Saturday, January 29, 2011

The holidays are over :(

School holidays are drawing to a close here - Emma is back to school on Monday, and Ashlea and Audrey are back to preschool on Tuesday.

As much as I love holidays - and not having to make lunches and iron uniforms - I am looking forward to Ashlea being back at preschool.  Both her and Audrey love preschool, but it is just SO GOOD for Ashlea.  She loves it.  She thrives there.

The only difficulty is that nearly all their class mates from last year have gone on to big school this year, meaning we have to start again with new children.  New children means new parents. New children and parents mean new questions.  As much as my skin has gotten thicker over the years, it still kind of stabs at the heart to know that my child is the one that stands out.

I am wondering if I should write a little letter to the other families to introduce her?  I don't think I did last year - although many of last year's parents already knew us because Audrey was at preschool the year before.

What do you think?

Part of me really can't be bothered.  I'm not going to have relationships with any of the mums seeing as I am working and don't have time to get to know them.  Also our kids will go to different schools so we really won't have any contact after this year.

Is it any of their business knowing more about Ashlea?

Would it help break down barriers do you think?

If I did write a note, could I mention that Ashlea is waiting for a kidney transplant and therefore is vulnerable to illness and that they should keep their snotty-nosed kids at home if they're sick? Or would that perhaps be going too far??

For the most part I find people are pretty good when it comes to accepting Ashlea.  They are often better than I expect them to be.  Last week we started in a new swimming class - with all new people - something I have done a few times now and always find daunting at first.  One of the activities the kids do is run across a little platform and dive into the water.  When it was Ashlea's turn and the instructor helped her 'run' across - and I use that term very loosely - our new classmates gave a little cheer for her.  I felt a little choked up.  I don't know where the line between patronising and genuine well wishing is, but it didn't feel patronising at the time.  It felt like they were happy seeing her having such a good time at swimming.  Maybe that's the lesson right there?  Maybe Ashlea needs no introduction and will just show them herself that in spite of the equipment she is just a kid who loves to go to preschool.

Friday, January 28, 2011

Sorry

Sorry for all the faffing about with the blog!

I decided to take up Sarah's suggestion and use the girls' new haircut pictures as my blog header. I of course then decided to change the width of the columns on the blog to fit the picture, which altered the formatting on a heap of posts, which really annoyed me so I edited some, which is why it looks like I've been making lots of changes (if you subscribe to posts).

So, sorry about that!

I'm not sure about the green theme, but I thought it matched all the green in the header.

I added some new links to blogs I find funny too ---->

Wednesday, January 26, 2011

Haircut Day

Its the last week of the school holidays Down Under, so its time to get around to some of those tasks that always get left until the end of the holidays.

Yesterday Emma and Audrey both had eye and dental checks, and after that all 3 girls had their hair cut. 

Hair cut day occurs but once a year in our house, because usually it is really unpleasant and involves much screaming and fussing from Miss Ashlea.  This year however was different.  This year we worked out the key to keeping her happy during a haircut.

It seems that watching episodes of the Night Garden on Mummy's phone is the antidote to haircut grief.  When the hairdresser first started touching Ashlea's hair, Ashlea gave her a look that very clearly said:

Don't touch me, Lady.

But then I said the magic words - Night Garden - and all was forgiven. She sat glued to the screen for the whole time.  Its quite a funny sight actually, because her vision is poor and the iphone screen so small she literally has the screen at the end of her nose.

Unfortunately we still did have to suffer through a tantrum - though not hair cut related.  She totally lost it when I turned the Night Garden off and told her we were going home.

You can't win 'em all, right?


Here are the girls with their new haircuts.

Ashlea with her tidied up piggies:


















Audrey wanted to keep her hair long and princess-y.  Here she is giving it an appropriately princess-y flick:


















Emma had the most cut off as she refuses to wear it tied back at school. She has to have it short to hopefully not catch the nits that seem to sweep through the class with alarming regularity. Her first words on getting home were I don't like having neat hair, I want to make it messy again.  I obliged by choosing a photo of her that shows her hair returning to its naturally scruffy state.



A surprisingly successful trip to the hairdresser - and the other good news - NO CAVITIES in their teeth and no glasses needed yet (although Audrey will definitely need them for school).

What are your haircut survival tips?

Friday, January 21, 2011

Setting a (bad) example

Do you ever feel pressure to be seen to be COPING, HAPPY and POSITIVE about disability?

Sometimes I feel like if I show frustration with Ashlea that I am betraying her in a way.  Everyone assumes that life with a disabled child is HARD, DIFFICULT and SAD, and I feel like if I let some of my frustration show that I am reinforcing that.

Today at swimming Ashlea was bored.  Who can guess what she does when bored?

Yep, she screams.

LOUDLY.

Not because she is unhappy.  She screams to entertain herself.  I think she enjoys the reaction it gets.  Today she was in full flight. Sometimes I give in to it and let her get out of the wheelchair because I know it will shut her up - which will make the other patrons thankful, but mostly I am trying to ignore it because if I give in to it I am just reinforcing that screaming works.

So I am trying to ignore the screaming when I hear this kid say to her:
Be Quiet.

Before I had even thought of what I was going to do or say, I had turned around and words were already coming out of my mouth:
Get over it. 
I told a 6 or 7 year old kid to get over it.

I am mortified.  I was so embarrassed by my behaviour that I avoided his mother for the rest of the swimming lesson.  I know I should have apologised, but I was too embarrassed to even speak to her.  Worse still I have got to see them again every week at swimming.

Have you ever responded badly to another child or adult's comment?

See I don't think I'd feel so bad if it was an adult that I had said it to, because adults should be old enough to realise that Ashlea can't help it. But I should not have said that to a kid.

I don't want to appear GRUMPY and SOUR and ANGRY so that people think I am bitter and resentful about having a child with a disability, because I'm not.  Its just that sometimes she drives me a little nuts. And I am definitely not a saint who is patient at all times.

Just as well Miss Ashlea is gorgeous and has these deliciously kissable cheeks.  I'm going to include a picture of the cheeks so that hopefully the last image in your mind when you leave here will be Ashlea's kissableness, rather than my impatience.

I know she has her eyes closed, but just look at those cheeks!

Wednesday, January 19, 2011

SEW: Favourite Christmas Present

Ashlea's favourite Christmas present this year is a music box from her Grandy.

Nusic Box  she says.

I need wind it up.

She's dancing.  The princess dancing.


























I'm not sure how long the princess will survive in Ashlea's curious little fingers, but for now it is a HUGE favourite.

What gifts were a hit in your house this Christmas?

For more pics click here for Special Exposure Wednesday

Monday, January 17, 2011

Ode to Midazolam

Oh Midazolam, How do I love thee?

Let me count the ways...

Magical
Illusory
Dreamland,
Alluring 
Zen,
Odontophobia
Leaves,
Alison is
Merry

Sorry - I couldn't think of a good word for 'hammered' that started with M.  Any suggestions?

I went to the dentist today.  Can you tell?

Usually I have IV sedation so that I am not aware of anything that is going on, but seeing as this was 'just a filling' - I decided to wear my big girl pants and try and stay awake for it.

Of course I am not enough of a big girl to be awake and sober - so they offered me oral midazolam for the procedure.  Seeing as I regularly give Ashlea midazolam, I felt it was a good idea - my duty even - to try it for myself.  I had the same combo as she gets for botox - midazolam and nitrous.

One word: NOICE.

So for anyone who is wondering what it is like for their kids when they are under the influence, here is the scoop.

It's AWESOME.

I was awake and aware of everything that was going on, but nothing bothered me.  It didn't bother me that I was at the dentist having a filling.  I just felt incredibly chilled.  I may have even been giggling at one point.

The only catch is that it wears off quite quickly, and the dentist pushed his luck by deciding to do a teeth cleaning and fluoride treatment while he was at it,  and then he decided that if he sliced into my gum that it might help my wisdom tooth finally come through. By the end of it all I was starting to feel decidedly less chilled - so I made it my business to suck on that gas like there was no tomorrow.

Does the fact that I don't drink make up for the fact that I like some medications just a little too much?  I do believe I may have even asked the dentist if he offered a delivery service.  Like, could he come and give me a hit before things like parent-teacher interviews? Sadly, no.

Saturday, January 15, 2011

Cubby!!!

It's here!  It's here!

Our wheelchair accessible cubby house is here!

The girls are all really excited, Ashlea in particular.  She tried very hard to be patient while it was being installed, but for about the last hour of the installation she told me every 30 seconds:
Want to play in cubby, Mummy.
Here it is - that's Ashlea's head in the window - there was no getting her out of there once she was allowed in:
















There is no way we would have been able to afford something like this if we had to pay for it ourselves.  After seeing a friend's accessible cubby, we decided to try applying for  FAF funding to cover the cost.  Seeing as we applied for an accessible cubby we received the full $2000 towards the cost (which was $2028 installed - from Playcraft Cubbies).

Woohoo!!

We had it installed adjacent to the ramp so that Ashlea can access it independently. Even though it is wheelchair accessible (for her chair anyway - I haven't tried any other chairs), she is mostly going to crawl in there as crawling gives her more freedom. You will notice it also has side rails, no ladders (much to Ashlea's horror) and no slippery dips. The idea was for it to be safe for all the children without the need for me to be there every second.

Come inside for some afternoon tea:
















Do you like your cubby Ashlea???
















Are you sure?
















So, who wants to come over for a play?

Wednesday, January 12, 2011

Of droughts and flooding rains

Dorothea Mackellar's famous poem describes Australia as a land of droughts and flooding rains.

She wasn't wrong.

After 10 years of drought, parts of Australia are now being inundated by flood.  It was only a year or so ago that other parts of Australia were so dry they suffered through our worst bushfires ever.

What a crazy country.

Lucky we love it.

For those of you who pray, please keep those affected by the floods in your prayers.  Even when the water starts to recede, it is going to be a HUGE job to clean up from this.

If you are able to donate you can do so here.

Sunday, January 9, 2011

Pssst...


















Can you keep a secret?

Today is my birthday.

My 40th birthday.

Ssshhhhh.  Don't tell anyone.  I am hoping to let it slip quietly into oblivion.

But don't worry, seeing as I'm not having a big soiree, I made sure I got a good present.  After all it is a 'significant' birthday.  I got the 105mm Macro f/2.8 lens for my camera.

Noice.

Friday, January 7, 2011

The Details

OK, so here's the lowdown on Ashlea's kidneys.

Since July last year her creatinine has gone from 210 to 277, which means her Glomerular Filtration Rate (GFR - measure of kidney function) has gone from around 19 (stage 4 - where she has been all along) to around 13 (stage 5 - end stage).

The treatment starts to change now that we have reached stage 5.  We are now staring down the barrel of a transplant or dialysis.  At this point we are heading towards transplant, because we believe Ashlea will have a better quality of life with a transplant rather than on long term dialysis.


The transplant is probably not going to be until the end of the year - although it does depend on Ashlea.  If she remains stable she will continue to wait, but if she deteriorates quickly she will be transplanted sooner.  The transplant list is very fluid, the child that needs the transplant the most goes to the top of the list, and those who are more stable wait.

This of course is all assuming that Murray or I can be her donor.  If one of us can't donate, and we need to wait for a deceased donor that takes a lot longer.  She would have to deteriorate further to the point where she needed dialysis, she would then have to do dialysis for a year and at the end of that year she would receive paediatric priority on the waiting list.  It could then take another year for a donor kidney to become available.

At this stage we are hoping to do a directed donation where Murray or I give her a kidney.  Murray, Ashlea and I are having our tissue typing blood tests done sometime in the next month.  That is the first step to determining if one of us can donate a kidney.  Based on blood type we can both donate, but we still might not be a good match (the fact that Ashlea has had prior blood transfusions could affect this).  Assuming one of us IS a match, that person then has to undergo a barrage of tests to make sure they are healthy and able to give a kidney.  Assuming that all goes smoothly and one of us is approved, we then just watch and wait for our spot on the list. 

Once everything is approved it can still take a long time.  As I said the list is very fluid and based on priority, so even if we get everything approved in a couple of months, Ashlea could remain stable and it could still be a year or two.  The doctor's gut feeling was that it would be likely to be near the end of the year that she would need it.  Her next blood test will give us more of an idea - if her creatinine has stabilised then we might have a bit longer, but if it continues climbing then obviously it will be sooner.

Make sense?  Sorry for the information overload. 

This is big. 

BIG big. 

I feel like I have the power to decide whether Ashlea lives or dies in my hands.  As her parents it is our choice whether we want her to have a transplant, or dialysis or no treatment at all.  What is best for Ashlea?  If she didn't have other disabilities none of this would come into question, but seeing as she is who she is, the question does have to be asked.

Is this the right thing for her? 

How much treatment is too much? 

Is there a point we should stop?

There probably is a stopping point, but thankfully we're not there yet.

What a year it's going to be!!

Wednesday, January 5, 2011

It's time


















It's time for this gorgeous girl to start gearing up for her next big fight.

Yesterday we saw the kidney specialist to talk about her rising creatinine levels.

It's time to start the work up for Ashlea's kidney transplant.  Her GFR is now 13, pushing her from Chronic Renal Failure (stage 4 CKD)  into the territory of End Stage Renal Failure (stage 5 CKD).

I'll be back later in the week with more details.  In the meantime, click here to see more gorgeous children fighting their own big fights in Special Exposure Wednesday.