Today Amy is 24!!!! This has been such a horrible year for all of us but I can only imagine how awful it has been for Amy. For those that don't know in Jan this year Amy's hole self change overnight. This is a long post so feel free to scroll on by....
Before.... Amy was happy and healthy her only issue was her vision which she coped with very well. She loved to dance and swim. Would spend way to long on her iPad and watched Pepper Pig, Barbie and Ninja shows on YouTube along with dance videos. Her favourite dance group is Diversity who she has met many times. She does not have a large family just her sister Sophie, my mum (nanny) and our five cats, we were about to adopt two kittens before this happened. Only friends are at her club. She would love to go shopping and to her club. Enjoyed days out pretty much anywhere and had an amazing memory. We would only need to go somewhere once and she would memory map it for future visits. Loved Miami and Florida Keys and also closer to home Brighton. She loved looking in the shops around the Lanes. Would eat most foods and loved to try new things. Loved life and her nickname was Evil Knievel as she was such a daredevil not afraid to do/try anything. She has a wicked sense of humour and was always making people laugh.
Average Day
First up in the morning about 7:30. Feed cats and bring her sister and I a cup of tea in bed. Would make and eat her breakfast (porridge with blueberries, tea, goat milk or fruit juice and often a banana. Once Sophie and I were up she would get dressed make her bed and clean her teeth. Then she would either watch TV, iPad or play in the garden if weather good. She would help Sophie put out the garden cushions and put them away at the end of the day. Swim in pool if good weather or maybe help with arty stuff. She would make tea throughout the day. Help with lunch and dinner. Wash up sometimes or wipe-up. She would nap in the car if we went out, Amy would go to bed about 8:30 after a busy day.
Now
Get up throughout the night, at first she would wander around but she does now go back to bed most of the time on her own. She would empty her wardrobe and pile things up behind doors. I now tell her/help her get up in the morning and tell/help her get dressed. Her sister makes her bed for her most days. Amy will sit in the living room while I make her tea, breakfast etc. When I have finished my breakfast I will feed Amy hers, on a good day she might have started eating but not a lot. It's like she forgets what she is doing and can no longer make her hand go to her mouth. She eats about half of what she used to eat. Sometimes we help with drinking too. Getting her to go to the toilet or clean her teeth can be a bit of a fight but most days she will do it in the end. She will only stand on certain coloured tiles in the bathroom. Needs help with wiping her bum if she has done a poop. She will go up to four days with no poop and a couple of days no wee. When washing her hands she washes like she is going to operate but can not wipe her hands afterwards without help. She has no understanding of her period and either her sister or I have to change her pads and keep her clean. Amy will maybe eat a small snake or yoghurt at lunch time with help. She spends most of her time looking at nothing, might be laughing or have the terrors and I will sit with her for as long as it lasts. Dinner will be half what it used to be and on a good day she might start to eat a small mouthful or two. When I have finished mine I will feed her. In the evening we watch TV, well her sister and I she is away with the fairies most of the time. Most evenings it's a bit of a thing getting Amy to go to bed, then again to get her to clean her teeth and go to the toilet. Sophie and I take it in turns to listen out for her throughout the night.
.....................
She is now on medication and we are starting to see an improvement, the old Amy has gone for ever but at least some of her is coming back.
Through all of this Amy has a doll called Twinnie (as she looks like Amy) This doll never ever leaves Amy's side, she goes to the toilet, eats, sleeps goes through machines in hospital everywhere. In the summer she even went in the pool! Because of this she needs the washing machine BUT Amy will not be parted so what could I do? Go on Evil Bay and find another one or two. So now we have Twinne, Twinne Twin and Twinne twin twin! As it's Amy's birthday they all came out to play.
Amy's birthday


Last year before she got DSRD

And Amy the doll



And a cake