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	<title>Glycogen Storage Disease - StarchWars &#187; Gainesville</title>
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	<description>Glycogen Storage Disease</description>
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		<title>Day 2: Shands hospital</title>
		<link>http://starchwars.com/2009/05/day-2-shands-hospital/</link>
		<comments>http://starchwars.com/2009/05/day-2-shands-hospital/#comments</comments>
		<pubDate>Mon, 18 May 2009 02:29:42 +0000</pubDate>
		<dc:creator>Jillian</dc:creator>
				<category><![CDATA[Glycogen Storage Disease]]></category>
		<category><![CDATA[Hospitals]]></category>
		<category><![CDATA[Traveling]]></category>
		<category><![CDATA[Florida]]></category>
		<category><![CDATA[Gainesville]]></category>
		<category><![CDATA[Shand's Hospital]]></category>

		<guid isPermaLink="false">http://starchwars.com/?p=130</guid>
		<description><![CDATA[Alright, bright and early the next morning, we&#8217;re off. We needed to be out the door at 7am our time in order to make it to admissions at the right time. The boys cooperated (a rare and precious novelty) and we were on our way in record time.

As many of you know, you receive a [...]]]></description>
			<content:encoded><![CDATA[<p>Alright, bright and early the next morning, we&#8217;re off. We needed to be out the door at 7am our time in order to make it to admissions at the right time. The boys cooperated (a rare and precious novelty) and we were on our way in record time.</p>
<p style="margin-bottom: 0in;">
<p style="margin-bottom: 0in;">As many of you know, you receive a parking permit in the handy dandy packet that they send you a couple weeks before your arrival. The only problem is the parking garage is on the opposite side of the hospital than admissions and the Clinical Research Center. I was used to and expecting this, but it was a bit new to my dear old dad. It wasn&#8217;t too bad this time because we&#8217;d brought the double stroller and most of the stuff we needed fit in it. But I heard a few snide comments from the peanut gallery since I had to get a running start to get up the hills (I&#8217;m glad I could make their day). The older boys had to walk, and while they weren&#8217;t too excited I knew it would be good to get some energy out before they were cooped up for any length of time.</p>
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<p style="margin-bottom: 0in;">Admissions was alright. They were very friendly at the front desk, and I think one of the receptionists was checking out my dad (ewwww- he really needs to start wearing his wedding ring), but they were pretty busy, so it took a little longer than usual. I have to say, I REALLY miss having Connie in admissions. Thankfully, we get to see her even more now as the GSD program coordinator. My dad took the boys on another potty break, and it was time for cornstarch.</p>
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<p style="margin-bottom: 0in;">I decided to race upstairs to our room to do cornstarch even though it would be a few minutes late. Unfortunately, the place is a maze. I had written directions from the little packet, verbal directions from the admissions receptionists and I still got a little lost at the elevators. I would have felt really sheepish if we hadn&#8217;t asked for directions from people who&#8217;d worked at Shand&#8217;s a couple of years- and then they got a little turned around. At least I remembered where it was for the rest of the trip, right?</p>
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<p style="margin-bottom: 0in;">As always, as soon as we walked through the CRC doors, there was immediate relief. It&#8217;s the one place where I never have to worry about cornstarch being on time, or if the food they&#8217;re giving the boys is “GSD friendly”. The same nurses the boys always have were there waiting for us  (and they weren&#8217;t even dreading it). They had Jonny and Dallin&#8217;s room all ready, and we had cornstarch done in a flash. We got to see Dr. Weinstein within minutes, and we even got to meet another family with two GSD daughters. Always exciting.</p>
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<p style="margin-bottom: 0in;"><a href="http://starchwars.com/wp-content/uploads/2009/05/img_4008.jpg"><img class="alignright size-medium wp-image-164" title="img_4008" src="http://starchwars.com/wp-content/uploads/2009/05/img_4008-195x300.jpg" alt="img_4008" width="195" height="300" /></a>My only complaint is that they can only admit two GSD patients at a time. Sad for me, but since even I get the boys confused- and i&#8217;m not taking blood every hour as well as urine samples- I can&#8217;t really blame them.     <img src='http://starchwars.com/wp-includes/images/smilies/icon_smile.gif' alt=':-)' class='wp-smiley' />    Jonny and Dallin were admitted first and later that morning my dad took Mark and Ethan for a day on the town.</p>
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<p style="margin-bottom: 0in;">It only took one poke each for Dallin and Jonny to get their I.V.s. It&#8217;s always been 2 or 3 times before, but it&#8217;s been almost a year and a half since the last time they needed one. Both of the boys were really brave and I must say I think I&#8217;ve perfected my technique for holding the boys down while the nurses are placing them. We were so proud. Hardly any screaming and no tears at all- and they even said “thank you” when they&#8217;d finished. Of course, they were loaded up with toys from the treasure box for their bravery.</p>
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<p style="margin-bottom: 0in;">Speaking of toys&#8230;  Every time Dr. Weinstein came through the door “Who wants presents?!?!?” would announce his arrival- it was insane! He spoiled the kids rotten, and enjoyed it every bit as much as they did. Even so, Jonny was naturally wary of anyone wearing a stethascope. It wasn&#8217;t until later that night when things had calmed down a bit that he took Jonny (an avid Toy Story fan) to see Buzz Lightyear&#8217;s “space ship”. From that moment on Dr. Weinstein was Jonny&#8217;s best friend, and “space ship?” was the first thing out of Jonny&#8217;s mouth whenever he saw Dr. Weinstein.</p>
<p style="margin-bottom: 0in;">
<div id="attachment_177" class="wp-caption alignleft" style="width: 310px"><a href="http://starchwars.com/wp-content/uploads/2009/05/floridamuseumofnaturalhistory.jpg"><img class="size-medium wp-image-177" title="floridamuseumofnaturalhistory" src="http://starchwars.com/wp-content/uploads/2009/05/floridamuseumofnaturalhistory-300x114.jpg" alt="Forida Museum of Natural History" width="300" height="114" /></a><p class="wp-caption-text">Forida Museum of Natural History</p></div>
<p>Mark and Ethan had a great time that day. Grandpa took them to the <a href="http://www.flmnh.ufl.edu/">Florida Museum of Natural History</a>. They had a blast, especially at the butterfly exhibit. It&#8217;s one of their favorite memories of the trip. He even took them to Texas Roadhouse for some steak. Spoiled kids.</p>
<p style="margin-bottom: 0in;">My dad came back at about 8:00pm and I took the older boys back to the hotel while he slept at the hospital with the little two. This sounds cruel to do to an almost senior citizen, but as anyone who wakes up multiple times a night to do cornstarch knows, Shand&#8217;s is a vacation resort. Besides, I&#8217;d promised I&#8217;d take Mark and Ethan swimming and my dad wasn&#8217;t very comfortable with checking blood sugars like you need to after swimming.</p>
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<p style="margin-bottom: 0in;">To be continued&#8230;</p>
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