I hate the thought of so many of our children having feeding issues, but yet it comforts me to know that we are not alone.

Alyssa is 9 years old and still has her g-tube. It's been a long, frustrating road. Alyssa too, wouldn't eat anything. She was hypersensitive to anything even near her face. We brought her home after 64 days in the NICU on a continuous drip NG feeding tube. I found out a couple years ago that they don't send kiddos home any longer on continuous drips because it causes long term feeding issues. NO KIDDING!!! I wish I knew back then what I know now and if that were the case, Alyssa probably still wouldn't have her g-tube.

Alyssa did 2 different Intensive Feeding Therapies. She was on the bottle for 2 weeks and the Developmental Pediatrician decided that the g-tube was the next course of action because Alyssa wasn't gaining weight. Once again I wish I would have known. She was drinking from a bottle for 2 weeks. We needed more time. But I didn't have anyone to tell me otherwise. I feel like I've failed as her advocate. She got her g-tube and Nissen at 7 months old. From there we went to night feeds, but she still wasn't hungry during the day.

In 2008 Alyssa did another Intensive Feeding Therapy. They discharged her at 6 weeks telling us that there was nothing they could do for her. The program was only 8 weeks long. That was very disheartening to hear Medical Professionals tell you that there was nothing they could do to help especially what seemed something as simple as eating. I regret letting her participate in this program due to the fact after those 6 weeks, Alyssa regressed. She refused to put anything in her mouth and she went in fully potty trained and 6 weeks later she was having frequent accidents.

We noticed a slight change in her feelings towards eating when she started school. I think the "peer pressure" helped. She saw everyone else eating and in order to "fit in" she would eat too. She ate very little but she ate none the less. That led us to bolus feeds to supplement throughout the day. She was doing this up until last year when she was in 3rd grade and because of the supplemental feedings, she didn't get to go out to recess with her friends because the doctors were so worried about calorie intake but I refused to put her on the pump over night. We've gone through 3 different GI doctors. All who have suggested that she wasn't getting enough calories. We had tried everything and I felt like our trial and error period had been exhausted.

As we did more and more research on our own, we've come to realize and believe that Alyssa's body for some reason isn't absorbing all the calories like it should be. The problem is, is that we can't seem to get anyone to hear us. They always come back to "needs more calories." They don't seem to take into account either that Alyssa's Dad is tall and lengthy and she's built just like him. We can't seem to get anyone to want to take a look at Alyssa from a cellular level.

We have a friend whose son was born perfectly healthy and is the same age and only about 5 lbs. heavier than Alyssa and no one has batted an eye at him.

With that said now that we've moved to Indians we see a new GI tomorrow.