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!