tag:blogger.com,1999:blog-67119260695632843292024-02-06T20:29:05.103-08:00Homemade Tater TotOur life as a family coping with Duchenne Muscular Dystrophy.Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.comBlogger145125tag:blogger.com,1999:blog-6711926069563284329.post-45493053483487505782016-05-29T16:57:00.002-07:002016-05-29T16:57:55.783-07:00GrowthI am a member of the church of Christ. I grew up attending church services every Wednesday night and twice on Sundays. We went to Bible Bowl, Impact, Uplift, Castle Bluff, youth retreats, mission trips, and Singing School. <br />
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We ate together, camped out, slept on opposite sides of the gym during lock ins, and swam in gender specific shifts covered neck to knees. Our shorts that we <i>never </i>worn on Sundays were finger tips length at a minimum, girls tank tops were at least 3 fingers wide on the shoulders, and the boys were expected to cut their hair short (the 90s, though...).<br />
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We played Broom Ball, Blind Volleyball, and Hearts. We learned about the dangers of dancing and alcohol. We sang Jars of Clay and Steven Curtis Chapman (a capella, of course) on the van rides to Six Flags. We were taught that even one drink of beer was a sin and divorce was a 1 way ticket straight to hell. We knew our disciples, apostles, fruits of the spirit, books of the Bible, and John 3:16. We knew we were heathens for not being able to afford to go to the one christian school around here. We made some of our closest, longest lasting friendships in youth group (Hey DannaDannaDannaDannaDanna. Hey Stasia. Hey Dustin.). <br />
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We learned that "we don't run in the house of the Lord"! We learned to love our neighbors. We knew that Jesus was the son of God and that he died on the cross for our salvation. We learned to repent and be baptized. We were <i>typical </i>teenagers on Saturday nights and obedient followers on Sunday mornings. We developed a genuine love for each other and for Christ. We dreaded and avoided at all costs "Budget Sunday". We had annual homemade ice cream competitions. We learned that Satan was a big bad wolf and one should "Build Your Life on the Rock". <br />
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We laughed. A lot. As teens, we sat up front and in the center. We were taught that only men were allowed to lead during worship and that only baptized church members were allowed to partake of communion. We knew giggling during the sermon was shameful. We studied directly out of the Bible and no other text. We learned to be kind and compassionate and above all, to show the love of Jesus to everyone around us. We sang our hearts out while holding those heavy hymnals. We learned every word of "The Princess Bride". <br />
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We learned not to question the Elders, Deacons, Preacher, or tradition. We learned right and wrong and that there is no grey area. We learned that we were saved after baptism and yet taught to feel shame and guilt over every sin after it. We were warned not to take the Lord's Supper in an unworthy manner, never researching what exactly Paul meant when he said that in Corinthians. We were taught that a good christian accepts, gives, worships, and serves others without complaint or inquiry. <br />
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And then we grew up.<br />
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We had children. We started to think for ourselves. We began to entertain those questions about why we worship how we do. We started studying the Bible instead of memorizing lists and verses for Sunday School goals. We experienced life and the joys and traumas it brings and went to our Bibles and deacons and elders for answers and comfort. Some of us became the new crop of deacons and elders and preachers. Some of us dipped into the sins we were taught as children would prevent us from Heaven. Some of us came back. Some of us are still searching. Some of us are changing our churches and our worship. Some of us are stuck in the past and traditions. Some of us are caught somewhere in the middle. Like me.<br />
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I have been a member of four congregations in my life. The first two as a child and young married adult, the second two as a mom going through divorce with a terminally ill son. The first two taught me to live in shame and guilt and a constant state of repentance over the fact that my marriage was ending. The third congregation taught me that nothing I did caused Andrew to be sick and that God loves me more than my failed marriage. The fourth congregation has opened my mind to a whole new side of God and worship that I would have been to afraid to give a second look 2 years ago. I'm learning the difference between tradition and scripture. My teacher this morning described it as freedom and he's spot on. There's a <i>freedom </i>in my spiritual life I've never had before. <br />
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I have so much love for my years at the first church. My foundation in Christ was set there. My youth minister performed my wedding ceremony when I was 25. I learned so much about how to treat people with love and compassion. I keep in touch with almost my entire youth group. We've been to each other's weddings, baby showers, and life events. <br />
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Our children play together.<br />
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My second church was by far the most black and wide, tradition lead congregation of them all. We even had a sermon one Sunday morning on the proper attire for worship. It wasn't 'come as you are' it was 'go to the store and buy something fancy because anything less is disrespectful to the Lord'. It was the only place to go on the glacier, so I felt I had no choice. What was I supposed to do? Not go at all? For shaaaaaaame!!!<br />
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Those 30 years spent in the uber conservative/traditional congregations left me very conflicted. I knew that my divorce was not of my will, but I had it drilled into me that being divorced meant an eternity in the pits of Hell. Period. I knew there was punishment for sin while on this Earth, too. So I had a small nagging question of whether or not I deserved to have a child with this awful disease because of the mistakes I'd made during my own life. I spent two years in counseling over both of these issues. <br />
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My third was my beloved Barker's Mill in Clarksville, TN. That was a church family like nothing I'd ever experienced before. <br />
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In the military, bonds are created quickly and deeply, and so it was there. I've never felt so close and so loved and so accepted by an entire congregation like that. There were no cliques, no tiers. Just christian love. <br />
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I was so encouraged to grow in my prayer life and in my involvement there. How I miss hearing Andrew's name being brought before the Father every week. Like my first church, I made friendships there that I will have forever (Hey Desi. Hey Whitney. Hey Candice.) I even got to bring one of my favorite Alaskan based friends into the fold (Hey Valerie.). <br />
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That was Andrew cheering one of Valerie's children on during her baptism. They showered Andrew with birthday cards 9 months after we'd left them.<br />
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That being said, Barker's Mill does still tend to operate on the more traditional end of the spectrum. And that's ok. I didn't get a sense of close mindedness from them, more of an operational conservative way about the church service. (hymnals only, women not in leadership roles, closed communion). The people of Barker's Mill taught me that I am still worthy and forgiven even in divorce. I learned about the passage in John 9 that frees me from carrying responsibility over my son's random mutation in his genes and drove deeper my belief that all things can and should be used for the glory of God.<br />
<span class="reftext" style="background-color: #fdfeff; color: #aa4400; font-family: "arimo" , "arial" , "helvetica" , sans-serif; font-size: 11px; font-weight: 700; line-height: 14px; margin-left: 1px; margin-right: 2px; text-align: justify; vertical-align: text-top;">"1</span><span style="background-color: #fdfeff; color: #001320; font-family: "arimo" , "arial" , "helvetica" , sans-serif; font-size: 15px; line-height: 20px; text-align: justify;">As Jesus was passing by, He saw a man blind from birth. </span><span class="reftext" style="background-color: #fdfeff; color: #aa4400; font-family: "arimo" , "arial" , "helvetica" , sans-serif; font-size: 11px; font-weight: 700; line-height: 14px; margin-left: 1px; margin-right: 2px; text-align: justify; vertical-align: text-top;">2</span><span class="highl" style="background-color: #fff4ec; color: #001320; font-family: "arimo" , "arial" , "helvetica" , sans-serif; font-size: 15px; line-height: 20px; text-align: justify;"><a href="http://biblehub.com/greek/846.htm" style="color: #008cea; text-decoration: none;" title="846: autou (PPro-GM3S) -- He, she, it, they, them, same.">His</a> <a href="http://biblehub.com/greek/3101.htm" style="color: #008cea; text-decoration: none;" title="3101: mathetai (N-NMP) -- A learner, disciple, pupil.">disciples</a> <a href="http://biblehub.com/greek/2065.htm" style="color: #008cea; text-decoration: none;" title="2065: erotesan (V-AIA-3P) -- (a) to ask (a question), question, (b) to request, make a request to, pray.">asked</a> <a href="http://biblehub.com/greek/846.htm" style="color: #008cea; text-decoration: none;" title="846: auton (PPro-AM3S) -- He, she, it, they, them, same.">Him,</a> <a href="http://biblehub.com/greek/4461.htm" style="color: #008cea; text-decoration: none;" title="4461: Rhabbi (N-VMS) -- Rabbi, my master, teacher; a title of respect often applied to Christ.">“Rabbi,</a> <a href="http://biblehub.com/greek/5101.htm" style="color: #008cea; text-decoration: none;" title="5101: tis (IPro-NMS) -- Who, which, what, why.">who</a> <a href="http://biblehub.com/greek/264.htm" style="color: #008cea; text-decoration: none;" title="264: hemarten (V-AIA-3S) -- Originally: to miss the mark, hence (a) to make a mistake, (b) to sin, commit a sin (against God); sometimes the idea of sinning against a fellow-creature is present.">sinned,</a><a href="http://biblehub.com/greek/3778.htm" style="color: #008cea; text-decoration: none;" title="3778: houtos (DPro-NMS) -- This; he, she, it.">this man</a> <a href="http://biblehub.com/greek/2228.htm" style="color: #008cea; text-decoration: none;" title="2228: e (Conj) -- Or, than.">or</a> <a href="http://biblehub.com/greek/846.htm" style="color: #008cea; text-decoration: none;" title="846: autou (PPro-GM3S) -- He, she, it, they, them, same.">his</a> <a href="http://biblehub.com/greek/1118.htm" style="color: #008cea; text-decoration: none;" title="1118: goneis (N-NMP) -- A begetter, father; plural: parents.">parents,</a> <a href="http://biblehub.com/greek/2443.htm" style="color: #008cea; text-decoration: none;" title="2443: hina (Conj) -- In order that, so that.">that</a> <a href="http://biblehub.com/greek/1080.htm" style="color: #008cea; text-decoration: none;" title="1080: gennethe (V-ASP-3S) -- To beget (of the male), (of the female) to bring forth, give birth to.">he was born</a> <a href="http://biblehub.com/greek/5185.htm" style="color: #008cea; text-decoration: none;" title="5185: typhlos (Adj-NMS) -- Blind, physically or mentally.">blind?”</a></span><span style="background-color: #fdfeff; color: #001320; font-family: "arimo" , "arial" , "helvetica" , sans-serif; font-size: 15px; line-height: 20px; text-align: justify;"></span><span class="reftext" style="background-color: #fdfeff; color: #aa4400; font-family: "arimo" , "arial" , "helvetica" , sans-serif; font-size: 11px; font-weight: 700; line-height: 14px; margin-left: 1px; margin-right: 2px; text-align: justify; vertical-align: text-top;">3</span><span style="background-color: #fdfeff; color: #001320; font-family: "arimo" , "arial" , "helvetica" , sans-serif; font-size: 15px; line-height: 20px; text-align: justify;">Jesus answered, “Neither this man nor his parents sinned, but this happened that the works of God would be displayed in him.…"</span><br />
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I cherish every minute I got to be a part of the Barker's Mill congregation and if life were to ever take me back there, I'd join again.</div>
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And now, here I am at Sylvan Hills church of Christ. They have mic'd singers in the pews (gasp!). They don't have any hymnals in the backs of the chairs (shriek!). There is a woman in charge of the children's ministry (whaaaaaaat????). They let me run a yoga class in their classroom building (eeeeek!)<br />
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Our children partake in the Lord's Supper right along with those of us who have been baptized (<i>faint</i>). I was hesitant at first. More like indignant. But as I worshiped there and got to know people, I realized that these weren't spur of the moment decisions. Elders meet and study and pray on every new thing that comes up. They keep their eyes open to new ideas. They entertain questions. They have a class on Sunday mornings called "Round Table It" specifically to research and pray on the questions we weren't allowed to have in my old church! We are allowed to have opinions and voice them. My child has learned more about who Jesus is to him personally in the one year we've worshiped here than I ever did as a child. Yes, the kids still memorize Bible verses and the plagues and such things, but the emphasis here is so much deeper than repeating words back to their teachers.</div>
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These sweet babies, MY baby, will have a completely different journey in Christ than I did. Andrew will not have the same fears, shame, guilt, and conflicting spiritual ideas as I did. As I do. Its hard work unlearning what you've known your whole to be true. I'm a work in progress, Little will always know the freedom of being allowed to raise questions, leave traditions behind that dont have a hard scriptural basis, and being able to worship the way that sets right in his soul. Gone are the days of being forced to sit in silence and stillness (for me - this Little boy has always been a roamer).</div>
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This is not a post meant to bash anyone's congregation or worship style. What I'm learning is that there's not any one right way to come together in His name. I'm not saying all old school churches of Christ are beating down their members' ideas. I'm not saying your grandparents are wrong I'm not saying this was anyone else's experience other than mine and those I've discussed this with. I'm saying that <b>I </b>was taught things as concrete that are fluid. I am saying that I am so incredibly thankful that I am raising my child in a church family where he will grow up knowing he is loved by his Father even through his sins. When Andrew needs to ask for more clarity on a biblical principle, he will be encouraged instead of hushed or written off as argumentative. I'm saying that it is my job, as his mother and as a christian, to study and find out the truth in the Bible instead of just taking someone else's view as the end of the discussion.<br />
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Andrew is growing up in a time of worship where he will be learning that fellowship is just as important as reverence. I am so grateful for this place and what I'm learning. I am so excited for where this faith adventure takes Andrew. I'm excited to see where it takes me.</div>
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<br />Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com1tag:blogger.com,1999:blog-6711926069563284329.post-17164973885954221432015-06-24T11:03:00.001-07:002015-06-24T11:03:21.808-07:00A LittleYogaHey friends! So I've had a lot going on these past few months. Like a LOT a lot. Too much to write in here right now. Andrew and I are still in the funk of it at the moment, but it'll all work out one day. I'll update I. Here at some point, but for today I want to talk about yoga. I have set up a GoFundMe account to see if I can get myself Yoga Alliance certified to start off this newest chapter of life. I'll copy/paste it here.<br />
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<a href="http://www.gofundme.com/alittleyoga" target="_blank">GoFundMe.com/aLittleYoga</a></div>
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<span style="-webkit-text-size-adjust: auto; background-color: white; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px;">Hey, Everyone! My name is Katherine and yes, I feel like an a$$ asking you for your hard earned money. This is different from my yearly fundraising for MDA - that money doesn't go to me and could possibly fund the cure for my son someday. So I have NO issue asking you to fork over some change for that. But this? Money for me? Yeah. Aca-awkward. But I don't know what else to do. So here goes.</span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: white; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px;">I have a 5 yr old son named Andrew. He is the most wonderful, difficult, silly, stubborn, beautiful mess. He is so Little and smart and loves to dance and is really starting to develop a precious love for God. He also happens to have Duchenne Muscular Dystrophy, a rare and terminal rapidly progressive muscle wasting disease. Little can walk today, but in a few years he will not. Soon after that, he will lose the ability to lift his arms. His lungs will fail. His heart will fail. There is no cure. There is no treatment nor drug to slow the progression of the disease. He is not expected to live past his early 20s. </span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: white; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px;">I have chronic headaches, neck and shoulder pain that trigger migraines every few days. The posture one takes from caring for someone one who only comes up to your waist coupled with carrying said human on your left hip every day for 5.5 years will do that to you. I will be doing this his entire life. (Yes, I do have to carry him even though he can walk. He moves at a snail's pace and fatigues after just a few minutes on his feet.)</span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: white; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px;">So what does all this have to do with yoga and why do I need financial help?</span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: white; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px;">Well, yoga is the one hour of the day where I am both pain free and anxiety free. Practicing takes away every muscle ache, every desire to crack a vertebrae. I focus on breathing and stretching and not on Little's upcoming doctor appointments or how many times he's already fallen that day. I want to give that hour to others. I want to give an hour like that to my son. I want to go into senior centers and rehabilitation centers and give an hour of relief to them. I want to support ,yield and my child financially. I want to give him a future above the poverty level. I want to safely and effectively stretch my child when he can no longer move on his own. But to do that, I need certification. And certification costs money. Andrew and I are on an incredibly tight (like non existent) budget due to the loss of income that has come our way recently. We have had to sell our home in KY and head to AR. We are also mooching off of my sister and brother-in-law so we have a roof over our heads. So, yeah, no extra change for yoga school. But this is what I want to do with my life. </span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: white; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px;">I need to start NOW while Little is relatively healthy and I can get to class for 9 months, start teaching, and eventually rent a studio space. I don't know how long I have with Andrew, and I want to do everything I can to make his quality of life better. So that's why I need your help. School starts in Sept and I need to register within the next few weeks, but I can't register unless I know I will be able to pay for it. $3000 for certification, $ for classes outside of the teaching studio where I can do my homework, and $ for practice tools. $3500 should cover it. So, that's my novella. </span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: white; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px;">Can you help us?</span><br />
<span style="-webkit-text-size-adjust: auto; background-color: white; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px;">Namaste - Katherine</span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: white; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px;">You can follow along with us at (and our FB link is on the right hand side of the page)</span><br />
<a href="http://www.homemadetatertot.blogspot.com/" style="-webkit-font-smoothing: antialiased; -webkit-text-size-adjust: auto; color: rgb(88, 166, 222) !important; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px; margin: 0px; text-decoration: none;" target="_blank"></a><a class="txt1" href="http://www.homemadetatertot.blogspot.com/" rel="nofollow" style="-webkit-font-smoothing: antialiased; -webkit-text-size-adjust: auto; color: rgb(88, 166, 222) !important; font-family: Lato, sans-serif; font-size: 18px; line-height: 25px; margin: 0px; text-decoration: none;" target="_blank">www.HomemadeTaterTot.blogspot.com</a><br />
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<a href="http://www.gofundme.com/alittleyoga" target="_blank">GoFundMe/aLittleYoga</a></div>
Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com1tag:blogger.com,1999:blog-6711926069563284329.post-58952303111250661682014-10-11T09:04:00.002-07:002014-10-11T09:04:45.120-07:00But I Thought You'd Already Been Baptized...<div class="separator" style="clear: both; text-align: center;">
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Last night, I repented and was baptized. Again. Second time now. The first was when I was 14 years old. 20 years ago. Feels like 4 lifetimes ago. When I did it back then, I believed that I was doing the right thing - declaring that I do believe that Jesus is the Son of God and that he died for the remission of my sins. The end. In my 14 year old mind, that was the thing you do in the Church when you believe and you're about that age. I didn't give much thought to the way I was supposed to live my life afterwards. BECAUSE I WAS 14. <br />
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Ever since Little was born, my perspective on everything has changed. Yes, I know all mothers say that, but not all mothers have a child with a rapidly degenerative and ultimately fatal muscle disease. When I say my point of view has changed, I'm talking about a Mt. Vesuvius kind of obliteration of everything "pre-Little". These past almost 5 years have put a nagging in my heart that I wasn't quite right with God. These past 3 months in particular have brought it front and center in my mind. I've been worrying more, allowing anger and resentment to take hold, and questioning whether or not I was all in when I went under the water as a teen. Was I wholeheartedly baptized or did I just get wet? No one should live with that doubt. When you make the decision to be baptized and follow through on it, then your name is written in the Book of Life. I haven't been able to say to myself, "Yes, absolutely" when wondering if I'll go to Heaven when I die. I don't want to be hopeful for it anymore, I want to KNOW. And now I know; my name IS there. I'm not saying anyone has to go and be baptized after they've already done it. I'm saying <b>I</b> needed to step back into that water. <b> I </b>needed to rededicate myself to Him. But if you are questioning yourself and your previous intentions, then maybe you do, too.<br />
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Over the summer, I learned that two of my dear friends who I invited to start attending church services with me made the decision and were baptized. Then a few weeks later, one of their dads did the same. I was lucky to be in town that time and got to witness it. Then 2 weeks ago, their sister took the plunge. They thanked me every time one of them repented and alhtough I was overjoyed at their decisions, I also felt a pang of guilt and shame. It took me until yesterday to realize why. Who was I to be thanked for leading anyone to God when I wasn't even sure I was there? What kind of hypocrite am I to tell others they need to be baptized when I needed to be reborn myself?<br />
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I get it now in a way my 14 year old self wasn't mature enough to comprehend. I have a child now and I experience the love a parent (God) has for their children (us). I think about the way Mary and God must have felt watching Jesus up on the cross and it breaks my heart in a way it never did before Little. My son will suffer and die from his disease, but the research and studies and clinical trials he is and will be a part of will help these doctors cure future generations of boys with Duchenne. Now I am NOT equating Duchenne with the cross or the treatments with salvation, please don't misunderstand me. What I'm saying is that I have the <span style="font-size: x-small;">tiniest </span>glimpse of what it is like to watch your child suffer for a greater cause. When he gets those injections one day, when he suffers side effects from a new medicine, when he is bruised from testing out leg braces, when he swells and screams in pain and cries from giving blood for a lab to study and use - those are physical sacrifices he is and will endure for the sake of DMDers to come. AND IT KILLS ME. This smallest of insights into what Mary and God must have felt to give their child to the cross for us is still brutal. Now magnify that 100000 times. That's what it must have been for them on that day to watch Jesus endure what he did. I don't believe I could have handled it. And to know that it was for us - sinners? People who don't deserve dog scraps? How can I keep living a life for me and not God when He gave <i>his son</i> for me?????? <br />
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So I brought it up to two of my sweet friends last night and one of them blurted out "So let's do it tonight." And she was right. When you know, you go. Don't waste another second. So we didn't.<br />
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The second most precious part about it (bc obviously salvation is the most) was having my son at the foot at the baptistery. He got to watch Mommy wash her sins away and now we have this moment together.</div>
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I sat there are bawled for a moment (who's surprised?) while Andrew's tiny hands clapped for me over in the corner of the photo. The blonde head in the picture is my friend's son. My preacher's grandson was there, too. It was so awesome to get to show these three little souls what we do when we decide to follow Jesus.</div>
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In these last 20 years, I have made some pretty poor choices (some great ones, too). I never stopped believing that Jesus was the way, but my life didn't always show it. That's what we're supposed to do, though, be a light for Jesus. No, my light never went out, but it sure flickered on and off. You couldn't always look at me and think, "Oh, she must be a Christian". But that's what I want. That's what God wants. To begin my life anew for Him, I knew I needed to rededicate and recommit myself to His will. As my preacher said, the troubles I had before going in the water will still be there when I come out - so this is no blink of an eye change for me. I will still make inappropriate jokes. I will still cuss when I stub my toe. I will still have feelings of anger, resentment, jealousy, pride, and impatience. But I can give them to God. I can ask for his help and forgiveness. I can rest easy, safe in the knowledge that God's got this. <br />
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Acts 2:38 <span style="background-color: #eeeeee; color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 20px; text-align: justify;">Peter replied, "Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit.</span><br />
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Acts 3:19 <span class="reftext" style="background-color: #fdfeff; color: #0092f2; font-family: Arial, Helvetica, sans-serif; font-size: 11px; line-height: 14px; margin-left: 1px; margin-right: 2px; text-align: justify; vertical-align: text-top;"><a href="http://biblehub.com/acts/3-19.htm" style="color: #0092f2; text-decoration: none;">19</a></span><span class="highl" style="background-color: #fff4ec; color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 20px; text-align: justify;">"Therefore repent and return, so that your sins may be wiped away, in order that times of refreshing may come from the presence of the Lord</span><br />
<span class="highl" style="background-color: #fff4ec; color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 20px; text-align: justify;"><br /></span>
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<span style="color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif;"><span style="background-color: white; line-height: 20px;">So above you see that the Bibles does instruct us to be repentant and baptized for the remission of our sins. And below, you will see that Jesus, himself, repented and was baptized.</span></span></div>
<span class="highl" style="background-color: #fff4ec; color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; line-height: 20px; text-align: justify;"><span style="font-size: x-small;"><br /></span></span>
<span class="highl" style="color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; line-height: 20px; text-align: justify;"><span style="font-size: x-small;"><strong style="background-color: #fff4ec; color: black; font-family: Verdana, sans-serif; line-height: normal; margin: 0px; padding: 0px; text-align: left;">Matthew 3:13-17 </strong><em style="background-color: #fff4ec; color: black; font-family: Verdana, sans-serif; line-height: normal; margin: 0px; padding: 0px; text-align: left;">“Then cometh Jesus from Galilee to Jordan unto John, to be baptized of him. But John forbad him, saying, I have need to be baptized of thee, and comest thou to me? And Jesus answering said unto him, Suffer it to be so now: for thus it becometh us to fulfil all righteousness. Then he suffered him. And Jesus, when he was baptized, went up straightway out of the water: and, lo, the heavens were opened unto him, and he saw the Spirit of God descending like a dove, and lighting upon him: And lo a voice from heaven, saying, This is my beloved Son, in whom I am well pleased</em><span style="background-color: white; color: black; font-family: Verdana, sans-serif; line-height: normal; text-align: left;">.”</span></span><span style="color: black; font-family: Verdana, sans-serif; line-height: normal; margin: 0px; padding: 0px; text-align: left;"><br style="margin: 0px; padding: 0px;" /><br style="margin: 0px; padding: 0px;" /><span style="background-color: white;">And here, is how I felt last night. This passage shows you the urgency in which we should stop what we are doing and take the plunge, so to speak. We don't know what the next hour holds, so why wait? Why take that chance?</span></span></span><br />
<span class="highl" style="color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; line-height: 20px; text-align: justify;"><span style="color: black; font-family: Verdana, sans-serif; line-height: normal; margin: 0px; padding: 0px; text-align: left;"><span style="background-color: white;"><br /></span></span></span>
<h1 class="passage-display" style="background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 14px; font-weight: 500; line-height: 1.1; margin: 0px 0px 20px;">
<span class="passage-display-bcv" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; display: inline; font-size: 18px; margin: 0px; padding-right: 10px;">Acts 8:35-38</span><span class="passage-display-version" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; display: inline;">New <span feedid="4n" ksfjoiq="kaoaoifj" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; display: inline; float: none; padding: 0px; position: relative; z-index: 2;" tfsid="d54c35d21d82115eb375033ce9358433" uid="15624451bd1bc5e11407520ce28ab95a"><a href="https://www.biblegateway.com/#American Standard" style="-webkit-box-shadow: none; -webkit-font-smoothing: antialiased; background: transparent; border: none; box-shadow: none; box-sizing: border-box; color: #b34b2c; cursor: pointer; display: inline; font-size: inherit; font-style: initial; font-weight: bold; margin: 0px; padding-bottom: 0px; position: static; text-transform: uppercase; width: auto;">AMERICAN STANDARD</a><span class="intext_tfx" style="-webkit-font-smoothing: antialiased; background: url(data:image/png; border: none !important; box-sizing: border-box; cursor: pointer; display: inline; float: none; margin-left: 2px !important; vertical-align: top !important;"> </span></span> Bible (NASB)</span></h1>
<span class="highl" style="color: #001320; font-family: Trebuchet, Arial, Helvetica, sans-serif; line-height: 20px; text-align: justify;"><span style="color: black; font-family: Verdana, sans-serif; line-height: normal; margin: 0px; padding: 0px; text-align: left;"></span></span><br />
<div class="first-line-none" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; margin-bottom: 10px;">
<span class="text Acts-8-35" id="en-NASB-27212" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="versenum" style="background-color: white; box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;">35 </span><span style="background-color: #eeeeee;">Then Philip <span class="crossreference" data-cr="#cen-NASB-27212A" data-link="(<a href="#cen-NASB-27212A" title="See cross-reference A">A</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>opened his mouth, and <span class="crossreference" data-cr="#cen-NASB-27212B" data-link="(<a href="#cen-NASB-27212B" title="See cross-reference B">B</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>beginning from this Scripture he <span class="crossreference" data-cr="#cen-NASB-27212C" data-link="(<a href="#cen-NASB-27212C" title="See cross-reference C">C</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>preached Jesus to him.</span></span><span style="background-color: #eeeeee;"> <span class="text Acts-8-36" id="en-NASB-27213" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;">36 </span>As they went along the road they came to some water; and the eunuch *said, “Look! Water! <span class="crossreference" data-cr="#cen-NASB-27213D" data-link="(<a href="#cen-NASB-27213D" title="See cross-reference D">D</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>What prevents me from being baptized?”</span> <span class="text Acts-8-37" id="en-NASB-27214" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;">37 </span>[<span class="footnote" data-fn="#fen-NASB-27214a" data-link="[<a href="#fen-NASB-27214a" title="See footnote a">a</a>]" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;">[<a href="https://www.biblegateway.com/passage/?search=Acts+8%3A35-38&version=NASB#fen-NASB-27214a" style="-webkit-font-smoothing: antialiased; background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; box-sizing: border-box; color: #b34b2c; cursor: pointer; text-decoration: none; vertical-align: top;" title="See footnote a">a</a>]</span>And Philip said, “If you believe with all your heart, you may.” And he answered and said, “I believe that Jesus Christ is the Son of God.”]</span> <span class="text Acts-8-38" id="en-NASB-27215" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="versenum" style="box-sizing: border-box; font-family: Arial; font-size: 12px; font-weight: bold; line-height: 22px; position: relative; top: 0px; vertical-align: top;">38 </span>And he ordered the <span class="footnote" data-fn="#fen-NASB-27215b" data-link="[<a href="#fen-NASB-27215b" title="See footnote b">b</a>]" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;">[<a href="https://www.biblegateway.com/passage/?search=Acts+8%3A35-38&version=NASB#fen-NASB-27215b" style="-webkit-font-smoothing: antialiased; background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; box-sizing: border-box; color: #b34b2c; cursor: pointer; text-decoration: none; vertical-align: top;" title="See footnote b">b</a>]</span>chariot to stop; and they both went down into the water, Philip as well as the eunuch, and he baptized him.</span></span></div>
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So what are <b>you</b> waiting for?</div>
Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com2tag:blogger.com,1999:blog-6711926069563284329.post-3686514957300703052014-09-08T10:36:00.001-07:002014-09-08T10:36:51.473-07:00How Ya Feelin', CCK? <div style="text-align: center;">
<b>We feel sooooooooooooooooo good. </b></div>
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<b>Ugh we feel so good </b></div>
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<b>ugh!</b></div>
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<b>xxxxx xxxxx </b></div>
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<b>xxx xxx </b></div>
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<b>whoop </b></div>
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<b>x </b></div>
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<b>ugh</b>!</div>
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Any of you reading this who have been there just did the hand motions, didn't you? ;) Here's Andrew's version:</div>
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<img height="400" src="https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-xaf1/v/t1.0-9/10635774_711234605623621_5920969251603649026_n.jpg?oh=eab2ecb79c408b3af702b7255385525f&oe=5484699D&__gda__=1419707180_156595d7360441de4023c605bc26aad8" width="300" /></div>
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Little and I just got back from one amahzing weekend at Camp Courageous Kids in Scottsville, KY. </div>
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CCK is a not for profit medical camping facility on a 168 acre farm in Scottsville, KY. It took Andrew and I about 2 hours to get there through some.....interesting....back roads. It was downright terrifying, ya'll. For about 12 miles, the road was only large enough for about 1.5 cars at a time. That means that if someone is coming from the opposite direction, you both have to swerve off the road to avoid a head on collision. Thank you, GPS, for that lovely route you chose for us. Anyway, CCK is a fully functioning campground. They don't water down the activities even though all of their campers (except for siblings on Family Weekends) are special needs/medically complex kiddos.</div>
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Little got to do all of the things that your kids do at camp:</div>
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<b>basketball</b></div>
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He chose to use that big purple ball instead of a regular basketball.</div>
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<b>bowling</b></div>
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I think this was his favorite thing. We went 3 different times.</div>
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<b>arcade/fun zone games</b></div>
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It got <i>wild </i>at the skee ball table. We were all ducking and dodging.</div>
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<b>s'mores</b></div>
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<b>archery</b></div>
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Real arrows here, guys. I told you they don't water down the activities.</div>
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He actually hit the paper the target was on!</div>
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<b>horseback riding</b></div>
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<img height="640" src="https://fbcdn-sphotos-f-a.akamaihd.net/hphotos-ak-xfp1/v/t1.0-9/10696209_711235198956895_7872550500034638071_n.jpg?oh=c3d182b78951b834a85235f7bc67c2c1&oe=548AC2CC&__gda__=1419405381_5b17cd2fe472f48f29858625fe8e7abd" width="426" /></div>
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The horseback riding got to me. I couldn't believe that I didn't have to say one word to the staff about how to handle Little, what not to do, that he would need someone to walk beside him in case his body wore out and he couldn't hold on - they just all knew. They were so prepared and <i>on it</i>. I mean these folks do their homework. I watched him riding around on Rocky and that's when it hit me: </div>
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<b><i>Little isn't "special" here.</i></b></div>
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THAT'S IT, guys. THAT'S THE JEWEL. I couldn't stop the tears from streaming down my face. Yes, I know, you all already figured I would cry at some point. But these were tears of relief and of joy in my heart. Tears of gratitude to these people and this place for giving me and Andrew 2 days of NORMALCY. We were in a world where he wasn't <i>the one with the disease</i>. He was just Andrew. We sepnd every day of our lives under the umbrella of Duchenne, but none of that mattered here. Here was just another camper. I can't possibly put into words the release my soul felt. I made 2 of the staff members cry, too. Go me. Ha! I'm glad that they got to really see gratitude from one of the parents' they were helping.</div>
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Even the horses were in on it. I watched one of the largest horses I've ever seen up close, slowly and cautiously walk over to a little girl who was laid out in a fully reclined power chair - I don't think she could move much more than her eyes - tubes, beeping machines, etc - and start to nuzzle her. It was so sweet. The horse sniffed and licked and nudged her the way a mama cat tends to her kittens. Just generally fussed over her. Bah. I love horses now.</div>
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<b>fishing</b></div>
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He was really more into just throwing the bait into the water and watching the smaller fish swim up and fight over it.</div>
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THESE GIRLS! Ohhh, these girls. They are who really made everything possible for us. The blonde is Macey and the brunette is Chrystal. They were our personal sponsors for the weekend, except we just referred to them as "Andrew's Girls". Every family at camp was assigned one sponsor, or helper, for the entire weekend. The sponsor did everything the family did, when the family did, however the family needed. The only time they were away from the family was to sleep. I hit the frikkin jackpot with mine. Not only did I get two of them (Macey's family didn't show up, so she asked if she could join ours), but they are both in their final year of their nursing program. So I felt completely at ease leaving Little with them whenever I had to run back to the lodge to grab something or wanted to stay and talk to another family while Andrew wanted to go play in the gym. Chrystal and Macey were so kind and sweet and willing to do whatever Andrew wanted. I miss having that kind of energy! They spoiled him. On Saturday, I counted three ice cream sandwiches in his hand at different times throughout the day. Little just loved his girls. First thing in the morning he would rub his little eyes and ask, "Is Chrystal going to be in the breakfast room with us?". They really spoiled me, too. I didn't know what to do with myself the first night when they would push his stroller and open doors and refill his drink at dinner - it was strange having so much help! I got used to it <i>realquick.</i></div>
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He also got to go <b>swimming</b> and watched a <b>movie under the stars</b>.</div>
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He snuggled up to the girls outside on the blankets but it was too dark to get a picture of it. Adorable.</div>
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Some of the activities he didn't choose were <b>arts & crafts, woodshop, beauty shop, & baking, </b>although he did manage to sneak into the kitchen and flash his big eyes at the staff in order to secure someone else's pizza roll and cupcake. The stinker.</div>
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Camp ended on Sunday after the reveal of the camp painting. It was "Pajama Party" weekend (hence the movie out under the stars late at night), so our picture was of the camp mascot in his pjs.</div>
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<img height="640" src="https://fbcdn-sphotos-b-a.akamaihd.net/hphotos-ak-xap1/v/t1.0-9/10612824_711244738955941_571504625053080891_n.jpg?oh=3bd3eb3178b035f1e055f02f7d4fd5aa&oe=54917B63&__gda__=1419828266_db834bb6954fa8de8228aa764f860714" width="480" /></div>
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Our names are on the left hand side, straight across from where his nose should be, on the edge of the canvas.</div>
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I've never seen Andrew use so much energy. He just kept going! Usually just one activity like those would've been enough to wear him out for 2 days, but he was just so pumped and caught up in the action that he didn't want to stop. CCK is the location that Nashville's MDA uses for their summer camps, so now when Andrew turns 6, I won't be as anxious about letting him go. There are "no mamas allowed" at MDA summer camp, as Linda Decker likes to remind me.</div>
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I really, truly cannot say enough good things about this facility and the staff (both the year round staff and the volunteers). Andrew's Girls even gave up a weekend they should have been studying since they have a big test today, to volunteer. If you get a chance, you should definitely go/send your child. They will leave there uplifted, more confident, and with a lifetime of memories (and so will you if it is a family weekend). Check them out online or call the center for more information.</div>
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<span style="font-size: large;"><b>The Center for Courageous Kids</b></span></div>
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<span style="font-size: large;"><b>1501 Burnely Rd</b></span></div>
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<span style="font-size: large;"><b>Scottsville, KY</b></span></div>
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<span style="font-size: large;"><b>42164</b></span></div>
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<span style="font-size: large;"><b>270.618.2900</b></span></div>
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<span style="font-size: large;"><b><a href="http://www.thecenterforcourageouskids.org/index.html" target="_blank">www.thecenterforcourageouskids.org</a></b></span></div>
Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com1tag:blogger.com,1999:blog-6711926069563284329.post-5931839448152330832014-07-30T08:42:00.000-07:002014-07-30T08:44:03.795-07:00The One Where I Forget His DuchenneversaryYesterday was the third anniversary of Little's diagnosis. I forgot and I think that's awesome. Had I thought about it that morning, I may have had a bitter day. It may have clouded over everything I did that day, and yesterday was hard enough without it! Here is what he looked like at the time of his dx:<br />
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Yeah, I know, most adorable 18/19 month old ever.</div>
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On Friday, Little had a surgery to remove dead and damaged fascia from around the site of his hernia operation from last March. Monroe Carroll Jr Children's Hospital at Vanderbilt University was once again stellar in their treatment of Andrew. The anesthesiologists came in completely prepared and knowledgeable of his DMD and the risk of MH and had precautions already in place. MH = Malignant Hyperthermia. Basically, a person with Duchenne can't metabolize inhaled anesthesia like your average person can. Little's body, instead, will attempt to burn off the gases by raising his body temperature and in the process, burn himself to death. Like literally boil his organs. Scary stuff. So there is no such thing as a "minor procedure" for these guys when anesthesia is involved. Andrew also experienced emergence delirium last time, so the anesthesiologists had a plan in place for that, too. He was given some oral medication to make him loopy and it. was. hysterical. He was basically drunk. He shouted "HEY, YOU!" like a belligerent frat boy at the nurses, ROARED his plastic dinosaurs, and flipped and flopped and rolled so much that we had to raise the bed rails. It was so funny, that it kept me from crying when they took him back for surgery. I wish someone would have recorded it. Next time. <br />
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Stethoscopes are weeEEeeeIrrRd when you're on the loopy medicine.</div>
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The surgery took about an hour. Doc told us the damage was deeper and worse than he had anticipated and that he believes Little may have some form of a healing disorder. We already figured that his body had attacked the stitches that should have dissolved last year, so it really wasn't that surprising to hear. Doc told us we had an extremely funny little boy. So that means he was awake when the doc came in and showed him his drunkenness. No emergence delirium this time, but it was still quite unpleasant. The pic below is from about an hour after he started coming around and you can see how unhappy he still was.<br />
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Recovering at home.</div>
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Playing Operation after his operation.</div>
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He had a drain tube in his incision that had to be gauzed and redressed quite frequently. Because of that, we couldn't bathe him (still can't for about another 48 hours) nor could we shower him for at least 72 hours. HE WAS STANK. At about hour 73, I put him in the shower. He hated every second of it and insisted I wrap him up like a burrito and lay him down so he could recover from the trauma of the shower.</div>
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Oh, and this happened the day after surgery. Thank God the closet door was open and caught the dresser before it could crush Andrew. He was standing over to the side, too, so those two things kept him from getting hurt. He said he was pulling open the drawers to check if everything was still in there. O....k.....? All of my wedding glassware was shattered. So that sucks.</div>
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Yes, I will be tethering it to the wall. What's really crazy is that I had just told Mister that morning that I tethered Little's dresser to his wall and Mister looked at me like was crazy. Well. </div>
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This was our one outing while he had the tube in. We were both going stir crazy and I needed to exercise. I can't sit around for 4 days, I just can't. </div>
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So yesterday, on his Duchenneversary, he had his drain tube removed. It wasn't bad at all, though he'd disagree with me. Only took about 30 seconds and now we don't have to go back to Vandy for a whole month!!!! </div>
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I took him to the zoo to reward him for being so brave.</div>
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I hate goats. HATE. They are what I believe Satan would look like on earth. But, it was for him, not me, so I went into the nasty petting area so he could touch ALL the goats.</div>
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I want you to look at this one. Like REALLY look at it.<br />
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See what I mean?<br />
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He loved the flamingos. We must have watched them for 15 minutes. I was so bored. He was not.<br />
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We were flagged down at the meerkat exhibit by a family who wanted to learn about his DAFOs (feet) and later by a PT who wanted to learn about his Kiwi. I knew she was in the field when she could tell right away that it wasn't your average stroller. Regular folks can't ever tell, they just think its a really cool stroller. We can't go <em>anywhere</em> unnoticed. It's frustrating sometimes. I mean, everystinkingwhere we go, we attract attention. There is never a "we snuck in the back and slipped out unnoticed when it was over" situation for us. Everything is an <em>event</em>. I'm used to it, mostly, since that's how it's been for me for as long as I can remember, but dang it gets tiring when I just want to have a few hours with my son, left alone. That's selfish, I know, and it's a part of my personality that I constantly struggle with. I may seem quite extroverted to those around me, but I'm not. I would much rather be left alone than approached spontaneously. I am moody and I am aware of it. If I'm in a friendly mood or in a situation that is set up for me to entertain, then bring on the attention. But if I'm just trying to blend in and be normal, I may not (ok WILL not) greet you with a big ole sincere smile. I was able to help those people out by letting them learn about DAFOs and how to obtain them for their son and the PT got to test out the stroller in person before ordering one for a client, and that's why I'm here. I get that. I just fight it sometimes.<br />
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After the zoo, we went to a back to school cookout with some friends from church. From there, Andrew and I attended a friend's baptism - which is ALWAYS an awesome way to end the night.<br />
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Anyway, that's the story of what we did on his 3rd Duchenneversary and how we forgot all about it until the next day. I hope I have many more years like this instead of remembering and allowing it to poop on the whole day.<br />
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<br />Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com1tag:blogger.com,1999:blog-6711926069563284329.post-84278486119488383432014-06-25T10:44:00.000-07:002014-06-25T10:45:50.354-07:00Since When Does God Only Give Special Kids to Special People?As the mother of a child with a failing body, I am often the recipient of phrases like these:<br />
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I get tagged in them on Facebook, I get them sent to me as pins on Pinterest, and I have them said to my face in reaction to learning about my son. These things are said to me as compliments and encouragements. I am well aware that people are dumbfounded when hearing about Duchenne and learning what horrific things this disease is going to do to my son and sentiments like the ones above are the only things they can manage to squeak out in reply. And let's be honest - those phrases are INFINITELY BETTER than most of the crap people blurt out. One day I will do a "You Won't Believe What People Have Said to Me" about my son post. I am definitely thankful for the responses that are positive and loving like these three seem to be. I get the intentions behind the words. I do. But these phrases are so very <b>FALSE</b>.<br />
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~God only gives special children to special people~</div>
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Since when does God only give children with special needs to "special" people? Children with mental and physical issues show up in families who can't handle them ALL THE TIME. How often do we hear about children with disabilities who are abused and neglected by their families? What about <a href="http://www.cbc.ca/news/canada/compassionate-homicide-the-law-and-robert-latimer-1.972561" target="_blank">Tracy Latimore</a>, who was killed by her own father because of her cerebral palsy? What about<a href="http://blogs.phoenixnewtimes.com/valleyfever/2012/06/joshua_carlena_pinkerton_murder.php" target="_blank"> Joshua and Carlina Pinkerton</a>, who kept their disabled brother locked in a cage with a litter box? Are the Latimores and Pinkertons considered "special"? If so, then PLEASE stop putting me in that box! This one is such a backhanded compliment. It's like saying I deserve a handicapped child. No one <i>deserves</i> to have a son with Duchenne. Sure there are terrible adults in the world who deserve to suffer in the ways that Duchenne will cause Andrew to suffer (child molesters, etc), but revenge is for the Lord and no child deserves to be born with it.</div>
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~God gives his hardest battles to his strongest soldiers~</div>
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No. Nooooooooonononono. If this was true, no one would ever give up and walk away from their families because of their inability to come to terms with a loved one's diagnosis. No one would ever become an addict or alcoholic to numb the pain of watching their children suffer. Did you know that in marriages where a child is born with special needs, the likelihood of divorce is <i>double</i>? There are plenty of "soldiers" who are not strong enough for the battles these children bring. I know too many families where one parent has run away or is actively denying there is anything "wrong" with their child because they are too weak to pull on their big kid chonies and face the life that comes with a diagnosis to believe this one. In fact, I have to make a conscious effort not to laugh/scoff whenever this one gets thrown my direction. </div>
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~God will never give you more than you can handle~</div>
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WRONG AGAIN. God will absolutely give you more than you can handle. What this sentiment should actually say is this:</div>
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God gives us PLENTY more than we can juggle on our own. Our plates get more and more filled as life goes on and often, we spill those plates all over the ground. It is up to us to turn to the Lord so that He can get us through. We are not omniscient. We are not more powerful than our demons on our own. God is. </div>
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Philippians 4:13 does not say "I can do all things." Nowhere in the Bible does God say "Go on, you got this one all on your own. Jump in there, bro." Instead, He says that He will go with you. God will fight our battles and handle our lots for us. </div>
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<span style="color: blue;"><b>Psalm 55:22, "Cast your burdens upon the Lord and He will sustain you."</b></span></div>
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<span style="color: blue;"><b>Matthew 11:28, "Come to me, all you who are weary and heavy laden, and I will give you rest."</b></span></div>
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<span style="color: blue;"><b>Isaiah 46:4, "I am He. I am He who will sustain you. I have made you and I will carry you. I will sustain you and I will rescue you."</b></span></div>
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It's up to you to turn to Him and cast your burdens upon Him. It is not me, but God through me that I am able to keep going while knowing all too clearly what Duchenne is going to do to my son. It is not because I'm "special" or stronger than or in any other way more deserving of a child like Little than any of the rest of you; I just got one. What I choose to do with him and his disease is on me. I can flounder around and live in distress over things to come or I can call upon the Lord to quiet my soul. I <i>choose</i> to lay my son's disease at His feet and rely on Him to take care of us. I sleep soundly at night, knowing that when the DMD robs Little of his life, God will make him whole again for eternity. This life - this battle- is temporary. What is waiting for us on the other side - THAT is eternal. </div>
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So instead of tagging me in every facebook or pinterest pin that calls me out as special or deserving of a child with special needs, think of me when you see ones like these, please!</div>
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Oopsie! How did that one get in there? *smirk*</div>
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Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com1tag:blogger.com,1999:blog-6711926069563284329.post-75000436142051633652014-04-27T06:19:00.000-07:002014-04-27T06:24:39.325-07:00Took me 32 Years to Have the Guts...to sing in front of people. I'm 33, btw, but last year was my first, so that's where the 32 comes in. I've sang in large groups, like in my high school's musicals and I've sang tiny snippets solo for auditions in closed rooms with only like 6 people in them, and once in the 8th or 9th grade I took the lead on an old country song in choir, but the whole choir was backing me up - but to this scale - 32 years. <br />
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Last year, my preacher's wife, Beth, asked me to sing in a trio for our church's ladies' day. She asked me in front of 10 or so others at a planning meeting, so I felt like I <i>had to</i> say yes. My head started spinning and I believe I threatened to punch the girl next to me (under my breath) for volunteering my name, and I immediately regretted my decision. A few days later, I learned that we were to take turns leading singing for the day, also. AS IN UP ON STAGE, BEHIND THE PULPIT, INTO THE MICROPHONE WITH EVERYONE STARING AT/HEARING/FOLLOWING MY LEAD. I was terrified.<br />
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Through our weeks of practice, I got pretty comfortable with the trio idea, but leading singing was the thing that made my knees shake. In fact, the two nights before, we took turns at the podium, singing the songs we had picked to lead while the other ladies worked on decorations, was scary. Just standing up there was daunting. It definitely took a bit of the edge off, though, to have faced the rows of chairs a few times before the actual day. <br />
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We all got through it just fine, thanks to prayer, deep breathing, and a few minor freak outs in the ladies' room, and I ended up being SO GLAD that Beth asked me to help. In fact, I enthusiastically said "yes" when she asked me to head the music for this year's event. Last year, I wouldn't allow anyone to record us performing, this year - I did it myself and I'm sharing it here. That's proof of how much the three of us grew in our confidence and comfort. I almost got Desiree to lead a few songs, which is pretty far forward for her, in terms of stage fright. Next year......right, Desi? <br />
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I had so much fun with it this year. I was anxious beforehand, but I knew from last year that I would be just fine about halfway through the first song. I started off with "Awesome God" (you know, "Our God is an awesome God, He reigns from Heaven above...) because it was super familiar and easy to sing. The one I was a little afraid of was "It is Well". Our theme was Be Still and Know, so I picked this one because of what it means to me. Any of you who have ever been under the song leadership of Tom Chapin know what I'm getting to; it was the song that the congregation started to sing as I (and so many others through the years) came up out of the water when I was baptized. This song represents the very first moment that I was still and knew God. I got through the introductory words and the whole song without flinching, so that was a load off. The most powerful part of that song for me is the line that goes:<br />
"my sin, not in part but the whole -<br />
is nailed to the cross,<br />
and I bear it no more.<br />
Praise the Lord, praise the Lord!<br />
O! My soul!"<br />
I usually get that 'here it comes' tickle in the ball of my nose and my voice starts to crack.<br />
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Turns out that praise through song is where I feel the most connected to God - the most right within my heart. You would think it would be through traditional prayer, but I am easily distracted. My mind never stops running, so I don't always get to keep that proper state of mind during a prayer. In song, though, I can focus. I know that He doesn't care what I sound like or if I trip over the lyrics. He is wholly receiving my joy, gratitude, and prayer through the outpouring of my soul through the melody. I feel every word I sing, and I know I am conveying that to God. Sometimes when I pray at night, a relevant hymn will come to my mind and I usually just go with it. I sing. It doesn't matter that I didn't write the words that I am giving to His ear, it only matters that I mean them.<br />
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Here are two of the songs we did. I'm the one in the pink pants, singing alto, Whitney White is the one in khakis singing a ridiculously high soprano1, and Desiree Foster is in jeans, singing the melodies.<br />
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Here is our arrangement (by me!) of "Sanctuary" mixed with "We Exalt Thee".<br />
** This one's my favorite.**<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/cZyTGfBu82M?list=UUShnPeA1DGE3pndBUmjZwEw" width="560"></iframe>
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And here is our version of "Still".<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/XWwnUfvrAwY?list=UUShnPeA1DGE3pndBUmjZwEw" width="560"></iframe><br />
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I leave you with the verse that our Ladies' Day was built around:<br />
He says "Be still and know that I am God;<br />
I will be exalted among the nations,<br />
I will be exalted in the Earth"<br />
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I hope you all exalt Him today, whether in song, prayer, or action. Have a blessed Sunday!Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com2tag:blogger.com,1999:blog-6711926069563284329.post-13994975926803745872014-04-13T13:07:00.001-07:002014-04-13T13:07:14.257-07:00We Flexed One HECK of a Muscle!<div style="text-align: center;">
Yes, this is my annual Muscle Walk post. </div>
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This year was incredible. Ya'll absolutely blew me away. Our biggest group, our highest total raised, and our most donors ever. 48 of us showed up to Bridgestone Arena in Nashville, ready to walk in support of Andrew. </div>
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This whole group of caring, loving hearts showed up for <b>my</b> son. No one drove less than 45 minutes and some of them drove as many as 7 (and no, they aren't relatives) - all for Little. I can't articulate to you all how much that meant to me. We were the second or third largest group there. Our group was so large, that we couldn't fit in the photo area! We just squished together at our meeting point and handed my camera to a total stranger. :)</div>
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<span style="text-align: center;"> I am so touched that all of you came.</span><br />
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Over 100 people donated to our team this year! Our goal was $2630.01 (a penny more than we raised last year) and we took exactly $4,000 to Muscle Walk. That's not all, though! The donations kept coming in even after the walk and our grand total raised was:<br />
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<b><span style="font-size: x-large;">$4,375.00</span></b></div>
That's more than double my original goal!!!!!!!!!!!!!!!!!!!!!!!! I still cannot believe how much ya'll gave! Do you know how many hours of research that money will fund? How many wheelchairs that money can repair? That money WILL play a part in finding a treatment for Duchenne. THANK YOU, THANK YOU, THANK YOU! Out of 15 (or more) teams, we raised the 4th highest amount of money.<br />
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Little Boy was a crankpot for the whole thing.</div>
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This itty one is Ian. Ian is wearing Andrew's original Little's League onesie from our very first Muscle Walk. BTW - I need that back, Desi.</div>
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Linda Decker, our fearless leader!</div>
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And finally, he's excited (we were waiting for the elevator so we could we leave).</div>
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This will surely be my "year to beat" in both participants and funds. I know every year can't be like this one, and it will hold a special place in my heart for the rest of my journey with Duchenne.</div>
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With so many people on our side and in our corner, I have no doubts about how Little and I will be able to walk this path. Every night, when I pray with him before bed, I thank God for all of the people who love us and support us and I ask Him to let all of you know how much you are appreciated through my actions. I fail, miserably and often, but I hope that even when I'm being a snot, you all know just how much I genuinely appreciate you. I wrote a note of thanks to my congregation that my preacher read from the pulpit. Since all of Little's League doesn't attend my church, I want to share an amended version of it here. It's for all of you, not just my family at Barker's Mill.</div>
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<i>I want to thank you all from the bottom of my heart. You're outpouring of love and support for me and my son was never more evident to me than at this year's Muscle Walk. To the 48 of you who showed up to walk for Andrew, I am humbled and blessed to call you our League. When the cure for my son is finally discovered, it will be because of you. Thank you.</i></div>
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<i>Katherine</i></div>
Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com0tag:blogger.com,1999:blog-6711926069563284329.post-75288194496513875682014-01-06T11:08:00.003-08:002014-01-06T11:08:41.878-08:00Adaptive Equipment Thus Far (and tips on how to procure your own)Little Bit is in his last few days of the terrible, horrible, no good, very bad threes. I have my fingers and toes crossed that the fours will be better. In his short little life thus far, he hasn't needed too many pieces of adaptive equipment. I thought I'd share them all here, along with how we went about procuring them, in the hopes that it helps someone else out in figuring out how to aide their special needs tot.<br />
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<em>***Here is my mandatory disclaimer stating that I am not a physician or physical therapist and am in NO WAY qualified to diagnose or recommend treatment options for anyone's child! I am simply putting out there what we have used and how it has helped Little for you to use as a reference or inspiration or completely ignore or to use however you see fit.***</em><br />
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1. <a href="http://hiphelpers.com/" target="_blank">Hip Helpers:</a> spandex shorts with a sewn up seam in the center to tighten up hypotonic hip joints. He wore these for a few months when he was just about a year old, at the suggestion of his physical therapist. Andrew sat wide legged, with his legs out in a v and these helped to bring his legs together closer to regular hip distance. They can also help with w sitting and hip rotation in babies with hip abduction. I did not go through insurance for these, as they were only $16 per pair. In this picture, Little is wearing them in a size C. I still have them, if anyone needs a pair in that size. Click the link above to make sure your baby needs a C and check with his/her pediatrician or physical therapist to see if these are a good fit for your child and let me know via e-mail (<a href="mailto:LittleFeedback@hotmail.com">LittleFeedback@hotmail.com</a>) or facebook (link on the right) or by leaving a comment below.<br />
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2. <a href="http://www.dafo.com/products/dafo-3-5/" target="_blank">Cascade 3.5 D.A.F.O:</a> He got fitted for these when he was about 13 or 14 months old. We were able to get them through our insurance via primary care physician's referral to a pediatric orthopedist. Cascade makes many different dafos and the 3.5 is the model that both his PT and his Ortho agreed was best for him due to his hypotonia and supination. Vocabulary lesson time (HOORAY!);<br />
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<span><strong><span style="font-size: large;"><span id="hotword" name="hotword" style="color: #9999ff; cursor: pointer; text-decoration: underline;">hypotonia</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">hy·po·to·ni·a</span></span></strong> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">(hī'pō-tō'nē-ə)</span> </span><br /><i><span id="hotword"><span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">n.</span> </span></i><br />
<i><span></span></i><span id="hotword"> <span id="hotword" name="hotword">A</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">condition</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">in</span> </span><a href="http://dictionary.reference.com/browse/which">which</a><span id="hotword"> <span id="hotword" name="hotword">there</span> <span id="hotword" name="hotword">is</span> <span id="hotword" name="hotword">diminution</span> <span id="hotword" name="hotword">or</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">loss</span> <span id="hotword" name="hotword">of</span> <span id="hotword" name="hotword">muscular</span> <span id="hotword" name="hotword">tonicity,</span> <span id="hotword" name="hotword">resulting</span> <span id="hotword" name="hotword">in</span> <span id="hotword" name="hotword">stretching</span> <span id="hotword" name="hotword">of</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword">muscles</span> <span id="hotword" name="hotword">beyond</span> <span id="hotword" name="hotword">their</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">normal</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">limits.</span> </span><br />
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<h2 class="me" data-syllable="su·pi·na·tion">
<span style="color: #8e7cc3;">supination</span> su·pi·na·tion</h2>
<sup></sup> <span class="pronset"><span audio="http://static.sfdict.com/dictstatic/dictionary/audio/luna/S11/S1142900.mp3" default="http://dictionary.reference.com/audio.html/lunaWAV/S11/S1142900"></span> <span class="show_ipapr" style="display: none;"><span class="prondelim">/</span><span class="pron">ˌsu<img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" />pəˈneɪ<img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" />ʃən</span><span class="prondelim">/</span> <a class="questionmark" href="http://dictionary.reference.com/help/luna/IPA_pron_key.html" target="_blank"></a> <span class="pron_toggle" style="display: inline;">Show Spell</span></span><span class="show_spellpr" style="display: inline;"><span class="prondelim">[</span><span class="pron">soo-p<span class="ital-inline">uh</span>-<span class="boldface">ney</span>-sh<span class="ital-inline">uh</span><img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" /><img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" />n</span><span class="prondelim">]</span> <a class="questionmark" href="http://dictionary.reference.com/help/luna/Spell_pron_key.html" target="_blank"></a> <span class="pron_toggle" style="display: inline;"> </span></span></span> <br />
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<span class="pg"><span id="hotword"><span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">noun</span> </span></span> <div class="luna-Ent">
<span class="dnindex"><span id="hotword"><span id="hotword" name="hotword">1.</span> </span></span><span id="hotword"><span id="hotword" name="hotword">rotation</span> <span id="hotword" name="hotword">of</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">hand</span> <span id="hotword" name="hotword">or</span> <span id="hotword" name="hotword">forearm</span> <span id="hotword" name="hotword">so</span> <span id="hotword" name="hotword">that</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword">palmar</span> <span id="hotword" name="hotword">surface</span> <span id="hotword" name="hotword">is</span> <span id="hotword" name="hotword">facing</span> <span id="hotword" name="hotword">upward</span> <span id="hotword" name="hotword">(opposed</span> <span id="hotword" name="hotword">to</span> </span><a href="http://dictionary.reference.com/browse/pronation" style="font-style: normal; font-weight: normal;">pronation</a><span id="hotword"> ). </span></div>
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<span class="dnindex"><span id="hotword"><span id="hotword" name="hotword">2.</span> </span></span><span id="hotword"><span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">a</span> <span id="hotword" name="hotword">comparable</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">motion</span> <span id="hotword" name="hotword">of</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword">foot,</span> <span id="hotword" name="hotword">consisting</span> <span id="hotword" name="hotword">of</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">abduction</span> <span id="hotword" name="hotword">followed</span> <span id="hotword" name="hotword">by</span> <span id="hotword" name="hotword">inversion.</span> </span></div>
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<span class="dnindex"><span id="hotword"><span id="hotword" name="hotword">3.</span> </span></span><span id="hotword"><span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword">position</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">assumed</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">as</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">the</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">result</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">of</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">this</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">rotation.</span> </span></div>
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He began wearing them every time we wanted to try to get him to walk and once or twice per day for an hour to stretch. He no longer walks in them, but we are still using the 3.5s (in a larger size, of course) at home to stretch his calves and feet when they are particularly tight.<br />
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The casting process. Look at that little squishy baby!!!!!<br />
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Unfortunately, they don't stop wee ones from tipping over.</div>
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Finding shoes to fit over these suckers can be difficult and expensive. I think Little was in a size 4 shoe in these pictures but those New Balance were a size 6 double wide. I got them at Sears. You could also go the route of the <a href="http://www.orthomedics.us/Pages/Hatchbacks.aspx" target="_blank">Hatchback Shoe,</a> which is a special order shoe that has a hinge in the middle. The shoe bends open in the center so you can slide your AFO or DAFO in then pop the backside of the shoe up over it. Pro - easy to get on over the orthotic. Con: ugly and expensive. Unless of course, Hatchback wants to send me a pair for free to try out and review - then they're stylish and affordable! ;)</div>
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3. Potty Rail: </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuS_L4xcyD9ZOsVftK_2Kb9zTVFIcow4ewEyntEJ_JUyOzZPyRwpxWTcQw-atAAPYtQZmvJ9LmvagpbdI4t7mgSEKU9-7kb3w5Q7-mvwF_Qc-7CfdyOk54OHDuMI9xzOsA7NC1cX-d4Eo/s1600/527465_378418455571906_1927927084_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuS_L4xcyD9ZOsVftK_2Kb9zTVFIcow4ewEyntEJ_JUyOzZPyRwpxWTcQw-atAAPYtQZmvJ9LmvagpbdI4t7mgSEKU9-7kb3w5Q7-mvwF_Qc-7CfdyOk54OHDuMI9xzOsA7NC1cX-d4Eo/s1600/527465_378418455571906_1927927084_n.jpg" height="640" width="426" /></a></div>
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Built for him by his Pappy. I wanted a seat he could sit down on and raise himself off of without help and without falling. This rail has been the perfect solution for him. If your child has weak thighs or balance issues and is unable to use the adaptive potty seats that fit over a regular toilet (Little is unable to walk up the ladder type steps and then turn himself around on the skinny platform on the medical potty seats available), you might consider something like this. Inexpensive and easy to make! His school even had one made just like it to accommodate him in the bathroom located in his classroom. </div>
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4. Tiger Helmet: to show off fierceness </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiClSrqfrL-_jzfi9tQYpSGpRFLBXE91OX7KZO7WuYR3Apo-Ym5AEVnbkIT3QID68rUU1fdAFFVIxeBP5xQSUv_Zc7EISiCvQ8hFX-llBOGv_KIVIb2UMss0Jcb0ehWH2goag7p7ruUkM/s1600/318160_10150269438365983_2810543_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiClSrqfrL-_jzfi9tQYpSGpRFLBXE91OX7KZO7WuYR3Apo-Ym5AEVnbkIT3QID68rUU1fdAFFVIxeBP5xQSUv_Zc7EISiCvQ8hFX-llBOGv_KIVIb2UMss0Jcb0ehWH2goag7p7ruUkM/s1600/318160_10150269438365983_2810543_n.jpg" height="640" width="426" /></a></div>
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Kidding, of course.</div>
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5. <a href="http://www.babybjorn.com/us/products/baby-carriers/" target="_blank">Baby Bjorn:</a> because they are an AMAZING company with an equally amazing product. You can read about how we got our grubbies on this one by checking out the post I wrote at the time - <a href="http://homemadetatertot.blogspot.com/2011/10/ergomaniac.html" target="_blank">ERGOmaniac</a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWSN73RRiEmTE71P25Eu5Q3qtwe8EBBQJWXnAbJYBepw8F1Tyb1PmggMqV5vofKddZAYqQDtBUJHmPWqV3vEQbVmRZat3jNfBWBy4DFqhoo2n6arxv1a6IEo3Z8-oKKLuB2tBtTmW5gL8/s1600/328382_10150324315210983_2038199528_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWSN73RRiEmTE71P25Eu5Q3qtwe8EBBQJWXnAbJYBepw8F1Tyb1PmggMqV5vofKddZAYqQDtBUJHmPWqV3vEQbVmRZat3jNfBWBy4DFqhoo2n6arxv1a6IEo3Z8-oKKLuB2tBtTmW5gL8/s1600/328382_10150324315210983_2038199528_o.jpg" height="426" width="640" /></a></div>
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When Little outgrows it, I will be passing it along to another family in need. I haven't decided how I'll choose - but I'm thinking some kind of contest.</div>
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6. Handcuffs: because, well, toddlers are jerks.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXYJtn1sqFH-cNt_i1c5OcmX0VbhMV1z2rdDRMwdAd-C2kthc7dp7XHpnrqG9PTvh-Ol5dQOw21TwCiahpI87yTzbI5M1uHGuD57D0Utxe1iqKBn-HLEJ1wJTs84kMFO5dda0vh91Hah4/s1600/880_10151293734190983_1325342528_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXYJtn1sqFH-cNt_i1c5OcmX0VbhMV1z2rdDRMwdAd-C2kthc7dp7XHpnrqG9PTvh-Ol5dQOw21TwCiahpI87yTzbI5M1uHGuD57D0Utxe1iqKBn-HLEJ1wJTs84kMFO5dda0vh91Hah4/s1600/880_10151293734190983_1325342528_n.jpg" height="426" width="640" /></a></div>
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Again, kidding. Don't call CPS.<br />
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7. <a href="http://www.adaptivemall.com/stse.html" target="_blank">Special Tomato Height Right Chair:</a> This is a chair we use in the cafeteria at school. It took the place of old ratty booster seat that was tethered to a scoop back chair. The Tomato allows Little to sit at the lunch table with the rest of his class and not feel like he is in a "baby seat" or high chair. The padding all comes off if I need to wash it and the foot plate and seat are adjustable. I was able to get this 100% paid for by my insurance through a referral from his PCM. The referrals necessary to his insurance company were to a medical supply company (Pennyrile Home Medical in our case) who came out to the house and took his measurements, recommended products, and wrote their own referral paperwork. That paperwork and a second referral from our PCM written out for this specific chair were sent into our insurance company who then approved the order. After word of the approval, the medical store then places the order for the chair. It only took about two weeks for it to arrive.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnIB-rnp8dwXbIQ4rKfy7VZk-c3dW6cX4sDdBK9ogPgBuz3nZdr9XO88R8HkaGX3SzIruhjxR_rq8x-mqsx8Rbyq0a_qlXjoOId6g4O1WEUGyIMdR8GAlaQBqHR1Cbcjb7fxMCmazcyiw/s1600/1476211_573945216019228_1092960947_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnIB-rnp8dwXbIQ4rKfy7VZk-c3dW6cX4sDdBK9ogPgBuz3nZdr9XO88R8HkaGX3SzIruhjxR_rq8x-mqsx8Rbyq0a_qlXjoOId6g4O1WEUGyIMdR8GAlaQBqHR1Cbcjb7fxMCmazcyiw/s1600/1476211_573945216019228_1092960947_n.jpg" height="640" width="640" /></a></div>
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8. <a href="http://www.adaptivemall.com/strolstylwhe.html" target="_blank">Ottobock Kiwi Pediatric Mobility Stroller:</a> This was procured the exact same way the Special Tomato Height Right Chair was. Keep in mind that the sun canopy and under carriage storage bag are both considered unnecessary and optional, so many times insurance will not cover them. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoipfJg6L6yE9PZxnv0TCBQOpcw_X6K92ErdlOs04bR8YPxUlaQ1uNws_BQQ6oIkTzY-nzC2chBYbtNDrHmmck3fiZGKZ4R3z6VCw3EeonrrlfLXjWFl8UEGFqyXsXbXJ-tomvDCicx90/s1600/1557641_581133341967082_1548193034_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoipfJg6L6yE9PZxnv0TCBQOpcw_X6K92ErdlOs04bR8YPxUlaQ1uNws_BQQ6oIkTzY-nzC2chBYbtNDrHmmck3fiZGKZ4R3z6VCw3EeonrrlfLXjWFl8UEGFqyXsXbXJ-tomvDCicx90/s1600/1557641_581133341967082_1548193034_n.jpg" height="640" width="640" /></a></div>
Andrew has outgrown our umbrella stroller, which doesn't have enough support for him anyway. We went to BabiesRUs and tried out a few of their displays and he was too wide or long for all of them! Little is TINY - so I'm not sure what the deal was there. The ones I liked all had oval or rectangular style push bars instead of handles, so I was excited to see that option on most of the pediatric strollers. I like this particular one because it looks like exactly what it is - a stroller. Some of the other styles just looked so...medical. We'll get to that one day, but for now, I wanted one that looked like a really nice stroller and that's exactly what I got. <br />
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It is super smooth to push; even Andrew has no trouble with it. I think my favorite feature is the directional push bar - I can push him in the usual forward facing direction, or if I get backed into a corner or he fal<span class="text_exposed_show">ls asleep, with one quick push of a button, I can flip the handle bar over the seat to push him in the opposite direction (seat facing me). That will definitely come in handy exiting crowded elevators where there is no room to turn the stroller around! Plus if he is asleep, I can pull down the sun canopy to block people out and keep him facing me for privacy.<br /><br /> The front wheels swivel or I can lock them for going over gravel/cobblestone. There is a zippered pouch on the back plus an undercarriage bag. The only thing it is missing is a cup holder (which I've already added) and unfortunately it takes up my entire trunk some have to remember to leave it at home when I grocery shop. Anything requiring the stroller and luggage or purchases or anything else will mean I'll have to use my husband's car, which means switching over the car seat.<br /><br /> But I am so SO grateful and excited to have it!!!</span><br />
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<span class="text_exposed_show">9. <a href="http://www.dafo.com/products/dafo-4/" target="_blank">Cascade 4.0 D.A.F.O.:</a> this is the one we'll be getting shortly (as in the very next time we go to his PCM). Andrew's rotation has switched from supination to pronation as his ankle muscles weaken. <br />
<h2 class="me" data-syllable="pro·na·tion">
<span style="color: #8e7cc3;">pro·na·tion</span></h2>
<sup></sup> <span class="pronset"><span audio="http://static.sfdict.com/dictstatic/dictionary/audio/luna/P08/P0827600.mp3" default="http://dictionary.reference.com/audio.html/lunaWAV/P08/P0827600"></span> <span class="show_ipapr" style="display: none;"><span class="prondelim">/</span><span class="pron">proʊˈneɪ<img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" />ʃən</span><span class="prondelim">/</span> <a class="questionmark" href="http://dictionary.reference.com/help/luna/IPA_pron_key.html" target="_blank"></a> <span class="pron_toggle" style="display: inline;">Show </span></span><span class="show_spellpr" style="display: inline;"><span class="pron">proh-<span class="boldface">ney</span>-sh<span class="ital-inline">uh</span><img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" /><img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" />n</span></span></span><br />
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<span class="pg"><span id="hotword"><span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">noun</span> </span></span> <div class="luna-Ent">
<span class="dnindex"><span id="hotword"><span id="hotword" name="hotword">1.</span> </span></span><span id="hotword"><span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">rotation</span> <span id="hotword" name="hotword">of</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword">hand</span> <span id="hotword" name="hotword">or</span> <span id="hotword" name="hotword">forearm</span> <span id="hotword" name="hotword">so</span> <span id="hotword" name="hotword">that</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword">surface</span> <span id="hotword" name="hotword">of</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword">palm</span> <span id="hotword" name="hotword">is</span> <span id="hotword" name="hotword">facing</span> <span id="hotword" name="hotword">downward</span> <span id="hotword" name="hotword">or</span> <span id="hotword" name="hotword">toward</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">back</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">(opposed</span> <span id="hotword" name="hotword">to</span> </span><a href="http://dictionary.reference.com/browse/supination" style="font-style: normal; font-weight: normal;">supination</a><span id="hotword"> ). </span></div>
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<span class="dnindex"><span id="hotword"><span id="hotword" name="hotword">2.</span> </span></span><span id="hotword"><span id="hotword" name="hotword">a</span> <span id="hotword" name="hotword">comparable</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">motion</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">of</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">the</span> <span id="hotword" name="hotword">foot</span> <span id="hotword" name="hotword">consisting</span> <span id="hotword" name="hotword">of</span> <span id="hotword" name="hotword">abduction</span> <span id="hotword" name="hotword">followed</span> <span id="hotword" name="hotword">by</span> <span id="hotword" name="hotword">eversion.</span> </span></div>
<div class="luna-Ent">
<span class="dnindex"><span id="hotword"><span id="hotword" name="hotword">3.</span> </span></span><span id="hotword"><span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword">position</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">assumed</span> <span id="hotword" name="hotword">as</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">result</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">of</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">this</span> <span id="hotword" name="hotword">rotation.</span> </span></div>
<div class="luna-Ent">
<span class="dnindex"><span id="hotword"><span id="hotword" name="hotword">4.</span> </span></span><span id="hotword"><span id="hotword" name="hotword">any</span> <span id="hotword" name="hotword">similar</span> <span id="hotword" name="hotword">motion</span> <span id="hotword" name="hotword">of</span> <span id="hotword" name="hotword">the</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">limbs</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">or</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">feet</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">of</span> <span id="hotword" name="hotword" style="color: #333333; cursor: default; text-decoration: none;">animals.</span> </span></div>
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He will wear these while at school or whenever he will be doing any kind of extended walking. I have no idea what size shoe he'll have to wear over them, but I can bet it'll be another double wide. We'll be headed over the brace shop for yet another fitting in a few weeks. He's an old pro at them by now. <div class="luna-Ent">
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10. Physical Therapy and Occupational Therapy: really, I should have listed these first since he's been doing them since he was 13 months old. We started off with our states free birth to three, early intervention program called Kentucky 1st Steps. His PCM put in a referral and KY 1st did the rest. They came out to my home for every evaluation and session from the time he was 13 months to 3 years old. At 3, 1st Steps turns you over to the school system for services. Andrew has been in preschool since Jan 2013, a few days after his third birthday. He receives 30 minutes of PT and 15 minutes of OT each month. That is not enough for him, but it is all the state can provide. Because of that, our incredible therapists kept him on as a private client (again, try your insurance - the worst they can do is deny you. You'll never know unless you submit a referral). He now receives PT twice per week for 45 min each time and OT once per week for an hour on top of what the school can do for him. All four of his therapists are on the same page - I even brought his private PT to his IEP meeting at the school last month. The referrals constantly have to be renewed, and evaluations resubmitted, but every bit of paperwork and waiting room time is worth it to have the services he needs. </div>
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And that's it so far! I think we're incredibly fortunate in that we haven't needed a whole lot yet and that we've been able to get everything we have needed pretty easily. I know how blessed we are to have this amazing insurance plan through the Army and I also know that we will not have it forever. In fact, it may be coming to an end pretty soon, but that's a blog post for another time. I hope I've helped some of you out a little bit, or given you a bit of insight for what services and equipment you might consider for your son or daughter in the future. I am always on the lookout for new products to make Little's life a bit easier ( I choose to be proactive) and as I come across them, I will continue to pass the info on to you.</div>
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I hope you all had a wonderful holiday season and I wish you a year full of blessings! Put your faith in Him and God WILL provide! Proverbs 3:5- "Trust in the LORD with all thy heart, and lean not on your own understanding: in all your ways acknowledge Him, and He shall direct your paths." </div>
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*thank you, Pintrest for the sweet tree/car idea*</div>
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Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com8tag:blogger.com,1999:blog-6711926069563284329.post-54575837149972435662013-11-13T12:57:00.000-08:002013-11-18T19:56:18.323-08:00Gratitude in the Face of DisappointmentIt's November; that means it's time for FB's annual 30 Days of Gratitude status updates. This is the second year I've joined in. I think it's good to take a minute and express your thankfulness about the blessings in your life. We have SO much to be thankful for. God has been so good to us. <br />
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So today makes my second post in a row about derailed hope in the Duchenne community. Last time, I wrote about how GSK's phase III trial on the exon skipping drug, Drisapersen, failed to meet it's endpoints. Well today, I write to let you know that the competing pharmaceutical trial, Sarepta's exon skipping drug eteplirsen, was just denied accelerated approval from the FDA. In a nutshell, the FDA thinks the trials were too small and the data not strong enough to move forward on. They've asked Sarepta to regroup and try a new Phase III trial with a larger group of boys and place half of them on a placebo. Sigh. Duchenne is such a rare disease, that it may not be possible to find that large a number of boys who qualify. The second problem is that no one will want their child to be in the placebo group. So we've really been punched in the ribs on this one. It will take years longer now to get this drug out to all the boys who need it. Years that we don't have. This is a rapidly progressively deteriorating disease.......the math doesn't add up. <br />
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The FDA basically just told us all that most of our boys are going to die or have muscles that are too wasted to be helped by the time this drug is available (if it is ever available). So in the wake of all these setbacks and heartaches, what am I thankful for today? <strong>THE FDA</strong>.<br />
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Yep, those guys. They have an incredibly difficult job, seeking out which drugs to give the green light to and which ones to send back to the lab. I don't envy the FDA for a minute. I applaud them for doing the best they can with the data they are given. I may not always agree with them, but I don't work there. I don't have a full grasp of what approving a drug entails. What I do know is that the FDA hasn't denied eteplirsen because they hate people with muscle disease, they've denied it because it didn't meet the criteria they judge new therapies by. This is not a forever denial, it is a "not now, go back and try again and give us new data first" denial. Unfortunately, with Duchenne, it means more boys will pass and more boys will decline. This delay may quite possibly cause Little to progress too far to benefit from the therapy by the time his formula is ready. And that sucks. Big fat hairy donkey balls. But if regrouping and reformatting the trials are what ultimately lead to drug therapies that save future DMD kids - well then. <br />
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I was told 2 years ago that my son would never get better, that he'd die before he was legally able to buy his first beer. I've come to terms with that. I don't want it - but I understand that's the way this genetic condition plays out. I've accepted that my son will not lead the life I had envisioned for him while I was pregnant. The realist in me takes whatever glimmer of light is out there with a grain of salt. Yes, when things looked like they were working out for Andrew to be one who received a drug therapy formatted to his mutation, I got excited. I praised God. But my prayers have always said, "God, if it be Your will, then....." I have always known that these drugs might not come in time to save my son. If they ever do, I will dance with the joy of a thousand angels in my heart, but I will not survive this journey if I don't stay grounded and humbled. And today, with the news that none of those drugs have Little's name stamped on them at the moment, I still praise God. He has given me so much. He gave me Andrew. He is letting me keep him right now, when He could have allowed a miscarriage or a stillbirth to "ease" my life and heartache - save ME from a life with Duchenne. But instead He allowed my son to come to be. He is allowing me to love Andrew for as long as he is on this earth. How blessed am I?<br />
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And when the time is right, the formulas are right, and the data is there - the FDA will approve a therapy for Duchenne. I know something is coming, even if it is not in my son's lifetime. And I am grateful. <br />
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Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com1tag:blogger.com,1999:blog-6711926069563284329.post-49920987637968181402013-09-20T11:50:00.000-07:002013-09-20T11:50:54.669-07:00Back to the Drawing BoardOr to the lab, rather. This morning the Duchenne community was dealt a pretty crushing blow. Prosensa/GSK's Phase III trial of the exon 51 skipping drug, Drisapersen, failed to meet it's end points. What that means is that the boys on the drug showed no significant statistical improvements over the boys in the placebo group. <br />
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If you are completely lost, read <a href="http://homemadetatertot.blogspot.com/2012/03/building-bridge.html" target="_blank">Building a Bridge Part 1</a> and <a href="http://homemadetatertot.blogspot.com/2012/04/building-bridge-part-2.html" target="_blank">part 2</a>.<br />
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What this means for Pro044, the version of Drisapersen that is supposed to help Little, is still unknown at this time. The Phase III trial for that one was slated to start next fall. I don't know if they will go forward with it or not. I do know that they have discontinued dosing any of the boys in the 51 trial and are looking into it more to see if there may be a subset of boys who benefitted more than others.<br />
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It was with a very heavy heart that I read the news on Facebook today. This was the drug that most of us had pinned our hopes on. I know that it wasn't going to be a cure, but I had really hoped that it would be the drug that improved Little's quality of life. Worst case, the drug is abandoned all together ~ best case, they can reformulate it and start new trials. <br />
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There is still a similar drug out there in trials called Eteplirsen, by Sarepta Therapeutics. It is also an exon skipping drug targeted at 51. I am holding out some hope that this one fares better than Drisapersen. If so, then hopefully they will add in a formula targeted at the exon Little needs skipped but for right now, it is not on their list.<br />
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Although I am saddened by the failure of the drug trial, I am not defeated. When Little was diagnosed in 2011, we had the bomb dropped on us right then. Duchenne was introduced to us as an absolutely fatal, not even a treatment to help him slow it down, take your kid home and love him while you have him disease. So I already come from a place of quiet, reserved hope while still preparing for a life where no drug is viable in time for Little. Push along and do what I can to make sure his days are the best they can be, trusting in God to take care of him until the Duchenne sends him Home. Crossing my fingers that one of these labs unlocks the key to reversing muscle waste while still planning on the timeline of deterioration that Duchenne has always followed for every single one of its victims. Cautious optimism, if you will. I've always known that even if this drug did work, that it might not be available in time for my son. This may have been the biggest and brightest hope for a long term therapy for Andrew and the others, but it certainly isn't the only thing out there. There are many more drugs on the horizon, more labs working on research, and more people aware of this disease than ever before. I've got my fingers crossed for <a href="http://www.halotherapeutics.com/about-halo/" target="_blank">Halo</a> for one. Halo is working on HT-100, a drug that is intended to promote healthy muscle regeneration, diminish inflammation and the resulting damage to muscle, and decrease the scar tissue that forms in the muscles of children with DMD. Less scar tissue = more flexibility and less pain. Yes, please. As <a href="https://www.facebook.com/parentprojectmd?hc_location=stream" target="_blank">Parent Project Muscular Dystrophy (PPMD)</a> said today, "We have lost a battle, not the war".<br />
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I know some of you are thinking<span style="color: #6aa84f;"> "How can she still trust in God to take care of her son when He let this drug fail? She sure thanked Him for the discovery of the drug - where is He now?"</span> Well, it's simple. Its called faith. I have faith that God will take care of Andrew because he said He would. <br />
<em>"For I know the plans I have made for you" declared the Lord. "Plans to prosper you, and not to harm you, <strong>plans to give you hope, and a future.</strong> Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me, when you seek me with all your heart." Jeremiah 29: 11-13</em><br />
I still believe that the discovery of exon skipping therapies will be a gateway to curing all sorts of genetic disorders. Maybe not Duchenne, and that's okay. Disappointing, but okay. And maybe a drug therapy won't come at all during Little's lifetime, and that's okay, too. Again, disappointing, but as always, not my will but Thine. <br />
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I leave you with the hymn that always pops into my head during times like this ~ times of let down, times of dashed hope. Times where the future looks dark and scary and I feel helpless to save Andrew from his broken genes. Times when I need to remind myself that this life is temporary and what is waiting for us on the other side is full of grace and mercy. <br />
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<span style="color: blue;">When peace, like a river, attendeth my way, </span><span style="color: blue;">when sorrows like sea billows roll; whatever my lot, Thou hast taught me to say, it is well, it is well with my soul.</span><br />
<span style="color: blue;"></span><br />
<span style="color: blue;">Though Satan should buffett, though trials should come, let this blest assurance control, that Christ has regarded my helpless estate and hath shed His own blood for my soul.</span><br />
<span style="color: blue;"></span><br />
<span style="color: blue;">It is well with my soul.</span><br />
<span style="color: blue;"> </span><br />
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Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com0tag:blogger.com,1999:blog-6711926069563284329.post-56023011711214974552013-09-03T14:44:00.001-07:002013-09-03T17:39:27.611-07:00Totally EmmaSince the tone of my last post was less than upbeat, I thought I'd switch gears with this one. I can't think of a better topic to make everyone smile and cheer than one incredible little miss;<br />
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<em><span style="color: #a64d79; font-family: Georgia, "Times New Roman", serif; font-size: x-large;"><strong> Emma Wasson</strong></span></em> </div>
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Emma is the daughter of an old high school friend of mine, Kenny, and his wife Jerilyn. This may sound familiar to some of you, since I have talked about her and asked for prayers on her behalf before on Facebook. For the folks who don't know much about her, I'll give a little background.<br />
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This is from her CaringBridge page (<a href="http://www.caringbridge.org/visit/emmawasson" target="_blank">http://www.caringbridge.org/visit/emmawasson</a>)<br />
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<span style="font-family: "Courier New", Courier, monospace;">Emma Wasson was born Saturday, August 25 2012 at 4:12 a.m. She was induced at 38 weeks due to some heart rate decreases. Everything on ultrasound looked fine, but my doctor still had a "gut feeling" something was wrong. The doctor said it would probably lead to c-section because inductions at 0 cm dialated are not usually successful. Emma surprised us all! Mom went 0-10 cm dialated in less than 7 hours, pushed for an hour, and she was here! It was a stressful delivery because her heart rate kept dropping and it went so fast. She weighed 5 lbs 3 oz, 18 3/4 inches long, and had an apgar of 7.9. She appeared to be a healthy newborn. Two hours later while in the nursery getting her bath, she turned blue. They called in a pediatrician. The pediatrician said oxygen levels were not good and she heard a heart murmur. Emma was transferred to Arkansas Children's Hospital. Mom and Dad were released an hour later (6 hours after birth) to follow her. She was diagnosed with Pulmonary Atresia with Intact Ventricular Septum (PA-IVS). This particular type of heart defect is rare. This heart defect (present at birth) made her a candidate for a genetic disorder. Three weeks later she was diagnosed with Turner Syndrome, a genetic disorder affecting girls only due to a missing X sex chromosome. Only 1% of fetuses live to term with this genetic disorder. Only two people in medical journal history have had the above combination of disorders. Emma also had a coarctation of the aorta. This is rare because children usually do not live with disease on both sides of the heart. Emma developed chylous effusion soon after birth and the drainage tube caused a perforation in her bowel. This led to abdominal surgery. Emma has had 4 heart catheter procedures, one open heart surgery, and one abdominal surgery.</span><br />
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<span style="font-family: inherit;">Emma's odds of survival were slim - very slim. On more than one occasion, the Wassons had to make heart wrenching end of life care decisions. But every time the doctors have said "There is nothing more we can do", Emma has dug her heels in and won. She is one determined tot! To everyone's amazement, Emma grew stronger, beat infections and pneumonia, her kidneys, lungs, and heart began to heal, she started tolerating her feeds, and fought her way not only off of the "palliative care" list, but out of the hospital completely after 254 consecutive days. She has been home for 4 months now, with only a few short stays in the hospital since coming home! </span><br />
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<span style="font-family: inherit;">She (and her parents) has SO many people in her corner. Emma is a beautiful, miraculous proof of the power of prayer. This defiant little girl refused to follow the path that so many others with complicated genetic disorders sadly must follow and just celebrated her very first birthday. </span><br />
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I have been praying for this girl her whole life. Something about her story and the way her mother pushes forward each and every day - even in the darkest of hours - with her faith in God and hope in her heart just absolutely struck a chord in me. The way she writes about her journey is so real and raw and I am so grateful she has chosen to allow all of us into this world that she could have kept private. I am so inspired by Jerilyn and Kenny and the way they have soldiered through this incredible roller coaster ride Emma has taken them on this past year. They make me want to do better and be better for Andrew, whose medical care at the moment pales in comparison to Emma's. <br />
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Emma's parents have asked that everyone who can, consider donating one of two Tiny Love Mobiles to Arkansas Children's Hospital CVICU in honor of Emma's 1st birthday. There is a pink version and a green version.<br />
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Emma has the pink one and loves it. It has been with her through every hospital stay. You can find them for just over $20 at Target and I've even made it super easy for you, just click on a color for a direct link (<a href="http://www.target.com/p/tiny-love-take-along-princess-mobile-pink/-/A-13793288#prodSlot=dlp_medium_1_1&term=tiny+love+classic+mobile" target="_blank">pink</a> or <a href="http://www.target.com/p/tiny-love-on-the-go-mobile/-/A-12888404#prodSlot=dlp_medium_1_4&term=tiny+love+classic+mobile" target="_blank">green)</a>. They are also available at BabiesRUs, Albee Baby, Amazon, and Diapers.com.<br />
You can have them shipped to the hospital at: <br />
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Arkansas Children's Hospital </div>
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Attn: Volunteer Services</div>
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1 Children's Way, Slot 108 </div>
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Little Rock, AR 72202 </div>
The hospital is excited to see how many will be donated!<br />
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I just wanted to publicly wish sweet Emma a very VERY happy birthday and thank all of you who have also been praying for her and her parents. Please don't stop! The challenges for Emma, Kenny, and Jerilyn are not in the past. Emma continues to keep her parents and doctors on their toes with her medical conditions. But they've all learned to expect nothing less from their girl.<br />
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<em>Please keep Emma and Andrew both in your thoughts on Thursday, as they both have cardiology appointments that day. Prayers for good scans that show strong hearts for both of these precious babes!</em><br />
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*If you'd like to follow Emma on Facebook, her url is <a href="https://www.facebook.com/TotallyEmma" target="_blank">https://www.facebook.com/TotallyEmma</a> and her CaringBridge link is toward the beginning of this post. To learn more about Turner Syndrome, check out <a href="http://www.turnersyndrome.org/" target="_blank">http://www.turnersyndrome.org/</a> and to learn more about Pulmonary Atresia, you can find information on it at <a href="http://www.mayoclinic.org/pulmonary-atresia/">http://www.mayoclinic.org/pulmonary-atresia/</a> .Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com1tag:blogger.com,1999:blog-6711926069563284329.post-46661398685192135092013-08-13T15:44:00.001-07:002013-08-13T15:48:46.931-07:00It's My Party and I'll Cry if I Want toThere is an unwritten rule out there about Special Needs Moms and I feel the need to challenge it. You know, the one that says we have to be hopeful, strong, happy, and above it all at all times. The one that says we can't give in to a moment of weakness over what is looming in the dark (medically) for our children. The one that says any hint of sadness in our eyes means we must be spending all of our time dwelling in despair. The one that causes otherwise very nice and compassionate individuals to stick their foot in their mouth and bark out things like, "Don't be so negative, you have to stay positive" or worse, "This too shall pass" (pass? Did you really just remind me that my son is going to die? THANKS, ASSHAT.) Well guess what, guys? Positivity won't cure my son. I can be happy happy happy (yes, that's a Duck Dynasty quote) but it won't stop Little's muscles from deteriorating deteriorating deteriorating.<br />
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Who decided that I had to be Molly Friggin Sunshine every day? Where in the world does it state that I, as the mother of a child with a terminal condition, cannot ever grieve? <br />
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Why do you expect so much more from me than from yourselves?<br />
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I am an imperfect human. I have mood swings. I have bad days. I have a heart so full of love for my husband and child that the idea of something hurting either of them brings me to tears. I have heartstrings that can be yanked, and a soul that can be briefly crushed. I forget to "give it to God" sometimes. I hit the ground in sobs when horrible realizations about a life with Duchenne come rushing at me like a freight train. <br />
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This morning I was making coffee and out of nowhere, one of those DMD trains hit me. Smacked me right in the gut and took my breath away for a minute. I made the mistake letting it out and after the hugs and promises of prayer (BEST!) the scolding started to trickle in. "Stop ..... ....". "Don't ........." "You shouldn't....." Now I <strong>know</strong> these people meant well, but for whatever reason, when a mother like me has a moment of pain show through, people feel the urge to shake their finger at her. Why? Why can't I break down once in a blue moon? You're allowed to get upset about standing in an extra long line at Starbucks, but I'm not allowed to cry over the erosion of my son's legs? Punch yourself in the face.<br />
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Do you understand what Duchenne is? Do you understand that it <em>will</em> - not might, WILL - kill Little eventually? And by eventually, I don't mean when he's 78. I don't even mean when he's 48. Try 18. Or 14. Or 23. Do you fully understand what I mean by "In a wheelchair"? If you think that equates to just not being able to walk, then no, no you don't. Andrew will not just lose the ability to move his muscles, he will literally become a bag of bones. There will be no reaching over to scratch the mosquito bite on his elbow that is driving him crazy. He won't be paralyzed. He'll be non-ambulatory. There is a huge difference. A paralytic wouldn't even know he has an itch when bitten by a mosquito. One who is non-ambulatory will feel with the same intensity that we all do when we have one, he just won't be able to do anything about it. He will not just be rolling around on two wheels, he'll be in something like this: <br />
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All that gear on the back? Those tubes and wires are what will keep him alive as his respiratory system weakens and he can no longer breathe by himself and his heart fails. No, you didn't grasp the immensity of Duchenne, or you wouldn't have said what you said.<br />
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I know that sometimes, the offender says what they do because they are ignorant. Other times, they are caught off guard and sometimes, they genuinely have no idea how condescending or clueless they sound. I also know that sometimes the offender makes a stupid remark back to us because they are so uncomfortable with the topic that they just blurt out anything they can think of to end the conversation and run away. Things like:<br />
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"It will be okay" *Nope. It will never be "okay" that my son is losing his strength, little by little, each and every day.<br />
"Don't dwell on it" *Huh? Who decided I was dwelling there? Do you know me at all?<br />
"But that won't be Andrew" *I'm sorry, have you had a chat with God? Did He tell you Andrew would be the first person in the history of Duchenne to keep his muscles? <br />
"He'll get better, I just know it" *It's not a cold, folks, it's a genetic disorder. <br />
"You have to think positively" *See my Phil Roberston comparison above.<br />
"Maybe you'll be glad when......" *WRONG.<br />
"Stop being so negative" *Since when is an expressed moment of pain equal to a personality change?<br />
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Things that actually are helpful when I've sunk to my knees in prayer and tears:<br />
"I'm sorry" <br />
"I'll keep praying for you"<br />
"<span data-ft="{"tn":"K"}" data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0].[0]">That makes me sad, pisses me off, and gives me motivation to research, pray, and do anything I can, all at the same time" *Thank you, Marta - <strong>nailed it.</strong></span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0].[0]">"I love/care about/am thinking of you, Mister, and Little"</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0].[0]">A hug. You don't even have to say anything.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0].[0]"></span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0]"><span data-reactid=".r[5g67t].[1][4][1]{comment509751942438556_3289122}.[0].[right].[0].[left].[0].[0].[0][2].[0].[0]">Support. All we need in that hour of pain is your judgment free, unconditional support. I need you to realize that this</span></span></span> is a <em>moment</em> I am having, not a lifestyle change. It really pisses me off that some of you act as thought we need your permission to feel our feelings. I have to face the realities of this, spending every second on a puffy pink cloud of ignorance will not help any of us in the long run. Let me have my moment so that I can adjust to it and move forward. And I <em>will </em>adjust and carry on. I always do. My hope is in the Lord and so I cannot wallow in the darkness for long. He always lifts me up. Always. I have never been one to stay miserable and I don't foresee that changing. I do, however have my days when it lurks around for a while. This is a heavy disease. No one can get through it without tears, grief, or anger. I am allowed to take pause and consider what is happening to my son. This disease gives me the right to cry. And you? You have the right to lift me up or walk away. You do not get to pass judgment or criticism on a life you know nothing about.<br />
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So please remember - hug, love, support, prayer, and I will turn to Him and I will pull out of my sadness whenever it hits. I will settle back into hoping one of those treatments comes to fruition before it is too late for Little. I will figure out what the newest setback in his physicality means for us and go from there. Onwards and upwards, right Russell?Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com2tag:blogger.com,1999:blog-6711926069563284329.post-51217908180883060472013-07-10T06:16:00.000-07:002013-07-10T06:16:34.016-07:00Hope for Little<h1>
<span style="font-size: small;">Good things continue to move forward over in the Prosensa labs.</span></h1>
You may remember a little about exon skipping (and my sweet train track drawing) and how it could extend Andrew's life, but if not - or you just need a refresher, check out these two posts I wrote a while back before you continue on with this one:<br />
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<a href="http://homemadetatertot.blogspot.com/2012/03/building-bridge.html">http://homemadetatertot.blogspot.com/2012/03/building-bridge.html</a><br />
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<a href="http://homemadetatertot.blogspot.com/2012/04/building-bridge-part-2.html">http://homemadetatertot.blogspot.com/2012/04/building-bridge-part-2.html</a><br />
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Remember how I said that each different genetic mutation that results in Duchenne will require it's own specific formula/version of the drug to work it's magic on the boys? Andrew has a deletion mutation in exon 45. There is a chart that shows how to know what exon(s) need to be skipped for each mutation in my post above (building-bridge-part-2). So Andrew could benefit from skipping either exon 44 or 46. Well, this is from the <a href="http://prosensa.eu/home" target="_blank">Prosensa</a> website:<br />
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<a href="http://prosensa.eu/technology-and-products/pipeline/pro044"><span style="font-size: large;">http://prosensa.eu/technology-and-products/pipeline/pro044</span></a></h1>
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<h1>
PRO044</h1>
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<th class="cell-1" scope="col">Indication</th>
<th class="cell-2" scope="col">Compound</th>
<th class="cell-3" scope="col">Discovery</th>
<th class="cell-4" scope="col">Pre-clinical</th>
<th class="cell-5" scope="col">Phase I / II</th>
<th class="cell-6" scope="col">Phase III</th>
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<td class="cell-1">Duchenne Muscular Dystrophy (DMD)</td>
<td class="cell-2"><a href="PRO-044.php" title="">PRO044</a></td>
<td class="cell-3"><span class="done-100">100% finished</span></td>
<td class="cell-4"><span class="done-100">100% finished</span></td>
<td class="cell-5"><span class="done-20">20% finished</span></td>
<td class="cell-6"><span class="done-0"></span></td>
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<tr class="make_bigger" id="compound-1"><td class="cell-1"><a href="http://prosensa.eu/patients-and-family/Duchenne-Muscular-Dystrophy">Duchenne Muscular Dystrophy (DMD)</a> </td><td class="cell-2"><a href="http://prosensa.eu/technology-and-products/pipeline/pro044" title="PRO044">PRO044</a> </td><td class="cell-3"><span class="done-100"></span><br /></td><td class="cell-4"><span class="done-100"></span><br /></td><td class="cell-5"><span class="done-60"></span><br /></td><td class="cell-6"><span class="done-0"></span><br /></td></tr>
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Prosensa’s second product in development, PRO044, induces exon 44 skipping in the dystrophin gene and is intended for approximately 6% of all Duchenne Muscular Dystrophy (DMD) patients, including those with deletions of exon 43, exon 45, exons 38-43, exons 40-43, exons 42-43, and exons 45-54. The underlying chemistry and mechanism of PRO045 are similar to drisapersen. PRO044 is highly sequence specific minimizing the risk for off-target affects.<br />
PRO044 addresses a separate sub-population of DMD patients and is currently in a Phase I/II study in Europe to assess the safety and efficacy of the medication for DMD patients with a mutation around location 44 in the DNA for the dystrophin protein. We expect to complete in the second half of 2013. PRO044 has been extensively tested in a series of cultured muscle cells from patients with different relevant mutations, and in the hDMD mouse model.<br />
Details of the clinical trials, such as inclusion/exclusion criteria and trial sites, are posted on the website www.clinicaltrials.gov and all required approvals of authorities and ethics committees are granted. PRO044 has been granted orphan drug status in the European Union and the United States.<br />
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Yes, I've already cried about it. You just can't know how huge this is if you don't have a loved one (or have something yourself that is as-of-yet untreatable) with a disease like this. If you've never had to hear a version of the words "Your son isn't going to get better", then you get on your knees NOW and thank the good Lord in Heaven for blessing you with healthy children or children whose diseases are treatable, curable, or have ANY treatment/drug/therapy/surgery with a possible outcome of hope for your child. Why? <strong>Because Duchenne doesn't. </strong>Duchenne is and always has been a death sentence. But that may be about to finally change.<br />
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This drug therapy above, PRO044, is <em>not</em> a cure. It will not take the DMD away nor will it prevent Little from deteriorating. What it is, is hope. Hope that Little and the others will not die as teenagers. Hope that Little and the others will live to be 50+. Hope that Little and the others will walk until they are 30+. Hope that Little and the others will keep strong healthy hearts and breathe easily without ventilators and tracheostomies well into middle age. Hope that Little and the others will be the first generation of Duchenne to beat the odds that are laid out before them. A drug like this has the potential to rewrite the timeline that has always played out as the progression of this disease. <br />
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I don't know when this drug will be available, but the fact that it is happening at all is just mind blowing. Hopefully it will be ready before Little is in a wheelchair. Even if it's not, he will still benefit from it and it still means everything I said above to the boys younger than Little with DMD. Mister and I got to hold on to each other for a few minutes before he left for work today and really take in a moment of hope for our son. There is much to be excited about this morning! <br />
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Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com3tag:blogger.com,1999:blog-6711926069563284329.post-27919759823919412262013-07-07T13:50:00.000-07:002013-07-07T13:50:02.904-07:00Just Keep SwimmingI put Little in swimming lessons! They are held at the Y (of course) and are 4 days/week for 2 weeks. We are halfway through. The weather has been less than ideal - on Thursday, it was 67 degrees and raining. Yet we've both been in the pool, shivering and learning, every time. And yes, I said "we're both" in the pool. All of my DMD readers don't need this explained, but some of you might not truly understand why I appear to helicopter over him in certain situations. Andrew needs a one on one adult or instructor with him at all times in the water in case his legs give out or he gets knocked over. He does not have the balance, coordination, or strength to get himself back upright in the water. Everything takes just a bit more effort in the water, especially when it is chest deep! But I refuse to make him miss out on something like swim class for the selfish reason of not being able to just be a spectator like all the other moms. So into the water we go. I did ask the instructor if she minded first, by the way. I think she's secretly grateful for it since there are 8 little polliwogs and only 1 of her. I've had to redirect a few of them from wading into water over their heads a couple of times now while Instructor was working with a different child (once the child was sputtering and floundering). She can't be everywhere at once! She's great with Little, as you'll see in the video.<br />
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He really likes swim class, though it didn't start off that way. Lots of shrieking the first day. Lots of clinging to Mommy. Lots of my forcing his legs straight so that he could see that yes, he really can just touch the bottom and stand up. Lots of screaming and leg curling when it was time to go down the frog slide. I just stuck with it and made him do everything, knowing it was for his own good and that he'd be fine once he got comfortable with it. Now he voluntarily blows bubbles with his mouth and asks to go down the slide! I really want a picture of him going down the slide, but I have to get him up the steps and into position so that Instructor can take over from the outside and help him down the big frog tongue slide. So I am behind him when he goes down. Maybe one of the other parents will have to get in the pool this week and if so, I'll see if they can help out so I can get a picture.<br />
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Life jacket training. Andrew was the only one she was able to let go of and the only one who didn't get scared being put in the back floating position. My little fish.</div>
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Why does Instructor look like she's freezing to death? Because it was 67 degrees and raining. There were only 4 of us who showed up to swim class that day. <br />
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Yesterday was a friend's 5th birthday party at the riding stables on post. Little had a BLAST. He was completely worn out and fell asleep on the ride home. Here he is with his Ayla, waiting on their turn.<br />
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Such a change from the way he usually acts around ponies!<br />
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This one was taken in March.<br />
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Little has turned not only into a fish, but a songbird:<br />
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He has also taken up yoga as of late.<br />
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I turned my own arm into Little's logo.<br />
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<strong><span style="color: #38761d; font-size: x-large;">And this is Caleb, our Little's Leaguer of the day! He has been supporting Andrew internationally (Germany) until recently. Now he's wishing us well stateside.</span></strong><br />
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<br />Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com0tag:blogger.com,1999:blog-6711926069563284329.post-22531234511375953472013-06-20T08:35:00.001-07:002013-06-20T11:20:06.847-07:00I said what?I have an epic fear of the dentist. I cry just making an appointment over the phone. I was at Clarksville Dental Spa a few months ago getting my first check up since 2005 (seriously - that afraid) and all they could do to me was take x-rays because panic would set in as soon as they held up any instruments. They SWORE they could take care of all of my issues - which were much fewer than I had anticipated, seeing as how it had been 8 years since I'd been in to a dentist - 2 cavities, a root canal with a crown, and a deep cleaning- in one sitting. I take care of my teeth, I just hate going to the dentist. So we scheduled an appointment for a fully sedated block of 3 hours to get it all done at once. Sounded great to me! Knock it all out in one shot AND I'd get to sleep through it all? Perfect. Except that's not what happened.<br />
<br />
First, they called me 3 days before my appointment and told me they'd have to reschedule for a few weeks later bc the dentist had some family events to attend that day. So, sweet, I got to dread it and have nightmares about all my teeth being yanked out of my head for an extra 2 weeks. Then, less than 48 hours before the second scheduled appointment, they called to reschedule it again. Tried to make it for 3:00 in the afternoon that same day. Umm. You can't eat or drink anything the day of sedation so there was no way that was going to work. That's just asking for a migraine. The next available appointment was for an entire month later. So this place that is supposed to cater to people with dental anxiety has now tripled the amount of time I have to deal with mine leading up to the big day. The original appointment was for the first week of May, the one they actually stuck with was June 19. On top of that, I had to resecure a sitter for Little and Mister had to reschedule a day off work every single time they changed my appointment. *And they make you pay up front, so you can't just get frustrated and take your business elsewhere.<br />
<br />
So I took my 2 valium at bedtime the night before, just as prescribed. Felt nothing. It's supposed to help you sleep, but it didn't do jack for me. Probably because of my years of migraine medicines. Nothing in the weaker than a Maxalt seems to have any effect on me. Yesterday morning I woke up feeling like a slug and pouted around the house since I couldn't have any coffee and I knew that in just 2 hours I would be in the torture chamber. At 10:00 I took the two little football shaped pills called Triazolam, like I was supposed to. The nurse had told me they had a Xanax like effect to them. I've never taken Xanax, so that didn't mean anything to me. We hopped in the car and started to take Little to a babysitter so that Mister could stay with me at the dentist. At 10:15, Mister recognized a city code enforcer parked in the neighborhood, so he stopped and rolled down the window to chat with her for a minute. That's when I realized these little blue pills were no joke. Definitely stronger than a Maxalt. When he rolled the window back up I told him to swear not to let me talk to anyone until this was over, hide my phone from me, and why were the trees moving like that? <em>That's the last thing I remember.</em><br />
<br />
According to my husband, I was in and out of consciousness from that point on and when I was up, I was <strong>up</strong> and when I was down, I was o.u.t. Here are some of the highlights of the day, as reported to me by my husband.<br />
<br />
<span style="color: red;">Things I did or said on the car ride there:</span><br />
<span style="color: red;"></span><br />
<span style="color: black;">~ Hey don't let me talk to Whitney. Promise you won't let her come out to the car. Roll up the windows RIGHTNOW so that she can't come out and see me, I cannot talk to anyone like this!</span><br />
<br />
~Hide my phone. I really don't need to talk to anyone like this. Really. Take my phone and don't give it back to me no matter what.<br />
<br />
~Ooh, my phone! I'm gonna call my mom! (into her voicemail) HEEEEEEEEEEEEEEEEEEEEEEEEY MOOOOOOOOOOOOOOOM!!!! I'm on so many drugs!!!!! click. There, that oughta confuse her ALL day!!!! HAHAHAHAHAHAHA Let's call Gran! I'm gonna call Gran! (Gran picks up) HEEEEEEEEEEEEEEY GRAAAAAAAAAAAAAAAN!!! I'm on so many drugs!!!!!!!! Wharrtre you doing? Druuuuuugs! That's what I'm doing! Why are the trees moving like that? I'm on drugs! Weeeeeeeeeeeeeeeeeeeee! ***pull into Whitney's house to drop off Andrew*** Sam, don't let Whitney come out and talk to me! I'm on too many drugs. HI GRAN! Don't forget Andrew! No, I'm talking to Sam - Gran! Hey!!! DRUUUUUUGS!<br />
<br />
~pass out. pop awake. pass out. pop awake.<br />
<br />
~dance to the radio and tell Husband that we should go to the club so I can go dancing <br />
<br />
~pass out<br />
<br />
~Where's the kid?!?!?! Is he at Whitney's? Did we forget? Don't let her talk to me.<br />
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<span style="color: red;">Things I did or said at the Dental Spa before the appointment even started:</span><br />
<span style="color: red;"></span><br />
<span style="color: black;">~I can't get out of the car. Stop helping me! I can do it. I can't move my legs. </span><br />
<br />
~ **standing in the parking lot** Can we just stand here for a minute? My legs feel heavy. **3 minutes later, Mister gives up and drags me inside.<br />
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~ Ask Mister to sign me in at the front desk about 16 times<br />
<br />
~My mom calls back and I HAVE to answer it. Don't know what I said, but I know was loud.<br />
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~I HAVE TO PEE! Tried to take Mister outside to the bathroom down the hall but was redirected to the one inside the clinic by a nurse. Hey, a bathroom! I have to pee! You have to help me! **Start to take down pants while door is wide open. Sam saves the day.<br />
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~ **Aid comes to get me and I am still wearing my sunglasses. Tries to take them off and I throw a fit. I'm going to need those back! You can't have them. I need those when we are finished. **gives them to Husband. I'm going to need those back (angry glare at the receptionist who had nothing to do with it).<br />
<br />
~ Yeah, that'll work! **At the numbers on the scale they weighed me on in the back room. Mister said I was pretty happy with my weight.<br />
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<span style="color: red;">Things the Dentist and assistants told my husband I did or said during the appointment:</span><br />
<span style="color: red;"></span><br />
<span style="color: black;">~Nurse to Husband: What church do ya'll go to?</span><br />
Husband: Barker's Mill........<br />
Nurse: Oh, okay.<br />
Husband: Why?<br />
Nurse: Well, she wouldn't let us do any work on her until we all prayed together first. <br />
Husband: That sounds about right.<br />
<strong><span style="color: #38761d;">**YEAAAH!!!!!!! Good job, Katherine! Look at me, remembering whose in charge even when I'm medically and legally roofied!</span></strong><br />
<span style="color: black;"> </span><br />
<br />
~Dentist to Husband: What happened to her???<br />
Husband: What do you mean?<br />
Dentist: I mean, why is she so anxious? Did something happen when she was a child?<br />
Husband: I'm not sure. I know she's been dreading this for months and she REALLY hates going to the dentist.<br />
Dentist: Yeah, I could see that. Well we can't finish. She's a <em>little </em>girl and we've given her more medicine that we've ever given anyone ever before. All we got done was the cleaning and part of the root canal. She'll have to come back atleast 2 more times to finish that and the 4 cavities. ***4?????? There are 4 now????***<br />
<br />
Dentist: We asked her if she was ok with coming back and changing her sedation method. She said ok but she's all drugged up.<br />
Husband: No kidding.<br />
<br />
~Nurse: Next time I think we'll have to try doubling the dose of pills and using gas instead of sedation. <br />
**WHAAAT?**<br />
<br />
~Nurse: Ok, she's ready to go now. You'll have to pull your car around back. There's no way she's walking out here.<br />
Husband: Oh man. Are we going to have to stretcher her out?<br />
Nurse: We managed to get her in a wheelchair. I'm not sure how long we'll be able to keep her there.<br />
Husband runs to the car.<br />
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~ Where are my glasses? What did the dentist say? Where's the kid? Don't let me talk to Whitney.<br />
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~Nurse to Husband: So some of the draw down effects of these drugs are sleepiness and confusion. You need to stay with her all day. As in don't just put her to bed then take off somewhere - you need to actually be right there with her.<br />
Husband: Ok, that's fine.<br />
Nurse: And most of the time, the patient has lots of tears and crying as the drugs wear off.<br />
Me: **waves hand in a dismissive manner** Psshhhhhhhhhh. he's got that one down with me! Laughs histerically as I flop about in my wheelchair.<br />
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~Husband tries to get me in the car and I inform him that I can't remember how to get my leg inside the door.<br />
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<span style="color: red;">Things I did or said on the way home:</span><br />
<span style="color: red;"></span><br />
<span style="color: black;">~ pass out</span><br />
<br />
~pop wide awake What'd the dentist say?<br />
<br />
~pass out<br />
<br />
~pop wide awake, look in the backseat and scream "Where's the kid?!?!?!?!" Tells me he's at Whitney's and we are going to get him right now and I say.....Yep, you guessed it "Don't let her come talk to me. Promise? I don't wanna talk to anyone. I'm on drugs. What did the dentist say? Did they get it all done?"<br />
<br />
~pass out<br />
<br />
~Pop awake and see Little in his car seat behind me. Where that kid come from?! What did the dentist say?<br />
<br />
~pass out<br />
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<span style="color: red;">At home:</span><br />
<span style="color: red;"></span><br />
<span style="color: black;">~pass out on the couch for a few hours, much to my husband's relief</span><br />
<br />
~wake up groggy, but not quite as incoherent. Where's the kid? What'd the dentist say?<br />
<br />
~Burst into tears at the thought of having to go back a few more times to finish up what was supposed to have all been done in one visit. *But I only cried one more time! So take THAT nurse who said I would be a big baby all day*<br />
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~When is my face supposed to feel normal?<br />
Mister: In about 2 hours<br />
Me: Oh. wait - 2 hours from now or from when they numbed me?<br />
Mister: When they numbed you.<br />
Me: Umm, it's after 5:00. I've been numb for like 6 hours. What did the dentist say?<br />
*ended up not wearing off until sometime over night. I think I was numb for about 15 hours. I totally believe them that they gave me more drugs than any other patient ever.<br />
<br />
~ *As my head got clearer* Me: What did the dentist say? Did they get it all done?<br />
Mister: deadpans "NO. I told you, you have to go back bc they couldn't finish."<br />
Me: WHAT?!?! Why not? OMG I have to go back????!<br />
Mister: What do you want me to say? I don't know why they didn't finish! I don't have all the answers.<br />
**Mister clearly had lost his sense of humor and patience with me at this point and didn't care to hide it from me**<br />
Mister: I'm taking the kid and going outside for a while.<br />
Me: bursts into tears for the second time "Why are you being so mean?"<br />
Mister: Because I've already answered that for you like 20 times. You keep asking me the same thing over and over again.<br />
Me: I can't help it!!! I'm not doing it on purpose, I've been on drugs! How do you not understand it? You WORK on a drug task force!<br />
Mister: flees for the safety of the outdoors but later apologizes<br />
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<br />
So there you have it. The more entertaining parts of the day, that he's remembered to tell me so far. I cannot believe I have to go back again and that they found 2 additional cavities. My entire face is going to be numb that day. I am really just so disappointed that a place that claims to cater to people with my phobia and guarantees that they will make you perfectly comfortable and can handle it all - couldn't seem to get a grip on how to fix ANY of my teeth. NONE. All they did was clean them. Didn't fill a single cavity. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH I HATE THE DENTIST! Thank you SO much, very first dental assistant when I was a tot who backed me into a corner and pointed the explorer (the worst tool ever - it's the one shaped like a hook) at me and yelled at me to get in the chair or else she was calling over the dentist - and you don't want him in here, believe me! And thank you, Chandra, the clumsiest person to ever change rubber bands and brackets on someone with braces. Never left that place without busted gums, a slit bottom lip, or shredded cheeks - every month for FOUR years and a month. <br />
<br />
There is NO WAY I'm allowing them to finish my root canal without IV sedation. I've been awake for one before and it was the worst experience I've ever had at the dentist. So add that to the 2 examples above of why I am absolutely petrified of the dentist. Plus, the crazy patchwork job they did on that tooth left me with a big grey smudge on the front of the tooth! A FREAKING GREY TOOTH. So now I have to walk around looking like a meth mouth until this root canal gets finished - which with their track record of postponing appointments could be next February.<br />
<br />
So, if you'll excuse me know, I think I ought to call my mom and Gran and make sure I didn't say anything worse than "I'm on druuuuuuuuuuuuuuuuuuuuuuuuuuugs!" Oh, and Whitney - thank you for watching Andrew, even though I apparently wanted to hide from you.Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com0tag:blogger.com,1999:blog-6711926069563284329.post-2511370793499831132013-05-11T16:06:00.003-07:002013-05-13T07:00:02.058-07:00I Can do it MyselfThere is a time in a toddler's life when he or she decides for themselves that are ready to be a "big kid". They start trying to figure out the mechanics of pulling their shoes off of their feet and pulling the lids off of their sippy cups so they can flood the kitchen, I mean fill their own cup up at the refrigerator door. They start screeching "No, Mama! I do it myself!" multiple times a day while simultaneously shredding the tissue and swatting away your arm that was outstretched to wipe that runny nose. According to <u>What to Expect: the Toddler Years</u> (oh yes, the book series stretches out beyond just pregnancy), this phase usually sets in around the 29 month age (so, 2 years and 5 months for the mathematically challenged). This is around the same time that tykes start feeling confident and capable in their own abilities to do the things you have always done for them. In fact, they feel overconfident - I'd say more like superheroes; brave and full of pride. They do things like scaling the countertop to get their own bowl for cereal and run into the living room with the butcher knife because that banana you usually slice for them each morning? Well they "doo'd it demselfs". <br />
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Not my son. In one of his evaluations last December, a PT told me he was "very aware of his own limitations" and that he was protective of himself in the way of refusing to perform tasks that could potentially harm him. *He was refusing to climb (crawl) down a set of therapy steps at the time. She called it self-preservation. This was <strong>not</strong> a dig at my overprotectiveness or meant in any kind of negative way whatsoever. In fact, she sounded kind of impressed at how self aware he was and she told me it was great that he had developed that sense about himself so early on. I know it doesn't sound like such a desirable trait for a toddler, but when a broken leg could send you to a wheelchair by the age of 6 instead of 12 - then trust me, <em>it is. </em><br />
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Little's "help me do it" attitude has not just been in the aide of physical feats, like climbing stairs or jumping on the couch, but it in all aspects of his life. He has been perfectly content having me and Mister do even the simplest tasks that are considered self-help. I could encourage him, full on cheerleader style to go pull his own wet wipe out of canister himself so we can clean up the spilled oatmeal, but all I would get back is "I can't! Not by myself!" No sense of Hmmmmm,-maybe-this-is-something-I-should-try-for-myself seemed to be in there at all. <br />
<br />
<span style="color: #741b47;">Do you want to brush your teeth?</span> <span style="color: #3d85c6;">No, Mommy do it.</span><br />
<span style="color: #741b47;">Can you try to pull your socks off?</span> <span style="color: #3d85c6;">No, it's too hard!</span><br />
<span style="color: #741b47;">Now you try to pull your pants up.</span> <span style="color: #3d85c6;"> No! Youuuuuuuuu!</span><br />
<span style="color: #741b47;">Do you want to check the mail with me?</span> <span style="color: #3d85c6;"> Yes!</span> <span style="color: #741b47;">Ok, come on.</span> <span style="color: #3d85c6;"> No! Hold me, Daddy!!!</span><br />
<br />
I know some of you are thinking "Well she just does too much for him. She should just make him do things himself." Well I'm betting those of you thinking that don't have a child with a muscle disorder. Yes, I do a lot for him. Yes, I am keenly aware of the things he cannot or should not do for himself due to the dangers. So I do step in where I need to. But I *don't* just autopilot everything for him. I try and try and encourage and use that stupid singsongy voice while grinning ear to ear and chanting "You can do it! Just try!" 3000 times a day. I try to get him to do everything from undoing the Velcro on his monster shoes to singing "Brushabrushabrusha" from Grease while handing him his toothbrush to squealing and clapping like a lunatic every time he shows initiative. Do you seriously think I want to have to get up and do every little thing he needs for him? Do you think I don't want to just sit on the couch and breathe for 5 minutes uninterrupted by neediness? Do you have any idea how long it has taken me to type this much of this blog post out? I've been up about 14 times already. I try. So hard. He just doesn't care. Or lacks confidence. Or is lazy. Heck if I know.<br />
<br />
I began feeling like I was just always going to have to do everything for him. I know that the time will come when his arms no longer work and so I will have to begin dressing him again as a teenager, but I used to think that somewhere between now and then, Andrew would dress himself. Well we've had weekly OT* since he was about 15 months old and Little still seems to have no desire or idea how to put on his own shirt. Left arm through the neck hole? Sure, that seems right. It sure would be easier than sticking it through that other smaller one. Wait, I'm stuck. And it's dark. MOMMY HEEEEELP!!!! You do it!!!! *Not blaming his OT. She is wonderful and kind and cares so much about Little. She has practically transformed his little hands from curled up, crunched in closed fists to a hand that can grasp a crayon and hold a spoon and finger paint.<br />
<br />
As with most all of Little's milestones, I've been waiting a looooooooong time for this one. Andrew is not 29 months, he is 39 months (again, that's 3 years and 3 months). So 10 months past what is considered "average" for that phase to start. Now, before you all get hung up on the use of the word "average", please notice that I did place it in quotations, but I have to use some adjective that describes the way a child without any sort of special needs typically is expected to develop. And besides, Andrew is not average. Duchenne does not occur in your "average" child. So yes, the word is appropriate. I also could have used normal, typical, regular, usual, etc but those all seemed worse to me. So average it is. Back to the point here, which is that my child has never been a "me do it" toddler.<br />
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Until now. Halleluyer, my son has started saying, "I can do it by myself!" for the past 2 weeks. All of the sudden, one day he just decided that he doesn't need me to carry him up the 2 steps from our garage to the inside of our house, he can crawl up them and get in himself. He doesn't need me to get him a spoon out of the drawer for his cereal, he can pull the drawer open and dig one out himself while I am pouring the milk. He has decided that he doesn't need Daddy to carry him out to the mailbox, he can walk there himself and pull open the hatch. He doesn't need me to loosen the Velcro on his monster shoes before pulling them off, he can do it himself (the Velcro, not the pulling off part - but we'll get there). <-- actually="" already="" and="" ask="" back="" be="" believe="" by="" clothes="" come="" day="" dressed="" get="" go="" he="" him="" his="" i="" let="" ll="" might="" myself="" nbsp="" one="" out="" p="" pick="" room="" starting="" that="" the="" time="" to="" when="" will=""><br />
He has been trying to do so much this week. He is still so aware of his limitations, though. Like earlier today, he wanted a mini bag of Fritos for a snack, so he went to the pantry and got them himself. Then he brought them to me and asked me to open them. Didn't even try to do it himself, as he knows he lacks the strength and dexterity to grasp the two different sides of the bag and pull it apart. Many times in these last 2 weeks, I have heard him say "I can do it!" then pause as his mind wraps around the mechanics necessary to accomplish whatever it was and then ask me "Can you help?" And yes, this new sense of freedom and bravery and confidence he has means more and bigger messes in the house. Like the flooded kitchen floor referenced in the first paragraph... But these are messes that I am lucky to be able to clean up (now with his help).<br />
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I don't know if it's preschool and being around so many other children who can physically do so much more than he can or just that the particular switch in his brain that signals the "I can do it" attitude to kick in has finally activated, but I am so thankful. This is a stage that is so easy to take for granted or get annoyed with because doing it themselves means it takes 7xs longer, but I welcome it with open arms. This seems to be a recurring theme in the Palmer house...crawling, making messes, having to babyproof...life with a special needs child is so challenging yet rewarding in ways life with an "average" developing child is not. I believe that my sense of gratitude is much more sensitive/heightened than most people's. Every milestone that he hits is a true gift. Ok, I lied. I am not thrilled at all with the WHY? that follows every. single. thing. I say to him. But then again, speech has never been an issue. So I guess I just reinforced my point.<br />
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Speaking of preschool - here is how much he loves it:<br />
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<img alt="" aria-busy="false" aria-describedby="fbPhotosSnowliftCaption" class="spotlight" height="960" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash4/374980_10151485959960983_1775197713_n.jpg" style="height: 889px; width: 663px;" width="716" /><br />
<!------></-->Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com1tag:blogger.com,1999:blog-6711926069563284329.post-54434729587493653172013-05-01T17:09:00.001-07:002013-05-01T17:09:56.806-07:00Muscle Walks and a Talent ShowSo our 2013 winter/spring season of fundraising has finally come to a close. In early March, we had our annual MDA Muscle Walk in Arkansas. We raised $2630!!!!!!! WAY past our goal of $1500! I just can't thank you guys enough for all the donations! Little's League totally came through this year.<br />
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<img height="427" src="https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-ash3/65687_452556281491456_428849944_n.jpg" width="640" /><br />
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We shrunk in size a bit this year, but it sure didn't slow down our spirit! Check out Little's sweet ride during the Victory Lap!<br />
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<img height="640" src="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/r90/12674_452556701491414_2010655562_n.jpg" width="426" /><br />
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<img height="640" src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/r90/537201_452556654824752_1503801128_n.jpg" width="426" /><br />
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That's my dad, for those of you wondering. <br />
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Our youngest team member turned 2 that day, so we celebrated with cupcakes.<br />
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<img height="426" src="https://fbcdn-sphotos-c-a.akamaihd.net/hphotos-ak-prn1/604132_452556751491409_603874390_n.jpg" width="640" /><br />
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<img src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/541597_452555968158154_658569115_n.jpg" /><br />
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<img height="640" src="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/526447_452556858158065_1753844467_n.jpg" width="426" /><br />
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Little Boy's always in the spotlight. He knows exactly what he's supposed to do in front of that banner.<br />
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<img height="426" src="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/73308_452555991491485_1097341234_n.jpg" width="640" /><br />
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The MDA crew<br />
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And because.......well......putting Andrew on a horse is never not hilarious.<br />
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My mom couldn't take it and swooped in to rescue him.</div>
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Next up, we had Music City Muscle Walk (Nashville). We couldn't actually attend since it was the same day as Little Rock's, so I worked with the chapter there and found a way to keep our team registered but donate late. For that, the incredible students at Montgomery Central High School in Cunningham, TN devoted their annual Talent Show for charity to Andrew and Duchenne - for the second year in a row! These teens are so amazing!!!!!!! They can pick any charity they want, so for them to pick MDA again just blew my mind. Thanks to these students, we got to send $800 to MDA Nashville! That's the exact amount of money it takes to send one child to MDA's summer camp. So the money will either sponsor a child with DMD for summer camp, or go to DMD research.</div>
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Here are some highlights from this year's crop of talent:</div>
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<b>Jack Roney</b></div>
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<b>Haleigh Smith</b><br />
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<b>And the winner, Madelyn Pulley</b><br />
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Little and his girlfriend, Littler (who is actually older than he is!) getting cozy to watch the show.<br />
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Our "check" for $800 - which all came from donations at the door.</div>
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All of the participants and the student directors and emcees with Andrew and his big check.<br />
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Thank you again to Bailey McMahan, Lauren Ritter, Maggie & Scott Davis, and the MCHS NHS for putting this on and letting us be a part of it. We were truly honored.<br />
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So that makes a total of <b><span style="color: blue;">$3430.00</span></b> that Little's League raised for MDA this time!!!!!!!!!!!<br />
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Our Little's Leaguer of the week: <b><span style="color: #76a5af; font-size: large;">Wayne Pinckley!</span></b> Wayne is a member of our church, Barker's Mill Church of Christ, adores Andrew, and has been known to make me cry like a fool a time or two. :) This photo is from an old timey play date our tots had at church a few weeks ago. I don't think you can usually find him on an itty bitty trike, but then again.......I don't really know what he does in his spare time. ;p<br />
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<br />Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com0tag:blogger.com,1999:blog-6711926069563284329.post-66836164758910779672013-04-04T11:24:00.000-07:002013-04-04T11:24:43.424-07:00Dene Ward's Flight Paths<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">As I mentioned in my last post, I am taking part in a blog sharing group. The one i shared with you titled <a href="http://homemadetatertot.blogspot.com/2013/03/with-new-ears.html" target="_blank">With New Ears</a> was my submission to the group. Well the group hosts liked it so much, they've decided to host it over on their main site @ <a href="http://www.maidservantsofchrist.com/" target="_blank">maidservantsofchrist.com</a> Pretty </span><span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0976563); -webkit-composition-frame-color: rgba(191, 107, 82, 0.496094); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; font-family: Noteworthy; font-size: 18px; font-weight: bold; line-height: 24px;">cool, huh? Go check it out! Today all of us who are participating are sharing another writer's blog. So I introduce you to Dene; a devotional writer. Dene currently has two books out; <u>Soul Food: Lessons From Hearth to Heart </u>and <u>Flight Paths: a Devotional Guide for Your Journey</u>. She writes over at <a href="http://flightpaths.weebly.com/" target="_blank">http://flightpaths.weebly.com</a></span><br />
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HOLDING HANDS</div>
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I sat with my hands in lap, listening to the announcements. When it came time for prayer, instantly two hands reached for one and held the until the amens echoed around the building.</div>
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The hand on the right was my husband's. after spending thirty nine years together, it seemed only natural. We are always touching, patting, and hugging. To walk past one another without some sort of physical contact is unthinkable. What has made this relationship even more remarkable though, is the spiritual sharing and touching. Wen two people pray for the same things, hope for the same things, and endure the same things with the help of the same Comforter, two people who were so an like in the beginning that several people tried to talk us out of this marriage, the closeness can only be with the help of the Divine Creator who united us in far more than just holy matrimony.</div>
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The other hand came from a friend, someone's have known for several years now, who has supported me in every way imaginable, who has stood by me and lifted my name up in prayer, who has shared her own trials with me and allowed me to help her as well, someone who lives nearly fifty miles from me, whom I would never have known except that we share the same Savior and the same hope and a place in the same spiritual family.</div>
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Some people view holding hands in prayer as nothing more than an outward show of emotionalism. To me those hands signify the unifying power of the grace of God. That unity began with 12 men who never would have come together in any other way, and soon spread to add one more. Some were urbane city dwellers who looked down on lowly Galileans. Some were working class men while another was a highly educated Pharisee. Some had Hebrew/Aramaic names while others' names bore the influence of Hellenism. One was a Zealot and the other his political enemy, a tax collector. Yet The Lord brought the together in a unity at conquered the world.</div>
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I have held black hands and brown hands and white hands. I have held plump soft hands and I have held rough calloused hands. I have held the tender hands of the young and the withered hands of the old. I have held the hands of lawyers and doctors and plumbers and farmers, teachers and nurses and secretaries and homemakers, hands that hammer nails and hands that toe on computer keyboards, hands that cook and sew and even hands that carry a weapon on the job. We all have this in common --- our Lord saved us when none of us deserved it. That is His unifying power.</div>
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The hand of God is the one that makes all of our hands worth holding.</div>
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<i>May the God of endurance and encouragement grant you to live in such harmony with one another, in accord with Christ Jesus, that together you may with one voice glorify the God and Father of our Lord Jesus Christ. Therefore welcome one another as Christ has welcomed you, for the glory of God. </i>Romans 15:5-7</div>
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Dene Ward</div>
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So I am still in Florida and doing all of this on my iPad on borrowed wifi, so forgive my typos and I will feature a Little's Leaguer next time when I have access to my photos again. </div>
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Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com0tag:blogger.com,1999:blog-6711926069563284329.post-5899253989598936652013-03-22T15:38:00.001-07:002013-03-22T15:38:57.113-07:00With New EarsA few weeks ago, our new preacher gave a sermon on a Sunday night on a topic that I thought I knew all about. I've heard the story a hundred times; Jesus was arrested, taken in front of Pilate, admits he is the son of God, and pays the price for it - paving the way for us to gain entry into Heaven. I'm sure most of you have heard all about it a hundred times, too. It's only the biggest deal in the Bible - it's the whole point of Christ on Earth. But as I was sitting there, listening to Brother Dean describe all the details of what agonies Jesus went through, what God chose to allow to happen to His son - it was like I was hearing it for the first time. In fact, it effected me so much, that I mentioned it to the preacher. I couldn't quite put my finger on what it was that got to me, though. Preacher Man could tell it was marinating in my head so much that he even stopped by house the next night. I still didn't have an answer for him. It didn't hit me until last Thursday as I was driving from Ft Campbell, KY to my parents' house in Arkansas. Then it hit me square in the face. I grabbed my phone and babbled a barely coherent note to Siri to write this blog as soon as I was back at home in front of my computer. <br />
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So why did the Lord's death leave me shaken in a way it never had before? Because THIS woman had never heard the story before. Yeah, I know I just said I had heard it a hundred times. But that was before. Before Little. Before Duchenne. You know, <i style="font-weight: bold;">before</i>.<br />
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See, I had never heard the story of the crucifixion with a set of mother's ears before. Having a child changes <i>everything</i>. Having a child with a chronic illness? Well. There's just nothing, no person, and not a single solitary event that I view the same as I did before. I have more empathy for others, I assume that people are acting out of struggle more than just bad manners or rudeness than I used to, I carry more pain around with me (for myself, my husband, my son, my friends and family who are dealing with hardships, strangers on the news, sad stories on the internet, etc), I judge less. I don't mean that I am sad all the time - I am certainly not! I guess, I just mean that I am softer now. My corners are less likely to cut you. This brief time I've had in the world of Duchenne and parenthood has completely altered my perception.<br />
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Hearing what our Lord had to endure, I could not stop myself from thinking about his own parents. Not Joseph so much, because to be honest, I don't really know what happened to him after Jesus taught in the temple when he was 12. The Bible doesn't say a whole lot else about him. But Mary was there that day. Mary was there as they were preparing him for the cross. As Dean Roach (my preacher) was talking about the stripping of Jesus's robes and the beatings and spitting, I just kept feeling these stabs in my heart for his mother. To see your child like that? To know what was about to happen - that he was about to have spikes driven through his wrists as if he were a scrap piece of wood? Mary had to witness something so unfathomable - her baby <i>nailed to a cross</i>. Did you all know Jesus was scourged? That means his beard was ripped off of his face - hand pulled off of his face. So not only did she see her son on the cross, thorns in his head, but his flesh was missing from his cheeks and chin. How Mary survived that horror herself, was only through the grace of God. I sat there listening to Dean describing the details of that day and I couldn't help but think about the pain and suffering that I will have to watch my own child go through as his DMD progresses. Little's muscles will begin to waste away soon and contract into themselves, painfully pulling away from his joints. He will begin to lose strength and mobility as that happens, falling more frequently, bruising and scraping and breaking skin and bones along the way. And as I sat there, comparing and contrasting Mary's experience with my own, one mother to another, I realized that God, too went through everything Mary did. He's Jesus's father, so all of that parental pain and anguish Mary felt, God felt, too - except that God did it by choice. God did this on purpose.<br />
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<b>God did it for us.</b></div>
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Our God is an awesome God! Knowing FULL well how horrendous that day would be, God still sacrificed his one and only son as payment for our sins. He gave up his child for us. For you. For me. For nasty old, pitiful, terrible, sinful, undeserving, scumbags such as ourselves. He took a chance on us. He let his son die that way on the shot of just one of us accepting Him as our Almighty, as his Son as our Lord and Savior and that we'd repent and be baptized for the forgiveness of our sins. There are just no words powerful enough to thank Him. I just...........oh man. Nope, no words. Magnify His name! </div>
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Could I give up my son if it meant a cure for Duchenne? Could I hand my son over to the wolves and let them rip him apart limb from limb if it meant that by doing so, all anyone with DMD had to do was believe in him and live for God and they'd be free from this disease? That's essentially what Mary did. She trusted in God, allowed her son to do what God called him to do, and endured the worst reality anyone could ever face. The disciples even decided to take her away at one point bc they didn't want her to watch Jesus actually be nailed to the cross. Then she came back. She couldn't stay away. No matter how terrible it was, Mary could not stay away from her son's side. What a remarkable mother. But could I do the same? I don't know. I would hope so, but I don't know. I had trouble just handing him over to his surgical team earlier this week because of the elevated risk of death he has from anesthesia (more on that in the next blog). But wow - what incredible parents Jesus had. We should all be so in love with our children. Keep in mind that we are all God's children, too. He gave up one child (Jesus) to save the others (us). "For God so loved the world that he gave his only begotten son that whosoever believeth in him shall not perish, but have eternal life." John 3:16</div>
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I think this particular sermon will stick with me for a very long time. It has left some vivid images in my head and emotions in my heart. I am excited to see what other lessons from the Bible are going to sound brand new to me with these "new ears" of mine. The story of Job is another one that I was able to learn more from this go-round, too. </div>
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If you are reading my blog for the first time today - welcome! I know some of you are here from a little blog sharing I am taking part of as a christian blog swap group. I hope you stick around and feel free to check out some of my older posts. "The Diagnosis" is a good one to check out if you have no idea what I'm referencing when I talk about DMD or Little.</div>
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To my regulars - Next up: MDA Muscle Walk 2013, Little's surgery, & some RiDiCuLoUsLy fantastic pictures from his 3 yr photo shoot. Little's Leaguer of the month will be back next time, too!</div>
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God bless!</div>
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Katherine</div>
Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com1tag:blogger.com,1999:blog-6711926069563284329.post-4699780338446729062013-02-26T15:13:00.000-08:002013-02-26T15:13:39.576-08:00I Win at Pinterest!So, I can't take <i>all</i> the credit. I might have had a teeny tiny bit of help. Or a ton. Or maybe all I did was find the pin, accompany my husband to Lowe's, and then make it look pretty. Whatever, I totally win at Pinterest.<br />
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So last Saturday, I was trolling around on Pinterest while Mister watched something sports related on tv. Allstar weekend. That's what it was. I vaguely remember asking him if Lamar Odom made it this year bc he cries when he doesn't get picked and he looked at me like I had a toe growing out of my forehead. Apparently Mr. Khloe didn't play this season? Cuz I pay that much attention? So back to Pinterest. I found this pin:</div>
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<tr><td style="text-align: center;"><img alt="Secret Storage When it comes to problem solving and organizing small spaces, sometimes a little creativeness is in order. It means really utilizing every square inch of space and thinking up ideas that are completely outside of the typical box. That is exactly what Mallory did and the outcome is AMAZING!" height="400" src="http://media-cache-ec7.pinterest.com/550x/ff/7f/19/ff7f195946f180b6da3ed2d5811678c0.jpg" style="margin-left: auto; margin-right: auto;" width="262" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.classyclutter.net/2012/05/build-your-own-extra-storage-diy-canned.html" target="_blank">Classy Clutter's Pull Out Pantry Tutorial</a></td></tr>
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Brilliant, right? A pull out pantry utilizing the space between your fridge and the wall! My pantry is tiny.</div>
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And this is the after picture, so when you get to the bottom of this, imagine all that stuff crammed in here with what you see in it now.</div>
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So I showed that pin to Mister and told him we should build it for our house since we have about 6.5" of unused space surrounding our refrigerator. He said it looked doable to which I replied, "So what're you doing today?" He laughed and said "Not building a pull out pantry". Again I replied, "So what're you doing tomorrow?" He just smiled and kind of shook of his head. I took that as a yes.</div>
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Sure enough, after church the next day, with measurements and the shopping list Mallory at Classy Clutter so kindly listed in her blog, we headed off to Lowe's. We bought all the raw materials we needed (and a shamrock for MDA) for about $85.00. We got lucky and found a large piece of bead board with a crack in it in the clearance section to use for the back board for only $7.00. We ended up being able to cut the part with the crack in it off. Lowe's even cut all of the 1x6 boards for us for free, too. The only thing they wouldn't do was cut the dowel rods. </div>
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I headed home with Little to put him down for his nap and Mister headed to a friend's house to cut the dowels. I started to get annoyed the closer it got to 6:00 because Mister usually stays home with Little so I can go to church. It's hard to pay attention to the sermon with Andrew squirming and making noise so Sunday nights are my time to actually get to listen. I ended up having to take Andrew to church with me since Mister was still at his friend's house. To my surprise and complete delight, he texted me at the end of service a picture of the completed pantry! He had stayed over at his friend's house putting it together! I FOUND A PIN ON PINTEREST AND MY HUSBAND ACTUALLY BUILT IT FOR ME!!!!!!!! How often does something like that actually happen?!?! Umm, I can now count to one time in this house! Obvi, I was no longer annoyed that I had to miss parts of the sermon shushing Andrew.</div>
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I went to Target the next day and found some contact paper for the shelves and backboard. I was just going to paint the back, but after painting the sides and trim, I remembered that I loathe painting. I got the high gloss black paint at Wal-Mart and the green is left over from when I painted the house. I had to buy rollers and painter's tape, too. Grand total of all materials for the entire project was just under $100 and since I have odor triggered migraines (paint fumes) and a toddler (so I could only paint during nap time and preK and for about an hour at a time to try and avoid the migraine. I failed.), it took me 5 days to get it all painted and covered in contact paper. It would take someone without those 2 obstacles 2 days with drying time. And yes, the migraine was well worth it.</div>
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So here is what the Palmer version looks like:</div>
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Just showing that you can still open the fridge while the pantry is pulled out.</div>
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No, this pantry is not 100% sturdy. It is too tall and skinny to be left to it's own 4 wheels for stability. To make sure Little won't be able to pull it over on himself, Mister Gorilla Glued a strip of wood trim to the floor, just behind the front wheels. This way the back wheels catch on it and the pantry cannot be pulled out far enough for it to fall over. It is still wedged between the fridge and the wall safely. Plus it is too heavy for Andrew to pull at all - but this way, if I forget to push it back in and run to do something in another room, he has no way of tipping it over.<br />
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Do you love it?!!? Remember all of that stuff used to be inside my tiny pantry along with what you see in the picture up top. I freed up an entire shelf just by moving my cooking oils. And there is still so much room in the pull out! I only put those paper towels in it so it wouldn't be empty in the pictures!</div>
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So if you click on the link under Classy Clutter's picture to do this for yourself, here is what I would add:</div>
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~ if you use Lowe's, buy the 1x6 boards instead bc Lowe's 1x4s are actually .75 x 3.5 which are too narrow for bigger canned goods (so natch, these 1x6s are really .75 x 5.5)</div>
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~ contact paper on the shelves instead of paint bc you are going to scratch up your shelves with use</div>
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~ make sure you get a substantial handle bc the pantry gets heavy </div>
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~ she doesn't talk about adding a stopper or some sort of tethering system, but you definitely want one since the pantry is not quite sturdy enough on it's own</div>
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~ think about skipping the backboard all together and just doing a second set of dowel rods on the back side (an open concept for your pantry! lol) *This is probably what I will do next time bc covering that board was a beast.</div>
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So a huge thank you to Mallory at Classy Clutter for posting this tutorial! Here is a link back to her site again, if you missed it above: <a href="http://www.classyclutter.net/2012/05/build-your-own-extra-storage-diy-canned.html">http://www.classyclutter.net/2012/05/build-your-own-extra-storage-diy-canned.html</a></div>
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And an even bigger one to my husband and Cliff who built this monster for me last weekend. And yes, Cliff, I am working on your next projects. You saw that was plural, right? Be careful what you ask for...... :)</div>
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And now for your viewing pleasure, the vocal stylings of one mister Andrew Thomas Palmer. Take it away, Little!</div>
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<b><span style="color: red;">Our Little's League member of the week: Ayla Grace! (Or as Little calls her "my girlfriend")</span></b><br />
<img src="http://sphotos-b.xx.fbcdn.net/hphotos-ash3/644729_434584559955295_6754448_n.jpg" />Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com2tag:blogger.com,1999:blog-6711926069563284329.post-72205012068999128332013-01-25T14:02:00.001-08:002013-01-26T09:29:54.079-08:00The Times, They Are A-Changin'<br />
Things are happening in the Palmer house. 2 Months ago I had my heels (well, more like calves) stubbornly dug <b>firmly</b> into the ground on the whole "we-re getting the h-e-double-hockey-sticks out of the Army in 2014" issue, I was 75% sure I was going to turn down preschool for Little until August, I was barely keeping head above water most days trying to keep my emotions, motherhood, and responsibilities as a wife balanced, and suffering from debilitating chronic headaches/migraines. (Which reminds me, I never posted about all the crazy things I tried to ease the pain - check this one out!)<br />
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Man, I look amazeballs there. I look like a bobblehead now, as you will see in some of the pictures below from Andrew's birthday party. That's a whole different issue, though, that I don't have time for in this post.<br />
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Anyway - here we are, just a few months later and just a few weeks into 2013. My headaches are better. Turns out it was my antihistamine that was causing my frontal sinus headaches. I've stopped taking it, so that part of the head pain is gone. I'll have to work with an allergist to figure out something else before spring, though, as I'm allergic to grass. I also have tension headaches, which cover tha back of my skull and my neck, so those are obviously still going strong. My migraines are better but not gone as my Topomax only covers some of my triggers but not all of them. At least they are less frequent.<br />
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As some of you know, 2012 ended on an incredibly low note for me. I was not in a good place. I was filled with grief over the way I had been putting my entire existence into Andrew's Duchenne to the exclusion of everything and everyone else - including my own husband. I had been unknowingly pushing him away with how I had been trying to survive/cope with the new life Duchenne had brought with it. I had been focusing so hard on doing what is best for my son that I had forgotten about what is best for my husband, myself, and my marriage. God lets us know that if we are married, after Him, our spouse comes next - <i>not our children</i>. I know, I just blew some of your minds. That concept is sooooooooo hard. It is against our very nature as mothers. Mother's instinct is to shove our children to the forefront of every priority list no matter who we have to trample over to get there. And that is exactly what I have been doing to Mister in the job department. By refusing to consider reenlistment as an option in 2 years, I have stomped him into the ground. I have added so much pressure onto his already burdened shoulders. This man allows me to stay home and raise our special needs son. He has given me one of the greatest gifts any mother could dream of - the ability to be present for every single miraculous milestone that my courageous little man fights to achieve Guess how many Mister has been present for? Yeah. Exactly. Because he's the one at work, doing his best to provide for us. And I dare to try and dictate which jobs he can and can't accept in 2 years? SHUT UP, ME. <br />
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But back to the Bible. A married man is to love his wife as Christ loved the church (<a href="http://www.biblegateway.com/passage/?search=Ephesians%205:25&version=NIV" target="_blank">Eph. 5:25</a>). Christ's first priority after obeying and glorifying the Father was the church. So God first, then the church/wife. In the same way, wives are to submit to their husbands "as to the Lord" (<a href="http://www.biblegateway.com/passage/?search=Ephesians%205:22&version=NIV" target="_blank">Eph 5:22</a>). Please don't get hung up on the word "submit". It doesn't mean bow down. The principle is that a woman's husband is second only to God in her priorities. You know the saying "Happy wife, happy life"? Well, it's kind of like that for the husband and "Happy Husband, Happy...........Flusband" for us wives. Flusband, of course, being that new hip slang for "life"....that all the cool kids are saying these days....yeah. Flusband.<br />
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So in another post or two I'll get into Proverbs 31 and what I got out of Sarah Horn's book <u>My So Called Life as a Proverb's 31 Wife</u>. Super cute book, btw.<br />
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Cut to today. Many realizations and apologies later (from both of our mouths and hearts) and Mister and I are both trying very hard not to let Duchenne divide us. We do not want to be another statistic of this disease. We are trying to let go and let God more, which is difficult for 2 stubborn old bats who are prone to bouts of cranial rectitus. I've also gotten a few counseling sessions under my belt now, so score for sticking to my new year's resolutions! I learned something very interesting that I wanted to share. I know I said I wouldn't share much from my sessions, and I won't but this really was an "Aha moment" to quote Oprah. I learned that one of the reasons I have been so sad lately is that I am grieving not only for myself and Andrew, but also for my husband. For everything he has/is/will lose from this disease. Every dream he had for Andrew or for himself that will not come true - even silly ones like thinking they'd be able to go take the dog for a run one day. We don't have a dog. Sam doesn't like to run. But what if 10 years from now Sam takes up running and wants a black lab and wishes that Andrew could go for a run with them? My nose is burning just typing that in here. I want to cry. What if Mister wanted to cheer him on from the bleachers as Andrew played running back or tight end? What if Mister wants to hop on a plane for an impromptu deep sea fishing trip off the coast of Florida for a surprise 16th birthday trip for Little? You can't do that without advance preparation and planning when wheelchairs and medications and handicapped accessible van rentals and arm muscles that are too week to reel in the line and who knows what other adaptive equipment he'll have at that point are involved. I am sad for my husband that he can't have everything in life that he could ever want. I don't just grieve for myself. I don't just grieve for my son. I grieve for 3 people when I allow myself to feel it. <br />
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The next change in the Palmer house? Little Face turned 3!<br />
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We had his birthday party the following day. It was supposed to be from 11-2 come and go as you please, but it didn't end until about 7:30 p.m. So I'd say it went pretty well! Please don't be upset if you didn't get an invitation. We have a tiny house so we kept it to immediate family and his 6 little friends (which is actually double the amount of friends all the websites say a 3 year old is supposed to have at his/her party). Next year if we have the party at an external location, we'll be able to invite more people.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiunUD_MTlIfec8jV8ZZpX4UvymS-I79zQtGykk8vmmX7K1IYPt_5eHHuJRfYswtciTybMQl3D4hfKuHKP_iXhLovrzXrVIjRSm9X_36lEFiqsimB468bCckLZIEN9KEdwDtxnu6HffkNw/s1600/invitation.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiunUD_MTlIfec8jV8ZZpX4UvymS-I79zQtGykk8vmmX7K1IYPt_5eHHuJRfYswtciTybMQl3D4hfKuHKP_iXhLovrzXrVIjRSm9X_36lEFiqsimB468bCckLZIEN9KEdwDtxnu6HffkNw/s640/invitation.jpg" width="314" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The front and back of the invitations. I don't know why my scanner made them look dirty.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqdP3SuKXIXA8K8I19diPapoK2BGLIm12xCh2LywQ1NHPrZTwjqCdxGnK_BSmnCEKbAG84KOPUKTzVFG-c9joaYbc0tk_HbEa_ClfOqe3IRENIt6dw2BkFJqlOxwgKWGoV94XHHcVuB9g/s1600/IMG_1137.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqdP3SuKXIXA8K8I19diPapoK2BGLIm12xCh2LywQ1NHPrZTwjqCdxGnK_BSmnCEKbAG84KOPUKTzVFG-c9joaYbc0tk_HbEa_ClfOqe3IRENIt6dw2BkFJqlOxwgKWGoV94XHHcVuB9g/s640/IMG_1137.JPG" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the mustache decor</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh83jAOEmLV4aKV4Yg5c10BFfZDIo0kwIkLNeeC2cO_GMf-IwyC7xfJlUDskMcDcmhHqqleXfLOhqkr7vr5UlrOt_WMxRnSgiFw3Q7EEaw1ZKvko6Yir6j7ARdrblciqeIuo41N4um-4fQ/s1600/IMG_1147.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh83jAOEmLV4aKV4Yg5c10BFfZDIo0kwIkLNeeC2cO_GMf-IwyC7xfJlUDskMcDcmhHqqleXfLOhqkr7vr5UlrOt_WMxRnSgiFw3Q7EEaw1ZKvko6Yir6j7ARdrblciqeIuo41N4um-4fQ/s640/IMG_1147.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cake pops! My awesome friend, Desiree baked them. She tried to shape them but they looked like squares and brains, so I taught her what a ball shape looked like (it's not her fault they skipped that part in preschool) then the next morning my mom and I coated them in chocolate and sprinkles. Guess which ring I frosted? Yup, the one on the right. Because I fail at cake decorating. HAHAHAHAHA! I did the 3 in the middle, though!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLkaytHs9eyzM2rJGh6rSc0uWR180skzYRyEGaqsZTCLl8vghJZJhwWh5LlzekwwJITf0z73pih_MUx-TAzZ54JuCBQXzGGWqEE92sanHP9URtXwGWQcMj77mAr3yayK13D8YpDtT654Y/s1600/IMG_1150.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLkaytHs9eyzM2rJGh6rSc0uWR180skzYRyEGaqsZTCLl8vghJZJhwWh5LlzekwwJITf0z73pih_MUx-TAzZ54JuCBQXzGGWqEE92sanHP9URtXwGWQcMj77mAr3yayK13D8YpDtT654Y/s640/IMG_1150.JPG" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A 3 for turning 3, an A for Andrew and a P for Peyton.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizOBE2yPNasv7khIpp0iVwjbnwj4j84jpMCKXXJkoHaDNuaTEF0uOOk30DPWzeL4XH9ln7ei7l0S2hRssO_PawWjARzmqmsx_05cc592ZtKh5-YPO6eKh9oNR8vN57sYrK6MPK6YhhdzQ/s1600/IMG_1138.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizOBE2yPNasv7khIpp0iVwjbnwj4j84jpMCKXXJkoHaDNuaTEF0uOOk30DPWzeL4XH9ln7ei7l0S2hRssO_PawWjARzmqmsx_05cc592ZtKh5-YPO6eKh9oNR8vN57sYrK6MPK6YhhdzQ/s640/IMG_1138.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pin the mustache on Andrew!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Yeah, Cheater Mghee here did not win.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIw-Vc2uvja6tsGtMFOp8vertkP5F0PEA_Sf98kDI0JHGalxBups-nHHEVWrlDGO3yqYZays5KzmGyQJoW3h1dmWp8OPap9ZJKiOe6uyV_vnoNylbX5aMZ2OAjkBorXxYFnAL1S8v5bDA/s1600/IMG_1154.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIw-Vc2uvja6tsGtMFOp8vertkP5F0PEA_Sf98kDI0JHGalxBups-nHHEVWrlDGO3yqYZays5KzmGyQJoW3h1dmWp8OPap9ZJKiOe6uyV_vnoNylbX5aMZ2OAjkBorXxYFnAL1S8v5bDA/s640/IMG_1154.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kayleigh gave him a marshmallow. He immediately spit it back out. But really, this is the only picture where you can see his party shirt in it's entirety. "Well, if you really mustache [must ask] I'm 3"</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">What's a party without forcing your guests to wear fake mustaches?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1-FKMjeP9J7qnrgQ0cKTk_GIgtnb48vkXqE8zCvHVHdGI4vU0OC7YdQwQa8gofZBHzrS6KIlU36gyoPNZLAfLe8RWcnthU6i_YI_r_wzHjfIWyBxH0TVGZrgszdzrI3Tm1e_zGIFPTto/s1600/IMG_1166.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1-FKMjeP9J7qnrgQ0cKTk_GIgtnb48vkXqE8zCvHVHdGI4vU0OC7YdQwQa8gofZBHzrS6KIlU36gyoPNZLAfLe8RWcnthU6i_YI_r_wzHjfIWyBxH0TVGZrgszdzrI3Tm1e_zGIFPTto/s640/IMG_1166.JPG" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That's the spirit, Liz!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJvjNtpZTmQH_ctVRl29lJwi_Ti3sey7Cv5LG2InyrmcFlK0xg7lO0pIV0YuZipVTkNehak37ylLjoON7FQSQ9Kv9-sfBgvXnwIsrwXDqNWoXaEOYrPF1CJwb72vxix1Y4R-8JNJrREAg/s1600/IMG_1163.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJvjNtpZTmQH_ctVRl29lJwi_Ti3sey7Cv5LG2InyrmcFlK0xg7lO0pIV0YuZipVTkNehak37ylLjoON7FQSQ9Kv9-sfBgvXnwIsrwXDqNWoXaEOYrPF1CJwb72vxix1Y4R-8JNJrREAg/s640/IMG_1163.JPG" width="425" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Even L.W. was a trooper!</td></tr>
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"What in the world is that on his arm?!?!?!" It's a tattoo in progress. So just ignore it for now. He's got at least 2 more sessions to go, then I will show it to you and explain if you need.</div>
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<tr><td class="tr-caption" style="text-align: center;">Andrew was less than thrilled...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghJcLgH9dBdhtT4WY0-3geAMj1AmiUq0CbamHNBg0r7DFbcF-fiG2eIEAwcScTEw_cPpDMv5qxgP7-0C903xPOZpl0-gFvR3tth77m9vjC6QonuvU_YXERJIVlKqKImtUykgH8zasjKBU/s1600/IMG_1160.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghJcLgH9dBdhtT4WY0-3geAMj1AmiUq0CbamHNBg0r7DFbcF-fiG2eIEAwcScTEw_cPpDMv5qxgP7-0C903xPOZpl0-gFvR3tth77m9vjC6QonuvU_YXERJIVlKqKImtUykgH8zasjKBU/s640/IMG_1160.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">and less than cooperative...<br />
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<tr><td class="tr-caption" style="text-align: center;">and less than worth the trouble...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">sigh....</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVw-nMPqanl46NxpqUaLeTZX2xtjTz8Vko3fs-IWrAo5hJ8t9fNijd2sG4M2HUsx2QkxkEvakFrDuoy72eabR3mxxETmD56kXFY5t9Krs2DSpC80iCTAO7fGejK0y9pg8zH6PNFSfqrJM/s1600/IMG_1168.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVw-nMPqanl46NxpqUaLeTZX2xtjTz8Vko3fs-IWrAo5hJ8t9fNijd2sG4M2HUsx2QkxkEvakFrDuoy72eabR3mxxETmD56kXFY5t9Krs2DSpC80iCTAO7fGejK0y9pg8zH6PNFSfqrJM/s640/IMG_1168.JPG" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And here we've managed to capture the elusive ginger unibrow.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtQhrePGipbKYVyb4H1rixe-McnmNgyN2e8QGN2H-7h1rWftVSFWuv1dRwjHOsF-dXiqsL7B4cQ1AeDQ7IhkPFP9_0EVUXQJCRHmldMylmH_LAQsc5QHnuoEaeGe6ClNk2xsUrYX66UFI/s1600/IMG_1170.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtQhrePGipbKYVyb4H1rixe-McnmNgyN2e8QGN2H-7h1rWftVSFWuv1dRwjHOsF-dXiqsL7B4cQ1AeDQ7IhkPFP9_0EVUXQJCRHmldMylmH_LAQsc5QHnuoEaeGe6ClNk2xsUrYX66UFI/s640/IMG_1170.JPG" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">meh seester!</td></tr>
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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://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJhXnUGvh8JZmhc6z_TszKpY6mwBB9wkHAjJ_FQdvkKC0-x1kMsMWJaFgpcL9MJe0ZuWy-9_Jjt6chGGbXWzmm0WfmjYQEVzKsj8vf74h6s22sUeqPNCZ4aVhlGaA9AlPSj2ryOY2YLbA/s1600/IMG_1169.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJhXnUGvh8JZmhc6z_TszKpY6mwBB9wkHAjJ_FQdvkKC0-x1kMsMWJaFgpcL9MJe0ZuWy-9_Jjt6chGGbXWzmm0WfmjYQEVzKsj8vf74h6s22sUeqPNCZ4aVhlGaA9AlPSj2ryOY2YLbA/s640/IMG_1169.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My friend Desi who is super awesome fantastic for coming over the day before and busting out some cake pops and helping me decorate and her husband George, who was kind enough to bring his own mustache.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuHzoKtonX3qIQ-bRvDhPQt7-nAxFFybrQxeoupV1NUoHRusNzRRIxWUaNs-czEYR_NrKSuV6eNaHnrzWSuZL7pRXkXmZfha6E7_rVnb9q0LCJi3ESmQFRl81ux5W12COZ8kPI553CjzU/s1600/IMG_1171.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuHzoKtonX3qIQ-bRvDhPQt7-nAxFFybrQxeoupV1NUoHRusNzRRIxWUaNs-czEYR_NrKSuV6eNaHnrzWSuZL7pRXkXmZfha6E7_rVnb9q0LCJi3ESmQFRl81ux5W12COZ8kPI553CjzU/s640/IMG_1171.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another B.Y.O.M.er (my dad) and my mom, and Andrew who couldn't be bothered to stop eating potato chips long enough to take this picture.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfITTJu8fiAACVl5Vi3qMiuAA4fUu6GmpxubAuI6RZwqwYEYNoNMd6uTkXGmFZ1YhpbwQx96eilT7y4-5e2-bl2c5kbpiJjfpEAmVwcmVS7qC4-0DnH9ZL99dJTcQxHO5m9ZlbcmJs7Y0/s1600/IMG_1167.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfITTJu8fiAACVl5Vi3qMiuAA4fUu6GmpxubAuI6RZwqwYEYNoNMd6uTkXGmFZ1YhpbwQx96eilT7y4-5e2-bl2c5kbpiJjfpEAmVwcmVS7qC4-0DnH9ZL99dJTcQxHO5m9ZlbcmJs7Y0/s640/IMG_1167.JPG" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Suh Cyeut!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-lLlhqvC97Nufr0jEizxNuEC6Iq08WeNv5qSG51SGqPk2PXXpso7MAjxYZLAmuOhAmVdlJFA3uIX2-AKV-EsM7NCoSHZb_X7Bq5_QInEyYyvAGNNJ0GCUqTPB2CjbDc7D-iJ1cHBqdDM/s1600/IMG_1187.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-lLlhqvC97Nufr0jEizxNuEC6Iq08WeNv5qSG51SGqPk2PXXpso7MAjxYZLAmuOhAmVdlJFA3uIX2-AKV-EsM7NCoSHZb_X7Bq5_QInEyYyvAGNNJ0GCUqTPB2CjbDc7D-iJ1cHBqdDM/s640/IMG_1187.JPG" width="426" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkTi-mS43EYIg0scpj_sc2ubFk5l11FKJiEKCZM0rbP2Cndbqkgsl8vhXpj7IuzYQ3FbpsntvdYxeKyzj1wmc83gqTh7SP1ih8qvBd3CSpUV75jfsLWJ7eWMeASLEcFrUQrRt3DdVJWZ8/s1600/IMG_1188.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkTi-mS43EYIg0scpj_sc2ubFk5l11FKJiEKCZM0rbP2Cndbqkgsl8vhXpj7IuzYQ3FbpsntvdYxeKyzj1wmc83gqTh7SP1ih8qvBd3CSpUV75jfsLWJ7eWMeASLEcFrUQrRt3DdVJWZ8/s640/IMG_1188.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So this is a fort built by "The Middle Scarlett", as Mister calls her. Mister torments her - all in fun, of course, and she loves it. She's behind the toy box, you can see her blue sock. I darkened her drawings a bit so you can see just how hilarious this little girl is.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga6pdnx-34axlipS1Iqe1oGJZEUjq6LVqLxlYK1mMOD6-mGRpTFmAZ-MyjevJusmBddDcqstHtl3f-whyoGPJe0szx8VU8JFDcsGkXuUfutTpoYRMhmnFVVpm6oIxz8GHHAwRlhqFECYY/s1600/IMG_1188edited.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEga6pdnx-34axlipS1Iqe1oGJZEUjq6LVqLxlYK1mMOD6-mGRpTFmAZ-MyjevJusmBddDcqstHtl3f-whyoGPJe0szx8VU8JFDcsGkXuUfutTpoYRMhmnFVVpm6oIxz8GHHAwRlhqFECYY/s640/IMG_1188edited.jpg" width="640" /></a></div>
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I told everyone who came, that presents were NOT necessary. Little has way more toys than we know what to do with or have room for. You can always donate to Little's League if you feel like you just HAVE to do something. Did anyone listen? NOPE. So now my house is completely overun with monster trucks, Thomas the Tank Engine items, various cars, remote control vehicles, things that make terrible loud noises, and I should probably buy stock in Duracell. Thank you all. I love you, Mister loves you though he'd never admit it, and most importantly - Andrew loves you. You guys rock our faces off.<br />
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The other change here is that I did enroll Little in preschool. He started this week and he goes on Tuesdays and Thursdays for 3 hours each. He receives physical therapy one day and occupational therapy the other. We're still keeping our precious Heady and Jiffy as private therapists here at the house once a week, too. Thank the Lord for Tricare (another on the pro column for staying in the Army if that's the choice Mister makes) bc we could never afford that much therapy out of pocket. <br />
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His first day was on Tuesday the 22nd and I almost stroked out all morning. I purposely dropped him off in the classroom before I actually enrolled him at the front office so that I would have to pull myself together and not sit in the car in the parking lot bawling my head off all day. Little was totally cool with my leaving him there. I told him I had to go and he said, "Ok! You will be back when school is over. Bye!" and gave me a smooch. I made it out the door, down the hallway, had the exit door in sight and........could do <i>nothing </i>to stop the tears. I cried like a fool all the way to my car and then sat there for 2 or 3 minutes and just let it go. I pulled it together after sternly yelling at myself (silently, of course - didn't want anyone to see me and call the cops about the crazy lady in the parking lot) to snap out of it and drove around to the front entrance I went to the office and got scolded by lady behind the desk for putting Little in class before enrolling him. I didn't care. I knew I did the right thing by making sure I had a way out of crying in the car for an hour. Then when I finished there, I felt the tears coming back so I texted my friend Whitney from that parking lot that I was headed to her house. Thankfully she was cool with it and I killed time with her until I had to pick him back up. His teacher said he did great! He only teared up once and he was a little hesitant to play with the other kids, but she said all that was normal for the "new kid". So we both handled his first day pretty well.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-q_fixOigxi9N-IgIBwepADhrXjAXISODKErl2ZzkLo-3ZfhrsDIvXy8h8GISAJQBNu7IrWy0JA5ZxJh6QJjC7D0fhUl1CIutnSunME2TVJ2jgVHm_pq4DbK-WhaWBDiO-XUYBJ1UADo/s1600/IMG_1198.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-q_fixOigxi9N-IgIBwepADhrXjAXISODKErl2ZzkLo-3ZfhrsDIvXy8h8GISAJQBNu7IrWy0JA5ZxJh6QJjC7D0fhUl1CIutnSunME2TVJ2jgVHm_pq4DbK-WhaWBDiO-XUYBJ1UADo/s640/IMG_1198.JPG" width="426" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1vR_d9lZhXRrbsmqU4SmTDWTdiEvd4QVzQB_ZOylV4E2qiIWa97ouhbXJfi9YP573WUZm-LfQiwd7XIrFhiDIcHtn1i3oxmZVws-6TeK3A5na_1gVr8E24-iuODS47slzfxDGhpbiGps/s1600/IMG_1196.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1vR_d9lZhXRrbsmqU4SmTDWTdiEvd4QVzQB_ZOylV4E2qiIWa97ouhbXJfi9YP573WUZm-LfQiwd7XIrFhiDIcHtn1i3oxmZVws-6TeK3A5na_1gVr8E24-iuODS47slzfxDGhpbiGps/s640/IMG_1196.JPG" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Don't you.............forget about me...............don't don't don't don't...........don't you.............forget about me..............Will you call my name............Will you walk on by....................I said la lalalalaaaaaaa lalalalaaaaaaa lalalalalalalalalalaaaaaaaaaa<br />
hahahahah! Sorry, he totally Breakfast Clubbed this one up all by himself.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtRx2CMuLdQVIsZAX7DYGtCIF4mvqz9B4PQ4O4YOguVu26JFn8gaYbtT7aslI86qDDokPP8lF53yek31AtBVbsDtCBx5XeIUTXwzJhS408cUrfRG46d6qlXj-9rR01Y9c3I_5G0Sokj_w/s1600/IMG_1194.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtRx2CMuLdQVIsZAX7DYGtCIF4mvqz9B4PQ4O4YOguVu26JFn8gaYbtT7aslI86qDDokPP8lF53yek31AtBVbsDtCBx5XeIUTXwzJhS408cUrfRG46d6qlXj-9rR01Y9c3I_5G0Sokj_w/s640/IMG_1194.JPG" width="426" /></a></div>
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His backpack didn't arrive in time so he had to use his lunch box instead.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp5-td9r9i5wCye2sLnks3IGexPWT02QXmESHKhnq6JCGVUcHHC0FIMvG0EvYXo_Z2oQGmNsjB-OjVOneUFPvq7GAXU_Q3CfvcZ7asX3ceYXDHkO2-Lq45g0CeMakCE15hmn9-ElZQpto/s1600/prek1stday2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp5-td9r9i5wCye2sLnks3IGexPWT02QXmESHKhnq6JCGVUcHHC0FIMvG0EvYXo_Z2oQGmNsjB-OjVOneUFPvq7GAXU_Q3CfvcZ7asX3ceYXDHkO2-Lq45g0CeMakCE15hmn9-ElZQpto/s640/prek1stday2.jpg" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hand full of popcorn and a Lego table before he even got his coat off. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiIKq0iMLRoEwGCjde8WKNwa_OEoEJSiskHd4AYpbFOkO_qxFHFTyYxp7jhelp9qMAMFVZB9J2s20VGLuKlYlR4uQhx4mhu4Reuoj4xDLPTKb2FVqhUaLh3kaPDYLPoImdl-PF34qXqfE/s1600/prek1stday.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiIKq0iMLRoEwGCjde8WKNwa_OEoEJSiskHd4AYpbFOkO_qxFHFTyYxp7jhelp9qMAMFVZB9J2s20VGLuKlYlR4uQhx4mhu4Reuoj4xDLPTKb2FVqhUaLh3kaPDYLPoImdl-PF34qXqfE/s640/prek1stday.jpg" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There's the door, Mom!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWkbiSWfc9SZM4Ug-QSEYU_noh_V9h9qtHVa-SkxzUJuWvdhlE1Y8Agd7HUoPDA1IJgX6iyxfNO0ksPGFoxFNcHOISWUFJBCmwHRTz7Y3R2V__N1AIXi31WcERkfcuuThS6NwpydLJT6Y/s1600/IMG_1211.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWkbiSWfc9SZM4Ug-QSEYU_noh_V9h9qtHVa-SkxzUJuWvdhlE1Y8Agd7HUoPDA1IJgX6iyxfNO0ksPGFoxFNcHOISWUFJBCmwHRTz7Y3R2V__N1AIXi31WcERkfcuuThS6NwpydLJT6Y/s640/IMG_1211.JPG" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The picture I had wanted to take the 1st day.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyoGqgxxMXelk-zEPq3bbLSJIHFr1mbuBJN1Bgf4FFn_IhpG4rsVHp2fQqjia4v97J3U61eQufaUBH46l7E6Hz4shFYXubVfr4TxNMBbTv96qrDVYeF35o0GzK5nI16H2nRx_ymLEYOiU/s1600/photo+(16).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyoGqgxxMXelk-zEPq3bbLSJIHFr1mbuBJN1Bgf4FFn_IhpG4rsVHp2fQqjia4v97J3U61eQufaUBH46l7E6Hz4shFYXubVfr4TxNMBbTv96qrDVYeF35o0GzK5nI16H2nRx_ymLEYOiU/s640/photo+(16).jpg" width="478" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">His school PT sent me this. He's made a little buddy already. Not shocked at all that it's a girl. Watch your man, Ayla.</td></tr>
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I believe another thing I promised myself I would do this year is to make time for myself and friends and life outside of Andrew - well, in about 2 hours, I'll be meting a group of gals from church for dinner sans Andrew. Big steps in just a few weeks. For the times, they are a-changin'.......<br />
<br />Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com7tag:blogger.com,1999:blog-6711926069563284329.post-39365710928599486032013-01-10T19:45:00.002-08:002013-01-10T19:45:28.478-08:00Video TimeIt's been a while since I posted videos of the little guy, so I thought I'd just show you what he's been up to. <br />
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He is walking like a champ these days - when he gets excited, he loses his balance and has to grab the wall a bit, as you'll see in this one, but he's got some speed! He also shows off his mad "jumping" skills.<br />
<iframe allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/xF5wwoDCKKQ?rel=0" width="560"></iframe><br />
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Here, he breaks it down to the musical stylings of a singing moose, courtesy of his aunt and uncle. The moose lives at Grandma's house. Forever.<br />
<iframe allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/h1pYuYn0ql0?rel=0" width="420"></iframe><br />
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Part 2 may be even funnier than part 1<br />
<iframe allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/d1T0umTZ0po" width="420"></iframe><br />
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Here he has a little fun with Dad in post lodging at Ft Lostinthewoods during the few hours where none of us had the <a href="http://www.blogger.com/"><span id="goog_136926466"></span>Death Virus<span id="goog_136926467"></span></a> a few months ago.<br />
<iframe allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/oCA5-tHyWQw?rel=0" width="420"></iframe><br />
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And this one speaks for itself....<br />
<iframe allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/k3FBQxfXTu4?rel=0" width="560"></iframe><br />
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I may have posted this one already, or maybe just on Facebook, but this is what he and his girlfriend were up to during church a few weeks ago.<br />
<iframe allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/jjUY9oxZ5-Y?rel=0" width="560"></iframe><br />
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Found someone he knew on tv!<br />
<iframe allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/ZpiVG2TnJPQ?rel=0" width="560"></iframe><br />
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And here he is completely misunderstanding how to play with a kitten.<br />
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<span style="color: blue; font-family: Verdana, sans-serif;"><b>This blog's featured Little's Leaguer is Kade! Thank you for your support, Cutie!</b></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpdqxttrnTsOKt6-jQwKrcFeo-vYcJt3I9O-quW06VoA_jzBbK2UH0-YvszsrJmghL9slucKYLI8xk6lN7DsaFSDOZKeHzOueHc0pmMBG5MbJz-gbUEZB-NWIJdpkL1rglkZzM6Kx6KSI/s1600/K+with+Andrew+shirt.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpdqxttrnTsOKt6-jQwKrcFeo-vYcJt3I9O-quW06VoA_jzBbK2UH0-YvszsrJmghL9slucKYLI8xk6lN7DsaFSDOZKeHzOueHc0pmMBG5MbJz-gbUEZB-NWIJdpkL1rglkZzM6Kx6KSI/s640/K+with+Andrew+shirt.JPG" width="478" /></a></div>
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<span style="color: blue; font-family: Verdana, sans-serif;"><b>And don't forget to donate to </b></span><b style="color: blue; font-family: Verdana, sans-serif;"><a href="http://www2.mda.org/site/TR/Walk/77-F6-755-LittleRockDistrict?team_id=12207&pg=team&fr_id=4445" target="_blank">Little's League for MDA's Muscle Walk 2013!</a></b>Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com2tag:blogger.com,1999:blog-6711926069563284329.post-9210345685060595342013-01-01T06:53:00.001-08:002013-01-02T13:05:28.440-08:00Goodbye to Sandra...MeSo I've never been big on New Year's Resolutions. I've never really seen the point. We all say we're going to change, but none of us usually do. One time I actually did quit smoking (2007), but that was about the 5th time that had been my resolution. Still going strong on that one, btw - 6 years now. Yes, I've had a few cigarettes since then, but only on certain social or ridiculously stressful occasions (like the day Little was diagnosed). But still, not a smoker anymore! :) <br />
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This year is different. This year, I have resolutions. 2012 has not been my best year. It's been downright hard. I have struggled with finding a balance between Duchenne and everything else and I have had some health problems (mainly in the form of headaches and migraines). I have been burnt out, mistakenly believing I am in this alone, I have not taken care of myself, and I have been incredibly selfish in my way of thinking about what needs to happen in the future. All of these things have caused me to lose focus of the person I need to be in the world and the wife my husband deserves. Until recently, I had no idea how deep into my own grief and worry I had spiraled.<br />
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So here they are, my New Year's Resolutions:<br />
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1. <b>Stand behind and beside my husband with whatever job decision he thinks is best when his contract with the army is up in 2014.</b> I have been so ready to run away screaming "Were freeeeeeeee!" when his enlistment is up in 2 years that I had been demanding that he do ANYTHING but re-up in 2014. I was convinced that Little could not live an Army lifestyle with the constant PCSing and finding new doctors and therapists and schools and friends (me too). I was adamant that it was time that we get to live near family in Arkansas - bc hey, I moved all the way to Alaska for him! Wasn't it <i>my</i> turn? Mister said we were only going to be in the army for 4 years.....we just hit 8. Yes, the army means total health care coverage for Andrew. Yes, it's a steady paycheck. Yes, it's job security. Yes, he'll be halfway to retirement when his contract is up. But I WANT OUT. Do ya'll see how selfish I sound? Well I didn't. Not until a few days ago. Not until some deep soul searching and hard praying. What is wrong with me? How dare I put my wants over my family's needs like that? That is <i>so</i> so very unlike me. I cannot believe I was putting added pressure on him by taking one of his options completely off the table then making him feel like I would hate anything else that didn't get us back to Arkansas. I feel stupid and mean and ignorant. How can I be so selfish as to refuse to consider a perfectly acceptable solution to our needs just because I don't like it? It's not about what I like or don't like, it's about what my son and husband need. So if Mister decides, even at the last day of his enlistment to stay in and submit a WOC packet, then I will applaud him for his honorable and intelligent decision and handle whatever that means for us, just as I always have.<br />
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2. <b>Make time for my marriage. </b>For the past year and a half, I have not been a wife and mother, I have been Andrew's caretaker. Andrew doesn't need a caretaker, he needs a mom. Mister doesn't need a roommate, he needs a wife. He needs someone to come home to who has more to talk about than genetics appointments and how we should break all of Little's crayons to promote a better grasp on them. The last time we left Andrew with a friend and went to dinner? Our anniversary. In June. And we were back before his then bedtime of 7:15. Way to go, Palmers. I want to be a wife my husband is excited to leave work for, not one he stays at work to avoid.<br />
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3. <b>Learn to be more like a Proverbs 31 wife.</b> Oh yes, that part of the Bible. Don't know what I'm talking about? Check out this link: <a href="http://www.biblegateway.com/passage/?search=Proverbs+31&version=NIV" target="_blank">The Wife of Noble Character</a> I am currently reading a book by Sara Horn called <u>My So Called Life as a Proverbs 31 Wife</u> and it's pretty eye opening. It's right up my alley, with her sarcasm and self deprication and introspection. But I am learning that I have not been the wife that God wishes me to be. I am supposed to lift my husband up and I don't always do that. He is a <b>good </b>man. I haven't necessarily treated him the way I feel about him this past year bc of how my headaches and medications and trying to figure out how to plan for Andrew's future and blah blah excuses have made me feel and act. Well it's time for me to cut that crap out and make sure he knows everyday that I know that he is a blessing in my life and that I love him more today than the day we took our vows. I need to learn how to let God lead instead of my pride or attitude.<br />
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4. <b>Learn to let go of Little a little.</b> This one is going to be very difficult, but I think preschool is going force it on me. I have to take a few layers of that bubble wrap off and let him be a child - even though it might kill me.<br />
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5. <b>Go to the dentist.</b> I can't believe I said that either. I may have to be fully sedated, but this is the year!<br />
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6.<b> Start counseling.</b> Not counseling other people, but going to counseling myself. I've been wanting to go since Little's diagnosis, I just haven't done it. But it's time. I can't do this alone anymore, I need to talk to someone who can help me figure out how to find the balance. Please don't expect me to come type it all here, what we talk about in the sessions (some stuff does remain private, believe it or not), but know that I'm going and I'm not ashamed. And if you go, you shouldn't be ashamed, either. Life is big and heavy sometimes and I am learning that sometimes we need help with the load. Heck, sometimes we even need someone to point out that we are carrying the load all wrong!<br />
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My migraines have been getting better, my medication for them seems to be working and I stopped taking my allergy meds which seem to be the cause of one of the other types of headaches I was getting - so that's awesome! I've been going to the Y pretty regularly now and working with a wellness coach and taking yoga and it all does wonders for my mood and self esteem, not to mention ability to let Andrew out of my sight for an hour or so at a time. I am feeling better, so I am hopeful that these resolutions all have a good chance at sticking - even the dentistry one (ohhhhhh dentist......).<br />
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So I am ushering out a difficult 2012 with hope that 2013 will be a start to a better way of life, a better sense of direction. I have hope that I can give my family a better version of myself - a version that they deserve. A version I wish I had been all along and am so sorry that I haven't been. I have gotten lost in Duchenne for a while, but I refuse to stay under the cloud. I'm coming back up this year. I promise.<br />
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<br />Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com2tag:blogger.com,1999:blog-6711926069563284329.post-15800617211351332942012-12-23T06:50:00.000-08:002012-12-23T06:51:41.601-08:00Christmas Card 2012<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;"><b>Merry Christmas!</b></span></div>
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The red one is my creation but "be Merry" was made by my friend, Jen, of <a href="http://www.facebook.com/plumpuddingdesigns?fref=ts" target="_blank">Plum Pudding Designs</a> and here is her <a href="http://www.artfire.com/ext/shop/studio/plumpudding" target="_blank">website</a>. She is fabulous!!!!!<br />
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I love, love, love, LOVE Christmas cards, so thank you to the plethora of folks who sent us theirs! We hope you have a wonderful Christmas!!!!<br />
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<br />Katherinehttp://www.blogger.com/profile/01476818192816233856noreply@blogger.com0