I thought I better come back and write where we are up to so the days don't just blur into many which they tend to do more and more lately. I am trying hard to keep a record of our journey so we can learn from it. It has been 26 days since we took Faith's NG tube out and I must admit I am discouraged and sadden at this point, why? Because the last few days she hasn't been eating very well again. Completely refusing food today not having much at all. We have changed cups, changed tastes and even tried offering her a bottle. I cradled my baby now a big girl in my arms and she refused the bottle but reached out and touched my face ever so gently.
My husband and I are struggling, we are trying so many different things to help her learn to eat but today isn't good. On the bright side she is talking more and is at times very happy, usually after a small amount of food and to the other extent where she is screaming and screaming. Hunger pains I would think. We are anxious about where we are at and how to help Faith further. We cannot fail her, we cannot send her back to a feeding tube and endless days of vomiting and lying on her back due to her vomiting more and more. Now she sits up nearly all the time and is becoming more grown up. We cannot fail!
As Christmas Day isn't far away in our part of the world I long to have Faith enjoying her surroundings more and understanding Christmas but it is all in time but be it ever so slow in our world. We took Faith to Carols by Candlelight last night and it was the first time we have been out amongst so many people in a very long time. Faith had a wonderful time watching all the other kids play and sing. She looked so alert and her blue eyes beaming intent on not missing anything. We caught up with friends chatted and laughed and enjoyed the coolness of the evening. I wonder what it is like to have my little girl play and dance in the moon light?