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.

Friday, October 22, 2010

Preschool Dilemma

As you know, my girls go to a great preschool, and the preschool goes to great lengths to include Ashlea in all their activities.  For example today "Mr Drummerman" is coming to visit.  He is bringing drums.  Loud ones.  They are confident that Ashlea will be fine and are planning on fully including her in this activity.


I'll let you know how that goes shall I?

There is one activity that is coming up that is worrying me though.  It is an excursion.  They are going to get picked up in a bus, drive to the bus depot (less than 5 minutes away), talk to the bus drivers, drive through the bus wash and then return to preschool.


I asked the teachers if the bus was wheelchair accessible.  Yes it is.  However, they are thinking that rather than taking her in her wheelchair (where she will be sitting up the back of the bus on her own I assume) they are thinking of just taking her 'as is' on the bus.  Mrs Cook will carry her on and sit her on her lap.

What do you think of this???

I think it is great that they just assume that they will take Ashlea and that she will be a part of all activities.  I think however that they are underestimating Miss Ashlea's abilitiy to throw a massive stinking FIT when the bus goes through the bus wash.  I have visions of a screaming, thrashing child wildly throwing herself around with her poor teacher trying to restrain the flailing limbs.

When I suggested to them that Ashlea might have a bit of a meltdown with the noise of the bus wash, they confidently said "She'll be alright".  When I pressed them, they then said "Even if she's not OK, we'll be alright".  I LOVE that attitude, that willingness to include Ashlea at all costs and just deal with the consequences.

But I do worry about the safety aspects of this one.  There will be nowhere for Ashlea to sit safely on the bus.  There are no seatbelts for any of the kids (do overseas buses have seatbelts?).  What if 'something' happens?  I know nothing is likely to happen, but my mind always goes there.

What if 'something bad' happens???

And how much of my reluctance is based on real concerns for her safety, and how much is just plain old anxiety worrying about 'something bad' happening.  I know I can't wrap my kids in cotton wool to protect them from 'bad things happening', but gee I'd like to!

Would you let your child go?  At this stage I am leaning towards just letting them take her on the bus with her on Mrs Cook's lap, but I guess I feel a little uneasy about it.  Which is why I'm asking all of you what you would do.

Any thoughts?

Wednesday, October 20, 2010

I hand

Sunday evening, shortly after dinner. The house is busy with the noise of children playing. Through the noise a small voice is heard.
I stuck.

Her mum, being a bit deaf doesn't respond at once.

Again the little voice comes.

I stuck.

Her mother hears her and calls out to her, asking what is happening.

The voice again...
I stuck my hand.

The mother jumps up at once and goes to investigate.

Yes, what the child said was correct. She had stuck her hand into the video player and couldn't get it out.

Thankfully it was easy to extricate. Of course, as soon as her hand was freed, she then returned to her post, this time shoving TWO hands in.

What can you do?

Edited to add:  For more Special Exposure Wednesday click here.

Saturday, October 16, 2010

A Day at the Spa

Yes, you read that correctly!  Today I enjoyed a day at the Spa with the lovely ladies in my SN mum's support group.  This group has been such a blessing to be a part of.  I met one of the mums at hydrotherapy a couple of years ago, and quickly sussed out that she was a Christian.  By week two of hydrotherapy I asked if she was interested in starting a support group only to discover that she was already a part of one, so by week 3 I had gone and joined them (much easier than starting your own group).  We meet once a term to catch up and pray for our children.  I think at the time Murray thought I was crazy to go and meet up with a bunch of ladies who I had never met before - except for the one I had known for a grand total of two weeks.  I think he underestimated my desperation to meet other people who 'lived in my world'.  In the group all our children have different types and degrees of disability but it is great to be able to support each other and rejoice over our children's achievements.

This term's meeting was held at the Day Spa for some luxury and pampering, seeing as luxury and pampering is not something any of us usually make time for.  We had a lovely lunch and then some of us had massages.  I had my first ever - yes in my whole life - manicure, and then we went for a swim in the spa.

LUXURY.  It was lovely - just what I needed after my first week at work.

AND, to make it even better, I came home to a TIDY house.  Murray had tidied up the toy carnage AND vacuumed up the glitter from the craft explosion.

I tell you there might just be something to this marriage counselling caper after all.

I'm curious to know if other people meet with, or feel that they need to meet with other parents who share this journey?   I'm not usually a 'support group' type of person, but at the time I met these ladies I was really desperate to meet other people - actual real live people (not that you aren't all real and alive - but I don't see most of you in my day to day life) who were on this journey.  For me that is part of what blogging is about too.  I have met so many great people who 'live in my world' and really appreciate being able to connect with other people who 'get it'.

So, thank you to my Spa ladies for your support, and thank you also to  all of YOU for your support.

Wednesday, October 13, 2010

Special Exposure Wednesday: Working and Walking

Ashlea is continuing to do amazing things in her kaye walker. Yesterday she walked continuously for 15 minutes at preschool. We have been trying to use the walker around the house a bit more too. At present Ashlea crawls to get around - which is fine when we are at home, but she won't be able to do that out in public once she gets much older.  If given the chance she would crawl anywhere - down steps, out doors (again today), on shopping centre floors, down hospital corridors, you name it.  For someone with so much sensory defensiveness, her willingness to crawl on dirty surfaces is quite remarkable.

We have been encouraging Ashlea to walk outside as well - but seeing as the ground is very hard, there is always an adult within arm's reach.  Actually, seeing as she is a bit of a kamikaze there is always an adult within arm's reach.  If I let her she would try and run down the ramp in the walker.

Shhh - don't tell the physio - we even tried it in bare feet!

And for those wondering how the working is going - so far so good. Day one went very smoothly and Murray coped very well with getting the girls ready and out the door on time.  The only thing that he struggled to cope with was Ashlea's pigtails.  As you know from previous SEW's, her hair is a disaster in the morning so we'll forgive him for that one.  In the end he took the hairbrush to preschool and handed it over with the child!

For more SEW, click here.

Monday, October 11, 2010

Back to work!

School started back today, and tomorrow I start my increased working hours.  I will be working Tuesdays, Wednesdays and Fridays.  I am really not sure how I am going to manage as I already find life exhausting, but it needs to be done, so I will do it.  I am quite worried about how Murray is going to go at getting the kids dressed and out the door for school and preschool without yelling at them, but hopefully he will get used to it quickly (he is NOT a morning person).

Part of me is looking forward to going back to work.  It feels almost symbolic to be able to return to work.  Firstly it symbolizes that we're broke, but more importantly it symbolizes that life is stable enough for me to consider doing this.  Once upon a time Ashlea's appointments took up pretty much the whole week, and there were regular emergencies and hospital admissions.   Just quietly - I can't say it out loud in case everything turns pear shaped - but it is almost 2 years since Ashlea's last hospital admission. Woohoo!!  I'm whispering that as I don't want to  invite calamity.

It has really struck me recently that life is far less dramatic than it used to be.  Again I know I shouldn't say that out loud, but things are really normal now.  Our kind of normal anyway.  Yes there are major things that most people consider abnormal - my child has a disability and will need a kidney transplant, but aside from that, things are normal.  We do normal things.  My kids go to preschool like other kids.  They do swimming lessons like other kids.  They go to Sunday School like other kids.  I feel like things are as normal as they'll ever be!!

So, think of me tomorrow morning.  I will be starting work at 7:15am (gulp) so I can leave and get back in time to get the twins from preschool.  And don't worry that I won't have time for blogging - I'll be sitting in front of a computer all day so will have plenty of opportunity to keep up with everyone's news!!

I'll let you know how it goes!

Friday, October 8, 2010

Kidney Review

School holidays are drawing to a close.  I have really enjoyed this break.  The last two holidays I was just so exhausted and grumpy from school that we stayed home in our pyjamas most days!  This time we have had some warm weather and lots of friends over to visit.  It has been lovely and relaxing.  I think the coming of spring is also lifting me out of my winter slump.

The only appointment we had these holidays (I know - just one - what a luxury) was at the kidney specialist.  Ashlea had bloods before hand which was traumatic as usual.  Fortunately we had another good blood collector who got the vein first go.  It didn't stop Ashlea from screaming blue murder of course.  She started out with sobbing and saying "Want to say bye bye", but when that didn't work she went for all out screaming.  Loud, enraged, top of your lungs screaming.  You can imagine what that does to the rest of the kids in the waiting room. We come out of the pathology room and all the waiting kids stare at us with eyes as big as saucers as they wonder what on earth sort of torture is going on back there with all that yelling.

The numbers (for my records) are:
Creatinine: 243
Urea: 9.1
Potassium: 3.6
Sodium: 139
Bicarb: 23
Phosphate: 2.47

Her phosphate is too high apparently, but a tweak to her feeds should fix that.  Also her alkaline phosphatase is still sky high (1329 instead of 325).  The doctor thinks that is coming from her bones rather than her liver as all her other liver enzymes are normal, and she does have diagnosed bone disease from her kidney failure.  The doctor is going to follow up with someone who specialises in this area and let me know if he thinks we should investigate further.

Her creatinine was also 20 points higher this time.  I don't know if this was a one off jump up to 243, or the beginning of another increase.  It of course triggers my worry button.  What if this is the beginning of her creatinine climbing.  What if she is going to move to End Stage Renal Failure sooner than we thought?  What if, what if, what if - with the biggest what if always being... what if she dies.  Why does my mind still jump straight to that fear even when things are going really well for her?  It obviously still lurks at the back of my mind.

I really try and avoid thinking about Ashlea's kidney failure as much as possible.  I can cope with all the disability stuff, but the kidney stuff is BIG.  It is a BIG DEAL to need a kidney transplant.  It is a big deal to give someone a kidney.  It is too big for me to think about right now, so I am going to go back to ignoring it.  I put it on the shelf between appointments and am quite successful at not thinking about it.  It is just when we have check ups that I am reminded.

Kidney failure is a big deal.

I'm putting it back on the shelf now. Way, way at the back.

Wednesday, October 6, 2010

Special Exposure Wednesday: Sensory Screaming...Sensational???


Yesterday we took the girls to the Colin Buchanan concert.  Emma and Audrey loved it.  Ashlea ...  not so much.

Last year when we went she cried at the begining of the concert, but then settled down after the first 10 minutes or so.  Not this year.  This year she howled.  HOWLED I tell you.  For the entire concert.  Thank goodness it was held in a church building where they have a sound proof cry room.  Yep, we spent most of the concert in the cry room.

Of course as soon as it was all over she was happy again.  We hung around to meet Colin after the show - he is such a lovely guy and always makes time to meet all the children. 

I would love to one day be able to tell him how much one of his songs meant to me when the girls were in the nursery.  I had been hoping to say something to him yesterday, but seeing as I felt like throttling one of those nursery survivors for her behaviour, I didn't really feel like it on the day!

The song is one of Colin's called "Be Strong and Courageous".  When the girls were in the nursery, that song gave me more comfort than anything anyone could say to me.  There is one line in particular that stands out:
He (God) holds all his little ones safe
Whenever Emma watched the DVD containing that song, I would hear it and think of my extremely little ones being held safe.  Not necessarily safe in worldy terms.  There was still no guararntee of their survival, but I knew that God was holding my little ones safe for all eternity - and that gave (and still gives) me comfort more than anything else.

Of course whenever I hear the song now I bawl my eyes out as it takes me straight back to that time.  Even typing about it is making my teary!!

Be Strong and Courageous  -  Colin Buchanan

Be strong and courageous
the Lord of the Ages
Holds all His little ones,
Safe by His side

Be strong and courageous
the Lord of the Ages
Holds all His little ones safe

Do not fear the fire,
Do not fear the water,
Do not fear the thunder,
Jesus has conquered them all.

Do not fear the darkness
Do not fear the sadness
Do not fear the sickness
Jesus has conquered them all

Do not fear the enemy
Do not fear the poverty
Do not fear eternity
Jesus has conquered them all

Be strong and courageous
the Lord of the Ages
Holds all His little ones,
Safe by His side.

Be strong and courageous
the Lord of the Ages
Holds all His little ones safe.

He holds all His little ones safe.

** Apologies to Colin if I got the order of the verses muddled **
** As if he'd ever read this blog and know about it **

Click here for the rest of Special Exposure Wednesday.

Sunday, October 3, 2010

This Married Life

Anyone else think from time to time that being married is a P I T A ???

I was undecided about whether to publish this post as it is a bit of a taboo topic, but I feel that I have been holding back while blogging, and I don't see the point of that.  Of late the topics I have blogged about have been fairly lightweight. Nothing meaty.  Nothing particularly insightful.  However, that isn't because there has been nothing going on.  There has been plenty going on.  It is just something that I am unsure of whether I should blog about.

So, here goes.

Murray and I are having ....  wait for it ... couples counselling.

I hate it.

Its nearly as bad as root canal, and is adding to my stress levels like you wouldn't believe.

We have got to the point however, where it is very hard to parent / cohabit / whatever, as we are so NOT on the same page. About anything.  Something needs to change.  Things need to improve.

So...counselling it is.

Is anyone else game to open up on this subject???

Rumour has it, that the divorce rate for families of a child with a disability is DOUBLE that of the general population.  I don't know if that is true or if it is a 'disability urban myth'.  If the general population's divorce rate is already 40%, that puts us parents of special needs kids in strife.

Do you think having a child with a disability has affected your marriage?  If so, how?

I think for us it has just worsened things that were weaknesses before, but with less stress we might have been able to let them slide.  I remember reading somewhere - can't remember whose blog - about how over time it is very easy for a couple to fall into the trap of one person doing all of the work - and gradually becoming increasingly resentful.  That so describes me.  But for me it is not just about the physical support, it is the lack of emotional support.  I don't feel that Murray is able to support me.  He is too in need of support himself - support that I can't give as I have nothing left to give by the time I have done everything for the children.

I don't know what the answer is.

Hopefully this counsellor will have some ideas.  She seems like she knows what she is doing.  Doesn't mean I have to like it though.

Because this is one of those topics that no one talks about it makes me wonder....  Is it just us???  Or are other people in the same boat? And if you're NOT in this boat...what is your secret?

Friday, October 1, 2010

Fang No More

As I expected Emma's 5th tooth fell out today.  It was hanging by a thread and driving her nuts, so she let me pull it out.

After she brushed her teeth to go to bed, we realised that the middle fang (number 6) looked like this:

It had to come out.

Action shot...

All done.  Now she has lost 6 teeth.  She fleeced the tooth fairy for those last two, demanding $5 as she had let me pull them out.

Here she is examining her new look in the mirror.

I'll try and get a better picture over the weekend!