He decided to replace it with a different style of shunt. He also connected the VP shunt with the lower shunt in an attempt to have them both function more efficiently. Ethan recovered quickly from this surgery. Ethan was able to respond to the physical therapy more quickly the second time around and is now able to stand up holding onto furniture or people for support and is learning how to use a special walker. The expectation is that he will be able to walk someday on his own.
Eating continues to be a problem.
We switched from TPN to a g-tube about a year ago and began the slow process of getting his gut used to having food going through it again. We are now able to pump in 8 ounces of formula in less than two hours without triggering vomiting episodes. We've been working on eating regular food too. His dinner may consist of chocolate pudding, pretzels, milk and cookies. He stopped getting fed orally at a critical time in his development and has essentially forgotten how to eat.