When Jeremy and I explored the Hershey Feeding Program a few months ago, we had no idea how successful Leo would or wouldn't be. We knew there was not a money back guarantee, but we both felt we needed to give Leo this opportunity and try it. We didn't want to look back in five years and say what if. We have no regrets about the amount of time, energy, and resources we have put into Leo learning to eat the last 8 weeks. We learned so much from the therapists at Hershey and it really has catapulted Leo's eating full force ahead. We have invested too much in Leo learning to eat to go back now.
All that to say, after our appointment at CHOP with a specialist who we trust and respect and who "gets" Leo, we are needing to change our feeding path. We have tried the "Hershey" way for 8 weeks and although it has helped and worked for hundreds of kiddos, it is not working for Leo. There are some other physical issues like constipation and reflux which are being caused by the tiniest amounts of a certain formula that we have had to stop and get Leo back to where he physically was before he started eating by mouth.
The reality is that Leo is considered a medically fragile kiddo. He has had surgery that has altered his stomach, affecting the way he digests food. His little body, fights change and immediately goes into a defensive position when any change good or bad is introduced. Leo looks great and is doing so well in so many other areas it is easy to forget just how fragile he is especially when it comes to this thing called digesting food.
We are still doing 2-3 daily eating sessions with Leo. They look different then what we had been doing, but Leo is enjoying them more and is much more compliant. The downside is the intake volume is not there during these sessions, but we are trusting that given time and practice the volume will come
I will admit that I am actually somewhat relieved. Life feeding Leo was stressful and wasn't enjoyable for any of us, especially Leo. We are in the process of formulating new strategies to help Leo. This isn't the end of Leo's eating career. I still believe that is it possible for him to be g-tube free some day. As with any journey, you sometimes need to make a u-turn or take a detour, Leo's eating journey is no different. We covet your prayers as we continue on this journey. We are so thankful for all of you that pray daily for Leo and we ask that you continue to pray for Leo as he continues to learn to eat.