Thursday, May 30, 2013

Thankful Thursday 30th May

This week I am thankful for...

- Julie;

Practically Perfect...

- being in the presence of Julie;

- getting to sing with Julie (the whole audience - not just me);

- a hair cut - the first one in a year;

- a night out without kids;

- the chance to catch up with some kidney mums who get it.  Sometimes I wonder if we sound like we are speaking another language when we start in on our kidney chatter;

- the chance to catch up with some special needs mums who get it.  Our conversation included such statements as $665 for x?  Wow that's cheap!  It's all relative in the land of disability - we decided that if it is less than $1000 that is the non-special-needs equivalent of being less than $100;

- finding out about some electricity discounts we are eligible for that I didn't know about;

- Thermie has been ordered;

- living close to the hospital so that when I run out of meds 4 days before our next appointment it isn't TOO onerous a task to make a special trip - and the thoughtful pharmacist who arranged outside scripts for some of the meds so that now there are only two that HAVE to come from the hospital - which will hopefully save me having to make quite so many extra trips;

- a productive excursion with the school OT to JB Hifi - we are going to try and get Ashlea this touch screen computer for school.  I want Ashlea to start doing all her school work on the computer.  Realistically she is never going to be able to hand write - learning to use a computer is a much more achievable goal.

We got excited by how far back the screen goes.  We
will NOT be using that keyboard or mouse though!


Tuesday, May 28, 2013

Random post - so random it includes the national anthem...

So...aside from attempting to be thankful on Thursdays this blog has been pretty quiet lately.

It's hard to know what to write about.  Now that the drama of the transplant has died down we are just getting on with life.  Most of last year was spent in a bit of a fog but I have tried to get back on top of things this year.  I figure this is 'how things are' now so I should get on with life.

The problem is 'how things are' is not always easy to accept.  Lately in particular the black dog has been nipping at my heels (biting my arse more like it) as the weight of responsibility feels overwhelming at times.  Those are the times I feel the need to visit Ikea or browse the Tupperware catalogue.  Surely creating order in one small space of my life will make the rest of it feel ordered???

In the middle of difficult days though I can count on Ashlea to come out with something so totally random it makes me laugh and lifts my spirits.

Here is today's offering... Do you think perhaps something is getting lost in translation???




PS I know when I insert youtube clips they don't get included when the blog gets emailed so I am trying to insert this one directly.  Let's see if it makes a difference.

Thursday, May 23, 2013

Thankful Thursday and A Bike Ride

Ashlea had a clinic appointment today.  Unlike most clinic appointments this was a FUN one - at the bike clinic run by Technical Aid for the Disabled.  TAD are a great organisation of volunteers that make or modify all sorts of equipment for people living with disability. You may remember they made Ashlea's bed.

Have a look at this little bit of awesome bike riding.  This is Ashlea's first time EVER on a bike.  She loved it - she even kind of got the idea of pedalling.  The concept of steering is still a work in progress but she had so much fun - we will definitely be buying her a bike like this!




Today I am thankful for:

- great organisations like TAD who make this possible;

- Ashlea's progress - not just her physical ability to pedal the bike, but her understanding and enjoyment of being able to ride a bike just like her sisters;

- generous gifts given that allow us to buy the bike without having to wait for funding.  I haven't yet spent all the money Murray's work gave us last year - I think this bike is a very worthy cause for it to go towards;

- the opportunity to take Murray to a Brain Injury Australia meeting so we could meet other people living with Acquired Brain Injury;

- flu shots done and dusted;

- more people who humour Ashlea's Tom obsession;

Tom having his flu shot

Don't worry - he also got a turn on the bike

- plans drawn up and signed for the great bathroom modification;

- a quick trip to IKEA - seeing all those storage options is just so therapeutic;

- only TWO SLEEPS until Julie!!!



Writing Prompt

Thankful Thursday

Thursday, May 16, 2013

Thankful Thursday May 16

This week I am thankful for:

- tupperware and the order it brings to a previously chaotic pantry;

Before - chaotic pantry...

During... entire kitchen chaotic

After - order is restored.

- the therapeutic value of a clean pantry - although there is clearly room for more Tupperware in there don't you think?

- the chance to go to Equip on Saturday and be encouraged with thousands of other women;

- a lovely Mother's Day and some useful gifts from the girls - 2 mugs, a photo frame and a notepad;

- my friends who were in charge of the school Mother's Day stall this year - they definitely improved the standard of the merchandise - I'm sure I'm not the only mother that thanks them;

- our awesome Sunday School teachers.  On Sunday Ashlea attended Sunday School in her walker for the first time.  I was a little concerned seeing as the leaders of the group are babies themselves (or am I just getting old??).  I needn't have worried.  Every time I spied on Ashlea to see how she was going I got a glimpse of her being wonderfully included with all the other children.  One time she was sitting on the floor among all the kids rather than being in her wheelchair and therefore slightly separate from everyone.  Another time they were playing 'the train game' and Ashlea was in her walker leading the train with the other children following behind her, and the last time I spied on her she was sitting at one of the tables doing craft.  What a wonderful mother's day gift - seeing her fully included as part of the group;

- skipping home work to go and jump in some crunchy Autumn leaves;



- how far Ashlea has come in regards to sensory tolerance;

Full Body Leaf Crunching Experience

- a photo win for Mum - 3 children all looking at the camera!



And smiling even!





Thankful Thursday

Monday, May 13, 2013

Le Carb-tastrophe

I have gained a few kilos over the last month.

Most of you who know me in real life will know this is not a problem as I am a skinny little runt.

The problem is that I NEVER gain weight.  It doesn't matter how stressed I am or how good life is my weight does not budge - up or down - ever.  Well maybe except when pregnant.

So the fact that I have started gaining weight is significant.

Now that I am in my 40's have I become - shock horror - a NORMAL person???

Will I now have to pay attention to what I eat?

And please don't tell me that I'll have to start...EXERCISING?

Not many of my friends (aka 'normal people') are sympathetic to my new plight.  In fact most of them are thinking (or saying straight to my face) ha ha sucked in - welcome to the real world.

Say it isn't so!!!

Saturday, May 11, 2013

Le Cat-astrophe

Tom has lost his voice.  He no longer repeats
what you say (which is the whole point of Tom)



We tried Emergency Surgery


But our efforts were in vain.

What magic words do you think I used to soothe my distressed child?

You guessed it.

It's OK Ashlea - I'll buy another one*


* You may remember that last time Ashlea killed a Tom I couldn't work out how to ship another one to Australia. I have since found a way to do it and now not only does Ashlea own Tom she also owns Ben, Angela, Ginger and Singing Tom.  We are single handedly keeping the company in business!

Thursday, May 9, 2013

Thankful Thursday

It's been a challenging week in our house with recalcitrant behaviour from both my 9 year old daughter and my 14 year old car but there is still much to be thankful for, including:

- botox treatments to reduce the spasticity in Ashlea's legs;

Tom had to come to botox too


- government programs that cover the cost of expensive treatments like botox;

- doctors and nurses with a sense of humour.  When we rolled Ashlea over to begin the injections she did the most massive fart right at the doctor.  So forceful was it that the nurse who is completely deaf still knew about it because she felt the reverberations;

- the wonders of midazolam;

All midaz'd up and ready to go...Mummy was a
wee bit jealous...

- packages in the mail - especially when they come from friends living in the chocolate capital of the world;

Yum - who wants to help me eat it all??

- the anticipation of Mother's Day.  The girls LOVE buying me crap treasures at the school stall. This year I tried to encourage them to choose something USEFUL.  Ashlea decided she wanted to buy me a Dodo - a Dodo that I would then give to her.  So in actual fact what I am getting on Mother's Day is a tantrum when there is no Dodo for her;

- buying myself some new pyjamas for Mother's Day so I've got something nice to wear when I crawl back into bed to try to get away from the tantrum;

- the blessing it is to have my children and my mum to celebrate Mother's Day with.


** I'm not sure if there will be a link up for Thankful Thursday this week - the host's daughter went to be with Jesus last weekend and the funeral is today.  Please keep them in your prayers**

Thursday, May 2, 2013

Thankful Thursday

This week I am thankful for:

- the lovely lads at our local Lions Club who raised money to pay for our spa shelter:


Before the shelter...NO SHADE...

Now...SHADE!

- the lads also put another coat of paint on our ramp and cubby house to allow them to survive the elements a little longer;

The lads doing some painting...

- Trevor (the lad in blue with the suspiciously clean paint brush) for all his hard work organising this;

- the friend who mentioned us to Trevor in the first place;

- the fact that their generous gift allowed us to use other generous gifts we've been given to put some shelter out the back:

Before...no shade...
Now - SHADE - not much but better than nothing!

(If you're wondering why we've become obsessed with shade it's because Ashlea's medications increase her risk of sunburn while being immune suppressed increases your chance of skin cancer - it's a double whammy).

- the promise of an ordered pantry and an end to the moth plague that a Tupperware party offers;

- the chance for a quiet day here and there now that the girls are back at school;

- continued stability for Ashlea's kidney function and an uneventful clinic visit;

- the many people who humour Ashlea's requests.  You may remember that last week Tom went to the dentist.  This week he has:
Had his blood drawn...

Been weighed...

Had his new kidney palpated...
Had his blood pressure taken (by Ashlea)...


And had a haircut.

 Never underestimate the persuasive powers of a cute child in a wheelchair :)