Day 7: The Details

Today is a slow day.  One of the therapists came by for breakfast and then we're on our own for the rest of the day.  Naomi's been a bit resistant this morning but hasn't hit the floor yet.  The therapist said it will likely get worse this week.  I can't say I'm looking forward to that, I don't know how much table flipping I can handle,  but she said that usually the behaviors are extinguished by Friday, I am very much so looking forward to that.  And at least she's flipping tables where someone else does the mopping. I need to make a very nice card for the housekeepers before we leave here.  Last night Naomi had her last tube feeding with formula!  From now on no calories will go through her tube, only water and one medication.

A silly picture to most, but at 12:30 a.m. the pump alarmed and Naomi's last feeding with nutrition was complete.

I thought I'd go into some of the details of what we're doing here.  Every morning Naomi gets up at 7:30, we get weighed and then get dressed and a quick set of vital signs.  Then we head downstairs to the therapy gym for breakfast with one of the therapists.  We have an hour session, if the meal is completed in enough time Naomi gets rewarded with playing in the gym, her favorites are the various swings, the mini zip line, ball pit and rock wall.  We also give reinforcements at the table when needed.  Usually at the table we use a turn taking game so she gets turns for taking a certain number of bites or trying a new food or with really offensive foods just smelling or licking them.  The idea is to reduce the outside reinforcements and change them to verbal ones and eventually not need reinforcements.  Negative behavior is for the most part ignored, that is honestly the hardest part.  At the end of each session the therapists talk with me while Naomi plays, either telling me why they did what they did or giving me feedback on what I did, what I did right and what I need to change.  After our breakfast session, we have some free time.  We usually use it to do some of her school work.  At 10 a.m. we have a morning snack in our room, then get to head to the playroom until noon.  At noon we go back downstairs for our lunch time therapy.  Then back up for some more free time and back to the playroom at 2 p.m.  Back down to the gym for Afternoon snack at 3:15 p.m. and then some more free time in the evening.  We have been trying to go outside in the afternoon.  Then we have dinner in our room at 5:30 and back to the playroom at 6:15 for an hour of play before getting ready for bed.  It is a lot of mealtime but it's what it takes to get all the food in.

Some of the tools we use during therapy and other meals are small amounts on her plate and smaller plates and bowls, to make the food seem less overwhelming.  We've been having drinks in a little medicine cup which is small but also has lots of markings so we can show very simple clear expectations.  We have a child size table in our room and different style chairs to offer the support, freedom, restraint and height that Naomi needs.  We have a sign for our door when we are eating in the room so no one will come in and interrupt us.  They cater the tools to each child and for Naomi one of her biggest challenges is inconsistency with willingness to eat food.  She will eat a reasonable volume of something one day and then declare she has never liked it the next.  To help with that we've created a picture journal for Naomi where we draw the foods and she gets to rate them.  We tried numbers first but she didn't quite get the rating scale so we used the smiley face pain scale which made more sense to her.  Now she rates the foods and if she later declares she doesn't like them we show her what she thought before.  Also we talk about how sometimes when we first try a food we don't like it at all, but then the next time it's not too bad and then maybe we feel like its okay and eventually it may even become a preferred food.

Medicine cup with lots of markings to show progress while drinking.

Our table and chairs to eat at.

Naomi's schedule on the wall so she knows what happens next.

Her food journal

She really gets into coloring the ones she doesn't care for black.

Our sign to make sure meals are uninterrupted.

In between all that I meet with the dietary tech to pick foods for the next day and Naomi and I both meet with the psychologist at least three times a week. We check in with the others on the team once our twice a week outside of our team meetings every Friday.

Our team consists of five therapists (some OT, some ST), a dietitian, a gastroenterologist, a GI nurse practitioner, a social worker (and her intern), a child life specialist, a dietary tech, psychologist and the office manager for the feeding program.  It is great to have so many people working with us as they really care about every aspect of Naomi's day and having complete success.  They've helped with making sure she gets enough activity, she gets her school work done, she is happy and she is comfortable and sleeping as well as possible.

Day 7 17.1kg and 240ml of water through the tube!

Naomi's loving her personal Wii.  It's a good thing she won't be driving soon
 as the only things she didn't drive on was the road.

Naomi's self portrait.