A Huge Realization

It was great to be back at the NHF Annual Meeting this year. We were not able to attend last year, so we have really been looking forward to Chicago. We had a great time, did lots of walking and enjoyed catching up with old friends and making new ones.

My husband and I had a huge realization. We were knocked out of complacency with our little "Christian." His target ankle is just in bad shape. He struggled with endurance and getting through the airports on the way home was really difficult for him.

When you are in your familiar surroundings, home, school, church, etc. things look a certain way. Then when you get out into the great, big world, sometimes things are more apparent. It is critical that we get "Christian" to the Denver HTC for an appointment. We were hoping to wait until January, but it is just not in the best interest of our son. I am waiting on a call this afternoon to confirm our appointment for December 14th.

I feel so alone with our HTC in Albuquerque being in such a big mess. Lack of staff and passion for the program is affecting our state in a huge way. Thankfully we have a nurse with tons of passion holding down the fort, but you never know what you are going to get in the way of physicians and it is scary.

I am writing my questions down and preparing for our visit in Denver.

In one of the sessions this past weekend, a mom who has a son with an inhibitor said, "Having an inhibitor is like hemophilia on steroids." That made a lot of sense to me. I just realized how specialized our situation with inhibitors truly is.

All I can do is keep in mind that my little guy struggles more than most. I need to not get frustrated and at the same time not coddle him.

That is what is truly difficult.