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Running Out of Ideas -- Originally Published January 7, 2008

Sunday, July 25, 2010

Nothing new to report. We thought we had a bit of a breakthrough, but we let our hearts rule our heads, and things are now worse then they were before. But, in response to the many questions we have received in the past week, we thought you might appreciate a bit more information on Michael's feeding problems. We do like hearing suggestions from everyone, so we've also discussed some of the more common suggestions below and how they have worked for us. That way we can all be on the same page with our creativity.

1. Michael has almost no sense of smell, which dramatically affects his ability to taste. While it might seem as if we just gave Michael something "good to taste" he would be motivated. But, try this for one meal: eat the entire meal while breathing through your mouth. Even better, have someone prepare food without telling you what it is, then eat the first few bites with your eyes closed. Hard to tell what you are eating, isn't it? We had a minor breakthrough with Michael by switching bottles, to the point where we could struggle to get Michael through 1/2 an ounce over 1/2 an hour without spitting it out. Then we broke down and tried juice in case we were wrong about Michael's tasting ability. The juice was an unmitigated disaster -- it terrified him because it was so thin and hard to control. Taste was a non-issue. And now, consequently, we are not even sure if Michael will continue to allow that successful bottle in his mouth anymore.

2. Hunger is an obstacle, not a motivator. As hard as it is to believe, kids with physiological feeding issues (such as swallowing problems or an inability to coordinate "suck, swallow, breathe) are capable of starving themselves to death. Tube fed babies also have issues because the connection between swallowing and a full belly is broken, and instinct no longer functions properly.

3. Yes, we have forced him. We aren't proud of this, and we have been advised against doing it, but we have done it anyway. We have cradled him in our arms, immobilized his head, arms, and legs, and forced the bottle into his mouth. Simply forcing him to swallow once or twice has not improved the situation one iota.

4. Yes, we know about the cheek stroke and neck stroke. No help.

5. Michael will eat green beans and sweet peas now, and he is getting better at it every day, and we are very, very pleased with this. At least we know that Michael will not have the tube for the rest of his life. Once he is old enough to get all his nutrition from solid foods, we should be able to get rid of the tube.

6. As shocking as it is to learn, some babies never gain the ability to drink from a bottle. If Michael had had more success before surgery, we might have more certainty that he will be able to drink a bottle at some time. However, we do need to accept that there is a possibility he will be one of the babies that never takes a bottle.

7. Our current instructions from the doctor are that Michael will have his feeding tube for a minimum of 6 months. Our current worst-case scenario is that Michael will have his feeding tube until 6 months after his trach tube is removed. And, no, we have no idea when that will be either.

Well, gotta run. Until next time.

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