tag:blogger.com,1999:blog-32033691966049613132024-03-27T04:29:23.780-07:00Coping With LM, Inc. BlogUnknownnoreply@blogger.comBlogger143125tag:blogger.com,1999:blog-3203369196604961313.post-25203244774341380752018-08-02T08:19:00.000-07:002018-08-02T08:22:36.919-07:006 Ways To Nurture Your Marriage While You Are Coping With LM<div class="separator" style="clear: both; text-align: center;">
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Parents of special needs children have an 80% divorce rate. </div>
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<b>Yes, you read that right...80%. </b></div>
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The constant stress/PTSD, hospital stays, outstanding medical bills and <a href="http://copingwithlmblog.blogspot.com/2017/10/how-to-support-family-who-is-coping.html">lack of help from family and friends</a> can leave a couple wondering if life would be easier apart. </div>
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Parents coping with PTSD may have a <i>very</i> difficult time leaving their child for a date night. </div>
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<i>What if she stops breathing? </i></div>
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<i>What if the babysitter doesn't remember how to turn on her apnea monitor?</i></div>
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And we aren't talking about normal parental worries, we are talking about full-blown panic attacks in the middle of the movie theater. Sadly, almost all parents of moderate to severe airway babies will experience some form of PTSD.</div>
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Then there are the outstanding medical bills and sky-high insurance premiums that leave little to no money at the end of the month for dinner and some drinks. </div>
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<b>So what does a couple do?</b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA9FjKM5Nb-mKojdZ9183yOfs3qBqTStI71sbj0qO5qZciopq4yB_mnWe2NT0Ro97nczCnmyZ2Jjy8tv983U21AB8Gl9NueKqBVqJXPbEeQ4GF9NEZSAGTWK7Jz6LdG7nutEQwwfJU22TA/s1600/6+ways+to+nurture+your+marriage+while+you+are+coping+with+lm.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA9FjKM5Nb-mKojdZ9183yOfs3qBqTStI71sbj0qO5qZciopq4yB_mnWe2NT0Ro97nczCnmyZ2Jjy8tv983U21AB8Gl9NueKqBVqJXPbEeQ4GF9NEZSAGTWK7Jz6LdG7nutEQwwfJU22TA/s640/6+ways+to+nurture+your+marriage+while+you+are+coping+with+lm.png" width="426" /></a></div>
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We asked our parents in <a href="https://www.facebook.com/groups/ParentSupportAtCWL/">Parent Support at Coping With LM</a> what did they do to nurture their marriage while they are coping with LM and here is what they said:</div>
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<b>1. Movie Night-In</b></div>
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Put the kids to bed, turn on the apnea monitor/oxygen and get comfy on the couch together! </div>
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Comcast OnDemand has many free movies. Redbox, Netflix, Hulu, Amazon Video and the local library are other good options. </div>
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Movie recommendation: <a href="https://www.amazon.com/Fireproof-Kirk-Cameron/dp/B001OHS8BQ/ref=sr_1_1?ie=UTF8&qid=1533222386&sr=8-1&keywords=fireproof+movie">Fireproof</a> </div>
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<b>2. Cook Together </b></div>
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Scroll through <a href="https://www.pinterest.com/copingwithlm/pins/">Pinterest</a> and find a new recipe, you both love. </div>
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Maybe some chocolate fondue and fresh strawberries are exactly what the doctor ordered. </div>
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<b>3. In-House Babysitting</b></div>
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Who said you have to LEAVE the house when the babysitter comes? </div>
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Ask a grandparent, sister, brother or home nurse to watch your Pint-Sized Powerhouse in the living room while you and your spouse watch a movie in your bedroom, sit outside by the firepit, or tackle that to-do list together! </div>
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<i>It's about spending time together, not how far away you are from your child.</i> </div>
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<b>4. Go On A Hike</b></div>
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Put the kids in the stroller or baby carrier and go for a hike together. </div>
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You will be surprised what a little sun and fresh air can do for you both! </div>
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<b>5. Find Your Village</b></div>
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Having a hard time finding someone who will watch your Pint-Sized Powerhouse? </div>
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<a href="https://www.facebook.com/groups/ParentSupportAtCWL/">Find another Malacia family</a> in your area and swap babysitting nights. </div>
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<b>6. Read A Book Together</b></div>
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Book recommendation: <a href="https://www.amazon.com/Love-Languages-Secret-that-Lasts/dp/080241270X/ref=sr_1_1?ie=UTF8&qid=1533222310&sr=8-1&keywords=5+love+languages+by+gary+chapman">The 5 Love Languages.</a>*</div>
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*Please use <a href="http://smile.amazon.com/ch/45-2424869">AmazonSmile: Coping With Laryngomalacia</a> when making purchases on Amazon. Thank you so much for your support! </div>
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Unknownnoreply@blogger.com21tag:blogger.com,1999:blog-3203369196604961313.post-26780855801771091592018-03-04T06:31:00.003-08:002018-04-06T14:37:29.347-07:00What You Should Know Before Your Child Has Surgery <br />
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<img border="0" data-original-height="800" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieL1GxSZAPmP92RlnfnqiK19JPOcfsEeqVHDpDFnWxjuFzdSDWcgds-jVtefIEsop4zUFxsHx8HD-WNzru0uDYXNNxc4xaHy_RtnXnQvqzTLDTFdW9QMCdw9rSF8gCTkPB42qFgnWFmqWZ/s640/I+would+tell+them+to+believe+and+have+faith+that+this+is+for+the+best.+Surgery+literally+saved+my+child%2527s+life.+%25281%2529.png" width="640" /></div>
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<span style="font-size: x-large;">Your baby's laryngomalacia is more than '<a href="http://docs.wixstatic.com/ugd/1d6fc5_9d574ec0d6394383a04e96c41ed50574.pdf" target="_blank">just some noisy breathing</a>' and now he/she is headed into the OR. </span></div>
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<span style="font-size: x-large;">You are <a href="http://copingwithlmblog.blogspot.com/2017/10/to-parent-whose-baby-has-just-been.html" target="_blank">scared, overwhelmed and unsure</a>. </span></div>
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<span style="font-size: x-large;"><i>Am I making the right choice? </i></span></div>
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<span style="font-size: x-large;"><i>Will my baby be in pain? </i></span></div>
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<span style="font-size: x-large;"><i>How am I going to hand my baby over to the surgeon? </i></span></div>
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<span style="font-size: x-large;">These thoughts consume you as you try to prepare for what lays ahead. </span></div>
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<span style="font-size: x-large;">In an effort to <a href="http://www.copingwithlm.org/" target="_blank">continue providing support</a> for our families, we have compiled a list of ten things you should know before your child has surgery.</span></div>
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<a href="http://www.copingwithlm.org/" target="_blank"><img border="0" data-original-height="1200" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGb-7LwiRUjbNmNLPQaAK5Vv3kKyDTARgLFfR9FC20z7WmZrUfneRjiMd7tau775XayC4N1lrv_ao_WzdiJvXhSjmw_0pf0wpWCNkwspDuzZ4n-178t8eZjnlKmKqq9C8C1JSaZK6BD-gL/s640/WHAT+YOU+NEED+TO+HEAR+BEFORE+YOUR+BABY+HAS+SURGERY.png" width="426" /></a></div>
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<span style="font-size: x-large;">1. Get A Second Opinion</span><br />
<span style="font-size: x-large;">About <a href="http://docs.wixstatic.com/ugd/1d6fc5_9d574ec0d6394383a04e96c41ed50574.pdf" target="_blank">5% of all babies with laryngomalacia</a> will need a supraglottoplasty. Before signing any pre-op papers, get a second opinion from an ENT who specializes in laryngomalacia AND supraglottoplasy. Find a recommended ENT <a href="http://www.copingwithlm.org/find-an-ent" target="_blank">here</a>.</span><br />
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<span style="font-size: x-large;">2. Understand The Risks And Benefits Of The Surgery</span><br />
<span style="font-size: x-large;"><a href="http://docs.wixstatic.com/ugd/1d6fc5_9d574ec0d6394383a04e96c41ed50574.pdf" target="_blank">Surgical intervention is warranted if a baby has severe laryngomalacia with recurrent apneic events, difficulty with feeding, failure to thrive and recurrent cyanosis and respiratory distress</a>. Some risks are complications from anesthesia, aspiration, and infection.</span><br />
<i><br /></i> <i><span style="font-size: large;">"<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">It was the scariest thing I have ever gone through but I would do it all again in a heartbeat if I had to!"- Jenny</span></span></i><br />
<span style="font-size: large;"><br /></span> <span style="font-size: x-large;">3. Know What Recovery Could Be Like</span><br />
<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: x-large;">Children are transferred to PICU once out of recovery. Recovery normally consists of oxygen via nasal cannula, pain medication (Tylenol to Morphine for severe pain) and IV fluids. Some children will need to be intubated for 24-48 hours due to swelling in the airway. Once discharged, pain management and infection control are the top priorities. </span><br />
<i><span style="background-color: white;"><br /></span></i> <i><span style="font-size: large;"><span style="background-color: white;">"</span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">Prepare to see your infant with lots of monitors and tubes on and in them."- Tarah</span></span></i><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPBTixSFivPAecUdO-7TpCYmG45K5uj0umjYC8hp45yJqAl9yi1479DihkGkBBJ5V-rqWcAK66YTmxu06tYWa0zAdblDvwHRPKEIERzwXq3iXzWBrbiz32GQWAGdjhH-W5aDfxf4Ybn54X/s1600/Sophia+and+Lu.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPBTixSFivPAecUdO-7TpCYmG45K5uj0umjYC8hp45yJqAl9yi1479DihkGkBBJ5V-rqWcAK66YTmxu06tYWa0zAdblDvwHRPKEIERzwXq3iXzWBrbiz32GQWAGdjhH-W5aDfxf4Ybn54X/s320/Sophia+and+Lu.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Baby intubated post supraglottoplasty.</td></tr>
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<i><span style="font-size: large;"><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><br /></span></span></i> <span style="font-size: large;"><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><i><br /></i></span> <i><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">"</span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">She was on oxygen and intubated after her supraglottoplasty. It’s scary, but it will be worth it."- Kelly</span></i></span><br />
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<span style="font-size: x-large;">4. If In The USA, Know Your Health Insurance Hospitalization Policy</span><br />
<span style="font-size: x-large;">Call your insurance company and ask about any deductibles, copays, and deductibles. Also, ask what is their policy of your child receives care from an out-of-network doctor while in the hospital.</span><br />
<span style="font-size: x-large;"><span style="font-size: medium;"><br /></span> <span style="font-size: xx-small;">5. Take A Tour Of The Hospital</span></span><br />
<span style="font-size: x-large;">Pay attention to where the cafeteria is and it's hours. Also, ask about getting a parking pass.</span><br />
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<span style="font-size: x-large;">6. Know The Hospital's PICU Visitation Policy</span><br />
<span style="font-size: x-large;">Most PICU's only allow one parent to stay overnight and only two visitors in the room at a time. Vistors gifts and flowers are usually discouraged. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEKkKNfRYpb4VrWkmbHo4L7iMCZzQONeIYOyi98ANn8SxqdETjhyiIRvvMKp7nbvZSOpDKPGcsUbbXI2h5umJYeb9jJlmH2HPThEbyiLyzcnQDOXDKkHTkk6Mb65YY8ak1Mr-ZDk93PY32/s1600/adelynn+and+lu.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="714" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEKkKNfRYpb4VrWkmbHo4L7iMCZzQONeIYOyi98ANn8SxqdETjhyiIRvvMKp7nbvZSOpDKPGcsUbbXI2h5umJYeb9jJlmH2HPThEbyiLyzcnQDOXDKkHTkk6Mb65YY8ak1Mr-ZDk93PY32/s320/adelynn+and+lu.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Baby and <a href="http://www.copingwithlm.org/store" target="_blank">#LuTheLamb</a> in the hospital.</td></tr>
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<span style="font-size: x-large;"><br /></span> <span style="font-size: x-large;"><br /></span> <span style="font-size: x-large;">7. Know What To Bring To The Hospital</span><br />
<span style="font-size: x-large;">Read <a href="http://copingwithlmblog.blogspot.com/2018/01/what-to-pack-when-your-baby-goes-to.html" target="_blank">this list</a> to know what to bring to the hospital.</span><br />
<i><br /></i> <i><span style="font-size: large;">"<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">Another mom told me to bring Advil, I got a massive headache! Surgery </span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">was delayed until 3:00PM"- Kathleen</span></span></i><br />
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<span style="font-size: x-large;">8. Know You Are Supported And Not Alone</span><br />
<span style="font-size: x-large;">Connect with over 2,500 parents <a href="https://www.facebook.com/groups/ParentSupportAtCWL/" target="_blank">here</a>.</span><br />
<span style="font-size: x-large;">Let family and friends know how they can help <a href="http://copingwithlmblog.blogspot.com/2017/10/how-to-support-family-who-is-coping.html" target="_blank">here</a>.</span><br />
<i><br /></i> <i><span style="font-size: large;">"<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">Stay strong, you will get through it"- Maria</span></span></i><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqSnURqsymC2OGtvZIXaPPZy1xakZP4br1kVCvowGZzWZUpZqfgtU7hibfNwaalaYbuLNZ1czmb_ar1x7Ga36XHUrdxC3W_CZI7Oc6eH8ObG1XjBLLs_5GKqUS9i9C_gobdl4v0L0pxmi5/s1600/cwl+local+line.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="809" data-original-width="1080" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqSnURqsymC2OGtvZIXaPPZy1xakZP4br1kVCvowGZzWZUpZqfgtU7hibfNwaalaYbuLNZ1czmb_ar1x7Ga36XHUrdxC3W_CZI7Oc6eH8ObG1XjBLLs_5GKqUS9i9C_gobdl4v0L0pxmi5/s320/cwl+local+line.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">LM parents at a <a href="http://www.copingwithlm.org/malacia-meet-up-host-application" target="_blank">Malacia Meet-Up</a> in New Jersey. January 20, 2018</td></tr>
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<i><span style="font-size: large;"><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><br /></span></span></i> <span style="font-size: large;"><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><br /></span> <i>"<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">You’ve been so strong and fighting for your child for so long and now your baby is getting the help needed.</span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"> "- Karen</span></i></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglfYfw9x6dvzQ2Tp7PCBobUG26RubcRjwJP5WXVZbk4UJItLOhI6D2wTEUJOw0awSxFLoo1Y9_ZDfMFTFGIuH8EDZlImu69e5JMWJZA2z4Tx4eA0eLLiAy0VEjSnMuj5Q2QlnVInYW3d-p/s1600/I+would+tell+them+to+believe+and+have+faith+that+this+is+for+the+best.+Surgery+literally+saved+my+child%2527s+life..png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglfYfw9x6dvzQ2Tp7PCBobUG26RubcRjwJP5WXVZbk4UJItLOhI6D2wTEUJOw0awSxFLoo1Y9_ZDfMFTFGIuH8EDZlImu69e5JMWJZA2z4Tx4eA0eLLiAy0VEjSnMuj5Q2QlnVInYW3d-p/s640/I+would+tell+them+to+believe+and+have+faith+that+this+is+for+the+best.+Surgery+literally+saved+my+child%2527s+life..png" width="640" /></a></div>
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<span style="font-size: large;">9. Apply Your Child For A Coping With LM Care Package </span><br />
Each care package includes <a href="https://www.instagram.com/explore/tags/luthelamb/" target="_blank">#LuTheLamb</a>, a <a href="http://copingwithlmblog.blogspot.com/2017/08/why-coping-with-lm-asks-for-handmade.html" target="_blank">handmade blanket</a>, hospital gown and other goodies to help comfort your little one. Apply <a href="http://www.copingwithlm.org/program-app" target="_blank">here</a>.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYb2BZyMxJbQgBHDhvm6n9cM0cC-sKSZJAZYm0hGDMEv7BqHdFGQA_ZaN39IgjxAHezMbGW9YoF6LvQiLPEqcWqEukecmhX_IGfgqTf5MNk59AIVn3ONnqAcWLujd81Qo1rmtXPFtq1qT0/s1600/doing+it+for+k.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYb2BZyMxJbQgBHDhvm6n9cM0cC-sKSZJAZYm0hGDMEv7BqHdFGQA_ZaN39IgjxAHezMbGW9YoF6LvQiLPEqcWqEukecmhX_IGfgqTf5MNk59AIVn3ONnqAcWLujd81Qo1rmtXPFtq1qT0/s320/doing+it+for+k.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://copingwithlmblog.blogspot.com/2017/08/why-coping-with-lm-asks-for-handmade.html" target="_blank">Handmade blankets</a> are included in CWL's care packages</td></tr>
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<span style="font-size: large;">10. Know Surgery Does Not Cure LM</span><br />
<a href="http://docs.wixstatic.com/ugd/1d6fc5_9d574ec0d6394383a04e96c41ed50574.pdf" target="_blank">In otherwise healthy babies, most of the time a single supraglottoplasty will improve the airway obstruction caused by laryngomalacia and no further surgery will be needed. Supraglottoplasty has been shown to have over a 90% success rate in healthy children with laryngomalacia. There are times, however, when a second surgery may be needed if your baby is still having symptoms of severe laryngomalacia such as recurrent apneic events, difficulty with feeding or failure to thrive. Studies have shown that this is more common in neurologically delayed children. Up to 70% of children with neurological delay and laryngomalacia may require a revision supraglottoplasty</a>.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR7cSMLrPmN7CA3lx_z0EaudPgmgYKmm1yns2-Bv2af6h5H8l97KY104M0IPPDdYBPd1_p8UjaKkkqhFkMJtQ2vJtSRxDfxNqpzPfwp8prPKDM60s1XivoDgb766wqwaw1b-5lb5D_RjyS/s1600/surviors+cerf.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="816" data-original-width="1056" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR7cSMLrPmN7CA3lx_z0EaudPgmgYKmm1yns2-Bv2af6h5H8l97KY104M0IPPDdYBPd1_p8UjaKkkqhFkMJtQ2vJtSRxDfxNqpzPfwp8prPKDM60s1XivoDgb766wqwaw1b-5lb5D_RjyS/s320/surviors+cerf.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Share and print <a href="https://www.facebook.com/CopingWithLM/photos/a.178813452151305.39732.138719706160680/1412016625497642/?type=3&theater">here.</a></td></tr>
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<br />Unknownnoreply@blogger.com23tag:blogger.com,1999:blog-3203369196604961313.post-28148537130387447052018-01-16T10:08:00.000-08:002018-01-16T10:08:01.574-08:00What To Pack When Your Baby Goes To The Hospital<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;">As many special needs parents know, hospital stays can happen in the blink of an eye or they can be booked for months in advance. Regardless of the urgency of the stay, it's a good idea to have a detailed list of items to pack. From obvious items like a toothbrush and iPhone charger to some not so obvious, an electric hot water settle to make coffee/tea with. </span></div>
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FOR BABY<br />
1. Favorite blanket/lovie<br />
2. Extra pacifiers <br />
3. Bottles and bottle brush<br />
4. Baby formula<br />
5. Snap or two piece pajamas<br />
6. Socks<br />
7. Small toys and books<br />
8. Small crafts for older children<br />
9. DVDs<br />
10. Bouncy seat<br />
11. Baby carrier<br />
12. White noise sound machine<br />
13. Breast pump and supplies<br />
14. List of current medications<br />
15. Fingernail clippers<br />
16. Baby oil / coconut oil to help remove bandage glue<br />
17. Soap, towel and comb<br />
18. Unscented baby lotion<br />
19. #LuTheLamb<br />
20. Baby food and nonperishable snacks, including allergy friendly options<br />
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FOR MOM & DAD<br />
1. iPhone, iPad and laptop chargers<br />
2. Socks and slippers<br />
3. Lip balm<br />
4. Pillow and blanket<br />
5. Cash for vending machine<br />
6. Book<br />
7. DVDs<br />
8. Adult coloring book<br />
9. Reusable coffee/tea cup<br />
10. Advil / Tylenol<br />
11. Women's feminine products<br />
12. Extra clothing including a sweatshirt and pajamas<br />
13. Small dish soap and sponge<br />
14. Notebook and pen<br />
15. Hand sanitizer and sanitizing wipes<br />
16. Shampoo, conditioner, body wash, wash cloth and a bath towel<br />
17. Hair brush, hair ties and make-up<br />
18. Heating pad<br />
19. Batteries<br />
20. Essential oils and diffuser<br />
21. Current project: crochet, knitting etc.<br />
22. Ear plugs and a night mask<br />
23. Vitamins and prescription medication<br />
24. Nonperishable snacks including allergy friendly options<br />
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<br />Unknownnoreply@blogger.com60tag:blogger.com,1999:blog-3203369196604961313.post-36183681531814120242018-01-09T10:22:00.000-08:002018-01-09T10:22:43.811-08:00A Year In Review: 2017<div style="text-align: center;">
<span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="background-color: white;"><b>A Year In Review:</b></span></span></div>
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<span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="background-color: white;"><b>What a wonderful year it has been at Coping With LM! </b></span></span></div>
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif;">Through our <a href="http://www.copingwithlm.org/program-app" target="_blank">Breathe Easy Care Package Program</a>, <b>151</b> babies with life threatening laryngomalacia received a care package for their upcoming procedures; making 2017 CWL's most impactful year yet! </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA97en9N1aeNKHWIAHuGrMOHpLNHjHbreMdEG5cOU3jbFz41OsfJ8aZ8X-3Q3AMlRfUPACyL4rZz0eYGINtKpupsa3PivB7QGVn-QRY4bPPKiWgefUoJsHq3jNhgWpX-S7neocBf912LsF/s1600/adelynn+and+lu.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="714" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA97en9N1aeNKHWIAHuGrMOHpLNHjHbreMdEG5cOU3jbFz41OsfJ8aZ8X-3Q3AMlRfUPACyL4rZz0eYGINtKpupsa3PivB7QGVn-QRY4bPPKiWgefUoJsHq3jNhgWpX-S7neocBf912LsF/s320/adelynn+and+lu.jpg" width="238" /></a></div>
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: Arial, Helvetica, sans-serif;">We gave three $100.00 <a href="http://www.copingwithlm.org/pint-sized-powerhouse-grant-program" target="_blank">Pint-Sized Powerhouse Grants</a> to three very deserving warriors. </span></div>
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<span style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif;">Thanks to our friends at </span><a href="https://chibebe.com/" style="font-family: helvetica, arial, sans-serif;" target="_blank">Chibebe Snuggle Pod USA</a><span style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif;">, 12 babies with laryngomalacia received Snuggle Pods, free of charge and two babies in </span><a href="https://chibebe.com.au/" style="font-family: helvetica, arial, sans-serif;" target="_blank">Australia</a><span style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif;"> received Snuggle Pods. </span></div>
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif;"><span class="text_exposed_show" style="color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif;">We continued our partnership with <a href="https://www.gelmix.com/" target="_blank">Gelmix Thickener</a>, launched our <a href="http://a.co/budSXSI" target="_blank">Amazon Wishlist</a> and joined eBay For Charity. We also </span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">continued our fundraising efforts with</span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"> </span><a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=216747198505486&extragetparams=%7B%22directed_target_id%22%3Anull%2C%22groups_location%22%3Anull%7D" href="https://www.facebook.com/amazonsmile/" style="background-color: transparent; color: #365899; cursor: pointer; font-family: inherit;">Amazon Smile</a><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">,</span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"> </span><a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=199525996762157&extragetparams=%7B%22directed_target_id%22%3Anull%2C%22groups_location%22%3Anull%7D" href="https://www.facebook.com/bravelets/" style="background-color: transparent; color: #365899; cursor: pointer; font-family: inherit;">Bravelets</a><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"> and </span><a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=154465557918805&extragetparams=%7B%22directed_target_id%22%3Anull%2C%22groups_location%22%3Anull%7D" href="https://www.facebook.com/jamberrynails/" style="background-color: transparent; color: #365899; cursor: pointer; font-family: inherit;">Jamberry</a><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">.</span></span></div>
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: 14px;">We graciously accepted donations from Heaven's Healing Hats, </span></span></span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">West Chester University Honors College, </span><span style="background-color: white;"><span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: 14px;">02 Kid Lids, </span></span></span><span style="background-color: white; font-family: "arial"; white-space: pre-wrap;">Fairlington United Methodist Women's Church, </span><span style="background-color: white; font-family: "arial"; white-space: pre-wrap;">Benevity, Wells Fargo, </span><span style="background-color: white; color: #333333; font-family: "calibri"; white-space: pre-wrap;">Virgin Pulse Inc:, </span><span style="font-family: "arial"; white-space: pre-wrap;">Network For Good, LuLaRoe, The Cordish Family Foundation, </span><span style="background-color: white; color: #222222; font-family: "arial"; white-space: pre-wrap;">Fidelity Charitable Fund,</span><span style="font-family: "arial"; white-space: pre-wrap;"> Gracie's Gowns,</span><span style="background-color: white;"><span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: 14px;"> </span></span></span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">Eliana's Collection Nail Polish, </span></div>
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">and The #DoingItFor</span><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">Keiley Project.</span></div>
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">On Sunday, June 11th we created a <a href="https://www.facebook.com/events/474810939532629/" target="_blank">Wave Of Light</a> in memory of Alexander Joseph Andrade Jorgenson who passed away on May 31, 2017 from respiratory failure (Cardiac Arrest) due to complications of tracheomalacia. </span><a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/cwllight4alex" style="background-color: white; color: #365899; cursor: pointer; font-family: helvetica, arial, sans-serif;">#CWLLight4Alex</a><span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"> </span></div>
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">We were humbled by the outpouring support from our donors. Many of you hosted <a href="http://copingwithlmblog.blogspot.com/2017/08/how-to-host-care-package-drive-in-5.html" target="_blank">Care Package Drives</a>; your support and passion for our cause was not only heartwarming, but greatly appreciated. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On July 10, 2017 we all stood together and painted our nails light blue for LM.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On August 6, 2017 CWL Founder & President Stephanie Hueston met with other local families for a New Jersey <a href="http://www.copingwithlm.org/malacia-meet-up-host-application" target="_blank">Malacia Meet-Up</a>.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Also in August, we welcomed volunteer Tarah <span style="background-color: white; color: #1d2129;"> Barreras to the CWL Team! </span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #1d2129;">Tarah's commitment and passion for CWL has been amazing; we are so happy to have her! </span></span></div>
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline;"><span style="font-family: Arial, Helvetica, sans-serif;">CWL Founder & President Stephanie Hueston shared </span><a href="http://copingwithlmblog.blogspot.com/2017/08/why-coping-with-lm-asks-for-handmade.html" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">why CWL asks for handmade blankets</a><span style="font-family: Arial, Helvetica, sans-serif;">, </span><a href="http://copingwithlmblog.blogspot.com/2017/03/10-reasons-why-you-shouldnt-use-store.html" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">10 reasons why you shouldn't use a store bought monitor on a baby with LM</a>, <span style="font-family: Arial, Helvetica, sans-serif;">and how friends can </span><a href="http://copingwithlmblog.blogspot.com/2017/10/how-to-support-family-who-is-coping.html" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">help someone who is coping with laryngomalacia</a><span style="font-family: Arial, Helvetica, sans-serif;"> on the Coping With LM Blog.</span></span></div>
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<a href="http://copingwithlmblog.blogspot.com/2017/10/how-to-support-family-who-is-coping.html" target="_blank"><img border="0" data-original-height="1200" data-original-width="800" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV-sWZVd_xvktBk_orHdbZVG5C-0HwQcPBq6tpfOwH29XjUOV6rzM6ALTIUE5ll1ObC4RGo9ifrFCvMXKk_n4AVUEmk48ab8h72hsRmQt3tsOxP8QmgNDRmxHTb4WF5gYwxh7jwGGpXyXX/s400/how+to+support+a+family+who+is+coping+with+laryngomalacia.png" width="266" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We witnessed how in times of crisis</span></div>
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<span style="text-align: start;"><span style="font-family: "helvetica" , "arial" , sans-serif;">CWL's mission of providing support and strength expanded in 2017 with the launch of the </span><a href="http://www.copingwithlm.org/world-leader-program" style="color: black; font-family: Helvetica, Arial, sans-serif; font-size: medium;" target="_blank">World Leader Program.</a><span style="font-family: "helvetica" , "arial" , sans-serif;"> </span></span><span style="color: black; font-family: "open sans" , sans-serif; font-size: small; text-align: start;">The purpose of the World Leader Program is so newly diagnosed families can connect with "seasoned" parents in their area. </span></div>
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<img border="0" data-original-height="315" data-original-width="560" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE3CknQoU9ACoCNohvMhRWs3fQvbFsflrjW4j9iVhHahyphenhyphenec_MpWla1Q4AYPJBFkZDJBm2PziIVKydityFYVjNAXHup5w4g1puXLItEdFYcZJCN8nWSwPH1SG0-YRneVj_HQxFGxOAGrviE/s400/World+Leader+Program.png" width="400" /></div>
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<span class="text_exposed_show" style="background-color: white; display: inline; font-family: "helvetica" , "arial" , sans-serif;"><a href="http://www.copingwithlm.org/store" target="_blank">#LuTheLamb</a><span style="color: #1d2129;"> traveled the world in 2017, </span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><span style="background-color: white;">helping his Pint-Sized Powerhouses' breathe easy! </span></span></span></div>
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<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><span style="background-color: white; font-family: Arial, Helvetica, sans-serif;">He also attended the Solar Eclipse! </span></span></div>
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<span style="color: #1d2129; font-family: Arial, Helvetica, sans-serif;">With your support, we raised $1,350.54 with our t-shirt fundraiser's </span></div>
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<span style="color: #1d2129; font-family: Arial, Helvetica, sans-serif;">and over $1,200.00 thanks to your Facebook Fundraisers! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #1d2129;">Finally, we humbly received the 2017 Top-Rated Nonprofit Award from </span><a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=19964099705&extragetparams=%7B%22directed_target_id%22%3Anull%2C%22groups_location%22%3Anull%7D" href="https://www.facebook.com/greatnonprofits/" style="color: #365899; cursor: pointer;">GreatNonprofits</a><span style="color: #1d2129;"> and launched our first e-Book, '<i><a href="http://docs.wixstatic.com/ugd/1d6fc5_9d574ec0d6394383a04e96c41ed50574.pdf" target="_blank">When It's More Than Noisy Breathing</a></i>' thanks to the help and support from </span>Dr. Prasad John Thottam D.O., FAAP
Director of Beaumont Children's
Hospital Pediatric Aerodigestive Center </span><span style="font-family: Arial, Helvetica, sans-serif;">and Dr. Suzanne Forman D.O.
Otolaryngologist & Plastic Surgeon.</span></div>
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<span class="text_exposed_show" style="background-color: white; display: inline;"><span style="color: #1d2129; font-family: Arial, Helvetica, sans-serif;">As 2017 comes to a close, I can rest peacefully knowing that with your support </span><a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=138719706160680&extragetparams=%7B%22directed_target_id%22%3Anull%2C%22groups_location%22%3Anull%7D" href="https://www.facebook.com/CopingWithLM/" style="color: #365899; cursor: pointer; font-family: Arial, Helvetica, sans-serif;">Coping With Laryngomalacia, Inc.</a><span style="color: #1d2129; font-family: Arial, Helvetica, sans-serif;"> and #LuTheLamb have fulfilled their missions. Families around the world are supported, strengthened and educated. Thank you for giving, volunteering, supporting and loving CWL... it is because of YOU that we were able to accomplish what we have in 2017. </span></span></div>
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<span style="color: #1d2129;">May you always stay brave,</span></div>
<span style="color: #1d2129;"><div style="text-align: center;">
-Stephanie Hueston, CWL Founder & President </div>
</span><div style="color: #365899; cursor: pointer; text-align: center;">
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</span></span>Unknownnoreply@blogger.com28tag:blogger.com,1999:blog-3203369196604961313.post-45089271740433880532017-10-24T08:34:00.001-07:002017-10-24T08:34:11.388-07:00To The Parent Whose Baby Has Just Been Diagnosed With Laryngomalacia <div dir="ltr">
<em>Dear Friend, </em></div>
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<em>So your baby was just diagnosed with laryngomalacia. Can you pronounce it? Don’t worry, I couldn’t either. In fact, it took me three months to learn the correct pronunciation and spelling. </em></div>
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<em>In time you will be able to spell it backwards. You will know more about this airway disorder than you ever thought possible. You will become someone we like to call a Malacia Mom (or Dad!). You will wear this title will honor. It will be a source of strength in the darkest of moments...a reminder that you CAN and WILL get through this. </em></div>
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<em>Having a baby with an airway disorder may be one of the hardest journeys you will ever have to walk. And that’s okay. Do not be angry at this journey, it is here to teach you. Let it teach you. If you allow, the journey will provide you with a whole new view on life. A more simple, wholehearted , grateful for every breath kind of view. </em></div>
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<em>Journeys have no end...do not spend your journey full of anger...instead, spend your time focusing on the walk. Soak in the sunlight wherever possible, remain graceful when your heart is full of worry and always be kind... your journey is hard, that we know but someones journey may be even harder. </em></div>
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<em>Friends will leave and friends will come. Friends will leave because it is their time to leave, not because their intent is to hurt you. Take a deep breath and let them go as beautifully as you let them in. New friends will arrive with hearts wide open. They will know how important a hug and a hot, home cooked meal is. Hug them back, tightly. Be thankful for the future with them. </em></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir_cUVIQx6TqVWxmvn0TN9jk1nk2Fgt-RvQnz6e0Tnc1KwMsRpzh-wi0ZcgmADWO15fqe-_XZdfYGxeF-pJMbp3VEhK6wqvZU7hu0yQiAe_EtOneOXQ6WDFSLAeXTr94K0ZbVoEM5SzVBD/s1600/how+to+take+betterfamily+vacationpictures+%25284%2529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir_cUVIQx6TqVWxmvn0TN9jk1nk2Fgt-RvQnz6e0Tnc1KwMsRpzh-wi0ZcgmADWO15fqe-_XZdfYGxeF-pJMbp3VEhK6wqvZU7hu0yQiAe_EtOneOXQ6WDFSLAeXTr94K0ZbVoEM5SzVBD/s640/how+to+take+betterfamily+vacationpictures+%25284%2529.png" width="426" /></a></div>
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<em>Your partner, he (she) is scared. In fact, he is very scared. That anger he is showing? That is him letting you know all those emotions you are feeling, he is feeling them too. It kills him to see you hurt like this... and there are no words to describe the pain HE feels seeing his baby struggle like this. Let him know how you feel and what you need. He doesn’t know what to do. He never thought he would have a baby with an airway disorder. You both can survive this but if he chooses to disconnect and walk away, let him. Holding onto a relationship when its time for it to end will only fill you of anger, bitterness and resentment. Your baby needs ALL of you right now. You will be okay. You will recover. </em></div>
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<em>You will grieve. Grief comes in all shapes and sizes and it always seems to hit you when your standing in line at the food store. Allow yourself to grieve for the healthy baby you were not given. This is a normal process ... do not let anyone tell you different. </em></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibJXIwZ5cCX9BDXfvxBebqTmJOvvdmBHsX_f0fwPeSHEJQa2OZg9v3TtUQbsYmk2NW0Ye5kPe2FDpS5olr7E71vP7Mj1NCLebuFkIdFqFQPM8LFlsy7g8du9tiUBEG85nhigOyc1SE9edK/s1600/Stephanie%252C+if+it+weren%2527t+for+this+group+you+created+and+the+moms+who+pushed+me+to+trust+my+instincts%252C+I+am+pretty+sure+my+s+%252816%2529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibJXIwZ5cCX9BDXfvxBebqTmJOvvdmBHsX_f0fwPeSHEJQa2OZg9v3TtUQbsYmk2NW0Ye5kPe2FDpS5olr7E71vP7Mj1NCLebuFkIdFqFQPM8LFlsy7g8du9tiUBEG85nhigOyc1SE9edK/s640/Stephanie%252C+if+it+weren%2527t+for+this+group+you+created+and+the+moms+who+pushed+me+to+trust+my+instincts%252C+I+am+pretty+sure+my+s+%252816%2529.png" width="640" /></a></div>
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<em>Listen to your instinct. You know your baby better than any monitor or medical test. Let your voice be heard and if a doctor speaks over you--find a new doctor. Get to the best hospital. </em></div>
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<em>Bills can be paid later, your child needs to breathe now. </em></div>
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<em>Walk this journey with grace. There are going to be some high, high mountains to climb and the rain will pour... choose to let the good strengthen you while letting the bad empower you. Every step you take on this journey will leave footprints your Pint-Sized Powerhouse will follow. Show your child there is always a reason to have a Hope...anger doesn’t make life changing decisions and the good always follows the bad.</em></div>
<em>You are an Malacia Mom (or Dad) for a reason... stay brave and breathe. </em><br />
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<em>Written by: <u><a dataquery="#Link1dt0" href="https://www.blogger.com/null">CWL Founder & President Stephanie Hueston</a></u>. </em>Unknownnoreply@blogger.com32tag:blogger.com,1999:blog-3203369196604961313.post-56585327575023816642017-10-23T16:33:00.000-07:002017-10-23T17:21:11.428-07:00How To Host A Malacia Meet-Up With Coping With LM<span style="font-size: large;">Thanks to modern technology, we are able to connect with each other from miles away. While online support can be poignant, little compares to meeting another parent who is walking the same journey as you! </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgstsHvkwUvoGzM-rCAfu5the71c_mp6OYUF9cfXnUgkhQ_nB98Xvc4RC2q9FgXKBGwVqQnFmgxCkigjxvH2JyxsmfF1RZat0jP6A4WVWfYJ7vXnrBe76F4eIXGDawPG5_4vHXeN5X5qdJa/s1600/AirwayDD3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="453" data-original-width="574" height="315" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgstsHvkwUvoGzM-rCAfu5the71c_mp6OYUF9cfXnUgkhQ_nB98Xvc4RC2q9FgXKBGwVqQnFmgxCkigjxvH2JyxsmfF1RZat0jP6A4WVWfYJ7vXnrBe76F4eIXGDawPG5_4vHXeN5X5qdJa/s400/AirwayDD3.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Illinois Malacia Meet-Up</td></tr>
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<span style="font-size: large;">The purpose of Coping With Laryngomalacia, Inc.'s <a href="http://www.copingwithlm.org/malacia-meet-up-host-application" target="_blank">Malacia Meet-Up Program</a> is so parents (and caregivers) can connect directly with other local families. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">This program is made possible thanks to our amazing <a href="http://www.copingwithlm.org/world-leader-program" target="_blank">World Leaders Volunteers</a> and their <b>passion</b> for the cause! </span><br />
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<b><span style="font-size: x-large;"><br /></span></b>
<b><span style="font-size: x-large;">Want to host your own <a href="http://www.copingwithlm.org/malacia-meet-up-host-application" target="_blank">Malacia Meet-Up</a>? Follow these easy steps! </span></b><br />
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<span style="font-size: large;">Step 1. Apply (<a href="http://www.copingwithlm.org/contact" target="_blank">here</a>) to become a <a href="http://www.copingwithlm.org/world-leader-program" target="_blank">World Leader Volunteer</a> at Coping With Laryngomalacia, Inc. </span><br />
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<span style="font-size: large;">Step 2. Once you become a World Leader, choose a location, date and time for your Malacia Meet-Up.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid3EJUinEWUH3LXSYf-sjzg2mTikDHmGnNE7Cfzgnqje30EArLHsg-jFuN7glzmhzlie83ursZ1Sqet5B-AAapca_O-NP30V-eaMo2yNXmoAu2pwQfW33ei-C_TLh0W23MyTSVmzVNPjpS/s1600/fun+themes+for.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid3EJUinEWUH3LXSYf-sjzg2mTikDHmGnNE7Cfzgnqje30EArLHsg-jFuN7glzmhzlie83ursZ1Sqet5B-AAapca_O-NP30V-eaMo2yNXmoAu2pwQfW33ei-C_TLh0W23MyTSVmzVNPjpS/s1600/fun+themes+for.png" /></a></div>
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<span style="font-size: large;">Step 3. Submit a Malacia Meet-Up application (<a href="http://www.copingwithlm.org/malacia-meet-up-host-application" target="_blank">here</a>) to Coping With Laryngomalacia, Inc. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2fgELRRQcOOOCDur_MDbJ1pWbIWzjM3U58DwHMsKNcz55FRfT6cXArDh8bG-c0d8sPwBXNZP2XSKalcfhru42JpdpuOiL6t2MVRfVKMErr3hlYqTEVx2Py7EpUgb5VWJsPxDiGVbpzYy-/s1600/how+to+take+betterfamily+vacationpictures+%25283%2529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2fgELRRQcOOOCDur_MDbJ1pWbIWzjM3U58DwHMsKNcz55FRfT6cXArDh8bG-c0d8sPwBXNZP2XSKalcfhru42JpdpuOiL6t2MVRfVKMErr3hlYqTEVx2Py7EpUgb5VWJsPxDiGVbpzYy-/s640/how+to+take+betterfamily+vacationpictures+%25283%2529.png" width="426" /></a></div>
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<span style="font-size: large;">Step 4. Once approved, Coping With Laryngomalacia, Inc. will create a <a href="https://www.facebook.com/CopingWithLM/" target="_blank">Facebook</a> Event and invite <a href="https://www.facebook.com/groups/ParentSupportAtCWL/" target="_blank">Parent Suppor</a><u>t</u> members. </span><br />
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<span style="font-size: large;">Step 5. Receive coaching and support: </span><br />
<span style="font-size: large;">Coping With Laryngomalacia, Inc. will provide one to one coaching on how to host a successful <a href="http://www.copingwithlm.org/malacia-meet-up-host-application" target="_blank">Malacia Meet-Up</a>! </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC1L41HrsZWIzjnOQ4JWII47bSvwY6On4S6iKNxy6NOu66dDk7IhEs-BthIlt-0i2p_vdUHRAPivT8CQHWdxyGmqTJAK6LSFDRK8i_mnpekyEf2p4OQ_OAtCzQcLm8sfsI03v7Z7-7jPM8/s1600/meetup.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="414" data-original-width="460" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC1L41HrsZWIzjnOQ4JWII47bSvwY6On4S6iKNxy6NOu66dDk7IhEs-BthIlt-0i2p_vdUHRAPivT8CQHWdxyGmqTJAK6LSFDRK8i_mnpekyEf2p4OQ_OAtCzQcLm8sfsI03v7Z7-7jPM8/s400/meetup.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">New Jersey Malacia Meet-Up<br />
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<br />Unknownnoreply@blogger.com47tag:blogger.com,1999:blog-3203369196604961313.post-15156134444949432342017-10-22T17:18:00.004-07:002017-10-24T11:36:19.374-07:00How To Support A Family Who Is Coping With Laryngomalacia<div>
<span style="font-size: large;">You are scrolling through your news feed and see a post from an old friend, her baby was just diagnosed with a life threatening airway disorder. Her eight week old is now having emergency airway surgery.</span></div>
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<span style="font-size: large;">Your son just called you at work </span><span style="font-size: x-small;">(something he never does)</span><span style="font-size: large;">, the doctor just prescribed your grandchild an apnea monitor. The medical supply company will be delivering it tonight. </span></div>
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<span style="font-size: large;">You're babysitting your niece for the first time. She is choking with every feed, her <a href="http://docs.wixstatic.com/ugd/1d6fc5_9d574ec0d6394383a04e96c41ed50574.pdf" target="_blank">stridor</a> is so loud despite position changes- how does your sister cope with this?</span></div>
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<span style="font-size: large;">Since there is no prenatal test for laryngomalacia (<a href="http://docs.wixstatic.com/ugd/1d6fc5_9d574ec0d6394383a04e96c41ed50574.pdf" target="_blank"><span style="background-color: white; color: #222222; font-family: "roboto" , "arial" , sans-serif;">Polyhydramnios</span> may be a marker though</a>), every family who receives the diagnosis of mild to life threatening laryngomalacia world is turned upside down. </span></div>
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<span style="font-size: large;">Feeding difficulties to blue spells to major airway surgery, </span></div>
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<span style="font-size: large;"><i>these parents are in desperate need of love and support</i>. </span></div>
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<b><span style="font-size: x-large;">So what can you do to help? </span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Stephanie says</span><span style="font-size: large;">, "</span><span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: large;">Offer to bring food or help clean the house. Be a listening ear."</span></div>
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<span style="font-size: large;"><span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">Tiffany says, "</span><span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">Not come around when you have or have been exposed to illness (yes, this is a problem), wash your hands before touching baby, don’t smoke before being around baby."</span></span></div>
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<span style="font-size: large;"><span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">Erica says, "</span><span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"> </span><span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-family: inherit;"><span data-ft="{"tn":"K"}" style="font-family: inherit;"><span class="UFICommentBody" style="font-family: inherit;"><span style="font-family: inherit;">Just ask. My support needs are different each day."</span></span></span></span></span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-family: inherit;"><span data-ft="{"tn":"K"}" style="font-family: inherit;"><span class="UFICommentBody" style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-size: large;"><br /></span></span></span></span></span></span></div>
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<span style="font-size: large;"><span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-family: inherit;"><span data-ft="{"tn":"K"}" style="font-family: inherit;"><span class="UFICommentBody" style="font-family: inherit;"><span style="font-family: inherit;">Erin says, "</span></span></span></span></span><span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">Please get CPR/First Aid Certified."</span></span></div>
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<tr><td class="tr-caption" style="text-align: center;">copingwithlm.org</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: #f6f7f9; color: #1d2129;">Lisa says, "</span><span style="background-color: #f6f7f9; color: #1d2129;">Ask about doctor appointments and offer to watch the siblings."</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: #f6f7f9; color: #1d2129;">Trisha says, "</span><span style="background-color: #f6f7f9;"><span style="color: #1d2129;">A friend paid to have our carpets and air ducts professionally cleaned and changed all our air filters when we were at the hospital. So we came home to the cleanest air possible. It was something Id never had thought to do. I felt it was very thoughtful."</span></span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: #f6f7f9;"><span style="color: #1d2129;"><br /></span></span></span>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: medium;"><span style="background-color: #f6f7f9;"><span style="color: #1d2129; font-size: x-large;">Sponsor a care package <a href="http://www.copingwithlm.org/howtohelp" target="_blank">here</a>.</span></span></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1600" data-original-width="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSGl17uuzV8crgq_xhWllRzRyH-Pw3lMQ8uZV84IqMXCdkhYUOsa7Ww0ahBZ_lll_eN5CcrfwqXh_3btkOtXlRZ0p-duuqSV-cUUSbfCrRAN-CGUc6JP9mPJ_QWdRzRqCF-dLGbKd55lNv/s1600/Love+is+a+much+needed+emotion+in+today%25E2%2580%2599s+world+and+it+is+always+welcomed.+It+is+a+great+way+of+cashing+in+on+your+own+mora+%25283%2529.png" style="margin-left: auto; margin-right: auto;" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">copingwithlm.org</td></tr>
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Unknownnoreply@blogger.com294tag:blogger.com,1999:blog-3203369196604961313.post-43344160647465983082017-08-23T10:57:00.003-07:002017-08-23T11:01:35.987-07:00How To Host A Care Package Drive In 5 Easy Steps! <div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: x-large;">How To Host A Care Package Drive </span><span style="font-size: x-large;">For </span><span style="font-size: x-large;">Coping With LM </span><span style="font-size: x-large;">In 5 Easy Steps! </span></div>
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<b><span style="font-size: x-large;"><u>Step 1 </u></span></b></div>
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<b><span style="font-size: x-large;">Choose your reason</span></b></div>
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<span style="font-size: large;">Pint-Sized Powerhouse Birthday Party</span></div>
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<span style="font-size: large;">Supraglottoplasty Anniversary / Survivors Party</span></div>
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<span style="font-size: large;">In memory of your Pint-Sized Powerhouse</span></div>
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<span style="font-size: large;">Just because </span></div>
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<b>Graphics to use:</b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVDA8J5Ht3NCqUlWYJJ5RpnDHSJY_Xb8LRh7JBcphj45YwqcIyi-Mp8M9TUREm4nhhMOGHhrax-tlO5S_Ih9PGMvNWvScQr4xfczsVO8tXnMWKVIDJyTOYSXGr9fF_k_Iy_bnTa51E4oc3/s1600/So+much+celebrate+%25281%2529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVDA8J5Ht3NCqUlWYJJ5RpnDHSJY_Xb8LRh7JBcphj45YwqcIyi-Mp8M9TUREm4nhhMOGHhrax-tlO5S_Ih9PGMvNWvScQr4xfczsVO8tXnMWKVIDJyTOYSXGr9fF_k_Iy_bnTa51E4oc3/s640/So+much+celebrate+%25281%2529.png" width="426" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHFDtbQtx2vUk-9tnGL06sI4Qmm4fWJPUicfZ6I1SmxHJxiWq38T578uXaL1EgfDUYjZ1BjkhEl4kCGsilXZQsNcbKIWACRUmyE2lmBKhtM3L_sMlTNrwdTHmXotEM6ElNEyAU8FKTeQFJ/s1600/Coping+With+laryngomalacia%252C+inc..png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="816" data-original-width="1056" height="494" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHFDtbQtx2vUk-9tnGL06sI4Qmm4fWJPUicfZ6I1SmxHJxiWq38T578uXaL1EgfDUYjZ1BjkhEl4kCGsilXZQsNcbKIWACRUmyE2lmBKhtM3L_sMlTNrwdTHmXotEM6ElNEyAU8FKTeQFJ/s640/Coping+With+laryngomalacia%252C+inc..png" width="640" /></a></div>
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<b><span style="font-size: x-large;"><u>Step 2 </u></span></b></div>
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<b><span style="font-size: x-large;">Send invites, </span></b></div>
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<b><span style="font-size: x-large;">include Coping With LM's Wishlist</span></b></div>
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<span style="font-size: large;">All donations are tax deductible.</span></div>
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<span style="font-size: large;">Monetary donations can be made at copingwithlm.org</span></div>
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<span style="font-family: inherit; font-size: large;"><b>Helpful tip:</b></span></div>
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<span style="font-family: inherit; font-size: large;"><i>When collecting donations, be sure to include each donors name and mailing address with a list of items donated so Coping With LM can personally thank them! </i></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u><br /></u></b></span></div>
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<span style="font-family: inherit; font-size: large;"><u>How To Help resource page, found <a href="http://www.copingwithlm.org/howcanihelp" target="_blank">here</a>.</u></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhn5e5g-EJJgEHb5g2dSaMCdacDtCVDAQjHArd0n04Vrt2MYPT0rPkaYRDI_ZpcPSJHk2DfJRFtskRPOGrmsgsZklKKz6njn8QeO-hWeDQJOX6uAtPutkMJ-ZvjNvpGzj-giCIitfCkcvw/s1600/Donations+Needed%2521.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhn5e5g-EJJgEHb5g2dSaMCdacDtCVDAQjHArd0n04Vrt2MYPT0rPkaYRDI_ZpcPSJHk2DfJRFtskRPOGrmsgsZklKKz6njn8QeO-hWeDQJOX6uAtPutkMJ-ZvjNvpGzj-giCIitfCkcvw/s640/Donations+Needed%2521.png" width="640" /></a></div>
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<span style="font-size: large;"><b>Jenna says, </b></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: large;"><i>"I've asked people to check in with their crafter friends. </i></span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: large;"><i>I've received gorgeous handmade things for drives from family members of my friends looking for a reason to knit/crochet/sew."</i></span></span></div>
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Amazon Wishlist, found <a href="http://a.co/hN4AKfr" target="_blank">here</a>.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3bvLjqSUTIsWzBUMTZLQ_GmZHsihDU_uBtIqR9onnr0Pk1uYHj21iVq7xUpgulnQdHOZgDF_8H7FOLM949rfRfewm_Rn_m2MSyYE2y3s-NFe2iLsNn9nDeRB63AByxpSumQbrzX6jIaa9/s1600/Why+Coping+With+LM+Asks+For+HandmadeBlankets.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3bvLjqSUTIsWzBUMTZLQ_GmZHsihDU_uBtIqR9onnr0Pk1uYHj21iVq7xUpgulnQdHOZgDF_8H7FOLM949rfRfewm_Rn_m2MSyYE2y3s-NFe2iLsNn9nDeRB63AByxpSumQbrzX6jIaa9/s640/Why+Coping+With+LM+Asks+For+HandmadeBlankets.png" width="426" /></a></div>
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Full blog post, found <a href="http://copingwithlmblog.blogspot.com/2017/08/why-coping-with-lm-asks-for-handmade.html" target="_blank">here</a>.</div>
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<span style="font-size: x-large;"><u>Step 3 </u></span></div>
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<span style="font-size: x-large;">Collect donations, </span></div>
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<span style="font-size: x-large;">educate donors on airway disorders and </span></div>
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<span style="font-size: x-large;">how Coping With LM helps families cope.</span></div>
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<b>Graphics to use:</b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisDTr2clvm7YD2H3NL04SIymnrXMLEv_KX577kC5jurkbQvZ-GOfbviCb-q66cmduhvpgFlU45GvFKm0lfeSLYJRYwOHSOa96AiIO-HUbNWUmkeQcs9SsvqMkDWtkJ3dVovWC0K9ADasNZ/s1600/8+misDx.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="384" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisDTr2clvm7YD2H3NL04SIymnrXMLEv_KX577kC5jurkbQvZ-GOfbviCb-q66cmduhvpgFlU45GvFKm0lfeSLYJRYwOHSOa96AiIO-HUbNWUmkeQcs9SsvqMkDWtkJ3dVovWC0K9ADasNZ/s640/8+misDx.png" width="256" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyB7MSF0WoDQkY523mWvt-REA5Jh9NwPtdubLjPj3JqhzawJTu-S_0EfR42l2wbL5TonzuoTedgJXjNisfK7QK5bU8UlW_FM2vhR9TGZ5EeL2axjKdLrtVg6nS3SfBV07Un7EF-zNujHrq/s1600/Love+is+a+much+needed+emotion+in+today%25E2%2580%2599s+world+and+it+is+always+welcomed.+It+is+a+great+way+of+cashing+in+on+your+own+mora+%25281%2529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="640" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyB7MSF0WoDQkY523mWvt-REA5Jh9NwPtdubLjPj3JqhzawJTu-S_0EfR42l2wbL5TonzuoTedgJXjNisfK7QK5bU8UlW_FM2vhR9TGZ5EeL2axjKdLrtVg6nS3SfBV07Un7EF-zNujHrq/s640/Love+is+a+much+needed+emotion+in+today%25E2%2580%2599s+world+and+it+is+always+welcomed.+It+is+a+great+way+of+cashing+in+on+your+own+mora+%25281%2529.png" width="256" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8zLxPye_lcttrCnGPLIXhN65KSqJRkcnP1NKsLxVs3E2vc51Do2_RHnsH-ZzYdshyp4N-FY4kwMrjyuyO4MNNSa_ed2wQIGgLLw_1FMnIA0VwLpvSK6dKndBS3naR7yg0wl4gCujAYscz/s1600/Coping+With+LM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="640" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8zLxPye_lcttrCnGPLIXhN65KSqJRkcnP1NKsLxVs3E2vc51Do2_RHnsH-ZzYdshyp4N-FY4kwMrjyuyO4MNNSa_ed2wQIGgLLw_1FMnIA0VwLpvSK6dKndBS3naR7yg0wl4gCujAYscz/s640/Coping+With+LM.png" width="256" /></a></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2N4YQqE5E9CURFyc7FJgF4bamLj1h_9dvgL9f5JDPK77MI5K3exC0OXpxGlCNnyHsnQyHBKy1cwFlkBLuCAcQRuQU9n-VJWgu2KEzdLA2FKwCIduWeGhG8ZelSCZFht6Lm-ihoEAXmobZ/s1600/book+headshot.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="315" data-original-width="315" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2N4YQqE5E9CURFyc7FJgF4bamLj1h_9dvgL9f5JDPK77MI5K3exC0OXpxGlCNnyHsnQyHBKy1cwFlkBLuCAcQRuQU9n-VJWgu2KEzdLA2FKwCIduWeGhG8ZelSCZFht6Lm-ihoEAXmobZ/s400/book+headshot.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Free Coping With LM e-Book, found <a href="http://docs.wixstatic.com/ugd/1d6fc5_9d574ec0d6394383a04e96c41ed50574.pdf" target="_blank">here</a>.<br />
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<span style="font-size: large;"><br /><a href="https://greatnonprofits.org/org/coping-with-laryngomalacia-inc" target="_blank">Read reviews of Coping With LM on Great Nonprofits! </a></span></td></tr>
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<span style="font-size: x-large;"><u>Step 4</u></span></div>
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<span style="font-size: x-large;">Gather all donated items and post a picture on social media, be sure to tag Coping With LM!</span></div>
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Coping With LM can be found on Facebook, Instagram, Twitter and Pinterest.</div>
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<span style="font-size: large;"><b>Jenna says,</b></span></div>
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<i><span style="font-size: large;">"<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;">When I get a donation I post pictures of it. It's a natural way to mention the Care Package Drive again and it's a nice acknowledgement for the people helping out."</span></span></i></div>
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<i><span style="font-size: large;"><span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><br /></span></span></i></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: x-large;"><u>Step 5</u></span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: x-large;">Send items to Coping With LM and feel good knowing YOU made a difference!</span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: large;">All donations can be mailed to:</span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: large;">Coping With LM</span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: large;">PO Box 313</span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: large;">Port Monmouth, NJ 07758</span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: large;">USA</span></span></div>
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<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwbBrw_840Pfjh0aU5kUaxC_gVy9q1rScmFY8bG5H_K1WYlaou1oi7MSN0ZxnxfVSIGiuaKAyKB8Mjy9xwM9tLgtO80Cafxh2v-KDk3hnRhReXTm1TzKu7KS_PiBOMcUk793XOXA2-17_X/s1600/LM-LOGO.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="263" data-original-width="277" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwbBrw_840Pfjh0aU5kUaxC_gVy9q1rScmFY8bG5H_K1WYlaou1oi7MSN0ZxnxfVSIGiuaKAyKB8Mjy9xwM9tLgtO80Cafxh2v-KDk3hnRhReXTm1TzKu7KS_PiBOMcUk793XOXA2-17_X/s1600/LM-LOGO.gif" /></a></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129;"><span style="font-size: x-large;"><span style="font-family: "verdana" , sans-serif;">Thank you so much for your support!</span><span style="font-family: "helvetica" , "arial" , sans-serif;"> </span></span></span></div>
<br />Unknownnoreply@blogger.com15tag:blogger.com,1999:blog-3203369196604961313.post-15264690036583138932017-08-02T18:47:00.002-07:002017-08-02T18:49:36.690-07:00Why Coping With LM Asks For Handmade Blankets<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It was June of 2010, somewhere in the middle of the night and early morning. I sat at my computer, starring into the computer screen. A handful of tabs were opened, laryngomalacia-supraglottoplasty-surgery for an infant-what to pack for a hospital stay. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Earlier that day, I signed the pre-op papers for my four month old daughter to have airway surgery. She had <a href="http://docs.wixstatic.com/ugd/1d6fc5_9d574ec0d6394383a04e96c41ed50574.pdf" target="_blank">life threatening laryngomalacia</a>, severe apnea, GERD, bradycardia, left ventricular hypertrophy and feeding difficulties that left her gasping for every breath. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>Medical intervention was needed and it was needed as soon as possible</b>. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4fJesP1DhuqXnwDd4m08sH22D_O9-VItCyBuY6n9ErCF9fZ1XjvifXqVOu97HucyJuTMjH_IzWPA-beb8sxoXImV76X_rcMi9DXDCR8R51Je2v8hQE9Jv3uBeO-WhGd3wRG5FDuoHQdYU/s1600/Why+Coping+With+LM+Asks+For+HandmadeBlankets.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4fJesP1DhuqXnwDd4m08sH22D_O9-VItCyBuY6n9ErCF9fZ1XjvifXqVOu97HucyJuTMjH_IzWPA-beb8sxoXImV76X_rcMi9DXDCR8R51Je2v8hQE9Jv3uBeO-WhGd3wRG5FDuoHQdYU/s640/Why+Coping+With+LM+Asks+For+HandmadeBlankets.png" width="426" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Stridor filled our house. Loud and forceful then somehow comforting; at least I knew she was breathing.The lump in the throat and tightness in my chest was a constant reminder of what lay ahead, the thought of laying my baby into the arms of a surgeon made me physically ill. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9sfjmn6ihsaqj6FkUe2EEM5RDpfiLY7SKixPHAPjMjSGLWmmV19oM0tqauBRB7WK1lLeEdB55xfaAafvyt3dPYqMkm_dAVUWAfp8ePnE3EOquVv1fLGTv79sfUrTLBkLDbdGsXaOZs4RU/s1600/Stephanie%252C+if+it+weren%2527t+for+this+group+you+created+and+the+moms+who+pushed+me+to+trust+my+instincts%252C+I+am+pretty+sure+my+s+%252810%2529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9sfjmn6ihsaqj6FkUe2EEM5RDpfiLY7SKixPHAPjMjSGLWmmV19oM0tqauBRB7WK1lLeEdB55xfaAafvyt3dPYqMkm_dAVUWAfp8ePnE3EOquVv1fLGTv79sfUrTLBkLDbdGsXaOZs4RU/s640/Stephanie%252C+if+it+weren%2527t+for+this+group+you+created+and+the+moms+who+pushed+me+to+trust+my+instincts%252C+I+am+pretty+sure+my+s+%252810%2529.png" width="640" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I knew I couldn't change what was about to happen but I could do my best to make her comfortable. I spent hours searching online for a blanket, I wanted it to be soft and warm. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>I wanted her to feel wrapped in love and strength</b>. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Would a Carter's blanket hold the same significance? If I purchased a blanket from Etsy, would the seller know my baby was about to have life saving airway surgery? Could he/she even pronounce laryngomalacia?</span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOAVjXbpQM_gZBfiofWz_sz4coVVFq3PiwpcMfKcuCsVJaNMxQTXCCgWwgHZwmoGGndDJtlfB5mk6nY5r8Osi1Hx9mPHKulifsNVHuV49mmVa6oQ3_k7gbk2aVdhdQrH7sF3jExOMIPB35/s1600/elephant+blankets.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="960" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOAVjXbpQM_gZBfiofWz_sz4coVVFq3PiwpcMfKcuCsVJaNMxQTXCCgWwgHZwmoGGndDJtlfB5mk6nY5r8Osi1Hx9mPHKulifsNVHuV49mmVa6oQ3_k7gbk2aVdhdQrH7sF3jExOMIPB35/s400/elephant+blankets.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Handmade blankets that were donated to Coping With LM in Spring of 2017.</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Unable to make a decision in mist of the storm, I brought a generic baby blanket to the hospital. As I sat in PICU and watched her breathe, I couldn't stop wishing she had something more.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">As the months went on, my daughter began thriving. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Surgery was a success and my baby was finally breathing easy! </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It was time to <a href="http://copingwithlmblog.blogspot.com/2017/04/how-one-mother-turned-her-daughters.html" target="_blank">help others</a>. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Coping With LM's <a href="http://www.copingwithlm.org/program-app" target="_blank">Care Package Program</a> was created and shortly after, donated handmade blankets were being given to babies recovering from airway surgery, all around the world! </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Last year alone, Coping With LM gave 106 blankets from California to Canada to Ireland and beyond! </span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipq4-vqO2ybEjbGZBspkGEAIQJhICjukRSKzeCUns7QzfhIpamCknxlY8v__oxx89hhgA47CkUlgzVZF_v7vr1ETuIDM8RvoFkEJU100t8wftkwuMM2v-6bcMbNkPaw-8DajXO5hdC_YQ3/s1600/cwl+blankets2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="960" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipq4-vqO2ybEjbGZBspkGEAIQJhICjukRSKzeCUns7QzfhIpamCknxlY8v__oxx89hhgA47CkUlgzVZF_v7vr1ETuIDM8RvoFkEJU100t8wftkwuMM2v-6bcMbNkPaw-8DajXO5hdC_YQ3/s400/cwl+blankets2.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Handmade blankets that were donated to Coping With LM in Summer of 2017</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">No longer are babies with airway disorders laying in cold, sterile hospital beds. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>They are now wrapped in love and strength!</b> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Gillian, mom of a Pint-Sized Powerhouse says, </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"<i>Receiving a care package from Coping With LM made me feel like </i></span><span style="background-color: #f6f7f9; color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><i>I wasn't alone, supported, cared for, wrapped in the kindness of that beautiful handmade hat and blanket.</i>"</span></div>
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<span style="background-color: #f6f7f9; color: #1d2129;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>The love and time every donor puts into each blanket does not go unnoticed. From a mother who wished for her baby to be wrapped in such beauty, I thank you.</b> </span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Blankets to books, everyone can support the cause! </span></span></div>
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<span style="background-color: #f6f7f9; color: #1d2129;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Learn how you can make a difference <a href="http://www.copingwithlm.org/howcanihelp" target="_blank">here</a>.</span></span></div>
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<span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: #f6f7f9;">Want to donate items from home? </span></span></div>
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<span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: #f6f7f9;">Visit our Amazon Wishlist <a href="http://a.co/8iRoYEu" target="_blank">here</a>.</span></span></div>
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<span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: #f6f7f9;">In health & happiness, </span></span></div>
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<span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: #f6f7f9;">Stephanie Hueston</span></span></div>
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<span style="color: #1d2129; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: #f6f7f9;">copingwithlm@yahoo.com</span></span></div>
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Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-3203369196604961313.post-17563202391900356212017-05-10T10:20:00.002-07:002017-05-10T10:22:24.281-07:00Overcoming Laryngomalacia And GERD: Jackson's Story <div style="text-align: center;">
<span style="background-color: white;"><span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: 14px;">Photos submitted and written by Kimberly Reider, Jackson's Mom. </span></span></span></div>
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: 14px;">It has been a few months since really being active on </span></span><a href="https://www.facebook.com/CopingWithLM/?hc_ref=PAGES_TIMELINE&fref=nf" style="color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px;" target="_blank">here</a><span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: 14px;">. Most of you probably remember me and my son from his nonstop hospitalizations from chronic reoccurring respiratory infections/viruses. Photos and videos of <a href="http://www.copingwithlm.org/what-is-lm" target="_blank">wheezing, gagging, coughing, blue spells and stridor</a>; as I was trying to figure out what this airway defect actually has on us and how to beat it. </span></span></span><br />
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">My sons story beg</span><span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">an from birth. He was born pretty quite. 'An under developed voicebox' we were told in the hospital. He was snorting all the time & sounded EXTREMELY congested. He was admitted to NICU for observe.. Where nobody checked his airway. They did see his reflux but at the moment it wasnt too bad because I was nursing. After discharge we had his follow up apt the next two days. He was one week old. From that time, at one week to 7 weeks old we went to different doctors multiple times a week and to emergency rooms as we genuinely believed he was fighting for air. He is the ONLY NEWBORN IVE EVER SEEN BREATHE THROUGH HIS MOUTH. his congestion was horrible. We were told the usual<br /><a href="https://www.facebook.com/CopingWithLM/photos/a.1440317189334252.1073741838.138719706160680/1455728911126413/?type=3&theater" target="_blank">°babies have small airways°your sons may be even smaller but not harmful° he must have inhaled fluid during birth° babies breathe loud</a></span><br />
<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br />All in all NO DOCTOR had any concern. Though while laying completely flat his oxygen would drastically drop and he would start gasping for air. So his father and I took it upon ourselves with the support of his insurance to self refer to an <a href="http://www.copingwithlm.org/find-an-ent" target="_blank">ENT</a>. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Jackson, suffering from laryngomalacia and GERD.</td></tr>
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /><br /><a href="http://health.usnews.com/doctors/seth-linker-306456" target="_blank">Dr. Seth Linker, Tunkhannok Pennsylvania. ENT</a>, he was a God send. Our first breath of fresh air. </span><br />
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">Someone who didn't even listen to me but INFORMED me. He suspected laryngomalacia right away. Did his in office scope and sure enough he had his proof. He instantly was prescribed medication for reflux as you all know reflux comes hand in hand. He chalked up the congestion mostly to reflux. His congestion was so loud it drown out the sound of stridor. (His squeak) he prescribed him an home apnea monitor as we both suspected sleep and feeding apnea. </span><br />
<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br />The first night we realize how bad his apnea was. And within a few days on zantac the congestion went away.<br /><br />Jackson seemed normal from that point on, except for one BIG problem.<br /><br /><b>RESPIRATORY DISTRESS.</b></span><br />
<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><b><br /></b>At 130 days old he had spent 78 of them sick. He was constantly in isolation in the Pediatric ICU. Constantly on antibiotics until we hit a point where we began to refuse, they didn't work anyway. At three months old, in PICU I pumped the last of my milk. Due to stress and non stop living in the hospital, apart from my other child took its toll and my supply vanished. </span><br />
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br />That's when trouble really hit. He went from being sick all the time to screaming in pain, arching showing the worst of the worst reflux symptoms. We tried EVERYTHING. Every single H2 blocker and PPI. We did combinations and piggy backed them nothing worked. </span><br />
<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /><b>Of course, reflux flares cause laryngomalacia to be much worse. </b></span><br />
<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br />Now we were in PICU for ALTES (apparent life threatening event syndrome). If it weren't for his apnea monitor I would have lost my son in one particular night after an ALTES, I couldn't wake him. It was a fight to get him barley breathing until making it the local hospital where he was then transported back to the Children's Hospital a few hours away.<br /><br />After doing a 24 hour ph probe study we learned just how severe his reflux is. Right away his doctors all wanted to do the <a href="http://www.webmd.com/heartburn-gerd/fundoplication-surgery-for-gastroesophageal-reflux-disease-gerd" target="_blank">Fundoplication surgery</a> we of course, were not jumping towards that idea. </span><br />
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">We decided to try to only medication we hadn't tried yet. Nexium.<br />Again it wasn't working and I was getting desperate to help him.<br /><br />I was referred to an amazing reflux group here, where I learned so much about severe infant reflux. I learned more about reflux than my sons doctor's know. We significantly upped his PPI dose to PROPER dosing to severe reflux AND got into an amazing doctor (GI) five hours away from us. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Jackson, breathing easy.</td></tr>
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /><br />We learned basically of his problems were fed by the reflux & once we controlled it, life for us changed.</span><br />
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">His airway is healing from acidic damage, he recently outgrew laryngomalacia which is what his ENT said would happen once we controlled his acid.</span><br />
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<span style="background-color: white;"><span style="color: #1d2129; font-family: "helvetica" , "arial" , sans-serif;"><span style="font-size: 14px;">He hasn't had any ALTES AND NO APNEA. He has had his first cold that didn't require hospital stays, we were able to handle it at home. </span></span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br />So my time here is done.</span><br />
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<span class="text_exposed_show" style="background-color: white; color: #1d2129; display: inline; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><b> I plan to stay to help others, it does get better! </b><br /><br />Thank each and every one of you who have helped me in this. We are the strongest moms I know!<span class="_5mfr _47e3" style="font-family: inherit; line-height: 0; margin: 0px 1px; vertical-align: middle;"><span class="_7oe" style="display: inline-block; font-family: inherit; font-size: 0px; width: 0px;">💙</span></span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi36dRwgpM8Lo8S8R7ttqtgssysebwA8nKqzu6IdiZNvex4hyphenhyphenuofzKO09lmjPi8IrcABGMCQAGRzWbRhowcIARbVf5gRX2uAwaE1JCLKVozag6x1RCPygMwlaSjP4q701sxLtPK6x6mSQUX/s1600/JacksonAward.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="544" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi36dRwgpM8Lo8S8R7ttqtgssysebwA8nKqzu6IdiZNvex4hyphenhyphenuofzKO09lmjPi8IrcABGMCQAGRzWbRhowcIARbVf5gRX2uAwaE1JCLKVozag6x1RCPygMwlaSjP4q701sxLtPK6x6mSQUX/s640/JacksonAward.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jackson's <a href="https://www.facebook.com/CopingWithLM/photos/a.1440317189334252.1073741838.138719706160680/1440317399334231/?type=3&theater" target="_blank">Survivor Award</a> </td></tr>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Coping WIth Laryngomalacia, Inc. will be referred to as CWL in this blog post.</i></span></div>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In 2010, Stephanie Hueston’s second daughter, Seraphina was born. Shortly after birth it was very obvious something was very wrong. The newborn was blue and struggling to breathe. Stephanie was assured her daughter was suffering from “normal newborn congestion” and was told it would resolve within a few days. As the days passed Seraphina’s health started deteriorating. She was gasping for every breath and stopped breathing multiple times a day. Stephanie rushed Seraphina to the pediatrician's office and demanded she see a specialist. Something was wrong with her baby, she just didn’t know what. </span></div>
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<a href="http://www.copingwithlm.org/what-is-lm" target="_blank"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim4xdDop81Uker0poDSm1uYJfid31dQJmGLQMUXV8LvBqQPmKEpnEBH42SQCYTOpWCaPwbJp-qBLuzXiXvn-R97VQ5UySydrkmbWuniNmn_6CAcqZZjKY-6zw6POKcgS1lCvJsaFMQg7Bv/s640/8+dx+of+lm.png" width="256" /></a></div>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Five weeks after Seraphina’s birth, she was diagnosed with an airway defect called laryngomalacia. <a href="http://www.copingwithlm.org/what-is-lm" target="_blank">Laryngomalacia</a> is a congenital defect of the larynx. The tissues above the larynx are floppy and omega shaped. When the infant breathes in, they collapse-creating an airway obstruction. For almost 95% of all cases LM is a common, benign condition. No further medical treatment is required after initial diagnosis. And then there is a very small percentage of babies that are diagnosed with life threatening LM. Stephanie’s daughter fell into this category. Seraphina's doctor had later told Stephanie, on a scale of 1-10 Seraphina was 12; the worse case of LM he has ever seen.</span></div>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">On June 11, 2010 Seraphina had airway surgery known as a <a href="http://www.copingwithlm.org/what-is-lm" target="_blank">supraglottoplasty</a>. During a supraglottoplasty, the surgeon cuts each side of the epiglottis tissue, creating more room in the airway for when the floppy larynx collapses. The surgery does not cure LM but helps improve the symptoms. After surgery, Seraphina was transferred to ICU where she was put on oxygen, steroids to keep her lungs open and morphine to ease the pain.</span></div>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">As the summer went on, Laryngomalacia Warrior Seraphina started improving while Stephanie was falling apart. Exhausted, scared and overwhelmed Stephanie remembered advice her mother had given her--in every situation, you have a choice. Laryngomalacia wasn’t any different. Stephanie could let laryngomalacia destroy her or let it empower her, the choice was hers. </span></div>
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<tr><td style="text-align: center;"><span style="margin-left: auto; margin-right: auto;"><a href="http://www.copingwithlm.org/" target="_blank"><img alt="" border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitfAsL7nGp3SyjXG_Gp3xK-pY-CWyjRYbBwEMZ3A7NNJFdtCDxakCq_IOtuW0xcpMFHxqd8GYf67mOBl-67xmCGAUTV89O0KF10DBjNoUDVVCfWLXumD30ONDwcBZopc6uHCcdJucNq8gh/s640/how+to+take+betterfamily+vacationpictures+%25282%2529.png" title="" width="426" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.copingwithlm.org/" target="_blank">Stephanie, Founder & President of Coping With Laryngomalacia, Inc.</a></td></tr>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><a href="https://www.facebook.com/CopingWithLM/" target="_blank">Coping With Laryngomalacia, Inc.</a> was founded in July of 2010 and is the first 501 (c ) 3 nonprofit organization in the USA and in the world that provides support, strength and education for families coping with laryngomalacia, tracheomalacia and bronchomalacia--all defects of the airway. The CWL Team is made up 100% of volunteers who donate their time, support and passion to the cause daily--while many of them are coping with LM themselves.</span></div>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In addition to <a href="https://www.facebook.com/groups/CWLSupportGroup/" target="_blank">24/7 online support</a> and <a href="http://www.copingwithlm.org/what-is-lm" target="_blank">education</a>, CWL offers <a href="http://www.copingwithlm.org/breastfeeding-" target="_blank">feeding difficulty support</a> and <a href="http://www.copingwithlm.org/bottle--formula-feeding" target="_blank">resources</a> (<a href="https://www.gelmix.com/" target="_blank">Gelmix Thickener</a>), a care package program ingeniously titled the <a href="http://www.copingwithlm.org/program-app" target="_blank">Breathe Easy Care Package Program</a> as well their <a href="http://www.copingwithlm.org/program-app" target="_blank">Pint-Sized Powerhouse Grant Program</a> which helps families pay outstanding medical bills. The organization also offers a<a href="http://www.copingwithlm.org/find-an-ent" target="_blank"> worldwide directory of Pediatric Ear, Nose and Throat doctors who specialize in LM</a>. After finding a knowledgeable ENT, parents are then able to print out <a href="http://www.copingwithlm.org/what-to-ask-your-ent" target="_blank">suggested questions they should ask at the first visit</a>. </span></div>
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<tr><td style="text-align: center;"><span style="margin-left: auto; margin-right: auto;"><a href="http://www.copingwithlm.org/what-to-ask-your-ent" target="_blank"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdLxDkHv8aPtLecr0g-dsl9yo8DN_fG0nDFCaIij-i74d9wuQzgm0HUbSmaGqXNFcwPpgLa_lc2_yRs67wKDm-YsDVvwoy5Uf6aL-sczrDkBFE0exBiIhMk2R_fRRvmXCdT_SudFrE_4sk/s640/how+to+take+betterfamily+vacationpictures.png" width="426" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.copingwithlm.org/what-to-ask-your-ent" target="_blank">What To Ask Your ENT</a></td></tr>
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<b style="font-weight: normal;"><br /></b><span style="font-family: "arial"; font-size: 11pt; white-space: pre-wrap;">At the start of the New Year, CWL extended their partnership with <a href="https://chibebe.com/" target="_blank">Chibebe Snuggle Pod</a> AUS and USA. Because of Chibebe's astounding support, babies (six months old and younger) with laryngomalacia can <a href="http://www.copingwithlm.org/chibebe-snuggle-pod-app" target="_blank">receive a Snuggle Pod</a>, free of charge through CWL. </span><br />
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><a href="https://www.facebook.com/CopingWithLM/photos/a.178813452151305.39732.138719706160680/1373477902684848/?type=3&theater" target="_blank">Last year alone</a>, CWL gave 107 care packages to babies with life threatening laryngomalacia and $500.00 in Pint-Sized Powerhouse Grants! With a <a href="https://www.facebook.com/groups/CWLSupportGroup/" target="_blank">community</a> reaching from New Jersey to California, from Canada to England and South Africa to Australia; parents are supported, educated and empowered thanks to the ongoing support from CWL's <a href="http://www.copingwithlm.org/donate" target="_blank">incredible donors</a> and volunteers. </span></div>
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<tr><td style="text-align: center;"><span style="margin-left: auto; margin-right: auto;"><a href="http://www.copingwithlm.org/program-app" target="_blank"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8a5emv_LnTStEYpKNPgq7Ph8Fk-a1Ow1BbZolntLXvuBtSQhlP7i-dU71_MPX3brO6eKA3OAY6sfWk6VqgTFkbw65-7v88blAdD1GQt4egpk0-CBGImcHHy4T2NZyR9cQe4oy9QLXfvk0/s640/laryngomalacia+SURVIVOR+gives+back+by+making+care+packages.png" width="426" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.copingwithlm.org/program-app" target="_blank">Seraphina with #LuTheLamb assembling care packages </a></td></tr>
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<span style="font-family: "arial";"><span style="font-size: 14.6667px; white-space: pre-wrap;">CWL's future is bright! </span></span></div>
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<span style="font-family: "arial";"><span style="font-size: 14.6667px; white-space: pre-wrap;">Planning for <a href="https://www.facebook.com/pg/CopingWithLM/videos/?ref=page_internal" target="_blank">World Airway Defects Day</a> is now underway, supporters are encouraged to paint their nails light blue for LM on July 10th to show their support! </span></span></div>
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<span style="font-family: "arial";"><span style="font-size: 14.6667px; white-space: pre-wrap;">The <a href="https://www.facebook.com/CopingWithLM/photos/a.178813452151305.39732.138719706160680/1313409902024982/?type=3&theater" target="_blank">Lollipops For LM Project</a> will be back this Halloween while</span></span><span style="font-family: "arial"; font-size: 11pt; white-space: pre-wrap;"> CWL Founder & President Stephanie Hueston works closely with families who are walking the same journey she once walked. </span></div>
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<tr><td style="text-align: center;"><span style="margin-left: auto; margin-right: auto;"><a href="http://www.copingwithlm.org/" target="_blank"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge2IvvA77bTxFOvk8_KwCASK9P8ObpCBGnwj6xYWdsPeYRIFN1FxY3o_CNW0vYm_rs473dyZAqLFNWZbDNAucy-jkzikBSoyn0aOB0cOe0LrVHXdvg5Nyq4Me_EpOw0T61vmtvSaUtNQ1K/s640/how+to+take+betterfamily+vacationpictures+%25281%2529.png" width="426" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.copingwithlm.org/" target="_blank">World Airway Defects Day</a></td></tr>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">For more information on CWL on how they help families cope please visit <a href="http://www.copingwithlm.org/" target="_blank">CopingWithLM.org </a></span></div>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">or find them on <a href="https://www.facebook.com/CopingWithLM/" target="_blank">Facebook</a>, <a href="https://twitter.com/CopingWithLM" target="_blank">Twitter</a>, <a href="https://www.pinterest.com/copingwithlm/" target="_blank">Pinterest</a> and <a href="https://www.instagram.com/copingwithlm/" target="_blank">Instagram</a>. </span></div>
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<span style="font-family: "arial";"><span style="font-size: 14.6667px; white-space: pre-wrap;">Want to help? Go <a href="http://www.copingwithlm.org/howcanihelp" target="_blank">here</a>.</span></span></div>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Was your baby just diagnosed with laryngomalacia? Start <a href="http://www.copingwithlm.org/new-to-lm" target="_blank">here</a>.</span></div>
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<span style="background-color: transparent; font-family: "arial"; font-size: 11pt; font-style: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Need to talk to someone directly?</span></div>
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<span style="font-family: "arial";"><span style="font-size: 14.6667px; white-space: pre-wrap;">Email Stephanie anytime at <a href="mailto:copingwithlm@yahoo.com">copingwithlm@yahoo.com</a></span></span></div>
<br />Unknownnoreply@blogger.com9tag:blogger.com,1999:blog-3203369196604961313.post-84525094519698680272017-04-12T08:55:00.000-07:002017-04-12T08:55:08.090-07:00Laryngomalacia: The World of Unknown, to a World of Much Known<div class="separator" style="clear: both; text-align: center;">
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Laryngomalacia: </h1>
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The World of Unknown, to a World of Much Known</h1>
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Written by: Courtney Buhr at <a href="http://countrymomsplace.com/" target="_blank">CountryMomsPlace.com </a></div>
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<span style="box-sizing: inherit; font-weight: 700;">If you are reading this post, you are probably experiencing the same things we experienced when we first heard the word <a href="http://www.copingwithlm.org/what-is-lm" target="_blank">Laryngomalacia</a></span>. What is this? When should we trust our instincts? Where should we turn to? and How do we cope with all of this? <span style="box-sizing: inherit; font-weight: 700;">Yes, its an emotional roller coaster, so read this post to learn how we went from a world of unknown to a world of much known!</span></div>
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<span style="box-sizing: inherit; font-weight: 700;">Have you ever heard:</span></div>
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<li style="box-sizing: inherit;">“Its normal for babies to choke on amniotic fluid”</li>
<li style="box-sizing: inherit;">“Its normal for babies to be congested from amniotic fluid”</li>
<li style="box-sizing: inherit;">“Your just not nursing your baby right”</li>
<li style="box-sizing: inherit;">“Your just spoiling your baby”</li>
<li style="box-sizing: inherit;">“Its normal for an oxygen monitor to beep a lot”</li>
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<span style="box-sizing: inherit; font-weight: 700;">That may be true of any normally healthy new born baby, but not when it weighs on your conscious that something just isn’t right! If it doesn’t feel right its not!</span></div>
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<span style="box-sizing: inherit; font-weight: 700;">June 12, 2015, was one of the best days of our life as we finally were able to meet our second child!</span> A few hours after he was born, he choked and was immediately suctioned, but it was “normal”. He wouldn’t latch, but it was “normal”. He wouldn’t stop screaming and crying, but it was “normal”. He flailed his arms in his sleep, and he made weird noises, but it was “normal”. For everything I knew was wrong, the doctor or nurse had an excuse for why it was “normal”.</div>
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<span style="box-sizing: inherit; font-weight: 700;">I NEEDED REASSURANCE, </span>so at my son’s 2 week well baby check, I brought up my concurs with his PCP. He was quickly admitted to the NICU for stridor (noisy breathing) and sleep apnea (not breathing). <span style="box-sizing: inherit; font-weight: 700;">The next day we were sent to Children’s Hospital, where he was diagnosed with Severe Laryngomalacia.</span></div>
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<span style="box-sizing: inherit; font-weight: 700;">At 2 months old, he had dropped weight from 90% to 20%.</span> which meant <a href="http://www.copingwithlm.org/what-is-lm" target="_blank">he needed surgery</a>. Now we really started to worry as we were advised of possible tracheomalacia and bronchiomalacia. That’s when we had no idea what to do, who to turn to, or how to deal with all the crazy emotions.</div>
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<span style="box-sizing: inherit; font-weight: 700;">Now he’s almost 2 years old.</span> He’s been diagnosed with other related conditions, he hasn’t slept through the night since he was born, colds put him in the hospital, he has been put under for 2 surgeries and 4 scopes and will be having his next scope in 6 weeks. He is on several expensive medications. He sees a plethora of doctors and he goes to therapy 3 times a week</div>
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<span style="box-sizing: inherit; font-weight: 700;">…and just like my instincts told me…its NOT normal!</span></div>
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<span style="box-sizing: inherit; font-weight: 700;">This whole journey had thrown us into “a world of unknown”, just like the <a href="http://www.copingwithlm.org/" style="background-color: transparent; box-shadow: rgb(15, 15, 15) 0px -1px 0px inset; box-sizing: inherit; color: #222222; text-decoration-line: none; transition: color 80ms ease-in, box-shadow 130ms ease-in-out, -webkit-box-shadow 130ms ease-in-out;">Coping With LM</a> Organization describes.</span> We have been through the worry, we have been judged for everything we do or don’t do with him, and it has tested our mommy and daddy relationship, but there is nothing more that has helped us stay strong for our kiddo, than Coping with LM.</div>
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<span style="box-sizing: inherit; font-weight: 700;">This has been an <a href="https://www.facebook.com/groups/CWLSupportGroup/" target="_blank">amazing support group</a> for our family, and so helpful in educating us about this condition!</span> The best part, your never judged for having a conscious that something isn’t right, or that your “spoiling” your kid. They have offered us many resources for doctors, feeding, and anything that is related to Laryngomalacia. When our son had his first surgery, it was on short notice, and they made sure that he received his <a href="http://www.copingwithlm.org/program-app" target="_blank">care package</a> before his surgery. <span style="box-sizing: inherit; font-weight: 700;">Being able to quickly access helpful information in one place, and know people are there to help and listen, weather its your neighbor or someone halfway across the world, has made a world of difference in advocating for our son and making the right medical decisions. <a href="https://www.facebook.com/CopingWithLM/" target="_blank">Coping with LM </a>has help us transition from a world of unknown to a world of much known!</span></div>
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Unknownnoreply@blogger.com15tag:blogger.com,1999:blog-3203369196604961313.post-35229121644979788572017-03-11T15:05:00.000-08:002017-10-26T05:44:14.235-07:0010 Reasons Why You Shouldn't Use A Store Bought Breathing Monitor On A Baby With Laryngomalacia <div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Updated 10/26/17</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Perhaps one of the most important topics I will ever speak about here at <a href="http://copingwithlm.org/" target="_blank">Coping With LM</a>, is the danger of using a store bought breathing monitor on a baby with laryngomalacia. <a href="http://www.copingwithlm.org/what-is-lm" target="_blank">Laryngomalacia </a>causes an airway obstruction and because of that, a hospital grade monitor, rescue oxygen and proper medical support is needed to ensure the baby thrives without any complication.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJaFramybcI63AmzlyYFjAk6LXJyHWI9I82gVipU2hyA6tVwjPyejaAKoPi1g8oCSf7VET3pX_KK-EJol09hKS-UXKZSlQZ2hRAakDDf0PXOXtRbGIolS2qPJl0gEtQjvwPRVOoTV1xmYA/s1600/10+REASONS+WHY+YOU+SHOULDN%2527T+USE+A+STORE+BOUGHT+BREATHING+MONITOR+ON+A+BABY+WITH+LARYNGOMALACIA.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJaFramybcI63AmzlyYFjAk6LXJyHWI9I82gVipU2hyA6tVwjPyejaAKoPi1g8oCSf7VET3pX_KK-EJol09hKS-UXKZSlQZ2hRAakDDf0PXOXtRbGIolS2qPJl0gEtQjvwPRVOoTV1xmYA/s640/10+REASONS+WHY+YOU+SHOULDN%2527T+USE+A+STORE+BOUGHT+BREATHING+MONITOR+ON+A+BABY+WITH+LARYNGOMALACIA.png" style="cursor: move;" width="425" /></a></div>
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<span style="font-size: large;">If you are having a trouble getting a prescription for a hospital grade monitor please contact </span></div>
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<span style="font-size: large;"><a href="https://www.inhmed.com/" target="_blank">In-Home Medical, Inc</a>. </span></div>
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<i><span style="font-size: large;">(not sponsored)</span></i></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">1. NO RESCUE OXYGEN</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">It's 2:00 AM and the monitor is alarming. Your baby is blue and not breathing. You call 911 but it will be a few minute before paramedics arrive. Rescue oxygen is a must <b>anytime</b> an apnea monitor is being used.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">2. LIMITS ARE NOT CORRECT</span><br />
<span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Typically, the prescribing doctor will set limits (when to alarm at slow heart rate, fast heart rate and lung movement) on the monitor prior to first use. The alarm limits are decided by the baby's age are lowered as the baby gets older. Store bought monitor normally have low limits (that can not be changed) to avoid false alarms.<i> </i></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">3. UNRELIABLE </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Store bought monitors are not made for prolong use, they break quickly which causes unreliable readings.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">4. NO DATA = NO TREATMENT PLAN</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">If the doctor can not download and view the data, he/she can not prescribe treatment, i.e. extra oxygen, CPAP, BiPAP, surgery, reflux medication or a sleep study.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">5. LACK OF EDUCATION </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">When a baby is prescribed a hospital grade apnea monitor, the medical company comes to the house, gives a CPR class to parents and caregivers, offers education on how to properly use the machine along with proving parents with plan of action, should their child stop breathing.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">6. NOT AS SENSITIVE</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Store bought breathing monitors are known for not detecting actual events.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Megan says, "<span style="background-color: #f6f7f9; color: #1d2129;"><span style="font-family: inherit;"><i>I would regularly witness my son stop breathing and the lights flashed green as</i></span></span><span style="background-color: #f6f7f9; color: #1d2129;"><span style="font-family: inherit;"><span style="font-family: inherit;"><i> if everything was fine. Around nine months old we found out he had moderate to severe sleep apnea and would have frequent pauses in breathing over 25 seconds in length which should have set the alarm off, but <b>never</b> did.</i>"</span></span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: #f6f7f9; color: #1d2129;"><span style="font-family: inherit;"><span style="font-family: inherit; font-size: large;"><br /></span></span></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: #f6f7f9; color: #1d2129;"><span style="font-family: inherit;"><span style="font-family: inherit; font-size: large;">Read Owlet's Disclaimer <a href="http://www.owletcare.com/faq/owlet-disclaimer/" target="_blank"><b>here</b></a>. </span></span></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">7. POOR FIT</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Hospital grade apnea monitors are made to fit growing babies. As the baby grows, the medical supply company supplies new leads and equipment to ensure an accurate read.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Christina says, "<span style="background-color: #f6f7f9; color: #1d2129;"><i>We tried a store bought monitor but the elastic dug into my son's skin and I had trouble getting it to read.<span style="font-size: 12px;">"</span></i></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">8. FALSE SENSE OF SECURITY</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Parents see the monitor flashing green, not alarming and believe everything is alright. Significant apnea can go undetected by using a store bought breathing monitor.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">Read Snuza's Disclaimer <a href="http://www.snuza.com/manuals/" target="_blank">here</a>.</span></div>
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<span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif;">"</span><span style="font-family: "helvetica" , "arial" , sans-serif; white-space: pre-wrap;"><i>Snuza is not intended to diagnose or monitor any disease, handicap or condition.</i>"</span></span><br />
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<span style="background-color: white;"><span style="font-family: "helvetica" , "arial" , sans-serif; white-space: pre-wrap;">CWL Note: It is important to understand the Snuza is designed to alarm twice, once at 15 seconds and then again at 20 seconds<u> after no movement is detected</u>. While this can be beneficial for an otherwise healthy baby, in a deep sleep who needs to take a nice deep breath, it probably won't detect obstructive sleep apnea (a symptom of an airway disorder) since movement is almost always associated with OSA. </span></span><br />
<span style="background-color: white;"><span style="font-family: "helvetica" , "arial" , sans-serif; white-space: pre-wrap;"><i>i.e. gasping, choking, flailing of the arms, kicking of the feet. </i></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">9. THEY DON'T MONITOR EVERYTHING</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Hospital grade apnea monitors monitor heart rate (slow and fast) and lung movement. Store bought monitors don't normally monitor all three. Some just monitor breathing while others just monitor movement.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">10. NOT MADE TO DETECT APNEA</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">For a baby <b>without</b> an airway disorder, a store bought breathing monitor is probably a good way to ease a new parent's mind. The truth of the matter is, store bought breathing monitors are <b>not</b> made to detect apnea, which is a symptom of laryngomalacia. While it may be easier to purchase a breathing monitor online (and have it shipped to your house, thanks <a href="http://smile.amazon.com/ch/45-2424869" target="_blank">Amazon</a> Prime!) than to bother your baby's doctor (or even have a sleep study done) the reality is, it's not worth it. <b>Severe, untreated apnea can cause life altering complications that can be prevented by using a hospital grade apnea monitor.</b></span><br />
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">If you believe your baby stops breathing during sleep please call his/her doctor immediately </span></b><b><span style="font-family: "arial" , "helvetica" , sans-serif;">and ask for a sleep study. </span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>In health & happiness, </b></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>-Stephanie </b></span></div>
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<br />Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-3203369196604961313.post-88029070836152826102017-02-14T08:23:00.001-08:002017-02-14T08:23:48.883-08:00Read With #LuTheLamb Fundraiser <div class="body undoreset" id="yui_3_16_0_ym19_1_1487088371493_4345" style="-webkit-padding-start: 0px; background-color: white; box-sizing: border-box; display: table; font-family: "Helvetica Neue", "Segoe UI", Helvetica, Arial, "Lucida Grande", sans-serif; font-size: 13px; outline: none 0px; padding-left: 0px; padding-top: 12px; width: 993px;" tabindex="0">
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<span id="yui_3_16_0_ym19_1_1487088371493_4348" style="-webkit-padding-start: 0px; font-size: 12pt;">"Hi there! My name is Marla Restaino and I am so very honored to help host a fundraiser for Coping with LM! My daughter Zoey was diagnosed With Laryngomalacia, Inc, at one week old and finding an organization that helps and educates on this topic has been life changing! Coping with Laryngomalacia not only has provided many families with resources and information about LM but they also send out care packages to families whose children have to undergo surgery and need to be hospitalized. Within these care packages are items that can be a comfort to families and children who are going through hospital stays, such as handmade blankets, snacks, toys and books. </span></div>
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<span id="yui_3_16_0_ym19_1_1487088371493_4350" style="-webkit-padding-start: 0px; font-size: 12pt;">Last year I became an Independent Consultant for Usborne Books and More and had been wanting to host a fundraiser where I, with the help of Usborne and Literacy for a Lifetime could donate books to an organization that I felt connected to.</span></div>
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<span id="yui_3_16_0_ym19_1_1487088371493_4358" style="-webkit-padding-start: 0px; font-size: 12pt;">When I saw that Coping with LM was in need of donations for their care packages and that books were a part of the package - I knew this was what I wanted to be a part of! </span></div>
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<span id="yui_3_16_0_ym19_1_1487088371493_4354" style="-webkit-padding-start: 0px; font-size: 12pt;">Here is where you come in! I would love for you to join our Facebook event to hear more stories and join us in spreading awareness as well as asking you to consider donating so we can ensure that Coping with Laryngomalacia, Inc. has plenty of books to fill their care packages with!</span></div>
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<span id="yui_3_16_0_ym19_1_1487088371493_4359" style="-webkit-padding-start: 0px; font-size: 12pt;">Every $10 you donate, will allow us to provide Coping with LM, with one of Usborne's Best Selling Books from the series "That's Not My.."! This series has over 20 different titles and provides children with beautifully illustrated pages that will engage them through visual and sensory experiences! This would be such a wonderful comfort to any child who has gone through surgery or an extended hospital stay. </span></div>
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<span id="yui_3_16_0_ym19_1_1487088371493_4656" style="-webkit-padding-start: 0px; font-size: 12pt;">You can donate at the website below - It will be open for 2 weeks! <a href="https://www.youcaring.com/copingwithlaryngomalacia-756823" rel="nofollow" shape="rect" style="-webkit-padding-start: 0px; background: transparent; color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank">https://www.youcaring.com/copingwithlaryngomalacia-756823</a></span></div>
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<span id="yui_3_16_0_ym19_1_1487088371493_4363" style="-webkit-padding-start: 0px; font-size: 12pt;">This fundraiser will run for 2 weeks, during that time, I will be sharing our own story as well as more information on airway defect disorders and Usborne Books and More! Together we can bring more awareness about airway defect disorders and help to fill these care packages with the best books out there!</span></div>
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<span id="yui_3_16_0_ym19_1_1487088371493_4384" style="-webkit-padding-start: 0px; font-size: 12pt;">Thank you for joining us!</span></div>
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<span id="yui_3_16_0_ym19_1_1487088371493_4383" style="-webkit-padding-start: 0px; font-size: 12pt;">Our Facebook event can be found at:</span></div>
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Our donation page can be found at:</div>
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<a href="https://www.youcaring.com/copingwithlaryngomalacia-756823" id="yui_3_16_0_ym19_1_1487088371493_4373" rel="nofollow" shape="rect" style="-webkit-padding-start: 0px; background: transparent; color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank">https://www.youcaring.com/copingwithlaryngomalacia-756823</a> </div>
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Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-3203369196604961313.post-60960906313104480762017-01-18T14:35:00.001-08:002017-01-18T14:37:10.040-08:00ZERO Blankets In Coping With LM's Donation Box <div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial, Helvetica, sans-serif;">Friends, as of today (January 18, 2017) we have <b>ZERO</b> baby boy blankets and only a handful of baby girl blankets to include in our <a href="http://www.copingwithlm.org/program-app" target="_blank">care packages</a>! </span></div>
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<b><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.copingwithlm.org/donate" target="_blank">Your support is greatly needed at this time</a>.</span></b></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We accept handmade baby blankets (size 36in x 36in) made of new yarn, cotton or fleece. Blanket patterns and ideas can be found on our <a href="https://www.pinterest.com/copingwithlm/patterns-for-care-package-items/" target="_blank">Pinterest Page</a>.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.copingwithlm.org/donate" target="_blank">Donations</a> can be mailed to: </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Coping With LM PO Box 313 Port Monmouth NJ 07758 USA. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">All <a href="http://www.copingwithlm.org/donate" target="_blank">donations</a> are tax deductible. <span class="_5mfr _47e3" style="line-height: 0; margin: 0px 1px; vertical-align: middle;"><span class="_7oe" style="display: inline-block; font-size: 0px; width: 0px;">💙</span></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Why handmade blankets? </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Laryngomalacia<span style="color: #1d2129;"> </span><span style="color: #1d2129;">Mom Lisa explains,</span></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Brielle with #LuTheLamb</td></tr>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>"My daughter Brielle, received her care package on Wednesday and had her S<span class="_5afx" style="direction: ltr; unicode-bidi: isolate;"><span class="_58cm">upraglottoplasty</span></span> surgery on Thursday. Thank you so much for the support and the beautiful care package. My husband and I were blown away!"</i> <span class="_5mfr _47e3" style="line-height: 0; margin: 0px 1px; vertical-align: middle;"><span class="_7oe" style="display: inline-block; width: 0px;">💙</span></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Handmade blankets are personal, comforting and made with love. <span class="_5mfr _47e3" style="line-height: 0; margin: 0px 1px; vertical-align: middle;"><span class="_7oe" style="display: inline-block; font-size: 0px; width: 0px;">💙</span></span></span></div>
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<b><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">DO NOT HESITATE, GIVE TODAY</span></b></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.copingwithlm.org/donate" target="_blank">Sponsor a care package with a donation of $25.00</a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.copingwithlm.org/offical-fundraisers-" target="_blank">Support Coping With LM through it's Official Fundraisers</a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.copingwithlm.org/howcanihelp" target="_blank">Organize a Blanket Drive within your community</a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.copingwithlm.org/howcanihelp" target="_blank">Donate other needed care package items:</a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.copingwithlm.org/howcanihelp" target="_blank">children's books</a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.copingwithlm.org/howcanihelp" target="_blank">small baby toys</a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.copingwithlm.org/howcanihelp" target="_blank">lip balm</a></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><a href="http://www.copingwithlm.org/howcanihelp" target="_blank">pajamas size 3 months through 3T</a></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Molly with #LuTheLamb</td></tr>
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<b><span style="font-family: Arial, Helvetica, sans-serif;">No act of kindness will go unnoticed! </span></b></div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3203369196604961313.post-15662888229469779572016-12-17T16:29:00.002-08:002016-12-31T13:02:59.879-08:00Holiday Giveaway: CLOSED!<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<i><span style="font-size: large;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Happy Holidays from everyone at </span></span></i></div>
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<span style="font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Coping With Laryngomalacia, Inc.!</span></span></div>
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<span style="font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;">We are so excited to be offering a </span></span></div>
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<span style="font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;">giveaway to our amazing families!</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Gift bag includes:</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"> <i>#LuTheLamb stuffed animal</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>#LuTheLamb tote bag</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>She Shines: Sparkling Reflections Of You Journal </i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Hallmark pen set</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>You First Journal by Lea Michele</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><span style="letter-spacing: -1px;">Savannah Bee Travel Gift Set in Lemongrass Spearmint Honey</span></i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><span style="letter-spacing: -1px;">Thirty One Creative Caddy in City Charcoal Swiss Dot</span></i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><span style="letter-spacing: -1px;">That's How I Knot handmade charm bracelet</span></i></span></div>
<div style="background-color: white; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><span style="letter-spacing: -1px;">Poofy Organics soap bar in Peace On Earth</span></i></span></div>
<div style="background-color: white; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><span style="letter-spacing: -1px;">Brooksie & Cas duck lovie & frog hat (size 9-12 months)</span></i></span></div>
<div style="background-color: white; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i><span style="letter-spacing: -1px;"><br /></span></i></span></div>
<div style="background-color: white; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><i><span style="letter-spacing: -1px;"><br /></span></i></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<br /></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;">*<span style="color: blue;">over a $100 value!</span>*</span></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><strike>HOW TO ENTER:</strike></span></span><strike><span style="font-size: medium;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></span></strike></div>
<div style="background-color: white; font-family: Arial, sans-serif; letter-spacing: -1px; text-align: center;">
<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: large;">Follow <a href="https://www.facebook.com/BrooksieAndCas/" target="_blank">Brooksie & Cas on Facebook</a></span></span></li>
</ul>
</div>
<div style="background-color: white; font-family: Arial, sans-serif; letter-spacing: -1px; text-align: center;">
<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: large;">Follow <a href="https://www.facebook.com/thatshowiknot/" target="_blank">That's How I Knot on Facebook </a></span></span></li>
<li><span style="font-size: large;">Follow <a href="https://www.facebook.com/AlwaysBloomingBlog/" target="_blank">Always Blooming on Facebook</a></span></li>
<li><span style="font-size: large;"> Leave a review on the<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span><a href="http://greatnonprofits.org/org/coping-with-laryngomalacia-inc" style="color: #2cb6e7; font-family: arial, helvetica, sans-serif; text-decoration: none;" target="_blank">Coping With LM, Inc. GreatNonprofits.com page.</a></span></li>
</ul>
</div>
<div style="background-color: white; font-family: Arial, sans-serif; letter-spacing: -1px; text-align: center;">
<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-size: large;">Once all four tasks are completed, leave a comment on this blog post with:<br /> 1. Your name <br />2. Valid Email address</span></span></li>
</ul>
</div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<br /></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Rules:</b></span></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b>One </b>random winner will be selected and Emailed on 12/30/16/.</span></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">This giveaway is valid worldwide.</span></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Shipping is paid for by Coping With Laryngomalacia, Inc.</span></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Coping With Laryngomalacia, Inc. is <b>not </b>responsible for International custom fees. </span></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">This giveaway is</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"> </span><b style="font-family: arial, helvetica, sans-serif; font-size: small;">not </b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">sponsored by Facebook or Instagram. </span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">This giveaway is <b>not </b>sponsored by GreatNonprofits.com</span></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
<span style="font-size: x-small;"><span style="font-family: "arial" , "helvetica" , sans-serif;">All items were donated to Coping With LM, Inc.</span></span></div>
<div style="background-color: white; font-family: Arial, sans-serif; font-size: 19.5px; letter-spacing: -1px; text-align: center;">
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Unknownnoreply@blogger.com25tag:blogger.com,1999:blog-3203369196604961313.post-78160848798832070322016-12-16T14:11:00.001-08:002016-12-16T14:11:11.267-08:002016: The Year In Review <br />
<div style="text-align: center;">
<span style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif;">Wow! </span></div>
<span style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
What a year 2016 has been for <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=138719706160680&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/CopingWithLM/" style="color: #365899; cursor: pointer; text-decoration: none;">Coping With Laryngomalacia, Inc.</a>! </div>
</span><div style="text-align: center;">
<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><br /></span></div>
<span style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
On July 10, 2016 we celebrated our 2nd Annual Paint Your Nails Light Blue for LM on <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/airwaydefectsday" style="color: #365899; cursor: pointer; text-decoration: none;">#AirwayDefectsDay</a> with tremendous support! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic7y1LBJnICkCiLg1-m1S7tpqDYiqb4bZ9SAbCHetA3mqaOL8tOYMyy0hQ0XQF_ASNUxVDJyukaLR7gnvtSahWkp_PRFti5_uC0PKtO8j_mx3LiOLvH3xMRMNASQdxd1kHqwj_YtPbltW5/s1600/AD40.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic7y1LBJnICkCiLg1-m1S7tpqDYiqb4bZ9SAbCHetA3mqaOL8tOYMyy0hQ0XQF_ASNUxVDJyukaLR7gnvtSahWkp_PRFti5_uC0PKtO8j_mx3LiOLvH3xMRMNASQdxd1kHqwj_YtPbltW5/s320/AD40.jpg" width="320" /></a></div>
<div style="text-align: center;">
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</span><span class="text_exposed_show" style="background-color: white; display: inline;"><div style="text-align: center;">
<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><br /></span></div>
<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
We gifted five, $100.00 Pint-Sized Powerhouse Grants and sent over 100 Care Packages to babies with life threatening <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/laryngomalacia" style="color: #365899; cursor: pointer; text-decoration: none;">#laryngomalacia</a>, around the world.</div>
</span><div style="text-align: center;">
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<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
We launched the first ever <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/lollipopsforlm" style="color: #365899; cursor: pointer; text-decoration: none;">#LollipopsForLM</a> Project this Halloween and continued our fundraising efforts with <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=216747198505486&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/amazonsmile/" style="color: #365899; cursor: pointer; text-decoration: none;">Amazon Smile</a>, <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=199525996762157&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/bravelets/" style="color: #365899; cursor: pointer; text-decoration: none;">Bravelets</a>, <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=1645835108996877&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/bigskybibs/" style="color: #365899; cursor: pointer; text-decoration: none;">Big Sky Bibs</a>, <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=154465557918805&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/jamberrynails/" style="color: #365899; cursor: pointer; text-decoration: none;">Jamberry</a> and <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=489372131273883&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/BrooksieAndCas/" style="color: #365899; cursor: pointer; text-decoration: none;">Brooksie & Cas</a>. </div>
</span><div style="text-align: center;">
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<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
We accepted a wonderful merchandise donation from <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=329995857064842&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/squareprintcom/" style="color: #365899; cursor: pointer; text-decoration: none;">SquarePrint</a> and a generous monetary donation from <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=182198321867671&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/NSWAmbulance/" style="color: #365899; cursor: pointer; text-decoration: none;">NSW Ambulance</a>. </div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiauJbwP9pQTkS-iS7fEGW8XPyXR5P-VyfdmhuUPdBXWXWIU-MWvSekoMr57OcOQUIBeKajw1wz2wV2Vpr1VVuHNc11xnRrC8Mbj75_UFq6VU4Lto1eqjR14H-OjbdTHKYL0Okv63Wm8Ddb/s1600/CWL+Noami+blog+post.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiauJbwP9pQTkS-iS7fEGW8XPyXR5P-VyfdmhuUPdBXWXWIU-MWvSekoMr57OcOQUIBeKajw1wz2wV2Vpr1VVuHNc11xnRrC8Mbj75_UFq6VU4Lto1eqjR14H-OjbdTHKYL0Okv63Wm8Ddb/s320/CWL+Noami+blog+post.jpg" width="240" /></a></div>
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</span><div style="text-align: center;">
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<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
We hosted a huge parent support live chat with <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=468719013165553&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/GelmixThickener/" style="color: #365899; cursor: pointer; text-decoration: none;">Gelmix Thickener</a> and continued our partnership with <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=113828818719520&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/ChibebeSnugglePod/" style="color: #365899; cursor: pointer; text-decoration: none;">Chibebe Snuggle Pod</a> Australia by extending our program to the USA.</div>
</span><div style="text-align: center;">
<br /></div>
<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
With your support, we raised over $1,300.00 with our 'One Shirt = One Care Package' Fundraiser this past November and made CWL history by raising over $700.00 on <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/givingtuesday" style="color: #365899; cursor: pointer; text-decoration: none;">#GivingTuesday</a>! </div>
</span><div style="text-align: center;">
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<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
Finally, we humbly received the 2016 Top-Rated Nonprofit Award from <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=19964099705&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/greatnonprofits/" style="color: #365899; cursor: pointer; text-decoration: none;">GreatNonprofits</a> and became a bronze nonprofit with <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=100399840983&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/GuideStarUSA/" style="color: #365899; cursor: pointer; text-decoration: none;">GuideStar USA, Inc.</a></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaVjVpoxORad9Ou1mX63VXPu0z7SczGAav_C9QU-S02a5jnzB6WUw3otRAZu5k9DgrtT_vl7ppM903NN_YToL-WcpgRCiBizvE2loHoERrf_-50Va1QIPBWNA_C9KhX9TaNevRL6VqTTlU/s1600/Great+NP+16.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaVjVpoxORad9Ou1mX63VXPu0z7SczGAav_C9QU-S02a5jnzB6WUw3otRAZu5k9DgrtT_vl7ppM903NN_YToL-WcpgRCiBizvE2loHoERrf_-50Va1QIPBWNA_C9KhX9TaNevRL6VqTTlU/s320/Great+NP+16.png" width="320" /></a></div>
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</span><div style="text-align: center;">
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<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
As 2016 comes to a close, I can rest peacefully knowing- with your support, <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=138719706160680&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/CopingWithLM/" style="color: #365899; cursor: pointer; text-decoration: none;">Coping With Laryngomalacia, Inc.</a> and <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/luthelamb" style="color: #365899; cursor: pointer; text-decoration: none;">#LuTheLamb</a> have fulfilled their missions. Families-around the world- are supported, strengthened and educated. So thank you for giving, volunteering, supporting and loving CWL... it is because of YOU, we were able to accomplish what we have in 2016. </div>
</span><span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Health & Happiness in 2017.</div>
</span><span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><div style="text-align: center;">
-Stephanie Hueston, CWL Founder & President </div>
</span><div style="color: #365899; cursor: pointer; font-family: Helvetica, Arial, sans-serif; text-align: center; text-decoration: none;">
<a href="http://copingwithlm.org/" rel="nofollow nofollow" style="color: #365899; cursor: pointer; font-family: Helvetica, Arial, sans-serif; text-decoration: none;" target="_blank"></a><a href="http://copingwithlm.org/" rel="nofollow nofollow" style="color: #365899; cursor: pointer; text-decoration: none;" target="_blank">copingwithlm.org</a></div>
</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3203369196604961313.post-25222161663900647362016-11-23T14:17:00.002-08:002016-11-23T14:20:27.790-08:00Giving Guide With Coping With LM<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">With the Holiday Season quickly approaching, many supporters are looking for ways to give back and support Coping With Laryngomalacia, Inc. </span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Our volunteers have put together a Giving Guide so supporters can choose how to give to Coping With LM, in the most meaningful and significant way.</span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><br /></i></span></div>
<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Please share this post with family and friends, your support is appreciated!</i></span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="text-align: center;">Tax deductible donations of any amount</span> can be made at <a href="http://copingwithlm.org/">CopingWithLM.org</a></b></span></div>
<div>
<img height="320" src="https://static.wixstatic.com/media/1d6fc5_60a914c5d6e34a57b4c69d973454a932.jpg/v1/fill/w_447,h_447,al_c,q_80,usm_0.66_1.00_0.01/1d6fc5_60a914c5d6e34a57b4c69d973454a932.webp" width="320" /></div>
<div>
<br /></div>
<div>
<b>CWL's Online Store Holiday Sale</b></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">When: 11/24-11/18</span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Where: <a href="http://www.copingwithlm.org/store">http://www.copingwithlm.org/store</a></span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Details: Use coupon code HOLIDAYLU15 at checkout for 15% off your entire purchase!</span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Shipping worldwide. </span></div>
<div>
<img height="320" src="https://scontent-iad3-1.xx.fbcdn.net/v/t1.0-9/14641991_1304136566285649_4595508053188161326_n.jpg?oh=45ae1b5ce6325818578ae1c3a84ac3fc&oe=58C21DB5" width="240" /></div>
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</div>
<div>
<b><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b></div>
<div>
<b><span style="font-family: "arial" , "helvetica" , sans-serif;">T-Shirts For CWL Campaign</span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When: now until 12/1</span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Where: <a href="https://www.booster.com/tshirtsforcwl">https://www.booster.com/tshirtsforcwl</a></span></div>
<div>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Details: <span style="font-family: , "trebuchet ms" , sans-serif; font-size: 15px;">We are calling upon our community to raise awareness for laryngomalacia, tracheomalacia and bronchomalacia while supporting our mission! Each t-shirt sold will send one care package to a baby with LM, TM, BM in ICU recovering from airway surgery.</span></span></div>
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<span style="font-family: , "trebuchet ms" , sans-serif; font-size: 15px;"><br /></span></div>
<div>
<img height="160" src="https://scontent-iad3-1.xx.fbcdn.net/t31.0-8/15000598_1324097320956240_2304600426595560728_o.jpg" width="320" /></div>
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<span style="font-family: , "trebuchet ms" , sans-serif; font-size: 15px;"><br /></span></div>
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<span style="font-family: , "trebuchet ms" , sans-serif; font-size: 15px;"><b><br /></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 15px;"><b>#LuTheLamb Nail Wrap Fundraiser with Jamberry</b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: , "trebuchet ms" , sans-serif; font-size: 15px;">When:</span><span style="background-color: white; color: #1d2129;">11/19-11/29</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: , "trebuchet ms" , sans-serif; font-size: 15px;">Where: </span><a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/group.php?id=909163042550539&extragetparams=%7B%22directed_target_id%22%3A219933038120183%7D" href="https://www.facebook.com/groups/909163042550539/" style="background-color: white; color: #365899; cursor: pointer; text-decoration: none;">https://www.facebook.com/groups/909163042550539/</a><span style="font-family: , "trebuchet ms" , sans-serif; font-size: 15px;"> </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: , "trebuchet ms" , sans-serif; font-size: 15px;">Details: </span><span style="background-color: white; color: #1d2129;">30% of sales will be donated to CWL</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPdFZxs2dkGlZjXDH4ZGrOHyJHQIprOtBBo4IwuIFlS-NFQ61BDEbq4GQYtV3JTABx0KN3BBW07BYcPlRwtisqrISSkdgH5wTmXPNyyfiGU2hXOW7xTnS5A5r1WRqqOXQMwRTK6VkEmKfr/s1600/3c598eac-c73b-4867-88a2-c84120ceb451%2526w%253D1500%2526h%253D550.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="194" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPdFZxs2dkGlZjXDH4ZGrOHyJHQIprOtBBo4IwuIFlS-NFQ61BDEbq4GQYtV3JTABx0KN3BBW07BYcPlRwtisqrISSkdgH5wTmXPNyyfiGU2hXOW7xTnS5A5r1WRqqOXQMwRTK6VkEmKfr/s320/3c598eac-c73b-4867-88a2-c84120ceb451%2526w%253D1500%2526h%253D550.png" width="320" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 15px;"><b>#GivingTuesday With Bravelets</b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 15px;">When: 11/19</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: , "trebuchet ms" , sans-serif; font-size: 15px;">Where: </span><a href="https://www.bravelets.com/bravepage/breathe-easy-coping-with-lm-inc" rel="nofollow nofollow" style="background-color: white; color: #365899; cursor: pointer;" target="_blank">https://www.bravelets.com/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>bravepage/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>breathe-easy-coping-with-lm<wbr></wbr><span class="word_break" style="display: inline-block;"></span>-inc</a></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Details: One day only, Bravelets will be donating 20% of all sales (made on the provided fundraising link) to Coping With LM! Bravelet bracelets make the perfect gift! </span></div>
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<img height="203" src="https://scontent-iad3-1.xx.fbcdn.net/v/t1.0-9/14479781_1289829217716384_2788715859657724140_n.jpg?oh=0042b768d961138a1264e9dae5e0cf39&oe=58C414C8" width="320" /></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">Donation Matching Program</span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When: ongoing</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Where: Your employer may match your charitable donations.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Details:<b> </b><span style="background-color: white;"><a href="http://tinyurl.com/jg38rwu">http://tinyurl.com/jg38rwu</a></span></span></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">AmazonSmile </span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When: ongoing</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Where: <span id="yui_3_16_0_1_1479934313741_17241" style="background-color: white; color: #333333;"><a href="https://smile.amazon.com/gp/r.html?C=7H9VD8U0VUVE&R=31B84NSKOCZ13&T=C&U=http%3A%2F%2Fsmile.amazon.com%2Fch%2F45-2424869&A=NWSVGPGSYYTVQ8VQAWBRJ7V21FQA&H=WWMUXLUR9O7CKE2JFXSJZGRCKV0A" id="yui_3_16_0_1_1479934313741_17247" rel="nofollow" style="background: transparent; color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank">smile.amazon.com/ch/45-2424869</a> </span></span></div>
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<span style="color: #333333; font-family: "arial" , sans-serif;"><span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14.6px;">Details: You shop, Amazon donates. .05% of each edible purchase goes to Coping With LM.</span></span></span></div>
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<img height="320" src="https://scontent-iad3-1.xx.fbcdn.net/v/t1.0-9/15032245_1325156010850371_4368354225498960603_n.jpg?oh=1f1255d0d8d113e8a8b4bd9cfe2c41dd&oe=58AFDD42" width="320" /></div>
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<span style="color: #333333; font-family: "arial" , sans-serif;"><span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14.6px;"><b>#LuTheLambs Holiday Gift Basket </b></span></span></span></div>
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<span style="color: #333333; font-family: "arial" , sans-serif;"><span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14.6px;">When: now until 12/1</span></span></span></div>
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<span style="color: #333333; font-family: "arial" , sans-serif;"><span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14.6px;">Where: Coping With LM HQ</span></span></span></div>
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<span style="color: #333333; font-family: "arial" , sans-serif;"><span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: 14.6px;">Details: </span></span></span></div>
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<img height="320" src="https://scontent-iad3-1.xx.fbcdn.net/v/t1.0-9/15027432_1335227509843221_363894419472836103_n.jpg?oh=b22351e3ee9e6cf874237175cdadf0c1&oe=58CC908D" width="320" /></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">Care Package Wishlist</span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When: ongoing</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Where: Coping With LM HQ</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Details:</span></div>
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<img height="320" src="https://scontent-iad3-1.xx.fbcdn.net/v/t1.0-9/14642407_1305064886192817_4566786662945635290_n.jpg?oh=808869389a39cc589704a3fd3f403a8a&oe=58B52997" width="320" /></div>
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*If you would like to purchase a blanket or hat to donate to this program please go <a href="https://www.etsy.com/listing/464203542/donate-a-hat-to-coping-with?ref=shop_home_active_1">here</a>.</div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">#spreadthelovery Project With Baby Jack Co.</span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When: ongoing</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Where: <span style="background-color: white;"><a href="http://tinyurl.com/h34uzjo">http://tinyurl.com/h34uzjo</a></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">Details:</span><b style="background-color: white;"> </b><span style="color: #606060; font-family: "open sans" , sans-serif; font-size: 13px;">Your</span><span style="color: #606060; font-family: "open sans" , sans-serif; font-size: 13px;"> </span><a data-content="http://babyjackandcompany.com/collections/spreadthelovey/products/spreadthelovey-donations-with-coping-with-laryngomalacia?variant=24101157574" data-type="external" href="http://babyjackandcompany.com/collections/spreadthelovey/products/spreadthelovey-donations-with-coping-with-laryngomalacia?variant=24101157574" style="border: 0px; cursor: pointer; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;" target="_blank">donation of $18 per lovey</a><span style="color: #606060; font-family: "open sans" , sans-serif; font-size: 13px;"> </span><span style="color: #606060; font-family: "open sans" , sans-serif; font-size: 13px;">will bring so much joy to a family, during a difficult time in their lives. Cost includes bulk shipping / delivery to Coping With LM, Inc.</span></span></div>
<div class="font_8" style="border: 0px; color: #606060; font-stretch: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Enter code KIND to offset the pre-set shipping fee at checkout.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">No matter what shipping info you enter, it will be shipped to Coping With LM, Inc. in 1 bulk shipment.</span></div>
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<img height="320" src="https://static.wixstatic.com/media/1d6fc5_cfe458b7bdd440caa79fb71b11167c2e~mv2_d_1774_1774_s_2.jpg/v1/fill/w_254,h_255,al_c,q_80,usm_0.66_1.00_0.01/1d6fc5_cfe458b7bdd440caa79fb71b11167c2e~mv2_d_1774_1774_s_2.webp" width="318" /></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">Big Sky Bibs: Colors For A Cause Campaign</span></b></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">When: ongoing</span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Where: <a href="http://www.bigskybibs.com/">http://www.bigskybibs.com/</a></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Details: 5% of all light blue items sold will go to Coping With LM.</span></div>
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<img src="https://static.wixstatic.com/media/1d6fc5_56f8da909b1a418cb9a1dbc428ab83f0~mv2.png/v1/fill/w_222,h_273,al_c,q_80,usm_0.66_1.00_0.01/1d6fc5_56f8da909b1a418cb9a1dbc428ab83f0~mv2.webp" /></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3203369196604961313.post-16097702345957539472016-11-20T18:57:00.000-08:002016-11-20T18:57:04.076-08:00URGENT: Your Support Is Needed! <div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; line-height: 19.32px; margin-bottom: 6px;">
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<div style="text-align: center;">
<span style="line-height: 19.32px;"><span style="font-size: large;">URGENT:</span></span></div>
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<span style="font-size: large;"><span style="line-height: 19.32px;">We have 11 days to reach our goal of 50 t-shirts so we can continue to send care packages to babies with</span><span style="line-height: 19.32px;"> </span><a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/laryngomalacia?source=feed_text&story_id=938298846304482" style="color: #365899; cursor: pointer; line-height: 19.32px; text-decoration: none;"><span class="_5afx" style="direction: ltr; unicode-bidi: isolate;"><span aria-label="hashtag" class="_58cl _5afz" style="color: #4267b2; unicode-bidi: isolate;">#</span><span class="_58cm">laryngomalacia</span></span></a><span style="line-height: 19.32px;">.</span></span></div>
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<span style="line-height: 19.32px;"><span style="font-size: large;">One t-shirt sold = one care package shipped.</span></span></div>
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<span style="font-size: large;"><span style="line-height: 19.32px;">Tag a friend and share this post, your support is needed and appreciated!</span><span style="line-height: 19.32px;"> </span></span></div>
<span class="text_exposed_show" style="display: inline;"><div style="text-align: center;">
<span style="font-size: large;"><span style="line-height: 19.32px;">~~></span><span style="line-height: 19.32px;"> </span><a href="https://www.booster.com/tshirtsforcwl" rel="nofollow" style="color: #365899; cursor: pointer; line-height: 19.32px; text-decoration: none;" target="_blank">https://www.booster.com/tshirtsforcwl</a></span></div>
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<img height="320" src="https://scontent-iad3-1.xx.fbcdn.net/t31.0-8/15000598_1324097320956240_2304600426595560728_o.jpg" width="640" /></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3203369196604961313.post-60872299489774880732016-11-07T15:10:00.002-08:002016-11-07T15:10:42.798-08:00#LuTheLamb's Holiday Gift Basket- DONATIONS NEEDED<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRDIBfOvvy-RM-ur3iHVbFCaLaKp3KRu7lIVy00v9ryAaJjfEHf32Huah_Fl8tYkOsC8bD7Sa4FjMme0XNIznhjBH9YFh-07dqEeKI-WmCruTdsyfDqFE4oGpOexrH8f6xUkssABxdhcv1/s1600/CWl+Lu%2527s+holiday+basket.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRDIBfOvvy-RM-ur3iHVbFCaLaKp3KRu7lIVy00v9ryAaJjfEHf32Huah_Fl8tYkOsC8bD7Sa4FjMme0XNIznhjBH9YFh-07dqEeKI-WmCruTdsyfDqFE4oGpOexrH8f6xUkssABxdhcv1/s640/CWl+Lu%2527s+holiday+basket.jpg" width="640" /></a></div>
<br />Unknownnoreply@blogger.com15tag:blogger.com,1999:blog-3203369196604961313.post-25355771043542528632016-11-03T11:28:00.003-07:002016-11-03T11:28:57.804-07:00Pint-Sized Powerhouse Grant Recipient : Lyric<div id="yiv9477583317yMail_cursorElementTracker_1478081429588">
Because of Coping With Laryngomalacia, Inc. <a href="http://www.copingwithlm.org/donate">amazing donors</a>, Lyric Hammons (who was born with <a href="http://www.copingwithlm.org/what-is-lm">laryngomalacia</a>) was able to receive a <a href="http://www.copingwithlm.org/program-app">$100.00 Pint-Sized Powerhouse Grant</a> to help pay her outstanding medical bills. </div>
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<div id="yiv9477583317yMail_cursorElementTracker_1478081429588">
Lyric
was born via c-section at 39 weeks old. On the 2nd day at the hospital
Lyric had an episode where she was basically throwing up from her mouth
and nose and started turning blue in the face. At that time I was told
that this was happening due to the amniotic fluid still trying to come
out of her system.</div>
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On
our 3rd day home it happened again and it was so awful. I panicked. I
cried. I was so scared as these episodes was preventing her from
breathing because the fluid trying to come out was so thick. After
calming her down and getting out as much of the yuck (as we called it)
we took her to see her pediatrician and once again was told the amniotic
fluid story.</div>
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Around
a week and half of being home I noticed Lyric had this <a href="http://www.copingwithlm.org/what-is-lm">weird airy breathing and it didn't sound right</a>. She was so uncomfortable. The
constant crying didn't help. I called and spoke to a nurse and she told
me once again it was normal. The mommy in me told me something was wrong
with my baby. So I asked to come in. I spoke with the doctor again and
told him about the constant crying. I was then told she had colic in addition to the amniotic fluid story.</div>
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By
the time Lyric was a month we had been to the ER 4 times because she
had to be suctioned out due to the fluid being so thick. I wasn't able to
get it all out when these episodes occurred. The doctor at the hospital
on the 4th visit told me to get a Nose Freida (which did help home but
did not prevent the ER trips). </div>
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After
the 4th ER visit, the constant crying, getting no sleep, the throw up
spells I had had enough. I finally decided to record Lyric. I am glad I
did. I made another appointment with her pediatrician and this time I
told him I was not leaving until we had some answers. He listened to my
recordings of her and finally agreed it was not amniotic fluid and that
she needed to see a ENT doctor. He then also prescribed Lyric medicine
because now he was saying the constant throwing up was due to a
possible reflux condition. </div>
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Finally
getting to meet with Dr. Bowers at Children's Hospital has been
wonderful. After hearing my story he took a camera and looked in
Lyric's throat and immediately said she had LM and Dysphagia Due to the
force of how she was vomiting he also referred Lyric to a GI doctor. He
immediately changed the milk and her reflux medicine. <b>Life started
getting easier at that point.</b></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXUvVV8ijM21LEy3ONXSZH9w-60FlfsaXgSoTZQvIznwEH46NGMztus4MfYkbiX717awMaR_lsR8CgnZyGLs9LCj4NhzHKdUKfU8hqut0NPVbhZXsv_dkY3fZRZxM0DmklRbZHQM6wm_Od/s1600/CWL+Lyric.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXUvVV8ijM21LEy3ONXSZH9w-60FlfsaXgSoTZQvIznwEH46NGMztus4MfYkbiX717awMaR_lsR8CgnZyGLs9LCj4NhzHKdUKfU8hqut0NPVbhZXsv_dkY3fZRZxM0DmklRbZHQM6wm_Od/s320/CWL+Lyric.jpg" width="175" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lyric celebrating Halloween. Photo submitted by Terra <span id="yui_3_16_0_ym19_1_1478196169978_20416" style="font-family: Arial; font-size: x-small;">Hammons </span></td></tr>
</tbody></table>
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<div id="yiv9477583317yMail_cursorElementTracker_1478082410656">
<br /></div>
<div id="yiv9477583317yMail_cursorElementTracker_1478082424085">
Lyric
has has countless ER visits, been scoped twice, she has had a spinal
tap, swallow studies and has had to be put to sleep to get her stomach
and throat scraped as her ENT and GI doctor wanted a clearer picture of
her throat and to look at her stomach in more detail. She is so strong. </div>
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<br /></div>
<div id="yiv9477583317yMail_cursorElementTracker_1478082532830">
Our
insurance doesn't cover the cost of her Prevacid, Nutramigen milk nor
the products we use to thicken her foods. I am so thankful I found the <a href="https://www.facebook.com/CopingWithLM/">Facebook Page</a>. So many mommies with the same issues I am
having with Lyric has helped me see that I am not alone.</div>
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<br /></div>
<div id="yiv9477583317yMail_cursorElementTracker_1478083473487">
Lyric is now 18 months and although we are no longer dealing with the episodes; she still has the LM, Dysphagia and reflux. </div>
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<br /></div>
<div id="yiv9477583317yMail_cursorElementTracker_1478082693506">
Thanks to the donors as the <a href="http://www.copingwithlm.org/program-app">Pint-Sized Grant Program</a> is a blessing to my family. </div>
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<br /></div>
<div id="yiv9477583317yMail_cursorElementTracker_1478082728030">
Thank you to the founder <a href="http://www.copingwithlm.org/about">Stephanie </a>for all of the hard work you do!</div>
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<div id="yiv9477583317yMail_cursorElementTracker_1478082728030">
<span style="font-family: Arial,Helvetica,sans-serif;">Blog post was written and submitted by: Terra </span><span id="yui_3_16_0_ym19_1_1478196169978_20416" style="font-family: Arial; font-size: x-small;"><span style="font-family: Arial,Helvetica,sans-serif;">Hammons, Lyric's Mother. </span></span></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3203369196604961313.post-63865610792770207112016-10-05T16:30:00.002-07:002016-10-05T16:36:41.475-07:00Pint-Sized Powerhouse Grant Recipient : Hazel<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10826">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10827">Let
me start off by introducing my daughter, Hazel.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10828">
</span>She just turned 8 months old on October 3<sup id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10829">rd</sup>. She is the
second of two little girls in our lives.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10830">
</span>When her older sister June was born she instantly latched on like a
champ, never had any reflux issues, and was never sick.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10831"> </span>When Hazel came into our lives in February we
didn’t know what we were in for.</span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10833">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10834"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10836">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10837">Hazel
was born via c-section at 39 weeks 2 days.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10838">
</span>She seemed to have issues latching on in the hospital but was gaining
weight and didn’t get jaundice.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10839"> </span>I
noticed small squeaky noises coming from her but thought that it could be
normal from the suctioning of her mouth and throat following her delivery.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10840"> </span>We were discharged from the hospital two days
later and had her newborn check up that Saturday at her pediatricians’
office.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10841"> </span>Since her regular doctor was out
for the day we saw one of the partners.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10842">
</span>I asked him about her squeakiness and he said it was normal so I left it
at that.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10843"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10836">
</div>
<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/AVvXsEjkWJjHrQPe3wReXhzOcXoetk4ftgYu-Czu-FHBWpbOP01He-x82bSyxk8f1mBW9Sc1yUw7-9aWunp6qCM9hJJNeRe2IYibB_B8kdtgiyiyXRUdlWppa1s1T9SaJPjGy7wgc9W4vzYWK27T/s1600/CWL+Hazel1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkWJjHrQPe3wReXhzOcXoetk4ftgYu-Czu-FHBWpbOP01He-x82bSyxk8f1mBW9Sc1yUw7-9aWunp6qCM9hJJNeRe2IYibB_B8kdtgiyiyXRUdlWppa1s1T9SaJPjGy7wgc9W4vzYWK27T/s320/CWL+Hazel1.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hazel in the hospital.</td></tr>
</tbody></table>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10836">
</div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10845">
<span style="font-size: small;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10846"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10848">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10849">The
following Tuesday we were having newborn pictures taken and she just could not
calm down.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10850"> </span>She was starving but when I
would go to nurse her she would be in hysterics.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10851"> </span>She would choke.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10852"> </span>She would struggle to catch her breath.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10853"> </span>I made an appointment with our lactation
consultant that day who diagnosed her with a tongue tie.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10854"> </span>She also said that she had an “oral aversion”
from the aggressive suctioning at birth and didn’t know how to take a bottle,
let alone latch on to a breast.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10855"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10857">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10858"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10860">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10861">After
many tears and a long struggle in the office, we were sent home with
instructions on how to teach Hazel to latch properly.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10862"> </span>The following two days were terrible.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10863"> </span>We couldn’t get her to eat without choking
and the squeaky noise we noticed at birth was noticeably louder.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10864"> </span>I took voice recordings on my phone of her
nursing over night just in case I would need to play them for her doctor.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10865"> </span>That Thursday I was attempting to nurse her
when she choked again, this time struggling to breath and her lips turned
blue.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10866"> </span>It was at that moment that I knew
something wasn’t right.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10867"> </span>This was not
normal.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10868"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10870">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10871"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10873">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10874">I
called her doctor’s office and explained to them what was happening.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10875"> </span>The nurse said that because she sounded
congested to try a saline rinse and to suction and that that would help.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10876"> </span>He said to let them know in a few days how
she was doing.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10877"> </span>I insisted on her being
seen that day so they fit us in.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10878"> </span>She
was 8 days old.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10879"> </span>When we finally saw her
own doctor and I played the recordings for him he instantly said, “This sounds
like laryngomalacia or trachomalacia.”<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10880"> </span>I
had no idea what that was.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10881"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10873">
</div>
<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/AVvXsEi8ihrl4v4TuXtas6Qwtw4NwykON1nPcJOisGvIMoj9nWgr4km90A_woNj9PcKSHgsfrTxXyAejzWO5IjgrNNSoa97Hs5qu95tva5_nxxo3VNB0m3dJj0Gb8turUjLpagPMso1EWAuFu_j9/s1600/CWL+Hazel2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8ihrl4v4TuXtas6Qwtw4NwykON1nPcJOisGvIMoj9nWgr4km90A_woNj9PcKSHgsfrTxXyAejzWO5IjgrNNSoa97Hs5qu95tva5_nxxo3VNB0m3dJj0Gb8turUjLpagPMso1EWAuFu_j9/s320/CWL+Hazel2.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hazel during her sleep study.</td></tr>
</tbody></table>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10873">
</div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10883">
<span style="font-size: small;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10884"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10886">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10887">He
proceeded to ask what felt like a million questions.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10888"> </span>He sat there and held her tiny body on his
lap and watched her chest rise and fall with each breath she took.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10889"> </span>He asked how often she was choking with
feedings and I told him every single time.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10890">
</span>It was then that he referred us to Children’s Hospital and Medical
Center in Omaha, NE to see the pediatric ENT specialists there.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10891"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10893">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10894"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10896">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10897">The
very next day we were in the office, meeting with the ENT who I had actually
worked with in the past.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10898"> </span>I never thought
that I would be seeing her on the other side of things!<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10899"> </span>She scoped Hazel and said that she definitely
had Laryngomalacia but that she was confident it was mild.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10900"> </span>She also said that she had reflux and
referred us to Occupational therapy to learn different ways to breastfeed so
that she wouldn’t choke.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10901"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10903">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10904"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10906">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10907">Occupational
therapy told us that she showed all the clinical signs of aspirating, so they
had us thicken her breast milk with Gelmix.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10908">
</span>So began my exclusively pumping journey.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10909">
</span>We were thickening her bottles to nectar consistency.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10910"> </span>The OT said that because she was so little
and she showed such good clinical symptoms of aspirating it wasn’t necessary to
perform a swallow study and expose her to all of the radiation.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10911"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10913">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10914"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10916">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10917">After
a month and a half of the nectar thick milk and a few more follow ups with
Hazel’s ENT things seemed to be looking up.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10918">
</span>I noticed at night she still had a very loud stridor, and was still
struggling with feedings.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10919"> </span>Again, I took
a voice recording of the sounds she was making and this time played them for
her ENT.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10920"> </span>That was on a Tuesday.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10921"> </span>She was in for a sleep study two days later,
and was diagnosed with obstructive sleep apnea.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10922">
</span>We got the call with her diagnosis, and were told that she was scheduled
for surgery the following day for a supraglottoplasty.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10923"> </span>My husband and I were a mess.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10924"> </span>We just kept thinking, “Her doctors told us
they didn’t think she would need surgery!”</span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10926">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10927"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10929">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10930">Her
supra went very well.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10931"> </span>We stayed
overnight and were discharged the next morning. <span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10932"> </span>We continued on nectar thick fluids and about
a month and a half later I just didn’t feel like things were right.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10933"> </span>I pushed for a swallow study, her first.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10934"> </span>Even though the doctors and therapists said
that clinically she was fine, right in front of my eyes she aspirated the
nectar thick fluids we had been feeding her since 9 days old. <span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10935"> </span>It was devastating!<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10936"> </span>She still penetrated with honey thick but
could “tolerate it” so that’s what they put her on.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10937"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10939">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10940"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10942">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10943">Eventually
we got sick of the word “clinically”.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10944"> </span>Clinically
she showed no signs of reflux, aspiration, apnea.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10945"> </span>Nothing.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10946">
</span>It was so terrifying to realize that this whole time she was battling
these things and we, nor her doctors, and a clue.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10947"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10942">
</div>
<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/AVvXsEgUpCfak_mkn-9iqXm-JvMlzPoQhyzUq_WY-V2U4jQYpiatD8ZWzEjruiLw8ZE0yMv8fPA0R2j01W7z6IlUndshB4s5Uvvtx72lM_VVNERlBXbNiumcj1ja14axR-PriXbP2g0CLW1yVwEA/s1600/CWL+Hazel3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUpCfak_mkn-9iqXm-JvMlzPoQhyzUq_WY-V2U4jQYpiatD8ZWzEjruiLw8ZE0yMv8fPA0R2j01W7z6IlUndshB4s5Uvvtx72lM_VVNERlBXbNiumcj1ja14axR-PriXbP2g0CLW1yVwEA/s320/CWL+Hazel3.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hazel with her sister, June.</td></tr>
</tbody></table>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10942">
</div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10949">
<span style="font-size: small;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10950"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10952">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10953">Hazel
had another sleep study performed and was still having apnea’s during her
R.E.M. cycles, and is still having audible swallows and troubles with her
bottles.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10954"> </span>On October 4<sup id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10955">th</sup> she
had a triple scope to see if she has a laryngeal cleft, and to take biopsies to
see if something else could be causing her to aspirate.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10956"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10958">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10959"> </span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10961">
<span style="font-size: large;"><span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10962">We
are so thankful to have found this organization!<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10963"> </span>The network of families who are going through
the same things as us is comforting.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10964"> </span>It’s
a place to turn to after a hard day.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10965"> </span>We
are able to talk about what is going on and actually have the person on the
other end get it.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10966"> </span>Hazel is such a happy
baby and you would never know what she has been through if we didn’t talk about
it.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10967"> </span>We are hopeful that we can get some
answers and thankful that she<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10968"> </span>will have
no memories of everything.<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10969"> </span>Thank you so
much Coping With Laryngomalacia!!!<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10970"> </span></span></span></div>
<div id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10972">
<span id="yiv3265089410yui_3_16_0_ym19_1_1475621870800_10973" style="font-size: 10.0pt;"> </span></div>
Written by: Lisa Cernik, Hazel's Mom<br />
Photo credit: Lisa Cernik<br />
<br />
To learn more about Coping With LM, Inc.'s Pint-Sized Powerhouse Grant Program please visit CopingWithLM.org Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3203369196604961313.post-57296156578279985262016-08-13T17:11:00.001-07:002016-08-13T17:18:21.199-07:00Pint-Sized Powerhouse Grant Recipient: Carter<div dir="ltr" id="yiv8745129681yui_3_16_0_ym19_1_1470312284091_3242">
When
Carter was born, we immediately were concerned about his breathing. In
the hospital, I asked about his "stuffy" sound. The staff kept telling
us it was common after birth to sound stuffy because of all of the
fluids and that "he was brand new". After a week or so, we went back to
the doctor for our first check up. Again, I asked about his "stuffy"
sound, and was told to use the bulb and saline- he was probably just
contested. Carter slowly got louder and louder. I also noticed he began
to seemingly "struggle" when breathing. The sound never went away- just
got worst, he would gasp for air at times, and always sounded like he
was snoring no matter what position he was in. Again, we went for his 1
month check up and that is when our pediatrician told us he had
Laryngomalacia. At that time, the doctor did not refer us to an ENT and
said it would clear up on its own as he grew and the cartilage hardened.
I listened to the doctor, but something inside me didn't feel satisfied
with that answer. This is when I started doing research and came across Coping With Laryngomalacia, Inc.</div>
<div dir="ltr" id="yiv8745129681yui_3_16_0_ym19_1_1470312284091_3242">
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8cIGarDz7FBFqObVHqVj_gg6kDtEvtxiAuiJqzwPAqJqg0WpnPK-N0HnnRl0y3OQCw9c9QjjSgNSTvlHuoX58eec4JtXIBPLqatSivO7gfkT3ON9zQ8PC22Quv31cJNR3BzWEJIJDn0Hp/s1600/c2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8cIGarDz7FBFqObVHqVj_gg6kDtEvtxiAuiJqzwPAqJqg0WpnPK-N0HnnRl0y3OQCw9c9QjjSgNSTvlHuoX58eec4JtXIBPLqatSivO7gfkT3ON9zQ8PC22Quv31cJNR3BzWEJIJDn0Hp/s320/c2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mom & Carter</td></tr>
</tbody></table>
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<div dir="ltr" id="yiv8745129681yui_3_16_0_ym19_1_1470312284091_3242">
Once
I started reading on the <a href="http://www.copingwithlm.org/new-to-lm">Coping with LM website</a>, looked over the
resources, and read the blog, I heard Carters symptoms over and over. I
knew that my worry for my son was legitimate. I showed some of the
resources to my husband who agreed something was "off" about the first
opinion and tried to tell me to go get a second opinion. I didn't want
to be overly worried, because after all, the doctor told me it was
nothing to worry about. Later that same week, Carter stopped breathing
while I was feeding him. My husband was sitting beside me and panicked
as he heard him gasp for air when he finally started breathing! It was
then that my husband insisted on a second opinion, and I will FOREVER be
grateful for that! That second opinion could have saved our sweet boys
life! </div>
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<div dir="ltr" id="yiv8745129681yui_3_16_0_ym19_1_1470312284091_3242">
We
went to the second pediatrician, and she immediately called an ENT
after hearing Carter and seeing how much he struggled. The pediatrician
set up an appointment for us to see the ENT that same day, as well as
put Carter on a breathing monitor after he had a few blue spells and
stopped breathing momentarily. Once we arrived at the ENT, he did a
scope and proceeded to tell us that Carters case was "one of the worst
he has seen". That is not something you want to hear about your 1 month
old baby's airway! The ENT wanted us to monitor his breathing and blue
spells for 2 weeks, but expressed to us that surgery was most likely the
outcome. </div>
<div dir="ltr" id="yiv8745129681yui_3_16_0_ym19_1_1470312284091_3242">
</div>
<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/AVvXsEjDrb-lc6FNpvXTPpf6ZO54xEU7u93nYyhy_WLRZ2XQjR1OpaziBwCQAJ1V0bpRWlFMz9vjGLKwfFaY-Gv-C5mMSSVfQMrGufhavZtlf4nzKBvRZlf9jUcC53ugGt1JN050vpm59giAaUEc/s1600/c3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDrb-lc6FNpvXTPpf6ZO54xEU7u93nYyhy_WLRZ2XQjR1OpaziBwCQAJ1V0bpRWlFMz9vjGLKwfFaY-Gv-C5mMSSVfQMrGufhavZtlf4nzKBvRZlf9jUcC53ugGt1JN050vpm59giAaUEc/s320/c3.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dad & Carter</td></tr>
</tbody></table>
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During
those next 2 weeks, Carters monitor went off numerous times- sometimes
multiple times a day! Once we went back to the ENT he did another scope,
showing Carters cartilage not only "floppy" but wrapped around itself.
He was basically trying to breathe through a straw! He was scheduled for
surgery that next week at exactly 2 months old! </div>
<div dir="ltr" id="yiv8745129681yui_3_16_0_ym19_1_1470312284091_3242">
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<div dir="ltr" id="yiv8745129681yui_3_16_0_ym19_1_1470312284091_3242">
Our
surgery was stressful, but SO successful! Carter is thriving and well a
4 months old! Our last ENT appointment was successful and our ENT was
pleased with the progress he has made! This is the best news we could
have heard after such a scary start to our LM journey!!! His stridor has
gone down, and he retracts a lot less than before the surgery. Our ENT
is watching the cartilage closely to make sure it stiffens on its own!
It is our hope that Carter will be surgery free and be able to heal on
his own!</div>
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</div>
<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/AVvXsEgQhYMcSq_n7HB625LH4Lc9UnaQGTsioZuLkKo4itrDJA8N96igIQxPnyQasx3XEYXoqZxaprnh4UWvBW53C-dZE9XIBhd-QQzJFxmGurNDd7GdH_4q0NjUfCPU3Gf3-zRZu9kOxhafSgG0/s1600/c6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQhYMcSq_n7HB625LH4Lc9UnaQGTsioZuLkKo4itrDJA8N96igIQxPnyQasx3XEYXoqZxaprnh4UWvBW53C-dZE9XIBhd-QQzJFxmGurNDd7GdH_4q0NjUfCPU3Gf3-zRZu9kOxhafSgG0/s320/c6.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big Sister Sofia with Little Brother Carter</td></tr>
</tbody></table>
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<div dir="ltr" id="yiv8745129681yui_3_16_0_ym19_1_1470312284091_3242">
In
honor of World Airway Defects Day, our 4 year old decided to show her love for
her little brother by starting her first fundraiser. Big sister Sofia
made light blue "confetti" bracelets for family and friends to wear to
celebrate her little brother on World Airway Defect Day! I have to say, I
truly underestimated my amazing little princess....she mailed out 78
bracelets and closed out her GoFundMe account at $660!!!! Not a bad
first fundraiser for a 4 year old!! <a href="http://www.copingwithlm.org/donate">The profits were all given to Coping With LM, INC</a>. Sofia's wanted to raise money to help babies like her
brother with LM. She has the sweetest heart and I am so proud of all of
the time, love, and care she put into her fundraiser. Sofia stuffed
bracelets, personally signed every thank you card, and packaged each one
herself (with Mommy's help of course).</div>
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</div>
<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/AVvXsEj0g3st1_76oSzic8hZYa89KtlvPmGFBR2d5zcjN9W8yyN4yqsbqdFn7hO8jTSU9_EWctxwaoHSx1ZmMm3UbLOsFkdEMfkknS4xfG4HM3gWlaKNo5rOam-ypvnCU14hOtyBndOB0niQtW-g/s1600/c5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0g3st1_76oSzic8hZYa89KtlvPmGFBR2d5zcjN9W8yyN4yqsbqdFn7hO8jTSU9_EWctxwaoHSx1ZmMm3UbLOsFkdEMfkknS4xfG4HM3gWlaKNo5rOam-ypvnCU14hOtyBndOB0niQtW-g/s320/c5.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Confetti Bracelets</td></tr>
</tbody></table>
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<div dir="ltr" id="yiv8745129681yui_3_16_0_ym19_1_1470312284091_3242">
The
Acevedo family could not be more thankful for all that Coping with LM,
INC has done for our family. We found out recently that Carter was
chosen as a <a href="http://www.copingwithlm.org/program-app">Pint Size Powerhouse Grant recipient</a>. As the cost of
surgery, ENT appointments, scopes, etc can get extremely costly- this
took some of the burden off of our shoulders! We are so grateful for the
help during this time! I constantly use the <a href="https://www.facebook.com/CopingWithLM/?fref=nf&qsefr=1">Coping with LM, INC Facebook page</a> to ask questions and connect with other families going
through this journey. This non-profit has changed our journey with LM
and helped take some of the stress off with all of the fabulous
resources available! I don't know what I would have done without this
amazing support! The Acevedo's will forever love and support Coping with
LM, INC and all that it stands for! Thank you for ALL that you do!<br />
<br />
Written by: <br />
Courtney Acevedo, Carter's Mom. <br /> </div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3203369196604961313.post-11435209251625657152016-07-31T12:23:00.003-07:002016-07-31T12:23:56.740-07:00CWL Online Store: 20% Off Sale!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPIjhiqWZBLnT0mQGBubosX9YSYBSW0oY2i5eZtF5-3UToIK20HS74Csm7l-W01NAm2eLzWHZ7u8thi0SAtMjrt6wzMz9r2HupbID3Vre8SoqAeYesqcEEz9-UQNCW3-RuMbgtoxQMAloe/s1600/CWL+Shirt+Web+Pic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPIjhiqWZBLnT0mQGBubosX9YSYBSW0oY2i5eZtF5-3UToIK20HS74Csm7l-W01NAm2eLzWHZ7u8thi0SAtMjrt6wzMz9r2HupbID3Vre8SoqAeYesqcEEz9-UQNCW3-RuMbgtoxQMAloe/s640/CWL+Shirt+Web+Pic.jpg" width="640" /></a></div>
<br />
<br />
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="font-family: Arial,Helvetica,sans-serif;">Use coupon code<b> Summer20</b> for 20% off your entire retail purchase!</span></div>
<div style="text-align: center;">
<span style="font-family: Arial,Helvetica,sans-serif;">Offer is valid until 8/15/16 </span></div>
<div style="text-align: center;">
<a href="http://www.copingwithlm.org/#!store/cp9t"><span style="font-family: Arial,Helvetica,sans-serif;">SHOP NOW </span></a></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3203369196604961313.post-51224690624867495142016-07-20T04:54:00.001-07:002016-07-20T04:54:30.572-07:00#SpreadTheLovey Project: Your Help Is Needed!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZmdDM2LaBa7YpviKSnCSuLqWzj34f61j6ee8oODFyIeQwysVBQP6EkCnLE1ixz3Aq_erz_cvEy6WjCrMtVEnEKSx57Jwh_j3vn2aSM0dxNW1KaVjdf4uGRgLL3H07K_vx7UCAYyOPEw-K/s1600/CWL+STL+Project.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="314" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZmdDM2LaBa7YpviKSnCSuLqWzj34f61j6ee8oODFyIeQwysVBQP6EkCnLE1ixz3Aq_erz_cvEy6WjCrMtVEnEKSx57Jwh_j3vn2aSM0dxNW1KaVjdf4uGRgLL3H07K_vx7UCAYyOPEw-K/s320/CWL+STL+Project.jpeg" width="320" /></a></div>
<br /> We are thrilled to announce we have partnered with <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=157356534403" href="https://www.facebook.com/BabyJackCo/">Baby Jack & Co.</a>'s <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/spreadthelovey?source=feed_text&story_id=1223802634319043"><span class="_58cl">#</span><span class="_58cm">spreadthelovey</span></a> Project! <br />
<br />
Your donation of $18 per lovey will bring so much joy to a family,
during a difficult time in their lives. Cost includes bulk shipping /
delivery to donation. Don't worry about the shipping details, we will
make sure it gets sent to your Kindness Rep!<br /><br />Enter code KIND to
offset the pre-set shipping on our website. No matter what shipping info
you enter, it will be shipped to the donation recipient in 1 bulk
shipment.<br /><br />If you have interest in championing a donation drop off
to a local hospital that is near and dear to you, please email Kelley
at social@babyjackblankets.com for more details.<br />
<br />
*lovies will be included in our <a href="http://www.copingwithlm.org/#!program-app/c1qdl">Breathe Easy Care Package's.</a>*<br />
*Our goal is 100 lovies*<br />
<br />Unknownnoreply@blogger.com1