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.