I think there became a running joke with our surgeon about Lydia getting out of the hospital. I told him originally that we had to be out of the hospital by a day in December. The reason was we were going to be on the radio for the Ronald McDonald's House and I wanted Lydia there. He said that would not be a problem, she should be home before Thanksgiving.
When that time had come and passed, he came in and said I bet you can't be home before the new year. And boy did she prove him, we were sent home December 30. We thanked our surgeon for giving her that challenge. She proved him wrong...she said she could do it.
I think often times on this journey when someone has said that she will not do it, she has done just the opposite. She is a determined little girl and she will walk the way she wants. I also think that it is God using her to prove His glory and grace. God is saying, just trust and I will show you, just have faith and follow and you will be blessed.
After Thursday's appointment I have to say that I have been filled with discouragement and frustration. It stems from many things, but mostly because I feel like I have little to no support from that specialty. It is hard to walk this journey alone (or feel like you are). While I know I am not alone, just the feeling from having little support from one of her caretakers is very frustrating.
So after yesterday's post, I was feeling encouraged. I have been praying before and after every one of Lydia's meal. Just thanking God for allowing us to eat, asking Him to use the food to her benefit, thanking Him for the bites she took and the drinks she had. I am reminding myself that I cannot do it alone. I am reminding myself that I am never alone.
We have decided on weekly weights for the time being. We want to make sure that we are doing everything to manage her weight the very best that we can. Today I was not looking forward to the weigh in because she has been sick and has not been eating very well. I thought for sure we would have a loss. I was prepared, but was dreading it.
However, to my surprise, she gained weight. Not much, just a quarter of an ounce, but she maintained and gained even though she was sick, even though she was not eating. She is once again out to prove the doctors wrong. She is making waves. I have to say that it is something awesome to be part of. God is working in mighty ways in and through her. He is testing and growing me. Without the valleys and the highs, I would not learn, I would not be who I am today. I also would not appreciate what He has given me as much.
I continue to pray that she stays on this trend and in the next week she gains even more weight. I pray that she continues to drink well. I do believe that this is the key to her weight gain. She is making better pea and just doing much better. I pray that she continues to stay healthy and develop as she has. I also pray that I continue to trust God and just be in His presence. And may she continue to prove everyone wrong. I know this is something so small, but it give me great hope!