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.
Tuesday, August 28, 2012
Argh!
Posted by Cazandra Campos-MacDonald at 9:38 PM 0 comments
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.
Posted by Cazandra Campos-MacDonald at 6:50 PM 0 comments
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....
Posted by Cazandra Campos-MacDonald at 7:15 PM 0 comments
Labels: inhibitors, target joints
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