I've had go back to using "missiles" .... Oxycodone. Great stuff ... it puts me to sleep and I wonder where the time goes! Hard to think though.
Saturday, May 28, 2011
Friday, May 27, 2011
#269 Friday 27 May
Its past midnight and I've been struggling with wrist for hours ... It's swollen right up again ... Nomi needs sleep and I don't think there's much can be done other than keep it elevated. At this point being knocked out is an attractive idea but even that has problems .... I have lots of discomfort from gas as my tummy tries to get back in action after its shutdown on Tuesday.
It's going to be a long night!
Each time I try to sleep I feel as though I'm hallucinating .... drugs! The pain meds have me on the verge of la-la land ... I'm sitting up now cos if i try to sleep it feels like I'm hallucinating. .... but the wrist feels better sitting up too. Might have a coffee.
Did I tell you about my coffee?.......
6:30am .... made it! I finally slept about 3am. My fingers are painfully swollen and tight.
Th night only gets about a score of 7/10 when I think of the tummy op in April 2008.... but it doesn't help much when you're in the thick of it. As soon as Naomi was awake I got help to remove the splint and it feels much better now. I'll use one of the softer splints for a little while till the swelling goes down.
I noticed this light pattern projected onto the wall by the bedside lamp ... Gorgeous! (or is that the drugs talking?)
Please excuse my detailed rambling .... I use the blog as a record of what is happening ... 24 hours after the event and things get blurry.
At least Kaylia (and Naomi) slept well!
It's going to be a long night!
Each time I try to sleep I feel as though I'm hallucinating .... drugs! The pain meds have me on the verge of la-la land ... I'm sitting up now cos if i try to sleep it feels like I'm hallucinating. .... but the wrist feels better sitting up too. Might have a coffee.
Did I tell you about my coffee?.......
6:30am .... made it! I finally slept about 3am. My fingers are painfully swollen and tight.
Th night only gets about a score of 7/10 when I think of the tummy op in April 2008.... but it doesn't help much when you're in the thick of it. As soon as Naomi was awake I got help to remove the splint and it feels much better now. I'll use one of the softer splints for a little while till the swelling goes down.
I noticed this light pattern projected onto the wall by the bedside lamp ... Gorgeous! (or is that the drugs talking?)
Please excuse my detailed rambling .... I use the blog as a record of what is happening ... 24 hours after the event and things get blurry.
At least Kaylia (and Naomi) slept well!
Thursday, May 26, 2011
#268 Thursday 26 May
Yesterday's brevity was a comment on my condition ... it's hard to keep a thought going. I've reduced from missiles to artillery (in the painkillers) but it still hurts. Not the actual wound ... It's all the finger muscles ... I must work them to regain movement ... but each one hurts ... and there are lots.
My nice new red splint!
Kaylia is messed up ... she can't understand why I'm not snuggling her at bedtime. She literally slept 3 hours last night. She's still asleep now.
My nice new red splint!
Kaylia is messed up ... she can't understand why I'm not snuggling her at bedtime. She literally slept 3 hours last night. She's still asleep now.
Wednesday, May 25, 2011
Tuesday, May 24, 2011
#266 Tuesday 24 May 2011
It's 2:30am this time ...... another wet bed and a sleepless night. She's gone downstairs to the "big DVD" ..... while I contemplate the surgery that is to happen in a few hours.
I feel like having a coffee but that's not allowed at this stage.
I've set myself up so that I can continue this blog one handed for a while .... I have a holder for the iPhone so that I can function with the left hand. (Sorry .... you don't get a break from my ramblings!) I don't really have a clear idea of what I will be able to do for the next few days / weeks ... but there are things which must be done so I'll have to work it out!
Remember I told you of a play-date that Kaylia had with a friend over the school holidays? ..... I'd commented on my reaction to being able to hold a real conversation with the friend ..... I had a similar experience on the weekend ..... talking to another young child. These are the times I find hard ... Kaylia struggles to communicate the basic things that she needs to .... to form the words needed for a conversation about abstract concepts is just too hard at present. I think the thoughts are there at times .... but she cannot express them. She is trapped within herself.
If she could write the words? .... That would be great! .... but the stimming is like having your legs tied in a running race .... my concept is that for a child to learn skills (such as writing) to the level that they can express abstract thoughts, they need to have undisturbed, quiet thinking time. I think that Kaylia never gets the chance! I think for her it's like the difference between lying on a towel on a a calm sunny day ... versus standing outside in a loud thunderstorm! She is constantly assaulted by internal noise, distraction, disruption .... she never gets a chance to calmly think about the wiggly shapes on paper can actually mean something .... or how you need to hold the pencil just so ....
This is what I hope the Risperdal helps her with. Unfortunately it only makes about a 25% difference ... Kaylia still has a huge battle every moment of the day.
I feel like having a coffee but that's not allowed at this stage.
I've set myself up so that I can continue this blog one handed for a while .... I have a holder for the iPhone so that I can function with the left hand. (Sorry .... you don't get a break from my ramblings!) I don't really have a clear idea of what I will be able to do for the next few days / weeks ... but there are things which must be done so I'll have to work it out!
Remember I told you of a play-date that Kaylia had with a friend over the school holidays? ..... I'd commented on my reaction to being able to hold a real conversation with the friend ..... I had a similar experience on the weekend ..... talking to another young child. These are the times I find hard ... Kaylia struggles to communicate the basic things that she needs to .... to form the words needed for a conversation about abstract concepts is just too hard at present. I think the thoughts are there at times .... but she cannot express them. She is trapped within herself.
If she could write the words? .... That would be great! .... but the stimming is like having your legs tied in a running race .... my concept is that for a child to learn skills (such as writing) to the level that they can express abstract thoughts, they need to have undisturbed, quiet thinking time. I think that Kaylia never gets the chance! I think for her it's like the difference between lying on a towel on a a calm sunny day ... versus standing outside in a loud thunderstorm! She is constantly assaulted by internal noise, distraction, disruption .... she never gets a chance to calmly think about the wiggly shapes on paper can actually mean something .... or how you need to hold the pencil just so ....
This is what I hope the Risperdal helps her with. Unfortunately it only makes about a 25% difference ... Kaylia still has a huge battle every moment of the day.
Monday, May 23, 2011
#265 Monday 23 May 2011
Hi all
24 hours to go ... (to what? "The Wrist")
Kaylia is happy. I was discussing Kaylia with a friend the other day and saying that even if she didn't go any further with her development, the way she is now she'd still be a very nice person. We can hope for more .... but that would be enough.
Some time ago Naomi & I were discussing an idea of working toward developing a purpose-built home for Kaylia's adult life .... it would have separate areas for her and one or two others .... it would be quiet .... it would have space for a full-time carer ..... it sounds just like the villa in Bali! I wonder .....
24 hours to go ... (to what? "The Wrist")
Kaylia is happy. I was discussing Kaylia with a friend the other day and saying that even if she didn't go any further with her development, the way she is now she'd still be a very nice person. We can hope for more .... but that would be enough.
Some time ago Naomi & I were discussing an idea of working toward developing a purpose-built home for Kaylia's adult life .... it would have separate areas for her and one or two others .... it would be quiet .... it would have space for a full-time carer ..... it sounds just like the villa in Bali! I wonder .....
Sunday, May 22, 2011
#264 Sunday 22 May 2011
The 'nagging' problem seems to be improving .... our management tactics have been "no response/reward" plus "time out after 3". The time out has taken on a joke flavor .... As soon as we start the count, she'll continue it in a tone of exasperation!
... and then last night the blankets on the bed were in a mess .... so Naomi put them back on one at a time .... counting "1, 2, 3". Kaylia thought it was a great joke and we all had a laugh! She has a very good sense of humour.
This is Kaylia in her 'nappy' session at the shop .... reminding herself of the creams etc that she used to use in the days of nappy wearing.
Evening:
You are fortunate that this blog doesn't allow you to listen in to our household ...... the music that Kaylia has on at the moment is truly atrocious! Imagine the worst 'new age' weird music .... that would be much better than the children's DVD she has on at present!
... and then last night the blankets on the bed were in a mess .... so Naomi put them back on one at a time .... counting "1, 2, 3". Kaylia thought it was a great joke and we all had a laugh! She has a very good sense of humour.
This is Kaylia in her 'nappy' session at the shop .... reminding herself of the creams etc that she used to use in the days of nappy wearing.
Evening:
You are fortunate that this blog doesn't allow you to listen in to our household ...... the music that Kaylia has on at the moment is truly atrocious! Imagine the worst 'new age' weird music .... that would be much better than the children's DVD she has on at present!
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