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By @enablingevie, Sep 20 2012 10:42AM

Drama seems to be the buzz word :(

Last week - we had another big meeting. I know my mum and dad are feeling very frustrated at the chaos that seems to be my care. Over 20 people in the room and nothing really positive to say :( when will someone see that my care needs co ordinating by a professional in neuro disability?? My tube was playing up a bit again- I felt so yucky that even mummy rocking me didn't seem to work its usual magic. Then some indicator to why I felt rubbish- Thursday morning my tummy was full of milk. That may sound like good news to some- but my milk isn't supposed to go into my tummy- it needs to go into my intestine. This was terrible timing as mummy and daddy were going away for a couple of nights to get a break. Visit to a&e and then to gosh to be told nothing could happen that day or night but I had to go home and go back to gosh on friday :( Friday came and by4pm I had been seen and was home and grumpy. Mummy and daddy went - a day late but still was some alone time they needed. I had a couple of nights with Nanny Laura and her friend Leona. And then Auntie Jodie and Auntie Anna on Saturday with Nanny Laura. Girls nights all round - minus the sleep- sorry girls!! Mummy and daddy returned home Sunday and the start of the crazy week that has been this one :(

Monday morning with the nurses and bad times called again- my tube came right out as it wasn't done up tight enough and so it pulled right out of my intestine, which meant I couldn't have any milk or drugs. Mummy was very angry as she spent 5 hours ringing doctors last Thursday to try to get them to fix it and now it was broken again......*big sigh* A lovely lady came round and fixed up my tube so I could have water overnight. Mummy didn't let them put needles in me or a yucky tube down my nose as she wanted them to think how this could be avoided and luckily- it was due to some out the box thinking!

Tuesday I was supposed to be going to the Bobath Centre for an assessment for therapy but instead- mummy, Jodie and I spent the day in gosh waiting for my tube to be put back in. Had to have a general anaesthetic as they couldn't get it in the first time. Home for a bath and then up on Wednesday to the Royal London for my latest scan of my tumours. Sleepy, grumpy, uncomfortable and exhausted- mummy, daddy and I head up to the hospital with every finger and toe crossed for some good news. Well I must have missed a couple out as they couldn't give us good news:( the tumour in my left eye (the one where I had some chance of seeing from) has grown :( this means that is hasn't responded the way it needed to,to the yucky chemo I had. Naughty tumour :( I'm not sure how much more sad news mummy and daddy can take. I really want to hear them laugh. Their tears sound painful and I don't want them to hurt. They are good people. Life just doesn't seem to be fair :(

Have to wait 3 weeks before they scan again and then decision time :(

This world is a tough place to be :(

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