Therapy, therapy and more therapy

Lily continues to work very hard in her therapies. She works 6 days a week, 3-4 hours a day. We met with a specialist this week and learned more daily exercises to do with Lily. We have so many activities to do with her that there aren’t enough hours in the day. So we have […]


Six Months Today

It was a beautiful, sunny afternoon (like today) when 6 months ago our lives changed forever. This day has been weighing heavy on my heart and head as it has crept up on us. I can remember vividly the chain of events like it happened a mere 5 minutes ago ( I know I will […]


Working Hard

We came home 4 weeks today. It has been a big adjustment for all of us but we are very happy to be together again at home. We have been feeling our way through the “system” of insurance, nursing care, home health supplies, etc. Lily has been busy Monday through Fridays with her therapies; most […]


Staying Put For Now

It doesn’t look like we are heading home tomorrow. Whew! Even if we were to be discharged we would fight it because we don’t have any equipment, medications, a hospital bed or anything set up at home. It’s all in the works but nothing is at the house. We have stuff to pack up, furniture […]


Preparing To Go Home

On Monday we moved out of ICU. Although we moved back to Miller West Rehab facility Lily is technically not in Rehab. Lily remains under a pediatricians care and still closely followed by her cardiologists and GI doctors. Our insurance company is not clearing her to return to Rehab right now. However she is still […]


Back to Rehab … We Think

Lily passed the g-tube plastic disk yesterday….whew! Glad we can check that off the list. Lily seemed to be more comfortable afterwards and had a restful day yesterday. She started off having a peaceful day today but she still is having some kind of discomfort. It’s anyone’s guess as to what is bothering her . […]


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 […]


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 […]