Archive | July, 2009

Finding Nemo…

31 Jul

Finding Nemo

BC has never really had a teddy or toy that he’s really, really loved – I mean the kind of toy that you drag around with you everywhere you go until one of his eyes pops out or it loses half its stuffing.

Until now.

About 2 weeks ago, BC watched the film ‘Finding Nemo’ for the first time. I’ve had the video in the cupboard for a while, but I thought it might be a bit scary for him. So a few weeks back when it was raining outside and we had nothing on, we made some popcorn and sat down together to watch the film. And then watch it again. And we’ve since watched it almost once a day (and it probably would be more often if BC had his way!).

He wasn’t at all scared. I thought the opening scene and the shark might throw him, but no. He loved it, everything about it and he still loves it.

Little Bean loves it too. He’s taken to walking around the house chanting ‘Nemo, Nemo, Nemo’ and his other favourite line in the film when Nemo tries to say ‘anemone’ with some difficulty.

Last week I was trawling through an op shop (as I am very prone to do when I have a few spare minutes ;-)) and I found a very small plastic Nemo toy – the sort you would play with in the bath.

It cost 50c.

And has become BC’s most PRIZED possession.

Nemo has come everywhere with us since I gave him to BC. He stayed in his pocket while he went horseriding. He sat next to him at his early intervention group therapy session. He went to kindergarten (although I did manage to convince BC to keep him in his bag in case he somehow got lost in the chaos…). He sits on the table when BC is eating (and occasionally of course gets ‘fed’) and naturally, he sleeps next to BC every night.

Except for last night.

Nemo was missing.

There were promises of his favourite chocolate biscuits, promises of watching the film (a very, very special treat at night) and even promises to buy a new Nemo in the morning (although I had no idea where I’d find another at short notice).

But no. Nothing would stop the flow of tears or the wails of  ‘I want my Nemo’.

So mum, dad and Aunty J spent most of the night finding Nemo.

It didn’t help that BC was a bit sick. He’s had a cold for the last few days so he was already feeling a bit miserable and vulnerable (he’s a super grump when he’s not well).

I knew that he was in the house because BC had stayed home all day – which means so did Nemo.

We searched everywhere. And I mean EVERYWHERE. We retraced BC’s steps around the house, all the places he’d played, looking in all the games boxes and toy shelves. But no. Finding Nemo was proving to be as tricky for us as it was for his dad in the film.

Finally though, a breakthrough. At the last hour (it was nearly 9pm and BC still wasn’t sleeping – apparently that was impossible without Nemo!), I remembered that BC has come into the laundy earlier in the day to help me with the washing. He really enjoys putting clothes in the machine, then the powder and then pressing the buttons to start the load.

But silly me, I had forgotten that he’d been in the laundy today.

So into the laundy I went. I searched in the machine, in the laundry basket, even in the freezer (you never know!). And then at the last minute I checked in the recycling box and there, between a plastic juice bottle and a cornflakes box was Nemo, smiling up at me, clearly very happy to be found.

Nemo

Calm was restored to the house and we were all able to get some sleep.

And yes, I will be on the lookout today for an ‘emergency’ replacement Nemo, just in case he goes missing again!

GET OUT OF MY WAY!!!

26 Jul

A couple of days ago I mentioned that BC has been doing a LOT more walking in his walker.

Yesterday we went to our favourite trash and treasure market for the morning. It is a very popular one and always quite crowded. Despite the crowds, BC insisted on walking the whole time.

Which is great, except there’s one thing I haven’t yet mentioned about his walking. YES, he can walk for a lot longer and a lot faster than the past, but he really still hasn’t mastered the art of walking straight.

I don’t think it’s only a matter of control, but also a matter of being a 4 year old with places to go and things to see  and those things aren’t necessarily straight ahead.

So he ziz-zags his way along, making sudden turns and direction changes with very little warning to anyone nearby.

This is not a problem when we are in a shopping mall when there aren’t many people around and there’s lots of room – but quite a problem when we are at a very crowded outdoor market with lots of prams, dogs on leads and people stopping to chat with friends in the middle of the path.

After several near misses as people just managed to jump out of his way at the last minute (all, I must say, a little surprised, but very good humoured about it!), I pulled BC aside and we had a little chat. I explained to him that it wasn’t up to everyone else to get out of his way. That he had to slow down, watch where he was walking and try to walk straight.

It turns out, that in typical 4 year old fashion, the only part of my little chat that BC heard was ‘everyone else get out of the way’.

So as we continued to walk, he ploughed ahead, at full speed, zig-zagging like crazy,  – the only difference this time was that he was shouting, at the top of his voice ‘GET OUT OF MY WAY!!! GET OUT OF MY WAY!!!’ as people leapt left and right to clear the path for him.

I know I should have been cross, very cross. But honestly, the sight was hilarious and the result was that I just couldn’t stop laughing and, never a fan of being stuck in crowds, I had an incredible urge (which I only just managed to keep in check) to join in the shouting with him.

We certainly got to where we wanted to go much faster.

We will continue to have this chat about walking carefully and straight in the future, hopefully with some success. But just secretly, I think it would be handy for us to keep in reserve a special ‘get out of my way’ walk, just for when we really need to get through a crowd quickly ;-).

Mid-year review

23 Jul

Well, it seems the tummy bug in BC’s tummy has gone. I am pretty sure, seeing as the first thing he told me this morning was that the baby in his tummy really, really needed one of the chocolate biscuits that we made a few days ago ;-).

On to other news, we had BC’s mid-year review at his early intervention centre on Monday. I was really pleased to see that he has achieved a few of the goals that we set out at the start of the year (making better use of both hands when doing activities, climbing into the car seat by himself and improving his ability to hold a pencil and attempt writing his own name). I was also pleased to see that we have set into motion quite a few of the other goals – such as the swimming/physio sessions, more focus on improving his use of AAC devices and using ‘Prompt’ to improve his speech/oral awareness and getting him to do more walking in his walker.

The only thing in the plan that we HAVEN’T done is look at getting him a modified tricycle, which we’ll hopefully be looking into soon.

We also spoke quite a bit about the need for him to have a more substantial voice output device. I mentioned a little while back about how excited I was about the new iPhone AAC application, and his speech therapist agrees that this will definitely be a useful tool for BC in the future. But not the immediate future. After mulling it over for a few weeks now, what the iPhone app has really taught me for the shorter term is that we DO need to get BC a more up to date device.

I mentioned in that earlier post that I believed a newer Dynovox device would set us back $7000. I was WRONG. Try $15,000. Wow.

Fortunately, the government will put in $4,500. UNFORTUNATELY, if he were already at school they would put in $7,000. I absolutely fail to see why there is such a disparity in this amount. Especially given the main reason we want to get the device sooner rather than later is so BC will already have confidence using the device when he gets to school. Makes a lot of sense to me! There will be a letter regarding this, be assured!

There are other funding bodies that we can apply to for funding. And we will be. I wish we were in a position to just find the missing $10,000 under the bed, but I am just quite sure it’s not there.

We will be aiming to hopefully have the device by the start of next year, to give BC a full year using it before he starts school.

THIS is the device we’re looking to buy (and in this colour, which was BC’s second choice after I suggested pink might not really be best):

dynovox VYou can find more information about it HERE.

I am excited. I think it will be great for BC.

We also got a new little tool to try and help with BC’s oral awareness. It looks like this:

Oral Screen

It’s called an ‘Oral Screen’. The idea is that you place it between the teeth and the lips. In order to keep it there, you need to keep your mouth CLOSED – which is something that BC has a lot of trouble remembering to do. An added benefit is that with his mouth closed, his saliva can’t escape, reminding him to swallow.

I knew that he would either really love it or hate it. Fortunately, he LOVES it.  We play with it together, with him trying to keep it in his mouth (by keeping his lips together) while I try to pull it out. He thinks it’s a hilarious game. He’s also taken to playing with it, trying to keep it in his mouth and wriggling it about while he’s watching TV. It seems to provide him with some really good sensory feedback. All good. A handy little tool to add to the repertoire of therapy that just doesn’t feel like work ;-).

There’s a little more info HERE and page 13 of this excellent ‘Saliva Control booklet‘ from the RCH in Melbourne has a couple more pictures of an Oral Screen in use.

So there you go. All in all, it was a really positive review and we have a few more goals to focus on between now and the end of the year.

And as a final proof of how well he’s doing, on the way home, we needed to stop off at the supermarket and do some shopping. For the first time EVER, BC walked the whole supermarket with me. I didn’t have to slow my pace once for him to keep up. He helped take some things off shelves and put them in the trolley. He had a ball. I am so thrilled with his increased endurance and confidence with his walker. The ‘Stroller’ that we got for him earlier this year, spends more and more time tucked in the boot of the car. Unless I know we’ll be doing a LOT of walking, I am now confident he can do it on his own, which is great.

‘My baby in my tummy’….

21 Jul

As I mentioned earlier, I told BC that I was pregnant fairly early on, because I was just so unwell. And I often needed to tell him that the baby in my tummy was growing and that was making me feel a little sick.

I should have known that it wouldn’t take long until….. the baby in HIS tummy started to make him sick.

Enter ‘Hogay’. Hogay is the baby in BC’s tummy who gives him a tummy ache whenever it’s time to go somewhere he doesn’t want to go, or to do something he doesn’t want to do.

Only, this morning it’s really NOT Hogay who is giving BC a tummy ache. Poor little guy has picked up a tummy bug for real. I hope it’s one that passes quickly. Not mcuh fun for him at all.

Inspiring.

10 Jul

Thanks so much to everyone for their warm wishes on our big news. It is exciting. And daunting. And has been pretty much dominating my life  for the past 2 months as I’ve been so unwell.

I can’t tell you how relieved I am that the morning sickness is now easing. Not fun.

Hopefully I’ll be back to blogging more frequently.

For today, a quick post -a link to an article about a truly inspiring Australian.

And from him – paralympian Kurt Fearnley – who is soon going to crawl the Kokoda track – this is the quote of the week:

In February, he visited a refugee camp to speak about life with a disability. He spoke of his family and how important it was to encourage a child to believe.

“If they get their kids to feel confident, anything can happen, they can do absolutely anything on the planet and to see these mums’ and dads’ eyes open and then start crying, it was incredible.”

OGOL IS COMING!!!

7 Jul

So, I bet you’re wondering. WHO is Ogol?

I won’t leave you in any suspense.

THIS is Ogol:

Ogol01

Ogol is the much wanted FINAL member of our family, who is currently living it up in my tum and who has been giving me the worst morning sickness I could have imagined.

Why Ogol? Well, you can thank BC for that.

Because I have had such terrible morning sickness, I didn’t wait to tell BC that I was pregnant. I had to be able to explain why mum couldn’t play, why mum wouldn’t take him to the park, why mum was lying on the couch, or in bed AGAIN. OR why mum was throwing up in the kitchen sink (sad, but true)….

I told Bean too, but he’s not that interested. If it’s not a Wiggle, or a Clue (as in Blues Clues), if he can’t draw on it or climb on it, well then he’s just not that fussed ;-) – I am sure things will be different when the baby is here!

BC named the baby Ogol. I don’t know why. But it’s cute. And it’s stuck.

He asks me at least once a day “How’s Ogol?” and he was thrilled to see the photo above that I just brought home an hour ago following my 12 week scan – which in fact turned out to be an 11 week and 4 day scan as my dates were a little out.

I was very nervous about the scan. Terribly worried that given the horrible morning sickness I’ve been having (which I didn’t experience at ALL with the two boys) that maybe I was having twins. Or triplets. Or Octuplets! Or Or…..

Suffice to say there was a loud, audible sigh of relief from me when the sonographer could quickly confirm that there was indeed, just one little heart beat racing in there.

And racing it was. In perfect range for his/her age. Everything else was also in perfect order. She even gave Ogol’s brain an extra look over after I told her I had a child with CP.

But what a wriggler! Ogol barely stayed still the whole time of the scan. A mini acrobat in action. It was amazing to see.

We need to wait 3 days for the ‘official’ scan results, but the sonographer assured me that if she’d seen anything untoward today, she would have informed me.

So. There you go. Ogol is coming. We are thrilled, excited but also, just a little bit terrified. Baby no 3 will definitely complete our family, but he/she will also keep us very, very busy!!! ;-).

Excited!

5 Jul

One of the things that excites me when I think about BC’s future is the part technology will be able to play. It excites me that with so many developments taking place RIGHT NOW,  in the future there will be more and more great products and innovations that will make life easier for my lovely boy.

Most recently, I have been thrilled to learn about a new AAC (Augmentative and alternative communication) application available on the iPhone.  It’s called Proloquo2Go. Thanks to Gina from InkyEd for telling me about it!

At the moment, BC has a ‘Dynovox Minimo’ that looks like this:

Dynovox Minimo

It’s big. It’s heavy. It’s clunky. And it’s not particularly reliable. We have had several programming and other errors with it and to be honest, we just don’t use it that much.

It’s true that it’s an outdated model, and the newer Dynovox  devices are lighter, more reliable and more technologically advanced. BUT they also have price tags to match. Around AUD $7,000  last time I looked. Hhhmm.

So naturally, I have been very excited about THIS new iPhone application. I LOVE the idea that in the future, BC wouldn’t need to carry around an additional device. I love the thought that if he’s having trouble conveying something to someone, he could simply pull his phone out of his pocket and quickly and easily say what he wants to say.

The application is NOT perfect. For a start, BC has no way near the fine motor control to accurately press the right icon on such a small screen. A keyguard (as yet undeveloped, but hopefully to come in the future) would definitely help resolve this problem.

I also would worry about him dropping and damaging the phone itself. So a bodyguard of some sort would also be great (or even better, a durable ‘outdoor’ iPhone model?).

Also, I look forward to a bigger range of ‘voices’ on offer.

So it’s not perfect for us, just now. BUT Proloquo2Go costs less than US $200 and a 32GB  iPhone would set us back around AUD$1,000 – so all up, considerably cheaper than a Dynovox!

For now, we have downloaded Proloquo2Go on to BC’s dad’s iPhone. And we are enjoying playing with it. We’ve already made new sets using photos of all the members of our household and close family and friends. We’ve altered some of the other entries because they are particularly US focused (ie ketchup, jello, baseball shoes and ginger beer). The editing process is very user friendly. We’ll continue playing with it, adding and adjusting and letting BC feel his way around it.

When BC’s dad’s phone contract expires, and he upgrades to a NEW iPhone, maybe this one will become BC’s. I hope so.

The potential is there. I am so excited about what gifts future technology will bring!

In case you’re curious, but have no idea what I am talking about, check out this video from the Proloquo2Go website:

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