Saturday, December 31, 2011

New Year's Humbug

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...

Tuesday, December 27, 2011

I am Ducky hear me Quack!

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!

Saturday, December 24, 2011

Christmas Newsletter 2011

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!!!

Thursday, December 22, 2011

And the number is...

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!

Monday, December 19, 2011

Stinky Bottom Blood Test Results

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!!!

Thursday, December 15, 2011

BEST preschool concert ever!!!

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!


Sunday, December 11, 2011

More Santa

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!

Wednesday, December 7, 2011

RIDBC Graduation

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!!!

Saturday, December 3, 2011

House Guests

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!

Wednesday, November 30, 2011

Twin-ness

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...



Monday, November 28, 2011

Wow - he PASSED

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

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.

Friday, November 25, 2011

What do you think of this???

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.

Tuesday, November 22, 2011

Kidney Appointment

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.

Thursday, November 17, 2011

It's Not Transplant Day

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!***

Monday, November 14, 2011

When I grow up...

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!!

Friday, November 11, 2011

Ghosts

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?'

Wednesday, November 9, 2011

Funny how 'it's all still there'

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!

Sunday, November 6, 2011

I want to go in the pool...

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??

Thursday, November 3, 2011

Kindy Orientation

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???

Tuesday, November 1, 2011

Final Crossmatch Results

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.

Sunday, October 30, 2011

An Ashlea-ism

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!

Wednesday, October 26, 2011

I love my iPad!

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. 

Monday, October 24, 2011

How am I?

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?

Thursday, October 20, 2011

Did she just say CANCELLED???

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.

Tuesday, October 18, 2011

Kidney Appointment

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?

Sunday, October 16, 2011

Thank You Gladesville

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 17th 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.

Wednesday, October 12, 2011

The first of the lasts....

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'.

Friday, October 7, 2011

Sleep! Sleep! Wherefore art thou???

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?

Tuesday, October 4, 2011

So thankful

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.

Saturday, October 1, 2011

Bear Cottage Highlights

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!