We had a wonderful feeding therapist who worked with Leo weekly, but due to all the trauma of the surgery Leo was an extremely resistant participant in this feeding process. When you don't eat, you lose the ability to know how to do it. Eventually we made the decision to have a g-tube placed. Leo has had consistent feeding therapy with excellent therapists. He has made slow progress in the area of eating.
The thing with Leo is if he is learning a new ability, all other progress stops in other areas. So when Leo was learning to crawl or walk, he made no progress in feeding or occupational therapy. Leo has come so far in so many areas of his development with the exception of feeding. Leo's progress in eating was always been slow. In the last 6 months, Leo discovered his brothers ate food. His brothers are his role model. Whatever they do he will attempt to do. A light bulb went off that if his brothers were doing this eating thing then perhaps he should too. Leo now lets things in his mouth. He wants to eat. He will pretend to eat. He actually gets food into his mouth. The problem is that once it is in his mouth he doesn't know how to move it to the back of his mouth and swallow. So everything comes right back out of his mouth. Leo will sit at the dinner table and "pretend" to eat, putting a spoon up to his mouth. Leo is now a walking choking hazard as he has the desire to eat, but doesn't grasp the fact that he doesn't know how to eat.
Leo has had numerous surgeries in his short life. He has however been stable for the last year since his heart surgery. No surgeries are on the horizon. He has been seizure free for the last 4 months. All of his doctors (he has 8 plus specialists that follow him) and therapists agree that the time has come for Leo to learn to eat and that an intensive program is the way to go.
Now is the time. Homeschooling work is concluding. Jeremy will be finishing the semester from teaching. He will be teaching a summer session but will have some flexibility with his schedule to be home more. Leo is ready. Leo wants to learn to eat. We know once a week therapy is not cutting it. Leo needs feeding boot camp or as a friends daughter called it "chewing camp". We need to be able to focus on eating with no interruptions of life. Hershey has an intensive program that has come recommended to us from various doctors and therapists. They believe Leo can learn to eat. They also have the ability to safely decrease Leo's g-tube feeds. (Leo has never felt hungry) They also can be more daring in what they offer him to eat as I am always on chocking hazard alert.
Will Leo ever lose the tube?
Our prayer is that enough progress will be made during the intensive program that Leo will be able to eat by mouth and that his g-tube feeds will be considerably decreased if not stopped all together. Leo takes a few medicines and the reality is that it will take time for him to be able to take meds by mouth. We would love to someday be g-tube free.
It is our goal that someday Leo will be able to eat watermelon and not just pretend to eat it.