The second step came in 2005 when she was about five months old and it was clear she would not regain her ability to eat by mouth anytime soon. She had a MIC-KEY button (brand of gastronomy feeding tube) surgically placed directly into her stomach. The MIC-KEY button is a short plastic tube with a cover we can open and close. When open, we connect another tube and slowly pour her food directly into her stomach. She is able to eat small amounts of very soft foods by mouth but without the MIC-KEY button, she would not get the nutrients she needs to survive.
Every three months, Allison changes the button. She removes the old button from Livy’s stomach and places a new one in. If we were not able to get the button back in, the hole would close within hours. I have replaced it a few times and and it still amazes me that this small device keeps her alive.
When we share this information with groups of kids, I often joke and tell them Livy never complains about eating her fruits and vegetables. She likely has the best diet of any of us. But I’m a foodie and I wish she could eat more by mouth. Eating foods and connecting their smells with events in our lives is one way we experience life and build memories. Unfortunately, Livy’s food does not smell appealing. But it keeps her healthy and growing. That of course, is our biggest concern. Although she cannot associate the smells of the foods she eats with her life, she is forever built into every memory we have of eating together as a family.