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.

Sunday, April 21, 2013

The look of love

There are times that we get the most incredible eye contact with Eva. We relish it and even occasionally catch it on camera. On our recent holiday together we both got it on the same day. Bonus!

Eva and her Dad have a very special relationship with plenty of giggles, some sharing of Australian football (AFL) and a whole load of love! 

The big discovery

Ever since she was a baby Eva has been allergic to fish.  We first found out when we gave her a small piece for lunch when she was about 8 months old and she immediately came out in a rash and was very upset.  Later she had both a blood test and a skin prick test and the results were unusual but clear - she had a huge allergy to salmon, no allergy to tuna and a medium allergy to white fish. So we've steered clear of fish and seafood ever since.
Our naturopath however has been asking us to try Eva on some fish for the last few years and we've been incredibly reluctant.  He suggested that her allergy to salmon may have been tested using salmon from farmed fish that has been given all kinds of foods and dyes that she's reacting to, not the actual fish.  But anaphylaxis isn't something we really want to test.  At least not unless we're parked out the front of the Emergency Ward at the hospital with a nurse and epi-pen on hand.
But lately Eva's been having some health issues that her naturopath thinks can be entirely overcome with a healthy dose of fish oil.  So we took home a bottle of it, flavoured orange and coming from mackerel and sardine and promptly left it in the back of the fridge.  The last fortnight though Eva's symptoms got worse and we rang the naturopath who told us that the fish oil could help her but only if she was actually ingesting it.  Clearly keeping it in the fridge on stand-by isn't effective!
So I started with a  small drop on Eva's back and she had no reaction.  The next day I put a drop on her cheek and she had no reaction.  The day after that I put a tiny smear on her lip.  No reaction.  Then we put a tiny smear in her food.  And again, no reaction.  At this point we should have given her about a 1/16th of a teaspoon in her lunch so we could observe her throughout the afternoon.  But somehow the wires between Eva's dad and I got crossed and Eva had a 1/4 teaspoon in her dinner then went promptly to bed.  I was a nervous wreck.  But it turned out beautifully.  She's now able to tolerate a full 1/2 teaspoon and other than a small pimply rash on her cheek she's been absolutely fine.  And her symptoms have reduced significantly.  It's really, quite honestly, nothing short of amazing.

Monday, April 1, 2013

It's been a while

 It's been a long while between blog posts... and yet I have had so much to say.  Sometimes I just can't seem to get the words that are swirling around my head out and into the computer.  Trying to do it whilst having Eva in her first year at school, a mainstream school, has been too hard hence the break.  So I'll get back into it slowly...
It's been a pretty good first term at school.  Very busy, frightening at times, surprising a lot of the time and we feel very strongly she's in the right place. The school has been a glorious anomaly in that when they use the word inclusion they actually mean inclusion. This word, along with 'diversity'  is used far too liberally by schools and institutions that really have no idea.  It's been great to see a place walking the talk!
Life at home has been revolving around surviving school (lots of coffee and plenty of pow-wows) but also what to get up to on these Easter holidays.  We've had appointments with new service providers, had appointments with the usual therapists and doctors, been to an amazing workshop on Inclusion in Education and a not-so-amazing trip to the Emergency Room of the hospital when Eva's head cold turned into a struggle to breathe and suspected pneumonia.  It wasn't, luckily, and Eva was back at school within a few days and being swamped by her gang of friends.  This was followed by the Easter bonnet parade last week. Hat below!