Thursday, June 2, 2011

What What??

I know, two posts in two days - insanity!  But I just looked at Becca's clinical record on, and for the first time ever -- FIRST TIME EVER! -- EVER EVER!! -- she doesn't have a < symbol in front of her weight percentile.  She's actually, genuinely on the growth chart, right on the 3rd percentile line!  Woo-damn-hoo!  

And that is all.

Oh, okay, I'll go ahead and tell you what the GI doctor said this afternoon.  Most interestingly, when I told him that she qualified for the special ed program (more on that later), he laughed and said, "We'll see how long that lasts -- she's really smart!"  She had, after all, just showed him where her liver and esophagus are.  

But he also said that he wants a new, formal feeding evaluation and another scope to check out the inflammation in her esophagus.  It's been a year since we did either of these, and he just likes to repeat them every so often, which works for me.  The scope will involve withholding the second half of the nights' feeds, but he's going to make sure she's the first case in the morning so she (hopefully) won't revisit the hypoglycemic seizures we've seen in the past.   

And speaking of feeding and evaluations and therapy, we discussed weaning from the g-tube. Becca's current feeding therapist is all about it - she wants to change her continuous feeds to bolus feeds (a lot at once instead of a slow drip) so that Becca gets hungrier and is more likely to eat.  I'm very much opposed to this plan right now - we are simply too dependent on the tube for her basic nutrition still.  I mean, it's not like she's exactly caught up in her growth and weight or anything, and we're pushing as much milk down the tube as possible in order to gain every gram possible - and it's FINALLY working.  And she's ever solids better than ever.  (Though still nowhere near getting most of her calories from solids.)  I think this therapist doesn't fully appreciate how bad her feeding issues initially were and how far she has come in the past couple of months.  My biggest goal for feeding therapy right now is for them to work on desensitizing her gag reflex so that she throws up less and keeps more food down.  Seems like that would help her grow AND make eating more pleasant.  I mean, throwing up every day doesn't exactly make food appetizing.  I guess some parents want to start weaning as soon as the tube gets put in, but, really, I'm in no hurry to get off the tube.  We got the darn thing, surgery and all, to get food into - not to immediately start treating it like the enemy we have to root out.  For us, it needs to go side by side with learning to eat solids.  

And the doctor agrees.  He REALLY doesn't want us to work on weaning or even condensing or decreasing tube feeds AT ALL yet.  For heaven's sake, today is the first time she's legitimately ON the stupid growth chart!  Give the kid some time to chunk up before taking away her main source of nutrition.  If she can learn to like McDonald's hamburgers (yes, it's true - she'll eat an entire patty!) while still getting tube feeds, surely the g-tube isn't disrupting her hunger and feeding patterns too much.  What it is doing is giving her the nutrition she needs to grow and develop into the big, strong, SMART and FUNNY girl that she is becoming!  

So there.  No weaning pressure.  I feel validated.  We're still on the "get as many calories in her as we can" plan*.  That feels better.  Now eat up, little one.  I'll take you to "Old McDonald's" whenever you want.  

*  One caveat: we really used to feed her absolutely anything she would eat because we really needed every single last calorie that we could get in her.  I'm still VERY flexible with her menu, but we are being intentional about making sure that she's offered a balanced meal each time - at least one protein, fruit or veggie an starch.  I'm fine with that protein being ridiculously processed hot dogs, etc, but we are steering away from meals that consist solely of chocolate chips and M&M's, because that's what responsible parents do AND because, ironically, Becca is actually at a very high risk of developing diabetes and becoming obese in adolescence and adulthood, so the healthy patterns we are (slowly) working on instilling in her will be even more important than for her peers.  I'm even getting used to eating a few more real meals myself.  :)

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