Author: madvocator

Charisse Montgomery is the author of the Super Safe Kids series of books and safety tools. These tools engage children, parents, and their families in improving safety and advocacy in the hospital, the community and the home. A former educator, Charisse Montgomery has earned bachelor's and master's degrees in English, along with a master's degree in Educational Psychology, with research focused on informing and empowering parents of medically fragile children. She completed a graduate certificate in Patient Advocacy and serves on the Board at Rainbow Babies & Children's Hospital.

Don’t Look Away

When Richie was a baby, linked to a ventilator and a feeding pump, I would get pitying looks and stares as I took him from place to place. “Poor thing,” people would say, as if his entire existence was about those machines. I brushed it off and realized that people don’t mean any harm; they … Continue reading Don’t Look Away

Thoughts on Home Nursing

Having in-home nursing requires mutual respect: you respect the expertise of the nurses, and they respect the way you want things done for your child in your home. Your child’s nurses come to you with knowledge and experience, and you can learn a lot from them. They have often provided care for children with complex … Continue reading Thoughts on Home Nursing

Oral Feeding for a Tubie

When Richie was a newborn, we tried bottle-feeding him with an adjustable flow nipple. He was never really able to take more than an ounce at a time, and that decreased to zero when he had a tracheostomy at two months old. He was tube fed exclusively until he was about a year old. Then we began trying to give him baby food by mouth in small amounts. By then, he had a noticeable oral aversion, and he was resistant to trying food orally, but he would occasionally taste whipped cream or jelly if we put it on his hands. He kept doing poorly on swallow studies, which showed that he was silently aspirating his foods, so we stopped oral feeding for a while.

Food as Medicine: A holistic approach to blenderized tube feeding

In a medicalized existence like our son’s, there are lots of chemical exposures that we cannot control: the heated plastics in his ventilator circuits, the plastic in the trach and g-tube, the toxins in the various medications that help to keep him healthy. However, his diet is one place where we can limit these exposures and try to eliminate the harmful effects of pesticides and free radicals. By shopping sales and referencing the “dirty dozen” list of the most highly pesticide laden foods, we can select organic and non-GMO ingredients as often as possible.