Tuesday, March 24, 2015

Feeding School Days

Tomato Soup Fish!
We're starting week 4 of "feeding school" now.  It's been an adventure, that's for sure.  There have been some ups and some downs.

Because Secora was sick and had stopped eating again shortly before she came here, we were basically starting at square one when we arrived.  The first two weeks were just getting her back up to the calorie and fluid intake levels she needed.  She's hydrated now and meeting her weight gain goals.  The third week was focused on getting her to eat foods she used to eat regularly but had dropped since the last hospitalization.  Week 4 is starting out the same, but we should be trying new foods soon.  This is also the week I start feeding her during clinic meal times with the psychologist looking on to make sure I'm implementing the program the right way.  That's gone fine so far and I don't anticipate problems there.  A lot of the kids here do worse with their parents because they've learned certain behaviors to push buttons, but I don't think that's what she's doing or is going to try to do.  Of course, time will tell, I probably just jinxed myself.

A big frustration has been simply dealing with her anxiety over everything.  We had a lot of trouble at first just getting her to go into the therapy sessions and trusting that the rules are the rules, we aren't going to be changing everything up on her.  OT sessions got hard as she was asked to smell and touch foods she didn't want to deal with and for a while she was really worried she was going to be forced to touch or smell a food.  Because that would be completely detrimental to the process, forcing the issue is not how it works.  There is only positive reinforcement and any negative behaviors on her part are completely ignored.  She always has the choice of sitting in the chair and doing absolutely nothing for an hour, and she has chosen to take that route a few times, but it took her a while to trust us not to change that on her.

Our big successes have been eating corn dogs, eggo waffles and vanilla yogurt (in sessions at the clinic, still not in a different setting), which were all staples before she got sick, and finger painting with yogurt and tomato soup.  I don't think it can be discounted that she's also finally made a few friends at the Ronald McDonald House.  It took her a long time, but there is one adult and one teenager in particular that she actually seeks out and wants to talk to now.  There are a couple of kids her age that she will tolerate playing alongside and sometimes she warms up enough to engage in cooperative play with them.   This is pretty big for her and I think contributes to her quality of life here.  She's used to playing with her sisters and the neighbor kids at home and I think she was getting pretty bored just being with me.

I've also learned some new things.  The OT has told me that she's a supertaster, which I didn't even know existed before.  I immediately set out to google and found this short NOVA video that explains the basics.  The Wikipedia article was interesting mainly for the list of foods sometimes avoided by supertasters.  In particular, cheddar cheese is on the list and I spent a lot of time trying to get her to eat cheese and could never get it to "stick".  I'm also learning that her anxiety over food and sensory input in general is more of an issue than I thought.  This can possibly be used in our favor as we get her "stuck" on a new eating routine that includes trying new things and has very clear expectations for every meal.  Always knowing what is coming is going to be better for her than throwing new foods at her randomly.

Day to day life can be really fun and also kind of a drag, just like day to day life at home!  The Ronald McDonald House is such a blessing to have available.  Having a "home" to go back to that is always consistent is good for Secora.  The playrooms and playground are wonderful too.  Being around all the kids, some of whom have very serious medical issues, is good for keeping things in perspective.  Meal time can be challenging.  We have access to fridge and freezer and a personal pantry space, so I'm able to make her food for her easily.  I get three meals a day, which is a huge financial help.  Most of the meals are good, there's been a good balance between home cooked and quick food.  Just when I find myself groaning about yet another group making some sort of casserole and green beans, someone sends pizza or sets up a sandwich bar, so it all balances out.  We stand out as longer term residents now and have made friends with the other families that are there for more than a week or two.  The biggest frustration is that each meal is provided by a different volunteer group, so I find myself facing the comments about her eating at nearly every meal.  There's always someone in the group who is convinced they can talk her into eating something she doesn't want, or is flabbergasted or seemingly offended that she doesn't want their spaghetti.  I get to deal with the "but she looks fine" and "if she can eat chicken nuggets, why can't she eat pasta?" and "but WHY is she on pediasure, what's wrong with her?" comments on a very regular basis.  The staff makes up for it though.  They know her now and they go out of their way to make the food situation as easy as it can be.

For now, we just keep on keepin' on.  I've been a little disappointed with the speed of progress at times, but the therapists still think we are well poised to get her eating new foods soon.  Hopefully that continues and we can go home with a plan to keep her moving forward.

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