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  • Insist Your Child Wear a Medical Alert ID. No Excuses!
    responders could have saved his life This reinforced the rule in my house wearing a MedicAlert ID is a non negotiable must for my child As parents you can t always be there to protect your child MedicAlert IDs can We pick our battles with our children and our little bleeders are no exception At 3 years old Rose begged to wear her fancy outfit to Thanksgiving dinner and the years long tradition of wearing her dinosaur costume to turkey dinner began And even though MedicAlert IDs were a must wear Rose could choose a bracelet or necklace version Of note bracelets sometimes get caught on things for the very active child and MedicAlert necklaces can be tucked into one s shirt which also makes it less visible if that kind of thing bothers you or your child And next time you re stumped for a present remember MedicAlert IDs make great gifts for your favorite bleeder They come in a variety of colors and degrees of chic Rose has her favorite and everyday stainless steel bracelet which is apparently fun to play with while studying for exams She also has her snazzy silver and gold MedicAlert IDs which her grandmother loved to bestow on her for milestones like Sweet 16 or Senior Prom Younger kids can get cool ones too MedicAlert IDs come in the brightest assorted colors and fun active styles Things have changed in the past 18 years since Rose was diagnosed The standard MedicAlert ID has evolved into a full medical jewelry line even ones with beads and others with easy flex sport silicone bands But certain things stay the same Rose still wears her fancy outfit a now grown up version of the dinosaur costume on Thanksgiving complete with MedicAlert ID for the ultimate hemosaurus

    Original URL path: http://www.hemaware.org/print/1456 (2016-02-18)
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  • Parenting Pointers | HemAware
    had only known the post pregnancy pounds were the least of my worries My whole world was turned upside down when I was told that Rose at the tender age of 9 months may not make it through the night Fresh frozen plasma cryoprecipitate and whole blood were needed to save my baby s life Hemophilia was making its grand entrance into our lives It was a whirlwind of doctors and incorrect diagnoses before we got the correct diagnosis Rose had severe hemophilia A 1 factor No family history How did this happen to us There was little time for self pity although somehow I managed to squeeze it in collapsing in my own heap of tears from time to time and the race was on to learn as much as possible and get the support and care Rose and we as a family read more If In Doubt Infuse It was Nana s 75th birthday party and it was a big deal Rose had just turned 2 and she was making her debut in the extended family as the first born great grandchild It was a bit of a trek to the catering hall in Queens from our home on Long Island We packed toys games wipes and other toddler necessities But we didn t pack the factor I rationalized that it was safe and I could keep an eye on Rose that she wouldn t get hurt and we d pretend hemophilia didn t exist just for the duration of Nana s party Hemophilia had other plans Nana s party was complete with a DJ and an inviting dance floor Rose had played all the games we packed tried all the new foods and she was ready to dance And it was so much fun Rose danced and

    Original URL path: http://www.hemaware.org/blogs/parenting-pointers (2016-02-18)
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  • Parenting Pointers | HemAware
    had only known the post pregnancy pounds were the least of my worries My whole world was turned upside down when I was told that Rose at the tender age of 9 months may not make it through the night Fresh frozen plasma cryoprecipitate and whole blood were needed to save my baby s life Hemophilia was making its grand entrance into our lives It was a whirlwind of doctors and incorrect diagnoses before we got the correct diagnosis Rose had severe hemophilia A 1 factor No family history How did this happen to us There was little time for self pity although somehow I managed to squeeze it in collapsing in my own heap of tears from time to time and the race was on to learn as much as possible and get the support and care Rose and we as a family read more If In Doubt Infuse It was Nana s 75th birthday party and it was a big deal Rose had just turned 2 and she was making her debut in the extended family as the first born great grandchild It was a bit of a trek to the catering hall in Queens from our home on Long Island We packed toys games wipes and other toddler necessities But we didn t pack the factor I rationalized that it was safe and I could keep an eye on Rose that she wouldn t get hurt and we d pretend hemophilia didn t exist just for the duration of Nana s party Hemophilia had other plans Nana s party was complete with a DJ and an inviting dance floor Rose had played all the games we packed tried all the new foods and she was ready to dance And it was so much fun Rose danced and

    Original URL path: http://www.hemaware.org/blogs/parenting-pointers/this.href%29;%20return%20false (2016-02-18)
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  • Send page by email | HemAware
    Wellness Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family Hemaware Jr Women Women s Bleeding Disorders Carriers Watchdog Insurance Blood Safety Advocacy Community HemAware Blogs HemAware Videos HemAware Photos Chapters in Action Global Spotlight Community Voices En Español Need info Ask NHF Contact HANDI NHF s resource center for additional information on bleeding disorders Home Glossary Site Map Donate Advertise Privacy Policy Subscribe Contact Us Life Stages Infants

    Original URL path: http://www.hemaware.org/printmail/1455 (2016-02-18)
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  • Talk Early, Honestly and Often
    this happen to us There was little time for self pity although somehow I managed to squeeze it in collapsing in my own heap of tears from time to time and the race was on to learn as much as possible and get the support and care Rose and we as a family needed ABCs and factors 1 2 3 Infusions became a frequent event Rose would bump her head have a knee bleed or a playground mishap and we would have to hold her down while a nurse often struggled to do the infusion It s hard to have a conversation about hemophilia with your screaming baby but we blew bubbles to distract her and told her everything would be ok How to create positive associations with seemingly all negative and painful infusions I spoke to Rose in a comforting voice telling her that the infusion would help her bleeding and keep her healthy When she started preschool we talked more about hemophilia and even learned how to spell it You wouldn t believe how many people cannot spell hemophilia Include your child in filling out the hemophilia log let him her draw pictures or make up names for new veins and even names for bruises my favorite Bruce the Bruise As he or she gets older let your child choose if they feel comfortable sharing their disorder with their class as hemophilia is often included in science curriculums even in elementary school Participating with your child in your local Hemophilia Walk from baby stroller to high school senior is a great way to start the conversation about bleeding disorders The more often you talk about hemophilia and integrate it into your life the more comfortable your child will feel Even Bruce the Bruise would agree with that Be

    Original URL path: http://www.hemaware.org/print/1455 (2016-02-18)
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  • Send page by email | HemAware
    Wellness Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family Hemaware Jr Women Women s Bleeding Disorders Carriers Watchdog Insurance Blood Safety Advocacy Community HemAware Blogs HemAware Videos HemAware Photos Chapters in Action Global Spotlight Community Voices En Español Need info Ask NHF Contact HANDI NHF s resource center for additional information on bleeding disorders Home Glossary Site Map Donate Advertise Privacy Policy Subscribe Contact Us Life Stages Infants

    Original URL path: http://www.hemaware.org/printmail/1453 (2016-02-18)
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  • If In Doubt, Infuse
    and we were all having a blast until in supreme toddler fashion boom Rose slipped and hit her head on the unforgiving wooden dance floor A wave of panic swept through me How could we leave Nana s party We whisked Rose away trying to slip away unnoticed We called my in laws who met us at the local hospital with factor to infuse Rose So Dance Floor meets Toddler s Head is an obvious Infuse Moment What about for those less obvious times those Should we infuse for this moments These moments often come right before the bus is coming or at midnight or at any other time in the day where you just don t have the time or energy to infuse I cannot emphasize this enough If you are asking yourself whether to infuse your child for an injury or even for a feeling do it If in doubt infuse Infuse when your child comes home from a concert and has a forearm bleed from excessive clapping infuse when a spirited game of foozball has triggered an elbow bleed and infuse for that off feeling in your child s hip where if left untreated it could turn into a full fledged and debilitating hip bleed Even if your child is on prophylaxis he or she can have breakthrough bleeds so it is important not to brush off any symptoms of a bleed As Rose got older we infused smarter Even on prophylaxis we would change the days to protect her when her activity level was higher Some not so obvious times to infuse before a sleepover before a major holiday and even yes a birthday infusion And always bring factor and supplies if you are heading more than an hour away from home With a proactive approach

    Original URL path: http://www.hemaware.org/print/1453 (2016-02-18)
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  • Bullies, Be Gone! | HemAware
    go their way Lots of times they blame everyone else for their problems Sometimes they don t have happy homes Many bullies have been bullied at home Why me Bullies pick on people who they think are smaller or weaker not popular and don t have a lot of friends quiet and won t report it different A bully may pick on you if you are smarter than he or she is Or if you wear glasses speak another language or have a bleeding disorder A bully will use anything that makes you different to tease you and put you down What to do Most schools have rules to protect kids from bullies Nobody wants to be a tattletale but a bully can hurt you especially if you have a bleeding disorder Being hit could cause a bruise or a bleed If you have to face a bully Use words Tell the bully to stop but don t show anger or fear Act brave Stand tall with your head up and walk away to show you re not weak Find friends Keep them with you in the hall or cafeteria on the bus or on your walk to and from school Don t fight back Stay calm so things don t get worse Tell an adult Reporting a bully will help stop him from hurting you and other kids too Standing up for yourself in the right way can help you to say Bullies be gone View the discussion thread Life Stages Infants Children Teens Young Adults Adults Aging Research Treatment Hemophilia A B von Willebrand Disease Rare Bleeding Disorders HIV Hepatitis C Surgery Transplants Researcher Profiles Health Wellness Fitness Nutrition Taking Charge Pain Management Parenting Family Parenting Family Hemaware Jr Women Women s Bleeding Disorders Carriers Watchdog Insurance Blood

    Original URL path: http://www.hemaware.org/story/bullies-be-gone (2016-02-18)
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