Thursday, November 6, 2014

Bleeds, Bleeders and Beards...oh my!

Have you noticed how hairy it's become lately?! I know I have!! Especially in my house. A few months back...actually, September 1st my mildly hairy husband shaved it all off. He was as smooth as a baby's butt. 

Look at that baby smoothness! 
So, what's the big deal? Well...fellow Hemo friend and Dad, John Bruno, came up with a plan...a movement if you will...
And thanks to fellow Hemo brother, Jay D. Bishop for the awesome design!!

It's all rather hairy if you ask me!! But what better way to raise awareness for Hemophilia OR any bleeding disorder than growing a beard. I know my hubby has been getting a lot of attention with his Grizzly Adams look. To which he happily replies "I'm growing my beard to raise awareness for my son's bleeding disorder, hemophilia". Oh...did I mention they are growing their beards for six months? Just in time for Hemophilia Awareness Month! You can check out the website HERE. The goal is not only to raise awareness but to raise funds for your bleeding disorder charity of choice. We are choosing our local chapter, the TriState Bleeding Disorder Foundation. Our local chapter has been wonderful not only to us but to all the families and individuals in our area. We would love to give back to them as much as they give to us through Educational Days and conferences, outreach events, hemophilia camp and support groups. If you feel so inclined we would love for you to sponsor Joe's beard!! While I'm setting up a fundraising page you can send your tax deductible donation to Just let them know you are supporting the bleeding community AND some hairy bearded dude named Joe. 
Here's Captain Jackson growing his beard. 

Joe's 9 week picture!! Can you say Grizzly?! 

Monday, October 20, 2014

Hemophilia sure is a pain...

I mean, really. It is. A pain.

It was a Sunday night, our middle daughter, Nora, is an 8th grader. It's her last year at this school and her last basketball home game. We started celebrating as a team at a local pizza place, watched a video of the girls through the years and headed over to the school gym for their last home game. We had huge photos of the girls on the gym wall with their jersey number hanging below. I had invited my whole family for this fun night.

Jackson was killing some time before the game started and he was in Ninja mode. He was having a great time. Working out some energy. Being a boy. It wasn't until we took our seats about 10 minutes before the festivities were to begin that he looked at me and said, "Mom, my arm hurts." I sighed, a little. Thinking that we didn't have time for a bleed. As if we ever have time for a bleed, right? Wouldn't it be nice to say hmm...we have nothing planned on Sunday at let's say noon...shall we pencil in a bleed? That would be something. Anyway, I take a look at his arm and by looking at it I know he has a bleed. I find my hubby and let him know Jackson has a bleed. He immediately goes into the "if you wouldn't have been horsing around" to which I immediately hush him. It's done. He had fun. He has a bleed. It's not bad. He's a boy. I don't want him overly timid because he is afraid he will have a bleed. That's what factor is for. Let him be a kid.

My Ninja Jackson

Too late. Jackson had heard some of it and got MAD. All the while knowing that at any minute we had to set up a little walk way and get announced with our daughter for 8th grade night. Joe wants to immediately leave but I told him to hold on. We HAD to walk our daughter down the walk way. (Side note:
the bleed was on his arm...he had full range of motion, no discoloration, minimal swelling...hemophilia was gonna have to wait 5 minutes.)

We ran down to the court, organized a make shift walk way, walked our daughter down the basketball court, got a photo and Joe bee lined it to the bleachers, picked up Jackson and went home to factor up.
The whole time I'm pissed that hemophilia got in the way. That Jackson had to leave the game early because he had a stupid bleed.

The game was over. We went home and Jackson was factored up and  RICE'd. He was with his daddy and watching what he wanted to watch. He was fine and that bleed was sooo 60 minutes ago. Just goes to show how unpredictable hemophilia is and how it likes to mess your plans up no matter how important they might be.

Tuesday, July 29, 2014

Surviving the first lost tooth!

I've been bad about blogging lately. It's all good. Busy living life! However, this summer we can check off a milestone for Jackson. It's the same milestone that I've worried about as a Hemo Mom...the dreaded lost tooth. I've known it was coming. His dentist kept telling me for the past year that he has a wiggly tooth at every cleaning we went to. But I still worried.

How would he lose it?

Would it be the kind that hangs on for dear life?

Would it be wiggly for months?

Would it bleed?

So I get a call while at work. My kids know not to call me unless someone is dead, dying, bleeding or broken. Texting is fine for other things but calls are left for the serious issues. I answer my phone and it's Jackson on his sister's phone. "Mommy? I lost my tooth!!! I can't find it!"

I calmly reply "congratulations!! And what do mean you can't find it? Put your sister on the phone."

His sister then tells me they were looking at themselves in the mirror. Being all silly and practicing various smiles when she notices he has an open space between his teeth. The good thing: he lost it and didn't even know it AND he didn't bleed one drop, not even a speck. Not that it would've been a big deal as we would have administered Amicar and factored up. But that he was able to have a non-bloody lose tooth event was great! I realize that they won't all be this way. But I'll be happy with this little victory!

The photo his sister took and text me just after losing his tooth!

Since we never did recover the tooth we wrote a letter to the Tooth Fairy to let her know!