Lily remains in ICU. She has been in ICU for over 10 days. Although her UTI is cleared up and her heart has been stable her feedings remain an issue. I ask of you for specific prayers for her GI resolution. Her body is not tolerating increased volume/consolidated feeds. Also, her pancreas cells are irritated due to the increase in spasticity medication, she also has higher enzyme levels. Therefore her feeds were stopped yesterday to give her pancreas a break. It seems to be a mystery to the GI team and I pray for their guidance to figure it out.
Also, we decided to not proceed with the implantable pump. We continue to try to do therapies….she is on a limited schedule since she is in the ICU. They do come to work with her but we can’t take her to the gym or leave her room. So we MUST GET HER BACK ON TRACK to get her in the gym and take full advantage of therapy. Thank you for your endless prayers for Lily. I ask that when you pray for her that you visualize her talking, walking, running, playing, riding horses…being her “everyday” self. Lily will “see” what we see . . . I believe prayer can manifest this.
I added some photos of Lily to remind you of some of the things she loves to do . . . she is a “full of energy” and “spirited” girl.