It is the beginning of February. This time last year was the worst. Owen had many hospitalizations in dec of 2011, two hospitalizations in January of 2012, and a horribly scary hospitalization in the beginning of February 2012. Here we are now, February of 2013, and we are blest. Owen has not been hospitalized since September 2012 . . . that is 5 months of hospital-free living. We don't really know what to do with ourselves.
Owen seems to be turning a corner. He is fighting off sickness without needed to be hospitalized, handling his feeding rates like never before, and living as normal a life he can while living on continuous feeds and nightly TPN. It seems unreal to me. We are here. We are where we have longed to be since he first came home from the hospital in April 2010.
Our kids are growing and living a somewhat normal life at home and we are so thrilled! Currently Owen is on neocate jr formula at 30cals/oz at 77mls an hour. That is the highest feeding rate he has ever tollerated and he is doing it all while being potty trained :) We are continuing to increase it by 1ml every 4-5 days. He is at 6 days/wk of TPN for 8hrs and 5 days/wk of Lipids for 8hrs. We are hopeful we will be weaning that even more but because he was sick last month and lost a little weight we are waiting until our next appointment.
This week is feeding tube awareness week. Owen is surviving only because of a feeding tube. Without a feeding tube, Owen would not be alive today. He lives a pretty normal life right now and is not slowed down because he has a feeding tube. We will forever share his story of hope and life.
Each day feeding tube awareness will have a new topic to discuss. Today is our story. Why does Owen have a feeding tube. I wrote on this last year here so I won't go into why again. Please take a look if you don't already know and spread awareness of the many conditions that require a feeding tubes.