Such a Princess

So this is where my princess sleeps, her room is all pretty and her bed is like any little girls dream, different shades of pink and purple full of butter flies and love hearts and of course the odd flower, what girl doesn't like flowers. 


Her matteres was specially made for her by the sleep clinic as she cant lay down flat as it makes her reflux play up and gives her head ache, So she had the wonderful mattress made and got a lovely temperature controlled sheet to keep it perfect for her all night. This was all done to help her sleep better,  but do you think it has of course not little monkey prefers to sit up most of the night cuddling mummy and then spend her days being so tired and exhausted she can barely function. Why? cause she is five and she figures she can, I guess. 


After coming home from school early yesterday Mikenzee was pretty tired and ratty all afternoon complaining of her belly being sore and touching her side, where here tube tunnels through to her small bowel, I had noticed over the past few weeks and in particular the last few days that her abdominal fistula was closing over, as the out put had decreased, I assumed that this could only be a good thing, this morning i see that it may not be a good thing as she has now sprung a new leak around her J tube, filling up her dressing with bile, making all the skin red raw and making it hard for the tape that hold the tube in place to stick and do its job. Is this a bad thing i don't really know will have to see what the Dr has to say about it, is it a good thing I'm thinking likely not. Mikenzee for one is not keen she keeps grabbing her belly saying "tummy hurt" and grabbing her side and rubbing it like its annoying her. 


Either way its going to be a quiet day for Mikenzee and I including lots of play dough, and reading and of course her favourite, My least favourite cartoon, Special Agent Oso. I am sure Mikenzee knows i can not stand it hence why she wants to watch it none stop. The advantage I have is that she has yet to figure out how the foxtel remote actually works.