We are home!!! Everyone survived 5 weeks of being gone and 5 weeks of having us gone. We finished off the intensive program strong. This week Leo began taking 2 ounces in one sitting. He has worked so hard. Like so many things, eating has not come easy to him. He has to work hard. Leo is my hero- he is an inspiration to so many.
Today was the last day of the intensive program. The hard work starts as we try to keep this going and moving forward in the "real" world. The balancing act of keeping at least 5 solid sessions going a day begins. More sessions equal more practice which will will lead to a stronger swallow and more volume. The challenge will be to get Leo to eat constantly in a chaotic, crazy environment. It is one thing to eat in a nice quiet office with no distractions and quite another to eat in our house.
We will return to Hershey on June 22nd for our first follow up session. Leo is now on 4 g tube feeds a day, which means we need to get in an amount orally that is equal to one feed. When we return in 2 weeks, Leo needs to not have lost weight.
We would appreciate prayers. Prayers that we keep going strong. That Leo continues to move forward. Prayers that Leo's volume continues to increase and that his cooperation continues. Thank you for continuing on this journey with us.
Leo and Miss Whitney.
Leo and Dr. Williams
Leo and Miss Kathy