When you’re having a child, all you really care about is that he or she is healthy. Unfortunately, life doesn’t always work out that way. My husband and I discovered this the day our son, AJ, had a major seizure when he was 5 months old. Following that were diagnoses of cerebral palsy (CP), epilepsy and global developmental delays. Like many others with CP, AJ was put on a feeding tube. While necessary, I found the feeding tube was counterintuitive to my instinctive desire to nurse and nourish AJ. Not being able to do this for my son made me feel helpless.
However difficult the introduction of a feeding tube would be, we expected AJ’s troubles to slowly fade and to see more growth (in height and weight), better sleep, and most importantly, a happier little boy. Nothing could have been further from the truth.
AJ constantly struggled to digest the prescribed amounts of formula, and he would be sick multiple times a day. We tried eight different formulas, made changes to how and when we fed him, and did everything we could to keep him healthy – but nothing was working. The sicker he became, the more we thought there was something else the doctors needed to diagnose.
During this period, we began looking for answers online. I found a small community of amazing people on sites like Food for Tubies and the Adult G Tube Feeding Facebook group. Their inspiring stories helped me to see that the digestive problems were not due to some inherent physical problem with AJ, but instead they were a result of how his body reacted to the formula we were feeding him, which was typically at least 50 percent corn syrup. We realized that there might be a very simple answer in my own kitchen: real food. The people I met through these sites encouraged me to try blending meals for AJ’s feeding tube.
So we decided to take the plunge into a blenderized diet. We started off slow, giving AJ some baby food through his tube. We couldn’t believe how big of a difference it made! AJ responded to the new meals and his health and spirit improved rapidly. He began gaining weight, was more active, and most importantly was finally the happy little boy we hoped he would be.
Our story is that of many people. We were welcomed into a community that had been through what we’d been through, who generously shared their experiences to help AJ, as well as my husband and me. From this community we learned that we had alternatives to commercial formulas; options that were safe and proven to be effective.
The decision to look to real food meals was one of the heart, but moving forward with it was one of the head. I wish it didn’t take me as long as it did to realize this. I would recommend anyone with CP who is struggling on a formula to try a blenderized diet. My son’s transformation into the happy, healthy boy he is today feels nothing short of a miracle, and as a parent it feels great knowing I am producing the nourishment he needs.
Julie Bombacino is CEO of Real Food Blends, maker of all-natural blenderized meals for feeding tubes. She lives with her husband and two children in Chesterton, Indiana. For more information on blenderized diets visit http://realfoodblends.com/.
Photo credit: Stephen Serio