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.