Wednesday, August 31, 2011

Hello Ducky

Ashlea currently has an obsession with ducks.  This obsession has been going on awhile actually - she has a variety of toy ducks that she plays with, and has even taken to calling me Ducky.

Hello Mama Duck she says to me.

Hello Daddy Duck.

Hello Aunty Carolin Duck - you get the picture.

It is VERY cute.

We had the chance to meet a duck last week.  The kindifarm people weren't planning on getting the duck out to play so I made a special request for Ashlea to see it.  Don't you love how requests that would normally get turned down get agreed to when a cute child in a wheelchair is the one asking???

So, here is Ashlea talking to her friend the Duck.  I'm not sure what she's saying to him but he looks thrilled don't you think???

Edited to add the link to Special Exposure Wednesday.

Friday, August 26, 2011

What went wrong?

The last few weeks have been incredibly hard for me - not because of anything going on with the transplant - but because at the ripe old age of 40 my best friend and I have had a major falling out.

How can this happen?  We're too old for this shit!!!

I am absolutely devestated and have no idea what to do to repair the friendship. I feel like I need to talk to her about it, but for the first time ever in our friendship she doesn't want to speak to me.  I do understand that its hard to talk to someone when you're hurting, but I guess I am frustrated because I am really hurt too - and am trying to reassure her (and me) that our frendship will survive this, but I haven't gotten any response.

(For those wondering about the wisdom of blogging about this - no she doesn't usually read the blog and besides she has gone overseas for 6 weeks so by the time she gets back this post will have sunk into oblivion.  On the off chance she does read the post I can assure her and all of you that this is in no way meant to be hurtful - I just can't not talk about this because it is such a big thing for me.  If any of you think that this post could be damaging then I will edit it or remove it).
What I do know is that I'm completely devestated and don't know what to do next.  I have not been this upset about something for a very long time.  I still don't know quite how things went so wrong?  Usually I am a 'hold it all together' kind of person, but I can not stop crying about this.  I don't know if it is becuase this actual situation warrants this many tears, or if it is because ALL of the grief and worry and stress of 2011 is coming out my eyeballs right now - and this is just the trigger.

The whole thing has made me realise how alone I feel.  I don't have a lot of friends - at the new church everyone is new, at the old church most people are 'Sunday friends' - meaning we really only see each other at church but  don't hang out together.  All the school mum friends I have are new friends too - and I haven't really had the time to put into cultivating those friendships because life is just so busy.  I am really hoping  to make some good friends at the new church and at school - people who we see on Sunday but who we can also hang out with at other times - and have a real sense of community with. 

Wednesday, August 24, 2011

Special Exposure Wednesday: Games

Do any of your kids with special needs enjoy playing games?

Ashlea is just starting to discover game playing.  Her favourite - and pretty much the only game she 'gets' - is hide and seek, although this photo is of her 'playing' snakes and ladders.  As you can imagine the other kids get frustrated when she lies on the board holding the pieces.  Hide and seek however is a winner with everyone and even though she struggles to play independently, she understands and enjoys the idea behind it.

She often asks adults to play with her - but she usually 'asks' by saying 'She might play hide and seek with you' until the person gets the hint to play hide and seek.

The other day she crawled up to Audrey and asked to play hide and seek with her.

Audrey she said.

Audrey!  (Audrey was watching TV).

By this time she is right in Audrey's face.

Audrey want play hide and seek with me.

I nearly melted.  She asked her sister to play a game with her!

She asked Emma yesterday too.  What a gorgeous moment.

Emma and Audrey both obliged by playing hide and seek with her.  They are both very good at playing with her and make a big fuss of looking for her - even when her idea of 'hiding' is lying in the middle of the floor giggling.  They then hide in places easy enough for Ashlea to find - or they give her clues (for some reason they like to make quacking noises as their clue) to help her find them.  Obviously I have to help Ashlea play, but this beginning of independent play with her sisters is just beautiful.

I can't tell you how much I LOVE seeing them play together.

For more Special Exposure Wednesday click here.

Sunday, August 21, 2011

The end of an era...

Today was Audrey and Ashlea's preschool church service - their last one ever.

I think Ashlea actually coped better last year - in some ways her sensitivities to noise and new environments are stronger than ever.  She lost the plot as soon as the children came into the church so I took her outside until it was time for them to get up on the stage.  Unbeknownst to me while I was outside the people running the service asked the children to volunteer some of their parents to come up on stage and pretend to be at preschool.  Typically when something like that happens Murray and I avoid all eye contact with the children so they can't volunteer us - but somehow this time Audrey managed to volunteer Murray to get up on stage - which surprisingly he did.  Unfortunately being outside meant that I completely missed - and have no video or camera footage to offer you all as proof - that Murray was forced to sing Twinkle Twinkle Little Star up on stage in front of all the other parents.  I realise he is probably happy that there is no permanent record of this but I can't believe I missed it!  Anyone who knows Murray in real life will know that that is SO NOT HIM!!

After nearly being upstaged by their dad it was the children's turn to get up on stage.

Here they are in their final preschool service - standing on stage so sweetly:

Cute hey?

In reality it was more like this:

She managed to stay on stage though.  There wasn't much singing although she did manage a couple of the actions and she didn't have a total meltdown.  It's as much of a success as we could have hoped for!

I can't believe we are nearing the end of our time at preschool.  Sob.  All three of my girls have loved preschool but for Ashlea in particular it has been a wonderful experience - and will most likely be her best ever experience of full inclusion in a classroom.  I can't imagine not being at preschool and seeing our wonderful teachers next year - especially Mrs Cook - who has been amazing with Ashlea.

How did that time go so fast???

Friday, August 19, 2011

The 12 Days of Crazy

To be sung to the tune of 'The 12 Days of Christmas'.
A summary of the last fortnight.

On the first day of crazy the universe sent to me...ONE COUGHING child.

On the 2nd day of crazy the universe sent to me....TWO hours waiting (at the children's hospital)

On the 3rd day of crazy the universe sent to me... THREE calls to Telstra (with no resolution to my problem)

On the 4th day of crazy the universe sent to me...A horror school meeting

On the 5th day of crazy the universe sent to lesbian blindside

On the 6th day of crazy the universe sent to me...a husband with a backache

On the 7th day of crazy the universe sent to me...a children's fairy party

On the 8th day of crazy the universe sent to unnecessary trip to the hospital to pee in a cup

On the 9th day of crazy the universe sent to me...bad news about Ashlea's hips

On the 10th day of crazy the universe sent to me....ANOTHER coughing child

On the 11th day of crazy the universe sent to overheating car

On the 12th day of crazy the universe sent to me... a party at an indoor play centre.

Chorus - sing along with me...

One playcentre party,
one overheating car,
one coughing child,
bad news about her hips
an unnecessary trip to the hospital,
one lesbian blindside,
one horror school meeting
3 calls to telstra
2 hours waiting
and 1 child who still can't stop coughing.

Anyone got one to add?

Wednesday, August 17, 2011

Special Exposure Wednesday: Kraft!

Here is Ashlea doing some craft.

Or should I say Kraft?

Can anyone tell what she is using to draw on the concrete with???

PS...Today is 3 months until transplant...the countdown is on.

For more Special Exposure Wednesday click here.

Sunday, August 14, 2011

Party Progress

Ashlea and Audrey had a birthday party to attend today.  I am amazed at how much Ashlea's party tolerance has improved.  She tolerated the party entertainer (a fairy) - she didn't want to sit on the mat with the other children but was happy to sit close by in her wheelchair - and she then orchestrated all the other kids on the trampoline with her command of "I want to bounce", which meant they all had to bounce the trampoline for her.  She even coped with happy birthday - she knew it was coming so put her hands over her ears and started humming from well in advance until well after it was over.

There was one other big success.  Can anyone tell what it was???

Thursday, August 11, 2011

Going into battle

Today I had a meeting with the Principal of the school I want Ashlea to attend next year.

Talk about frustrating.

I thought I was going there to sign off on Ashlea's application forms.  The application wasn't ready for me to sign, rather the school used the opportunity to encourage me to apply to other schools.  They kept stressing that they can't guarantee Ashlea a place at the school - which I understand - I know it isn't the school's decision, it's the all powerful panel's decision.  That would be the panel that has never met or even laid eyes of any of the children it is placing...but I digress.

As you know I am applying for Ashlea to be in the physical support unit at our local school.  If a place can't be found in the unit for her, she will attend the school in mainstream kindergarten. The principal today strongly encouraged me to put some special schools down as an option on the application form, all the while telling me how difficult it would be for everyone if Ashlea were to be in mainstream kindy.

Um, excuse me, I don't care if it is difficult for you to accommodate my child at school.  It is her right to get an education at her local public school.

Of course I didn't say that to them.  I sat there quietly fuming but biting my tongue because I know I still have another 7 years of dealing with the school - I can't burn any bridges yet.  Also I was so frustrated that I knew I would probably end up crying in front of them - and like I said - I have 7 years of negotiations ahead of me - I'm not going to be pigeon-holed as the hysterical parent, because generally I am not the hysterical parent.  It's just that sometimes it seems like the whole disability system is designed to wear us parents down so that we don't have any fight left in us - and then when we give up in despair the system can continue on as it always has done.

They told me to consider going to visit some special schools in the next week and put them on my application.  I don't think they thought my answer of "I don't have the time" was good enough.  But seriously - I work and we are in the middle of preparing for a kidney transplant - I don't have time!  Come to think of it I don't think they liked my blanket "She's not attending special school" statement either.

Sorry for the mega whinge - but I am mega frustrated - so I am going to continue for a little while longer...

I don't want to list any special schools on the application form because I am concerned that it would then be too easy for 'the panel' to place Ashlea in a special school.  A special school is not my first choice for her as I feel that language and socialisation are Ashlea's strong points.  My concern with a special school is that there would be a lot more non-verbal children there and Ashlea wouldn't be as stimulated in that area.  Also, I want all my children to attend the same school - is that too much to ask???  My concern however is that if Ashlea doesn't get a place in the unit, then mainstreaming her at a school that looks at all the difficulties associated with mainstreaming, rather than the benefits means that I will likely have to battle with them on every front - which I seriously don't have the energy for right now.  

I couldn't even get a direct answer from them when I asked if they thought Ashlea wasn't suitable for the school.  I think she is suitable for the school, but if they don't think she is then that gives me a good insight into where they are coming from and what we may be up against.

Now I understand why all my friends with kids who started school this year were tearing their hair out this time last year!  What an unnecessarily difficult process this is.

Tuesday, August 9, 2011

Kidney Update

This afternoon Ashlea had an appointment with her kidney specialist.  We haven't had a check up for two months so my heart was in my mouth as we waited for Ashlea's blood results.  After all our mental preparation for a November transplant I was half expecting a huge change in creatinine and therefore a change to the transplant date.

Here are the results:
Creatinine 395 (up from 349)
Urea 14.7 (better than expected)
Potassium 4
Sodium 137
Haemoglobin 112

We are still on track for a November transplant, but much to my horror they have changed the date anyway!  Apparently there was a clash with a liver transplant and who knew, but livers trump kidneys.  Our new date is 17-11-11.  It just doesn't have the same ring to it I'm afraid, but what can you do?

I really struggled at the hospital today.  I just did not want to be there.  I know no one ever wants to go to hospital appointments, but usually I just try and accept that it is part of our lives.  Today it didn't work.  It really got under my skin that this is our life, and that other people don't have to deal with all this crap.  Ashlea was a trooper though.  She cried during her blood test - but no more than any other child - which is a huge improvement on her screaming, thrashing ways of the past.  She also lay still-ish for a hip x-ray, co-operated without even a whimper for her blood pressure, and barely a whimper for the weighing and measuring.  She did keep up her refrain of  "Is is time to say bye-bye yet?" but I think that's fair enough.

So - reality check - this is definitely happening.  In November.  Can someone remind me how we got here?

Saturday, August 6, 2011

So, here's how it went...

We survived the appointment on Wednesday

Not being a fan of group therapy, I mainly used the time to raise some issues that I don't think the medical team have thought of yet.  Things like:

  • what sort of hospital bed will they provide for Ashlea's safety, 
  • is there an outreach nurse who can come to our house for the daily blood tests following the surgery,
  • can Ashlea have a central line rather than being traumatised every day for 2 months with blood tests, and 
  • don't forget she can't swallow - anything - so make sure all medications are in liquid form

The psychologists promised to follow up on those things and unless we feel we need to see them again they won't see us until the transplant has taken place. 

They did ask the children a few questions to see how much they understood.

Ashlea's response?
Is it time to say good-bye yet?
Amen to that.

Emma was quite cagey with her responses which I think shows she is quite anxious about the whole thing.  She is prone to anxiety so it will be hard on her - and Audrey too.

At the end of the session the psychologist turned to me and asked me if I had any concerns about the transplant.

Um, I don't know - maybe that Ashlea or I could die.

Is she serious?  She's already seen that my kids are anxious about the situation - does she really expect me to answer that in front of them?

(Disclaimer - I know it is very unlikely either of us will die - but it is major surgery and I am a natural born worrier.  If it's only a little worry I don't bother with it anymore - but I do go to town on the big ones).

Needless to say she got a very guarded answer.

Tuesday, August 2, 2011

Do we have to?

Tomorrow we have a hospital appointment.

The whole family. 

All five of us.

To see the hospital psychologist to talk about the transplant.


Do we have to?

Can't they just take my kidney out and be done with it?  Do I have to talk about it too???

Someone wish the psychologist luck.  It's her job to try and talk to this little chook about how she feels about the transplant.  I'll let you know how that goes shall I???