One Year

Tomorrow will be one year since X first received his feeding tube. Actually it will be a year since I first put the ng tube down his nose and into his stomach. That is something I will never do again.

This was supposed to be a three month deal.

I'm not sure how I feel about all of it. I am thrilled to see how well X is doing. He can take walks with us without having to be carried all the way. He doesn't need to be carried up the stairs anymore. He is wearing 4T shorts. 4T! Last year he was wearing 18 month shorts and 2T shirts. He is growing into his personality and has energy to spare. All of this is amazing and wonderful.

I am also not thrilled that he still has the feeding tube. We have had to accept this feeding tube is a part of our lives and we have had to work around it. We still don't know why X doesn't eat like he should. We don't know why he gets so sick when he catches any little bug. We don't have any answers really about anything. Which makes me fear that he may need the feeding tube for a very long time.

This summer I purposely took a break from tests for X and took a break from researching stuff. I wanted this summer to be filled with sun and fun, and that it has been. As summer comes to end, I know we need to start looking into things again, and that makes me fearful. I am of two things. One, that we will never figure out what is going on and that X will need the feeding tube for the rest of his life. Two, that he has some degenerative disease that they haven't figured out yet. Crazy, I know, but the unknown is one of my biggest fears.

I wanted to write so much more, but I'm having a hard time getting my thoughts together. I've had a lot of mixed emotions with the year anniversary coming up. I truly believed that he would not have the feeding tube at this point. I've also had a couple nightmares about the ng tube. I hope to never have them again.

So, it will be a year tomorrow and we are going to enjoy the glorious weather we have been blessed with.

- Posted using BlogPress from my iPad