Andrews update is that he is now 15 years old. G-tube feedings are 12 hours a day. He attends high school and is in the drum line in band. He became much more social after discontinuing feeds during school hours, & upon starting high school. Previously, enteral feeds were run 24 hours a day. Suddenly, he realize he has an appetite and his food choices and tolerance have increased and he eats six times a day. He had always felt that short bowel syndrome walked in the room 10 feet before he did, and was very self-conscious, but now his life has been freed up a little bit and he is taking advantage of every opportunity that comes in his path.
Has began playing drums in the church worship band and attends campus life meetings at high school, he is thankful to have a story to tell and he is now able to see the blessings in his life and not just the struggles and he is able to share his progress with others at local children’s hospitals in our area. His goal has always been to give encouragement to new parents with babies with short bowel syndrome. He has recently attended several summer camps sponsored by the Paul Newman foundation for G.I. kids and has given others who were hopeless some enthusiasm for helping others and focusing on being best they can be.Instead of seeing the doctor monthly as we did when Andrew was young, he only goes twice a year for weight checks and every six months for physical exams.
At 15, he is finally mature enough to participate in managing his enteral pump and is enjoying independence in this area.
He just got his learners permit and has found that the car’s center console holds his enteral equipment perfectly and he is excited about driving to Children’s Hospital for the first time for an appointment in a few weeks.
Lots of opportunities in life are opening up for him and he is excited. Mom and dad are definitely proud to see his life finally beginning beyond the diagnosis. It has been a long haul for the entire family and we wondered, at what age he would take charge of his own life, or even if he would be able to. Finally, at 15, we are seeing the changes. He learned to tie his shoes two weeks before school started. He has decrease the number of special-education classes he is in and he is mainstreamed now in a normal classroom.
We have learned on this journey that patience is definitely a virtue and that in time each child will prove their potential.
Perhaps not on our timeframe, but certainly on theirs, the way God meant it to be. Life is not perfect, but it is definitely moving forward.