My son turned 16 this week, I am so proud of him. He has severe hemophilia and we have worked so hard at not allowing the hemophilia to run our lives. He has had a few knocks through the years, broken ankle and arm , a hit to the head, a bleed that lasted 6 weeks behind the knee, hemorrhaging Adonises, an elbow here and there, not to forget the mussel bleeds now and then.
He is walking with out a limp, 95%+ range of motion on all joints, a mended arm and no target joints.
He is getting his drivers license this week, spending weekends with friends even out of state and once in a snow cave. He rides dirt bikes, quads, snowmobiles and plays a full menue of sports. He has taken full controll of his inconvience and is powering on to be the best he can be.
What more can you ask for a well rounded kid, ready to take on the world
You new moms out there remember hemophilia is a small inconvience not a handicap
enjoy your children
Happy Birthday to my Alex
5 comments:
Sorry to bug you, but I'm new and can't figure out how to post a new blog to the forum. I have already created my blog, but I was hoping to share it here to get some responses and learn some more about life with this conditions since my son is newly diagnosed.
Brenda,
Thank you for wanting to share with us! You can either post what you would like to talk about here or send us an email. On our Blog the only ones that can start a new blog are the "hemophilia moms" that monitor this blog. We are always looking for new topics so I am so happy to hear you have one!
Lori
So we just found out that our 2 year old son, Nathanial has Hemophilia A with <1% of factor VIII. I guess that is about as severe as it gets. I'm kinda freaked out because we've never noticed any spontaneous bleeds and I'm not sure how to discover them if he has them. He is a very active and happy little boy and generally bounces back from injuries quickly. He's been prone to easy bruising that develop hard lumps under them which take weeks to go away. He has had a few small papercuts which take about an hour to stop bleeding and tend to reopen the next day when he plays, but we always have gotten these small cuts stopped. I'm a little in denial about everything. We haven't met with the doctors about this yet. I've just done research on the internet since they've told us over the phone. I am really hoping he doesn't have to have regular treatments. I don't want to make him wear knee pads, elbow pads and/or a helmet. What will life for us be like now?
Brenda,
I have 3 sons with severe hemophilia A.They are now 25 years old, 15 years old and 13 years old. They are all very active, happy and healthy! I had no family history when our oldest was born so I can understand your feelings. I do encourage you to get in touch with the Hemophilia Treatment Center (HTC) in your area. May I ask who diagnoised your son? They will be able to help you find the resources needed to continue to care for your child and learn about this condition. I am more than happy to communicate with you on a more private level if you would like? You could send a email to hemophiliamoms@aol.com and request it sent to me. One of the 6 Hemophilia Moms that monitor this site checks this email regularly.
Not sure if you have had a chance to check out www.hemophiliamoms.com but there is also information there.
I look forward to continuing our conversation. As soon as I get your email I will send you one as well!
Lori
I am a new mom of a beautiful 7 month old boy with hemophilia. His name is Alex too! He has mild hemophilia B. We knew before he was born there would be a chance my uncle has hemophilia b. My brother didn't so we were hopeing that my mom was not a carrier.... but that wasn't the case. I was pretty upset when we found out -- partly postpartum hormones but we were told by the hematologist that he should play sports. And that just broke my heart... I didn't want to shield him from life or keep him from doing stuff that boys do. So thank you for shareing your story about your son. Brings me a lot of hope and peace of mind that hemophilia doesn't have to run our son's life.
Thank you again,
Allison
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