I haven't written about it until now because we didn't really know what it was. Then, I thought that my kids should make the decision about whether this gets put out on the web. Last Saturday I woke up to my phone gently vibrating near my feet where it had been plugged in. I turn the ringer off when I sleep because of the Long QT Syndrome. I'd missed a couple of calls from my son. He and his family were at Childrens Healthcare of Atlanta, and had just been admitted onto the hematology floor. I rushed over with food and toys in tow and waited with them for the diagnosis. Jack has had a history of strange bleeds since he was an infant. Before Saturday the attempts to find out what was causing just led to frustration. Leukemia had been taken off the list before I got there. The question that usually lead to taking hemophilia off the list was asked and answered, but the blood test proved the answer to be deceiving.
"Is there a history of hemophilia in the family?"
They suspected a clotting condition called Von Willebrand Disease. That would make sence. We are redhead's; we bruise and bleed easily. It would have also been a better diagnosis. Yesterday all the test were in and my son and his family met with the hematologists again. Jack produces less than 1% of factor VIII. Jack is a severe hemophiliac. He will need frequent infusions of clotting factor for the rest of his life. My son is a paramedic, so these can be done at home. Still we are all reeling. I haven't stopped crying since I found out. This is serious. Perspective says it could be worse. Leukemia could not have been removed from the plate, and that would be worse. We saw a lot of kids on Saturday whose prognosis' are much worse. We will adjust. The families of children with type 1 diabetes adjust. It's just that for now, we are all in shock.