Bad night! I spoke too soon (about her settling at 10pm). ..... she didn't settle till 2am!
It's now going to be a battle to get her back into a good sleep routine.
Later:
It's been a good day .... Kaylia has been re-united with Kym (it's a long story!) complete with shopping trip. We later had another shopping trip with Mummy too!
.... and I found that GOMS had struck again .... I've been very frustrated by the fact that opticians in Australia will not make me a pair of glasses without a current prescription .... I'm not allowed to use the prescription that I'm happy with - I have to have an official stamp of approval! Sheesh! (Fortunately I can get any glasses I want in Bali!) The level to which we are over-governed in Australia is amazing.
Saturday, September 3, 2011
Friday, September 2, 2011
#362 Friday 2 September
It's 2:30am and Kaylia is downstairs again. She's been awake for an hour with the cough.... There won't be any school today either so she won't be happy. She likes her school.
This (sickness bout) is hard on Naomi too .... she's working too hard and has used up her "reserves" .... I don't know what the answer is. Survive.
The past few years have had periods that were harder .... but I guess we had "reserves" that kept us going in those times. Now it feels as if the "tank is dry".
Bed-time:
Poor thing has been quite sick today ... She slept till 11am ... had 'brunch' .... went for a drive to the shops .... then it was back to bed for a sleep from 2pm to 5pm! She had played all evening and she's now settling at 10pm.
This (sickness bout) is hard on Naomi too .... she's working too hard and has used up her "reserves" .... I don't know what the answer is. Survive.
The past few years have had periods that were harder .... but I guess we had "reserves" that kept us going in those times. Now it feels as if the "tank is dry".
Bed-time:
Poor thing has been quite sick today ... She slept till 11am ... had 'brunch' .... went for a drive to the shops .... then it was back to bed for a sleep from 2pm to 5pm! She had played all evening and she's now settling at 10pm.
Thursday, September 1, 2011
#361 Thursday 1 September
Wow .... isn't the year flying past! Things are so busy. Yesterday's blog entry did not happen .....
Kaylia has a bad cough at present and it was off to the doctor yesterday. Fortunately the "nasties" that are going round were ruled out .... so we think it's likely to be asthma again. Each year she gets a session of asthma that presents as a cough .... and the shortness of breath is a contributing factor to anxiety! What a complicated web of issues we have here.
Now we try to get Kaylia to breathe in through the Ventolin inhaler / spacer. .... This is difficult. She just doesn't get how to do it! She want to blow rather than suck.
She will probably have a late start for school ( if she goes) ..... she has had a disturbed night with the cough.
Wristy History
The wrist is almost past history now .... but I'll record the current "state of play" so I can refer to it in future.
The pain levels have dropped hugely in the past three weeks .... I can nearly say that there is no pain now! This is due to some exercises that the physio had me doing .... coupled with me realizing that the exercises should only be done to the point of beginning to feel pain. Till then I'd been trying to keep going despite the pain! (Silly me!)
The absence of pain means that I can now work on joint movement .... trying to increase the range of motion that is possible. At present I can only move the wrist about 10 degrees up & down. This will improve over time.
The absence of pain also means that I can rebuild my confidence in using the wrist .... which in turn means that the wrist gets more exercise.
8:30. She'll stay home today. She's been a mess .... a ball of anxiety ..... but the meds have kicked in and she is calm again. Anxiety is horrible.
Late Afternoon:
She's not well. We've been to the doctor and she's now on antibiotics. Her temp went up to 39.4 She'll be home for the next few days. Naomi is not well either.
Wot fun!
Kaylia has a bad cough at present and it was off to the doctor yesterday. Fortunately the "nasties" that are going round were ruled out .... so we think it's likely to be asthma again. Each year she gets a session of asthma that presents as a cough .... and the shortness of breath is a contributing factor to anxiety! What a complicated web of issues we have here.
Now we try to get Kaylia to breathe in through the Ventolin inhaler / spacer. .... This is difficult. She just doesn't get how to do it! She want to blow rather than suck.
She will probably have a late start for school ( if she goes) ..... she has had a disturbed night with the cough.
Wristy History
The wrist is almost past history now .... but I'll record the current "state of play" so I can refer to it in future.
The pain levels have dropped hugely in the past three weeks .... I can nearly say that there is no pain now! This is due to some exercises that the physio had me doing .... coupled with me realizing that the exercises should only be done to the point of beginning to feel pain. Till then I'd been trying to keep going despite the pain! (Silly me!)
The absence of pain means that I can now work on joint movement .... trying to increase the range of motion that is possible. At present I can only move the wrist about 10 degrees up & down. This will improve over time.
The absence of pain also means that I can rebuild my confidence in using the wrist .... which in turn means that the wrist gets more exercise.
8:30. She'll stay home today. She's been a mess .... a ball of anxiety ..... but the meds have kicked in and she is calm again. Anxiety is horrible.
Late Afternoon:
She's not well. We've been to the doctor and she's now on antibiotics. Her temp went up to 39.4 She'll be home for the next few days. Naomi is not well either.
Wot fun!
Tuesday, August 30, 2011
#360 Tuesday 30 August
Therapy wasn't a problem yesterday ..... Kane was sick and so therapy was cancelled. She has slept well last night so all will be good today.
Lately she has been a giggle-pot again ... big time! (Could be the Risperdal ....) ... It's very nice though.
Bed-time ....
Strange day ... she had an anxiety attack at the end of the therapy session and a trip to the "Boost" shop was in order. This soon fixed the anxiety. (In future times we will have to carefully manage her .... when she realises that the anxiety behaviour can be a powerful tool to get what she wants! At present it is genuine anxiety ... but the time will come ....)
Nandos for tea ... Kaylia loves her Nandos! (So do we.)
Lately she has been a giggle-pot again ... big time! (Could be the Risperdal ....) ... It's very nice though.
Bed-time ....
Strange day ... she had an anxiety attack at the end of the therapy session and a trip to the "Boost" shop was in order. This soon fixed the anxiety. (In future times we will have to carefully manage her .... when she realises that the anxiety behaviour can be a powerful tool to get what she wants! At present it is genuine anxiety ... but the time will come ....)
Nandos for tea ... Kaylia loves her Nandos! (So do we.)
Monday, August 29, 2011
#359 Monday 29 August
The moon has gone and messed up the Risperdal experiment!
As you know, we have established that there is a clear link between the phases of the moon and Kaylia's behaviour ...... last night was a good example! The new moon is at 11:40am today ... and Kaylia has been awake since 2am! She was in fine noisy form the whole time. (Wot a nite!)
This means that we cannot say that the behaviour change is due to the reduced dose of Risperdal. It may have been a contributing factor but it's not clear. We'll have to watch a bit longer.
She will probably have a hard time in therapy today.
As you know, we have established that there is a clear link between the phases of the moon and Kaylia's behaviour ...... last night was a good example! The new moon is at 11:40am today ... and Kaylia has been awake since 2am! She was in fine noisy form the whole time. (Wot a nite!)
This means that we cannot say that the behaviour change is due to the reduced dose of Risperdal. It may have been a contributing factor but it's not clear. We'll have to watch a bit longer.
She will probably have a hard time in therapy today.
Sunday, August 28, 2011
#358 Sunday 28 August
Last night was a Ward family gathering .... we have 3 family birthdays close together so we have a combined celebration. It was at Mim & Steve's new house ..... and we had a very interesting reaction from Kaylia! Something about the house obviously appealed to her and she was so excited and pleased .... she was running all round and we could hear her saying ".... happy! .... happy!" It may have been the tiled floor .... straight lines and lots of reflections ..... or it may have been the mirror at the end of the passage way ..... whatever it was, she really liked it! It was a good night.
I did take photos to include in the blog ... but the rest of the story is that I had a badly crashed iPhone last night ... and I lost all my recent photos! As well as all my contacts and a lot of other stuff. I've been in misery land today trying to sort it all out. (A trip to Bunnings to use my birthday vouchers helped the recovery though.)
The reduction in Risperdal seems to be causing a clear behaviour change .... much more stimmy behaviour and excitability. We will leave the dose at 0.5ml for now and see how it affects learning situations at school and in therapy. At this stage, it looks as though she may still need the Risperdal.
We have stopped using the Melatonin at night ... she seems to be coping quite well .... she has such strong routines that the routine is serving the same function as the Melatonin!
I did take photos to include in the blog ... but the rest of the story is that I had a badly crashed iPhone last night ... and I lost all my recent photos! As well as all my contacts and a lot of other stuff. I've been in misery land today trying to sort it all out. (A trip to Bunnings to use my birthday vouchers helped the recovery though.)
The reduction in Risperdal seems to be causing a clear behaviour change .... much more stimmy behaviour and excitability. We will leave the dose at 0.5ml for now and see how it affects learning situations at school and in therapy. At this stage, it looks as though she may still need the Risperdal.
We have stopped using the Melatonin at night ... she seems to be coping quite well .... she has such strong routines that the routine is serving the same function as the Melatonin!
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