tag:blogger.com,1999:blog-32774132684380317522024-03-07T22:21:55.523-05:00ProphyHolic HemoMomThe random thoughts of a Mother dedicated to taking care of her sons with hemophilia, staying involved in the hemophilia community and continuing to learn about hemophilia.Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.comBlogger55125tag:blogger.com,1999:blog-3277413268438031752.post-12915548380883683122015-01-03T02:23:00.001-05:002015-01-03T02:23:27.337-05:00Happy New Year! 2015 Well, I don't know about you... but 2014 went by so fast. I truly have to say I enjoyed every moment of it, I'm sad it's over. However, I'm excited to see what 2015 brings.<br />
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Last year to bring in 2014, we hosted a huge family pajama/waffle party and it was a great time. Also, it was my husband and I 10 year Anniversary of when he told me he wanted to date me ( <a href="http://prophyholic.blogspot.com/2013/05/four-years-of-unconditional-love.html" target="_blank">you can read about that here</a>), so we really went all out.<br />
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This year I just wanted to spend it with just my husband and kids. I really felt selfish because everyone in my family seemed disappointed that we were not hosting New Year's Eve. As much as I enjoy spending time with everyone, this year my heart was not into it. Two of the lessons I learned in 2014 is to listen to myself and follow my own intuition and it's okay to say, "No".<br />
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<a href="http://1.bp.blogspot.com/-p0KfGehQVAw/VKeNqgupQQI/AAAAAAAABB4/EZ7AC15XqCM/s1600/New%2BYear%2B2015.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-p0KfGehQVAw/VKeNqgupQQI/AAAAAAAABB4/EZ7AC15XqCM/s1600/New%2BYear%2B2015.jpg" height="480" width="640" /></a></div>
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That being said, my Husband and the kids and I had a great time bringing in the New Year together. My husband made a seafood boil with lobster, shrimp and corn. I made some T'bone steaks and huge backed potatoes. We watched BET video countdown, because I realized I haven't seen any music videos this year! After we danced to Taylor Swift performance on, "Dick Clark's New Year Rockin' Eve With Ryan Seacrest", we shook off 2014 by looking at pictures from the vacations we took that year.<br />
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I hope you brought into the New Year the way you wanted!<br />
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com2tag:blogger.com,1999:blog-3277413268438031752.post-9546187130108457152014-10-21T14:47:00.000-04:002014-10-21T14:47:47.904-04:00Random Thought: I Love October! I'm sitting outside today and the wind is blowing softly, the sun is shining warm and the leaves are making beautiful music as they begin to turn colors. Now I live in SC, so everybody's October is not like mine but I hope you have a day in the season like this. <br />
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Right now I want to go for a ride in my car...<em>sure wish I had a convertible so I could let the top down</em>...and take a drive on the Blue Ridge Parkway through the Mountains of NC; so I can really see the true beauty of this time of year. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-Ynk2GngZQgs/VEanNwIWKtI/AAAAAAAABBU/0TWIhJCE_7k/s1600/335268_10151121902189272_2130532197_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-Ynk2GngZQgs/VEanNwIWKtI/AAAAAAAABBU/0TWIhJCE_7k/s1600/335268_10151121902189272_2130532197_o.jpg" height="427" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Picture shared on <a href="https://www.facebook.com/blueridgeparkwayassociation" target="_blank">Blue Ridge Parkway</a> Facebook Page</td></tr>
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It's kind of crazy when you think about how hard the leaves have worked this summer to provide us shade and now they give us the most beautiful natural show before they fall from their home. While I write this, I begin to wonder, "Why do leaves change color?" Per the <a href="http://na.fs.fed.us/fhp/pubs/leaves/leaves.shtm" target="_blank">USDA Forest Service</a>, "As days grow shorter, and nights grow longer and cooler, biochemical processes in the leaf begin to paint the landscape with Nature's autumn palette."<br />
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So, as I sit here enjoying the breeze and the beautiful music of the leaves, I realize it's like the last song you hear at the end of a great party to let you know it's coming to an end. <br />
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I hope you enjoyed the warm weather, get your last outdoor activities done because it's coming to an end! Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com1tag:blogger.com,1999:blog-3277413268438031752.post-91422935193940721092014-03-27T11:59:00.001-04:002014-03-27T11:59:54.963-04:00My Hemophilia Awareness Month 2014
<span style="font-family: Calibri;">Hemophilia Awareness Month of 2014 I have become one of
them!<span style="mso-spacerun: yes;"> </span>I never imagined I would be when I
had my first son with hemophilia.<span style="mso-spacerun: yes;"> </span>When I
dated guys I felt the need to warn them that they never would be as well, if we
were to have a son.<span style="mso-spacerun: yes;"> </span>But now for the
first time I am a “Sports Mom” or “B-Ball Mom”!<span style="mso-spacerun: yes;">
</span><o:p></o:p></span><br />
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>Now, some of you
may have never had this thought or may have been a "Sports Mom" or parent since day one.<span style="mso-spacerun: yes;"> </span>Don’t get me wrong, I did allow my son to
play sports at recess and gym class.<span style="mso-spacerun: yes;"> </span>I
just never signed him up for a team sport before.<span style="mso-spacerun: yes;"> </span>My Dad, who had hemophilia would warn me
about the target joint bleeds and joint damage that could result from playing
sports.<span style="mso-spacerun: yes;"> </span>He would even have me grab his
knee while he bent it and I could feel the clicking and roughness of the knee
as he moved it back and forth.<span style="mso-spacerun: yes;"> </span>I grew up
watching him deal with chronic daily pain where just getting up to go to the
bathroom was a battle.<span style="mso-spacerun: yes;"> </span>Thinking about it
now I get chills, so I was “scared straight”.<span style="mso-spacerun: yes;">
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>Also, 11 years ago they were not pushing kids with hemophilia to play
sports…stay active…but not team sports.<span style="mso-spacerun: yes;">
</span>The only sports I “knew” was Football, Baseball and Basketball and they
were all rated 2.5 or higher on the </span><a href="http://www.hemophilia.org/NHFWeb/Resource/StaticPages/menu0/menu2/menu35/menu204/PlayingItSafe.pdf"><span style="color: #0563c1; font-family: Calibri;">National
Hemophilia Sports Rating by Activity Chart</span></a><span style="font-family: Calibri;">, so being a “Sports Mom” was not
something I imagined in my future.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>So, this
Hemophilia Awareness Month has been eye opening for me.<span style="mso-spacerun: yes;"> </span>I am aware that my father’s point of view
about having hemophilia and playing sports was based on him not having factor
available at home or being raised on prophy and wanting to protect his
grandsons from the pain he experienced daily.<span style="mso-spacerun: yes;">
</span>I am aware that yes playing sports we are taking a risk, but if I keep them
on their prophy regimen <em>(like the prophyholic I am)</em> and plan it around practice and games I can reduce that
risk.<span style="mso-spacerun: yes;"> </span>I am aware that I have to teach my
sons that we are taking a risk of playing an organized sport, but they have to
learn to listen to their body for warning signs of a bleed, which is hard
because you don’t know the “normal” aches from a beginning of a bleed.<span style="mso-spacerun: yes;"> </span></span><br />
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span></span><br />
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>My son has told me he is paranoid about getting a bleed when he's playing basketball so he tries not to play as hard or get too
rough.<span style="mso-spacerun: yes;"> </span>It’s hard to tell him he shouldn’t
be scared of a bleed when I’m on the sidelines just as afraid.<span style="mso-spacerun: yes;"> </span>I’m hoping over time that fear will fade and
praying at the same time he never has a joint bleed or develops a target joint
bleed.<span style="mso-spacerun: yes;"> </span>I am aware that they are having
fun and that’s what living your life is about.<o:p></o:p></span><br />
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span></span><span style="font-family: Calibri;"><a href="http://3.bp.blogspot.com/-0XObxVzKJRU/UzRDtQLuupI/AAAAAAAABAM/8kEbFhjboJw/s1600/Laith+baseball.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-0XObxVzKJRU/UzRDtQLuupI/AAAAAAAABAM/8kEbFhjboJw/s1600/Laith+baseball.jpg" height="338" width="400" /></a></span><br />
<span style="font-family: Calibri;"> It’s only been
two weeks since I’ve become a “Sports Mom” and it’s exciting!<span style="mso-spacerun: yes;"> </span>Laithan is doing great at T-ball.<span style="mso-spacerun: yes;"> </span>He throws the ball so good the other parents
joked, “We need to see his birth certificate to confirm he’s only 4!” His twin sister, Layla, is getting over her shyness a little and slapping hands with the other parents. The both of them are really enjoying learning how to play T-ball and being out with other kids.<span style="mso-spacerun: yes;"> </span></span><br />
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<a href="http://2.bp.blogspot.com/-qAVeYMnzXDY/UzRF_eCwVOI/AAAAAAAABAg/8z7JVRGG7yY/s1600/PicsArt_1394890125956.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-qAVeYMnzXDY/UzRF_eCwVOI/AAAAAAAABAg/8z7JVRGG7yY/s1600/PicsArt_1394890125956.jpg" height="400" width="400" /></a></div>
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span> </span></div>
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<a href="http://3.bp.blogspot.com/-t9fvUb57sKM/UzRDwxogsmI/AAAAAAAABAU/59P092v3qws/s1600/mark+b-ball+1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-t9fvUb57sKM/UzRDwxogsmI/AAAAAAAABAU/59P092v3qws/s1600/mark+b-ball+1.jpg" height="400" width="235" /></a><span style="font-family: Calibri;"> Marques is loving being on a Basketball team.<span style="mso-spacerun: yes;"> </span>He wanted to play because his friends were
playing, but they didn’t get on the same team so I thought he would lose interest.<span style="mso-spacerun: yes;"> </span>The opposite has happened.<span style="mso-spacerun: yes;"> </span>He can’t wait to get to practice.<span style="mso-spacerun: yes;"> </span>It’s almost like letting a caged bird out for
the first time.<span style="mso-spacerun: yes;"> </span>He said to me the next
morning after the first practice, “Maybe I could be the first hemophilia NBA
player?!”<span style="mso-spacerun: yes;"> </span>I just said, “Maybe”.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>I even see a new light in my husband’s eye
watching his boys play a team sport.<span style="mso-spacerun: yes;"> </span>He
even decided to become the Assistant Coach for Marques Basketball Team. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>This is a new
beginning for us.<span style="mso-spacerun: yes;"> </span>I’m ready to invest in
some “B-Ball Mom” t-shirts!<span style="mso-spacerun: yes;"> </span>I know I had
fun shopping for all the equipment and sneakers.<span style="mso-spacerun: yes;"> </span>I tried not to go too crazy getting the twins
T-ball sports bags, but I may have to splurge in getting them baseball shirts
with their names.<span style="mso-spacerun: yes;"> </span>I know….. the newness
will wear off…. and the running around trying to get everyone to practices and giving
up my quiet Saturdays because of games will be taxing, but that’s the life of a
“Sports Mom”, lol!</span></div>
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<span style="font-family: Calibri;"> Hopefully, you won't get too tired of me sharing my pictures on <a href="http://www.facebook.com/prophyholic" target="_blank">Prophyholic Facebook</a> page!</span></div>
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<span style="color: red;"><span style="font-family: Calibri;">Have you allowed your child to play a Team Sport rated 2.00 or higher activity rating?<span style="mso-spacerun: yes;"> </span>Has the fear of your child
getting hurt diminished? <o:p></o:p></span></span></div>
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com1tag:blogger.com,1999:blog-3277413268438031752.post-59231254354976963852014-01-18T17:46:00.000-05:002014-01-18T18:40:12.982-05:00Needle Free Vaccinations! Keeping Laithan up to date on his vaccinations was one of the rough times when caring for a child with hemophilia. You have to coordinate him getting factor from the hematologist around the same time he has to receive his vaccinations shots from the pediatrician. I know some Moms go to an Hemophilia Treatment Center who take care of both, but I didn't.<br />
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A child with hemophilia has to receive his vaccinations shots subcutaneously, under the skin instead of in the muscle, like regular patients to avoid a muscle bleed. You have to hold pressure and ice on the spot for at least 5-10 minutes after the needle stick, for extra precaution. It is so hard trying to hold ice packs on those little thighs and console an infant crying hysterically at the same time. Most infants with hemophilia are not on a regular schedule of factor yet because of the difficulty in finding a good vein to infuse the factor, so most likely he just survived that ordeal at the hematologist. </div>
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This Ted Talk video introduces a needless way to get a vaccination that I'm sure would be a welcomed technology in the hemophilia community. It's called "Nanopatch", developed by Professor Mark Kendall, Bio-engineer and delivers the vaccine through the skin. Per his discussion, its more effective than our current system. Sign me up for anything needless and less stress and care for a child with hemophilia! <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://newswatch.nationalgeographic.com/2012/11/26/nanopatch-administers-vaccines-painlessly/" style="margin-left: auto; margin-right: auto;" target="_blank"><img alt=" Professor Mark Kendall uses the device he designed and patented to attach a Nanopatch to a child’s forearm. Brisbane, Australia, 2012. Photo: ©Rolex Awards/Julian Kingma." src="http://newswatch.nationalgeographic.com/files/2012/11/Mark-Kendall-photo-1.jpeg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: #eeeeee; color: #777777; font-family: Arial, Helvetica, sans-serif; font-size: 10px; line-height: 14px; text-align: start;">Professor Mark Kendall uses the device he designed and patented to attach a Nanopatch to a child’s forearm. Brisbane, Australia, 2012. Photo: ©Rolex Awards/Julian Kingma.</span></td></tr>
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<iframe allowfullscreen="" frameborder="0" height="315" mozallowfullscreen="" scrolling="no" src="http://embed.ted.com/talks/mark_kendall_demo_a_needle_free_vaccine_patch_that_s_safer_and_way_cheaper.html" webkitallowfullscreen="" width="560"></iframe></div>
Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-48616043226415053362014-01-11T01:11:00.001-05:002014-01-25T17:33:31.834-05:00Hemophilia Shout Out during AFC Divisional Playoffs! The hemophilia community is such a small community compared to cancer or sickle cell disease, so I just jump for joy when I come across a hemophilia shout out to help spread awareness.<br />
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During the busy AFC Divisional Playoffs, Indianapolis Colts Cornerback, Josh Gordy was chosen as a feature player to discuss his interest. Since he is a huge Advocate in spreading awareness of hemophilia, our community was given a shout out! The writer, Stephen Holder, even let him elaborate on what hemophilia was and give an example of some of the complications having hemophilia causes his nephew, Nolan Andrews, who has severe hemophilia A with an inhibitor. <br />
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Clink link to read article by Stephen Holder for The Star Press Jan 10, 2013:<br />
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<a href="http://www.thestarpress.com/article/BG/20140110/SPORTS03/301100042/Colts-Q-Josh-Gordy-Fighting-hemophilia-small-town-product" target="_blank">Colts Q&A Josh Gordy: Fighting Hemophilia, Small Town Product</a><br />
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<a href="http://stonemountain.patch.com/groups/around-town/p/packers-gordy-to-lead-trot-to-clot-walk-at-park" target="_blank"><img border="0" src="http://1.bp.blogspot.com/-zf_cT1fQLPE/UtDfMrQSgEI/AAAAAAAAA_A/8FmqQV_H2JA/s1600/120cd582a242b8daec225b92d46f2d67.jpg" height="266" width="320" /></a></div>
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Gordy supporting Hemophilia of Georgia "Trot to Clot Walk" 2011</div>
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So of course I have to support the Colts this weekend in beating the New England Patriots this weekend!!Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-8969118916366764512014-01-10T01:37:00.002-05:002014-01-25T17:33:04.853-05:00You Could Kill Him Could you imagine having a child you could not bear hug?! That's like having corn flakes but no milk, pizza with no cheese or music without rhythm! I think I bear hug my children several times a day! <br />
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Unfortunately, that was not the reality for Hemophilia Mothers in the 1960's, per the below Newspaper photo description. It actually saddens me to think that my Grandmother would have been scared to bear hug my father, for fear that she could kill him. <br />
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Thankfully, this is no longer the belief and with regular prophy treatment it should no longer be a concern! Not giving my son a bear hug after "factor time" is not something neither of us could do without.<br />
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<a href="http://1.bp.blogspot.com/-DiMqs6ttzgM/Us-PTvSNoAI/AAAAAAAAA-0/f_2FVYSiMMI/s1600/timmy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-DiMqs6ttzgM/Us-PTvSNoAI/AAAAAAAAA-0/f_2FVYSiMMI/s1600/timmy.JPG" height="640" width="494" /></a></div>
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Photo found on <a href="http://www.ebay.com/itm/1963-Press-Photo-Timmy-Strohbach-National-Poster-Chid-for-Hemophilia-Foundation-/350968334611?pt=Art_Photo_Images&hash=item51b757c913" target="_blank">ebay</a> for $27.00</div>
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<b> Release in AM’S 1/14 For use with UPI “Woman to Woman” Story by Patricia McCormack. NXP1363652-1/14/62 New York: Virginia Strohbach can’t give her son , Timmy, 4, all the bear hugs he deserves. Bear hugs could kill Timmy – sick with hemophilia. Mrs. Strohbach, of Miami FL. (shown with youngster) and her husband, Carl, were in New York to help Timmy accept an honor, a title “National Poster Child” for the 1963 fund-raising drive of the National Hemophilia Foundation.</b> </div>
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<br />Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-52746555166759113422013-11-20T16:42:00.000-05:002014-01-25T17:31:23.190-05:0030 Day Thankful Challenge: Thankful for "Factor Time" during the maturing age! So on the <a href="http://www.facebook.com/prophyholic" target="_blank">Prophyholic Facebook</a> page, I’m doing the 30 days of Thankfulness Challenge and applying it to being a Prophyholic Hemophilia Mom. I’m nervous I won’t make it! I’m trying hard not to miss a day or undervalue the experience with easy or repetitive things to be thankful for.<br />
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On this journey I had an Oprah, “Aha moment”! I am thankful for the connection time I had while giving my son his factor to treat his hemophilia. I wanted to share this in a more detail blog post because I want every Mom to realize that “Factor Time” is a great experience and journey.<br />
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<a href="http://1.bp.blogspot.com/-dnrLyg46q20/Uo0qbmweuFI/AAAAAAAAA-c/oioarWgdzW8/s1600/mark+and+laith.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-dnrLyg46q20/Uo0qbmweuFI/AAAAAAAAA-c/oioarWgdzW8/s320/mark+and+laith.jpg" height="240" width="320" /></a> For most Hemophilia Moms, starting home infusion for prophy is rough on you! Most likely your child was an infant/toddler and you have to tell yourself that the pain of sticking him with this needle is less pain than a joint bleed. So, for years you go through this several times a week, filled with good days of cooperation and bad days of him fighting you tooth and nail. Eventually though, through my experience, as your child gets older and mature they realize that "factor time" is a must and you have his full cooperation and help.<br />
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As your going through your “normal” routine of “factor time”, you begin to talk about other things… How was school today? What’s for dinner? or just randomness discussions of life. THAT IS THE MOMENT to be Thankful for! In that moment you are connecting! In that moment we have the time to connect with them! Do you remember the anti-drug commercial encouraging parents to talk to your children about drugs…where a father and teen are in the car driving somewhere NOT TALKING…then the teen gets out…to show a missed opportunity to discuss saying no to drugs. That’s what I’m saying! “Factor Time” is that time to connect and talk. That was the time my son asked the craziest life questions or shared things with me he was thinking and we “heard” each other.<br />
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Now, that he is self-infusing those moments are gone. Yes, I could sit with him while he does it himself, but I want him to continue to feel that <a href="http://prophyholic.blogspot.com/2013/07/confidence-at-camp.html" target="_blank">independence</a>. I miss our talks though! That was our respected time by the family! I can’t wait to get to that point with Laithan, my 3 year old, when “factor time” is not spent with me trying to mentally persuade him with gifts, distractions or promises to sit still. I will however be mindful when that time does come for us to connect during “factor time” and be thankful for it!<br />
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I know life is busy and we are squeezing “Factor Time” into it, but when you do have that quiet time to connect…DO IT…they grow up so fast!<br />
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<span style="color: red;">Do you have any bonding rituals you do during factor time already? </span><br />
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-80125721176465122212013-10-25T13:14:00.000-04:002014-01-25T17:38:09.770-05:00Independent heartache!<div class="separator" style="clear: both; text-align: center;">
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My son at 11 just cooked his bowl of Ramen noodles by himself and my heart starting pulsating with …Well, I’m not quite sure with what!<br />
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My first instinct is to say fear, but why would fear of him being able to make his own noodles make my heart pulsate? He’s very responsible and I trust that he would pay attention to what he is doing. <br />
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Could it have been shock?<br />
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<a name='more'></a> When I walked into the room he was already done, rinsing out the pot in the sink. I know I was a little shocked, because I didn't realize my husband had been teaching him how to make his own noodles and he was READY to just go in the kitchen and cook without permission.<br />
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I was probably cooking whole meals before I was 11, since my Mom worked at night, so why was it such a big deal that he made his own noodles? Then it hit me, he is becoming independent! <br />
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First it was this summer when he no longer needed me to self-infuse his factor and now this! Two basic needs of survival that he doesn’t need me for anymore. I guess that is why my heart started pulsating…I realized that the things he NEEDS from me are changing. The past couple of months I've been noticing how mature he’s become and he’s even looking older! He hit the 5’ mark and this is his last year in elementary school. My heart is pulsating because my baby is turning into a pre-teen! I’m sure future post are going to be about him testing the boundaries, but today I’ll just take slow breaths to slow down my heart and look forward to him finally ironing his own clothes!<br />
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-84165476868389463082013-10-23T22:56:00.000-04:002013-11-20T16:43:13.071-05:00Three things I wouldn't have at my Halloween Party! We all know Halloween can be a bit bloody. If your child has hemophilia, your job is to avoid blood 365 days a year. I found a few Halloween themed ideas for a party, a Hemo Mom would probably not want to have:<br />
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1. A Bloody Fondue Bar</div>
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A Hemo Mom doesn't want to see blood flowing. We stay on our tight prophylaxis schedule to avoid such problems and a hell of a lot of money on factor!</div>
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<a href="http://sugarandspice-celeste.blogspot.com/2010/11/blood-fondue-bar.html" target="_blank"><img border="0" src="http://3.bp.blogspot.com/-GOdeLAB0P0g/UmhtGan5hFI/AAAAAAAAA9o/I48qgYx1HFE/s1600/blood+fondue.jpg" /></a></div>
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<a href="http://sugarandspice-celeste.blogspot.com/2010/11/blood-fondue-bar.html" target="_blank">Photo from Sugar and Spice by Celeste: Blood Fondue Bar</a></div>
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2. Blood Mary Shooters</div>
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A child with hemophilia see's his blood taken in test tubes at least once a year and almost every month for some. I think that would cause a lot of confusion for my 3 year old at the next Dr. appointment!</div>
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<tr><td style="text-align: center;"><a href="http://dreamalittledreamblog.wordpress.com/2013/10/05/haunting-halloween-party/" style="margin-left: auto; margin-right: auto;" target="_blank"><img border="0" height="320" src="http://2.bp.blogspot.com/-HpMknOGplkg/UmhvQ5iouKI/AAAAAAAAA90/Sm7YOtCK86k/s320/bloody+mary.jpg" width="244" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dream A Little Dream Blog : Haunting Halloween Party</td></tr>
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3. A Fake Bloody Bruise</div>
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Should I have to say why a Hemo Mom would not want to see her child running around with a fake bruise all day...including the reasons in number 1...bruises are not our friend!</div>
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<a href="http://1.bp.blogspot.com/-d42G5KCzjM4/Umhvxg0pAvI/AAAAAAAAA98/Ui1vxfvvJSI/s1600/bloody+bruise.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://1.bp.blogspot.com/-d42G5KCzjM4/Umhvxg0pAvI/AAAAAAAAA98/Ui1vxfvvJSI/s320/bloody+bruise.jpg" width="320" /></a></div>
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Now, our sons are probably numb to the sight of blood and may like all the bloody stuff! So click on the links and have fun!</div>
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-24706745753175976982013-07-30T16:27:00.001-04:002013-07-30T16:27:35.034-04:00Confidence at Camp <span style="font-size: 13.5pt;">It's been over a month since my last post...bad Mommy! The
good news is the kids are enjoying their summer. I think in the month of
June my oldest son, Marques, was never home on a Saturday. That was a big
deal to him and proudly noted since my children usually complain they don't do anything
all summer. Of course that's not true! Each year we try to go away for at
least 3 days, but their memory of it gets lost in the long summer. </span><br />
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<span style="font-size: 13.5pt;"> This summer though has
been full of new experiences. Marques went to camp for the first time.
He didn't want to go, but under pressure by me he went. Thank goodness,
he loved it and was already talking about going back when I picked him up.
I tell you, he was only gone 6 days, but it felt longer. This was
the first time I was apart from him for so long.... The best part is I
didn't have to worry if he was taking his factor, because he was at a bleeding
disorder camp. Last year I was not ready to let him go, I now regret that
because gaining his independence from me is something we both needed.<o:p></o:p></span></div>
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<span style="font-size: 13.5pt;"> Before Marques went to
camp, he did everything to prepare for "Factor Time" but didn't want
to stick himself with the needle. One time, I thought he was going to
hyperventilate as he dangled the needle over the back of his hand scared to
stick himself. I could feel myself getting frustrated because I stick him
3x a week, so, “you know what it's going to feel like!” For the life of
me, I could not understand the hesitation. I stayed as calm as I could and
kept trying to encourage him. Eventually, he stopped hyperventilating, but
still did not have the confidence that he was going be successful in getting a
flush back the first time. <o:p></o:p></span></div>
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<span style="font-size: 13.5pt;"> Well fast forward to
now, after Camp Burnt Gin bleeding disorder week, he's a Pro. Somehow, at camp he gained
confidence. I asked him if the Nurse helped him, he said, "No, I
just did it myself". One thing I know about my son, he doesn't like
anyone else to stick him except for me..even when we go get his blood work done
I stick him for the Nurse. So, I guess it was good I was removed from the
situation and he had to depend on himself. He also told me how he was encouraging another Camper to learn how to give himself factor and holding his hand!<o:p></o:p></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Marques first self-infusion after Camp Burnt Gin Bleeding Disorder Week</td></tr>
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<span style="font-size: 13.5pt;"> I have continued to
remove myself from the room while he does his factor. It's been a month
and I am still impressed how he has taken over his treatments. It’s
amazing how much kids mature and grow over the summer. I guess I need to start calling him a
Prophyholic! <o:p></o:p></span></div>
Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-26474565474085877682013-06-14T16:56:00.002-04:002013-06-14T17:29:05.096-04:00Father's Day Reminds Me I will Forever Miss My Dad<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-9pyDvLAgNCI/Ubt8mH0Zn8I/AAAAAAAAA74/GIsifunYUxc/s1600/Val+Bias+1.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://3.bp.blogspot.com/-9pyDvLAgNCI/Ubt8mH0Zn8I/AAAAAAAAA74/GIsifunYUxc/s400/Val+Bias+1.jpg" width="270" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">CEO of NHF Val Bias and I<br />
at Hemophilia of SC Annual Meeting 2013</td></tr>
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I was so surprised when I received the Hemophilia of South Carolina Annual Meeting agenda and <a href="http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=48&contentid=30" target="_blank">Val Bias</a> was coming to discuss, "<a href="http://www.mylifeourfuture.org/" target="_blank">My Life Our Future, Genotyping for Progress in Hemophilia</a>". Wow, the CEO of NHF coming to little old SC chapter meeting! I was excited because Val Bias was an old friend of my <a href="http://prophyholic.blogspot.com/2012/11/memories-of-my-dad-at-nhf-annual.html" target="_blank">Dad</a>, whom I never met.<br />
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So after the board dinner and meeting, I waited to introduce my family to Val Bias. I somehow was trying to convince myself that he wouldn't remember my Dad, so maybe I should change my mind. My husband encouraged me to stay and wait. I shyly said, "Hi, I'm Lovee' the daughter of Richard Johnson, do you remember my Dad?" Of course, he did remember my Dad and also commented that he was a good friend and a good leader in the community! I proudly introduced him to my sons. He smiled and said, "WOW"! </div>
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That Wow, made me feel emotional. I immediately thought about my Dad never meeting Laithan. Marques was only 6 years old when my Dad passed so, he doesn't have a vivid memory of my Dad. It was such a great feeling to introduce them to someone that had a high regard for my Dad. </div>
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I sometimes wonder what his involvement in the hemophilia community would be if he was still alive and healthy. It's only been 4 years since he died, but I would love to hear his opinion on how things have changed. I know that he was impressed with how well Marques was doing on prophy, but I would love to see his face when I tell him we are signing up Marques for basketball. We are even going to find Laithan a toddler baseball team, because the boy cannot get enough of playing it! </div>
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<tr><td class="tr-caption" style="text-align: center;">Marques age 1 and my Dad at <br />
Hemophilia Association of NJ fall gathering</td></tr>
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The effects of hemophilia on my Dad's life is different than my sons'. They have quick access to medicine and doctors. Also, because of what happened to him getting HIV, there have been advancements to make sure they are getting clean medicine. I will never lose the mindfulness of how big a deal it is that my sons are living a pain free life. My father lived in pain every day of my life. I know there were things he couldn't do or come to because of that pain. I do not want my grandchildren to have a father that is living in pain and restricted in what he can do with them or for them because of hemophilia. <br />
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<span style="text-align: center;"> </span>I really had the best Dad! My friends loved <span style="text-align: center;">coming over to my house to talk to him. He even tutored my best friend in math. My extended family adored my Dad. He was the leader in the family and everyone valued his opinion. As I got older, my Dad became my best friend. I had no secrets with him. My first husband hated how close we were. I guess there should be some things you keep between you and your husband, but I discussed everything with my parents. </span>I would always say, "My Dad said....", which I guess, I can see now, how that can get on somebody's nerves! I don't think I have really gotten over grieving his lost. I'm not in everyday depression, however, I do cry easily at any Dad related movies..you should of seen me at "<a href="http://www.thecroodsmovie.com/" target="_blank">The Croods</a>" movie. </div>
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I really do miss him! I believe that he can see my children, but I wish they could sit on his lap and he could play loud music for them to dance to and share his candy bag. He was the best grandfather and I feel like my youngest children missed out on knowing a great person. </div>
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It's Father's Day this weekend and his birthday this month and the next few weeks will be hard. I will share stories and pictures of him with my kids. My heart will continue to cry the lost of him, but I will continue to smile. I know he continues to live in me and through them.<br />
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Happy Father's Day Daddy!</div>
Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com2tag:blogger.com,1999:blog-3277413268438031752.post-60419850900190311422013-05-31T09:57:00.000-04:002013-05-31T09:57:27.111-04:00Four Years Of Unconditional Love<a href="http://1.bp.blogspot.com/-lBdtDHXuGdE/Uaio77xp6RI/AAAAAAAAA6c/YvPkVoZPO2c/s1600/POV_8292.jpg" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="http://1.bp.blogspot.com/-lBdtDHXuGdE/Uaio77xp6RI/AAAAAAAAA6c/YvPkVoZPO2c/s400/POV_8292.jpg" width="261" /></a><br />
Well, I almost let the month go past without mentioning my 4-year Wedding Anniversary to my Husband! He promised me unconditional Love and I have to say, so far, he has kept his promise. I think he knows, as soon as I don't feel unconditional love, he could have a crazy wife on his hands. I'm still not quite sure how he knew that was the one thing he had to say to guarantee a, "Yes, I will marry you".<div>
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I believe I mentioned in previous post that this is my second marriage. My first marriage, I was young and he was 9 years older, so I grew up and we grew apart. I heard a saying recently that God put certain people together sometimes just to create certain people. I like that saying and I have accepted that as our purpose. Someone wanting to marry me the first time who accepted the fact that I could have a child with hemophilia, I have to admit I thought it would never happen. Therefore, when I decided to get divorced with two children and one with a bleeding disorder, I still was not confident that someone else would want to marry me.</div>
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For the first two months after my first husband and I decided to divorce, I didn't tell anyone. I was embarrassed and felt like a failure. One night I was playing cards with some friends from work, had a few drinks (liquid courage), and casually mentioned that I was getting a divorce. A month later, one of those friends at a New Years Eve party pulled me aside and said, "I know you are getting a divorce and you will be back on the market soon and I just want to let you know I'm interested in dating you". He threw a few more lines in there, but I will spare you the details. It did help his case that soft music and candle-lights were setting the mood. So, this New Years Eve will be our 10 year Anniversary of actually being together! I know, I know I'm easy!</div>
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I have to give my Husband credit. He came into the relationship not knowing anything about Hemophilia. When he told his Mom, he was dating a Women who had a son with hemophilia she said, "The Royal blood disease". Yes, his Mom was in her 70's so she knew the old school description, but at least she was familiar. My Husband though, even as a new boyfriend came in and helped me a great deal. We moved in together early, but he would wake up in the morning and hold Marques while the Nurse did his prophy treatments three times a week, while I went off to work. He also started talking to my Dad about growing up with hemophilia. My Dad loved telling his horror stories of bad bleeds. My Dad also invited him to listen in on a Hemophilia meeting with other Men who shared their stories. </div>
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I think the stories made him nervous for my son, whom he grew to love as his own. I still think as a Stepparent, your thoughts and feelings are a little different than it actually being your blood child with hemophilia...my husband would argue differently. Anyway, my Husband was content with raising my children as his own; so we never had plans of having a child together. </div>
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Well a few months after getting married, those plans change because 4 months later I found out I was pregnant with twins! We had one night of playing around saying let's make a baby and we made two! So of course, we go through all the concerns of having another child with hemophilia. My husband surprisingly still remained okay with the reality. He didn't even want to find out the sex of the babies, where I on the other hand needed to know so I could prepare myself to expect another child with hemophilia. However in the end, someone else did want to marry me. My Husband continues to love me and our 4 children unconditionally. I pray each Anniversary that never changes! Love ya babe XOXO</div>
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com3tag:blogger.com,1999:blog-3277413268438031752.post-68504493986932487632013-05-07T09:05:00.001-04:002013-05-07T09:05:43.716-04:00Mother's Day is Mine, Mine, Mine!! I don't want to spend Mother's Day with my kids. Yes, I said it and I mean it. Let me say before there is any misunderstanding, I Love My kids very much. They mean the world to me and they are my world. Everyday, I spend 15 hours a day with 2 of the 4...the other 9 hours they are sleep. My children make me laugh and everyday I ask God to protect them and I pray he allows each of them to live a full happy life. But Mother's Day, I think should be exactly what it is called Mother'SSS Day, mine, mine mine! <br />
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<a href="http://4.bp.blogspot.com/-JdHw1v9St_k/UYj3TV3hCwI/AAAAAAAAA4o/Ws84kNlz9fY/s1600/20120421_160445.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-JdHw1v9St_k/UYj3TV3hCwI/AAAAAAAAA4o/Ws84kNlz9fY/s320/20120421_160445.jpg" width="320" /></a> Think about it this way. If I spend the day with my children, it's really not MY day. Yes, they may give me a special breakfast in the morning and I will have that, "Oh, Mommy we love you so much!," moment. But, who's going to have to clean the kitchen? You would think my Husband and he would wash the pots,...but would the kitchen really be clean?! If your lucky enough to be taken out to lunch or dinner, it's not like you didn't put the work into getting everyone together and out of the house. When you finally make it out to dinner, you can't ignore the messy hands and juice spills...nope your still a "Mother" on Mother's Day.<br />
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<a href="http://2.bp.blogspot.com/-KtkeE1oefs0/UYj5pvykqbI/AAAAAAAAA40/HilhE0zn3WQ/s1600/images.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://2.bp.blogspot.com/-KtkeE1oefs0/UYj5pvykqbI/AAAAAAAAA40/HilhE0zn3WQ/s1600/images.jpg" /></a> Imagine if you will, waking up in a cozy bed and the only noise is the sound of the sheets moving as you stretch. You reach over and call room service and you order blueberry pancakes (because no one else at home likes them but you), bacon and coffee. You turn on OWN and watch a little "Super Soul Sunday" while you enjoy your breakfast and you actually get to drink HOT coffee!! After your feeling both spiritually full and tummy full, you go take a long, long relaxing hot shower..because you don't have to worry about getting out before the kid's show on Sprout goes off or them coming in and out of the bathroom asking you for juice. You get dressed in a pretty dress, go out doing something you want to do. Something that you can't do with the kids like Antique browsing or what ever else you enjoy doing, but never seem to find the time to do.<br />
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I think you get the idea of why I don't want to spend Mother's Day with my kids. I know, Mother's Day was created for your family to appreciate you and I think they will after having a day with you gone. Just think how much bigger the hugs will be when you return. <br />
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At the same time, I know one day I will wake up on Mother's Day to a quiet house because all the kids are grown with their own families. I'll have my blueberry pancakes and sit and think about Mother's Day past... waiting for the phone to ring.<br />
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-23300584680136017622013-04-29T14:48:00.001-04:002013-04-29T14:48:17.476-04:00Budget Diet To Pay Medical Bills B-U-D-G-E-T...it's not a very attractive word! It automatically makes me think of things I wish I could buy, but can't. I have to admit that I do cheat on my budget from time to time <strong><em>shh, don't tell the husband</em>!</strong> In the end though I figured it will all balance out. What doesn't help my budget is when I have to fit in a medical bill. <br />
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It's that time of year where the boys have had their factor levels checked, iron, hep, etc...and because Laithan broke out with a crazy rash I had an inhibitor test done. Wow, is all I could say when I saw the bill. Laithan's blood work totaled $1,907 reduced to member rate of $1,319.65, but I still get a bill for $663.93 (500 deductible plus 20% co-insurance). Add on another bill for Marques that just came in for $498, I can't even look at the clothes ad in the paper. I'm going to have to go on a strict budget diet to payoff these new medical bills. I'm thinking,.. I should get them on a different blood work schedule so I can have time to pay off one bill before another one comes!<br />
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What I will look at in the paper is the coupons! Clipping coupons have really helped me reduce my food budget for the month and it's also one of the monthly expenditures I can control. <em><strong>If I could use a coupon for the mortgage, that would help</strong>. </em>Couponing can be quite tedious and takes a lot of planning, since I'm a stay at home Mom I can take those extra hours on each week. I look at it as a part-time job because I'm saving our family atleast $400 a month on groceries! <br />
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Total for the above was $30.34 saving <span style="color: red;"><strong>$89.68 (75%)!</strong></span></div>
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I've been couponing for about 2 years now and I'm not an expert, but I have reduced my grocery bill 40%-60% consistently. My motto to the kids is, "If its not on sale, don't ask me for it!" When huge medical bills like these two new one's come in, using coupons creates more wiggle room in my budget. I don't stockpile like the show on TLC, "Extreme Couponing", because no one needs that much toothpaste and yogurt, but I will buy enough of an item on sale to last until the next sale cycle. <br />
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One of the websites I use to help cut down on planning my shopping trips is <a href="http://www.southernsavers.com/">www.SouthernSavers.com</a>. This site is regionally based on coupons in my area, so definitely look for one in your area. Also, you can look for local coupon meetup groups where you can trade in those dog food coupons for items you need. My local group meets at the library. I haven't gone yet but I may soon. <br />
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Besides going back to work, I don't know how else I could manage with these extra medical bills. I'm lucky and grateful to have insurance. After I get past the co-pay and deductable stage, I'm even happier!<br />
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<span style="color: red;">How do you budget in medical bills?</span>Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-76206496931703920942013-04-19T09:34:00.000-04:002013-04-19T09:34:43.787-04:00My Son Dances Like John Travolta! My favorite childhood memories are the times my Dad would blast music through the house and I would sing and dance. It was one creeky spot on the floor that if you danced there, it would make the needle skip on the record player. My Dad would shoot me a quick look. Good thing they came out with CDs, because the stress of one of his records getting scratched inhibited my dance moves! <br />
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All these memories came rushing back the other day, when I was listening to an oldies station...oldies for me is the 80's...and one of the songs my Dad and I played over and over again came on. I jumped up, turned it up and started to dance around the livingroom. I was home alone, at first, so I really turned it up and let loose. Towards the end...because you know back then songs were much longer..my son came home from school. At first he didn't know what to think! I told him to come dance with me! That's when he busted out the John Travolta dance move from "Staying Alive" hips going and all! Funny, he has never seen the movie, but he knew the moves.<br />
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I was concious of this moment, because I wanted him to remember this moment. One day when he's older and has his own family, I want him to have a flashback moment of him and Mom dancing in the living room. I also want him to create the same memory for his kids. My son's childhood memories will be much happier than my Dad's were. Because of his hemophilia, My Dad had many childhood stories of him being in the hospital and things he couldn't do as a kid. My son's childhood memories, thank God, will not be like my Dad's. Hopefully, he will have more stories about how crazy his Mother was!<br />
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<span style="color: red;">When is the last time you danced with your son?</span> Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-54809003793428630422013-03-26T09:30:00.000-04:002013-04-29T15:11:55.012-04:00I'm A Recovering "Bad Consumer", Part II In <a href="http://prophyholic.blogspot.com/2013/03/im-recovering-bad-consumer-part-1.html" target="_blank">Part 1</a>, I confessed to not staying up with the NHF updates and not knowing about the Standard of Care to expect for my son. I always depended on my Father for information. After he died, so did the information. My father was my resource and my first call if I thought my son had a bleed. <br />
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<tr><td class="tr-caption" style="text-align: center;">Hemophilia of South Carolina Symposium meeting 2012</td></tr>
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My father was very involved in the Hemophilia Association of New Jersey, so I went to events with him, but never joined as a Mother of a son with hemophilia. When we moved to SC, I attended my first family weekend Symposium with him and took my family. Now that I reflect back, it was still as his daughter but not as my son's Mother. I don't know if that makes sense, but he was my source of information and my guidance of how to care for my son. So, when my father died...so did my information as well as my relationship with any hemophilia Chapter. <br />
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For the first 3 years after my father's death, I didn't think about how important it was to be involved in the hemophilia community. This blog grew out of a loneliness and a craving for information, especially after I had my second son with hemophilia and he started having bleeds. Once I started writing and researching information, I realized that it was a community out there...I just didn't belong. I also didn't realize that not belonging, meant not being counted. I was being a "Bad Consumer".<br />
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Since I go to a Hematologist and not a HTC, I was not being counted as a member of the hemophilia community. Not being counted meant we are not part of the <a href="http://www.cdc.gov/ncbddd/blooddisorders/udc/aboutus.html" target="_blank">CDC Universal Data Collection System</a> used to research and understand issues across the lifespan of a person with a bleeding disorder. Also I have learned, not being counted at an HTC means less funding from the CDC to provide this specialized care. I found out that I only need to go once a year to be counted and can still be seen by my Hematologist. Also, a person with a rare disease needs to be counted. I think strength comes in numbers when you are fighting for government programs or showing the number of people these programs are helping.<br />
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Knowledge is definitely power. In my recovery to become a "Good Consumer", I'm going to take the boys to visit a HTC. For the past two years, I also joined my South Carolina chapter and I attend as many events as I can. I also jointed the North Carolina Chapter recently, since I live on the boarder of both states. I figured, I should be able to attend any program that was close to me<span style="color: red;">.</span><br />
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<span style="color: red;"> Have you found it important to stay involved with your local Chapter and attending an HTC? </span></div>
Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-19976475592249647922013-03-05T10:48:00.001-05:002013-03-12T12:48:00.886-04:00I'm A Recovering Bad "Consumer" - Part 1 <span style="font-family: "Times New Roman","serif"; font-size: 12pt;"><span style="mso-spacerun: yes;"> </span>At the <a href="http://prophyholic.blogspot.com/2012/12/hsc-educational-symposium-and-family.html" target="_blank">Hemophilia of South Carolina 2012 Educational Symposium Family Weekend</a> the fact hit me that I was a bad "Consumer"
in the Hemophilia Community. First let me say, I've heard the term
"Consumer" before, but I thought it just meant I was a consumer of
blood products. <span style="mso-spacerun: yes;"> </span>But the word
"Consumer" means so much more!<o:p></o:p></span><br />
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt;"><span style="mso-spacerun: yes;"> </span>Michelle
Rice, Director of Public Policy NHF, explained how to be a "Good
Consumer". At the symposium we learned:<strong> A "Good Consumer" is
educated and informed, not only about their bleeding disorder but about the
rules and standards that apply to the various members of their care team
(pharmaceutical companies, specialty pharmacies & medical professionals).</strong> <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt;"><span style="mso-spacerun: yes;"> </span>Now, I was knowledgeable about the care I
needed for my son: factor, supplies and doctor appointments.<span style="mso-spacerun: yes;"> </span>That is all I<strong> thought</strong> I needed to know about!
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt;"><span style="mso-spacerun: yes;"></span>Before, I had Laithan, Marques was on
prophy with his port. <span style="mso-spacerun: yes;"> </span>We did our prophy schedule;
he was doing great with no bleeds, so I felt I was doing a great job as a Consumer.<span style="mso-spacerun: yes;"> </span>The home health care company would call every
month and ask what I needed and I would just say send me “everything”.<span style="mso-spacerun: yes;"> </span>I was on auto pilot for about 5 years.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-EF8KEtWdZC0/UTYR1GwzpiI/AAAAAAAAA18/NtFAfPRoLXs/s1600/factor+box.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-EF8KEtWdZC0/UTYR1GwzpiI/AAAAAAAAA18/NtFAfPRoLXs/s320/factor+box.jpg" width="265" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Twins using factor styrofoam boxes as seats</td></tr>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt;"><span style="mso-spacerun: yes;"> </span>I was very happy with my Home Healthcare
Company and had no complaints, but I was not a “Good Consumer” because I didn’t
know about <span style="mso-spacerun: yes;"> </span>MASAC (#188) <a href="http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=57&contentid=1107" target="_blank">RecommendationRegarding Standards of Service for Pharmacy Providers of Clotting FactorConcentrates for Home Use to Patients with Bleeding Disorders.</a><span style="mso-spacerun: yes;"> </span>I didn’t know to expect a <b style="mso-bidi-font-weight: normal;">Standard of Service</b>.<span style="mso-spacerun: yes;"> </span>Luckily, I didn’t have a problem, but I should of known what to expect from my home health care company.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>If I
kept up to date on the recommendations from MASAC, I wouldn’t have been surprised
when I tried to order my son a larger helmet last year, they could no
longer supply them.<span style="mso-spacerun: yes;"> </span>Knowing about changes
like this is what it takes to be a “Good Consumer” and giving both my sons the
best care to live a happy and healthy normal life. Through my recovery I discovered a lot of information I've missed and now check regurlary for updates.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt;"><span style="mso-spacerun: yes;"> </span>In Part II, I’ll disclose other ways I'm recovering from being a bad "Consumer”.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12pt;"><span style="color: red;"><span style="mso-spacerun: yes;"> </span>Do you check NHF website for updates on
changes to stay informed?<o:p></o:p></span></span></div>
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-39062459821810119622013-02-28T23:02:00.001-05:002013-03-05T10:59:32.138-05:00Rare Disease Day 2013 - Video Thursday <span style="font-family: Georgia, "Times New Roman", serif;">Whenever I tell someone my son has hemophilia, it never starts with..”It’s a rare disease. <span style="mso-spacerun: yes;"> </span>I just always say, "It's a bleeding disorder".<span style="mso-spacerun: yes;"> </span> But in actuality, it is a rare disease. I am use to hearing the term disease to describe an illness a person catches, but not one they are born with.<span style="mso-spacerun: yes;"> </span>A disease in fact is more than just something someone can catch, but it is </span><a href="http://en.wikipedia.org/wiki/Disease" target="_blank"><span style="font-family: Georgia, "Times New Roman", serif;">defined</span></a><span style="font-family: Georgia, "Times New Roman", serif;"> as: an abnormal condition that affects the body of an organism.<span style="mso-spacerun: yes;"> </span></span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;"><span style="mso-spacerun: yes;"> </span>In the United States a <strong>rare disease</strong> is defined as any disease affecting fewer than 200,000 people.<span style="mso-spacerun: yes;"> </span>Since Hemophilia only affects 20,000 people in the U.S., it is considered a rare disease.<span style="mso-spacerun: yes;"> </span>In a need to join the community of over 7,000 other diseases that affect people in the world, Rare Disease Day was formed.<span style="mso-spacerun: yes;"> </span>Rare Disease Day is a celebration to bring attention to these rare diseases and bring the different diseases together, across borders, to have a stronger voice and encourage research, education and funding.</span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"><span style="mso-spacerun: yes;"> </span>My video today was created by the </span><a href="http://www.hemophiliafed.org/news-stories/2013/02/rare-disease-day-2013/" target="_blank"><span style="font-family: Georgia, "Times New Roman", serif;">Hemophilia Federation of America</span></a><span style="font-family: Georgia, "Times New Roman", serif;"> representing the hemophilia community in that celebration:</span><br />
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<a href="http://vimeo.com/60290290">Rare Disease Day 2013</a> from <a href="http://vimeo.com/user2254416">Hemophilia Federation of America</a> on <a href="http://vimeo.com/">Vimeo</a>.<br />
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<span style="font-family: Georgia, "Times New Roman", serif;"> This is the first year I've heard of Rare Disease Day and next year I hope to do more to spread the word. I did email my newspaper, but they did not respond. I also sent the online letter to my State Representatives. Next year I want to do more.</span>Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-61617335671509987122013-02-14T17:26:00.000-05:002013-03-05T10:57:44.469-05:00Do you have a "Date Night"? - Video Thursday<a href="http://3.bp.blogspot.com/-sYFSbGmaJ5E/UR1bzUru6vI/AAAAAAAAA1c/3ZBLgtUA6Lw/s1600/date+night.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="175" src="http://3.bp.blogspot.com/-sYFSbGmaJ5E/UR1bzUru6vI/AAAAAAAAA1c/3ZBLgtUA6Lw/s200/date+night.jpg" width="200" /></a> <br />
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Today is Valentine's Day! The day we look to our husband or significant other for a special kiss or a special gift. If your lucky you may even get taken out for a meal, which means no cooking tonight for you!! My husband and I don't do anything big for Valentine's Day. He usually gets me a card from him and one from the kids. <br />
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Today I stuck a little note in his lunch: <br />
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<em> <strong>Roses are Red, </strong></em><em><strong> </strong></em></div>
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<em><strong> Violets are Blue.</strong></em></div>
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<em><strong> Even though you snore, </strong></em></div>
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<em><strong> I want to spend the rest of my life with you!</strong></em></div>
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He swears I snore louder than him. Sometimes we record it, but the jury is still out! <br />
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Anyway, besides a "Date Night" on Valentine's, I think it does a marriage good for parents to take a night off from the everyday. Parents dealing with a child with a chronic disease, such as hemophilia, can still add stress to the relationship and lead to <a href="http://www.medpagetoday.com/MeetingCoverage/WFH/21099" target="_blank">divorce</a>. <br />
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"Date Night" can give you time to reconnect! Don't get me wrong, it doesn't always have to be out of the house. Maybe you set time to wake up at 12:AM (when everyone else is sleep), lay a blanket on the bedroom floor, light a candle and share a bottle of wine..and what happens happens!<br />
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My Video Thursday is Real Talk: Date Night with Care.com<br />
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<span style="color: red;">So besides Valentine's Day, do you and your significant other take time out for "Date Night"? Does it help?</span></div>
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-33328012473676263612013-02-08T10:05:00.000-05:002013-03-05T10:57:24.637-05:00NHF Washington Days - Video Thursday<div style="text-align: center;">
<a href="http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=149&contentid=336&rptname=washington" target="_blank"><img height="175" src="http://www.hemophilia.org/NHFWeb/images/StaticPages/menu0/menu4/menu149/washingtonDaysLogo.jpg" /></a></div>
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The National Hemophilia Foundation annual <a href="http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=149&contentid=336&rptname=washington" target="_blank">Washington Day</a>s is planned for Wednesday, February 27 - March 1 to continue to advocate for the bleeding disorder community. I've never attended Washington Days and wanted to this year, but financially I can't. However, I am going to participate for the first time in my local chapter State advocacy day next month! I'm registering for that today and will take my oldest son Marques, so he can begin to understand what goes into him having access to medicine.<br />
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Obama's health reform has really put our community in a better position with insurance companies to continue to provide our son's with a "normal" life. I watched a hemophilia video before that reported that it could cost as much as $10,000,000 for a lifetime of factor since hemophiliacs are living longer and need to take factor at least 3x per week! Hence the term, "Million Dollar Babies", my Dad would use. I know insurance companies will continue to fight that and Medicare will not want to keep covering that cost in their budget. <br />
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The hemophilia community has had so many advances in the last 40 years. It was a dream to my father that his Grandsons would not suffer from hemophilia the way he did. No one is giving them a shorter life expectancy (except for life insurance companies...need to look into that again). Now that my father dream is reality (besides a cure) and our children can live a "normal" life pain free with proper care, insurance companies/government believe we are no longer in need, because people are not dieing from hemophilia...but, no one is keeping track of the deaths that are avoided because we are better able to provide<em> expensive</em> factor to our sons because of the available programs. Washington Days will continue to impact the legislative process.<br />
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My video this week is Obama 2012 Health Reform 2 year anniversary video. One of the families featured has hemophilia and how the reform has changed their family.<br />
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Whitehouse Online videos - You Tube </div>
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<span style="color: red;"> Are you attending Washionton Day or attending your local chapter advocacy day?</span></div>
Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-73544637367217719402013-01-31T14:14:00.002-05:002013-01-31T14:14:25.676-05:00Video Thursday - Self-Infusing A Port! Sorry, I didn't do a video last week...you sent so many upset emails...not! LOL The kids had me running around like crazy last week, but it did bother me I didn't do a post so I apologize.<br />
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This week I came across a video that I thought was amazing. A little boy self-infusing his own PORT! I've never thought about that when my oldest son had his port! I've never even seen anyone do it before! What strong will power a little boy has to have to self-infuse his own port!<br />
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Micah infusing posted by Mom4hemo</div>
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<span style="color: red;"> Has your son tried this? Are you willing to teach him how, after seeing this?</span></div>
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Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-91067146394330528272013-01-17T17:52:00.002-05:002013-03-05T11:00:36.993-05:00Encouraging Your Child With Health Issues- Video Thursday During the <a href="http://prophyholic.blogspot.com/2012/12/hsc-educational-symposium-and-family.html" target="_blank">Hemophilia of South Carolina 2012 Education Symposium Family Weekend</a>, we had a session presented by <a href="http://www.parentingchildrenwithhealthissues.com/AboutLisaGreene.html" target="_blank">Lisa Greene, BS CCP</a> -<em> </em>"Winning with Hemophilia; Raising Happy Healthier Kids". Lisa is a mother of two children with cystic fibrosis. She co-authored a book called,<em>"Parenting Children With Health Issues"</em>. <br />
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Its funny, I never thought about seeking out information on how to parent my children because they have a health issue! During the session, some of the things Lisa discussed hit home with the things we were dealing with; even with our teenage daughter who has asthma. Since I didn't win the book in the raffle...<em>dang</em>... I went to her <a href="http://www.parentingchildrenwithhealthissues.com/index.html" target="_blank">web page</a> to get more information. My son is getting older and getting back to learning how to self-infuse and we'll be retiring the helmet for gym/recess next year.. <em>yikes</em>. I need for him to take more responsibility with taking care of himself.<br />
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<tr><td class="tr-caption" style="text-align: center;">Marques practicing 2 years ago (8)..should of never stopped!</td></tr>
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On the website, <a href="http://www.parentingchildrenwithhealthissues.com/index.html" target="_blank">Parenting Children With Health Issues</a>, Lisa's discusses Five Essential Keys for Raising Responsible Kids with her co-author Dr. Cline that they discuss in the book.<br />
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<li>Experience</li>
<li>Example</li>
<li>Empathy</li>
<li>Encouragement</li>
<li>Expectations</li>
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I chose to share the video on Encouragement, because I need to practice how to properly encourage my son as he learns to self-infuse. I encourage you to watch all <a href="http://www.parentingchildrenwithhealthissues.com/FiveEsVideoClips.html" target="_blank">five videos</a>!<br />
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ENCOURAGEMENT: The Essential Es of Raising Responsible Kids</div>
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Foster W. Cline, M.D. and Lisa Greene, BS CCP</div>
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<span style="color: red;">Could you relate to how you talk to your children now?</span>Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-28101016534248794512013-01-10T13:31:00.000-05:002013-01-11T14:59:37.005-05:00What's Wrong With A "Mama's Boy"? - Video Thursday My husband is a proud "Mama's Boy". When we started dating I knew early on that Sunday was his day to spend with his Mom. I accepted that. To be honest with you, it was one of the things that I liked the most. I would rag on him a little bit about it, but it was a sexy thing.<br />
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<tr><td class="tr-caption" style="text-align: center;">Disney World 2011</td></tr>
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With my own sons, I hope they care about me the same way. With both of them having hemophilia, I have experienced some of the most stressful times in my life worried about them. I have learned from their birth to be intuitive to their feelings, so I could identify bleeds. I had to comfort them, when at the same time, hold them down so strangers could stick them with needles. I had to contain my own feelings in order to stick them myself. So, I have been there for them through everything. They have come to depend on me. They are and forever will be "Mama's Boys". At the same time, I know as they get older, I have start putting the responsibility of their care on them such as self-infusion and ordering their own factor.<br />
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Yes, I have worried whether all this special attention would make them "less of a Man" or any of the other negative stigmas that the term "Mama's Boy" have. I found this video of a Mom, Kate Stone Lombardi, that looked into the "Mama's Boy Myth" and did research to confirm that there are benefits to nurturing your son! In her book, <em>"The Mama's Boy Myth</em>", she determined that "close mother-son relationship makes boys stronger and ultimately helps them be better partners and husbands," reported by Susan Donaldson James of ABC Good Morning America.<br />
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<span style="color: red; font-size: small;">Have you worried about being too close to your son and creating a "Mama's Boy"?</span></div>
Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-84420481374375433232013-01-08T16:52:00.002-05:002013-01-08T16:52:52.758-05:00Every "Super Mom" Needs Her Own Theme Music That may sound corny, but it is very true. Just like in the movies when the good guy is fighting the bad guy and he starts to win....the music changes....it's his theme music coming on and we know he has this fight in the bag. I hear music in my head as well when I have to be "Super Mom" and muster up the strength to get things done instead of just crying.<br />
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It's crazy though, I think I've always had theme songs playing in my head, but I was too busy to realize it. When I was married to my first husband and had my daughter my theme song was Karyn White's, "I'm Not Your Super Women". <br />
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That song made me cry every time I heard it....because I felt what she was singing. Needless to say, that marriage ended in divorce after 5 years. I know what your thinking...how was that a <em>good </em>song? The song made me realize I wasn't getting what I needed from the relationship and I deserved to. Now fast forward to my second husband. My theme song is a lot happier..can't really share it since I want to keep this post rated PG-13. <br />
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Just as Karyn White's song made me realize what I needed to do for me, other songs encourage me when I need to muster up my "Super Mom" strength to do what's best for my children. <br />
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I remember one time very clear, when Marques was about 5 years old. He was running around upstairs with his cousins and slipped in the bathroom and hit his head. About time they brought him down to me, he had a huge lump on the back of his head. So I grabbed his factor and him and headed out to the Emergency Room, since he has a history of head bleeds. (Not sure why back then, I didn't treat first then take him) The Emergency Room parking was awful at this hospital. It was such a long walk from parking to the Emergency Room entrance.<br />
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It was cold and late at night (always when they hurt themselves, right!) and he was so heavy, but I had to muster up my "Super Mom" strength to get us through those Emergency Room doors.....so my song would start playing in my head. At the same time, I also thought about my Grandma Janie who carried my father miles to the hospital when he had a bleed (as told by my father). <span style="color: black;">So with that thought and my theme song, "Super Mom" could not be stopped.</span> <br />
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Rocky Theme Music from Part 2 - Posted by graphicaluser on YouTube</div>
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I think I hear this song because I'm orginally from Philadelphia and I loved the Rocky movies growing up...did I just date myself. I just feel so inspired and motivated and like I can accomplish anything. </div>
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Luckily, the MRI was clear and we were able to go home. I wrapped him up and carried him that long cold walk back to the car. Someone must of complained about the journey to the emergency room, because now they do valet parking ...there is still a long walk through the hospital first floor but at least there's a wheelchair and I think you can get an escort if needed.<br />
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Hopefully, you don't think I am too crazy....maybe you have your own theme song? It may not be a song but a thought or bible verse. I believe that you need something to turn your "Super Mom" or "Super Dad" powers on to get through the tough times of having a son with hemophilia or really any ailment. I know once you are on prophy they are few and far between (knocking on wood). <br />
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However, for the new Moms that are experiencing bleeds for the first time, do you have any advise for them to turn on thier "Super Mom" powers?</div>
Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com0tag:blogger.com,1999:blog-3277413268438031752.post-12021122874934298272013-01-03T17:21:00.000-05:002013-02-23T14:19:54.786-05:00Hemophilia: The Royal Disease - Video Thursday I accidentally came upon a story on YouTube about the story of Hemophilia being passed down by the Royal family. I remember when I was younger my Dad would mention this all the time. I have read other stories about this in the Hemophilia information books, but nothing quite as interesting as this YouTube video.<br />
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This video was posted by <a href="http://www.taintedblood.info/index.php" target="_blank">Tainted Blood</a> created by Discovery. It explains the historical effects of hemophilia on the Royal Family and how it actually changed the course of Royal history. I found it very interesting to know how the genetic passing of hemophilia may have changed history (.....)<br />
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I was also able to relate to Princess Alexandria's guilt (starting point 12:05) and trying to find a way to comfort her son during bleeding episodes. I know any Mother who has sat in the hospital with their son, feeling hopeless, waiting for the factor to work can relate to her story. We are just lucky enough to now have factor to stop bleeds and make the pain go away. <br />
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So, if you have 30 or so minutes watch this video. The second part is about Queen Victoria also passing Porphyria, another hereditary disease.<br />
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<span style="color: red;">Let me know what you think after watching? Have you seen this video before?</span><br />
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<span style="color: red;"> </span><span style="color: black;">Also, by watching this video it gave me an idea to share a video every Thursday. Somehow, the video will relate to dealing with hemophilia in your family so check back next Thursday or email me a video you would like me to see.</span><br />
<span style="color: red;"></span><br />Lovee' Johnson-Lundyhttp://www.blogger.com/profile/11890769689684570530noreply@blogger.com7