Welcome 2012!

A new year has begun and it feels really good to leave 2011 behind! Somehow I was more upset about my brother this year than last year, not sure why… It’s now been 5 years since he left us.. which is a long time you would think but for us, his family and friends, for us it feels like it was yesterday…. I’m worrying that I might forget about him as the years go by, forget what his voice sounded like or what he looked like.. Crazy thoughts and feelings but even though I am feeling sad and down around this period every year I am happy in myself and with my life. I have met some great people here in Perth and love the mix of being a stay-home-mum and photography. Just wish Sweden was a little bit closer to Australia, that’s all.

I’m totally ready for a new year and more therapy for Cayla. This year must be easier than last year for sure!! Here is what we’re doing at the moment:

Cayla is wearing her foot splints (AFOs) 4-6 hours a day and we are using the Elektrodress about three times a week. It takes me no longer than 2 minutes to put the ‘stickers’ on her leg and start the machine, and Cayla is not bothered by this at all. She knows what we do now and even trying to help by standing up, pulling her top up and turning when it’s time to put one of the ‘stickers’ her lower back. The little backpack I bought for the tens machine works really well as it has a clip on the front so she can’t take it off. I can definitely see and feel a difference since we started using this method. She is still a bit high up on her foot, especially when walking/running but that is probably just due to habit and she’s been using her left leg as a crutch. She can certainly put her whole foot flat on the floor but I suppose it takes time to build muscles and change habits. We are doing both stretches and strengthening exercises with her every day as usual.

We are seeing Julia, a speech pathologist at Kids are Kids and she has recommended us to use some of our Better Start Funding to purchase an Ipad to use in Cayla’s therapy. She thinks it would really benefit her and I can’t do anything but agree ;) There is definitely an improvement in Cayla’s speech compared to a couple of months ago, she is now copying some of the words we’re saying and even though it’s not very clear we still know what she’s trying to say. We will be seeing Julia weekly this month and after that fourth nightly. As this is private care and not provided by TCCP we are using our Better Start Funding to pay for these sessions.

Our physio therapist Megan from TCCP has been away on Long Service Leave but is back now so we will be seeing her tomorrow. She will assess Cayla’s range and advise us when she thinks Cayla is due for Botox again. An appointment with the specialists at the ‘Lower limb and foot clinic’ at TCCP has been made in early February where they will review Cayla’s orthotic needs. Megan will also visit Cayla’s daycare centre to talk to the staff about Cayla, cerebral palsy and how they can best care for her the days she is spending there.

Physio with Jodie from Wize Therapy
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Genetics

I have been searching the net for more information about Cayla’s condition both in English and Swedish. I know that I shouldn’t read stuff online but I just couldn’t help myself. So I know that it’s a bit unusual and I know that these extra folds are positioned on the outer cortex of the brain which controls movement in our bodies hence Cayla’s cerebral palsy.

But I have also read that it could be genetica, talking about a chromosome called Xq28, but more often a mutation. It does however sound like Cayla will now have this gene and will therefore be able to pass this on to her children in the future. A scary bit of information is that a lot of children with this condition will develop epilepsy at 4-12 years of age. But this might only be a risk for the more severe cases what do I know? I do however want to talk to someone who might be able to give us some thoughts on this so I have contacted Dr Kate Langdon for an appointment in due course.  

I have also booked Cayla in with a speech pathologist from Kids are Kids as of recommendation from a friend of mine. She is prompt trained which is a technic that I think Cayla would benefit from so we’ll see how that goes. We are seeing her in a couple of weeks.

Better Start Funding

We are so lucky, from the 1st of July 2011 the Australian Government are providing children with Cerebral palsy $12000 (max $6000/year) for early intervention services.

These services include:

  • audiology
  • occupational therapy
  • orthoptics
  • physiotherapy
  • psychology and
  • speech pathology.

 Up to 35% of a child’s early intervention funding can be used for the purchase of resources. This means that up to $4,200 in total out of the $12,000 can be used for resources, up to a total of $2,100 in any one financial year. Resources that are purchased with Better Start funds must:

  • be recommended by the child’s Better Start service provider, and
  • be directly linked with the early intervention services being delivered to the child, and/or
  • provide support for the delivery of interventions at home.

This is going to make a huge difference to Cayla and a lot of other children with disabilities as we can now not only use the free service provided by TCCP but also private therapy such as Wize Therapy and Kids are Kids!  I wonder if an Ipad is a reasonable resource request……? ;)

http://betterstart.net.au/what-is-better-start/    http://www.fahcsia.gov.au/sa/disability/progserv/people/betterstart/Pages/better_start_early_intervention.aspx#1