A Blog About a Bloke-Living with WHS

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

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: Anonymous Jan 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 wit...

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

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...

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. ...

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 c...

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...

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. ...

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.

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 ...

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...