Wednesday, December 30, 2009

Yay Us!

So we are back from our camping trip.....and have brought all the holiday lethargy back with us. What we haven't brought back is the tummy bugs and flus! Yay Us!!! All healthy again here. On the flip side of that, my laundry looks far worse than the photo in the last post. We had fantastic weather for camping but as we were driving away from our campsite, the rain set in and the further south we drove, the heavier the rain came down. So I have been gradually trying to work through the washing pile from camping in wet you can probably imagine, it's not moving very quickly.

Anyways...I have stories and photos to share.

Before we left for our trip, Ayla finally realised she could reach through the playpen 'protecting' our Christmas Tree and pull off Baubles....and tinsel, and shred the fake branches, and pull the tree over.....Oh and look, Mummy put that Bauble back for me to rip off again...Cool. Yep, lots of fun and games to be had there. Trust me, that tree is not staying up til New Year's Day. It comes down tomorrow!

We have had 7 days of camping in a gorgeous spot at Burrum Heads. It's a tiny little seaside town that is supposedly part of Hervey Bay. The park was a bit neglected but we managed to snag some pretty reasonable camping spots and it was just a short walk across a road to go swimming. And yes, swimming made up the majority of our day. Ayla could see the water from our tent door and while I was tidying each morning she would sit at the door giving her very own little version of a sign for swimming and then squeal and giggle until we put our swimmies on. Our days went something like this.....wake up, have breakfast, go for a swim. Come back, tidy up, have morning tea, go for a swim. Come back, have a nap, wake up, go for a swim. Come back, have lunch, play in a bucket of water til whingey, go for a get the picture. Ayla was in heaven.

There was one major drawback......SANDFLIES! Ugh. I absolutely will not use chemicals on anything to do with my living space, myself or Ayla....but camping we didn't have a choice. We had to resort to the good ole Dettol and Baby Oil remedy...only I just couldn't commit all the way and insisted on paying $15 for a tiny bottle of almond oil instead! I know it sounds weird but it does actually work. You mix them together 50/50 and smother yourself in it...the Sandies won't touch you! Promise. The worst hit with the bites were Ayla and Mum and it appeared that Mum might have had an allergy to them so she had to resort to antihistamines as well. And that kinda contributed to her wanting to go home after a few days...Sorry Mum. Majority rules and we stayed :)

I know that up and down the coast of Queensland was rain, rain, and more rain but we actually had perfect weather. We had a few showers and storms in the late afternoon and evenings but the days were fine and hot and perfect for swimming. We won't talk about the fishing....needless to say that Steven and Dad's record remains intact. Good onya boys!

On the way home, we stopped in at Steven's Mum's house to visit her and his sister and Ayla's cousins. Ayla slept for most of the afternoon but it really warmed my heart to see her 2 cousins actually wanting to interact with her. A lot of kids their age can't really be bothered with her and considering we only see Bridee and Aaron once or twice a year, I was really chuffed that they actually asked if they could give her a cuddle. Awwww....

So that's us! Hope your Xmas hols were just as lovely as ours and that you all stayed Happy and Healthy.

We wish you all an amazing 2010. I know lots of people that have really done it tough in 2009, so here's to a much bigger and better year in 2010. May all of your dreams, wishes, ambitions come true and for those of you who have littlies like Ayla....May your little ones reach milestones that make your happy tears flow.

Thursday, December 17, 2009

Deck the Halls.....

Deck the Halls with Vomit and She-ets, fa la la la la la la la la.....

3 more sleeps until our camping trip to Burrum Heads and all is well with the world....Can you hear my sarcasm? Steven's down with a flu, Ayla has picked up a vomitting bug from her little friend, I'm feeling a bit nauseous, I have forgotten to organise a couple of Christmas presents, I'm supposed to be getting washing done so we have clothes to go away with but seriously the vomit has to be washed first, and I haven't even started packing yet. I've printed off the checklist....does that count?

Friday, December 11, 2009

Pretty Girl Lost

I never thought for a second that she wasn't coming home. I'll miss that little white tip on her tail. I always saw her tail tip well before I saw her. Slinking past the window. Disappearing around a corner.

She was 15 years old and she didn't act a day over 2.

Chloe-Jane aka Pretty Girl....Love you.

Thursday, December 10, 2009

Sweet Summertime

Aaaah....My favourite time of year. And it seems it's Ayla's favourite time of year too. Her favourite past-times involve anything and everything to do with water, and most of them you can't do in Winter.

This is how we've been spending most mornings (...and afternoons). Who would have thought 1 bucket of water would provide me with enough time to water the garden, pull out some weeds, or clean the kitchen as I watch her from the kitchen window. Our dog, Khayman, thinks it's pretty good too.

There is one thing that also loves Summer and this week it has struck us hard. SNAKES. Our beloved 15 year old cat was bitten by a snake on Sunday night and is still fighting hard for her life at the vets. We rarely let her outside at night time but on this night Ayla was sick with a tummy bug and we needed to leave her bedroom door open during the night so we could hear if she vomitted again. Chloe-Jane (the cat) likes to creep into Ayla's bed so we thought it best that she stay outside that night.....possibly not. She seemed a little 'odd' on Monday afternoon but by Tuesday morning she was still lying in exactly the same spot, just staring. Since then she has been declining rapidly. Even today, the vet said that she possibly hadn't reached the bottom yet. I am hoping for better news tomorrow but I have a feeling it could be a few more days yet before there is a possibility of good news.

In the meantime, we'll just sit back and work out ways to pay for it! Gotta love your animals :)

As a little extra to this post.... check out this beautiful blog post from ABR founder Leonid really warmed my heart to know that we have some truly wonderful people on our side. Thanks Leonid!

Wednesday, December 2, 2009

Potty Training the Special Needs Child....Diary of a Wombat Style

If you're reading this because you think I have some idea on exactly how to do are very sadly mistaken. I haven't got a clue! Sorry to disappoint :)

What I can impart is possibly some humour.

Above is a photo of the sign that sits against our wall on the way to the kitchen. It's a spot that we pass by several times per day. It's slightly out of the way from the lounge room where Ayla plays but she is more than capable of getting to it. Our thoughts were that if Ayla could grasp the idea of touching the sign when she needs to go to the toilet then she may actually have a way of letting us know when she needs to go. That being said, let me now share with you the last 30 minutes....."Diary of a Wombat" style.

5.30pm Rolling toward kitchen...giggling. Touch the Toilet sign. Mum does the toilet sign with her hands, picks me up and carries me to the potty in the toilet.

5.31pm Sitting on potty, playing handsies with Mum. Grizzle and do finished sign. Mum takes me off the potty and says "False Alarm"

5.35pm Returned to the lounge room.

5.37pm Rolling toward kitchen...giggling. Pick up toilet sign and chew it. Mum does the toilet sign, and carries me off to the potty again.

5.38pm Sitting on potty, insisting that I'm finished. Mum takes me off the potty and says "False Alarm".

5.42pm Returned to the lounge room.

5.45pm Found my way to the Christmas tree and desperately reach through the wooden playpen.....managed to get a tickle from the tree. Got Bored.

5.50pm Rollin toward the kitchen....Hey! There's the toilet sign, touch it and see what happens.

5.51pm Sitting on potty again. Bored. Finished. "False Alarm"....back to the lounge room.

5.55pm Playing on floor, farting and grunting. Nowhere near the toilet sign. Picked up by Mum and she puts my hand on toilet we go again.

5.56pm Did a wee....."Yay...Hip Hip Hooray", says Mum.....No poo though...suckers!

5.58pm Got to flush toilet....must be some sort of reward.

6.00pm Back in the lounge room.

6.03pm Rolling toward toilet sign...Mum pushes highchair in front of it. Think she's had enough....and now we're on the way to the Bath.

And the funniest part of all of this.....I'm going away for one night (well, 36 hours to be exact) and it's all up to Grandma and Grandpa.....Have Fun!!!!

Friday, November 27, 2009

A very special post from a very special friend

Well this post isn't exactly from me but I really wanted to share it with you.

Jen is a very special friend of mine and Ayla's. She was Ayla's first ever playgroup teacher at Silkwood, and then we came back for some more playgroup with Jen this year too. You think Ayla is mezmorised when I sing.....wait til you see her when Jen sings:) I learnt all about how important Rhythm was from this lovely lady (not dancing rhythm...daily rhythm) and Ayla has been thriving ever since. Much less frustration and it has really aided her development too. She knows what comes next everyday....we have rhythms for getting out of bed each morning and beginning the day, rhythms at bed and bathtime, a daily rhythm, a weekly rhythm. Some people might say that these are probably not that important to Ayla but just you wait and see what happens if you don't go to kindy on a kindy day!

Jen has her own blog called Lavendilly House where she shares all of her creative thoughts and all of the things that make everyday special. In this blog, More Babies are Coming, Jen shares a little about her doll making workshops and how next year she would like to run one to help with Ayla's fundraising, and there are some lovely photos of Ayla playing at Jen's place too. Just click on the link and it will take you to her blog post.

Thanks so much Jen for all of your support, kind words and care.

Thursday, November 26, 2009

Please keep Rene in your thoughts....

I wish I was writing this post with something exciting but I'm not. In the blog, Grandma's Story, my mum thanked a whole bunch of 80 yo ladies for the crafting they had contributed to Ayla's craft stalls. The main instigator of all of this crafting craziness is a really lovely lady called Rene. You can give Rene a crafting idea on one day and on the next she will have filled an entire bedroom with crafted goodies.

A couple of days ago, Rene had a really serious car accident and is in hospital in ICU. She's awake but is in really bad shape. I would love it if you could all write a comment at the bottom of this post wishing Rene a speedy recovery....I'm sure my mum will print it out and take it up to her at the hospital :)

So....I'll start. Rene thank you so much for all of the hard work and creativity you have put in to supporting Ayla and her therapy. Please know that we are all thinking of you and I don't want you to worry at all about all of the unfinished things you have for the stall ....mum's been telling on you. Just concentrate on getting well and we hope you are home and feeling better very soon.

Lots of Love

Monday, November 23, 2009

Standing Tall

This is just a super quick update that absolutely can't wait for a photo....cos I don't know when this will happen again.

On Sunday afternoon I was downstairs sewing up a storm for the markets. Ayla had been sleeping but I was pretty sure that she had woken up. Next minute, Steven came downstairs with Ayla in his arms and he was crying. He said, "Tell mama what you've done". I thought, holy crap, she's killed the cat or something.....

Nope. Steven said, "She just stood up, all by herself! She pulled herself up on the couch to get to some chips". HOLY CRAP!!! This is the most exciting development that we have had with Ayla since she learnt to sit up by herself...and that was quite some time ago now. I am now patiently waiting for the planets to re-align so that I can see it too :)

C'mon know you want to....

Sunday, November 22, 2009

Guest Blogger: Grandma's Story

Well, you guys are being spoilt this week....3 blogs in a week!

A few weeks ago I promised that there would be the occasional guest blog on here. I knew Mum had been itching to give voice to the thoughts in her head so I gave her the first opportunity.

I've just read her blog post. It caught me a little by surprise. I didn't quite realise that she knew exactly the thoughts and feelings that flow around me on a daily basis. It's not something that I try to dwell on daily or talk about....saying it out loud has a tendency to make things a little more real and I kinda prefer to distance myself from it a little and pretend that my life is normal. And it is normal when I compare it to lots of other similar families.

So here you go. This post was written by Mum (Robyn) and Ayla's Grandma. Enjoy.

I have just finished reading the latest blog entry and all I can say is wow. If that doesn’t give us hope for change then nothing will. The therapy is hard to explain, now we see the results and with the report we gain understanding. What we need to do is find the money to continue, and continue we must. Melissa and Steven put in all the hours of hard work with the therapy, and Ayla endures that therapy. So come on everyone help us to find the way to raise the money needed please.

When Melissa invited me to be her first guest on the blog, my thoughts were not what was I going to write about, but rather how can I find the words to express what I feel without going over board. I hope that I have achieved that.

As Ayla’s grandmother I would like to say that I have been there with her from the beginning, well almost. I don’t think Steven would appreciate right from conception. I watched Ayla come into this world, she was the most beautiful baby and the birth was spectacular. The beginning was hard, as things were not right, but we did not know what was going on. Many months and many sleepless nights for Melissa and Steven led to the diagnosis that they now have. This beautiful child now had a label that makes her different from other children.

Melissa has tried to say what that is like from her perspective and I wanted to say what the flow on effects were like for the extended family, however I struggle to find the words. I have a grand daughter who has to bravely fight for every movement that we all take for granted. I have a daughter who wanted nothing more than to have children without the complications, and to watch them grow and become independent adults.
When you experience grief and loss, you go to a place were no one else can come, not even those that you love dearly. I know that place; I went there when I lost my son. Now my daughter is there, and I want to be there with her, but I can’t. My place is different than hers. I guess what I am trying to say is that suddenly as a mother I cannot take the pain away and make it better, and I want to. I wanted my granddaughter to run into my home, and I wanted to hear her say “grandma, grandma, I’m here!”.

I feel a special connection with my granddaughter, I love her dearly. Beautiful? Oh yes she is, and if you take the time to look into her eyes, she communicates in her own little way. She is so precious and I will fight for her every single day that I am alive to do so.

Last night I watched a program on families struggling to care for children with autism, I work with families like those every day in my job. The support from Disability Services is non existent, as stated on the program. I know Melissa has said that they are good in her area, but I would ask ‘Good at what?”. Not financial assistance towards therapy, not emotional support when you crash. No early intervention centres, actually nothing that I can think of. Many mothers who hit the wall have phoned for support and they are told that it will be a week turn around before they can speak with someone. I had that response when Lis hit the wall, and it is not a nice feeling to know that you’re just a number, and who really cares anyway. Caring costs nothing but a little time and empathy, and you would think for in excess of $70,000.00 per year pay they receive, they could find a little of that. They dump and run on the community, well known fact, even they know that is true.

I feel angry at the system that does not help families and then prevents them from finding the means to help themselves. In this I refer to Melissa’s attempts to fundraise for Ayla’s therapy, damned if you do and damned if you don’t, Melissa never made charity status so that she could offer tax deduction incentives, and to run charity golf days etc

I have saved the best to last. Can you imagine what it is like to arrive at work and find your desk covered in knitted and crocheted items? Well I can, I experience this every week, delivered by my work colleagues, from acquaintances and even people I don’t know. Then I receive phone calls to come and collect a few things for the market stall and I find a whole bedroom full of items that have been lovingly made by 80 year olds.
These 80 plus ladies stand to the side, glowing with excitement that they have created these wonderful items to help my granddaughter. My work colleague’s needle felt flowers during lunch breaks and at home most nights, they sit at their sewing machines before work and after, to make items. Others knit and crochet for Ayla; some have never done craft before. One colleague offered to help make butterflies and asked “how do you do a purl?” I looked at her and asked “are you kidding” she was not. To the Betty’s, Rene’s, Myrtles, friends at work, and all the others (too many to name) I am forever grateful. Thank you Jean for enabling me to have a break from the markets, by going for me once a month. Ayla has touched many people along the way and we all thank you for your amazing generosity.

We take this journey one day at a time, and hope for a little miracle along the way. Money is now low for the therapy, and somehow we have to find the means to continue. We will I know, as my daughter will never give up while there is hope. I think those of you that read her blog, know what an amazing woman she is. I have always known that, but she is tired, and she is hurting, she strives every single day to find the means to help her daughter. It is Christmas soon and Santa may help us find the capacity,
(or the money) to do what we have to do.

Robyn – Grandmother, mother, friend and wife

Friday, November 20, 2009

In Comparison

Some of you may be wondering what the results were of our last ABR comparison report for Ayla...well according to my Mum anyway :). So I thought I would share it with you as well as some photos of Ayla with her 'machine' on.....Our very own Android.

The comparison files are really in depth and include photos so I thought I might just add one here and there over the next few weeks. I'll add my favourite one first.

February 09

October 09

The paragraphs below, in italics, are taken straight from her comparison file. I haven't edited them....basically because I'm too lazy :)

The quadruplet position in Feb09 yielded this strange placement of her arm. We could how much the shoulder blades were depressed and how the humerus went into the most unusual backward twist. In the home video of Oct09, she is beginning to hold her position with the elbow although we could see how she still used the trapezius muscles to help her with the position. So in that sense it is still fake support from the shoulder. But what we could clearly see is the change of the shoulder joint. The shoulder joint has strengthened to the extent that the arm no longer does such strange backward twist by itself. What is really more important is that she begins to use her elbow meaningfully for the support of her upper body.

The manner of the legs spread has changed as well. In Feb09, Leonid had to hold the entire legs to ensure that her legs would not spread outwards and shot out of the quadruplet position. Her ‘froginess’ of the legs have clearly changed. With much less restraint provided by the mother in the home video of Oct 09, her legs do not spread out as before and she is able to hold the quadruplet position even though it is still less than the real quadruplet position expected.

Note how her shoulder blades slide all the way upwards to the base of skull wheras in Oct 09, her shoulder blade begin to leave the region of the base of skull. That was in Feb 09, she was completed incapacitated by the depression of the shoulder blade and by the upwards slide of the shoulder blade

This was the result that had us really excited. The change is absolutely visible, and not just to us. What also excites me is the possibilities that this could lead to. There's a chance, however small, that Ayla may actually be able to crawl eventually. But for now, we take each small improvement as it comes and we put our heads down and our butts up and we work....Hard.

Wednesday, November 18, 2009

It's a New Dawn

It's a new dawn, it's a new day....and we're all shiny and new. They're new swimmies for Ayla to, by the way.

Welcome to our new blog home. There are a few reasons for the change. The first being that the setup on our webpage blog just wasn't working for me. I couldn't attach video directly to the blog and it was really difficult to get the traffic that I was hoping for.....not that I think everyone will be super interested in everything that I have to say :)

The final reason was the shove that I needed to go ahead and just do it. We have just arrived home from our last ABR workshop for Ayla for this year and so many things came out of it for us....including the possibility of a 10% discount on our ABR machine hire for the year. That may not sound like much but it equates to $204 Euro or $327AU each year. All we have to do is update our blogs weekly and have links back to the ABR website. It might sound fishy, but it's really not. You see, the thing is that ABR is not as widely known as we think it should be. ABR (Advanced Biomechanical Rehabilitation) is a relatively 'new' therapy for kids with brain injury and cerebral palsy and as such it hasn't been recognised by mainstream health professionals. Only those parents and kids who are involved with ABR know the true value of this therapy so it has always relied on word of mouth. This little dangling carrot, aka 10% off, is just a way of raising the profile of ABR across the world.

It gets better though....In this 'blogging campaign' that's being undertaken by the parents there is an opportunity to win our machine hire FREE for 3 months!!! That's the incentive we are all going after I'm sure. It's worth $1086AU, and when you're paying up to $25 000 per year for a therapy (including flights and accommodation), that really is worth blogging about. If you want to help us save some serious $$, you can! All you have to do is create 'traffic' from this blog to the ABR websites. Tell all of your friends about our blog and our campaign to be slightly less broke this year, facebook about it, tweet it, re-tweet it (on twitter), click on the ABR and ABR Asia links in the panel at the right and have a look around. That's it! It will only take a couple of minutes....c' know you wanna help....:)

In all seriousness, if you're reading this and you have a child with a genetic or acquired brain injury, please visit the ABR websites. They really are life changing for both you and your child....and I'm not being asked to say this. Over the coming months I will try to post as many before and after pictures and videos of Ayla so you can see it too. END PLUG!:)

So, we're home and we're tired. It's a fast-paced few days during the workshop. We have theory workshops, videotapings, one-on-one prescription exercise sessions and then training sessions....where Ayla is expected to sit still and be practised on for 2.5 hours.....she loves it, not!:) This time around we have spent a lot of extra money to get the ABR machine which will help us to increase our ABR hours. The machine is able to do some of the hours for us...and before you start thinking that it will take the pressure off us and you may actually see us socialising.....No, it won't. The machine can only do a few of the exercises and is used either during the night or whilst we are doing other 'manual' exercises. We still have 1 - 2 hours of our new 'ball' exercises plus around 80 minutes daily of 2 other manual exercises.

You're probably asking yourself why we would bother spending so much money if it's not reducing the amount of work that we will be doing, right? It's kinda hard to explain but basically ABR is not measured in how many months or years you have been doing the therapy but in how many hands-on hours you have done. The more hours you do, the more quickly the child improves. It doesn't mean more hours, more improvement.....and so on, until your child is 'normal'. All of these kids have the potential to be the best they can be. The more ABR hours we do, the more quickly these kids can move toward being the best they can be. Here's an example: If I have the machine working on Ayla's chest for 20 minutes, while I do the manual exercise on her neck for 20 minutes, that's classed as 40 minutes of ABR. That's like 2 for 1!! That's what I'm excited about. I have the opportunity to, at the very least, DOUBLE our ABR hours.

Until next time.....

By the way....if you are just joining us here on our new blog and you want to catch up on Ayla's story so the right hand panel is a section with the links to earlier blogs on our webpage. Just click on that and you'll be all caught up.