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By @enablingevie, Aug 9 2012 08:27AM

Nothing is ever straightfo​rward!!!! It's been such a tough month for me and mum and dad. I know that we're all waiting for the day when something feels right! Soooo after an exhausting meeting in my last blog- we were quickly given an op date for my peg j tube - a feeding tube to go into my tummy with an extension into my intestine and be pushed through my tummy wall so I don't gave to be fed down my nose anymore. 2 general anaestheti​cs later with 2 separate operations​- a 9 day stay in gosh and it's in place. Never simple- those 9 days were exhausting​. I can't even remember how long mum and I went without sleep in there but I was in too much discomfort to sleep. Now mum and I are home with dad but the site (on my tummy where the tube goes in) is very sore and has become slightly ulcerated. It's tricky to keep clean and dry!! The tube is also too big for me as they don't have smaller ones. This means it hangs down to my knees and scratches my thighs a lot. It mustn't move too much too or the site gets sore and infected..​.. But I'm just a baby and i can't control my bodies movements because of my hurty brain so its not easy to "stay still"! It also means that my mummy and daddy have to do the work of my tummy for me. As the tube is too big outside my body it's also too big inside so my tummy needs help getting rid of the acid it makes. Mum and dad have to syringe this out :( Not something they were prepared or informed they would need to do :( so right now this tube isn't making me much happier. I feel a bit stronger and my nappy size has gone up although it seems to cover my whole body!! I'm still on lots of yucky medicine- my mum tells me when she was little medicine used to taste yummy like bananas but I don't know what taste is like!! I had my examinatio​n today under anaestheti​c to see what activity is happening with the horrid tumours. Chemo course has finished but the dreaded c is still active and the tumours still present. The examinatio​n has shown the tumours are 'stable'. So for now we have to wait and see.Next scan will be in 6 weeks. People keep talking about the silver lining.... Feels like the cloud over me and my mum and dad has had its lining stolen for the time being- I hope someone finds it soon xx

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