Wednesday, November 25, 2009

OK so I've had enough!!!

We had a good day for a good chunk of the day today. We had some quality time with our friends, and made and decorated sugar cookies. The kids had a blast, and Mommy got some adult time. Thanks ladies!!!











Hard to think there is yet ANOTHER thing wrong with this cute little guy....

Then the stinky part of the day, the part where I say I AM SO DONE!!! After Sam's significant bleeding episode while we were in Children's Hospital last month everyone has been talking about testing him for bleeding disorders. Well that work up has now begun. They do a specific test called "Bleeding time" to actually determine how long it takes for someone to clot. A "normal" result would be 1.5 to 5 minutes, Sam's was 13!!! Are you kidding? Seriously? Can't we have a fear about something and have it NOT be anything wrong? Sorry I am on a tirade as we start to think about one more thing with Sam.
Essentially most people think of Hemophelia when they think of a bleeding disorder, which in essence is a deficiency in a clotting factor too. But the difference is that the one that they are now thinking Sam has is farther down the clotting tree, and therefore not as severe. The specific thing that they are testing for is von Willebrands Disease. Which is a Factor VIII deficiency. There are things to do that can treat it, and it can get better or worse with age. We are not sure that this is what he has, but this could be the answer to all the GI bleeding, abdominal pain, bruising, and the bloody noses which have just recently become an issue. This is just the basics but you can read more here: http://www.webmd.com/a-to-z-guides/von-willebrands-disease-topic-overview
We will find out the results of the other blood tests towards the end of next week. Please be praying for Sam, for wisdom and guidance for us and his doctors, and that we can get in to see the Hematologist as quickly as our primary would like. Oh guess what? He weighs 32.5 pounds now!!!

1 comment:

tiff(threeringcircus) said...

Wow.
Poor little man and I'm so sorry for him and for you. All the worry that you go through and it's just one more thing.

Hugs and hope that you get answers and help.