Thursday, February 10, 2011
A Lot to Swallow
Maggie has had her feeding tube since the day she was born and with the exception of a trial period of about 1 month, has always received 100% of her nutrition through that tube. That doesn't mean we didn't try to get her to eat by mouth. We tried and tried and tried, but it was not to be. Swallowing is a very complex motor function,. We all do it automatically, but with Maggie there are no automatic motor movements. Everything is deliberate and comes with great concentration on her part. If you try to concentrate on your swallowing, you won't be able to do it.
Test that. Try to swallow five times in a row right now.
Many kids with Cerebral Palsy figure it out, some don't and need feeding tubes. People without cerebral palsy need feeding tubes for other reasons. In Maggies' case there was far more than her motor function to deal with. She was born with her esophagus in two pieces. That had to be surgically created and, while the surgery was amazing, the surgeon can never do as good a job as nature when it comes to function. When this problem was added to her multiple other gastrointestinal problems it just wasn't going to work. Maggie's body needs a TON of calories to function. She could never eat enough calories to sustain her needs.
But we did try. She could never do liquids, but she was able to eat pureed baby food. Applesauce and plums was her favorite. The first time I got her to eat I thought we were on our way. But she would get sick and forget that skill and we would start over. Eventually we gave up any effort at nutrition by mouth and went only for tastes. As her respiratory issues got worse, we stopped that too because she seemed to get overwhelmed by the saliva that food created. Besides, she was allergic to so much stuff, it was hard to find something interesting to try that was soft enough but didn't have dairy, eggs, peanuts etc. We always give her licks of candy canes, which she absolutely loved,
Now she is bigger and stronger and more body aware and I am delighted she has this opportunity to try new things, especially with all of her friends. Her nurse is with her and if she gets overwhelmed, Nurse Janice will stop it. But that doesn't happen because everyone is careful and aware of her allergies.
Also to clarify - Maggie does not miss eating. It is not cruel to have her in cooking classes when she cannot eat. She loves it. Remember, she does not have the pleasurable connotation with food that most people have. She experiences hunger and requests food. In fact she "eats" every two hours. She is satisfied after a feeding, but for her there is no connection to the oral act of eating. She cracks up when she sees the tube and the can of "medical food" because that is what satiates her.
It is difficult to remember, sometimes, that everything about Maggie's life is different. It's difficult not to overlay our own values and concerns to her situation. But it doesn't work like that. Maggie is not only marching to her own drummer, most of us cannot even hear the music.
For those seeing it for the first time. the picture above is her Chef Halloween costume from a couple of years ago. Steve made the stove to fit over her wheelchair.