We did it! Francesca had her weight check yesterday and not only did her weight stabilize, but she actually gained. She went from 9.31 kg (20.48 pounds) to 9.47 kg (20.83 pounds), which is approximately a four ounce increase (25% of a pound) in seven days. We are in a state of elation, disbelief, relief, amazement, exhaustion, and wonder. Francesca is becoming a normal child who does normal activities, like eating. Our lives have truly been heroically transformed in a single month. We have endless gratitude for Marguerite Dunitz-Scheer at the University Hospital for Children in Graz, Austria. She has a miraculous understanding of the family psychology existing within pediatric feeding disorders. Her knowledge, research, faith, and unwavering belief that tube fed children can eat has truly given us the most phenomenal gift. A woman we have not even had the pleasure of meeting has given us our lives back.
Daily life is beginning to normalize for the first time since Francesca was a newborn. We will not go in for a weight check next week, but rather will give Francesca two weeks before quantifying her success. The expectation is that Francesca will continue to have good days and bad days, but that over time, she will gradually regain the weight she lost through tube-weaning and will eventually surpass her highest weight on record…perhaps without us even noticing. Francesca is still partial to certain foods. Her diet is limited and not the typical foods a health-conscious parent would choose for their toddler. But, we have learned that the most important element right now is for Francesca to be autonomous with eating. Once the behavior of eating becomes more ingrained, in two to three months, we will tackle table manners, etiquette, and balanced nutrition. For now, we are delighted as Francesca continues to vacillate between throwing food, chewing it, spitting it out, and finally swallowing enough to grow. Frankly, Frankie has discovered the joy of eating.