Feeding Kingston

While Kingston continues to improve in some areas, he struggles in others.  He was able to have his lip and nose repaired in May 2010.  The surgeon is fantastic.  The lip is barely noticeable now. Kingston's palate has been scheduled three different times and cancelled just days before due to the fact that he is "failing to thrive".  Kingston has been fed through a G-tube since he was about a month old.  His palate is so severe that he is unable to swallow anything, not even a drop of water.  He has had a fundelacation (spelling?) which is suppose to stop him from retching.  It has not helped, he has not be able to keep down most of his food daily.  Kingston has in home nursing care for 5 days a week, which helps give Terril a short break.  She is on the phone constantly with schedulers and nurses.  It has become a full-time job for her.  Terril has gone weeks on just a few hours of sleep a night and most of that has been quick naps in between Kingston's random sleep patterns.

Kingston has never passed a hearing test, yet lately he can hear us and he is starting to respond.  He has begun to say one syllable words like mama and "mo" meaning more. What wonderful miracles continue to amaze us on a daily basis.  We are truly blessed!