Tuesday, March 5, 2013


Hello everyone and so sorry for the delay. We are HOME in MN and Lilliana is doing very well. Greg (aka prince charming) actually drove all the way to Boston to pick us up and then drove us all the way home! There was an overwhelming amount of sickness going around the Yawkey Inn (shared house we were staying in while in Boston) and I felt it was VERY important that we got out of there ASAP.

We have had one ER visit after being home as miss Lilli was coughing quite a bit and also a regular follow-up appointment with her cardiologist. Her X-rays still show smalls amount of fluid in her lungs but overall she is holding her own! Thank goodness this low fat diet seems to be keeping any khylo build up from requiring a chest tube.

Things are looking up and going in the right direction :)