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.