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	<title>Our Adventures with Baylee</title>
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	<link>http://cdls.wordpress.com</link>
	<description>Cornelia de Lange Syndrome and Debt Free Living</description>
	<pubDate>Wed, 23 Jul 2008 18:23:04 +0000</pubDate>
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	<language>en</language>
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		<title>Go By Bike Challenge</title>
		<link>http://cdls.wordpress.com/2008/07/23/go-by-bike-challenge/</link>
		<comments>http://cdls.wordpress.com/2008/07/23/go-by-bike-challenge/#comments</comments>
		<pubDate>Wed, 23 Jul 2008 18:23:04 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
		<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://cdls.wordpress.com/2008/07/23/go-by-bike-challenge/</guid>
		<description><![CDATA[I&#8217;m biking to work!
       ]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><div>I&#8217;m biking to work!</div>
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		<title>Wordless Wednesday</title>
		<link>http://cdls.wordpress.com/2008/07/23/wordless-wednesday/</link>
		<comments>http://cdls.wordpress.com/2008/07/23/wordless-wednesday/#comments</comments>
		<pubDate>Wed, 23 Jul 2008 17:18:24 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
		<category><![CDATA[Wordless Wednesday]]></category>

		<category><![CDATA[bike-a-saurus]]></category>

		<category><![CDATA[cdls]]></category>

		<category><![CDATA[Cornelia de Lange Syndrome]]></category>

		<guid isPermaLink="false">http://cdls.wordpress.com/?p=119</guid>
		<description><![CDATA[

       ]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><div class="wp-caption aligncenter" style="width: 510px"><img src="http://farm4.static.flickr.com/3089/2685731271_3e8e2ef04a.jpg" alt="Bike-a-saurus" width="500" height="375" /><p class="wp-caption-text">Bike-a-saurus</p></div>
<p><a href="http://www.mylivesignature.com" target="_blank"><img src="http://signatures.mylivesignature.com/54486/226/E2DFD1A5A501173065B7DC438A3789DE.png"></a></p>
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			<media:title type="html">Bike-a-saurus</media:title>
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		<title>We are officially Flickr addicts&#8230;</title>
		<link>http://cdls.wordpress.com/2008/07/19/we-are-officially-flickr-addicts/</link>
		<comments>http://cdls.wordpress.com/2008/07/19/we-are-officially-flickr-addicts/#comments</comments>
		<pubDate>Sat, 19 Jul 2008 17:49:05 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
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		<description><![CDATA[
I Dont Know What To Say?
Originally uploaded by keith45guy
I love photography and while I stink at it, I thoroughly enjoy looking at photos taken by talented people.  I could sit nearly all day and look at the wonderful photos on Flickr.  What is even more fun, though, is finding real gems that give [...]]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><div style="float:right;margin-left:10px;margin-bottom:10px;"><a title="photo sharing" href="http://www.flickr.com/photos/keithguy/2629944764/"><img style="border:solid 2px #000000;" src="http://farm4.static.flickr.com/3088/2629944764_d9080a79d0_m.jpg" alt="" /></a></p>
<p><a href="http://www.flickr.com/photos/keithguy/2629944764/">I Dont Know What To Say?</a></p>
<p>Originally uploaded by <a href="http://www.flickr.com/people/keithguy/">keith45guy</a></div>
<p>I love photography and while I stink at it, I thoroughly enjoy looking at photos taken by talented people.  I could sit nearly all day and look at the wonderful photos on Flickr.  What is even more fun, though, is finding real gems that give you a great laugh for the day (the comments are equally funny).</p>
<p>What&#8217;s even more humorous about this one is that it&#8217;s from DH&#8217;s hometown&#8211;Council Bluffs, IA.  I had to give him a little ribbing about this one.  Now I&#8217;m sure he&#8217;ll be looking for something equally as funny from my hometown of Waterloo, but he doesn&#8217;t know how to blog, so at least publicly I&#8217;m safe from having my humble origins be the butt of the joke.</p>
<p>We may be rednecks, but all of our vehicles have factory installed ACs.</p>
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		<title>Great summer recipe &#8211;Strawberry pie</title>
		<link>http://cdls.wordpress.com/2008/07/17/great-summer-recipe-strawberry-pie/</link>
		<comments>http://cdls.wordpress.com/2008/07/17/great-summer-recipe-strawberry-pie/#comments</comments>
		<pubDate>Thu, 17 Jul 2008 17:58:47 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
		<category><![CDATA[Food/Recipes]]></category>

		<category><![CDATA[strawberry pie gelatin]]></category>

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		<description><![CDATA[



Strawberry pie

Originally uploaded by baysmom3


This is one of those recipes that is especially nice, because it&#8217;s simple enough that you can keep it in your head.  No need to write it down and then dig to find it next time you have a craving.  It&#8217;s also great in the summer because it&#8217;s no [...]]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><div style="float:right;margin-left:10px;margin-bottom:10px;">
<a href="http://www.flickr.com/photos/baysmom3/2677031219/" title="photo sharing"><img src="http://farm4.static.flickr.com/3150/2677031219_fbab41e2b1_m.jpg" alt="" style="border:solid 2px #000000;" /></a><br />
<br />
<span style="font-size:0.9em;margin-top:0;"><br />
<a href="http://www.flickr.com/photos/baysmom3/2677031219/">Strawberry pie</a><br />
<br />
Originally uploaded by <a href="http://www.flickr.com/people/baysmom3/">baysmom3</a><br />
</span>
</div>
<p>This is one of those recipes that is especially nice, because it&#8217;s simple enough that you can keep it in your head.  No need to write it down and then dig to find it next time you have a craving.  It&#8217;s also great in the summer because it&#8217;s no bake&#8211;no need to fire up that oven when it&#8217;s 99 degrees outside.</p>
<p>Strawberry Pie</p>
<p>1 small pkg cook &#8216;n serve sugar-free vanilla pudding mix<br />
1 small pkg sugar free strawberry gelatin<br />
1 pie crust&#8211;I use a Keebler graham crust (reg or low-fat), but you could use a regular pastry pie crust, but bake pastry crust before filling<br />
Sliced strawberries to fill the crust</p>
<p>Add two cups COLD water to a small saucepan and add pudding mix. Cook and stir, boil for about 2 minutes. Remove from heat and whisk in strawberry gelatin. Let cool. While this is cooling, wash and slice strawberries right into crust until full (leave room for pudding/gelatin though!).</p>
<p>When pudding/gelatin mixture has cooled down, pour it over strawberries. Refrigerate until set, about 4 hours. Top with Redi-whip or Cool Whip. Yummo.</p>
<p>Side note: you might not be able to fit in all the pudding/gelatin mixture&#8230;it just depends on how many strawberries you put in the crust.</p>
<p>I think it would be great to add in other fresh berries.</p>
<p>I have to make two pies because everyone has to eat at least 2 slices. If you aren&#8217;t watching your figure (I dislike people like you&#8211;btw&#8211;*wink*), you could use regular pudding and gelatin instead of the sugar free.<br />
</p>
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		<title>A 41-year old woman should not&#8230;..</title>
		<link>http://cdls.wordpress.com/2008/07/10/a-41-year-old-woman-should-not/</link>
		<comments>http://cdls.wordpress.com/2008/07/10/a-41-year-old-woman-should-not/#comments</comments>
		<pubDate>Thu, 10 Jul 2008 14:24:53 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
		<category><![CDATA[Uncategorized]]></category>

		<category><![CDATA[bowling]]></category>

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		<description><![CDATA[

Lukas &#38; Robert
Originally uploaded by baysmom3
This past week I&#8217;ve been inspired by the 41-year-old swimmer, Dana Torres.  Not because I&#8217;m a fan of swimming, because I&#8217;m not, but because she&#8217;s my age and showing the world that 41 isn&#8217;t old!   You go girl!
However, I found out I&#8217;m no Dana Torres.  Last [...]]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><div style="float:right;margin-left:10px;margin-bottom:10px;"><a title="photo sharing" href="http://www.flickr.com/photos/baysmom3/2655107993/"><img style="border:solid 2px #000000;" src="http://farm4.static.flickr.com/3204/2655107993_d3e70734da_m.jpg" alt="" /></a></p>
<p><span style="font-size:0.9em;margin-top:0;"><br />
<a href="http://www.flickr.com/photos/baysmom3/2655107993/">Lukas &amp; Robert</a></span></p>
<p>Originally uploaded by <a href="http://www.flickr.com/people/baysmom3/">baysmom3</a></div>
<p>This past week I&#8217;ve been inspired by the 41-year-old swimmer, Dana Torres.  Not because I&#8217;m a fan of swimming, because I&#8217;m not, but because she&#8217;s my age and showing the world that 41 isn&#8217;t old!   You go girl!</p>
<p>However, I found out I&#8217;m no Dana Torres.  Last night we went to an &#8220;extreme bowling&#8221; event where you get a lane for three and half hours and you can bowl as much as you want for a flat fee.</p>
<p>Big mistake.</p>
<p>A 41 year-old woman should not bowl 5 games+ in a row.  I&#8217;m paying dearly for it today.</p>
<p>How do my kids feel?  They want to go bowling again today.</p>
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		<title>Blueberry muffins!</title>
		<link>http://cdls.wordpress.com/2008/07/07/blueberry-muffins/</link>
		<comments>http://cdls.wordpress.com/2008/07/07/blueberry-muffins/#comments</comments>
		<pubDate>Mon, 07 Jul 2008 14:25:49 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
		<category><![CDATA[Cornelia de Lange Syndrome]]></category>

		<category><![CDATA[cdls]]></category>

		<category><![CDATA[blueberry muffin recipe]]></category>

		<category><![CDATA[routine change]]></category>

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		<description><![CDATA[

Blueberry muffins!
Originally uploaded by baysmom3
I got this recipe from Karen (from Ben &#38; His Brother&#8217;s fame).  They were yummy!  Thanks Karen!  (Please excuse my ugly muffin tin!)
Today Baylee started summer school.  It&#8217;s only two hours long for three weeks, but with the bus trip, I might get 3 hours of peace and [...]]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><div style="float:right;margin-left:10px;margin-bottom:10px;"><a title="photo sharing" href="http://www.flickr.com/photos/baysmom3/2646314132/"><img style="border:solid 2px #000000;" src="http://farm4.static.flickr.com/3101/2646314132_6bbda773f3_m.jpg" alt="" /></a></p>
<p><span style="font-size:0.9em;margin-top:0;"><br />
<a href="http://www.flickr.com/photos/baysmom3/2646314132/">Blueberry muffins!</a></span></p>
<p>Originally uploaded by <a href="http://www.flickr.com/people/baysmom3/">baysmom3</a></div>
<p>I got this recipe from Karen (from <a href="http://kfb1.wordpress.com/">Ben &amp; His Brother&#8217;s</a> fame).  They were yummy!  Thanks Karen!  (Please excuse my ugly muffin tin!)</p>
<p>Today Baylee started summer school.  It&#8217;s only two hours long for three weeks, but with the bus trip, I might get 3 hours of peace and quiet.  I can even unlock the doors!</p>
<p>Unfortunately, this is a double whammy for Baylee with routine change.  We are getting new windows installed in our house today, and when that window truck pulled up, she ran outside to see it and screamed and screamed and screamed&#8230;..  I&#8217;m sure the neighbors thought I was beating her&#8230;.lol.   Sometimes I really wish I could get in her head to know what she is thinking.  Fortunately, she warmed up to the installation guys, then the bus came, so now she has other routine changes to worry about.  She&#8217;s also going to a different school than she usually goes to and there will be new teachers to test.  I&#8217;m sure Baylee&#8217;s going to be a lot of fun to be around today!</p>
<p>She also didn&#8217;t sleep last night.  At 3:30 am I found her still standing in the hall playing with her baby.  We had to move her bed away from the windows and take down valances, curtains and blinds, plus move furniture away from windows in other rooms.  Bottom line, she&#8217;s pretty freaked out.  Unfortunately, the window guys will probably be here for three days.</p>
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		<title>More conference bits</title>
		<link>http://cdls.wordpress.com/2008/07/05/more-conference-bits/</link>
		<comments>http://cdls.wordpress.com/2008/07/05/more-conference-bits/#comments</comments>
		<pubDate>Sat, 05 Jul 2008 16:14:41 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
		<category><![CDATA[Cornelia de Lange Syndrome]]></category>

		<category><![CDATA[cdls]]></category>

		<category><![CDATA[photography]]></category>

		<category><![CDATA[Positive Exposure]]></category>

		<category><![CDATA[Rick Guidotti]]></category>

		<guid isPermaLink="false">http://cdls.wordpress.com/2008/07/05/more-conference-bits/</guid>
		<description><![CDATA[

Rick Guidotti &#38; Emma
Originally uploaded by baysmom3
I wanted to put in a plug for the photographer.  Rick Guidotti, that was at the CdLS Conference last week.  He had an infectious personality and was able to capture the beauty of our kids all throughout the weekend.  For those of us with kids with genetic [...]]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><div style="float:right;margin-left:10px;margin-bottom:10px;"><a title="photo sharing" href="http://www.flickr.com/photos/baysmom3/2627007124/"><img style="border:solid 2px #000000;" src="http://farm4.static.flickr.com/3182/2627007124_a801c762f3_m.jpg" alt="" /></a></p>
<p><span style="font-size:0.9em;margin-top:0;"><br />
<a href="http://www.flickr.com/photos/baysmom3/2627007124/">Rick Guidotti &amp; Emma</a></span></p>
<p>Originally uploaded by <a href="http://www.flickr.com/people/baysmom3/">baysmom3</a></div>
<p>I wanted to put in a plug for the photographer.  <a href="http://positiveexposure.org/bio.html">Rick Guidotti</a>, that was at the CdLS Conference last week.  He had an infectious personality and was able to capture the beauty of our kids all throughout the weekend.  For those of us with kids with genetic differences, his mission is one close to all our hearts.</p>
<p>Please visit his site at <a href="http://www.positiveexposure.org/">Positive Exposures &#8212; the Spirit of Difference</a> and consider supporting his organization.</p>
<p>More conference &#8220;bits&#8221; coming later.</p>
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		<title>Happy Birthday America!</title>
		<link>http://cdls.wordpress.com/2008/07/04/happy-birthday-america/</link>
		<comments>http://cdls.wordpress.com/2008/07/04/happy-birthday-america/#comments</comments>
		<pubDate>Fri, 04 Jul 2008 04:44:19 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
		<category><![CDATA[Cornelia de Lange Syndrome]]></category>

		<category><![CDATA[cdls]]></category>

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		<description><![CDATA[

Happy Birthday America!
Originally uploaded by baysmom3

We are very grateful to be living in the greatest nation on God&#8217;s green Earth!
       ]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><div style="float:right;margin-left:10px;margin-bottom:10px;"><a title="photo sharing" href="http://www.flickr.com/photos/baysmom3/2634241765/"><img style="border:solid 2px #000000;" src="http://farm4.static.flickr.com/3167/2634241765_c6858892bb_m.jpg" alt="" /></a></p>
<p><span style="font-size:0.9em;margin-top:0;"><br />
<a href="http://www.flickr.com/photos/baysmom3/2634241765/">Happy Birthday America!</a></p>
<p>Originally uploaded by <a href="http://www.flickr.com/people/baysmom3/">baysmom3</a><br />
</span></div>
<p>We are very grateful to be living in the greatest nation on God&#8217;s green Earth!</p>
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		<title>A need for speed!</title>
		<link>http://cdls.wordpress.com/2008/07/02/a-need-for-speed/</link>
		<comments>http://cdls.wordpress.com/2008/07/02/a-need-for-speed/#comments</comments>
		<pubDate>Wed, 02 Jul 2008 21:45:28 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
		<category><![CDATA[Cornelia de Lange Syndrome]]></category>

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		<category><![CDATA[trek mod]]></category>

		<guid isPermaLink="false">http://cdls.wordpress.com/?p=101</guid>
		<description><![CDATA[Baylee has boundless energy so she needs exercise&#8230;.and LOTS of it.  Today we braved the heat and humidity to go for a bike ride.  We have some bike trails in our neighborhood that are protected from the streets, so when we are there we can just let her ride on her own as [...]]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>Baylee has boundless energy so she needs exercise&#8230;.and LOTS of it.  Today we braved the heat and humidity to go for a bike ride.  We have some bike trails in our neighborhood that are protected from the streets, so when we are there we can just let her ride on her own as fast as she wants.  As you can see from this video, Baylee has a need for speed!</p>
<p><span style="text-align:center; display: block;"><a href="http://cdls.wordpress.com/2008/07/02/a-need-for-speed/"><img src="http://img.youtube.com/vi/YshcSmHGdr4/2.jpg" alt="" /></a></span></p>
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		<title>Sometimes our adventures aren&#8217;t that fun&#8230;.</title>
		<link>http://cdls.wordpress.com/2008/07/01/sometimes-our-adventures-arent-that-fun/</link>
		<comments>http://cdls.wordpress.com/2008/07/01/sometimes-our-adventures-arent-that-fun/#comments</comments>
		<pubDate>Tue, 01 Jul 2008 23:58:40 +0000</pubDate>
		<dc:creator>cdls</dc:creator>
		
		<category><![CDATA[Cornelia de Lange Syndrome]]></category>

		<category><![CDATA[Sprint store lincoln nebraska]]></category>

		<guid isPermaLink="false">http://cdls.wordpress.com/?p=97</guid>
		<description><![CDATA[DH&#8217;s PDA died today and it&#8217;s his brain. He has to have one for his job. We were in the Sprint store checking out the PDA phones so maybe he could combine his two devices. Baylee was in a &#8220;mood&#8221;&#8230;..one of her autistic-like behavior moods.   (Just another day like any other&#8230;.)
Baylee is non-verbal, [...]]]></description>
			<content:encoded><![CDATA[<div class='snap_preview'><br /><p>DH&#8217;s PDA died today and it&#8217;s his brain. He has to have one for his job. We were in the Sprint store checking out the PDA phones so maybe he could combine his two devices. Baylee was in a &#8220;mood&#8221;&#8230;..one of her autistic-like behavior moods.   (Just another day like any other&#8230;.)</p>
<p>Baylee is non-verbal, but does engage people. Because she lacks speech, her way of engaging people is to either touch them with her hand or with her foot. If I have a hold of her arms, she&#8217;ll use her feet. She never &#8220;kicks&#8221; or hurts people (it&#8217;s much more of a firm touch than a kick) but of course, her foot touching can be interpreted as being a kick. And yes, I know she is invading personal space. Trust me, it mortifies me every time she does it. I&#8217;d give EVERYTHING I have in the world to make her act normally.</p>
<p>In the store, Baylee was squirrely, so I had a good hold on her arms. A lady was perusing some phones nearby and Baylee foot tapped her. The lady turned around and yelled &#8220;<strong>Do NOT kick me</strong>!&#8221;. Then she gasped when she saw Baylee&#8217;s face because it obviously occurred to her that Baylee&#8217;s NOT &#8220;normal&#8221;.  The gasp offended me almost more than the yelling.</p>
<p>I was furious inside. I wanted to say &#8220;Yelling at her will not make her stop. A little tolerance and understanding go a long way.&#8221;</p>
<p>But I didn&#8217;t.  I was so mad I couldn&#8217;t think of it at the moment, so now I&#8217;m mad at myself for not being quick.  I&#8217;ve never encountered this before because most people are quite understanding and can see that <em>maybe</em> there&#8217;s a reason Baylee has strange behaviors just by looking at her.  I was at a loss for words.</p>
<p>Instead my DH piped up &#8220;She&#8217;s special and she&#8217;s sorry&#8221;. Then I told Baylee to sign &#8220;Sorry&#8221;&#8230;.which is practically meaningless to Baylee, but I did it for that woman&#8217;s benefit even though it should have been the woman apologizing for yelling at a child with special needs. She shouldn&#8217;t have yelled at ANY child, especially one that small anyway, regardless of ability.</p>
<p>Anyway&#8230;.I&#8217;m angry &amp; annoyed, and feeling guilty because it&#8217;s not Christian to be angry about this. I think it&#8217;s possible God made Baylee kick for this woman&#8217;s benefit and maybe now that woman is rethinking how she treats others. Maybe it was a lesson SHE needed to learn. I just wish Baylee and I didn&#8217;t have to be a part of it.</p>
<p>The devil in me is sure hoping this woman learned a lesson today because I found it pretty painful.  It better have been worth it.</p>
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