We brought Levi home today. Only for a while but he managed a home cooked meal. Weight is down despite his best efforts to eat plenty. So today he was advised to try an NG tube. Levi had one for the first 6 months of his life so it was nothing new for me. Unfortunately Levi was unable to tolerate it and it was removed after about 20 minutes. He was devastated that he couldnt manage it and it really has had an impact on his mindset. I wish he knew how brave he actually is. This disease is starting to take hold. And I hate what its doing to him. Today was a bad day. I just hope tomorrow is a little better. Waiting to hear about a plan B. Still no call.
Posted on: Mon, 05 Jan 2015 23:18:42 +0000
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