And now for a story I love to tell. Long about February of last year, my friend Daria and I met at a special needs moms' night out in Missoula. We were seated at opposite ends of a big, long table loaded with cocktails and Asian food and didn't get a chance to talk, but she emailed me later and introduced herself as mom to Gia, then 8 months old, who was on a feeding tube, as Heath was at the time. I had just gotten in touch with Markus Wilken, who would help Heath wean from his tube later that year. Daria followed Heath's progress, cheered him on, and began to cook up a plan to help Gia break free of her g-tube too.
Gia is a magical girl who is genetically unique - she was born with a duplication of the 9th chromosome (9q34 duplication). There are a couple of journal articles about similar but not identical chromosome anomalies to Gia's, so no one out there is just like her! Unlike Heath's diagnosis of CP, which is well understood and super common at 3.3 people per thousand, Gia's is one full of unknowns and mysteries. She has dainty hands and feet, a small rosebud mouth, deep dark eyes, and a smile that will melt your heart. She receives physical, occupational, and speech therapy and has some hearing loss, though how much is not clear. What her friends and family do know is that she is adorable, happy, curious, persistent, fun-loving, affectionate, loves to roughhouse with her big sister, and has almost always been interested in food. Despite the appetite-killing sensation of tube-feeding, this little Russian/Italian girl began to love spinach (!) and other purees long ago and I always saw her became animated when food was being served. Anyone could see there was an eager eater in there!
Tube weaning wasn't an easy road for Gia or her family. Because she was prone to ear infections and catching colds, two previous wean attempts had to be cut short. Finally, in late January, Daria and Gia traveled to Seattle Children's Hospital for a two-week outpatient wean with Karen Quinn Shea, a gifted and intuitive feeding specialist.
Gia weaned with flying colors! I was able to visit during a baby picnic early in the wean and Gia was so receptive to being around food! She happily crumbled a scone and put small pieces in her mouth. We could see it was coming! After all all the false starts and disappointed hopes of the past year, Gia's wean was perhaps the fastest and smoothest I've heard of. Once her tube calories were reduced, her evident joy at being able to truly desire, taste and be satisfied by food was glorious!
While traveling to Philadelphia last month, Gia ate so much she was able to drop supplementary night feedings. She demolished all kinds of food at gatherings with family and friends. As Daria wrote...
Monday she enjoyed the non-cheese parts of a Philly cheesesteak!
Tuesday evening she ate 3 meatballs, a handful of green peas followed by TWO large chocolate cupcakes with frosting and sprinkles!!!!! Each cupcake was 280 calories!!!!!
This was was what she ate yesterday. 1 4- inch pancake with butter and maple syrup, 3/4 of a hard boiled egg (she ate all the yolk, less of of the whites), 1/2 of a vanilla large cupcake with frosting, 1/2 of a chocolate cupcake with frosting, 1 graham cracker, 2 meatballs (sandwiched sized) with added olive oil, about 1/2 cup fried rice, 5 pan fried pot-stickers (!!!!), and topped it all off with 1/2 a purple marshmellow peep.
Needless to say, Gia gained weight and enjoyed herself thoroughly.
Yet, the drama is not entirely over. Some of Gia's medical team in Missoula remain concerned that after three months her weight has not returned to its pre-wean level. Hmm. It took many, many months for Heath to gain his weight back, and he never returned to the 50th percentile on the weight curve. Why? He never belonged there in the first place. In fact, I feel guilty that we stuffed him to such an unreasonable extent on the advice of well-meaning dieticians. No wonder he vomited daily, painfully, until the wean began....as Gia used to, and no longer does. (Since his wean, Heath has climbed steadily up the 5th percentile, which his pediatrician agrees is appropriate given his genetics and diagnosis. He grows, learns, develops, is happy, and eats with gusto until he's full. End of story.)
I admire Daria for working patiently and civilly to educate Gia's entire team regarding tube feeding best practices and the tyranny of weight charts which do not apply to our unique -- and thriving -- children. Since her wean, Gia has made phenomenal gains in motor development. She is more outgoing and confident. And most importantly, I see her beautiful smile more and more!
For more about Gia's amazing journey, read "An Unexpected Path," a beautiful series of posts by Daria at Mamalode (the local Missoula moms' magazine) about tube weaning and the path of "unexpected" parenting. Daria tells Gia's story much better than I can -- you can also find her blog here. I'm so moved by her unwavering advocacy for Gia, whose uniqueness cannot be plotted on any curve. It doesn't take a medical degree to see that this girl has her eyes on the prize.