Tuesday, January 31, 2012

Photo A Day - Day 31

Last day today!



Thanks for sharing our January with us!

I've really enjoyed the Photo A Day challenge - and I would quite like to keep it going except I have a feeling life is about to get very busy with school and work and kidney transplants - and besides photos of us doing home work and laundry and other 'every day activities' really aren't that interesting.

Thanks to everyone who has followed along with our January photos - maybe we'll do it again next year!

Monday, January 30, 2012

Photo A Day - Day 30

Not hard to guess what I would choose for today's photo...



Today was back to school for my big girl - her first day in Year 2.

I felt very out of practise sending her off to school this morning - I couldn't remember what I needed to pack - but I figured if she was wearing her uniform and had some lunch and a full pencil case then she should be OK for the first day.

How did your little ones go on their first day back?

Sunday, January 29, 2012

Photo A Day - Day 29

Today's photo is of my gorgeous Ashlea.


She is here to remind you all that it is not OK to use the R-word.

Ever.

She is the one that is hurt by its use.

I am the one that is hurt by its use.

It's not OK.

Please spread the word to end the word.

Saturday, January 28, 2012

Photo A Day - Day 28



These holidays I have been torturing Emma encouraging Emma to read more.

I have had to resort to bribery and corruption to get the job done.  Reading is not her 'thing'. Maths is more her thing.  And computer games.

It helped that I found her favourite book at the shops in time for Christmas.  Can anyone else remember reading this?  I remember reading it in 3rd class.  Now that Emma has her own copy it will save her from repeatedly borrowing it from the school library.

PS If anyone sees Skylanders figurines in the shops let me know - they are the promised reward and I can't find them anywhere!  She's nearly finished her reading chart!!

Friday, January 27, 2012

Photo A Day - Day 27



Today was back to school preparation day in our house.

Pencils were labelled.

Uniforms were purchased and labelled.

Lunch boxes & drink bottles were labelled.

I think we're just about ready to go back.

As much as a lot of my friends are hanging out for their kids to go back to school I really like school holidays.  I really like not having to be up and out the door early every day.  I really like not having to do the school pick every day.  I really like having the chance to catch up with friends. I really REALLY like not having to do homework.

I'm a bit scared about the idea of having to do homework with 3 kids - getting child number one to do it has been hard enough!

Wish me luck - Emma starts back on Monday and Ashlea and Audrey the week after.

Thursday, January 26, 2012

Photo A Day - Day 26

Happy Australia Day!


The Australia Day Extravaganza in our area was cancelled due to the rain so we stayed home today and made Anzac biscuits (wrong holiday I know but still typically Australian) and had an indoor picnic with some other Aussie treats.  Even Ashlea tried to eat lick sniff a Twistie.

An extra bonus was that the kids don't particularly like the Anzac bickies so I get to eat the whole batch myself.  Pretty happy about that :)

Wednesday, January 25, 2012

Tuesday, January 24, 2012

Photo A Day - Day 24

What happens when I work from home...



Little Miss Chatterbox plays the Wii, Iggle Piggle plays her iPad and my little fairy flits around playing and imagining and creating.  Oh and STUFF ends up strewn all over the floor.

They aren't the quietest of mice so I do spend a fair bit of time apologising to people about the level of background noise when I'm on the phone.  Today I had to tell someone I'd call them back because Ashlea was having a Teletubby Emergency (the wrong episode was on and she was not happy about it).

Thank goodness for super-neighbour Kate who took them for a couple of hours today.

Monday, January 23, 2012

Photo A Day - Day 23

Today Ashlea is bringing you a community service announcement.



Last year at the RIDBC Christmas party I got to talking to one of the firemen who had helped bring Santa to the party (he always arrives by firetruck).  He was from our local fire station so I asked him if we should make ourselves known to them so that in an emergency they would know we had someone with a disability in the house.

This is what he told me to do - and I thought it was fantastic advice - which is why I am sharing it with all of you.

He said the best thing to do is to leave a note in your fuse box for the firies.  The first place the firemen go in an emergency is to the fuse box to make sure the power is switched off to your house.  No one is allowed in to fight the fire until they know the power is off.

Since that conversation I have left a note in our fuse box for the firemen.  Hopefully it will never need to see the light of day, but in case of an emergency the crew will be aware of Ashlea and her needs.

Our letter has a basic diagram of the house with a note attached explaining how many people are in the house (2 adults and 3 children downstairs and 1 adult upstairs).  It also says in BIG LETTERS that there is a child with a disability in Bedroom 1.  I have included a photo of Ashlea's bed as it has a special safety clasp that they would not be expecting and also a note saying that Ashlea is attached to a feeding pump and they need to disconnect her or cut the tubing before they try and run out of the house with her.  I also have the other exit doors also marked on my map.

So - that is Ashlea's community service fire safety tip.  I think it is a good idea for ALL families - at least to have a basic layout of the house as well as the number of people that live there - but for families like ours it is essential that emergency services know that Ashlea needs special help.

Sunday, January 22, 2012

Photo A Day - Day 22

Meet my neighbour Kate.



She is all kinds of awesome.

We hit the jackpot when Kate and her family moved in next door.  She bakes.  She minds my children.  Even though we have only been neighbours for just over a year she helps me out a lot.

In March Kate is going to do the world's greatest shave and shave ALL her hair off to raise money for people with blood cancer and their families.

Here is what she says about it:
My family has been touched by many different types of cancer, with my mum and cousin Wendy passing away, and my uncles Roy and Edwin still fighting on. So I really feel for other people and their families who are facing this terrible disease.

Lets all band together to care for other cancer sufferers, and use our bad experiences to create hopeful ones for others.
Please consider sponsoring Kate - if you are interested you can do so by clicking here.

PS You will see her again on the blog in March - with no hair!!

Saturday, January 21, 2012

Photo A Day - Day 21



Today we made cockroach donkey poo DATE scones.

I made Audrey do all the work so I would have a chance to take my 'photo of the day' - otherwise you would have been subjected to a photo of my washing pile as today's picture.

She was happy to oblige and did a great job - in spite of the fact that we used some baking powder that got missed in Thursday's clean out.  Put it this way - I'm pretty sure the powder was already several years old when we moved here.  Over 4 years ago.  So the scones may have turned out more like rock cakes.  Or maybe just rocks.

We ate them anyway :)

Friday, January 20, 2012

Photo A Day - Day 20

Today's photo is ....


DATES.

Because I know the new proposed transplant date.

Apologies for the picture - I do realise it looks like a pile of cockroaches bodies - but when I tried to photograph an individual date it looked like something much worse than a cockroach.

Back to the date.  I am going to tell you what it is - I just need to have a little whinge first.

Today Ashlea had her ultrasound appointment at the hospital to check her arteries and veins because of all the lines she had in them while in the NICU

They decided to try using chloral hydrate for sedation which turned out to be a BIG mistake.  It made Ashlea quite agitated - she was crawling around in her bed all woozy and wobbly and in danger of hurting herself.  She was taken to ultrasound and left with no nurse to supervise her even though she had been sedated (they were short staffed was the excuse).  I made sure I monitored her but really that is not the paren'ts resposibility!  They tried to start the scan but about 1/4 of the way though Ashlea announced "I'M AWAKE" and pushed the sonographer away.  I insisted on wheeling her back to the ward in the wheelchair as she was unsafe on the bed and was given a lecture by the nurse (the one who hadn't stayed to supervise) about how it is not hospital protocol and I would have to accept responsibility if anything happened.

Anyway after that debacle and the doctor threatening to reschedule they eventually agreed to try midazolam and gas and it worked wonderfully well.  Once the renal registrar heard about what had happened in the morning she arranged a nurse to manage the gas and another registrar to supervise Ashlea throughout the procedure.   The midaz and nitrous worked really well - Ashlea started to wake up towards the end - and with about a minute to go announced "I FINISHED".

Fair enough.  After that we did bloods and saw the kidney specialist.  I know you've been very patient reading all these words but just wanting to know the transplant date - I'm nearly there!

Today's blood results were:

Creatinine: 504 (a new record high for her)
Urea: 18 (slightly improved from last time)

And now to the bit you've been waiting for!  The date we are working towards is April the 26th.  Of course as you know things are always subject to change but it is looking like we will have a transplant in April.  Murray sees his doctor next month to get the final approval - and then he will see the surgeon and do a final crossmatch in March which will hopefully come back with good results in time for April.

April 26th is the first week of term 2 so at least Ashlea will get to attend school for one term before surgery.  She will probably be off for all of term 2.

There you have it.  For those who have scrolled down just to find the date I'll say it again - APRIL 26.  For those who read the whole rant - thank you for listening!

Thursday, January 19, 2012

Photo A Day - Day 19



Well, the excitement continues apace at our house.

I cleaned out the pantry the other day.  Not because I particularly had a desire to clean out the pantry, more because every time I opened the door a small flock of moths would fly out.

Seeing as this is a task I undertake very infrequently I always find interesting treasures.  The most interesting thing this time was a bottle of fancy balsamic vinegar with a use by date of 2008.

Now, as gross as you all may think that is, I am positive I am not the only one with such treasures hidden in my cupboard.  So I am throwing open a challenge - who can beat my November 2008 use-by date??  I don't know if there will be a prize for the winner - but maybe you and your product could be the photo of the day??

Wednesday, January 18, 2012

Photo A Day - Day 18


Today's photo of the day says it all.

We were supposed to be finding out this Friday if Murray can be Ashlea's donor.  I got a call yesterday from the transplant coordinator letting me know that the doctor is away and the appointment has been rescheduled.

FOR A MONTH.

AAARRRGGGGHHHHH.

Are they trying to drive me crazy???

The good news from my chat with the co-ordinator is that he can't see anything in Murray's results that might rule him out as the donor.  Obviously he is not the one with the final say - but he said things are looking good.

It would have been nice to have that certainty though!

Ashlea has a day of hospital appointments on Friday and hopefully after that I will be able to post our new transplant date.  I already know what it is - but seeing as things are always subject to change - I am waiting until after we see what Ashlea's blood work is like and we have spoken to her doctor to confirm.

Watch this space.

Tuesday, January 17, 2012

Photo A Day - Day 17



Back to work today.

This is my little corner of the lounge room where I work from home.

You will notice the essentials on my desk - computer, headset, paper, pens, pepsi max and a mars bar.  Oh - and is that blogger open on my screen as well?

Surely not.

Monday, January 16, 2012

Photo A Day - Day 16



Today Ashlea had botox.

In the past she has had her calves and hamstrings injected to reduce the symptoms of spasticity. This time she had her hip adductors done as well (you can see the botox going in to her adductor in this picture). Her adductors are so tight they are pulling her hips out of alignment. Hip problems are very common in children with CP - and often require major surgery to correct.

I am really hoping Ashlea won't have to go down this road, but her last hip x-ray showed her hips are starting to migrate out of their sockets.

For those of you who pray - please pray for her hips!  We really want them to stay in place!!

Sorry if the photo is a little confronting - but it gives you an idea of what my little poppet (and many of her friends) have to go through on a regular basis.  This is just one of the many medical procedures she will have this year.

Sunday, January 15, 2012

Photo A Day - Day 15

Today's photo is of Ashlea - enjoying one of life's simple pleasures - sliding down a slippery dip.


I chose this photo for today because it shows Ashlea having fun - enjoying life, playing, generally having a good time.

Enjoying her life.

I chose this picture because over the last few days there has been an internet outcry over the case of a young girl with an intellectual disability whose parents were told she was not suitable to receive a kidney transplant because of her 'mental retardation' and 'poor quality of life'.  You can read the parents story here.

I was infuriated when I read how the family were treated and how the doctors dismissed their child as someone with no quality of life and therefore not deserving of a transplant.  Why some people assume that just because a person has a disability (or even multiple disabilities) has no quality of life never ceases to amaze me.  There is no denying that they have a 'different' life than so called 'normal' people, but that doesn't mean it is automatically bad.

I was also terrified when I read the article because there is part of me that worries that one day Ashlea will come up against a doctor like that.  I wonder if she were on the public waiting list for a kidney if the issue of 'who is more deserving' of receiving an organ would arise.

We have had the 'We need to talk about what is best for Ashlea' discussion with her doctors, but thankfully none of them have ever implied that she shouldn't have a transplant.  I do worry though that if she weren't receiving a kidney from a family member that it might come into play. Would a panel of 'experts' who had never met Ashlea look at her and based on her 'on paper' description decide that she was less deserving of an organ than someone who is able to go on and 'contribute' to society.  As if only people who 'make a contribution' are valuable.

It is such a difficult issue.  Are the doctors playing God in denying this child an organ?  Are we playing God by insisting that Ashlea gets an organ?  What a minefield.

What I do know is that Ashlea would die without a new kidney.  I believe she has a good quality of life - definitely good enough for us to put her through a transplant to ensure it continues.  I hope and pray for this girl's family that they are able to find a doctor that will give their child the treatment she needs.

There is a petition you can sign here if you're interested and as always a great post on the issue from Ellen at Love That Max here.

Saturday, January 14, 2012

Photo A Day - Day 14

Two photos for you today - and neither of them taken by me.  Is that cheating?  To make up for it you will get to see something very rare indeed - a photo of ME - and I didn't even straighten my hair!

Today we celebrated my Aunty Doris's 90th birthday (yes, she is the daughter of my Grandfather with the good genes).

The first photo is of Aunty Doris and I...taken 40 years ago...


The second one was taken today.


Unfortunately I'm not clever enough at using Photoshop to remove my wrinkles or that guy's butt in the background.

Happy birthday Aunty Doris - I look forward to celebrating your 100th birthday in another 10 years!

Friday, January 13, 2012

Photo A Day - Day 13


It's Emma's turn to be the photo of the day.

My first born child.

Friendly.  Fun loving.  Silly.  Playful.

Extremely strong willed.

A skilled negotiator.

She is the one I lie awake at night and worry about the most in some ways.

She's kind of highly strung.  Of course I would have absolutely no idea where she gets that from, but speaking from experience (other people's of course) it really does make life just that much harder.  I really think I need a new parenting strategy with her - one that will bring out the best in her while also teaching her to manage her emotions.

Anyone got any tips?

Thursday, January 12, 2012

Photo A Day - Day 12



Every January my sister and I go to the tennis.

I quite like going to live sporting events - my sister not so much - but she gets free tickets through her work (and access to the corporate dining room & bar) so off we go.

The exciting news from today's game was that the tennis sponsor that gives out the free tickets is now a major sponsor of the Australian Open - so maybe, just maybe we will get a couple of tickets to come to Melbourne next January for the tennis.

I already know who I'll be visiting while in Melbourne if it happens!!!

Wednesday, January 11, 2012

Photo A Day - Day 11


Ducks!

The holidays wouldn't be complete without at least one duck encounter.  We spent this morning with some kindred spirits who happen to have a family (several families?) of ducks that frequent their backyard.

Ashlea's first words on waking up this morning?

Ducks!  Ducks!  We going to see the ducks!!!

Thanks for having us Susan and family!

Tuesday, January 10, 2012

Photo A Day - Day 10



Meet Mr Lizard.

He spent the night at our place last night after coming in uninvited and refusing to leave - even after Murray tried to flush him out with Blondie's Heart of Glass.

Fortunately none of us woke up screaming in the night from him scurrying over us.  He turned up this morning.  In the bathroom.  While I was in the shower.

I think Murray and the girls were quite delighted by the thought of the lizard terrorising me in the shower.  They managed to contain their excitement and came to my rescue.  Mr Lizard has been released back into the yard.

I know where he lives though.

Anyone got a cat we can borrow???

Monday, January 9, 2012

Photo A Day - Day 9


Today's photo is a very hastily snapped picture of my birthday cake.  I had to take it quickly as there were many small children eagerly waiting to help me blow out the candles and eat the cake.

As usual I was prepared to let my birthday slide by unnoticed, but decided at the last minute to have an impromptu morning tea with a few friends.  As you can see we have accurately depicted my age with the number of candles :)

A big thanks to Jodie for making the cake - it was very tasty!

Sunday, January 8, 2012

Photo A Day - Day 8



My gorgeous Ashlea - smiling for the camera.  I love her cheeky personality.

Having Ashlea has completely changed my life.  I know a lot of people would assume that many of the changes that come with having a child with a disability are negative - but let me assure you they are not.  The vast majority are positive.  I am so grateful for the clarity that Ashlea brings to my life.  She really makes it easy to see what is and isn't important.  Worldly success and achievements are not what is important.  Love is what is important.  Relationships are what are important.  Having a sure and certain hope for eternity is what is important.  Ashlea isn't going to be 'successful' in the way this world defines success - but that doesn't matter.  She is loved.  She loves.  She will be in heaven one day - with a perfectly healed body and mind.  That is what is important.

I can't imagine life without this gorgeous girl.

Saturday, January 7, 2012

Photo A Day - Day 7

The simple pleasures - dinner with friends followed by milo and ice cream for dessert.


You know you want some now...

Friday, January 6, 2012

Photo A Day - Day 6

Today's photo is of the humble peach.



I bought some of these yesterday to take to my dear friend K who finds herself stuck in hospital on bed rest.  Of course I also took chocolate and trashy mags as they are the staples of surviving bed rest, but I do remember from my time in hospital that it was very hard to find a piece of fresh fruit so I took fruit as well.

I am surprised - although probably shouldn't be - at how much of the emotion from my time on bed rest has come back to haunt me since I visited her.  Not that that is a bad thing of course - what is the point of going through something like that if you can't then be there for someone else when they go through it?

I was reminded though of how awful bed rest is.  You have hours and hours of time to yourself and only one thing to think about - 'will my baby (or babies) live?'

In some ways it feels like I have never left that environment.  Ever since my pregnancy with the twins went pear-shaped I have worried about whether or not Ashlea will live.  In some ways I was so naive when I was on bed rest - I didn't realise what a turning point in my life it was.  It marked the end of my 'old' life - life as I had known it - and the beginning of this 'new' life.

I hope and pray that for my friend it is just a blip in an otherwise 'ordinary' life, but for those of you who pray please keep her and her family in your prayers - she is facing potentially months of bed rest to keep her little one in.

(Don't worry - I checked with her before posting this).

Thursday, January 5, 2012

Photo A Day - Day 5

Today's photo is a phone pic snapped by my sister.

This is how I have spent the last 2 days....shoe shopping for the children.  I broke it down into two trips to make it easier to manage (both mentally and financially).

Here is Ashlea trying on some school shoes.  SO CUTE.  I can't believe she is nearly ready for big school.  We didn't end up getting the pair of shoes in the picture as I found some others that fit better (and of course cost more - her school shoes alone were more expensive than Emma and Audrey's school AND sports shoes put together).

Wednesday, January 4, 2012

Photo A Day - Day 4

Today's photo is a photo of a photo.


This is my beloved Grandfather.  He was born on this day in 1897 and passed away Boxing Day 1998 - yep that's right - he died a week short of his 102nd birthday.

I'm hoping I've got some of his genes!!!

Tuesday, January 3, 2012

Photo A Day - Day 3

My gorgeous Audrey.


So easy going.  Such a sweet natured, 'easy' child - sandwiched between Emma and Ashlea.  I love you Audrey!

Photo A Day - Day 2

It finally feels like summer here in Sydney so we have spent the last few days in the wading pool.


Who thinks its time we got a real pool???

Photo A Day - Day 1

I'm inspired by my friend Ally to post a photo a day in January.  She is following a specific list of things to photograph - but I am just going to go with random photos I have taken.  I'll probably fall off the wagon when I go back to work but we'll give it a go.

Day 1.  New Year's Day.


What better way to spend New Year's Day than under the neighbour's sprinkler.

Fortunately we have lovely neighbours who are very forgiving of the fact that my children do not see the fence as an obstacle to playing in their backyard :)