This is the story of my daughter, Lucia, age 3 1/2, and how she is learning to eat. She likes to mix water and chocolate, soak raspberries in gatorade, and decorate her pants with pink icing. She polishes our dining room table with chocolate pudding (it leaves a nice glossy sheen!), and then licks her fingers. It's surprising (to me anyway) that "play picnic" is such an effective therapy. But more on that later...It's been an interesting journey so far. Lucia has Cystic Fibrosis, GERD (controlled with medication), and a Mic-key button.
At 5 months of age, she weighed in the 50th percentile. Then her calorie needs increased because of her CF, and she wouldn't eat or take a bottle because of the horrible pain associated with acid reflux. The trauma of so much pain left her orally averse. So at 9 months of age, she failed to thrive and her lung became infected. We hospitalized her and (gratefully!) placed a Mic-key button. The button saved her life. She passed a swallow study. Compounded omeprazole was prescribed for her acid reflux, and for the first time in her life she stopped throwing up.
As the calories cascaded directly into her belly, she began to rapidly catch up in her development. Over time, we figured out (with the help of an occupational therapist) that she had Sensory Processing Disorder. She was averse to certain textures and dispraxic in her oral motor function. She received occupational and speech therapy with much success. When she was hungry she ate (her intake by mouth was around 35% daily). But in the spring of 2010 she became iron deficient. The doctor put her on an iron supplement which upset her tummy and a new "complete nutritional formula." The nutritionist also increased her calories. Needless to say, Lucia was not hungry. She was receiving 1800 calories daily via g-tube. At this point, she was only eating between 5% to 10% orally.
She was also throwing up, grunting, burping, hiccuping, and experiencing digestive discomfort from the formula. I found the Blenderized-Diet Yahoo! group and began blending real food for her tube feeds. An amazing transformation occurred. No more throwing up. No more discomfort. Her energy level increased. She got that sparkle back in her eyes. We are now on our sixth week of the blended diet, and we are noticing other subtle changes; she says that food tastes good. She enjoys food. In fact, she makes delightful slurping and smacking and moaning noises as she eats -- kinda that famous scene in "Like Water For Chocolate." Makes me want to see that movie again. And eat some chocolate. Mmmm....
Through the Blenderized Diet group, I connected with a lovely lady named Olga who shared some studies from the Pediatric Hospital in Graz, Austria about tube feeding in children and tube dependency. What a relief! These doctors understand how futile it is to try to get my child to eat when she is not hungry.
Flash forward to today. I carpooled with our daughter's speech therapist to the Ambulatory Clinic at Lucille Packard Children's Hospital in order to present a protocol for safely reducing my daughter's calories over a 3-week period to induce hunger and (hopefully!) get her to eat more.
The meeting with the doctor, nutritionist, and OT went really well. Basically, they said "you did your homework. Go for it! And if this works, we'd like to use it as a model for other CF patients with tubes." Wow!
So here we are, sports fans! I'm excited, nervous, and hopeful. Lucia still eats a little bit by mouth, so we have that advantage. Every day as we practice the Graz "play picnic protocol" I see her try new foods. Tonight she tasted hollandaise for the first time! As soon as my son goes back to school, we'll begin the 3-week reduction. Stay tuned!
