Chickenpox! She was sent home from school with suspicions and these were confirmed by the doctor next day .... poor thing .... she is very tired, irritable and itchy in all the worst places! Today she has been obsessing on jelly ..... most of the day, it has been a chorus of 'I want jelly!' It has been driving us mad 'cos jelly takes time to make .... and she can't grasp that idea. She wants it NOW!
Three weeks to Bali ... we feel moderately confident .... I think we have a good control of the medication and we'll be much better prepared this time. Fingers crossed.
An interesting snippet ..... for some strange reason, Kaylia is fascinated by just one of Tina Arena's songs ... I had put "Je m'apelle Bagdad" on the iPod .... and she watches it over & over. She's not very interested in any other Tina Arena songs ... just that one. Go figure!
Sunday, July 25, 2010
Thursday, July 22, 2010
#37 Thursday 22nd July 2010
The recent nights have been better but spoilt by Kaylia having a heavy cough ... this wakes her up and then she doesn't sleep again. I've been keeping score by assigning a +1 or -1 to the night ... so far the total score is positive! (Funny - it doesn't feel that way.)
Today I took Kaylia to have a photo taken for her passport renewal .... and of course she wouldn't sit still for it. The result is less than perfect and we have to add a note that "this is as good as you're going to get from an auty one!" This passport is for our battery re-charge trip booked for 3 weeks time - a week next to the swimming pool in Bali. Of course we have all fingers crossed that we won't have the same problems as we did in December. We will have a full stock of medications and batteries for the iPods!
Today I took Kaylia to have a photo taken for her passport renewal .... and of course she wouldn't sit still for it. The result is less than perfect and we have to add a note that "this is as good as you're going to get from an auty one!" This passport is for our battery re-charge trip booked for 3 weeks time - a week next to the swimming pool in Bali. Of course we have all fingers crossed that we won't have the same problems as we did in December. We will have a full stock of medications and batteries for the iPods!
Monday, July 19, 2010
#36 Monday 19th July 2010
Saturday night was bliss! For various reasons, we had let her start the night upstairs .... she was very tired and she slept right throught the whole night! Then Sunday night was bad again .... she woke up thoroughly at around 2am and wouldn't settle .... she spent the next 3 hours playing in her room.
The practicalities of adult survival are definitely interfering with the management of the sleep problem!
Medication seems to be about right at present .... 0.4ml Risperdal plus 18mg Lovan .... she is still a little bit stimmy but acceptable ... and she doesn't seem to be having any headaches .
We had a little 'sweet spot' on Friday .... Kaylia had spent the morning at Kym's and when told (as she was leaving to go home) ... "I'll see you on Tuesday." .... Kaylia responded .... "I want Tuesday!"
The practicalities of adult survival are definitely interfering with the management of the sleep problem!
Medication seems to be about right at present .... 0.4ml Risperdal plus 18mg Lovan .... she is still a little bit stimmy but acceptable ... and she doesn't seem to be having any headaches .
We had a little 'sweet spot' on Friday .... Kaylia had spent the morning at Kym's and when told (as she was leaving to go home) ... "I'll see you on Tuesday." .... Kaylia responded .... "I want Tuesday!"
Thursday, July 15, 2010
#35 Thursday 15th July 2010
Times has got away from me!.... Since Saturday, we have had a series of good nights followed by a bad one last night. The reason for the good nights was a bit of cheating ... Naomi has not been well and so I slept downstairs with Kaylia .... the idea is to keep her in her own bed rather than going upstairs in the middle of the night. Kaylia has responded well to this ... she still wakes up but she just reads quietly and watches a DVD for a couple of hours. I can still doze through this and it means that Naomi can have some quality sleep.
We are no where near solving this sleep problem .... in some ways, its becoming less important that we solve it .... I'm so tired that I barely wake up for these sessions and in the morning, I struggle to remember what happened!
We are no where near solving this sleep problem .... in some ways, its becoming less important that we solve it .... I'm so tired that I barely wake up for these sessions and in the morning, I struggle to remember what happened!
Saturday, July 10, 2010
#34 Saturday 10th July 2010
These bad nights are getting monotonous! Thursday and Friday were both bad nights (after a couple of good nights). Last night was another one where she was so wired that once she woke (at 2am) she just stayed awake. She spends the night reading her books and watching DVD's. Some positives are that she is responding to the 1-2-3 warnings and modifying her behaviour. She also was very responsive to having the 'program' for the night explained. We just need to work out what it is that is 'winding her up'.
It could be not enough medication ... or too much medication .... or going to bed too early ... or temperature regulation .... or external noises (rain / airconditioners).
We're going for a car drive today .... to Hyden to see Wave Rock.
It could be not enough medication ... or too much medication .... or going to bed too early ... or temperature regulation .... or external noises (rain / airconditioners).
We're going for a car drive today .... to Hyden to see Wave Rock.
Wednesday, July 7, 2010
#33 Wednesday 7th July 2010
The sleep saga continues ..... Monday was bad night #5 ... followed by a really good Tuesday night! So far it is not clear what is making the difference. One small possibility last night was that she had had a rash during the day (which seems to be a reaction to a new nightie) and we'd given her an anti-histamine at bed time .... this may have made her a little more sleepy than usual. She hasn't had it tonight so we will wait and see.
The slight increase in Lovan (since Sunday) has made a reduction in 'stimmy' behaviour. It is possible that this has also made a difference to sleep .... less anxiety = better sleep?
It's school holiday time and Kaylia is enjoying her time .... today she spent the morning with Kym then the afternoon at Garvey Park with Linda & Anni.
The slight increase in Lovan (since Sunday) has made a reduction in 'stimmy' behaviour. It is possible that this has also made a difference to sleep .... less anxiety = better sleep?
It's school holiday time and Kaylia is enjoying her time .... today she spent the morning with Kym then the afternoon at Garvey Park with Linda & Anni.
Monday, July 5, 2010
#32 Monday 5th July 2010
She's done it again! Last night was another bad one ... this makes 4 in a row. We tried increasing the Melatonin but it had no effect. Fortunately its now school holidays so she can sleep in after a bad night. And after sleeping in she is always a really happy child.
I've had some lovely emails from people concerned about Kaylia being to cold at night ... and I realised that my writing has conveyed the wrong idea! The problem is not that she is too cold ... it is that she is too hot! So she kicks off the coverings in her sleep ... and I was wondering if she was waking because she then got cold after being too hot! She is really just like me ... she is like a natural hot-water bottle and if she has too many blankets, she overheats. She needs to sleep with light coverings ... apparently even less than me!
I've had some lovely emails from people concerned about Kaylia being to cold at night ... and I realised that my writing has conveyed the wrong idea! The problem is not that she is too cold ... it is that she is too hot! So she kicks off the coverings in her sleep ... and I was wondering if she was waking because she then got cold after being too hot! She is really just like me ... she is like a natural hot-water bottle and if she has too many blankets, she overheats. She needs to sleep with light coverings ... apparently even less than me!
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