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Just one of those CF things

August 1, 2017

I had a melt-down the other day.  Or Avie had a melt-down and I had a nuclear detonation.... Regardless, this happened at snack time.  

 

The dreaded snack time.  I don't know about other kiddos, but my child hates being pulled away from her toys or games to eat.  No matter what's on the menu.  Now, once I've wrangled her into the highchair, she usually acquiesces and chows down.  But- there's a catch (as always, with a toddler): if we've gone too far into the hunger zone, she turns into a hysterically mean food critic.  

 

Which was the case the other day.  I had pushed her to the morning snack limit, because I just HAD to get my errands accomplished.  When we finally got home, I set her up with what I thought was going to be an awesome snack: Ritz crackers stacked with tomato sauce, mozzarella cheese, roasted zucchini slices and turkey.  However, as soon as Avalyn saw the little tid-bits of deliciousness getting piled on to her precious "tatchoos" she lost. her. mind.

 

I assumed that I knew what the problem was, and I began to deconstruct the snack towers... but then she cried harder!  Eventually refusing to eat all together.  I still don't know what the ultimate issue was, but here's why I started to lose it: she had already swallowed her enzymes and she was refusing to eat.

 

Most CF kiddos have to take enzymes with every meal.  These replace the ones their bodies can't release.  There is a limit to the number of enzymes a person should take in a day.  This limit can be exceeded, if needed, but it's not recommended.  Sometimes- depending on weight, number of meals, etc- a person's "required" enzyme amount is under their daily "max".  This allows for an additional dose of enzymes if needed for an extra snack or meal.  

 

I enjoy when Avie's required number is below the max.  It currently, is not.  Which means that once those enzymes make it into her mouth- food needs to follow.*

 

(*Food should follow enzymes, anyway, because there is a chance of a tummy ache if no food is consumed.  BUT it's not necessarily the end of the world if this doesn't happen.)

 

Is everyone on track, here?  Because it's about to get more complicated.  Enzymes are only "active" for, say, 45 minutes.  However, the first 20 minutes after being ingested is the ideal time for food to be consumed.  So we, as parents, are urged to get our kids to eat their meal within 20 minutes of swallowing enzymes.  

 

Has anyone seen a toddler sit and eat quietly until their food is gone?   No. 

 

But, whatever, you do the best you can because that's all you can do.  And it's what you HAVE TO do.  Yet, here I was; constructing, deconstructing, consoling, cajoling and begging my toddler to just eat something for a good half hour!

 

When I realized how much time had elapsed, my brain took a swan-dive right into the CF Mommy thought pool of hell.  One of two things was going to happen:

 

1) Avie would continue to refuse to eat, eventually not getting a morning snack that day.  This would not be good because those are essential calories she would be missing out on.  

2) She would eventually calm down enough to eat something, but there was no way it would be consumed in the "prime time" for the enzymes, meaning that not all the nutrients and calories would be absorbed by her body.  Again, missing out on those essential numbers for the day.

 

Why was this such a big deal (aside from being major brain-damage on me)?  Oh- because she lost a half a pound in one week.  LOST a half a pound!  Toddlers don't usually loose weight.  CF toddlers AREN'T supposed to lose weight and I was just told the day before that she needed to gain that back and then some- in order to get back on track with her weight where they want it.  

 

Pressure: ON.

 

So rather than just shrugging and saying, "Okay, we will try again later," or, "Oh well, I guess you will wait until lunch time," like most Mom's can say.... I yelled.  I screamed, "EAT YOUR FOOD!" at my terrified, over-tired daughter (and did I mention she is sick, too?).
 

It was not my proudest moment.... and it didn't work anyway.  She eventually nibbled on a little snack-bar, but it wasn't worth it.

 

The whole debacle was something only another CF Mama can truly understand.  It's just one of those things that CF parents have to worry about.

 

 

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