13 August 2011


If ever there was a mantra for parents coping with a sick child, actually for nearly anyone coping with anything, it's this: You are not alone.

I snagged a free reflux wedge for Lula that a fellow Fort Greene mom listed online.  It's essentially a triangular piece of foam with fabric and velcro wraps to suspend her at a 45 degree angle.  The idea is that it will help with her dysmotility and reflux because she can sleep but keep gravity on the right side of her food. It's sort of like a not-fun version of those velcro walls that were such a fad (which, btw, I'm totally getting for one of the kids birthday parties)


The woman, it turns out, lives in the building directly behind my house. We stood over her sons crib and talked nonstop for an hour. Her son has multiple gastric issues that she has been struggling with for the past eight months. She described so many similar worries, anxieties, and frustrations that we've had with regard to feeding. Mid-conversation she said, "God, I wish I had met you before.  I've felt so alone dealing with this." She could have leapt out of her living room window into the kiddie pool in my back yard - that is how close we live to one another - but without knowing it we were each coping with the same things in seeming isolation. 

Feeding has been the most stressful and nebulous of all of Lula's therapies.  She is actually eating the least by mouth now than she ever has.  At her swallow study a couple of week ago it was found that she is aspirating thin liquids and at risk for aspirating solids.  They recommended that she get nothing by mouth except in therapeutic sessions.  This is so hard to accept because she used to be able to drink entire bottles of milk and now we can't even feed her more than a few spoonfuls of puree.  She can "taste" whatever she wants, so I have been stocking up on organic lollipops, dried mango, and wrapping banana in cheese cloth so she can chew on it without getting too much to swallow.

Feeding is such a nebulous challenge to tackle. Lula's therapist Lisa put it this way; it's so hard to artificially replicate a natural act, and because eating is the most natural act in the world when it's not working it's extremely difficult to take apart the process in order to fix it.  It's like trying to teach someone to breathe.  From the first lactation consultant in the hospital to the entire swallow study team at NYU everyone has an opinion about how to get kids to eat.  However, none of them actually goes home with you and shows you how it's done. When you sit at home with the sage voices of experts chirping in your head as you fail to achieve any measure of progress, defeated by mushed pear, their theories and ideas can make you feel even more lost. 

This is where other parents are absolute godsends.  There is an amazing resource called Feeding Tube Awareness, as well as countless yahoo groups and facebook groups.  They are a wealth of resources, tips, tricks, and techniques.  They bemoan, kvetch, rejoice, and commiserate.  Everyone is incredibly generous with their experiences, the good and the bad.   They are on the same rollercoaster as you, holding on for dear life. 

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