Thursday, March 31, 2011

Happy Birthday Emma

My gorgeous big girl turns 7 today.

How did that happen?


















What a funny little person she is growing into.

She has such a big personality in her pint sized body.  She always has a smile and something to say.  She loves to make mud pies, play Wii and run around the backyard screeching and pretending to be a wild animal.  Dolls and princesses are not her thing.  In many ways she can be quite a hand full, but she has this lovely spark about her that I just adore.

Happy Birthday Emma.  We love you very much.

Monday, March 28, 2011

5 Year Developmental Assessments

Today Audrey and Ashlea had their 5 year assessments at RPA.

How has it been 5 years since we were there?

Ashlea:



















Audrey:



















I find it very hard to go back to the NICU physically without going back emotionally too.  The first thing that hits you when you go in is the smell of chlorhexidine - and with that suffocating smell comes all the memories.  I seriously feel like I can't breath when I'm in there.

A lot of the nursing staff have changed since we were there, but today we managed to see our neonatologist and two nurses who looked after the girls.  They weren't just any nurses either - they were both very significant in the care of Ashlea - and Murray and I.  It was lovely to see them - and for them to see Ashlea doing so well.  The best part was that I had prepared in advance for our visit and taken the Kaye walker with us.  Normally I don't take it when we're out because Ashlea isn't very stable in it, but this is probably Ashlea's last ever opportunity to go into the nursery and I can tell you there is no way I was wheeling her in.

She walked in.

My Ashlea walked into the nursery.

The very same nursery where she nearly died and where they predicted such dire things for her future.

She walked in and visited her doctor and 2 of our favourite nurses.

She walked in and said hello to them.

It was one of those moments that only lasted a few seconds but the impact was huge.  For me anyway.  For Ashlea it was just another hospital appointment.  But for me it was indescribable.

Both my babies walked into the nursery today.

Enough said.  Who gives a rats about what the reports say?  Who cares how badly Ashlea scored on any assessment - she walked into the nursery.

When I get the reports I will let you all know how the girls did, but for today I am just going to savour this moment.

Both my girls walked in to the nursery.

The icing on the cake was that their doctor commented on how they still look so much alike in spite of their different circumstances.  I could have kissed him.

Friday, March 25, 2011

That's so exciting

Everyone keeps telling me how exciting it is that I am a good kidney match for Ashlea.

Don't get me wrong - it is a huge relief to know we have this option and I am happy that I can give Ashlea this gift - but I don't feel excited about it.

Should I?

Mostly I just feel stressed.

I can't believe we actually have to go through this.

We've got to actually LIVE it.

It's interesting seeing people's reactions.  Some people still fail to grasp how big this is.

It's BIG big.

I can barely grasp how big it is and I'm in the middle of it.

It's one thing to have in the back of your mind that one day your child will need a kidney transplant, but when it becomes a reality that it is happening now it is still a lot to take in.

It still shocks me that this is happening to us.  Isn't this what happens to other people???

How did we get here?

Wednesday, March 23, 2011

The next steps...

Today we saw Ashlea's kidney specialist.  I can't think of how to organise all the information that is in my head, so I am just going to give you the question and answer conversation I had with the doctor.

Firstly we had bloods done.  Ashlea's creatinine is up again.  5 weeks ago it was 341 and today it was 387. I can't believe how quickly it is climbing.  This time last year it was 210 and stable (GFR of 19).  Now it is 387 - next time we see the doctor it will likely be over 400.  Yikes.  I'm pretty sure her GFR is now <10 but I'm not sure I really want to do the calculation.

And now for my questions...

Q. Do we have a 'slot' on the transplant calendar?
A. We are pencilled in for November - assuming I pass all the tests.

OH.MY.GOODNESS.  It is all starting to become very real.  Is this really my life we are talking about???

Q. Can donating a kidney shorten my lifespan?
A. No, all the studies show that donors tend to live longer than the average 'Joe Bloggs' - mainly because they are a self-selected group.  That is, you have to be healthy to donate, therefore you are more likely to live longer than someone not healthy enough to donate.

I was relieved to hear this.  My Grandfather lived to be nearly 102 and I'd like to give him a run for his money!!

Q. What is the chance of 'something bad' happening to me?
A. Apparently there is a 1/10000 chance of dying.  I think they have only lost one donor in Australia and that was because she was obese.  They are now much stricter about who can donate.

Q. Could Ashlea die?
A. Unlikely.  Obviously her case won't be as straightforward as some other patients, but the survival statistics are 98% of Ashlea surviving the first year -  but this statistic takes into account ALL kidney patients and ALL causes of death.  Of the 100+ transplants done at our hospital one child died of an infection several months after transplant, and one died several years after transplant in a car accident (don't even get me started on how horrifying that would be as a parent to go through a kidney transplant with your child and then have them die in an accident). The chance of her not surviving the transplant is very small.

Q. How long will the kidney last?
A. According to the statistics there is a:
- 95% chance of the kidney surviving one year
- 85% chance of the kidney surviving two years
- 75% chance of the kidney surviving five years.
Again those stats take into account all types of kidney disease and transplants.  Hopefully Ashlea's kidney will last MUCH longer as she doesn't have a disease that will recur and affect the new kidney. Also her and I are a pretty close match (4/6) - sometimes when you get a kidney from the list you could be a 0/6 match but you still get the kidney as long as their are no positive antibodies on the cross-match.

Q. What happens next?
A. Ashlea's doctor writes a letter to the transplant co-ordinator who will then contact me.  He will arrange all of my testing for me.


Q. If there is gastro going around at preschool should we stay home?
A. Probably.  Gastro would dehydrate Ashlea and increase her creatinine.  In healthy people their creatinine would just come back down again but Ashlea's goes up and stays up.

Q. Can I have a copy of the tissue-typing?
A. Yes


Q. Will I need to fatten up?
A. Maybe.

I ran out of questions at that point.

The summary to all of that is that I now have to wait for the transplant co-ordinator to call me with details about my testing.

On the way out of the hospital we bumped into the social worker and she reminded me that after the transplant Ashlea will get a Make-A-Wish.  Lots of kids choose to go on a family holiday to the Gold Coast to go to Movie World, Sea World etc.  Seeing as we were just fantasising about that the other day with Emma and Audrey that sounds like a pretty good wish to me.  She also said she would try to get us a weekend at Bear Cottage down at Manly before the transplant.  The girls would LOVE to spend a weekend at the beach so hopefully she will be able to organise that for us.  We need it!!

I think that is all the news for now!  Sorry for the information overload, but I figured if I wrote it all down here I can refer back to it when I forget stuff!

Sunday, March 20, 2011

It's starting to sink in...

That I am going to be Ashlea's donor.

FAR OUT.

I have so many new things to worry about now. 

Will I pass the medical?  Will I actually be able to get in the MRI scanner without having a claustrophobic panic attack?

What if something happens to me?  What if I die?  Or have an 'adverse event' that leaves me unable to take care of my children?

Not that I care particularly if something happens to me as such, its more that I am Emma and Audrey's mum as well as Ashlea's.  I need to be around for them.  I need to be able to be their mum.

And then there is the whole How will Ashlea cope after surgery without me around?

How will I cope not being there? 

I am the one that Ashlea looks to for comfort.  I am the one that knows her best.  I am the one that can read her the best.  I am the one that knows what is normal behaviour for her, and what isn't and should be investigated by the doctors.  

I won't be there.

I need to be there.  To keep watch on the doctors and the machines and the numbers.  I am SO in need of knowing the numbers.

Creatinine?  Sodium?  Urea?  How much urine has she passed?  Is my kidney working in there???

I seriously think they should have a video link up between our rooms.  I will need to SEE her to know she is OK.  Just quietly we will likely do our own video link between the rooms - 2 laptops plus skype = happier mummy.

Have any of you ever not been able to be there for your child after surgery?  How did you stay sane?


** We will be at separate hospitals for anyone wondering why I won't be there.  She will be at the Children's hospital, I will be next door at the adult hospital.

Friday, March 18, 2011

Late Breaking News...

I just got word from the doctor that apparently I am a BRILLIANT match for Ashlea.

Murray is still a match and could give her a kidney if necessary, but I am the closer match.

I will find out more next week about what the next step involves.

The results are in....



The results are in!!

Based on the tissue typing Murray and I can BOTH give Ashlea a kidney.

I don't yet know if one of us is a better match than the other.  We are seeing the doctor next Wednesday and will be able to go through the results in more detail then.  From that appointment we will decide who will take the next step of going through the medical testing to see if they are healthy enough to donate.

I was worried that Ashlea would have high levels of anti-bodies in her system due to her previous blood transfusions.  That could have meant that neither of us would be able to give her a kidney, which would have necessitated her commencing dialysis and then going on the waiting list for a donor kidney.  The fact that Murray and I are both a match means that hopefully we can avoid dialysis altogether and go straight to transplant.

What a relief.

More details to come after we see the doctor next week...

Oh, and speaking of kidneys, Simone's book Kidney Kidnections is out.  It looks awesome and can be purchased from the Kidney Health Australia website.  Here is the link to Ashlea's story.

Wednesday, March 16, 2011

How long do you think it will last???

I have been introducing my big girls to the joy of chores.



The other day they got to unpack the dishwasher.  Their response??

Emma:  This is the BEST ever.
Audrey: Can we do this EVERY day?
Emma:  I wish we got to do the REAL cleaning!

Somehow I think the novelty will wear off, but I am enjoying having enthusiastic helpers while it lasts.  How long do you think I've got??

Monday, March 14, 2011

We're in sensory HELL


Ashlea is having a lot of sensory issues at the moment.

To say they are trying my patience is an understatement.  Even her beloved preschool teacher is finding it hard going at times.

We are increasing our OT sessions to weekly and trying to do lots of sensory stuff with Ashlea.  I am even looking into getting one of those therapy swings installed in our house!  If all else fails we are going to try brushing.  I had already planned to take a week off work during the Easter school holidays - it looks like I may have to spend that time brushing Ashlea - every 20 minutes.

By the end of it I may well be the one screaming!

We have taken a brush home from OT today to 'try it out' once a day and see how Ashlea tolerates it.  If it goes well we will make a plan for when to officially start brushing therapy.

Anyone done it?  Successfully?  All advice on dealing with Sensory Integration issues gratefully accepted!!

Friday, March 11, 2011

Seriously

We are still waiting for our results.



Seriously.

Something about the lab moving offices, blah, blah, blah. I might need to go down there personally and set up their new office just so they can find my results.

As frustrating as it is to wait, it seems like small potatoes compared to the unfolding tsunami in Japan.  I have been watching it live on TV.  How bizarre is the world we now live in that I can watch from another country while a tsunami destroys whole towns?

Wednesday, March 9, 2011

I fall over



On Sunday Ashlea decided that it would be fun to try and let go while standing in her walker.

You can guess how it all ended can't you?

See that concrete ground in the background?

Yep.

She fell.

Face first onto the concrete.  Fortunately her arms - which she was waving out in front of her - broke her fall so all she came away with was a grazed elbow.

The 3 adults - who were within arms reach at the time and still didn't manage to catch her - may have had minor coronaries.

Fortunately this was all that was required to make her feel better:



Had any sickening moments like that?

Sunday, March 6, 2011

The forgotten child




I found this video the other day of Audrey singing Twinkle Twinkle Little Star.  She must have been around 2 years old.  How cute is she?

When I watched the video it struck me that I really missed out on so much of her babyhood.  It was like I was seeing her for the first time.  Seeing her cuteness, her babyness.

I feel like I missed all that.

I was so caught up worrying about Ashlea that I missed out on so many little moments with Audrey.

I was talking to a school mum the other day and while we were chatting her 1 year old (also with blue eyes and blond hair) was falling asleep in her arms.  It really struck me that Audrey never got to do that.  Such a normal part of babyhood to fall asleep in your mother's arms.  Yet Audrey always had to sleep either in her cot - or in the pram if we were out - because I was busy wrestling with Ashlea (and yes that it was it felt like at the time).

Mummy guilt.

Do you feel that there is a particular child in your family that is the one that misses out?

Audrey is so unassuming.  She doesn't demand anything.  She is quiet and obedient.  Willing to please.

She is sandwiched in between Emma and Ashlea who are both high maintenance.  Emma is very in your face and demanding of attention.  Ashlea is Ashlea.  Audrey is in the middle.

How do you manage the needs of all your children?  And how do you manage the Mummy Guilt that goes with trying to manage the needs of all your children???

Friday, March 4, 2011

Still Waiting

Every day this week I have had the same conversation with the secretary of the Nephrology department (who I might add is AWESOME).

Me: Hi Julie. It's Alison here - Ashlea's mum. Have you checked the mail yet?
Julie: Hi Alison. Yes I've checked the mail. No news yet.
Me: OK. I'll call you again tomorrow.

And so we continue to wait, and I continue to wake up at 3am in a cold sweat.



This picture is Ashlea giving you a visual of how I'm feeling at the moment...

I'm now at the point where it is pretty much the only thing I can think about.  Every day I check my watch and wonder if it is too early to call yet?  Will she have checked the mail yet?  It's 2 o'clock, surely she'll have checked by now.

Thankfully Julie is the most helpful doctor's receptionist I have ever dealt with, and she is very patient and understanding!

Watch this space.... hopefully next week we will have some news.

In the meantime allow me to direct you to Ellen's AWESOME post on the Spread the word to end the word campaign.

Wednesday, March 2, 2011

Special Exposure Wednesday: Thanks John!



This is John.

This is John building us a ramp for our front door.



John is a friend from church.  He came and measured up for the ramp, then went away and built it and returned on the weekend to install it.

After he left Ashlea played "I want to go down..."



Which was of course followed by "I want to go up".

And then down again. And back up. You get the idea.

She did have a little stop at the bottom...  fortunately she hasn't yet worked out how this contraption works.  Well, actually I think she probably understands how it works, she just can't physically make it work.



Thankfully.

Everybody say 'Thanks John'.

For more Special Exposure Wednesday click here.