don't need to put money in to use a shopping trolley..
Yeah.
I had returned.

We are currently staying at my parents house while they are overseas. Free accomodation and access to every shop under the sun. Got to love that.
My kids are actually loving it too.
Guess that is because they are scoring some stuff too.
And the city is all like big and busy and there are so many weird things to look at.
Like strangers for example.
Braeden names everyone a stranger at the top of his voice.
Ryley tries to kick people or reach out and grab them.
One would think that my children had never experienced life in the big smoke.

We did go to the Museum today which Braeden LOVED.
Ryley, not so much. He found it very boring.

Tomorrow, we will find something equally as exciting/boring to do.

It is extremely nice to be away from home, even if we aren't exactly very far away!









Sunday, January 1, 2012

2012

Is it just me, or is there something really kind of cool about the numbers 2012?
For starters, it is an even number.
Plus, it just seems...well...kind of relaxed.
Or perhaps my feelings on the number are just representative of my current state of mind?

First blog post for the year, and already I am dribbling crap.
It can only get better from here right?

Happy New Year everyone. Hope you all managed to find a way to celebrate.
Personally, I was asleep. This is how I typically spend NYE now. Long gone are my days of partying in the centre of Melbourne or stealing policeman's hats and hiding them in my car.
Oh.
I  mean...um...that is a federal offence and I would never have done that while at a  BNS (Bachelor and Spinster Ball for those unsure).
No. Not me.
Do I miss those days?
Nope.
I did my time.
Plus, the added bonus is that now I wake up on the 1st of January minus the hangover.
I am convincing you right?

Seriously though, Ryley was still unwell so we had to give the celebration we were going to attend a miss. That is ok. We are used to not being able to go to stuff sometimes. It is just part and parcel of having kids, and in particular, one who is never really 100% healthy.

I think this year will be a much better one. It seems so many people had a rotten year last year and hopefully it can only get better. Or, maybe, we will be better at managing the tough times because of what we have learnt this year.
Who knows.
And really, the days do just keep ticking over regardless of what the date is. So in some ways, I am not sure why we place a big emphasis on it being a new beginning etc blah blah.
There has to be a bigger picture than that.

Meanwhile, it is really really hot here.
Ryley would like to live in the pool. Braeden would like to never put clothes on again.
Summer sure is here!







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