Monday, 23 June 2014

Random Thoughts

Last week we were interviewed by a member of our medical team for a project for her schooling.  She gave no heads up as to what she was going to be asking, so we anxiously awaited her arrival and questions.  The worst part about it was the fact that the 'interview' was recorded!!  One beautiful thing Paul and I gained insight from was from the question 'what have you learned from having Jacob in your life.'  We all took our turn.  Sheryl was last to answer, and I was the most amazed at her response!!  She replied 'I've really learned how caring people are!'  What a beautiful response.  She didn't reply that she now knows what an apnea spell is, what a pneumonia looks like in a little boy, how uncertain life could be or how hard it can be having so many people come into the house.  Instead she saw the beautiful way that people help out in various ways.  I was so thankful for her response.  Yes, she has pain many times, but at this point in the journey, she is able to dwell on a huge positive.  Thanks be to God for this breakthrough!!

Also, last week a meeting was held at CPRI (the one respite home) which included several staff from the home plus most of our community team.  They can be daunting meetings, but this one went fairly well.   It seems like we can't get off the train of Jacob's weight/feeding intolerance not being an issue.  It would be so nice to have a time that he handles his feeds well and gains weight.  When we push the calories he gains weight but doesn't feel good because of it.  On the other side, to see him grow in length, but not put on much weight is truly a burden!  We've revamped his feeding slightly, so we'll see what happens.  So far, the desired effect hasn't been reached :(

We received pictures from the fundraiser, for which we are thankful to have those moments captured for us!  We stand totally amazed at the generosity of so many people!!  Thank you from the bottom of our hearts!!
Serious conversing.

It's that smile on Becky (our case manager) that has got me through many hard times!!

For anyone who knows our medical team, this picture really sums up the situation - Michelle is not wanting to give up Jacob while Ashley says 'Times up, it's my turn!' Jacob was held the entire evening by his medical (past and present) team!  

Lisa all ready to talk :)  She's a gem!!

Simply socializing.
A small sampling of the delicious food!!
Spending some time with his cousin Luke :)
Content at the end of the evening, even after all the sensory input!!

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