Wednesday, September 24, 2008


Our grandson has a mild/moderate case of hemophilia. It's a pretty rare, genetic "bleeding disorder".

Kristin's starting a blog about being a Hemophilia Mom.

We went to Kansas City last weekend with Kristin (and Trenton!) for a regional hemophilia conference and learned quite a bit about it. I was a little freaked out hearing the stories of especially the severe cases and what can happen to their joints and how expensive treatment is. It's pretty expensive... but Trenton shouldn't need it nearly as often as the severe cases. He has to be careful... no massive bumps or severe cuts or he'll really need the "factor" ... a protein that makes normal people's blood clot.

You and I have a 50% or better "factor" level. I think hemophiliacs have under 10%. 3-5% is mild to moderate. 2% or less is severe. And basically, if you get cut and you don't get "factor" infused, you run the risk of bleeding to death. It just won't stop.

We learned a lot and met other families and people with the disease. It's nice to have a support community to share stories and tips. Turns out they've decided it's best that they remain active -- musculo-skeletal health as well as cardiovascular health is important, plus the more they can be like other kids, the better off mentally they will be. They encourage them to play sports if they want to ... probably not football (though we did hear from a guy who was a kicker. Still he took a pretty good shot on a fake punt and couldn't walk for a day or so after that).

We got to go to a Kansas City Royals game with the group as part of the package. Met Matt and Brooke tailgating in the stadium parking lot, and then headed into the game. The Royals beat the White Sox 5-3, and we had a good time. A bus took us there and back to the hotel.

Vicki and I hit the Hereford House restaurant ... the bar area, and met this couple from Springfield Missouri. The man had graduated from Manchester College in Indiana where Vicki's grandfather graduated (and taught there we think) and mom & Aunt Fern went to school there -- Aunt Fern and Vicki's cousin Andie graduated from there as well. So we chatted it up with them for a couple of hours, went to bed, and finished the conference the next morning by asking questions of doctors and specialists and hemophiliacs. It was a good thing for us to go to.

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