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At NoTube, we’ve had an eventful year in 2016. Most significantly, we now feel even closer to our little patients than ever before. This is due to our new therapy center that enables us to welcome families from all over the world in Graz. This is the story of how this therapy center came to be and what we have learnt from operating it for the past year.
As 2015 drew to a close, we had this vague idea that we wanted to transition from traveling all over Europe to help children with feeding disorders (as we had done the 2 previous years) into welcoming them in Graz. As of September 2015, we had no legal clearance, no financial framework and most importantly, no location. But boy, did we have a team. Within 4 months (!!), our team worked out the necessary details and found an ideal location. It so happened to be right next to the University Hospital of Graz that we collaborate closely with. So in March 2016, only 7 months after we had gotten started, we opened our therapy center for the first ever Eating School in Graz!
Guest –> Host: Introducing learning cycles
While we had been guests of other institutions in previous years where we often couldn’t change environmental factors, our first eating schools in our own center enabled us to go much deeper in solving for our families. We bought furniture where it didn’t matter if you spilled yoghurt on it, selected the food based on its olfactory properties and adjusted the schedule according to the wake/sleep patterns of the little ones. In so doing, we recognized a pattern. Every eating school provided us participating team members with new insights. As a team, we didn’t want these insights to be lost and we knew that they were not all solvable on an individual level. Our solution was a recurring learning cycle as recommended by our friend Tom Chi. After every eating school, everyone involved in the eating school would sit together, discuss the things they learnt during this cycle and what they would like to see improved. Often, it became apparent that several team members had noticed the same issue. Many times, we found an instant solution by buying an item that had been missing or adjusting our processes. Sometimes it took us two eating schools or more to recognize a pattern. Most importantly, we kept improving every time. This seems almost trivial, but is so crucial for us as we head into the second year.
Let me highlight a few areas in which the most significant learnings took place:
If you look at the therapy center from an architectural point of view, you realize it’s almost the same as a kindergarten. And as every parent knows, kindergartens are a great place to have your kid come home with lice or catch the latest influenza. The cozy environment, the toys and simply the interaction with other kids lead to these unfortunate side effects. Given the often medically fragile children that we serve, we knew we needed to be better than a “normal” kindergarten but stay clear of the clinical atmosphere of a hospital. Our patients don’t want yet another hospital where their child might not get sick, but won’t learn to eat either. So in furnishing our “kindergarten” we used an iterative approach. We initially bought few things and as we noticed more distinct needs, acquired more items. We also noticed that some items such as our plush toys we had initially bought for decoration were now used by the kids with a heightened risk of saliva transmission, so we removed them again. In every eating school, another potential bacteria herd was removed. We bought new antibacterial toilet seats and door knobs, increased our cleaning schedule and asked parents to stay home if their child appeared sick. I can’t say were done with this topic or will ever be done, but I can say that our “kindergarten” is probably the only equipped and run according to the recommendations published by the Center for Disease Control (CDC) of the United States government (global gold standard for such regulations). For the next year, we specifically scheduled our eating schools around times that are low in virus outbreaks to reduce the risk of illness even further.
One of the most crucial aspects of our concept is the early and immersive exposure of our little patients to food. To this regard, with every eating school we tried out new elements to find out how we could best stimulate their interest in food. In our first eating schools, we learnt that not only taste but also smell matters a lot (obvious in hindsight of course). If food was simply delivered and served, the atmosphere was different than if something was cooked with flavors, which enriched the centers’ air. So we switched things around and started preparing egg dishes for breakfast in addition to the smell of fresh coffee and tea. For lunch we hired a cook who cooks the main meal. Every week, we have a barbecue on our balcony. We launched workshops to have kids involved in food preparation and produce “art” from food. From fruit salad to painting with chocolate and other sauces all the way to baking, the creativity of our little ones is amazing!
Since kids can only successfully transition from the tube to oral eating if their parents enjoy our therapies, we created workshops that help them understand how their kids would like to be treated. Having parents feed each other while not being hungry (similar to a child that is 100% tube-fed) and refusing to eat turned out to be a great way to increase awareness amongst parents. Including them in most of the activities alongside the kids interacting with each other helped parents understanding the specific challenges their child faces even more.
From a therapeutic standpoint, we quickly learnt that parents perceive individual sessions and rigid schedules as important cornerstones of any successful weaning attempt. They come from the world of appointments and one-on-one sessions and believe that more of this will lead to better results. Many of them have experienced several unsuccessful weaning attempts in other institutions. So it took us several learning cycles to find the right balance between the parents’ need for structure and individual attention and our child-led approach where the kid may explore and get time for serendipity. Tube-fed children don’t start eating when you tell them and they don’t need appointments. They need a safe, medically-supervised environment in which they learn, explore and discover new ways of interacting with eating, drinking and playing. In accordance with our general principle of a child-led approach we now tailor the therapy schedule to each child if necessary.
Going forward: We’re excited for 2017
With 9 eating schools planned for the upcoming year, we’re incredibly excited to keep learning and sharing our new knowledge with families from all over the globe!
We’ve just brought out an updated guide of how our eating schools work that I’ve attached to this article. Feedback is always welcome and very much appreciated. Comment below or send me a message and I’ll be happy to get back to you.