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.

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.

"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!

http://www.newswise.com/articles/view/576365/?sc=dwhn

http://journals.lww.com/topicsingeriatricrehabilitation/Abstract/2011/04000/Yoga_Based_Maneuver_Effectively_Treats_Rotator.10.aspx

And there is a podcast of the interview with Dr Fishman on this link:
http://www.peoplespharmacy.com/2012/11/26/yoga-headstand-soothes-shoulder-pain/

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
salt

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

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.

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!

Chatty

There have been stages in Eva's life that she's been extremely chatty.  I don't mean using words or making any sense to me, but that she makes noises that have the intonation of normal conversation and she looks at me as though I should be understanding what she's saying.  Clearly in her mind she's trying her best to chat.  

When she was a baby this chattiness was most prevalent at night.  We'd hear her at around 2am most mornings happily talking away to herself in the dark.  When I mentioned this to her doctor she suggested that the dark and quiet environment lent itself to Eva being able to concentrate on making sounds.  But over the recent summer holidays Eva seemed to become a bit quieter.  Or was it me?  I find it hard keeping up a stream of chat with Eva when she doesn't talk back and it's easy to fall into being very much in my brain - replying to emails, pre-empting discussions or just mindless list-making of things to do.  I'm sure she gets bored by me and I sometimes fail to notice that I'm not talking out loud.  But starting school has pulled Eva into a world of non-stop chatter from her peers and it's clearly doing her the world of good.  The other day as I was asking about school I mentioned a particular little boy I'd seen talking to her.  It set her off on probably the longest chat I've ever heard in daylight!  I can't possibly imagine what she was telling me but it clearly entertained her. As does he!

Warms the cockles

This morning when I brought Eva into class there was a cacophony of little voices saying "Eva!" "Eva's here!" and about 5 girls ran up and helped me walk her over to her chair on the floor ready for the morning class.  They almost trampled each other trying to sit next to her and were holding Eva's hands, helping her glasses stay on and generally fussing over her. She had the loveliest smile on her face but I'm sure I had an even bigger one.  
It's so heart-warming to see her loved  and cared-for by her classmates. It was such a fear of mine, when I first enrolled her in a mainstream kindy and school, that she would get teased or stared at or just not have any friends.  The absolute opposite is true.
And we seem to be making progress with Eva's special-ed teacher and have a meeting scheduled for this afternoon to talk about everything.
Happy.

nits, notes and no-shows.

School has been... well...interesting thus far.
I truly felt like the mum of a regular little school-kid last week when I discovered nits in Eva's hair for the first time. And I freaked.  I had to ring my sister and text friends for tips on how to get rid of them since she's never had them before and I had no idea what to do.  An afternoon with my sis, a bottle of Hedrin and an hour (at least) of combing later and we have completed stage one of what I now realise will be a long and highly-repeatable road!
The actual school stuff though - going, learning and being - is a LOT harder.  I wish I could fix that with a fine-tooth comb.  Eva is in a mainstream school that has a special education unit in it.  It means that there are trained special-ed teachers around to offer advice and assistance to class teachers on how to adapt curriculum etc but also a space for Eva to go to for physio or speech therapy or a place to just chill-out if she needs. But it's a pretty dowdy space.  It looks like it's not had much love or energy for a long time and the teachers seem to be perpetually running from one end of school to the other to assist students.  Clearly they are understaffed but perhaps the lack of cohesion in their workroom is leading to chaos elsewhere. Who knows.
For our little part of the school, Eva has one special-ed teacher who goes between the four Prep classes to assist the students with disabilities that range from mild speech delay to autism to cerebral palsy. She's new and youngish and when she suggested I come in for a half day so she could observe me with Eva and ask questions I was pretty impressed. However in my first hour in there she sat and helped another child, stared into space, ran through the next months worth of curriculum to a boy who clearly needed help just writing an 'a' then ran off to another classroom.  I was about to lose all hope until a new teacher arrived who sat me down and asked me all the questions I assumed the special-ed teacher would have. It was great to hear her ask the kinds of questions that will help them work with Eva and understand her physical limitations and also her ability to learn. Except that I then found out she is a volunteer and will only work one day a week with Eva.
Waste of my time?  Maybe... the information I shared will get passed on but it's the special-ed teacher who needs to hear it and understand it.
So I decided to arrange an appointment with her and Eva's class teacher so we could all be on the same page. It was the morning after the nit-showdown and we were in a frenzy to get out of the door in time for the meeting scheduled at 8.15am.  On our way there we found out that the she had called in sick just 5 minutes prior. Eva's class teacher met with us alone and we don't have much to fault with her. She is adept at including Eva and using the yes/no card, she treats Eva like all the other kids while making concessions for her inability to raise her hand or talk. But she naturally does need help from the special-ed teacher with the intricacies of using the communication book we made for Eva and adapting questions and curriculum to suit Eva's communication abilities. 
I've also tried to instigate a diary that goes back and forth between school (the spcial-ed teacher) and home with just three points per day on what has been done in class. This is so I can ask Eva about what she's done during the day without having to ask a million questions before I hit on what's actually been done. I don't have the option of asking 'what have you done today darling' and getting an answer. And sure, most kids probably say "nothing" even when they can talk, but still...  At first, notes were left on Eva's health and happiness throughout the day which although lovely wasn't the point of the diary. When I asked again for some notes on the day I was met with some resistance as 'there wouldn't be time to do that every day'. When I pursued it as just a couple of easy dot-point notes I instead got paragraphs that were written over the following few days spaces. Again, not what I asked for. I've been so clear and direct I'm wondering where I've gone wrong!
I've been trying to be objective and understanding about how the special-ed teacher might be coping at a new school with 8 kids under her wing and a busy schedule. I've been restrained in my conversations with her and with the school because I don't want to be a nuisance parent. But we are about to head into week four and she still knows so little about Eva.  It's not so much that Eva is missing out on learning but more that a major aspect of school - interaction with her peers - is being severely stifled by lack of interest in how she communicates.  
* postscript - we've since met with Eva's special-ed teacher and we had a thorough conversation about Eva and about how Rett affects her as well.  And it seems as though she's been doing her own research which is actually really lovely to see.  It's such a rare syndrome and it's great to know she's willing to learn about it.  There's a long road ahead for all of us and it's making me feel much calmer now that she's on the same page as us. Maybe she always was and it was just me feeling overwhelmed by school...  That of course is always a possibility but regardless if it benefits Eva then it's win win.