Monday, February 28, 2011

School Musings

I have been thinking about school options for Ashlea next year.

Yes, the egg photo is relevant!

School is going really well for Emma this year. She has two lovely teachers - including one who is passionate about all things green. Emma's class is responsible for taking care of the school's rabbit, chickens and vegie garden. So far Emma has brought home a zucchini, some eggs and some figs for good behaviour.

Suffice it to say that I am happy with the school and would like Ashlea to attend there too.

There is a dilemma though. The school has a support unit for children with a disability. Do I apply for a place in the unit? Or do I apply for a mainstream placing???

At the moment I am leaning towards applying for a position in the unit for the following reaons:

  • I don't believe Ashlea will get enough aide time in mainstream school. Does anyone have a child in mainstream that has an aide for EVERY minute of the day???
  • I think the smaller class sizes will help her (8 children and 2 teachers)
  • I want the close supervision of the unit - especially after transplant. I want to know she is being closely watched as she will be very medically vulnerable to begin with
  • Ashlea has many physical issues that can be dealt with in the unit - tube feeding, not toilet trained etc
  • Ashlea also still has a lot of sensory issues that result in screaming meltdowns during group time at preschool.  I imagine this would be VERY disruptive in a regular classsroom!
  • The unit also has phsyio, speech and OT on site so the children can do their therapy as part of their school program

My concerns with the unit are:
  • What if the other children aren't very verbal?  Ashlea really benefits from being around talkers.  Although I do believe this can be overcome by having Ashlea in some mainstream classes such as reading and maths
  • Even though they call it integration, really, it isn't

PLEASE leave me your opinions about schooling and what has worked for you and your child.

Remember that not only does Ashlea have a physical disability (CP), she also has an intellectual impairment, a visual impairment AND a medical condition.

At the moment I am leaning towards applying for a position in the support unit.  I just don't trust that she would be given enough support in mainstream.  And seriously, I don't know if I have the fight in me to alwyas be on the school's back making sure they are providing for Ashlea's needs.

Friday, February 25, 2011

No new news

I rang this morning to see if our cross match results are in.

Not yet.

So we are still waiting.

Luckily we have had an action packed 24 hours here to take my mind off things.

We have one of those green electricity box thingies out the front of our house.  Did you know they can blow up?

No.  Neither did we.

Last night Carolin was minding the kids - she had just got them all to bed - when there were 2 almighty bangs as the box blew up.  The power went off and my sister realised that the thing was on fire and called 000.  The firies arrived in time and all was good - although rather traumatic for the children.

It got me thinking about emergencies and special needs children though.  Ashlea's wheelchair was in the car at the time.  I think in the past I have always figured if it was a big emergency I would throw all the kids in the car and drive off if necessary.

Last night's mini-emergency highlighted a flaw in our plan.  Our garage has an electric door.  The power was off.  We couldn't get the car or the wheelchair out (we can't open the back of the car to get to the wheelchair without opening the garage).  This meant that while my sister was out the front waiting for the fire brigade she had a hysterical Ashlea in her arms and a hysterical Audrey attached to one leg and a hysterical Emma attached to the other.

Not ideal.

It made me wonder if we should start bringing the wheelchair inside every day - just so we have it as an option to transport Ashlea if something unexpected were to happen.  If we had to run away in a hurry it would be very hard to run with her in our arms while trying to hold on to the other children.

Have you thought of what you'd do in an emergency?  Do you have a plan?  If so, what is in your plan?

Tuesday, February 22, 2011

I heart preschool

Preschool is going so well for Ashlea at the moment.

On Friday she did so well that Mrs Cook made her a certificate acknowledging how many new things she tried that day.  How precious are these certificates - so rare and hard won. Apparently Ashlea:

  • walked in her kaye walker
  • climbed the ladder and slid down the slide
  • kicked a ball
  • rode a hobby horse
  • crawled with a lot of other children
  • played crawling hide and seek with 2 children
  • named pictures
  • identified starting sounds
  • made a spatter painting
  • sat in her new preschool chair

The thing on that list that warms my heart the most is hearing how the other children were playing and interacting with Ashlea.  Apparently Ashlea was crawling on the floor and a bunch of other kids started crawling with her.  When she stopped and rolled over - as she does regularly - they would all stop and roll over too.  How cute.  One of the teachers got a little moment of it on film for me but I don't think I can show it as we all just signed a waiver saying we wouldn't post pics of other people's kids on the web.  Sigh.

When I arrived at preschool pickup, one little boy said to me:

She's a very fast crawler!

How gorgeous.  No comment about her wheelchair or walker, just about how good a crawler she was.


Sunday, February 20, 2011

And so we wait

We are almost half way through the wait to see who has the best cross match for Ashlea's kidney transplant.  They said it would take about 10 working days.  I am going to call them on Friday 'just in case' the results are back, but I don't really expect to hear anything until the following week.

I don't feel like it is on my mind all the time, but I have been waking up at 4am feeling like someone is sitting on my chest.

So, I guess that shows that it is on my mind.

How do you cope with stress???

I internalise it.  Or attempt to anyway.  Stuff it all in and don't talk about it and then feel like my chest could explode from holding it all in.

At the moment there is kidney stress, money stress, marriage stress, school choice stress, appointment overload stress, time management stress, you name it - we've got it stress.  All stuffed in.

I ran out of room a long time ago - but still I try and stuff it all inside.  I think I'm going a little nuts actually.  I am SO irritable and moody.  Snapping at everyone.  Not wanting to be around anyone.  Not behaving like someone people would want to be around either.

Clearly I need a better coping strategy.

Any tips?

Wednesday, February 16, 2011

I like to sing!!

I may have mentioned before that Ashlea likes the sound of her own voice. She constantly sings and chatters and babbles away. Not quietly either.  Here she is singing 5 Little Ducks - although she changes it to 5 Little Pinky Ponks. As you can see she is in fine voice!

Of course when the loud noise is coming from her it's OK, but when it is someone else's loud noise - watch out.  We have just started some private OT sessions to help with Ashlea's sensory issues.  The OT uses a therapy called 'floortime'.  I have no idea what it's about really - but am happy to try whatever the OT suggests. Have any of you tried it?  I think it was designed for children with autism, and seeing as Ashlea has many of the same sensory issues these children have, I'm hoping it will be good for her.

We are also going to try a type of auditory desensitisation - which involves Ashlea wearing headphones for half an hour a day.  It could take a whole year of therapy to get her to keep the headphones on for half a minute - but we're determined to give it a go!  She has a CD of fairy music that she loves to listen to, so to try and get her used to the headphones I have told her she can ONLY listen to it through the headphones.  So far she hasn't actually put them on her head - but hopefully she is getting used to the idea of them.  She will even touch them now - but they're still not allowed anywhere near her head!

I'll keep you posted on how we go with that.

Monday, February 14, 2011

They have our blood...

Today Murray, Ashlea and I had blood taken for cross matching to see if one of us is a good match to give Ashlea a kidney.

Neither Murray nor I are particularly good with blood tests, so when we saw how many vials they needed from each of us we nearly fainted on the spot. That picture above is the vials required for one person.

We had an amazing blood collector (Bernadette for those who go to CHW) who got the needle into the right spot the first time on all of us.  Murray has good veins so he was all done in under 5 minutes.  Even Ashlea only took about 10 minutes.  Of course my veins are crap and kept collapsing so I ended up having 6 blood draws over about 40 minutes to be able to get the whole amount.  The good news is that no one fainted, although Murray and I were both close and had to come home and have a lie down (and at one point the nurse made a volunteer stand behind me during the collection 'just in case').  Ashlea is much tougher than both of us and was back to her usual self within 5 minutes.

Now for the hard part - waiting for the results.  We were told it will take 2 - 3 weeks.  You all know that patience is not a virtue of mine so this part won't be easy.

Ashlea also had her regular blood work done today which showed her creatinine is still on the rise - I was kind of hoping it would have stabilised.

Today's results:

Creatinine: 341 (high)
Urea: 16 (high)
Hb: 129 (normal)
Sodium: 142 (normal)
Potassium: 4.2 (normal)

Since this time last year her creatinine has gone from 210 to 246, then 277 and now 341.

When her creatinine rose to 277 in December that pushed her GFR down to 13.  I think this last rise pushes it down to around 10.  Definitely end stage renal failure now.

The numbers don't lie.

Transplant here we come.

Saturday, February 12, 2011

It's starting

It's only February, and I can feel my stress levels starting to rise.

The thought of all those weeks on the treadmill of work and school and therapy and appointments....  it's starting to feel overwhelming.

I can feel a bit of a pity party coming on, so I think I'm just going to get it over and done with right here and now.



If only I didn't have to work.

If only I didn't have to take Ashlea to therapy on my days off from work.

If only I had some time to myself.

If only we didn't have bloods for our cross match on Monday.

If only my 6 year old daughter wouldn't bring home snails in her lunch box from school.

If only Ashlea could go in the pool by herself at swimming lessons.

If only I didn't have to make formula.  Every.Single.Day.

Do you have some if only's???

You know what one of my biggest if only's is?

If only I felt OK.  Had energy.  Felt positive.  Didn't worry.  Preferably all the time.  Or at least a lot of the time.  Most of the time?  Some of the time???

Then it wouldn't bother me that I have to work, and have to schlep to therapy on my days 'off', and that my children like playing with bugs.

OK, the cross match thing that might still bother me.

Monday is the day.

Not sure how long the results take but I know the wait is going to drive me nuts.

If only I didn't have to wait to find out if I can donate a kidney to my daughter.


OK.  Pity party over.

Back to it.

Wednesday, February 9, 2011

The school lunch box

What is in your child's school lunch box?

Emma takes pretty boring stuff to school in her lunch box.

A sandwich.

A piece of fruit.

A drink.

Nothing too interesting.

Its what comes home in the lunch box that freaks me out.

Today there were 3 of these:

And a good half dozen of these:

I thought girls were meant to be 'sugar and spice and all things nice'?

You want to know something a little pathetic?

I am scared of snails.


They gross me out completely.

I'd rather kill a cockroach the size of a chihuahua than have to even lay eyes on a snail.

Do you have a creepy / slimey / crawly critter that grosses you out more than all the others???

Sunday, February 6, 2011

Sweet Relief

The heat wave is over.

The last 7 (or was it 8) days it has been over 35 degrees in north-western Sydney - that's 95 for those of you in the US.  Many days it has been 40 (104).


Ashlea really does not do well in the heat.  I think because of her kidneys she just doesn't have any reserve and is very prone to dehydration.  Fortunately we have air conditioning which has made life quite manageable - we didn't have to sleep on the bathroom floor like some friends.

One confession I do have (other than running the aircon day and night), is that one night I couldn't be bothered to shower the children.  Instead I added bubble bath to the wading pool and they 'bathed' outside.

How did everyone else stay cool???

Friday, February 4, 2011

Preschool Letter

I have decided I will write a letter to the preschool parents to introduce them to Ashlea. Here is what I've got so far.

Dear Preschool Parents,

We are writing this note to all of you to introduce you to Ashlea.

You may have seen her at preschool already.

Ashlea was extremely small and sick when she was born (only 570 tiny grams!) and as a result she has cerebral palsy. This means she needs to use equipment to help her at preschool, so you may see her in her wheelchair, or using a walking frame, standing frame or a special chair. She also wears splints on her legs and glasses. All these things help her to participate fully at preschool.

Ashlea has a visual impairment and can only see things up close to her. You may notice that her left eye looks a little unusual – that is because she is unable to see anything out of it. She can see out of her right eye, but not as well as you or I, so when talking to her or showing her things please stand close by.

Ashlea is a very friendly child and would love it if you came over and said hello to her. She can often be found hanging out with Mrs Cook, or with her twin sister Audrey. Ashlea LOVES attending preschool. Some of her favourite activities are climbing the ladder to the cubbyhouse, crawling through the tunnel and doing paintings.

One other thing you should know about Ashlea is that she is waiting to get a kidney transplant. This means she is more susceptible to illness than other children, so we would really appreciate it if you didn’t send your children to preschool when they are sick. A minor illness for your child can mean a week in hospital for Ashlea :(

Please feel free to come over and say hi to Ashlea and her sister Audrey. 

Unfortunately you probably won’t see us (the parents) at preschool much as we both work, but if you do see us we are more than happy to answer any questions you or your children have about Ahslea.

Murray & Alison
(Ashlea & Audrey’s parents)

I have of course included some very cute photos of her in the letter too!!

What do you think?  Can you think of anything else that might be important?

Wednesday, February 2, 2011

Heat Wave

We are mid heat wave here at the moment. What's the best way to cope with a heatwave when you don't have a pool?

Playing water guns with Daddy!