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 . […]
09-22-2012
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 […]
09-20-2012
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 […]
09-15-2012
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 […]
09-13-2012
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 […]
09-12-2012
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 […]
09-11-2012
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 […]
09-06-2012
Bake Sale
BAKE SALE for Lily WHEN: Tomorrow, Friday, September 7th WHERE: Our Lady of Fatima School TIME: 12:00 PM & 3:00 PM The loving Parents of Fatima Board is hosting a Bake Sale for Lily tomorrow. Students can make a donation in exchange for yummy homemade treats during lunch recess and after school. If you’re not […]
09-03-2012
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 […]
08-27-2012
A Day of Mixed Emotions
Today was a day of mixed emotions. Charlotte started first grade today and Lily wasn’t with her friends starting fourth grade. Taking Charlotte to school was extremely tough, I’ve been anticipating this day for weeks. I kept it together for Charlotte; she was so excited to return to school, so excited to have Mrs. Levinson […]
