Sundown Syndrome

Lily rested peacefully last night and remained relatively quiet throughout the day. She has not had an arrhythmia episode in over 24 hours (thank you God!). But honestly I hold my breath and hope I’m not jinxing her by typing this. You see the evenings seem to be the most difficult for Lily. We see her more agitated and it is harder for her to remain calm without medication. One of her doctors referred to this as a “Sundown” syndrome. For Jim and I the the nights are extremely long, we just keeping praying she has peaceful sleep. Tomorrow she is scheduled to have her g-tube procedure at 1:00 PM. We are thankful her doctors decided she was stable enough to proceed because we know she can’t wait to get that darn tube out of her nose. It is rubbing her throat raw and is a constant irritation for her. These last few days have been very tough as I previously wrote. But our Lily gave us renewed strength and hope once again. During physical therapy today Lily worked with a giant exercise ball. Her therapist had her kneeling on the floor wedged between herself and the ball while her body was pressed up and over the ball. Her arms and head were resting on top of the ball. This was an exercise to stimulate her body and trigger muscle movement. And sure enough she made us proud. Right away she lifted her head off the ball! With concentration and  determination she continued to do it a few more times with rest periods in between. This took an extreme amount of effort on her part and she once again made us so proud.


Thank you for all of your prayers and support, you keep us going. Thank you to those family and friends giving Charlotte such loving care when we can’t be with her. We are so thankful.

God Bless,
PS. Auntie Lindsey took a few pictures of her PICU room, I thought you might enjoy seeing them.

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