Monday, 13 August 2012


     On Saturday August 4th we were privileged to celebrate my parents 40th anniversary. It truly is a great blessing - 40 healthy years together. It was nice to be able to celebrate the occasion with family. 

     We were a little concerned for Jacob's sake, because the dinner was to be outdoors and it was extremely warm and humid - not a good combo for one who suffers from lung issues.  It went better than we expected.  Jacob was very content the whole afternoon and evening.  He even fell asleep for quite a while - something unusual for him at that time of day.  The best part was when he woke up, he was full of smiles and coos:)  That brought a smile on everyones face!  We almost wondered if he was aware of all the attention.  Whatever it was, those are moments we cherish!!!    

Breanne spending quality time her little brother.
Jacob full of smiles after a long nap.

My dear Dad and Mom with Jacob

     We were able to enjoy some time away with Paul's family last week. We dropped Jacob off at Pratton on Sunday. That enabled us to go up to God's house as a family in the afternoon and enjoy a quiet Sunday evening. 

    Bright and early Monday we left for Rice Lake.  This came with such mixed emotions.  Leaving behind Jacob, being 3 1/2 hours away (with clear traffic through Toronto.)  We left knowing that God has all things in His control.   The children were reminded very often that they were not to get their hopes up, because if Jacob ends up sick, we won't be going (which is exactly what happened last year!)  It was hard for them not to get excited about holidays, but yet, we wanted them to keep it in the back of their minds.  When we woke them up at 5:00 Monday morning, they were thrilled, and ready to go in minutes (if only school had the same effect.)
     We had a great week with the family.   It was neat to sit back and watch all the kids playing and interacting with each other.  Cousins are great!!

      Jacob did quite well for a few days, and average the other days.  There were no major concerns, so we could truly enjoy our week.   We were glad to be back, and it was wonderful to see our little man again!  They found out one thing at Pratton...that he loves the swing.   I might just have to keep my eyes open for one.

     Today it was high time to get in touch with the palliative care nurse and the enteral feeding nurse.  They share an office (at the London Hospital), and they were both at their desks.  It's rare for one to be at their desk, let alone both.  We had a conference call which usually is quite helpful - more heads together, the better.  We are grasping at straws.  Jacob continues to bring up lots of mucous and bile, which is a concern.  They have no clue why he is doing this.  He is maintaining his weight, but not gaining.  His brain must be sending out incorrect signals:(  Jacob has already had tests to figure if his digestion into and out of his stomach is functioning, and it works as to be expected.  So why we are having all these side effects, is quite a mystery.  We have a paediatrician appointment on Thursday, so we'll see what his thoughts are.  In the meantime, we have a boy who brings up phlegm and bile MANY times every day- that would have to hurt!!  Poor boy! 

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