Actually it's from Ohio to Ukraine, back to Ohio, then to China

Sunday, May 29, 2011

the hard truth about our "non-eater"

I don't talk about this much, but Damon and I are really struggling with Wesley's eating (or lack thereof). I'm not sure how to explain the stress (serious understatement) we feel to someone to who hasn't experienced it with their own child. It's even hard for me to comprehend (and I live it every day) because I love eating and the whole experience of eating! It baffles me to try to imagine not enjoying food or the time spent eating with friends and family.

I find myself struggling to enjoy spending time with him due to the thought of a future battle to make him eat or the stress lingering from a past battle. It sounds crazy to type, but in all reality, his eating will often consume my thoughts. But at the same time, I'm numb to it. It doesn't phase me when Wesley makes the most horrible gagging sound at a restaurant, even if it's loud enough to hear three tables over (and yes, others look at you like you are a horrible parent for letting your child choke like that when you don't freak out).

If you do a google search on "a child who refuses to eat," here's the advice you get "wait until he gets hungry enough to eat. Children won't starve themselves." Um, yes they will. We aren't dealing with a picky child in terms of what foods he likes or doesn't like. In all honesty, there aren't many foods that Wes dislikes. I realize how strange that sounds because I'm talking about a child who doesn't eat. I'm not sure his dislike stems from the food so much, but more the act of eating the food. We have tried to make dinner time fun and enjoyable, but somehow it always comes down to us putting the food in his mouth or telling him he can't get up until his food is gone. No longer fun or enjoyable for any of us.

Damon and I have been talking, and we think he might need to go back to feeding therapy. I used to take him once a week, but it was horrible. He would show off and throw food and just misbehave in ANY way possible. I have to say, those were some of the longest hours of my life. I would have difficulty driving home because I was sobbing so hard.

At this point in our eating adventures, I am inclined to think that there must be something physically wrong with Wes that makes eating difficult. My guess is that it is something called dysphagia (because online reasearch has made me a doctor). The basic definition would be that he can't swallow effectively because he can't control the food with his mouth or tongue. It's also possible that his esophagus has narrowed in the area where his EA repair is. All past swallow studies haven't shown narrowing, but at the same time it hasn't been easy to get him to eat and sit still so the doctors could watch the barium go down his throat on an x-ray.

So the plan is to get an appointment with his surgeon as soon as possible and ask him to get us started on the process to taking care of these eating issues once and for all. We would really like to get this taken care of before we bring home his sister (which is taking longer than I had hoped, of course). Please pray for all of us during this time...and especially at dinner time.

Sorry this post is such a downer...I promise to write a happy one next time :)


Amy said...

My oldest has been home for almost TEN years, he is now 13. He has NEVER been a good eater - he does not have the same challenges that Wes does... but my son does have PICA (meaning he eats non-food items). He has also NEVER EVER liked meat - or any type of protein!
I have tried EVERYTHING to get this kid to eat - and it has been a huge pain in the butt for TEN years... sorry - that is a downer for ya! Don't listen to the idiots that tell you kids only eat when they are hungry! Our type of kids are different - there is usually a real reason why. My advice for you is to not feed him during family meal time - let him try to graze.... hand him a carrott here, a piece of cheese there, a mouth full of yogurt as he walks by. Stick with just finger foods. Plan an amount to dole out each day, and just hand it out whenever he is distracted with something else.
We have SO BEEN THERE with the dinners from Hell... they are awful, and no one wants to end their day that way! The easiest way to that the ERRRRRRRR out of dinner is to have him do something while you and the hubby eat. If he WANTS to sit with you while you eat, the rule is that he eats what you are serving... modify whatever it is that you are eating to his likes, and keep it simple if he decides to join you.
We did this for about a week with our son... he finally decided to join in because when everyone was done with dinner, we had dessert - if he was not sitting with us at dinner - no treat.
It is tough - and so many people just DON'T understand. It does take time and energy and patience, I know. I am a total food lover - I love love love to eat... and it still gets to me how a kid will not like pizza, or hamburgers or on some days melted cheese.... it's a battle and I feel for ya! Hang in there!

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