Lack of posts

Sorry I haven't been blogging. Life is too full on right now. We have an awful lot going on and it is school holidays of course, which means things are even busier (having a child who is having constant seizures again also doesn't help).
It seems there are quite a few of our WHS kids who are sick right now, so I hope that they are all better again soon.

The morning rush

As I was driving out of my driveway this morning, I wondered to myself how I did it.
I have an hour to do the following:

• 30 minute PEG feed
• Breastfeed
• Organise some kind of breakfast for Braeden (this of course depends on how much BM he has had and what his mood is)
• Shower
• Dress Ryley (or battle him more like it) and Braeden and myself
• Pack school bag (with all it's various equipment and don't forget swimming stuff)
• Pack daycare bag (pretty easy, I normally just have to add Meerkat and hat)
• Pack my lunch
• Put washing on (or if I was super organised, put it on the line)
• Feed Rex
• Change Ryley's nappy again (he always dirties it again)

All this happens before the bus arrives.
This morning, Ryley decided he was going to be a little bit naughty, and battled me a little more than usual. He even decided he didn't want to walk to the bus!
Braeden was ok until the bus left and it was time to get in the car. Then he threw a tantrum because he wanted to play with the puppy. There is no such thing as reasoning with a toddler. So I did what all good parents do and picked him kicking and screaming and carried him to the car.

He was fine of course once I had taken his hat out of his bag and put it on Ryley's car seat. YAY.

All this before I even get to work. And then I have to deal with whatever the day throws at me there.

Honestly, some days I just stare at my front door as I am backing out of the driveway and wish I could run back in.

Our new baby

So, we went out to buy some fish for our newly acquired fish tank.
We came home with Rex.
Mmmmmm. Not sure how that happened, but the kids love him, so do our other dogs. Mollie the cat...well see if you can find her lurking in one of the photos..she has already made it clear she is the boss of the household (not us humans).

You decide

If you were to look at this photo, would you think Ryley was sick?

No.

I didn't think so either.

I let Ryley stay home from school today. He just cried the whole time I was getting him dressed and I just knew he didn't want to go to school.

I don't know why.

I think he is just really exhausted and needed some time at home.

This picture was taken up at the Kricaks house. Makala had just driven Braeden down to see the cows and the calves. Ryley didn't want to ride in it, he wanted to walk. So he followed it all the way down and back without stopping at all!!! The kids had a ball.

I think all that laughter is exactly what Ryley needed!

"RYLEY! I said come inside!"

Uh-oh. Ryley is in trouble.
It is not often I hear David getting a bit cross with Ryley. But Ryley is very stubborn.
Tonight, he DOES NOT want to come in from outside thank you very much. He DOES NOT want to have a bath, and even though he is hungry, he DOES NOT want to have his PEG feed.
No, he wants to play on his slide all night.
I can't help but smile. This time last year, I would never have dreamed that he would be enjoying playing by himself so much that he doesn't want to stop.
And have a look at him squishing his little brother. Braeden seems to be loving it don't you think? Or, possibly not!
One of the nice things about Ryley having less seizures is the fact that his personality is well and truly shining through. He has such a wonderful sense of humour, he is cheeky, loves to annoy his brother and wrestle with him, and he has finally found things he can do without an adult to help him.
Seizures are so debilitating. I read in an article the other day that there are some seizure meds that actually make things like balance worse. So, sure, they may decrease the seizures, but they also cause other issues like headaches, problems with concentration, fine motor and gross motor coordination difficulties and memory problems.
I guess for Ryley, being on the Ketogenic Diet means that he doesn't have very high levels of medication in his system now. But I do wonder if some of his issues would disappear if we weaned him off the meds and relied on the Keto Diet alone? I wonder if we are brave enough to give that a go? Would our neuro team even let us?

You know what? I am actually counting down to holidays. Can you believe it? Yes, it is the same me posting. Maybe it is because we are going away for one of the weeks and I CAN'T WAIT!

PS. Thanks to those who become fans of the FB page! Lovely to have some new readers too! So to those ones, WELCOME!! It is lovely to have you.

Too much time on my hands?

More than likely.
Or perhaps it is more a case of me procrastinating as per usual.
Instead of cleaning the house, preparing a gourmet meal for tea and running 12 laps of the Lake, I decided to create a 'Fan Page' on Facebook for this blog.

So join it. And now I feel like writing 'or else' after that.
In all seriousness, it really is just another way for me to educate people about WHS, stay in touch with families, and a place for me to continue to raise awareness about issues facing families who have a child/adult with a disability.

Plus, not everyone blogs or comments, and it is just another place for people to ask me questions or respond to my posts.

Every now and then I get a glimpse of what it would be like to have an 8 year old who doesn't have a disability. And to be honest, it just about tears me in two.
For the most part, I don't give a rats about the differences.
Sometimes though, there is a reminder, a gentle nudge to tell me that my little big man will always struggle to keep up, that he tries and tries, but he just can't be like kids his own age.
I think the times that I seem to notice it the most is when I see him with a certain look in his eyes. I think HE is sad sometimes.

Yesterday, we went to play at the park. The park we go to is one I found that both the kids can use without my help. There were a couple of kids about Ryley's age there yesterday and he went to say Hi. They just kind of looked at him and then kept talking to each other. Ryley looked at me like he was about to burst into tears and I hurried over and redirected him to the slides. I could just tell he didn't get why they ignored him.

Sigh.

Breaks my heart.

Wrong side of the tracks

Most people who know me in real life or follow me on Facebook will know that we live 'in 'da hood'. Our street is a bit like a crime show. You know, always something happening and cops doing awesome things.
Just last night in fact, a couple of cool looking detectives were 'roughing up' the 13 year old next door over something he didn't do.
Nice one CSI.
Last weekend saw the burning down of the resident pedophile's house which, as it turns out, allegedly was set alight by himself because he didn't want to live there.
Word on the street too is that last week there was a drug bust on a house a few doors up over the road.
I certainly didn't hear that one.

You would think we wouldn't want to live here.
But actually, we do. For now anyway.
The thing is, we know most of our neighbours. The ones on either side we would do anything for, and they would do anything for us, and they do.
We have two big scary dogs (well ok, they bark and Charley looks scary-truth is she is so old she has no teeth, and Stanley is the one that would chew your arm off, if only he was brave enough to go near you), and we have almost all our big fences up. Plus me and David are scary people. We can yell loud. Especially at teenagers who piss us off.
The only time we have felt a bit concerned was one night ages ago when there was a brawl that had spilled out from the Bowling club up the road and our whole street seemed to be a battle zone. Cops didn't take long to get here though, so I was impressed.

So we live on the wrong side of the tracks. Although according to the lovely real estate agent I was talking to the other day, we could get a shitload for our house if we wanted to sell right now, though if we waited until the new shopping complex was put in up the road we would get even more. Well it doesn't take a genius to figure out that we would wait to sell until our house was worth more. Oh, and probably it would be a good idea to finish the renovations too. It might be worth more then too.

Awww...

I was looking through some old emails on one of my very old email addresses that I no longer used and check out what I found!! Pictures of Ryley when he was sooooo little!! Going from the dates, he is not quite 3 years old!!

Night Terrors

Braeden has just started having night terrors through the night. Bit scary really until I asked a couple of the girls at work who reassured me that they were normal.
The last few nights (which, incidently coincide with him sleeping in his big boy bed) he has woken up screaming and trying to either climb his chest of drawers, or try and hide under the little ledge on his bed.
I knew that he was still technically asleep, because he wouldn't even respond to his name despite his eyes being open.
Anyway, it is reassuring to know that it will pass, and to just let him go whenever he next wakes up.

The things you learn along the way hey?

Just 'cos

I haven't done a Just 'Cos for a while. So here are a couple of pics.

Yes, he is walking UP the slide. Why? Because he CAN!

Braeden stuffing his face as usual.

Those toys all go to bed with him at night too...

Who Cares?

According to the Carers Australia website there are approximately 700, 000 Victorians who are caring for a family member or friend with a disability, mental or chronic health illness or who is frail aged.
Can you imagine what the figures might be like on a world wide scale?

I have a child with a disability. By all accounts, he fits into the 'severe' category. I don't look at him as though he is a 'severe disability' which of course you all know. Nevertheless, it can be hard yakka sometimes playing that dual role of parent and carer.

So, what can carers do to take care of themselves?

• Share the care with family or friends. This isn't really an option for us. But for those of you who do have that kind of help available, make sure you communicate your needs. Accept offers of help!
• Take some time to care for yourself. This is so important, but also the hardest to implement. What did you do before you had your child with a disabilty? Can you find time to do that again? Can you find even 1/2 and hour a day to do something you really enjoy doing (go for a walk, read a book, gardening, cooking).
• Take time to talk to your partner/husband. This is incredibly important. Open communication is the key to staying on the same side. You both need to lean on each other when times are tough. As hard as it can be, try and make at least one night a week where you can do something special together. Respite is a great opportunity for this! If you don't have respite, at least have a special tea together, anything that will give you a chance to just talk.
• Stay in touch. As tempting as it is to shut yourself off from the world, sometimes it is really important to keep in touch with your friends. You discover very quickly the people that are going to stick by you and support you, so send them an email, a text message or even a phone call. Try and catch up with people at least once a month. It only takes a little bit of contact to make you feel connected again.
• Get to know other carers. Parent to Parent support cannot be beaten! Just talking to someone who can relate to what you are going through helps in so many ways. Other parents of a child with a disability are your BEST support.

Sounds all good and easy hey? For most of us who are old hands, we know all the 'shoulds' about looking after ourselves. Putting it in to practice is that hardest part!

So, what can people do to help us carers?

• Offer to help out. If you can, then help!
• Be a friend! Caring can be isolating, sometimes your company can make the biggest difference!
• Cook an extra meal if you can. If you know that your friend/neighbour is having a rough time bake them something. Take them some flowers from your garden and leave them on the letterbox. The smallest things mean the most.

Most carers won't accept offers of help. They don't want to burden people. We are a stubborn and proud breed!! I know that my friends do all of the above for me and we are incredibly lucky.

All of the ideas can be found on the Carers Australia website. I have poached most of them to put here!

Begonia Festival Weekend

It has been a long weekend for us this weekend because of Labor Day so, we have made the most of it!
I managed to get some painting done inside the house and David managed to lay a stormwater pipe (or something incredibly important like that). The boys have both spent time on the slide, playing with next doors puppy (and also make themselves at home inside at our neighbours!), and just lots of general playing. How relaxing?!

Today, was the Begonia Parade up at the Lake. Basically every year Ballarat has a Begonia Festival. The botanical gardens are beautiful anytime, but they look even better for this weekend.
David had to do traffic for the parade, so the boys and I headed up to have a look around while we waited for the parade to start.
We went and had a look at the little petting zoo thingy (what are they called again? You know what I mean, a heap of animals wandering around and kids can go feed them and pat them...). The boys LOVED it! Braeden was a bit unsure about patting the cows and goats at first, but Ryley (who is usually the unsure one) went straight up and patted them. Once Braeden saw his big brother doing it, he knew it was ok.
After the zoo thingy we went and waited for a tram. The trams run every weekend all year round but normally they cost to go on them. They are vintage trams, so old rattly things, and the boys had a ball. I forgot to take my camera so the two pics I took on my mobile, so not that great sorry!
Finally, it was time for the parade and just as the parade started so did the rain! Buckets of it actually! Somehow I managed to keep the boys dry, but I got soaked.
The kids loved the parade. So many different things to see. I can't believe that it was the first year I have ever actually taken them to watch the parade. The thing I loved the most was seeing people of all abilities taking part. It was wonderful to see!
So now the boys are in bed, the wood heater is going, and I am going to make a cup of hot chocolate and settle in on the couch and read.

And...just quietly because I don't want to jinx myself...Braeden has decided to sleep in his BIG BOY BED now because I bought some Wiggles curtains. It seems that was all he needed to convince him that his big boy bed is awesome. Who knew? He also takes about 6 toys to bed with him and tucks them all in with him so there is only the tiniest space left for him. But whatever works right?!

A New Look

Please bear with me while I update the blog with our new look! I am still chopping and changing a bit.
Let me know what you think!

Underpants!!

One day, they are gonna kill me for putting photos up of them in their jocks! But for now it is so cute, I couldn't resist! They are so proud of their underpants.

So proud in fact, that Ryley wee'd in his.

Check out Ryley's tiny legs!

Teething Toddler and more about stinky seizures

If you see me walking around with my eyes closed, bumping into things...can you wake me up please?
Braeden is getting his last two molars (which will then give him his 20 teeth that he needs for now) and he has been a nightmare child at night.
He has been waking every 1/2 hour. I kid you not.
It's not a peaceful wake-up-and-then-roll-back-over-cuddling-meerkat kind of thing either. It is more of a SCREAMING-CRYING-MUUUUUUUUM wake up call.
I try settling him with a drink of water, a cuddle, meerkat. Mostly it doesn't work. Mostly I have to breastfeed.
After my glowing post on breastfeeding just...er...recently, you would think I wouldn't mind at all.
Wrong.
I have been battling a sore throat the last week or so and swollen glands, body aches. It is from pure exhaustion. No other reason.
I am just a little bit over it now.

Ryley, on the other hand, is tired.

Exhausted from school. From life in general I think.

I finally decided to research pseudoseizures, which is what his neurologist thinks might explain some of his seizures that aren't organic.

Wish I hadn't.

Pseudoseizures are still seizures. But they are generally related to deep psychological issues that a person might have. The emotions that a person is feeling will trigger the seizures. So in Ryley's case, when he is sad, upset, angry, scared, he tends to have seizures. They are almost one of his coping mechanisms.

We know that Ryley has seizures. Organic in nature. That is, he has no control over them. How many of them can he control though? By that, I mean, how many can he 'bring on' so to speak?

If he was a neurotypical kid I would whizz him off to a neuropsychologist.

But he isn't.

It has taken ?how many? years to get my neurologist to even mention an actual name for these seizures that occur whenever Ryley needs to express an emotion.

Well fuck I don't know.

It probably can explain a lot really.

But the question is how can I help Ryley? How can I truly understand what is going on for him?

Things to ponder. Things to ponder.

In the meantime, he is loving his slide. Him and his brother are loving helping me cook tea at night. They are both in competition to see who can help me the most with the jobs around the house. And they are both doing a great job of washing themselves in the bath at night.

Busy kids

How do you keep your bored kids busy on the weekend?
Put them to work of course!

PS. It is Autumn! Yay! I am loving the cool blast of air we have had over the weekend!