Knox, who lives with his parents in the USA, suffered from laryngomalacia and severe GERD during his first months of life. Along with a milk protein allergy, these conditions led to the insertion of a G-tube through which Knox has been fed ever since, causing him to completely stop oral eating. In June of 2016, his family travelled all the way to Austria to participate in one of our Eating Schools. Not only did Knox learn to eat, he loved it! In fact, he ate so well that his tube feedings ended during the course of the Eating School. Since then, Knox has been enjoying his new life!
From the parents
What was your life like before you decided to sign-up for one of NoTube’s programs?
Before we arrived at NoTube, we were exhausted. We were constantly calculating feedings, watching to make sure our infant didn’t choke himself on his tubes overnight, and we were stressed all the time. We saw our baby go from eating a little bit, to 0% oral while on his g-tube, and we were desperate to see him eat or drink something. We were told it could be years before he would start eating again. We didn’t have a lot of hope that things would get better if we continued on the plan of care we were on.
What were some of your most memorable experiences during the program?
There was food available all the time, the atmosphere and culture of eating provided a safe environment for him to take food whenever HE felt led. It was safe place for our son to experience food in a positive way.
We’ll never forget when one of the other children came and gave Knox a sausage stick to eat. It was so neat to see the kids supporting each other and growing together in their new skills.
Another memorable experience was being able to socialize and go out with the other parents, it was so helpful to go through this with other people who knew exactly what you were going through.
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
We felt like that staff were family by the end. The community environment, and continual eating together and doing day to day life together for two weeks straight was just the support that we needed. The doctors ate meals with us and observed our child, gave us helpful tips, and the other staff were always available to express concerns, process, and provide care for our son. We loved that they were experts in this field and had seen every possible scenario so they were truly equipped to answer all of our questions with care. The staff approached everything with our son in just a calm and confident manner, it really helped us to relax when we felt so nervous and unsure.
How has your life changed since you participated in the program?
Our son is now a healthy two year old child, with only a tiny scar from where his g-tube used to be. Tube feedings are completely behind us, and in the past, and looking at him now you would never know what he went through in his first year of his life. Knox eats and drinks just about anything, though he has good days and bad days we know that is normal toddler behavior.
What’s the most awesome thing that has happened with your little one since completing the program?
Watching Knox enjoy food is so beautiful for us to watch. It was our prayer that he would eat cake at his first birthday party, and we were able to see that happen! Every time he asks for more food or gets excited about food we are still in awe at how far he has come. We are so grateful for the support and expertise of NoTube. It completely changed our child’s future.