Friday, 25 May 2012

Good News!

Wednesday Jacob had an appointment with the dietitian and the nurse practitioner for tube fed children at the hospital.  We've been in limbo for about 6 months regarding his feeding tube.  Do we keep going with his current g-tube or do we change to a different type of tube?  I wish this could be an easy decision, but every tube has its pros and cons.  So, a lot was depending on his weight gain/loss.   With much thankfulness I can say that Jacob has finally gained weight.  It was a small gain, but it was a gain:)  That is the first gain since the beginning of March (he's lost 2 pounds since then.) 

Also, very positive news came when they found out his head grew.  To be honest, with our other kids, I thought the whole head circumference thing was a big waste of time!  Well, head circumference is one of the key's in following Jacob's health.  He is still under the growth chart for his head size, but he is following the growth curve at a steady -10 percentile.  This means that his brain is growing!!!!!  That probably explains why we are getting a few responses now and then from our little man.

Jacob is involved with a play group at the CNIB (blind institute.)  This is proving to be very interesting.  They have set up about 12 different stations which the kids can explore, all relating to their sensory system.   He loves the 'little room' the best!   We're unsure why he likes it so much, but he responds very well with it.  The more he moves, the better it is for him, as his muscles and joints are very tight.  We are trying to encourage him to move, and this little room is perfect for that.

He also loved the big green chair (until he almost kicked himself out of it.)

We experimented with a light table, but were unable to figure out if he actually noticed it or not.  We know that his vision is impaired, so it's a matter of time to see what he sees if anything.  Everything physically is perfect with his eyes, it's just a matter of what his brain processes.

With Jacob, answers aren't easy or quick to find.  It all takes time and repetition.  Our vision specialist gave us a great example this week.  She said that as we develop, everything we learn all goes in 'books,' nicely categorised on a shelf., and before long, we have a bookshelves full.  With Jacob all those books are in a pile on the floor.  Every time he sees/hears/smells/feels something, his brain has to sort through the books until it finds where he has experienced that before.  Many times his brain turns the experience off before it actually finds it.  That's why repetition is key!!

Often I think of all the issues that Jacob deals with and it is overwhelming!  Even though he'll never reach the milestones of most children, I'm reminded continually that Jacob is 'fearfully and wonderfully made!' 

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