Thursday, 13 June 2013

Today's Meetings

Well, I'm going to start with an exciting story (at least for me it was!)  Today I went to pick up Jacob from the home, CPRI, in London.  He was super content in their snoezelen room when I arrived.  That is always a welcome treat to leave or pick him up when he's happy.  I walked into the room and said 'Hi Jacob.'  Instantly he pouted and did a whiny cry.  To most moms it's not the best welcome from a child, but for Jacob, I'll gladly take any deliberate response!!!! His cry was saying, 'Mommy, please pick me up!!'  I sure did.  He was soaking in the love.  What a beautiful moment.  As I was leaving, the child life worker was thrilled to see Jacob so alert and happy :) 

CPRI had arranged a meeting to get the team together and discuss the current status.   That meeting was scheduled for today, just before I would pick up Jacob.  The only thing I knew about the meeting was that once again I was going to be sitting around a large conference table with people with A LOT more knowledge and education than I have. 
Jacob's dedicated paediatrician was present, along with CPRI's paediatrician.  Lisa Pearlman, Nurse Practioner, was also giving her wise advice along the way!  Wow, I have high regards for that lady.   Many others were there (I believe 13 in total) all giving their input into where we are today with Jacob, and where we are heading.  Paul and I are called to make some heavy decisions in the near future about the amount of care he receives at the homes.  Thankfully a decision doesn't have to be made today!  I need some time for my brain to unwind.   Those meetings are crucial in Jacob's care, but can be overwhelming to say the least.

Three things stood out from today's meeting.
#1 - it was confirmed that Jacob's irritability is progressively getting worse. 
#2 - Jacob is one of the most irritable children that many on the team have followed.  They are also feeling like they are running out of options.  There's not a whole lot of avenues to explore.  Dr. Kerr and Lisa were going to talk with our Neurologist about some medication options.  I'll let them do the research :) and have them let me know what they have found out, and then Paul and I can take it from there.
#3 - we have a GREAT team walking this path beside us!!  Without each and every one playing their part, things would be much harder for us in the home!!   We have been blessed beyond what we can comprehend at this time.  God is faithful!!

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