A Blog About a Bloke-Living with WHS

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. ...

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.

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...

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 love...

...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.

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. ...

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, ...

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.

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.

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 jus...

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 wh...