My daughter Eva has Rett Syndrome; a rare neurological disorder that in her case, left her locked in a body that would not work for her from the age of 9 months. I went from being a photographer to being a mum to being a rudimentary therapist, advocate and ranter. This blog is here to share ideas, thoughts, therapies, recipes, advice and sometimes have a rant. or two.

Wednesday, September 26, 2012

Oh porridge

I come from a family of porridge eaters. It's in my part-Scottish blood and was the breakfast of choice in all the Scottish comics my Gran would send me that I used to devour as a child. So of course the first breakfast cereal Eva ever ate was porridge. And she liked it! So for about four years she has eaten porridge. Porridge with rice milk, porridge with stewed fruits, porridge with coconut milk, porridge with blueberries, porridge with rhubarb, porridge with banana and even porridge with dark chocolate and raspberries!  But finally and really, as expected, Eva pursed her lips, stood her ground and refused her porridge. And again the next day. And the day after that.  We tried some cereals - she ate two mouthfuls and it was too sweet. We tried gluten-free toast - she ate three mouthfuls but it was too hard to chew and got gluggy. 
Racking my brains for what else a wheat-free, dairy-free, egg-free child could eat that would be nutritious I came up with one thing. Scrambled tofu! I thought I was a genius. Eva liked the idea of it (I'm not sure she'd eaten it more than twice before) and so for three glorious days she had tofu - scrambled with tomato and oregano, curried tofu and then tofu with caramelised onions and fresh herbs. Then that was that. Tofu lost its appeal and porridge is now firmly back on the menu.  At the moment she's (dare I say) enjoying porridge with banana, raspberries and coconut cream.  It'll suffice for at least another year I hope... If you have any other ideas for me I'd love them!

Bedhead and hot porridge
Eva helped with breakfast -
empty bowl; porridge everywhere!

Monday, September 24, 2012

Lovely Yellow Dress Day

This weekend past I attended a very lovely book launch that also happened to be a fundraiser for the International Rett Syndrome Foundation (IRSF)!  Author Michelle Worthington has been longtime friends with a family who have a little girl, Ava, who has Rett syndrome and one day after spending time with Ava she went home and wrote a story about her! Just like that!
It's a gorgeous tale of a little girl called Ava who has particular coloured dresses she wears on particular days.  The illustrations by Sophie Norsa add such beautiful imagery and when I read the book to Eva she grinned the whole way through.  The author and Ava's mother organised the book launch and an online raffle (including a signed t-shirt from Olympic multi-medal winner swimmer Alicia Coutts) and Michelle is kindly donating 5% of her royalties to the IRSF. I bought one book at the launch, had it signed for Eva and now want a whole bunch more to send off as Christmas presents! If you're keen to buy a copy click here for the link to Michelle's online store.

We finished up our weekend at a sunset birthday party for one of Eva's close friends and it was one of those wonderful rare occasions when Eva was just so on form. Earlier she had proudly dictated what was to go in the birthday card and kept indicating she wanted to write more.  I eventually ran out of options to give her and asked her if she could try to say it or something like it. She pursed her lips and smacked them together - it was kisses she wanted put on the card! She was so proud of it! When we got there her friends came up and said hello and they are all such kind and gentle little girls giving her a hug or touching her arm to let her know they care. And even though she couldn't run around with them or talk with them she smiled and glowed the whole afternoon. When the birthday girl took great care and time reading the birthday card Eva wrote I thought she was going to burst with happiness. I know I was!

Friday, September 21, 2012

Hands off medicine

We've had a pretty full schedule of appointments lately - Neurologist, Immunologist, Spinal Clinic, Opthalmologist as well as our regular physiotherapy, speech therapy and kindy.  I'm not sure how we manage to squeeze all these things in and still find time to eat, sleep and talk to each other.  But the good news is things are going along relatively smoothly for now.  Eva's eyes are still squinting when she focuses on things up close but we don't need to change her prescription.  Her immunisations are being done under medical watch in case she has an anaphylactic or allergic reaction - so far we've had the MMR - Measles, Mumps & Rubella vaccine - the most worrying as it has egg albumin in the ingredients but fortunately Eva had no response.  Our Neurologist said we don't need to start any anti-epileptic medication as the shakes Eva gets were captured on her latest EEG (Electroencephalogram) and don't show up as epileptic in nature.  But like most girls with Rett syndrome there is a high chance she will develop seizures and we are always alert for the signs.  Another frequent occurrence in Rett syndrome is scoliosis and Eva's curve was measured via x-ray at our hospital Spinal Clinic and has moved from 13 degrees to 20 degrees in the last year but as she was slumping slightly during the x-rays (it took them 4 goes to get it right) the degree could be incorrect.  However the fact that Eva's spine wasn't checked by the Specialist with his eyes and hands is slightly worrying.  I'm wondering if it's normal practice these days to just tick off an x-ray and whisk patients through rather than conduct a hands-on observation which would naturally take more time.  Earlier this year when we discovered Eva had one leg shorter than the other she was put through numerous x-rays as the Specialist could not measure her legs by hands and tape measure alone.  They even wanted it done under a general anaesthetic so she wouldn't move which I quickly declined!  Makes me wonder what they are taught when they can't measure some bones the old-fashioned way.  And on top of that, the cavalier way x-ray's are ordered is concerning to me as a parent of a child who will most likely be having them year after year.  It was only recently, and at my request, that they started putting a lead cover over her ovaries and parts of her body that weren't being x-rayed.  I now take the precaution of wearing the lead vest and the thyroid cover every time I'm in there.  Of course I'm told that the research shows it can't possibly have an effect on us but I'm suspicious - if it can have an undesirable effect on a foetus then I think it's worth being wary of.
But for now, the yearly-review x-rays and tests have been done and it looks like we won't have to have any more for a while, fingers crossed. Although Eva does seem to take most of this prodding, poking and testing in her stride and apart from the occasional glare or rolled eyes she's pretty good-natured.  It's mummy that gets upset!

EEG at age 1- a bit concerned

EEG at age 4 - pretty chilled out about it now.

Monday, September 10, 2012

Finger Fundraising on Facebook

No, not in need of a hand transplant here- just need your fingers to do some tapping on my behalf!  As some of you know I'm not on facebook. Yes, shock, horror I have no 'friends' and I don't 'like' things.  I'm weird.  Let's just dispense with further discussions and move right along because I need you facebook folks to do something:  
Could you please vote for the Rett Syndrome Research Trust (RSRT)* to win $250,000 in the Chase Community Giving Challenge? The RSRT is doing amazing research into Rett syndrome but it is an incredibly expensive process.  Imagine if that grant was the one that helped them find a cure. Awesome!
Just go to this link before the 19th September and vote and like and ask a friend and tell your mates and do all those cool things I'm missing out on.  But look out for me cos I will be on there soon.  And I'll be voting up a storm too.|26-0687439|ref|b41e6a5c37

* A bit about the Rett Syndrome Research Trust adapted from their website

The Rett Syndrome Research Trust is only four years old, but our unique and effective strategies to support and stimulate research have been developing since 1999, when Huda Zoghbi identified the genetic cause of Rett Syndrome.  In response to this turning point, a small, determined group of parents established the Rett Syndrome Research Foundation to accelerate and intensify scientific exploration. Co-founder and Scientific Director Monica Coenraads (mother of a girl with Rett syndrome) set a tone of dynamic exchange, energizing the field with new approaches, conferences and seminars and the engagement of extraordinary scientists from diverse disciplines.  The Rett Syndrome Research Trust is known for innovation, intellectual rigor, deep knowledge of the field and nonstop determination.

Down on the farm

We had a farm visit with Eva's kindy group the other week and it was fabulous for so many reasons not least of which was her thorough enjoyment of it all. Eva milked a cow, fed a calf, rode a tractor, a horse and a bull (!), fed some lambs, held a chicken and had her photo taken constantly. 
Spending that amount of time with a diverse bunch of kids Eva's age led me to realise a few things I've been missing in our communication. The most important being that kids her age tell funny little fibs quite often.  The boy sitting near us said he saw elephants hiding behind trees and believe me there are none in Australia except in zoos. When I asked Eva if she could see an elephant too she looked straight at yes on her talking stick. If I hadn't been in the presence of a regular little kid her age I may have thought she wasn't using her eye-gaze system properly.  
The kids were also very easily distracted and often ignored questions they didn't want to answer or would make up something completely random in order to respond and move on.  If these same desires are in Eva's head (as I'm sure they are) then it makes complete sense now as to why she ignores me or answers in a strange way then grins to herself. 
If we had another child then I'm sure I'd know these things but with Eva as our only experience in this it's been a revelation.
I learnt one other thing: I must stop forcing Eva to ride horses! I want her to like it, I know it's good for her (hippotherapy and all that) and have been making her ride them at markets, fairs and fetes since she was two and she has consistently disliked it. One of these days I will learn..

Thursday, September 6, 2012

Relinquishing a child

There was an incredibly moving forum broadcast on SBS Insight on Tuesday night (find the link by clicking here) called Breaking Point. It was about parents who have a profoundly disabled child that they have relinquished to the state - why it happened, what could have prevented it and how they feel and cope now.  During the broadcast facts and figures were on screen and one of them in particular caught my attention - The government spends around $270,000 per year on a child who is relinquished. Wow that is a lot of money.  The difference between that and what families receive (if anything) to assist with the costs of looking after their child at home is astounding. And it's one of the main reasons that families have given up their child: they have had so little support with in-home care that they have become depressed, broken and have nothing left to give. One family on the forum received no help at all despite requests.  Another received four hours of respite a week (equivalent to roughly $8,000 per year in government funding) - not even enough to catch up on one night of sleep.  Many of the families on the forum said if they'd received adequate help and respite from government services they wouldn't have had to relinquish their child but after years and years of little or no sleep and no break they were beyond breaking point - relinquishment was the only option to keep themselves sane and keep the rest of their family together. For families who have children who require around-the-clock care the chance to have just one unbroken night's sleep is impossible without outside intervention of respite. The cost to pay for it privately is completely prohibitive if you have had to rely on a government pension which many do as they can no longer work due to the constant care of their child.  Parents of newborns are privy to the experience of night after night of very little sleep but these parents experience it night after night for decades. Long-term sleep-deprivation is linked to many adverse health conditions.  Along with being too exhausted to fight and stand up for rights for your family and child, feelings of grief, helplessness and anger can be just as damaging to health and wellbeing.
What a very sad situation that even with families begging for assistance and pleading for changes to the way the system works, it is still totally and utterly broken. But at least some states are making progress on changing that using the Australian Government's recommendations as outlined in the Productivity Commission Report on Disability Care and Support that recommends an Australia-wide National Disability Insurance Scheme. However my local state government has completely ignored it.  They have instead launched their own initiative which will (yet again) direct time, money and training into another new system instead of using those funds to implement what was recommended.
What a sham.

Tuesday, September 4, 2012

We did it!

We made it! We all managed to finish the fun-run and we raised the money needed for Eva's chair for school next year! Some of us did it in exceptional time - 45 minutes was the fastest and I came in last of our team at 73 minutes - but we all ran the whole way, we all finished and were on a high for hours.  Those of us who made it to breakfast afterwards scoffed much bacon, eggs and coffee at Sisco and felt very proud of ourselves. Well done Team! 

Here we are, plus friends, after our breakfast feast! Thank you everyone!

Saturday, September 1, 2012

Running for a chair

In less than 8 hours I'll be waking at 4.15am to have a quick coffee and warm-up before doing a 10km fun-run.  We are doing this fun-run to raise money to buy a chair.  Weird huh, to run for a chair. The chair we are running for though is for Eva to use at school next year and despite it's simple look it is complex and multi-functional.  It is also very simple to use - something I thought was very important given the number of teachers, aides and carers she will have helping her along the way.  Simplicity is certainly not a given with disability equipment! This chair is going to set us back close to $5,000. And I hate that we can't afford it and that we have to fundraise for it.  It's not something that sits well with me as a parent and especially as a proud-part-Scottish-parent. And I wish that I could just focus entirely on fundraising for Rett syndrome research. But quite frankly we would be beyond destitute if we had to pay for everything Eva needs.  It's kind of outrageous when you price it all up.  It's not like saving for a couple of weeks to get your child a trike for their birthday that might set you back $200. For us a similar trike for Eva that has the supports she needs to ride it will set me back US$3,400. And that price escalates to at least twice that when you buy it in Australia. Anything related to disability seems to have a few extra 00's on the end of the price.
And I don't want to rant too much here (cos I need to keep my heart rate nice and low for tomorrow!) but when I explained the cost of equipment to our Premier a couple of weeks ago he had no idea whatsoever at the costs endured year after year after year. Most friends and family assume that people with disabilities are well-provided for by the government. Heck I thought so too until Eva came along. While I think we live a pretty awesome life compared to so many in the world I have to remember to compare myself to my peers:  A chair for a baby to sit in the bath when they are young is about $50.  A chair for Eva to sit in in the bath so she doesn't topple over (and preventing us from tearing back muscles through holding her upright) cost us $700.  Then there's wheelchairs, hoists, electric beds and many other pieces of equipment that don't seem that necessary until you've lifted, showered, changed, dressed and fed a child who gets heavier month after month. 
And that is why we needed support to buy this chair - in our case it really does take a village to (fund)raise a child!
So to all the lovely people who have helped us fundraise for this chair by either joining our running team or sponsoring a runner, I send you a very big THANK YOU!! We have a 12-strong team running tomorrow and have raised close to what we need for the chair. Yay!  We'll be thinking of you as we see the sun rise and pound the pavement. And Eva will get to go to school next year in a supportive chair that will keep her body upright so she can be free to concentrate on learning.
Thank you :)