Just a few quick pics of Sam's birthday.
On Monday he had all day at Starship having an iron infusion and a medicine review - they've restarted Omeprazole and increased the doses of his 2 other meds as Sam is getting heavier so needs more. The Omeprazole is to help with reflux/vomiting which is an increasing phenomenon which must be wholly unpleasant for Sam. He grinds his teeth and screws up his face afterwards, as he doesn't have the ability or desire to swirl a mouthful of water around, so it must taste disgusting.
He weighed in at 11.8 kg and 84 cms, so they may reduce the calories in his TPN as he is getting rather 'chunky'. He is also really truly two now, as is hitting and tantrums are becoming more of a reality, so his little face crumples into the saddest thing you've ever seen when he hears the dreaded NO word! We continue to try to get him in his standing frame for longer each day so he can get stronger and hopefully think about walking - it is becoming an increasing challenge to have to carry him everywhere and my back is starting to complain.
With the move we have moved hospital catchments as well, so we are still waiting to hear from our community based services such as physio, stoma nurse, OT etc, but will be chasing that up this week, as they're all important cogs in Sam's wheel.