Saturday, November 20, 2010


I've trialled my new ABR exercises this morning....yes, I had a little break before I got stuck in (Ayla was exhausted). This time around I have been given a new format for Ayla's exercises. Instead of timing how long I manage to do her exercises for, I have to count the number of repetitions I do of each exercise.

Before each workshop the families are required to do a Home Performance Report where we calculate the average number of hours/day that we do on each exercise. And this is where I fail :(.....I do ABR consistently on Ayla throughout the week with Preschool days being a no go because she's not home and then goes to bed almost as soon as she does get home. The reason I fail at reaching the hours//day is because I have given birth to a CATERPILLAR!!!! This kid loves to move, wiggle, wriggle and best of all shred the towels and pads and the new trick.....pulling them out and throwing them away. Heaps of fun :). So this time around, instead of timing the exercises and averaging them, I am counting the number of repetitions. I think the idea is that we will all be able to see exactly how much work is being done on each area.

In saying all of this, it doesn't sound like I get much done and everyone seems to think that Ayla responds extremely well to the 'tiny' amount of work that I do get done on her. I say tiny only because when I compare my hours with other families, they are.....One lady I know can work on one exercise 3 hours straight!!!!! BUT, after this morning, I don't think the amount of work that I'm doing on Ayla is so tiny after all. I have done 3 of her prescription exercises so far today and on each one I have done 200 repetitions. When I looked at the overall time, it was only a few minutes longer than what it would normally have taken me to get 3 exercise done. It was requested that I aim for an average of 100 repetitions per day, per exercise. I did 200 this morning, and will do each time, so that when I average them come August, it should work out to 100 or more/day. That's the theory anyway.

I have thought a lot about (and resisted) the idea of putting my exercise tally up on this blog. I guess I thought that I would then be more accountable but then I thought I would be placing some really unnecessary pressure on myself too. Now I'm thinking......well, I am woman and as such I have the right to change my mind, as many times as I like :). So I have changed my mind and I will put my tally up at the end of each week.....until I feel too pressured and decide not to :). The weeks will run from Saturday - Friday.

And because I know that you are waiting to see another it is :)

ABR November 2010 Improvement #2

In this photo you can see that Ayla's back is relatively flat and featureless except for her immature bumpy little dragon spine. This is due to the deficiency in the posterior trunk volume. The scapula is submerged and the edge of the scapula is not visible.

But here we are in November 2010, we can actually see her scapula edge. The posterior volume has improved and the edges of the shoulder blades have emerged. This is due to an improvement in the underlying volume of her trunk and the connection of the shoulder girdle with the underlying fascia.....she's still got a hairy little back :)

Tuesday, November 16, 2010

Back from Another ABR Clinic

Ok so we're back from our last ABR clinic for the year. We all worked very hard and Ayla is still completely shattered. Since arriving home on Saturday night Ayla has done nothing but sleep. She slept until 9.30 Sunday morning, slept 4 hours at Sunday lunchtime, slept 12 hours Sunday night, slept 4 hours on Monday lunchtime, slept, slept, slept, slept.....and the kid is still yawning!

Despite our interstate move completely throwing out our ABR rhythm, we have still had some really fabulous changes in Ayla's physical structure and my plan is to share them all with you over the next couple of weeks.

So here we go.....Improvement #1!....please excuse the formatting issues, I can't seem to get the photos side by side.

These are photos showing the strength (or lack of) of Ayla's shoulder girdle from April 2010.

You can see that her elbows are a considerable distance from her torso and point outwards as Ayla tries to maintain her stability in this prone position. Lifting her arm meant that she needed to balance her weight and stability by moving her torso in the opposite direction.

The photos below were taken last Friday, November 2010.

With the increased volume in her shoulder girdle, her stability in the shoulder has improved. What we see here is that she is able to use her elbow as support in the prone position. Her arm positioning during prone position has shifted closer. Closer elbow support requires more internal effort and she is even able to maintain close one arm elbow support in the one arm prone position.

Other good news from the clinic was that Ayla will now be attending every 2nd clinic instead of all of them. This is going to be much easier to cope with financially. For next year that means that we will only be attending clinic in August. I'm a bit nervous about only attending once next year but I'm sure the monetary savings will make it totally worth it.

Thanks to everyone who purchased items from Don't Tell Mamma and Mum and Dad's market stall and a very special thank you to some of you who made very generous donations to help us get to this last ABR clinic of the year. We couldn't have done it without you all.

Wednesday, November 3, 2010

Cone of Silence

The Cone of Silence is a bit of a running joke we have amongst some Facebook friends. For most of the parents I chat to, the cone of silence is something they would all love to invoke on the days that their kids are ratty and noisy and sometimes silly. When someone appears to be having one of 'those' days, someone else is bound to ask...."Do you need a cone of silence??". It's all a bit of a giggle.

Today, I need a Cone of Silence. A big one that covers my whole house, including the driveway. As you can imagine...Ayla is not the reason. Well, not directly anyway.

If you have a neurotypical kid, this may take some explaining. But if you live in my'll just get it.

It's hard to explain and it's going to be a total case of the farmer who complains when it rains and complains when it doesn't. My life feels like a complete shambles at the moment. Advocating at one school for Conductive Education, trying to raise money for Ayla's therapy, sewing, running web pages and shops, running a household, working, doing therapy, trying to make sure there is food in the fridge and food on the table and food in the lunchboxes, studying (for work stuff), masses of paperwork simply because my child has some extra needs .......but by far the most exhausting is the continual APPOINTMENTS! Far out....enough already! Seriously, I got rid of all the specialists in Ayla's life long ago but we still have appointments with the Speech therapist, appointments with the Occupational therapist, appointments with the Physiotherapist to discuss equipment needs for school etc., appointments with community connections to see how they can help us, appointments with schools, appointments with GPs to have paperwork filled out. Do you see where the whole farmer analogy is coming in? Nice huh? Yes, if I wasn't able to have these appointments I would be whining too because we wouldn't be getting the help we need.

It just seems that there is an appointment for EVERY day of EVERY week, and all because I need to fit in with their schedules. My entire day today was taken up with appointments....I didn't even get breakfast until 11am and my house is starting to look like pigs live in it. Anyway, I'm starting to rant now.

I chose a Cone of Silence for the rest of the afternoon. And in that time I decided this.......I need rhythm in my life. I need a weekly rhythm so that I know what comes next and can plan for it. So, Monday is appointment day. My new philosophy on appointments is this.....if a therapist can't possibly see us on a Monday, then we're just not meant to have that appointment. Tuesday is a home day/baking day and don't be surprised if the phone is off. Wednesday is a half day at school for Ayla and for me it's shopping day, Thursday is preschool for Ayla and sewing and errands day, Friday is preschool for Ayla and cleaning/sewing day for me. At the moment, weekends are taken up with working. So there. There is my new weekly rhythm. Now I just have to create an 8th day of the week so that I can do my entire week of ABR in one day :) Wish me Luck!

Another video of Ayla playing with Gus.

And now that my whine is over.....I would really love to thank everybody who purchased items from Don't Tell Mamma in the past 2 weeks and who made amazingly generous donations to Ayla's account. We now have enough to get to the next ABR workshop. Thank you from the bottoms of our hearts.