I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, November 15, 2015

How to Get My Kid to Eat, AKA, When the Circus Comes to Town 5 Times A Day



Not having the desire to eat isn’t anything I have experienced (even when I have a cold and can't taste anything I keep eating just in case I may catch some flavor). I enjoy eating. I am blessed to have food to eat when I desire to eat it. Some people, many children, definitely one of mine, do not enjoy eating. It has become clear to me that my own kid's lack of desire to eat is a real challenge for him. It’s a struggle. Every pain associated with his stomach, even the pain of hunger, seems to turn him away even further from the mental desire matching up to the physical actions of chewing and swallowing anything.

Teaching my son Orson, who has a strong aversion to eating, to enjoy food and the time spent eating has been an interesting experience. Every day is different in what helps him to have eating success so we have tried a lot of silly things to get him to eat (you know things like take this bite like a doggy). Here are some things that work for us, maybe some of them will help another family.

·         We learned with our first kid from a genius nutritionist we work with at our CF clinic that we should never say “eat this food for Mama (or Dad, etc)” But instead we should focus on showing our kids that the food they eat is a choice of taking care of their body. When they are successful in eating, even a few bites, we encourage them by saying something like “Whoa buddy I bet you feel great after eating that cheese stick and taking care of your body.” “You are going to have lots of good energy now from that banana that you ate, way to take care of your body!” Of course this idea of focusing on kids making good choices for themselves and not for others even their parents is a good general life guideline, not just with eating.

·         Many days options of foods, for example when I list what I have that he could choose from and the list is longer than 3 things, he is overwhelmed and pushed father from the end goal of eating. So I stick to one or two things that he has enjoyed in the past then cheerfully convince him of how swell it sounds to eat that thing again.

·         The amount of food placed before my son can also overwhelm him. So I cut or arrange his food into a certain amount of bites and then we count down each one until they are gone. I sometimes, so he can see his progress, get a notecard and write out the numbers one through fourteen. After each bite I let him circle or cross out the number so we are breaking up the bites with an action.

·         We read a storybook while we eat. For every page, he eats one bite. This helps him have time to chew and swallow and helps me not to go crazy while I am sitting there waiting for him to do so. The goal being by the end of the book he is done eating.

·         Since he seems to be constantly wanting to walk around instead of eat we make action rewards for each bite. For example, he takes a bite and then gets up and does 5 jumping jacks, or he takes a bite and then does a crabwalk to the bookshelf across the room. This gives him the chance to wiggle, and break up the bites.

·         A new favorite of his is doing puzzles while he eats. He puts a piece in place and then eats a bite. There is an amazing puzzle app called “Jigty” that I like. This works well for him because he loves puzzles. Another child may get to paint one nail with nail polish for every bite they took, or race one car across the table for each bite they took – whatever interests the kid and is appealing enough to eat for.

I am sure that some would say what I am doing is unhealthy and I am creating an eating monster or that I should just let the kid eat and learn for himself. However, the good news for me in regards to these people is, its my kid so any mistakes I make with him are square on my shoulders. If I had a kid who wanted to eat and would actually do it when food was placed before him I wouldn’t be writing this post. Hopefully these ideas work for another family and they can come to see more days of willingness to eat and that magic connection of mental desire and physical action to chew and swallow.   

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