Weekend Update

This was a good weekend spent with family. My mom & my aunt Donna came to visit on Saturday and brought Jack & Coop with them. They arrived at the end of our therapy sessions on Saturday and got to see Lettie in action for a little bit. Mark & I then went to eat with Jack & Coop and run a few errands and then we decided to stay the night with them. My cousin, Aaron, lives here in Atlanta and is only like 15 minutes from the hospital and he has been so kind to offer us a place to stay when needed, so that's where we stayed Saturday night. Today my mom & aunt took Lettie to all her therapies and got the joy of feeding her the delicious keto food she has to eat. I'm not sure if I ever explained the diet clearly or just mentioned it so I will give you an example: 7 grams of pureed eggs, 23 grams of peaches & 17 grams of pure butter; 10 of Gerber chicken, 20 grams of applesauce & 15 grams of butter. The diet is low in carbs & high in fats. Her snack is usually applesauce & canola oil. On the keto diet you eat very, very small portions with lots of butter or oil which to me usually overpowers the taste of the food. She drinks about 2-3oz of a keto formula because you can't drink milk. We continue to struggle daily with the feeding. She was always a picky eater and this makes it even harder when you only have certain things you can feed her. The diet is very strict and you cannot deviate from it at all. For example, she cannot have one extra morsel of something that isn't on her menu for the day or it could throw her ketone levels off.

Other than struggling with the diet, she seems to be improving every day. She is more alert and her eye contact is improving as well. Her left side movement continues to be intermittent, but at least we have seen some! My mom & aunt took her on a little shopping spree in the gift shop downstairs and got her an adorable flower hat and new toys. They enjoyed spending time with her & I enjoyed spending some time with the other two! I wish I could share some pics with you all when Lettie is working so hard but we aren't allowed to take any photos in the gym or during any therapy sessions. Tomorrow starts back to a busy week and hopefully continued improvement. I want to thank everyone who has been specifically praying for Lettie's feeding issues. Today she took her bottle quicker and easier than in the past and I know we owe it all to answered prayers from God. We are grateful for all those who continue to keep us lifted up and saturated in daily prayers. We still need all we can get. I can't believe it's been over a month since this whole process started and to think we thought we'd be home in 4 or 5 days post-op. Just goes to show how God is always in the drivers seat even when you think you are.