Feeding/Motility Clinic Tomorrow

Tucker has his first appointment at the Motility and Feeding Clinic tomorrow in New Orleans. Motility is the movement of food from the mouth, on down to the colon and out. Tucker has dysmotility, meaning that his digestive tract doesn't move food the way that it should. We don't really know the extent of this or how it affects him, so we will see if the doctors order tests tomorrow. One big issue we think he may have is esophageal dysmotility, meaning that his esophagus doesn't really push the food down. His OT thinks his problems starts before that maybe, she even mentioned it being some type of nerve problem that affects his tongue and other oral muscles. For those who don't know our history, Tucker has been in lots of feeding therapy pretty much since birth. I think I fed him a total of 2 bottles in his life?? Not really sure of the number...one experience was very positive, during the time he got off the ventilator when he was about 2 months old. Preemies have big problems learning how to eat at first, but Tucker was an amazing eater for about a week. The nurses and therapists were so pleased with him, until about a week later when his little lungs couldn't breathe for him, and he was too tired to bottle feed (bottle feeding takes a lot of energy, and preemies have very little extra energy). He ended up back on the ventilator for years, and for about 5 months he was not allowed to eat orally due to fear of aspiration. So the second time that the doctors let Tucker try the bottle, it was pretty much a disaster. He had no interest in it, and no strength in his mouth or chin to drink. So that was a bust, but we have tried over and over through the years to feed him. We usually have a few weeks of success, only to be moved back by any health issue or due to behavior issues. We have tried starving him out (seriously), giving him appetite stimulant, numerous reinforcements, and the social interaction (i.e. "peer pressure"). Tucker has had amazing therapists working with him for years, and lately we are taking a break from feeding as we are at some type of physical roadblock. His therapists really believe that Tucker wants to eat, but that there are two problems: 1. he has had so much failure in the past that he has just given up. 2. Something is physically preventing him from swallowing his food. None of us like to be forced to do things we aren't good at....in Tucker's case, eating is not a positive experience. Tucker has a g-button, and he gets formula and blended food through this. He is 100% tube-fed. Medically speaking, having a g-button is not a big deal. There isn't an increased risk of infection; Tucker can take baths and swim, and if he pulls it out or it falls out, we can put a new one in very easily. Giving him the feedings is really a piece of cake! Many moms have pointed out to me how "easy" we have it, since we just pour his food and medicines right in, regardless of how they taste or whether or not Tucker is even awake. Socially, though, not eating is a HUGE deal! I never realized just how much of our lives revolve around food. Planning meals, grocery shopping, going out to lunch or dinner with friends or colleagues, birthday parties, weddings, holidays (especially Turkey Day coming up next week), we pretty much plan our lives around when and what we are going to eat next. Tucker could care less what his next meal is; he just knows that he has to sit still while he gets it. He is really hilarious, he even hooks the extenstion tubing up to his button and helps me put his meds in. When you ask him where his belly button is, he points to his g-button. We make jokes about Tucker's feeding issues. Chris says that food is Tucker's cryptonite. Everyone in our family knows when they open a bag of snacks for Tucker, they have to give him a napkin to discard the well-licked snacks....because they aren't going down his throat. They also know to check any opened food, because there is a chance that Tucker has licked food and put it back in! One of Tucker's favorite activities is to lick all of the flavor off of something, then force feed it to someone else. It's disgusting, but also really funny. Missy once joked that Tucker and Samuel would be able to drink their friends under the table by pouring the beer directly into their feeding tubes! :) We joke about everything, but at every meal (especially meals with other people) we realize what an odd situation we are in. Tucker usually doesn't sit down at mealtimes because he would much rather play or watch tv. He behaves well at restaurants and in the cafeteria at school, but it takes a lot of redirection and reminders. When our families get together (which is at least twice a week) we all take turns entertaining Tucker since he does not enjoy sitting with us. Our families (especially the Galatas side!) love to eat, and when we get together, about 80% of the time is spent at the table. Chris and I have talked about Tucker's feeding, and we have changed our goals in this area. We would like Tucker to sit with the family at mealtimes, sit with kids to eat cake and ice cream at birthday parties, and participate in food-centered activities even if he doesn't really eat the food. He doesn't need to actually eat anything, just want to be a part of the experience. We just don't see a point in Tucker's life when he wouldn't have his g-button. That is just not realistic. This is a definite change in our thinking; as recently as July of this year we were looking forward to the day when Tucker would just eat with his mouth. It's partly because it's a battle we are all tired of fighting. It also has a lot to do with Tucker's mito diagnosis. Mito kids need adequate nutrition to get to their cells, and the g-button is a great way to guarantee that Tucker gets an adequate amount and type of foods. Tucker also has to take a good bit of medicine and supplements, and it is just easier to put them in his button than to make any kid take all of that by mouth. We made the choice a few months ago to put Tucker's oral feedings to the back of the priority list. Tomorrow we move it right back up to top where it has been for year. Hopefully we will get some new information to help us form our new plan for Tucker.