All You Need

My "Christian" is starting to realize he is different.  Something happened at school this week that made him see that he can't run as fast and far as the other kids.  When he came home from Denver with his new brace his entire class was fascinated and excited for him.  I mean, Mater and Lightning McQueen are on his brace....it is way cool :)

His teacher called me, told me he wasn't himself and she was a little worried.  See, my Christian is a "social butterfly" so for him to be withdrawn is a pretty big thing.  By the time my husband and I got to the school, things were a little better.  It did my heart good to see him break into a great big smile when we walked in the door.

Sometimes that's all you need. 

To know you are not alone.

Catching it Early

When I got the call from school that "Christian's" ankle was bothering him after recess, I immediately went and infused him.  It was the end of the day, so I brought him home early.  The HTC recommended dosing with Novo every 2 hours.  Normally, between me and the hubs, this would work, but hubby has been extremely sick.

Dosing every 2 hours alone makes for a very tired Mommy.

The next morning, I called the HTC and told them I would like for someone to take a looksie because I really did not want a repeat of the most awful bleed of all time from this past November.

We have been admitted, lots of NovoSeven and Christian is doing great!  We seemed to get ahead of this bleed and nipped it in the bud early.

We should be heading home in the morning :)

So far, so good

The New Year has started rather quietly where hemophilia is concerned. So far, so good. We are trying to get to Denver to pick up "Christian's" brace. I hope within the next two weeks we can get there.

All is Well

All is well.

My "Christian's" ankle bleed has finally resolved, a month later.  We have enjoyed our Christmas and are looking forward to the New Year as we begin with an inhibitor titer of 13!  The possibility of immune tolerance is actually within reach!

I hope that you are well, enjoying the holiday season and are looking forward to what 2012 may bring.

Blessings to you,

The Best Thing We Ever Did

I took "Lance" and "Christian" to the HTC in Denver this past week.

It was the best use of time and money I have ever put out.  My husband and I decided that the boys, especially Christian, needed another consult/opinion since our HTC in Albuquerque in undergoing many transitions right now.  With this inhibitor, Christian needs to be followed closely, so we finally were able to get up to Denver.

I have been involved with three previous HTC's since Lance was diagnosed and this I can't begin to tell you how amazing this visit was.  Complete, thorough, not rushed for time, beyond professional...and warm and welcoming.

Christian was fitted for a new brace for his ankle, and the Physical Therapist, Sharon Funk, was incredible!  I learned so much during the PT portion that it was almost overwhelming.

The amazing part of this trip is that Christian's inhibitor was tested.  The last time it was in the mid 40's...now it is…13!  I could hardly believe it!  Lucky 13!

I know that the "number" is not the most important part of dealing with an inhibitor, because it can consume you when the level goes up.  But you know what, we are celebrating!

This inhibitor battle began in 2006.  It's been a long haul, and it may continue to be quite some time before we get to "0", but it's the little successes that keep you going.