Friday, 16 December 2016

Christmas 2016

Today I have been thinking about Christmas 2013 when Lucy was fitted with her first halo. We had a real Christmas Angel that year.

This year it's amazing to see how far she has come. Her neck is strong and she rarely gets any pain now.

Lucy has had some trouble settling at school but she's trying real hard. She loves some lessons, especially music and drama, and others she hates. That's quite normal though isn't it. She particularly loves Band Musicianship which is something her school does, in fact it's the only school in the UK that does it. The kids are allowed access to all sorts of instruments, guitars, drums, pianos and so on, and they form bands and practice together in sound proof rooms. The teachers give very little input and leave the kids to be creative. We went to see all of the year 7 bands perform last week and they were great. Not perfect, but still great because you could see how much they all loved  what they were doing. Lucy's band did Adele's 'Hello' and Lucy was one of the two singers. I've heard her sing this song at home and she does it beautifully, however, on the stage she was nervous and shy and didn't belt it out like she used to.

We have decided not to give Lucy the Melatonin, it doesn't stop her from waking up early which is the main problem. We don't really want her relying on drugs to get her to go to sleep as it could become permanent. Also, after the first dose she was feeling sick the next day so we decided not to continue.

The psychologist also suggested giving her Movicol every day, but we already have enough problems and I don't believe that Movicol is the answer to any of them, but more of an added worry.

I'm picking her up from school at lunch time today, she's had difficulty keeping up with all the changes at school in the last week. I know most of the kids are hyper and excited and the school has taken this into consideration and they've had a week where the normal hard work has been put to one side and they've been learning through fun instead. Lucy has had fun but she's been left feeling confused and stressed because of all the changes.

After today she will not have to worry about school until next year, so we will be getting into the Christmas spirit.


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