Good Times

Things have been good. Very good. For an extended amount of time. This is the best X has been feeling, growing, gaining weight and eating since he received the feeding tube Aug 29, 2011. I feel like we are seeing the true X, the boy he is meant to be. He has been extremely irritable and explosive most of his 4 years of life because he was so behind on calories, or feeling miserable, or throwing up, or stressed from testing and hospitalizations. But not the past two weeks. He is peaceful (still a fireball, but a peaceful fireball), joyful, fun, smiling, and able to tolerate frustrations without a 1-2 or more hour meltdown. Our house is a different house. I am a different mom. And I am grateful. So grateful to see him shine. And he is shining.
I am also fighting feelings of terror and anxiety. I find myself thinking "When will this end?"' "Is this the calm before the storm?", "When is the rug going to be pulled out from under us?", "Don't get too comfortable, because this isn't going to last", "This is just a reprieve because something worse is coming down the road", etc.... It is a battle in my mind most days to not go there. I was thinking about this the other day when I realized, I am letting the fear of tomorrow rob me of the joy of today. I am still learning to live in the moment, to realize, whatever is going to happen tomorrow will happen; whether I worry about it or not, and to enjoy the moments of joy and peace as they come.
X has eaten 300-400 calories a day for the last 3 days. That's a jump from 50-100 calories a day. This is on top of the calories he receives with his feeding tube. He weighed 40 pounds on our scale today. When we started down this road with the feeding tube, he weighed 27 pounds. He has gained about 50% of his body weight in a little over a year. He is still the same strong willed spitfire, but it's different. I don't remember the last meltdown he had in public. I'm not saying that X wasn't fun, or happy. He was those things and he has always put a smile on our faces, but there was always a low level of frustration and he was tired, so tired. Now, he can go on walks with us and not need to be carried.
We still don't know why X will not eat enough or how long he will need the feeding tube. The only diagnosis he has is Failure to Thrive. We will start looking into more testing and will begin more research sometime this fall/ winter. However, for now, I will learn to enjoy the good times we are currently being blessed with.
- Posted using BlogPress from my iPad