February 23, 2018
Dottie continues to make progress. We know this process will take awhile to figure out, how much food can she take in orally and in her g-tube. She was up to a 2 ml per hour continuous feed to her g-tube (this meant no draining out of the g-tube) with an additional 5 ml orally every 3 hours. It had only taken a few days to get her up to this amount and her stomach felt good to the touch and she was pooping. However, that was too much for our little girl. She started throwing up and then got very sleeping and lethargic, usually when she wakes up for even a few minutes she's wide eyed and happy, but she wasn't acting this way. She began spitting up and throwing up. After throwing up several times one night she was taken off all milk. She stayed off milk for at least two full days and then started again at a slower pace. First, she got 1ml per hour continuous through the g-tube. After a day+ they added 5ml twice a day (about every 12 hours). This morning they increased her to 1.5ml per hour continuous and she still gets the 5ml twice a day.
We are thankful for the wisdom of our surgeons, doctors, and nurses. Together they continue to figure out the best ways to help Dottie progress.
Our hearts continue to be filled by all of your prayers and thoughtful gifts. I know we have not given proper "thank-you's" to everyone but please know we have received your gifts and kind words and they help us to keep going.
Seth and Liz did go to Mongolia this past week, you may have seen pictures. Liz was an incredible help since I was unable to go with Seth. Together they went through all our stuff, sold or gave away a lot of it, and brought back just four suitcases full. We have only one item left to bring back. Seth met with the leadership team to go over some final details. They had a team dinner where Liz got to meet all the amazing people we worked with and Seth got to say goodbye. Thanks to those of you who checked up on me while he was away.