Sunday, April 17, 2011

Happy World Hemophilia Day

I am not sure how to celebrate today, it never came in my Hemo handbook when Zander was born. But to all you out there...Happy World Hemophilia Day!! Don't get a bleed and party it up! Zander suggests celebrating with ice cream! (ps this pic is a couple weeks old...his bruise is looking much better now)

Tuesday, April 12, 2011

bloody lips and other mouth bleeds

When Zander started walking his hematologist prescribed him Amicar. We had Amicar before we had factor. Amicar is for mouth bleeds. I have had that bottle sitting in the fridge (no it doesn't have to be refrigerated but I choose too) and used it for the first time Saturday. We were at the park and he hit his mouth while climbing. We used the Amicar and it seemed to work pretty well. That got me thinking....what is it that makes the Amicar work. It isn't factor so what stops the bleeding. I got on the Internet and found the answer to my question, I thought it was interesting so I thought I would post. Amicar or aminocaproic acid is an important medication for anyone with a bleeding disorder, it works by preventing enzymes in the saliva from breaking down a newly formed clot. The medication allows the tissue under the clot to heal and prevents re-bleeding. *Info from

Friday, April 1, 2011

Not all bleeders are created equal

Since Zander's amazing technicolor dream face has been having such a fine run on our blog, I thought I'd throw a couple of auntie observations in there... because that's who I am.  (PS - my momtuition tells me we never really got the real story about what went on between the two 5 year olds, the 2 year old and the trusty retro rocket express).

You would think that since Nika and I have the same mother and father, and therefore, carry the same versions of the bleeder gene, that our children (whose genetic soup also has that same version of the bleeder gene) would have similar bleeding patterns.  Not so much.  Not long after Zander's wild ride, Harris pulled a dining room chair over on his head. Nothing.  
... Today I was changing his shirt  because it was covered in peanut butter and we were going into George's Giant Hamburgers (they got me successfully through 3 of my 4 pregnancies) and I was too lazy to unbutton that last tiny little button on the collar of his polo... which meant his head barely made it through... which meant he had to sort of snap his head forward to break free of his peanut butter prison.  Smacked his head hard, right on the little stair step thing on the side of the car.  Nothing.
...Fell in the shower because he thinks he needs to wash his stinky little toes with his dad's man soap while standing on one foot instead of just sitting and making a mess with the water like a normal toddler. Nothing.
... Tackled continuously.  I mean continuously people, by his 5 year old brother.  Nothing.
We do prophy 3 times a week and have had almost no break through bleeding (that we know of) in over a year, even with the bumps and bruises of toddlerhood.

My point is this - no two bleeders are the same, even when logic says they should be.  What works for one kid, may not work for another, even when their genes came from the same grandpa.  My sister does what she feels in her mom gut is best for her boy and I do what is best for mine... and we will both hide the retro rocket from now on.