"I'm sorry." "What if they get a scratch?" "Will they bleed to death?"
"Are they going to grow out of it?" "How do you handle it?" "You mean you give them shots in their chest at home? Four days a week?"
Meet Elias and Emmett. They both have hemophilia--severe and Type A. In other words, they are missing a important protein in their blood that helps give the "stickiness" when forming a clot when a blood vessel is broken. They do not bleed harder, but longer.
Please do not be sorry for our boys. With all the advances in medicine and technology over the past 30 years, they will live long and healthy lives as long as they keep up with being smart and healthy. No, they will not bleed to death with a small scratch, cut, or scrape. The scariest thing for these guys is internal bleeding. Bleeding into their joints is common and can be very destructive in the long run. And yes, if they bleed onto their brain or vital internal organs it can be life-threatening. And no, they will not grow out of it. At this point we pray for a cure. Overall, we all handle it pretty well. We try to keep the boy's lives pretty normal by letting them do pretty much anything, but they know that they have to get their factor, yes--four times a week. It adds a little more chaos to our morning ritual on those days. Check out our set up. Elias was glad to demonstrate how we rock the factor train….
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| Sterile field ready to go. First kid to go picks the cartoon! |
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| Clean it up |
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| Factor Up |
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| Push in the caboose (heparin lock)! |
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| KEEP CALM and FACTOR UP! |
1 comment:
Can I just say that from an outsiders view you and your family lead an amazing life and I love that you just live life to its fullest
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