Big Day

Wow!! Its hard to believe that tomorrow is already here. We are going to stop CJ's tube feedings to see what happens. We had an appointment last Monday with OT and they suggested only stopping one tube feeding at a time. This I think was a good idea but only in some ways. Yes he would probably only be hungry a little and would not be short that many calories but, the problem I see with that idea is that he is still getting tube feedings so therefore I think if he feels hungry he will just wait for the tube feeding instead of eating real food. So just to humor them we did try that last week by stopping his 6pm feeding so that he would eat dinner. Although he did eat a little more he got bored and wanted to still be hooked up after just as we thought. So now we are going to test our theory and stop the pump altogether. We are going to bolus feed him in the morning and at bed time but we will not use the pump at all. I talked with CJ about this a little but I don't think he understands what I am trying to say because he's just worried about having to take out the button and whether or not it will hurt when it does come out. I tried to explain to him that we were not taking the button out, that we are just not going to hook him up to his pump but I'm not sure he was getting it. He did say OK that he would eat real food though so I am praying really hard that God gives him the strength he needs to get through this hurdle in his life. I am going to try to keep my blog as my daily journal also of his progress. I am really excited and also very nervous at the same time, please pray that all goes well for CJ.