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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
