A couple of incidents

Here are a couple of links to my other blog posts about Will's ER visits for the year. May 2008. July 2008. Camp.Oct 2008. Nov 2008. Luckily this month, so far so good. Will is nice and healthy which also means he's big. He loves taking baths and to help unecessary bonks and bruises, we purchased a couple of items from One Step Ahead. A blow up tub cushion that surrounds the inside of the tub. A tub mat to help with slips and a cooshee tub guard which comes in two parts. One that acts as a kneeler for me and the second goes over the tub track to protect my arms, head bonks and any injuries getting in or out of the tub. Way more comfy than using towels! I also found this genius of a woman who has a line of padded kneed pants called Bruzwear. These are perfect now that Will is crawling and cruising.

First few months

The first few months were tough. I was emotional. I tried to read everything I could on Hemophilia. I read the good and the bad.
I would scan Will everyday for bruises. I would be on pins and needles everytime he would cry. I just didn't feel prepared. I didn't know what to expect. Every bruise was just so unatural. I don't think I will ever get used to seeing those big, ugly hemophilia bruises. Then our family did 2 of the best things we could. We volunteered at the Puget Sounds Blood Center's "Golf Gets In Your Blood" golf tournament and auction and we went to Camp Ivy. A weeklong family camp for families with hemophilia. We met people and we learned. A lot. I learned not to be afraid of it. I learned from moms and kids and adult men AND women with hemophilia. NOW I felt more prepared. Summer became Autumn. I had a DNA test done and although it was basically inconclusive, my clotting levels showed that I too, had a mild form of hemophilia. My clotting level was at 34%. This sure explained a lot. It didn't explain how wickedly hidden this gene had been up until now. I have a brother who is unaffected and my mom found out she has a 32% clotting level. Three years ago she had a heart attack and had 2 blood transfusions. All before knowing how hemophilia was affecting us. Today we just take each day at a time and try to make things normal and safe. Some days are more challenging than others but we can only continue to learn.

getting up to date

So let me catch you all up to date. May 2008 found a huge bruise on Will's chest. Realized it was not normal and got in to the pediatrian asap. Luky for us our's was available. Cause it would not have been pretty if we would have gotten any ol' doc. I explained that the bruise was new, and didn't know how it got there. Also told her about a couple of other incidents. At 8 days old I took Will to the ER for a pku prick that wouldn't stop bleeding. I also called the nurse after his first set of vaccines when I noticed the area was very red and swollen. In both cases I was given a basic brush off. Like "oh, yeah, that happens some times."
So the day of the bruise our doc called another associate in. She took one look and said, "it's a bruise" and walked out. Then I heard them quietly talking outside the door. I know that other doc thought the worse. Child abuse. And being that I have a son 2 years older I don't even want to speculate. But our doc was great. She told us to get testing right away. I just love her!! We did this and spent the next 48 hours at 2 hospitals trying to get blood from a healthy fat baby, then waiting to be given factor, to speaking to a hemaphilia nurse about what it all means. The first hospital was the one nearest our house. Clearly not prepared for drawing blood in a fat baby arm. After 6 pokes, blood and tears from mom and baby, we headed to Seattle Childrens. A few hours later, success. Now the waiting. Then sitting in the ER, Will given a full exam. 2 hours later, we are admitted to hemo/oncology ward. This is NOT a fun place to be. We are the lucky few. This is the floor for VERY sick kids. Cancer kids. My husband's sister died here. It was a lonely and frightening night. Will didn't receive his first factr treatment until 3am. Then we were able to get a little rest. By 10 am we had confirmed with everyone the severe A hemophilia diagnosis. We spoke to a hemo nurse and our journey began. Our first thought was...how do we keep him safe? Bubble wrap??

The world of Hemophilia

About 7 months ago we entered the world of Hemophilia. Our yougest son, Will was diagnosed when he was just 4 months old. This blog was created to tell our story and to share our experiences with others. Hemophilia is a rare, inherited bleeding disorder that is passed down, most commonly, from mother (the carrier) to son. In our case it was "hidden" and Will is the first living male to have it. Since then, I have been in the process of DNA testing and have found out that I also have low clotting levels (34%) my mother has 32%. I have a younger brother who is unaffected and an uncle who is unaffected. We had no knowledge of being carriers until now. In all other ways, Will is normal and healthy. Hemophilia is just a bump in the road of our journey....