Tuesday, August 28, 2012


Our trip last week to the Denver HTC was great.  They really do it right over there.  Dr. Manco-Johnson and her team are absolutely top notch.

Yesterday I received the call....inhibitor results.  It's 28.  ARGH!  I had a feeling it was lower....not sure why, but I really thought it was down. 

I know, it's not about the number. but the treatment and most importantly the person being treated.  But still...I wanted that number down so we could begin Immune Tolerance. 

We are getting closer.  The reality is that this inhibitor may be around for quite some time.  "Christian" was diagnosed with his inhibitor when he was 11 months old and he is now 6.  It's been a long, difficult time, but I am grateful that things are going as well as they are right now. 

You never know what the next day will hold....bleeding disorder or not.

post signature

Sunday, August 19, 2012

HTC this week!

My "Christian" did a super job infusing Friday!  He sat still and did not cry and wiggle :)  He was so proud of himself.

I am looking forward to our trip to the Denver HTC this week.  We'll have a great check up, get his inhibitor level tested and get his brace adjusted. 

I'll be back with more.

Hope you are finding ways to incorporate your bleeding disorder into your life and not let it control you.  Easier said than done....but very possible.

post signature

Monday, August 6, 2012

Inhibitor Summit - San Diego 2012

We just returned from the Inhibitor Summit in San Diego, California.  We had a great time :)  We made some new friends, heard a few very useful nuggets of information regarding hemophilia and inhibitors and even had an "ah-ha" moment regarding "Christian's bad ankle.  Arthritis maybe…..?  I have a long list of questions/comments to take to our next HTC visit in a couple of weeks.

"Christian" loved "hotel school" (the childcare program) and "Lance" was able to network with young men and women his own age and talk openly about hemophilia.

It was time well spent (and we even had some time to play).

If your family is affected, or ever has been affected, by an inhibitor, check out the Inhibitor Summits.  They are fantastic events.  I am already looking forward to next summer :)

More to come after our HTC visit....

post signature