High time for an update!

So, it has been over a year since I posted last. We have been through a ton, and learned a lot as we have gone. It has been a year of huge ups and downs.

Ben continues to eat purees, although he has mastered those by now. His diet is very healthy, except for all of the oil and fat we add to his meals to help him get the calories he needs. I puree everything for him. He will eat cookies and crackers in very small amounts, and on occasion, he will eat a cheese cube or grape. He is lacking in self-feeding skills, since he does not see the need to eat, so we still feed him most of the time. We are slowly working on that one. I am looking for the thing that will take him to the next level, which would be food with a texture of some kind, but I am not finding it.

As far as feeding therapies go, he had not had therapy since graduating from the program he was in in Dec. 2006. Now, he is going to our local children's hospital for their so-called "intensive feeding program," but it is more of a frustration for me. I see him running the session with the therapist, instead of her being in charge. She will ask him if he wants to do something, and of course, somewhere between being a cranky 3 year old, and not wanting to eat, he sees the option to refuse and takes it every time. At the feeding program we went to in 2006, they taught us to maintain control, without making Ben feel like we were dominating. We were taught never to ask him if he wanted to eat something, because of course, he doesn't, and then what do you do when you give him the option, and he says no? When I go to the local hospital, they play games with the food, and dance around the real problem. It is a monumental waste of time, but I don't know where else to go for help. The specialists for a problem like Ben's are few and far between. What I really want, is to go back to the children's hospital we went to in 2006 for a one month touch up.

As far as ups and downs, there have definately been a few. Ben's grandma passed away last year after a fight with breast cancer. That was a difficult time for us. We got home from the program, and watched her go downhill. At the time of her death, Ben was going through a rough spot, and was vomitting frequently with meals. We did not know the cause of it at the time, and figured Ben was not tolerating eating well. We did some tube feeds to get him through that, which was disappointing to have to do, but we had no other choice. As the months passed, he continued to vomit with meals, and finally, the vomitting began to get out of control. We would feed him, and then make him sit perfectly still, or he would throw up. Then, he would have to sit for hours after a meal, or he would throw up. Finally, in the end of September, he vomitted non-stop, and ended up in the hospital for 9 days, and had an endless number of tests run. He got poked and prodded from every direction, but each test returned fairly normal. It wasn't until we got home from the hospital, and tube weaned again (he was not vomitting anymore) that we realized that the one different factor for Ben was that we were not giving him his oral formula. Come to find out, that formula, and especially that flavor, can cause issues like that in people. I found that info out from a friend whose daughter has EE, and not from Ben's doc, who I had been working with extensively in regards to the vomitting. His doc was completely surprised that Eo-28 orange-pineapple flavor could do that. Why is it always the moms who know details like that? So, as one can see, it was an interesting year.

In all of that, some good did come. We realized that reflux and EE did not cause this problem in Ben. The conclusion that we have come to is that the part of Ben's brain that tells him that he is hungry, and that he should eat, is either damaged severely, or is absent. His neurologist said that other patients of his who were like Ben often began to develop hunger, and eating skills around the ages of 6-9 years. I remain ever hopeful that Ben will someday eat like a normal person. I don't think he will ever love food the way most people do, but I think he will learn to do what needs to be done to get by. I can't wait for that day. It is a long way off though.

The exciting news for Ben is that we are going to have his feeding tube removed. His appointment is tomorrow. The tube is too big for him, and sticks way out. It was supposed to be "low profile," but it sticks too far out. His surgeon thought he would fatten up more, and planned for way more growth than what actually occured. It will be wonderful when he does not have that thing hanging out of his belly anymore. I still worry that he will need it at some point, but I have to believe in Ben, and that he will eat. We have not used it since the end of October, so it is time to get it out. HOORAY! We are graduating!

Ben is 3 1/2 years old now. He goes to preschool, rides the bus there, and loves it all. His favorite things are Star Wars, throwing balls, and riding his trike. He is still bubbly and energetic, and has an infectious grin and giggle.