Wednesday, June 29, 2011

Special Exposure Wednesday: Cheat!!


The other day Audrey and I were playing Hungry Hungry Hippos. Ashlea decided she wanted to join in - however she can't work the little hippo handle thingies. She thought it was far more effective just to try and grab the balls while we were playing.  It was a surprisingly effective technique - she somehow managed to collect enough to be competitive.



Actually lets take a closer look at that. Not only is she grabbing the balls in the middle of the play area - she is trying to take them out of Audrey's hippo's mouth!




Is wanting to win genetic???
Her reaction??

For more Special Exposure Wednesday click here.

Sunday, June 26, 2011

What did you say your name was???



I was out shopping with the girls the other day as Ashlea and Audrey had to buy a birthday present for a preschool party they were invited to (yay!).  A disco party (not so yay).  Anyone want to take a guess at how long Ashlea lasted???

Anyway, we were at the shops when I noticed another family of 3 girls browsing the toy aisles.  Two of the girls called out to their sister - Ashley, Ashley they said.

Cute, I thought.  They have an Ashlea too.

A few minutes later I heard the mum calling out to one of her other kids.  Audrey, Audrey where are you?

Hmm, now I was interested, and being a natural born sticky beak I asked the mum if her girls were in  fact named Ashley and Audrey and if they were twins.

Yes they were named Ashley and Audrey (but not twins).  How bizarre!!  We all had a bit of a chuckle, and then Emma piped up and said "That's funny, we've got an Audrey and an Ashlea too.  I'm Emma"

The other mum just looked at me and pointed to her older daughter - whose name was also Emma.

How weird.  We each have 3 girls with the same 3 names in the same order - Emma, Ashlea and Audrey.

I didn't dare ask if the mother's name was Alison - just in case we ripped apart the space/time continuum and disappeared into a black hole by coming face to face with our doppelgangers (in name anyway).

Anyone else had any bizarre experiences like that?

Friday, June 24, 2011

The perfect date...

We have a date!!!

And what a beautiful date it is.

Ashlea's transplant is scheduled for the 11th November.


The 11th November 2011.  11-11-11.

I LOVE the date.  I wonder if they'd do the surgery at 11am for me???

I love that it is scheduled for Remembrance Day.  I always try and stop for a minute at 11am on the 11th November to remember all those who have fought in war.  I particularly think of my Grandfather who was at the Great War on the original Armistice Day.  I try and imainge how he felt.  The war was finally over.

What relief.

It was over.

They had survived.

I love the symmetry that now not only will November the 11th be Remembrance Day for everyone, it will also be our own personal Remembrance Day.  Hopefully it will come with the same emotions.

What a relief.

Its over now.

We survived.

Tuesday, June 21, 2011

Oops, I did it again...



I think I may have just consented to letting RPA Where Are They Now? film Ashlea's kidney transplant.

I don't know if it is the right decision.  In the past I have been much more sure about saying yes to the filming.  When I was pregnant with the girls I wasn't expecting them both to survive.  I figured that if one (or both) of them were to die, I would need that video footage to help me with the grieving process.

Then when they filmed us in 2009 I felt very strongly about the importance of telling people that its OK to not get the 'fairy tale ending'.  A lot of medical shows only show people who go on to do really well.  I wanted people to know the reality of having an extremely sick, premature baby, but also to know that life is still good.  Its different to what we imagined, but we are still incredibly thankful to have Ashlea with us.

This time, I don't know.  I think I am just really curious to see what my kidney looks like before it goes into Ashlea.  The sticky beak in me can't pass up that opportunity.  I don't know if thats a good enough reason to risk embarrassing myself on national television though!

What do you think?  Have the viewing population of Australia had enough of us?  Or do you think it is worth it so that people can see 'how the story ends?'

Sunday, June 19, 2011

Siblings


For some reason I have been thinking about the issue of siblings recently.  Do you worry about the effects of being a 'sibling' on your children?  Do your 'typically developing' children have a good relationship with their 'unique' sibling?  Do you think being a 'sibling' is having a positive (or negative) effect on their development?  Do you do anything to specifically help the siblings cope with their brother or sister who has a disability?



I'm not overly worried about Emma's relationship with Ashlea, or with how she feels about having a sibling with a disability.  She seems to understand that Ashlea has a disability and that it needs to be accommodated.  She has even been known to take me to task if I get frustrated with Ashlea and will tell me "MUM, Ashlea's DISABLED.  She can't help it" if I get impatient.  At school she told off one of her friends who was teasing a girl in a wheelchair, by telling him "She can't help it, she's disabled.  Don't tease her".  While we obviously need to work on using more inclusive language, I love that Emma sticks up for Ashlea and other children who have a disability.  She is becoming a little advocate and has even been known to (loudly) announce "Where's the ramp?" when we've arrived somewhere not very accessible.  I love that she is growing up expecting that there should be disabled access everywhere we go.  If only everyone thought like that.  I love that Emma just accepts Ashlea - and others with a disability - just as they are.



Audrey on the other hand I'm not so sure about.  She isn't as close to Ashlea as Emma is, and really doesn't seem that interested in her at all.  If she thinks Ashlea is going to get hurt she will freak out and start screaming for me to come and help, otherwise it would be hard to tell how she felt about her.  I don't know whether to be concerned, or whether this dynamic has just grown out of the reality that Ashlea was very non-interactive for a very long time, so Audrey just naturally followed after Emma.  I feel like in the long term though - especially at school - it will be more of a burden on Audrey than Emma.  Audrey and Ashlea are twins.  Whenever Ashlea draws attention to herself at school Audrey is going to be associated with that - whether good or bad.  I am hoping it is a long way off, but I am sure there will come a day when she gets teased for having a sister with a disability.





I am glad that Emma and Audrey are close - and that they have a 'regular' sibling relationship with all its regular ups and downs.

While I was thinking about this issue I asked the girls what they thought of having a sister with a disability.  The following answers are exact quotes.

Emma's answer:
I think it's special, because there's not that many people that are disabled.  And because we can do lots of special things that you can only do if you have disabled people - like the Lord Mayors Picnic and going to Bear Cottage, and going to the deaf and blind children's thing (she means RIDBC), and the chocolate fountain party (Cerebral Palsy Alliance Christmas party).  I love her and I think its nice having her in our family.  But its hard because she cries when her (TV) show finishes - like the Night Garden and its hard because Mummy has to wipe her poos and she can't go to the toilet by herself.  I like her because she's special and I play games with her.
Audrey's answer:
I don't like it when Ashlea screams because she screams too loud.   

Audrey is hard to get an answer out of, so I decided to ask some specific questions.

What is it like having Ashlea at preschool?
Nice because Mrs Cook is with Ashlea who helps her. 
Whats a good thing about having Ashlea as a sister?
I don't know 
Do you like going to speech therapy / OT / physiotherapy?  Is that a good thing or a bad thing?
A good thing.
Finally I asked them both "Do you think it is a good thing or a bad thing having a sister with a disability?  
Emma:  A good thing.  I love her.  She's so cute.
Audrey:  A good thing.
Although when pressed I asked if they would rather Ashlea have a disability or be like 'just like them':
Audrey:   Be like us.
Emma:   Be just like she is. 

That probably sums it up.  You can see why I am a little worried about Audrey.  Obviously it is normal for the siblings to wish their brother or sister wasn't disabled, but I also love that Emma just loves Ashlea as she is.  If you ask her how she feels about Ashlea she will tell you that she just loves her.

I think I would like both the girls to get involved in some sibling groups as they get older.  I haven't heard of any for younger kids like mine, but if you know of some please let me know. The CPA are currently running a Masterchef themed group for older kids - mine are too young to participate but would LOVE that as they are currently obsessed with the show.

We are slowly making some 'real life' friends with siblings too which is good - and while I think of it - school holidays are coming up.  Who is free to come over for morning tea and a bit of informal sibling (and Mummy) interaction?

Thursday, June 16, 2011

Of Bears and Cottages

Today we got a call from the NUM at Bear Cottage asking us when we would like to come for respite.  It's pretty tragic that we haven't ever - not even once - had a holiday together as a family, so we are very excited to go and stay at Bear Cottage near the beach.  We have decided to wait until the September school holidays so that hopefully the weather will be a bit warmer.

The facilities sound great.  We will stay in a 2 bedroom apartment downstairs and they have booked Ashlea an upstairs bedroom where there is nursing supervision and hospital beds (so hopefully she can't fall out).  I'm not quite sure how that will work out, but we'll give it a go. They have a spa, toy room, sensory room, sensory garden, chef, play therapist - everything you could possibly need for a week's respite.  The timing will hopefully work out perfectly too - a nice break before the big T.

I am very excited that we have this opportunity for respite as a family, but to be honest it also brings up all those mixed feelings again.  Bear Cottage was originally set up as a children's hospice.  We are taking our first family holiday at a children's hospice.  I can cope with that because I know one of their aims is also to provide respite care - which is what we are going for. The idea though that we could be holidaying with people whose children are dying is heart wrenching.  Even the idea that we meet the critera to be able to go there is a reminder of how different our lives are now.

When the girls were freshly out of the nursery I found it very hard seeing other sick children, especially at the hospital.  My own grief over what had happened was so overwhelming.  It was like I wasn't just grieving for Ashlea, it was almost this collective sense of grief for all the children and families who found themselves in a position like ours - as crazy as that sounds.  It has taken me a long time to develop a thicker skin.  I now know how to go to the hospital and not 'see' what goes on there.  I focus on what I'm there for (and getting out the door quick smart) and don't really look around at anyone else.  At Bear Cottage we will be in close proximity with other families with sick children.  There will be time to look around.  There will be time to really see what's happening.

I'm not sure how much to tell Emma and Audrey about Bear Cottage.  They are beyond excited that we are going on a holiday to the beach.  They know that only sick children and their families get to go to Bear Cottage, but I want to shield them from the harsh reality that children can die. Mainly because I don't want them to make the connection and start worrying about if Ashlea is going to die.  As a worrier, I am raising another generation of worriers (not deliberately of course - but it seems to be an inherited trait!).

I think I'm just going to leave it at 'there will be other sick children there' without giving any further information.  We are going to have a holiday and focus on the fun and the positive.  If questions come up while we are there then obviously we'll deal with them at the time.

Now if those of you who pray could start putting in requests for warm sunny weather from 24th September to 1st October that would be much appreciated!

Monday, June 13, 2011

Random Long Weekend Ramblings

I hope you're all enjoying your long weekend.  We are having a very quiet one here seeing as the weather has been atrocious.

It was Murray's birthday on Saturday so the girls decided we should put every candle we own on his birthday cake.  Sadly that still only accounts for about half the number of candles required to accurately represent his age...




On Sunday I did some furniture re-arranging.  Why is that so therapeutic???  I turned one of our dining tables into a computer station - partly so that Ashlea can more easily access her computer and intellikeys, and partly so that when my working at home plan comes to fruition I will be all set.  I am very attached to my working from home plan and hope it comes to pass soon.  Note to self - probably a good idea to inform employer of said working from home plan at some point...

Of course Ashlea decided to help me while I was re-arranging the furniture.  By climbing IN the computer cupboard.  



And staying there...


Of course then she was joined by her sisters...



Once we were all set up Ashlea tried out her intellikeys...


Does anyone know where I can get US Legal size paper in Australia?  The intellikeys keyboard is designed for US Legal size paper, so when you make a custom overlay and print it on A4 paper it doesn't quite fit.  

Ashlea is struggling a bit to get the hang of the intellikeys so I'm still interested in checking out other keyboard / input options before we decide on one for school, so if you have any good ideas please leave them in the comments.  I think the hardest part for Ashlea isn't using the keyboard, it is understanding the concepts behind the programme she is trying to use.  At the moment we are using the Early Learning Suite and even though she knows all her colours she is struggling with even the most basic colour matching game.


Enjoy the remainder of your weekend.  I probably should get out of my pyjamas seeing as it is the middle of the afternoon.  Murray took Emma and Audrey bowling today but they had to bail as there was a 4 hour wait for a lane.  Unfortunately an indoor-playland-that-shall-remain-nameless-that-I-hate is right next door.  And the kids saw it.  And begged to go inside.  So Murray has been imprisoned there for the last few hours while I have been at home enjoying the silence.  Oh and folding a mountain of washing.

Friday, June 10, 2011

LFMF

When things are quiet at work, I love nothing more than reading failblog, damnyouautocorrect or LFMF (Learn From My Fail).

I thought on this fine Friday I would share with you some of my own fail wisdom....

LFMF #1
If you tell your psychologist to read your blog so she can find out if you got approved to give your daughter a kidney, you will find at your next appointment that she has printed out reems of pages from said blog and underlined many 'interesting' things that apparently need 'further discussion'.  LFMF.

LFMF #2
You all know how much I love my midazolam experiences at the dentist.  Here is what happens if you try and text too soon after your appointment...



Hmmmm....how to win friends and influence mums at the school gate...LFMF.


Anyone else got a fail they'd like to share???

Monday, June 6, 2011

School Technology - HELP!

Over the last term I have been gathering reports and letters to support Ashlea's school application.  We are applying for a placement for her in the physical support unit at our local school.  They are already set up for children with physical disabilities - everything is accessible and they have small class sizes.

I am now starting to think about how she is actually going to do her school work.  I have some ideas and I would like to know what you all think.

I am currently thinking Ashlea needs the following:
  •  a computer with either an intellikeys keyboard or large accessible keyboard of some sort.  I don't want to waste time with handwriting - Ashlea is never going to be able to keep up if she has to hand write.  She needs some sort of technology to help her record her school work.
  • a second computer monitor that displays what is on the smartboard in the classroom.  With her vision impairment there is just no way she will be able to see and take in what is on the board - she will need it right in front of her.
  • a CCTV book reader thingy (don't know the correct terminology on that one yet) - basically it is a  camera hooked up to a monitor - you place reading material under the camera and it magnifies it onto a screen.  Ashlea would be able to access many forms of printed material that way and it would mean the teachers wouldn't have to constantly enlarge print materials for her.  Actually I think we need one of these for home as well for doing homework.

So, that is my basic 'must have' list.  I am curious to see a dynavox in action just in case that would be an option for her.  She doesn't really need it for speech output though, but I have heard that it can act as an accessible computer???

Any other thoughts on what might work?  The key things the technology needs to help with are her physical limitations when it comes to writing, and her visual impairment.  We are going to organise a technology assessment at the RIDBC in the coming weeks so we can try a few of these things out - then will come the fun part - finding the funding for them!  I am also going to make an appointment with the school to see what they already have in place.  What I have heard from other parents though is that it is a very slow process for equipemnt to arrive - so I want to start the funding and ordering now in the hope that we will be ready to go at the beginning of the school year.

Any other suggestions?  Things I should check out?  Things that I should avoid???  What does your child use at school?  What works / doesn't work?

Thanks!!!

Friday, June 3, 2011

Consent

Today I signed the consent forms for my kidney surgery.

Funny how easy it was to give consent for my own surgery - I didn't even give it a second thought.   When it comes to Ashlea's consent forms I'm sure it will be a different story.  I will still sign them as I know a kidney transplant is her best long term option, but I am sure it will feel like a much bigger deal to give consent for her operation than for mine.

What if something goes wrong?  What if I give consent for this and 'something bad' happens?  You all know what 'something bad' is code for don't you?  I know it is unlikely that either of us will die, but the surgeon did have to warn me today that it is a risk of surgery no matter how unlikely.

I told him it wasn't an option.

And then I signed the consent form.

The surgeon decided that he will take my right kidney as it is the sligthly smaller one.  Even though the DMSA scan showed that my kidneys share the load evenly, on the CT scan the right kidney definitely looks smaller - so with my health in mind they have decided to leave me with my bigger left kidney.

Slowly, slowly we are getting all the boxes ticked for this transplant.  There is still a part of me that can't believe that this is happening to us, but it appears that it is definitely happening to us, so onward we go.