Wednesday, August 13, 2014

She is Not a Picky Eater

A little over a year ago, Secora was hospitalized for a sore throat.  The sore throat was not the problem.  The problem was that because of the sore throat she wouldn't eat, drink or even swallow her own spit.  

In the 15 months since then, she has been doing feeding therapy along with her speech therapy.  She has made a lot of progress.  Unfortunately, in this scenario, progress often means she'll tolerate a food on her plate or maybe touch it, not that she'll actually ingest it.  The most useful progress is that she now drinks the full meal replacement pediasure.  She'd happily live on just that if we let her, which isn't so good, but at least we have an easily transportable "safe" food that supplies the minimum nutrients she needs.

So, I come across this blog post tonight about another child with these problems.   I tried to post it on facebook, but realized my heart was racing out of empathy for this mother and I had much too much to say about this to limit it to a sentence or two.

If you know us, or know someone like us, you need to read that post.  It describes Secora.  It describes why she's in feeding therapy.  This really exists and it is not solved by forcing foods or bribing with dessert or sending them to bed hungry.  These are not picky eaters. 

"But I know how it feels to have nothing he can eat...and to have his anxiety so high he is in tears and to have him telling me that he is hungry."
I know this feeling much, much, much too well.  My anxiety "breakdown" back in 2012 coincided with a time when my 16 month old would sit with me daily and sob, "" but gag on every single solid food I offered her.  I still nursed her all day and all night, but she wasn't growing.  We discovered Girl Scout Thin Mints were a "safe" food so the doctor and the OT said, "then feed her Thin Mints" and we bought cases of them (recently she has decided she won't touch GS cookies with a 10 foot pole...losing foods is one of the more frustrating attributes of this problem).  

When reading this post, I only saw 3 differences between this story and our story:
  1. Secora's problems started from the beginning, there was never a regression until the hospitalization.  In hindsight, I see it started with unusual nursing behavior from day 1 and she never started solid foods "normally".  She was in OT because of eating problems by the time she was 1.  
  2. The child in this post is 7.  Secora is nearly 4 and has been making some hopeful progress lately, so maybe it won't be so bad when she's 7?  We never know because feeding problems lead to food jags and food jags lead to "dropped foods" (things once eaten that she'll violently refuse for months).  
  3. Unlike the child here, she CAN handle different packaging and presentation of the exact same food item.  Took a year of feeding therapy to get there, but we can put juice in a different cup and it still gets ingested.  Yay.    
As this mom mentions, travel is stressful.  We love it enough to make it worth the work and we have eased back into it, but that's primarily been possible because she started drinking pediasure, which is easy to take along.  "What will she eat?" is still a major factor in planning any trip though.  One of the primary reasons she stayed home with dad instead of going on the Ozarks trip with the rest of us girls back in May was because we knew her food choices would be limited.  When we take trips, we pack all of her shelf stable safe foods like the blogger mentions, but the 3 biggest staples of her diet are frozen foods, which makes traveling with them troublesome, to say the least.  Stopping at a local restaurant in a new town is difficult because you don't even know if their version of a french fry is a type of french fry she'll eat.  Will a fruit cup contain mostly grapes and apples, which she'll eat, or melons, which she won't?  There are only two chain restaurants we can go to and know for sure she can eat a full meal--Chick-Fil-A and McDonald's.  Who wants to live on that for two weeks? And still, I'm grateful for this.  You can vilify crappy fast food all you want, but we worked HARD to get her to a point where she would eat a protein and a fruit and okay, maybe french fries and tater tots don't really count, but it's the only "vegetable" she's really eaten in her life and it helps keep weight on her (she has tasted cucumbers and very briefly ate sweet potato fries).

I'm also grateful to finally be at a point where she can sometimes tell us what is "wrong" with a food.  It is helping us figure out ways to make certain foods more palatable and find things that she can eat.  It makes me both proud and terribly sad to see her at therapy these days.  She tries so hard.  She willingly walks into that room every time and does what her therapist asks of her.  When she can't, she suggests an alternative on her own.  Sometimes she stops, takes a deep breath and then does the really hard thing she didn't think she could to.  Today it was licking a goldfish cracker.  Then she gagged and shuddered and heaved, took a drink, and kept working.  When she gets home, she's exhausted.  She typically lays on the floor or sits on my lap until nap time and then sleeps at least 3 hours.  Many days, I wish I could do the same.

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