I Had a Dream...

It has been quite an eventful few days.. Over the weekend, following a screaming fit when I tried to connect Landon to the feeding tube overnight, I made an executive decision to not give him feeds and to see if he would get hungry and actually eat. This wasn't a psychotic break for me, I promise! I have been concerned that Landon is losing his oral skills- ones that never really developed anyway because he never had good practice eating. There has been talk with the doctors of beginning to wean him, but we haven't gotten that far yet. Anyway, with his kidney doctor's blessing, I did not give him a feed all day Saturday, Sunday and Monday. I knew that he wasn't taking in enough calories to gain weight but I really wanted to get a good idea of what he would do if the feeding tube wasn't there. I'm happy to say that he did begin eating a little better! But again, certainly not enough to grow. I learned yesterday, that he actually lost 5oz in the past two weeks (probably just over the weekend). Boo for weight loss! So, in talking with his pediatrician, we discussed a plan that will eventually result in weaning him but will do it slowly. I told Jimmy, "my intention was not to get rid of the feeding tube." His response was, "yes it was." Okay, okay.. my husband knows that sometimes I am endlessly optimistic and hopeful. He also knows that I don't believe a thing that anyone says until I see it for myself. In my dream, Landon would have become hungry, tried some food and realized that this is a wonderful thing. So he would have started eating and all would have been right in our world. I know, I know... So, we are back on getting bolus feeds every 3 hours during the day and a continuous feed at night. But hopefully will make some changes in the next few weeks. But, we are going to be consistent in putting him in his high chair and giving him something small to eat before hooking up his feeding tube. We also are going to begin meeting with a feeding team again to work on skills that will help him to chew and swallow more efficiently. I was thrilled to make the two of us pancakes the other morning. I ate my pancakes and Landon made a funny face, gagged and spit them back out. Oh well, I guess I am the only one in the family who really likes pancakes!