Homecoming Delayed

Our discharge that was planned for today is delayed. The past couple days Lily has been very uncomfortable, not sleeping and crying in pain at times. And this pain has brought her spasticity back. 🙁 Now we are trying to figure out what’s wrong. On her last 2 X-rays there has been a “foreign object”/a […]


Baclofen Pump Onboard

Lily remains in the PICU today. She is recovering and doing well. She is being kept comfortable with moriphine but hopefully that wont even be necessary by tomorrow. And now that she has the Baclofen pump her doctor has already eliminated her other spasticity medication and is weaning another one. And boy what a difference […]


A Guessing Game

Lily had her GI procedure yesterday afternoon as scheduled. But wouldn’t you know it that when the GI doctor went down to fetch the plastic disk in her stomach it was no longer there! So her stomach must have squeezed it into her intestines and it’s hopefully on it’s way out. Why can’t Lily catch […]


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 […]


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 […]


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 […]