Good news is he's up to 28ml/hr of pepti junior into his GJ tube and on Monday if he's still ok with it they will pop him up to 31ml/hr.
He didn't have a day off TPN this week as his sodium levels and electrolytes are really high, due to having so many abx infusions that are diluted with 50 mls of saline....so his kidneys need as much flushing as they can get, plus they are now diluting his abx with dextrose. Once his levels are back to normal they will try the day off TPN again.
His standing frame is a hit! He's been in it 2 days now, although he whimpers when he sees it as he doesn't like being placed in it. We'll take some photos to help explain it, but he is put in it lying down, strapped in and then tipped upright. Once he's upright he's squealing with delight. We are hoping this will make a huge difference to his life - bones to strengthen, everything to drain better, muscles strengthen and for his world to open up. It was so lovely to see him checking out the world from a different perspective. His legs are strapped in so his legs don't move, but his hips and knees are taking the weight and this is what needs to be strengthened if we want him to walk.
I'm off to try get some sleep before the next helicopter lands and wakes us up.