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	<title>spoken for</title>
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	<description>hmmm... what?</description>
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		<title>MRIs, lazy eyes, and chemo&#8230; oh, my.</title>
		<link>http://spoken-for.org/archives/2010/03/12/2882/</link>
		<comments>http://spoken-for.org/archives/2010/03/12/2882/#comments</comments>
		<pubDate>Sat, 13 Mar 2010 02:03:35 +0000</pubDate>
		<dc:creator>Val</dc:creator>
				<category><![CDATA[Days Go By]]></category>
		<category><![CDATA[chemo]]></category>
		<category><![CDATA[eyes]]></category>
		<category><![CDATA[health]]></category>
		<category><![CDATA[nystagmus]]></category>

		<guid isPermaLink="false">http://spoken-for.org/?p=2882</guid>
		<description><![CDATA[Monday was K&#8217;s appointment with the neurologist.  He asked lots of questions, observed her, and checked her out.  Since she still has the nystagmus and sometimes holds her head in a strange way to look out of the corner of her eyes (rather than straight ahead) and since sometimes when she turns her [...]]]></description>
			<content:encoded><![CDATA[<p>Monday was K&#8217;s appointment with the neurologist.  He asked lots of questions, observed her, and checked her out.  Since she still has the <a href="http://en.wikipedia.org/wiki/Nystagmus" target="_blank">nystagmus</a> and sometimes holds her head in a strange way to look out of the corner of her eyes (rather than straight ahead) and since sometimes when she turns her head her eyes will follow late, he&#8217;s ordered an MRI.  We know that the nystagmus is not caused by a problem in her eyes (according to the pediatric ophthalmologist) so this is the next step.  The neurologist says that it could be caused by something in her brain but the other end of that is that if they don&#8217;t find it with the MRI, then it&#8217;s &#8220;just one of those things&#8221; and we may never know why it happens and she might grow out of it.  A good thing to hear, too, was that he said the grade 1 brain hemorrhage is pretty much inconsequential.  He said that almost always those grade 1&#8217;s amount to nothing.  That is very good to know, the back of my mind has always been concerned with that maybe causing problems for her in the future.  He also said that the main concern of the nystagmus, at least right now, is that it could cause tracking problems for her in the future, such as when she&#8217;s trying to read and needs to follow along a page in a line, etc.<br />
<span id="more-2882"></span><br />
So the MRI has been set and pre-certified by our insurance so we&#8217;re good to go.  It&#8217;s not going to be fun, though.  They&#8217;re going to have to sedate her because there is no way she&#8217;ll hold still long enough.  And so that also means that we have to be up there at 8:15am that day and she&#8217;s not allowed to have anything to drink or eat after midnight.  That part is going to stink because she&#8217;s going to get VERY cranky.  But who can blame her??</p>
<p>My father-in-law had his second round of chemo the other day.  He&#8217;s already losing his hair, too.  I don&#8217;t know how long that usually takes to get started for people, but it&#8217;s going quickly on him.  I was so hoping he&#8217;d keep his hair, I know he really wanted to, but I don&#8217;t guess anyone is surprised.  Unlike most men his age (and younger &#8212; including his 3 sons) he still has (now had) a full hair.  Hopefully it will grow back when it&#8217;s all said and done.  Elijah, however, is waiting because he&#8217;s decided that if Grandpa is going to be bald, so will he.  I&#8217;ve promised him that when Grandpa loses the last bit of his hair, he can shave his all off.  This oughta be interesting.  But anyway, hair is really inconsequential, as we know.  His treatments have been going well so far and he has to go in every 3 weeks.  The doctors did tell him that they are unable to find signs of cancer outside of his lymph nodes, so it looks pretty isolated and looks like they caught it at a good time.  (As good as anything can be when you&#8217;re talking cancer.)</p>
<p>Now this is really interesting, to us at least.  A couple of weeks ago, Elijah was acting like he couldn&#8217;t see the words on the book in front of his face.  We held it further away and such and he acted like he couldn&#8217;t see it.  I knew I needed an eye appointment so that same day I made an appointment for both of us, for me first so he could see it wasn&#8217;t so bad, then for him.  Of course, since that day, I&#8217;ve not seen him acting like he can&#8217;t see anything and he&#8217;s been going around the last few days yelling at me, &#8220;MAMA!  My eyes are perfectly FINE, I don&#8217;t need to go to the eye doctor!!&#8221;</p>
<p>But it was good I took him in anyway because it turns out that his left eye is lazy and is so far-sighted that if you take away the right eye, he can&#8217;t see anything at all.  The doctor would cover up E&#8217;s right eye and immediately E would start getting all nervous and said he couldn&#8217;t see anything at all and would fidget and try to get away from whatever it was covering his eyes.  The doctor said that he was probably born like this, but we never saw it because his lazy eye doesn&#8217;t include pointing in the right direction and his right eye is perfect (or very near perfect) and compensates very well.</p>
<p>The closest we came to noticing this was when Steve was teaching him how to shoot the BB gun.  Since he&#8217;s a lefty he&#8217;d hold the gun on his left side but he was leaning over to try to look through the sights with his right eye.  Steve came to the conclusion that he is right-eye dominant, though left handed.  It didn&#8217;t seem strange to us at the time probably, in part, because though we know his left hand is dominant, he almost seems cross-dominant at times.</p>
<p>But the doctor said it was good we found this out now.  He said that when they get more around age 11 or 12, that it becomes harder to fix this.  He seemed confident that this is fix-able and said that it&#8217;s also good that there&#8217;s not a cross-eyed or looking off in the wrong direction issue.  Elijah&#8217;s now going to go to the same pediatric ophthalmologist that K goes to.  She has a follow-up appointment in May and the office was kindly enough to let me work E in there at the same time. </p>
<p>Color me baffled, though, I had no idea that lazy eyes were more than an eye that looked in the wrong direction.  Apparently, I know nothing.</p>
<p>All this medical stuff has me going ahhhhhhhhhh when I think about our insurance running out but Steve called yesterday and we found out that the insurance is good through January 31, 2011.  </p>
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		<item>
		<title>so lame</title>
		<link>http://spoken-for.org/archives/2010/03/09/2879/</link>
		<comments>http://spoken-for.org/archives/2010/03/09/2879/#comments</comments>
		<pubDate>Wed, 10 Mar 2010 05:49:51 +0000</pubDate>
		<dc:creator>Val</dc:creator>
				<category><![CDATA[Days Go By]]></category>
		<category><![CDATA[cancer]]></category>
		<category><![CDATA[chemo]]></category>
		<category><![CDATA[family]]></category>
		<category><![CDATA[gosh-Im-lame]]></category>
		<category><![CDATA[health]]></category>
		<category><![CDATA[work]]></category>

		<guid isPermaLink="false">http://spoken-for.org/?p=2879</guid>
		<description><![CDATA[I&#8217;m so lame when it comes to updating lately.  It&#8217;s to my own detriment, however, as I&#8217;m really the one who cares and am the one likely to read the archives for various reasons.  So I guess it doesn&#8217;t really matter.  :P
Um, first round of chemo went well for my father-in-law.  [...]]]></description>
			<content:encoded><![CDATA[<p>I&#8217;m so lame when it comes to updating lately.  It&#8217;s to my own detriment, however, as I&#8217;m really the one who cares and am the one likely to read the archives for various reasons.  So I guess it doesn&#8217;t really matter.  :P</p>
<p>Um, first round of chemo went well for my father-in-law.  In fact, first they&#8217;d told him 3 days in a row, then when he went in, they said once a week, then afterward they said he didn&#8217;t have to go back for about 4 weeks.  I take this as a good sign.  Right?  So he&#8217;ll be back in there in a couple of days and hopefully this time will go well also.</p>
<p>The job didn&#8217;t pan out.  They sent me some lame letter that didn&#8217;t make any sense.  Whatever, I wasn&#8217;t really looking forward to the 50 thousand tests and vaccinations I&#8217;d have to get to work in a hospital, anyway, even if it was just clerical.</p>
<p>Steve&#8217;s still laid off and it&#8217;s been almost 2 months.  He doesn&#8217;t see anything turning around any time soon.  So far, we&#8217;re ok, but I&#8217;m going to have to learn to pay the vehicle bill earlier, or something, so it doesn&#8217;t fall so close to the mortgage.  Since we&#8217;re on a smaller budget now, of course.  On one hand, the union sucks in this respect because with him laid off, they&#8217;ve essentially taken all his chances at a livelihood in his field.  We&#8217;re starting to look at options outside of what he&#8217;s been trained to do.  He can&#8217;t work as an electrician unless it&#8217;s through the union.  It&#8217;s a catch-22.</p>
<p>I suppose that&#8217;s really it as far as lameness goes.  I&#8217;ll have to try to update more often as there are good things in my life, too.  Really, I&#8217;m pretty happy and content.  I just get nervous, here lately, when I think about what is going to happen when unemployment runs out if neither of us have found something?  That scares me, but a day at a time&#8230;</p>
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		</item>
		<item>
		<title>Snippets</title>
		<link>http://spoken-for.org/archives/2010/02/11/2873/</link>
		<comments>http://spoken-for.org/archives/2010/02/11/2873/#comments</comments>
		<pubDate>Fri, 12 Feb 2010 02:14:44 +0000</pubDate>
		<dc:creator>Val</dc:creator>
				<category><![CDATA[Days Go By]]></category>
		<category><![CDATA[cancer]]></category>
		<category><![CDATA[family]]></category>
		<category><![CDATA[remodeling]]></category>
		<category><![CDATA[thing 2]]></category>
		<category><![CDATA[work]]></category>

		<guid isPermaLink="false">http://spoken-for.org/?p=2873</guid>
		<description><![CDATA[Lots of stuff going on lately, my head is spinning.
1.  First and foremost, we were hit with the news this week that my father-in-law has cancer, lymphoma, to be exact.  From the link above:
&#8220;Lymphoma is a cancer that begins in the lymphocytes of the immune system and presents as a solid tumor of [...]]]></description>
			<content:encoded><![CDATA[<p>Lots of stuff going on lately, my head is spinning.</p>
<p>1.  First and foremost, we were hit with the news this week that my father-in-law has cancer, <a href="http://en.wikipedia.org/wiki/Lymphoma">lymphoma</a>, to be exact.  From the link above:</p>
<p>&#8220;Lymphoma is a cancer that begins in the lymphocytes of the immune system and presents as a solid tumor of lymphoid cells. It is treatable with chemotherapy, and in some cases radiotherapy and/or bone marrow transplantation, and can be curable, depending on the histology, type, and stage of the disease.&#8221;</p>
<p>However, I sort of take that as good news as compared to Monday when they told him he had lung cancer.  Apparently, the prognosis is better for lymphoma than lung cancer.  He certainly seemed in much better spirits when he called and told me the updated news yesterday.</p>
<p>I don&#8217;t really know about lymphoma, or the lymph nodes for that matter, but I&#8217;m starting to read.  It is interesting to think about the lymph nodes having to do with the immune system as he was not very long ago battling some very nasty cases of bronchitis and pneumonia.<br />
<span id="more-2873"></span><br />
2.  I got called to go take some tests for a job I applied for and I am totally excited.  However, don&#8217;t expect to hear much more about it short of I got it or didn&#8217;t get it because I&#8217;m not going to be one of those people who talks about their jobs online and subsequently gets fired for it.  :P</p>
<p>3.  Kayleigh is eating all sorts of baby food and cereal now.  In fact, I&#8217;m feeding her now.  Sometimes she&#8217;s really slow because she&#8217;s gotta stick those fingers in her mouth between bites.  But she really likes it.  I think the only thing she might possibly not enjoy is squash, she seems to like everything else pretty well.  She really packs it in there, too.  We thicken it up with the baby cereal sometimes nearly doubling the volume and she will eat the whole thing every time, sometimes washing it down with a bottle.  Yet she&#8217;s really slowed on her weight gain.  I think it&#8217;s because she is just so active, she must be burning up all the calories!</p>
<p>4.  She&#8217;s also still not sitting up yet but is very close to crawling.  So we got her started with some once-a-month physical therapy.  She&#8217;s practicing sitting right now, in her little seat.  We&#8217;re also supposed to push her knees together more when she&#8217;s on her hands and knees as she tends to really send them flying out to the sides.</p>
<p>5.  Kidney ultrasound is next week, hopefully then we&#8217;ll know if this girl is going to need surgery or not.  Thankfully, we still have health insurance for approximately through 2010 even if Steve is not called back to work.</p>
<p>6.  Last night Steve started working on the lower room.  He&#8217;s taking it in chunks and has already ripped out the paneling on one of the short walls and added more insulation and drywall, not to mention fixing the shoddy electrical work that was inside the wall that we never knew about.  He about had a fit when he saw it, said it was a fire waiting to happen.  Apparently someone at some point (not us) also barely missed sending a nail into a live wire and instead was pushing the junction box out from the wall.  But now drywall is up, the electrical is fixed, and we even have a new outlet.  He also put in a switch to use with the old-looking light that&#8217;s outside that&#8217;s never worked.  He&#8217;s working on fixing that up.  </p>
<p>7.  Yes, remodeling is expensive.  It&#8217;s not really fair if you ask me.  Either he has no time or he has no money.  Never can he apparently have time AND money.  But it&#8217;s also good that we have a lot of things we&#8217;ve accumulated over the years that can be used for this.  He did have to buy drywall, but it was not bad at all.</p>
<p>8.  That room has become, it seems, our junk room though, since we tore the wall out of the other one and made the living room bigger and finished that.  We have books down there and half of my candle supplies, shipping boxes, packing peanuts, the desk, a few other misc things, a tub of E&#8217;s bigger toys, and a piano.  I am sad about the piano.  I&#8217;ve decided there is no room for it and I never get to play so I was prepared to give it up.  But I don&#8217;t want to!  And I was talking to a friend about giving it to her to the point where she was going to talk her her husband &#8211; they already  have one but it is in bad shape &#8211; but then my mom is trying to talk me into keeping it and so I start second thinking it.  I don&#8217;t want to go back on what I told my friend but she also hasn&#8217;t talked to her husband yet and we were thinking that maybe we could fix hers and get rid of the horrible one out at my in-laws&#8217; and put ours there for the time being.  I dunno what to do but it just can&#8217;t stay here&#8230;</p>
<p>9.  Eight is enough.  :)</p>
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		<item>
		<title>follow-up</title>
		<link>http://spoken-for.org/archives/2010/02/04/2868/</link>
		<comments>http://spoken-for.org/archives/2010/02/04/2868/#comments</comments>
		<pubDate>Fri, 05 Feb 2010 05:53:19 +0000</pubDate>
		<dc:creator>Val</dc:creator>
				<category><![CDATA[Days Go By]]></category>
		<category><![CDATA[doctor]]></category>
		<category><![CDATA[nicu followup]]></category>
		<category><![CDATA[thing 2]]></category>

		<guid isPermaLink="false">http://spoken-for.org/?p=2868</guid>
		<description><![CDATA[Today K had a NICU follow-up appointment at the child development center.  She saw a nurse practitioner, physical therapist, occupational therapist, and a doctor.  Overall, every one of them is happy with where she is at.  They gave me a few pointers on some things to do with her to strengthen some [...]]]></description>
			<content:encoded><![CDATA[<p>Today K had a NICU follow-up appointment at the child development center.  She saw a nurse practitioner, physical therapist, occupational therapist, and a doctor.  Overall, every one of them is happy with where she is at.  They gave me a few pointers on some things to do with her to strengthen some muscles and they expressed concern over her eyes and a way she turns her head to the left (or right) and then uses her peripheral vision of the other side to look at something.  She sees a neurologist next month though, in part for the eye issue.  The occupational therapist thought that maybe K&#8217;s looking at things like that was her way of stopping her eyes from moving around, to get a fix on what she sees.  She also has the next kidney ultrasound coming up soon.  And I am so tired&#8230;</p>
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		<item>
		<title>bedtime woes</title>
		<link>http://spoken-for.org/archives/2010/01/27/2865/</link>
		<comments>http://spoken-for.org/archives/2010/01/27/2865/#comments</comments>
		<pubDate>Wed, 27 Jan 2010 06:45:48 +0000</pubDate>
		<dc:creator>Val</dc:creator>
				<category><![CDATA[Days Go By]]></category>
		<category><![CDATA[bedtime]]></category>
		<category><![CDATA[food]]></category>
		<category><![CDATA[frustrating]]></category>
		<category><![CDATA[thing 1]]></category>

		<guid isPermaLink="false">http://spoken-for.org/?p=2865</guid>
		<description><![CDATA[Bleh, it&#8217;s frustrating and it never fails.  Tonight, for example.  I warned the E-boy:
&#8220;Bedtime in one hour.&#8221;
&#8220;Bedtime in half an hour.&#8221;
&#8220;Bedtime in fifteen minutes.&#8221;
&#8220;Ok, brush your teeth, go to the bathroom, wash your hands, get your jammies on, and go to bed.&#8221;
A lot of instructions, I know, but he&#8217;s really got that bedtime [...]]]></description>
			<content:encoded><![CDATA[<p>Bleh, it&#8217;s frustrating and it never fails.  Tonight, for example.  I warned the E-boy:</p>
<p>&#8220;Bedtime in one hour.&#8221;</p>
<p>&#8220;Bedtime in half an hour.&#8221;</p>
<p>&#8220;Bedtime in fifteen minutes.&#8221;</p>
<p>&#8220;Ok, brush your teeth, go to the bathroom, wash your hands, get your jammies on, and go to bed.&#8221;</p>
<p>A lot of instructions, I know, but he&#8217;s really got that bedtime routine down pat.  The problem starts about 15 minutes after he&#8217;s been in bed.</p>
<p>&#8220;I&#8217;m hungry.&#8221;</p>
<p>&#8220;Hello?  Mommy?  I&#8217;m hungry!!&#8221;</p>
<p>&#8220;You&#8217;ve been sent to bed.  Good-night.&#8221;</p>
<p>&#8220;But I&#8217;m hungry!  I didn&#8217;t have dinner.&#8221;</p>
<p>He totally had dinner, whether he wants to admit it or not.  Sometimes he gets a snack (contrary to what my size may show you, we don&#8217;t usually have dessert here).  But he always has plenty of time before bed to tell me he&#8217;s hungry.  There are times I&#8217;ve even asked him if he was hungry, gotten a &#8220;no&#8221; answer, sent him to bed, then *suddenly* he&#8217;s &#8220;hungry.&#8221;  Most of the time I think it&#8217;s just a ploy to stay up later but I feel guilty thinking that I don&#8217;t want to deny a growing boy some food.</p>
<p>But this behavior has got to stop.  Tonight I told him, &#8220;ok, you can eat your dinner left-overs but then to bed and this is NOT going to happen anymore.  You have plenty of time to decide if you&#8217;re hungry or not and you will NOT be getting out of bed like this anymore.&#8221;  We&#8217;ll see how it goes.</p>
<p>The thing that really grinds my gears, though, besides when he&#8217;s been offered food just 10 minutes prior, is that he throws an absolute fit about finishing dinner left-overs.  I have been in his face about not wasting food but he just doesn&#8217;t seem to get it.  Of course, I win there, because I say &#8220;it&#8217;s that or nothing, we&#8217;re not wasting it,&#8221; but it still frustrates.</p>
<p>This has been a rant, good-night.  :)</p>
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		<item>
		<title>reflections</title>
		<link>http://spoken-for.org/archives/2010/01/25/2858/</link>
		<comments>http://spoken-for.org/archives/2010/01/25/2858/#comments</comments>
		<pubDate>Tue, 26 Jan 2010 05:09:20 +0000</pubDate>
		<dc:creator>Val</dc:creator>
				<category><![CDATA[Days Go By]]></category>
		<category><![CDATA[nicu]]></category>
		<category><![CDATA[photos]]></category>
		<category><![CDATA[reflections]]></category>
		<category><![CDATA[thing 2]]></category>

		<guid isPermaLink="false">http://spoken-for.org/?p=2858</guid>
		<description><![CDATA[A friend who has a special needs daughter told me quite some time ago that it&#8217;s a good idea to keep all a kid&#8217;s info and medical history, etc., in a notebook so you can easily find everything and all the important info for the doctors.  I tried it in September but didn&#8217;t get [...]]]></description>
			<content:encoded><![CDATA[<p>A friend who has a special needs daughter told me quite some time ago that it&#8217;s a good idea to keep all a kid&#8217;s info and medical history, etc., in a notebook so you can easily find everything and all the important info for the doctors.  I tried it in September but didn&#8217;t get far.  I realized last week, though, that I am already getting fuzzy about dates.  The last time I was asked when K was removed from oxygen completely and then when she had the last ultrasound of her brain&#8230; my mind failed me.  So tonight I&#8217;ve sat for the last hour and a half, going through my old entries here and even photos to see when this or that happened and to get it into a notebook.  Because, apparently, just as I think things might really be coming to an end, that this story might be written for the most part, I&#8217;m told I need to start getting her some physical therapy and that she&#8217;ll need to see a neurologist in March.</p>
<p>It&#8217;s really been a ride to go through these entries, not even a year later yet.  It&#8217;s amazing how fast time has flown.  Where did it all go?  I can&#8217;t believe 2009 went so fast.  And really, my heart melts when I look at those pictures of K from April and May&#8230; how did I get so lucky that she would go from this:</p>
<p><a href="http://www.flickr.com/photos/anela/3433018403/" title="Without the eye patches by anela, on Flickr"><img src="http://farm4.static.flickr.com/3571/3433018403_cff0468929.jpg" width="300" alt="Without the eye patches" /></a></p>
<p>To this:</p>
<p><img src="http://spoken-for.org/wp-content/uploads/2010/01/DSC_2622-300x201.jpg" alt="" title="DSC_2622" width="300" height="201" class="alignnone size-medium wp-image-2859" /></p>
<p>In only a few short months?</p>
<p>But, again, apparently the war isn&#8217;t over yet.  We&#8217;ll see next month (hopefully) if she needs kidney surgery and in March, hopefully the neurologist will tell us she&#8217;s just fine.  We shall see what we shall see&#8230;  But in the meantime, I&#8217;m not worried, I know things will be fine.</p>
<p>Though, I also wish I posted here more.  Obviously, there are times I need those entries to remind me of things.  :P</p>
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