Thursday, February 9, 2012

Sleep Finished.

I know that I often see a lot more potential in my child than other people. I consider her to be incredibly smart. Even if her abilities have been doubted. They see a little girl who cannot walk or talk, I see a miracle who needs no words.

But every now and then she pulls something out of her hat that truly surprises even me.

A couple of weeks ago she was watching Dora the Explorer with her Squeaky Sister and when they started singing the alphabet song (A, B, C, D, E, F, G) she was doing the hand signs for Twinkle Twinkle Little Star.

If you have no idea why that's clever, sing the two of them and maybe you'll figure it out! ;)

Today though, today was priceless. This morning, sitting in the Day Procedure Ward waiting to go for her radiation, she tried to use applied logic and reasoning on me!

Now, this is a child who cannot talk, and who, because of severe muscle contractures and spasticity in her limbs, uses very limited signs and noises to communicate with the outside world.

She was signing to me to tell me that she was hungry. Two signs, one for time, one for food. The meaning was simple, it was time for food.

Because she was being fasted for her anesthetic, I couldn't feed her, so I was trying to explain that she couldn't eat yet, she had to wait until after her radiation, after we did our big walk to the other hospital.

Every time I tried to explain something to her, she would just shake her head and make her sound for no.

Finally, she held her hand up telling me to stop, so I stopped and asked her what was wrong. She signed to me, 'sleep'.

I said "Sleep? No, Sleep is finished Nicola."

She made her sound for yes and nodded her head, then she signed 'sleep' followed by 'finished'.

"Yes, sleep is finished."

She again signs 'sleep' and 'finished', followed this time by 'time' and 'food'.

Her logic was really very simple to understand.

Sleep is finished, now it is time for food.

She is getting to be more and more aware of her surroundings of what is going on, but she still has massive trust issues with medical staff. When it's time for her to have her obs done, she will allow me to do them, she will even turn them into some kind of a game, but she will not let the nurses touch her. There are a few exceptions to that rule, but in general she just has massive trust problems with the medical staff.

She seems to be finding it emotionally very difficult to be down here, and to be separated from the rest of her family, or at least, from the most important part of her family, her Squeaky Sister.

Last night she cried and fussed until 1am, when, with the help of some good quality medications, she finally fell into a restless sleep, which ended around 4am when the medication wore off.

After that, her signs were abundantly clear.

'More Dadda'

'More Sisters'

'More Squeaky'

We were told today that it seems we can get into family accommodation as of next week (cross fingers and toes!) which will be brilliant because if we can make the finances work out, it means we can bring the rest of the family down and be together down here while Nicola is doing her treatment, something that I think will benefit them all hugely! It will be good for Jessica and Isabella to see that Nicola is coming home every night and she really is okay, and it will be wonderful for Nicola to have her sisters around for company and play!

Not to mention the fact that it will be good for me to have the rest of them here, for both company and cuddles!

I am discovering it is very lonely being down here alone and it is so incredibly stressful not getting any kind of break from Nicola. At least at home Michael could take her for an hour or two and barricade the girls to the other end of the house so I could get at least a little sleep, here that just doesn't happen, she is always within arms reach, always cranky and sleep deprivation is already starting to set in.

Caffeine is my friend!!!

Tomorrow is her last treatment for the week which means her lines are taken out over the weekend so we can get some down time. I am silently praying for lots and lots of sleep, but hoping that we will at least get enough of a break that we can duck off to the shops and get away from the hospital environment for a while.

It will be good for both of us to have some 'normal time'.

Or, at least, as normal as we can get!

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