tag:blogger.com,1999:blog-79868734224749403332024-03-20T16:24:12.243-05:00Hemophilia MomI'm starting this blog to talk about my son Trenton and his hemophilia. I hope to talk about our experiences and help other moms.Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-7986873422474940333.post-60448809110245706312013-03-02T15:46:00.000-06:002013-03-02T15:47:06.479-06:00Advocacy Goals 2013<span lang=""></span><br />
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Advocacy Goals 2013</div>
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<span style="font-size: small;"> As we look to the new year, our political leaders are faced with many challenges. In 2012, we had many states playing the "waiting game". Missouri and Kansas fall into this category and didn't do much in 2012 due to the election. My least favorite phrase to hear on both sides of the aisle was, "After the election we will . . . ". This brings us to "After the Election". Whether you are Republican, Democrat, or straight down the middle, we should share some of the same common goals. Here are my top Advocacy New Year Resolutions:<br />
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1. Find out who my new elected officials are in 2013.<br />
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Whether you have an incumbent or someone new in office in your district, you should know who they are, how to contact them and if they are local, when there office hours are in your home town. Here is a helpful website: </span><a href="http://www.usa.gov/Contact/Elected.shtml"><u><span style="color: blue; font-size: small;"><span style="color: blue; font-size: small;"><span lang="">http://www.usa.gov/Contact/Elected.shtml</span></span></span></u><span style="color: blue; font-size: small;"><span style="color: blue; font-size: small;"></span></span></a><br />
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<span style="font-size: small;">2. Attend your state advocacy day. Missouri and Kansas will both hold advocacy days this year. If you haven't been before, this should be the year you try to attend with your family! Check the MHA website for details for this fast approaching event!<br />
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3. Write a letter! <br />
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Take the time to sit down and write a letter to at least one of your elected officials. If you are not ready to share your story, send them a card to just say hello, wish them a happy birthday or send your families holiday card. The more personal connections you make, the better off you will be down the road.<br />
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4. Attend at least one new MHA event this year. <br />
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We offer so many different educational and fun activities throughout the year. This year, we will be offering events in Wichita, Kansas City, Columbia and Springfield. It is amazing how many connections you can make at an educational event. The more educated you are, the better advocate you can be for your family.<br />
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5. Share your story. <br />
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I will be collecting stories to take to our two state capitols. Take time out this month to write to your story and send it to me. You will be amazed at how your personal story can help change bleeding disorder legislation for the better. If you need help, please feel free to e-mail me or call me and I will help you through the writing process. <br />
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6. Take a close look at your family's insurance plan. <br />
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Many things have changed or are changing with your insurance. Do you know what those changes are for your family? Who is "In-Network"? Make yourself an insurance expert and look over your plan with a fine tooth comb. If you have questions, your Human Resources department or the insurance company should be able to help.<br />
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7. Take action if there is a problem.<br />
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When you have a problem, take action. Sometimes, it helps to share your problems with MHA so that we can see if the same problem is happening with other families. As Health Care Reform is implemented, we want to make sure that our community is taken care of and that nobody falls through the cracks. If you, or your family, ever have a problem, whether it is with your insurance company or your pharmacy, please look to MHA or NHF for help. Use us a resource. We are here to help you! <br />
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8. Serve on the advocacy committee.<br />
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If you are passionate about advocacy or government affairs, please contact me. We are currently forming a committee. Kristin Marema e-mail: mucarleton@hotmail.com <br />
</span><span style="font-family: Calibri;"><span lang="EN"></span></span>Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com6tag:blogger.com,1999:blog-7986873422474940333.post-10419998516822940982012-02-15T11:09:00.000-06:002012-02-15T11:09:08.175-06:00Bleeding Disorders Day In Missouri<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0j287W0XahQlWb7YDWJ5odkbMhVgw9tUQM0Gt1mwMQYyvQP-LA9gnt0HjZ6F4qcClYK1Z4XLs6o77zf_NBpXE56PoY9JPU0-lvcXITM7vOPB4e7HFZvaJHF6Kl9-fqy7DQ3ORDfOa3rw/s1600/group+in+Jay's+Office.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0j287W0XahQlWb7YDWJ5odkbMhVgw9tUQM0Gt1mwMQYyvQP-LA9gnt0HjZ6F4qcClYK1Z4XLs6o77zf_NBpXE56PoY9JPU0-lvcXITM7vOPB4e7HFZvaJHF6Kl9-fqy7DQ3ORDfOa3rw/s320/group+in+Jay's+Office.jpg" width="320" yda="true" /></a></div>
The Midwest Hemophilia Association has announced that Bleeding Disorders Day in Missouri will be March 21st in Jefferson City, MO. This is a great opportunity to share your story with your elected officials and be an advocate for our community. Lunch will be provided by the association. If you need travel assistance (your mileage paid for), please contact me personally and we will help! <br />
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Please look for our event page on Face Book!<br />
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<a href="http://www.midwesthemophilia.org/">http://www.midwesthemophilia.org/</a>Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com3tag:blogger.com,1999:blog-7986873422474940333.post-82495376730315306712011-11-13T22:08:00.001-06:002011-11-13T22:23:56.507-06:00NHF Conference Summary To FollowI apologize I don't have all of my meeting summaries posted yet. On Saturday evening, right before the final night event at NHF, we learned that my in-laws house had caught fire. We were devastated. (as were they) Trenton had been staying with them while we attended the conference in Chicago. My husband and I feel very blessed that they were not home at the time and that nobody was injured. We didn't arrive back in town until after dark this evening and have not been over to their house. My in-laws will be living with us for a while. They will need a new roof, carpet and many other things. The fire department in Columbia did an amazing job of taking pictures off the walls and saving furniture. They did loose many "things". They are just things and we are very happy, once again, that nobody was injured. Tonight I helped my mother-in-law squeeze things into our kitchen that they had dug out from their house this afternoon. They went to bed early and I am hoping they will get some much needed sleep this evening.<br />
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I will try my best over the next week to post summaries of all of the sessions that I attended. This was by far the best NHF Conference that I have attended. I hope sharing all of the information will motivate everybody as much as it is motivating me!<br />
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Please say a prayer for my in-laws tonight!<br />
<br />Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com2tag:blogger.com,1999:blog-7986873422474940333.post-64199632316931462472011-10-26T14:27:00.005-05:002011-10-26T20:03:01.551-05:00Rough TimeThe last few weeks (almost 6 weeks to be exact) I have had company at my house. I complained to any and everybody that would listen to me. During this period I also had many things going on in my work and personal life. I threw numerous <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">pity</span> parties for myself. (. . and probably consumed one too many glasses of wine! :) <br /><br />This weekend I got over it all. Yes, the company left and that helped me "get over it" much faster. I was also reading post on the <span id="SPELLING_ERROR_1" class="blsp-spelling-error">FB</span> page "<span id="SPELLING_ERROR_2" class="blsp-spelling-error">Hemo</span> Friends" that I check daily. Some of the things that these families go through on a daily basis made me sit back and think how <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">truly</span> blessed we are. It also made me think about how I could turn my negative attitude into <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">positive</span> energy that might help other people.<br /><br />I can't imagine infusing Trenton every day. I can't imagine him having a port or having a port infection. <span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">Inhibitors</span>. .. . .would probably have to join the wine of the month club! Recently, we lost a member of the group. A young boy around Trenton's age passed away because he didn't have access to care and could not receive his factor fast enough. The love and support this group showed to this family made me cry. . . . several times!<br /><br />The things that these <span id="SPELLING_ERROR_6" class="blsp-spelling-error">Hemo</span> Moms go through every day makes my complaints in life look like nothing. These women are strong, resilient and more importantly advocates for their children every day. Even though I have been active in the hemophilia community since 1990, I have learned more from this group in recent months than I have at some conferences. <br /><br />I feel very blessed that Trenton has had so little incidents. Hemophilia is still part of our life. I still pray each night that God would look over him and keep safe. I realize, though, that we all have challenges in our daily life <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">whether</span> it is Hemophilia or something personal that is holding us back. What do we do with these challenges? <br /><br />I know that next time I think about throwing a <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">pity</span> party for myself, I will turn to my "<span id="SPELLING_ERROR_9" class="blsp-spelling-error">Hemo</span> Friends" group. How can I support these parents and friends? How can I put my energy into something positive instead of a glass of wine? <br /><br />I head to Chicago in less than two weeks for the National Hemophilia Conference. I look forward to gaining knowledge that I can bring back to this <span id="SPELLING_ERROR_10" class="blsp-spelling-error">FB</span> group and also bring back to the Midwest Hemophilia Association. <br /><br />Cheers!Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com4tag:blogger.com,1999:blog-7986873422474940333.post-81986997067632111902011-07-07T18:47:00.002-05:002011-07-07T19:16:16.908-05:00Boy Scout Motto - Be Prepared<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWUPzOufG2rV0gv_7tIFQxNXCj_wKjm35vbyxIk6oCWyI7uWIibs4S0UhDgTDpG5dCs2DTHNRoSYT69TEPEqwTPVX9Xmex0btkvBAWSDrIwp59yUBN-JJXMQW1r13q0t86wKufUqskjiY/s1600/IMAG0395-1.jpg"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 180px; FLOAT: right; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5626768650017129442" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWUPzOufG2rV0gv_7tIFQxNXCj_wKjm35vbyxIk6oCWyI7uWIibs4S0UhDgTDpG5dCs2DTHNRoSYT69TEPEqwTPVX9Xmex0btkvBAWSDrIwp59yUBN-JJXMQW1r13q0t86wKufUqskjiY/s320/IMAG0395-1.jpg" /></a><br /><br /><div>The Boy Scout motto is "Be Prepared". I was a Girl Scout for over 10 years . . . not a Boy Scout. When Trenton fell recently I was "not prepared". </div><br /><br /><br /><div></div><br /><br /><br /><div>When Trenton was first born I was your typical paranoid Hemo Mom. (even though I said I wouldn't be) I had a medical alert bracelet on him at all times and one on the car seat. I carried the factor in a cooler with us on any trip over 30 minutes away. I had several ice packs in the diaper bags at all times. I had medical information on the fridge. I had medical information in the diaper bag . . even the travel letter.</div><br /><br /><br /><div></div><br /><br /><br /><div>Fast forward almost three years .. . . </div><br /><br /><br /><div></div><br /><br /><br /><div>Trenton had a horrible fall recently. We were crossing a parking lot and he did a face plant. He didn't put his hands up to catch himself. His nose and lip took the impact. There was more blood coming out of my child's nose than you would ever want to see. His cute white frog t-shirt was a throw-away within two minutes.</div><br /><br /><br /><div></div><br /><br /><br /><div>I reached in the diaper bag to find one ice pack. . . that was so old that is didn't work! After we controlled the bleeding I tried to call the treatment center. I didn't have the correct number in my phone and I didn't have the nurse's pager number. After calling the hospital's main number and waiting on hold I was able to talk to the nurse.</div><br /><br /><br /><div></div><br /><br /><br /><div>We went home and dosed with Amicar for the mouth bleed. After I gave Trenton the dose I realized that it was expired Amicar! (Do you see where I am going with the "not prepared")</div><br /><br /><br /><div></div><br /><br /><br /><div>I can write another three paragraphs about what went wrong, but I won't. Here are my suggestions for the future:</div><br /><br /><br /><div></div><br /><br /><br /><div>If you have a child with mild Hemophilia, always be prepared. Don't become so relaxed that you think nothing will happen to your child. You never know when you will be in a car accident, or have a silly fall in the parking lot. </div><br /><br /><br /><div></div><br /><br /><br /><div>*Check your factor and Amicar often. If you have a wall calendar, circle the expiration date on the calendar and maybe the date a month before so that you can have some on hand.</div><br /><br /><br /><div></div><br /><br /><br /><div>*Always have your child wear their medical alert bracelet! If your son is young like mine, they won't be able to tell a paramedic that they have Hemophilia in a medical emergency.</div><br /><br /><br /><div></div><br /><br /><br /><div>*Keep your HTC's numbers close. I had one number in my phone, but not the right one. I now carry our nurses' business card in my purse as well.</div><br /><br /><br /><div></div><br /><br /><br /><div>*Have all emergency numbers posted clearly in your house. Our numbers are on a dry erase board on the fridge. I realized that I hadn't updated our nurses' name and that my mother-in-laws number was no longer visible. </div><br /><br /><br /><div></div><br /><br /><br /><div>*We still take factor on longer trips. I would recommend doing the same. Check the NHF website before you go on a trip to find out if there will be an HTC close by.</div><br /><br /><br /><div></div><br /><br /><br /><div>Please feel free to post more tips below!</div><br /><br /><br /><div></div><br /><br /><br /><div>Remember . . . Always Be Prepared!</div><br /><br /><br /><div></div>Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com2tag:blogger.com,1999:blog-7986873422474940333.post-55146215933593818812011-07-07T18:10:00.003-05:002011-11-13T22:25:03.034-06:00It passed!Today was a crazy day. My baby boy woke up with over 100 degree fever and it was raining outside. I ran into work briefly, but came home to be with Trenton. As we sat resting in the basement, I heard my phone ring.<br />
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"I have confirmation that your bill passed, " Jay Bryant-Wimp. I was so excited. The Gateway Hemophilia Chapter and The Midwest Hemophilia Assocation have worked for years to get the Standards of Care for People With Bleeding Disorders Passed. This year I feel I gave it my all. Mary (from St. Louis) had given it her all for two years and couldn't make the drive this year due to work. (She still worked on getting the bill passed from home . . don't you worry) I felt like it was on me to get this bill through. <br />
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So many friends, family, and people from the Hemophilia Community helped get this bill passed. I had classmates from Warsaw that wrote letters to the Legislators. (These are people that I haven't spoken to in over 10 years!) Many people gave up a day or days of work to come to Jefferson City. Many people brought their families from 100's of miles away to talk to their Legislators.<br />
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I am excited that Missouri will now have something "on the books". There are going to be many changes in the coming years and it will help to have this bill.<br />
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I'll post more details about the bill soon!Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com2tag:blogger.com,1999:blog-7986873422474940333.post-5127403155251930982011-02-01T12:32:00.003-06:002011-02-01T12:43:37.704-06:00CSL Grant<div align="center"><span style="font-family:georgia;font-size:130%;color:#ff0000;">In the fall I applied for an advocacy grant from CSL Behring on behalf of the Midwest Hemophilia Chapter. I am attaching the grant below!<br /><br /></span>CSL BEHRING AWARDS GRASSROOTS ADVOCACY GRANT<br />TO MIDWEST HEMOPHILIA ASSOCIATION IN KANSAS CITY, MO<br />Grant provides support for patient initiative to obtain passage of Standards of Care.</div><div align="center"><br /></div><div align="center">King of Prussia, Pennsylvania, January 20, 2011 – CSL Behring, a global leader in the plasma protein biotherapies industry and a subsidiary of CSL Limited (ASX:CSL), has awarded an advocacy grant to the Midwest Hemophilia Association (MHA) through the Local Empowerment for Advocacy Development (LEAD) program. LEAD grants support the grassroots advocacy efforts of organizations committed to helping people who use plasma-derived or recombinant therapies to manage rare and serious diseases.</div><div align="center"><br />MHA will use its LEAD grant to bolster legislative efforts in support of passage of Standards of Care for People with Bleeding Disorders in Missouri. In addition, MHA will start grassroots advocacy in Kansas and also help educate the public about women’s bleeding disorders.<br />“MHA is delighted to receive this generous LEAD grant from CSL Behring. This grant will help our ultimate goal to make all our members better self-advocates,” Kristin Marema, MHA Board Member, said.<br /></div><div align="center">LEAD grants total $500,000 since 2008<br />According to Dennis Jackman, CSL Behring’s Senior Vice President, Public Affairs, the company has awarded 33 grants totaling approximately $500,000 since the LEAD program was established in 2008. Almost $100,000 was awarded in the current grant cycle to six patient organizations including MHA.<br /></div><div align="center">“CSL Behring is pleased to recognize and support these organizations, all of which play a vital role in expanding patient access to information and healthcare,” said Dennis Jackman, Senior Vice President, Public Affairs, CSL Behring. “We hope that these grants will help improve the lives of people with bleeding disorders, immune deficiencies and hereditary angioedema.” </div>Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com3tag:blogger.com,1999:blog-7986873422474940333.post-15359052822775971882011-02-01T12:20:00.003-06:002011-02-01T12:29:07.635-06:00AdvocacyAs many of you know, I've been working on the Standards of Care Bill here in Missouri. This year I've been to Jefferson City a couple times and already written numerous thank you notes. I feel like this is the year for Missouri! On March 1st we will meet in Jefferson City for "Bleeding Disorders Awareness Month". We are hoping (cross our fingers) that we will even get to meet the Governor! I would love to see many families come and show your support on this day! Because of our <span id="SPELLING_ERROR_0" class="blsp-spelling-error">CSL</span> Behring Grant your family might be <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">eligible</span> for mileage reimbursement. I'll post details on <span id="SPELLING_ERROR_2" class="blsp-spelling-error">FB</span> and here as they come.Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com0tag:blogger.com,1999:blog-7986873422474940333.post-79894842736442844932010-07-29T17:03:00.002-05:002010-07-29T17:09:43.579-05:00I'm AliveI had someone ask me a while back if I was still blogging about Trenton. The truth is that I stopped blogging because Trenton has been relatively healthy! I originally thought I would use this blog to share with other moms all of my experiences. Since we haven't had many accidents, I just stopped blogging. As I was going to sleep last night, I thought about this blog and how I could use it once again . . . ADVOCACY! I have worked this past year on helping to get Hemophilia legislation passed in Missouri. From now on, I will use this blog to update everyone on the legislative efforts going on here in Missouri.Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com2tag:blogger.com,1999:blog-7986873422474940333.post-10080393066140989012008-11-25T15:47:00.002-06:002008-11-25T15:53:14.637-06:00Blood ClotThis was the best slide show I saw at the national conference. Dr. Roshni Klkarni gave a fabulous session on how blood clots and what a diagnois means to us. Here is the website where you can view the animations:<br /><br /><a href="http://reddymed.com/">http://reddymed.com/</a>Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com1tag:blogger.com,1999:blog-7986873422474940333.post-16793083862937864982008-11-25T14:24:00.003-06:002008-12-01T13:55:54.047-06:00Insurance Meeting NHF ConferenceSally McCarty; Beth Sufian, JD; David Linney (speakers at this session)<br /><br />This session was kind of depressing, but invigorating at the same. Depressing because it's hard to think that most of the hemophilia community is still struggling to get coverage. Invigorationg because it fired me up to go talk to my legislators!<br /><br />Here are a couple things I did learn:<br /><br />Know the key terms when dealing with insurance. Do you know what COBRA is? What is your "premium"? Will adding your son or daughter raise your office premiums? Does your insurance policy cover what you need?<br /><br />NHF is starting a new program called Insurance 360. This will deal with insurance reimbursement issues. Currently you can call the HANDI number. 1-800-42HANDI<br /><br />If you have any legal questions, you can call the number below.<br />Bleeding Disorders Legal Hotline - call Toll Free 1-800-520-6154- Funded by a Grant from Baxter and Endorsed by the National Hemophilia Foundation<br /><br />Washington Days will be February 25 and 26. "Join NHF as they meet with your legislators to get support for raising lifetime insurance caps and other key issues."<br /><br /><br />**My husband just got group insurance for his small business. We found out after the fact that if we add Trenton on, we would not be able to use our wonderful home helath care company ARJ. We would have to get Trenton's factor from the insurance company! Blaa blaa blaa So, it looks like I'll be going back to work soon!Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com1tag:blogger.com,1999:blog-7986873422474940333.post-73661745490633069172008-11-19T16:27:00.002-06:002008-11-19T16:30:52.706-06:00GamesFacesTM<div align="center"><span style="font-family:times new roman;color:#000099;">This was forwarded to me. It is a new program by CSL Behring.</span></div><br /><div align="center"><span style="color:#ff0000;">CSL Behring launches GamesFacesTM program at National Hemophilia Foundation annual meeting Interactive online initiative provides six months of physical challenges for patients with hemophilia A Denver, CO-November 19, 2008-CSL </span></div><br />Behring announced today it launched the first challenge of GamesFacesTM, a family-oriented online initiative for patients with hemophilia A, at the 60th Annual Meeting of the National Hemophilia Foundation (NHF). GameFaces is designed to encourage real-life physical activity through a series of three customized challenges based on the individual's age, disease severity and current level of physical activity. Participants can now log on to the program website at www.HFSGameFaces.com, create their GameFaces character and begin the first challenge, which will run from today through January 10, 2009. CSL Behring, the providers of the hemophilia treatment Helixate® FS (Antihemophilic Factor, Recombinant), developed GameFaces to inspire hemophilia A patients to participate in physical activities and also to allow them to feel connected to other patients with this serious bleeding disorder. At the conclusion of each challenge period, those who have completed the challenge will be entered into a drawing to win a Nintendo® Wii(tm) game console. Nintendo Wii has been recognized as the next generation of video games and is known to inspire physical activity through games that require movement. "We are pleased to officially unveil GameFaces to the hemophilia community at the NHF's annual meeting, where the theme this year is 'Reaching New Heights'," said Garrett E. Bergman, M.D., Senior Director, Medical Affairs, U.S. Commercial Operations at CSL Behring. "GamesFaces promotes the kind of daily physical activity that will empower hemophilia A patients, from those with a mild form of the condition to those with the most severe form, to reach new heights in developing a healthy and safe lifestyle." "We appreciate CSL Behring's commitment to our children and their specific needs," said Rhonda Boni-Burden, mother of Alex, a 14-year-old boy with severe hemophilia A. "A program like GameFaces enables our children to build their self-esteem and helps manage these bleeding disorders, which is important to our families' quality of life." The program's physical challenges include both outdoor and indoor activities, which patients can complete on their own or with family and friends. The second and third challenges will occur in 2009 from January 10 through March 7 and from March 7 through May 2, respectively. Challenges are designed to be completed over a one-month timeframe during the challenge interval. Participants can track their progress by logging on to the program's website at www.HFSGameFaces.com. Children under 18 must have a parent's permission to participate. About HemophiliaHemophilia is an inherited bleeding disorder characterized by prolonged or spontaneous bleeding, especially into the muscles, joints, or internal organs. About 15,000 Americans have hemophilia. The disease is caused by deficient or defective blood coagulation proteins known as factor VIII or IX. The most common form of the disease is hemophilia A, or classic hemophilia, in which the clotting factor VIII is either deficient or defective. Hemophilia B is characterized by deficient or defective factor IX.<br /><br />For more information, visit www.cslbehring.com. ### Contact:Sheila A. Burke, Director, Communications & Public Relations Worldwide Commercial Operations CSL Behring610-878-4209 (o)484-919-2618 (c)Sheila.Burke@cslbehring.comHemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com0tag:blogger.com,1999:blog-7986873422474940333.post-63626759870629798612008-11-18T16:44:00.003-06:002008-11-18T16:55:50.780-06:00PSI<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPG2g-AigeWEWxtSBXqgeylbkHzqBfA-H0HnPIbumfl5ogsl3FP2dvZFXNxJS4SB6nDsxUfZDsEYyDSZQhyJx6f3HwgJcxTHhcgIHVp0QgUTF79n13Jk-nLMSayH-XPTouzVaUpn2Tqs/s1600-h/nov+012.jpg"><img id="BLOGGER_PHOTO_ID_5270134815511033970" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPG2g-AigeWEWxtSBXqgeylbkHzqBfA-H0HnPIbumfl5ogsl3FP2dvZFXNxJS4SB6nDsxUfZDsEYyDSZQhyJx6f3HwgJcxTHhcgIHVp0QgUTF79n13Jk-nLMSayH-XPTouzVaUpn2Tqs/s320/nov+012.jpg" border="0" /></a><br /><div align="center">Patient Services Items Programs</div>This is a national, non-profit organization that provides help to people in the bleeding disorders community. (They help other families with chronic conditions as well.) If you have insurance questions, or need help paying your monthly premiums - call them! If you need knee pads, elbow pads, a cryo-cuff - call them! There is a request form that you need to fill out. "PSI will consider your request independently, based upon a consensus list and need." (from their brochure)<br /><br /><a href="http://www.uneedpsi.org/">http://www.uneedpsi.org/</a><br />1-800-366-7741Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com0tag:blogger.com,1999:blog-7986873422474940333.post-66010795055562832982008-11-18T16:31:00.004-06:002008-11-18T16:39:12.320-06:00National Hemophilia Foundation - Denver, CO<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheGF2UbyotYFxGLuTqiRcqKj-Ov1WRjz06VgA8Z5Zt2Sh4MFCYh1ehQCDv_BElsy2nZOOFSYBMQlz44Blqaog_KIxlQeOmK7uOzpQTBFbQbRKCieocVJQC2Bzz7pGIKR-vxpqYrw2-HzI/s1600-h/nov+006.jpg"><img id="BLOGGER_PHOTO_ID_5270130421151135810" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheGF2UbyotYFxGLuTqiRcqKj-Ov1WRjz06VgA8Z5Zt2Sh4MFCYh1ehQCDv_BElsy2nZOOFSYBMQlz44Blqaog_KIxlQeOmK7uOzpQTBFbQbRKCieocVJQC2Bzz7pGIKR-vxpqYrw2-HzI/s320/nov+006.jpg" border="0" /></a><br /><div>Hello All-<br />I'm back from a great conference in Denver. I spent three full days learning as much as possible about hemophilia. I have sooo much to share. I will add posts about the different sessions I attended over the next few days. If anyone has questions, throw them out there! I don't know that I can answer them all, but I'm sure I can help you find the answer.</div>Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com0tag:blogger.com,1999:blog-7986873422474940333.post-90210331444373872672008-10-30T15:04:00.002-05:002008-10-30T15:10:04.534-05:00Good Websites<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7sFqi2mx0Rwg4dJJYl5PDspy4QWaQmnmak8MXfnhZYuyGFnRQkc2X9bnJumkIoqLtLsSfA1NErgQ5SDqoliYX2NPSqQLypMjti58cDgEYqh-p4tAw6gQF-NL2w_yU0jk3__zu4dZkHqk/s1600-h/october+pics+020.jpg"><img id="BLOGGER_PHOTO_ID_5263041729676300370" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7sFqi2mx0Rwg4dJJYl5PDspy4QWaQmnmak8MXfnhZYuyGFnRQkc2X9bnJumkIoqLtLsSfA1NErgQ5SDqoliYX2NPSqQLypMjti58cDgEYqh-p4tAw6gQF-NL2w_yU0jk3__zu4dZkHqk/s320/october+pics+020.jpg" border="0" /></a><br /><div align="center">Here are a few of my new favorite web pages!</div><br /><div></div><br /><div align="center"><a href="http://www.hemophilia.org/">http://www.hemophilia.org/</a> National Hemophilia Association</div><br /><div align="center"><a href="http://www.midwest-hemophilia.org/">http://www.midwest-hemophilia.org/</a> Midwest Hemophilia Association</div><br /><div align="center"><a href="http://www.bruzwear.com/">http://www.bruzwear.com/</a> Cool pants that have pads built into the knees!</div><br /><div align="center"><a href="http://www.comfycps.biz/">http://www.comfycps.biz/</a> Helmets that don't make your kid look silly!</div>Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com0tag:blogger.com,1999:blog-7986873422474940333.post-84378003939063209212008-10-30T14:32:00.002-05:002008-10-30T14:50:47.333-05:00Family Fun Fair<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJKD36uR8jBJ6cuQLEDq59Gqn5YgJfQ-C5vZOc8JhL5ZOHsdK5uiOi6Y_q7TckDXgdvfuwcPx_9dT3DXFiJdC-SWnTYUZJ2NRTZ9Gm1ItiiuDUQkmFp3dety69O7sS0muRCjHC0DltNOY/s1600-h/october+pics+037.jpg"><img id="BLOGGER_PHOTO_ID_5263036695443547890" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJKD36uR8jBJ6cuQLEDq59Gqn5YgJfQ-C5vZOc8JhL5ZOHsdK5uiOi6Y_q7TckDXgdvfuwcPx_9dT3DXFiJdC-SWnTYUZJ2NRTZ9Gm1ItiiuDUQkmFp3dety69O7sS0muRCjHC0DltNOY/s320/october+pics+037.jpg" border="0" /></a><br /><div>It has been a while now, but I wanted to write about MHA's Family Fun Fair. Every September, the Midwest Hemophilia Association puts on the Family Fun Fair. I have attended almost every year. I would suggest you attend if you have an event like this in your area. The last two years I have gained a wealth of knowledge and been able to network with many other families. The highlight of this year's event for me was an open discussion with athletes. There was a professional baseball player and weightlifter. To hear what they have been able to accomplish was great for me! My in-laws were able to attend the event as well. I think it was good for them to hear that we did not need to keep Trenton in a room full of bubble wrap! I remember going to the HTC right after Trenton was born and them telling us that Trenton should not weightlift competitively. (My husband is very much into weightlifting!) The young man (he was my age) at the conference had been on the Olympic weightlifting team and had traveled all over the world. He also was the kicker for his high school football team. I know most doctors would not sign off on the football, but it was good to see that it could be done. I am excited to watch Trenton grow and to see what activities he will want to get involved in when he is older!</div>Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com1tag:blogger.com,1999:blog-7986873422474940333.post-19154002880413455402008-10-30T14:25:00.002-05:002008-10-30T14:32:04.400-05:00No Circumsion<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH8ieGsFUlbTpy6UTkFbZr1tbTcngiNKUBlEAkIGfnTdJ_nbIdkXf088ptxD2uaJDVAqS8lZIIpl0fmdV4Y1KSpIual-uQX3LWowvWruB6elQJJCWq9Y_PcJD6h11A8gVtrqq1uozWiZo/s1600-h/october+pics+069.jpg"><img id="BLOGGER_PHOTO_ID_5263031903358380466" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH8ieGsFUlbTpy6UTkFbZr1tbTcngiNKUBlEAkIGfnTdJ_nbIdkXf088ptxD2uaJDVAqS8lZIIpl0fmdV4Y1KSpIual-uQX3LWowvWruB6elQJJCWq9Y_PcJD6h11A8gVtrqq1uozWiZo/s320/october+pics+069.jpg" border="0" /></a><br /><div>Well, we changed our mind. After temporarily switching HTC's, we decided not to have Trenton circumcised. My husband and I went back and forth so much. In the end we did not see the point in putting him through the trauma. My dad ended up being in the hospital that week due to cancer, so I'm glad we didn't have it done. I have relatives that are not circumcised, so Trenton won't be in the only one in the family! (I hope my son doesn't read this in 15 years and die of embarrassment! ha ha)</div>Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com0tag:blogger.com,1999:blog-7986873422474940333.post-15431538243681694122008-09-02T13:11:00.000-05:002008-09-02T13:34:39.538-05:00Ouch! - Part 2Grandma Jean and I loaded up the car and headed to Kansas City last week. Trenton had an appointment at the treatment center at Children's Mercy to discuss his circumcision. We started the appointment getting weighed and measured. He was laughing so loud at the bald nurse who took his blood pressure. I was thinking that this appointment wouldn't be bad after all. One of the nurses informed me right away that it might be difficult to find a vein in Trenton's chunky arms! Sure enough, when the nurses came in to draw blood they couldn't find anything. I had planned on staying in the room with him. I think I'm a pretty tough gal and I thought Trenton might be more calm if I was there. The nurses informed me that they would have to stick him in his head! I think I almost passed out at the thought. I grabbed Grandma Jean and we headed to the hall. They had to put a rubber band around his head to make the vein pop up. . . and then we heard the screaming. I felt like they were in the room with Trenton forever, but I know it was less than 15 minutes. For the first 5 minutes I was tough and strong, but then I couldn't take it any more and had to walk down a different hallway. Trenton has a good set of lungs, so I had to walk very far to not be able to hear him. After it was over Trenton ate and went to sleep. I was thinking if I can't handle them drawing blood, could I handle surgery? We talked to the doctor for a long time about the pros and cons. Here is the list I came up with. The cons: 1. It is a cosmetic procedure. There is no real medical benefit in having it done. 2. The day of surgery will be the day from hell! Trenton can't eat until after the surgery. So, my 20 lb. child who likes to eat all the time will go 6-12 hours with only some watered down juice. 3. Read the part again about getting blood drawn! The pros: 1. It's only going to happen once. 2. He will look like all of his friends. My 8 year old cousin has already been asking questions to his grandfather. A kid at school asked him in the bathroom why he "looked different". <br />After much discussion with my husband, we have decided to have him circumcised. I know some people will not agree with our decision, but there are many people who do. We have to do what we think will be best for our son. I'll keep you updated on the process!Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com2tag:blogger.com,1999:blog-7986873422474940333.post-64273057296253700982008-08-20T15:07:00.000-05:002008-08-20T15:31:13.079-05:00Circumcision - Ouch!We have made the tough decision to have Trenton circumcised this October. We could not do this at birth because we didn't know if he had hemophilia. If anybody has had experience with circumcision at six months, please let me know. I'm a little nervous! We have our pre-circ appointment next week, so I will let you know how it goes.Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com1tag:blogger.com,1999:blog-7986873422474940333.post-60062639669972154462008-08-20T14:52:00.000-05:002008-08-20T14:56:59.237-05:00Hemophilia CarrierThis is an article I wrote for the Midwest Hemophilia Association.<br /><br />It was the day before I left for Wilderness Camp last August. I was excited and even a little nervous. I thought I had butterflies in my stomach, but I would soon find out there was something else fluttering in me. That afternoon, my husband and I were overjoyed to find out that we were expecting our first baby! As I watched the kids at camp that week I knew that there was a chance that my child would be at camp in 8 years. I first found out about hemophilia when I was seven. I attended the very first <span class="blsp-spelling-error" id="SPELLING_ERROR_0">MHA</span> Wilderness Camp with my mom, dad and brother. From the beginning my dad made sure that I understood what hemophilia was and why I was a carrier. Now that I was pregnant though, I wanted to know more! There is not much information out there for carriers, so I have compiled a top five list of things you should know if you are a carrier who is expecting. I’m not a doctor or a nurse. These are just my personal opinions and things that I learned.1. Talk to your spouse or boyfriend. Within a week of meeting my husband Brian, we had discussed that I was a carrier. I tried to teach him as much as I could about hemophilia. Once I was pregnant he knew what to expect if Trenton did in fact have hemophilia. Even with this knowledge I know it was not easy for Brian to find out that his son would not be able to be a Marine. I do know that he appreciated knowing ahead of time all of the great things he COULD do after he was born. 2. Talk to your <span class="blsp-spelling-error" id="SPELLING_ERROR_1">HTC</span>.I was pretty worried about childbirth and I wanted to make sure everything was going to go as smoothly as possible. The week before I was due I talked to both Judy <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Kauffman</span> (Kansas City) and Lisa <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Holm</span> (Columbia). They both gave me excellent advice and also reassured me that I would be fine. 3. Meet with your anesthesiologist. I only have one regret in this process. I did not talk to the anesthesiologist ahead of time. I had planned on having an epidural. Both <span class="blsp-spelling-error" id="SPELLING_ERROR_4">HTC</span>’s had recommended having my factor levels tested during child birth because of the risk of hemorrhaging afterwards and also to see if you are able to have an epidural. My doctor and the hematologist at the hospital I delivered at did not think this was necessary. The anesthesiologist however would not give me the epidural until she knew what my factor levels were. I had taken <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Amicar</span> when my wisdom teeth were pulled and she was concerned about this. So, in the middle of child birth they checked my factor levels and then gave me the epidural. If I had met with the anesthesiologist ahead of time, she would have had my levels tested. I would have had the epidural almost two hours earlier and my husband and I would have been much happier people. 4. Don’t get frustrated when the cord blood clots.Because Trenton had a 50/50 chance of having hemophilia, they needed to test the cord blood. It clotted three different times. My dad and I initially thought we were dealing with incompetent nurses and doctors. I was getting really frustrated until I talked to Judy. She explained that this was very common. They ended up having to stick Trenton days after he was born. The day we got home from the hospital we found out that he had hemophilia. 5. Be an advocate for your child.Judy talked about this at the Family Fun Fair last year. It stuck with me and I’m glad it did. We knew that Trenton was to have NO sticks until after we found out if he had hemophilia. Right away a nurse tried to take him to the nursery for shots. Brian and I quickly explained that Trenton might have hemophilia. She left for a minute and then came back with post-it-notes that said “No Sticks Please”. She placed them all over his portable crib. I think she would have caught it if we <span class="blsp-spelling-error" id="SPELLING_ERROR_6">hadn</span>’t said anything, but it <span class="blsp-spelling-error" id="SPELLING_ERROR_7">doesn</span>’t hurt to speak up for your child!<br />Trenton is 4 months old now and weighs almost 100 lbs. (Not really, but he seems that heavy!) We are going to start facing new challenges soon like crawling. We have survived two rounds of shots with little to no bruising. In October Trenton will have some minor surgery. That will be our first experience with infusions. If you are a new mom or an expecting mom, please don’t hesitate to e-mail me with any questions.Hemo Momhttp://www.blogger.com/profile/15872948019440692295noreply@blogger.com1