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!