Monday, March 17, 2008
"El niño debe saber que él es un milagro, eso puesto que no ha sido el principio del mundo allí, y hasta el extremo del mundo no habrá, otro niño como él." (see translation below)
Pablo Casals (Spanish Cellist and Conductor, known for his virtuosic technique, skilled interpretation and consummate musicianship. 1876-1973
I watched a miracle happen this weekend with Ashley – she ate several cheese quesadillas and 2 enchiladas. I know that doesn’t sound like much of a miracle, but believe me, it is.
When I first brought Ashley home, she was two years old but was the size of a 9 month old. The only nourishment that went into her body was milk from a baby bottle. It wasn’t long after that homecoming that she was scheduled for G-tube surgery. The G-tube, once I overcame my initial and overwhelming fear of it, has proved to be a lifesaver for Ashley. She finally started to gain weight and grow once I was able to feed her through the tube. But, my dream for her was that she would be able to eat by mouth one day, and so, right after the tube was surgically inserted, Ashley entered the feeding program at our local children’s hospital.
At this particular hospital, the feeding program involved me dropping Ashley off early in the morning on my way to work, and then she would spend the day with various therapists working on getting her to eat by mouth. At the end of my work day, I would pick her up from the hospital. For 5 days a week for 6 weeks, that was our routine. By the end of the six weeks, Ashley had stopped fighting the therapists and would sometimes agree to take a few bites of yogurt or pudding. We were still a long way from the dream of eating by mouth.
At the end of the 6 week program, Ashley then transitioned to outpatient feeding therapy at a hospital location a little closer to home. We would go three evenings a week for the therapist to work very hard at getting a bite of a nutrigrain bar into Ash’s stomach. I was starting to get very discouraged and resigned to the fact that the G-tube might be the best solution for Ashley. It was at just that low point that a new therapist starting working with Ashley, and things changed for the better.
The therapists at the hospital and for the first year at outpatient therapy used a behavioral approach to get children to eat. Ashley’s reluctance did not seem behavioral in nature. When the new therapist suggested that we use a sensory-based approach, I agreed, and from that point forward, Ashley has done very well.
Over the years, she’s made her way through soft foods like yogurt and potatoes, then onto blenderized food – things like beans and ham spread mixed together – and finally to food with some texture to it. She is now eating a variety of different foods including some meat. She could probably use a few more vegetables and fruit, but I keep reminding myself that she still is a kid first and foremost. So, when my oldest son suggested going to lunch yesterday at a Mexican restaurant and taking Ashley, I had my doubts.
I packed up her backpack with her favorite Campbell’s Soup At Hand, mac and cheese, and lots of crackers and cheese, convinced that eating Mexican food was not in Ashley’s plan for lunch. But much to my surprise, she not only ate it, she ate a lot of it – quesadillas, enchiladas, nacho chips, and very spicy cheese dip. We even had to ask the waiter for extra food because she was making her way through the initial order so quickly.
Do you see now why it is a miracle? This child of mine who didn’t eat anything for the first several years of her life – this child who has spent years of her life in feeding therapy – this child who is deafblind and hates new textures – willingly and with gusto enjoyed a cultural lunch yesterday!
My son was so excited that he even paid for everyone’s lunch!!
“The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him.”