In other news....
We are getting pretty excited about Easter around here. We are doing all the usual things like egg hunts, egg decorating and picking out cute Easter dresses and outfits. But more importantly, we are remembering the Resurrection story, talking about Jesus and trying to keep the Real Reason for Easter the top priority.
But holiday or not, there is regular life that must be tended to. Today we took Lucy BACK to the hospital about her G-tube. I'm ready to pull my hair out! She's got the granulation again around her entry site and its very painful and bleeds. She is also having trouble tolerating her feeds past a certain rate of infusion. So we got some great minds together and tried to come up with a game plan. As with most things along this journey, Lucy is the first patient at St. Jude to have this granulation issue. Many patients have had the granulation, but none have had the recurrance like Lucy. It is so frustrating!
The real answer is that Lucy needs to start eating, gain 10 pounds and then we can remove the tube. Easy peasy, right?! I only wish......While we were at the hospital Lucy got to help hang her art in E Clinic. She was so proud and so were her Mommy and Daddy.