Saturday, March 10, 2018

Kayson Strong as an Eagle Day 46

Tuesday 3-6-18
After the laundry fiasco, I still needed to get the laundry dry and it took till after midnight to get it dry.  There was another mom in there and we talked for two hours!  It was refreshing and she agreed I only had one load, lol.  Kayson is really starting to get homesick and the hospital staff is starting to notice.  Honestly, we are all homesick.  This is hard.  His Neuro Psychologist even let him call me to say hi bc I wasn't there yet bc I slept in.  Later after I got there, he was almost crying and wouldn't really talk to me so I asked him if he wanted to see pics of home.  We sat there and looked at pics of his siblings, extended family, the house, everything.  He was smiling soon.  Seriously though, I almost started crying too.  Glenn is anxious to leave.  Just feeling closed in.

tired of measuring his pee
tired of constantly being watched
tired of writing down all intake and worrying if its enough or the right stuff
tired of being separated (can I just sleep in the same building as my husband again?)
I want my things
my control
my people

Glenn's napping, I feel discouraged.
Kayson had an appt with the neurology clinic today.  It went well, the doc is very impressed with his progress.  Things still feel quite overwhelming, more appts coming and more tests.  Still uncertainty.  He is still in the at risk for recurrence time frame.  We have to get rid of our trampoline.  The doc did day that they have a scale to 10 for deficiencies and Kayson scored a two.  He said prestroke, he prob would've been a one bc of his possible (testing likely this summer) dyslexia, that I was already seeing and he was struggling in school before but now he is a a two.  This is good bc he's so close to prestroke already and his physical symptoms (weakness, shaking for fine motor activities) that is putting him up to a two.  Then we waited 2 hours for transport to come get us!!!!  OCH even had to call us to find out where we were and we were like we are still waiting and then they had to call Acadian multiple times and finally someone showed up!  Thankful for a vending machine to get snacks bc it was dinner time.  Thankful I remembered Kayson's iPad.  It was dark when they got there but we finally got picked up and back to OCH.  I had to heat Kayson's pizza back up for dinner.  It was crazy.  Life is an adventure.  I started imagining cherry trees to sleep in around the waiting room in case we were left overnight (I knew this would not be the case!) LOL  Yes this is an Anne of Green Gables reference!!!

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