We are now looking into other options, including experimental medication trials. Tom and I have decided we would like to move forward with a domperidone trial, assuming Boston Children's Hospital is in agreement. Our GI doctor used to work with the motility docs at Boston and has been reviewing Ian's case with them. We will also have the opportunity to discuss other options such as a GJ tube, other medication clinical trials, and procedures such as Botox to relax the "emptying valves" and gastric pacers (at Children's National in Columbus, OH). A pyloroplasty will also be discussed, but is unlikely with Ian's history of dumping syndrome.
We would once again like to thank everyone for their love and support as we make these difficult decisions. There is no 'easy' answer and each one comes with benefits and risks. I pray that through knowledge, research, love, and good doctors in our corner.... that we will make the best decision for our family. Which of course, is not the best for everyone. Each child and family is different and we feel confident we will make the best decision for the next step in his journey. His path is always winding in uncharted territory and we are thankful have such a strong powerhouse to support such a powerful child. He is my hero!