Wednesday, 20 March 2013


      Unsure.  That one words sums up my thoughts of late.  Unsure what the future holds.  Unsure what tomorrow holds.  Unsure what an hour holds. 

     Unsure what the new developments mean.  Or, could I say denying the reality of what the new developments mean?  I wish I knew. 

     It was so exciting when we could wean Jacob off the oxygen last weekend.  What an encouraging step! 

      The oxygen-free stage didn't last very long.  He's back on 02.  He had a period today of bizarre breathing.  Scary breathing.  Thankfully my mom was here.  I can always use her calmness.   Thankfully the nurse came in when he was still gasping irregularly for air.  We're guessing it's another one of these things that are being mis-fired from the brain, but hopefully will find out tomorrow for sure.  How long?  How long, Lord?  

     Yesterday the CNIB therapist came to work with Jacob's vision.  She was extremely happy with Jacob's response in his 'little room.'  This has been a constant positive for him.  He responds amazingly in there.  Today, we placed him in there, simply because he was Mr. Cranky Pants, and we didn't know what else to do with him.  After some play time, he settled and went off to sleep for several hours.  We just never know!   
Sleeping so peacefully in his little room!


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