#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.

#1312 Wednesday 3 August

Sleeping???? ..... she woke at 1am last night ..... very wide awake!  I tucked her back in and showed her the clock.  "When the clock says six, you can come upstairs." It worked.

#1311 Tuesday 2 August

Extract from the school notebook .... The teachers say .....
"Hi Naomi and Ian - Kaylia ran down the corridor to the house today to the toilet. On the way she hit the corner of the wall, rebounded into a bookcase and then into a door frame. I'm not sure if she will have any bruises but she was traveling at speed so.....?
Just thought I'd better let you know."

On another subject..... her transition from Risperdal to Seroquel is about half way through .... and already we are seeing a big reduction in her appetite. Her behavior is getting a bit hairy but she's better at managing it herself now.
Her sleep is suffering though .....