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.


Monday, April 24, 2017

An AdventuRETT year

It's been about 18months since I last blogged here... Life with Rett syndrome continues...

On the camping trip I wrote about in the previous post (October 2015?) we were having a lovely time on this isolated beach that had kangaroos hopping within arms reach, spectacular sunrises and wild coastline until Eva got a buckle fracture in her femur.  She'd been doing some beautiful standing in soft sand on the beach, was back in her chair at camp and then had a Rett shake that trapped one foot behind the footrest of her chair and that was it - screams of agony that just didn't go away.  We thought she'd been bitten by something and in the Australian bush that's not so unusual.  A spider, snake?  We placed a call to the local hospital (standing in top of a log waving my phone in the air to get reception) and set off knowing that it would be faster to drive there than wait for an ambulance.  In the car she stopped crying almost immediately.  Then about halfway to the hospital she started smiling.  Whaaat?!  By the time we go there we wondered how we were going to explain what had happened but as we lifter her into her chair she started crying in agony again.  It was clear to us that she'd somehow broken her leg or something had happened to her hips.  But it was a small town hospital that had never heard of Rett syndrome and it was hard to convince them that we might know what was wrong and what was needed - an X-Ray.  Long story short - buckle fracture in her femur, transfer back to our home hospital for a cast and 8 long weeks for Eva in her wheelchair with her leg outstretched.  She has long since recovered, but her ability to stand however has not.  We've just received a new piece of equipment that will hopefully work on that in as gentle a way as possible - The Rifton Pacer.  First go was yesterday and she moved a few steps back and to the side - pretty good!

The next year at school in 2016 - Grade 3 - was an absolute dream of a year.  Eva had a teacher who was caring and fun and incredibly attuned to the needs and discipline to bring out the best in her as well as all her classmates.  The kids began to see Eva as we do - absolutely normal with just a high level of assistance required.  She got her first report card ever and did really well at English, Science and Maths! It wasn't just the effort of her teacher aides, her teacher and the school that made it so good, it was the fact that we felt like she was really being *seen*. She was invited to parties and had her own fun party - she expressed exactly who she wanted there and who she didn't.  (Which caused dramas and I had one mum get angry at me that her daughter wasn't invited) It also created close friendship with some girls she hadn't known well before. 
We also took an overseas trip to Japan and discovered just how easy some countries can make your holiday when they know how to look after people with disabilities!  Japan - we praise you!!  Our own country can't get this right but Japan - wow. I highly recommend a trip there.  Of course there was one tricky thing - Eva is allergic to fish and sesame.  Despite the fact I speak Japanese and can request a vegan version for Eva we didn't want to risk it and so had to search out and buy all her food - turns out local corner stores had an amazing array of fresh food we could cook with at our air bnb's.  But saying that we had to take a few packaged meals from home and she never wants to eat cold soybean noodle packet pasta ever again :)
A few photos:


At the Owl Cafe in Tokyo where you can spend an hour hanging out with an array of different owls.  Eva was super excited having seen Harry Potter the year before but when we got there she was exhausted and spent most of the time asleep.  Ya get that!
 

And.... the most amazingly bathroom ever - totally accessible with multiple options for every need and age.  All at the train station in Tokyo!


Later in 2016 we took a trip to an island in the Great Barrier Reef and camped for 5 nights under the stars with a drop toilet and a picnic table being our only amenities.  Sounds terrifying I'm sure to most parents of a child with Rett but we had some of my family with us including my sister who is a Paediatric Emergency Specialist.  Kinda brings the fear aspect down a billion notches.  If only we could all travel with someone like her all the time :) Thanks to an amazing invention called the bathascope / bathiscope that my Dad copied and made using an old bucket, some glue, a sheet of perspex and a mirror set up on a wooden board that tied to the side of our kayak Eva could actually see the reef beneath her as she kayaked.  There was no other way she'd ever see it since she is unable to tolerate putting her head under water and even less to having goggles or a mask over her face.  It was an incredible experience along with the thousands of stars and the almost daily sight of a breaching whale just a hundred metres or so from shore.  I'm glad she got to see it before it dies... this breathtaking reef is dying (quite quickly) from weather-related climate change with an increase in sea temperature.  A wonder of the world about to vanish!  A few more photos:

 The mirror is at an angle we determined before we left so that Eva can sit as she is and see the reef through the open bucket which has a clear perspex bottom on it. 








We topped the year off with a trip to the beach for a very summery Christmas break and then before we knew it, it was 2017 and we were back to life and school and the ups and downs of Rett syndrome (shakes, intestinal issues, sleep changes etc) as the school year and a new teacher and a new level of curriculum began....

So far though, so good.  It was a bit of a rocky start but we have settled in to our rhythm this year which in a nutshell is, I think, the best way I can cope as a mother of a child with Rett syndrome - to balance myself to the rhythm of life - no expectations about what *should* be, just responding to what *is* happening today, this month, this season as best I can.  And looking ahead to know that we have winter before us and so a few things need to be in place.  We've been here 9 winters before and only one of them has been spent in hospital - hoping to keep it that way!  So... some essential oils like rose (for coughs - lovely rubbed in at the back of the ribs and heart), lavender, eucalyptus and tea tree;  keeping on top of gut health for best possible immunity - sauerkraut, water kefir, turmeric, coconut oil; making a 'fire cider' tonic to keep colds at bay; and prepare for all weather - although we live in a sub tropical climate it gets cool at night and this is when Eva can catch a chill if she's not rugged up well.

I hope it won't be another 18 months before I post again...  And to the Rett parents out there who like to travel - I'd love to hear your stories.  Please let me know in the comments section about them and if you have a blog please let me know!

Emma