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	<title>wolfhirschhorn.org</title>
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	<link>http://www.wolfhirschhorn.org</link>
	<description>The Real Story about Wolf-Hirschhorn Syndrome</description>
	<lastBuildDate>Tue, 21 Feb 2012 18:56:40 +0000</lastBuildDate>
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		<title>Introducing Elsa</title>
		<link>http://www.wolfhirschhorn.org/2012/02/uncategorized/introducing-elsa/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/uncategorized/introducing-elsa/#comments</comments>
		<pubDate>Tue, 21 Feb 2012 18:46:40 +0000</pubDate>
		<dc:creator>Anitra</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5602</guid>
		<description><![CDATA[I want to start with a big thank you to the www.wolfhirschhorn.org community. You all are amazing, and my husband and I are so excited to meet you all. Our little Elsa was born Dec. 28, 2011, full term. We went into labor on my due date (Dec. 27). Labor was smooth, with no complications. [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/uncategorized/introducing-elsa/feed/</wfw:commentRss>
		<slash:comments>9</slash:comments>
		</item>
		<item>
		<title>Dylan is 3!!!</title>
		<link>http://www.wolfhirschhorn.org/2012/02/dylan/dylan-is-3/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/dylan/dylan-is-3/#comments</comments>
		<pubDate>Tue, 21 Feb 2012 05:14:32 +0000</pubDate>
		<dc:creator>Kristy Fisher</dc:creator>
				<category><![CDATA[Dylan]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5590</guid>
		<description><![CDATA[I can&#8217;t believe our little guy is 3! Three years ago today we welcomed Dylan into the world and our lives were never the same. Becoming Dylan&#8217;s mother has changed me in ways I never thought possible. I am most definitely a better person today because I was given the gift of becoming Dylan&#8217;s mom. [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/dylan/dylan-is-3/feed/</wfw:commentRss>
		<slash:comments>3</slash:comments>
		</item>
		<item>
		<title>Joint Statement of the Rivera Family and The Children’s Hospital of Philadelphia</title>
		<link>http://www.wolfhirschhorn.org/2012/02/amelia/joint-statement-of-the-rivera-family-and-the-children%e2%80%99s-hospital-of-philadelphia/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/amelia/joint-statement-of-the-rivera-family-and-the-children%e2%80%99s-hospital-of-philadelphia/#comments</comments>
		<pubDate>Wed, 15 Feb 2012 20:17:26 +0000</pubDate>
		<dc:creator>KevinO</dc:creator>
				<category><![CDATA[Amelia]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5568</guid>
		<description><![CDATA[FOR IMMEDIATE RELEASE Tuesday, February 15, 2012 Joint Statement of the Rivera Family and The Children’s Hospital of Philadelphia In response to significant public interest surrounding the Amelia Rivera story, the Rivera Family and The Children’s Hospital of Philadelphia have issued the following joint statement. Philadelphia, PA – February 15, 2012 – Over the course [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/amelia/joint-statement-of-the-rivera-family-and-the-children%e2%80%99s-hospital-of-philadelphia/feed/</wfw:commentRss>
		<slash:comments>4</slash:comments>
		</item>
		<item>
		<title>Rochelle</title>
		<link>http://www.wolfhirschhorn.org/2012/02/rochelle/rochelle/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/rochelle/rochelle/#comments</comments>
		<pubDate>Wed, 15 Feb 2012 03:08:51 +0000</pubDate>
		<dc:creator>shirley bidnick</dc:creator>
				<category><![CDATA[Rochelle]]></category>
		<category><![CDATA[introduction]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5506</guid>
		<description><![CDATA[I learned about this site when I read that the Rivera&#8217;s were told their daughter Amelia couldn&#8217;t have a kidney transplant. I was interested because my 32 year old daughter who has WHS also has kidney failure and may need a transplant. I care deeply about the rights of all individuals with developmental disabilities. As [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/rochelle/rochelle/feed/</wfw:commentRss>
		<slash:comments>6</slash:comments>
		</item>
		<item>
		<title>Livi</title>
		<link>http://www.wolfhirschhorn.org/2012/02/olivia-grace/livi/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/olivia-grace/livi/#comments</comments>
		<pubDate>Sun, 12 Feb 2012 21:05:49 +0000</pubDate>
		<dc:creator>oliviagrace</dc:creator>
				<category><![CDATA[Olivia Grace]]></category>
		<category><![CDATA[eating]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5523</guid>
		<description><![CDATA[Livi is 8 months old and a few first moments have happened in the past three months. Her first coldwhich lasted a little over seven weeks, with her not eating much and throwing everything that went in up. She lost 6 ounces in those seven weeks and I was a wreck. She wanted to eat but she started to associate it with throwing up. At this point her zantac stopped working and we moved on to prilosec which she threw up no matter how it was given to her. We then tried prevacid and have been doing great on that. We did not have to go to the hospital (knock on wood). We also gained back the 6 ounces and then some.  She is also eating more now.  ]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/olivia-grace/livi/feed/</wfw:commentRss>
		<slash:comments>4</slash:comments>
		</item>
		<item>
		<title>Kaylee is 2!</title>
		<link>http://www.wolfhirschhorn.org/2012/02/kaylee/kaylee-is-2/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/kaylee/kaylee-is-2/#comments</comments>
		<pubDate>Sun, 12 Feb 2012 18:55:14 +0000</pubDate>
		<dc:creator>Laurie</dc:creator>
				<category><![CDATA[Kaylee]]></category>
		<category><![CDATA[Birthday]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5526</guid>
		<description><![CDATA[On January 16th, Kailyn (aka: Kaylee) turned 2 years old. I will confess that it was a bittersweet day for me. While on the one hand, I could tell that she had grown significantly since last year~ developmentally, there was this feeling that she was still pretty far behind...even by Wolf Hirschhorn Syndrome standards. ]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/kaylee/kaylee-is-2/feed/</wfw:commentRss>
		<slash:comments>6</slash:comments>
		</item>
		<item>
		<title>introducing Teejay</title>
		<link>http://www.wolfhirschhorn.org/2012/02/teejay/introducing-teejay/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/teejay/introducing-teejay/#comments</comments>
		<pubDate>Thu, 09 Feb 2012 09:49:59 +0000</pubDate>
		<dc:creator>teejay</dc:creator>
				<category><![CDATA[Teejay]]></category>
		<category><![CDATA[introduction]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5493</guid>
		<description><![CDATA[We just wanted to say hi to everyone and introduce our special little boy Teejay. Teejay was born at the end of february 2011 about 5 weeks earlier than planned and weighing in at just over 4 pounds. He spent the first 3 weeks in hospital mainly due to the fact that he would not [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/teejay/introducing-teejay/feed/</wfw:commentRss>
		<slash:comments>4</slash:comments>
		</item>
		<item>
		<title>Sabrina can sit!</title>
		<link>http://www.wolfhirschhorn.org/2012/02/sabrina/sabrina-can-sit/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/sabrina/sabrina-can-sit/#comments</comments>
		<pubDate>Thu, 09 Feb 2012 06:14:18 +0000</pubDate>
		<dc:creator>Leonie</dc:creator>
				<category><![CDATA[Sabrina]]></category>
		<category><![CDATA[Sitting Position]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5489</guid>
		<description><![CDATA[Well, sort of ;) She can't sit up by herself, but if we put her in sitting position she can steady herself and stay there for 5 minutes or more! Very exciting.

Sabrina is happy and healthy and has also been seizure free (touching wood) for the past 8 months. She has had her ears checked and it turns out she only has a mild hearing loss in one ear which is not a cause for any concern.  ]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/sabrina/sabrina-can-sit/feed/</wfw:commentRss>
		<slash:comments>5</slash:comments>
		</item>
		<item>
		<title>How-To: Changing a Mic-Key Button</title>
		<link>http://www.wolfhirschhorn.org/2012/02/kendall/how-to-changing-a-mic-key-button/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/kendall/how-to-changing-a-mic-key-button/#comments</comments>
		<pubDate>Thu, 09 Feb 2012 03:23:46 +0000</pubDate>
		<dc:creator>KevinO</dc:creator>
				<category><![CDATA[General Information]]></category>
		<category><![CDATA[Kendall]]></category>
		<category><![CDATA[Feeding Tube]]></category>
		<category><![CDATA[G-Tube]]></category>
		<category><![CDATA[How-to]]></category>
		<category><![CDATA[Mic-Key Button]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5476</guid>
		<description><![CDATA[One of the most beneficial things we can do as a group is help each other on tips and tricks around being a parent of a wolf-hirschhorn child. For us, one of the scariest things that we faced with Kendall is wondering how to effectively care for her feeding tube and Mic-key button. So, we [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/kendall/how-to-changing-a-mic-key-button/feed/</wfw:commentRss>
		<slash:comments>3</slash:comments>
		</item>
		<item>
		<title>Look what Arin can do&#8230;..</title>
		<link>http://www.wolfhirschhorn.org/2012/02/arin-rae/look-what-arin-can-do/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/arin-rae/look-what-arin-can-do/#comments</comments>
		<pubDate>Tue, 07 Feb 2012 22:09:34 +0000</pubDate>
		<dc:creator>Brianna</dc:creator>
				<category><![CDATA[Arin Rae]]></category>
		<category><![CDATA[development]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5466</guid>
		<description><![CDATA[Look what Arin has started to do.... she has started to lift her head up while on our chest and while using the Tumzee by the makers of the wingbo but only costs a quarter of what the wingbo does. She looks so cute when she does it.]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/arin-rae/look-what-arin-can-do/feed/</wfw:commentRss>
		<slash:comments>6</slash:comments>
		</item>
		<item>
		<title>Seizure Alert Dog</title>
		<link>http://www.wolfhirschhorn.org/2012/02/alexander/5448/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/alexander/5448/#comments</comments>
		<pubDate>Tue, 07 Feb 2012 03:15:54 +0000</pubDate>
		<dc:creator>Kristen</dc:creator>
				<category><![CDATA[Alexander]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5448</guid>
		<description><![CDATA[***A few disclaimers:  This post was originally posted on our personal blog: http://www.alittlesomethingforme.com &#8211; All of the links (with the exception of the 4Paws for Ability) go back to previous posts in our personal blog.*** &#160; **We are excited to travel this road with service dogs.  The literature on seizure dogs is still new, but [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/alexander/5448/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>Taylor is getting a DynaVox!!</title>
		<link>http://www.wolfhirschhorn.org/2012/02/taylor/taylor-is-getting-a-dynavox/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/taylor/taylor-is-getting-a-dynavox/#comments</comments>
		<pubDate>Mon, 06 Feb 2012 19:24:19 +0000</pubDate>
		<dc:creator>taylorbug</dc:creator>
				<category><![CDATA[Taylor]]></category>
		<category><![CDATA[dynavox]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5410</guid>
		<description><![CDATA[I am so exicted to share that Taylor is getting a DynaVox! We had a meeting today at the speech clinic. Taylor got to have a hands on session with the DyanVox and I can just see this bringing so much to Taylor&#8217;s life. It truely is amazing to see her learning and enjoying something [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/taylor/taylor-is-getting-a-dynavox/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Perfectly Perfect</title>
		<link>http://www.wolfhirschhorn.org/2012/02/tyler-james/perfectly-perfect/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/tyler-james/perfectly-perfect/#comments</comments>
		<pubDate>Sun, 05 Feb 2012 21:37:09 +0000</pubDate>
		<dc:creator>Autumn</dc:creator>
				<category><![CDATA[Tyler James]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5441</guid>
		<description><![CDATA[I wrote this post on my blog but wanted to share it on here also.  I hope everyone is doing well and eating lots of good food on this Superbowl Sunday&#8230;. Dysmorphic Facial Features&#8230;.. I&#8217;m sure you&#8217;re wondering what I&#8217;m talking about.  Those words are the reason the NICU doctor gave us for wanting to [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/tyler-james/perfectly-perfect/feed/</wfw:commentRss>
		<slash:comments>3</slash:comments>
		</item>
		<item>
		<title>Thank you!</title>
		<link>http://www.wolfhirschhorn.org/2012/02/amelia/thank-you/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/amelia/thank-you/#comments</comments>
		<pubDate>Sat, 04 Feb 2012 01:15:12 +0000</pubDate>
		<dc:creator>crivera75</dc:creator>
				<category><![CDATA[Amelia]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5406</guid>
		<description><![CDATA[Brief Update&#8230; Almost three weeks after our initial visit, we returned to CHOP to hear the hour long presentation about kidney transplants.The presenter discussed the risks for Amelia and the donor, and although they would be scary to any parent, there were no risks that raised any red flags that Amelia should not have the [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/amelia/thank-you/feed/</wfw:commentRss>
		<slash:comments>17</slash:comments>
		</item>
		<item>
		<title>Marley</title>
		<link>http://www.wolfhirschhorn.org/2012/02/marley/marley/</link>
		<comments>http://www.wolfhirschhorn.org/2012/02/marley/marley/#comments</comments>
		<pubDate>Thu, 02 Feb 2012 01:23:06 +0000</pubDate>
		<dc:creator>MarMar</dc:creator>
				<category><![CDATA[Marley]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5416</guid>
		<description><![CDATA[Hello Everyone, This is Marley, she is 10 months old and 10lbs 4oz she is the most delightful, easy going little girl, we are from Nova Scotia, Canada. Marley made her appearance into the world on April 18, 2011, weighing 5 lbs 1oz. She arrived with a planned induction due to knowing she was on [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/02/marley/marley/feed/</wfw:commentRss>
		<slash:comments>6</slash:comments>
		</item>
		<item>
		<title>A Life Changing Event&#8230;for a greater population</title>
		<link>http://www.wolfhirschhorn.org/2012/01/amelia/a-life-changing-event-for-a-greater-population/</link>
		<comments>http://www.wolfhirschhorn.org/2012/01/amelia/a-life-changing-event-for-a-greater-population/#comments</comments>
		<pubDate>Mon, 30 Jan 2012 08:49:46 +0000</pubDate>
		<dc:creator>KevinO</dc:creator>
				<category><![CDATA[Amelia]]></category>
		<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[General Information]]></category>
		<category><![CDATA[Social Media]]></category>
		<category><![CDATA[Discrimination against the disabled]]></category>
		<category><![CDATA[Kidney Transplant]]></category>
		<category><![CDATA[kidneys]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5397</guid>
		<description><![CDATA[As a group, we need to stand up and applaud each other, thank our families, and be proud of our accomplishments. A bubble was building and it finally popped. We all know the story now and if you don&#8217;t, just check out this link: Brick Walls. On Friday, January 13, 2012, a historical event occurred [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/01/amelia/a-life-changing-event-for-a-greater-population/feed/</wfw:commentRss>
		<slash:comments>7</slash:comments>
		</item>
		<item>
		<title>Evelina</title>
		<link>http://www.wolfhirschhorn.org/2012/01/evelina/evelina/</link>
		<comments>http://www.wolfhirschhorn.org/2012/01/evelina/evelina/#comments</comments>
		<pubDate>Fri, 27 Jan 2012 23:41:41 +0000</pubDate>
		<dc:creator>Antonella (Evelina's Mom)</dc:creator>
				<category><![CDATA[Evelina]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5362</guid>
		<description><![CDATA[HI! My name Antonella, my daughter Evelina was born on August 10th 2011 and I&#8217;m new to the website and want to share my story. I&#8217;ll give the short form of it to start.  Evelina has WHS with a deletion at the 15.3 4p chromosome.   I was 35weeks pregnant when the doctors decided to deliver [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/01/evelina/evelina/feed/</wfw:commentRss>
		<slash:comments>10</slash:comments>
		</item>
		<item>
		<title>Brick Walls</title>
		<link>http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/</link>
		<comments>http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/#comments</comments>
		<pubDate>Thu, 12 Jan 2012 19:45:41 +0000</pubDate>
		<dc:creator>crivera75</dc:creator>
				<category><![CDATA[Amelia]]></category>
		<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[Kidney Transplant]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5298</guid>
		<description><![CDATA[I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/feed/</wfw:commentRss>
		<slash:comments>867</slash:comments>
		</item>
		<item>
		<title>Kidney Chronicles: Part Two</title>
		<link>http://www.wolfhirschhorn.org/2012/01/amelia/kidney-chronicles-part-two/</link>
		<comments>http://www.wolfhirschhorn.org/2012/01/amelia/kidney-chronicles-part-two/#comments</comments>
		<pubDate>Tue, 10 Jan 2012 17:49:30 +0000</pubDate>
		<dc:creator>crivera75</dc:creator>
				<category><![CDATA[Amelia]]></category>
		<category><![CDATA[Kidney Transplant]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5286</guid>
		<description><![CDATA[Just the facts for today: We saw nephrology and Mia is dong well. We asked the important question, &#8220;How long do we have until she needs a transplant?&#8221; Response: About six months to a year. We were happy with this news! We then met with head of transplant team. It did not go as well. [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/01/amelia/kidney-chronicles-part-two/feed/</wfw:commentRss>
		<slash:comments>28</slash:comments>
		</item>
		<item>
		<title>Kidney Chronicles: Part One</title>
		<link>http://www.wolfhirschhorn.org/2012/01/amelia/kidney-chronicles-part-one/</link>
		<comments>http://www.wolfhirschhorn.org/2012/01/amelia/kidney-chronicles-part-one/#comments</comments>
		<pubDate>Fri, 06 Jan 2012 15:25:32 +0000</pubDate>
		<dc:creator>crivera75</dc:creator>
				<category><![CDATA[Amelia]]></category>
		<category><![CDATA[Kidney Transplant]]></category>

		<guid isPermaLink="false">http://www.wolfhirschhorn.org/?p=5277</guid>
		<description><![CDATA[     I have asked on the list serve if any one could help with any information about kidney diseases and transplants, and although many people offered support, no one responded about actually going through a transplant. So I thought I would blog about our experiences to help others. And as usual, I am being selfish [...]]]></description>
		<wfw:commentRss>http://www.wolfhirschhorn.org/2012/01/amelia/kidney-chronicles-part-one/feed/</wfw:commentRss>
		<slash:comments>8</slash:comments>
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