Alfie and I have often half-joked that Francesca is our “little science experiment.” We measure out medications and probiotics, mix them with water, and essentially inject them into her system. We methodically calculate how many calories are necessary in order to increase our success for catch-up growth (110 calories per kg). We do math equations to determine the best combination of time, volume of calories, minimum vomiting, and maximum growth. We take her to the doctor for weekly or monthly weight checks, depending on how things are going. We record every ounce that goes in and every ounce that comes out. We have taken daily stool samples to her gastroenterologist to be tested for any sign of blood. She has been forced to drink radioactive material of some sort so the doctors could analyze her gastric emptying. She has been strapped down under a machine to look directly at her digestive system twice, once to make sure that the tube had not perforated her stomach and another time to locate a missing part of her feeding tube. She has been poked, prodded, examined, and analyzed by pediatricians, gastroenterologists, endocrinologists, geneticists, allergists, naturopaths, acupressurists, speech pathologists, feeding therapists, occupational therapists, and sensory specialists. Some of these scientific efforts have yielded answers and others have labeled Francesca a “medical mystery.”

The culmination of our dedicated so-called “science project” has been the incredible fact that Francesca is back on the growth chart at a weight typical of other children her age. This monumental success was our intermediate goal.

And now, we have moved on to the culinary “art project” and our ultimate goal of helping Francesca develop a positive relationship with food. We just completed day three of the tube weaning process, under the guidance of Marguerite Dunitz-Scheer of the University Children’s Hospital Graz in Austria. There have been aspects that have been more challenging than expected and aspects that have been less challenging. The basic premise of the program is to decrease the calories that Francesca receives through her tube and increase her exposure to food through play. For the past three days, she has received 25% fewer calories through her tube feeds. Francesca has been incredibly resilient to these changes, even though we know she can sense that her whole world is shifting. We are challenging her reality and asking her to do something extremely difficult. She has needed extra comfort and has spent an atypical amount of time in my arms and on my lap. On the second day, she did have a complete crying, screaming hungry tantrum during which she tried to retch and gag to make herself vomit (something that has become a control mechanism for her). But for the most part, all of our efforts have been aimed at creating fun experiential learning opportunities for Francesca to explore food. We have “play picnics” using tea sets at noon, play peek-a-boo with mini sandwiches, build gingerbread houses, cut out cookies, cook meals together, fill the house with aromatic baked goods, and create jewelry using dried fruit, marshmallows, yogurt covered pretzels, and cereal (and…we wash lots of dishes).

To be honest, this process is shifting all of our perspectives as we slowly move towards Francesca’s first bite. Tomorrow, we drop her tube fed calories to 50%, increase our faith and trust, and continue to facilitate Francesca’s experiential learning as she creates another day’s worth of artistic culinary masterpieces.