Wednesday, February 29, 2012

Day 52 - P is also for...

P is for Protein-Free-Pee.

Murray's Pee passed the 24 hour test.  He is one step closer to giving Ashlea a kidney - which is very good news considering that today is the 29th of February which makes the transplant only 1 month away!

And before you all tell me how gross that picture is - it's APPLE JUICE.

Tuesday, February 28, 2012

Day 51 - True Confessions Tuesday

I like contacting the kid's school books.

There.  I've said it out loud.

I like it.

I find it very satisfying.

I'm actually quite good at it.

Some would even say I am a little bit obsessive about it.  None of my children's books ever go back to school with a single wrinkle on them.

Anyone share my secret passion?

Monday, February 27, 2012

Day 50 ... In Which Audrey discovers BOYS

Audrey has a boyfriend.

A boy in her class is quite besotted with her.  She told me he always pushes in so that he gets to stand beside her or walk with her.  He wants to come over to our house so they can play Super Mario (he will be Mario and Audrey will be Princess Peach).  I met his mother at school today and apparently he had told her about 'the most beautiful blond haired girl' he'd met at school.  'She's even more beautiful than you Mum' he said.

He thinks they should go on a date one day.

Audrey suggested they got to Macquarie Centre to have McDonalds and watch the ice skating.

Um is she about to turn 6 or 16???

Sunday, February 26, 2012

Day 49 - It's Hip to be...Wedged?

Not a very flattering photo today but I wanted to show you Ashlea's new torture device therapy aid.

Ashlea's last hip x-ray showed that her hips are starting to migrate out of their sockets (35 and 31 degrees for memory - can't remember which hip was which) so we are now the proud owners of this delightful foam wedge.  Seriously you would not believe what OT's can create out of foam and velcro - I have never had so much foam and velcro in my house since having Ashlea!

Surprisingly Baby Duck has been incredibly tolerant and worn it to bed the last two nights without complaining.  Hopefully it will do it's thing and keep her hips in a better position so we can avoid that (other) big nasty surgery for awhile longer.

Saturday, February 25, 2012

Day 48 - Happy Birthday Mum!

Meet my Mum.

She just turned 81.  Seeing as she is from the same side of the family as my Aunt and Grandfather that makes her still a spring chicken.

Our family - like most - can be a bit strange.

We're not close in the way some are close - we would never share our deepest feelings with each other (most of us would shudder at the thought of that), but we are close in that we can always depend on each other.  If I need something someone will be there to help out.  No fussing.  And no bitching.  Seriously - it is like an unwritten rule that it's not OK to bitch about other family members. That is something I really want to take with me into my family. I want my kids to know I can always be depended on if they need me, and I want them to know I have their back and won't bitch about them.

I'm always curious about how other families work. What are your family's quirks? I'd love to hear!

Friday, February 24, 2012

Day 47 - Kidney Appointment

Today's photo sums up how Ashlea and I feel as we walk out the doors of the kid's hospital. Actually by the time we get to leave we are usually too exhausted to muster up that much enthusiasm - but it's how we feel on the inside.

Today Ashlea saw her kidney specialist.  Her kidney function is similar to last month - her numbers are actually slightly improved (just don't tell the dietitian I have decreased Ashlea's calories as it drives her creatinine up).

Today her Creatinine was 484 and her Urea 16.7.

I'm glad things are holding steady.

We are still heading towards a March transplant.  Murray's got a big week ahead - he has to fill his Pee bottle on the weekend (thanks to our friend who offered to come and drink beer with him to support him in this endeavour but I think we'll stick to water).  He also has a blood test on Monday and then the psychology and surgical consults on Friday.  Hopefully the results of all these will give us an indication of whether the transplant will go ahead.

As usual the doctor and I have been making contingency plans in case Murray can't donate.

Plan A is still for Murray to donate.

If he can't donate Plan B is for me to have another cross-match and see if maybe I can donate. Both these plans involve the surgery going ahead on March 29th.

Plan C is for Ashlea to go on the public waiting list for a kidney from a deceased donor.

Plan C might be swapped for Plan D which would be the paired exchange program.  The problem with options C and D is that it would take awhile for Ashlea to get a kidney and would involve dialysis in the meantime, so we are still hoping and praying for Plans A or B.  Preferably Plan A.

Thursday, February 23, 2012

Day 46 - In Which Audrey Discovers the Canteen

Audrey has recently discovered the delight that is the school canteen.  My girls are allowed to go to the canteen once a week if they get themselves dressed for school and do their piano practise.

This photo doesn't quite capture how impressive the mess on her shirt was.

Anyone one to guess what she had?

Wednesday, February 22, 2012

Day 45 - Big P Little P What Begins with P?

This Pee Bottle that's what.

Today Murray saw the kidney specialist.  We had been hoping he would get the big tick of approval to give Ashlea a kidney.  Instead he got this Pee Bottle.

The doctor wouldn't give a definite answer and is making him do a 24 hour urine collection, another creatinine clearance (blood) test as well as have an appointment with a psychologist.  All before his next appointment on the 15th of March where he will hopefully give us the final word.

So it looks like we won't find out for sure if Murray can donate until 2 weeks before the surgery is scheduled.

To say I am Pee'd off is an understatement.

Tuesday, February 21, 2012

Day 44 - Please Pray

Please pray for a lovely friend's 16 year old (otherwise healthy) daughter who came home from school last week with a fever and since then has been in ICU with part of her skull removed to stop her brain swelling.   The doctors have no idea what has caused it.

As someone who has done the bedside vigil I know there is nothing more horrifying for a parent than to sit and watch and wait to see if your child is going to live.  It is pure torture.  

Monday, February 20, 2012

Day 43 - Donate Life

This week is Donate Life Awareness Week.

The aim of the week is to encourage all Australians to talk about organ and tissue donation and to discuss their donation decision with the people closest to them.

Did you know that one organ and tissue donor can save or enhance the lives of 10 or more people?

Please consider becoming an organ donor and making your wishes known to your family.  You could save someone's life - someone like my gorgeous Ashlea.

Saturday, February 18, 2012

Day 42 - Reflections

I have been reflecting on our first two weeks of Big School.

What a success.  All 3 of my girls are very happy in their classes.

Ashlea in particular has taken to school 'like a duck to water'.  She has truly amazed me.  She loves going to school and in particular she loves being in the classroom doing school work - she loves the stimulation.

It struck me the other day that the start to school has been very different to previous transitions we've gone through.  When Ashlea and Audrey started preschool the grief for 'what might have been' was very strong.  The sadness of what we had been through rose to the surface.  The grief over what we were yet to go through was present.  Also the feeling of being just so damn conspicuous drove me nuts - I felt like everyone knew who we were even though I didn't know anyone else - because we stood out with all our equipment.

This time it was completely different.  I didn't have any sense of sadness over what could have been - this time there was just delight and amazement with what is.

Delight in Ashlea's progress.

Joy, wonder and amazement at how far she has come.

And hope for the future.  For so long I worried that Ashlea wouldn't live long enough to go to school. Starting school somehow seemed to signify that Ashlea is indeed stronger than I think and has much to look forward to in her future.

This is the first big transition where the grief monster hasn't reared it's ugly head.

This time I was just able to savour the moment - and revel  in how far Ashlea has come.  It has been an amazing six years and God has been very good.

Starting school has gone so much better than I could have ever imagined and I have been able to put that big scary operation completely out of my mind.  Ashlea and Murray both have kidney appointments this week so I'm guessing cold hard reality is going to burst my bubble - but I'm enjoying it while it lasts.

Oh and yes the photo is relevant to today's ramblings.  Can you work out what it is?  Murray couldn't work it out - but I think I've given plenty of hints...

Friday, February 17, 2012

Day 41 - Audrey's Tooth

How can this baby be old enough to have lost her first tooth?

It started wobbling a week ago.  Audrey helped it wobble more and more but wouldn't let me finish off the job.

So I sent her to school yesterday with an apple for fruit break.

Mission accomplished - her first tooth has fallen out.

Isn't she too young for this???

Wednesday, February 15, 2012

Day 39 - School...The Bad

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???

Tuesday, February 14, 2012

Day 38 - School...The Good

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!

Sunday, February 12, 2012

Day 37 - A Special Visitor

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"

Friday, February 10, 2012

Day 36 - Thursdays with Kate

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.

Wednesday, February 8, 2012

Day 35 - Big Kidney News

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".


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.


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

The countdown is back on!

Tuesday, February 7, 2012

Photo A Day - Day 34

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!!

Monday, February 6, 2012

Big School!!!

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.

Sunday, February 5, 2012

Photo A Day - Day 33

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!!!

Saturday, February 4, 2012

Photo A Day - Day 32

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.

Friday, February 3, 2012

3 Sleeps...

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.


At the same school.


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!