Why Hemophilia Makes me a Better Parent

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When my newborn baby was put into the Neonatal Intensive Care Unit (NICU) for a week, I was hit by a powerful force of immense strength and love I didn’t know I had.   My husband and I already were blessed with our firstborn son who did not have any health concerns.  While we love both of our children very much, it wasn’t until our second son was diagnosed with severe hemophilia that we really learned what being a parent meant. My husband, Alex, recalls that moment over a year ago and says, “After seeing Christian stuck with tons of needles while he was in NICU, I felt helpless that I couldn’t rescue him.” At that moment I felt the depth of a parent’s love.” Christian didn’t stop bleeding for days after circumcision and during those dark days of suffering and confusion, we came together as a team of hope for him.  My husband and I, despite being sleep deprived and scared for our son’s well-being, had to lean on each other and became a more unified family. We are better parents today Continue Reading

Caring for my “Bleeder”

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Dear Caregivers: Thank you very much for keeping a mindful watch on my baby yet allowing him (and myself) to socialize in "normal" settings.   Christian does attend the gym and church nursery regularly so I wanted to explain briefly what his bleeding disorder is all about.  Since my 20 month old "bleeder" is not entering into school, my intention is to keep this information brief and "to the point." Christian has severe hemophilia A, which is a chronic condition that does not "go away." What is severe hemophilia A? Hemophilia A is a deficiency in Factor VIII, which is a missing protein in the blood.  This inhibits the body's ability to clot properly. Below are some illustrations of Christian's response to a bleed vs. someone without a bleeding disorder. Click on picture for link to sites. Severity Hemophilia A Range Normal factor levels 50% – 150% Mild hemophilia 5% – 49% Moderate hemophilia 1%-5% **Severe Continue Reading

Mommy-dentity revealed . . .

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Last week I blogged about my "mommy-dentity crisis" and upon pondering that writing I had to follow up with some revelations I feel God has put on my heart.  You see, before I became a mom I based my sole worth and value on my career. I was very successful at fundraising as a Director of Development and I loved the field I worked very hard to get into.  After soul-searching I was certain that "this" (my career in nonprofits) was my sole purpose and mission in life. Then I had kids and all of that changed. My sole purpose and mission is not in my day job or even my new "job" as a stay-at-home-mom:  my purpose and mission is to receive God's love and AMAZING grace and pass that onto those around me.  You see God has been trying to teach me that I am worth so much more than my position at work: whether that is a Director of a nonprofit or Director of my home/children. God has been telling me over and over again and I am just now listening.  This is what He is saying. Samantha, Continue Reading

Uniquely Made, Uniquely Blessed

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This is what the idea of "Blessed Blood" is all about.  Our sons and daughters, and ourselves for that matter, are uniquely made and uniquely blessed.  We were all made differently for a purpose to fit into the Body of Christ in our own ways. Ours sons with hemophilia are not cursed with "bad blood" but instead are blessed.  How are they blessed? They are blessed to be alive.  They are gifts to this world.  Our sons are teachers, teaching us their strength and perseverance to live life to the fullest and conquering many struggles and obstacles that they were told would be a roadblock in their life.  I hear of so many inspiring stories of hemophiliac men like Vaughn Ripley and Barry Haarde.  http://www.vaughnripley.com/ These men have dodged any death sentence of HIV, Hepatitis C and hemophilia.  They not only overcome these conditions-they actually conquer them everyday on a road bike and staying healthy and strong.  These moms must be proud.  We should be proud of our sons. And our Continue Reading

Shemo: “it’s not what I want, it’s what WE NEED”

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I am a mild hemophiliac.  I have severe joint damage as confirmed by an orthopedic doctor a couple of weeks ago, who has worked with hemophilia for over 25 years.  I am denied treatment for my bleeding disorder by the Hemophiliac Treatment Center because my Factor 8 levels are deemed too high at 22. I was told today by my (no longer) hematologist that "it is not possible based on my levels that I am experiencing any bleeds" and "any patients at that level will not be treated with Factor and can not experience any spontaneous bleeds."  In fact, I was told the only way to prove I was experiencing a bleed was to stick my joint with a needle and see if there is blood in it. Meanwhile, with much push back and struggles from my (former) HTC and for weeks awaiting this call back I finally received today, I switched to another HTC. At my new HTC I received my first dose of Factor one week ago exactly.  Within 20 minutes of receiving Factor I felt less pain and more mobility in my knee Continue Reading

I am a female hemophiliac not a “lyonized carrier”

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I am a hemophiliac.  Period. It took me some time and thankfully some encouragement from other female bleeders to stop calling myself a "symptomatic carrier."   A particular HTC I have visited (those of you who know me, know which HTC I am referring to) has labeled me as a "lyonized carrier," according to my ER letter I received.  You see although I would not have understood the difference and the connotation of these two terms "symptomatic carrier" and "mild hemophiliac" a couple of months ago, but I do now.   Now I understand there is a grave difference between the two terms, especially in describing one's condition. There is a long history of women bleeders who, when labeled as a "symptomatic carrier," are not taken seriously.  In fact, many women still today are not getting treatment of Factor when needed.  And when is Factor needed for a female bleeder?  This not only depends on her Factor levels but her bleeding symptoms.  It is not only deemed necessary to treat a woman Continue Reading

Hemophilia Walk tomorrow!

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Last year was our first Hemophilia Walk and my baby hemophiliac wasn't even one years old yet! I had a huge outcome of support from my dearest family and friends. It felt great to not feel alone. We even won 3rd place as the top 3 teams in fundraising.  I was on the Walk Committee and also managed to get other team captains and teams together who weren't in the hemophilia community at all. It was a great gathering and I am anxious to see our local community rally together again tomorrow. Tomorrow will be our second Hemophilia walk and this time I will be trying to rally some interest from our hemophilia families to get involved with some new programming the Lone Star Chapter will be offering this year.  New Family programs include: dads, moms and children.   So if you are there tomorrow be sure to fill out an interest survey for these programs at the registration table. Thanks for your support.  Let's walk together one step at a time! See you tomorrow at Mc Continue Reading

International Plasma Awareness Week

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In Honor of International Plasma Awareness Week I wanted to encourage you to share with your friends how the plasma donation process works and if close family can donate....this can help the bleeding disorder community as a whole! Some of family, at first diagnosis, used to ask me if donating blood anywhere will help my son.  A blood donation to a blood bank doesn't directly help him, but the sure way to contribute to my son's plasma products is donating at a plasma donation site. Here is a great video that shows the process,  CLICK HERE. Click HERE  to find a plasma donation site near you. HFA is recognizing International Plasma Awareness Week by posting on their site cool iconigraphics, facts and info. For example, today is Day #4 of International Plasma Awareness Week.  Below is what you see featured today on HFA's site. Thursday, October 16, 2014 Fact #4: Thousands of people donate plasma safely every day. Plasma donation is performed by trained staff in highly Continue Reading

Needles make me happy

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This morning my husband and I had our first training at our HTC to learn to infuse.  My husband was very shocked when our HTC nurse had the needles out and got us prepped to just get right to sticking.  My husband does get freaked out by needles but thankfully he has the largest veins ever.  So he got poked first by me and I hit his vein correctly on the first try!  Yippee! Now I know on my almost 2 year old will be much harder but hey it's a start and nothing wrong with some positive encouragement of our baby steps along the way. Next my husband (although at first he resisted) stuck me.  He missed the vein the first time but got it the second time.  This was a very cool and empowering feeling! Although this is just the beginning, actually sticking each other with needles gave me a sense of control and confidence that we can manage this condition for myself and my son. I never thought a needle poke could bring me happiness but it certainly does now! More and more, the Continue Reading

Yes, my hemophilia matters too

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This is a new mantra I am repeating to myself now that I have learned of my diagnosis a month ago.  I have a bleeding disorder too. Before switching HTC's I was told by my nurse that it is very rare for me to be symptomatic.  At the time my son was a newborn and all I could mentally digest was his hemophilia.  My 2nd son (now almost 2 years old) has severe hemophilia A.  I still am learning and equipping myself to prepare for any of his future bleeds.  However, meanwhile, I have confirmation that I, too, have a serious bleeding disorder.  My factor 8 level is well below 50 and my vWD is below normal levels as well. So this means I have mild hemophilia.  Yes my hemophilia diagnosis isn't "severe" but that doesn't make my bleeding disorder any less significant.  This is something I have had a hard time to accept.  That, yes, my hemophilia matters too. Thankfully other women "bleeders" in the community have slapped my hand and given me a little wake up call.  They have reminded Continue Reading