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	<title>wolfhirschhorn.org</title>
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	<link>http://wolfhirschhorn.org</link>
	<description>The Real Story about Wolf-Hirschhorn Syndrome</description>
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		<title>To iPad or not to iPad? That is the question&#8230;</title>
		<link>http://wolfhirschhorn.org/2012/05/mia-rose/to-ipad-or-not-to-ipad-that-is-the-question/</link>
		<comments>http://wolfhirschhorn.org/2012/05/mia-rose/to-ipad-or-not-to-ipad-that-is-the-question/#comments</comments>
		<pubDate>Wed, 16 May 2012 14:12:44 +0000</pubDate>
		<dc:creator>Ross</dc:creator>
				<category><![CDATA[Mia Rose]]></category>
		<category><![CDATA[computer]]></category>
		<category><![CDATA[development]]></category>
		<category><![CDATA[ipad]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6234</guid>
		<description><![CDATA[I&#8217;ve been toying with the idea of buying a tablet PC for a while now, half selling it to myself (and Vicki) on the strength that Mia would benefit, while honestly thinking she was probably not quite ready. Over the past weeks, however, I have noticed Mia showing a newfound fascination in my phone &#8211; [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/05/mia-rose/to-ipad-or-not-to-ipad-that-is-the-question/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
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		<item>
		<title>Reese had eye surgery</title>
		<link>http://wolfhirschhorn.org/2012/05/uncategorized/reese-had-eye-surgery/</link>
		<comments>http://wolfhirschhorn.org/2012/05/uncategorized/reese-had-eye-surgery/#comments</comments>
		<pubDate>Thu, 10 May 2012 02:25:36 +0000</pubDate>
		<dc:creator>tanners19</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6222</guid>
		<description><![CDATA[Reese had her eye surgery today if you&#8217;d like to read more about it you can visit our blog: http://draperfamily4.wordpress.com/2012/05/10/eye-surgery-3/]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/05/uncategorized/reese-had-eye-surgery/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Bella Isabellalala</title>
		<link>http://wolfhirschhorn.org/2012/05/uncategorized/bella-isabellalala/</link>
		<comments>http://wolfhirschhorn.org/2012/05/uncategorized/bella-isabellalala/#comments</comments>
		<pubDate>Wed, 09 May 2012 12:03:27 +0000</pubDate>
		<dc:creator>M</dc:creator>
				<category><![CDATA[Isabella N]]></category>
		<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6211</guid>
		<description><![CDATA[Hello!  Here&#8217;s an update on my lil princess&#8230; Motor skills&#8230; For the past month she&#8217;s been doing things that make me so proud of her.  She started rolling from back to belly and has started standing!!  I support her by holding her hips and it just awes me and occasionally brings me to tears to [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/05/uncategorized/bella-isabellalala/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
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		</item>
		<item>
		<title>Update on Reese</title>
		<link>http://wolfhirschhorn.org/2012/05/uncategorized/update-on-reese/</link>
		<comments>http://wolfhirschhorn.org/2012/05/uncategorized/update-on-reese/#comments</comments>
		<pubDate>Mon, 07 May 2012 20:40:27 +0000</pubDate>
		<dc:creator>tanners19</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6185</guid>
		<description><![CDATA[We just wanted to let everyone know that we got the test results back from Reese&#8217;s genetics test and she does not have Wolf Hirschhorn&#8230; She has an even more rare deletion on her 5th chromesome 5Q22. I am a little sad its not WHS because I have found so many support groups&#8230; there are [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/05/uncategorized/update-on-reese/feed/</wfw:commentRss>
		<slash:comments>5</slash:comments>
		</item>
		<item>
		<title>Nathaniel</title>
		<link>http://wolfhirschhorn.org/2012/05/nathaniel/nathaniel/</link>
		<comments>http://wolfhirschhorn.org/2012/05/nathaniel/nathaniel/#comments</comments>
		<pubDate>Mon, 07 May 2012 20:08:00 +0000</pubDate>
		<dc:creator>Letty</dc:creator>
				<category><![CDATA[Nathaniel]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6183</guid>
		<description><![CDATA[Well things had been going great, still are, but Nathaniel had a seizure last Thursday. It lasted about nine minutes and afterwards he was shivering and I&#8217;m assuming in pain from the seizing because he was moaning for about another 30 minutes. It took a while, but he slept the remainder of the night. He [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/05/nathaniel/nathaniel/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Yoga at the beach &#8211; Dylan style</title>
		<link>http://wolfhirschhorn.org/2012/05/dylan/yoga-at-the-beach-dylan-style/</link>
		<comments>http://wolfhirschhorn.org/2012/05/dylan/yoga-at-the-beach-dylan-style/#comments</comments>
		<pubDate>Thu, 03 May 2012 02:44:08 +0000</pubDate>
		<dc:creator>Kristy Fisher</dc:creator>
				<category><![CDATA[Dylan]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6171</guid>
		<description><![CDATA[On Sunday my sister and I took the kids down to the beach in Malibu.  It was overcast, but warm and fun.  The kids had a blast and Dylan had quite the little yoga routine going on, we were cracking up watching him.  It went something like this&#8230;   First, you start out on the [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/05/dylan/yoga-at-the-beach-dylan-style/feed/</wfw:commentRss>
		<slash:comments>3</slash:comments>
		</item>
		<item>
		<title>The good Ole&#8217; days</title>
		<link>http://wolfhirschhorn.org/2012/05/amariah/the-good-ole-days/</link>
		<comments>http://wolfhirschhorn.org/2012/05/amariah/the-good-ole-days/#comments</comments>
		<pubDate>Wed, 02 May 2012 17:15:33 +0000</pubDate>
		<dc:creator>MeandMine_A</dc:creator>
				<category><![CDATA[Amariah]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6161</guid>
		<description><![CDATA[There are so many parents here with small children with WHS. I just found this picture in an old drawer and I remember this like it was yesterday. Then again it was so long ago I can barely remember those days. Amariah is 12 yrs old now and I wish i could just hold her [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/05/amariah/the-good-ole-days/feed/</wfw:commentRss>
		<slash:comments>6</slash:comments>
		</item>
		<item>
		<title>Nathaniel&#8217;s visit to the Ophthalmologist and then some!</title>
		<link>http://wolfhirschhorn.org/2012/04/nathaniel/nathaniels-visit-to-the-ophthalmologist-and-then-some/</link>
		<comments>http://wolfhirschhorn.org/2012/04/nathaniel/nathaniels-visit-to-the-ophthalmologist-and-then-some/#comments</comments>
		<pubDate>Tue, 01 May 2012 01:18:46 +0000</pubDate>
		<dc:creator>Letty</dc:creator>
				<category><![CDATA[Nathaniel]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6123</guid>
		<description><![CDATA[Last week, Nathaniel had an appointment with his ophthalmologist and as expected, we scheduled surgery to correct his strabismus on May 10th. I&#8217;m not too concerned with the procedure. I worked for an ophthalmologist for over 10 years and kinda-assisted this specific doctor in an in-office-procedure. He is quick and awesome. I know the results [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/nathaniel/nathaniels-visit-to-the-ophthalmologist-and-then-some/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>Kendall and Elsa: Past and Future</title>
		<link>http://wolfhirschhorn.org/2012/04/kendall/kendall-and-elsa-past-and-future/</link>
		<comments>http://wolfhirschhorn.org/2012/04/kendall/kendall-and-elsa-past-and-future/#comments</comments>
		<pubDate>Mon, 30 Apr 2012 00:15:00 +0000</pubDate>
		<dc:creator>KevinO</dc:creator>
				<category><![CDATA[Elsa]]></category>
		<category><![CDATA[Kendall]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6145</guid>
		<description><![CDATA[In early April, the Schulte&#8217;s and O&#8217;Brien&#8217;s arranged a meet up to visit and get to know each other; but more importantly, get to meet Kendall and Elsa. We decided to collectively write a post about our feelings of the past and future. Here is our story&#8230; Looking forward Meeting Kendall, for us, was like [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/kendall/kendall-and-elsa-past-and-future/feed/</wfw:commentRss>
		<slash:comments>4</slash:comments>
		</item>
		<item>
		<title>Elsa: 4 Months</title>
		<link>http://wolfhirschhorn.org/2012/04/elsa/elsa-4-months/</link>
		<comments>http://wolfhirschhorn.org/2012/04/elsa/elsa-4-months/#comments</comments>
		<pubDate>Sun, 29 Apr 2012 17:20:06 +0000</pubDate>
		<dc:creator>Anitra</dc:creator>
				<category><![CDATA[Elsa]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6135</guid>
		<description><![CDATA[Our little Elsa is now 4 months old! Hard to believe, as time has flown so very quickly. We love our little angel so much. She is doing very well, and the WHS community continues to be such an amazing support to us. Thank you all for your messages! Here are some updates, across a [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/elsa/elsa-4-months/feed/</wfw:commentRss>
		<slash:comments>5</slash:comments>
<enclosure url="http://wolfhirschhorn.org/wp-content/uploads/2012/04/IMG_0085-condensed.mov" length="5339488" type="video/quicktime" />
		</item>
		<item>
		<title>Reese Naomi&#8217;s Genetics Apt</title>
		<link>http://wolfhirschhorn.org/2012/04/uncategorized/reese-naomis-genetics-apt/</link>
		<comments>http://wolfhirschhorn.org/2012/04/uncategorized/reese-naomis-genetics-apt/#comments</comments>
		<pubDate>Wed, 25 Apr 2012 19:49:22 +0000</pubDate>
		<dc:creator>tanners19</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6129</guid>
		<description><![CDATA[Just got done with genetics, The Dr. isn&#8217;t convinced Reese has WHS because of some other features she has, so they did a blood test and we will find out more in a couple weeks. It may be something very similar though. Possibly 18P- I will be sure to keep you posted! &#160; Reese and [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/uncategorized/reese-naomis-genetics-apt/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>Talia update</title>
		<link>http://wolfhirschhorn.org/2012/04/talia/talia-update/</link>
		<comments>http://wolfhirschhorn.org/2012/04/talia/talia-update/#comments</comments>
		<pubDate>Tue, 24 Apr 2012 13:59:13 +0000</pubDate>
		<dc:creator>samm1</dc:creator>
				<category><![CDATA[Talia]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6116</guid>
		<description><![CDATA[Talia is now 4yrs old and has come on leaps and bounds,she has started to toddle around although not for long periods and is still unaware of her surroundings and danger&#8230;. She eats really well but doesn&#8217;t feed herself&#8230;.she loves music and sings all day long and picks tunes up really quickly&#8230;..she is growing into [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/talia/talia-update/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>Introducing Reese Naomi</title>
		<link>http://wolfhirschhorn.org/2012/04/reese/introducing-reese-naomi/</link>
		<comments>http://wolfhirschhorn.org/2012/04/reese/introducing-reese-naomi/#comments</comments>
		<pubDate>Tue, 24 Apr 2012 03:53:24 +0000</pubDate>
		<dc:creator>tanners19</dc:creator>
				<category><![CDATA[Reese]]></category>
		<category><![CDATA[introduction]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6108</guid>
		<description><![CDATA[&#160; Reese is 17 months old and thriving! Reese has had her share of hospitalizations, MRI&#8217;s, Neurology and Eye appointments. Reese has been in a early intervention program since she was 5 months old however we did not know exactly what she had until about 6 months ago. She see a genetics Dr this week, [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/reese/introducing-reese-naomi/feed/</wfw:commentRss>
		<slash:comments>3</slash:comments>
		</item>
		<item>
		<title>Update on Addilynn</title>
		<link>http://wolfhirschhorn.org/2012/04/addilynn/update-on-addilynn/</link>
		<comments>http://wolfhirschhorn.org/2012/04/addilynn/update-on-addilynn/#comments</comments>
		<pubDate>Mon, 23 Apr 2012 19:03:08 +0000</pubDate>
		<dc:creator>Kourtney Owen</dc:creator>
				<category><![CDATA[Addilynn]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6106</guid>
		<description><![CDATA[Miss Addilynn is 9 months old now,and is weighing in just over 12 pounds! We&#8217;ve had our fights with rsv and pneumonia throughout the winter but we are strong and steady now! She will be having her surgery to fix her cleft lip the beginning of may and will be celebrating her 1st birthday this [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/addilynn/update-on-addilynn/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Nathaniel&#8217;s update&#8230;</title>
		<link>http://wolfhirschhorn.org/2012/04/nathaniel/nathaniels-update/</link>
		<comments>http://wolfhirschhorn.org/2012/04/nathaniel/nathaniels-update/#comments</comments>
		<pubDate>Sat, 21 Apr 2012 00:26:11 +0000</pubDate>
		<dc:creator>Letty</dc:creator>
				<category><![CDATA[Nathaniel]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6100</guid>
		<description><![CDATA[I haven&#8217;t had to vent too much because nothing new has come up&#8230;.Thank God! I do however, get to brag! Nathaniel is doing so much more. Before, I was still having to swaddle him /tuck his right arm around my back and hug him tightly while he fed with the bottle and now he wants [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/nathaniel/nathaniels-update/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>Splash Splash!</title>
		<link>http://wolfhirschhorn.org/2012/04/mia-rose/splash-splash/</link>
		<comments>http://wolfhirschhorn.org/2012/04/mia-rose/splash-splash/#comments</comments>
		<pubDate>Thu, 19 Apr 2012 14:49:25 +0000</pubDate>
		<dc:creator>Ross</dc:creator>
				<category><![CDATA[Mia Rose]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=6071</guid>
		<description><![CDATA[Mia, albeit as a fairly passive participant until now, has always seemed to enjoy her bath time. Something she discovered during our recent trip, however, was the unbridled joy of splashing. Moreover, she seems to take great pleasure in responding to her deranged parents&#8217; incessant demands of &#8220;ready&#8230; steady&#8230; splash, splash, splash!&#8221; This short clip was taken during [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/mia-rose/splash-splash/feed/</wfw:commentRss>
		<slash:comments>5</slash:comments>
<enclosure url="http://wolfhirschhorn.org/wp-content/uploads/2012/04/IMG_1467.mov" length="3619111" type="video/quicktime" />
		</item>
		<item>
		<title>Mia goes Stateside</title>
		<link>http://wolfhirschhorn.org/2012/04/mia-rose/mia-goes-stateside/</link>
		<comments>http://wolfhirschhorn.org/2012/04/mia-rose/mia-goes-stateside/#comments</comments>
		<pubDate>Sun, 15 Apr 2012 00:16:28 +0000</pubDate>
		<dc:creator>Ross</dc:creator>
				<category><![CDATA[Mia Rose]]></category>
		<category><![CDATA[travel]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=5818</guid>
		<description><![CDATA[We just got back from a fantastic family vacation in the U.S. where we spent a glorious week in sunny Florida and had a few magical days in New York on the return leg. Given Mia&#8217;s respiratory virus and multiple seizures earlier in the year we had more than a few reservations when it came [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/mia-rose/mia-goes-stateside/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Thank You Christina Re: Nathaniel :)</title>
		<link>http://wolfhirschhorn.org/2012/04/nathaniel/thank-you-christina-re-nathaniel/</link>
		<comments>http://wolfhirschhorn.org/2012/04/nathaniel/thank-you-christina-re-nathaniel/#comments</comments>
		<pubDate>Sat, 14 Apr 2012 01:40:23 +0000</pubDate>
		<dc:creator>Letty</dc:creator>
				<category><![CDATA[Nathaniel]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=5814</guid>
		<description><![CDATA[Friends are very important, so I just want to THANK Christina for giving me this website. You have helped me in more ways than you could ever imagine. Please read all of Nathaniel&#8217;s stories.]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/nathaniel/thank-you-christina-re-nathaniel/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Face-to-face meeting with the Geneticist Re: Nathaniel.</title>
		<link>http://wolfhirschhorn.org/2012/04/nathaniel/face-to-face-meeting-with-the-geneticist-re-nathaniel/</link>
		<comments>http://wolfhirschhorn.org/2012/04/nathaniel/face-to-face-meeting-with-the-geneticist-re-nathaniel/#comments</comments>
		<pubDate>Fri, 13 Apr 2012 21:04:26 +0000</pubDate>
		<dc:creator>Letty</dc:creator>
				<category><![CDATA[Nathaniel]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=5809</guid>
		<description><![CDATA[Yesterday we had a meeting with the geneticist, our actual face-to-face meeting. Got better news than expected. Of course, it&#8217;s still too soon to predict his future health. But the fact that my husband was there to discuss Nathaniel&#8217;s diagnosis and prognosis was a big step. He finally understood why I was so glued to [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/nathaniel/face-to-face-meeting-with-the-geneticist-re-nathaniel/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Nathaniel&#8217;s cardio. visit</title>
		<link>http://wolfhirschhorn.org/2012/04/nathaniel/nathaniels-cardio-visit/</link>
		<comments>http://wolfhirschhorn.org/2012/04/nathaniel/nathaniels-cardio-visit/#comments</comments>
		<pubDate>Thu, 12 Apr 2012 02:26:09 +0000</pubDate>
		<dc:creator>Letty</dc:creator>
				<category><![CDATA[Nathaniel]]></category>

		<guid isPermaLink="false">http://wolfhirschhorn.org/?p=5806</guid>
		<description><![CDATA[Good news!!! Today Nathaniel had a check up with the cardiologist. It appears his heart is functioning even better than last time. He went from every 2 months-to every 6 months, and now he&#8217;s not due to follow up for another year. If at his next visit, he&#8217;s doing even better, he will be released! [...]]]></description>
		<wfw:commentRss>http://wolfhirschhorn.org/2012/04/nathaniel/nathaniels-cardio-visit/feed/</wfw:commentRss>
		<slash:comments>4</slash:comments>
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