Good News - Kyra gained weight! Before turning down the TPN and replacement fluid rate Kyra weighed 21 lbs. 10.5 oz. She is now at 22 lbs. 7 oz. WOW! WOW! WOW - check out her bowel! I know it seems I am bit too excited and I am. But when you get good news of ANY kind it is cause for celebration.

We have been working with Kyra on using sign language to communicate. She has successfully mastered the words "dad" and "more." Yesterday afternoon Kyra and I were able to take advantage of a beautiful day and went for a walk around the neighborhood. She was startled a bit by the breeze but that soon passed as she looked at the trees and birds with wide eyes. It is always an renewed sense of innocence when you watch a child smile and take in the little things we sometimes fail to appreciate. As we ended our walk Kyra was growing pretty tired, rubbing her eyes. It was clearly time for a nap. As I leaned over to pick her up from the stroller, Kyra repeatedly tapped her fingers together and verbally attempted the words "more, more." Once again Kyra so simply reminded me of the little things that turn into BIG moments in our lives.

On Monday we turned down Kyra's TPN and replacement fluid rate. Our hope is that she will maintain her weight or have very little weight loss. This is a good move for Kyra. TPN is hard on the liver. We must keep Kyra's liver in good shape in order to ward off a need for a transplant. We are very happy to know that Kyra is doing well enough so soon after discharge that we have this opportunity to turn down her rates. On our next visit to the Clinic we will find out how Kyra has tolerated this change.

Kyra has been receiving OTPT at home for two weeks now. It is so amazing how quickly her vocabulary is progressing. It seems each day she is saying a new word. She makes me laugh watching her hold her little phone while waving at the same time and babbling "he-yo" and "ba-bye" She is also beginning to use sign language to communicate with us.

Kyra is off of ALL pumps for three hours a night and is utilizing her time moving down the hall in her walker. She has not mastered moving foward but she is fast to push backwards. It is cute to watch her go to the end of the hall, she yells out and Mikahla turns her around. They repeat this several times a night. I am not sure who enjoys this game more - (them or me)