#89 Saturday 30 October 2010

{The following is an email sent to a few and it was suggested that I put it on the blog}
Hi all, It's early morning and I've been cogitating the wristy future .....may I share my thoughts? The pain involved in yesterday's cortisone injection has changed my plans. After seeing the video of a SLAC operation and thinking about the results, I want to delay having the operation done as long as possible. The operation removes S & T (in the image) and then fuses C & L to the Ulnar ... the long arm bone ... it results in usable fingers but a degree of inflexibility in the wrist. According to websites etc, there is still some pain but reduced.
If I am to delay the SLAC operation, then I need the 'warning' pain that I normally have without the cortisone. Without cortisone, I can cope but it reminds me to change lifestyle, to avoid impacts, to use aids to open bottles etc .... anything which reduces the bone on bone movement I still have full flexibility and strength but with warning pain ... so I can avoid these actions ALAP [as long as possible] and still have that ability if really needed. The biggest issue is avoiding the impacts on wrist/hand ..... the ones that bring instant blinding pain. If I wear a wrist brace, then it warns me to take care and it warns other people not to touch. So the plan for now is to find the perfect wrist brace .... that I can wear all the time without restricting abilities too much.
A big part of these plans involves interests. My life pre Kaylia was in the shed .... K halted that but I thought the halt would be temporary. The SLAC wrist would have developed sooner if I were still in the shed .... Now, the future has changed and I need to find new interests. I think it will be down the technology road and this letter is an example of what can be done using an iPad .... it allows me to do stuff with minimal wrist movement as the absence of a mouse .... a nuisance .... also allows me to use just the fingers while keeping the wrist fairly immobile. [Thanks for listening to my news]

#88 Thursday 28th October 2010

You know, one of the hardest things to deal with is 'partial communication' ..... when she has enough language to know how to express her wants .... but not enough to understand delay ... or to understand that she can't have it. During the day, we're able to use to "no nagging" concept with time out after three .... but at night when you're half asleep ( and struggling to sleep again) it is very hard to use such tools.
At that time it becomes an endurance match .... who will last longest! Resentment is hard to avoid .... it is hard to remain in 'adult dealing with child' mode. I'm writing this at 5am after being awake since 2am. K has a sore tummy with the gastro and as a result she's wide awake.

We had a survey on the Federal autism early intervention assistance program yesterday ...(we were able to use it last year to pay for much of Kaylia's therapy ..... it was interesting to fill it in and tell them that it's a great idea ... just not enough .... that despite the assistance program, we still have to re-mortgage the house to pay for therapy ...
The problem is that the monetary benefits ( of solutions applied now ) don't occur till several terms of government have passed .... there's no short term political pay off! .... and democracy doesn't work for long term gain .... as we can see with the climate inaction!

Later (evening) Today I had a cortisone injection in my wrist .... it was one of the most painful things I have ever experienced. If it doesn't do wonderful things, it will be the last time I have one! The ultrasound done (while finding where to inject) showed that my wrist is a mess .... rough spots and bone spurs abound.

- Posted by the Kaylee Blogger

#87 Wednesday 27th October

Over the past few days, Kaylee has presented us with a new mystery ..... the absent appetite! At the start of last week, she reduced her food consumption. This was well before Ritalin was started ... so that is ruled out. It has reached the point that she is only eating 2 bananas during the day. She then eats some tea .... but her behavior has changed .... high anxiety etc ... and the behavior returns to normal if she eats. So my theory is that the behavior change is due to hunger pangs.
The mystery remains ... why has this happened? If she is constipated, it would explain all the symptoms plus some that we hadn't connected. (We took her to the doctor recently for suspected UTI - negative - but constipation can show the same symptoms.)
So she is now on Parachoc as well!

Unfortunately, it seems that it can take as long to correct constipation as the problem has existed .... I think she's had it for at least a month .... so she has to be treated for a month also.
Later:
Well, it ain't constipation! She came home early today with a touch of 'gastro' ...... quite happy ... but filling nappies at a great rate! Perhaps the changes in behaviour prior to today have been early signs of the tummy wog.

- Posted by the Kaylee Blogger

#86 Monday 25th October 2010

Kaylee seems to have 'got' the sleep thing .... last night was the 6th in a row and we're now planning on moving to the next stage. Keep you posted.

Today has been interesting / unusual ... over the past week, her apetite has decreased (she has lost some weight!) and today she had eaten nothing by end of school! The therapy session started with a highly anxious Kaylia ..... I made her a filling egg-flip milkshake and in minutes she was back to normal! It was hunger!

It's such a balancing act to manage our little girl ... interpreting behaviours and working out the whys and wherefores. If something goes wrong, it can happen quite quickly. Fortunately, when it does go wrong, if you find the right fix, then it can also be corrected fairly quickly.

Today was day 3 of Ritalin ... no effect can be seen yet. Today was also the first day of Kaylia having her own iPad at school. The plan is to ease into using it as a teaching tool. The teaching 'apps' need to have their data prepared and the teachers need to become familiar with the things that can be done with it. The iPad is really a new type of technology and it needs to be used in a completely different way.