Hemophilia

It's been about a year since our lives changed big time. It all started on April Fool's Day (I remember wishing so bad that it was some weird April fool's joke), that day I took Ezra to the doctor's office and finally the doctor was able to see the bruising that I was so worried about. All it took was one second look after I told the doctor that Ezra was ALWAYS bruised for Dr. Heron to send me straight to the lab to get Ez's blood drawn. In the lab it took multiple attempts before the techs were able to draw the blood that they needed for the tests that were ordered. That afternoon Dr. Heron called to tell us that he was sure Ezra has a bleeding disorder but he didn't know which one yet. Poor Ezra got so bruised from the multiple attempts at drawing his blood that he pretty much cried all weekend.

It took one more blood draw before we got the news that Ezra had severe hemophilia b. I was devastated. I really had no idea what that meant for him but no parent wants their child to have something severely wrong with him. Don't get me wrong... I know it could be worse... so much worse but I wanted normal.

I look at that experience compared to Evan's diagnosis. We collected Evan's cord blood for testing... so he didn't have to endure the trouble that comes along with trying to draw blood on a tiny little thing. There was no worrying about what was wrong with our baby and treating Ezra's hemophilia has turned out to be a manageable change to our life.

I don't think I ever mentioned it before but there was so much tension in our house about Ezra's crazy bruising. We could see Ian's fingertip marks from where he held Ezra when he held him with one hand. I can remember yelling at him multiple times about it because it was bruising Ezra. I am sure Ian questioned what I was doing at home all day with the kids when he comes home and Ezra's chest was covered with ugly bumpy bruises from crawling over Eve's Barbie furniture. It felt like we were totally clueless. We had treated Eve the same as a baby and none of this had happened to her. I know I was constantly second guessing myself, wondering what I was doing wrong. Now I know we weren't doing anything wrong... we were loving Ezra and he was getting bruises. Now I know bruising like that isn't normal but it's okay. I would rather have bruises the shapes of Ian's fingertips on my kid than Ian not play with our kid. With Ezra on prophy we don't have to worry about the bruising; but I know once Evan gets moving we will have to deal with the ugly bruising again. Now it will just be strangers second guessing our ability to properly parent... not us.

Even though I know it will be okay it isn't like I welcomed Evan's diagnosis. This time instead of spending a month crying about it I took a day. I know it isn't the end of the world... but I really didn't want to do it again. When Barb from the blood center called that lovely day and told me that Evan has severe hemophilia B just like Ezra there was one scene that flashed through my mind and that is why it makes me sad. All I could think is that we would have to replay that horrible day in the ER when Ezra screamed and screamed and screamed for hours on end, one of us literally laying on top of him and the other stabilizing whichever extremity they were attempting to poke. And the nurses would poke and poke and poke trying to get a successful IV. Until after 7 hours and somewhere around 12 pokes the poor guy fell asleep completely defeated, I mean ALL of the fight out him. I so do not look forward to going through that again. Maybe we won't, maybe Evan will have awesome veins. If not I think it is pretty impressive that Ezra was/is such a fighter. I think I would have given up the fight long before he did. So if we have to go there again at least I can be comforted to know that we are raising boys with a nice fighting spirit... and there is nothing wrong with that.