I’m not sure where this is going, so, bear with me.
As I think back on the past two months, it seems like a blurry dream playing out in my mind. Some days I’m pretty good at putting reality out of my mind and pretending it’s only a dream. Some days I remember to be present in every moment, because none of us knows when that moment may be the last.
Other days I’m consumed by worry and sadness. I go through the day in a fog, crying in the bathroom and avoiding eye contact so as to avoid the “How are you’s?” — because, really, how am I? Well, I’ve been better.
Some days I’m just mad. Our life was good, not perfect, but good. Now our life is good, but there will always be worry in our minds. Always.
I guess I should start at the beginning. In November, at the kids normal well-child visits, we requested their cholesterol levels be checked. We’ve done this in the past as hereditary high cholesterol (FH) runs in both of our families. In the past the tests came back normal. This time they came back anything from normal. Ian’s total cholesterol was over 300 and this is a kid who’s diet consists mostly of bread, peanut butter and protein shakes. Avery’s cholesterol was even more alarming. Her total cholesterol was just shy of 800. At age S-I-X. The doctor thought maybe there was an issue with her bloodwork and requested we have it done again as soon as possible. Well, there was an issue alright.
We were referred to Dr. Peter Kwiterovich, a doctor specializing in pediatric lipidology at John’s Hopkins in Baltimore. I was instructed to get an appointment with him as quickly as possible. After many phone calls and a quick google search, I learned Dr. Kwiterovich had passed away several months prior. I was eventually able to track down the Lipid Clinic at the Johns Hopkins Children’s Center and get an appointment with another doctor working within the clinic. In December, we drove to Johns Hopkins and spent the better part of the day meeting with a doctor and nutritionist. It was then we learned that Avery has Homozygous Familial Hypercholesterolemia (HoFH). In short, Jason and I each carry one gene which gives us hereditary high cholesterol. This is called Heterozygous Familial Hypercholesterolemia (FH) . Avery inherited a gene from each of us, thus giving her the much rarer form, Homozygous Familial Hypercholesterolemia (HoFH). More about what these mean in upcoming posts.
Some of you have noticed my unusual behavior the past few weeks or months. You may have noticed puffy eyes, sunglasses on cloudy days, strange posts on my Facebook wall, or seen me sobbing waiting to pick up Owen from preschool. Many of you reading this will be learning this news for the first time. I hope this will help explain.
Thank you for sticking by us as we start a new chapter in our lives.
/michelle
An article on the late Dr. Kwiterovich:
Avery's Fight 