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Posted 2015-08-17T00:52:21Z

Finally home!

We are so happy to be home! We stayed all day Saturday for continuous feedings. They gave Annie about 15mL per hour for four hours and then keeps upping it until we were at 50mL. This morning we then stopped and let her digest that then we went ahead with 120 mL over thirty mins. She did good with that so we were discharged!!! Annie has a PEG tube into her belly. It has a disc inside her stomach that keeps it in place and a little white arm that hold the tube in place on the outside. She then has a big sticker thing that holds it on her skin so any accidental tugs don't pull on her site. We have to clean the area and twirl the tube twice a day. It's like having newly pierced ears and you don't want it to heal in one place but to move it around. In about two months she can get a MIC KEY button and that is very small and flatter-so less noticeable through clothes. Annie and Johnny face timed this morning and it was so sweet. They really love each other. They talk and wave and Johnny was trying to share his breakfast with her. And of course-they kiss goodbye! It was so good to get home. We all had a long nap and spend some quality time cuddling and playing. We resume therapy this week and are hoping that she will progress even more with the nasal tube out! Thanks for the thoughts and prayers! We are so happy to be home!!!

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