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	<title>Girl in a Party Hat &#187; doc band</title>
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		<title>Ghost Story</title>
		<link>http://girlinapartyhat.com/index.php/2010/02/ghost-story/</link>
		<comments>http://girlinapartyhat.com/index.php/2010/02/ghost-story/#comments</comments>
		<pubDate>Mon, 01 Feb 2010 23:42:04 +0000</pubDate>
		<dc:creator><![CDATA[Amysilverman]]></dc:creator>
				<category><![CDATA[health]]></category>
		<category><![CDATA[cranial technology]]></category>
		<category><![CDATA[doc band]]></category>
		<category><![CDATA[Down syndrome]]></category>
		<category><![CDATA[Laurie Notaro]]></category>
		<category><![CDATA[spooky little girl]]></category>

		<guid isPermaLink="false">http://girlinapartyhat.com/?p=2221</guid>
		<description><![CDATA[Maybe it was because I was reading a ghost story at the time (specifically, &#8220;Spooky Little Girl&#8221; &#8211; the latest book by my dear friend, the prolific and hilarious Laurie Notaro &#8212; it&#8217;ll be out in April) or maybe it&#8217;s just because I scare easily. But I literally jumped and squealed when I looked inside a blue plastic bag shoved [&#8230;]]]></description>
				<content:encoded><![CDATA[<p><img class="alignnone size-full wp-image-2222" title="helmet1" src="http://girlinapartyhat.com/wp-content/uploads/2010/02/helmet1.jpg" alt="helmet1" /></p>
<p>Maybe it was because I was reading a ghost story at the time (specifically, &#8220;Spooky Little Girl&#8221; &#8211; the latest book by my dear friend, the prolific and hilarious Laurie Notaro &#8212; it&#8217;ll be out in April) or maybe it&#8217;s just because I scare easily.</p>
<p>But I literally jumped and squealed when I looked inside a blue plastic bag shoved in the back of a cabinet and found Sophie&#8217;s head.</p>
<p>When Sophie was three months old, we finally had our appointment with the geneticist, the guy who was supposed to impart all kinds of knowledge but really didn&#8217;t tell us anything Ray hadn&#8217;t already researched himself about Down syndrome.</p>
<p>As we were leaving his office, the geneticist pointed to the rather-flat back of Sophie&#8217;s head and warned, &#8220;You better do something about that head soon!&#8221;</p>
<p>Looking back, I can&#8217;t believe I listened to him. But I did. We got her one of those $5,000-not-covered-by-insurance helmets to round out her flat head. And turns out, I&#8217;ve still got the helmet &#8212; and the mold they made of Sophie&#8217;s head &#8212; to prove it.</p>
<p>I&#8217;m not knocking those helmets. One of my writers did a <a href="http://www.phoenixnewtimes.com/2005-05-05/news/head-games&amp;page=34">terrific story </a>about DOC bands  &#8211; they were invented here in Arizona, and have saved many children with serious cranial deformities from expensive and dangerous surgery.</p>
<p>But I&#8217;m not sure Sophie really needed the helmet at all. Which is a good thing, since it didn&#8217;t do much for her. To be fair to the folks who sold it to us, she didn&#8217;t wear it constantly, as required. Poor baby Sophie quickly rubbed herself a huge &#8220;hot spot&#8221; (yes, like the kind dogs get &#8212; looked just like that) on her head, and couldn&#8217;t wear the helmet much at all.</p>
<p>In a way, I was flattered when the geneticist told us to fix her head &#8212; even though at the time we were days away from open-heart surgery, and clearly had bigger fish to fry. To me, it meant Sophie was worth something, that it wasn&#8217;t okay to let her walk around with a flat head.</p>
<p>Today, when we&#8217;re cuddling, and I feel that flat spot on the back of her skull &#8212; I don&#8217;t think you can see it at all with her hair over it, at least I don&#8217;t notice it &#8212; I wince, hating that I gave her even a moment&#8217;s discomfort with that dumb helmet.</p>
<p>And yet, I couldn&#8217;t just throw the thing away. Sophie was fascinating with my find &#8212; and played with the DOC band for a while. Then I shoved the mold and the helmet back in the blue bag and hid it away high in her closet. Not a bad ghost to have to confront once in a while, I figure.   </p>
<p><img class="alignnone size-full wp-image-2223" title="helmet2" src="http://girlinapartyhat.com/wp-content/uploads/2010/02/helmet2.jpg" alt="helmet2" /></p>
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		<title>Some St. Patrick&#039;s Day Magic</title>
		<link>http://girlinapartyhat.com/index.php/2009/03/some-st-patricks-day-magic/</link>
		<comments>http://girlinapartyhat.com/index.php/2009/03/some-st-patricks-day-magic/#comments</comments>
		<pubDate>Tue, 17 Mar 2009 19:28:37 +0000</pubDate>
		<dc:creator><![CDATA[Amysilverman]]></dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[doc band]]></category>
		<category><![CDATA[flat heads on babies]]></category>
		<category><![CDATA[leprechaun putting gold coins in your shoe]]></category>
		<category><![CDATA[St. Patrick's Day]]></category>
		<category><![CDATA[sudden infant death syndrome and back sleeping]]></category>

		<guid isPermaLink="false">http://girlinapartyhat.wordpress.com/?p=1044</guid>
		<description><![CDATA[Ms. X called last night. &#8220;Leprechauns came to my classroom!&#8221; &#8220;Really?&#8221; I asked, just a split second before I got it,  even though I had a St. Patrick&#8217;s Day plan, too. I&#8217;d bought gold-wrapped chocolate coins (AKA Chanukah gelt) to put in the girls&#8217; shoes, because Annabelle had told me a few weeks ago that on [&#8230;]]]></description>
				<content:encoded><![CDATA[<p>Ms. X called last night.</p>
<p>&#8220;Leprechauns came to my classroom!&#8221;</p>
<p>&#8220;Really?&#8221; I asked, just a split second before I got it,  even though I had a St. Patrick&#8217;s Day plan, too. I&#8217;d bought gold-wrapped chocolate coins (AKA Chanukah gelt) to put in the girls&#8217; shoes, because Annabelle had told me a few weeks ago that on St. Patrick&#8217;s Day you leave your shoe out overnight and the leprechaun puts a gold coin in it.</p>
<p>For all my love of holidays, I haven&#8217;t ever really gotten into the St. Patty&#8217;s thing. My memories of the day involve vomiting green beer and getting pinched because I refuse to dress in anything but black. I thought Ms. X had told Annabelle about the coin in the shoe, but when I asked her for details yesterday, she swore ignorance.</p>
<p>Maybe it was my mother in law. She was 100% Irish, making the girls a quarter each, and even if I can&#8217;t make a corned beef (not that I recall my MIL ever doing that) I figure I can honor her memory by celebrating St. Patrick&#8217;s Day. (And her name was Patricia &#8212; making it even more appropriate.)</p>
<p>Anyhow, I was out last night at a friend&#8217;s book signing and had to frantically call Annabelle to remind her to put out her shoe.</p>
<p>&#8220;Now, which one is it?&#8221; I asked. &#8220;The left one!&#8221; she reminded me. When I got home, she&#8217;d put left shoes out for the whole family. And she left a note (I was flustered, trying to write a response &#8212; even though I should have predicted this, given her Tooth Fairy proclivities) asking: What is your name? (&#8220;Larry&#8221;); What is your favorite color? (&#8220;Green&#8221;); and Why do you put coins in our shoes? (&#8220;Because you&#8217;re good girls!&#8221;)</p>
<p><img class="alignnone size-full wp-image-1048" title="st-pat" src="http://girlinapartyhat.files.wordpress.com/2009/03/st-pat.jpg" alt="st-pat" /></p>
<p>As an after thought, I sprinkled some glitter on the note and the shoes. (No one noticed I&#8217;d spelled leprechaun incorrectly; I just realized it myself, damnit. And Annabelle brought the letter for show and tell!) Both girls were thrilled.</p>
<p>Which is good. I figure we can use a little magic around our house. The pixie dust from Disneyland has worn off and with Spring Break over, the slipperly slope into the End of the School Year and Summer has begun.</p>
<p>For us, here in too-sunny Phoenix, anticipating summer is akin to bracing oneself for multiple snow days, only without the benefit of outwear to stave off the elements. Here, you just grin and bear it and try to get out of town as much as possible.</p>
<p>But it&#8217;s still March, so I&#8217;m going to do my best to put that out of my mind. Trust me, there&#8217;s plenty to displace it. Yesterday I was on the phone with Sophie&#8217;s occupational therapist for an hour. She was reading regulations on the Web, trying to convince me that Sophie&#8217;s IQ won&#8217;t dictate whether she continues to get services &#8212; until she got to the part in the regulations where it says just that, and abruptly changed her mind.</p>
<p>&#8220;Yeah, I knew that,&#8221; I said wearily. It&#8217;s not her fault, she was only trying to navigate a system no one seems to be able to navigate. She did confirm that if Sophie loses state authorization, our private insurance will ditch us on the therapies, too.</p>
<p>Super.</p>
<p>So the gold coins made a nice distraction. And I couldn&#8217;t wait for Sophie to see Ms. X&#8217;s classroom &#8212; with the overturned chairs, shamrock stickers, hidden notes and leprechaun footprints.</p>
<p>Too bad I forgot about the appointment to get her feet cast. It wasn&#8217;t til I was turning onto the freeway this morning &#8212; having left Ray to bring Annabelle to school &#8212; that I realized Sophie would miss the whole leprechaun thing.</p>
<p>I&#8217;d been rescheduling this appointment for months (literally). Since before she could walk, Sophie&#8217;s been wearing foot braces. For a while, she wore them constantly. We&#8217;ve gotten bad about putting her in them, now that she can walk easily on her own. (To be honest, her feet still do cave in at the ankles, but you know, so do mine, a little.) The braces really restrict her shoe choice &#8212; leading to many a pity party for me in the days when all Sophie could wear were clunky white sneakers.</p>
<p>But the truth is that she probably would have walked at 5 instead of at 3, without that extra support. She needed the braces &#8212; still needs them sometimes &#8212; and I&#8217;m grateful to our physical therapist (yeah, the one we&#8217;ll likely lose because Sophie&#8217;s IQ is too high) for pushing for them.</p>
<p>This time, the physical therapist assured me that Sophie&#8217;s ready to ditch the clunkier braces for a custom-fitted insert that will fit in just about any shoe. Like I said, I&#8217;d been putting the appointment off forever. So I pushed past the desire to turn around and go back to see the leprechaun&#8217;s work, and we went to deal with Sophie&#8217;s feet.</p>
<p>The guy who cast Sophie&#8217;s feet (less painful than it sounds) was very nice, although when I pointed to a poster on the wall of a kid with a helmet  and started asking questions, he ignored me.</p>
<p>I guess I was asking loaded questions. Warning: Here comes a Great Big Aside.</p>
<p>Sophie wore one of those &#8220;doc bands&#8221; when she was a baby. You might have heard of them, they&#8217;re now very popular.</p>
<p>Not so long ago, when your baby&#8217;s head was misshapen (often an unintended byproduct of back sleeping, which is done to prevent Sudden Infant Death Syndrome) doctors would actually operate. Then a smart woman discovered you could make a helmet that would round out the head with no invasive procedures.</p>
<p>Sophie wore one. It didn&#8217;t work. Now, the main reason it didn&#8217;t work, I think, is because the helmet rubbed a raw spot on her head and she wasn&#8217;t able to wear it enough. But I also think it didn&#8217;t work because she has Down syndrome, and like many people with DS, the back of her head is very flat. The poster on the wall at this orthotics place had pictures of three babies and their misshapen heads: One looked just like he had DS. (This was not, by the way, the place where we got the helmet Sophie wore.)</p>
<p>So my question was, can you make the head of a baby with DS less flat with one of those helmets, or is that just how the head is going to be? And secondarily, does it matter? (Sometimes there are serious brain issues associated with the flattened/misshapen heads.)</p>
<p>The guy completely blew me off. He didn&#8217;t even say, &#8220;I don&#8217;t know.&#8221; He just ignored me. I didn&#8217;t pursue it. Really, I was just trying to make conversation, although it issomething that&#8217;s been bugging me.</p>
<p>But that didn&#8217;t bug me as much as what the guy did say.</p>
<p>That prescription for the shoe insert? &#8220;No, that won&#8217;t work,&#8221; he said. Not because that&#8217;s not what Sophie needs. &#8220;Insurance won&#8217;t cover it unless the brace comes up above her ankle,&#8221; he explained.</p>
<p>He didn&#8217;t even mention the price tag, which means these things are nowhere near affordable.  </p>
<p>And so Sophie picked out a new pattern for yet another set of plastic braces (I urged her toward &#8220;Dark Sky&#8221; instead of soon-to-be-dirty white with teddy bears) and we headed to school.</p>
<p>She&#8217;d missed the initial excitement of the leprechaun&#8217;s visit (Ms. X&#8217;s leprechaun is appropriately named &#8220;O&#8217;Reilly,&#8221; making me realize how dumb &#8220;Larry&#8221; sounds) but the kids were running around putting stickers on each other and drawing pictures, still excited by the discovery.</p>
<p>Sophie mixed right in, telling her friends about the gold coin in her shoe (&#8216;The whole family!&#8221; she said) and running to get her journal and show me the carousel she drew yesterday.</p>
<p>Then Ms. X had her show me something else: Sophie&#8217;s been writing down her sight words (&#8220;in,&#8221; &#8220;the,&#8221; &#8220;go,&#8221; &#8220;to,&#8221; etc) herself, spelling them correctly and everything.</p>
<p>Ms. X looked at the book, then looked at me. &#8220;Now I&#8217;m going to cry,&#8221; she said.</p>
<p>It was pretty magical.</p>
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