But titers go up and
down as fast as the wind changes sometimes.
We are always told to look at the big picture and not get too excited
when numbers are low. Our hope as
parents is for the inhibitor to register as ZERO! Wouldn't it be fantastic to
be at ZERO and only need factor VIII like a "regular person with
hemophilia"?
It sounds crazy but
if you living with an inhibitor the dream to "only" have hemophilia
is very real.
My
"Christian" was diagnosed with an inhibitor when he was 11 months of
age and his titer registered over 2,200.
I never knew the numbers went that high.
And here we are in his eighth year still living with an inhibitor and as
an added "bonus" an allergy to factor VIII.
And today I am
celebrating the number.
The number that
shows us where we are at in the battle, at least for today.
2.0
"Are you
kidding me?" I gasped as I heard the result over the phone. I think time stopped for a moment because I
had not dreamed his level would ever get to this point. It just didn't seem possible.
For the years of
pain, joint bleeds, hospitalizations, anxiety, fear, missed school and
vacations, PTSD and hating hemophilia, my Christian is having a good
season. A season of "normal"
for him that involves walkers, wheelchairs, adaptive sports camp, a bent knee,
hopping on one leg and a fifth port.
It's not normal for
most but we'll take it for the moment.
Hope is a good
thing. I have plenty of it.
