Bali day #1
Happy Birthday Tina! (We both have the same birthday.) Tina took us to the airport bright & early and we had an uneventful pre-flight time. The flight was a dream .... Kaylia played iPods for half the flight .. then just went to sleep! Customs in Denpasar was a breeze with our usual VIP bloke waiting for us .... then it was off to Nusa Dua and book into the Novotel. Our room is huge! I had explained about Kaylia ages ago and they allocated us to a suite designed for disabled visitors!
After a settling in swim, we went exploring the resort and found the 'Pause Cafe' - really good for Kaylia - and us! Just the sort of snacks we all like plus delicious milkshakes.
Then it was downtime for Kaylia while Ian went for a walk to expore the surrounding streets. This is a really great area to stay! The resort is good and nearby are all the restaurants, markets, spas etc that you could wish for. We'll be back to this place in future I can see.
We had hoped that Kaylia would allow us to have a special birthday dinner but it was not to be. The resort has a special 'Rijstaffel' meal tonight and it was beautiful food ... but we had to abort halfway through the main course .... [Get up! Walk!] This sort of instruction is usually indicating high anxiety .... so it is wise not to ignore the warning signs. We 'tested the waters' with a few diversionary tactics but the conclusion was that the night was over .... so we're back in our lovely room enjoying DVDs and books.
Thankyou for all the SMS'd birthday wishes.
Saturday, August 14, 2010
Thursday, August 12, 2010
#46 Thursday 12th August 2010
Well, after decreasing the Risperdal I think there has been a decrease in the headaches so although it is subjective, I think the theory is proved. The mix is not perfect yet but we're getting closer to the right dose. The frustrating thing is that it is difficult to 'get it right' ... and when you do, the success is temporary. Not too long and you're trying to find the right dose again!
Kaylia is doing well at school. She really likes being there and if I hang around for too long after we get there, Kaylia starts telling me to go .... 'Bye ..... Bye!' Her reading seems to be good - she recognises words well ... she can't say them well because the messages get mixed up on the way from brain to lips .... but she knows what the words are.
We leave for Bali in about 36 hours and Kaylia has it sorted ..... Thursday ... Friday .... Saturday - Bali. On previous trips, I've kept a diary on the computer and this time I'll be able to upload the diary to this blog each day .... I'll enjoy that! (Anyone who doesn't enjoy it ... well you don't have to read it!!).
Kaylia is doing well at school. She really likes being there and if I hang around for too long after we get there, Kaylia starts telling me to go .... 'Bye ..... Bye!' Her reading seems to be good - she recognises words well ... she can't say them well because the messages get mixed up on the way from brain to lips .... but she knows what the words are.
We leave for Bali in about 36 hours and Kaylia has it sorted ..... Thursday ... Friday .... Saturday - Bali. On previous trips, I've kept a diary on the computer and this time I'll be able to upload the diary to this blog each day .... I'll enjoy that! (Anyone who doesn't enjoy it ... well you don't have to read it!!).
Monday, August 9, 2010
#45 Monday 9th August 2010
Tiwa is home! Kaylee is happy! We're all happy.
Kaylie has had some good nights lately .... she has been having headaches again so I've cut down on the Risperdal (to the pre-headache level) and left the Lovan at the new higher level. I think it's the Risperdal that is producing the headaches ... so we'll see. The higher levels of medicine seemed to be reducing the anxiety a bit but that cannot be at the cost of headaches!
Kaylie has had some good nights lately .... she has been having headaches again so I've cut down on the Risperdal (to the pre-headache level) and left the Lovan at the new higher level. I think it's the Risperdal that is producing the headaches ... so we'll see. The higher levels of medicine seemed to be reducing the anxiety a bit but that cannot be at the cost of headaches!
Friday, August 6, 2010
#44 Friday 6th August 2010
The past two nights have been good - possibly because of a new variety of Melatonin ... this form is a slow release tablet which may be extending the effect further into the night. Or the good sleep could be due to a reduction in anxiety levels from the small increase in the morning medication.
It can very interesting to see how her mind works at times .... we constantly look for 'high value' things to be motivators during therapy .... and I noticed that some things that I know she REALLY likes, she won't have them as a reward ..... I think it must be that as a reward, she knows that she'll get the goodies in small doses ... whereas she really wants it in a BIG dose. So - no thanks!
One week to Bali!
It can very interesting to see how her mind works at times .... we constantly look for 'high value' things to be motivators during therapy .... and I noticed that some things that I know she REALLY likes, she won't have them as a reward ..... I think it must be that as a reward, she knows that she'll get the goodies in small doses ... whereas she really wants it in a BIG dose. So - no thanks!
One week to Bali!
Wednesday, August 4, 2010
#43 Wednesday 4 August 2010
The past two days have been a return to the anxiety type behaviours that we had earlier in the year ... with the disturbed sleep as a result! This change could be due to the medication 'plateau'ing (ie the effect wearing off) ... or it could be chicken pox effect? I'll try some experimenting.
Needless to say ..... we are tired! And I'm tired of being tired! ... and Naomi's tired of being tired of being tired!
I was at work today and it was so hard to concentrate ... I kept forgetting what I was doing.
Not long to our holiday!
Needless to say ..... we are tired! And I'm tired of being tired! ... and Naomi's tired of being tired of being tired!
I was at work today and it was so hard to concentrate ... I kept forgetting what I was doing.
Not long to our holiday!
Monday, August 2, 2010
#42 Monday 2nd August 2010
Kaylia is in a good phase ... she has had some good sleep, she seems better after the 'pox' .... but she seems a bit more 'stimmy'. We will watch this over the next few days and consider whether to increase her levels of Risperdal & Lovan. It will be important to get the medication level right as we get ready for Bali in 11 days time.
Today was a 'uni day' for Naomi and so Kaylia has had a 'daddy day'. ( Going by the number of times she asks for mummy, she doesn't like this very much!)
In therapy today we noted that the Jodi style of "No-o-o-o-o" seems to have faded away. [Hi Jodi!] She's begun a number of new exercises in therapy ..... and Ian is now learning to be the therapy assistant.
With the ongoing lack of work for Ian, we are re-financing the house loan to pay for the next year of therapy. If more work happens, we won't need it as much .... but if work doesn't happen, the re-arrangement of finances will be very important.
Today was a 'uni day' for Naomi and so Kaylia has had a 'daddy day'. ( Going by the number of times she asks for mummy, she doesn't like this very much!)
In therapy today we noted that the Jodi style of "No-o-o-o-o" seems to have faded away. [Hi Jodi!] She's begun a number of new exercises in therapy ..... and Ian is now learning to be the therapy assistant.
With the ongoing lack of work for Ian, we are re-financing the house loan to pay for the next year of therapy. If more work happens, we won't need it as much .... but if work doesn't happen, the re-arrangement of finances will be very important.
Saturday, July 31, 2010
#41 Saturday 31st July 2010
Pinch & a punch for the last of the month! Isn't the year flying past!
After 6 good nights in a row, Kaylia had another bad one .... she was awake at 3am and making lots of noise till around 5am. What made the difference? It could be that she is getting over the effects of the chickenpox and so she doesn't need the anti-histamine any longer. Maybe the anti-histamine was acting to keep her asleep through the night.
It is good at times like this that Tina is away ... on bad nights, we don't need to worry about Kaylia waking any one else in the house.
Tina will be home in about a week and we're looking forward to that. Tonight we actually went out! To "Fast Eddy's" for tea. Kaylia is very good in those situations now .... much better than times in the past when we felt that we couldn't face going anywhere!
After 6 good nights in a row, Kaylia had another bad one .... she was awake at 3am and making lots of noise till around 5am. What made the difference? It could be that she is getting over the effects of the chickenpox and so she doesn't need the anti-histamine any longer. Maybe the anti-histamine was acting to keep her asleep through the night.
It is good at times like this that Tina is away ... on bad nights, we don't need to worry about Kaylia waking any one else in the house.
Tina will be home in about a week and we're looking forward to that. Tonight we actually went out! To "Fast Eddy's" for tea. Kaylia is very good in those situations now .... much better than times in the past when we felt that we couldn't face going anywhere!
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