raising hunter

Sorry for not updating sooner....Hunter continues to feel better everyday. We haven't even given him any Tylenol for 2 days now and we are getting many more smiles from him. He still has the feeding tube in...he can only drink and eat very small amount so I think we are stuck with it until we go back to Cincinnati next month. Oh well. That's a very small price to pay I think..

I am a little concerned because when he does drink liquids, even when we have thickened them. His stoma (hole where the trach goes in) gets wet around it. I think he is aspirating a little bit. Usually food/liquid comes out the trach itself. I'd hate to have to stop giving him his sippy cup completely until the stent is out...especially since he wants it often. But if it's causing aspiration, I might have to. I am just concerned if he doesn't keep trying to eat/drink orally, he won't want to once the stent comes out...It's not that far from now but still..I don't know..Frusterating. Sometimes I think the single stage operation would have been easier. At least then we are in the hospital the whole time and letting the doctors handle everything. I feel like I am always second guessing myself at home.

We are still trying to get his feeding schedule down..everyday it's a little different. We wanted to not have him feeding on the machine overnight so we tried to double up during the day with feeds but that seemed to be too much so we are back to overnight feeds. So confusing!

I go back to work this Friday..It will be nice to get back in the swing of things..but also part of me just wants to be with Hunter until we go back to Cincinnati..Right now I only work 3 days a week so I've pretty much got it made. I am so thankful for a schedule like I have right now. My work has been good about getting me the approved time off for Hunter's surgery etc and follow up appointments.

Hunter carrying hisfeeding tube equipment in his little backpack...isn't he adorable...