10 May 2012

New feeding tube in

After a couple of phone calls and a very helpful Karen at the Day Ward on Piam Brown, one of the community nurses came out today and replaced Paige's temporary tube with a new one, fingers crossed that this one will last three months as it is intended to do and who knows....maybe we won't need a replacement after this one :-). to be on the safe side however I have in my possession a spare tube in the event of another accident.

It's taking quite a lot of getting used to having an extremely vocal Paige who is up to mischief all day long, but I have to admit that I am loving every single minute of it. She has clearly been listening and storing everything that we've been saying to her and she repeats it now. Her sentence construction is amazing, Russell and I both agree that she is more coherent that Sam was at this age. We were advised that she could have developmental delays due to treatment but and I am so pleased to report that we do not see any evidence of that based on our own subjective opinions...of course. Every mum thinks that their child is a genius and I am no exception I think that Paige is clever beyond her months.

So for now we are relishing in the fact that Paige continues to look fabulous and hope that her neutrophils recover enough by next week Monday so that she can resume her or rather start her oral chemotherapy. She has now missed two rounds of oral chemo as she was due to start on March 26th but hasn't had the required neutophil count of 0.75 to begin chemotherapy.

We will attend the first of Dr Beattie, her gastroenterologist's outpatient clinic on Monday next week and hopefully her soya ban will be lifted and she can begin to enjoy her puddings and chocolate milk again. I am also working very closely with her new nutritionist Jo Gamble to make sure that the gut is healed and reduce to amount of toxins that we put into her body.

Tonight we are extremely thankful that Paige is recovering so well. We have just learned that one of the little girls who was diagnosed soon after Paige is just recovering from Pneumonia, a collapsed lung, coma, and life support all over the last 5 long days for little May, who is only 14 months old . Please say an extra prayer for her and her family.

Good night to all.

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