Tuesday, July 31, 2012

July 31: ABC Duck





This is Ashlea's imaginitively named ABC Duck (he sings the ABC's in case you're wondering).  He goes everywhere with her as you can probably tell by the colour of him.  He has been to nearly every department of the hospital and could quite possibly now be considered a bio-hazard himself.

Today he came to clinic and had a blood test.  I love how patient our pathology collectors are that they did a blood test on ABC Duck.  He then had his chest listened to and his temperature taken - all while the nurse was trying to do those things to Ashlea.

My other girls have often played medical games (like extreme doctors) - it is lovely to see Ashlea be able to start to process her experiences through play too.

Maybe next time we go to clinic ABC Duck should visit the autoclave though???


Monday, July 30, 2012

July 30: The Trifecta


Ashlea is Star Student at school this month - pretty impressive since she has been away for most of the month - but that's beside the point!

We coached her over the weekend so she would be able to cope with going up the front of assembly to get her badge and she did really well.  You can see from the photo though that I don't quite know where to pin it - I have given in and bought some bandana bibs  (or chew-chews as she calls them).  Probably not safe to have something pinned to a chew-chew but it's pretty exciting to be Star Student and we need to show that badge off!  

All 3 of my girls have received Star Student badges this year - we're pretty happy about that!

Sunday, July 29, 2012

July 29: Superstar



Ashlea now has the pleasure of learning sight words like her sisters.  We were practising this evening and she kept being cheeky and crawling away from me while laughing hysterically.  I raised my voice a little and told her to 'Come back and do your sight words!'

So we tried again - and again she was cheeky - so much so that after being deliberately naughty she asked me 'Are you going to yell again?'

Eventually we got there - sorry the video is a bit wobbly - I was filming and passing sight words at the same time.

Saturday, July 28, 2012

July 28: DodoDay


Today is a DodoDay.  For those of you who are unaware of the significance of a DodoDay - it is any day where you get to stay home and play your favourite app (Talking Dodo) on your iPad.

All.day.long.

It's even better if you have two ipads or can steal one of your sisters ipods - then you can have two (or more) Dodos going at once.

And if your twin sister steals the ipad?

First you say:  "Audrey can Ashlea please have the ipad?"

When she doesn't respond you remind her by saying: "Audrey - she asked nicely - give it to her please!"

If all else fails you start making plans to get it back and say what you really think: "Something is going to happen to Audrey..."

Friday, July 27, 2012

July 27: Olympics!


Over the next few weeks Ashlea's class is holding a mini Olympics and Paralympics on Friday mornings to coincide with that big sporting thing going on overseas.  They began today with a torch relay and opening ceremony and Ashlea won a bronze medal - although I'm not quite sure what event that was for!

Her teachers said she was able to overcome her apprehension and enjoy it - although apparently she was overcome by the time it got to the medal ceremony.  

Talk about cute!

Thursday, July 26, 2012

July 26: 4 Months On


Today is Ashlea's 4 month kidney-versary.

She has healed so well and is back at school full time - almost as if nothing happened.  It seems weird to think she had such a big surgery just a few months ago!

In honour of her kidney-versary I thought I'd tell you all that her new kidney is still functioning beautifully - her creatinine this week is a lovely 39 and all her other numbers are wonderfully normal.  

Remember when her scar looked like this?

Wednesday, July 25, 2012

July 25: Homework


I had forgotten what it's like to do homework with all 3 of my kids at once.

I need help!  How do you get all your kids to do their homework AND stay calm.  How do you even get them to stay at the table without jumping around??

I have a new found respect for my teacher friends - how on earth do they get a whole class of kids to do their work?  I can't even manage just three!

Tuesday, July 24, 2012

July 24: Karate


Somehow today I got talked into letting the girls try karate lessons.

Unfortunately they enjoyed it (after school activities tend to make me a bit shouty) but it is good exercise so I will try and encourage them to keep at it.

I don't know how parents have the energy to take their kids to multiple after school activities each week.  How do you all do it???

Monday, July 23, 2012

July 23: Bribery & Corruption


Last term we completely dropped the ball on school work, but this term I want to try and get back into it.  Of course the kids aren't keen for this so I've had to resort to bribery.  Emma has to read a chapter from a 'chapter book' and Audrey has to do her sight words every day in order to get their prizes.  

Wish us luck, so far we have successfully done it for..... one whole day.

Sunday, July 22, 2012

July 22: Penguin Obsession


My girls got to meet some of their favourite characters today - Mumble and Gloria.

We nearly didn't get there as Emma was feeling really anxious (and yes I do have an appointment for her to see someone).  Is it possible for an 8 year old to have a nervous breakdown?  She is totally unravelling at the moment having multiple panic attacks a day.  I am at a loss as to how to help her.

I feel so sad seeing my once vibrant, fun loving child being gripped by this anxiety.  I'm also bloody angry.  Haven't we already got enough to deal with?  This anxiety is taking over our lives and I am really, REALLY pissed off.   I do not want to have to deal with it as well as everything else!

Saturday, July 21, 2012

July 21: Wish Dilemma


Today someone from the Starlight Foundation came over to discuss Ashlea's Starlight Wish.

We still can't decide what to do!  As much as Emma and Audrey would like a holiday the wish is meant to benefit Ashlea - and it is pretty safe to say a holiday to an amusement park is not going to be her favourite thing.

One thing the lady suggested that we hadn't thought of was a hydrotherapy spa.  Yes, yes I know we have an indoor spa but it is too small for us all to get in!  Besides we will have to remove it if we ever hope to have an accessible bathroom.

Ashlea LOVES being in the water and we haven't been able to take her back to swimming since the transplant as we have been too worried about infections.  There is obviously a price limit for wishes so it would either be a hydrotherapy spa (not a huge spa pool) or if we wanted something bigger (but colder) possibly an above ground pool.

Any thoughts?  What would your kids prefer - the space of an above ground pool?  Or the warm water of a spa??

Or should we just go with the swing set - at least that wouldn't require maintenance!!!

Friday, July 20, 2012

July 20: Old


Who do you think these gnarly old arthritic looking fingers belong to?

Sadly they are mine.  And sadly it has been confirmed that I do indeed have the family curse of osteoarthritis in them.  Along with the fact that I now can't read a thing without my glasses I am feeling a little old and decrepit!

* Photo by Emma





Thursday, July 19, 2012

July 19: Gross


This delightful object is Ashlea's chew toy.  You can see by the lack of teeth marks on it that she is completely disinterested in it.  What she is interested in is chewing her clothes - particularly the top of her shirt and her sleeves.

It completely grosses me out (along with the hand licking - which is what I bought the chew toy for in the first place).  She shows no sign of letting up this habit and her speech therapist thinks it is the normal 'mouthing' stage that all children go through - she is just going through it much later than everyone else.

If anyone has any suggestions for dealing with this delightful habit please help me out!  I think I am at the point of letting her wear wrist bands and bandana bibs to chew on.  And on that note - who was it that made us some bandana bibs awhile ago?  Was it you Emily's Mum???  Can you send me the instructions so I can make some?  Or better still anyone know where I can buy them already made - we all know the chances of me actually making some are pretty close to zero :)

Wednesday, July 18, 2012

July 18: My Spot!



There is a sunny little spot in our toy room where I like to sit in winter.  I am very hopeful that now that the girls are back at school I will get to sit there and do a little reading.  So far this crisis I have read Out of the Storm (a short commentary on Job), How Long O Lord (a very meaty book on suffering) and Suffering Well (a lighter read but still on suffering).  Anyone detect a bit of a theme?  Next on my list is When God Weeps by Joni Ereckson Tada - I am looking forward to reading it because if anyone knows about suffering it is her!

Clearly you can see from this picture that we live in a glamorous house that could easily feature in one of those Home magazines...  

Can you see the finger prints on the windows???  During the holidays we went to Audrey's boyfriend's house - Audrey was clearly thrown by the state of their pristine house and banged her head as she tried to walk through a glass door (she thought it was open the poor pet - she's never seen glass so clean).

So you see - they're not really dirty finger prints - they are safety markers - on my windows.

Tuesday, July 17, 2012

July 17: They know too much


I snapped this shot of my girls playing doctors.  I think they know too much - their conversation went as follows:

Emma: I'm going to doctor you Ashlea 
Ashlea:  I need a blood test! 
And a telescope for my chest (for some reason she always calls the stethoscope that). 
Audrey:  What else shall we do? 
Ashlea:  I need a blood pressure! 
And a ultrasound.  And the jelly (for the ultrasound). 
Emma:  What's an ultrasound???

Clearly Ashlea has far too much experience of hospitals.  The girls then proceeded to play 'kidney transplants' and pretended to remove Murray's kidney and put it into Ashlea - I think Audrey is putting the kidney into Ashlea in the photo.

Does anyone else have kids who play 'extreme doctors'??

Monday, July 16, 2012

July 16: Surprise WIN


Today we went to Disney On Ice courtesy of the Starlight Foundation.

We decided to be brave and ALL go - it seemed a bit mean to get free tickets because Ashlea is a Starlight Kid and then not take her.  So off we went - well prepared with 3 helpers, an industrial strength set of headphones and the ipad.  

We took bets before the show on how long we thought Ashlea would cope for.  I was closest with my bet of 20 seconds (a few seconds to realise what was happening, a few more seconds to take in a huge breath of air....and then the yell...).  So after 20 seconds Carolin took her outside to the cry room (note for the future - Allphones Arena has a cry room!).

For the second half though we tried her back in the auditorium.  She sat on my knee.  Sure enough after 20 seconds she was yelling and arching and writhing around.  But I managed to keep her in a position where I could squeeze her tightly.  

And she calmed down.

AND STAYED IN THE AUDITORIUM FOR THE ENTIRE SECOND HALF!!!

It is hard for people who don't have a child with special needs to realise just what an achievement this was for her!  I don't think she loved the experience - but she tolerated it - and it is the first time in a long time (possibly ever) we have ALL been able to do something like that as a family.

I'm calling it a WIN!

Sunday, July 15, 2012

July 15: Blessing or Curse?




At church at the moment we are doing a 3 week series on the topic of suffering.  I LOVE listening to sermons on suffering (having listened to something like 17 sermons on Job* over the last few months).  I am always curious to know what other people think about suffering and particularly what other Christians have to say on the topic.

It feels a bit conspicuous to be at church listening to these sermons when everybody there knows what we've been through!  One of the (obvious) areas covered in today's sermon was that suffering is not necessarily a direct consequence of sin.  It got me thinking though about why we all think suffering is so bad.  Why do we automatically wonder if we are receiving punishment or a curse from God when things go wrong?

What if suffering isn't a curse?

What if it is a blessing???

I would never want anyone to think of Ashlea as a curse or a burden.  She is undoubtedly a blessing from God.  We never think of her as a burden or a curse and I would be horrified if other people thought of her that way.  I would go so far as to say that everything that we have had to deal with through having Ashlea in our lives still falls on the blessing side rather than the curse side.  Although maybe check with me again about that when I am stuck in eye clinic with her on Tuesday.  But generally speaking I do not view any part of having Ashlea - even the difficult parts - as a curse.  Although maybe its easy for me to say that.  I'm not the one who has to live with cerebral palsy and kidney failure.  Maybe Ashlea wouldn't say that for herself?

For us having her in our lives has profoundly changed the way we view everything.  She helps clarify what is important in life - not material possessions or academic success.  Not money.  Not even living independently.  What is important is knowing God.  It doesn't matter that Ashea won't ever be successful in the world's eyes - one day she will be in heaven with God!  That is what matters the most!  Not just for Ashlea either - but for all of us.

It's weird though, because even though I would say that our Ashlea 'suffering' has really been a blessing, I don't know if I would say the same for Murray's brain injury.  It certainly doesn't feel like a blessing at the moment.  Hopefully one day (soon?) I will be able to look back and see how God has used it for His good purposes in our lives.  I'm sure from the vantage point of heaven we - everyone - will be able to see God's greatness in all of this.  It would just be nice to have a little glimpse of that now!



* For anyone else with a love of Job the best sermons I've listened to have been:
 - these 2 by Rob Smith (free)
 - these 6 by Tim Keller
 - these 5 by John Piper (free)

Saturday, July 14, 2012

July 14: For the birds...


How much Angry Birds is too much?

My girls are obsessed - I hope the app developers are enjoying their bags of money!!

Friday, July 13, 2012

July 13: A Sign of Progress


Murray has slowly been getting back into playing squash since the kidney donation / brain injury.

Today he finally beat his squash partner for the first time since the injury - definitely a good sign of progress!

No progress though on his willingness to have his photo taken.  Can you tell?

Thursday, July 12, 2012

July 12: Too cute!


How cute is this little bubba??

You may remember back in January that my friend Kim was put on bed rest at 19 weeks.  She managed to hold this cute little package in until 37 weeks!  We also somehow managed between the two of us to get our big kids to and from school despite her being on bed rest for all of term 1 and despite Ashlea and Murray's hospitalisations in term 2.

We are both hoping for a quieter time in term 3 - I think we've earned it!

And as cute as this baby girl is  I can safely say she does NOT make me clucky in the slightest!

Wednesday, July 11, 2012

July 11: Should I Convert??


I'm a tea drinker.

Every so often though I think I should at least try to like coffee - it seems such a waste to pay for water and a tea bag when I go out.  

I tried one of these coffees at Kate's the other day (I found a chink in her perfection - as a coffee drinker she makes a terrible cup of tea*) - it tasted pretty good. 

As a potential convert what would you recommend?  I'm guessing a short black is probably not the best place to start???


* Don't worry I checked with Kate before posting this - and in her defence she was trying to be healthy and use Splenda instead of sugar in the tea - but because she doesn't have sugar in hers she didn't realise how it tasted.  Until she had served it to many, many guests.  For more than a year.

Tuesday, July 10, 2012

July 10: Emma


Emma wanted to have a turn being the photo of the day - so here she is making cake pops.

Yes - I  did cooking with my children!  That is twice this year - which means surely I don't have to do it again for another 6 months?

Emma is still doing her feeling sick and panicky thing most nights of the week - it has been a month now.  Even though I think I probably do need to take her to see someone I am still worried that it will make things worse if I do. 

Just quietly her anxiety is setting mine off too.  Seeing her so anxious makes me feel anxious - which is very frustrating as I thought my anxiety had been much better lately.  It is kind of discouraging to think that even though I am now in my 40's I am still at the mercy of this anxiety when it attacks.

Some days I really can't wait for heaven!

Monday, July 9, 2012

July 9: Finally!


Yesterday we finally discovered a use for the over-sized apricot-coloured plastic spa bath that the previous owners squeezed into the teeny bathroom of this house.

Spa jets + bubble mix = a room full of bubbles.

Why didn't we think of this sooner?

Unfortunately one small person enjoyed it a little too much.  Ashlea woke me up screaming at 2:30 this morning to tell me she needed to have a bubble bath.


Let's just say her late night wish did not get fulfilled.


Sunday, July 8, 2012

July 8: One year on


This time one year ago was the first time we went to our new church at Norwest.  At the time it was such a hard decision to change churches as we knew Ashlea's transplant was coming up - luckily we didn't know what else we were in for. What we couldn't foresee was how we would be so wonderfully taken care of!

You might be wondering why a picture of the inside of my fridge?

Because it is pretty much fully stocked thanks to people from Norwest.  We have had fresh fruit and veg delivered every week since just before the transplant.  Countless people have made meals - people who until recently were complete strangers to us - who have even embraced salt free cooking to accommodate my Meniere's!  

Plus there has been lawn-mowing, hedge trimming, washing folding, cleaning, child minding, gift cards in our letter box, hospital visitors and many, many prayers!

We have been blown away by the big hearts of the people at Norwest - who didn't know us from a bar of soap this time last year - yet have taken such good care of us over the last few months.

Please excuse the dirty fridge shelves - there was no way I was cleaning just to take a quick snap.  Also please ignore that the 'meat keeper' is jammed full of chocolate - I have a new weakness thanks to another person at Norwest - Cadbury Rocky Road.  Yum.  You know who you are :)


Saturday, July 7, 2012

July 7: Budgie-Vision


Budgie-Vision - so much better than television!

Ashlea could happily sit here all day.  Do you think the pet shop owners would mind if I just dropped her off for a few hours??





Friday, July 6, 2012

July 6: How to torture your child?


Practise sight words in the holidays.

Audrey is behind on her sight words (Mummy fail - we have been kind of distracted this year) so we got them out today and tried to go through them.

Just quietly it was torture for me too.

Thursday, July 5, 2012

July 5: On A Mission


Ashlea loves to swing :)

I want one of these swings for her - I am making it my next funding mission.  At the moment she can just squeeze into the babyseat on Kate's swing next door - but the day is coming where we won't be able to get her out without assistance from the fire brigade.

I have seen this swing set online - and can import it to Australia for the cost of buying the seat alone here.  What do you think?  Has anyone seen any others that look good?  Or any that I can purchase here?

The great thing about this one is that Ashlea's swing seat would somehow be joined to the regular swingseat - which means that when one of the other girls is swinging their momentum would propel her too.  Some people are geniuses aren't they??

Wednesday, July 4, 2012

July 4: Fifteen!


It's hard to see in this picture but clutched in Ashlea's fingers is a cheese and bacon ball - one of fifteen she ate today!  FIFTEEN!!  All actually eaten.  Completely gone eaten.  She is now able to put a whole cheese and bacon ball in her mouth, chomp/suck it and swallow (with some coaxing). At first I thought the other kids had been 'helping' her by eating her cheese and bacon balls - so today I counted them out and watched how many she ate only to be utterly amazed that it was all her!  What an achievement!

(And for those of you wondering why on earth I would choose cheese and bacon balls as a first food it is because they have lots of flavour and dissolve on their own in your mouth - meaning that even if you can't chew well you can suck them into oblivion.  Trust me - this is a speech therapist approved first food!).

Tuesday, July 3, 2012

July 3: A Milestone?

Miss Ashlea has lost her first two teeth - I consider that a small m milestone.


A big M milestone would be something more like being deliberately naughty and then blaming someone else - now that is an achievement!

Ashlea has indeed learnt this new skill.  She BIT Jeremy from next door and when he started howling - before we even got the chance to ask him what happened she yelled out her defence: 

He touched Ashlea's teeth!

Hilarious.  I think in actual fact he probably did touch her teeth and that is how he got bitten but it was still pretty funny.  I'm fairly sure it is the first time Ashlea has been the one needing to apologise to another child - surely that counts as a developmental milestone???

Monday, July 2, 2012

July 2: Bloods

Some things continue on regardless of school holidays.


Ashlea had bloods this morning.  Her numbers were good as usual - today her creatinine was 40 (remember when it was 440+ - it doesn't seem like that was only 3 months ago!).

Last week when she had bloods she had extra tests done to check for some of the viruses that can cause nasty complications for kidney transplant patients (BK virus, CMV and EBV).  All those viruses are relatively harmless for a healthy person but are very bad for transplant patients.  So far she is still negative for all those viruses which is great.

Look how brave she is for blood tests now.  Years ago when I had to practically lay on top of her to hold her down while she screamed and thrashed around I could have never imagined blood tests being so easy.  Thank God that things have gotten better.


Sunday, July 1, 2012

Photo A Day: July 1

I'm feeling inspired to try doing a photo a day again.  I really enjoyed it when I did it in January and I thought it might be a good way of making me focus on the many good things going on in my life rather than just the difficult things.  Also I have barely taken a photo for the last 3 months and I really want to get back into it - it's the only thing I could vaguely call a hobby - and I think I need a hobby at the moment!

So for the first day of course I am cheating and putting up a photo I took yesterday (sorry - I suspect most photos will be phone snaps this time too).  Yesterday Murray and I finally got to have a coffee together at an actual cafe rather than in a hospital cafeteria.  We went into the city to see the World Press Photo exhibition at the State Library and then had lunch.



Anyone who knows Murray will know he NEVER smiles for photos - he is smiling here because I told him he looked like a serial killer in the first photo I took and that I would put it on the blog unless he came up with something better!