This week Leo's volume has actually gone down. He is experiencing some tummy, bowls and reflux issues. Tomorrow we go to his surgeon who takes care of his g-tube, reflux and nutrition. I am hoping we can figure out what is not agreeing with Leo and get him back on the upward track to eating orally.
The lack of measurable volume has been discouraging to me. We are trying to figure out the balance of feeding Leo and living life. We need to be able to do this long term. If this marathon is going to take years (yes, I said years) then we need to slow our pace and figure out how to live life and keep Leo moving forward with eating.
Yesterday, we spent the day together at a family water trampoline park. It was a lot of fun and we had a great time, but we had opted to leave Leo home with his nurse. Leo was too little to participate in any of the activities. This was a first for us. Leaving Leo home from a family activity and not home with a parent but home with his nurse. We totally trust his nurse and she had a fun day planned for Leo. We needed to be ok leaving him home with her. Leo would have been miserable with us. The heat alone would have made him uncomfortable. I would love to be able to say, we won't do a family activity unless all of us can participate but that wouldn't be fair to the rest of the kids. I know life isn't fair, but trust me when you have a brother who has multiple medical special needs your life needs a little crazy fun that doesn't involve g-tube feeds and seizures.
Tomorrow, Jeremy and Tyler leave on a mission trip with our Jr. High Church Youth Group. They will be gone 12 days and are headed up to Moose Factory in Ontario Canada. They will be serving in a VBS, construction projects, street evangelism and church services. Please pray for them as they travel and serve and for me and the other kids as we stay. Please continue to pray for Leo and his eating and that we find some answers at tomorrow's appointment.