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insurance_challenge_Moms Blog

Infusing Love: Too Long to Wait

Our insurance provider changed at the beginning of this year.* We knew there would likely be some new hoops and apprehensively were preparing in the months prior to January 1st.  Thinking I was a savvy bleeding disorders mom getting ahead of a game, I knew this may require some extra work. So first thing on […]

Emily_Ryan_MomsBlog

Infusing Love: The Costs of Bleeding Disorders

We’ve all read those statistics that discuss the cost of raising a child. Most I’ve seen report the costs in the $250,000 range. Kids are expensive. Just recently, at Target, our cart contained a variety of things that were not on my list and, of course, I had to actively tell my 4-year-old that he […]

rare_disease_kids

HFA Observes February 29 As Rare Disease Day

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

jackson_hemophilia mom

Infusing Love: Second Guessing

I deal with mommy guilt every time Jackson has a bleed. When my son is having a bleed, he tells me before there is any visible signs off swelling. I never doubt when he tells me…he knows his body. Two weeks ago, we got a dreaded call from the school health aide letting us know […]

lovee_mark_basketball

Infusing Love: For the Love of Basketball

It is important for individuals with a bleeding disorder to find a form of physical activity that they enjoy. When muscles are used during exercise it helps to keep them flexible and strong.  Physical activity also helps individuals to maintain a healthy weight, which keeps less stress off the joints, and has even proven to […]

Cazandra_MomsBlog

Infusing Love: A Letter to Hemophilia

Dear Hemophilia, There was a time when you devastated me. You destroyed my little boy’s knee and ankle, causing tremendous pain and forcing him to undergo several port surgeries. He missed weeks of school. Oh, and let’s not forget the wheelchair you put him in for over a year. That was torture, taking away his […]

max_knees

Infusing Love: Normal is as Normal Does

Sometimes, as I wander around whatever hospital we’re in, I wonder what the difference in normal is between us and them: those living with a chronic condition and the people that do not. As they were wheeling Max into the operating room for yet another surgery, I wondered when this became our normal. Max and […]

Cathy_Chris_momsblog

Infusing Love: Summiting Mount Worry

I was recently talking with someone about Chris’s Seven Summit Quest, and the woman I was talking to said something that I didn’t understand. She said she was glad we raised Chris to not be a victim of his hemophilia. I asked her what she meant by that. She said so often people use medical […]

thomas_bruises_momsblog

Infusing Love: Timeline of a January Bleed

Thomas has had his inhibitor for more than a decade, causing bleeds to be an unfortunate, but relatively routine, occurrence. We’re used to holiday bleeds, birthday bleeds, and random “where did that come from” bleeds. Be it crass or an obvious statement, bleeding happens, and we push forward. Through these tough times, we try to […]

Wendy family_2

Infusing Love: Realistic Expectations

There is nothing I love more than sitting around the Christmas tree with friends and family, sipping hot cocoa, singing holiday carols, and wearing a warm knit sweater with a reindeer on it. Ok, I admit it. I have never done any of those things, at least not all at the same time. I stole […]

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