Lily’s Journey Six Years Later

It’s been nearly 4 years since I last updated Lily’s site.  It’s hard to count the numbers of hurdles and milestones and put them into a single post. So much has transpired over the last four years. So many changes for Lily and for us. She has grown and blossomed into a beautiful young lady […]


Keeping the Momentum

Monday was an emotional day. It was a day of raw emotions yet it was also a day of happy ones, too. It’s hard to believe a year has passed since Lily has talked, walked, ate a meal, and just been a typical carefree-kid. We decided to make July 8th not only a day to reflect […]


Milestones and Prayer Request

We are approaching Lily’s 1-year anniversary of her heart attack and brain injury, in fact it’s only 4 days and a few hours away. My sister, Lindsey, has designed a web site (which you are reading this on) for Lily and it will launch on Monday, Lily’s anniversary. There will be additional photos and video so […]


An Amazing Girl

Today was a a great day! As everyone knows Lily has been working extremely hard . . . everyday. Some days for up to 4 hours! Well today was no different but she had a breakthrough session. During her 3-hour therapy session she was able to finally hold her trunk and her head for an […]


Genetic Test Reveals CPVT

Well, one of the days we have been waiting for finally yesterday. We finally received confirmation from Lily’s genetic testing whether or not her cardiologist’s suspicion’s were right; if she has CPVT (Catecholaminergic polymorphic ventricular tachycardia). Her results were POSITIVE. I’m relieved that we now know for sure but terrified if her little sister Charlotte […]


We Have A Probable Diagnosis, CPVT

Lily came out of her procedure at approximately 4:30 this afternoon. Doctors found that structurally Lily appears to have a normal healthy heart. They weren’t able to pinpoint a particular area of her heart that points to the cause of Lily’s tachycardia which further suggests what her cardiologist initially suspected that Lily most likely suffers […]