Wednesday, January 27, 2010

Good news and meeting more of our WHS family...

Today we went down to the RCH for the first of our two days. It was meant to be 3 days at the RCH, but Ryley managed to get out of his dental appointment on Monday by throwing up everywhere in the car...we had to turn around and come home. One way to get out of it I guess..

This morning he had a renal ultrasound and then an appointment with his neurology team. Awesome news was that he now weighs in at a HUGE 17.3 kgs!! This is almost unbelievable for Ryley who has always been so tiny. 18 months ago, he weighed 10.7kgs at the age of 6 and 1/2 years. The best bit, is that for his weight, he is only a fraction off the normal weight charts for a small 8 year old!! He has basically NEVER been on the normal weight charts (apart from the first couple of months of his life!). Ryley's height is still way off normal charts, but I don't care!!

Plus, he can stay on the Ketogenic Diet, which is even better news really. I thought today we were going to start the discussions about weaning him off, but thankfully he can stay on.

Tomorrow he has a very full on day, but at least we won't have to go back for a while..I hope!

Today we also got to meet another WHS family. You can read about Ellie here. Ellie is so gorgeous!! Ryley just loved her. He was squeezing her hands and playing with her feet and they were making noises back and forth to each other in conversation! Who knows what they were cooking up together!
I love being able to talk to other parents with WHS kids. It doesn't really matter how old the kids are, just being able to talk about the things we face and having someone else who knows exactly what you are saying is awesome. It was great to meet Melissa and Luke and Ellie today!
There are some cute pics over on Ellie's blog. Ryley kept pulling his cheeky face for the camera and refused to look at us. Typical.

PS. Only 5 more sleeps until school is back. *Happy dance*

Sunday, January 24, 2010

Wee-ly?

After reading about Bron's Cooper this week and his recent decision to go to the toilet, I was a little more inspired to start encouraging Ryley again.
We have been running through the toileting motions with Ryley for years now. And we have had some successes here and there.
But, it seems, it takes a good dose of healthy competition to give Ryley the motivation he needs to use his potty chair!
Braeden is right in the thick of toilet training at the moment. Very much spurred on by his glorious return to daycare this week. By all accounts, being in the 2-3 year old room has given Braeden the extra motivation that he needed to get on that potty and do something! Up until now, we have just been following his lead, which we will continue to do. But he is at the stage of wanting to go to the toilet all the time, and is what has sparked the interest from Ryley.

So, to date, Ryley has used his potty chair several times over the past few days! We ask him all the time if he needs to go, and on the times he says yes, we have taken him. He has used the potty 90% of the time he has wanted to!
I don't think he is going to be able to wear jocks just yet (although he has tried some out), but I finally feel like we are heading in the right direction with him!

This is the potty chair Ryley uses:

You would not believe that the cost of one of these is $450. We don't use the straps at all, though Ryley loves playing with the long one.

I don't think we are going to be able to declare ourselves a nappy free zone just yet (not sure we ever will), but we are certainly heading in the right direction. And that is very exciting!!

Wednesday, January 20, 2010

Running challenge #1

Remember how I have challenged myself this year to run around the Lake?
Well, I started yesterday.
Running that is.
I managed 500 metres. How bad this that? But I guess I have to start somewhere.
David is pushing me and for the last two nights after work we have taken the kids up to the Lake. That in itself is a bit of a challenge seeing as the Toddler likes to walk around himself pushing the stroller and then Ryley cracks the almighty's because we are going so slow!
Both the kids love it when we run, but I am no where near fit enough to keep it up for very far.

Anyway. It's a start. And now I have started, I can't stop.

Monday, January 18, 2010

Hands in the air, rock-a-bye your bear...

Sing along if you know the words...

That song has been stuck in my head for the past...3 days...! The boys love it, and I, well, I don't mind it seeing as it is the only song both the boys can do the actions to. The second they hear the song start they jump to their feet and start doing the actions.
For most kids, like Braeden for example, it is easy to copy the moves (he can even do the La La La's). For Ryley though, he has been practising it for a very long time (try years, not just days).  He can almost do all the moves. It makes me so proud to see him up there in front of the TV (they are words you don't hear too often) alongside Braeden dancing and moving together. He absolutely loves it.

I figured something out the other day too. Well, not exactly figured it out. More like acknowledged it instead of ignoring it. I think part of why I get so cross with Ryley when he does his whingy noise is because I am frustrated. Sometimes I just wish he could express what he wants better, play by himself for a little while or not rely on me so much. It's not really him I am cross with so much as it's his disability I am cross with. I also know how incredibly frustrating it is for him sometimes because his body just won't do what he wants it to do.
When he is spending time with me, he expects me to help him with everything, because, well, I always have. So he knows that while I am there he can refuse to walk, go down the slide on his own, go on the trampoline on his own etc. He pretends he can't do things that he can actually do on his own. It is attention seeking stuff.
I know that all he needs is some extra attention, but it is extremely difficult to give him what he wants when I have Braeden wanting attention too.

Sounds simple enough, but the thing is, that Ryley actually gets an enormous amount of attention because I spend most of my time doing basic things for him like PEG feeds, dressing him, nappy changes, getting him a drink etc. But as far as Ryley is concerned, this doesn't count as attention from Mum. But it takes up a lot of my time. And doesn't leave much room for other things by the time I factor in breastfeeds and nappy changes and preparing food for Braeden.

Anyway, I have the solution, and it always works. I spend one on one time with Ryley and David spends one on one time with Braeden. Win win all round.
I spent all of Saturday just hanging with Ryley, well, actually he came shopping with me (which he loves) and he helped me cook. We went up to the Lake and played at the playground and watched people and cars and just chatted.

WELL.
The change in behaviour is unbelievable.
He still clings to me and expects me to do everything for him (today he refused to walk), but he was also happy to just sit and let me read the paper while he watched the dogs playing and Braeden tearing around on his bike.
Aaah...the serenity.
Well, for 15 minutes anyway!!

So I guess, for now, he is happy. While he is happy, I am happy. And Braeden...well he is always happy. He marvels at everything (today he realised that if he looked at the window a certain way it reflected and he could see me..he was so excited).

Two more weeks and school is back.
Not that I am counting or anything.

Saturday, January 16, 2010

Have I told you lately that I love you?

Coffee that is. Ha!

I seriously don't know if I could live without the stuff. Does that make me addicted to caffeine? Meh. Probably. I only have 2 cups a day. But I confess. They are always bought ones. From a proper store.
Well, McDonald's is probably not a proper store exactly...but they do have good cheap coffee.

Today was blood test day for Ryley. I hate blood test day. And it turns out that Ryley REALLY hated blood test day today. Because Ryley is on the Ketogenic Diet, he has to have blood tests every 3 months. This is to check that everything is ok and that his organs are all still working well and not starting to shut down or anything. His last few blood tests now, have shown higher than normal cholesterol which have started to concern his neurologist. If these tests show that they have elevated further, then we start the very real conversation about weaning Ryley off the Diet.
I am petrifried to be honest.
I dread the thought of Ryley ever going back to having all those seizures again.
Anyway, we will wait and see, I won't get ahead of myself and start panicking about nothing.
He has 3 days of testing coming up the week before school starts. Just the usual stuff, kidney ultrasound, bone density, carnitine bloods. As well as dental clinic and an ECG to check his heart is ok. Usually we try and squeeze it all in to one day, but this time we couldn't.

Today Ryley was scared of the blood test. He cried and squirmed and he went all clammy and pale. He was very distressed. It doesn't help that he has to fast, so he was hungry and probably feeling yuck too, his ketones would have been through the roof. I hate that there is nothing I can do except whisper in his ear and try and sooth him. He was fine as soon as it was over, and nearly ran out the door when we were finished.
He normally is ok with blood tests. Not sure why today he was so scared.

I have to laugh though. Here we were sitting in a waiting room full of people. They were all quiet as quiet can be.
And Ryley started his noise.
I saw a couple of people just stare at him with a frown on their faces. Others pretended not to hear it. I just told him to be quiet because we had to wait.
He ignored me of course.
So I just stared and frowned back at the people who were frowning at him (silently I was daring them to say something or make a big pointed sigh or something).
Kept me amused anyway.

At least after the blood tests I managed to get some coffee.
And I gave Ryley his tucker. He was most pleased.

Thursday, January 14, 2010

Best way to survive the holidays...

It's easy.
I go back to work.
David stays home with the kids.
Kids behave themselves beautifully.

Hmmmm. I am feeling a little miffed at the moment. I mean, when I am home with the kids, I plan outings, I break the day down into activity blocks, I make sure that they get lot's of attention...
David, on the other hand, takes a more relaxed attitude. He manages to take them to the bakery for coffee each day and he sits there and reads the paper. But! I protest! Doesn't Ryley get sick of sitting there, and doesn't Braeden start running amok after 5 minutes?? Clearly I am too stupid to realise that if you ply them with all sorts of cakes and sugary sweets at 9:00 in the morning that allows you have 20 mins or so of read the paper time. Which is largely uninterrupted apparently.
Well. Ok. What about Ryley's favourite noise? Oh no says David, Ryley doesn't do that noise for me.

Seeing as this is David's first time looking after both the boys during school holidays, I will spare him the rant that I can feel bubbling inside me. I mean, it has only been 3 days. Let's see how he goes next week hey?

Wednesday, January 13, 2010

Little B.



Ryley giving Braeden his present


Awesome! Farm Animals!


Wiggles matching game (he had to do them all at once, not one board at a time!)

Dear Braeden...

First of all, I cannot believe you are 2 years old today! Where did that time go? Anyone know? It has gone way too fast!
I hope you have had a wonderful day just hanging out with your big brother and your Dad (sorry Mum had to go to work, I wish I didn't have to).
I loved that you started saying 'birthday' today. I am pretty sure you knew what it meant..I mean, everyone knows that birthday really means presents! I am very glad that you liked your presents. How exciting!

I want you to know that you mean the world to us. We always call you the light of our lives, and this is because you bring such joy and happiness into, what can sometimes be, tough times. Often, I can't believe the things that you can do, or say, because I am just not yet used to having someone copy things after only seeing them one time! The speed that you learn things is unbelievable. It makes me so very very proud to see you loving the world.

You are a very kind hearted and gentle soul who just seems to know when people need a hand. I am so proud of the fact that you are growing up as someone who accepts people regardless of their abilities. I love that you help your brother sometimes, and I also love that you wrestle each other (and neither of you take any mercy either-typical!). What really fills my heart with pride is the fact that you have learnt lots of Makaton signs. You sign words and say them to Ryley in particular, it's like you know that he will understand you better that way.

So Braeden, I hope this year is lots of fun for you. I hope you continue to love life as much as you do! You set a great example for us all!! And I am proud beyond proud that together we still have a wonderful breastfeeding relationship. It has been, and still is, bloody hard work. But I know that one day in the near future you won't want breastmilk, and I am not quite sure how I will feel about that!

Your Dad and I picked this song for you:


The lyrics:
     MY WISH- Rascal Flatts
I hope the days come easy and the moments pass slow,

and each road leads you where you want to go,
and if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
and if one door opens to another door closed,
I hope you keep on walkin' 'til you find the window,
if it's cold outside,
show the world the warmth of your smile,
but more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
your dreams stay big, your worries stay small,
You never need to carry more than you can haul,
and while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I hope you never look back, but ya never forget,
all the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
and you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
and always give more then you take.
But more than anything, Yeah, and more than anything,
My wish, for you, is that this life becomes all that you want it to,
your dreams stay big, and your worries stay small,
You never need to carry more than you can haul,
and while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

Monday, January 11, 2010

PS...

The most bestest thing about being better and not having a throat that feels like it is closed over?

Coffee.

As in, being able to drink it again.

Back into it

First post for 2010.
It's not going to say much because I have a nearly two year old hanging off my arm trying to bite me.
It will say Welcome to a New Year.
It will say that my body did finally give up last week and I was bedridden for most of it with tonsillitis.
Me and David's one week off together was ruined by me being sick. I guess at least he was home and played with the kids while I lay in bed wondering why I was so sick. I forced myself to see a doctor and got some medicine and am bloody glad I did. I feel a lot better!

Lot's to catch up on.
I hope I can continue to improve the blog a bit and make it more interesting to read.

So, short and sweet.

The toddler has moved from trying to bite me to trying to turn the computer off.
(Ryley is actually behaving himself and is watching the Wiggles...).

Thanks for sticking around while I have had my little blogging holiday.

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