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The Countdown Begins

Monday, June 6, 2011

We have been given our discharge date.  And our conversations with the staff here are more and more about how we can do this at home. 

Supplies that we have needed to make sure we have when we return home include a chair for Bennett (one that does allow him to wiggle out of and preferably keeps him sitting properly at a 90 degree angle), a blender (preferably something small like the "Magic Bullet") and a food measuring scale (that measures as small as 1 gram).  We also needs LOTS of toys.  We've been told garage sales and dollar stores are great places to buy toys and trinkets.  I'm spending alot of feeding times here trying to figure out which toys best motivate Bennett to eat.

We've been told our discharge date is June 14.  This is really great and completely on time.  We have met some sweet friends here who ended up getting sick, setting their discharge date back a few days. 

Bennett has continued to respond well to the program.  I got clarification today that Bennett should be eating 1300-1500 calories per day.  This is 20-50% more than what a child his age should be eating (which is actually 1000 calories per day).  So, it makes cutting down his tube quite remarkable considering he has to eat so much in a day to do so.  Today we were given the green light to cut out another feed today.  Bennett came in taking 6 6.5 bottles of formula through the course of the day - 3 during the day and 3 at night.  Yesterday, he was taking 3 6.5 bottles of formula throughout a 24 hour period - none during the day and 3 at night.  Tonight, Bennett is taking 2 6.5 bottles of formula throughout a 24 hour period - none during the day and only 2 at night!  I wanted to dance all day when I got word of this.

Bennett is also drinking alot more.  This is the key to his being able to wean more.  If we can get him to drink more of his calories, he will begin to thrive even more. 

My thoughts are turning homeward.  How will I do it all?  What do we need?  Is everybody gonna get into a good pattern?  If we add something to our schedule, what will we have to take out?  Is this feeding system feasible with church, family activities and/or date nights? 

Now that I've grieved, I'm started to find my resolve.  I am beginning to make lists, charts, plans.  I am preparing like a momma bird building her next, preparing in expectancy. 

One of the things that hit me yesterday was how much we have been through in less than two years.  So, one of the things that gives me peace going forward is knowing how difficult the last 20 months have been and having confidence that just as we have done many times before, we will not only survive but thrive.  We can do this.  I can do this. 

I have no idea how but we are ready to face the challenge of a rigorous feeding schedule to wean our baby off the tube completely.  It will be worth every second of it, I'm sure.  Bennett is worth it.

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