Feeding Therapy Update

We had a follow up feeding therapy appointment at CHOP PA, and it turns out Tommy is still not able to gain significant weight. This is troublesome because the feeding technique were working on is a bit wasteful, allowing food to drip down his chin and face to encourage using his mouth and lips more fully.

Due to this, we have decided to move forward with an NG feeding tube, which runs through his nostril into his belly. This allows us to directly feed him using the tube while still working on the new feeding technique. While it's a big change and not the most comfortable, he is getting used to the tube already, and we've noticed a big difference in how easy it is to ensure he's getting his required nutrients through food and liquid.

We're still at CHOP to walk through the tube and processes for a few days. This will help our team dial in a good feeding schedule with the tube. Tommy will have this tube in place for a few months, but we're still excited at the possibilities and feel much more at ease regarding his nutrition. We will keep everyone updated on his progress with this feeding tube, including any complications or benefits from the tube on his upcoming DMI intensive.