This was supposed to be the day the Benedicts had been waiting for since their baby, Jameson, was born nearly four months ago.
"Jameson was supposed to be discharged today, but of course as usual he acts up and does his little funny things and says I don't want to go yet," says Benedict.
Jameson was born with limited brain tissue and a stomach that is not properly attached. He's been fighting for his life at the Neonatal Intensive Care Unite at Crouse Hospital. After rejecting the surgery three times, doctors inserted a permanent feeding tube into Jameson last week and told his parents they could take him Friday.
"They wanted us to get him home as soon as possible just to be comfortable because they're not too sure how many more down hill slides he's going to survive," says Benedict.
Even if it means taking him home to die , the Benedicts want to be spending every waking moment with their baby boy.
"If it means we get a week, a month, a year, 10 years, however long he has with us we just want to be able to spend that time with him and not in a hospital room," says Benedict.
Thursday night, Jameson's feeding tube started leaking so doctors will continue to monitor him over the weekend.
"Were hoping early next week but then again Jameson tells us otherwise all the time so we just kind of go on his schedule," says Benedict.
The Benedict's family and friends have organized a benefit in Jameson's honor. It will be held Saturday August 3 at Village Lanes in East Syracuse from 3-7pm. Tickets cost $15 at the door. All of the money raised will help the family offset the mounting medical costs.