#369 Saturday 10 September

We're at cicerellos in Freemantle ... fish and chips
We went for an afternoon drive to Rockingham .... much time on the swings!



Gee it's a good spot ... lots of memories.

#368 Friday 9 September

Middle of the night again .... she's asleep but I'm not. GOIAB

We've decided the the Risperdal has to go back to the full dose .... the effect of the stimming has become unacceptable. We're so fortunate to have this choice! Even with the weight gain side effect, it's great to be able to actually do something.






A new little ritual has started ..... when I get home in the afternoon, she likes me to have a little 'dance' with her.

The trip to Bali this weekend is off .... the furniture delivery has been delayed. Maybe next weekend.



A "ghostly" Kaylia on the swing.

#367 Wednesday 7 September

Stimmy Status Report:
School? Nooo .... stimming has increased to a level that is interfering with her learning.
Home? Stimming has increased but it doesn't seem to be stopping her from functioning or be preventing the social behaviors we are seeking.
So .... The jury is still out.

Bali .... It looks as though I may be going up this weekend to receive a furniture order! Wacko!

#366 Tuesday 6 September

It was a review day again today. Kaylia's psychologist was very interested in the news of the reduced dose of Risperal .... if she is able to maintain concentration despite the stimming (... NB - if!) then it may mean a new phase in her progress. So over the next days we need to observe her stimming closely.
The reviews are always good because we get reminders of just how much progress Kaylia has already made .... and we get good indicators of her current progress. These in turn encourage us .... maintain our resolve!

#365 Monday 5 September

It's 1:30am .... I was too tired and I slept through the critical hour .... I need to get her up and off for a "wee break" sometime between 12 and 1 .... Or else! So we've just had "or else".

She's asleep again but I'm not.

I'm pondering the nature of blogging .... it seems to me that a person who wants to blog (and who'd prefer that it was read by the followers) must follow some 'rules' .....
The blog must be regular (in posting you nut!)
It should cater for the interest of the reader.
It should be written in an easy style.

Of course a blog does not HAVE to be written for the readers! It can be just a record for the writers own needs.

Evening:
I had a pleasant surprise tonight .... a Fathers Day present made by Kaylia at school .....



Bewdy! I like it!

#364 Sunday 4 September

For a girl who was tired out she managed to stay up late .... It was 10pm before she finally settled. Much of it is the stimming ... the reduced Risperdal is showing clear effect. I don't think any further reduction would be a good idea. At this level we can see a reduction in appetite (yay!) but the stimming is very clearly up. This is generally OK but it affects her night time routine and general agitation level. It makes life harder for us. We'll give it a while longer to see if the price (of appetite control) is acceptable.

We were shopping recently and I realized that much of our anxiety control method revolves around flexibility .... we change our plans moment by moment to seek the path that will lower her anxiety levels. We constantly watch for signs that she is building to a "melt-down" and plan accordingly. In one sense this is very wearing .... and we dream of a time when she can self-manage ... but in another way it can be very relaxing because most of the time we can have no personal plans ... we just go with the flow.

I can hear some voices questioning whether our method isn't creating a spoilt child .... obviously that risk is there .... but we can clearly see the difference between Kaylia as a normal child (wanting her way) .... and Kaylia battling the demon within her that creates such huge anxiety. She tries so hard!

Breakfast: a "bloggish moment"!
We've been trying Ventolin (inhaler plus spacer) to see if the cough is an asthma one ..... the hard thing is to get her to inhale! This morning I actually saw the vapor go in! And then we noticed a girl who was holding her breath and keeping her mouth shut tight  .....
Next moment she swallowed the vapor! (not inhaled)!




Fathers Day lunch at Floreat Beach .... Kaylia went to wade with Mim .... and ended up swimming!