Leo, Our Little Lion Man

    I don't really have new information on Leo, but I thought I'd do a "How are we doing?" post.      So Leo has surgery on Tuesday. We have 3 (not big) appointments on Monday. I will be going to Philly with Leo by train and Brad will drive there after work. We are staying the night in Philly and then going to be checked in at the hospital on the 4th. We are expecting to be there for 48 hours ish......     I would say that Brad and I both have our ways of trying to cope with not having control over this situation. I'm sure a lot of people can relate to wanting to control certain things. We are sobered at the thought of staying in the hospital again. Just not sure how to feel about it. Personally, I am not looking forward to recovery and Leo potentially being in some pain. Brad is processing more of what the feeding tube means as far as Leo's future, a lot of fears can come up. I am also expecting that when we are discharged it will be a similar feeling to when

      We went to the doctor this morning just to make sure Leo doesn't have any infections and his lungs are all good as far as this cold goes. He has been sleeping alright but a cough keeps it from being really good sleep. He's got a fever and he's been eating less. It's just an all around rough time for him right now.     He has lost weight since being sick. Please pray that he can gain it back as he gets better. And pray for all of us who take care of him to not stress out about it. There's only so much we can control. Along with that, pray that his eating will get better as he does and just be smooth.     AND, we scheduled his feeding tube surgery! Leo getting sick like this really did clarify for Brad and me that we want him to have the feeding tube. We want him to be getting the nutrition he needs and it's time to get more into him which hopefully the tube will do. There's a lot more than that in this, but, yeah. He needs some help and we want him to g

I wrote this on Saturday:     Leo barely gained weight in the last week. We are waiting to make the decision again.  Writing it out, I see it so clearly. But it's anything but clear. How hard to I fight for him to not have the tube, and how much is my fighting simply because I can't accept it? Writing that is so uncomfortable to admit to people. But that's where we're at in our house.     Our pediatrician very respectfully communicated that Leo's medical team is in agreement that he needs a feeding tube. And that we have also said we'll wait until x to see if something changes for a while. We've been waiting and we keep pushing it off.      But it is so hard  to make these decisions.      Our plan moving forward is this. We will check his weight on the 27th. Until then we will continue to feed him as we have, getting him used to larger amounts in a bottle at a time. If we do move forward with the feeding tube, we won't schedule it until January. We might

    We finally had the surgical consultation! AND he gained another 6oz after Thanksgiving! That's ONE POUND in three weeks! God answers prayers and we have abundant reason to celebrate.           The question is still feeding tube or no feeding tube. And our prayer request is very much for wisdom in making this decision. If I seem wishy-washy, I am--in a way. Basically, Leo has had some more drastic weight gain issues (as we have shared) but he has gained at a good  rate since we added the baby oatmeal to his diet. The doctors have made it clear that there is no right  answer right now. If he starts losing  weight then that would up the urgency of a tube. But especially with the recent weight gain, there's a lot of factors. There are issues that come with the tube as well. We are praying for wisdom in what Leo needs; we don't want this to be a decision based on our emotions regarding a feeding tube, but on what Leo needs to grow and develop.      We are thankful for the me