#1319 Saturday 11 August

I often suffer from "Kaylia kicks" ..... many of you will understand and sympathize.   She has no 'volume control' when it comes to physical actions .... a simple leg movement is always executed at high force ..... and if someone happens to get in the way?  Ouch!!  This is one of the unpleasant aspects of autism and there's little hope of it diminishing as she gets older.  What a pain!

#1318 Thursday 11 August

I'm typing this on my phone .... using a Bluetooth keyboard and a Bluetooth mouse  ...... it's neat!

Kaylia woke at 3am this morning ..... and she stayed  awake till 6am .... so I was awake too.  This afternoon we are both very tired.

#1317 Wednesday 10 August

Phew ..... she's still happy!  Its so good.

This afternoon we went to an "Open House" at Kaylia's school.  It was an informal meeting with staff etc. Kaylia clearly liked us being there. 

As I write we're all on her bed and she's singing her head off.

#1316 Tuesday 9 August

Yay!  We have our Kaylia back again! 

She's been very happy today .... no bouts of pain at all. It's now 6pm and she's on her bed singing away.  What a welcome change!

#1315 Monday 8 August

She seems much happier today ..... maybe this points to it being period pain?  I hope so.  It's the least worrying of all the possibilities.

Its after tea now..... we're all flopping on her bed for a while of togetherness before "Dr Daddy" time followed by bedtime. 

#1314 Sunday 7 August

5pm and we've been through another few hours of Kaylia sobbing her heart out from the pain.  We're still no closer to an explanation ..... period pain is still the current theory .... with hopes that it's not endometriosis.

She's calmed at last and she's back on the iPhone.   I have no idea of how we would have coped over the years if iPhones hadn't arrived on the scene when they did.

In general, things have really gone backward in recent days.  For a long time we've had a girl who was very happy ..... but lately she's experiencing such pain that the happy girl is a fleeting visitor.

On the back pain ..... we had started treatment in the private system.... but we were referred to the public clinic because that's the place that back braces are made ..... and the whole process then failed!  So the referral didn't work and two months later, no one knows what is happening ..... and Kaylia is still in pain. Sheesh!

#1313 Saturday 6 August

Kaylia had a really bad day yesterday..... at 1:30pm, school called us to come and take her home ..... when I got there she was curled up on a bean bag sobbing her heart out. Her periods are causing her a lot of pain.

The only solution is heaps of TLC and flop time with us.  It's so hard when we can't do anything for her.

Today .... same again at about the same time.  After a lot of TLC and a car ride, she has calmed .... now she's in the bath with lots of bubbles ..... chortling away. 

This is a horrible feeling ..... we can't even be sure we know what is hurting her.  Naomi is going to do some research tonight to try and clarify.

For those of you who read the Australian news, you may have noticed articles about the NDIS IT problems ...... we are smack bang in the middle of this.  We can't access the normal systems used to get our staff paid for the services they provide ..... so we are working our ....... off trying to make their temporary systems function.  It's a huge cost in time and stress for us ..... and this adds to our problems with Kaylia.  Life is not fun.