We have our evaluation at Shriners hospital tomorrow at 10:30. I am anxious and excited. I am interested to find out what they can and will do for his foot and hand.
As far as eating goes. I'm just going with my instinct. I think he's doing good for the most part, we had a nurse come by to teach us how to run the feeding pump yesterday. But I haven't used it. I usually just push whatever is left over (if it's enough to worry about, usually 20 ml or higher) by myself. Its never really a lot so I don't think using the pump is worth it because he eats most of his bottle. I'm hoping on Thursday when we go see the pediatrician I can talk him into getting rid of the feeding tube. I really don't think we need it. I think it's a matter of Maximus might just be on the smaller side. Maybe he will bulk up later, maybe not. But I'll tell you one thing he's not starving. And he IS gaining. I hope he's 10 lbs when we go Thursday. But I think that's hopeful wishing. I feel like as long as he stays on his curve and doesn't go off or under then he's fine. Am I wrong for thinking that? Am I wrong for going with my gut feeling? I hope not, I wouldn't want to do anything to jeopardize his growth or development. But with this syndrome he might just be a little guy. I am feeding him at least 70 ml every 3-4 hours and he eats most of it. I guess we'll see where he's at Thursday and what the doc says. I'm hopeful for good news. Thanks for all those still praying. I think I'll try to make it to the temple this week too. I need it!
My little guy is currently sleeping in my arms while I rock him. He's so cute! I just love him.
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