Monday, 16 September 2013


Our life with Jacob has somewhat shifted in the last month or so.  He requires constant supervision with me being at arm’s length, pretty much every minute of the day. His abnormalities increase, and so does his care (and right along with that our love increases by leaps and bounds too.)

After meeting with our paediatrician last week, he suspects the 'seizure like activity' we’ve been seeing are not seizures, but brain stem misfiring.  Neurology is getting involved again, so we'll see where that directs us.  Jacob may have to go for some testing.  I'm thankful that the educated guess the doctor has given is that Jacob's not having seizures, yet I'm concerned as his brain stem continues to show more signs of abnormalities.  The outlook is grim.

Yet, amidst all the doom and gloom, Jacob continues to surprise us.  Surprise us with a smile here and there and a rare giggle.  It's so uplifting.  We can go months with no response, so when we get them its heart warming.  Even last night he thought something was fun, so he giggled.  Just one super short one, but it still classifies as a giggle :)

Several weeks ago we had our Pastor and his wife visit.  What an evening of encouragement and direction!!  Weeks later we can still swim in the ocean of thankfulness!   He told us something which has made us view our situation through a different set of eyes.  He said people call Jacob handicapped (which we could all agree, he's handicapped), yet, your other children are far more handicapped than Jacob.   Jacob doesn't have the capabilities to develop a sinful thought or a sinful desire or to carry out a sinful act.  Your other children have many sinful thoughts, desires and sinful actions each and every day.  Jacob resembles God's image in an amazing way.  What a thought.  What an encouragement for our little Jacob!  Jacob was made in God's image!!  So precious.  What a pleading ground.
We've worked on transforming Jacob's room into a snoezelen room once again.   He loves the quiet, darkened room and soothing music, so it only seemed right to put it together again.  After talking with different therapists, we have a room where Jacob can relax his little body.

Enjoying his own ball pit.  An amazing fact about the ball pit is that he can sit supporting his head.  Usually his neck has little/no control, yet in the balls he keeps his head up for some time.

In the darkened room.  He seems to enjoy the lights and music together.
When the girls are home, Jacob can end up anywhere.  If he's fussy, they usually know what soothes him, so they lend a helping hand.  I sure miss that now that they are gone to school!!!
Another one of the girls ideas.  If one thing doesn't work, they go on to another.  It doesn't take long for our living room to look like a storm just ripped through :)

Jacob in his favorite chair!  He's also trying out his new feet splints for the first time.

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