got the new backpack

Ben's new backpack arrived today. I'd spoken to the gosh dietiican on friday and she had initally suggested taking Ben off the little solid food he is eating for a while. Said we were reluctant to do that without discussion with his consultant. We compromised with putting him on his feed during the day to try and get some more calories in him.

The backpack we had is about two thirds his height and he toppled over as soon as we put in on him empty let alone with any feed in it. Fresenius sent out a mini one and he used it for the first time today. Better than me walking around with the larger one as I have the last few days but he wasn't too happy to begin with. The bigger one is better for going out as it hooks on the pushchair and take a larger volume of feed.

I am thoroughly fed up with conflicting/useless advice from the dieticians. Not going to bother seeing them when we go to gos next. Bottom line is work it out for yourself. I don't expect them rememeber everything about all their patients but when I worked in the NHS I would read the last couple of enteries in the notes before ringing a patient. I wasn't happy to be repeating myself from last friday and I clearly told her we'd been advised not to try new foods yet she was suggesting we did and making me feel like I should be. Not got a clue!

The steroids aren't really doing a lot and it feels like we aren't really getting anywhere and are worse off than we were a year ago. Hey ho, there are a lot worse off than us.

Moan over!

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