Friday, April 30, 2010

Good-bye Summer

We have had such a lovely long summer, but this week seems to have marked the beginning of the colder weather.  Just as well we got in a trip to the beach last weekend while it was still warm.

We thought it was about time we took the kids for their first trip to the beach, seeing as Emma is going to be a surfer when she grows up.  So off we went to Balmoral, surf capital of Australia (NOT for those not from Sydney).

It was a gorgeous day.


We checked out the waves...


Got our feet wet...


Exposed our arses to the world...oh wait, that was just Audrey...



Buried each other in the sand in a nice demonstration of sisterly love...


Miss Ashlea was there too.  She strolled the promenade with Grandy, and then decided to be brave and try the sand.  Whereas a year ago she would have screamed blue murder, this time she tolerated it for awhile and then announced (loudly and repeatedly) "I NEED TO GET OUT!!"



From the beach on Monday, to Ugg boots and a hot water bottle on Friday.  Good bye summer.

Wednesday, April 28, 2010

New Wheels!!!

We prayed long and hard for its arrival...


We heard rumours it was getting closer but we tried not to get our hopes up too high...


Oh please God let it be true...



Praise the Lord its arrived...


I still can't believe it - even though I'm actually sitting in it!!


I can still push myself around...



And it has this seat belt thingy to stop me from falling out...


No matter how hard I try...


I think I LIKE IT!!!


 
Edited to add: Don't forget to check out all the other Special Exposure Wednesday pics here.

Sunday, April 25, 2010

Anzac Day

Anzac Day is a very special day to me, as my Grandpa WAS an Anzac and fought in the Great War.  He was at Gallipoli (but not for the original landing), and then fought at many of the great battles on the Western Front - Fromelles, Villers-Bretonneux, Hamel - he even saw the Red Baron get shot down.  At the age of 101 he and the remaining survivors of these battles were awarded the Legion of Honour (highest French honour) by the French Government

In the second world war, my Grandpa's younger brother was imprisoned on the infamous Burma railway, and my Grandpa's eldest child, his son, was killed in New Guinea.

Even though those events are now so long ago, for me they seem much closer.  I was very close to my Grandfather and miss him a lot.  He died in 1998 - 2 weeks short of his 102nd birthday.  I would have loved it if he could have met my kids (mind you I don't think he would have relished living to 108!!)

They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn
At the going down of the sun and in the morning
We will remember them.
It is amazing what you can find on the web.  I found this article mentioning my Grandpa, and this video of him talking about his memory of his first days at Gallipoli.

Lest We Forget.

The big Inclusive Birthday Bash

Yesterday was the twin's 'big inclusive birthday party'. I think I can say that overall it went well. Audrey had a great time. Ashlea mostly had a great time.

Aunty Carolin was on 'inclusion duty' for this party (usually she gets food and musical chairs), so it was her job to help Ashlea participate in as many party activities as possible.

The party started (as most do) with ripping open presents as guests arrived. Both girls loved this bit, but Ashlea seemed to love it the most. Audrey declared that she was tired of opening presents after awhile and that she just wanted to go and eat cheezels. Ashlea however was right into the presents and kept saying "Oooh, look at THAT" whenever she opened a new one, and "MY present" if someone tried to take one of hers away.


The present opening was followed by lots of running around in the backyard.




After that we played musical chairs. At this point things started to go a little awry. Carolin tried carrying Ashlea around to play (and was easily beaten by the preschoolers I might add) which worked OK, except that all the noise and activity lead Ashlea to have a meltdown. A BIG screaming meltdown in the middle of the garage with everyone watching. She was begging to be taken inside to watch TV. So at that point inclusion was abandoned for sanity's sake.

We then played pass the parcel while Ashlea watched In the Night Garden.



The kids then ate and went back to playing outside some more, until it was time to cut the cake...which involved going back to the garage (yes I DO make all the party eating happen in the garage...).  We stood Ashlea in her stander beside Audrey and managed to get all the way through Happy Birthday before the screaming began.  In full force.  In front of everyone.





I think we can say the party was a success.  Audrey had a great day at her party and seemed to love every minute of it.  Ashlea was never going to cope with the whole thing, but we included her as much as possible.  The other parents were incredibly helpful and a lot had gone out of their way to find gifts that they thought Ashlea would be interested in or able to manage.  I think for a lot of them it was their first experience up close and personal with Ashlea (or any child with a disability probably).  Heck there was even one mum there whose child only goes on a Thursday (Audrey's day, not Ashlea's) so neither of them would have never even met Ashlea before!!

And just in case you are wondering about the cake...it is ANTARCTICA.  Its just a little geographically challenged - the polar bear was added because he was cute, and Ashlea loves turtles so we added a turtle as well.  Here is a close up....'cos I know you're just dying for one...


Friday, April 23, 2010

Party Preparation Day

I think I have already mentioned that the twins are having their birthday party tomorrow. Did I also mention that I invited half the preschool kids??? We will be having 16 screaming girls in our house...and maybe one screaming mum.

Today was party preparation day. It went something like this:
  • get woken up at 3am by a 6yo insisting that you need to flush the toilet for her (what is with that??);
  • get woken up at 4:45am by the raucos singing of one 4 year old (Ashlea in bed singing enthusiastically);
  • get up at 6am to get 3 kids dressed, and to get myself and the twins to the hospital by 8:30am for a botox follow up (all is well in that department - she has had a great response)
  • take Ashlea to preschool;
  • come home and run around like a chook with its head cut off (that one is for you Jenny F) and tidy, wash, bake, etc for the party;
  • on the way to preschool pickup discover that the car's radiator is cactus (3rd time in 18 months...what is with THAT?);
  • start shrieking at everyone - at husband about where the F is the other car parked as I need to come and swap cars, and at the kids for just about everything;
  • pick up Emma at 3pm (in Baulkham Hills), swap dud car for good (in Parramatta) at 3:30 and still make it to the Spastic Centre (in Ryde) ON TIME for our 4pm appointment;
  • while driving to our appointment answer 6 year old's question about where babies come out. Did you catch that...not where do they come from, or how do they get in there...where they come OUT. I don't know if I gave a good or a bad answer but her next question was "Does it hurt??";
  • PICK UP ASHLEA'S BRAND NEW WHEELCHAIR!!!!
  • pick up husband and dinner on the way home while dealing with an Ashlea screaming meltdown;
  • send 6 year old to bed early for screaming meltdown;
  • have cup of tea and blog instead of having own screaming meltdown.

Next to do... ice the cake.

I promise to have wheelchair AND cake photos tomorrow!!

Wednesday, April 21, 2010

My Big Birthday Girls

Can you believe my babies turn 4 today??? How far they have come!!

Here is a trip down memory lane...

Monday, April 19, 2010

Alison's Parenting Wisdom - Tip #1

I thought it was about time I started sharing some of my vast realms of wisdom with you - wisdom that I have acquired through the experiences of my life. So here it is - the first (of many?) pearls of wisdom....

Tip #1

ALWAYS make sure you put your child's wheelchair back in the car after the weekend, lest you end up somewhere - swimming for examnple - with a heavy child and no wheelchair or pram.

I'm just sayin' that's all...

Anyone else got any tips born through the wisdom of experience?

Sunday, April 18, 2010

Park Etiquette

On Friday the girls and I visited a great 'all abilities' park - Livvi's Place at Timbrell Park in Five Dock. It is completely accessible and the kids all had a great time (yes, even Ashlea).

At first I was a little disapointed that there wasn't a wheelchair swing, but after talking to my friend (and blog reader) who was on the planning committee she explained the reason they didn't include one is because it kind of segregates the kids in wheelchairs.  Fair point.  The whole point of the park is that children of 'all abilities' can play side by side. They have certainly achieved that aim - the park  has lots of 'regular' park eqipment, as well as some things designed specifically for children with special needs.

As well as all the regular swings, slippery dips, climbing equipment, and spinning things there is a sand pit, a birds nest swing that an adult and a child with a disability could go on together, a round-a-bout with standing room, chairs and wheelchair spots, a ramp that has a slide off it, a set of musical chimes...I can't think what else - click here for a fly around view of the park to see what I've forgotten!  My girls all had a great time and we will definitely be going back!

Now however, two issues have come up for me from this park visit.

The first is this...how did my friend get her role in planning the park?  And how can I help plan a park like that in my council area???

The second is more an issue of park etiquette.  Or general etiquette really.

While we were at the park, we were the only 'all abilities' family there, and I was surprised by the number of children staring at us.  REALLY staring at us.  And asking questions.  Not the come up and make conversation type of questions either - the random called out type of questions as you walk past!  I have gotten used to avoiding the questions of adults - not by not answering them, rather by not giving them a chance to ask them!  But children don't pick up on those vibes, so they ask.

Why is she in the wheelchair?
Has she got something wrong with her legs?
And my personal favourite What happened to her??? 

So, I would like to know what answers you give in those situations.  I need a quick blurb to answer children's questions.  I'm afraid I didn't answer well on Friday.  To the ones who asked "Why is she in the wheelchair?" I said "Why do you think?"  I tried to not make it sound as shrill as it just did when I typed it...I just tried to get them to come up with the answer for themselves.

To the boy who asked "What happened to her?"  I answered "Nothing".

I regret it now, as it was a missed opportunity to talk about disability and inclusion and understanding, but I was on my way out of the park and just didn't feel like having a big discussion.  How do you answer that question anyway???

So...a short, but positive statement is what I need.  I don't want to say "She is in the chair because she can't walk", I"d rather say "The chair helps her to get around".  Something that focuses on the positive not the negaitve.

How do you answer the curious questions of staring children?  What is your 'quick blurb'?

Friday, April 16, 2010

Kidney Review

This week Ashlea had her 3 monthly kidney check up and the good news is that all is STABLE. We also had a fantastic blood collector who had the test over in less than 5 minutes - her name is Christina - I am remembering that for next time!

Her test results are pretty similar to last time:
Creatinine: 220 (normal is around 60 for a child)
Urea: 8.6 (normal is <6.5)
Sodium: 143 (normal 135-145)
Hb: 137 (normal >100)

While we were there I took the opportunity to ask the specialist the 'big' question. For those who haven't been following, the 'big' question is:

"What do you estimate Ashlea's life expectancy to be?"

While the doctor can't obviously see into the future and answer specifically for Ashlea, she said that children born with renal failure often live to their 30's or 40's, depending on a number of factors: 
If you have a transplant you are less likely to die than if you remain on dialysis - a transplant patient is 10x likelier to die than a person without kidney failure, a dialysis patient is 40x likelier;
If a child has a transplant that lasts much longer than usual (not unheard of) then they can do very well for a long period of time.  The problems arise when the transplant fails (which most do eventually) and they need to be either re-transplanted or dialysed. I think around 10 years is average for the life of a transplanted kidney although some last much longer - and some much less.  
Obviously all us kidney mums expect our kid's transplants to last for at least 20 years...if not longer.

So, it would seem that the answer to the unanswerable question is.... 42? Well, not quite (sorry don't know how many people will get that reference).  Seriously though, if 30 to 40 is a realistic life expectancy for Ashlea, I am pretty happy with that. It is a lot more than we ever thought we'd get.

And as much as the thought of your child dying before you is awful, in some ways it also provides a measure of comfort.  Ashlea would be lost without Murray and I - our family is her whole world.  At least if she were to go first, we could understand what had happened, we could know she was at peace, and we could look forward to our reunion in heaven.  Ashlea may not have that ability.  I would rather that I experienced the grief of losing her, not the other way around.

Wednesday, April 14, 2010

Special Exposure Wednesday: A Spot of Fun!


Last week the girls and I went to see Spot (Ashlea is a big fan) at our local shopping centre.  I think it is the first time Ashlea has met a big furry character and not completely freaked out.





We went back to the same shopping centre yesterday, whereupon Ashlea said to me:

'I wan' see 'pot Mummy....PEEEAAAASE'
[translation: I want to see Spot Mummy.  PLEASE.]

So clever - she remembered that the last time we had been there it was to see Spot.  When I said no, she started coming up with other requests.

'Mummy, I wan see a fish...PEEEAAASE'
[translation - I want to see the fish.  PLEASE.]

She has just learnt to say 'please' and is using it to great effect.  Every request gets a very impassioned PEEEAAASE after it.

As in:
 'Mummy, I NEED to give a cuddle.   PEEEAAASE'. 
 or   'Watch Night Garde...PEEEEAAASE' 
or 'I wan' a go home.  PEEAASE'

We are thrilled with all this lovely language and these beautiful sentences.  We have also had:

'I NEED a 'nana bread'
[this one was said the minute I got her out of the car at the shops]
Then as soon as the girls and I sat down to eat the banana bread she says:
'I need go toilet'. 
Too funny - she isn't toilet trained but she knows from listening to her big sisters that as SOON as you get to the shops you start asking for banana bread, and then in spite of assuring your mother that you don't need to go to the toilet, as SOON as you sit down to eat the banana bread (and Mummy drink her cup of tea) you ask to go to the toilet.

Another one she learnt off her sisters:

'I did a pop pop' ...  followed by much giggling.
They have taught her well.

Don't forget to check out all the other Special Exposure Wednesday photos here.

Monday, April 12, 2010

Grey Clouds

 
At the moment I feel like there are a whole bunch of grey clouds gathering over my head.

Usually, 99% of the time, I am convinced that all of the good things that Ashlea brings to our lives far outweigh the difficulties of caring for her.  Things like knowing how to appreciate the little things - a smile, a laugh, a new word - "I NEED a Night Garder Mummy!!".  Things like knowing what is and isn't important in life.  Things like loving and being loved unconditionally.

But sometimes, just sometimes, the burden of being a 'carer' seems very great.  Being a carer is relentless - there is no respite (unless you get official respite) from the routines of caring.  Every day there are medications to be given, nappies to be changed, feeds to make up, therapies to do - or not do and then feel guilty about.

At the moment the burden of caring feels heavy.  I am Ashlea's carer.  Her FULL-ON carer.  I'm going to be her full-on carer for the next 20 years or so.  And then what?  I get to bury my child?

Sometimes it feels like a heavy burden.


Thankfully today in real life the sun is shining and it is still school holidays.  Hopefully we can get out and do something fun so I can be reminded again of all the great things in my life.


And maybe for good measure I'll throw in a little retail therapy as well...

Friday, April 9, 2010

Appointments Galore

Aaahhhh, school holidays.  A chance to sleep in.  A chance to rest.  A chance to ...  catch up on appointments.

So far this week we have had paediatrician, physio and psych appointments.  Next week we have kidneys.

Ashlea's physio appointment was good - she has had a good response to the botox, and her (assisted) standing has improved heaps - being able to get your heels on the ground obviously makes a big difference!

Ashlea met the psychologist at the Spastic Centre today.  We met with her to discuss some developmental testing we would like Ashlea to have in preparation for choosing a school.  We didn't expect to get seen so soon as I'd heard there was an 18 month wait for psych services so we put in our referral early!  At this stage we will just do a developmental assessment as Ashlea is too young for a full cognitive assessment.


On Wednesday I took all the girls to see the paediatrician for their general check ups.

Emma and Audrey had their height and weight checked.  It was a relief to see that according to the growth chart Emma is actually growing - just slowly!  She is growing along the 1st centile - Audrey is on the 50th centile and has nearly caught up to Emma in both height and weight.

Ashlea will get weighed and measured (and have bloods - ugh) at Renal clinic next week so we just had a general catch up with the paediatrician.  We checked her PEG, chatted about her general progress, nothing out of the ordinary.

Until.

I asked the unanswerable question.

What does the paediatrician estimate Ashlea's life expectancy to be?

The doctor explained that basically the thing that would be most likely to shorten Ashlea's life span would be crappy lungs - and seeing as her lungs are pretty good this was good news.  Also Ashlea doesn't have ongoing risk factors for lung problems - she can swallow, has good-ish posture, doesn't aspirate feeds, doesn't have seizures which can cause aspiration etc.  Apparently children with really bad lungs sometimes only live to their teens or early twenties.  So the paediatrician thought Ashlea would at least live to her twenties.  Beyond that she couldn't comment - only because she personally hasn't seen older children / adults progress that far.  Maybe once she has had a further 20 years in medicine she personally will have seen ex-prems with multiple medical issues grow through to their 30s and 40s.

The other thing we talked about is Ashlea's general good health at the moment.  The paed said that if Ashlea were to become critically ill at the moment (eg and end up in ICU on a ventilator) - she would expect her to recover just like any other child.  The only 'what if' would be whether her kidneys could handle it - but they could be supported while she was sick if necessary.

I would prefer to have heard Ashlea's estimated lifespan to be 30's or 40's from the doctor, but I don't for one minute think that she has all the answers!  I will also be querying the kidney team and the rehab team - not because I think they have crystal balls, but because statistically I would like to know what sort of ball park to expect.
What is the life expectancy of someone with Ashlea's level of CP?
What is the life expectancy of a child born with renal failure?
 Surely someone keeps statistics about these things???

Anyway, it was a helpful discussion - even if just because it was good to hear the doctor say how well Ashlea is at the moment and how she would expect her to respond to a serious infection like any other child (I'm sure this would NOT have been her opinion when we first met 3 1/2 years ago).

I'm sorry if this topic is distressing for anyone reading it...especially other parents whose children might have the complications mentioned above.  I just feel the need to know what to expect for my child.  In some ways it is a ridiculous discussion to have - none of us has control over these things - only God knows the number of our days.  And I don't quite know why I now have to KNOW EVERYTHING all of a sudden.  After nearly 4 years of not wanting to know I have now gone in the complete opposite direction!

Maybe it is just starting to sink in that this is for real?  Or maybe up until now I have been so worried that she might die imminently that I didn't really think about the future?  Who knows why, it doesn't really matter why I want to know.  I just do.

Stay tuned for the kidney specialist's answer next week...

Wednesday, April 7, 2010

Tuesday, April 6, 2010

What do you wish your child's therapists knew?

If there was one thing you wish your child's therapists knew, what would it be?

That your child hates them but you don't have the heart to tell them?

That you have no intention of doing the homework they have prescribed you?

That you think what they are doing is a waste of time?

For me, there is one thing that I think Ashlea's therapists forget, and it actually has nothing to do with Ashlea herself. Sometimes, I think, the therapists forget that we, the parents are grieving. Especially in the early days (and by early days I mean at least the first 3 or 4 years!).

They forget that what for them is a job, for us is our child. Our lives.

Who else has sat through an IEP/IFSP meeting looking calm and serene on the outside, but on the inside your brain is screaming:

NO.

Not my child.

Not like this.


I used to feel like this all the time - especially when we attended the RIDBC. I think because that was the first service we attended, and some of the children there have pretty significant disabilities. I remember we would be there, and all the therapists and parents would be chatting and smiling and acting normally. All I could think was this isn't normal.

Not my Ashlea. Not like this.

As time has gone on, this feeling has diminished, but it still strikes me as odd that grief is the big taboo that no one talks about. Of all the seminars and topics of discussion put on by the centres we attend, none has ever covered the topic of grief.

I often wonder when I see new parents, if they are struggling to hide their tears like I used to.  If they are having those same thoughts I was.

Not my child.
We don't belong here.

How did this happen to us?
I would like Ashlea's therapists to remember from time to time, that as a parent I still grieve for what could have been. I don't know how they would show that they were aware of that - especially as I probably wouldn't outright tell them.  But maybe just a little acknowledgement of what us parents go through.  Just occasionally.

What do you think your child's therapists should know?

Sunday, April 4, 2010

Happy Easter

Christ is Risen.
He is Risen indeed.


We have been having a very quiet Easter weekend.

Murray has spent most of it in bed with Man-Flu.  You can sense my sympathy coming through the computer can't you?

The girls and I have chilled out at home.  On Friday they spent the whole day in their pyjamas - here is a pic of Emma out in the backyard in her pj's at 3 in the afternoon.  There's no law that says pyjama days have to be indoor days is there???



Here is Ashlea having fun in her walker.  Sorry for the super green wall in the background - it is in heaps of her photos.  I think because there is a slow slope down towards it, she gradually slides down that end of the backyard and then stays there.


And here is a photo of Audrey from this afternoon. 


I was using an old 50mm f1.8 lens to take this shot.  I LOVE that lens, except that it is so old I can only use it manually on my camera - which means I have no access to any light metering information at all.  I just have to guesstimate the settings and take the shot and see how it looks.  I really want to buy a digital version of this lens (but I want the 1.4 not the 1.8).  Bron, Ally and any other photographers out there....feel free to weigh in here...should I do it?

Friday, April 2, 2010

The party...unwrapped

Yesterday was Emma's birthday party.  The one that I invited her whole class to.

I am happy to tell you it was a great success.  The weather was fantastic, so I was able to get away with my unstructured party - ie kids arrive, eat junk, run around, eat pizza, run around, eat birthday cake, run around, get a lolly bag and go home.

I wasn't confident earlier in the day - I thought it was all going to go horribly wrong.

My day began at 3am with Audrey howling in her bed "Something's on me, something's on me".  The something that was on her?  Vomit.  Told you I had reason to be concerned.  Fortunately she recovered by early afternoon and was able to enjoy the party - although I forbade her from eating any party food (mean Mummy I know).

The kids all had a great time at the party, Emma had a great time, I had a splitting headache, but that's OK.  The party went well.  Its over now.  Holidays are here and we can rest.

But not before I show you photos of the cake!  For those who have the Womens Weekly kids cake book it is the "Under The Sea" cake - in case you can't tell!!