Happy Birthday Sam

Sam Feb 2019

Happy 20th Birthday Sam for yesterday.  We missed being there to celebrate with you.  There was a lump in my throat when we video called you and sang happy birthday xox

If you asked the members of my family if I was patient I think their responses would vary widely.  Sometimes I have no patience at all but being a mother requires you to have infinite patience.  Rory and I struggle being confined to a cell on the ward.  Sean and I have brought our sons up in the wild, their lives have been spent walking.  As a family we are always doing something.  My best friend Tim says I don’t do relax.  On the ward you can only do so much of everything; watching tv, reading books, playing card games, and gaming.  The rest is waiting.  Time on the ward is not living.  It is treading water so you can start living when the timer goes off.  Rory’s Methotrexate level dropped over the weekend but he was devastated yesterday afternoon when it was still 0.14.  It needs to be 0.1 or less for discharge from the hospital.  A blood test at 4am this morning showed it was only at 0.12.  The Nurse said Rory’s pee also contained too much glucose.  Several finger pricks were in order to make sure it wasn’t getting any higher.  At breakfast Rory and I were both scratchy.  It is a lot harder to tread water with only the two of us.  The lack of sleep five nights in a row makes you tired.  This is coupled with a lack of space and privacy, boredom and too much of each other.  Our patience was wearing thin.  It normally takes 3 days to clear Methotrexate from your blood but Rory is a 4-day kid.  Some are longer.  At 11am we saw the Drs and they were prepared to discharge Rory with extra tablets on the proviso he drank lots of water.  They did another blood test to be sure it was still coming down.  Nurse Tracey text me this afternoon that it had been 0.08 so Rory was all good for discharge.  4 days and 16 hours after he was admitted Rory walked out. 

This afternoon we have been out walking in Auckland Domain.  Rory is very unsteady on his feet.  He is struggling to maintain his balance.  Walking is now a huge effort as he seems to be losing control of his legs and feet.  He mostly rides in the wheelchair.  I’m not sure if its fatigue, lack of exercise, something else or all of these.  I am going to talk to Dr Stephen about including a Neurologist in Rory’s care team.