I'm thinking of starting a blog...

Day 40 - School...The Ugly

2012-02-16T16:11:00.002+11:00

Our first nit note.

Give me strength.

Day 39 - School...The Bad

2012-02-15T15:50:00.001+11:00

This beast and I have had to become re-acquainted.

12 shirts and 6 pairs of culottes. Need I say more?

Do you think anyone will notice if I just iron the front of their clothes?

Is it bad that even for their Very First Ever day at Big School I only ironed the front???

Day 38 - School...The Good

2012-02-14T13:14:00.000+11:00

This humble teacup says it all really.

One of the great things about having all 3 girls at school is that hopefully I will get a little bit of time to relax on my days off work.

So far this free time I have been dreaming about for the last 6 years has proved to be a little elusive. By the time I take Ashlea to appointments or go up to school for things I end up having to make up lost work time on Thursdays and Fridays.

As long as I have that illusion of free time though I'm OK! The possibility that I might actually be able to chill out and do something for myself keeps me going.

So - school mums - how do you spend your precious 5 1/2 hours while the kids are at school??? I need some coffee dates otherwise I am likely to end up grocery shopping and doing school canteen - and while they are both good things to do they hardly qualify as relaxing!

Day 37 - A Special Visitor

2012-02-12T17:33:00.002+11:00

We had a very special visitor today - Ashlea's preschool teacher from last year.

It was so lovely to see her and be able to fill her in on how great our first week at school was (which I'm sure had much to do with all the hard work she did with Ashlea last year).

We all miss preschool and Mrs Cook very much.

When it was time for her to leave Ashlea whispered to me:

"I go home with Mrs Cook"

Day 36 - Thursdays with Kate

2012-02-10T00:57:00.001+11:00

This delicious plate of lasagne was made for us by our neighbour Kate - (aka Super Neighbour Kate).

Occasionally over the holidays Kate and I have pooled our resources and had communal dinners with all our children. Sometimes (mostly) she cooks, sometimes I cook. Most importantly one of us gets to NOT cook.

We have decided to make it a regular event. Actually Kate offered to cook dinner for my kids once every week, but I don't want it to be a one way street with the help always coming in my direction. I want to be able to help her out a bit too. Us mums have to stick together.

Don't forget you can still sponsor Kate in the World's Greatest Shave - it's less than 4 weeks until ALL her hair comes off.

Day 35 - Big Kidney News

2012-02-08T17:00:00.000+11:00

Today's photo kind of says it all.

I scribbled this note yesterday.

The nurse from the Renal Treatment Centre left a message on our home phone while I was working to ask if it was OK to book Murray's final cross match for the week of the 12th of March - "seeing as the transplant is scheduled for the 29th of March".

WHAT???

I couldn't call them back fast enough! Sure enough the child who was booked for March has had to postpone so they have moved Ashlea up - assuming Murray gets the rubber stamp of approval from the doctor.

Wow.

That's next month! 50 days to be exact.

The countdown is back on!

Photo A Day - Day 34

2012-02-07T20:45:00.001+11:00

One of the wonderful side benefits of having a child with a disability is getting to meet other amazing families who also live in the land of disability.

Some I have met in real life and some I only know through the internet - what I do know is that this journey would be far more difficult without their support and understanding. One thing I love in particular is how we all delight in each other's children and their progress.

Today's photo is of Ashlea reading her new book - Santa Duck - sent to us by one of the many friends that we would never have otherwise met if it weren't for disability.

Thanks Di - Ashlea loves her book - it arrived just as we got home from school this afternoon.

And thanks to all of the amazing mums and dads who share this journey with us. I couldn't do it without you!!

Big School!!!

2012-02-06T17:10:00.001+11:00

The first day of kindy was a great success!

Audrey was so excited when she woke up this morning. She has been counting the sleeps until her first day of school. She happily went to her classroom and had a lovely day.

Ashlea was pretty happy with the idea of school - but when I left her she started howling. Even though she was upset I left her with the teachers and let them settle her as sometimes she puts on a special performance just for me. Sure enough when I tiptoed past her classroom a little while later she was happily sitting at her desk doing some work (while humming Old McDonald Had A Farm - they are going to get SO over that song).

What a day.

A day for celebrating how far my precious miracles have come.

A day for celebrating this little chick's life - that not only is she alive, but she is thriving.

A day for looking to the future and wondering what else Ashlea - and Emma and Audrey - might achieve.

Photo A Day - Day 33

2012-02-05T17:45:00.001+11:00

Today's photo is a VERY unflattering photo of me - but as a community service announcement I am posting it for all of you.

Learn From My Fail:

The smallest person in the house can NOT under any circumstances be trusted with the shower hose - not even for a split second while you grab the shampoo bottle.

And yes my t-shirt does say "Take my advice - I don't use it".

Maybe I should take my own advice from now on - this is not the first time she has got me!!!

Photo A Day - Day 32

2012-02-04T18:46:00.002+11:00

I can't help myself - I miss the photo a day challenge!

Audrey mastered a new trick today:

Don't worry - I know I won't have time for a photo every day - but I might try and do some more as I really enjoy it.

3 Sleeps...

2012-02-03T20:03:00.000+11:00

It is only 3 more sleeps until my once teeny tiny babies start big school.

The first day of school is a big milestone for any child - but when your child's life has hung in the balance it takes on a whole new level of significance.

Audrey AND Ashlea are both starting school.

Together.

At the same school.

Amazing.

Audrey is very excited and loves her teacher.

Ashlea knows she is going to school but has been heard to say on occasion this week:

"I not going to big school"

"I staying home"

Hmmm. I have other ideas about that sunshine.

Ashlea will only be attending 9-12 for the first couple of weeks while she gets used to school and they get all the equipment set up for the new children in the support class - although our awesome preschool let us take all of Ashlea's stuff with us so I am going to be turning up for school with this in my boot:

Well actually maybe the kids won't be in the boot - just the two chairs, the walker and the wheelchair.

Emma has been back at school for a week and also has a really good teacher. She and Audrey will be in the same classes as my friend K's children (she's the one on bed rest - only 16 weeks to go...) so hopefully between us we can manage 5 school children, K's bed rest and Ashlea's transplant along with the 200 school drop offs and pick ups required this year.

Seriously are there 400 school runs a year? No wonder that gets old very quickly.

Watch this space - I'll get cute first day of school pics up as soon as I can on Monday!

Photo A Day - Day 31

2012-01-31T17:18:00.000+11:00

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!

Photo A Day - Day 30

2012-01-30T15:34:00.000+11:00

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?

Photo A Day - Day 29

2012-01-29T19:30:00.000+11:00

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.

Photo A Day - Day 28

2012-01-28T17:25:00.000+11:00

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!!

Photo A Day - Day 27

2012-01-27T18:22:00.001+11:00

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.

Photo A Day - Day 26

2012-01-26T16:34:00.002+11:00

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 :)

Photo A Day - Day 25

2012-01-25T19:50:00.000+11:00

Rain, Rain, Go Away!

Before the yard goes completely underwater!!

Photo A Day - Day 24

2012-01-24T17:35:00.001+11:00

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.

Photo A Day - Day 23

2012-01-23T19:50:00.000+11:00

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.

Photo A Day - Day 22

2012-01-22T17:49:00.002+11:00

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!!

Photo A Day - Day 21

2012-01-21T17:09:00.000+11:00

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 :)

Photo A Day - Day 20

2012-01-20T16:53:00.000+11:00

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!

Photo A Day - Day 19

2012-01-19T13:59:00.002+11:00

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??

Photo A Day - Day 18

2012-01-18T15:47:00.001+11:00

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.

Photo A Day - Day 17

2012-01-17T17:40:00.000+11:00

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.

Photo A Day - Day 16

2012-01-16T18:11:00.001+11:00

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.

Photo A Day - Day 15

2012-01-15T12:30:00.004+11:00

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.

Photo A Day - Day 14

2012-01-14T18:54:00.000+11:00

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!

Photo A Day - Day 13

2012-01-13T20:57:00.000+11:00

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?

Photo A Day - Day 12

2012-01-12T00:00:00.014+11:00

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!!!

Photo A Day - Day 11

2012-01-11T17:07:00.002+11:00

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!

Photo A Day - Day 10

2012-01-10T22:29:00.001+11:00

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???

Photo A Day - Day 9

2012-01-09T12:47:00.000+11:00

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!

Photo A Day - Day 8

2012-01-08T21:10:00.000+11:00

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.

Photo A Day - Day 7

2012-01-07T21:20:00.002+11:00

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

You know you want some now...

Photo A Day - Day 6

2012-01-06T18:57:00.000+11:00

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).

Photo A Day - Day 5

2012-01-05T16:43:00.000+11:00

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).

Photo A Day - Day 4

2012-01-04T19:18:00.001+11:00

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!!!

Photo A Day - Day 3

2012-01-03T21:49:00.000+11:00

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

2012-01-03T21:41:00.000+11:00

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

2012-01-03T21:37:00.000+11:00

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 :)

New Year's Humbug

2011-12-31T11:04:00.002+11:00

It's that time of year again.

By now most of you probably know that I am too much of a pessimist to enjoy New Year's Eve. I'm never the one looking forward with wonder at what fabulous things might happen in the next 12 months. Usually with fear and trepidation I am worrying about what will go wrong! Will we be healthy at the end of another year? Will there be any accidents? Will we all still be alive at the end of another 12 months?

It is highlighted even more this year knowing that Ashlea will be either having a kidney transplant or starting dialysis in 2012.

Far out.

The other night I did some kidney googling (never a good idea really). I didn't know that once you get to the stage of needing 'kidney replacement therapy' - ie either a transplant or dialysis - that if you don't have that therapy you will die quite quickly. If you don't pass much urine you can only survive for a couple of weeks at most. If you pass a reasonable amount of urine you can last for a couple of months.

That's not very long. For some reason I had always thought that you could last longer.

It makes it seem much more urgent that Ashlea gets a kidney. I can't believe that my child - even though she is so well - is potentially also so close to death.

So, yeah, that is where my head is this New Year's Eve. Bah humbug!

Rather than drag you all into the 'dark and twisty' place with me, how about we review the year in pictures? Because there were actually a lot of good things that happened this year!

Here are my gorgeous girls in January...

In February Emma went into year 1 and Audrey and Ashlea returned to preschool...

In March Emma turned 7

And in April Ashlea and Audrey turned 5

In May we had the girls birthday parties where we sang that wretched song...

Cuddles in June...

In July the photographic evidence tells me we stayed in our pyjamas. A lot...

In August we had a few encounters with the object of our affections...

In September Ashlea got her ipad. How did we ever survive without it??

In October Ashlea decided it was time she learnt to play the Wii...(although the real triumph is that she is sitting on her own on a regular chair):

In November I decided that maybe these two did look a little alike after all...

Now it is December...and Christmas....and our house is once again full of ducks...

Are any of you doing resolutions this year? I'm not - I never keep them anyway so I'm going to save myself the trouble this year!

The only resolution is to get through 2012 - whatever that may bring. And maybe to stay away from google...

I am Ducky hear me Quack!

2011-12-27T13:02:00.000+11:00

Anyone want to take a guess what Ashlea got for Christmas???

Many, MANY ducks.

Most of you know that she wants to BE a duck one day - now she is one step closer....

I hope you all had a lovely Christmas!

Christmas Newsletter 2011

2011-12-24T11:10:00.000+11:00

For those who didn't receive this via snail mail or email here is this year's Christmas newsletter. If you want a copy in your letter box next year please send me your address! Also - I posted the letters quite late this year so there are a few of you reading from overseas who should wait and check your mail box in the next few days for your copy rather than read this now!

Well – it’s that time of year already – so here is our news!

JANUARY saw a quiet start to the year. We all had a few weeks holiday after Christmas during which time Al turned 40, 39, 29 again and Ashlea’s wheelchair accessible cubby house was installed.

FEBRUARY marked the return to school with Emma in Year 1 and Ashlea and Audrey back at preschool. Emma has had a great year at school – as well as making good progress in reading, writing and maths, Emma has learnt gardening, sewing and chicken wrangling.

In MARCH Murray and Alison both had cross matches with Ashlea to see if either one could be a suitable kidney donor for her. The results came back with good news – both cross matches were NEGATIVE (a good thing) and both Murray and Alison proved to be a good tissue match with Ashlea.

In APRIL Alison underwent all the relevant medical tests to see if she could become Ashlea’s donor – and PASSED. We booked a tentative transplant date for November with Al as the donor. Also in APRIL Ashlea and Audrey had their 5 year developmental assessments at RPA. It was lovely to go back and see our favourite doctors and nurses – it was extra special this year as we took Ashlea’s walking frame with us so that she could WALK into the nursery – the very same nursery she nearly didn’t make it home from.

In MAY we had the girls belated birthday parties with a huge jumping castle in the backyard.

In JUNE we started to think about school for Ashlea and Audrey for next year. Ashlea has been offered a place in the support class at our local public school so will attend school with Emma and Audrey next year which we are very happy about. Are our tiny little babies really all grown up and ready for big school???

In JULY, after more than 20 years attending Christchurch Gladesville we made the move to a church closer to home – Norwest Anglican. While it was very sad to leave Gladesville, we have been made to feel very welcome at Norwest and are loving being only 5 minutes from church.

In AUGUST Ashlea and Audrey participated in their final preschool church service – actually Murray participated in that one too when he got roped into singing Twinkle Twinkle Little Star on stage in front of the entire church – but I digress. The girls have both loved preschool so much. It has been a fantastic experience for them both – but particularly for Ashlea who has been fully included in all preschool activities with Audrey.

In SEPTEMBER we had our first ever family holiday - to Bear Cottage - where we had a lovely, relaxing week. The children loved having craft on tap, a spa and access to the ice cream fridge. Murray and Al enjoyed not having to cook or clean for a week and having all of Ashlea’s needs being taken care of by the staff.

In OCTOBER Alison and Ashlea did a final cross match before the surgery and were knocked for six when the result came back POSITIVE (a bad thing). A positive cross match means that the recipient (Ashlea) has antibodies specific to the donor and would destroy any organ donated by that person. The transplant was postponed until a new donor is found. Ashlea’s kidney function is now quite poor (her creatinine is in the mid-400s whereas this time last year it was in the mid 200s). She is holding her own though and we are still hopeful of getting to transplant without needing dialysis.

In NOVEMBER Murray had the first of his tests to see if he could become Ashlea’s kidney donor. They had a NEGATIVE cross match (a good thing remember) and he passed his glucose tolerance test.

It is now DECEMBER and time to say good bye to preschool and many of Ashlea’s early intervention services who have been with us for many years. We will be very sad to say good bye to these people who have helped Ashlea so much and been such a significant part of our journey, but we are also looking forward to the new adventure of school. Also in DECEMBER Murray will have the remainder of his kidney testing to see if he can be Ashlea’s donor – though not until the 20th so there is no way we can include the results in this newsletter! Don’t worry we’ll keep you posted!!

The YEAR AHEAD promises many things. Audrey and Ashlea will start kindergarten and Emma Year 2. Al is hoping that this will mean a slightly less busy schedule as Ashlea will have a lot of her therapies at school. Al will be working Monday to Wednesday next year and is hoping to be available for cups of tea and chatting on Thursdays and Fridays. Call if you’re free!

If Murray gets approved as Ashlea’s donor hopefully we can plan a kidney transplant for around the middle of the year.

Thank you to all of those who continue to support us – both in prayer and practical ways – it really does make a huge difference to our lives. For those of you who pray, please pray for us as we face the challenges of the year ahead – for Ashlea to find a suitable donor, for her to not need dialysis in the meantime, for the surgery to go well, for a smooth recovery… for so many things. But most importantly please pray that we would trust God in all this and that we would be able to fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

And how good is that unseen eternal going to be???

Merry Christmas!!

Love Alison, Murray, Emma, Ashlea & Audrey

Those of you who read regularly will know that Murray has had his kidney tests and passed with flying colours. He will see the doctor in late January to find out if he can be Ashlea's kidney donor. Watch this space!!!

And the number is...

2011-12-22T16:42:00.000+11:00

After harassing the transplant co-ordinator for the last 24 hours to get Murray's kidney function results from Tuesday I finally have the numbers!

His GFR is 126 (that's good by the way). Mine was 111, Ashlea's is barely 8. As I understand it, your GFR is a measure of your kidney function. You are considered to have healthy kidneys if your GFR is over 90 and you have no protein in your urine.

So, he has healthy kidney function. Also his kidneys looked normal on the scan and they share the load quite evenly (the right does 52% of the work and the left 48%).

I know we can't jump the gun and it is still up to the kidney specialist to make the final decision, but at least he is in with a chance.

Now after news like that I'm finally starting to get into the Christmas spirit!

Stinky Bottom Blood Test Results

2011-12-19T17:45:00.001+11:00

Today was stinky-bottom-blood-test day.

As much as Ashlea doesn't like blood test day, I have to say she has gone from being a screaming thrashing wild cat to a well behaved angel for blood tests. Who would have thought?? She is now so familiar with them that she barely even utters a whimper. While I am very grateful that blood tests are now a lot easier, it is also a little sad that she has them so frequently that she is used to it.

Today's results have shown yet another increase in her creatinine (which I predicted would happen when we increased her calories at her last appointment).

Creatinine: 488 (up from 419 - quite a jump in 4 weeks)
Urea: 20.8 (up from 14.9)
Sodium: 137
Haemoglobin: 113

So, the kidney function continues to decline. I bumped into Ashlea's specialist while we were at the hospital and she said they are trying to book Ashlea's transplant for March or April next year - they are just waiting on Murray's test results.

Which brings us to tomorrow. Murray gets his turn at being radioactive tomorrow as he does his kidney testing. He has a nuclear scan of his kidneys in the morning, then an ecg and chest x-ray, and then he finishes the day off with a CT scan of his kidneys. We won't have all the results back until January but the nuclear kidney scan should be back in a few days. That is the scan that determines what his level of kidney function is. The cut off to be a donor is 90. Mine is 111. Ashlea's is 8 at the most.

For those of you who pray - please pray that the tests will go smoothly. There are a number of blood tests and injections involved so please pray that Murray is able to get through all the tests without fainting. It is quite a gruelling day.

And watch this space! Even though we won't have the final word from the doctor on whether he can donate until his appointment on the 20th January, the GFR will give us an idea of whether he has a chance. I'll post the number as soon as I know it!!!

BEST preschool concert ever!!!

2011-12-15T16:35:00.001+11:00

Today was Ashlea and Audrey's final preschool concert.

Sob, sob, sob.

I can't believe our 2 years of preschool are coming to an end.

We finished our time at preschool on a high note with our best ever preschool concert. I had been worried about how it would go as at the rehearsal this morning lets just say things were not pretty. At concert time though - Ashlea was a star.

The first song the kids sang was Colin Buchanan's Aussie Jingle Bells - with Ashlea and her walker starring as the rusty holden ute (sorry to any overseas readers who have no idea what that means). Perhaps the cute pictures will explain...

Here she is driving her 'ute':

And doing the actions to the songs...

Audrey shone as an angel...

And the girls received their preschool 'diplomas'..

Usually the teachers call the children up one by one but there is no clapping until the end. When Ashlea went up though the other parents gave her a little spontaneous round of applause...

What a great way to end preschool!

Once again the question comes up - how do you thank people like this? People who have not just done their job by teaching your child, but who have loved and encouraged and delighted in your child and the progress they have made. I can't bear the thought of saying good-bye. Ashlea has been so loved and included at preschool - and not just by the staff. Her class this year have embraced her - they fight over who gets to sit next to her and she has been invited to many, many birthday parties. It has been a wonderful year.

Thank you St Luke's preschool - and particularly Mrs Cook. We will miss you very much!

More Santa

2011-12-11T20:27:00.001+11:00

Today was the Bear Cottage Christmas party.

There were the usual activities for the kids...face painting, a jumping castle, baby animals (ducks!)...

...and even camel rides.

I felt like a mean mummy for not letting Ashlea go on the camel. She wanted to go on it - but seeing as she is not very good at holding on I just couldn't bring myself to let her. Emma and Audrey were torn between loving the camel ride and being ready to wet their pants in terror.

Anyway, it was a nice day - the kids had a great time and it was good to 'get into the Christmas spirit' a little, because I tell you, so far this year - I'm not feeling it. Please tell me I'm not the only one!

RIDBC Graduation

2011-12-07T13:33:00.001+11:00

Today was the RIDBC Christmas Party - our last one ever. Sob.

This is the service Ashlea has been with the longest. They are the ones who 'get her' the most - and they have made a huge impact on her life. It is very sad to say good-bye. Thankfully we still have one more visit with Ashlea's therapist so we didn't have to say our final, final good-bye today.

Here is Ashlea with the lovely Ana:

The girls got to sit on Santa's knee. In real life Santa was very friendly I'm just not sure it's translated in this photo...

At the end of year party they always have a graduation for the children who are leaving the service to go to Big School. I can't believe that it is our turn to graduate! Ashlea has come so far since starting with the service and has achieved far more than any of us would have predicted in those early days.

She got to wear a graduation cap. You can imagine how long that stayed on her head can't you??

And then she walked up in her walker to get her certificate and trophy from Ana.

Do you want to know that we had to lure her in to walking up the front with that little green duck Ana is holding or would you like to picture Ashlea being co-operative for her big moment?

What a milestone.

How do you say good-bye to people who have had such an impact on your child's life? How do you thank them for everything they've done? Just saying 'thank-you' doesn't seem enough, but I don't know if I can even put into words how much we appreciate the work they do. So what I am going to do instead is say that if you ever have any spare change that you are looking to donate, please give it to an organisation like the Royal Institute for Deaf and Blind Children. They do amazing work.

Thank you Ana!!!

House Guests

2011-12-03T20:26:00.000+11:00

We have 2 house guests staying with us this weekend.

Seriously it is cuteness overload in our house at the moment. You can imagine how excited the girls are - Ashlea in particular. I am worried that the poor ducklings may end up being killed with kindness.

While they were having this little swim Ashlea (aside from trying to hop in with them) tried to pick up one of the ducks. Problem is they have squirmy little bodies and she doesn't have the fine motor control to pick them up easily. Suffice it to say that it is lucky for the duck that I was on standby to rescue him as he was held under the water while she was trying to pick him up.

The kids are having a ball.

The ducks and I? We're a little stressed!

Twin-ness

2011-11-30T15:57:00.001+11:00

As you all know one of the things I find hardest about Ashlea's disabilities is the loss of her twinship with Audrey. Well, I guess it isn't lost altogether, but it is definitely different to what 'might have been'.

At the moment I think my twins look the most alike they ever have. I have been trying to get a picture of the two of them together so I can savour it. After the transplant Ashlea's looks will change again as the steroids will make her face look puffy. I hate that it is just one more thing that will effect their twin-ship. They already look so different from each other (for identical twins).

I am savouring these months before the surgery while they look a little more alike. What do you think? Would you pick them for identical twins??

Just don't pay attention to the height difference...

Link to Special Exposure Wednesday

Wow - he PASSED

2011-11-28T16:14:00.001+11:00

Wow. I just got off the phone with the transplant coordinator.

Murray passed the Glucose Tolerance Test.

He passed easily. His fasting glucose was 5.0 and at the end of the two hours it was 6.0. By comparison mine was 4.5 for fasting and 7.7 after 2 hours (the cut off is 7.8).

Who would have thought???

I'm trying really hard not to get my hopes up too high that he will be able to donate as he still has to pass all the renal scans, but at least he's in with a chance.

The coordinator is going to go ahead and book the rest of the tests - hopefully we can get it all done before Christmas. What a gift that would be - knowing that Ashlea is getting a kidney.

OK - I have to confess - my hopes are already UP!!

Negative Crossmatch

2011-11-28T07:10:00.000+11:00

Murray's crossmatch results have finally come back - and they are NEGATIVE (that's a good thing remember). Negative means there is no reaction between Ashlea and Murray.

This morning - maybe even while you are reading this - Murray will be having his glucose tolerance test. This will be his big hurdle to being Ashlea's donor as there is a very strong history of Type 2 diabetes in his family. So...we shall wait and see what the test results bring. If he passes this one he will then go on to have the kidney function tests that I had earlier in the year.

For those of you who pray, please pray that Murray remains conscious throughout the procedure. He is really not good with needles and blood and has a habit of fainting. I'd really like him not to faint - I don't want the test called off! I need to know if he can donate or not!

I'll update when we have the results.

What do you think of this???

2011-11-25T09:53:00.000+11:00

Last week Murray and I received an email from a married couple. We don't know these people personally but have friends in common with them. Anyway they emailed us basically enquiring about whether we would be interested in donating our excess IVF embryos to them.

Talk about not the sort of thing you expect to pop into your inbox when you're at work!!!

We were floored and haven't yet replied.

I know that ethically speaking for us the only options are to either have the babies ourselves (there are 3 embryos) or to donate them to another Christian couple. I can not imagine having another baby. Or three. I just really don't think I could put my body through that again - let alone the emotional toll of post natal craziness that seems to last for years afterwards.

However I also cannot imagine giving the embryos away. I have to be honest and say the reason we have been hanging on to them is partly because I have always viewed them as my 'insurance policy'. I have always thought that 'if anything happens to Ashlea'....I might want to have another baby. Now that I am 40 I really don't think that even if something did happen to Ashlea I would want to have another baby - but it is nice to have that option. If we DID decide we wanted another baby the embryos are there - ready to go.

I think for the time being we are just going to keep paying for the storage of the embryos and deal with the question of what to do with them at a later date. I don't feel comfortable giving them away just yet - and the idea of giving them to someone that we might run into occasionally is a little disturbing. My girls all look so alike - I can't imagine bumping into the family and seeing them with children the spitting image of my own. In some ways I think it would be easier to donate to a complete stranger - in another country - then we wouldn't have to see the children. Our genetic children - being parented by someone else.

I don't know. It's a tricky one. On the one hand I am very strongly against anything that would involve the destruction of the embryos, but on the other hand I just can't seem to commit to doing what I think is ethically the better option. Not yet anyway.

I think I'm going to file it in the 'can't deal with that right now - got too much else going on' category. In the future we will be forced to make a decision, but for now I am going to stick my head back in the sand. I do feel very sorry for the couple making the request - I can understand their desperation to have a child. I'm just not yet sure if I'm comfortable with the idea of them having my child.

Kidney Appointment

2011-11-22T13:50:00.003+11:00

Ashlea had a kidney check up today - her first with her new specialist - and her first since the non-transplant.

It's funny because in a way it has been a relief to have a temporary reprieve from the stress of surgery. It's a relief to be able to look forward to a 'normal' Christmas. It's almost like the reprieve is permanent - we're not having it now and maybe we'll never need to have it?? Phew - we dodged that bullet.

Nothing like a morning at the hospital to remind me that Ashlea still does have kidney failure and we will still be needing that transplant.

Unfortunately I also managed to read these statistics on the KHA website in the last couple of days as well...(these are all Australian statistics)

50 people die every day with kidney related disease
In 2009, diseases of the kidney and urinary tract were the 9th leading cause of death in Australia with 3,312 deaths
Overall there has been a 23% increase in deaths from kidney disease over the past 10 years, killing more people each year than breast cancer (2,799), prostate cancer (3,111) or even road deaths (1,417)

Sometimes I can kid myself that kidney disease isn't that serious. Ashlea doesn't look that sick. She doesn't act sick. It is easy to forget that kidney disease can be a killer.

Talk about a quick trip back to reality.

Yes she still has kidney failure. Yes she still needs a transplant.

For today at least, her numbers are stable.

Creatinine 419
Urea: 14.9
Sodium 139
Potassium 4.8
Haemoglobin 113

Not much change from a month ago which is nice - although that is possibly because Ashlea hasn't been growing. As a result we need to increase her calories - which often results in an increase in creatinine. It's a vicious cycle - when she is growing well her kidney function suffers, but when her kidney function is stable it is because she is not growing (or losing weight like she is at the moment).

We don't have any further news on the transplant. Murray's crossmatch results are due back any day now and then he goes for his glucose tolerance test next Monday. I will repeat my crossmatch with Ashlea in the next month or so and if that comes back clear we may see about scheduling a new transplant date.

It's Not Transplant Day

2011-11-17T08:00:00.000+11:00

Well....it's the 17th November and it's definitely not transplant day.

But it is World Prematurity Day, so the video clip I made of Ashlea especially for transplant day is still very appropriate.

When I thought the transplant was going ahead I started working on this clip of Ashlea. I have set it to Colin Buchanan's Be Strong and Courageous which I think I have mentioned before.

Some of the words of the song are:

Be strong and courageous,
The Lord of the Ages,
Holds all His littles ones safe by His side.

Be strong and courageous,
The Lord of the Ages,
Holds all His little ones safe.

Whenever I heard this song while the girls were in the NICU I would take great comfort in knowing that God was holding them safe. It didn't mean that they would be immune to any of the difficulties of the NICU - it was more that regardless of what happens in this life time I knew that God was holding them safe for all eternity. That image of Ashlea and Audrey being held safe helped me get through those early dark days in the nursery.

As Ashlea faces her kidney transplant (whenever that may be) this song will continue to give me comfort. God will continue to hold her safe - for all eternity - regardless of what happens with her kidneys.

He holds all His little ones safe.

*** Apologies to Colin for chopping out an entire verse of his song - but I didn't want the video to be too long!***

When I grow up...

2011-11-14T09:00:00.011+11:00

Ashlea came home with this delightful piece of work from preschool last week:

Can you read what it says she wants to be when she grows up? Yes...A DUCK.

Hilarious!

I love that girl!!

Ghosts

2011-11-11T10:00:00.006+11:00

I recently read this beautifully written article called The Ghosts of Children Passed. It talks about grief and acknowledging the lost children in people's lives. It's definitely worth a read - I made the mistake of reading it at work though. Don't do that. You will need tissues.

I haven't lost a child, but the idea of these ghosts of children who have passed made me think of other ghosts. I don't mean that I believe there are actual ghosts - but the article made me think of the ghosts of our children - not passed - still present, but irrevocably changed by their circumstances.

Occasionally the 'ghost' of Ashlea as she could have been still haunts me. Like in the article - for a brief moment I can picture her skipping off to big school with her twin. Or sharing twin secrets and games. Or running through the house with her sisters. Maybe it's the twin thing - although I suspect it's really a grief thing - but because Ashlea and Audrey are identical twins I have a carbon copy right in front of my eyes showing me exactly what Ashlea would have been like - could have been like - without disability.

Maybe the article also struck a chord because it mentioned school and the idea of these ghosts following families and trailing at the school gate. We have big school looming on the horizon - and once again it appears that it will be one of those transitions that serves as a reminder that things are different from how I'd imagined they'd be. I will have 2 blond haired girls starting kindergarten next year, but not in the way I initially pictured when I found out I was having identical twin girls. It's very hard not to let my mind conjure up that picture of what could have been.

It's only ever a fleeting image in my head, this other Ashlea that visits my imagination. The ghostly image of what might have been.

Do any of you still get haunted by 'what could have been?'

Funny how 'it's all still there'

2011-11-09T09:02:00.002+11:00

By the time Ashlea and Audrey came home from the NICU as little babies its pretty safe to say I was completely traumatised by what we had been through. I had post-traumatic stress flashbacks for months. Years actually. But now I feel like I have moved on. I don't still feel the effects of the trauma on a daily basis like I did in the early years. Mostly I don't give it a second thought.

Every so often though, there are little reminders that what I've been through with Ashlea has left its mark.

On the weekend I witnessed a child (not mine) have a seizure. It was just a febrile convulsion in an otherwise healthy 2 year old - but I was surprised at how much it freaked me out. They brought the child over to near where Ashlea and I were sitting, and I just had this overwhelming sense of "I have to get out of here". Especially once I knew the ambulance was coming, all I could think was "I can not watch that child be worked on". I could feel the panic rising and I made sure I got out of the way quick smart.

I think it is because I know too much. I've seen too much. I know what really goes on in hospitals and ambulances and PICUs - and I know that not everyone gets the fairytale answer.

It was a strange reaction in a way because Ashlea has never been worked on by paramedics.
She has been 'worked on' though - and because I have that image in my head of her being resuscitated - and because I can also picture some of your precious children being worked on - I couldn't watch. It takes me right back to that day - and all the thoughts and feelings that go with it.

I have the same reaction to the rescue helicopter too despite the fact my child has never been in it. I cannot see the helicopter without choking up - even if it is only the stationary half-helicopter at the Easter show. I think its because I know what goes on in there. I know its life or death when you're in there. And even though Ashlea hasn't been in there - she and I know what life and death is like.

So, even though I would now say I am no longer traumatised by our experiences in the nursery - in some ways 'it's all still there'.

I can't watch children get worked on.

Doesn't matter what it's for - I can't watch children get worked on.

I'm guessing I'm not alone in this???

PS The child was OK - seizure stopped and she didn't have to go to hospital and there were plenty of other people on hand to help out who didn't feel the need to flee the situation!

I want to go in the pool...

2011-11-06T19:31:00.001+11:00

Finally the weather in Sydney warmed up enough for us to have our first swim of the season.

Audrey, Emma and I didn't last long in the water.

Ashlea would have stayed in all day if allowed. As you can see by the picture she was not allowed.

She threw herself wholeheartedly into a very long tantrum.

This child seriously can not take no for an answer. She howled and howled.

I'm curious to know how you all handle tantrums with your children? Especially when it is a child that can't be ~~bribed~~ reasoned with.

Any tips??

Kindy Orientation

2011-11-03T21:48:00.000+11:00

This week the girls had their last kindergarten orientation visit. I can't believe they are nearly ready for big school!!

I was a little worried about how orientation would go as it was a class visit - which involved Ashlea going into the classroom. On her own. Like a big girl. I was even more concerned when I asked her that morning what she was going to do at Big School that day and she answered "Cry".

She kept her promise.

Before the classroom visit the current kindy class did a song and dance for the new students. All the new kids and parents loved it....all except for one. It was too loud. There was a meltdown. Emma's class were watching the performance from somewhere else within the school and Emma turned to her teacher and proudly said "I know who's crying - that's my sister!" She was right.

Fortunately Ashlea recovered and went to her classroom and met her teacher and some classmates. She did really well and told me afterwards "I have a good time Big School". When I arrived to get her she appeared to have everyone wrapped around her little finger - she had managed to find a toy duck to hold and had everyone singing Old McDonald Had A Farm. Audrey also went to her class and had an absolute ball. I am so happy with the teacher she has - she is lovely and gentle and encouraging - just what Audrey needs to bring her out of her shell a bit.

We're all very excited about the start of school. Oh wait - maybe that's just me???

Final Crossmatch Results

2011-11-01T08:00:00.000+11:00

Ashlea's doctor rang me yesterday to say that the final crossmatch results have come in. The results are still somewhat confusing, but it appears there may be more reason to hope than we first thought.

When the doctor got the result her first reaction was "Wow - that's weird" so she rang the Red Cross to get more information. As soon as she mentioned Ashlea's name they knew exactly who and what she was calling about as they had all been puzzled by the results too.

Sounds about right for Ashlea doesn't it???

Apparently she may have some sort of auto-antibody thing going on - possibly caused by a virus she has had. There is a chance that the auto-antibody thing is what caused the crossmatch to come back looking positive. When they ran further tests (the doctor did give me more detail but she may as well have speaking Greek - I had no idea what she was talking about) they couldn't find any other evidence of a positive crossmatch - and don't forget when we're talking crossmatches a positive is actually a BAD thing.

We are going to re-do the crossmatch as soon as we can get one booked. IF it comes back clear we may be able to go ahead with a transplant early next year - we definitely won't have time to get everything organised for November sadly. There are no vacancies on the transplant calendar until May but as usual the list is fairly fluid and if Ashlea needs her transplant sooner than one of the other waiting children she will bump them from their spot. If she continues to remain stable (which she has up to this point) she may wait a little longer.

So, what does all that mean? The short answer - I might still be able to donate - we will know for sure after we get the results of the next crossmatch. In the meantime Murray is going to start getting tested as well....just in case.

And so the rollercoaster continues - with this little glimmer of hope setting us off on the upward swing again.

An Ashlea-ism

2011-10-30T21:07:00.000+11:00

Whenever Ashlea does anything, she always declares when it's over "I have a good time at ......"

For example:
I have a good time at preschool.
I have a good time Mrs Cook (her preschool teacher).

On Wednesday Murray and Ashlea had blood taken for their cross match as the beginning of the process to see if he can give her a kidney. When she got home from the blood test she made her usual declaration:

I have a good time at hostipal (her pronunciation).
I have a good time my blood test.

She often says this after blood tests and hospital visits even though she does not like them. On Wednesday I questioned her and asked if she was really sure she like the blood test.

Her response?

Stinky bottom blood test.

Not a bad description really. We have decided that from now on in our house they shall always be known as stinky bottom blood tests!

I love my iPad!

2011-10-26T09:04:00.000+11:00

Look how clever my little chicky is. We've only had the iPad for a month and already she's a whiz!

That Teletubbies app? Best 99c I have ever spent! It's not the most educational of apps, but it has bought me so much peace and quiet that I don't care.

How am I?

2011-10-24T09:25:00.001+11:00

Gutted.

Devestated.

Can't think straight.

Feel like I can't breath.

But not despairing.

I know that God is still in control. He must just have a different plan for Ashlea's transplant.

One of my first thoughts was "God must have a plan B". But in reality, His plan is always Plan A. I don't know what the new plan is, or why this has happened but I do believe He is still in control.

It's funny, because I always say that one of the biggest lessons I learnt when the girls were in the nursery was that God is in control. He is the one that determines the number of our days - and as our creator it is His right to do so. Yet even though I say that God is the one in control, over the years I have slowly been taking back control. I have made it my mission to not just be Ashlea's mum, but to be the one responsible for keeping her alive. Not just by being a vigilant mother, but now by giving her a kidney to ensure her life continues.

I feel like this is one of those reminders from God about who is really in control.

I know many people will find this idea very unpalatable - but as a Christian I feel that I need to go on the record and say that in spite of things not turning out the way I want - I will continue to trust God.

I know there will be people who will read this and think "I don't know how you can believe in a God who could let this happen". All I can say is that I couldn't get through this without knowing that God is in control and without knowing that there is something better to come. Christians believe in heaven - where there will be no more death or mourning or crying or pain. God is looking after Ashlea - not just for this lifetime - but for all eternity. I couldn't do this - live this life with Ashlea - without that hope.

There have been many times God has looked after Ashlea in the past - in spite of my best efforts to interfere. This week I got back the results of a medical trial the girls were involved in when they were in the NICU. It was called the INIS trial and it studied whether giving IVIG (immunoglobulin - antibodies) to sick, premature babies resulted in better long term outcomes. At the time of the trial we agonised over whether to be involved - not because we didn't want to take the risk of being involved - more because we didn't want to take the risk of Ashlea not getting the IVIG. We were so hopeful she would get it and that it would help her.

She got the placebo.

Audrey got the IVIG.

When I first found out I was gutted.

What if Ashlea had got the IVIG? Would it have made a difference? Could it have helped even a little bit? How frustrating that she - the one who needed it most - got the placebo.

After awhile I started thinking about it though and I realised (and the kidney specialist confirmed) that it may have actually been a bad thing transplant-wise for Ashlea to have received the IVIG. IVIG is basically other people's antibodies - antibodies attack infections - but they also attack transplanted organs. If Ashlea had received it she would find it very hard to find a kidney she wouldn't reject.

I believe that God was looking after her through that.

What do you think? Do you believe there is a God who is in control of this world? Or do you think everything that happens is totally random?

Did she just say CANCELLED???

2011-10-20T17:26:00.000+11:00

So after posting the other day that the doctors didn't expect anything to show up on the final cross match you can bet your bottom dollar what's happened can't you?

We returned a positive cross match.

Crossmatch - The basic crossmatch test involves a mixing of cells and serum to determine whether or not the recipient of a kidney will respond to the transplanted organ by attempting to reject it.

If the cross match is NEGATIVE the transplant can go ahead as the recipient will be more likely to accept the organ.

If the crossmatch is POSITIVE the transplant cannot go ahead as it means the recipients immune system will mount an instant attack on the kidney and reject it.

And yes you did read that correctly - Ashlea and I now have a POSITIVE crossmatch meaning I can't give her my kidney as her body would reject it.

This positive crossmatch is new - the antibodies causing it are new. They weren't there 6 months ago when we did the initial cross match - they have developed in the last couple of months. The doctor thinks they could have developed when Ashlea was sick last term.

We do have one final straw to clutch at - and believe me I have a very firm hold of it.

Ashlea's results are showing that she is also showing an immune reaction to herself (don't worry - I have no idea what that means either) - because of this they are running the tests again just to make sure that it is not somehow interfering with the crossmatch results. We have to wait until next week for the final results. Until then I am going to clutch onto that straw very tightly - although the doctor didn't seem too hopeful about that.

If it is a true positive cross match it means that not only can I not give Ashlea a kidney right now - I probably can't ever give her a kidney as she is sensitized to me.

Seriously.

The next step is to wait for the final results - hopefully there has been some crazy lab mix up and this isn't really happening, but if it is a definite positive cross match the transplant is off until we can find a new donor. The doctor has already put Murray's paperwork in so he can go for the transplant work up - but even if he were approved really quickly there are no available spots in the transplant calendar until at least May.

At the very least it is looking VERY unlikely that we will have a November transplant.

Seriously.

Kidney Appointment

2011-10-18T09:05:00.015+11:00

Yesterday Ashlea had her last kidney check up before the transplant.

Her creatinine is now 423 - at every appointment it creeps higher which is reassuring in a bizarre way - it reminds me that we are doing the right thing at the right time to treat her kidney failure. It still astounds me sometimes that Ashlea only has 8% kidney function - she looks too well to be that sick (if that makes sense).

Ashlea and I also had our final crossmatch for the transplant. Why do they have to take so much blood for that? They took 7 vials of mine and 4 of Ashlea's. Is it bad that as I was walking to pathology I was hoping that Ashlea was the one needing the 7 vials taken???

The results will be back in around 2 weeks. They don't expect there to be a positive crossmatch at this late stage but they have to double check and make sure Ashlea hasn't developed any antibodies that would attack my kidney.

We still have a few more things to do before the surgery. Ashlea needs a doppler scan of her arteries and veins to check that none are blocked after having so many long lines in during her NICU stay (a long line is like an IV but it doesn't just go into a vein in the leg - it is threaded up through the body and empties near the heart somewhere). They need to make sure that any veins and arteries that get connected onto the kidney are in good condition. Unfortunately the scan can take an hour and requires the patient to lie still so it looks like we will have to do it under sedation.

We also still need to meet with the anaesthetists and do pre-admission stuff - but I don't think that happens until the week of surgery.

Even after all this time I still have moments where I can't believe this is actually happening.

To our family.

I am giving my child a kidney.

Surely that sounds like the sort of thing you hear about other people doing?

Thank You Gladesville

2011-10-16T09:41:00.001+11:00

Dear Gladesville Friends

How can this little note possibly ever thank you for all the support you have given us over our time at Gladesville – and especially over the last 5 years?

Most of you will have heard by now that we have started attending a church closer to home (only 10 years after moving into the Baulkham Hills area). Our move was initially prompted by our children’s propensity for motion sickness, but we have found in our short time attending Norwest Anglican how great it is to only live 5 minutes from church and to be a part of the local community that the church is part of.

So – we are attending Norwest Anglican now – and they have been really friendly and welcoming. But they haven’t lived the Ashlea experience with us (yet) like you all have. You have supported us from the beginning - through the most difficult time in our lives – and we are so thankful for that. It is such a wrench to leave – and to leave the history we have with all of you.

How can we thank you for everything? For all the prayers, the meals, the washing folding, the gardening? For Ashlea’s walking frame, and the ramp to our front door? For the many people who have helped Ashlea attend Noah’s? For the bible study leaders who have put up with all of our Alison’s questions???

THANK YOU. Your support has meant so much to us.

Ashlea’s kidney transplant is now very close. It is scheduled for Thursday 17^th November and we would appreciate your prayers once again. Alison will be donating a kidney to Ashlea. Please pray for the surgery to go well for both of them, and for them to both recover quickly. Please pray that the kidney will work wonderfully well and give Ashlea good kidney function for many years to come, and that Alison’s kidney function won’t suffer as a result of losing a kidney. Most importantly please pray that we would be able to trust God in all things.

With much love,

Alison, Murray, Emma, Ashlea and Audrey.

The first of the lasts....

2011-10-12T12:49:00.000+11:00

Now that Term 4 is under way we are starting to experience the first of some significant 'lasts'.

Last weeks of preschool. Last appointments with therapists who have known Ashlea for years. Last days of work on campus for me (oh yes - that working from home plan is coming to fruition). Last therapy session with the Institute for Deaf and Blind Children (RIDBC). Ashlea has such a lovely connection with all these people - it is sad that we are finishing up with them.

Don't get me wrong - I'm excited for Ashlea to start school and am looking forward to some upcoming 'firsts' as well. Next week is the first day of kindergarten orientation. My little babies are ready for big school!

It's just that I am sad to be leaving some wonderful therapists who have helped Ashlea enormously. It is a shame that these transitions are happening sooner than they usually would because of the surgery. Ashlea will miss out on some of the rites of passage that I had been looking forward to. The end of year preschool concert. The Christmas party at the RIDBC where they have a graduation ceremony for all the children going to big school. I'm so sad we will not be there for that - they have been the service we have been with the longest and Ashlea has LOVED her time with them. Every year I have had a tear in my eye watching the children graduate and imagining what it will be like when it's Ashlea's turn. Ashlea probably couldn't care less about missing the graduation, but I care about missing it! It's a big transition for me as well as for her. Some of these therapists have been with us since very early on and have shared this journey with us.

Can you tell I'm feeling nostalgic this week?

We also have our farewell visit to Gladesville (our old church) this Sunday where we have the opportunity to publicly thank everyone for all the support they have given us over the years. I'm loving going to church only 5 minutes from home, but it is sad to officially say good bye to people at Gladesville who we have such history with. We are kind of in that awkward phase of changing churches - we have 'moved in' and started to make friends but we don't yet have any close friends that we have history with. No one there knows the full Ashlea story and what we've been through. There aren't people that we know well enough to say "Oh My Goodness the transplant is in a month and I'm freaking out!!!!". Well, I guess I could say that (although we all know I never will) - but it's not the same as when you say that to someone who knows you well. Or when someone knows you so well that you don't even have to say it.

Sigh.

The times they are a changin'.

Sleep! Sleep! Wherefore art thou???

2011-10-07T01:14:00.001+11:00

It's 1am.

I'm awake.

Again.

I have a little sleep confession...

I'm not very good at it.

Especially when stressed.

During the day I'm fine. I can do all the things I need to do and barely give the transplant a second thought.

But at night it's a different story. It's weird - because I'm still not really thinking about the transplant. Not consciously anyway.

But I can feel it as a tight ball of worry in my chest. And it keeps me awake.

Every.Single.Night.

Dammit - now I can hear Ashlea's pump beeping...just as well I'm awake hey?

So thankful

2011-10-04T09:30:00.003+11:00

I'm so thankful for this gorgeous girl.

I'm so thankful for the opportunity to give her a kidney - and hopefully a much longer life.

None of the children we met during our stay at Bear Cottage are likely to see their 20th birthday. I know there are no guarantees about how long Ashlea will live, but I am so thankful that she has the option of a kidney transplant.

She has options.

Most of the children we met last week are out of options.

I have a lot to be thankful for.

Bear Cottage Highlights

2011-10-01T20:52:00.000+10:00

The beach...

Music Therapy - This lady was AWESOME. We are definitely going to take up music therapy again - Ashlea loved it...

A trip to the zoo - Ashlea got to see her favourite animal....

Eating ice cream at the beach - in the freezing cold...

And of course Frankie....

The kids have almost got me convinced that we need an assistance dog. Someone tell me I'm crazy!

Special Exposure Wednesday: More Waves!

2011-09-28T21:52:00.000+10:00

Ashlea has just discovered how fun the beach is.

Her latest refrain?

I need to go in the ocean!

More waves!!!

For more Special Exposure Wednesday click here.

Bear Cottage - first few days

2011-09-26T22:27:00.002+10:00

We are living it up down here at Bear Cottage.

Ashlea has a new best friend:

There is craft on tap:

We have been out to Ocean World at Manly (so not wheelchair accessible for anyone thinking of visiting - but Bear Cottage residents get free admission):

We've been to the beach:

And have made sure we've had at least one spa a day:

It has been great to have a break from our everyday routine. As Ashlea is sleeping upstairs with the nurses they have taken full responsibility for her care. She gets bathed, dressed and fed by them - and they even make up her formula and give medications. Did I mention there is also a chef so we are being well fed too!

It's a pretty full on place to come for respite though. There is a family here at the moment for end of life care with their child. There are a number of children who aren't here for end of life care right now, but you know they will be in the future. When you check in you have to sign consent forms regarding your wishes if your child deteriorates - full resuscitation or palliative care with no heroic measures. That is full on. There was no option on the form to write HELL YES SHE IS FOR FULL RESUSCITATION, so I just ticked the appropriate box and signed.

Seriously, Ashlea's issues are small potatoes in this alternate universe. She is the child that the nursing assistants are given to look after as she is so well - relatively speaking. So many people with 'normal lives' look at us and think they could never cope with what we have to cope with - but there are so many people in much worse situations than us. I have the luxury of being able to distance myself a little bit as I know that once Ashlea has her transplant and - God willing - a healthy working kidney, she will no longer be eligible to come to Bear Cottage. Most of the other families who are here this week don't have that luxury. We are very fortunate.

It's a weird situation. Yes we are having a good break and enjoying not having to worry about cooking and cleaning, but at the same time there is the reminder of illness and disability all around.

Our plans for the rest of the week involve getting out and about as much as possible to make the most of the opportunity to have a family holiday. We hope to get to the zoo and the movies (all compliments of Bear Cottage which is very nice) and definitely back to the beach.

Meet the surgeon

2011-09-22T22:01:00.000+10:00

Today we met the surgeon who will do Ashlea's half of the transplant. It was good to meet him and get some questions answered.

The most important thing we established today is that he thinks he will be able to fit my kidney into the lower right part of Ashlea's tummy rather than smack bang in the middle among her intestines. Apparently that is better because the gut recovers more quickly from the surgery as they don't have to disturb the intestines at all - they can just put the kidney in beside them.

The other thing we discussed was the timing of things on the day.

My surgery will start in the morning - probably around 9 ish. At that time Ashlea will already be at the hospital having blood work done and receiving her first dose of immune suppressant medication. Once my surgeon has seen my kidney and decided that it is definitely good to go they will take Ashlea down to surgery. Usually the children go in at around 12:30 ish. The first hour is taken up by the anaesthetist getting a central line in and doing whatever it is that anaesthetists do (go figure - I thought all they did was the crossword while you were asleep). The surgery then takes around 4 hours so Ashlea won't be in the PICU until early evening most likely. The surgeon warned us that she will be really puffy for the first few days as they pour heaps of fluid through the kids to keep the new kidney perfused. He said she'll also have a central line and a catheter in as well. Man is she going to be pissed when she wakes up. The surgeon suggested we speak to the anaesthetist about keeping her well sedated so she doesn't pull any tubes out. Knowing her I think that is a good idea!

As the transplant is getting closer it is becoming all I can think about. There has been a real shift in my thinking even just over the last week. Now that the school situation is sorted out my mind has really just switched into kidney mode. I am starting to prepare myself mentally for what is to come. I don't necessarily know how to do that in a healthy way, but I can feel myself distancing myself from the outside world and starting to become very inward focussed. I'm getting my defences up and starting to steel myself for what is to come. The last thing I want to do is talk about how I feel about the situation. I can't go there right now. Right now I just have to focus on getting through it.

I am still shocked from time to time that this is actually happening to us - that our family are about to live through this.

The good news though is that we are off to Bear Cottage on Saturday for some much needed respite. I have been very selfishly praying for good weather and good health for us for next week as we really need to have a break and be looked after for awhile before the big day in November.

And yes I will post an update from Bear Cottage - you know I won't be able to help myself!

A pony ride and a near heart attack...

2011-09-20T08:23:00.000+10:00

On Sunday after church we went to the local community fair.

Once again the power of a cute child in a wheelchair won out and Ashlea got offered a free pony ride. So cute - it was her first time on a pony and she loved it. She mostly held onto the handle thingy (sorry - I'm not a horsey person) and only spent about half the time trying to ride the pony while covering her ears with her hands.

Just before her ride I came close to having a heart attack. While Emma and Audrey were hopping on the ponies for their turn I put Ashlea's brakes on her wheelchair and stepped away from it to help Murray.

We were on a hill.

I have now discovered that Ashlea knows how to release the brakes herself.

Luckily I saw her out of the corner of my eye as she started to accelerate down the hill - and was able to jump in front of the chair and stop her. I don't usually move fast, but I tell you I moved fast that day. Every time I think about it I have palpitations and feel sick all over again. The outcome could have been devastating.

Lesson learnt - never trust the small cute child in the wheelchair!!!

2 Months To Go

2011-09-17T09:23:00.000+10:00

Tick, tick, tick.

The transplant clock is ticking down quickly now. Today marks 2 months until the big surgery.

I'm getting nervous. I'm starting to have that on edge feeling all the time as I anticipate what is to come. It doesn't help that Ashlea's nephrologist keeps using the word rollercoaster to describe the first year post-transplant. I don't want to get on the rollercoaster!!! I've been on the Ashlea-coaster before and it was not fun. Now that we have had time off the rollercoaster I really don't want to go back to living with my heart in my mouth all the time.

Ashlea had a kidney appointment during the week. Her kidney function is roughly the same as it was last month:

Creatinine: 410
Urea: 15.1
Haemoglobin: 113
Potassium: 4.3
Sodium: 139

I think that gives Ashlea a GFR of around 8 or 9 (mine is 111 to give you an idea of how low her kidney function is getting). Less than 15 is considered end stage kidney disease, so we're definitely there.

At each appointment the specialist drip feeds me a little more information about the risks associated with having a kidney transplant. We've already had the discussion about the risks in terms of the actual surgery - this time we had to have the discussion about the risks to the survival of Ashlea's new kidney. That was far more scary - those risks are much more real. The risk of dying in surgery is around 1 in 10000. The risk of kidney rejection is 15% - far too high for my liking.

In case you're wondering the risks are:

- blood clots
- acute rejection
- viruses

There is a risk of a blood clot forming in the kidney when they take a large adult kidney that is used to a large adult blood supply and put it into a smaller child's body with a smaller blood supply. In the last two years the doctor said she could think of 3 children who had developed blood clots - two of them were able to go back to surgery and the kidney was saved, the other child lost their kidney. Their brand new kidney transplanted from a family member. What a horrifying thought.

The second risk is rejection. In the first few weeks some people start to reject their new kidney straight away. Hopefully this won't happen with Ashlea as she and I are a good tissue match and Ashlea doesn't have lots of antibodies in her system yet.

The third and possibly scariest risk to the kidney comes from viruses. There are lots of viruses that are fairly harmless to healthy people but can cause serious problems for transplant recipients. The issue with viruses is that your body never fully clears them, so they can be passed from donor to recipient through the kidney. The serious viruses are CMV - which Ashlea and I are both negative for - although Ashlea is still at risk of being exposed to in the community; glandular fever (EBV) and BK virus. They don't test for BK virus until after transplant as I think it is pretty obscure but I know I am positive for EBV (glandular fever). This virus can be quite bad in that if a child gets glandular fever for the first time while on immune suppressants their body can do some weird thing where it gets itself into a pre-lymphoma state (that's cancer for those of you that are unsure). If that happens they have to reduce the child's immune suppression so they can fight off the disease as they don't want them to develop lymphoma. BUT the cost is that when you lift immune suppression you start to get kidney rejection and potential loss of kidney function.

Apparently these are all real risks that the doctos have all seen - rather than a 1 in 10000 risk that a doctor may have heard about but never seen. All the nephrologists have dealt with these complications. They are not all common but at the same time they are not unexpected - although very much unwanted.

So you can see why my stress levels are starting to rise. I'm starting to brace myself for what is coming - and am hoping and praying for none of these complications to occur and for the rollercoaster to turn out to be one of those little baby sized rollercoasters - rather than the Big Dipper.

It's Official!!

2011-09-14T19:08:00.000+10:00

Ashlea has been offered a place in the support class at our local public school.

YEEEHAAAAAAAA.

One less thing to worry about. She's in. She'll be going to school with her sisters but will have the support she needs. We are very happy.

I don't think the school or Ashlea have any idea of what they'll be in for next year, but I'm looking forward to my children all being at school together.

Imagine that - only one drop off in the morning! Only one pickup! And best of all Ashlea will have all her therapies at school - so no more running to and from appointments on my days off work! Just think - I might actually have some time to catch up with friends. Or watch TV. Or sleep. I know in reality it will probably mean grocery shopping and reading groups at school but don't burst my bubble - I like to imagine myself having some free time next year.

So, who's free for a coffee? I'll be available Thursdays and Fridays from Term 1 next year.

Thanks Julia!

2011-09-10T21:52:00.000+10:00

Our prime minister may have the lowest approval rating known to mankind at the moment, but in our house she is pretty popular. Ashlea has just received her approval for the Better Start Funding that was promised before the last election - and we have used some of the equipment money to buy an ipad.

Ashlea is a big fan. It's only been in the house 2 days and she is already saying:

Where's my ipad? I need to play it.

She loves playing the apps that don't require much control - such as the xylophone, drumkit and any musical instrument ones (especially the burp and fart piano). She is quite quickly grasping the concept of how to control the ipad but struggles with the fine motor skills to be able to do it well. I want her to start being more purposeful with her movements and to start isolating her pointer finger to touch the screen - so I would love to hear what apps have worked well for your kids.

The ipad has already come in handy as a sanity saver too. Tonight we had dinner at a (new church) friend's house - and the people have stairs in their house. Ashlea has a stair obsession and had a 30 minute tantrum about wanting to climb the stairs (which were steep and slippery and definitely not safe for her). Cue the trusty ipad and the squalling child was distracted from her tantrum. Although she did later work out that if you stop screaming about wanting to go up the stairs your parents will eventually get distracted and you can sneak through the barrier they had constructed and climb up anyway. Four times.

So, what are you app recommendations? At the moment our goal is specifically about improving fine motor control - but I would love to hear what all your favourites are.

Big School - Decision Day

2011-09-07T14:20:00.003+10:00

Today (probably right at this very minute in fact) is the day that the panel meets to discuss all the special school and support unit placements for 2012.

We have already decided where we want Ashlea to go - hopefully the panel will agree with our decision! Here's Ashlea trying on one of Emma's hats ready for next year.

How many minutes/hours/days do you think I should wait before I start phoning to see what the decision was??

Edited to add the link for Special Exposure Wednesday.

The Best Father's Day Present

2011-09-04T21:49:00.000+10:00

For Father's Day this year I promised Murray that I WON'T post the video footage that I managed to scrounge up of him singing Twinkle Twinkle Little Star at the preschool service last week. Instead I am going to post this video of Ashlea. She made Murray a card and some chocolate fudge at preschool, but this is her real Father's Day present (filmed last week during physio):

Emma's response when she saw it was to exclaim: "She's going to walk one day!"

In my head I know that children with Ashlea's level of cerebral palsy don't usually walk independently, but I still can't help but wonder....maybe? Could it be possible?

Even if she doesn't it's still amazing to see how far she has come!!

The Big Questions

2011-09-02T22:27:00.000+10:00

Will Ashlea die?

Will I die?

Most of you know that those are the big questions on my mind regarding the transplant. Unfortunately I'm not the only one with those questions on my mind.

During the week we found out that one of the children in the support unit at our school passed away. How utterly devestating. That is my worst nightmare as a parent and it pressed all my worry buttons.

What if that is us one day???

It didn't just press my buttons though. Since then we have had a number of discussions with Emma about how she is sad that the girl died (Emma knew her but not well), and we've also had the big questions.

Will Ashlea die during the operation?

Will Mummy die?

It breaks my heart that we have to have these discussions with our children. They're too young to have to worry about these kinds of things. I guess though that this is our life - and so we need to have these discussions. Other people can reassure themselves when they hear stories like this by thinking "well, that child was very sick, she had been sick a long time, she had a lot of things wrong with her" so even though she died, it is unlikely my child will die. We don't have that luxury. We can't distance ourselves as easily from this family's tragedy, because we are at risk of becoming that family. I know Ashlea is unlikely to die soon - but the reality is that she does have a serious medical condition and is therefore more at risk of dying than a 'typical' child. That is our reality.

I just wish I could shield my other children from it for a bit longer.

Hello Ducky

2011-08-31T14:07:00.001+10:00

Ashlea currently has an obsession with ducks. This obsession has been going on awhile actually - she has a variety of toy ducks that she plays with, and has even taken to calling me Ducky.

Hello Mama Duck she says to me.

Hello Daddy Duck.

Hello Aunty Carolin Duck - you get the picture.

It is VERY cute.

We had the chance to meet a duck last week. The kindifarm people weren't planning on getting the duck out to play so I made a special request for Ashlea to see it. Don't you love how requests that would normally get turned down get agreed to when a cute child in a wheelchair is the one asking???

So, here is Ashlea talking to her friend the Duck. I'm not sure what she's saying to him but he looks thrilled don't you think???

Edited to add the link to Special Exposure Wednesday.

What went wrong?

2011-08-26T21:09:00.003+10:00

The last few weeks have been incredibly hard for me - not because of anything going on with the transplant - but because at the ripe old age of 40 my best friend and I have had a major falling out.

How can this happen? We're too old for this shit!!!

I am absolutely devestated and have no idea what to do to repair the friendship. I feel like I need to talk to her about it, but for the first time ever in our friendship she doesn't want to speak to me. I do understand that its hard to talk to someone when you're hurting, but I guess I am frustrated because I am really hurt too - and am trying to reassure her (and me) that our frendship will survive this, but I haven't gotten any response.

(For those wondering about the wisdom of blogging about this - no she doesn't usually read the blog and besides she has gone overseas for 6 weeks so by the time she gets back this post will have sunk into oblivion. On the off chance she does read the post I can assure her and all of you that this is in no way meant to be hurtful - I just can't not talk about this because it is such a big thing for me. If any of you think that this post could be damaging then I will edit it or remove it).

What I do know is that I'm completely devestated and don't know what to do next. I have not been this upset about something for a very long time. I still don't know quite how things went so wrong? Usually I am a 'hold it all together' kind of person, but I can not stop crying about this. I don't know if it is becuase this actual situation warrants this many tears, or if it is because ALL of the grief and worry and stress of 2011 is coming out my eyeballs right now - and this is just the trigger.

The whole thing has made me realise how alone I feel. I don't have a lot of friends - at the new church everyone is new, at the old church most people are 'Sunday friends' - meaning we really only see each other at church but don't hang out together. All the school mum friends I have are new friends too - and I haven't really had the time to put into cultivating those friendships because life is just so busy. I am really hoping to make some good friends at the new church and at school - people who we see on Sunday but who we can also hang out with at other times - and have a real sense of community with.

Special Exposure Wednesday: Games

2011-08-24T13:52:00.000+10:00

Do any of your kids with special needs enjoy playing games?

Ashlea is just starting to discover game playing. Her favourite - and pretty much the only game she 'gets' - is hide and seek, although this photo is of her 'playing' snakes and ladders. As you can imagine the other kids get frustrated when she lies on the board holding the pieces. Hide and seek however is a winner with everyone and even though she struggles to play independently, she understands and enjoys the idea behind it.

She often asks adults to play with her - but she usually 'asks' by saying 'She might play hide and seek with you' until the person gets the hint to play hide and seek.

The other day she crawled up to Audrey and asked to play hide and seek with her.

Audrey she said.

Audrey! (Audrey was watching TV).

By this time she is right in Audrey's face.

Audrey want play hide and seek with me.

I nearly melted. She asked her sister to play a game with her!

She asked Emma yesterday too. What a gorgeous moment.

Emma and Audrey both obliged by playing hide and seek with her. They are both very good at playing with her and make a big fuss of looking for her - even when her idea of 'hiding' is lying in the middle of the floor giggling. They then hide in places easy enough for Ashlea to find - or they give her clues (for some reason they like to make quacking noises as their clue) to help her find them. Obviously I have to help Ashlea play, but this beginning of independent play with her sisters is just beautiful.

I can't tell you how much I LOVE seeing them play together.

For more Special Exposure Wednesday click here.

The end of an era...

2011-08-21T21:06:00.001+10:00

Today was Audrey and Ashlea's preschool church service - their last one ever.

I think Ashlea actually coped better last year - in some ways her sensitivities to noise and new environments are stronger than ever. She lost the plot as soon as the children came into the church so I took her outside until it was time for them to get up on the stage. Unbeknownst to me while I was outside the people running the service asked the children to volunteer some of their parents to come up on stage and pretend to be at preschool. Typically when something like that happens Murray and I avoid all eye contact with the children so they can't volunteer us - but somehow this time Audrey managed to volunteer Murray to get up on stage - which surprisingly he did. Unfortunately being outside meant that I completely missed - and have no video or camera footage to offer you all as proof - that Murray was forced to sing Twinkle Twinkle Little Star up on stage in front of all the other parents. I realise he is probably happy that there is no permanent record of this but I can't believe I missed it! Anyone who knows Murray in real life will know that that is SO NOT HIM!!

After nearly being upstaged by their dad it was the children's turn to get up on stage.

Here they are in their final preschool service - standing on stage so sweetly:

Cute hey?

In reality it was more like this:

She managed to stay on stage though. There wasn't much singing although she did manage a couple of the actions and she didn't have a total meltdown. It's as much of a success as we could have hoped for!

I can't believe we are nearing the end of our time at preschool. Sob. All three of my girls have loved preschool but for Ashlea in particular it has been a wonderful experience - and will most likely be her best ever experience of full inclusion in a classroom. I can't imagine not being at preschool and seeing our wonderful teachers next year - especially Mrs Cook - who has been amazing with Ashlea.

How did that time go so fast???

The 12 Days of Crazy

2011-08-19T13:06:00.003+10:00

To be sung to the tune of 'The 12 Days of Christmas'.
A summary of the last fortnight.

On the first day of crazy the universe sent to me...ONE COUGHING child.

On the 2nd day of crazy the universe sent to me....TWO hours waiting (at the children's hospital)

On the 3rd day of crazy the universe sent to me... THREE calls to Telstra (with no resolution to my problem)

On the 4th day of crazy the universe sent to me...A horror school meeting

On the 5th day of crazy the universe sent to me...one lesbian blindside

On the 6th day of crazy the universe sent to me...a husband with a backache

On the 7th day of crazy the universe sent to me...a children's fairy party

On the 8th day of crazy the universe sent to me...an unnecessary trip to the hospital to pee in a cup

On the 9th day of crazy the universe sent to me...bad news about Ashlea's hips

On the 10th day of crazy the universe sent to me....ANOTHER coughing child

On the 11th day of crazy the universe sent to me...an overheating car

On the 12th day of crazy the universe sent to me... a party at an indoor play centre.

Chorus - sing along with me...

One playcentre party,
one overheating car,
one coughing child,
bad news about her hips
an unnecessary trip to the hospital,
one lesbian blindside,
one horror school meeting
3 calls to telstra
2 hours waiting
and 1 child who still can't stop coughing.

Anyone got one to add?

Special Exposure Wednesday: Kraft!

2011-08-17T14:00:00.000+10:00

Here is Ashlea doing some craft.

Or should I say Kraft?

Can anyone tell what she is using to draw on the concrete with???

PS...Today is 3 months until transplant...the countdown is on.

For more Special Exposure Wednesday click here.

Party Progress

2011-08-14T21:23:00.001+10:00

Ashlea and Audrey had a birthday party to attend today. I am amazed at how much Ashlea's party tolerance has improved. She tolerated the party entertainer (a fairy) - she didn't want to sit on the mat with the other children but was happy to sit close by in her wheelchair - and she then orchestrated all the other kids on the trampoline with her command of "I want to bounce", which meant they all had to bounce the trampoline for her. She even coped with happy birthday - she knew it was coming so put her hands over her ears and started humming from well in advance until well after it was over.

There was one other big success. Can anyone tell what it was???

Going into battle

2011-08-11T16:24:00.001+10:00

Today I had a meeting with the Principal of the school I want Ashlea to attend next year.

Talk about frustrating.

I thought I was going there to sign off on Ashlea's application forms. The application wasn't ready for me to sign, rather the school used the opportunity to encourage me to apply to other schools. They kept stressing that they can't guarantee Ashlea a place at the school - which I understand - I know it isn't the school's decision, it's the all powerful panel's decision. That would be the panel that has never met or even laid eyes of any of the children it is placing...but I digress.

As you know I am applying for Ashlea to be in the physical support unit at our local school. If a place can't be found in the unit for her, she will attend the school in mainstream kindergarten. The principal today strongly encouraged me to put some special schools down as an option on the application form, all the while telling me how difficult it would be for everyone if Ashlea were to be in mainstream kindy.

Um, excuse me, I don't care if it is difficult for you to accommodate my child at school. It is her right to get an education at her local public school.

Of course I didn't say that to them. I sat there quietly fuming but biting my tongue because I know I still have another 7 years of dealing with the school - I can't burn any bridges yet. Also I was so frustrated that I knew I would probably end up crying in front of them - and like I said - I have 7 years of negotiations ahead of me - I'm not going to be pigeon-holed as the hysterical parent, because generally I am not the hysterical parent. It's just that sometimes it seems like the whole disability system is designed to wear us parents down so that we don't have any fight left in us - and then when we give up in despair the system can continue on as it always has done.

They told me to consider going to visit some special schools in the next week and put them on my application. I don't think they thought my answer of "I don't have the time" was good enough. But seriously - I work and we are in the middle of preparing for a kidney transplant - I don't have time! Come to think of it I don't think they liked my blanket "She's not attending special school" statement either.

Sorry for the mega whinge - but I am mega frustrated - so I am going to continue for a little while longer...

I don't want to list any special schools on the application form because I am concerned that it would then be too easy for 'the panel' to place Ashlea in a special school. A special school is not my first choice for her as I feel that language and socialisation are Ashlea's strong points. My concern with a special school is that there would be a lot more non-verbal children there and Ashlea wouldn't be as stimulated in that area. Also, I want all my children to attend the same school - is that too much to ask??? My concern however is that if Ashlea doesn't get a place in the unit, then mainstreaming her at a school that looks at all the difficulties associated with mainstreaming, rather than the benefits means that I will likely have to battle with them on every front - which I seriously don't have the energy for right now.

I couldn't even get a direct answer from them when I asked if they thought Ashlea wasn't suitable for the school. I think she is suitable for the school, but if they don't think she is then that gives me a good insight into where they are coming from and what we may be up against.

Now I understand why all my friends with kids who started school this year were tearing their hair out this time last year! What an unnecessarily difficult process this is.

Kidney Update

2011-08-09T21:14:00.001+10:00

This afternoon Ashlea had an appointment with her kidney specialist. We haven't had a check up for two months so my heart was in my mouth as we waited for Ashlea's blood results. After all our mental preparation for a November transplant I was half expecting a huge change in creatinine and therefore a change to the transplant date.

Here are the results:
Creatinine 395 (up from 349)
Urea 14.7 (better than expected)
Potassium 4
Sodium 137
Haemoglobin 112

We are still on track for a November transplant, but much to my horror they have changed the date anyway! Apparently there was a clash with a liver transplant and who knew, but livers trump kidneys. Our new date is 17-11-11. It just doesn't have the same ring to it I'm afraid, but what can you do?

I really struggled at the hospital today. I just did not want to be there. I know no one ever wants to go to hospital appointments, but usually I just try and accept that it is part of our lives. Today it didn't work. It really got under my skin that this is our life, and that other people don't have to deal with all this crap. Ashlea was a trooper though. She cried during her blood test - but no more than any other child - which is a huge improvement on her screaming, thrashing ways of the past. She also lay still-ish for a hip x-ray, co-operated without even a whimper for her blood pressure, and barely a whimper for the weighing and measuring. She did keep up her refrain of "Is is time to say bye-bye yet?" but I think that's fair enough.

So - reality check - this is definitely happening. In November. Can someone remind me how we got here?

So, here's how it went...

2011-08-06T20:45:00.000+10:00

We survived the appointment on Wednesday.

Not being a fan of group therapy, I mainly used the time to raise some issues that I don't think the medical team have thought of yet. Things like:

what sort of hospital bed will they provide for Ashlea's safety,
is there an outreach nurse who can come to our house for the daily blood tests following the surgery,
can Ashlea have a central line rather than being traumatised every day for 2 months with blood tests, and
don't forget she can't swallow - anything - so make sure all medications are in liquid form

The psychologists promised to follow up on those things and unless we feel we need to see them again they won't see us until the transplant has taken place.

They did ask the children a few questions to see how much they understood.

Ashlea's response?

Is it time to say good-bye yet?

Amen to that.

Emma was quite cagey with her responses which I think shows she is quite anxious about the whole thing. She is prone to anxiety so it will be hard on her - and Audrey too.

At the end of the session the psychologist turned to me and asked me if I had any concerns about the transplant.

Um, I don't know - maybe that Ashlea or I could die.

Is she serious? She's already seen that my kids are anxious about the situation - does she really expect me to answer that in front of them?

(Disclaimer - I know it is very unlikely either of us will die - but it is major surgery and I am a natural born worrier. If it's only a little worry I don't bother with it anymore - but I do go to town on the big ones).

Needless to say she got a very guarded answer.

Do we have to?

2011-08-02T19:57:00.000+10:00

Tomorrow we have a hospital appointment.

The whole family.

All five of us.

To see the hospital psychologist to talk about the transplant.

Really?

Do we have to?

Can't they just take my kidney out and be done with it? Do I have to talk about it too???

Someone wish the psychologist luck. It's her job to try and talk to this little chook about how she feels about the transplant. I'll let you know how that goes shall I???

The Church Dilemma - update...

2011-07-31T22:25:00.001+10:00

We've been to the 'new' church 3 times now. They have been so friendly and welcoming - there just seems to be so many good reasons to go there. It's close to home. The children like it. The people are friendly. The clincher though is the way they have welcomed Ashlea. I often judge people - rightly or wrongly - by the way they treat her. The first time we took her to Sunday School the teachers just asked straight up if she would be joining in (she lasted less than 5 minutes but it was worth a shot). It was just assumed that Ashlea would join in - which of course is exactly how it should be. A lot of people have also made the effort to speak to Ashlea when they have been speaking to me - which might sound like a little thing but it is not something a lot of people do. It probably helped that Ashlea was being particularly charming today and was asking for cuddles - from complete strangers - and being incredibly cute and snuggly with people, charming them into falling in love with her (I like to think they loved carrying a heavy 5 year old around anyway).

We have already had people offer to make us meals during the transplant and the minister said to us today that despite the fact they haven't before had anyone in a situation like ours, that they want to support us in whatever way they can.

So....we are seriously thinking about making the change. There are a lot of great, practical reasons to go to a church close to home - and this church seems like it could be a good fit for us. The only thing that is really keeping us at Gladesville is the history we have there - and what a history it is.

If we are going to make the move permanent, we need to go back to Gladesville and say good-bye. Not because we will never see anyone again, or that we are so important that everyone needs to know what we are doing. I do think though that we need to publicly thank everyone for their support, generosity and love as they have walked this journey with us. They helped us through the most difficult time of our lives. We will be forever grateful for that.

But if we do that, it will be real. That would mean we are really leaving. And there is something about leaving that history that is a little heartbreaking.

Quick...

2011-07-29T22:05:00.003+10:00

Help!

Quick!

I just realised that I have posted Ashlea's mid-year updates (check your letter boxes everyone) to all our friends. I of course included the link to this blog in the update. I have given them to the minister AND the senior minister at church, the minister at the new church, friends, acquaintances, everyone.

I even gave one to the ex-deputy prime minister of the country - and his wife - who were speaking at a church event tonight.

And then I realised...that the most recent blog post was the one below, about my parenting (and other) fails. And two posts below that is a post about gastro that contains a photo of a toilet.

What was I thinking???

So....quick....HELP! I need an idea for a great blog topic. Something clever and witty and insightful, preferably without any fails.

I'm open to all suggestions!

Fail

2011-07-28T13:06:00.000+10:00

Parenting Fail:

If your smallest child - who also happens to have significant delays - exclaims Oh Shit when something doesn't go her way, you have probably committed a parenting fail somewhere along the way.

Speaking hypothetically of course.

Ahem.

If you and your other children hear the above exclamation and burst out laughing you have probably just compounded the fail.

Dentist Fail:

When discussing your broken tooth with your dentist, the expression "I cracked a root!?" is probably not the best one to use (in Australia anyway - that fail may not translate overseas).

Anyone else got a fail they'd like to share??

Christmas in July

2011-07-26T19:19:00.002+10:00

Contrary to my natural urge to leave things to the last minute, this year I am trying to get organised. Early.

I have started my Christmas shopping.

I don't usually shop during the July toy sales as I have a tendency to lay-by stuff and then forgot about it. I then lay-by more stuff and forget about that too. Then when I collect my lay-bys at Christmas the present pile for the children nearly reaches to the roof. Not that they've ever complained about that of course.

This year however I am lay-bying the children's Christmas presents now, so that in the event that I am not in any shape to battle the Christmas shopping crowds - having just had a kidney out and all - Santa can still come to our house! I plan to have my lay-bys paid off before the transplant so my sister can just go and pick them up for me close to Christmas if I'm not up to it.

So, the point of all that is that I need ideas for what to get Ashlea for Christmas. I have Emma and Audrey sorted - they are each getting an 8Gb ipod touch. I know - it's a bit extreme for a 5 and 7 year old but I am sick of them running down the battery on my phone whilst checking their zoos and playing Angry Birds. Don't even get me started on the fingerprints. They are also getting a go-cart type thing to pedal around in the backyard and a masterchef outfit each.

Sorted.

But what to get the little Miss???

She already has every single In the Night Garden toy known to mankind.

Any thoughts? All suggestions welcome!

In keeping with the spirit of Christmas I am also sending out a little note in the mail to everyone who would normally get our Christmas newsletter - just so that those who aren't 'internet people' don't get the shock of their lives to read that they missed the big event. Keep an eye on your mailboxes - I hope to get them out this week.

The Good, the Bad, and the Ugly...

2011-07-22T20:34:00.001+10:00

Let's start with The Good.

My working from home plans have come to fruition! I am now able to work at home for 2 of my 3 work days which definitely makes life easier. Just quietly I have further plans that involve working from home all 3 days but I am trying to go slowly, slowly and not piss anyone off while rolling out my plan.

Now for The Bad.

My mood. Oh man I am so IRRITABLE at the moment. Everything is getting under my skin and I am finding it so hard to be patient. Juggling work, appointments, application forms, school, preschool, money, cooking, washing - everything feels like it is getting on top of me at the moment. My brain is so scattered at the moment that when we went to swimming this afternoon I forgot to close the front door. Left it WIDE open - anyone could have come in and helped themselves!

How many weeks left of term???

And then there's the Ugly.

Someone taught Ashlea the chicken dance song. I reckon she sang it for 30 minutes straight tonight (what was I saying about needing patience???). At one point I told her I was going to have to put her to bed early because I couldn't stand it.

Her response?

NO! But I can't stop singing!!!

OK, that's not really very ugly is it? But I thought it was more savoury than telling you about my gastro experience earlier in the week. I could have done with this set up when I was trying to work from home on Tuesday.

Now what will be really ugly is if all the kids come down with it. All at once.

Wordless Wednesday

2011-07-20T09:32:00.000+10:00