Argh!

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.

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.

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....

He Did It!

I hope it wasn't a fluke, but my "Christian" sat completely still during his infusion on Monday!  We had the iPad set up, he was playing, the Emla had been on for an hour and he was completely distracted.  He said, "It didn't hurt!"

I sure hope this means he is getting over his fear of needles.  I am not sure what the next infusion will hold (we access his port once a week and infuse daily), but it looks promising :)

Taking Back Control

Last night "Christian" and I were on my bed having a tickle fest. All of a sudden he rolled off the bed and on his way down, hit the corner of my glass topped nightstand right between his temple and eye. I shot straight up, grabbed him and knew infusing was top priority. My husband was unreachable, so I knew I had to access Christian's port....alone. Thankfully, big brother "Lance" was close to help Christian stay straight up in his seat. We had a pretty successful infusion. I had to maneuver the huber needle a bit, and hit bottom! It was a great feeling to take control of infusing again. I've let myself get out of the habit of infusing and have let my husband be the major "infuser" and boy was that a mistake. Simply because I became complacent. I was losing my skills and my nerve. Today Christian developed a headache, so off to the emergency room we went to get a CT scan. Thankfully all was clear. He is acting like his 6 year old self :) Accidents happen. When you least expect it. It's amazing that sometimes it takes a good jolt to knock you out of complacency. Fortunately all is well. Are you becoming complacent with your child's bleeding disorder? What can you do to reel it back in?