Hi all
It's been a good day! After yesterday (more later), Kaylia had an unsettled night and in the morning we tried to get her to sleep in. She'd wake up and say "shower!" .... so I'd say "yes" and stay put .... she would then go back to sleep! The repeated many times till 10am! It was a good sleep in ..... but she needed it.
Yesterday was the last day at school and she had lots to eat during the day. By tea time she didn't want to eat. She went to bed early .... and wet the bed at 11pm. She slept a bit after that but by 2am we gave up and I took her downstairs. At about 4am she finally slept.
This morning she had an excellent therapy session .... she loves it! Followed by our routine trip to the op shops, the Midland office .... and home for tea. Now it's after tea time and we're watching ABC4Kids before bed. (and popcorn)
Now we have two weeks of holiday routine .... Kat and I 'split shift' to get through it.
Saturday, July 7, 2012
Thursday, July 5, 2012
#632 Thursday 5 July
Rant! Beware!
I have had a morning of discovery of yet another instance of "reduction of benefits by stealth" by the federal government. You may have noticed that in the last budget, the government decided to cease paying the refund for education expenses and to replace it with a lumpsum payment regardless of expenses. On first glance this seems like an improvement .... but what wasn't clear was that the lumpsum is only payable if you are eligible for the Part A benefits!
I found this out when I went to find out why we hadn't been paid .... and found out that our Part A entitlement had been cancelled 5 years ago ..... and never reinstated despite being eligible ever since. I now have a small mountain of claim forms to complete and lodge .... and there are two years for which we can no longer claim.
All this happened when we were having the toughest time with Kaylia and we were the most vulnerable. The system ... rather than trying to help people in need ... is stacked against them.
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More .... it may not be quite so bad. I noticed (while submitting the current online claims) that I had lodged a claim in 2009 which still has not been processed .... the explanation is that the volume of claims due to natural disasters has been so great that they are still processing claims from that period! This means that I may may be able to argue that if their processing had not been delayed, I would also have lodged a claim in 2010 ..... my failure to lodge in 2010 is due to their processing problems. If this is accepted I may be able to still claim for 2010.
Kaylia is home from school. She seems very happy. She's gone off to the playground with Kat.
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Bedtime:
We're very confused! Kaylia has taken herself off to bed in her own room! We've been able to watch two programs on TV! Naomi and I have a few minutes of time to ourselves ..... something we haven't had for a couple of years.
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WHAT'S WRONG!!
I have had a morning of discovery of yet another instance of "reduction of benefits by stealth" by the federal government. You may have noticed that in the last budget, the government decided to cease paying the refund for education expenses and to replace it with a lumpsum payment regardless of expenses. On first glance this seems like an improvement .... but what wasn't clear was that the lumpsum is only payable if you are eligible for the Part A benefits!
I found this out when I went to find out why we hadn't been paid .... and found out that our Part A entitlement had been cancelled 5 years ago ..... and never reinstated despite being eligible ever since. I now have a small mountain of claim forms to complete and lodge .... and there are two years for which we can no longer claim.
All this happened when we were having the toughest time with Kaylia and we were the most vulnerable. The system ... rather than trying to help people in need ... is stacked against them.
.
More .... it may not be quite so bad. I noticed (while submitting the current online claims) that I had lodged a claim in 2009 which still has not been processed .... the explanation is that the volume of claims due to natural disasters has been so great that they are still processing claims from that period! This means that I may may be able to argue that if their processing had not been delayed, I would also have lodged a claim in 2010 ..... my failure to lodge in 2010 is due to their processing problems. If this is accepted I may be able to still claim for 2010.
Kaylia is home from school. She seems very happy. She's gone off to the playground with Kat.
.
Bedtime:
We're very confused! Kaylia has taken herself off to bed in her own room! We've been able to watch two programs on TV! Naomi and I have a few minutes of time to ourselves ..... something we haven't had for a couple of years.
.
WHAT'S WRONG!!
Wednesday, July 4, 2012
#631 Wednesday 4 July
The night turned out ok .... after we spoke to the nurse, Kaylia's temperature dropped and she slept well for the rest of the night. In the morning her temperature went up again .... it does this very quickly .... and it can go down again just as quickly.
I have been trying to take advantage of carer respite offered by an federally funded group but it has all become too hard .... so many boxes to tick and hurdles to jump .... I don't have the mental energy for it so I have cancelled the application. The final straw came when they needed a letter from the doctor authorising the current system of giving Kaylia a top up of Lovan when she needs it ..... this is something that we have devised from experience ... not on doctor's orders.
I understand the respite agencies need for formal documentation ... but this need conflicts with our needs and resources .... it makes it all too hard. In addition to the doctor's letter they would also require that each extra dose of Lovan be individually sealed in a blister pack ..... too hard.
Is anyone else experiencing the phone calls from "Microsoft"? They call to tell you that there's a problem on your computer and if you just let them access your computer then they will fix it!
This happens several times a day now .... I just hang up.
I have been trying to take advantage of carer respite offered by an federally funded group but it has all become too hard .... so many boxes to tick and hurdles to jump .... I don't have the mental energy for it so I have cancelled the application. The final straw came when they needed a letter from the doctor authorising the current system of giving Kaylia a top up of Lovan when she needs it ..... this is something that we have devised from experience ... not on doctor's orders.
I understand the respite agencies need for formal documentation ... but this need conflicts with our needs and resources .... it makes it all too hard. In addition to the doctor's letter they would also require that each extra dose of Lovan be individually sealed in a blister pack ..... too hard.
Is anyone else experiencing the phone calls from "Microsoft"? They call to tell you that there's a problem on your computer and if you just let them access your computer then they will fix it!
This happens several times a day now .... I just hang up.
Tuesday, July 3, 2012
#630 Tuesday 3 July
Ooo wot a nite! After the midnight run I took Kaylia downstairs and soon found that her thermostat had jammed..... she was burning hot and sleeping badly .... so till 4am I was cooling her and regulating her body temp so she could sleep. Of course to do this meant that I didn't sleep. Par for the course.
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Later: AJ arrives 16 August! Good.
.
9pm
Kaylia is not well ... Temp 37.7 .... I've rung Health Direct ... they tell me that this is OK and it's most likely a virus. Kaylia is snuggling up to us and she is radiating heat! Tonight is quite cold so this is useful!
.
Later: AJ arrives 16 August! Good.
.
9pm
Kaylia is not well ... Temp 37.7 .... I've rung Health Direct ... they tell me that this is OK and it's most likely a virus. Kaylia is snuggling up to us and she is radiating heat! Tonight is quite cold so this is useful!
Monday, July 2, 2012
#629 Monday 2 July
Another cheap fare! I don't need this one ... anyone else want a trip to Bali?
Air Asia ... Travel from 18 Sep - 30 Nov 2012 - $200 return
The weekend movie routine is becoming a problem .... Kaylia is very keen to go to the movies ... but she doesn't want to watch the movie!! She just wants the popcorn and icecream. This is a real problem as she becomes a nuisance in the theatre. We'll have to find an alternative I think.
Tonight is Nandos night! It has become a firm part of Kaylia's routine .... that's the excuse I use! I'm not objecting and she loves it. I've gotta say, their loyalty scheme is one of the better ones .... we seem to get a free meal quite often.
I went for a walk around the vicinity of the Midland office today .... there are so many good investment opportunities round here .... I wish I had some spare money! Ah well .... the exercise is good.
Speaking of exercise .... my health matters are making good progress lately .... my weight is coming down and I can see that I will reach my 90kg goal eventually. This of course is excellent for diabetes control. In addition my prostate enlargement issues have been fixed .... without resorting to surgery. My doctor is happy and I'm happy too.
Air Asia ... Travel from 18 Sep - 30 Nov 2012 - $200 return
The weekend movie routine is becoming a problem .... Kaylia is very keen to go to the movies ... but she doesn't want to watch the movie!! She just wants the popcorn and icecream. This is a real problem as she becomes a nuisance in the theatre. We'll have to find an alternative I think.
Tonight is Nandos night! It has become a firm part of Kaylia's routine .... that's the excuse I use! I'm not objecting and she loves it. I've gotta say, their loyalty scheme is one of the better ones .... we seem to get a free meal quite often.
I went for a walk around the vicinity of the Midland office today .... there are so many good investment opportunities round here .... I wish I had some spare money! Ah well .... the exercise is good.
Speaking of exercise .... my health matters are making good progress lately .... my weight is coming down and I can see that I will reach my 90kg goal eventually. This of course is excellent for diabetes control. In addition my prostate enlargement issues have been fixed .... without resorting to surgery. My doctor is happy and I'm happy too.
Sunday, July 1, 2012
#628 Sunday 1 July 2012
What will today bring? .... or more importantly ... how well will we keep her occupied today?
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I still have to pinch myself and wonder at the concept of our imagination ..... The world within our mind! We can go wherever we wish .... do whatever we wish. It's the vital component that is missing in her mind. How do you "kick start" imagination? (any ideas yet Zoe?)
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Imagination is the ability that allows children to play ..... to enjoy reading ..... to anticipate .....
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.
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Hang on! Kaylia can "anticipate" school. ..... a trip in the car ..... so there is a form of imagination.
Can we develop that 'form' into a broader skill? Watch this space!
.
.
.
.
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Brainburst! During a car trip I discussed the imagination topic with the guru ....
.
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An explanation is that there are different forms of imagination .... when Kaylia remembers a previous pleasure (such as Bali or school or icecream) she can imagine the memory and anticipate a future event ....
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Reading involves understanding the words .... linking the words to a memory, to a sensation ..... if her understanding is not enough to make that link, then the pleasure from the imagination doesn't happen.
.
Creative imagination .... imagining a situation or event that is not part of her past memories .... she's not there yet.
.
After arriving home she's miserable ... whining .... we hate this. We can't tell what the problem is. She just complains.
.
I still have to pinch myself and wonder at the concept of our imagination ..... The world within our mind! We can go wherever we wish .... do whatever we wish. It's the vital component that is missing in her mind. How do you "kick start" imagination? (any ideas yet Zoe?)
.
Imagination is the ability that allows children to play ..... to enjoy reading ..... to anticipate .....
.
.
.
Hang on! Kaylia can "anticipate" school. ..... a trip in the car ..... so there is a form of imagination.
Can we develop that 'form' into a broader skill? Watch this space!
.
.
.
.
.
Brainburst! During a car trip I discussed the imagination topic with the guru ....
.
.
An explanation is that there are different forms of imagination .... when Kaylia remembers a previous pleasure (such as Bali or school or icecream) she can imagine the memory and anticipate a future event ....
.
Reading involves understanding the words .... linking the words to a memory, to a sensation ..... if her understanding is not enough to make that link, then the pleasure from the imagination doesn't happen.
.
Creative imagination .... imagining a situation or event that is not part of her past memories .... she's not there yet.
.
After arriving home she's miserable ... whining .... we hate this. We can't tell what the problem is. She just complains.
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