Friday, December 31, 2010

Happy New Year

As many of you know,  I don't love New Year's Eve.   My inner paranoid pessimist comes to the fore and I start to worry about all the things that might happen in the coming year.  Of course I worry about the bad things that might happen, and forget to think about all the good things that might happen!  Last year I wrote about my hopes and fears for the coming year, and in spite of my paranoia, most of the good things I hoped for happened, and the things I feared didn't happen.

This year I don't have the energy for resolutions or hopes or fears.  I'm just going to stick with my regular plan of not looking too far ahead, and trying to  take each day as it comes I think.

We are still going out to celebrate - in spite of my paranoia about the day!  We are going to the Lord Mayor's Picnic and to see the fireworks - the kids are really excited.  Let me rephrase that, Emma and Audrey are really excited.  Ashlea thinks she is excited because the other girls are - but that is only because she has forgotten what it is like when the fireworks actually go off.  As the fireworks go off, so does she.  Its hard to describe her reaction but try picturing me cuddling a little wild cat - clawing and yowling and writhing in my arms.

Happy New Year to all of you and your families.  I look forward to sharing another year of the ups and downs of life in the land of disability with all of you.  Hopefully we'll all have many more ups than downs!

Tuesday, December 28, 2010

Christmas Mishaps

Did you have any Christmas mishaps in your house???

We only had one - and thankfully it was minor.

It involved a Zhu Zhu pet (think toy rodent on wheels).  Apparently they have stickers on them saying to keep them away from hair. I didn't read that bit - mainly because I am now at the point where I can't read anything without my glasses - but also because I don't care much for instructions.

As usual when there is a mishap it involves Ashlea.  I heard her small voice:
I stuck Mummy.
I looked over and couldn't see how she was stuck as she was just lying on the floor playing with a toy.

When I went closer however, I discovered this:

Yes, stuck again.  This time her hair - attached to her "Suzie" pet (she hasn't quite got the hang of saying "Zhu Zhu" so she says "Where my Suzie pet?  I need find her"  Its pretty cute).

Unfortunately this was the only solution:

Once the shops open this week we will have to make an appointment for a haircut.  What a nightmare - Ashlea screams wildly throughout them, and I hate having to explain the state of her hair.  Yes she is missing clumps from where she pulls it out during a tantrum.  Yes it is really short in parts where she rubs her head on the floor.  YES I did cut that chunk out.

Ugh.  Wish me luck.

Oh, I just remembered another mishap - again involving Ashlea.  First a little bit of background info to set the scene.  As many of you know Ashlea is a bit of a parrot and repeats word for word LOTS of things she hears.  One of the things she hears is her sister yelling out from the toilet. 

OK, so we are all sitting at the table eating Christmas lunch.  Ashlea is with us in her high chair, babbling away as usual.  The adults are all talking not paying her much attention.  Clearly not happy with this, she yells out in her best sing-songy voice:

I done a POOO-OOOO 

Seeing as no one responded to her call, she repeated it.  Again.  And again.  Until she got the attention she desired.

So, did you have any Christmas mishaps?  If so, please tell!!!

Sunday, December 26, 2010

Christmas Day

How was Christmas Day in your house?  We had a great day.  Best. Christmas.  Ever.  according to the children - although they do say that every year.

Here are some pics.

My Christmas Eve Angels:

Our church has started a new Christmas Eve service for the littlies where they get to dress up.  As you can see I went to a lot of effort cutting that $5 table cloth in half for my girls angel costumes.  Ashlea had a baby blanket on her head and went as Mary.  Mary was a little unimpressed and spent most of the service having a screaming meltdown.  I don't remember that bit being in the bible, but seeing as the original Mary was giving birth in a stable maybe Ashlea was just trying to make it authentic.

On Christmas morning Emma woke up at the fine hour of 5:20am.  I managed to hold her off from the present opening until 6am - and then it was a frenzy of wrapping paper, twisty ties (oh my bleeding fingers) and excitement.  We then had all of our family over for Christmas lunch - cold chicken and ham and SALAD (I know those in the northern hemisphere will find that weird, but it is too damn hot here on Christmas to do the hot lunch thing).  We still do hot Christmas pudding  though!!  Some things are essential.

Then it was time to play:

First some Wii...

Then playing with the wrapping paper - always a highlight...

Then outside to play with  our new toys.  First rule of play - don't squirt Mummy while she is holding the camera!

Thank goodness for energetic friends who arrive mid-afternoon to entertain the kids...

I hope you all had a fabulous day with your special families.  

Thursday, December 23, 2010

Christmas News!!

For those that didn't receive the snail mail copy, here is our Christmas Newsletter for 2010.

It is that time of year again – already – which makes it time for some news from us!!

Murray and I are still at the same jobs, we still go to the same church, we still live in the same suburb…  you get the picture.  One change is that I have recently increased from working 1 day a week to 3 days a week - this has been a challenge to say the least – especially as it means that on the days that I work Murray has to get the girls up and dressed and out the door to school and preschool.  On time.   We are managing reasonably well although there may have been a day where Emma went to school with her shirt buttoned incorrectly AND both legs down one half of her culottes.  I was in no position to criticise though as that may have occurred in the same week that I wore my shirt inside out for an entire day at work without noticing.   I couldn’t say for sure…

Emma started big school this year and has really enjoyed kindergarten.  She got a great end of year report, saying that she always tries her best, has made progress in all key learning areas, participated enthusiastically in dance and is always keen to talk about her craft creations.  What more do you need from a kindy report?

Emma lost 6 teeth this year and gained 4 huge ones in their place, she had many parties to attend as well as her first trip to the ED – due to a split chin from a fall at school.  Thankfully she managed to do that on the same day Audrey mysteriously broke out in hives so at least we got a two-for-one deal.

Audrey had a great year at preschool this year and is looking forward to more of the same next year.  She loves dancing, Disney princesses, fairies, pussy cats and mermaids – which makes her the complete opposite of her big sister.  Audrey has been very well this year and continues to do well developmentally.  She will have another follow up at the hospital next year before big school, but we expect her to do well at that.  Audrey is nearly as big as Emma and they are great mates – in spite of the high pitched squealing that can be heard from time to time.

Ashlea has had a huge year this year.  HUGE I tell you!

Where shall I start?

This year she has learnt to sit on her bottom for short periods of time, she has learnt to pull up to stand against the furniture, cruise a few steps along the furniture, climb onto the couch, and biggest of all she has learnt to walk short distances in a kaye walker (hand held walker).  Originally when Ashlea was diagnosed with cerebral palsy these things were not even thought a possibility for her, so it has been amazing to see her achieve all these milestones.

Ashlea also took possession of her very first wheelchair early in the year.  This has given her great independence, especially at preschool.  She has attended preschool with Audrey this year and has blossomed through this experience.  She has had a fantastic SN teacher who has helped her participate in all preschool activities including bus excursions and climbing firemen’s ladders.

Ashlea’s kidneys continue to be relatively stable – her creatinine is around 246 and we are still hopeful of putting that transplant off for as long as possible.

Ashlea’s speech is developing nicely at the moment too, and I am afraid to report that she is showing the same bossy tendencies as her sisters.

Of course we have many people to thank - as usual too many to list – but I would like to say a very big thank you to all of you who help us out in so many ways.

I was trying to think of something clever or inspiring to end this letter with, but I can’t come up with anything original, so I’m going to copy something I wrote about our life with Ashlea for a book that is being published next year.  It is a book for parents of children with kidney disease, and Ashlea and many other gorgeous children like her are featured in it.  Here is what I wrote:

People often say to us “I don't know how you do it” or “I could never cope with that”, but the truth is if they were in our situation they could do it and they would cope with it. We love Ashlea. In our situation the alternative to looking after a child with these disabilities, would have been to bury a child. I know which I choose. Having a child with serious disabilities makes you realise what is important in life. It doesn't matter how smart you are, or how rich or successful you are. What matters is that you love, and are loved. Ashlea might not have the same quality of life as her twin, but she loves. And she is loved. What else is there? Before having Ashlea I could never have imagined coping in a situation like this, now I can't imagine my life without her.

So, if you’ve been reading this letter and thinking to yourself – I don’t know how they do it – there’s the answer.  Although there is more to it than that – it is not just about Ashlea being loved by us – her family and friends, it is also about her being loved by God, and about the certain future we are looking forward to – for her and for ourselves – in which these ‘light and momentary troubles are achieving for us an eternal glory that far outweighs them all’.  Bring that on!!

We hope you have a great Christmas and New Year and would love to catch up with you if you are around over the holidays!

Alison, Murray, Emma, Ashlea & Audrey

Tuesday, December 21, 2010

Strange Gifts

Have you received any dodgy gifts yet this Christmas?

Worse still are you planning on giving any???

I did actually receive the gift in this picture.  I thought by the shape of the box that the person (who shall remain nameless) had given me chocolates.  I was all excited about getting an unexpected present.

And then I opened it and discovered this:

How bizarre is that for a present?  At least it gave me a good laugh.

So, what is the strangest present you have ever received?  Feel free to name and shame the giver too if you like.  Or if you are planning on giving a dodgy present please confess and tell us what you're giving.  I'm prepared to offer up my set of miniature-chicken-family-knives as a prize to the person who has already received the worst gift.

See, its a gift that just keeps on giving.

Sunday, December 19, 2010

Heard in our house yesterday...

I have posted recently about Ashlea's new-found ability to be deliberately naughty (something she really enjoys I might add).  A frequent refrain in our house recently has been:
Mum!!  Ashlea's pulling my hair!
Yes, Ashlea has started the delightful habit of pulling her sister's hair and laughing at their reactions.

So I was not surprised to hear the call start up again yesterday:
Ashlea's pulling my hair!!
(You have to imagine the high-pitched whiny-voiced way they say it).

Except that this time the person calling out was Ashlea.  Pulling her own hair.  And dobbing herself in at the same time.

Friday, December 17, 2010

School Holidays!!

Yesterday was the first day of the school holidays!!  I can't believe my big girl has finished her first year of school!  Where did the year go?

How do you think we celebrated our first day off?

With a sleep in?

A trip to the park maybe?

Some shopping?

No, not us.

We started the holidays off with a surgery - thankfully only a minor one.

Ashlea had her PEG changed yesterday (to a Mic-Key).  I have BIG misgivings about this, but her old Entristar was so leaky we had to do something about it (and the surgeon said the new Entristars haven't been very reliable) so we went with a Mic-Key.  My biggest concern is that she will pull it out.  When she has a tantrum her first action is to open her PEG so it leaks everywhere.  If it is a beditme tantrum she pulls out the extension tube so that milk leaks everywhere too.  I am really worried about her pulling out the actual PEG early in the night and then me not realising until the next day.  What if the hole has already started to close over???  Please tell me this won't happen.  Much.

She also had an eye and dental exam.  I have been very worried about her teeth.  She has almost ground some of them down to the gums.  If you click on these photos to enlarge them you will see what I mean.

I'm hoping her new teeth will be huge choppers like Emma's so that at least it will take awhile for her to grind them down.  Better still, it would be nice to be done with the grinding by the time she gets her new ones!

In the end the dentist was fairly happy with her teeth and said there is no need for treatment at the moment.  The eye team were also happy - things seem fairly stable with her eyes, and her current glasses are the correct prescription so that is good.

We also got them to take blood while she was asleep (as she was due to have bloods in a fortnight anyway).  I haven't followed up with the kidney specialist yet, but I did find out that her creatinine is up again.  It is now 277.  At the beginning of the year I think it was about 210, in October it was up to 246, and it has jumped again to 277.  It makes me feel sick to my stomach to think this could be the beginning of the road to transplant.  I'm not ready.  Things have been so stable lately, life so predictable.  I'M NOT READY!!

The highlight of the day was that we bumped into Sarah and Violet while we were there.  We really should arrange to meet somewhere more pleasant though!!

Wednesday, December 15, 2010

Preschool Christmas Concert

Yesterday was Ashlea and Audrey's end of year preschool concert. Talk about awesome - BOTH my twins up on the stage, singing the songs and doing the actions.

When Ashlea first saw me from the stage, she started saying "Want a big cuddle Mummy" - her very effective manipulation request for me to pick her up.

Audrey did such a good job with the actions!

This is Ashlea doing the "Oh My Goodness" action.  She's got that one down pat.

And guess who got to 'drive' the fire truck???

Here the girls are receiving their preschool portfolios...

What a great concert, and a great way to end a great year at preschool.  Ashlea has just blossomed through her preschool experience, and the staff have been fantastic with her - particularly her special needs teacher Sue Cook (that's her in all the photos!).

I thought I'd be a lot more emotional at the concert - just the thought of both the girls being up there on the stage was enough to make me teary in the lead up.  On the day though, it was just a delightfully, joyful experience to see them up there.  What a great day - beats Oprah for sure!

Tuesday, December 14, 2010


It's Oprah day today.

I'm not at Oprah.

I'm attending the twins preschool concert instead.

Probably just as well I didn't win tickets in the ballot - I fear I would not have chosen the 'good mother' option of turning them down because my child's preschool concert was more important...

Sunday, December 12, 2010

Don't know how to put this into words???

At church today, the guy who was preaching mentioned that he and his wife had just found out there might be a problem with their unborn baby.  He was talking about how in our weakness we can trust God (it being church and all).  Something he said struck me, as it is something I myself said only days before being diagnosed with TTTS.  He said that there was no guarantee God would give them a healthy baby.

Very true.  There are no guarantees about anything in this life - although as Christians God does guarantee to be with us through every situation.  I myself said those words early on in the TTTS journey.  At the time I said them with much trepidation.

I think now that I've been on this journey for awhile, I would add something to that statement.  Now I would say:   There is no guarantee that God will give me a healthy baby - and that is OK.

I don't even know what I mean by that exactly - it is just something I feel very strongly about!  I don't mean that I think it is OK that Ashlea is disabled - because in some ways I will never be OK with that, but in other ways I accept her 100% as she is.  I love her AS SHE IS.  I am OK about this journey we are on.  I'm not angry or bitter or resentful.  There are actually lots of great things I have discovered along this journey.  I have learnt about what is really important in life.  I have learnt about unconditional love.  I have met some amazing children and their parents.  I have learnt that quality of life is different to what I thought it was.  I have learnt about what it means to focus on the unseen rather than the seen.

Am I alone in feeling this way???  I am really curious to know how other parents feel about this.  Do you think good things have come from your experience?  Do the good things outweigh the bad?  Or is the bad so bad that no amount of good can make up for it?

I suspected that the parents-to-be weren't ready to hear any of this, but I did make a point of talking to them after church, as I feel like what is the point going through something like this if you can't help someone else?

Wednesday, December 8, 2010

Special Exposure Wednesday: Santa! Present!!

Yesterday we attended the RIDBC Christmas party.  The kids had a great time.

They have a great site, and always put out lots of activities for the children.

This year's entertainment was a reptile show.  I was surprised at how willing Emma and Audrey were to touch the snakes...

I didn't think Ashlea would be that into it - but that was until I realised they had a TURTLE with them.  Ashlea LOVES toy turtles - so she was pretty keen to pat a real live one.

I pat a turtle she told Murray that night.

And of course there was Santa.

I sit on Santa lap she told Murray.

Before we went to the party I asked her some questions to see how much she understood.

Where are we going today?


Who will be there?


What will Santa give you?


Oh yeah - she understands how Christmas parties work!!!

For more Special Exposure Wednesday click here.

Oh and for the concerned citizen who was worried I might actually chuck a sickie, this day was made possible by my family-friendly, employer-approved (in advance) leave.

Saturday, December 4, 2010

It feels weird...

It feels weird for it to be nearly Christmas, and for us not to be attending any Special Needs Christmas parties.  Usually we go to the Royal Institute for Deaf and Blind Children's party and the Spastic Centre's party.  This year the girls will be at preschool for the RIDBC party, and horror of horrors the Spastic Centre aren't having a party this year.  The kids are not happy - TSC party is the one with the chocolate fountain - of which they are huge fans.

Somehow it doesn't seem Christmassy without all the extra parties. I'm half tempted to chuck a sickie and take the kids to the RIDBC party after all.  We need us some Santa.  Maybe Emma could even skip school?  Its not like they're doing any work at the moment anyway - they've already received their reports and are just doing craft and watching movies whiling away the days until school finishes for the year (that's 8 days for anyone else who is counting).

So, what do you all think?  Chuck a sickie?  Yes?

Wednesday, December 1, 2010

Special Exposure Wednesday: O Christmas Tree

We put the Christmas tree up on the weekend - it was such great fun. I love putting up the tree and can remember it being so exciting when I was little.  The girls were all very excited and Ashlea was even able to overcome her fear of spikey-textured-things and get into it.


Even though it looks like Ashlea was being really helpful and putting ornaments on the tree, she was actually only interested in pulling them off.

Don't touch she says.

Don't pull off she says.

All the while she is of course pulling the ornaments off the tree.

It is lovely to see her have more of an understanding of and enjoyment of Christmas this year.

At bedtime Ashlea has a habit of trying to put off the inevitable by asking to say good night to everyone she can think of.

Want to say g'night to Daddy.  Want to say g'night to Audrey.

Last night it was Want to say g'night Christmas Tree.

Click here for more Special Exposure Wednesday.

Friday, November 26, 2010

The Its-Not-Thanksgiving Giving-Of-Thanks post

At this time of the year a lot of my American blogging friends are posting about all the things they have to be thankful for.  Last year I decided to do this too, even though I feel very strongly about Australians NOT adopting American holidays (what is with Aussies celebrating Halloween?  Seriously??).

I have much to be thankful for, not least of which is the fact that this morning I realised before leaving the house that I was wearing my shirt inside out.  Unlike last time.  Of course I am thankful for my children, for my family, for chocolate, for friends, for sleep - the list goes on.  I really like the idea though of stopping to look back over the year and take stock of how far we have come.

This year Ashlea has:
  • learnt to sit on her bottom for short periods of time
  • learnt to pull up to stand against the couch / TV / chairs / people's legs
  • learnt to get back down again!
  • learnt to walk short distances with a kaye walker (!!!)
  • learnt to stand up into the kaye walker by herself
  • not had a hospital admission (I know I'm taking a risk by saying that out loud)
  • enjoyed a whole heap of new experiences at preschool
  • participated in not one, but TWO concerts
  • learnt to talk up a storm 
Wow.  What a list.  She is just blossoming.  Her awareness, understanding of, and participation in the world has grown so much. This afternoon when I picked her up from preschool she told me:
I drawed a chismas tree
How delightful.   She knows what a Christmas tree is.  She knows she drew one at preschool.  She wanted to tell me about it.

I have definitely got a lot to be thankful for.

Wednesday, November 24, 2010

Special Exposure Wednesday: Good Standing

It was only a few months ago that Ashlea first learnt to pull herself up to stand.  She has since been practising her new trick, and is now confident enough to start using her new skill for evil rather than for good.

Is standing too close to the TV a developmental milestone??? Maybe not, but it is definitely 'normal' - well in our house anyway - and that is cause for celebration.

Unfortunately learning to get down again has taken a lot longer than learning to get up.  Until recently Ashlea used the very effective:

                   Mummy, I need to get down

This would be repeated again and again and the volume and pitch would escalate as her grip on the TV cabinet loosened.  Over the past weekend we think we have taught her how to get down by herself. Now that is a milestone for me to appreciate. There are only so many times an hour you can be called to help someone down from the TV ledge without going a little nuts!

For more Special Exposure Wednesday click here.

Sunday, November 21, 2010

Here is the video

This is the video I showed Ashlea's doctor yesterday.  I was right - the doctor was genuinely delighted to see Ashlea doing well, and she promised she would pass on the news to Ashlea's neonatologist (who was a real worrier!!).

Friday, November 19, 2010

How much would you pay?

How much would you pay for the opportunity to show the doomsayers that they were wrong about your child?

Well, wrong-ish anyway.

I am going to pay $65 for this privilege. I think that's a pretty good price, don't you???

Initially when Ashlea was diagnosed as having cerebral palsy, she was assessed as Level 5 - the most severe classification.  Ashlea still obviously does have severe disabilities, but seeing as she is at least a level 4, trending towards 3, I think that I'm entitled to a little moment of 'in your face, you were wrong' smugness.
This Saturday I am attending a fundraiser for RPA Newborn Care - the NICU that Ashlea and Audrey spent many months in. At the fundraiser one of the doctors will be giving a little talk about the nursery, their need for funds, that sort of thing.

You can see where this is going can't you???

Yes, it so happens that the doctor who is speaking is the one who gave Ashlea her Cerebral Palsy diagnosis - specifically she assessed her as being a GMFCS 5.

I am paying my $65 to attend this event, partly because I know it is for a good cause, but mostly so I can show her my video clip of Ashlea walking with her kaye walker, and show her that her initial predictions for Ashlea were incorrect.

Now, in spite of how it sounds, I am not doing this to "show her she was wrong" because I have a chip on my shoulder about the diagnosis. I am doing it partly to show her she was wrong, but also because I believe she will be genuinely pleased to see how well Ashlea is doing. This doctor was in the nursery for many of Ashlea's dramas so I can't wait to show her how well Ashlea is doing now.

It's a tough one, because some doctors would still look at Ashlea and only be able to see what she can't do, but I do hope (and believe I'm right on this one) that the doctors who saw how sick she was, how she nearly didn't make it, and how slow she was to make any positive steps developmentally, will be genuinely happy to see her progress. They of all people can appreciate how far Ashlea has come and what she has achieved.

I can't wait!

Wednesday, November 17, 2010

I want to eat custard!

Ashlea has been practising eating custard. A photo wasn't enough to capture the experience, so I made this little video...

Forgot to add, for more great Special Exposure Wednesday pics click here.

Sunday, November 14, 2010

Kidney Kidnections

This weekend, our photographer friends Tim and May came and took some more photos of Miss Ashlea.  Our friend Simone is putting together a book called Kidney Kidnections, that will contain lots of stories of children living with renal disease.  Tim and May came and took some photos of Ashlea for her story in the book.

Click here for the link to the photos.

Seriously... how good are those pictures???  I am totally jealous of how easy they made it look to get a great photo of Ashlea, and now I have a huge dilemma.  Which photo(s) do I choose for the book? Please leave your suggestions as I am having a hard time choosing!

Here is the original draft of Ashlea's story for the book:

Ashlea's Kidneys – Robbed of Blood

Ashlea's kidney story starts well before birth. When I was just 7 weeks pregnant an ultrasound revealed that I was having identical twins. Specifically, mono-chorionic twins. At the time I had no idea what that meant or how that term would forever change the course of our lives.

As the pregnancy progressed, one twin was always slightly smaller than the other, until at 22 weeks we discovered our babies had severe twin-twin-transfusion syndrome. This is where one of the twins (Ashlea – our smaller baby) gave her blood to her twin, leaving her deprived of blood and therefore oxygen and nutrients. Her sister Audrey was left close to heart failure. This ongoing transfusion meant that Ashlea had no blood flow through her kidneys, or urine in her bladder for the remainder of the pregnancy.

Ashlea and her sister Audrey were born at 27 weeks 4 days gestation. Ashlea weighed a tiny 570gm due to the severity of her conditions in the womb. Not long after birth her condition deteriorated rapidly. By the 4th day of her life she was in complete renal failure and suffering complications such as high potassium levels combined with low blood sugar. That was the first time we were told that she may not make it through the night. It was not the last.

As her first week progressed so did Ashlea's renal failure. She should have been passing 2 -3 ml of urine per hour, instead she was passing only 2 – 3 ml in a day. She swelled up with fluid, and was unable to be fed, and remained on full life support. Her creatinine (measure of kidney function) peaked at 495 and her urea at 20 – numbers that would easily put an adult on dialysis, but because of her prematurity this was not an option available to us. We had to wait and hope and pray.

Would her kidneys start working? Would she live? At that stage her survival was an hour by hour thing. At no stage did it occur to us that if she did survive she could be left with ongoing kidney problems. We thought that if she survived, she would recover completely. Either she would live and recover, or she would not survive.

We were wrong.

By the end of her first week of life Ashlea's kidney situation was dire. She was in complete kidney failure. She hadn't passed any urine in the 24 hours that was day 7. She was on life support and requiring a lot of breathing support and other medications. Finally on the morning of day 8 she did a big wee (5 whole mls). We were elated. Her kidneys were beginning to work. She was going to live. Everything would be OK, or so we thought.

It took many weeks for her to slowly pass all the fluid she had accumulated during that first week, and her creatinine levels started coming down ever so slowly. Unbeknownst to us, they never even approached normal levels, but we still believed that eventually they would get there.

At 10 weeks of age Ashlea had another major setback requiring her to be put back on full life support. Again her life hung in the balance. It was at this point that we realised her kidney failure was going to be an ongoing issue. A kidney specialist from the Children's Hospital at Westmead was consulted and she gave us her initial prognosis: Ashlea would need a kidney transplant sometime between the ages of 2 and 4. If she did really well it may not be needed until around the ages of 6 – 8.

Ashlea is now 4 years old and so far has not needed a transplant. Her creatinine levels have slowly been rising over the last 4 years, but they are rising slowly and she has been quite stable kidney wise. We have discovered some other illnesses and disabilities in the intervening years – all related to the twin-twin transfusion and resulting early birth. Ashlea has cerebral palsy, a developmental delay and is legally blind as well as having chronic renal failure. In spite of these difficulties she is making amazing progress and brings such joy to our family.

We are still unsure exactly when Ashlea will need her transplant. Her dad and I are both matches based on blood type, however Murray's family have a strong history of diabetes so it will more than likely be me who donates a kidney. Again it is a matter of waiting and watching, and hoping to put it off for as long as possible.

In terms of day to day looking after a child with kidney failure, renal failure doesn't add too much of a burden to our lives at the moment. There are a couple of medications we give daily and tube feeds to be prepared, but hospital visits are minimal. We see the kidney specialist for a blood test and check up every 3 months, and tweak her feeds and medications as needed. Otherwise we stay away from the hospital as much as possible!! Ironically, Ashlea has developed a condition called diabetes insipidus which means she is unable to make her urine concentrated, so we have gone from her initial days where she wasn't passing any urine at all, to now passing buckets and buckets each day.

People often say to us “I don't know how you do it” or “I could never cope with that”, but the truth is if they were in our situation they could do it and they would cope with it. We love Ashlea. In our situation the alternative to looking after a child with these disabilities, would have been to bury a child. I know which I choose. Having a child with kidney failure and other disabilities makes you realise what is important in life. It doesn't matter how smart you are, or how rich or successful you are. What matters is that you love, and are loved. Ashlea might not have the same quality of life as her twin, but she loves. And she is loved. What else is there? Before having Ashlea I could never have imagined coping in a situation like this, now I can't imagine my life without her.

Friday, November 12, 2010

But wait, there's more...

After posting on Wednesday about Ashlea's great start to the week, she topped it off with an awesome day at preschool today.

Today the firemen came to visit.

As usual I thought she would flip out completely.  As usual she surprised me.

All the kids had a turn squirting the fire hose...

Audrey loved it.

Ashlea maybe not so much...

The children all got to have a turn sitting in the fire truck too.  Both my girls had a turn.  I wasn't sure how Ashlea coped with that, but I asked her if she was laughing or crying in the fire truck and she said laughing, so hopefully that is the case.  It sounds like the firemen were really good with her - one even gave her a little cuddle when he got her down from the truck.

I don't think the firemen usually get the ladder off the truck for the children to play with, but seeing as they had a special request from one particular child who is obsessed with ladders they obliged...

How good is that???

I have to say a huge thank you as usual to our preschool and particularly to Ashlea's teacher Sue Cook who always goes above and beyond when it comes to including Ashlea in all activities at preschool.  And a big thank you to the fire crew from Northmead station - hopefully we'll see you again at preschool next year.

Wednesday, November 10, 2010

Happy Days!!

Ashlea has had a great couple of days to start this week.  It's a fine line I know, but that's a happy-screaming-face in that photo, rather than a cranky-screaming-face.

Yesterday Ashlea and Audrey had the preschool bus wash excursion.  I thought Ashlea would freak out on the bus - especially when they went through the bus wash, but no, she was fine.  In fact she was more than fine - she loved it - even when they were inside the bus wash.  Who would have thought???  For those who are wondering about what we ended up doing about her seating on the bus, she went in her wheelchair and was strapped into the wheelchair spot on the bus.  As an aside, why do the wheelchair spots face backwards?  Is it so the entire bus can watch the poor person in the wheelchair throw up when they get motion sick?  Who designed that?

But I digress...

The other good news is that the party at the play centre also went really well.  It was really quiet there as the party was on Monday so I was easily able to take Ashlea on anything she wanted to go on (well, on what my fear of heights and enclosed spaces will allow anyway...). She loved the tunnels, the jumping castle and the slippery dip.  The big news however is that she stayed in the party room  for the entire time that the kids were eating and playing games.  Loud games. She did have her hands over her ears for quite a bit of the time, but she wasn't screaming, so I just left her in there.  I was really impressed.  She didn't even lose it when they sang Happy Birthday (for some reason that is often the last straw for her).

Here is the proof that we had fun - and a rare photo of me...

For the rest of Special Exposure Wednesday click here.

Sunday, November 7, 2010

Update from Busy-land

Life is well, busy, here in busy-land, but aside from a raging case of PMT (mine) things aren't too bad.

Emma is doing well at school, the girls are loving preschool, and Murray and I are surviving the new routine.

On Friday Audrey came to work with me as I was unable to get a preschool day for her.  Well, that's not entirely true.  I didn't think I'd be able to get a day for her so I opened my big mouth and told her she might have to come to work with me.  When a day did become available, there was no way she was going to preschool.  Her teacher tried to talk her into it all day Thursday, but Audrey's response was a very firm "No, I'm going to work with Mummy".  So, she came.  She was very good - she is by far the 'easiest' of my children.  We even managed to find her a donut the size of her head at the canteen.

What else happened this week?

I started my Christmas shopping.  After having a nightmare that it was 6pm on Christmas Eve and I hadn't bought anything for Christmas, I was keen to get started.  When I told Emma that I had a dream that I forgot to buy presents, she told me "That's OK, because we would still get presents from Santa".  Yep, that's why I woke up in a cold sweat.

I need advice though.  I have no idea what to get Ashlea this year.  She already owns every single Night Garden toy ever made.  I could buy some software for her to use with the intellikeys - but that isn't really fun.  She is aware enough of presents now that she will see the others playing with fun stuff and want some for herself.  So if anyone has any good gift ideas for special needs children please let me know.

What else?

Oh yeah, I dobbed someone in for parking in the disabled spot at preschool.  It wasn't another parent who was just running in with their kid, it was someone who parked there early in the morning - without a permit and when the whole street was empty and available to park in - but no, they parked in the one disabled spot outside preschool.  I really hope the ranger got there in time to slap a $400+ fine on their car.  Gee it felt good to dob them in.

Oh and the big news is that I entered the ballot to get tickets for the Oprah show.  I really, really, really want to get tickets.  It would clash with the twins preschool concert though.  Would that make me a bad mummy???  It is most likely an irrelevant question as the chances of getting tickets are pretty low I'd imagine.  I'll let you know!!

Coming up this week:  a party at an indoor play centre (ugh) and the preschool bus wash tour.  I'll let you know how it goes.

And to finish with here is an Ashlea-ism from preschool this week.  It was teddy bear week, and Ashlea was colouring in a teddy bear picture with her teacher.  There were 3 teddies. Ashlea painstakingly attempted to colour the first one.  Again she painstakingly tried to colour the second one.  Finally Mrs Cook asked her what colour she wanted the 3rd teddy to be.  Clearly fed up with colouring, Ashlea's answer ....  WHITE.

Tuesday, November 2, 2010

A Family Portrait (Attempted)...

The other day when I was taking photos of the girls, I tried to get one of them all together.  Why I persist in trying this I don't know, because it always goes pear shaped.

This is the best shot I got...

It didn't take long for things to start getting a little untidy...

Not long after that the craziness set in...

And then the sibling strangulation...

How do family photos turn out at your house?  If you've got some good ones I need to know how you do it!!

Edited to add the link for Special Exposure Wednesday.

Friday, October 29, 2010

Further mortification

I am at work right now.  It is 1:45pm.  I have been here since 7am.  I have only just noticed - this very minute - that I have been wearing my shirt INSIDE OUT.

What was that I was saying about disorganisation???

Surviving work

I am surviving my extra hours at work.  My Tuesday / Friday role is very different to my Wednesday job, and much busier.  Who knew that anyone at my work was ever that productive?

Overall I am finding it very tiring.  Not just the hours that I am at work, but also the stress of remembering everything that needs to be done.  Lunches to pack, clothes to lay out, medications to draw up, library on Thursday, news on Monday, don't forget the hats.... I'm sure you all know what its like.

Murray is doing really well with getting the girls ready in the morning. We have started using Skype so I can have a quick chat to them and see them before they go to school and preschool which makes a huge difference to my day.  I need to SEE them, and see that they are OK otherwise I worry about them all day long (usually I leave before they get up which would mean not seeing them until after school).

Anyway, the summary to this waffle is that I / we are surviving me working more.  Everything that needs doing is getting done, just in a slightly more dishevelled fashion than normal.

The following things may or may not have happened in the last week.  If DOCS are asking, they definitely did not happen.

Audrey may have been wearing her pants backwards at preschool this week.

Emma may have gone to school one day with her shirt buttoned incorrectly, her collar tucked inside her shirt AND both legs stuck in the same leg hole of her cullottes.

Ashlea may have crawled down the front stairs, out the gate and half way down the driveway towards the road after the children I left the front door open.

Audrey may have stripped off all her clothes after swimming and then done a nudey lap of the entire swimming centre while yelling out 'I need to do a wee', as her teacher and I yelled from the pool for her to come back.

So, you know, life as normal really.  Just with less organisation.

Wednesday, October 27, 2010

Water Play

I wasn't sure I would have any photos for this week as I have been too busy to get my camera out, but yesterday afternoon was lovely and warm so we ignored the homework and the housework and got out our water play table and filled it up.

Ashlea - why don't you try putting your hand in the water...

Do you like it?

Maybe not.

But we had fun, and I got this lovely photo of Ashlea and Audrey together.