Good night ..... sort of.... noises downstairs at midnight had me up and investigating .... but it wasn't Kaylia .... it was the big T mouse in the fridge for a late night snack! Kaylia was fast asleep! She stayed that way till about 5am ... then it was iPad & cuddles till shower time.
On the wrist front, I've developed a new tactic to try .... I recognise that each movement has a "pain price".... and before I move I consider whether the reason I am moving is worth the pain price I have to pay. If it is, then go ahead while accepting the pain. If not .... don't move ... seek help or find another way to do it. When I was swimming with Kaylia yesterday, I noticed that the action of using the hand for swimming is now quite painful .... when was I last swimming? In Bali in August. So the pain has increased quite rapidly as I don't remember any swimming pain while in Bali.
It's now 3pm and Kaylia & I are down in the Midland office .... I brought some bits & pieces down and while I sorted, she has been doing circuits of the office .... trying out the collection of toys! From time to time I ask if it's time to go home .... NO haha! She likes it!
The news for today is that this morning it was weighing time .... and she has lost a kilo since last weighing a month ago. This is very good! I was looking at some photos of Kaylia taken about a year ago and she has put on too much weight. She needs to loose some.
The current medication dosage seems to be just right .... she is very happy, a little stimmy ... but nowhere near as anxious as she was late last month.
By the way, a certain person was reading the morning newspaper ..... an article about the Qld floods ... it mentions the ADF. What's "ADF"? she says.... "afta de flud"?? !!
- Posted by the Kaylee Blogger
Saturday, January 15, 2011
Friday, January 14, 2011
#145 Friday 14 January 2011
It's 3:30am this time ... she's been up since 1:20am and I've resorted to 'shut the door' procedure again. When she finally realises that she has to stay in her room, she'll give up and lie down. For a while she sings to herself and makes repeated efforts to come out ......
My profound thought yesterday? Kaylia has discovered a new music CD of the Wiggles from the library and at tea time she was having a very happy time with Naomi .... lying on the bed singing the songs. As I listened it occurred to me that her behaviour at that time was appropriate for about a 3 year old level .... and her speech is currently about the same level. Since we have noticed the behavioural developments and the way they're continuing ..... then maybe the speech development will continue in the same way. It's something to hope for.
20 minutes later and she's quietened down ... is she settling to sleep? I hope so. I can get a few hours too.
A few days ago I mentioned an instance of discrimination ..... this has been resolved now. It seems that the staff at the public venue had not been told that if a person with a disability requires a carer, then the carer has free entry. This (free entry for the carer) had been refused for Kaylia but the authorities have now corrected the training for the staff and it shouldn't happen again.
- Posted by the Kaylee Blogger
My profound thought yesterday? Kaylia has discovered a new music CD of the Wiggles from the library and at tea time she was having a very happy time with Naomi .... lying on the bed singing the songs. As I listened it occurred to me that her behaviour at that time was appropriate for about a 3 year old level .... and her speech is currently about the same level. Since we have noticed the behavioural developments and the way they're continuing ..... then maybe the speech development will continue in the same way. It's something to hope for.
20 minutes later and she's quietened down ... is she settling to sleep? I hope so. I can get a few hours too.
A few days ago I mentioned an instance of discrimination ..... this has been resolved now. It seems that the staff at the public venue had not been told that if a person with a disability requires a carer, then the carer has free entry. This (free entry for the carer) had been refused for Kaylia but the authorities have now corrected the training for the staff and it shouldn't happen again.
- Posted by the Kaylee Blogger
Wednesday, January 12, 2011
#144 Wednesday 12 January 2011
I hope you haven't been deafened by the silence ....... I'd got into the habit of daily blog entries and now things have been so busy that I've missed a day!!! The new office is now functional and today saw the first client sessions. Naomi has moved mountains and accomplished great things.
Kaylia has continued on a much more healthy, lower stress level. The medication was obviously too high.
She is developing into such a nice person! She has her moments when you feel like throttling her (just like any 6 year old) .... but there are times where she is just pure enjoyment. Her autism makes it hard to socialise with her in the usual way .... but it is definitely worth making the effort to spend time with her. This can be hard as she doesn't seek your company .... you have to push yourself into her space. Eventually she becomes aware of you and then you can be given little 'Kaylee moments' and all the hard work becomes worthwhile.
- Posted by the Kaylee Blogger
Kaylia has continued on a much more healthy, lower stress level. The medication was obviously too high.
She is developing into such a nice person! She has her moments when you feel like throttling her (just like any 6 year old) .... but there are times where she is just pure enjoyment. Her autism makes it hard to socialise with her in the usual way .... but it is definitely worth making the effort to spend time with her. This can be hard as she doesn't seek your company .... you have to push yourself into her space. Eventually she becomes aware of you and then you can be given little 'Kaylee moments' and all the hard work becomes worthwhile.
- Posted by the Kaylee Blogger
Monday, January 10, 2011
#143 Monday 10 January 2011
It's 4:25 am ..... Kaylia has decided that she is not sleeping tonight apparently. I slept till about 2am while Naomi 'kept the lid on' ..... then I took over and Naomi has gone to sleep. I can hear soft snores from upstairs while Kaylia fights against sleep downstairs. She was very noisy and having a good time till 2 am and I have tried removing her light and DVD player and shutting her in. That way she has less distractions. She still has a 'night light'and the iPad ..... the iPad usually helps her go to sleep ..... anyway, it seems to be working. She tried to get up a few times but she's been quiet for a while now.
While all this was going on, I read an email from Pete (Bullsroar.blogspot.com) to say that he has bought his villa in Sanur in Bali! Wow!! Excitement plus!
The idea of owning a place in Bali has been a real dream for Naomi & I so I can get a huge vicarious thrill from the fact the Pete has actually done it! What a completely live-changing event .....
I go to Bali in 3 weeks time so I'll be able to take the first load of bits & pieces up for Pete and I'll stay in the villa for the 4 nights that I'll be there. WOW ..... this is s.s.o.o.o... exciting!
- Posted by the Kaylee Blogger
While all this was going on, I read an email from Pete (Bullsroar.blogspot.com) to say that he has bought his villa in Sanur in Bali! Wow!! Excitement plus!
The idea of owning a place in Bali has been a real dream for Naomi & I so I can get a huge vicarious thrill from the fact the Pete has actually done it! What a completely live-changing event .....
I go to Bali in 3 weeks time so I'll be able to take the first load of bits & pieces up for Pete and I'll stay in the villa for the 4 nights that I'll be there. WOW ..... this is s.s.o.o.o... exciting!
- Posted by the Kaylee Blogger
Sunday, January 9, 2011
#142 Sunday 9 January 2011
I can dimly remember that Kaylia was up & about during the night .... but I was so asleep that it didn't disturb me! We ended up with a good sleep in.
After three days on the reduced Lovan dose, she still seems much more relaxed & happy. We were shopping today and she raced off and found 4 of her favourite 'Jelly Cups' and put them in the shopping trolley ... she certainly knows how to manipulate! Usually she carefully asks for one!
22 days of school holidays left now. Tomorrow we start the period of the holidays where we're trying to work ... so having our wonderful helper is even more important.
- Posted by the Kaylee Blogger
After three days on the reduced Lovan dose, she still seems much more relaxed & happy. We were shopping today and she raced off and found 4 of her favourite 'Jelly Cups' and put them in the shopping trolley ... she certainly knows how to manipulate! Usually she carefully asks for one!
22 days of school holidays left now. Tomorrow we start the period of the holidays where we're trying to work ... so having our wonderful helper is even more important.
- Posted by the Kaylee Blogger
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