Saturday 1st November
Today was a very busy day indeed. Firstly Grandma R came to see me in the morning, I had arranged to meet her at 12:00, but she was so excited to see me she arrived about 11:00 - typical. Luckily I was already dressed and accepting visitors. After that Dr Roper came back to see me, but I think she was mainly interested in talking to Mum and Dad. She told Mum and Dad that she had the results of my muscle biopsy already, which is much sooner than expected. It turns out I am suffering from a disorder called Myotubular Myopathy, which means nothing to me and even less to Mum and Dad. Anyway, Dr Roper explained it all and it went something like this:
Myotubular Myopathy is a very rare genetic disorder, which effects the muscles of newborn babies. It mainly effects boys rather than girls because it is caused by an abnormality normality found on the X chromosome and as girls have two X chromosomes (and boys have one X and one Y), girls normally suffer less because the second X chromosome does not have the same abnormality. Anyway, the problem is that my muscles stopped developing correctly a very long time ago (when I was in Mummy’s tummy) so they look like they are the muscles of a very small foetus. This means that my muscles are not strong enough for me to breath on my own and apparently they won’t get better and there is no treatment they can give me.
Mum and Dad seemed to be very upset by this news, because they don’t know what to do to make it better. I’m don’t know what all the fuss is about because I am perfectly comfortable where I am. I get a nice warm bed, 24 meals a day, cuddles with Mum and Dad and my nappy changed as often as I want, but you just can’t please Mum and Dad.
Anyway, after the chat with Dr Roper every man and his dog (well not actually his dog, they are not allowed into the hospital) came to see me. I saw, in no particular order:
Grandma and Granddad C, Grandma and Granddad R, Uncle Tony and Auntie Kate, Uncle Jonny, Auntie Claire, Auntie Sarah and Uncle Steve. They were all very nice if not particularly smiley (they all sat and cried a lot), but by 7pm I was knackered .
At midnight I had a nice long cuddle with Dad and they gave me a nice new outfit to wear. Although I’m not sure bunnies are really me, it’s far better than being naked - especially if I’m to keep getting lots of visitors.
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