Another hurdle

Lily remains in ICU at Millers. We originally thought we’d be here a few days but it will be 3 weeks on Sunday. Lily has had a few more hurdles along the way. The jtube she had placed last Friday seems to be going pretty well. However she did catch a cold and has had […]


Moving in the Right Direction

Yesterday, doctors were able to replace Lily’s g-tube with a j-tube. Now her feeds will go into her intestine; bypassing her stomach. It will also bypass her pancreas which has been irritated over the last week (doctors still are not sure why). And after this morning’s blood tests we found that her enzyme levels are […]


From G to J Tube

We hoped Lily would be able to resume her feeds today but her pancreas continues to be irritated. The doctors do not want to make it worse by starting her feeds. They’re going to start sugar/vitamin/mineral water through her IV this evening. If her enzyme levels plateau it looks like we will switch Lily’s g-tube […]


Lily Remains in ICU

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 […]


Dealing with spasticity

First, thank you to everyone that participated in yesterday’s Bake Sale. I heard it was a huge success! I hope someone took pictures, I heard the homemade treats were incredible. I am so touched by everyone’s kindness and concern for Lily. Thank you from the bottom of my heart. Lily is still in the ICU […]


Back in ICU

Yesterday Lily was moved to ICU. She had been having episodes of vomiting, fever, increased heart rate and blood pressure and increased muscle tone/spasticity since last Monday- seemed to be linked to a bladder infection. And since it was not getting any better and was preventing her from therapy, her cardiologist and GI doc felt […]


Ups and Downs

This has been a week of adjustments, for all of us. New surroundings, new doctors, new nurses, new schedules, etc. Lily has had her ups and downs. First it was weening her off some medications because they felt she was too sedated, but maybe that was too aggressive because she went to the other extreme. […]


Millers West

Lily has had a busy week at her new home at Miller West. I had the opportunity to spend some time with everyone yesterday and get a feel for what the new chapter in Lils recovery is going to look like. After a call for visitors you all responded and that is exactly what we […]