Journey

The RM House School is closed, and Starship is closed to siblings, so Colt has a lot of time on his hands while Rory is in Starship.  We are confined to two rooms at RM House so it would be easy for Colt to be almost permanently glued to a screen of some kind to pass the time, ipad, tv, Nintendo.  Colt thrives on being in motion like Sean and I so we take him out for long walks with us, one in the morning, one in the afternoon.  We re-visit our favourite places and discover new ones.  Yesterday it was Sentinel Beach, one of the Herne Bay beaches.  It was sunny and warm so Colt even had a quick dip and built a pool in the sand on the waters edge.  Most days I encourage him to write a short blog for his teacher Mrs Krook about his experiences.  Today it was about Paul X Walsh, Auckland based mural and graffiti artist www.paulwalsh.co.nz .  We have been spotting his awesome utility box art on our walks around Auckland. 

Rory is on Day 5 of this dose of methotrexate.  At 72 hours (yesterday afternoon) his methotrexate level was 0.16 so we missed the target of 0.1 for discharge (again).  The target now drops to 0.08.  I do not expect the blood result this afternoon to be low enough either.  His weight continued to balloon to 3.6kgs heavier than on Monday so Rory received furosemide three times yesterday and early this morning.  It was good to hear his weight had returned to normal by mid-morning so he will now only require one dose this afternoon.  His system is struggling to expel the 8kg of fluid he receives every day.  Sean stayed the night last night and it was rough.  The uridome failed twice and the pump alarm went off regularly due to bubbles in the IV line.  The bubbles are caused by the sodium bicarbonate in the fluid.   As Rory is deaf at night it means one of us must get out of bed and push the nurse buzzer.