tag:blogger.com,1999:blog-67501604491469818532024-03-05T19:21:50.012-05:00Kids with VentsWe are a support and advocacy group for parents who have a child or teen who uses a ventilator full or part time (any type, including NIPPV.) Young adults who are on a vent from a childhood disorder or injury are also welcome to join!CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-6750160449146981853.post-58907966356231491422011-12-07T03:08:00.002-05:002012-04-09T19:07:01.585-04:00Kids with Vents Facebook Group<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbOFHXN1Kf4us_pB33zMocSzOAt_hMYbpPp4V1g8kCzUVb7OFU88c3hJeJVnC9jci8Old1KCuAAhQIc9bJ34K1S5EOpsIXMB3rV_r2Vrv9bMULaaqAQFPO326g4LrrXArogfeKeArskyU/s1600/kidswithventsfbgroup.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbOFHXN1Kf4us_pB33zMocSzOAt_hMYbpPp4V1g8kCzUVb7OFU88c3hJeJVnC9jci8Old1KCuAAhQIc9bJ34K1S5EOpsIXMB3rV_r2Vrv9bMULaaqAQFPO326g4LrrXArogfeKeArskyU/s1600/kidswithventsfbgroup.jpg" /></a><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">We started out as a support group on Yahoo Groups, and we recently added a Kids with Vents Facebook group as a convenience to our families. The Facebook group is very popular and we already have over 350 members! If your child uses a ventilator or Bipap/AVAPS, you are welcome to join us! Teens and young adults on a vent (or Bipap/AVAPS) from a childhood condition or injury are also welcome! </span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">To join the Kids with Vents Yahoo group, just click on the link above the slide show. To be added to the Kids with Vents Facebook Group, go to: </span><a href="https://www.facebook.com/groups/kids.w.vents/">https://www.facebook.com/groups/kids.w.vents/</a> <span style="font-family: 'Trebuchet MS', sans-serif;">and click on "Join Group." Hope to see you there!</span>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com2tag:blogger.com,1999:blog-6750160449146981853.post-35807299422612862382011-03-11T01:57:00.000-05:002011-03-11T01:57:13.163-05:00With Every Breath I Take<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqRqR7BZT-8WzlI3pHLxOVlTBvr3iHySQOFR2mGJW4lCba106ink3gk9viV2Be5fUhTyuJgluv3Tn1vAEJOfc3R5XyGpom3cRCur3MTmo9mJj6NHYJrNDFjM4gJPx8OOtE1sPlBp2lpsg/s1600/021011151327.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="182" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqRqR7BZT-8WzlI3pHLxOVlTBvr3iHySQOFR2mGJW4lCba106ink3gk9viV2Be5fUhTyuJgluv3Tn1vAEJOfc3R5XyGpom3cRCur3MTmo9mJj6NHYJrNDFjM4gJPx8OOtE1sPlBp2lpsg/s200/021011151327.jpg" width="200" /></a><span style="line-height: 16px; text-decoration: underline;"><strong style="line-height: 16px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Testify To Love - Avalon Lyrics</span></strong></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">All the colors of the rainbow</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">All of voices of the wind</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Every dream that reaches out</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">That reaches out to find where love begins</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Every word of every story</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Every star in every sky</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Every corner of creation lives to testify</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">For as long as I shall live</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">I will testify to love</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">I'll be a whitness in the silences when words are not enough</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><br style="line-height: 16px;" /></span></div>
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<strong style="line-height: 16px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">With every breath I take I will give thanks to God above</span></strong></div>
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<strong style="line-height: 16px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">For as long as I shall live</span></strong></div>
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<strong style="line-height: 16px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">I will testify to love</span></strong></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">From the mountains to the valleys</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">From the rivers to the sea</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Every hand that reaches out</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Every hand that reaches out to offer peace</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Every simple act of mercy</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">Every step to kingdom come</span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">All the Hope in every heart will speak what love has done.</span></div>
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<strong style="line-height: 16px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;">I love this song - especially the middle part. Sometimes I wonder why God allowed me to be born with CCHS, but when I hear "With every breath I take I will give thanks to God above", I realize it doesn't matter if those breaths come from a ventilator. I am God's original creation, he formed my every cell, I am His child, and I am perfect the way I am!</span></strong></div>
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<strong style="line-height: 16px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><br /></span></strong></div>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com1tag:blogger.com,1999:blog-6750160449146981853.post-16468346950021985322010-10-17T05:37:00.007-04:002010-10-17T16:20:07.791-04:00Heartmade Blessings<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihMA4VuD8wzjPK1gGnsK9Y1HmWOAXlLNKCThZ_rtWcOOqwz94fgDM5eYEL96EwwYIFwDPQhela1f0xXnSAFm-9Fvj7lirUzyx1Y3_K5Ma54qJqV19m4pS3Yi3ozvbnru9sUMZ7DdtkNhY/s1600/Heartmade+Blessings+Button.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihMA4VuD8wzjPK1gGnsK9Y1HmWOAXlLNKCThZ_rtWcOOqwz94fgDM5eYEL96EwwYIFwDPQhela1f0xXnSAFm-9Fvj7lirUzyx1Y3_K5Ma54qJqV19m4pS3Yi3ozvbnru9sUMZ7DdtkNhY/s1600/Heartmade+Blessings+Button.jpg" /></a></div>
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="Apple-style-span" style="font-size: 13px;"><span class="Apple-style-span" style="font-family: 'Times New Roman'; font-size: medium;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">"Heartmade Blessings is a world-wide group of volunteers dedicated to providing hand-crafted items to those people suffering a loss, tragedy, or going through a rough time that need to be reminded of the simple fact that people care. The organization was founded in March, 2001. </span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="color: blue;">Heartmade Blessings come from all the wonderful people who donate squares for afghans and bearghans. They are also made possible through the efforts of the warm, caring people who donate their time in assembling and organizing the distribution of these items to those in need. We truly believe these people are nothing short of a "blessing" themselves." </span></span></span></span></span></span></span><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-size: medium;"><a href="http://heartmadeblessings.org/"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><b>http://heartmadeblessings.org/</b></span></span></a></span></span><br />
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<span class="Apple-style-span" style="color: blue; font-family: 'Trebuchet MS', sans-serif;">I recently received one of Heartmade Blessings' beautiful Comfortghans while recovering from aspiration pneumonia. It was made just as my mom had requested, with my favorite colors and images (see photos below), and I absolutely LOVE it! Thank you, thank you, thank you to all the dedicated volunteers who made my wonderful Comfortghan - you truly have been a blessing to me! - Love, Deborah</span><br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4P0wu2kaoX2UKQyISIzHEORIIWyEnhIrhcMn6fLNKhKokI_0vsaMmgzR840J7q53dUWp0cRGIgz_xjUMRHdMhON2qS9SxZtBHiGlVc-Duq9Fi1Qv7xjda6d-c1n0l6kphSz8YH8fUnJw/s1600/photo+4.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="294" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4P0wu2kaoX2UKQyISIzHEORIIWyEnhIrhcMn6fLNKhKokI_0vsaMmgzR840J7q53dUWp0cRGIgz_xjUMRHdMhON2qS9SxZtBHiGlVc-Duq9Fi1Qv7xjda6d-c1n0l6kphSz8YH8fUnJw/s320/photo+4.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Beautiful Comfortghan</td></tr>
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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/AVvXsEhE5uzv-unzs-C2Ksrt_0LTAGdZLatqeRgJx8lTB1PeByB9n6xYYWIbC4kxURqAj1TeSMgfncC3CrpYhwDS_AYpB89Lk3FlbbS7srfxKkFte1uQwDvWBLHjKBqG2tFiEXxA-dJSYb63vVo/s1600/photo+3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE5uzv-unzs-C2Ksrt_0LTAGdZLatqeRgJx8lTB1PeByB9n6xYYWIbC4kxURqAj1TeSMgfncC3CrpYhwDS_AYpB89Lk3FlbbS7srfxKkFte1uQwDvWBLHjKBqG2tFiEXxA-dJSYb63vVo/s320/photo+3.JPG" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Warm and Toasty</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_DGvVaLfWs_py2XHbhT_EM81I-FbRoGqm2rMlU1qgDIK3A02BkWXftd9wHSQrA_4q4XKIepOossa4W_GA0sf9fgTumh5iihIVcDjHKmAsIa3AgHxYnP3rKXSNziAUChuIZ5ONG0e1Dt8/s1600/101710155012.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_DGvVaLfWs_py2XHbhT_EM81I-FbRoGqm2rMlU1qgDIK3A02BkWXftd9wHSQrA_4q4XKIepOossa4W_GA0sf9fgTumh5iihIVcDjHKmAsIa3AgHxYnP3rKXSNziAUChuIZ5ONG0e1Dt8/s400/101710155012.jpg" width="326" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Each square and the tote bag comes with a tag from the volunteer who made it. Thank you to all those who made my Comfortghan!</td></tr>
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<span class="Apple-style-span" style="color: blue; font-family: 'Trebuchet MS', sans-serif;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">If you would like to request a comfort afghan or a bearghan please email Heartmade Blessings at </span></span><a href="mailto:heartmadeblessings@nc.rr.com"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><b>heartmadeblessings@nc.rr.com</b></span></span></a><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> and provide the following information:</span></span><br />
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<span class="Apple-style-span" style="font-size: small;"></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">1. Your first and last name and e-address.</span><br />
<span class="Apple-style-span" style="color: blue;">2. Please indicate if you are requesting a Comfort Afghan, Operation Purple Heart afghan or Bearghan. Bearghans are sent for children ages infant to approximately 6-years of age. Children age three to six receive a smaller sized Comfort Afghan.</span><br />
<span class="Apple-style-span" style="color: blue;">3. Recipient's first and last name. </span><br />
<span class="Apple-style-span" style="color: blue;">4. Verified mailing address the assembler will be sending the comfort afghan to.</span><br />
<span class="Apple-style-span" style="color: blue;">5. Reason for the request (i.e., illness, bereavement, etc.).</span><br />
<b><span class="Apple-style-span" style="color: blue;">All information provided will kept confidential and will not be shared with anyone outside of Heartmade Blessings.</span></b><br />
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</div>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com1tag:blogger.com,1999:blog-6750160449146981853.post-80273893007616261592010-09-26T22:51:00.005-04:002010-09-26T23:13:34.300-04:00A Meeting of Friends!<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimB7ZkZS6fxvJAD5_auMyCciATFMo4AkFwyYcdPTkEOKgk5Hq2lkbp6LTDZpHkswKxMsRxHKuhiBUQV5rVejFCIy7JL6zOCjBgBENr0nRVWhhR8e9Oiq6YaVsGUHEs1tnodmfW4rnK0kk/s1600/photo+4.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="305" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimB7ZkZS6fxvJAD5_auMyCciATFMo4AkFwyYcdPTkEOKgk5Hq2lkbp6LTDZpHkswKxMsRxHKuhiBUQV5rVejFCIy7JL6zOCjBgBENr0nRVWhhR8e9Oiq6YaVsGUHEs1tnodmfW4rnK0kk/s320/photo+4.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Colton and Deborah</td></tr>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Lucy, one of our Mom moderators, and her husband Matt, brought Colton out to Ohio from North Carolina for some very specialized autonomic testing last week. It just happened to be at the same Children's hospital that I take Deborah to. We talked for several weeks about meeting, and then it almost didn't happen between Colton's hospital schedule and Deborah having a mild aspiration pneumonia! However, we finally did get to meet for a little while in the lobby, and we got some great pictures too!</span></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Lucy, Matt, and Colton</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Colton and Deborah Again</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI110D9RIvGkboYW3vZf0I_uVPK-UJdtM4QssI7RuPH1ULjB7lqEVNK36rZ9Q0vbSUTsKSYGhOulychaMgqFF4yzc48wSjS3CRozkyo8ELYhf4qAFLxKQtKKaopyJ_tAFNQ4N1K8_U6EA/s1600/photo+4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="245" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI110D9RIvGkboYW3vZf0I_uVPK-UJdtM4QssI7RuPH1ULjB7lqEVNK36rZ9Q0vbSUTsKSYGhOulychaMgqFF4yzc48wSjS3CRozkyo8ELYhf4qAFLxKQtKKaopyJ_tAFNQ4N1K8_U6EA/s320/photo+4.JPG" width="320" /></a></td></tr>
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Matt, Colton, Lucy, Deborah, and Patricia</td></tr>
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</div>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com1tag:blogger.com,1999:blog-6750160449146981853.post-68120496256538292292010-09-17T10:37:00.000-04:002010-09-17T10:37:20.581-04:00Carmen's Story<br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">My name is Liz, and my daughter Carmen is four years old. Carmen was diagnosed with late-onset CCHS (Congenital Central Hypoventilation Syndrome) when she was 16 months old.</span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">We live in Tennessee, but traveled to San Fransisco in December 2007 to visit family. Carmen had a cold and was very congested. In the early morning, after Christmas Day, I woke Carmen to try to get her to cough up her secretions. She aspirated and went limp in my arms. My brother-in-law is an ER physician, and he was resuscitating Carmen while my sister called 911.</span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Carmen was admitted to UCSF Children's Hospital, diagnosed with RSV, and was put on a ventilator. She failed two extubations, and the doctors were telling us that something else was wrong. Carmen had every test imaginable (X-rays, MRI, EEG, echocardiogram, and a sleep study, etc.) to rule things out. The sleep study showed that she was retaining CO2 only while she was asleep. The doctors began to prepare us for the possibility of Carmen having CCHS, which is a very rare genetic disorder. She was trached on January 17, 2008, and a week later we learned that Carmen does have a PHOX2B mutation of 20/25.</span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">After 33 days in the PICU at UCSF, we took a medical flight to Vanderbilt Medical Center. We were there for about a week to learn about trach care and the ventilator, before returning home. We have never had home nursing care for Carmen, because we have not qualified for any assistance, and my husband's insurance (BCBS) does not cover private nursing services. I quit my job so I could care for Carmen full time.</span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Carmen is an only child. She attends a community based inclusion preschool so she can interact with her peers. She does not have any developmental delays, so our public school system does not think she need to be in school yet. They will only begin providing nursing services at school once she begins Kindergarten. So, I go to school with her to provide her trach care needs and to hook up her ventilator when she naps. Carmen is strong-willed, bright, sassy, and fun! Despite her trach, she can be extremely loud, even without her speaking valve. We look forward to the day she can be decannulated, and either be ventilated via Bipap or with a diaphragmatic pacemaker.</span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></div>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com1tag:blogger.com,1999:blog-6750160449146981853.post-60955395658518989362010-08-22T21:56:00.002-04:002010-08-22T21:59:37.547-04:00Hannah's Story<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3MNQctn58kqkg2HOUcDXHQmLFwXuzESypwJ3ip2cKkuWElbg0LWvY8rw8fwhW6Jc6Iia_uJLrhLj3pAGMqXUaUeWvDm4GIBZczJ4eoCLv7zkLXIJbNqk4ShuDO9SnRUj4NiYhi08b9FM/s1600/IMG-354920Large.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3MNQctn58kqkg2HOUcDXHQmLFwXuzESypwJ3ip2cKkuWElbg0LWvY8rw8fwhW6Jc6Iia_uJLrhLj3pAGMqXUaUeWvDm4GIBZczJ4eoCLv7zkLXIJbNqk4ShuDO9SnRUj4NiYhi08b9FM/s320/IMG-354920Large.JPG" /></a></div>
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; white-space: pre-wrap;"><span class="Apple-style-span" style="color: blue;">My name is Joan, and I am from Philippines. My daughter, Hannah, who just turned three, has Congenital Central Hypoventilation Syndrome (CCHS.) She has a tracheostomy and uses a ventilator when asleep. During my pregnancy, I didn't suspect any problems until a week before I gave birth. I was diagnosed with polyhydramnios. My OB said I had too much amniotic fluid. I've never heard of such but she told me not to worry. I did worry though, because that was something not normal right? So I Googled what that means and how it affects the baby. From what I read, having polyhydramnios may mean the baby having a congenital problem. Having no history of a congenital problem in either my or my husband's family, I was convinced to just ignore what I read and stay calm. A week later, I gave birth to a full term beautiful baby girl via C-section.</span></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; white-space: pre-wrap;"><span class="Apple-style-span" style="color: blue;"></span></span><span class="Apple-style-span" style="color: blue; font-family: 'Trebuchet MS', sans-serif; white-space: pre-wrap;">After waking up from sedation, I was expecting to see my baby. Little did I know that while I was asleep, Hannah was already under observation. The doctor then informed us that they needed to transfer Hannah to the NICU. She had pneumonia, had to be intubated, and put on a mechanical ventilator. That day started the saddest nine months of my life. When Hannah was three weeks old, after a number of failed extubations and series of neurological tests, a sleep doctor concluded that Hannah might have what they call CCHS (Congenital Central Hypoventilation Syndrome.) They said that the best option for her to have a tracheostomy tube and stay in the hospital until she become more stable and we were ready to bring her home with all the necessary equipment. She was already 6 months old when the CCHS diagnosis was confirmed. The PHOX2B genetic test is not available in our country and we had to send her blood sample abroad to have it confirmed. We weren't able to do it earlier because the test is very expensive.</span><br />
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<span class="Apple-style-span" style="color: blue; font-family: 'Trebuchet MS', sans-serif; white-space: pre-wrap;"></span><span class="Apple-style-span" style="color: blue; font-family: 'Trebuchet MS', sans-serif; white-space: pre-wrap;">It took us 9 long months to prepare for Hannah's homecoming. It was never easy. There was so much to be done, and a huge amount of money was needed for us to settle our hospital bill (no insurance nor good health care here) and to acquire all the necessary equipment. We had nothing left, because the first 2 weeks of Hannah's stay in the hospital had already depleted all our money. My husband and I were even forced to resign from work. All we had then was our love for Hannah and our faith that God would see us through. Indeed, God is good! He called on so many good Samaritans to help us. He made it possible for us to acquire all of Hannah's equipment, and He made it possible for us to bring Hannah home!</span><br />
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<span class="Apple-style-span" style="color: blue; font-family: 'Trebuchet MS', sans-serif; white-space: pre-wrap;"></span><span class="Apple-style-span" style="color: blue; font-family: 'Trebuchet MS', sans-serif; white-space: pre-wrap;">Now, Hannah's 3 years old already! We're still struggling, but surviving. She is a very active little girl, though she still hasn't spoken a word. She is fed by mouth but couldn't eat table food until recently, and is still eating pureed foods. She has had many bouts of infections, but only once has she ever required to be brought back to the hospital. That happened just recently. It was very scary, and staying again in the hospital made me relive all the sadness that I have in my heart because of Hannah's condition. I am very happy to be part of Kids with Vents and thank you in advance for all the things I will learn from all of you. I hope I can share something for you to learn too. God bless all our vent families!</span>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com1tag:blogger.com,1999:blog-6750160449146981853.post-19073764872547669632010-08-22T18:21:00.000-04:002010-08-22T18:21:22.417-04:00Michael's Story<br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Hello, my name is Michael. I was born with a genetic disease called Duchenne Muscular Dystrophy. DMD is a disease that causes the weakening of skeletal muscles, respiratory system, and cardiomyopathy (weakening of the cardiac muscle). There is no known cure for DMD and the prognosis is death. When I was a young boy, somewhere around six or seven years of age, I was told that I probably would not live past the age of 19. I praise the Lord every day, thanking him that I surpassed the doctor’s projection. Today, I’m blessed; see I just turned 33 this past spring which is a milestone for a person having DMD.</span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Through the years, DMD has taken its toll on my body. From the age of seven, when I could still walk, my muscles gradually began to weaken. As a result, I fell a lot because my legs were weak. It seemed that when I walked on hard surfaces like concrete, pavement, and gravel I would fall. I continued to stumble and fall till the age of 12 years old, when I became dependent on a wheelchair. </span></span><span class="Apple-style-span" style="font-family: monospace; line-height: 18px; white-space: pre-wrap;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">I lived with my parents until I was 21 years old. At that time I was more determined than ever to make something out of my life despite having DMD. I moved to Woodrow Wilson Rehabilitation Center and began studing Mental Health/Human Services. I graduated there in 2001 with an Associates Degree and Certificate in Peer Mediation through Blue Ridge Community College. I was also married to my wonderful wife Robin by then. In that same year I graduated Robin and I rented an Apartment in Stuarts Draft, Virginia. During that time, I lost the ability to feed myself, and I lost a great deal of weight. I also began having breathing difficulties along with severe Central Sleep Apnea. I began using a BiPap Machine at night and eventually a Pneumobelt in 2003. In 2005 I was placed on a Trach and Ventilator after a serious infection. </span></span><span class="Apple-style-span" style="line-height: normal; white-space: normal;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">The doctors told Robin that she had to make a choice. She could either have me trached or they could administer comfort measures and let me die. They asked me if I wanted to be trached, and I said yes. I was facing death, but I heard God tell me “It’s not your time, your work is not done; I am not done with you.” So, I was trached and vented a few hours later. I started improving immediately, and by the end of that week, I was well enough to go home.</span></span></span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Once I got home, I was scared but glad to be home. At first, I was not able to get out of bed or eat. This lasted about three weeks, sleeping and drinking Ensure four times a day. Finally, I got well enough to get out of bed however still drinking ensure. A few days later, I said to heck with this stinking Ensure. I got my attendant to go to McDonalds and get me a cheeseburger and French fries. Man that was the best burger I ever ate! Eventually, things got better and I was gaining weight and breathing great, Hallelujah!</span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Then, about two years ago, I developed Congestive Heart Failure from my ever weakening heart. I’ve been a Christian for several years, and my relationship with Jesus has enabled me to get through many trials. I have salvation through him. This was reality slapping me in the face; it was time to get serious about being a Christian and stop playing Christian. The news broke my heart; my heart is literally broken which is how the Lord wants it! I was given a 70 percent chance of dying from sudden death from a heart attack. This is the second year of that prognosis and my Ejection Fraction is dangerously low at 17 percent, but who cares about numbers. By the way this ventilator and oxygen are just accessories, and not my life support. Let me say this, Jesus Christ is my life support! Amen!</span></span></div>
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<span class="Apple-style-span" style="line-height: 18px; white-space: pre-wrap;"><b><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></b></span></div>
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<span class="Apple-style-span" style="line-height: 18px; white-space: pre-wrap;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">I began to see the annointing God had on my life. I began taking Online Classes in persuit of a BA in Pastoral Ministries. The same year I came up with a Concept Christian Ministry for the Disabled. Today, we are called Spirit Roller Ministries and we are 501c3 Non Profit; we are also an Affiliate with Joni and Friends Ministries. We have been running a very successful program called MedEvange. We take used/donated Medical Equipment then we give it away free of charge to the needy. We also have a Mentoring Service, Couseling, Advocacy and Empowering them with the Word of God.</span></span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">The latest bout with my health came this past March, when I started having heart rates in the lower 30's. This condition is called bradycardia which means my heart is too weak to keep a regular rhythm. It was time for device intervention, and the doctors suggested a pacemaker. They said that the Pacemaker would prevent my heart rhythm going below 60 beats per minute; several doctors were skeptical while my Cardiologist remained optimistic, so I had this major decision to make. I chose the Pacemaker to have more time on this earth to serve Jesus and to be there for my wife and mother. </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">I was scheduled for April 30. </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">They rolled me down to the Heart Cath Lab, slapped the monitors on me and transferred my onto the operating table. I heard the doctor come in as the meds were administered; I only remember 2 things as I went out, someone turning this crazy music on and the doctor say, “someone bring me my knives.” I was in surgery for 4 hours before waking up and saying, “Are ya’ll done yet?” “Closing you up now Mr. Keen,” someone replied.” </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">The following evening I was so peaceful. I stayed at the hospital with my mother and we watched the heart monitor and cried for joy; the surgery was a success and my rhythms were slow and steady. “Mom,” I said “now I have more time to spend with you and Robin.” “I know,” she said as she rubbed back tears in her eyes. I woke later that night to my mother whispering, “Thank you Lord for lending me my son a little while longer.”</span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">We adopted Ryan when he was six years old, before he had a trach or vent. He did have many different abilities like my son, Kyle, whom we had already adopted. I love giving a family to a child that no one wants, and watching them get enjoyment out of the little things we take for granted.</span></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">I remember telling my husband that I didn't think I could adopt a child with a trach or vent, because I knew nothing about them. God had other plans! We took Ryan to the children's hospital for surgery, and he went into respiratory arrest, was intubated, and admitted to the PICU. He was then trached for laryngomalacia. We miss Ryan's cute little laugh and his cry, but he is healthier with the trach.</span></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Things went okay for the next couple of years, but Ryan's need for O2 kept increasing. Another sleep study was done, and he stopped breathing 504 times - no wonder he couldn't sleep! Since then, Ryan has used a ventilator whenever he is asleep (night time and naps.) Sometimes the vent is a pain and annoying, but it is also his best friend. Ryan's need for O2 went way down, and he sleeps much better on the vent. He also had a laryngotracheal separation to stop his chronic aspiration, and has been much healthier since then.</span></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Ryan was born with Bilateral Open Lipped Schizencephaly. He also has CP, dystonia, developmental delays, and Lennox-Gastaut Syndrome (a severe seizure disorder.) He is also non-verbal, blind, has a G and J-tube, and is 100% J-tube fed. But, please remember to look past Ryan's disabilities, and see his huge smile and what a happy boy he is everyday!</span></span><br />
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com4tag:blogger.com,1999:blog-6750160449146981853.post-40292124875676414092010-08-10T05:18:00.007-04:002010-08-10T05:34:10.363-04:00Kimi's Story<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDT0o43ia5xsXgnvOFtP_oZP9uvaLxWs1TEhDV7aAnAPb7n5i_UJ5FI6ki1DM5FpLnoM9k9BRlboNAsz3M3h9VlB-gy1RLKXm_QvTZM5Uwm8KSspkCbIfYIH8qoiu3oSU9YbepsqrVPF0/s1600/CIMG1516.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDT0o43ia5xsXgnvOFtP_oZP9uvaLxWs1TEhDV7aAnAPb7n5i_UJ5FI6ki1DM5FpLnoM9k9BRlboNAsz3M3h9VlB-gy1RLKXm_QvTZM5Uwm8KSspkCbIfYIH8qoiu3oSU9YbepsqrVPF0/s320/CIMG1516.JPG" /></a></div>
<span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">My name is Kimi, and I'm a 31 year old with autosomal dominant </span></span></span></span></span><span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="yshortcuts" id="lw_1281428461_0" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; border-bottom-color: initial; border-bottom-style: none; border-bottom-width: initial; cursor: pointer;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">Emery Dreifuss Muscular Dystrophy</span></span></span></span></span></span><span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">. EDMD is one of the more rare </span></span></span></span></span><span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="yshortcuts" id="lw_1281428461_1" style="border-bottom-color: rgb(54, 99, 136); border-bottom-style: dotted; border-bottom-width: 2px; cursor: pointer;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">muscular dystrophies</span></span></span></span></span></span><span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">. </span></span></span></span></span><span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">I was actually first diagnosed with Spinal Muscular Atrophy, but was recently re-diagnosed with EDMD (long story). I've experienced a faster progression of EDMD than is typical. I was able to walk as a young child, but received my "driver's licence" at the age of 5. I was completely wheelchair dependent by the age of 8. I started experiencing respiratory issues at the age of 11. From the age of 11 to 13, I was in and out of the hospital for pneumonia. My saving grace was the Bipap. Once I started using Bipap at night at the age of 13, I felt much more rested and the occurrence of respiratory illness decreased tremendously. During this time I also started experiencing cardiac issues, which at the time were thought to be unrelated to my </span></span></span></span></span><span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="yshortcuts" id="lw_1281428461_3"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">neuromuscular disease</span></span></span></span></span></span><span class="Apple-style-span" style="font-family: Arial; font-size: small;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">. It later turned out they were part of the EDMD progression. </span></span></span></span></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">I was pretty stable until my Junior year of college. I got very sick during the 2nd semester of my Junior year, and ended up being hospitalized for 6 months. This is when I was trached and vented. I also received my G/J tube during this hospitalization. I use the </span></span></span></span><span class="yshortcuts" id="lw_1281428461_4"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">LTV</span></span></span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;"> 950 and have a 5.5 pediatric Bivona cuffed trach. At first I was on the vent 24/7, but after 4 years I was able to sprint off the vent during the day. I now still sprint off the vent on a </span></span></span></span><span class="yshortcuts" id="lw_1281428461_5"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">Passy Muir valve</span></span></span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;"> during the day, but must take vent breaks. In addition to the vent/trach, I have a pacemaker, severe </span></span></span></span><span class="yshortcuts" id="lw_1281428461_6" style="border-bottom-color: rgb(54, 99, 136); border-bottom-style: dotted; border-bottom-width: 2px; cursor: pointer;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">scoliosis</span></span></span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">, motility issues, </span></span></span></span><span class="yshortcuts" id="lw_1281428461_7" style="border-bottom-color: rgb(54, 99, 136); border-bottom-style: dotted; border-bottom-width: 2px; cursor: pointer;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">GERD</span></span></span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">, and chronic abdominal, neck, and back pain. </span></span></span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></span><br />
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">Now to the fun stuff... I enjoy hanging out with my great friends, shopping, mini scrap booking, card making (visit my Etsy site </span></span></span></span><a href="http://www.craftykfox.etsy.com/" rel="nofollow" target="_blank"><span class="yshortcuts" id="lw_1281428461_8"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">www.craftykfox.etsy.com</span></span></span></span></span></a><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">), music, and </span></span></span></span><span class="yshortcuts" id="lw_1281428461_9"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">Dunkin Donuts</span></span></span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;"> Iced Mocha Lattes. I graduated Summa Cum Laude with a BS in Bio/Chem from Immaculata Univ, and pursued my Masters in Bioethics at UPENN. I run a world wide Yahoo group for people affected by SMA called SMAFRIENDS. I also run the Yahoo group for my college sorority's alums. I volunteer for the state of PA by serving on a committee that advises the Governor and the Secretary of Public of Welfare on the Medicaid Waivers which allow disabled citizens to live independently in the community by providing them with nurses and/or attendants. I mainly advocate for those on vents. Another highlight of my life was being engaged to a wonderful guy named Eric, who unfortunately passed away before we could get married. </span></span></span></span></div>
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></span><br />
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;">My number one goal in life is to inspire others to do their best. I personally need to learn how to be thankful for what I have, and hopefully in the process teach others to do the same. Oh, and I don't want to grow up and be just ordinary!</span></span></span></span></div>
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</div>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com0tag:blogger.com,1999:blog-6750160449146981853.post-86938447567829310492010-08-10T02:38:00.005-04:002010-08-10T03:14:59.342-04:00We Got Something More (by Lori Borgman)<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKFoIOUNrWOB7P_CkK7dJMCSrtIiroaTeZwGNX-lbweHelj3VOi78HPyx13slCb3H8cFHNcRAYEPMWAEWzoqdkZg9dlFHg8idirCvSPykaqJG-t4_SGweU2VoosrXuNQlHJnjsQlzfxjA/s1600/yupiramos100400109.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="131" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKFoIOUNrWOB7P_CkK7dJMCSrtIiroaTeZwGNX-lbweHelj3VOi78HPyx13slCb3H8cFHNcRAYEPMWAEWzoqdkZg9dlFHg8idirCvSPykaqJG-t4_SGweU2VoosrXuNQlHJnjsQlzfxjA/s200/yupiramos100400109.jpg" width="200" /></a></div>
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="yshortcuts" id="lw_1281408810_1"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">ten fingers</span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">and ten toes. Of course, that's what she says. That's what mothers have always said. </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Mothers lie.</span></span><br />
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose,</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="yshortcuts" id="lw_1281408810_2"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">beautiful eyes</span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">and satin skin. Every mother wants a baby so gorgeous that people will pity the</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="yshortcuts" id="lw_1281408810_3"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Gerber baby</span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">I am a woman who watches the</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="yshortcuts" id="lw_1281408810_4" style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-color: initial; border-bottom-style: none; border-bottom-width: initial; cursor: pointer;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Olympics</span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><b></b></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">(Lori Borgman is a newspaper columnist and author. You can find her at:</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="yshortcuts" id="lw_1281408810_5"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><a href="http://www.loriborgman.com/" target="_blank"><span class="Apple-style-span" style="color: blue;">www.loriborgman.com</span></a><span class="Apple-style-span" style="color: blue;">)</span></span></span><br />
<span class="yshortcuts" id="lw_1281408810_5"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com0tag:blogger.com,1999:blog-6750160449146981853.post-71938935784097325662010-08-08T21:13:00.002-04:002010-08-09T18:28:21.761-04:00Evan's Story<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVkZwfci__iiSucg4JUPo0XvQsnOpJKgFHUfr87tiptNM5Zx4pBS3jX80Ep365l0OTa3K4aThy3Et_JWzi8xf_D1SFAD3rg5L__KWImg8QZGRcaOISF0hh8nn6bip5yJ4bj2QwGMN8pc4/s1600/evan+and+new+little+kitty.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVkZwfci__iiSucg4JUPo0XvQsnOpJKgFHUfr87tiptNM5Zx4pBS3jX80Ep365l0OTa3K4aThy3Et_JWzi8xf_D1SFAD3rg5L__KWImg8QZGRcaOISF0hh8nn6bip5yJ4bj2QwGMN8pc4/s200/evan+and+new+little+kitty.jpg" width="198" /></a></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Evan was born in August of 1996 on my due date. The only complication of his birth was that the cord was wrapped around his neck. He was 7 lbs 7 oz and all boy. He was born with dark brown hair which all fell out and was replaced with snow white curls. Evan was my third child and both of my older children were pretty easy to raise. Evan however was born with attitude! </span></span></span></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Evan was a skinny baby and a skinny boy, and then one day he started to gain weight. A LOT of weight. And everyone kept asking me why. I had him tested for </span></span></span><span class="yshortcuts" id="lw_1281312308_1"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">diabetes </span></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">and </span></span></span><span class="yshortcuts" id="lw_1281312308_2"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">underactive thyroid. A</span></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">ll of his tests came back negative, but at 9 years old he weighed almost 110 pounds. Evan always had problems breathing, but we were always told it was </span></span></span><span class="yshortcuts" id="lw_1281312308_3" style="border-bottom-color: rgb(54, 99, 136); border-bottom-style: dotted; border-bottom-width: 2px; cursor: pointer;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">asthma</span></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> and or </span></span></span><span class="yshortcuts" id="lw_1281312308_4"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">bronchitis</span></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">. Later, when he was overweight, we were told it was his weight. Evan's </span></span></span><span class="yshortcuts" id="lw_1281312308_5" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; border-bottom-color: initial; border-bottom-style: none; border-bottom-width: initial; cursor: pointer;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">breathing problems</span></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> were not consistent with asthma, however. He would scream "I can't breathe!" and I thought it might be anxiety related to his beghavior problems. We have a family history of bi-polar disorder and OCD, whcih he seemed to be displaying with his anger and sadness. By the time he was twelve, though, he was calming down, his behavior was excellent, he was getting taller, and was slimming down. I thought the bad times were behind us.</span></span></span></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="color: blue;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Then, one day Evan went to school and, on a dare, he downed 32 oz of tequila straight. He was not breathing on his own, and was rushed to the hospital where the doctor's said there was nothing they could do for him. Evan survived, but an </span></span></span><span class="yshortcuts" id="lw_1281312308_6"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">MRI</span></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> showed that Evan had a </span></span></span><span class="yshortcuts" id="lw_1281312308_7" style="border-bottom-color: rgb(54, 99, 136); border-bottom-style: dotted; border-bottom-width: 2px; cursor: pointer;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">brain tumor</span></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> on his brain stem. 48 hours later the tumor was removed. The neurosurgeon said it was a </span></span></span><span class="Apple-style-span" style="line-height: 18px;"><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">juvenile pilocytic astrocytoma,</span></span></span></span><span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> not malignant, and that Evan would never have to worry about it growing back.</span></span></span></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">The location of the tumor, however, made the surgery very difficult, and there was major bruising to his brain stem nerves during it's removal. Evan has been in recovery since May 2009. He has regained most of his vision and hearing, he can walk in almost a straight line, and he can vocalize just fine. However, he can't move his tongue, he can't swallow, and when he falls asleep he forgets to breathe on his own. So, Evan has a tracheostomy so he can be ventilated at night, and gets all his nutrition through a feeding tube. </span></span></span></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Evan spends his time, and uses his intelligence, working with computers. He will be 14 years old next week, and is trying to be more independent. We take it day by day, and try to keep him healthy and happy.</span></span></span></div>
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<span class="Apple-style-span" style="background-color: transparent;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><b><span class="Apple-style-span" style="color: blue;"><br /></span></b></span></span></div>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com0tag:blogger.com,1999:blog-6750160449146981853.post-18113596375604335462010-08-07T21:47:00.002-04:002010-08-07T21:49:09.327-04:00Colton's Story<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYr7VowYIkUYQfNenSzscT875O7vhDUvK4n5oecYXzcQcbrsTMlQ6Am87vv6IrkSBQd45jrbGF0_aGr0vBTLSBwlGcuQe4xGbdiW79hPG9hKFmxQhOVnAhyphenhyphengB9llmewpJFQco34c1WrHc/s1600/Colton_DSCF000018.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYr7VowYIkUYQfNenSzscT875O7vhDUvK4n5oecYXzcQcbrsTMlQ6Am87vv6IrkSBQd45jrbGF0_aGr0vBTLSBwlGcuQe4xGbdiW79hPG9hKFmxQhOVnAhyphenhyphengB9llmewpJFQco34c1WrHc/s320/Colton_DSCF000018.JPG" /></a></div>
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<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Colton has been a fighter in every sense of the word since his birth in 2008.</span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">He has led us on a journey, teaching many to think outside the box in terms of medical conditions and abilities.</span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">In the first year of life Colton acquired a custom tracheostomy tube, a ventilator, a </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="yshortcuts" id="lw_1281229828_0"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">feeding tube</span></span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">, glasses, many medications, and many diagnoses. One of the major diagnoses is rare and called "Autonomic Nervous System Disorder" that affects literally almost every system in his body.</span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Autonomic medicine is all about the </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="yshortcuts" id="lw_1281229828_1"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">central part of the brain</span></span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> that controls our automatic functions that we don't think about. When this short circuits, the body reacts to things it thinks are happening, but aren't always. Most of us, if we try to hold our breath, feel when we have to stop and take a breath. Colton and kids like him don't feel like they are suffocating. They may breathe, but not very deeply. Or, they don't always feel thirsty even though their bodies are literally dying of dehydration. </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">It is a rare specialty and even rarer in pediatrics, and there are very few physicians that can even explain the disorder.</span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">The medical community told our family recently, that in this field the science is very young, and science must make advancements before there could be any answers.</span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span></span><br />
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<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></div>
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<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">We take each day for the best it can offer, and hope the next will be equally good or better.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">We are aware that the instability of the </span></span><span class="yshortcuts" id="lw_1281229828_2"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">autonomic nervous system</span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> within Colton’s body is something we do not understand, nor does the medical community. We never take the next day for granted.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Everyday Colton greets us with a glowing smile; he does not understand that he is anything other than a two year old little boy who loves everyone he meets.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">His body doesn’t agree with the speed that he wants to go, so we have to place restrictions on him so he does not overstress his body.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Colton always feels hungry because of his autonomic dysfunction, to such a degree that a lock is on the refrigerator, along with a restricted diet due to constant weight gain.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span></span></div>
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<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></div>
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<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">New transportation equipment is being ordered to enable him to have the necessary equipment Colton needs at all times. We hope to travel to </span></span><span class="yshortcuts" id="lw_1281229828_3"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Ohio</span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> for testing in the beginning of September for more answers, and are still awaiting final approval from Medicaid that they will cover the out of state funding.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Colton, like so many other chronically ill and medically fragile children, relies on Medicaid to cover most of the expensive medical equipment and medications that would otherwise not be affordable. Yet there is still so much they do not cover.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Our family, like many others with </span></span><span class="yshortcuts" id="lw_1281229828_4"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">special needs children,</span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> are </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">living on a very restricted budget </span></span></span><span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">due to frequent illnesses and medical appointments (that are often a long distance from home.) Soon we will need a vehicle with modifications to meet Colton's needs.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> Despit</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">e all of this, we try to keep things as normal as we can for all of our family.</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">We have nursing assistance for Colton, which helps us tremendously to give Emma (who is 3) the individual time she needs. We also take some time alone as a couple. We were an ordinary family, who thought we were going to have a typical baby boy. Colton is way beyond typical - he is a fighter, a miracle, a brother, and a son who is LOVED!</span></span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><br /></span></span></div>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com0tag:blogger.com,1999:blog-6750160449146981853.post-72298595473110055712010-07-31T09:12:00.001-04:002010-08-01T00:39:42.292-04:00Deborah's Story<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3kWy_V-UpWMAgSmFFSIQnxK-GGLsT7ikGI17GfjKphfDDwnU1gG_rLCr_AliHLLP2YWoRxv670uMyboSW6L4ShMJ1LuBvy9PkpDhEtZJJFBy2BaAtzCrWgosMQLoQacC38kvl56ZV0OY/s1600/042910114343+(4).jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3kWy_V-UpWMAgSmFFSIQnxK-GGLsT7ikGI17GfjKphfDDwnU1gG_rLCr_AliHLLP2YWoRxv670uMyboSW6L4ShMJ1LuBvy9PkpDhEtZJJFBy2BaAtzCrWgosMQLoQacC38kvl56ZV0OY/s200/042910114343+(4).jpg" width="200" /></a></div>
<span class="Apple-style-span" style="line-height: 23px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Hi! I'm a young adult with CCHS (Congenital Central Hypoventilation Syndrome.) Normally, you don't have to think about breathing - the autonomic center in your brain tells your body to breathe even when you are asleep. In kids born with CCHS, however, something goes wrong with this center, and they "forget" to breathe, especially while asleep. </span></span></span><span class="Apple-style-span" style="line-height: 17px;"><span style="font-style: inherit; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">CCHS used to be called Ondine's Curse (from the German myth about Ondine, a water nymph who curses her unfaithful husband to cease breathing if he should ever fall asleep again.) </span></span></span></span></span></span></span></span><span class="Apple-style-span" style="line-height: 17px;"><span style="font-style: inherit; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span></span></span></span></span></span></span><span class="Apple-style-span" style="line-height: 17px;"><span style="font-style: inherit; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="line-height: 17px;"><span style="font-style: inherit; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">I have a trach and am on an LTV ventilator 24/7. I also have a J-tube for continuous feeds, an</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">d use a wheelchair to help me get around. I take several medications every day, and get weekly SQ IgG infusions of Hizentra. I see a number of specialists (pulmonary, ENT, neurology, and cardiology, etc.) to help keep me healthy, and I also work with some terrific therapists in occupational, physical, and speech therapy.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span class="Apple-style-span" style="line-height: 17px;"><span style="font-style: inherit; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="line-height: 17px;"><span style="font-style: inherit; line-height: 17px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span style="line-height: 21px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com0tag:blogger.com,1999:blog-6750160449146981853.post-50969393924836773922010-07-31T08:59:00.002-04:002010-07-31T09:03:24.988-04:00Josh's Story<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXNiUnsGc2hESZSluX8vpnqvijiOALArtYBp4yaSD3rGMN7S4va3qGtpgDsgHeUllQwucejZ775SdBoYiQpzDbZAn8UYXRyEA_wOLqp3YNE2hgbWO-j-ONoO5rv4BGNc_2aqdbUTv-ciI/s1600/l.COSlxZVNziyujQJc.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXNiUnsGc2hESZSluX8vpnqvijiOALArtYBp4yaSD3rGMN7S4va3qGtpgDsgHeUllQwucejZ775SdBoYiQpzDbZAn8UYXRyEA_wOLqp3YNE2hgbWO-j-ONoO5rv4BGNc_2aqdbUTv-ciI/s320/l.COSlxZVNziyujQJc.jpg" /></a></div>
<span class="Apple-style-span" style="color: blue; font-family: 'Trebuchet MS', sans-serif;">Josh has ROHHAD (Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation, and Autonomic Dysregulation.) He was diagnosed in the fall of 2005 when he was nine years old. ROHHAD is so rare, that at that time, there were only 25 known cases in the world. Josh was featured in a documentary about ROHHAD that aired on both the Discovery Channel and the Discovery Health Channel.</span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">If you had met Josh prior to 2005, you would have thought he was completely healthy. He was an active boy who loved playing sports and riding his bike. In March 2005, while recovering from a sore throat, Josh became very sleepy and couldn't keep his eyes open. He collapsed while getting out of the bath and spiked a fever of 103. His parents took Josh to an urgent care center, thinking he needed an antibiotic. Instead, the doctor said he was very sick and called the paramedics. Josh was rushed to the emergency room by ambulance, and just hours later went into respiratory arrest. He had to be revived five times before being intubated and placed on a ventilator. There was some swelling in Josh's brain, but his doctors couldn't find any cause for his respiratory failure.</span></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Just a few months later, Josh got another sore throat and was again having trouble staying awake. His parents rushed him to a doctor who told them to back to the ER, after seeing that Josh's oxygen saturation in his blood was too low (80%) While at the ER, Josh's O2 levels continued to drop (to 68%) and he was transferred to another hospital. By the following day, he was back on a ventilator. Josh was in the hospital for over a month before a doctor from Chicago was able to help his doctors figure out what was causing the problem. Josh was diagnosed with ROHHAD, although at the time it was called Late Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction. Doctors still do not know what causes it or how to cure it. Josh needed a tracheostomy to allow him to be ventilated long term, but no one knew how long he would need it. His doctors now believe Josh will need it the rest of his life. In the five years since his diagnosis, Josh has gone on a Make A Wish trip to Disney World, attended a conference on hypoventilation syndromes, and participated in an MRI study at UCLA.</span></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">In June 2009, Josh had diaphragmatic (breathing) pacemakers implanted in his chest to allow him to be free of the ventilator several hours a day. He survived both the swine flu and double pneumonia in January 2010. He is now almost 14, and getting ready to start Junior High this fall. He has a staff of nurses who take care of his at home and at school. Josh takes daily growth hormone injections and gets a testosterone shot once a month. He is also on medication to help with dehydration issues and steroids to help with his body temperature problems.</span></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Josh's mom, Vanessa, has a background in journalism and television. She spent nine years as a producer and assignment editor in a CBS affiliate newsroom in West Texas before Josh got sick. She has been blogging about Josh and ROHHAD for the past few years. Her next goal is to get certified as a respiratory therapist so she can use what she's learned with Josh about trachs, ventilators, and breathing treatments, etc. to help others and earn a better living. Vanessa is very active in raising awareness about ROHHAD in hopes that a cure will be found. You are welcome to check out Vanessa's Blog at: </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><a href="http://vwootenworld.blogspot.com/"><span class="Apple-style-span" style="color: blue;">http://vwootenworld.blogspot.com/</span></a></span><br />
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><br /></span>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com0tag:blogger.com,1999:blog-6750160449146981853.post-58309047683197299092010-07-31T07:24:00.021-04:002010-10-24T14:34:19.924-04:00Welcome to the Kids with Vents Blog!<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Kids with Vents started in June 2010, and we are growing fast! We have 60 members with 55 vent kids and young adults. Our kids come from all over the United States, and we also have several international members from the </span></span><span class="Apple-style-span" style="line-height: 16px;"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Philippines, Singapore, Canada, and the UK</span></span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">! </span></span><br />
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span><br />
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Our Blog features member profiles, group events, helpful information, and lots of great links! Our support group link is: </span></span><a href="http://health.groups.yahoo.com/group/Kids_with_Vents/"><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">http://health.groups.yahoo.com/group/Kids_with_Vents/</span></span></a><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Please contact us at kids_with_vents@yahoo.com for more information.</span></span><br />
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<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;">Hope to see you at Kids with Vents!</span></span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"> </span></span><br />
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif;"><span class="Apple-style-span" style="color: blue;"><br /></span></span>CCHSKIDhttp://www.blogger.com/profile/10673296651000526983noreply@blogger.com0