Day 9:Breaking All the Rules (in a Very Good Way)

One thing Naomi's doctors have always said is that she is an unusual case and she always has to do things differently. When she is ill she never presents with typical symptoms, she has unusual and unpredictable reactions to general anesthesia and things that should propel her forward set her back and vice versa. Well today the feeding team met to discuss Naomi and decided to do something they have never done before.

Naomi is consistently getting it 1800 calories a day but she is falling significantly short of her fluid goals. So she is going to get water, which usually is a no-no here because calories are so necessary. She will get water at one snack and water after drinking 4 ounces of juice at the other snack. She is also going to be allowed water between meals and snacks just not within 30 minutes of one. We are also going to increase the overnight water via the g-tube to 12 ounces from the 8 she has gotten the last few nights. Being fully hydrated is very important as dehydration is just bad in general but it also kills appetite and makes one cranky and feel lousy in general. Hopefully the water will get her fluids up to where she needs and we can nix the g-tube water all together but I am so proud of the progress she has already made I will focus on that progress while working hard on the fluids. Just today we've already seen progress with the dehydration in that her urine is less concentrated.

Our checklist from dinner, showing her checked off boxes and the reward of
getting to play with the Barbie house in the play room.

The other big breakthrough today was the use of checklists. Naomi does a lot of stalling during meals, that is the big reason they are usually taking an hour. She will dawdle over every bite and then pocket the food in her mouth and take several minutes to chew and swallow it, she also likes to take microscopic bites and sips. With a checklist, we make a row of boxes and she must eat/drink something that I specify to check off each box. We don't set it all up at the beginning of the meal, just the number of boxes, but we develop it as we go, that way I can go back to a food or lower or raise my initial expectations based upon her progress. We also draw a picture of what she will get to do after the meal at the bottom of the chart and vary easy and challenging requests, I even let her decide for some of the boxes. The therapist who suggested this is brilliant. We used if for the first time today at afternoon snack. In the first half of the snack we ate one Oreo, a teaspoon of milk and a few sips of water, all of this took 20 minutes, after we instituted the check list she drank half an ounce of milk, 5 ounces of water, 2 more Oreos, 7 animal crackers and 2 teaspoons of sunflower seeds, in the same amount of time and therefore had 20 minutes left to play in the gym. We did it again at dinner and what usually took 50-60 minutes took 30. We also used the "bug in the ear" for therapy today. I was alone with Naomi while the therapist watched and I had an ear piece that they could speak to me through, it allowed for immediate feedback which was awesome but a little disconcerting and it is hard to hold two conversations at once and one you can't really acknowledge. I love being able to get the both positive and constructive feedback immediately.

Two other greats for today, last night Naomi fell asleep at 9:30, the earliest yet so hopefully tonight will improve too and Naomi got a half hour music therapy session. It was a great one on one time with the music therapist who played music and sang with Naomi and she absolutely loved it. Tomorrow her Child Life Specialist set up a scavenger hunt for her to do around the entire hospital, I think I might be more excited for that than her. Definitely looking forward to tomorrow