Friday, April 30, 2010

Welcome to WHS town

So there are a few things that have happened over recent times that have got a few of us thinking.
I am fairly sure it was Ellie (Jesse's Mum) who had the idea of a town just for us WHS families.

So I am going to run with that idea today and present to you my Utopia (with thanks and acknowledgement to Sir Thomas More).

WHS town welcomes everybody. Our motto is: "Don't DIS our abilities".
When I say everybody is welcome. I do actually mean everybody. We won't discriminate against anyone. We won't judge anyone. Because most of us know what it is like to be judged. And it isn't nice.

Here in WHS town, we have a magnificent cafe. It has pediasure frappachinos for the kids. Every kind of kilogram piling food is avaliable in all kinds of tastes and textures. There is even a spot for automated PEG feeds. Just hook yourself up and enjoy.
In WHS town, there is no stress related to feeding. There is no "should be" when it comes to weight or size. You are what you are (There will also be a ban on comments such as "Why is she/he so small?"). 

Of course, in WHS town, there will be a midnight entertainment centre for all those kids/adults who decide sleep is something they don't really need. This centre will include every source of entertainment you can think of. Parents won't have to worry about what their kids are doing either. There will be qualified, trustworthy carers (who want to actually help out) who will indulge the WHS kids in anything they want to do.
All parents get to sleep through, every single night.

Also avaliable will be lots of funding to ensure our kids get all the equipment and education that they need. There will no need for parents to go begging and selling their soul just to get a vital piece of equipment. It will already be there. Therapy will be availiable when you want it, and the therapists will actually listen to you! Same goes for medical professionals. They will fully support you and will work with you to ensure your child has the best quality of life possible.

All siblings will be taken care of as well. They will get every opportunity possible. Because money is never a problem in WHS town.

Now all we need to do is find a place for WHS town to be. Of course, WHS town is only the start. It would be anticipated that alongside WHS town would be other towns where other families who have a child with a disability could live. It is important to support each other regardless of our children's abilities. And I guess you never know, we might even be able to be 'included' in regular society some day.

Aaah Utopia.

Guess I should snap back to reality hey.

Sunday, April 25, 2010

I know, I know

I am neglecting this blog terribly. I just don't seem to have the time anymore.
Braeden came down with gastro yesterday and has been the sickest he has been in his short life. Ryley has been crying with what I think are stomach pains, so I am tipping it will be his turn tonight.
I am constantly running on empty and I am OVER IT.
Thank goodness I am still breastfeeding though, not only is it comfort, but it is fluids as well. So Braeden didn't get dehydrated at all. In fact, he coped so well. Tough little bugger.

Wednesday, April 21, 2010

Did you know?

Ryley won't go to bed if he hears me on the Wii Fit? He must have bionic ears because I can barely hear it and I am standing in front of it.

Ryley can open the front door in the blink of an eye...If I turn my back for 5 seconds he is out at the front gate looking for cars.

Braeden calls Ryley "brother". Not Ryley. Must be 'cos he lives in da hood.

Braeden's favourite past time currently involves cleaning up dog poo. With his hands. AND the clothes he is wearing. "Good Helping Braeden".

Braeden now knows that as soon as it is dark, it is bedtime. Now, if only he stayed asleep...

Ryley loves going to the fridge and getting the cheese out (not holiday cheese, because it's not holidays), and bringing it to you in the hope you will cut him some. Not before he very carefully closes the fridge door, therefore setting a very good example for this little brother who doesn't believe closing the fridge door to be a priority.

I hate flies. Humid weather right now means an abundance of them.

Monday, April 19, 2010

The Zoo

Have you noticed that I seem to be hanging out with my WHS family a bit lately?
There is a certain kind of peacefulness that goes with being around people who get it. There is no having to cringe at what people say (or pretend that what they have said hasn't just really hurt you).  There is no having to listen to other people complain about things that we would love to have as our only complaint. There is no having to justify or explain anything.
It is just...well...easy.

So, when we decided on a spur of the moment thing to go to the Melb Zoo, we asked if Liv & Elliott and Mel, Luke & Ellie wanted to come too. Unfortunately, because of the very short notice, Mel & co couldn't come (NEXT time I will plan better-actually, I will just plan in the first place!!), but Liv and Elliott could!

We had an awesome time! Ryley of course only really likes the Oranguatans, but he loved having Elliott there because he had a buddy to watch people with. Braeden also loved having Elliott there, just because he loves him! Braeden had a ball watching all the animals and running around climbing on things. He did two laps of the reptile exhibit and spent an awful lot of time roaring like a Lion!

The great thing about the Zoo is that Ryley loves the sounds, the smells, the busi-ness and he does enjoy the glimpses of the animals...as long as they are doing something and not just sitting there!

We are thinking of Elliott though, who had a tonic-clonic seizure yesterday. Seizures truly do suck. It really isn't what he needs right now. So am really hoping he recovered ok and isn't in hospital right now.

Elliott and Ryley wrestling.

Braeden is doing the Makaton sign for Pig.

The little monkey that everyone is looking at had a baby on its back. So cute! Of course, check out Ryley. He isn't even looking at the monkey, but look at how happy he is!!


Friday, April 16, 2010

10 points

...to the awesome mother who forgot to send her child's Ketogenic Diet PEG feeds to school with him today.

I can't imagine why she didn't send them. I am fairly sure she wouldn't have been sleep deprived and there is NO way she would have been mortified to think she didn't send her child's only source of food with him.

I am fairly sure she deserves that mother of the year award.

Or was that CRAP mother of the year award??

Well at least she gets 10 points for being an idiot.

Thursday, April 15, 2010

Fluff...

You all know what fluff is.
Annoying stuff that means nothing, and has no real place in the world.
Well this is what this post is all about.
Nothing.

Well not nothing I s'pose. It will just have no theme. It will be a whole bunch of random thoughts.
So here we go.

I am so proud of Ryley for being student of the week this week.

I wish that he didn't wake at 5 am every morning because he wants to get up.

Have I ever mentioned how much I love coffee?

I suddenly remembered after reading this awesome blog that I am going to be going in a running race in 3 weeks and I should really do some running or something to train for it...

Braeden loves looking for bunnies at night. Every night. Not just easter bunny night. It doesn't help when the caravan park you are staying in has lots of them there roaming around. It doesn't help that a certain 2 year old now has his own torch and can open the door and go looking for bunnies.
Because it's dark that's why.

My house needs to be cleaned. Spring cleaned in Autumn. I really need to organise stuff. Finishing renovations would also help in the matter of cleanliness.

We have decided to try and save money and be really really frugal from now on. Everyone knows that the only way to get rich is to never spend a cent more than you need to. So that is my get rich plan. Really, it is actually very challenging to give yourself a tiny tiny budget and see if you can make it last. Seems as though we can quite easily actually. So for the next month at least, we are going to trial living off nothing and see how much we can save.

I am secretly loving the Wii. I can actually beat David at Mario Cart. He is really not good at it for some reason...or maybe I am just better I don't know. But he beats me at EVERYTHING else, so I am just going to bathe in the glory of winning, no matter how brief it will be.

So there is some fluffy fluff fluff. Enthralling hey?

Tuesday, April 13, 2010

Say...what?

So the attendent on Ryley's bus casually asks me this afternoon if we know that Ryley says "Morning" after someone says Good Morning to him.
Well...No...No we didn't know that!
I promptly said Good Morning to him and he mumbled what very much sounded like 'Morning'!!!
We are absolutely thrilled!
Cheeky little man, he gave us the biggest smile when we got excited.

The thing that was so nice about catching up with the Doecke's was just being able to hang out with another family who can share and understand what you are going through. Ryley nearly vomited several times while at the Doecke's house, but it was no drama at all, and we even managed to learn a new way to help divert Ryley from vomiting!! Just being able to chat about the future and what it might bring also really helps you put things into perspective.

And, Ryley has a new passion in life too.

The Wii...! We had an absolutely fantastic time playing the Wii at the Doeckes. So much so, that I am a little ashamed to admit (because I didn't think we would ever get one) that we are now the proud of owners of a Wii and Wii Fit. Ryley actually wouldn't go to sleep last night because he wanted to play the Wii.
What on earth has been started???!!!!
Guess it is very age appropriate though. And you never know, it could help him with his hand eye coordination and balance. The best bit of all though is the absolutely hysterical giggles from Ryley. That makes it all worth it.

Monday, April 12, 2010

PS...

It is cooooold!!!
As much as I am loving this cold weather, a bit more of a warning it was coming would have been good.
I am not ready.
I have no winter clothes (ok...I really just need new ones).
We don't have enough wood.
My fingers are frozen.

Best go dig my beanie and jacket out and brave the ever-so-fresh air. Braeden and I have ducks to feed.

Holiday Fun!

I don't seem to have much time for blogging these days. I guess I have an excuse given the fact that we have just returned from a lovely week staying in the Barossa Valley. For those that have never been there, it is a lovely wine region in South Australia.
The main reason we went over was to hang out with the Doecke family. Chris, Noel, Sarah and Rachael. Rachael has WHS like Ryley.
We had so much fun!!
Ryley still has his cough, but he was the first one up every day trying to get us out of bed. He loved hanging out with Rachael.
So here are some photos from our trip, there are more on FB too.

Saturday, April 3, 2010

Blogger Award

I have a few moments spare (have sent the boys out of the house to Bunnings) so will catch up on an award I recieved a while ago! A few of the bloggers I follow seem to be doing the same thing, so it has jogged my memory and reminded me I had one to acknowledge too!!


I recieved this award from Jen over at Jemikaan.

Here are the rules:
 

 
Thank and link to the person that gave you the award

 
Pass the award along to 7-9-15- however many bloggers who you have recently discovered and who you think are fantastic!

 
Contact said Blogs and let them know they’ve won

 
State 7 things about yourself.
 
So a big thankyou to Jen! It really does make my day when I get given a blog award, it means that people do actually read my blog, which is always nice!
 
So I will pass this on to the following people, because I just really enjoy reading their blogs. It's not to say that I don't enjoy reading all the blogs I follow, but these ones are just beautiful!
 
1. Whining at the world (I know you just got this award twice too E. but you deserve it again!)
 
2. Caitlyn Nicholas 
 
3. Sunny Side Up
 
4. Big Brother, Little Sister
 
5. I'm Thinking of Starting a Blog
 
6. Our Little Bugs Life
 
7. Lola Constance Evelyn
 
Do yourself a favour everyone, and have a look at these beautiful blogs! It doesn't matter if you are not into the blog awards, don't feel as though you have to pass them on!
 
7 things about me
 
Hmmmm, I should try and think of seven things about me that people wouldn't know hey? Well, I can think of a few seeing as we did this for a team building thingy at work on the last day of term!
 
  • I used to do calisthenics. I wished it was ballet, that was what I really wanted to do.
  • I can't stand when people whistle.
  • I did 3 years of a psychology degree then decided it wasn't what I wanted to do (I had 1 year to go).
  • I hated eating mushrooms with a passion until I was pregnant with Braeden. Then I started loving them.
  • I still haven't changed things over from my maiden name to my married name. So my drivers licence, bills, medicare card etc are all in maiden name!
  • I have lost 30kgs since having Braeden!
  • I am not afraid of public speaking, although when I was at school, I used to freeze with fear whenever I had to do a talk, or answer a question.

Friday, April 2, 2010

Good Friday Appeal

I think one of my first posts on this blog nearly 1 year ago was about the RCH Good Friday Appeal.
It is a day that really means a lot to us because it not only raises money for the hospital that takes care of Ryley, but it also highlights the great work that the medical specialists do to care for kids.
I have talked about us being 'frequent flyers' at the hospital before. This is not a nickname we ever wanted. But with it, comes a special belonging. We are always taken care of. Ryley is moved to the top of operation lists because of the Ketogenic Diet and his neuro team. When he is in hospital for things (op, appointments, tests), someone always comes to see him, whether they are meant to or not. If we are up on the 8th floor (which is where we do tend to spend most of our time), nurses and doctors will always stop to say hello (and usually remark how great it is to see him walking and growing!).
We have learnt many things over the years. Mainly not to ever compromise on what we believe is best for our son. We work alongside his specialists, we are Ryley's only avocates, we are his voice. And we make sure he is heard.

Last year the Good Friday Appeal raised a record 14 million! That was despite the Black Saturday bushfire appeal. What an amazing effort and it just goes to show how important the hospital is to everyone.
Even $1 will make a difference!

Ryley is currently sick. He has been having constant seizures now for 5 days. He has a terrible cough and isn't able to sleep because he wakes up vomiting from coughing so much. Hard work for all of us. We can't wait to hit the road and get away on our holiday.

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