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Mom’s Blog: Infusing Love

Infusing Love: The ABC鈥檚 of Hemophilia

August 21, 2013

My son, Jackson, will enter kindergarten this fall. Some parents are happy for this new journey and some are dreading it; either they aren鈥檛 ready for their child to grow up or their child has a chronic illness and they are fearful of the unknown. I鈥檓 a mix of all of the above. Jackson is […]

Generosity Reality Check

August 14, 2013

By Kimberly Haugstad Last month, we spent the July 4th holiday at a festival on the Mississippi River about three hours from home. We packed for the trip with factor, snacks, tissues, and a pillow in the car.聽 Our plan was to take a dinner cruise on a paddleboat and watch the fireworks from the […]

Chocolate and Vanilla: Two Brothers鈥o Different

August 7, 2013

By Cazandra Campos-MacDonald One thing I鈥檝e learned is that right when I think I’ve got hemophilia all figured out, something comes along that blows my perception and understanding right out of the water.聽 I鈥檝e learned that you never know when your experience will ring true with someone else and make them feel less alone.聽 That […]

The Fighter

July 31, 2013

By Sonji Wilkes Several summers ago, I signed the kids up for swim lessons to help keep them busy during summer break. A couple of years later, after once-a-week, year-round lessons, they had progressed to a point where I was brave enough to sign them up for a local swim team.聽 I was thrilled; they […]

As I See Him

July 24, 2013

By: Emily Boyer It has been a long day; an immeasurably long day. We spent it at the Hemophilia Treatment Center (HTC) in an attempt to rid my little one鈥檚 body of a persistent inhibitor. It was long. I am tired. My house is a mess 鈥 I do not remember the last time my […]

Up, Up, and Away!!!

July 17, 2013

By Juanita Fish When my son was 9 years old, I begrudgingly sent him to camp for the first time. It was a pivotal moment for my family! When Johnathan (Jon) was born, I became the mother of a child that would need to be raised differently than others, at least physically. Eight months later, […]

Self Reliance To the 鈥淢ax鈥

July 10, 2013

By:聽 Maryann May I’ve been thinking a lot about Max and how he gained his hemophilia independence. 聽He was 6 the first time he self-infused. 聽He did it at our chapter鈥檚 family camp with the guidance of some amazing older mentors. 聽In those days things weren’t nearly as organized as they are now; no gaggle […]

The Red, White & Blue Of Hemophilia Independence

July 3, 2013

As we celebrate America鈥檚 Independence Day, nothing says it more than the wearing of red, white and blue, a parade and a night of fireworks. Self- infusion is Independence Day for kids with bleeding disorders.聽 They wear their medical alert bracelets, they go to camps, they practice – and sometimes struggle – with veins that […]

Adding More Mommy Friends to the Playgroup

June 26, 2013

When my oldest was first born, I was part of a weekly playgroup; a group of five to seven moms that would sit around a plate of cut-up vegetables and lemonade.聽 Through a fog of sleep deprivation, we exchanged stories of introducing our babies to solid food and comparing which brand of diapers worked best.聽 […]

Mommy, I Think You Might Need RICE for That

June 19, 2013

                I am notoriously klutzy. I always have been. My father used to joke that he should have named me “Grace” because I managed to spill a drink every Sunday at dinner. When I was a kid, I would walk into walls, and growing up in the South, […]

Superhero D.A.D: Delightfully Awesome Dude

June 12, 2013

On my husband鈥檚 Twitter profile, he describes himself as 鈥淔ather, Entrepreneur, Righteous Dude, Caped Crusader Fighting the Evil Private Health Insurance Empire.鈥澛 I鈥檇 testify those all true assessments of him.聽 He鈥檚 a pretty good guy. I think most fathers in the bleeding disorders community are.聽 They fight for justice for their kids just as hard […]

Your Choice. Your Voice.

June 5, 2013

  Hemophilia Treatment Centers (HTC’s) are federally-funded facilities that offer comprehensive, multi-disciplinary services in a single setting. I likened them to one stop shopping: you have your physician, nurse, social worker, and physical therapist all on the same team with you, the patient or caregiver, as the star athlete. Today, there are 144 federally-funded treatment […]

Prior Planning Prevents Persistent Problems

May 29, 2013

A couple of years ago, we decided on a whim to take a drive to the top of Pikes Peak on Labor Day weekend.聽 Standing at 14,115 feet, it鈥檚 one of Colorado鈥檚 highest mountain peaks and in July 1893, Katherine Lee Bates wrote the song “America the Beautiful鈥 after admiring the view from the summit.聽 […]

Taking Care of Me

May 22, 2013

Denial is a funny thing. There were several signs that indicated I needed to take some action about changing my habits and improving my overall health. 聽I chose to ignore most of those signs, giving myself excuse after excuse: I just don’t have time to exercise; there was a vegetable on my plate at dinner, […]

Taking Off the Super Woman Cape

May 15, 2013

Inspirational quotes appear in lots of different places in our lives: on social media, public service announcements, classroom posters, the bulletin board in the break room at work.聽 Prior to becoming a mom, I rarely gave them a second thought 鈥 they were simply filler and not something I spent much time pondering.聽 As I […]

Infusing Love: The Best Job You鈥檒l Never Get (Monetary) Payment For

May 12, 2013

Oprah Winfrey has been quoted, 鈥淚 always say moms have the toughest job in the world.鈥澛 Everybody knows Oprah is right more often than not. What would the job description for a mom with a child of a bleeding disorder look like?聽 I think maybe it would be something along these lines: Job Title: Mama […]

Honoring All Moms, Past & Present

May 8, 2013

Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different. I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed […]

I. Am. Exhausted. (…and Doing the Best I Can)

May 1, 2013

It’s one o’clock in the morning and I just finished infusing Thomas for the seventh time in twenty-eight hours. We spent four of those hours in the emergency room for pain management and I’ve heard, “Mommy!” approximately 635 times today. 聽I. Am. Exhausted. I had to keep Thomas home from school due to a nasty […]

It’s Time for a Family Reunion

April 24, 2013

One of the things that surprised me most about joining the bleeding disorders community was the sense of family.聽 Thomas鈥檚 diagnosis was the first in our family history (although we鈥檇 later find out I鈥檓 a carrier), so the shock of hemophilia was hard to shake, but the open arms we met made it a bit […]

A World Away; But That鈥檚 Not So Far

April 17, 2013

My fellow hemo moms are like my sisters. They are the women I can call, text, or email when I need an outlet for my fears and frustrations.聽 There seems to be an instant sisterhood amongst hemo moms as soon as you connect a group of them – whether that connection takes place in person […]

Cookie Theft Leads to Laughter

April 9, 2013

Most moms of children with bleeding disorders have a sick and twisted sense of humor. Many of us use humor as a coping mechanism. Honestly, I don’t know how I could have managed all these years without many moments of聽 levity and giggles. For instance, one of the scariest potential bleeds Thomas ever had is […]

Normal is Boring

April 3, 2013

A few months ago, Thomas was just getting over a foot bleed, ironically caused from snow boots that were too tight. (I mean, really? 聽Snow boots?) After a week of not being able to do his nightly chore of taking out the kitchen trash, I declared his foot healed enough to take out the garbage. […]

Raising Awareness while Raising Children

March 31, 2013

I can鈥檛 say that I was 鈥渁ware鈥 of hemophilia before Thomas was born. Since there was no family history, the only thing I could vaguely recall about hemophilia was that Ryan White had it. My knowledge beyond that was slim to none. In the days right after the diagnosis, I didn鈥檛 want to look at […]

Proud Mom of an Alphabet Belcher

March 27, 2013

From the time Thomas was an infant, I had been told hemophilia camp was not to be missed.聽 Kids and adults alike told me how wonderful camp was for them and how it was their most anticipated week of the year.聽 There are over eighty summer or family camps for persons with bleeding disorders in […]

Affording to Bleed

March 20, 2013

I think we can all agree that factor is an expensive drug. The Explanation of Benefits (EOB’s) that arrive in the mail each month are horrifying to look at. The ones we get are on the far end of the “oh-my-goodness-that’s-a-lot-of-money” spectrum. And those are just the ones that include Thomas’s factor supply for scheduled […]

Siblings: Unaffected, but certainly AFFECTED

March 13, 2013

  As a mom, the single hardest thing for me about hemophilia hasn’t been the unpredictability, or the pain, or the insurance, or the infusions. 聽The thing I struggle with and lose the most sleep over are my “unaffected” girls. I’ve got this hemophilia thing down – recognize the bleed, treat it. Rinse, repeat. 聽But […]

That Almost Never Happens

March 6, 2013

                At the very first meeting we had at the Hemophilia Treatment Center (HTC) when Thomas was a week old, Nathan asked the HTC team, “Does the medicine ever stop working? Can you build up antibodies to it?” Not wanting to worry us and having a good track […]

The Truth About Advocacy

February 27, 2013

              Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.聽 Advocacy sounded like downright torture and I didn鈥檛 want any part of it. A perspective change came in the […]

Earning My Mommy Medical Degree

February 25, 2013

                  Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly […]

Welcome to Infusing Love: A Mom’s View

February 19, 2013

                Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom!聽In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly crazed) […]


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