#796 Saturday 5 January

It's been a remarkable morning already!  Kaylia has been on a tiny  (0.25ml) dose of Risperdal at bedtime for 2 nights now ..... this morning he speech is noticeably clearer.  She's just left to go to the pool and she says "Goodbye Zoe" VERY clearly and loudly.  This is a real change .... usually the words are mumbled and soft.  While she was getting ready to go, she was given the task of finding the bag that is used to carry towels etc .... I could hear her muttering as she looked ..... "purple bag .... now where is it?"  Again this is a big event.  She is verbalising words that before she had apparently said inside her mind ...... but not aloud.

I've been tidying shelves and came across some instruments  ....        a bugle and a set of mouth organs.  Kaylia asked for the bugle to be blown ... so I did.    Now you know how a bugle cannot be blown softly ... Kaylia looked up in shock and ran for her room.  The door slams shut ... then opens again ... and she calls out "STOP!"

She then took up a mouth organ ... I found another in the same key .... and we had a good session of blowing together.

#795 Friday 4 January

It's been a busy day!  Kaylia has been unsettled but AJ has managed it well ..... including a fall while at the lake.  It must have hurt her as she was upset by the injury .... such things usually don't bother her at all. 

She is currently on a 'reward for drinking' system .... her water intake has to be kept up to counter the dreaded constipation.  Most of her pain episodes are from tummy aches related to constipation.  As always, it is very hard to tell when she is in pain ..... the best indicator is 'high anxiety' type behavior .... we have to investigate then to check ..... a Panadol tablet then works wonders.  A few times lately we have resorted to Panadol and it works well.

Fortunately her verbal ability is improving rapidly ..... the time is not far off when she will tell us how she is feeling.  She has the words for this now ... but the idea of actually telling us doesn't occur to her.

Tonight she is 'rotating' her wishes  - she asks for something ..... she is told the positive answer .... then a short time later she is repeating the request!  She doesn't seem to hold onto the belief in the answer .... she can tell you what the answer is but she still wants to be told again.  This process gets very wearing.

Today Deb has decided to come and spend some time with us as #13!  Deb is from the UK and is in Sydney at the moment.  She will fly over to WA on 10th January and stay here while she does sightseeing around Perth till it is time to take over from AJ.
It has been good to have AJ with us.  She has done an excellent job with Kaylia and always seems to make good decisions.

#794 Thursday 3 January

I think we've just about had enough of the time without Risperdal .... or is it the constipation pain bothering her again?  It's a real challenge to analyze just what is happening for her.   This morning she was being a real pain ... and then I realised that she probably WAS in pain.  A bit of Panadol later and she's much happier.

Tonight we will try a small dose of Risperdal in the evening only ..... see if a really small dose can provide any benefit.

This evening we've been on Skype with Deb .... who will probably be the "Number 13" we have been looking for!  We hope so.  We're also in contact with Kirsty who may be "Number 14" in July!

#793 Tuesday 2 January 2013

She was quite 'hyper' last night and didn't settle to sleep till about 10pm.  Since Risperdal has a side effect of helping her sleep, it's not surprising that she's not sleeping well when she's off it.  She was difficult to manage for most of last night ..... although this 'medication break' has been good, it will be a welcome change to put her back onto the normal dosage.  We have learned a few things from the break and we will try a new dose level ... a bit lower on both R and L .... see if it still works  the same way or maybe even better.

Her current penchant for flushing stuff down the loo continues .... lately she's managing about one toilet roll per day!  I put a new roll on the holder and go back a hour or so later .... It's gone!  She is quite independent during the day and it only takes a lapse in our concentration and she's off!  I'm quite sure that she waits till she knows that she has managed to get to the toilet without us noticing ..... then it's full steam ahead!  Paper Away!

#792 Tuesday 1 January 2013

Happy New Year!
The hour has just turned over .... and Kaylia has just gone to sleep. She's been very restless tonight.

I can hear the distant fireworks ..... in a few more years we may be able to keep Kaylia up for the celebrations!

Morning ... afternoon really ..... a long sleep in.
AJ and Zoe have returned from their gallivanting .... they went to Rockingham to see the NY in.    The fireworks over the water might have looked a little light the above.

Zoe has been away from us ..... housesitting for one of our best friends who have gone to Rotto.  It's been so quiet without her ... and very good to have her home.

Evening .....  the afternoon included a session at the Bilgoman pool .... the water temperature was puuurrrffect.  Now we're waiting for a Skype session with a possible new aupair.

#791 Monday 31 December

New Years Eve!

Tales about Kaylia .... sans Risperdal!

She has to be watched like a hawk now .... if she's quiet, you better watch out!
She seems to want to throw things out ... either in the bin .... or flush 'em down the loo! She was given a lovely twirly toy for Christmas .... it's gone .... and the evidence suggests that it went down the loo!
She likes to just flush the loo .... and put a whole roll of paper in too! Of course the loo then blocks ..... and she was thus able to flood the bathroom the other day.
So we are learning to be vigilant!

I had a real "blond moment" today .. (or is it a grey moment?) ..... I was vacuuming and wanting to change fittings on the machine. I couldn't find the attaching adapter ..... I looked all over the place for it ..... then realised that the adapter was part of the hose! I was holding it in my hand! Duh!

Midday:  She's off at the lake with AJ while we catch up with office work.  I've been creating a summary of the past two years medication record with the changes and what we have seen.  It's very interesting.

Evening
We've been watching "The Fellowship of the Ring" ..... We went to see "The Hobbit" last night and FoR is the next in the story.
..... but at 9pm Kaylia and I are settling to sleep. I'll wake at midnight for the loo run .... and I'll see the New Year in!

#790 Sunday 30 December

The weight reducing effect of being off Risperdal continues .... Kaylia has lost 300gms this week. Our theory that R may be contributing to the anxiety seems to be right. We've reduced the Lovan and she still hasn't needed the top up.


Now we're wondering if we should ask the doctor if we can try something other than R. There are several alternatives ... some we have tried before ... and others that haven't been tried.
With our much greater awareness of the anxiety/stimming balance, we're better equipped to make a good decision. When we were trying to find a workable medication mix two years ago, our knowledge and awareness was much less.
Another theory is that we may be able to reduce both R and Lovan since we now know that R contributes to the anxiety.

It's a complex problem.

Today we're at a family post-Christmas gathering. Tonight we'll Skype with a potential au pair #14 for the second half of 2013. This person is from Scotland and the prospect of "... a wee Scots lass" is a grand thing!