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.

Thursday, May 23, 2013

Losing the Trifecta

I feel very lucky to be able to call my doctor-sister to ask her to come over and check on Eva when she's sick. She's been living overseas for the last 3 1/2 years and we had survived without having her around but what a relief now to have her so close.  Being a Paediatric Emergency Specialist, she is used to serious life-threatening cases and I sometimes feel like I shouldn't worry her with trivial things like a cold/cough that's made Eva start breathing faster than usual.  But this morning I'm so glad I did.  Eva was struggling to breathe and it turns out she has suddenly developed asthma.  Considering the family history of allergies and asthma on one side and eczema on the other and considering she's already had eczema (severe for about a year) and has anaphylactic reactions to about 4 allergens it was, as my sister said, "some bizarre stroke of luck that she didn't already have asthma." Well I guess that luck ran out and the revolting trifecta is now complete.
What was most disconcerting was to hear her say I should have taken Eva to the hospital well before she got there.  I had asthma as a child and I remember the horrible feeling of not being able to breathe properly; feeling like I was breathing through a narrow straw.  Courtesy of my sis I now have a "Wheeze Action Plan" that I can add to my "Anaphylaxis plan" and my mental list of "What is Rett syndrome stuff and what is just being a kid".  I'm also now acutely aware of when I need to go straight to the hospital.
Naturally (being me) I spent a good part of the day feeling guilty that I hadn't done something sooner then a good part of the day feeling guilty that I was thinking to myself 'Oh just great, here's one more thing to add to the list of her pills and potions and one more anxiety I have about her.' Can't win.
Eva however is significantly improved and by this afternoon was sitting up in bed watching Sesame Street with just a wheezy little giggle now and then.

Monday, May 13, 2013

A milestone

 Eva lost her first tooth last week and it was finally a milestone she could share with everyone else.  She grinned happily for the camera which is something that doesn't happen too often.  The tooth is missing but the tooth fairy still came and so Eva's grinning continues as she shows family and friends her missing tooth and answers the obligatory questions about whether the tooth fairy came and how much she left etc.  Having had so few 'normal' milestones to share over the years I think we are both finding it sweet.

Wednesday, May 8, 2013

"I don't know why it works, it just does"

This is what an American doctor says about healing a rotator cuff injury with yoga.  I've been listening to his podcast about the benefits of yoga for healing because I'm yet again in pain.  It seems to be an all too common problem at the moment in our family.  First it was my knee, then Roger's shoulder, then my back, then his shoulder and now my shoulder and his knee!  It sounds like we are frail and yet the opposite is true.  We both exercise, stretch, do weights, meditate when we can and eat as healthily as possible most of the time. But lifting, moving, adjusting, turning and hauling a 17kg child on a daily basis will do that to you. And Eva is such a solid weight with little muscle strength to help us with transitions. "Stop flopping Eva!" is a useless phrase on high-rotation in our household.

So after spending time and money seeing a physio for this and finding that my shoulder was still so sore I did some research online and found Dr Loren Fishman's answer to a rotator cuff injury. And it's to do a headstand!  Being no stranger to yoga I'm intrigued and I'm going to try it, so I'll update this down the track and hopefully be able to say "I don't know why it works, it just does."

Here are the articles for anyone either interested or sceptical or sore!

And there is a podcast of the interview with Dr Fishman on this link:

Sunday, May 5, 2013

Inadvertent therapy - Pesto

Last weekend we were given a huge bunch of basil and decided to make pesto.  Eva was in a great mood, seemed keen to help and as we were doing the hand-over-hand task of pulling all the leaves off I realised what a great therapy tool it was.  Not only were we doing something useful but it smelled wonderful and was going to be tasty at the end.  Eva helped pull the leaves off, drop them in a colander then held the stick blender and pressed the button to blend it. And she enjoyed it!

I'm almost 5 years into doing therapy with Eva and I have to say I find it pretty boring for the most part.   It feels like a job.  I mean really, if you had extreme difficulty holding anything would you enjoy doing a therapy task that involves picking up coloured balls and dropping them in a box?  No wonder I spent the early years of Eva's life feeling simultaneously frustrated that the tasks were so boringly difficult and then guilty when I made her do them.

Cooking however seems like a brilliant way to incorporate sensory therapy, occupational therapy, fine motor skills, science (changing one thing into another through cooking it) and a healthy dose of fun that ends in a meal.  And since I actually enjoy cooking as well it seems to me the best way to ensure therapy gets done without it feeling like therapy. For both of us.

So here is Eva's dairy-free pesto recipe.  As you can see she was pretty happy with the result.

Double quantities as per basil available... add fresh kale too for a zesty kick!

1 cup basil leaves (firmly pressed in)
1/2 cup olive oil
30-40 grams lightly toasted pine nuts
2 small cloves fresh garlic

Add all ingredients to a blender or use a stick blender to make a fine paste. Enjoy on everything!