tag:blogger.com,1999:blog-8139487447432434152024-03-13T05:45:26.240-07:00Enjoy The JourneyJeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comBlogger164125tag:blogger.com,1999:blog-813948744743243415.post-3671469590127218852018-06-23T11:06:00.002-07:002018-06-24T11:41:48.391-07:00eye took these photos <br />
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Yes, the post title is cheesy.<br />
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But, I really did take the photos with my eyes using the tobii dynavox I-12+.<br />
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Woohoo!<br />
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The camera quality is not as good as I hoped. It probably is the equivalent of a really old flip phone. Although considering how long it's been since I've taken any pictures, I'll take it and be happy.<br />
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(Unfortunately the tobii does not work outside because the sun interferes with how the eye tracking works. The device can only track my eyes indoors, or shady areas.)<br />
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Claire. </div>
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Megan's picture was outside in a shaded area. </div>
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The colors came out weird so I used a filter to even things out. </div>
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Erik is notoriously tricky to get pictures of, but the rear facing camera worked just fine. </div>
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<br />Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-56355240905049232282018-02-23T10:15:00.000-08:002018-02-23T15:06:44.576-08:00always room for peace I'm in a good place but there is always room for more peace.<br />
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This week these words were comfort food for my soul. </div>
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Where Can I Turn for Peace <o:p></o:p></div>
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Where can I turn for peace?<o:p></o:p></div>
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Where is my solace<o:p></o:p></div>
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When other sources cease to make me whole?<o:p></o:p></div>
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When with a wounded heart, anger, or malice,<o:p></o:p></div>
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I draw myself apart,<o:p></o:p></div>
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Searching my soul?<o:p></o:p></div>
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Where, when my aching grows,<o:p></o:p></div>
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Where, when I languish,<o:p></o:p></div>
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Where, in my need to know, where can I run?<o:p></o:p></div>
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Where is the quiet hand to calm my anguish?<o:p></o:p></div>
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Who, who can understand?<o:p></o:p></div>
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He, only One.<o:p></o:p></div>
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He answers privately,<o:p></o:p></div>
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Reaches my reaching<o:p></o:p></div>
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In my Gethsemane, Savior and Friend.<o:p></o:p></div>
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Gentle the peace he finds for my beseeching.<o:p></o:p></div>
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Constant he is and kind,<o:p></o:p></div>
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Love without end.<o:p></o:p></div>
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Emma Lou Thayne/ Joleen G. Meredith <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<br />Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-137961524057633712018-01-26T13:13:00.001-08:002018-01-27T17:26:35.836-08:00typical morning routine <div class="MsoNormal">
My day starts early…around 1:30ish.</div>
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I wake up because either my bipap has slipped and is blasting me in the face, or my legs start hurting. If it is the bipap, then Jeff wakes up to take it off or reposition the mask. If it is the legs, I’ll shift positions and
then fall asleep. From there I wake up multiple times. It has been years since I've slept through the night. Same probably goes for Jeff. </div>
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Sometimes
I get up when his alarm goes off at 5:15am, so I can type. Often, I stay in bed until 7:00am, that way I can snuggle with my sleepy eyed children for a
few minutes when they roll down stairs. When it is time, Jeff sits me up, puts my hair in a ponytail, and then carefully... slowly... helps me walk to
the toilet. From there, he helps me to
the wheelchair, puts slippers on my feet and a blanket on my lap. </div>
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For breakfast I usually have a can of the tube food because it is easy to pour it in, top it off with some water and just
be done. Other times I might have a few
bites of oatmeal, scrambled egg or something soft and easy to eat.</div>
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The CNA arrives. She helps me shower and get dressed etc. That takes around 60 minutes. A friend will come to do my hair
and visit. There are
four different friends that will come one morning a week with other friends periodically subbing for them. The other days the CNA will help. This group of friends has been helping me with hair for 7 or 8 years! Who does that? </div>
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It is ridiculous how high maintenance I've become.<br />
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Jeff. Being a caregiver is exhausting. ALS is just as hard on him as it is on me, obviously in different ways, but he does everything he can for our family. Very few people realize all that does. He is my sweetheart. <br />
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I used the word, Sweetheart, to describe Jeff, but the term
we use more often is </div>
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<b><span style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">ցաւդ տանեմ</span></b><o:p></o:p></div>
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The pronunciation is
(ˈtsʰɑvət tɑnɛm) or (cʿavd tanem). This is an Armenian expression
of endearment similar to Sweetheart.<i><span style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;"> </span></i>Its literal meaning is, <i>"I would take away your pain.”</i><o:p></o:p></div>
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(Jeff was a missionary for The Church of Jesus Christ of Latter
Day Saints from 1995-1997 and served in Russia and Armenia. It was in Armenia where he learned <b>ցաւդ տանեմ.) </b></div>
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<o:p></o:p></div>
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-323177736133167572018-01-20T14:27:00.001-08:002018-01-20T14:27:45.803-08:00arms like Vin Diesel's <div class="MsoNoSpacing">
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<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">We were playing the game, What’s Yours Like,
where one person is trying to guess a word from rather vague clues that everybody
else is giving.<o:p></o:p></span></div>
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<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">In one round as we go around the circle
people are saying things such as:<o:p></o:p></span></div>
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<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">“Mine are brown.” <o:p></o:p></span></div>
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<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">“I’ve had mine since I was born.” <o:p></o:p></span></div>
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<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">“Mine are always with me.” <o:p></o:p></span></div>
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<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Then it is Jeff’s turn. And with a straight face he says, “Mine are
like Vin Diesel’s.” <o:p></o:p></span></div>
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<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Everyone laughs and the person correctly
guesses the word, “arms.” <o:p></o:p></span></div>
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<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">If you make a claim like that you had better
be ready to own it. </span></div>
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<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">With the help of Laurie, Aubrey and their
families images of Vin Diesel started showing up EVERYWHERE. In Jeff’s truck, behind the milk, on family
pictures, in the cereal box, in plants and on the ceiling fan. He has found around 50, but there are a few
more in hiding. <o:p></o:p></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-4DmjHUTflQ4/WmPAN-UPb5I/AAAAAAAABZQ/y3rZR6L7_lkhwU6EL9dN8dpFINDmGt01ACLcBGAs/s1600/0115181041.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://1.bp.blogspot.com/-4DmjHUTflQ4/WmPAN-UPb5I/AAAAAAAABZQ/y3rZR6L7_lkhwU6EL9dN8dpFINDmGt01ACLcBGAs/s400/0115181041.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">2004 Mazatlan, Erik, baby Claire and ummm... Jeff (?) </span></td></tr>
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-88687112392963475272017-12-20T11:38:00.002-08:002017-12-20T11:38:56.556-08:00Merry Christmas <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-oH3_hgena0o/WjqgZnez8BI/AAAAAAAABY8/XD7Dt74q-WAjVavQgOMNlYaru53zv43AACLcBGAs/s1600/erik_claire_megan.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1069" data-original-width="1600" height="266" src="https://3.bp.blogspot.com/-oH3_hgena0o/WjqgZnez8BI/AAAAAAAABY8/XD7Dt74q-WAjVavQgOMNlYaru53zv43AACLcBGAs/s400/erik_claire_megan.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"> (December2007)</span></td></tr>
</tbody></table>
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There is so much to be grateful for. </div>
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Knowing we are children of God... </div>
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Knowing that God has a plan for us... </div>
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Knowing we came to earth with a purpose in life... </div>
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I'm grateful for the birth of a little baby boy over two millennia ago who would become our Savior. Jesus still is, and will always be, The Living Christ. </div>
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Wishing you Love, Peace and Joy. </div>
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<br />Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-433468965581147662017-12-01T10:59:00.000-08:002017-12-04T10:16:13.850-08:00art class<br />
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This past year we had the opportunity to paint with two of
our favorite artists. </div>
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<o:p></o:p></div>
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I have a tremendous amount of respect for these women as
artists, and I love them as friends. <o:p></o:p></div>
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To watch them teach my daughters made my heart so happy. <o:p></o:p></div>
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<a href="https://www.heathertycksen.com/">https://www.heathertycksen.com/</a><o:p></o:p></div>
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<a href="http://jordan-daines.com/">http://jordan-daines.com/</a><o:p></o:p></div>
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<o:p><br /></o:p></div>
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I only have photos of painting with Jordan. </div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Claire followed one of Jordan's "color studies" </span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><br /><br />I found a simple program online where I could sketch with my eyes.... One click at a time.<br />This is the first tree I've drawn in years. <br /></span></td></tr>
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-85470716840708383312017-07-31T05:55:00.002-07:002017-08-04T06:58:28.797-07:00yes erik, no mom mom<div class="MsoNormal">
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What do you think of the note Erik made for me when he was
four? I can't recall the circumstances
but HE WAS MAD. What I do remember is a
little brown-eyed-boy marching out of his bedroom and presenting me with this
note. I kept it as a reminder that I’m
not always right and to listen to what he has to say. <o:p></o:p></div>
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I have a question. <o:p></o:p></div>
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Q: Did ANYONE ever
sit down and tell you how hard parenting would be? <o:p></o:p></div>
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<i>(Someone in the
background shouts out, “That, my friend, is a dumb question!” in reference to
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Touché! I deserved
that. <o:p></o:p></div>
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But seriously, NO ONE ever told me how difficult it would
be. <o:p></o:p></div>
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Each phase has its set of challenges. I want to parent consistently, except what
works with Claire doesn’t always work with Megan and the same goes for
Erik. I want them to learn from my
mistakes, but I know that with their personalities, many things they will have
to learn in their own way. <o:p></o:p></div>
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So I try to tell them I love them often. Because, while I may not like how they might
be acting at the moment, I do love them no matter what. It’s a forever type of love. <o:p></o:p></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt;">Here's to all you parents out there! </span><br />
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt;"><br /></span>Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-82770647190414945542017-07-20T16:06:00.000-07:002017-07-21T09:17:54.320-07:00als - voice banking<div>
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I am sitting here wondering, "Why didn't I EVER RECORD MY VOICE!"<br />
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That certainly was dumb of me. There were about two or three years post diagnosis where I COULD HAVE HAD clear recordings of words and phrases to be used later for AAC (augmentative and alternative communication). But I didn't. </div>
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Time for some Q & A... </div>
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Q: Why didn't you? </div>
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A: That is a great question. </div>
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Sigh. Honestly, probably because I was terrified of the disease. I wanted to fight it, and in my mind, voice banking was admitting I couldn't stop what was happening. And then I figured I could always do it "later." So foolish.<br />
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Q: Do you regret it? </div>
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A: And THAT, my friend, is a dumb question. </div>
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I will refer you back to the second sentence of this post. Of course I regret it and now there are the consequences from my lack-of-foresight decision. Despite all the capitalization of words, I am not angry, more of that wistful feeling of wishing I could go back in time. Since that can't happen I'll move on. </div>
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The purpose of this post is to say that someday if you are diagnosed with als, don't put it off, record that beautiful voice of yours! </div>
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Actually, you never know what will happen to you, so why not record something today. Record a few phrases, or a story, or you reading your kids favorite story OR singing a lullaby. <br />
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<i>*Addition* </i><br />
<i>I woke up thinking what I wrote yesterday, in particular, the comment about "a dumb question". I take that back. Ask away. </i></div>
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-4537360174533961182017-07-14T15:10:00.001-07:002017-07-14T17:50:44.287-07:00sunrises, cameras and the Tobii Dynavox I-12<div class="separator" style="clear: both; text-align: center;">
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About once a week in the summer I will watch the sunrise. I like to go outside in the early morning, when the sky is still grey, to see the sky transition through all the colors leading up to that moment when the sun comes out. It is so peaceful. </div>
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This particular morning my parents were over, so my Dad came out with me and took a few pictures. </div>
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I really miss holding a camera and taking pictures. Back when 35mm film was popular, I had my 24 chances to get the perfect picture. I would drop off the roll of film to be developed. And wait. There was always that anticipation when picking up the envelope to see how the prints turned out. </div>
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While I love photography, even more so I love being able to communicate. In the past I mentioned that my voice is rubbish. Well I was practically a nightingale back then compared to how I sound now! </div>
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Recently Jeff and I have been meeting with a Speech Therapist and different reps for portable speech generating devices because my voice is at it's end. I felt a bit anxious meeting with the different people until one of them mentioned how the device has two cameras. What was that? It has a 5 mp front facing camera and a 2 mp rear facing camera. </div>
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Obviously the primary need is to have a voice (any voice will do) and to communicate clearly. But, to take pictures with my eyes would be awesome too. </div>
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Currently I am looking into the Tobii Dynavox I-12. It would attach directly to my wheelchair. </div>
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<br />Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-61131892028795134462017-05-05T10:31:00.000-07:002017-05-05T10:31:30.043-07:00don't forget to check the dryer<div class="MsoNormal">
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Last week we sold our clothes dryer on the classifieds. About an hour after the buyer picked it up he
messaged Jeff asking, “Did you know there are clothes in the dryer?” <o:p></o:p></div>
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That would be a “Negative.” <o:p></o:p></div>
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When Jeff relayed this conversation at dinner, Erik got a
funny look on his face and said, “Those are MY clothes!”<o:p></o:p></div>
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The rest of the family burst into laughter which Erik did
not find funny at all. <o:p></o:p></div>
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The <i>funny </i>thing
(there’s that word again) is that the past two or three days Erik had been
saying he couldn’t find some clothes he wanted to wear. Whenever he brought it up I suggested he look
under his bed, or in the pile of stuff on the floor in his closet or in the
hamper. <o:p></o:p></div>
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Turns out that they were just in the dryer all clean and fluffy.
<o:p></o:p></div>
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This week Erik decided to do his own laundry by
himself. No more runaway clothes. <o:p></o:p></div>
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<tr><td class="tr-caption" style="text-align: center;">Hike they went on in April near Escalante. </td></tr>
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-27574133045549129972017-05-02T11:57:00.000-07:002017-05-02T12:23:43.203-07:00Rodrigo y Gabriela<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/8UPHFjHvGvY" width="480"></iframe><br />
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Have you ever listened to the guitar duo, Rodrigo y Gabriela?<o:p></o:p></div>
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The first time I ever listened to them the music was like nothing I’d ever heard and it blew me away. <o:p></o:p></div>
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Rodrigo y Gabriela are touring the U.S. later in May and early June, and for some UNFORTUNATE reason they are NOT coming to Salt Lake City. <o:p></o:p></div>
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If you are lucky enough to live near one cities where they will be performing will you go for me?<o:p></o:p></div>
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<span style="font-family: "times new roman" , serif; font-size: 12pt;">Here is a performance from a TED Talk. </span>Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-32507798293282386692017-04-10T09:51:00.000-07:002017-04-10T09:51:23.076-07:00another memory saved<div class="separator" style="clear: both; text-align: center;">
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This picture is from last fall when Erik ran cross-country. Now he is in track. <br />
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I love going to the meets and watching and cheering for all the kids. <br />
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I love that most of them are there trying to improve their own PR.<br />
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And...<br />
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I love those stinky post race hugs.<br />
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<br />Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-92144936475359129802017-04-07T06:04:00.000-07:002017-04-07T06:04:16.867-07:00save a memory, take a picture <br />
So many memories I don't want to forget, and taking a picture is one way to keep them alive. <br />
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<a href="https://4.bp.blogspot.com/-ZdbYggNdZdI/WOeMNDQUs3I/AAAAAAAABWo/KXMeRsUWlOMflk5P3KgfOVcX0HK-60J4wCLcB/s1600/IMG_3728.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://4.bp.blogspot.com/-ZdbYggNdZdI/WOeMNDQUs3I/AAAAAAAABWo/KXMeRsUWlOMflk5P3KgfOVcX0HK-60J4wCLcB/s400/IMG_3728.JPG" width="400" /></a></div>
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I am grateful to Claire for having her ipod handy to snap these pictures of "Girls Night". We had just finished watching a tween movie and decided to have a hula-hoop contest. Megan put on some music and we all took turns.<br />
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Claire can get the hula-hoop from her waist, to her neck, and back to her waist without dropping it.<br />
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For me, they put the hula-hoop around my waist and I turned my wheelchair around in circles.<br />
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Megan hula-hooped to "Car Radio" by 21 Pilots. It cracked me up to watch her hula-hoop to the entire song and half of the next, while singing, like it was a perfectly normal thing to do. <br />
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<br />Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-72927074666321170072017-03-25T10:36:00.001-07:002017-03-25T10:36:28.004-07:00good morning <br />
Email that I sent to my friend, NeYoda. <br />
It is a nickname given to her (by Dawn) because she is wise, like Yoda.<br />
<br />
<br />
<br />
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<i>Good morning
NeYoda, <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>It looks like
spring. It smells like spring. It feels
like spring. Finally! <o:p></o:p></i></div>
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<br /></div>
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<i>For me this time of
year feels more spiritual... I will sit outside with my eyes closed and there
is an energy, that is almost tangible, as everything that was dormant starts to wake up and grow again. And I don't mean any of
that in some weird hippie way. I just
love this time of year. <o:p></o:p></i></div>
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<i>So Megan. <o:p></o:p></i></div>
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<i>I looked at Megan a
couple of weeks ago and there was something different about her. Her eyebrows were half gone! What The Heck!? Turns Megan had tried to shape her eyebrows
with a razor. It didn't look so good. Oh, she also cut her long eyelashes back
by half. Why? I am still not entirely sure. The best answer might be, "Because she's
Megan."<o:p></o:p></i></div>
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<i>Sending love, <o:p></o:p></i></div>
<div class="MsoNormal">
<i>Janae :)<o:p></o:p></i></div>
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<o:p> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-iy9Rk4-aDJo/WNaoBpFIHbI/AAAAAAAABWQ/0kUnUMLw4YEvQqlKnquTsR-F4Vs4tJj6gCLcB/s1600/DSC_8356.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://2.bp.blogspot.com/-iy9Rk4-aDJo/WNaoBpFIHbI/AAAAAAAABWQ/0kUnUMLw4YEvQqlKnquTsR-F4Vs4tJj6gCLcB/s400/DSC_8356.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">NeYoda and Megan back in 2012.</td></tr>
</tbody></table>
</o:p></div>
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-9478548724693758982017-02-04T09:33:00.000-08:002017-02-04T09:33:06.300-08:00"First and foremost, you are a child of God." <div class="MsoNormal">
<i><span style="font-size: large;"><br /></span></i></div>
<div class="MsoNormal">
<i><span style="font-size: large;">“First and foremost, you are a child of God.” - <o:p></o:p></span><span style="text-indent: -24px;">Elder F. Enzio Busche</span></i></div>
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<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal; line-height: normal;"> </span><o:p></o:p></div>
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Here is a short 6 minute clip. The words bring peace and hope and love. <br />
<!--[endif]--><o:p></o:p></div>
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Thank you Heather for sending this to me. </div>
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<a href="https://youtu.be/snAjZ8mfoYw">https://youtu.be/snAjZ8mfoYw</a></div>
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-40872297149098826302017-02-02T12:00:00.002-08:002017-02-03T09:58:44.190-08:00Why Not? <div class="MsoNormal">
<br /></div>
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Hello February! <o:p></o:p></div>
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So far February looks VERY similar to January, but I am okay
with that.<o:p></o:p></div>
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<o:p><br /></o:p></div>
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<o:p><br /></o:p></div>
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Jeff and I and our kids sometimes talk about, “Why Not?” <o:p></o:p></div>
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<br /></div>
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<i>(I think this idea
originated with our friends, John Matthew and Megan.)<o:p></o:p></i></div>
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<i><br /></i></div>
<div class="MsoNormal">
This is how it goes:
Everyone takes a turn saying something that they might want to do by
phrasing it with a “Why Not.” The only
rule is that NO ONE can tell you why you CAN’T do it or why your idea is
impossible or ridiculous etc. <o:p></o:p></div>
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<br /></div>
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It is fun to think big, or think differently, or to think
your ideas out loud and just <i>maybe </i>put
them into motion. <o:p></o:p></div>
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<br /></div>
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Recently my sister’s family was over and here some of the “Why
Not’s” we came up with. <o:p></o:p></div>
<div class="MsoNormal">
<i>(I will say that this
game can be more fun to play with kids than adults.) <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
<b>“Why Not”… <o:p></o:p></b></div>
<br />
<div class="MsoNormal">
<i>(Remember the
rule. You CANNOT tell the other people
why their idea won’t work.) <o:p></o:p></i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
Jump out of an exploding spaceship while shooting a rocket
launcher in space. <o:p></o:p></div>
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Own 5 billion dollars. <o:p></o:p></div>
<div class="MsoNormal">
Eat steak every day.<o:p></o:p></div>
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Own an elephant.<o:p></o:p></div>
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Get a job as a billboard.<o:p></o:p></div>
<div class="MsoNormal">
Become a pigeon whisperer.<o:p></o:p></div>
<div class="MsoNormal">
Fly an A10 jet.<o:p></o:p></div>
<div class="MsoNormal">
Get a flame thrower.<o:p></o:p></div>
<div class="MsoNormal">
Actually manage New Year's resolutions.<o:p></o:p></div>
<div class="MsoNormal">
Get a dog.<o:p></o:p></div>
<div class="MsoNormal">
Find a cure for death.<o:p></o:p></div>
<div class="MsoNormal">
Become a plant.</div>
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Eat all the Twinkies in America.<o:p></o:p></div>
<div class="MsoNormal">
Stay up past 9:30.<o:p></o:p></div>
<div class="MsoNormal">
Beat Erik in ping pong.<o:p></o:p></div>
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Analyze each line of the Divine Comedy.<o:p></o:p></div>
<div class="MsoNormal">
Major in Philosophy.<o:p></o:p></div>
<div class="MsoNormal">
Visit Western Europe.<o:p></o:p></div>
<div class="MsoNormal">
Read more.<o:p></o:p></div>
<div class="MsoNormal">
Get a cat. <o:p></o:p></div>
<div class="MsoNormal">
Get a dragon. <o:p></o:p></div>
<div class="MsoNormal">
Get a CAT-DRAGON. <o:p></o:p></div>
<div class="MsoNormal">
Save up for a trampoline. <o:p></o:p></div>
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Travel to South America. <o:p></o:p></div>
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Get a Bugatti. <o:p></o:p></div>
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Go to the beach. <o:p></o:p></div>
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Go to the Farallon Islands to see a great white shark. <o:p></o:p></div>
<div class="MsoNormal">
Eat a whole container of Ben & Jerry’s by myself in one
sitting. <o:p></o:p></div>
<div class="MsoNormal">
Organize a comedy night. <o:p></o:p></div>
<div class="MsoNormal">
Go to the Festival of Colors at the Hindu temple in Spanish
Fork. <o:p></o:p></div>
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Plant more flowers in the green space. <o:p></o:p></div>
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Drive the coast from Mexico to Canada. <o:p></o:p></div>
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<br /></div>
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<span style="font-family: "times new roman" , serif; font-size: 12.0pt;">Some of the “Why Not” participants. </span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-JHZAxu0t1Wo/WJOOwG11u1I/AAAAAAAABVM/D8p-Ti8rIeInqyizon1Fo2Q5MnA0tkl_gCLcB/s1600/2A53E7F0-580C-4519-A602-5BFB1BA9A332.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://1.bp.blogspot.com/-JHZAxu0t1Wo/WJOOwG11u1I/AAAAAAAABVM/D8p-Ti8rIeInqyizon1Fo2Q5MnA0tkl_gCLcB/s640/2A53E7F0-580C-4519-A602-5BFB1BA9A332.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cousins! </td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 12.0pt;"><br /></span></div>
Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-75809858988780488152017-01-07T11:04:00.000-08:002017-01-07T11:04:07.707-08:00for the love <div class="MsoNormal">
<i>Background:<o:p></o:p></i></div>
<div class="MsoNormal">
<i>Festival of Trees is a
fundraiser for Primary Children’s Hospital.
It is an event where people decorate and donate a Christmas tree, which
the Festival sells, and all of the money goes to Primary Children’s
Hospital. People donate beautiful
quilts, wreaths, centerpieces and gingerbread houses which are also sold. The event takes place the Monday-Saturday after
Thanksgiving. <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This year we donated a tree. We named our tree “For the Love”.
That phrase can be a cheeky expression,
BUT this time it represented all the love and effort that went into it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I use the word “we”, there is a whole lot of “WE” that
went into making the tree happen. Friends and family that contributed their
talents or donated in one way or another include: Jenn J., Laura, Heather, Andrea, Shelby, Liz,
Kindra, Deb, Lynette, Whittney, Jenn, Amy, Dawn, Laurie, Teri, Martin, Louise,
Jeff, Claire, Megan, Erik, Kristen, Heidi, Linda, Merilyn, LaKay, Terrie,
Cindy, Dave & Dawn. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There were quite a few handmade elements. Felt embroidered ornaments, jute wrapped
balls, moss sticks, hand felted wool fairies and blue eggs, the tree skirt, to the dogwood branch
star that my Dad made. We created a display with tree stumps, lanterns, a toboggan and a gift basket themed after the book, "The Mitten," by Jan Brett. </div>
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Oh let me just show you :) <o:p></o:p></div>
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<tr><td class="tr-caption" style="text-align: center;">The flame in the candle looks real, but it isn't. </td></tr>
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I will be honest. That Monday after Thanksgiving when we
finally set up the tree… I never wanted to see another tree in my life. Never.
Well two days later I found myself thinking, “Hmm, if we did a tree next
year what would it look like?” <o:p></o:p></div>
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-83144263911482934872016-12-31T12:59:00.000-08:002016-12-31T12:59:27.242-08:00December 31, 2016<div class="MsoNormal">
In early December I went to a funeral. At the end after most people had left a
woman approached Jeff and I. She
introduced herself and was already aware that I had als. This woman told us us about a loved one of
hers that was diagnosed just over a year ago.
She said how with her loved one, the disease is progressing quickly and
he is already in a wheelchair. She went
on to tell me I looked like I was doing well, and added "I hope that we
get as much time as you. (pause) Why do
some people get more time than others?" <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I glanced at Jeff, not quite sure how to respond, but if
anything, her comment seemed to be rhetoric.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
We certainly didn’t have an answer to her question. <o:p></o:p></div>
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<br /></div>
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Goal for today: Be Present.
<o:p></o:p></div>
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Some photos from 2016…<o:p></o:p></div>
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-69959209537313445652016-09-07T10:55:00.000-07:002016-09-10T11:17:12.354-07:00I see beauty in all of my friends <br />
<br />
<br />
Megan has a t-shirt that says:<br />
<br />
<br />
<span style="font-size: large;">"I see beauty in all of my friends"</span><br />
<br />
<br />
Is it weird that I'm about to post pictures of plants and instead of people?<br />
<br />
Shelby, a fellow plant lover would say, "Of course not."<br />
<br />
<br />
<br />
<br />
<br />
'Friends' (Thank you Dad for taking these photos) <br />
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Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-31500492105253516712016-08-19T11:21:00.001-07:002016-08-19T15:48:51.427-07:00just some thoughts (and a picture) An email from a cousin:<br />
<br />
<div class="MsoNormal" style="margin-left: 3.0pt;">
<i>Hey Janae! I am doing a blog post on ways to support, love, serve those who have
chronic health problems. I know for a lot of people this is really difficult,
and many are not sure what to say or do. They don't want to say the wrong thing
but they care. <o:p></o:p></i></div>
<br />
I emailed her back with:<br />
<br />
<div class="MsoNormal" style="margin-left: 3.0pt;">
Some ways family and friends have
helped us:<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 21.0pt; mso-list: l0 level1 lfo1; tab-stops: list 21.0pt; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal;">
</span><!--[endif]-->Countless meals (including freezer meals) <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 21.0pt; mso-list: l0 level1 lfo1; tab-stops: list 21.0pt; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal;">
</span><!--[endif]-->Grocery shopping<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 21.0pt; mso-list: l0 level1 lfo1; tab-stops: list 21.0pt; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal;">
</span><!--[endif]-->Laundry<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 21.0pt; mso-list: l0 level1 lfo1; tab-stops: list 21.0pt; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal;">
</span><!--[endif]-->Carpools<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 21.0pt; mso-list: l0 level1 lfo1; tab-stops: list 21.0pt; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal;">
</span><!--[endif]-->Visits<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 21.0pt; mso-list: l0 level1 lfo1; tab-stops: list 21.0pt; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal;">
</span><!--[endif]-->Girls Night Out (movie, a concert, roasting
marshmallows over a campfire, etc) <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 21.0pt; mso-list: l0 level1 lfo1; tab-stops: list 21.0pt; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal;">
</span><!--[endif]-->When my youngest daughter was 3-4 years old, a friend
took her for two hours every Friday so I could take a nap. <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 21.0pt; mso-list: l0 level1 lfo1; tab-stops: list 21.0pt; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal;">
</span><!--[endif]-->Different friends help me with hair and makeup and a
friend comes to my house to cut my hair. <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 21.0pt; mso-list: l0 level1 lfo1; tab-stops: list 21.0pt; text-indent: -.25in;">
<!--[if !supportLists]-->-<span style="font-size: 7pt; font-stretch: normal; font-variant-numeric: normal;">
</span><!--[endif]-->If I am planning a party or get together, friends make it happen. <o:p></o:p><br />
<br />
<i>(I will add: take me to the temple, take me to plant nurseries, plant the plants, make a birthday cake for my kids, go on walks with me, help me organize my house, help make grape juice from our grapes, help with home and yard improvement projects, read a talk for me in church, include my kids in outings, pick up a slurpee... Everyday there is something.) </i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That is a ridiculously short list compared to the amount of
help I received. The kindness of others
has been a huge blessing to my family.<o:p></o:p></div>
<br />
----------<br />
<br />
Continuing my thoughts here.... (Parts of this are a repeat of what I emailed.) <br />
<br />
<div class="MsoNormal" style="margin-left: 3.0pt;">
The other day in church a twelve
year old boy was sharing his testimony. One of the things this boy
talked about was how even if someone is different from you, you should still be
nice to them. <br />
<!--[if !supportLineBreakNewLine]--><br />
<!--[endif]--><o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
It made me think about how I treat
people. Why do I sometimes feel
uncomfortable around someone who is “different” OR someone who is experiencing
a difficult trial? Why am I hesitant to
talk to them? Perhaps I am worried how
they will react if I say something. Will
they be upset? Will they think I’m nosey?
<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
I find myself on this side,
knowing someone who is going through a hard time with their physical health, or
depression, a concern with their child, difficulties in their marriage,
grieving the loss of a child/parent/sibling, losing a job, etc. I want to do
something yet I don’t always know what to say or do. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
Sometimes it isn’t my place to be
involved, yet there are the times the person’s face keeps resurfacing in my
thoughts. <br />
<!--[if !supportLineBreakNewLine]--><br />
<!--[endif]--><o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
When you get that “feeling” to
check on a person it might seem random and out-of-the-blue, but God is giving
you a nudge towards someone who needs you.
I know that God is aware of each one us and it is through the actions of
others He sends help. Your gesture can
be as easy as sending a text, an email, a handwritten note or a treat. Call
them on the phone or stop by and say “Hi”. <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
It might seem like a small thing,
but it will mean a great deal to the individual knowing someone is aware of
them and cares. From the kindness of
others I know that this is true. <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
The other part to this was “Why might
I feel uncomfortable around someone who is different?”<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
For me, I probably just don’t know
what to say to them. <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
Here is a situation for the
purpose of comparison I have found myself in:<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
If you are trying to talk to
someone who speaks a foreign language the conversation often doesn’t go
far. You ask how they are doing and
other simple questions. After a while
you have both exhausted your limited similar vocabulary, the pauses in
conversation are a bit too frequent and you awkwardly part ways. You genuinely like the other person, but the
very important aspect of communication is difficult and frustrating. In the
future when you see that individual, you both smile and say hello and perhaps
ask how the other is doing, but that’s about it. <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
In the past I have been-there-done-that
from both sides. <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
If you are talking with me and you
don’t know what I said, just tell me and I will repeat it. No big deal.
This is much better than you nodding your head and pretending to
understand me when you don’t. <o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
One thing I DON’T like is when I
ask a certain 14 year old boy to do something and HE PRETENDS TO NOT understand
me. Hmmm… But THAT would probably happen even if I had clear speech.<o:p></o:p></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
<br /></div>
<div class="MsoNormal" style="margin-left: 3.0pt;">
Back to the topic. It's a two-way road. There are times when I am stand-offish and do not make it easy when someone is trying to talk to me. Developing and showing genuine interest in others is something I certainly can try to be better at. <o:p></o:p></div>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-bvZAcvRinjw/V7dIead5NuI/AAAAAAAABSU/Y5cSlD16uaENjMmqSYbhDy6JDpj_BjU4QCLcB/s1600/Stephensonrev1047.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="425" src="https://1.bp.blogspot.com/-bvZAcvRinjw/V7dIead5NuI/AAAAAAAABSU/Y5cSlD16uaENjMmqSYbhDy6JDpj_BjU4QCLcB/s640/Stephensonrev1047.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love this 14 year old boy, even when he acts 14. If you don't know what I mean than you probably aren't a parent of a teenager. (Thank you Mary for the picture.) </td></tr>
</tbody></table>
<br />Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-38038466106261151912016-06-21T14:49:00.000-07:002016-06-21T14:51:14.872-07:00als - pseudobulbar affect and a Rx worth looking into<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">I want to raise awareness of Pseudobulbar
affect, because until six years ago I had never heard of it. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 16.0pt;">First,
here is some condensed information straight from Wikipedia </span><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;"><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">(Oh admit it, you’ve used this site too.) <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">“Pseudobulbar
affect (PBA) is a type of affect characterized by involuntary crying or
uncontrollable episodes of crying and/or laughing, or other emotional displays
PBA occurs secondary to a neurologic disorder or brain injury. Patients may
find themselves crying uncontrollably at something that is only moderately sad,
being unable to stop themselves for several minutes. Episodes may also be
mood-incongruent: a patient might laugh uncontrollably when angry or
frustrated, for example.<o:p></o:p></span></i></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">“In
some patients, the emotional response is exaggerated in intensity… For example,
a sad stimulus provokes a pathologically exaggerated weeping response instead
of a sigh, which the patient normally would have exhibited in that particular.<o:p></o:p></span></i></div>
<div class="MsoNoSpacing">
<i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;"><br />
“Patients report that their episodes are at best only partially amenable to voluntary
control… they often have insight into their problem and judge their emotional
display as inappropriate and out of character. <o:p></o:p></span></i></div>
<div class="MsoNoSpacing">
<i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;"><br />
“Such sudden, frequent, extreme, uncontrollable emotional outbursts may lead to
social withdrawal and interfere with activities of daily living, social and
professional pursuits, and reduce overall healthcare. This may lead to severe
embarrassment and avoidance of social interactions for the patient, which in
turn impairs their coping mechanisms. <o:p></o:p></span></i></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">“Pseudobulbar
affect is a condition that occurs secondary to neurological disease or brain
injury, and is thought to result from disruptions of neural networks that
control the generation and regulation of motor output of emotions. PBA is most
commonly observed in people with neurologic injuries such as:<o:p></o:p></span></i></div>
<div class="MsoNoSpacing" style="text-indent: .5in;">
<b><i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">traumatic brain
injury (TBI) <o:p></o:p></span></i></b></div>
<div class="MsoNoSpacing" style="text-indent: .5in;">
<b><i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">stroke<o:p></o:p></span></i></b></div>
<div class="MsoNoSpacing" style="text-indent: .5in;">
<b><i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Alzheimer’s<o:p></o:p></span></i></b></div>
<div class="MsoNoSpacing" style="text-indent: .5in;">
<b><i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">multiple sclerosis
(MS)<o:p></o:p></span></i></b></div>
<div class="MsoNoSpacing" style="text-indent: .5in;">
<b><i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">amyotrophic lateral
sclerosis (ALS)<o:p></o:p></span></i></b></div>
<div class="MsoNoSpacing" style="text-indent: .5in;">
<b><i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Parkinson's disease
(PD)<o:p></o:p></span></i></b></div>
<div class="MsoNoSpacing" style="text-indent: .5in;">
<b><i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Lyme disease </span></i></b><i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;"> <o:p></o:p></span></i></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<i><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">“A
study designed specifically to survey for prevalence found that 49% of patients
with amyotrophic lateral sclerosis (ALS) also had PBA. "</span></i></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12pt;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12pt;">I’m back.</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">I started experiencing this side effect. For
me, while it was not yet debilitating, it was increasingly frustrating to not
be able to control my emotions as I had before. I didn’t
know why things were funnier or sadder than they ought to be. There were times where I would be crying and
in my head I was thinking, “What is going on?
This isn’t THAT sad, I have got to get a grip on things.” I could reason out the situation as it was
happening, but I was unable to control it. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">In relaying this to my doctor he told me
about pseudobulbar affect and recommended that I try Neudexta. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Within a week of going on Neudexta I began to
feel more in control and it was such a relief.</span></div>
<br />
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Neudexta comes a pill form and is pricey and
I have since switched to </span><b><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Dextromethorphan/quinidine
</span></b><span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">which has the same ingredients but it is a fraction of
the cost. It is mixed at a compounding pharmacy. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;"><br /></span></div>
Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-14432446578875287552016-06-17T10:12:00.003-07:002016-06-17T10:12:29.404-07:00als - just use the dang walker <div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">I think I have had an overall healthy
lifestyle for most of my life. I
figured while here on earth I get one body, so why not take care of it and then
see what it’s capable of. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Then slowly, bit by bit, the effects of als
began to creep through and I began to lose my body. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">The foot drop started in my left foot and
that is when I began to trip. Sometimes I would catch my toe on the edge of a
rug or an uneven sidewalk crack. If I
would put too much weight on the outside of a foot, pivot too quickly or walk
backwards… Those careless movements would topple me over. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">I tripped and stumbled and fell with
increasing frequency. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">For much of that time there was a walker in
my bedroom sitting there gathering dust. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">What’s that? Why wasn’t I using the walker? I would have to say it was because I was (am)
stubborn. I wanted to use up every
independent step I had. I knew once I
started using the walker there was no going back to unassisted walking. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Losing the ability to walk normal was
devastating. Walking is just something
you do. You shouldn’t have to think
about putting one foot in front of the other.
I have mentioned this before, but it blew my mind that for the first
time in my life I couldn’t just exercise harder to get stronger. I would still go to the gym and use the
elliptical machine to try and maintain the muscle I had, although there was no hope of building any new muscle. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Eventually the process of going to the gym
took too much energy. I bought a stationary
recumbent bike off of the classifieds and “worked out” at home. I used to do a simplified yoga to stretch
my always tight muscles. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">The day finally came when I was tired of always
being worried about falling. I sat on my
bed looking at the walker and finally took hold. And that was the end of unassisted
walking. But, more importantly, it was
the start of increased safety. The
walker provided needed balance and when I was tired I could turn around and sit
on the seat. Once I finally started using
the walker I felt a greater peace of mind.
<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Hindsight being 20/20, I should have started
using the walker long before. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Some time has passed since then and now I
only use the walker minimally during transfers and have moved on to… The wheelchair. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Mentally this was a VERY difficult transition
to go from walking to sitting. The first time I took the wheelchair out I
went on a walk with my sister and I was on the verge of tears the entire time. I was grieving the loss of my ability to
walk. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">But, it was time. The wheelchair has provided so much more
freedom to go where I want. I love being able to go to the park with my
kids or to 7-11 and get slurpees. I can
go on trails, or to Red Butte Garden or the zoo and not be completely exhausted
afterwards. We have a lift on the back
of our minivan to transport it around.
It works well enough since I can still walk a few steps with Jeff’s
assistance to transfer from chair to minivan.
I am so grateful he has big muscles :) <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Sometimes when Jeff will ask me, “What do you
want to do today?” <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">I say, “I want to go for a run.” <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">Don’t feel sorry for me (Ugh). Pity and self-pity is something I try hard
to avoid. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<br />
<div class="MsoNoSpacing">
<span style="font-family: "Candara",sans-serif; font-size: 12.0pt; mso-bidi-font-size: 11.0pt;">I just think that it would be so cool to break
out of this body and RUN. <o:p></o:p></span></div>
Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-38780538006944225312016-06-10T10:15:00.000-07:002016-06-17T10:03:13.316-07:00als - the "no hands diet"<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">I currently refer to how I eat as “The No
Hands Diet.” <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">The idea behind this is that you cannot use
your hands. At all. Every meal, every snack and every Costco
sample you eat is given to you by someone else.
If you are checking out a bowl of peanut butter m&m’s you can’t have
any until someone picks one up for you. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Hypothetically let’s say you are at a party
with a fantastic spread of food, and quite suddenly, you become aware of how
people around you eat and eat and eat. The entire time you are thinking, “All I want
is an m&m.” So you ask someone for
help and they kindly say, “Of course.” Then
the person licks some guacamole off of their fingers before taking a handful of
those m&m’s. THAT kills your appetite
pretty darn quick. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Moving on. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">I initially got on the No Hands Diet because
my arm muscles are weak, but what if a person begins to have difficulties
chewing and swallowing and find themselves choking on food. Then there is the option of a Percutaneous
endoscopic gastrostomy (PEG). This is a
flexible feeding tube that goes through a person’s abdominal wall into their
stomach. Nutritional supplements and
fluids are poured in the tube bypassing the need to use your mouth. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Going back four years ago this fall, I found
myself trying to decide whether or not to get a PEG tube. At the time I didn’t feel like I needed it
because I could eat well enough. But, I also didn’t want to put the procedure
off until it was my last resort. At the time I could still (very slowly and
with increasing difficulty) feed myself. I also didn’t want to get one because, for me,
it was admitting the disease was progressing and I wasn’t strong enough to
fight it. (I realize the flawed logic
now…) <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">In a very uncharacteristic Janae move I was proactive
and I decided to get the tube. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">While it is a relatively simple outpatient
procedure, having a hole cut through your stomach wall does make for a painful
recovery. </span><br />
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;"><br /></span>
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">I have had the tube replaced twice (in the same spot as the original, so no new hole) and those times the follow-up recovery was easy. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">I resented the tube for quite a while. I hated looking down and seeing the outline
of the tube under my t-shirts and would try to wear clothing that disguised its
presence. It was rarely used that first
year. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Now it is not a big deal at all. It is just part of the way things are. There are times where I am exhausted and it
is nice that Jeff can just pour a can of “food” in and just be done. I will add that even though those 350 calories
per can are handy, it often leaves me with a slightly queasy feeling. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Since I have a BlendTec blender, we occasionally
blend up real food to pour in. We have to
add a lot of liquid in order for the blend to go down smoothly. There are also
various recipes online. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Coming back to today, I average ½ my calories
through the tube, ¼ via a smoothie or nutrition drink and ¼ my calories come
from normal food. Those calories, in their
various forms, are all part of my No Hands Diet because now there is no way I
could feed myself. I’m grateful for the
many people who help me. <o:p></o:p></span></div>
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt; line-height: 107%;"><br />
Last week Jeff and I went out to dinner and we ordered the soup of the day. It
was a<i> Porcini Coconut Emulsion garnished
with fresh chives and a coconut crouton.</i>
I didn’t know what to expect but it turns out this soup is what dreams are
made of. There was no chance of that
going in the tube. I savored each
spoonful. </span>Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-23913810179265938242016-06-10T10:09:00.000-07:002016-06-10T15:59:14.079-07:00als 101<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">I think I will try a series of posts about
als 101. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Things I have done that have worked for
me. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">And also things that I wish I had done
differently. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: "candara" , sans-serif; font-size: 12.0pt;">Then again, I may get distracted by the warm summer
sunshine and my garden and only do one or two posts. <o:p></o:p></span></div>
Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.comtag:blogger.com,1999:blog-813948744743243415.post-47690699391245636362016-04-06T10:11:00.002-07:002016-04-06T10:11:18.716-07:00Monday night dance par-tay
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
Quick explanation:<span style="mso-spacerun: yes;"> </span>In
our church FHE (Family Home Evening) is one evening a week (usually Mondays)
where the family gets together.<span style="mso-spacerun: yes;"> </span>Typical
format is opening prayer, song, review the week’s schedule, short lesson,
closing prayer and then dessert.<span style="mso-spacerun: yes;">
</span>Recently we have had lessons on everything from the scriptures, to
family history, what to do in an emergency, or we have done an activity
together like climbing. <span style="mso-spacerun: yes;"> </span>The whole thing
is maybe 20-30 minutes. <o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<em><span style="font-size: large;">That being said ...</span></em> </div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
I have never had a FHE end quite the way it did two nights
ago.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
Jeff gave a lesson on money and budgeting, which is not the
most exciting topic. <span style="mso-spacerun: yes;"> </span>Now we normally
try to keep the lessons short, but this time it went long.<span style="mso-spacerun: yes;"> </span>I knew we blew our time limit when the kids questions
grew increasingly random, the girls became fidgety, and Erik with glazed eyes
put his head on the placemat still on the kitchen table. <o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
Trying to wrap it up quickly, Jeff asked Erik to pick a
closing song.<span style="mso-spacerun: yes;"> </span>He raised his head (which
now had the pattern of the placemat imprinted on his forehead) and said, “Take
on Me” (a song from the 80’s by A-ha).<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
I probably then said it should be a church song, and so Claire
and Jeff began to sing a primary song really fast to just end everyone’s
misery. <span style="mso-spacerun: yes;"> </span>At this point Erik wandered
out of the room and came back (smiling) with an ipod and speaker.<span style="mso-spacerun: yes;"> </span>The primary song was now over and “Take on
Me” began to play.<span style="mso-spacerun: yes;"> </span>Erik turned the
volume way <strong><em><span style="font-size: large;">WAYYY</span></em></strong> up and he began to sing. <span style="mso-spacerun: yes;"> </span>Within seconds Claire and Megan came back to
life and started dancing. I did my head-bob-dance and lip synced along. <o:p></o:p></div>
<o:p></o:p><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
All three kids then danced to (and belted out) “Living on a
Prayer” by Bon Jovi, some 21Pilots and finished with Coldplay. <o:p></o:p></div>
<br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<o:p> </o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<o:p> </o:p></div>
Jeff Janae & Crewhttp://www.blogger.com/profile/18054086591981367008noreply@blogger.com