Tuesday, January 6, 2015

The Next Step

I've been sitting on this post since October.  I write a little bit, then I save it.  Then I write a little more, then I erase everything.  I'm not completely sure what the mental block is about other than that my own feelings about all of this are so fluid, it's difficult to write about it succinctly (because I do succinct soooooo well under even the best of circumstances).

Ever since Secora was in the hospital back in May 2013, every bit of feeding progress has been an uphill battle.   Her preferred form of calories is pediasure.  Given the choice, she would subsist on nothing but chocolate pediasure.  This is actually a big improvement.  When she was younger, she didn't take pediasure and we had no "back-up" for oral intake.  In fact, for weeks after she was in the hospital, she would ask me to take her back and put the "needle" in her arm again so she didn't have to eat.  With weekly therapy, she did eventually get back to taking mostly solid foods.  Her typical diet consists of waffles or oatmeal for breakfast, chicken nuggets for lunch, a corn dog for dinner and dried mangos, vanilla yogurt or nilla wafers for snacks.  Every. Day.  There is slight variation from that, but it's very slight.  Tyson stopped manufacturing the chicken nuggets she eats for a little while and we were scrambling to find her something else with some protein in it and we had people searching for them in several different cities.  Some days she might eat pretty decent and take in a good number of calories with "real" food, but she has not gained weight without pediasure since she was in the hospital.  For a while now, feeding therapy has consisted of working for about 2 months to get her to the point of taking small bites of a food (actually eating 1-2tsp), then she stays there for a few weeks and then completely drops the food again.  She's dropped long term "safe" foods for baffling reasons---granola bars because she saw something she thought was a peanut in one (it wasn't, but she hasn't touched a granola bar since), strawberries for who knows why, even candy has been dropped lately.  Making food extra sweet was a way to entice her in the past, now she won't eat chocolate unless it's plain.

Eventually, her therapist said we really needed to consider taking her to a specialized feeding program for an evaluation.  Such a thing doesn't exist where we're at, we have to drive 3 hours to get there.  We got all of the paperwork put together from the therapist, the doctor and us and got her on the books for the evaluation.  She went just before Christmas.  This is a program that uses an integrated approach, each child sees an occupational therapist (OT--they work on sensory issues), a speech therapist (SLP--they work on oral motor and swallow coordination problems), a dietician, and psychologist (to look at the behavioral side).

As a mom who tends to fret about not doing enough, I was worried about how this appointment was going to go down.  A not small part of me was worried they were going to tell me I had royally screwed up and just not tried hard enough.  Instead, they told me we were trying too hard and need to push her less.  I knew she didn't have motor problems (which the SLP confirmed), but I thought the psych might say her problems were behavior based.  That she was a regular ol' picky eater that we let get way out of hand.  Instead, she told me there's not really much of a behavior component at all, that she's willing to work even when it's clearly really really hard and that she's easy to motivate.  I've always felt like the problems were largely sensory and that was confirmed with the OT's report that there are ALL sorts of sensory things going on and while our at-home sensory work has made the outward signs of that better, the part of it that directly relates to feeding isn't really being addressed adequately.  She sees an SLP at home, not an OT, so this fits.  We used to do OT, but we had a less than fabulous experience and chose to drop it years ago because it wasn't resulting in any improvements.  Secora adores our SLP and works well for her, so we've settled for the SLP doing a limited amount of sensory work with her (she has access to a full OT gym and supplies).

I and our therapist suspected the therapy recommendation was going to be a few days at the feeding program every few weeks, then implement techniques at home in between.  So I was a little shell shocked when they recommended day patient treatment.  That means all day, 4 days a week for 5 weeks in a row.  She will have two meals a day at therapy and LOTS of OT work in between.  Because it's so far from home, they give us a referral to the Ronald McDonald House while we're there.  We have friends and family that can help with the big girls, plus they CAN go with us (though it's obviously not ideal).   The logistics are a bit nightmarish, but don't bother me as much as the what ifs.  They think they can get her off pediasure in 5 weeks.  They think they can teach her and me enough that she won't need any formal feeding therapy after she's done.  This would be great.  Hopefully it happens.  Forgive me if I'm skeptical.  We don't have many options left though, we are kind of at the point of either sinking our eggs into this one basket, or just giving up, because we haven't made any real progress in a very long time and every illness sets us back for weeks.  Other things, like her tolerance of food smells she doesn't like (peanut butter is big....she HATES it, her sister LOVES it) has steadily worsened over time.  So we will do what we can to assure the big girls that they are loved and cared for and we aren't pushing them off to the side, while we interrupt our routine in a big way to support Secora in what will be a full-time job worth of therapy for over a month.  We will count our blessings that we aren't there for anything more serious and that even if it was all pediasure, at least she IS taking all her food orally.  We'll be glad this program even exists within driving distance and that there are lodging options to ease the financial cost.  And we'll hope that an integrated, intensive therapy program makes it easier for her to tolerate or even enjoy this most basic part of life.

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