February 2014 was a significant time in the life of my family. For years we saw our younger son regularly suffer bleed after bleed. He suffered from an inhibitor and an allergy to factor. Nothing seemed to help. We felt lost and unsure about how to continue seeking…
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When you’re a parent to a child newly diagnosed with a bleeding disorder, the immediate concern is for your child. What do I do next? Will they be OK? What will life look like from now on? You find yourself searching for answers and developing a support system…
Baby Cittie turned 2 months old on March 18. It’s been a whirlwind couple of months filled with sleepless nights and endless smiles. Cittie is thriving; she’s doubled her weight, put on some chub, and loves to say “heeeeeeh” in an adorable coo-ey voice. Over the past…
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Be Careful What You Say and Do!
My wife and I learned early to be careful when discussing the struggles we share in caregiving. Sometimes we get tired and want to complain, but we must remember that our children hear and see us. If we say something in total frustration, our children might blame themselves…
The unimaginable has happened. My youngest son, Caeleb, had his port removed. Of course, when someone with a bleeding disorder has a port, it’s usually not forever, so why is it a big deal for my 13-year-old son? This was his seventh port. He has had…
New evidence suggests that a parameter called FVIII-EC50 has potential as a new way to predict the response of an individual with severe hemophilia to preventive treatment with FVIII, according to a small study. The study “Evaluation of EC50 of factor VIII as predictor of prophylaxis efficacy in patients…
So, we are in the car. Everyone is in their respective seats. We are all looking forward to our vacation. The car is filled with suitcases and excitement. Then, I hear the dreaded sentence from my youngest boy: “Daddy, my leg hurts.” My wife and I look at…
Looking at myself now, my younger self never would have expected me to be where I am. Recalling my younger years, I remember having anxiety about being alone when I grew up. I always thought I’d have a hard time finding a partner and that my dating life would be…
“I’m so sorry. What can I do? I am here if you need me.” When we hear bad news about someone we love, most of us struggle to find the right words to comfort the one hurting. Sometimes, the best words are no words at all. It just…
Every family speaks their own language. Mine certainly does. It is like a secret code that is unbreakable outside of our house, used to inform family members how we feel about an issue or event. It is done so subtly that no one else is aware of the information…