Thursday, July 30, 2009

Quick Update

Just a quick update to let everyone know that Ryley is much better. He has gone back to school and they reported today he seems back to his old self, which is great to hear!
Fingers crossed we can all stay well for a while now!

Monday, July 27, 2009

Someday

Someday it will get easier.
There will be no more late night dashes to Emergency with Ryley in unbearable pain. There will be no working with doctors to figure out that pain and what is causing it.
There will be no more nights of no sleep.
There will be no more days with a miserable, groaning child who can't talk or even point to where the pain is.
There will be no more little man just putting up with it.

I hope that day doesn't come soon.

Ryley has been sick again with what we think (by we, I mean us and the doctor) is some kind of rotavirus gastro bug. Very nasty and it has really knocked him around. He is still not himself and has to miss school again, but he is on the mend which is a huge relief.

Having a child with a disability means you learn to just accept the things you can't change. Your child is more susceptible to any illnesses going around; that most people will never understand what it means to see your child in unexplicable pain and not be able to help. You learn that people try and compare their ill child with yours. They can't possibly understand the absolute exhaustion that goes with having no sleep. And by no sleep, I mean literally, no sleep. Everybody has different breaking points. For those that have a child with a disability, there is no such thing as a breaking point. You think you may reach it, but just as you get there, your child needs you again, and there is just no way you can walk away as they sob and reach out for your touch.

So you keep going, you nurse your child back to health...again.

So, we took the boys to Port Campbell yesterday. We all needed to get out of the house and we felt like we needed the sea air to fill our lungs and help us breathe again.
There is something so calming about the ocean. Although Ryley struggled, he did manage to enjoy the seagulls.
He has lost a lot of weight again and is still pretty sad. But hopefully he will be back at school again this week and we start counting the days until our holiday up the coast.

Thursday, July 23, 2009

The things I long for..#4003

I love to read.
Both my boys love to read.
In fact I caught Braeden sitting very quietly on the couch the other morning reading Spot Goes to the Farm.
At the moment, I am craving being able to sit down and read a good book. Something other than a Spot book, or a Mem Fox book or something with cars and trucks. It has been so long since I have managed to find the time to emerse myself in some Australian History, or the true story of someone who has had an amazing life.
I miss it. I truly miss that feeling of not being able to put something down, of not being able to wait until bedtime to pick up where I left off.

I guess someday I will manage to find the time again.
Until then, I guess it is tales of The Magic Hat, Where is the Green Sheep and Wombat Stew, with some Spot Adventures thrown in...and every now and then, when I am lucky and Ryley forgets about his schedule of books he will read, we get to read Bob Has New Boots...

I should be grateful I guess that the only time both my boys will sit down and stay still and concentrate forever is when we are reading books (and when Playschool is on). I wonder if they would notice if I started to read a bit of Henry Lawson to them?

Sunday, July 19, 2009

Sheep are cute, sheep are beaut, sheep are something curly...





"and when I take them into town I have to get up early, 'cos they never go the way I want, so I need some one to help me..I just give a whistle, and I call for Bob the Kelpie.."
Anyone else remember the song that Don Spencer sang? Or is it just me?!
They boys have had a most excellent weekend and especially enjoyed being out at Nanna and Poppa's out at Amphi. We helped bring a mob of sheep in from the paddocks to be locked up to be shawn the next day and both the boys took on the role of helpers.
Ryley jumped on the motorbike with Dad and was in his element as they rode over the hills. Braeden decided to just chase them.
Both the kids loved the lambs and each had turns patting them and trying to catch them.
I have only put a few photos on here. I will put more on my Facebook page.

Being outside sure does make for tired kids!!

Wednesday, July 15, 2009

The Little Things

Most days I am amazed by my children and the things that they have achieved during that day. Every night before they go to bed, I tell them how proud I am of them and how great it was that they did xyz that day. Then I tell them that I love them and we have lots of kisses and cuddles and the boys always 'headbutt' each other to say goodnight.

After school in the afternoon we have slipped into the routine of afternoon tea until 4pm, then playtime until 5pm. Tonight we were practising our ball skills seeing as Ryley chose to play with the ball (it is one of his MOST favourite things to do!). Braeden happily was putting a ball in a basketball hoop and Ryley and I played catch.
Only Ryley was actually catching the ball! This has been something we have been practising for YEARS! You can imagine the joy in my heart to see him able to do something that so many people take for granted. So often I hear people saying how they would like to appreciate the small things in life. Not many have the privilidge to actually be able to truly find joy and delight in the 'little things'. To see Ryley tonight achieving another milestone was one of the highlights of my day. Not only that but he absolutely loved pretending he was a bus driver as he led me around the house. SUCH GOOD FUN!!

Poor little Braeden has been battling with his teeth the last few days. Today he just sobbed his little heart out the whole way to daycare. He didn't even want any of his breastmilk before he went. His eye teeth have just cut through up the top and he was just miserable. He did enjoy himself once I left (typical!me crying as I drove away, and he was enjoying a book apparently), but it just upset me so much. His latest achievement is that he can sign as well as say 'Stop', 'More', 'Duck', 'Monkey', 'crocodile' and 'elephant'. Pretty cool really. We are working hard to teach him both the Makaton Signs as well as the word. So he will always be able to communicate with Ryley and other non-verbal children.

I really am such a lucky person. Despite the often very hard times, I am still always able to find something to smile about at the end of the day. We have such relatively short lives and I can't understand people who don't take the time to appreciate the things they have right in front of them.

Tuesday, July 14, 2009

Just 'cos..again





Ryley finally fits into a school uniform top! It is his 3rd year at school and the top is size 4 and still too big...but he can get away with it!
Braeden loves to draw and has even discovered that drawing on your face is just as much fun...and I know what Uncle Bede will be thinking when he sees the pictures...!

Monday, July 13, 2009

Hooray!

Finally.
School holidays have finished.
Ryley has gone back to school.
Much to his delight.
This morning he literally ran to the bus. I have never seen him go so fast! It is great to see. He gets so bored.
These winter school holidays are the worst! It is usually too cold to go outside and both Ryley and Braeden go stir crazy if they can't go outside. I don't blame them. I am the same.
So hopefully we are all back to normal routines now.
We just have to start getting everything organised for our road trip to QLD. Countdown is on!

Tuesday, July 7, 2009

Walk a while with me...see how long before you stop walking

Today went like this:

5:30am- Dad up and gone to work. Mum up, finished breastfeeding (for the 4th time) and into bed with Ryley to put him back to sleep.

6:00am- Ryley up. Having seizure after seizure. He can't stop.
Braeden up. Heard Ryley, realised Mum wasn't nearby, he bounces on the bed.

6:15am- Medicine time. Hope that settles the seizures. Why are they so bad today?

6:30am- Make Braeden some toast. Organise Ryley's PEG feed.

6:50am- After rearranging the furniture (Ryley hates it if we all aren't sitting the way we are meant to be) start PEG feed.

7:30am- Finish PEG feed. Switch off news. Start Playschool DVD. Head for shower with Braeden following.

7:45am- Out of shower. Braeden has put my towel in the bath on top of the wet facewashers. Towel now wet. Me freezing. Braeden slamming door because Ryley wants to come in. I open the door and make a dash for the bedroom and a dry towel.

7:50am- Braeden and Ryley now in bedroom. Playschool tunes still going-why am I the only one singing? Braeden pulling clothes out of draws. Ryley up on the bed looking out the window. Me, dressed. God knows what I am wearing, and luckily I don't care.

8:00am- Been up for not even 3 hours and am exhausted. Day has barely started. Change Ryley's nappy. 1st of many. Battle to dress his PEG site and to dress him. Still having lots of seizures. What is wrong today? He can't seem to help it. Braeden trying to put calmoseptine on his tummy too. Awww cute-but stop it! Why aren't they watching playschool?
Braeden has a mammoth breastfeed.

8:30am- Dress Braeden. Put washing on. Hunt around outside for some wood for the fire.

9:00am- I feel fuzzy headed. Oh yeah. Haven't eaten yet. Coffee will do. Pile the kids in the car and go get some coffee. Large. Skinny Cappucino. Aaah. Feel better,

9:30am- Going the long way home. Braeden falls asleep. What?! Oh great. Ryley loving the car so I keep driving. For like, an hour.

10:30am- Arrive home. Braeden awake and grumpy. Ryley annoyed we are home. Still having seizures. Get them some sultanas and let them go outside.

11:00am- Ryley annoyed. He wants to go on the trampoline. I tell him it is too wet. He flops onto the wet muddy grass and has seizures. Braeden tears around the yard chasing the dogs and tripping over. Next door neighbour pops his head over. Chat to him. Braeden finds an old mobile phone and starts a long conversation. Ryley wanders over but tries to use this opportunity to pull me over to the trampoline. I tell him no, later. He pushes me away in disgust and walks over to it and climbs up. Has seizures because no one else is up there with him.

11:30am- Lunch time. Change the boys out of their wet muddy clothes. Change Ryley's 2nd dirty nappy for the day. Organise PEG feed. Make Braeden lunch.
Ryley has seizures the whole time I am feeding him and makes his "whiney" noise. I don't have playschool on tv. I am not sitting in the right spot.

12:00pm- Make myself some lunch. Braeden eats most of it. Decide I will take them for a bike ride. As soon as I tell them, Ryley follows me around pinching me and pulling on my pants and having seizures and doing his whiney noise until I pick him up and sit him on the couch and tell him not to move. He doesn't listen. He keeps going. I finally get everything we need and I get them into the bike trailer.

12:30pm- Head up the road on the bike. Ryley not happy. He can't see any cars yet. Braeden crying. Ryley is pushing him. I keep peddling.

3:00pm- After riding up to the Lake and back (20kms) I am ready to fall in a heap. Boys are tired. Braeden helps me bring everything in. Ryley wants to go on the trampoline.
Snack time though. I get Ryley's PEG feed ready. Get a snack for Braeden. Good timing Playschool is on ABC1.
Ryley not happy. Having seizures. Doesn't want to be inside.

3:30pm- Ring David. Please don't be late. He is in Melbourne. Doing his best.
Take the kids outside and put them on the trampoline. I jump on. Ryley happiest he has been all day.

4:40pm- David arrives home. Ryley and Mum still on the trampoline. Braeden running around with the dogs.

5:00pm- Mum ducks in to the study to check her emails. Closes the door. Ryley at the door trying to get in. Dad and Braeden start cleaning up. Mum decides it is take away for tea tonight.

5:30pm- Kids in the bath. Mum goes to get McDonalds.

5:45pm- Mum back home. David finished washing kids. Mum battles again with Ryley to get dressed.

6:00pm- Mum and Braeden sit down to eat together. David takes Ryley off to bed to give him his PEG and read a story.

6:20pm- Ryley sound asleep. Braeden still up and mucking around.

7:45pm- Braeden asleep.

8:00pm- Mum finally checks her emails and writes this mammoth post. Then off to do washing and get organised for tomorrow.

Saturday, July 4, 2009

Not be able to speak is not the same as having nothing to say

Ryley is frustrated at the moment.
He is bored.
He is expressing his frustration by pushing the limits, and trying to get at his mum as much as possible.
Pretty typical for a 7 and 1/2 year old on school holidays I would think?!

The difference is, that he can't actually tell me what he is thinking in words. So he tells me in actions, stinky seizures, and his 'whiney' noises.
Ryley is absolutely fantastic at handing leading and putting my hand on what he wants, and he also occasionally uses his picture cards. He also understands a multitude of makaton signs and can even do some basic signs!
The best way to get Mum's attention?
Seizures.

For those that don't live with a child who has seizures, it is probably impossible to even begin to imagine how someone could use seizures to get attention. But believe me, it is most definately possible.

Ryley has myoclonic seizures. These are very brief jerking movements. Mostly it is his whole body that jerks, and they generally last for 2-5 seconds.
And he can bring them on himself.
How?
His seizures are connected to how he is feeling. Sometimes they are completely involuntary, and these ones are generally when he wakes up in the morning, and when he is going to sleep at night.
When he is tired, he seems to have more too. These tend to be involuntary as well. His brain and body are tired, so neurologically, his body just reacts by 'misfiring'.
But when he is annoyed, frustrated, feeling sick, scared, angry, worried, he can also start having some myoclonics. His body is very sensitive to how he is feeling, and that causes chemical changes in the brain, which in turn sets of a series of 'misfirings', thus, seizures.
Make sense?

So when Ryley wants to gets my attention because he is bored or cross because I am not doing what he wants, he will hold onto my pants, or sit at my feet and have seizures until I take notice and do what he wants.
It is his own way of having a little tantrum.

What do I do?
I talk to him. Ask him what he wants. Get him to show me. Most of the time he wants a book or to go outside or needs help with something. I try and not let it get to the point where he 'tantrums'. Which means he basically has my full attention all the time.
At the moment, he is not impressed because he has to share my attention with Braeden because it is school holidays. It is too cold to go outside much, and he misses his school routines and being so busy. The slower more relaxed pace of the holidays just doesn't suit him.

People often ask me how on earth I can understand Ryley when he doesn't talk.
It's easy most of the time.
I know him better than anyone else.
But sometimes, I don't know what he wants.
But just because he can't talk, doesn't mean he can't communicate in other ways. He is a very strong communicator, and as he gets older, we will work to find an alternate communication device that suits him.
But right now, he still has plenty to say.
Once people spend some time with him, they soon realise that they can have a 'conversation' with him.

So just because someone can't talk, doesn't mean they don't understand you and it doesn't mean they don't have anything to say.

Wednesday, July 1, 2009

I found it!

After searching and wondering for the past few years, I have finally found Ryley's old blog in the web archives. So I am going to spend some time (hopefully!) linking it in to this one if I can. At the very least I can now print it all out anyway!
I am so relieved.
I thought it was gone forever!

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