A Blog About a Bloke-Living with WHS

What if? I mean, what if there was no seizure activity. What if there was speech. What if Ryley could do all the same things as other kids? Sometimes I wonder how Braeden became such a helpful beautiful little person. How does he know when Ryley wants his drink? How did he learn to push the chair over to the bench so he can reach all the things he isn't allowed to have? Today, I had a fairly emotional visit with a family and almost straight after I presented a session about Chronic Sorrow and Family Centred Practice. So I talked about grieving and readjustment and how all families have different ways of coping... And then I thought to myself: When did I first realise that Ryley was never going to be "normal"? It seems like an eternity ago. And I actually can't remember. I wonder if these means that I am so well adjusted that I have come way too far to even think about it. Or, does it mean that somewhere along the way I have blocked all of that out of my mind? Probabl

I forgot to say this morning that I bought Ryley a new pair of jeans yesterday which were a size 4. And for the first time EVER. I haven't had to adjust them at all. He just put them straight on!! How exciting!!!!!!

Am finally getting excited about our road trip!! I have everything organised now and am counting the sleeps (only 5 of them left) until we leave for sunny QLD. As I write this, it is hailing outside, so to say I am hanging out for some warm weather is definately an understatement! We have had a very busy weekend. Nan and Grumpy came to visit and Ryley showed his appreciation by vomiting. Both the boys have shocking coughs, but are otherwise ok. I am hoping the warm weather might help clear up their chests a bit and we might all get some much needed sunshine on our bodies! Can't wait to see all our WHS friends!

-My Saturday morning sleep-in. My beautiful husband hasn't had a sleep-in for years, but because I am up through the night to Braeden, he figures I need an extra hour or so on a Saturday morning. No wonder I love that man! -Listening to Ryley stomp stomp stomp through the house, as he moves from looking out the window, to his bedroom, to the back door. I never thought I would hear that sound, and it truly is music to my ears! -Listening to Braeden dragging a chair from one end of the house to the other so he can climb up and open the door to get into me. That kid has such amazing problem-solving skills. It is a bit scary really! -Coffee. Having it brought to me on a Saturday morning is just so nice. -Quiet. I love that David takes the boys out for a couple of hours on a Saturday morning so that I can clean the house without them 'helping'. -Holidays. I am now just about completely organised for our holiday away and I can't wait for our road trip!! So much of Australia t

Sometimes living in Ballarat just sucks. I mean, is it really that difficult to ring and order Ketocal. Yes, I understand you "have never heard of it". Yes, I understand you have never heard of the Ketogenic diet. Yes, I do need the Ketocal. It is how my son stays alive. As in, it is his food. Given that out of nowhere the procedure for ordering Ketocal has changed, with no warning or explanation other than-"oh it's on the PBS now so you have to order it yourself"; and given that the prescription I was sent didn't even have the doctors details on it (therefore looking like I had written it myself), why on earth did I expect the hospital pharmacy to even look half interested in helping me? Not only did the woman look at me like I was an alien (and true, I do look strange, just ask one of the local paediatricians!), but she screwed up her and nose at me and said "Oh no. We don't order things like that". Good. Well. Ok then. So I went to my normal

You know when you are really looking forward to a weekend..there is going to be warm weather, you have things planned to get done, you have a party to go to, and good friends to visit...then you get sick. As in, stay-in-bed, not-able-to-get-up sick. Well that is pretty much what happened this weekend. Not only was I sick, but the boys we up both nights coughing, Ryley vomited Friday night... Crikey! I am hoping that we have now gotten over all of our yuck viruses and can now be fit and healthy for our trip away (I can only hope anyway!). At least David got our fence and gates up. I think nearly all our neighbours have told him what a good job he has done and it isn't even finished yet! It does look great though. Now to put the razor wire up...Just joking! I can report that I have finalised all of our accommodation for our trip finally. So that is one weight off my mind. Now I just need to get the car serviced, new tires and organise what we are taking..easy..right?! Weather watch:

I am tired (nothing unusual), stressed (again, nothing unusual) and am fighting a cold/cough croup virus thingy. Blah Blah Blah poor me. It is only 3 weeks until the WHS conference and that means only 2 weeks until we leave for QLD. Do you think I am organised? Errr...that would be a big fat NO. Seeing as I am taking leave from work at the worst time of the entire year, I am trying to desperately fit in four weeks of work into two weeks. Which loosely translates as working from home on my days and nights off. In amongst that I have to organise accommodation for our trip up to Tweed Heads (mostly all done, just a couple more nights to go) and as an added stress, I have to organise respite so that Ryley can be taken care of while we attend the conference. I have found that process to be quite difficult and it is STILL not finalised, as I am battling to get a hold of the worker. *SIGH* You know, it really is all too hard. As sad as it is, I am not sure we will do this again. It has been r

It was slightly warmer this weekend so we took the opportunity and stayed outside for most of the two days! Saturday we spent the day making a start on our front fence and Sunday we went out to Amphi because a heap of trees had fallen down around Mum and Dad's which we needed to clear. We also had a little bonfire. OK. So maybe not so small. Both the boys had lots of fun and were very tired. Although, as I write this, it is 8:30pm and Braeden is still up playing.

Yes, this is my 18 month old caught in the act of trying to finish the picture he started this morning while I was out putting Ryley on the bus. Yes, he doesn't care that I have caught him. Yes, he will sneak back there when he thinks I'm not looking. *Sigh* Lucky it isn't in the new extensions part is all I can say!

For those that pray, please keep one of our precious little WHS people in your prayers this week. Allissa Carbone from Western Australia is currently in ICU on life support. To Sami, Leo, Sophia and Allissa, please know that we are all praying for you and hoping that Allissa gets well again soon.

Last night I started the Makaton training course that my work was offering to parents and people who work with children with disabilities. I went along for a couple of reasons: 1. Because of my role as Social Worker/Family Service Coordinator, and 2. Because I really wanted to learn the signs for my own personal use. I am lucky that the Speechie running it let me slip in! So what did I learn, and what the hell is Makaton anyway? Makaton is an alternative form of communication that is mainly used to assist children with disabilities. It is not often used as the main form of communication, as the idea is that children can either use speech or some picture cards or even a communication device. Speech is such a difficult motor task and takes a lot of planning. Not only does it require your brain to send the messages to your mouth, but you also need your lungs to work, your tongue, your jaw and your mouth. Hard work when you have low muscle tone, seizures to contend with, and a body that do