tag:blogger.com,1999:blog-76860133399684263442024-03-05T01:07:28.272-05:00Eyes on Elena: her CF Updatemotherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.comBlogger137125tag:blogger.com,1999:blog-7686013339968426344.post-19229085064169406002016-08-16T07:55:00.003-04:002016-08-16T08:11:58.698-04:00First Day of School...8 Years Worth!<div class="separator" style="clear: both; text-align: center;">
Over the 8 years we have been homeschooling </div>
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(has it seriously already been eight years?), </div>
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we have watched each child grow, learn, and love. </div>
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Our school curriculum and classroom has changed as often as the weather. </div>
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Homeschooling is part of our everyday life (yes, even in the summer and on the weekend). </div>
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Cystic Fibrosis is intertwined through it all, but </div>
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as you can see from these videos, CF doesn't steal the joy! </div>
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Here is video proof:</div>
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2009</div>
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2010</div>
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2011</div>
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(no video this year...but look at these tiny people!)</div>
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2012</div>
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2013</div>
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2014</div>
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2015</div>
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2016</div>
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2016- Student's Choice</div>
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motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-66041272894010384712016-07-19T22:06:00.000-04:002016-10-11T23:29:42.964-04:00No vacation for CFOh Cystic Fibrosis...you won't let us forget about you, will you?<br>
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Summer is here and we are reminded of how quickly time flies when you are having fun! Yet, we are also reminded that Cystic Fibrosis does not take a va-cay...like...ever.<br>
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How do you forget about Cystic Fibrosis and the lurking fear of how it can bring drastic changes to your kid's health at a moments notice? My answer; you don't ever forget. How can you forget that? Instead, choose to fill your days with silliness that may involve rolling down the car windows and screaming Justin Timberlake's latest catchy tune. Create quiet moments together where you snuggle to read a book, watch a movie, color, or chat about your favorite moment you shared that day. You keep everyone busy with field trips. Did you know that grocery shopping counts as a field trip? It can be more like trying to herd cats, but if you go to the Dekalb Farmer's Market it is a field trip for EVERYONE! My favorite distraction in life with Cystic Fibrosis is the search for ways to keep daily health care fun and exciting so compliance is at an all time high every moment of everyday...even summer days.<br>
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Our latest enhancement to Elena's daily routine has been fun for ALL OF US! It involves her enzymes. Her enzyme pills must be taken anytime she eats to help replace the pancreatic enzymes that can not escape from her very sticky coated pancreas. She takes 15 plus enzymes a day (not included her 15 plus various other pills). Where do we store all these? Pill bottles, you say? That wouldn't be much fun, but THIS is!<br>
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Elena had a CF doc appointment today. We entered the office and we were celebrated by all of the staff. They give us kuddos for our parenting, cheers for each of our unique kiddos, and they put their ever-lovin'-giant-effort into the care of our child, Elena. (And they also see Ev and Em for breathing issues and asthma). They are family! On top of that, they keep us entertained with their humor and joy of living this life. These people are amazing, and did I mention that Dr. Larry has dyed his hair teal? <br>
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Elena's lung function went down 1% to 81%. Funny how time changes you. That number use to make us sick to our stomach with fear. Now we are happy it is no longer in the 70's. She has had a cough and congestion that antibiotics won't get rid of. She will try another antibiotic along with the one she is currently taking. Elena will start back on Orkambi tonight after a several month break due to the effect it had on her kidneys. She will take a drug to help counteract that kidney problem. She will add more to her already full plate of meds and treatments. I know... she IS a rockstar. <br>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEherZQKD5OnSpZ2sT1QAoejgIOdsLqxDLu9RkYW9jwuUq21xMVIM85JZpEmMCUlXLCMaa8UzXcKwdv2fNASZ88wrwan2R8uBnuwmv77gcRndj8WyxNPlwbppIbtcmpgEP5PJZhdWYkgVw/s1600/IMG_9309.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEherZQKD5OnSpZ2sT1QAoejgIOdsLqxDLu9RkYW9jwuUq21xMVIM85JZpEmMCUlXLCMaa8UzXcKwdv2fNASZ88wrwan2R8uBnuwmv77gcRndj8WyxNPlwbppIbtcmpgEP5PJZhdWYkgVw/s400/IMG_9309.JPG" width="400"></a></div>
Yes, Cystic Fibrosis. We know you are always there. Reminders of how much you suck is not necessary, thank you very much. So, if you wouldn't mind giving my kid a break so we can continue to celebrate our crazy, exciting, Harry Potter themed camp creating, pool swimming, friend playing, Pokemon chasing, backyard shenanigan making, and overall pretty freakin' amazing summer...we would greatly appreciate it.<br>
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Sincerely,<br>
Me, the Mother of E's who doesn't have time for CF bullying my kid<br>
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<br>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-65937184391066316722016-05-21T16:50:00.001-04:002016-05-21T17:04:58.369-04:00Here we go, Here we go, Here we go now!<div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Here we go...</span></div><div class="separator" style="clear: both;">W<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">aking up early so treatments can be done on time to get us out the door to set up our team tent.</span></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8JpLX-_XYXiwdGtw2rPDPWHg2BVZeLiKy0EMJUlE61okh4SkLTzHBJEAxTP42JumIzJFE7_8c2blvHFOl9-W-_nxvIrknq06Qrxn6E8lXqYEfBzcH8QR4VCSfvC1L3lt044ZNHA_xEg/s640/blogger-image--789753413.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8JpLX-_XYXiwdGtw2rPDPWHg2BVZeLiKy0EMJUlE61okh4SkLTzHBJEAxTP42JumIzJFE7_8c2blvHFOl9-W-_nxvIrknq06Qrxn6E8lXqYEfBzcH8QR4VCSfvC1L3lt044ZNHA_xEg/s640/blogger-image--789753413.jpg"></a></div><br></div><div class="separator" style="clear: both;">Here we go...</div><div class="separator" style="clear: both;">Onward with smiles and silliness as we tackle the rough patches in life with CF and just life in general</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoij0ygMPi8watawDCQtjhNIwtv8h-fynOJ7_CPrtJSYddoLw6pmaF7s5BDJWm-7vwf77YfiaV3GaBPganr5zAMMNBgoGGFiTBYR7UdTJ4HVmXt9uPjlz3iSe7EWk641oS0ZMd8urkeA/s640/blogger-image-510635376.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoij0ygMPi8watawDCQtjhNIwtv8h-fynOJ7_CPrtJSYddoLw6pmaF7s5BDJWm-7vwf77YfiaV3GaBPganr5zAMMNBgoGGFiTBYR7UdTJ4HVmXt9uPjlz3iSe7EWk641oS0ZMd8urkeA/s640/blogger-image-510635376.jpg"></a></div></div><div class="separator" style="clear: both;"><br></div>Here we go...</div><div class="separator" style="clear: both;">Spreading love and sharing friendship even during the darkest of times</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWI4zTuBZQVo90504pAiTX2VQUNZ7XlPTvM2E3UZobsQWS5jrZjO2rnmFxPtqG3H_FHxxO1jec54z7pJ7FQngPRHFZEHwwktgIVqmj2fOP2XdkrtF4255ugq1avr7o-27leUlTbfCg6A/s640/blogger-image--296644743.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWI4zTuBZQVo90504pAiTX2VQUNZ7XlPTvM2E3UZobsQWS5jrZjO2rnmFxPtqG3H_FHxxO1jec54z7pJ7FQngPRHFZEHwwktgIVqmj2fOP2XdkrtF4255ugq1avr7o-27leUlTbfCg6A/s640/blogger-image--296644743.jpg"></a></div></div><br></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Here we go...</span></div><div class="separator" style="clear: both;">Towards more deeply loving and wonderful friendships</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM8eZRnm42rybDrG0XCispmcydMsi4H9nl68h6EQiFK8_Lj7JWEL8CP3kT3UnpPE_hkGmkQIYJUDkuCuXgcUWHfyHekV2T5r7Yd9ULwR1uHxi0Mj2lsPotU5-fvoZ8bDmUhos0DZwf0Q/s640/blogger-image-491971701.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM8eZRnm42rybDrG0XCispmcydMsi4H9nl68h6EQiFK8_Lj7JWEL8CP3kT3UnpPE_hkGmkQIYJUDkuCuXgcUWHfyHekV2T5r7Yd9ULwR1uHxi0Mj2lsPotU5-fvoZ8bDmUhos0DZwf0Q/s640/blogger-image-491971701.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga-e5BTzp7KvWzOG3EfaumcRiCBmKQWjaOA_oZaTJKWE2gezxcSYXMEzvMHaxYfslx1sh4dMzfnwhPU3cB87hWrWVtPdLRud9O0XcxhjF1Yew2ZKot7QMX96SYBigH0WdWtfuMzMa76A/s640/blogger-image-972433625.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga-e5BTzp7KvWzOG3EfaumcRiCBmKQWjaOA_oZaTJKWE2gezxcSYXMEzvMHaxYfslx1sh4dMzfnwhPU3cB87hWrWVtPdLRud9O0XcxhjF1Yew2ZKot7QMX96SYBigH0WdWtfuMzMa76A/s640/blogger-image-972433625.jpg"></a></div><br></div><div class="separator" style="clear: both;">Here we go...</div><div class="separator" style="clear: both;">With support and love by our side near and far</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijctJ7DXL7yVUbSYYGrD3PYM8LJiyEpSqBSpmN2pV7HHsxdTPmT6BVn2KSDSlm30UrF8GD-V8tiOdXbQKlWjvYrSpR3dKaIO0iDqHpMrt2vNA1dUKgla5HXwpNeoC1SWwf0aV2VHhTgg/s640/blogger-image-2119975317.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijctJ7DXL7yVUbSYYGrD3PYM8LJiyEpSqBSpmN2pV7HHsxdTPmT6BVn2KSDSlm30UrF8GD-V8tiOdXbQKlWjvYrSpR3dKaIO0iDqHpMrt2vNA1dUKgla5HXwpNeoC1SWwf0aV2VHhTgg/s640/blogger-image-2119975317.jpg"></a></div><br></div><div class="separator" style="clear: both;">Here we go...</div><div class="separator" style="clear: both;">Working and fighting with many other people in our growing CF family.</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibYQ_zkSCwpsy1A3vD_PD9en0sf08aVhTi1eFVEUpLFDdBziFFtyNSmLYuIJVlCnuIv9ImBXwyKh6lRLjcUsmNSrRq9Oe4GSmisxu_MTK-hBy2Iw-7zuW4avAXvxs4XN_b3K4uxsPFNQ/s640/blogger-image--102113454.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibYQ_zkSCwpsy1A3vD_PD9en0sf08aVhTi1eFVEUpLFDdBziFFtyNSmLYuIJVlCnuIv9ImBXwyKh6lRLjcUsmNSrRq9Oe4GSmisxu_MTK-hBy2Iw-7zuW4avAXvxs4XN_b3K4uxsPFNQ/s640/blogger-image--102113454.jpg"></a></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Here we go...</div><div class="separator" style="clear: both;">with hope and love in our hearts</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmofdipmGNyclM2meZqkE1Wjm-I3SGYvtj6sgqUAHOkDb3SHAmzZGYrg0zGOBv6lHcd6c00ePlmTwMkZzxv40Ig53h_PI7K__ENCxUgbc4NLgRiAwa6K9XORGiF4N6NcQZDXa9I2fJOA/s640/blogger-image--412297507.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmofdipmGNyclM2meZqkE1Wjm-I3SGYvtj6sgqUAHOkDb3SHAmzZGYrg0zGOBv6lHcd6c00ePlmTwMkZzxv40Ig53h_PI7K__ENCxUgbc4NLgRiAwa6K9XORGiF4N6NcQZDXa9I2fJOA/s640/blogger-image--412297507.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Here we go...</span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Towards a cure</span></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIp_-jt3sbBLv2F9Iow_6Ot6pg4Bs-FexpsjUFi8IJOS0Ek-RnusTEHamK910gMRM5hBJ9s115mL5PAb1HQHzfw3gzaN7dcrCJrtLk-uNw9N8zmktbV8SnZvKvXHQPUDagWXqOfGvEOQ/s640/blogger-image-635674671.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIp_-jt3sbBLv2F9Iow_6Ot6pg4Bs-FexpsjUFi8IJOS0Ek-RnusTEHamK910gMRM5hBJ9s115mL5PAb1HQHzfw3gzaN7dcrCJrtLk-uNw9N8zmktbV8SnZvKvXHQPUDagWXqOfGvEOQ/s640/blogger-image-635674671.jpg"></font></a></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Here we go...</span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Towards more tomorrow's</span></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiv5ADmZuhTeREc6Y-W8GUzizxirFuu1uE5NlDH3clgjXcZqYAvsvyFw-OmSMdutMCiI9UaDblNZnKdIHdjBu2zsRqwmvFHVVHe6ZpRvbDUOjIZ6cWbbDcpJI2ZZwdbidLNVvcUdbysg/s640/blogger-image-1627957088.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiv5ADmZuhTeREc6Y-W8GUzizxirFuu1uE5NlDH3clgjXcZqYAvsvyFw-OmSMdutMCiI9UaDblNZnKdIHdjBu2zsRqwmvFHVVHe6ZpRvbDUOjIZ6cWbbDcpJI2ZZwdbidLNVvcUdbysg/s640/blogger-image-1627957088.jpg"></a></div><br></div><div class="separator" style="clear: both;">Here we go now. Check it out.</div><div><br></div></div>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-60502716076561498582016-04-03T10:11:00.000-04:002016-05-03T17:20:24.888-04:00Soon I'll be Thirty Years Old<div style="line-height: 19.32px; margin-bottom: 6px;">
<span style="background-color: #b6d7a8; font-family: "georgia" , "times new roman" , serif; font-size: large;">Here is Elena's latest fundraising project where she re-wrote the words to the "7 Years" song and made her new version titled "Soon I'll be Thirty Years Old". This is a song of HOPE for our CF friends and family! This young lady had me in crying, laughing, and completely in awe as I watched her video. My daughter, Elena, makes me strive to be the best I can every moment of everyday!!!:)</span></div>
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<span style="background-color: #b6d7a8; font-family: "georgia" , "times new roman" , serif; font-size: large;"><iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/YFhdAiXMtDI/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/YFhdAiXMtDI?feature=player_embedded" width="320"></iframe></span></div>
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<span style="background-color: #b6d7a8; font-family: "georgia" , "times new roman" , serif; font-size: large; line-height: 19.32px;">Donations can be made at:</span></div>
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<a data-lynx-uri="https://l.facebook.com/?u=https%3A%2F%2Fwww.flipcause.com%2Fsecure%2Fcause_pdetails%2FNTcwMQ%3D%3D&e=ATNSBeoeAquBYfc9GwY7uZIS0k96SGPVHuS_J7XkN1NdSvs55AOgtwbCI4iW4Q" href="https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==" style="cursor: pointer; line-height: 19.32px;" target="_blank"><span style="background-color: #b6d7a8; color: black; font-family: "georgia" , "times new roman" , serif; font-size: large;">https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==</span></a></div>
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<span style="background-color: #b6d7a8; font-family: "georgia" , "times new roman" , serif; font-size: large; line-height: 19.32px;">and note that you are making a donation in honor of Rosebuds-Elena.</span></div>
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<span style="background-color: #b6d7a8; font-family: "georgia" , "times new roman" , serif; font-size: large; line-height: 19.32px;">OR, you can be a part of booster tee fundraiser campaign!</span></div>
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<span style="background-color: #b6d7a8; font-family: "georgia" , "times new roman" , serif; font-size: large; line-height: 19.32px;"><br /></span></div>
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<span style="background-color: #b6d7a8; font-family: "georgia" , "times new roman" , serif; font-size: large; line-height: 19.32px;">Visit our site here:</span></div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large; line-height: 19.32px;"><a href="https://www.booster.com/order-of-the-owl-wizardry-camp-helps-kids-with-cystic-fibrosis" style="background-color: #b6d7a8;">https://www.booster.com/order-of-the-owl-wizardry-camp-helps-kids-with-cystic-fibrosis</a></span><br />
<span style="background-color: #b6d7a8; font-family: "georgia" , "times new roman" , serif; font-size: large; line-height: 19.32px;">The tee design is magical and the camp slogan on the back is fantastical. Get one and get your wizard swag on while also helping us cast a spell to make CF stand for Cure Found!</span><br />
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<span style="background-color: #b6d7a8; color: #141823; font-family: "georgia" , "times new roman" , serif; font-size: large; line-height: 19.32px;">As always, we are completely in awe of the amazing love and support we continue to receive as we fight Cystic Fibrosis as a family!!! Thank you!</span></div>
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motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-42793796630254432872016-03-29T10:11:00.001-04:002016-04-09T06:41:43.640-04:00Thank You!<div>So proud of Elena and her hard work to keep her team of Rosebuds a successful CF fundraising group. She works hard to spread the word and give hope to our CF community. I hope to be like her when I grow up. :) </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYy5_C7YHlbkHaqzNoH5ZT5eS8cfwVK5_neNFLFaJorOBo__ot7SewQqfJWyeV1T3EDDL0ORMgP47ZIlwfBc5sBE9sQIHh0J11HT2fUdpW1fStbtKlPER34-b5KmuAnyEQZqQNEThHbg/s640/blogger-image--480671999.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYy5_C7YHlbkHaqzNoH5ZT5eS8cfwVK5_neNFLFaJorOBo__ot7SewQqfJWyeV1T3EDDL0ORMgP47ZIlwfBc5sBE9sQIHh0J11HT2fUdpW1fStbtKlPER34-b5KmuAnyEQZqQNEThHbg/s640/blogger-image--480671999.jpg"></a></div><br></div><div>THANK YOU to all our CF Superhero Supporters, Runners, Volunteers, Fundraisers, & Friends! We raised $4,440 so far since our race on March 20th! Please consider helping us reach our goal of $6,500 by donating here: https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==</div><div>These little Rosebuds send you a high five and a BIG THANK YOU!</div>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-18623204452827155792016-03-20T11:02:00.001-04:002016-03-20T11:02:47.706-04:00Rosebuds Success with Smiles!If only we could all look this happy when exercising, right?! Our Rosebuds raised $600 more dollars today to go towards our fundraising efforts to stomp out Cystic Fibrosis one mile at a time. Proud of our CF Superheroes!! <div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpJHv0Phk4Qt2cxHgXZfD6gjCALZQ0ncC6_Dv9hBE1RiNYdMz7WS_5rHuut16kVepV1fCLxb6HuGOS-uKZid-B6azHbJLw4i3gbjhKIjRXCdiGSQ9icca0l9h06vR0kS_6XkY7IDQCPg/s640/blogger-image-493749083.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpJHv0Phk4Qt2cxHgXZfD6gjCALZQ0ncC6_Dv9hBE1RiNYdMz7WS_5rHuut16kVepV1fCLxb6HuGOS-uKZid-B6azHbJLw4i3gbjhKIjRXCdiGSQ9icca0l9h06vR0kS_6XkY7IDQCPg/s640/blogger-image-493749083.jpg"></a></div><div class="separator" style="clear: both;">Seriously, who smiles so big you can see their dimples while running? Apparently this Irish cutie!</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIVRgimI1hF_pECbGConf2imbybrxHWFBw2S4DP9ib1GdZvmU3KTqjcVRMsHu3h3N7Oj3TfvLaO6hNbTzh-e8FlgbHiZUytOScYZ17Nhe-VeQQRUDO9PQ4oKfZl614VJvxunhRqdQKOA/s640/blogger-image--1351644258.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIVRgimI1hF_pECbGConf2imbybrxHWFBw2S4DP9ib1GdZvmU3KTqjcVRMsHu3h3N7Oj3TfvLaO6hNbTzh-e8FlgbHiZUytOScYZ17Nhe-VeQQRUDO9PQ4oKfZl614VJvxunhRqdQKOA/s640/blogger-image--1351644258.jpg"></a></div><div class="separator" style="clear: both;">Ev winning at life and this race for his age group! He cried when the mascot crossed the finish line before him. He didn't realize he still won... Competitive kid? Nah.</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4rgKKoPZlwoxiw7JAABNCc2LpIb9XStK240b7SDb2k_QX4CNSy8GmhCyMWyh3BvXYqvVXfDDa-1ktCGTZH7mVh3acd12TbB7jyX37Q1Z56nAEqR2PHHJKtb9D5oeZyAKwrs6V8CuEwg/s640/blogger-image--1374175900.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4rgKKoPZlwoxiw7JAABNCc2LpIb9XStK240b7SDb2k_QX4CNSy8GmhCyMWyh3BvXYqvVXfDDa-1ktCGTZH7mVh3acd12TbB7jyX37Q1Z56nAEqR2PHHJKtb9D5oeZyAKwrs6V8CuEwg/s640/blogger-image--1374175900.jpg"></a></div></div>The big E's completed the one mile race with giant smiles as well!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Thank you to all the runners (Johnston family and friends) as well as our wonderful cheerers that bundled up to join our cause! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">What a wonderful day to raise money for a fabulous cause on this first day of Spring! </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Want to help our donation dollars grow? You can place a donation here:</span></div><div class="separator" style="clear: both;"><a href="https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==</a></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Be sure to note that it is for Rosebuds. Thank you for your support, love, thoughts, donations, help, and friendship! Together we can fight for our friends and family with Cystic Fibrosis.</font></div></div><br></div><br></div>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-43870138888963131692016-03-09T17:30:00.001-05:002016-03-09T22:37:32.527-05:0012 Years<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Elena said I blew her mind today when I had her listen, I mean REALLY listen, to the lyrics of "Let it Go" while we applied it to different situations in our life. She said, "Wow, Mom...WOOOOW!"</span><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">For the past 12 years it was difficult for us to drive to and away from CF appointments without anxiety. Finally, we are at a place where we have such peace about what comes our way in life and Elena handles all her CF junk</span><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> with so much grace. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div>The Goodrow Gang has been practicing finding happiness in all areas of life, even the ugly parts. Life is too short to dwell on the icky, right? Today while driving away from the office of Dr. Awesome (Elena's superb CF Doc, Larry McKean), we were smiling, soaking up the sun rays, and singing "Let it Go" at the top of our lungs! </div><div><br></div><div>It was the same old CF story at the appointment. We will await sputum culture results to see what is bothering her lungs this week besides the weather. Meanwhile, <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Elena's lung function is up from the mid 70's and is back around 82%. That is a nice surprise! </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> CF; the continuous unsolved mystery! </span></div><div><br></div><div>No worries here. We know we are doing everything we can to fight CF as a family. Until the results are in, we will continue to smile, soak up the sun, enjoy the ride, and let it all go.</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh52FDqSqazmE9orBSOo4HB8JZmvrwKtKFhJf-dpWKmlGE5nrWfMwd44dxS-unuNDz8pfm8IX1o-WMaIREtBxMm1u-HyiVNAIH2KGFt4Eow6U7orEPAQ_mi4MhYi4adte0oJDa_YBDocg/s640/blogger-image-1715053010.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh52FDqSqazmE9orBSOo4HB8JZmvrwKtKFhJf-dpWKmlGE5nrWfMwd44dxS-unuNDz8pfm8IX1o-WMaIREtBxMm1u-HyiVNAIH2KGFt4Eow6U7orEPAQ_mi4MhYi4adte0oJDa_YBDocg/s640/blogger-image-1715053010.jpg"></a></div> </div><div>Want to enjoy the ride with us? Consider joining our running team on March 20th or donate towards our fundraising efforts.</div><div><br></div><div>Learn more at www.milesforcf.org/rosebuds </div></div>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-72749727475635743992016-02-26T18:50:00.001-05:002016-02-26T19:55:25.428-05:00Rosebuds back at it!<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVtq7J6o9-8AcRZb8_OxULPBavMuIAYWw5kZcCK3w4nNAZEcgYnZYDK85vz7XrUfZ9Lx15LM3H35pbro98L08vpwFznYpsca5925CIgXNe32uYhP6os-RqWy-IX_hI8M4-H3YyM7-wRA/s640/blogger-image--485721650.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVtq7J6o9-8AcRZb8_OxULPBavMuIAYWw5kZcCK3w4nNAZEcgYnZYDK85vz7XrUfZ9Lx15LM3H35pbro98L08vpwFznYpsca5925CIgXNe32uYhP6os-RqWy-IX_hI8M4-H3YyM7-wRA/s640/blogger-image--485721650.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgKfmNz-1q8p1aE4uv0XGmTSUqoPYCpHgSn-I6318jFIx86q5iUSvgzjUs0BIJp4tT_ffU6-lrfL3F77fUMGy1l5mBz47CWihKqnx86mRy8ewhIVagp5RUOCE0Xw8ma9wibTZfq3C-Gg/s640/blogger-image-1077329418.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJs5aiW6J4SlSbjmBRmoGDrffWYoAUnV_SxzWH-sU5OCh7uC5nmCkO8epA9LrTQ7Q7rP-EZUr0SxF7LPAjE2Lc4q1rEJ44gTCpiOoInVIbP6ySOk58lRBaExB9MKHRPy3CyBCgFRVBKw/s640/blogger-image--1533640975.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJs5aiW6J4SlSbjmBRmoGDrffWYoAUnV_SxzWH-sU5OCh7uC5nmCkO8epA9LrTQ7Q7rP-EZUr0SxF7LPAjE2Lc4q1rEJ44gTCpiOoInVIbP6ySOk58lRBaExB9MKHRPy3CyBCgFRVBKw/s640/blogger-image--1533640975.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">If you have kids that are not mermaids and have extra energy to expend.... We've got the event for you and it's FREEEEE!!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So here's the scoop:</div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><strong>Atlanta Track Club's Fun Run and Dash<br>Be Healthy Georgia Festival in conjuction with the Publix Georgia Marathon and Half-Marathon</strong><br><strong>March 20, 2016</strong><br><br>Kids 14 and under can run or walk with the Rosebuds team in the Be Healthy Georgia One Mile or Dash that is part of the Publix Georgia Marathon and Half-Marathon in Centennial Park in Atlanta. NOTE: THERE WILL BE NO 5K THIS YEAR!<br><br>Make it a family affair! The adventurous ones in your family can run with Team 65ROSES in the Marathon or Half-Marathon while the kids enjoy their own race! Miles for Cystic Fibrosis will have a tent and finish line party in Centennial Park after the race for a place to gather and celebrate your accomplishment! Everybody can be a CF Superhero!<br><br>Kids will get to run across the same finish line as the marathoners and half-marathoners, and all participants will get a SWEET finisher medal.<br><br><strong>Date:</strong> Sunday, March 20<br><strong>Time:</strong> 8 a.m. for One Mile Fun Run; 8:30 a.m. for 50 Meter Dash<br> Be sure to arrive early!<br><strong>Location:</strong> Centennial Olympic Park - Amphitheatre Park Concert Stage<br> (Marietta St & Centennial Olympic Pak Dr. NW, Atlanta, GA)<br><strong>Distance:</strong> Ages 7-14 one mile<br> Ages 6 and under 50 meter dash<br><strong>Cost:</strong> FREE!!!!</span></div><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgKfmNz-1q8p1aE4uv0XGmTSUqoPYCpHgSn-I6318jFIx86q5iUSvgzjUs0BIJp4tT_ffU6-lrfL3F77fUMGy1l5mBz47CWihKqnx86mRy8ewhIVagp5RUOCE0Xw8ma9wibTZfq3C-Gg/s640/blogger-image-1077329418.jpg"></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Did you know that our team can earn a scholarship to be given towards our fundraising cause for having the most participants?!?!?! We are currently in fifth place! Invite your friends, your neighbors, your family and help us get first place!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Register here: http://www.atlantatrackclub.org/2016-be-healthy</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Be sure to select team rosebuds.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Help our team win up to $1500 extra dollars for our cause of Kids helping kids with Cystic Fibrosis!!</div><div class="separator" style="clear: both;"><br></div><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVtq7J6o9-8AcRZb8_OxULPBavMuIAYWw5kZcCK3w4nNAZEcgYnZYDK85vz7XrUfZ9Lx15LM3H35pbro98L08vpwFznYpsca5925CIgXNe32uYhP6os-RqWy-IX_hI8M4-H3YyM7-wRA/s640/blogger-image--485721650.jpg"></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Join Elena and her family and friends as we chase CF out of the park this March 20th. Speaking of Elena...</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">How's Elena? She's a long, lean, yoga loving machine with a zeal for acting and a great love of her amazing and supportive family and friends. P.S. She plans to kick CF's booty. Won't you join us in this cf butt kickin' fun and register or support the cause by making donations here: <a href="https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">https://www.flipcause.com/secure/cause_pdetails/NTcwMQ==</a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8R2gy4yHYfe3zJuxk9obAC9GLmIrLUiuzp5ynw77jAhFxxfNWLD-hXSdig4Y-hT5Ke3bnXYttQFftcw-wQfTrLXlFPq_u2xxTHFq1xmzRhBNdM2tsHxH3qcw7piHhXU8SUO6KLViacQ/s640/blogger-image-317483867.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8R2gy4yHYfe3zJuxk9obAC9GLmIrLUiuzp5ynw77jAhFxxfNWLD-hXSdig4Y-hT5Ke3bnXYttQFftcw-wQfTrLXlFPq_u2xxTHFq1xmzRhBNdM2tsHxH3qcw7piHhXU8SUO6KLViacQ/s640/blogger-image-317483867.jpg"></a></div> Life is short, let's spend it spreading good and love. Thank you for helping us share the love:):)</div><br></div>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-32526986641028035022015-11-07T12:33:00.000-05:002015-11-07T12:33:32.950-05:00Organ Donor: Be oneWe have a friend that is fighting for her life right now as she awaits a new pair of lungs. This family is so very dear to us. Their support during our own family sadness has been huge. Cystic Fibrosis is being very beastly. Hope is plentiful among this family and her many friends. <br />
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Last night I let Elena know what was going on with our friend, Joy. She said she knew that things were not well. We talked about lung transplants and what it means to be an organ donor. Elena asked, "Why wouldn't everyone be an organ donor?" Great question. Many people just do not know they can be. Then she was quiet for a moment followed by her saying "No one would want my CF lungs." I said, "No, but they could use other things like your eyes, your heart..." which she said, "I have pretty eyes and an awesome heart." YES, yes she does.<br />
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Cystic Fibrosis, oh what a beast you are. You have taken so many people on roller coaster rides that were not the fun kind. You have robbed people of loved ones. You make people fearful for their future. You take precious time from people each day as they work hard to defeat you. <br />
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Nope. Not in my house and on my watch. We will take this roller coaster ride, we will embrace each moment we are given, we will not allow fear of the unknown, and we will never stop fighting to defeat you for our daughter Elena and her many friends with Cystic Fibrosis. Life is short. There is NO time to waste being angry, sad, lost, mad, scared, disappointed, or confused. We are so thankful for the people in our life that recognize this and share this mentality.<br />
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Get the word out! Be an organ donor. Elena is asking you on behalf of all those who may be in need of more tomorrows.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxp5ftKRcj5JOY3uS9bkEJ-8lNRlRSIFZxfF2bWg0znku2qCklElZ7fEgqxXdLqd6pTRoCVyMSDUMdPQYtaxmzlY2WMowbC7PWkSWvMuwmK9aVS6Bev26gdIPKVOAUEfSU2hrofB-bww/s1600/2015-10-26+09.04.32.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxp5ftKRcj5JOY3uS9bkEJ-8lNRlRSIFZxfF2bWg0znku2qCklElZ7fEgqxXdLqd6pTRoCVyMSDUMdPQYtaxmzlY2WMowbC7PWkSWvMuwmK9aVS6Bev26gdIPKVOAUEfSU2hrofB-bww/s320/2015-10-26+09.04.32.jpg" width="320" /></a></div>
<br />motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-12261080044894481152015-09-07T16:49:00.001-04:002015-09-07T17:06:37.208-04:00Sizzlin' CF to a stand still<div class="separator" style="clear: both; text-align: center;">
The Labor Day Big Peach Sizzler was today. This race is organized by and benefits the Miles for Cystic Fibrosis organization. The first year for this group was 2007. The Goodrow Gang was there and there we have remained. We love this group and all it stands for: Raising awareness of Cystic Fibrosis, collecting donations for vital research through the Cystic Fibrosis Foundation, and lending a helping hand to those in the CF community with financial needs through the Reaching Out Foundation ALL while promoting a healthy and active lifestyle.</div>
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This year we wanted to remind the Big Peach Sizzler 10k runners to think: #whyirunmiles4cf</div>
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The idea started 5 years ago when I saw a CF dietician running with her patient's names written on her arm to inspire her as she ran. Her idea would grow into my finding 13 inspirations with Cystic Fibrosis so I could dedicate each mile of my half marathons to one of my CF friends. The first mile is always the first person I met with CF following Elena's diagnosis (David Adkins...my mile 1 every time!) The last mile is always my Elena. She waits for me at the end of the race and I hug her before I finish that last .1 mile of the half. My CF family has grown and as many of you may know, it takes a village to support our CF families. </div>
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The Sizzler race is 6.1 miles. </div>
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So we have 6 fabulous CF BIG face signs that were held high at each mile marker. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieTzK1aYnf9kkpeVeAsvMTifcYgjL25gKYYIe62rUEjft_CcMBl-XwjnNRyLUHFERwIpjszLiGEhG0MYzu38v-Gmc6qrr1z7kH1po5EDTj0KVCLcKPtThCsVAuiVoblqOX6zxzQ9qrMg/s1600/2015-08-31+15.11.03.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieTzK1aYnf9kkpeVeAsvMTifcYgjL25gKYYIe62rUEjft_CcMBl-XwjnNRyLUHFERwIpjszLiGEhG0MYzu38v-Gmc6qrr1z7kH1po5EDTj0KVCLcKPtThCsVAuiVoblqOX6zxzQ9qrMg/s320/2015-08-31+15.11.03.jpg" width="320" /></a></div>
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The runners enjoyed the noise, the costumes, the music, and the reminder of </div>
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#whyirunmiles4cf</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizNcr5pQca8Ux9BMdTayc0MLhGxoLzxTwirigL7TAG3yAY5NruToRQcr8k2z6C7jifXxvbbU9M18Nrt1UerxQ-Ww_0Nq4ghquLtYp8SGZZjDvUTAWUX4GthBKPJsMRZKm-jIYiY_mzcA/s1600/2015-09-07+07.00.44.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizNcr5pQca8Ux9BMdTayc0MLhGxoLzxTwirigL7TAG3yAY5NruToRQcr8k2z6C7jifXxvbbU9M18Nrt1UerxQ-Ww_0Nq4ghquLtYp8SGZZjDvUTAWUX4GthBKPJsMRZKm-jIYiY_mzcA/s320/2015-09-07+07.00.44.jpg" width="320" /></a></div>
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Our mile marker was a muggle free zone. We represented each house of Hogwarts.</div>
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Here you have Hufflepuff.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAyKXZOBNqXamp75FhzJlrErKquuOJTdR5Tz51_uLdHNuw_beqm5vOjhtm0TpEXfCBItzkQRm4zeZMN2_cVMI9TKiGtSXW7lJCfRZJQV5lhY0nLlH5MMQU8ULJ2KjvNjzt92pnnsvqfA/s1600/2015-09-07+07.09.26.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAyKXZOBNqXamp75FhzJlrErKquuOJTdR5Tz51_uLdHNuw_beqm5vOjhtm0TpEXfCBItzkQRm4zeZMN2_cVMI9TKiGtSXW7lJCfRZJQV5lhY0nLlH5MMQU8ULJ2KjvNjzt92pnnsvqfA/s320/2015-09-07+07.09.26.jpg" width="240" /></a></div>
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Ravenclaw</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVLn7odjSYPahS0vlV37g53-TKmFEItJ08Z-ZzvlvmTn1P07DGVqKSnFg-pdn-mJv2lM1AEy_7p6nDNC0GYo4OEkaC1WbL86upPcV39BHvtNBbq4_TBPKyw5qnN42MzGlE9XNWQd6eVw/s1600/2015-09-07+07.09.41.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVLn7odjSYPahS0vlV37g53-TKmFEItJ08Z-ZzvlvmTn1P07DGVqKSnFg-pdn-mJv2lM1AEy_7p6nDNC0GYo4OEkaC1WbL86upPcV39BHvtNBbq4_TBPKyw5qnN42MzGlE9XNWQd6eVw/s320/2015-09-07+07.09.41.jpg" width="240" /></a></div>
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Slytherin</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4xgokL2I9L2s6aRt3o-1MYfJ-rsXUsvzGSsz14sv_D9FkJgWhb7iq7MbmJIK5QO1xBGvAjBQuqOZUs_DvJiMQAILYQ4PSXwBewcgQ9DzZmBwUTyuKetkNVo_GB4ve8DhbgQt4ObX2jw/s1600/2015-09-07+07.10.19.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4xgokL2I9L2s6aRt3o-1MYfJ-rsXUsvzGSsz14sv_D9FkJgWhb7iq7MbmJIK5QO1xBGvAjBQuqOZUs_DvJiMQAILYQ4PSXwBewcgQ9DzZmBwUTyuKetkNVo_GB4ve8DhbgQt4ObX2jw/s320/2015-09-07+07.10.19.jpg" width="240" /></a></div>
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Gryffindor</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX17kLHOEc95RalIWM26ITgVODne8pRcUXmbre0AQENefJCaporBS_oEqZqrWr3p9J0y_-p90q_y8wZG-OuhdUuBLYlmjnYsSDcKDzn41YT2tPR_Bt0ozomoa8tsUtthffIugrZ0UNmQ/s1600/2015-09-07+07.11.14.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX17kLHOEc95RalIWM26ITgVODne8pRcUXmbre0AQENefJCaporBS_oEqZqrWr3p9J0y_-p90q_y8wZG-OuhdUuBLYlmjnYsSDcKDzn41YT2tPR_Bt0ozomoa8tsUtthffIugrZ0UNmQ/s320/2015-09-07+07.11.14.jpg" width="240" /></a></div>
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We enjoyed having our Viking friends join us bright and early for the Mile 1 party palooza!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioynl60_nvpQ0JhyJQ04botFckdBjlTHdhOaZ-Yczm4Lkq1-4jHwymk2vmq8PBf07_Vj_Gk6oWkNUdqpcsEb-HEbHspKP04WQMj8oyX5sDkh9s5SWb4IqaiqmjXvQF-0JJvL8qtFQ51w/s1600/2015-09-07+07.25.58.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioynl60_nvpQ0JhyJQ04botFckdBjlTHdhOaZ-Yczm4Lkq1-4jHwymk2vmq8PBf07_Vj_Gk6oWkNUdqpcsEb-HEbHspKP04WQMj8oyX5sDkh9s5SWb4IqaiqmjXvQF-0JJvL8qtFQ51w/s640/2015-09-07+07.25.58.jpg" width="640" /></a></div>
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Mile 1 had a lot a lot a lot of cowbell.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2VFBEco8LMuoim8LEnlA2KKLY_ulUuce94FTb1QF7C2JNNOx5Ex9whiAtsKSOPypvdsipDPCMsTe9-zuRFDtopYUFZGjA-5E_kIth_pzDB4xyD1DtulFEvy1TkK3KLmUbKL34d0BOXw/s1600/2015-09-07+07.30.28.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2VFBEco8LMuoim8LEnlA2KKLY_ulUuce94FTb1QF7C2JNNOx5Ex9whiAtsKSOPypvdsipDPCMsTe9-zuRFDtopYUFZGjA-5E_kIth_pzDB4xyD1DtulFEvy1TkK3KLmUbKL34d0BOXw/s400/2015-09-07+07.30.28.jpg" width="300" /></a></div>
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The runners just kept coming! We saw several CF supporting friends run by!</div>
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The highlight of the day was the Awards ceremony. We finally met the face behind the magic of the Hogwarts Running Club (<a href="http://www.hogwartsrunningclub.org/">www.hogwartsrunningclub.org</a>) </div>
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and his lovely family. Our CF family just grew a lot more!</div>
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Hogwarts Running Club was amazing. They surprised us by adding a TWO to the FRONT of our $5,000.00 check...</div>
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That's right, they donated $25,000.00 to Elena's team Rosebuds after they heard her story earlier this year. It was such an amazing surprise that there were very few dry eyes in the group. </div>
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THANK YOU HOGWARTS RUNNING CLUB!!!</div>
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I leave you with a reminder of what Cystic Fibrosis does to our loved ones.</div>
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CF hoards time due to treatments, steals freedom because of surprise illnesses suddenly sprouting up, thunders through days spent at doctor offices and hospitals, crashes down on family events, sucks dry bank accounts to pay for treatment & meds, and strikes fears into the hearts of CF parents that worry about one day...</div>
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CF may take away the life of their little one as it has done to so many others. </div>
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Dear CF,</div>
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CF, I hope you have your boxing gloves on because this CF family is ready to fight. </div>
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I know exactly #whyirunmiles4cf and you are gonna lose this fight.<br />
Sincerely, a CF mom with a lot of strength and sass<br />
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motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com1tag:blogger.com,1999:blog-7686013339968426344.post-40896308993937008482015-08-29T11:18:00.000-04:002015-08-29T11:18:00.151-04:00CF does not slow this kid down at ALLWeek one of school is behind us. I'm pretty sure this has been our best first week ever!<br />
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We have done a "First Day of School" video since Elena was in Kindergarten. <br />
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Day 2 of school...why not go zip-lining and learn about nature on the hike to the tour start!<br />
Yes, please! This was AFTER Elena had 10 vials of blood taken for annual labs...how does she DO it?!?!<br />
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Day 3 was a home day where we enjoyed the cooler weather and Elena dove right into her school work. <br />
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She is loving the flexibility of being at home and doing her school work in her new grown up bedroom.<br />
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We ended the day with a family science experiment. </div>
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We did this experiment our own way for sure.</div>
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/-HkBSMLVfiw/0.jpg" src="https://www.youtube.com/embed/-HkBSMLVfiw?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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Day 4 we were back at our homeschool CO-OP where Elena taught her very own class! She did so amazingly well. I had the honor of being her assistant (although she needed NO help). Elena is such a mature young lady. Cystic Fibrosis is no piece of cake to manage. Maturity helps her manage all she does with such grace.</div>
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Day 5 was all about exercise! Lungs stay strong when you exercise regularly. This is important for everyone, but especially for those with Cystic Fibrosis. Elena and her siblings know this, understand this, and are always happy to help with this!</div>
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Days are hectic, but yet they don't feel as such when you are surrounded by so much happiness and great friendship...and coffee.motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-74078108394580203772015-08-21T12:51:00.000-04:002015-08-21T12:52:52.956-04:00Mile 1 Dedication to our little grown up girl!<span style="background-color: white; font-family: Arial, Helvetica, sans-serif;">Mile 1 for Elena and all of her giant eyelashes!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This Labor Day we are doing things a little different with the Big Peach Sizzler 10k benefiting Miles for Cystic Fibrosis. Who doesn't <span style="line-height: 19.3199996948242px;"> love to get up early and act goofy for a couple of hours? We will be up early on the morning of Labor Day with noise makers, costumes, wigs, cowbells (I've got a fever and the only prescription is more cowbell), and any shenanigans we can muster for a couple hours. </span><span class="text_exposed_show" style="display: inline; line-height: 19.3199996948242px;">Don't worry, we have a karaoke machine. The locals are gonna love us! Why are we doing this?</span></span></span><br />
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<span class="text_exposed_show" style="display: inline; line-height: 19.3199996948242px;">We want to be the loudest and craziest mile marker on the course! If you would like to be there in spirit, you can make a donation at the link below. My parents got our fundraising off to a great start by getting us only $500 away from reaching our goal (go Mom and Dad!)</span><span class="text_exposed_show" style="display: inline; line-height: 19.3199996948242px;">We have dedicated the first mile in honor of Elena. Our goal this year with the race is to have the runners see faces of those with CF at each mile along the 6.2 mile course so they recognize where their registration dollars are going. </span></span><br />
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<b><span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-size: 14px; line-height: 19.3199996948242px;">Link to donate is below:</span></b></span></span><br />
https://www.razoo.com/story/Elena-S-Eyelashes-Will-Wow-You?referral_code=sharemotherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com1tag:blogger.com,1999:blog-7686013339968426344.post-46587366638399581012015-08-03T15:12:00.002-04:002015-08-03T15:22:23.595-04:00Show Love Under All Circumstances...even when CF weighs you down.<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/52OMhsGaJWY/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/52OMhsGaJWY?feature=player_embedded" width="320"></iframe></div>
<br />
Elena has been making little videos. Her latest was about her family. She gets the importance of taking care of herself so she can take care of others. She understands the value in showing love in all of her actions under all circumstances...yes, even when she is irritated by the daily hassle of her CF routine that doesn't seem to be improving her lung function month after month.<br />
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Elena is growing up so quickly and Cystic Fibrosis continues to be a challenge that she hits head on each morning with a smile on her face and her siblings by her side. <br />
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That, my friends, is living life to its fullest. <br />
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<tr><td class="tr-caption" style="text-align: center;">As our dog Flanders has taught us all, "Wag more, Bark less". Trust me on this sound piece of advice.</td></tr>
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motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-19202759496951213362015-08-03T15:06:00.001-04:002015-08-03T15:06:08.614-04:00Whatever...I'm getting cheese fries.<div class="separator" style="clear: both; text-align: center;">
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For a diet of a CFer, we can all share this sentiment. <br />
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As she orders them she requests more cheese...more...a little more...umm more...that's good.<br />
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Then she does stuff like this and can still hold it down. THAT is talent, my friends.<br />
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Sing it sister!<br />
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motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-73678404228109379062015-07-03T10:00:00.000-04:002015-07-03T10:10:47.666-04:00"Ain't No Mountain High Enough"24 hours; I needed 24 hours to think about what the FDA's approval of Orkambi REALLY means. (read more on the approval <a href="http://www.wsj.com/articles/vertex-gets-fda-ok-for-cystic-fibrosis-drug-1435861189">HERE</a>).<br />
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<tr><td class="tr-caption" style="text-align: center;">"Ain't no Mountain High Enough..."</td></tr>
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<br />
Remember when Kalydeco was approved? Approval of Kalydeco seemed like a no brainer since the GIANT improvements in lung function were across the board for CF patients. <br />
<h4 class="what-is-headline bold">
What is KALYDECO (ivacaftor)? (as seen on <a href="http://www.kalydeco.com/">www.kalydeco.com</a>)</h4>
KALYDECO is a prescription medicine used for the treatment of cystic fibrosis (CF) in patients age 2 years and older who have one of the following mutations in their CF gene: <span class="italic">G551D, G1244E, G1349D, G178R, G551S, S1251N, S1255P, S549N,</span> or <span class="italic">S549R</span>.<br />
KALYDECO is used for the treatment of CF in patients age 2 years and older who have an <em>R117H</em> mutation in their CF gene.<br />
KALYDECO is not for use in people with CF due to other mutations in the CF gene. KALYDECO is not effective in patients with CF with <span class="no-wrap">two copies</span> of the <em>F508del</em> mutation (<em>F508del/F508del</em>) in the CF gene.<br />
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Kalydeco will not benefit Elena because she has two copies of the <em>F508del</em> mutation (which by the way, she has an excellent Harry Potter/Cystic Fibrosis tattoo idea that goes along with her mutation...as seen below!) <br />
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Kalydeco was a major break thru for CF research because it proved that CF could be "put on hold" and even help to improve the CF patients overall health! It is not a cure, but it is bridge that will buy us time to reach that cure.<br />
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<strong>So what is Orkambi and where do they come up with these drug names?</strong><br />
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<strong>Orkambi</strong> is meant for CF patients that have two copies of the <em>F508del</em> mutation like Elena!! There are printed studies that show very small improvements in lung function. The HUGE improvements we see in Kalydeco are not seen with Orkambi. Yet, this is still a drug that seems to "put on hold" any further destruction of lungs. Orkambi appears to be another bridge to give us the extra time we need to fight, fund raise, and raise awareness of Cystic Fibrosis. <br />
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We are in the process of checking Elena's eligibility to get a prescription for Orkambi. Another game changer drug that has been passed down through the pipeline. The other drug studies behind Kalydeco and Orkambi are mind blowing and more exciting (even MORE exciting is what drug names they will chose next...maybe Bambikalydecambi? See what I did there?)<br />
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"Ain't no mountain high enough" to keep us from fighting for the cure...even this potential price tag.<br />
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Thank you to all who have supported our family in so many ways since we discovered Elena's diagnosis. This is a big event in CF history and I'm thrilled to have you all share in the celebration with us. Cheers!<br />
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motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-16731998565651035842015-06-24T13:30:00.002-04:002015-06-24T16:35:55.111-04:00Why Me?These are the questions I will sometimes get when people find out that I have a child with a genetic disease. <br>
<ul>
<li>Are you mad? </li>
<li>Do you feel you have been burdened with a giant heavy weight in life? </li>
<li>Do you ever think, "This isn't fair."? </li>
<li>My personal favorite is that people assume I walk around saying, "Why me?"</li>
</ul>
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<tr><td class="tr-caption" style="text-align: center;">My oldest when she was only a few days old.</td></tr>
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My first thought to all these questions is...why are you asking ME? You should talk to the person that HAS the genetic disease. SHE is the one with all the "burdens" you are referring to. I can honestly say that from the scary moment when our oldest child was born sick, through the numerous surgeries, and then the Cystic Fibrosis diagnosis; I didn't waste time wallowing. My boot straps were pulled up and boxing gloves were on snug.<br>
<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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUheuLajQ0u00Cc3fhW-TKlxmvOXXjhwHDCZniI3dz1fvC4W6v95k8kMwrJJRBFxQFppu6U7Zp006qc8xYwdvxPoXUFo24Z4uJCZjxPNQvsZ0D3s8mYJrBdenKPeBqjgfPiQf8ADkdYg/s1600/2015-05-26+14.53.34.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUheuLajQ0u00Cc3fhW-TKlxmvOXXjhwHDCZniI3dz1fvC4W6v95k8kMwrJJRBFxQFppu6U7Zp006qc8xYwdvxPoXUFo24Z4uJCZjxPNQvsZ0D3s8mYJrBdenKPeBqjgfPiQf8ADkdYg/s320/2015-05-26+14.53.34.jpg" width="320"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My oldest all grown up and wearing my clothes...that's just crazy.</td></tr>
</tbody></table>
However, here are my responses to these questions.<br>
<br>
<u>Am I mad?</u><br>
Mad at what, whom, why? I have nothing to be mad about. I have a husband that loves me and our 4 beautiful children, one who happens to have a life shortening genetic disease. What is there to be mad about? I embrace each day and look for the good. My sister has always said I am a Pollyanna; always looking for and finding the good in things/situations/people. Guilty as charged; It's true. Why see bad things when you could see good things? It's simple; good things make you happy and bad things do not. I want to be happy. Do I still see the bad stuff? EVERYDAY the bad stuff is there. Bad stuff will swallow you up if you allow it. Yet, there is always a sparkle of happiness. I see it and you can, too. ALLOW yourself to see the good in others and eventually they may choose to return the favor. Life is full of tough situations and difficult relationships. There are plenty of opportunities where the wrong words are spoken and the feeling of love and respect seems lost. YET, goodness is still there. Once I talk through my sadness on life's tough moments and feelings of loss...the sparkle of good shines again. Go ahead, be Pollyanna...you know you want to:)<br>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidgMwhP-NbWFm6nMxzF4ZmVPjvTd2XJS6TIUhh_LyWxFNjQPkgQ8XW4SZeWUMZRNhLudlMxo7sqgmwDLTPLtsTkdQ8nWZFeQ29-ObOQLX5jgwPInupNp1GvkMoUy3TzWbFL6yeO_ZqHQ/s1600/2015-04-26+12.42.52.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidgMwhP-NbWFm6nMxzF4ZmVPjvTd2XJS6TIUhh_LyWxFNjQPkgQ8XW4SZeWUMZRNhLudlMxo7sqgmwDLTPLtsTkdQ8nWZFeQ29-ObOQLX5jgwPInupNp1GvkMoUy3TzWbFL6yeO_ZqHQ/s320/2015-04-26+12.42.52.jpg" width="320"></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Good friends by your side will make the "Pollyanna Effect" easy to maintain.</td></tr>
</tbody></table>
<u>Do I feel I have been burdened with a giant heavy weight in life?</u><br>
Cystic Fibrosis, breast cancer scares, surgeries, lost relationships, lack of forgiveness, miscommunications, car accidents, health issues...how could I pick just one heavy weight? Instead, I have chosen to not carry any weights with me. I choose to carry around smiles, giggles, adventures, and joy. <br>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZV3l0-alWnF8tcAUK-P4gAzyMrUCVFYd6B3OWeugZNDWkMsExepVy2e91CRv1tJVQYTda4vCdWHTw572CSBQdX77X3cuIVCGdTkPjC7cp5DRDjRgShvSRSydvD6Ppj9H2ULGIl-XKQA/s1600/2015-06-17+11.55.28.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZV3l0-alWnF8tcAUK-P4gAzyMrUCVFYd6B3OWeugZNDWkMsExepVy2e91CRv1tJVQYTda4vCdWHTw572CSBQdX77X3cuIVCGdTkPjC7cp5DRDjRgShvSRSydvD6Ppj9H2ULGIl-XKQA/s320/2015-06-17+11.55.28.jpg" width="320"></a></div>
There are times when I can't find those things just like my car keys the dog has run off with or my phone that I can't seem to keep track of unless it is strapped to my forehead. <br>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF1pr9OMTdqH20lm31d8UBrmvQpFxxi5CKvtqmdjpWTtgWF8XEpunAIKn84BB38HW2t9xL-PIomhYBcBnvae_FyPIZCoQm_gJWjuxt0NVZwYfeSJ12sMDyCEZeqFEgjpq3-uvG4TNP7Q/s1600/2015-06-10+13.34.26-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF1pr9OMTdqH20lm31d8UBrmvQpFxxi5CKvtqmdjpWTtgWF8XEpunAIKn84BB38HW2t9xL-PIomhYBcBnvae_FyPIZCoQm_gJWjuxt0NVZwYfeSJ12sMDyCEZeqFEgjpq3-uvG4TNP7Q/s320/2015-06-10+13.34.26-1.jpg" width="320"></a></div>
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Then one of my kids will run over and kiss my cheek saying I am the best Mommy ever or my husband will send me a text from work saying he appreciates me so much. Ahhhh, yes, there is the joy and giggles that were lost for a moment and then found again. Choose to look for and carry around that happy and drop the sad like it was hot. You owe that to yourself and your family.<br>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigfl9BVW4e_A33QUkuCgWKns5I6WKTujGSCsyJvYS5zPJ4LGqCXGFT1s4b3W536oLSRLmrFdHPQPZn5642CnYF7GJZsdedDDLzDY334IOvwUEgO8xMGn0fWSiru5Q7qKhbfwfScmH7iA/s1600/2015-05-26+17.26.56-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigfl9BVW4e_A33QUkuCgWKns5I6WKTujGSCsyJvYS5zPJ4LGqCXGFT1s4b3W536oLSRLmrFdHPQPZn5642CnYF7GJZsdedDDLzDY334IOvwUEgO8xMGn0fWSiru5Q7qKhbfwfScmH7iA/s320/2015-05-26+17.26.56-1.jpg" width="320"></a></div>
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<u>Do I ever think, "This isn't fair." ?</u><br>
Why would I ever waste my time thinking this? Friends have sickness, other genetic diseases, cancers, and major health problems they juggle everyday. There are people all over the world starving to death, without homes, and without fresh water. There are friends out there that have lost loved ones too soon; parents, siblings, or children in utero, at birth, as young toddlers, children, teens, and adults. They hold onto their memories and I get to hold onto my husband, my kids, and my parents. Yet, I am going to complain my daughter has a genetic disease that MAY take her too soon? I don't think so. She has access to amazing medicines and doctors at any moment we need them to help her with her complicated health needs. My life is nothing to complain about...ever.<br>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUsoqGl-tanTemzeLL2KGF1LchJfi-MBc8v1Q7T6x3m9zbHHBPhyphenhypheno-xlJsdGVY8Y7w3i3c9u1aVZxdzFbCtwKXooLzhGlxHskYCm7UoJDwYigTGt8q1igZgkC57dtX9lJEKPAa5zYJjw/s1600/2015-06-08+19.01.16.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUsoqGl-tanTemzeLL2KGF1LchJfi-MBc8v1Q7T6x3m9zbHHBPhyphenhypheno-xlJsdGVY8Y7w3i3c9u1aVZxdzFbCtwKXooLzhGlxHskYCm7UoJDwYigTGt8q1igZgkC57dtX9lJEKPAa5zYJjw/s320/2015-06-08+19.01.16.jpg" width="320"></a></div>
<br>
<u>Do I ever ask, "Why me?"</u><br>
I have not and will not ever ask this question of myself. Do I wish my child did not have this health issue to complicate her life? Sure! No one would wish heartache and health issues on someone they love. I do not think I was given a child with special needs because I could handle it. I think ANYONE can do ANYTHING for their children when they have love in their hearts. Some will do better and/or more gracefully than others and we will all think that we are failing in some way, but parents are always going to try their darn hardest for their children. <br>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifxhMrwnvIKNnQNK-g0lszBLqEV9DO7Z3bmWnEgVnSZLNV_ggf3WdZNiuzxILS_PPbgb0rwdAhIEOUTnkQGSaSP6YoJGMC5jtICuJsLkUDuekw09jI7ObPJ5GWRFWbfUczdPm5kPtTkA/s1600/2015-05-21+14.07.59.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifxhMrwnvIKNnQNK-g0lszBLqEV9DO7Z3bmWnEgVnSZLNV_ggf3WdZNiuzxILS_PPbgb0rwdAhIEOUTnkQGSaSP6YoJGMC5jtICuJsLkUDuekw09jI7ObPJ5GWRFWbfUczdPm5kPtTkA/s320/2015-05-21+14.07.59.jpg" width="320"></a></div>
<br>
You should see the trend here.<br>
(If not, my English professors told me that a journalist/author I am not.) <br>
<br>
A very wise and beautiful Aunt told me, "Live with NO regrets." <br>
Life is simple yet we chose to make things complicated. <br>
K.I.S.S (Keep It Simple Stupid) <br>
Show love to people around you. <br>
Find joy in as many things as you can during your day. Make it a game.<br>
Don't carry the weight of sad/bad/mad when life is so short. <br>
<br>
Yes, life is difficult, yet you are still alive...marvel at that and be thankful for it. You still have time to love on the people around you. Yes, you can mope; but while moping, be searching for that sparkle of good while taking the moment to squeeze your family tight. You have this moment right now and once it passes, it is gone and you can't take it back. <br>
<br>
Sooooooooooo........Why me? Because I am worth it. I am worth fighting for. I owe it to my family to take care of myself so I can take care of them. I deserve joy and loads of it so I can spread that goodness around. YOU DO TOO!<br>
<br>
P.S. Elena's health is doing very well as you may have guessed from her pictures above.<br>
motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-88036142220048831872015-05-18T11:47:00.001-04:002015-05-18T13:04:52.197-04:00This Post is Brought to You by the Letter "E"<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: x-large;"><strong><u>E</u> is for:</strong></span></div>
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<span style="font-size: large;"><strong><u>E</u>xample: she leads by example with her siblings and all who she come in contact with.</strong></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6ONtrlJl5WVOLg6bO0znCx1DYqbWt-k4tYGFWrr9RcxBNKPCAAlBGzsROf-bmendXRt74kUdAs1oLA3xo56gBLOahOWWojk-BX0aan520jeIQ-ON-GdjBZAtq6zBkNKOCiTdTFQN0Rw/s1600/2015-05-01+13.34.05.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6ONtrlJl5WVOLg6bO0znCx1DYqbWt-k4tYGFWrr9RcxBNKPCAAlBGzsROf-bmendXRt74kUdAs1oLA3xo56gBLOahOWWojk-BX0aan520jeIQ-ON-GdjBZAtq6zBkNKOCiTdTFQN0Rw/s320/2015-05-01+13.34.05.jpg" width="320"></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY3b9bM0gRu-45MVOLvUjdayjO12WmWOxmrJ1cZCEOSWTIzH9J2j0wCtAbT6tzJ7YXbr9q8KONjdSoXsF0pVQ_dZ97i7gvNVNApX9sqneTGbjxhrvS43J7pdvYWnP3zH2SFCky2zaqEg/s1600/2015-05-06+10.26.17.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY3b9bM0gRu-45MVOLvUjdayjO12WmWOxmrJ1cZCEOSWTIzH9J2j0wCtAbT6tzJ7YXbr9q8KONjdSoXsF0pVQ_dZ97i7gvNVNApX9sqneTGbjxhrvS43J7pdvYWnP3zH2SFCky2zaqEg/s320/2015-05-06+10.26.17.jpg" width="240"></a></div>
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<span style="font-size: large;"><strong><u>E</u>xplorer: She is the first to create or join in an adventure.</strong></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQjIPsALQP8BxBNvvaMXwBXkZYIu3pNMCxu_onPEogppjEnNMi2wBVfmxwTWX1FwMszeUf-n-3PPCHYCitme6jw2pqa9TJwRdSraexw13j2RJp8oB-n83m9wsw8Ri7wsQKMWdCP8esRQ/s1600/2015-05-01+13.55.18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQjIPsALQP8BxBNvvaMXwBXkZYIu3pNMCxu_onPEogppjEnNMi2wBVfmxwTWX1FwMszeUf-n-3PPCHYCitme6jw2pqa9TJwRdSraexw13j2RJp8oB-n83m9wsw8Ri7wsQKMWdCP8esRQ/s320/2015-05-01+13.55.18.jpg" width="320"></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_pDHP511CQDKcB6zsl_SgW8362RJrl7rTcfqyPtj13m5LbI4zEQDPQr84yGzIsMz91uyV6uORTmo-H2IEfRqjqxGMkj_Q4B04eRgy1BgegXOzQXiL_i75zjZIZFPf-VrxfDMKqfiIuw/s1600/2015-05-01+15.23.20.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_pDHP511CQDKcB6zsl_SgW8362RJrl7rTcfqyPtj13m5LbI4zEQDPQr84yGzIsMz91uyV6uORTmo-H2IEfRqjqxGMkj_Q4B04eRgy1BgegXOzQXiL_i75zjZIZFPf-VrxfDMKqfiIuw/s320/2015-05-01+15.23.20.jpg" width="320"></a></div>
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<strong><span style="font-size: large;"><u>E</u>nergetic: She can make the little things exciting! (oh, there is another E word!)</span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp3bq4a5niWBm5KUn6O7CljELcNv1Ajt90eiix1R-ps5eRMR3pgD3qSTRnZBWi4Ex2kde874s3V4dVDle4_0bq2rGE9VPQB2TFrP8qC9hr9QWPLuc1h8jcBZVP92bxFOQpw7okJAg3CQ/s1600/2015-05-01+17.54.16.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp3bq4a5niWBm5KUn6O7CljELcNv1Ajt90eiix1R-ps5eRMR3pgD3qSTRnZBWi4Ex2kde874s3V4dVDle4_0bq2rGE9VPQB2TFrP8qC9hr9QWPLuc1h8jcBZVP92bxFOQpw7okJAg3CQ/s320/2015-05-01+17.54.16.jpg" width="320"></a></div>
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<strong><span style="font-size: large;"><u>E</u>xtraordinary: Give her a little idea and she will RUN with it and it will be completed in a way that makes you go...WOW!</span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-zTgBWpVwCwZDwLvfRKqkNnhOwhJqVZdMNbsl16ZMJMBuQS_gePMpblXqmj_NRCCvZucHyr-r6fjdewygpDiDq8HJpVIJN8pH_aDB9bfx1ka8DYJAAZBZ_5p9OuqOMq9cMCWZFjBceQ/s1600/2015-05-02+15.56.33.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-zTgBWpVwCwZDwLvfRKqkNnhOwhJqVZdMNbsl16ZMJMBuQS_gePMpblXqmj_NRCCvZucHyr-r6fjdewygpDiDq8HJpVIJN8pH_aDB9bfx1ka8DYJAAZBZ_5p9OuqOMq9cMCWZFjBceQ/s320/2015-05-02+15.56.33.jpg" width="320"></a></div>
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<span style="font-size: large;"><strong><u>E</u>laborate: NOTHING is simple with this one. Her stories, plays, skits, shows, explanations...all are EXTREMELY Elaborate and we love it. (unless we are in a hurry, then we ask for the condensed version)</strong></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBaVMW-sTNBhsBJcJ9Xy3cEQ8BZu2wes9IkX-jzmcVn3W-Rp2Y1_vu1nAJzDxWUizBuunJ-0GpdxhQcVK9plGn0Jo2hknPVvR7qtglJ8Pwd-3Srnx1HJ9-iP4qnZWKojfBOlMWLV69Ew/s1600/2015-05-03+10.51.05.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBaVMW-sTNBhsBJcJ9Xy3cEQ8BZu2wes9IkX-jzmcVn3W-Rp2Y1_vu1nAJzDxWUizBuunJ-0GpdxhQcVK9plGn0Jo2hknPVvR7qtglJ8Pwd-3Srnx1HJ9-iP4qnZWKojfBOlMWLV69Ew/s320/2015-05-03+10.51.05.jpg" width="320"></a></div>
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<strong><span style="font-size: large;"><u>E</u>legant: All she does is with grace and style. I hope to be like her when I "grow up". </span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR7ntLtbypzJBC80EoCd1_CkA3cTmYCCFDtPb8f1nP8GIjCJXorhb92lHBH1qJAoWZvPmlRu9XuGgo9jJ9yzPYWp8va94T0e3e1ZQXacEyf9xarjYZ7pQjCeh_JOf6igLpc-d-yb2A1w/s1600/2015-05-03+12.21.19.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="69" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR7ntLtbypzJBC80EoCd1_CkA3cTmYCCFDtPb8f1nP8GIjCJXorhb92lHBH1qJAoWZvPmlRu9XuGgo9jJ9yzPYWp8va94T0e3e1ZQXacEyf9xarjYZ7pQjCeh_JOf6igLpc-d-yb2A1w/s320/2015-05-03+12.21.19.jpg" width="320"></a></div>
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<strong><span style="font-size: large;"><u>E</u>motional: Things are super tough for her sometimes. However, she can handle the difficult times with ease. Usually, she handles her health difficulties much better than her mama and I'm ok with that!</span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH0SjxL4IaXVLxT6OX9xBeMb1TXiMFlvKGkkHfTa5aSin2q9mbT-j6IxjvuMCM8zcKeTmw-Brh3qxl3E3xV-qzTPzRZOST0-Eqn9dS_jdo7mm0YVqIZmgVYFgk-EpFYFUSF6irPLHFqA/s1600/2015-04-14+14.36.17.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH0SjxL4IaXVLxT6OX9xBeMb1TXiMFlvKGkkHfTa5aSin2q9mbT-j6IxjvuMCM8zcKeTmw-Brh3qxl3E3xV-qzTPzRZOST0-Eqn9dS_jdo7mm0YVqIZmgVYFgk-EpFYFUSF6irPLHFqA/s320/2015-04-14+14.36.17.jpg" width="320"></a></div>
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<strong><span style="font-size: large;"><u>E</u>ccentric: Theater and Acting is her JAM!</span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh90HqofXxnL-3leh-DEOS7gCFFzdgawlPsCDw0BjTS21_SVI8lH8X8w8LQCuGdIfc931dPCdXqPl1kKw9KVfzI2ow-sx28gqjY77lEYI1cnJcVqtGYkZwvJ3w10wZpSP0VNQD1QT_q7w/s1600/2015-04-24+18.30.02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh90HqofXxnL-3leh-DEOS7gCFFzdgawlPsCDw0BjTS21_SVI8lH8X8w8LQCuGdIfc931dPCdXqPl1kKw9KVfzI2ow-sx28gqjY77lEYI1cnJcVqtGYkZwvJ3w10wZpSP0VNQD1QT_q7w/s320/2015-04-24+18.30.02.jpg" width="240"></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSauR1uyAvNzHuA3gpKIYLCt9-oPnGzP-oJDh55g6V1aL6d4TcFOq9BElwToAT55i56fLUDvBz8oMBHzOzfLenEe8c1pOIsUAtmNvpeB61epA92MkvJLqecdrtaiWvJYEFyQEGjVYgGA/s1600/2015-04-24+19.15.07.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSauR1uyAvNzHuA3gpKIYLCt9-oPnGzP-oJDh55g6V1aL6d4TcFOq9BElwToAT55i56fLUDvBz8oMBHzOzfLenEe8c1pOIsUAtmNvpeB61epA92MkvJLqecdrtaiWvJYEFyQEGjVYgGA/s320/2015-04-24+19.15.07.jpg" width="320"></a></div>
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<strong><span style="font-size: large;"><u>E</u>fficient: We are a homeschool family on the go a lot and she does her best to be compliant in her treatments.</span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0onfAgGY0jwDc1WDJAMYkx84F5gbyZIqPWG_G8yHY7NSO0UNozkQEjGmKWV_Lueekm6Rxdj0Pj0RPsqY_CYE8G8geigGps-WxwilCqqpBo1j36u9Fw_cvxRZedkMDbcza-6ad9o4Yaw/s1600/2015-04-27+09.20.49.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0onfAgGY0jwDc1WDJAMYkx84F5gbyZIqPWG_G8yHY7NSO0UNozkQEjGmKWV_Lueekm6Rxdj0Pj0RPsqY_CYE8G8geigGps-WxwilCqqpBo1j36u9Fw_cvxRZedkMDbcza-6ad9o4Yaw/s320/2015-04-27+09.20.49.jpg" width="240"></a></div>
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<strong><span style="font-size: large;"><u>E</u>xuberant: She will use her positive "force" </span></strong></div>
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<strong><span style="font-size: large;">on you when you are near her. Watch out!</span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdmvaCR_6NIG0-g27gFCYrN-gsW8JXns16pQSkfZJVP2ROoKUmJnMWDbhZNXC_QfnUkxFEPHDlo1f5fB7ypaCzac7hTauYluxFyYAmWJcqgIjS7XvhpniTrrCG8nuTcQs1iq1BTfWcyQ/s1600/2015-05-05+20.41.55.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdmvaCR_6NIG0-g27gFCYrN-gsW8JXns16pQSkfZJVP2ROoKUmJnMWDbhZNXC_QfnUkxFEPHDlo1f5fB7ypaCzac7hTauYluxFyYAmWJcqgIjS7XvhpniTrrCG8nuTcQs1iq1BTfWcyQ/s320/2015-05-05+20.41.55.jpg" width="320"></a></div>
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<span style="font-size: large;"> <strong><u>E</u>dgy: She wanted a pet tarantula so she could have her own pet that people would think was weird...she met both goals on this one.</strong></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOzvx6x_049uvvENfPnpBaZ4KizmNfJ3cIFHS-quHRxo_V1GOX7nTHJnpZe09Lq4vjPe2R09rRx2ph4ApdDr5g2WVEIVsPaMc5x_bVD7C6a3MeaFMOsR0nqOKdAeqw6R110xV4mKFJfw/s1600/2015-05-06+11.33.41.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOzvx6x_049uvvENfPnpBaZ4KizmNfJ3cIFHS-quHRxo_V1GOX7nTHJnpZe09Lq4vjPe2R09rRx2ph4ApdDr5g2WVEIVsPaMc5x_bVD7C6a3MeaFMOsR0nqOKdAeqw6R110xV4mKFJfw/s320/2015-05-06+11.33.41.jpg" width="320"></a></div>
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<strong><u><span style="font-size: large;">E</span></u><span style="font-size: large;">xtreme: She will ride roller coasters one after the other until her Mom's face is purple and Mom is saying "Uncle."</span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihFyDFlCRG2J3ATM5T2YZn9wQS2cV1KQfjXRRB5hThR0csJhI2ztSNtpT7WoZlA4MLwwDVQGN2qeaE3r1RN51euR-FRmX6ROra0RN44L4b07fBDkjUa0rT4CaN_kjlCUU3IaegQG5CiQ/s1600/2015-05-08+14.01.05.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihFyDFlCRG2J3ATM5T2YZn9wQS2cV1KQfjXRRB5hThR0csJhI2ztSNtpT7WoZlA4MLwwDVQGN2qeaE3r1RN51euR-FRmX6ROra0RN44L4b07fBDkjUa0rT4CaN_kjlCUU3IaegQG5CiQ/s320/2015-05-08+14.01.05.jpg" width="240"></a></div>
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<strong><span style="font-size: large;"><u>E</u>xtraordinary: She teaches her self more than I could ever teach her. Life experience has matured her so much and she is only 11! She graduated from Elementary school this year...middle school... really?!? </span></strong></div>
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<img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUpAEKXG8xEP8GmxeKZIzP5h2uH4R7Y5cL5DjTI2WnBvizdOp5CtH4Uv5QuDfOvCytKdXkY0FLkK6UQoxgE5Du7as4kgz8q-0QdS6SUzfTZYyThrXPk935OzF0KcXi39vpjuwlJdADkA/s320/2015-05-16+12.15.13.jpg" width="320"></div>
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<span style="color: black; font-size: large;"><strong><u>E</u>ffervescent: She is spirited, bubbly, and full of the essence of life on so many levels.</strong></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUZxAb59JJG2B9TKMJUgkxiUaBu-D4Uh-OKgBg73z0fzjK_8QSMcLQxz1dhTd450PWIuR6u35WFgDFPI092nxqQEkZcZgaEsPUyY_Q-6hN0krGN-eAwuf_rvmlMusSDuojTTE2eUf7oA/s1600/2015-05-16+09.05.48.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUZxAb59JJG2B9TKMJUgkxiUaBu-D4Uh-OKgBg73z0fzjK_8QSMcLQxz1dhTd450PWIuR6u35WFgDFPI092nxqQEkZcZgaEsPUyY_Q-6hN0krGN-eAwuf_rvmlMusSDuojTTE2eUf7oA/s320/2015-05-16+09.05.48.jpg" width="320"></a></div>
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<strong><span style="font-size: large;"><u>E</u>mpty is what my life is NOT with Elena, </span></strong></div>
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<strong><span style="font-size: large;">the three little E's, and my husband around; </span></strong></div>
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<strong><span style="font-size: large;">EVEN with the hardships of Cystic Fibrosis.</span></strong></div>
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<strong><span style="font-size: large;"></span></strong> </div>
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<strong><span style="font-size: x-large;"><u>E</u>lena </span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif-DKZjLCw4IVud_p2vCHCnvi9D7BY_xLier_WPu8q7dqghIHG_fZhqBebDBPpSIRaz6aET_Oy1mTZ7fC5bbnIHwPAv8oNYK1Sdpl8oY1ny2bgJobum9EPIQeiR35IhvekKeZBlZhh2A/s1600/2015-04-28+11.31.57.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif-DKZjLCw4IVud_p2vCHCnvi9D7BY_xLier_WPu8q7dqghIHG_fZhqBebDBPpSIRaz6aET_Oy1mTZ7fC5bbnIHwPAv8oNYK1Sdpl8oY1ny2bgJobum9EPIQeiR35IhvekKeZBlZhh2A/s320/2015-04-28+11.31.57.jpg" width="320"></a></div>
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<strong><span style="font-size: large;">There are many reasons why we </span></strong></div>
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<strong><span style="font-size: large;">walk, run, volunteer, donate, fight, persist...</span></strong></div>
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<strong><span style="font-size: large;">to <u>E</u>nd Cystic Fibrosis and make it stand for Cure Found so <u>E</u>lena's <u>E</u>xemplary life can go on and on till she is a 100 plus!</span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0Clsfsgc-7apZA_C_189SzmyPNThOBQpQ3Feon3MN8OlLYjuwq6bcXVnTtQ8_JdVRierc1DUs0-7pe3zVbkO-pABYI2lnTqS_JC0k9BeKs9r3hvWhOSfk7TIIkhUcWEJKSrhrRkbYCQ/s1600/2015-05-16+08.58.55.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0Clsfsgc-7apZA_C_189SzmyPNThOBQpQ3Feon3MN8OlLYjuwq6bcXVnTtQ8_JdVRierc1DUs0-7pe3zVbkO-pABYI2lnTqS_JC0k9BeKs9r3hvWhOSfk7TIIkhUcWEJKSrhrRkbYCQ/s320/2015-05-16+08.58.55.jpg" width="320"></a></div>
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<span style="font-size: x-large;">There is still time to donate towards our team at: </span><a href="https://www.makeyeshappen.com/Athlete/Profile/7433"><span style="font-size: x-large;">https://www.makeyeshappen.com/Athlete/Profile/7433</span></a></div>
motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-82456824626504319362015-05-04T10:17:00.000-04:002015-05-04T10:18:54.159-04:00On your mark, get set, cure CF!<div style="text-align: center;">
Rain storms are apparently our kryptonite! We were rained out of our kids race on April 25th for Rosebuds. However, we made sure to run as soon as the rain stopped. </div>
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Cystic Fibrosis can be an overwhelming disease for the patient and their family. Everyday isn't difficult, but there are many moments during the day that can crush a parent. We are fortunate that our daughter, Elena, is a champ with her medicines (the whole cabinet full of them). She is compliant with her treatments (All 1 and 1/2 hours of them). "Can't" is not a word in her vocabulary. She views herself as pretty, smart, and confident. That is what you want in life for your child. Elena has all the support she needs because of the many amazing people in her life. Thank you for being a part of that!</div>
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Here are our Rosebuds running today during the brief sunshine!</div>
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On your Mark, get set,</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3KPuu-2-3DBGR8s5wB-kHHcxVrGgi2vEkP2CgmxLhResaO9Fiu0nKgNTPdnSNu2X_FudwtXgD8nztb716c7I8_IaCp9iDNblKxLP4mTQWcI7g88471GOeiynYPahMb3dukaGrcPdKcQ/s640/blogger-image--1113294325.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3KPuu-2-3DBGR8s5wB-kHHcxVrGgi2vEkP2CgmxLhResaO9Fiu0nKgNTPdnSNu2X_FudwtXgD8nztb716c7I8_IaCp9iDNblKxLP4mTQWcI7g88471GOeiynYPahMb3dukaGrcPdKcQ/s400/blogger-image--1113294325.jpg" width="400" /></a></div>
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GO!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinO6L6TOgRSVsizipDVx7wZtr07r3sVngBKHdd1lcgOIx5QolGn0aEu3FqZZOR8ez9uNIiQBEA4ywhR0KIjW9tvjOWXtSJ8DArv2K8eyTxLqpADUjHU8KvT7WJFEN6jpQ9FBGGpLkBQQ/s640/blogger-image--697829549.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinO6L6TOgRSVsizipDVx7wZtr07r3sVngBKHdd1lcgOIx5QolGn0aEu3FqZZOR8ez9uNIiQBEA4ywhR0KIjW9tvjOWXtSJ8DArv2K8eyTxLqpADUjHU8KvT7WJFEN6jpQ9FBGGpLkBQQ/s400/blogger-image--697829549.jpg" width="400" /></a></div>
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Short legs unite!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlbRYta4C_RvCXufFfNECSYM0WcD6cp-WLCSVGh2RmGrHzK6NRm3C0ZUfIm3cWsc66Uo89VgDsyJFehuPh9PFNHevxmheWzxEkEiRIUYrB2AMSEkh0lIyVbYChrMr7e3o6QfOxQqXZ7w/s640/blogger-image-1876976045.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlbRYta4C_RvCXufFfNECSYM0WcD6cp-WLCSVGh2RmGrHzK6NRm3C0ZUfIm3cWsc66Uo89VgDsyJFehuPh9PFNHevxmheWzxEkEiRIUYrB2AMSEkh0lIyVbYChrMr7e3o6QfOxQqXZ7w/s400/blogger-image-1876976045.jpg" width="400" /></a></div>
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And the winner is...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikVsEmoO9wzTVu-LYLIsOLfo8-4h9CruIQLEGZ7RR3S_BBhlD1wIvp6qL8-cKv-zgTM1HeXD_tB4_nKVcClzAHOe243wYFEBdSzgdh7Lm_wEOiUb1mYS2g2cGMvDtYAnZhMuML9p-rUg/s640/blogger-image--31718061.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikVsEmoO9wzTVu-LYLIsOLfo8-4h9CruIQLEGZ7RR3S_BBhlD1wIvp6qL8-cKv-zgTM1HeXD_tB4_nKVcClzAHOe243wYFEBdSzgdh7Lm_wEOiUb1mYS2g2cGMvDtYAnZhMuML9p-rUg/s400/blogger-image--31718061.jpg" width="300" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT6dtKhyfA7HxVdkLX1RSgxfNZ83iGZMI0dukHnWDHmaXYQdspoaPb5hZCIGFw1krxSMTuXjfa4MFskUd0TVXWAvqeTXcZfxX9AGxGS8ru6haUTdOnRmK4wt88hWVUca3yOPgURTzWbQ/s640/blogger-image-1236222341.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT6dtKhyfA7HxVdkLX1RSgxfNZ83iGZMI0dukHnWDHmaXYQdspoaPb5hZCIGFw1krxSMTuXjfa4MFskUd0TVXWAvqeTXcZfxX9AGxGS8ru6haUTdOnRmK4wt88hWVUca3yOPgURTzWbQ/s400/blogger-image-1236222341.jpg" width="400" /></a></div>
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We have encouraged all our team members to run when they can and share pictures.</div>
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Here are some of our other Rosebud CF Superheroes running their own virtual race.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiaox8TaoB9ck-Fm7asJLeL9zzh2vAchfBw5DVJwdiZexZMCnZUL9DCD1Kr7Ulilxp4SZXTtKF7EPWIdU9zwtEkDDQ3hIHTM9Z6gCtmzYJvjo-S3qsS_L4tG1a_I5DawsmDoogkhSAeQ/s1600/2015-04-27+06.38.13.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiaox8TaoB9ck-Fm7asJLeL9zzh2vAchfBw5DVJwdiZexZMCnZUL9DCD1Kr7Ulilxp4SZXTtKF7EPWIdU9zwtEkDDQ3hIHTM9Z6gCtmzYJvjo-S3qsS_L4tG1a_I5DawsmDoogkhSAeQ/s400/2015-04-27+06.38.13.jpg" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJXsPJ7tKNnX2OZVLyR9_G8Yd3ulqgMgrlGhXNzQTyBjzPoKKIFkgeTseMa-E43FdR7Mafns3Kbvlty8DluOr1WZgdRxcdjR4cqAAXUlVsnCE_l-1pNrLm7k5VYg-Kt2fj4rgUPcbhXA/s1600/2015-04-27+06.38.18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJXsPJ7tKNnX2OZVLyR9_G8Yd3ulqgMgrlGhXNzQTyBjzPoKKIFkgeTseMa-E43FdR7Mafns3Kbvlty8DluOr1WZgdRxcdjR4cqAAXUlVsnCE_l-1pNrLm7k5VYg-Kt2fj4rgUPcbhXA/s400/2015-04-27+06.38.18.jpg" width="400" /></a></div>
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Our top fundraisers were the Johnston's Crew pictured above and the Goodrow Gang! </div>
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Way to go Rosebuds!</div>
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A special award went out to our top and most consistent supporters every year since the first Rosebuds race five years ago. Thank you to the Goodrow Gang's Nana and Papa for being a huge support in so many ways! Hope you enjoy our Miles for CF super soft and amazingly cozy team hoodies! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6kxiBiA4bPa0pkRy6FeNL9KtJ8LFIzoh6qvAQH1O_fZFqfyYQZcuz7oNW-B3zSzMpEWzQzGzg1lXCiY0gkZwxRs_p47pxaluWUYJV7LvqdXu_9mAhFDrJLCQJLLC6WNvdKOtIsQXVQg/s1600/2015-04-29+11.09.36.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6kxiBiA4bPa0pkRy6FeNL9KtJ8LFIzoh6qvAQH1O_fZFqfyYQZcuz7oNW-B3zSzMpEWzQzGzg1lXCiY0gkZwxRs_p47pxaluWUYJV7LvqdXu_9mAhFDrJLCQJLLC6WNvdKOtIsQXVQg/s320/2015-04-29+11.09.36.jpg" width="320" /></a></div>
So far the Rosebuds have raised $2.925! Want to help us break $3,000? Donate here: <a href="https://www.makeyeshappen.com/Athlete/Profile/7433">https://www.makeyeshappen.com/Athlete/Profile/7433</a><br />
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That brings the overall total of fundraised dollars by Rosebuds CF Superheroes since 2010 up to $69,725.05!!! <br />
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Thank you to all who support our family and our cause to help find a cure for Cystic Fibrosis. Our hearts are full to the brim because of your kindness and generosity!<br />
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For our daughter Elena and all her CF friends, we say THANK YOU!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqvx-GLF2US_vRWXKo6gerA8SPA6Ab2qzxvbV5NNzon1K2N-faDeUbvhySbQWFx2IFnOgtkClBjGLnaB9pWwXVbrE63JedjneXwBp7EWeLBlRcUuWduhEOTgc_eF6liK1NuKKImCSzlg/s1600/2015-04-28+11.31.57.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqvx-GLF2US_vRWXKo6gerA8SPA6Ab2qzxvbV5NNzon1K2N-faDeUbvhySbQWFx2IFnOgtkClBjGLnaB9pWwXVbrE63JedjneXwBp7EWeLBlRcUuWduhEOTgc_eF6liK1NuKKImCSzlg/s320/2015-04-28+11.31.57.jpg" width="320" /></a></div>
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<br />motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com1tag:blogger.com,1999:blog-7686013339968426344.post-69264089314316481172015-04-24T07:40:00.000-04:002015-04-24T07:42:39.755-04:00Raining...I mean Running..we HOPE!The Rosebuds CF Superheroes will be raining...I mean running this weekend! (Please don't rain). <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNYI2LjycXksHDlEQN5S34Nl-mANU7_J6032jj1qwoPmg4BMCK1L2Ms3fxBjclZnPVQPFtYl3eysnezLiLw-tf68GhaRq_JT-tJidYtGzYEWKcyjq9mmM_2witAwo9IEhaf1fbW6wC1w/s1600/DSCN0385.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNYI2LjycXksHDlEQN5S34Nl-mANU7_J6032jj1qwoPmg4BMCK1L2Ms3fxBjclZnPVQPFtYl3eysnezLiLw-tf68GhaRq_JT-tJidYtGzYEWKcyjq9mmM_2witAwo9IEhaf1fbW6wC1w/s1600/DSCN0385.JPG" height="240" width="320" /></a></div>
11 years ago at this time we held our little gray baby that we thought was slowly slipping away from us because of Cystic Fibrosis. She had already undergone 3 surgeries and was having severe complications. Her kidneys were shutting down, a lung collapsed, her breathing was labored, her intestines were still blocked, and we were numb because if we were not, we would have been unable to stop tears. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLzU2JD7CtaTz8E3VKfdZx9limwHj6sWE1eWC276flpTVaoIucFp4d67wLnQZGNSHlpqYKClQ7EIIUYx2s_vsooHnztiOX3LXbGpMyuj_y1LGc7FiSJK-Sdvq_T9Yc3g8kKBekFLrJ2w/s1600/2015-03-28+09.59.06.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLzU2JD7CtaTz8E3VKfdZx9limwHj6sWE1eWC276flpTVaoIucFp4d67wLnQZGNSHlpqYKClQ7EIIUYx2s_vsooHnztiOX3LXbGpMyuj_y1LGc7FiSJK-Sdvq_T9Yc3g8kKBekFLrJ2w/s1600/2015-03-28+09.59.06.jpg" height="240" width="320" /></a></div>
Here we are 11 years later and her lung function is up higher than it has been in over 2 years!!!!! Donated dollars get us closer to cure for CF. Please consider donating towards our family goal; helping us be a kryptonite to CF! We are $415 away from our $1000 goal! Thank you friends and family for being there in your words, hugs, thoughts, and donations. I'm continuously humbled by the support that comes in ALL sorts of ways. <br />
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<span style="font-size: x-large;">You can donate here: </span><a href="https://www.makeyeshappen.com/Athlete/Profile/7433"><span style="font-size: x-large;">https://www.makeyeshappen.com/Athlete/Profile/7433</span></a></div>
motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-37031219021564098192015-04-18T18:09:00.001-04:002015-04-19T18:37:23.642-04:00One week!<div class="separator" style="clear: both;">One week until Rosebuds race day! We are getting closer to changing lives of those with Cystic Fibrosis and their families "one mile at a time". <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-KS-TxlDE7KQCMyz2_YW-pJ0JC9IXUQClMSlf2NlGv-dQS2Vf7wA9iWgOEpXa0cZfDteb8DkbD_epNj_ERYdMRiHYESWXDYEyL1qTlN4ITCFX1FuntX09UsyT6RLkIiNtTPvTEFYVfg/s640/blogger-image-851850144.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-KS-TxlDE7KQCMyz2_YW-pJ0JC9IXUQClMSlf2NlGv-dQS2Vf7wA9iWgOEpXa0cZfDteb8DkbD_epNj_ERYdMRiHYESWXDYEyL1qTlN4ITCFX1FuntX09UsyT6RLkIiNtTPvTEFYVfg/s640/blogger-image-851850144.jpg"></a></div><div class="separator" style="clear: both;">Elena enjoyed being totally in charge of her Rosebuds table. She sold 9 pairs of her homemade earrings of which profits go towards her CF fundraising efforts at a local race yesterday.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Elena is so brave, strong, inspiring, and energizing!</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMifkcI-ZwLLdS2oXkG5wAwOfl8kBb67ydPW5g5L0IeFdo25MbW4zemQReoC3Qq1obuxxNL_mNjBqxUXjuDnQPf5fvPrnsKiK8dkhb2qMiD1lJUUUOIHqUXq55zAX5v-68V1ZIrkanXg/s640/blogger-image-900943927.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMifkcI-ZwLLdS2oXkG5wAwOfl8kBb67ydPW5g5L0IeFdo25MbW4zemQReoC3Qq1obuxxNL_mNjBqxUXjuDnQPf5fvPrnsKiK8dkhb2qMiD1lJUUUOIHqUXq55zAX5v-68V1ZIrkanXg/s640/blogger-image-900943927.jpg"></a></div><div class="separator" style="clear: both;">I am a proud parent as I see how Elena lives her life selflessly. She is being an excellent example for her 3 younger siblings of how to give of themselves to help others using their talents. As if Elena does not do enough for others, she is now taking on a new project to help others. She is working on her plan so I will wait until she finishes it to share with all of you. Let's just say, she is a Superhero for many reasons.</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlfTvhYaRC0DHqJvExq4JMwvXCVMCDP7ExZjq0BGUt4-OesLu_UlpaHZTAN9uEC5nivmfMAmIKfhZ2CyGSW8jfnJC6VB3nS2TFQT9JmmXqW-4e8eYsgvwdXmANyAzaMt_o7jQliMRSwg/s640/blogger-image-822037184.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlfTvhYaRC0DHqJvExq4JMwvXCVMCDP7ExZjq0BGUt4-OesLu_UlpaHZTAN9uEC5nivmfMAmIKfhZ2CyGSW8jfnJC6VB3nS2TFQT9JmmXqW-4e8eYsgvwdXmANyAzaMt_o7jQliMRSwg/s640/blogger-image-822037184.jpg"></a></div>My greatest reward as a mom is seeing my kids show so much love and understanding to others. They are doing good in this world and changing lives not because they feel they have to or because Mom made them, but because they WANT to. </div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4nuVXlzoQrz-KK5-5WRYeZVw2Ii4y-HFG3vK1AkymCFCn1X5qpwPyP0wg3vCVeCMKu_ss1i7kX3TTV965-ws7C7phTDxIN7Xr5WNxipvdkI0JT846vmCRFIgNxIlY6a9GoYVtHI67Zg/s640/blogger-image-492558038.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4nuVXlzoQrz-KK5-5WRYeZVw2Ii4y-HFG3vK1AkymCFCn1X5qpwPyP0wg3vCVeCMKu_ss1i7kX3TTV965-ws7C7phTDxIN7Xr5WNxipvdkI0JT846vmCRFIgNxIlY6a9GoYVtHI67Zg/s640/blogger-image-492558038.jpg"></a></div>We will be a part of finding a cure for CF so this big girl can continue to be the awesome big sister that she is.</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbr9PcspEQmADBHIKdfUBGV2b8hEoINcAJGUq9ax-ZoYgd1Tugp__WAq55tMEP5jtb1WHKtocv3wqPMrWcvmeAmMDFAiqwMDCTiWqyjSKOa0JOoqPS0P-pIWfNCj1NnDepd90EM45ilQ/s640/blogger-image-1507195265.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbr9PcspEQmADBHIKdfUBGV2b8hEoINcAJGUq9ax-ZoYgd1Tugp__WAq55tMEP5jtb1WHKtocv3wqPMrWcvmeAmMDFAiqwMDCTiWqyjSKOa0JOoqPS0P-pIWfNCj1NnDepd90EM45ilQ/s640/blogger-image-1507195265.jpg"></a></div>Join our cause:</div><div class="separator" style="clear: both;">www.milesforcf.org</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXiNWl1YoMojV11LBBTC2yBC6c2U5Vfj6Y5zWFVyR-uQ7tEIObaKo0MffxX8-8VS1fNP80XECf-ca86tE-D1rk-UTGKvF5ehO3CI9CpVYrVrchD_FQTOGeBfNXKKYEflsilWZ0iBuieA/s640/blogger-image-1182930128.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXiNWl1YoMojV11LBBTC2yBC6c2U5Vfj6Y5zWFVyR-uQ7tEIObaKo0MffxX8-8VS1fNP80XECf-ca86tE-D1rk-UTGKvF5ehO3CI9CpVYrVrchD_FQTOGeBfNXKKYEflsilWZ0iBuieA/s640/blogger-image-1182930128.jpg"></a></div></div></div><div class="separator" style="clear: both;">Our next race is April 25th in Lawrenceville at the Gwinnett Braves Stadium for ages 14 and younger. Distance is 1.2 miles and the cost is only $5!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Join us in "beating CF one mile at a time."</div>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-76038267376313609552015-04-02T23:12:00.001-04:002015-04-02T23:23:40.992-04:00A Sea of CF Superstars!Tonight was a wonderful date night with my oldest boy, Ethan. It began with his selection of my dress, jewelry, jacket, shoes, and even an additional spray of hot pink color on a section of my hair! Then I had specific directions on how to stand and what my face should be doing for our pre-date picture. My little handsome date was wearing his new tux. The kid looked sharp in his tux and Mickey Mouse Converse kicks. Lesson I learned from this; I am no longer in charge of my clothing choices. Ever.<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOK1ugIhMH28ZqI25Op6r63ijnc15GXngkMu8ic1ZBSk7CIEr_0nZbHFim1e5_jLxxGTtFHJ6OHlZ58jh-3yF-4MM_nQfiGs3pdtDszl1-D0sr3VbPVoteNNTcLPqj99SRd8cQyDhxlQ/s640/blogger-image--731684661.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOK1ugIhMH28ZqI25Op6r63ijnc15GXngkMu8ic1ZBSk7CIEr_0nZbHFim1e5_jLxxGTtFHJ6OHlZ58jh-3yF-4MM_nQfiGs3pdtDszl1-D0sr3VbPVoteNNTcLPqj99SRd8cQyDhxlQ/s640/blogger-image--731684661.jpg"></a></div></div><div>It was a special night. We went to celebrate all the volunteers that do so much to help the Atlanta chapter of the Cystic Fibrosis Foundation be the amazing success that it is. We were in a room filled with a sea of CF super stars! It was like walking amongst celebrities. I knew all their names as well as the wonderful things they have done to provide funds that are pushing superfantastic new drugs down the pipeline that will help our Elena and many others like her! Now I had finally bumped shoulders and shaken the hands of these amazing folks plus hugged many long time friends in my fabulous CF family!</div><div><br></div><div>My parents were among the rewarded. Since Elena's birth and diagnosis, my parents have gone above and beyond to make things happen in the CF community. To listen to the presentation for each volunteer and see my parents among the greatest of the great was an honor. Did I cry? You betcha! Ask my dear friends and they will tell you I can't make it through a CF event without many a tear shed.</div><div><br><div>Ethan is the next generation of CF support for people like his big sister Elena. He knows it, too. </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS9D4NiUMQ-Th5C39ryjqqNo9FcxAILuDPrd1qmStEwsnzWzVlXqmaF0fCW2H6WtecN0ZV2E_sPAinlhxRzSYAhoNOuSeoeT_HgbpfHqsKbN6IXvvNi9z8hPYpvu5_srxF-6DdqwxqDQ/s640/blogger-image--756400915.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS9D4NiUMQ-Th5C39ryjqqNo9FcxAILuDPrd1qmStEwsnzWzVlXqmaF0fCW2H6WtecN0ZV2E_sPAinlhxRzSYAhoNOuSeoeT_HgbpfHqsKbN6IXvvNi9z8hPYpvu5_srxF-6DdqwxqDQ/s640/blogger-image--756400915.jpg"></a></div></div><div>While on the car ride home, Ethan was planning his first invention. The conversation went like this:</div><div>"It is going to be a broom like Harry Potter that flies for real. However, I should be the one to test it. Em and EV are too small, You are too heavy (thanks for that kiddo), and Elena already has CF and I don't want her to also have to deal with a broken bone or something. But until I can do that, I think I'll do a parody to a <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Bruno Mars song in my new tux. I'll sing about Cystic Fibrosis for my sister. It will be funny because I look like Bruno Mars and I dance good."</span></div></div><div><br></div><div>Yes, Ethan, if will be funny. Yes, you dance very well. Yes, you will make a difference in this world because you want to help other people.</div><div><br></div><div>Wow, I've got my own little sea of CF Super Stars in my home, with my parents, and among my friends.</div><div><br></div><div>Want to join the sea with me?</div><div><br></div><div>You can donate here: <a href="https://makeyeshappen.com/Athlete/Profile/7433" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">https://makeyeshappen.com/Athlete/Profile/7433</a></div><div><br></div><div>Register your child 14yrs and younger to run a FREE race on April 25th here: <a href="http://milesforcf.org/rosebuds/" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">http://milesforcf.org/rosebuds/</a></div><div><br></div><div>Register yourself for a 10k on Labor Day here: <a href="http://milesforcf.org/sizzler/" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">http://milesforcf.org/sizzler/</a></div><div><br></div><div>Join us in the sea of CF super stars. It feels good; really good.</div><div><br></div>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com1tag:blogger.com,1999:blog-7686013339968426344.post-36116848324201509012015-03-27T12:20:00.001-04:002015-03-27T13:02:41.992-04:00Nugget of WisdomFound these nuggets of wisdom as notes on Elena's school desk:<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglz1n0FVlv-8flVrH2rW48UV4a8ARHb6F-Or5loeXrO6hYlUpXRLA17vPhhE6UbKnrgvXe7hGqkMCNwaaVq3fKBAcvkxhdwSuRj4vGDSmmjOKcPk-HjQnHBYM_wtQ8Ai_2rsVu3XRfzw/s640/blogger-image--2092668479.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglz1n0FVlv-8flVrH2rW48UV4a8ARHb6F-Or5loeXrO6hYlUpXRLA17vPhhE6UbKnrgvXe7hGqkMCNwaaVq3fKBAcvkxhdwSuRj4vGDSmmjOKcPk-HjQnHBYM_wtQ8Ai_2rsVu3XRfzw/s640/blogger-image--2092668479.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0z5JTzBrqmVl6wmxiRy0N7Nu-9wMPn3OTByzxFHlwzKPRPgnruLnu5RGUHUsJX42ebVkdLCnw3a9OP7o_vEmVvZWV2ytmgKLFBNwEvSnkQfXAw09ZGEZOxYr0gVdRl-W_LXOTsbageQ/s640/blogger-image--814636044.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0z5JTzBrqmVl6wmxiRy0N7Nu-9wMPn3OTByzxFHlwzKPRPgnruLnu5RGUHUsJX42ebVkdLCnw3a9OP7o_vEmVvZWV2ytmgKLFBNwEvSnkQfXAw09ZGEZOxYr0gVdRl-W_LXOTsbageQ/s640/blogger-image--814636044.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwE3JYIH4qv_n17HHKRCLchUzQ5tjlKB2vLQeFlQoAozsLAlrNmeVVl5Z4IOiT_iFvaHRqsd_ZiwMmEyzIDEzIOib8Jez_RJjbbLPGFLoAB-xGPyhc4qUkqJF7_sjyJZolxSAVJXgwTA/s640/blogger-image--590700017.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwE3JYIH4qv_n17HHKRCLchUzQ5tjlKB2vLQeFlQoAozsLAlrNmeVVl5Z4IOiT_iFvaHRqsd_ZiwMmEyzIDEzIOib8Jez_RJjbbLPGFLoAB-xGPyhc4qUkqJF7_sjyJZolxSAVJXgwTA/s640/blogger-image--590700017.jpg"></a></div></div></div>My favorite was her own:<br><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAUPeWxQThyzK46EDF6Z0LKX8fajNGu9UnkhX8jVB2kjNg9UlaIORLtE1QNjfzKsjjN5BKfBC_xFboAobOWHb2OS_8btuGE3QfOSPYLPXpPYY-Smu0m3Cjw6wvdtnDGfSdpd6drXo1xQ/s640/blogger-image-539029650.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAUPeWxQThyzK46EDF6Z0LKX8fajNGu9UnkhX8jVB2kjNg9UlaIORLtE1QNjfzKsjjN5BKfBC_xFboAobOWHb2OS_8btuGE3QfOSPYLPXpPYY-Smu0m3Cjw6wvdtnDGfSdpd6drXo1xQ/s640/blogger-image-539029650.jpg"></a></div><div class="separator" style="clear: both;">There is so much meaning to these simple words.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We are so proud of the young women Elena has become. She is mature beyond her years. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This morning she spoke at <span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Viasat’s breakfast</span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> for their Great Strides Kick Off campaign.</span></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilxZcDocABFqu2TuYm1PdHEsxzjhg4b1PHYJg9DGPVh9AUJp9F9YD_NDYWDTA2dPaAq_c1Cc6NqQG_k_RtILABJlthwIgwve0MwIwhEJQEE2Dn9sjvEXCFQ7XbkJRR6nIm6znwYHVRJg/s640/blogger-image--2114932136.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilxZcDocABFqu2TuYm1PdHEsxzjhg4b1PHYJg9DGPVh9AUJp9F9YD_NDYWDTA2dPaAq_c1Cc6NqQG_k_RtILABJlthwIgwve0MwIwhEJQEE2Dn9sjvEXCFQ7XbkJRR6nIm6znwYHVRJg/s640/blogger-image--2114932136.jpg"></a></div>So big, so mature, so strong, so brave...</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwBDNiFxsCMnrg6aUw7Iw12bgVeXaL3JhxBXY8jOvaNTrm1-nyi1qYg5pznS93tVpPYEp62IAZobcdJtKcfwkM24ZURfSFCgDwhiHXukEW9mYvk9f9T8mVNEgsnRYFFGvRCRVLKrvuHw/s640/blogger-image--1896566491.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwBDNiFxsCMnrg6aUw7Iw12bgVeXaL3JhxBXY8jOvaNTrm1-nyi1qYg5pznS93tVpPYEp62IAZobcdJtKcfwkM24ZURfSFCgDwhiHXukEW9mYvk9f9T8mVNEgsnRYFFGvRCRVLKrvuHw/s640/blogger-image--1896566491.jpg"></a></div>She is our own personal nugget of wisdom!</div><br></div></div>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-49702408967141322252015-02-12T21:16:00.001-05:002015-02-12T21:43:44.175-05:00Shhh...you hear that? Nope, me neither.To say we are excited about Elena's new vest is an understatement! <br>
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Today, we got the call that Elena was approved for the new AFFLO Vest and they were delivering it TODAY. <br>
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1. We were unsure about how effective this vest would be considering it is battery operated. <br>
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2. There was much apprehension about a new vest when we already had one that seems to work great. <br>
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3. PLUS, the cost is like buying a car.<br>
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We were won over once Michael from Carmichael's in Monroe arrived. <br>
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1. This vest does not compare to the Hill-Rom vest. AFFLO is a whole new category of it's own. It has programed settings that vary the compression intensity and location. Think like a massage chair.<br>
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2. The vest we have is 6 years old and technology changes. WOW did it change. You can not even hear the AFFLO Vest. Her old vest is so loud that no one can hear anything when Elena does her treatment. All the kids were around listening to the new vest and Ethan said, "So you are doing it right now? Whoaaaaaaa." Keep in mind that all 3 of her siblings have sat in her lap and jiggled themselves to sleep as babies while she did her treatments. They only know the loud familiar noise of the Hill-Rom vest. Also the SIZE! Old vest = giant dinosaur New vest = sleek sports car<br>
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3. Michael heard from the CF community (thanks Eyana:):)) about the many things Elena does for the CF community. They also heard that Elena was saving up her own money to buy an AFFLO vest. The AFFLO manufacturing company and Michael's company worked together to help with the cost. I HAD to hug Michael after this news. Those who know me, know I'm a hugger! <br>
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Elena is SO in love with her new vest. She has already done 4 treatments today and she has only had the vest for 4 hours....she only has to do 2 treatments a day. :) She said that when Michael showed her the remote and explained that she could walk around and do her treatments...she cried a little. We ALL cried a little today!<br>
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Here are a couple of videos to show you how her vest works AND to see how very very quiet it is!<br>
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We thought that Michael would enjoy watching Elena's new CF fundraising video since it involves beating her old vest with a plastic bat. We all had a good laugh as we watched the video again. <br>
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In case you missed it in the last post, here you go:<br>
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This new vest is life changing for Elena. She can now do her treatments on the go. She is no longer tethered to the couch. Since she spends up to 1 and sometimes 2 hours doing treatments, this is extremely exciting! However, the most exciting thing is that she is receiving the latest in chest therapy. <br>
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Hill Rom makes an excellent vest and we are happy we had it, but WOW...we are sold on AFFLO. <br>
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motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-41409084366460040972015-02-10T18:18:00.001-05:002015-02-10T18:18:14.352-05:00Just Send Your Name<div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Our Cystic Fibrosis fundraising could not begin without an awesome video by our CF Superhero. Join our team 65ROSES (walk, run, volunteer) for our March 22nd Marathon/Half Marathon or our team Rosebuds for the 5K that same morning. </span></div><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Sign up at: <a href="http://www.milesforcf.org/">www.milesforcf.org</a></span></div><div style="text-align: center;"><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Make donations for at:</span></div><div style="text-align: start;"><a href="https://www.makeyeshappen.com/Athlete/Profile/7433"></a><a href="https://www.makeyeshappen.com/Athlete/Profile/7433" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000">https://www.makeyeshappen.com/Athlete/Profile/7433</font></a></div></div><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Watch the best parody video of Blank Space EVER below:</span></div><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div class="separator" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/BR6gWQlHqKk/0.jpg" src="http://www.youtube.com/embed/BR6gWQlHqKk?feature=player_embedded" frameborder="0" allowfullscreen=""></iframe></span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>Elena had the best time ever filming this. She said that this is our best fundraising video ever!</span>motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0tag:blogger.com,1999:blog-7686013339968426344.post-4812517269359764652014-12-07T11:34:00.000-05:002014-12-07T11:34:05.478-05:00CF Superheroes Super Success!Thank you to ALL who support our family and our fundraisers in SO many ways! The Rosebuds were all smiles yesterday despite the icky weather. Thank you thank you THANK YOU for the donations that will be helping make Christmas a little less stressful for several of our local families struggling with complications from Cystic Fibrosis. <br />
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May you find joy in helping others this holiday season. Random acts of kindness can go a LONG way.<br />
Merry Christmas and Happy Holidays to ALL!!motherofeshttp://www.blogger.com/profile/06660757508863693324noreply@blogger.com0