tag:blogger.com,1999:blog-1756259088244147902024-02-20T06:26:40.225-08:00Sunshine in a Hypotonic WorldLiving in the world of Rett Syndrome, celebrating all the little victories, taking life one day at a time and trying to keep a sense of humor about it all.RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.comBlogger140125tag:blogger.com,1999:blog-175625908824414790.post-83242744923291931402024-02-04T13:10:00.000-08:002024-02-04T13:10:21.779-08:00When Enough is EnoughWhen is enough enough? I don't mean throwing in the towel and not making sure things are properly addressed. I mean when do you stop trying to force your child into a mold that they just don't fit into. When do you stop trying to make their legs straight or their hands open? When do you stop focusing so much attention on their developmental progress and shift to maintaining where they are and making sure they know happiness and contentment? When does it become more about quality of life over quantity?<br /><br />Most people don't have to deal with these decisions regarding their children. They mostly speak about quality of life when discussing their parents as they age or grandparents. In my world that is not the case. We have to face these decisions at times least expected. Evie is only thirteen and I am already mulling these questions over in my mind. Struggling to find the answers. Researching the options. Talking to seasoned parents to find out when they reached that point and what advice they may have for me. <div><br /></div><div>Their advice, "It's different for everyone and you'll know when its time to reassess." </div><div><br /></div><div>At first, that doesn't seem like the most helpful advice, but it truly is. They are telling me that it is okay to have these questions and doubts about the direction her care and life are going. They are encouraging me to dig deep and really decide what is in her and MY best interest. Which may sound selfish to some, but we are in this together and I am just as affected as she is when it comes to her care. They have given me permission to consider myself in the equation. And that is ok. That should be the norm in our world.</div><div><br /></div><div>We sacrifice much of ourselves to parent our children. We stretch beyond anything imaginable and adapt to circumstances we never imagined. We rise up to meet the day not knowing what it will bring and knowing at the same time it could be the end of life as we know it. We live in a constant state of trauma and crisis. All the while putting a smile on our face, calming our own fears, swallowing our worries, and desperately hoping those feelings don't cross over to our children who rely on us for stability and strength.</div><div><br /></div><div>I'm here to say, if you are beginning to have second thoughts about all the "extras" you feel you have to do, maybe, just maybe, it is time to take a step back and hit the pause button. Reevaluate what your goals are and whether the actives you pursue are adding or subtracting for what is best for YOUR child. It is ok to hit pause. Discuss the options and slowly add in what makes sense for your family and specifically for you and your child. <br /><br />You owe no one else an explanation for your decisions. Not one single person. I've often said that when Evie is able to talk with me about the things I have given permission to be done to her body I better be able to justify every single scar, every test, every decision. She is the only one I have to answer to and one day I hope to hear her thoughts on my decisions. Until then, I will continue to make the best decision I can based on what I know and see right in front of me. </div><div><br /></div><div>I am deciding to hit the pause button, dial things back, and rediscover the joy that life offers to both of us.</div>RettMomFLhttp://www.blogger.com/profile/18322097498021325477noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-57313870105431088312019-06-10T05:58:00.000-07:002019-06-10T05:58:13.005-07:00Up, In, Out, Down<br />
<div class="MsoNormal">
It’s late. The sun has long set and Evie has surrendered to
sleep. Her body is the most pliable when she is asleep. She doesn’t fight me as
hard when I work with her legs. After years of sitting, her knees have become
stiff, not too bad though. I’ve seen much worse. It makes it difficult to get
an accurate measurement of her length. I start working her legs a little bit
doing some of the movements I have done during my gym classes. I guess I hope
it will loosen the tightness. It probably won’t. But I try anyway.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Up, in, out,
down.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Over and over. Smooth and slow measured movements. It’s quiet. I’m left
to my thoughts while my hands manipulate her legs. I realized I’m living a
comedy routine once aired on Amy Schumer’s show years ago. It was a bit about
not really wanting to work out and if you were rich enough you could just pay
someone to move your body for you. People laughed in amusement. In this moment,
it is not as amusing as I may have thought 9 years ago. I must help my daughter
move her body. Everyday. We attend therapy where other people help her move her
body. When she is in school, her teachers, aides, and therapists help her move
her body. If we don’t, muscles grow weaker, they shrink, they tighten, they
hurt, and skills we fight hard to maintain slip away.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Up, in, out, down.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A pang
of sadness washes over me as I move her legs. What would these legs have done
if not for Rett? Run up and down a soccer field? Help her twirl in a ballet
recital? Propel her onto the pommel horse at gymnastics. How many scraped knees
would I have kissed and bandaged by now? Would she have used those legs to
steal a base during a ballgame? Climbed the spiraling steps of a lighthouse?
Will they stay strong as she ages? Will they ever be strong enough for her to
stand? Take a step?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Up, in, out, down.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
First the left, then the right. Moving
her legs to the soft sound of her even breathing. I finish exercising her,
start her tube feed, and tuck her in bed. She stirs a little, but her eyes
never open. She is completely calm and unnaturally still. Sleep is where she
finds the most peace and where I find myself the most restless. The morning
brings another day of helping her move and live the best life we can offer her.<o:p></o:p></div>
<br />RettMomFLhttp://www.blogger.com/profile/18322097498021325477noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-69352354130685542952018-09-09T13:02:00.000-07:002018-09-09T13:02:00.805-07:00It's in the GenesA lot of exciting things are happening in the world of gene therapy. This is especially true for families like mine who are battling the debilitating effects of <a href="https://www.girlpower2cure.org/our-cause/what-is-rett-syndrome/" target="_blank">Rett Syndrome</a> every day. I don't typically write about such topics because honestly, it's not my wheelhouse. I don't do science jargon. It tends to overwhelm me, it feels like years away (<i><span style="color: orange;">a too promising to be real</span></i>), and I just need it broken down. Today is a new day. It is a day to get out of my comfort zone and talk about something that has the potential to radically change our lives.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9F8WVMBuRuFHA4-nQRwNU9kx1mGYVdfZmanDfSTXoCLLBeH1n3ifA9R4GxCBwBXlTZKo_ixpHDcMERdpH6s45ELYgwN22mrugLnFOx0hYad4B1qydFSKbc-9UGiVRoBu-pBqn38HayhU/s1600/IMG_3318+%25281%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1068" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9F8WVMBuRuFHA4-nQRwNU9kx1mGYVdfZmanDfSTXoCLLBeH1n3ifA9R4GxCBwBXlTZKo_ixpHDcMERdpH6s45ELYgwN22mrugLnFOx0hYad4B1qydFSKbc-9UGiVRoBu-pBqn38HayhU/s320/IMG_3318+%25281%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Evie - July 2017</td></tr>
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I have been loosely following the developments in gene therapy for the last year. Research and breakthrough developments have been going on for much longer than that, but I refused to take much interest because I felt like it was going to give me false hope. That was the last thing I needed...false hope. There are days that keeping a hold on the tiniest bit of hope is difficult and I wanted to make sure I was holding onto something that was safe and secure.<br />
<br />
Fast forward to today and I feel differently. <b>A LOT</b> differently.<br />
<br />
Gene therapy is a strong contender as a treatment and potential cure for Rett Syndrome. That's <b>HUGE!</b> Imagine what that could mean for thousands of families and what it could mean for other disorders? What will it mean for Evie? Will she walk? Will she talk? Will she be able to brush her own hair and save me the hassle (<i><span style="color: orange;">yes, it is a hassle, she HATES it</span></i>)? Will it correct her dystonia?Stabilize her hands so she can feed herself? Will it open up all those doors that slammed shut on our D-Day?<br />
<br />
The answer:<br />
<br />
We don't know.<br />
<br />
Yet...<br />
<br />
Those three letters hold the key.<br />
<br />
<div style="text-align: center;">
<b><span style="font-size: large;"><i>Y - E - T</i></span></b></div>
<br />
Sometime within the next year, we hope to have the first gene therapy trial for Rett Syndrome underway. Those selected to participate in the trial will be the first girls with Rett that will pave the way and hopefully unlock a new hope for all the families coming behind them. It is a long term commitment for the participants and (<i><span style="color: orange;">crossing my fingers</span></i>) we hope to be in that first group.<br />
<br />
There are many that aren't comfortable being the first ones to try something unproven. We struggled with this decision and after asking some hard questions (<i><span style="color: orange;">like will we kill her just trying this</span></i>) and talking it over with trusted family and friends, we went all in. And I mean <b>ALL IN!</b> No matter what is asked of us, we will make it work. The chance that Evie may regain even a fraction of function is enough to compel us to toss our name in the goblet of fire.<br />
<br />
Besides, isn't this why I runDisney every single year for the past four years and have already signed up to run with Team GP2C again in 2019? Even though I feared false hope, I still <i><b>had</b></i> hope and trumpeted belief that a cure is coming. It has always been a matter of <b><i>when</i></b>...not if.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4eGOVl-uItVvQZ_6b4kq5L-NiAGgRVM685aEU3RDhqMS9S8qvzM9UVajPKYXKE_g_6GCE4ZpmzQ8oQa1WjIiJ3xdTA5n9BH4SGKRz3wALXHpMEm-irim4GQB42n96mgp-aBrtMyGd5zg/s1600/IMG_3546.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4eGOVl-uItVvQZ_6b4kq5L-NiAGgRVM685aEU3RDhqMS9S8qvzM9UVajPKYXKE_g_6GCE4ZpmzQ8oQa1WjIiJ3xdTA5n9BH4SGKRz3wALXHpMEm-irim4GQB42n96mgp-aBrtMyGd5zg/s320/IMG_3546.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rapunzel & Pascal running Disney Princess 5k 2018</td></tr>
</tbody></table>
<br />
As I write this, there are families living with <a href="http://www.curesma.org/sma/about-sma/" target="_blank">Spinal Muscular Atrophy (SMA)</a> that are undergoing a similar <a href="https://www.avexis.com/research-and-development" target="_blank">gene therapy trial</a> through <a href="https://www.avexis.com/" target="_blank">AveXis'</a> (which is now a part of the <a href="https://www.novartis.com/" target="_blank">Novartis</a> family). We are all watching closely and with bated breath. Even a glimmer of hope is enough to keep me moving forward. In the meantime, I'm waiting with Evie's name already written on a slip of paper ready to toss it into the goblet when the time comes.<br />
<br />
If you'd like more information about Rett Syndrome, the gene therapy information, or how to help/participate please check into the links below.<br />
<br />
<a href="https://secure.qgiv.com/event/account/651860/" target="_blank">For the Love of Evie</a> - As I mentioned, we run with Team GP2C every year in the Disney Princess Half Marathon and if you would like to make a donation in honor of Evie, you can do so at the link provided. Team GP2C is 150+ members strong and we will run #untiltheycan.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjigG_eoiURnROxbNtP4k7kkxuz9NVEjMjWUa29q_HEJJa8ASUgqREq6maXQotKi_86K2hIZ8kYO3akxdXGAdb27huyf8PYnOL3I0XkDXXfQMm1-IVMKfAOKC0MyrWF1ZbsHYPM1HyhEvs/s1600/IMG_3802.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="963" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjigG_eoiURnROxbNtP4k7kkxuz9NVEjMjWUa29q_HEJJa8ASUgqREq6maXQotKi_86K2hIZ8kYO3akxdXGAdb27huyf8PYnOL3I0XkDXXfQMm1-IVMKfAOKC0MyrWF1ZbsHYPM1HyhEvs/s320/IMG_3802.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rett Mom Power!<br />Making every step count in the Disney Princess Half 2018.</td></tr>
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<br />
<a href="http://www.rareneuro.com/" target="_blank">Center for Rare Neurological Diseases</a> - Dr. Daniel Tarquinio operates the CRND just outside of Atlanta and currently works with Rett Syndrome, <a href="https://pitthopkins.org/" target="_blank">Pitt-Hopkins</a>, <a href="http://www.lgsfoundation.org/" target="_blank">Lennox Gastaut</a>, and many other rare neurological disorders. You can contact his office at the link listed.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0QW02Lhj9v5rtIY5AWxuCzzfQDpYofeQw_DG444gknzMrfTysvtceI-DKk-ADgnR5la6pAdofUMpho7CTRhAolxPbDHiolVsB1zw2PwMiZksQcegbC_qpeVh4vFwFRkPxL7rgJj87S9Y/s1600/IMG_6235.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="671" data-original-width="1500" height="142" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0QW02Lhj9v5rtIY5AWxuCzzfQDpYofeQw_DG444gknzMrfTysvtceI-DKk-ADgnR5la6pAdofUMpho7CTRhAolxPbDHiolVsB1zw2PwMiZksQcegbC_qpeVh4vFwFRkPxL7rgJj87S9Y/s320/IMG_6235.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Daniel Tarquinio</td></tr>
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<br />
<a href="https://reverserett.org/the-future-is-now/" target="_blank">Rett Syndrome Research Trust: The Future is Now</a> - Welcome to the future of medical practice. What was once thought to be a science fiction dream is becoming a reality a lot sooner than anyone anticipated. This means the FDA has to be on top of the advancements and making sure these treatments are safe and effective.<br />
<blockquote class="tr_bq" style="text-align: center;">
<span style="font-family: inherit;"><em style="background-color: white; border: 0px; box-sizing: border-box; font-size: 17px; font-stretch: inherit; font-variant-east-asian: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">“Gene therapy represents one of the most promising opportunities for developing highly effective and even curative treatments for many vexing disorders. Some of these products are almost certainly going to change the contours of medical practice, and the destiny of patients with some debilitating diseases.”</em></span> </blockquote>
<blockquote class="tr_bq" style="text-align: center;">
<span style="font-family: inherit;"><em style="background-color: white; border: 0px; box-sizing: border-box; font-size: 17px; font-stretch: inherit; font-variant-east-asian: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">~Dr. Scott Gottlieb</em></span></blockquote>
RettMomFLhttp://www.blogger.com/profile/18322097498021325477noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-60287612354714332152017-07-05T09:03:00.001-07:002017-07-05T09:03:45.258-07:00When You're a Special Needs Mom Who Had Special NeedsI am exhausted.<br /><br />I say this throughout the day because there is no other way to explain how I feel and even that doesn't do it any justice. Most will think that my exhaustion is related to my busy schedule and physical demands placed on me by Evie. Yes, that is part of it, but there is so much more going on. My body has been attacking me since the birth of my daughter (<i><span style="color: purple;">2010</span></i>). When I need it the most, it is in a state of rebellion and each battle destroys a little bit more of my defenses.<br /><br />First, it was my thyroid. No matter what test was administered it always showed that it was functioning perfectly. But it was also growing. A lot. Like two and a half times normal size for a total weight of 75 grams when they removed it. I almost lost my voice. It has taken years for my vocal chords to recover and even now they are not at full strength. That is what hurt the most. My ability to sing songs to my daughter ceased to be because it hurt. So I hummed. Not the same though.<br /><br />Losing my thyroid required that I start a daily regimen of synthetic thyroid hormone pills. Great! I'll die if I don't have them. Awesome! Who doesn't love being bound to medication for the rest of your life. But I take them. Then the exhaustion set in. Falling asleep at a stop light is not my idea of optimal balance. It took over a year of constantly saying I still didn't feel right and was too tired before anyone actually listened. My first doctor suggested my extreme fatigue was due to our special needs life. Um...No. That is not an acceptable answer. I found a new doctor. A change in medication (<i><span style="color: purple;">from synthetic to a natural desiccated thyroid</span></i>) and I started to feel better for a quite awhile. And then I didn't. (<i><span style="color: purple;">seriously, it all becomes a blur</span></i>)<br />
<br />
The fatigue returned. My body just felt weak and tired all the time. I started feeling heart flutters/palpitations. My limbs felt heavy after 20 minutes of exercise. Just everyday simple tasks would leave me out of breath. I thought my thyroid medication was not longer working. I repeatedly mentioned it to my doctor and nothing changed. No additional tests were ordered. I carried on.<br /><br />The fatigue really started being a problem again after I underwent emergency surgery in 2015. Afterwards, a post op infection basically placed me on bed rest for 4-6 week which was interesting to manage and could not have been done without help from my family and Evie's teachers.<br /><br />Many parents will tell you that they will lose track of their own health needs because they are overwhelmed by the needs of their child(ren). I was no different. I'm so over going to doctors with Evie that I just don't have the energy to do for myself. I also know that when I go they will want to do something (<i><span style="color: purple;">tests</span></i>) or send me somewhere else (<i><span style="color: purple;">specialist or therapy</span></i>) and I seriously don't have time for all that. So, this mystery condition just went unchecked despite my bi-annual appointments with my endocrinologist.<br /><br />I finally decided I needed to find out what was wrong. I thought I was going to have a freaking heart attack or something. I made an appointment for a physical with my primary care. I gave my blood. They ran their tests. Then I was told I am anemic (<a href="http://www.mayoclinic.org/diseases-conditions/iron-deficiency-anemia/home/ovc-20266507" target="_blank">iron deficiency anemia</a>). Not just a little. A lot. I have to take iron pills every day and more blood work is in my near future. Lots and lots of blood work.<br />
<br />
But I wasn't going to cave into this new condition. I told my doctor I am training for a half marathon and would I be able to run. She said it would be best if I didn't until we determined what was causing my anemia and my levels were back up. Naturally, I ignored her.<b><span style="color: orange;"> I am SUPERWOMAN!</span></b> A little low iron (<i><span style="color: purple;">14...should be about 40 at its lowest</span></i>) and low red blood count (<i><span style="color: purple;">8.1...should be between 12-15</span></i>) wasn't going to stop me. Did I mention I'm stubborn and hardheaded?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcR00ik1yvcSBfao_N0iV525n0UrycNTqdgIPFlAKQA08W7xp4TZq-Jaek3BLYVYLrrmu5CYxP1QGXh6SEVpUlpY6hUCmJS8s6qS_jgwZAo-oJk_zQ09wJNvsEQN4CNsWypcePTTyV57k/s1600/IMG_0975.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcR00ik1yvcSBfao_N0iV525n0UrycNTqdgIPFlAKQA08W7xp4TZq-Jaek3BLYVYLrrmu5CYxP1QGXh6SEVpUlpY6hUCmJS8s6qS_jgwZAo-oJk_zQ09wJNvsEQN4CNsWypcePTTyV57k/s320/IMG_0975.JPG" width="240" /></a>I completed a 5k while pushing 80+ pounds (<i><span style="color: purple;">Evie and a jogging stroller</span></i>). The course included a bridge and a 5 or 6 story spiral ramp. (<i><span style="color: purple;">I don't run the entire course. I do intervals of walk/run.</span></i>) I couldn't breath after I crossed the finish line. I was gasping for air like a fish out of water. I am <b><span style="color: orange;">NOT</span></b> superwoman. I am a special needs mom who now has special needs of her own. I don't know what this may mean for us in the long run. My body's betrayal has wounded me. When I need my body the most and my life demands more from it than ever before, it has decided to fail me. Repeatedly.<br /><br />Admitting that I can no longer keep up the pace I have been forcing myself to live is difficult. I may have to drop out of my half marathon. I may have to start taking naps more frequently. I may have to get transfusions. It is not just as simple as eating more spinach and popping an iron pill. If only (<i><span style="color: purple;">sigh</span></i>). What I do know is I may not be superwoman, but I am going to continue living like I am and not let these physical setbacks stop me from being the best I am able to be. Right after I take a quick nap.RettMomFLhttp://www.blogger.com/profile/18322097498021325477noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-63561128974602000792017-02-14T10:36:00.001-08:002017-02-14T10:47:05.912-08:00Growing a Girl Scout...Get Your Cookies Here!<div style="text-align: left;">
Evie is officially a Daisy. We joined a local Girl Scout troop that her best friend is a member of and it has brought another layer of chaos to our schedule, but it has also brought her another social outlet with peers her age. At our last meeting the girls learned what makes Evie laugh (coughs and sneezes) and enjoyed making her giggle at their antics (it sounded like everyone had a cold). It's a good thing.</div>
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She is selling cookies, attending meetings, and this weekend she will be a part of her first Girl Scout activity, "Let's Grow" World Thinking Day. We will be exploring tables set up by other local troops and each one will feature a different country. Our troop will be sharing information about France and making crepes (I'm in charge of whipped cream). <br />
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Would it be easier to keep her home? Sure. But what fun is that. We are committed to helping her live a full life complete with enriching experiences and exciting adventures. I don't think I would have considered signing her up a year ago, but after one night with a troop and a little encouragement from a friend we jumped in. There are many obstacles to overcome for both of us (what's new) and we will troubleshoot them as they come. She can definitely go camping, but white water rafting is off the table (maybe a canoe...we'll see).<br />
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The Girl Scouts welcome ALL girls. That includes Evie and every little girl that is similar to her. It takes a little extra effort, but for us it is worth it. Now if only we can make sure she stays awake during the entire meeting.<br />
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If you'd like to help Evie reach her cookie sales goal please place your order on her site:<br />
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<a href="https://digitalcookie.girlscouts.org/scout/eveyln850663?preview=true" target="_blank"><span style="font-size: large;">Evie's Cookie World</span></a></div>
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Her troop has voted to spend the night at the local zoo and learn about the animals there. Their second option will allow them to pet and feed dolphins. These are great experiences for young girls and thank you in advance for your support!<br />
<br />RettMomFLhttp://www.blogger.com/profile/18322097498021325477noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-73472294339396294152016-04-05T08:25:00.001-07:002016-04-05T08:25:06.781-07:00#BentNotBroken: Curvy No More<b><span style="color: orange;">*Disclaimer:</span></b> This is a longer post then I typically write. It contains a few images that some may find upsetting. I do not feel like I can adequately share this experience with you without sharing the images. I promise they are not overly graphic.<br /><br />Evie is now two weeks post-op.<br />
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It feels like we just came home yesterday and at the same time it feels like it all happened months ago. Maybe sleep deprivation does that to a person. Makes them loose all sense of time.<br />
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I want to tell you that I've been an emotional wreak. That I have wept and wailed. That anger and fear consumed me leading up to and after the surgery. But I would be lying.<br />
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I felt at peace. Sure I worried a bit. Was this the right decision? Would she forgive us for the pain that was coming? Does she understand why this was the path we (<i><span style="color: purple;">her parents</span></i>) chose for her? But those were just passing worries that fled back into the darkness that is fear whenever I remembered that I have no control. This wasn't no longer in my hands. That, in truth, it has never been in my hands.<br />
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When I acknowledged that I had absolutely no control in this situation, that is when peace started to take over. While binge watching <a href="https://youtu.be/PbT_5qOOM8k">Longmire</a> (<i><span style="color: purple;">video clip</span></i>) on Netflix a character put into words how I was feeling:<br />
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<span style="color: orange; font-family: inherit;"><b><i>"Peace is not the absence of conflict. It is the acceptance of conflict."</i></b></span> </div>
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I accepted that we would end up at this crossroads many years ago. We hoped and prayed that it would be when she was older, but with each x-ray that hope dimmed a little more. So this was the path we chose to take and we have no regrets. The acceptance of this inevitability, the acknowledgement that it was not in my hands, the knowledge of whose hands it was in, and my mad research skills came together and peace blossomed from the inside out.</div>
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Now let me get down to the nitty-gritty stuff...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq0TSAS-oBT6EfUxzAIHDsfqAa2UAV3ccZnsQZtF0kthCVO9Omjq7rUoObOr2zWtEswQbi6Ao6KJGE3VHrAMzE1YXZudrVs5MOyQ1ATI9m0pVMLcgE9rT8e7EsRuxTiUgnOGSvStuVdPk/s1600/IMG_4789.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq0TSAS-oBT6EfUxzAIHDsfqAa2UAV3ccZnsQZtF0kthCVO9Omjq7rUoObOr2zWtEswQbi6Ao6KJGE3VHrAMzE1YXZudrVs5MOyQ1ATI9m0pVMLcgE9rT8e7EsRuxTiUgnOGSvStuVdPk/s200/IMG_4789.JPG" width="200" /></a>We checked into Wolfson's the night before her surgery. It looked like we were moving in and essentially we were since we were there for 8 days. The PICU team came in to get Evie's IV's placed (<i><span style="color: purple;">this took longer than anticipated</span></i>) and they had to get at least two that night (<i><span style="color: purple;">a third would be placed the next morning</span></i>). She smiled and giggled the entire time! When it comes to the traumatic stuff for kids they have people come in the room (<i><span style="color: purple;">if available</span></i>) to help distract the child. It worked like a charm! <span style="color: orange;"><b>*Tip</b></span><b><span style="color: orange;">:</span></b> Try to make sure your child is well hydrated for easier IV placement.</div>
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The next morning we were off to pre-op to wait and for a minor buzz cut (<i><span style="color: purple;">sorta</span></i>). I have a few things that I like to send with Evie when she goes into surgery (<i><span style="color: purple;">yes, we've done it often enough that we have surgical support items</span></i>). Those items include: her quilt with pink and orange flowers our dear friend Leslie made for her, a crocheted lovie (<i><span style="color: purple;">they help keep her from mouthing her hands</span></i>) from my mom, and her best friend Moe-Moe the monkey. I forgot to slide her superman leg warmers on before we left the room so they missed this trip (<i><span style="color: purple;">oops!</span></i>). You'll see the haircut in a bit.</div>
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<tr><td class="tr-caption" style="text-align: center;">Bye sweetheart, we'll see you soon!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4sWwyu7qJy2jzPKIV9sQXaUSHxVSrTkoEdkNboUMKN9VWdHktylLFiIXNtV-61M2qi8pxEduwSwwJjPFPQUvHKC7obeuBVJdWIXIZ5MpavTVGHv9Vj9ILsGHJZt0fru_lFHfQzNCZL3o/s1600/NATALIE-DORMER.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><div style="text-align: left;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-KcC_g8cX-G7W6ipVe8LR_9rTNjCKGPPViznLyptDxiNZjiy-RLgC1B8AteVb_el4OBSPLzhsqcq7YRZ-efNGZAwtEk8B-wQ1uYodSkAoNjUjngc4xug0rfeaTxh0fxH25u-2UgyGPA/s1600/IMG_4804.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-KcC_g8cX-G7W6ipVe8LR_9rTNjCKGPPViznLyptDxiNZjiy-RLgC1B8AteVb_el4OBSPLzhsqcq7YRZ-efNGZAwtEk8B-wQ1uYodSkAoNjUjngc4xug0rfeaTxh0fxH25u-2UgyGPA/s200/IMG_4804.JPG" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-KcC_g8cX-G7W6ipVe8LR_9rTNjCKGPPViznLyptDxiNZjiy-RLgC1B8AteVb_el4OBSPLzhsqcq7YRZ-efNGZAwtEk8B-wQ1uYodSkAoNjUjngc4xug0rfeaTxh0fxH25u-2UgyGPA/s1600/IMG_4804.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a>I was very fortunate to not be alone while waiting for the surgery to be completed. Of course her dad was there and so were my parents. I don't think there was anywhere else they would have been. Times of uncertainty brings our family, friends, and our Rett family together. Those we love and those that love Evie texted, called, and emailed us their encouraging words, prayers, and healing vibes (<i><span style="color: purple;">ya bunch of</span></i> <i><span style="color: purple;">h</span></i><span style="color: purple;"><i><span style="color: purple;">ippies</span>! love ya!</i></span>) My dear friend <b><span style="color: orange;">Hot Mess</span></b> came to sit with us during the entire procedure! We all laughed and cracked jokes. It's how we deal with stressful events.<br />
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<a href="http://orthodoc.aaos.org/ericshirleymd/about.cfm">Dr. Eric Shirley</a> was able to place the <a href="http://ellipse-tech.com/magec-us-spinal-bracing-and-distraction-system/">MAGEC growth rods</a> in Evie's back. This is a great thing because it means lengthening procedures are controlled externally using a magnetic tool that will allow him to extend the rods as she grows (<i><span style="color: purple;">and trust me this girl grows!</span></i>). The surgery went really well and we anticipated 5-6 hours, but she was done in about 4 and a half! The surgery was a success! We were able to see Evie shortly in her private PICU suite.<br />
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<tr><td class="tr-caption" style="text-align: center;"><a href="http://ellipse-tech.com/">Ellipse Technologies</a>: MAGEC Rod & Controller</td></tr>
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Once she was settled and we spoke with her surgeon, we were able to see Evie. It wasn't the easiest moment. I couldn't pick her up and cradle her in my arms. I also knew that jostling her too much would hurt her. So we all settled for letting her squeeze our fingers and stroking her hair. She was still intubated when we saw her. They also brought in a portable x-ray machine to take an image of her spine. This gave us an internal visual of how drastic a change these growth rods made for our little girl. The external change was apparent immediately and we could barely believe our eyes. She was so straight and long! Heck, we were all so accustomed to seeing her curled over that seeing her straight felt like someone was playing a cruel trick on us.<br /><br />
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<tr><td class="tr-caption" style="text-align: center;">Getting her x-ray done.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Before at 70 degrees<br />After with her spinal upgrade.</td></tr>
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Now you may be asking yourself why Evie needed to have her hair shaved off on the sides (<i><span style="color: purple;">yes, both sides</span></i>) for a back surgery. One word...Halo.</div>
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<tr><td class="tr-caption" style="text-align: center;">We call it the Dr. Shirley special. <br />I think he was inspired by Natalie Dormer from The Hunger Games.</td></tr>
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Evie was placed in a halo for the surgery to secure her position and keep her body held as straight as possible. In order to achieve this they had to place her in traction (<i><span style="color: purple;">just for the procedure</span></i>) and screws were used to hold the halo in place (<i><span style="color: purple;">four to be exact</span></i>). This was not done before she left us (<i><span style="color: purple;">thank you Jesus</span></i>) so I don't have a picture of what it looks like and the images I've found online aren't really right (<i><span style="color: purple;">it wasn't gravity traction</span></i>). As a result, she has two little boo-boo's on her forehead and one on each side of her head. We've made an appointment for Friday next week to have her hair style updated. Embrace the buzz cut!</div>
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The first night in PICU was filled with the beeps from various machines, nurses and assistants coming in to check vitals and administer medicine, and me never really getting comfortable. That's hospital life for ya! Our goal was to extubate Evie that evening. Well, that happened...and it wasn't pretty.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicOHWzqDUhuMBRgciXnK1vbOfzVaGzFqqytc9Bg6ARK8FLwqvoIOUdjP1WCSCKIcZg-kk4q7oHlXOxqEMqkiGQqs-8mWynCMTsoJzm1K1MJUEOpENxstsns6Vxd_Qlj_t8y8bmeAuj6O0/s1600/IMG_4819.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicOHWzqDUhuMBRgciXnK1vbOfzVaGzFqqytc9Bg6ARK8FLwqvoIOUdjP1WCSCKIcZg-kk4q7oHlXOxqEMqkiGQqs-8mWynCMTsoJzm1K1MJUEOpENxstsns6Vxd_Qlj_t8y8bmeAuj6O0/s200/IMG_4819.JPG" width="200" /></a><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx42pRSw6HOVITnLFK18fbm-9Qpgs3OQ-ursWW6WEjhUn7TztEGQwIrYrL-sY_4nkdWZHfJpC-vqF4So9BJvkW5VxF8pLZTuZxOBVuIaGJOcbwvZTiSMIajcTwCb15zcmxbvCaUltunoI/s200/IMG_4828.JPG" style="cursor: move; margin-left: auto; margin-right: auto;" width="200" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Extubation was successful and a bit painful for Evie.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZbMkDK-_3V8BgB1oduAaWWcB6dO0nQRRLYmT3FDRElLRWNqjzllJqm4XgVCtWJ1-QpggcXdwdii3ut5M1jaI4dAxWZiK9BcsLbFNS-bZ9eh4sPyL_ZQ8BFZZAFDtDGpMC4I0QLcYaTFY/s1600/IMG_4835.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a>Her little face was red and swollen, which I was prepared for before surgery. Hearing her soft whimper was like music to my ears. It was like he<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZbMkDK-_3V8BgB1oduAaWWcB6dO0nQRRLYmT3FDRElLRWNqjzllJqm4XgVCtWJ1-QpggcXdwdii3ut5M1jaI4dAxWZiK9BcsLbFNS-bZ9eh4sPyL_ZQ8BFZZAFDtDGpMC4I0QLcYaTFY/s1600/IMG_4835.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZbMkDK-_3V8BgB1oduAaWWcB6dO0nQRRLYmT3FDRElLRWNqjzllJqm4XgVCtWJ1-QpggcXdwdii3ut5M1jaI4dAxWZiK9BcsLbFNS-bZ9eh4sPyL_ZQ8BFZZAFDtDGpMC4I0QLcYaTFY/s200/IMG_4835.JPG" width="150" /></a>aring a newborn cry for the first time. A sense of relief flooded over me. Unfortunately, her breathing wasn't as strong as everyone would have liked and in order to maintain her oxygen levels she was placed on a bi-pap. Whee! This is obviously not what we would have wanted, but better this than intubation again. It was removed the next day for which we were all thankful and happy.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: 1em; margin-right: 1em; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicOHWzqDUhuMBRgciXnK1vbOfzVaGzFqqytc9Bg6ARK8FLwqvoIOUdjP1WCSCKIcZg-kk4q7oHlXOxqEMqkiGQqs-8mWynCMTsoJzm1K1MJUEOpENxstsns6Vxd_Qlj_t8y8bmeAuj6O0/s1600/IMG_4819.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><br /></a></td></tr>
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<b><span style="color: orange;">*Tip:</span></b> Evie does not expel excess air the bi-pap pushes into her body. As a result, she developed excess air trapped in her intestinal tract which caused some distention of her stomach (<i><span style="color: purple;">she swelled up like a ripe watermelon</span></i>). We know now she needs to be vented if she is ever on a bi-pap again, which can be done through her g-tube with her tube extension or a <a href="http://www.corpakmedsystems.com/gastric-decompression-devices-page/farrell-valve/">Farrell bag</a>.<br />
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Once the bi-pap was off, her pain well managed, and she wasn't sleeping we managed to get a few smiles, a faint giggle from her, and a attempts at mouthing her lovie. All joyfully celebrated! These were good signs. She was also quite the social butterfly and everyday of our stay someone came to visit her (not just the nurses, therapist, and doctors). By day two the physical therapists came to get her sitting in her wheelchair. That was a three ring circus because of all the cords, tubes, and iv's stuck in her. Sheer will and determination on their part made it happen and of course I photographed it!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcDdIUeBN8wbXAHMu91S4eREgCLNeUgfY9K6euYqj8D-5aoBhiqx7JRoBBiY7UzESEH6yOq4imDwY7BCZLrT-hUb1vFQu6fzQJKMFI1w3wBQETq73UpjOozG-1sTfGILJaf-vf2jhbKWA/s1600/IMG_4847.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcDdIUeBN8wbXAHMu91S4eREgCLNeUgfY9K6euYqj8D-5aoBhiqx7JRoBBiY7UzESEH6yOq4imDwY7BCZLrT-hUb1vFQu6fzQJKMFI1w3wBQETq73UpjOozG-1sTfGILJaf-vf2jhbKWA/s320/IMG_4847.JPG" width="256" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is an important part of recovery.<br />One major benefit: It helps clear gunk from her lungs.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2p-rXWnuQoTjc6DBbyKzZ8t8um3xdMJ0BLkQwFG9Rt86tBvA5K5kq5uBjn8qdLGUZMPuguB9OPRbMXb0oFvjvSQhm09x8L1z3kVvWxeq4-pkkva9-uhhsAyXy_oxt9zuQ-8ROGo_54N0/s1600/IMG_4861.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
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The last visitor during our stay in PICU was Miss. Jacksonville, Amanda Hatcher. We met her a few weekends prior to her surgery at the <a href="http://www.timtebowfoundation.org/index.php/golf/">Tim Tebow Foundation Golf Classic</a> at TPC Sawgrass (<i><span style="color: purple;">we had a blast!!!</span></i>). Unfortunately, Evie was asleep and did not wake until a couple of hours later. She loved tugging on the balloon strings and making them bounce around. While at Wolfson's, Amanda went to visit other patients living the hospital life like us. Thank you Miss. Jacksonville!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2p-rXWnuQoTjc6DBbyKzZ8t8um3xdMJ0BLkQwFG9Rt86tBvA5K5kq5uBjn8qdLGUZMPuguB9OPRbMXb0oFvjvSQhm09x8L1z3kVvWxeq4-pkkva9-uhhsAyXy_oxt9zuQ-8ROGo_54N0/s1600/IMG_4861.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2p-rXWnuQoTjc6DBbyKzZ8t8um3xdMJ0BLkQwFG9Rt86tBvA5K5kq5uBjn8qdLGUZMPuguB9OPRbMXb0oFvjvSQhm09x8L1z3kVvWxeq4-pkkva9-uhhsAyXy_oxt9zuQ-8ROGo_54N0/s320/IMG_4861.JPG" width="320" /></a></div>
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Later that evening we were moved to our new suite. I wasted no time getting settled (we were going to be there awhile) and decorating her room for Easter. She was gifted a Easter baskets from some of the staff and one of our fellow Rett mom's that came to visit. It has taken some getting used to that the children's hospitals bring her goodies when we stay for any length of time.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF40VIw0TnadadUT0yrg0tMZAvKZSElhZMcN61d3GHhxQPqyOZ5QWMhoqm9uHS2_lKo9_7S5p3b9toGO3J368OmAdA9fOtwMccs0dZou3y0gNwJSUJcazDtMMAZsbXv3-g1Mnfa3wKdC4/s1600/IMG_4874.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF40VIw0TnadadUT0yrg0tMZAvKZSElhZMcN61d3GHhxQPqyOZ5QWMhoqm9uHS2_lKo9_7S5p3b9toGO3J368OmAdA9fOtwMccs0dZou3y0gNwJSUJcazDtMMAZsbXv3-g1Mnfa3wKdC4/s320/IMG_4874.JPG" width="320" /></a></div>
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We continued getting her in her wheelchair to sit up. Slowly introduced nutrition back into her system (<i><span style="color: purple;">a long grueling process</span></i>). Watched a lot of Disney Jr. and discovered she really likes the movie <a href="http://www.imdb.com/title/tt4191054/">Strange Magic</a> (<i><span style="color: purple;">I was surprised</span></i>).<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBupgN-oH5gzRrZMlfPAHXiZKjSZx6zl3OxeW-TO-3BFrIppBTq8azECBAA3EkdOFWqnCCYAtWumTNL7oEnp-3mUnrmyAnvpMzXDYFCay7SDBaYwsWd9xXJNwS5AvzTELShbOVfss0CgU/s1600/IMG_4886.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBupgN-oH5gzRrZMlfPAHXiZKjSZx6zl3OxeW-TO-3BFrIppBTq8azECBAA3EkdOFWqnCCYAtWumTNL7oEnp-3mUnrmyAnvpMzXDYFCay7SDBaYwsWd9xXJNwS5AvzTELShbOVfss0CgU/s320/IMG_4886.JPG" width="320" /></a></div>
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More visitors came, with more goodies and lots of love for our girl. My Rett family was in full swing along with so many others. We are so thankful for their friendship, support, and visits. It really does help make the days at the hospital pass by a bit quicker.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuOicT4ndxzKOd63KOYF_dAuqoWr08fQEaCBS2TeQT-g7ZWieP_VGpuxuwjhMZeQd6jW3P4sxNuNeozXOyr4Ojq1IS23mya0hlCzXBejG48FFbFW-E4UOcoYX1PWliE4KMlke7khfaY64/s1600/IMG_4928.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuOicT4ndxzKOd63KOYF_dAuqoWr08fQEaCBS2TeQT-g7ZWieP_VGpuxuwjhMZeQd6jW3P4sxNuNeozXOyr4Ojq1IS23mya0hlCzXBejG48FFbFW-E4UOcoYX1PWliE4KMlke7khfaY64/s320/IMG_4928.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.artwithaheart.info/">Art with a Heart</a><br />They came and painted pictures for Evie.<br />She was enthralled with this particular volunteer.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-2NXn2Tpftdz1naPt2aKcxZUt9ELaMCbiYYtTfTScBU32isZ8dR13xFyNa6Nclpoep2HzCyFmyxqyNYcgHqyjG6BoitoL2lfKkcAWOIdk89DXMEA2WwydVtfCIe2m9crkpiP3l1T4AxQ/s1600/IMG_4904.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-2NXn2Tpftdz1naPt2aKcxZUt9ELaMCbiYYtTfTScBU32isZ8dR13xFyNa6Nclpoep2HzCyFmyxqyNYcgHqyjG6BoitoL2lfKkcAWOIdk89DXMEA2WwydVtfCIe2m9crkpiP3l1T4AxQ/s320/IMG_4904.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Evie and her G-Boss on Easter.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWU9NpZDtuFE0GmE0Cm7KTvdE006m8bwTWuI3d78O2a6Cg1qESGtsC3Q6DS-HTTfY8Ll2MQ2feVCsHy4zm0jjh-nA-_wLTBflCWSVzIcPgNGPZZA-GVVeA90XYSBxcu1IfEdfS9WI6m5Q/s1600/IMG_4915.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWU9NpZDtuFE0GmE0Cm7KTvdE006m8bwTWuI3d78O2a6Cg1qESGtsC3Q6DS-HTTfY8Ll2MQ2feVCsHy4zm0jjh-nA-_wLTBflCWSVzIcPgNGPZZA-GVVeA90XYSBxcu1IfEdfS9WI6m5Q/s320/IMG_4915.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brad "BigPoppaChive" Zahn<br /><a href="https://chivecharities.org/">ChiveON!</a></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYG9dOwkUqvkIicIK0LnH1rT4aw2x2DN9OhpkE_2e-s1OoJSPk62INvoOukqkebqlN6s6toxHYDocOZIsfDVdLEtgmNJvLjh6WCn-VN6K3p36LCgD4Tfew2Z6sZtSODfmno4JBX8fHm74/s1600/IMG_4924.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYG9dOwkUqvkIicIK0LnH1rT4aw2x2DN9OhpkE_2e-s1OoJSPk62INvoOukqkebqlN6s6toxHYDocOZIsfDVdLEtgmNJvLjh6WCn-VN6K3p36LCgD4Tfew2Z6sZtSODfmno4JBX8fHm74/s320/IMG_4924.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Evie and her BFF.<br />These two crack me up!</td></tr>
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The wound care team came in to remove the <a href="http://www.woundcarecenters.org/article/wound-therapies/vacuumassisted-closure">wound vac</a> and change her dressing. It was time for me to see her incision. Deep breath!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFsDxzBps-X5IPOK8XmUupd49V996WLPluMIaFMZ-Fd1x6zyrvqSrBSvxQBiUxqGV81S2ibgBdi36H0D9j-gyDJsOQC1a89BgErA3VXjvQ2INROwozsHvh1MWTX6PR14uSCS2YLxLPs18/s1600/IMG_4933.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFsDxzBps-X5IPOK8XmUupd49V996WLPluMIaFMZ-Fd1x6zyrvqSrBSvxQBiUxqGV81S2ibgBdi36H0D9j-gyDJsOQC1a89BgErA3VXjvQ2INROwozsHvh1MWTX6PR14uSCS2YLxLPs18/s400/IMG_4933.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not exactly what I expected, but WOW!<br />Now I was responsible for keeping it covered and clean.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM4Haxv7ZKb6KKdCq_9hlla6mwWQ-tmTJrMbdT3Koped0hkDc6mqrcPn-wys_SBu8I-4JH0JjRDzlfykIc8bwya-ZhIe7fTIS8UbxecDAEO8vyFCPgQxCEtGUnsK7_FNoUdtUWbzjAbZs/s1600/IMG_4938.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM4Haxv7ZKb6KKdCq_9hlla6mwWQ-tmTJrMbdT3Koped0hkDc6mqrcPn-wys_SBu8I-4JH0JjRDzlfykIc8bwya-ZhIe7fTIS8UbxecDAEO8vyFCPgQxCEtGUnsK7_FNoUdtUWbzjAbZs/s400/IMG_4938.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div>
These wonderful ladies did a great job removing the bandages.</div>
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They took their time and used this awesome spray to make it easier.</div>
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I watched this process very closely and assisted (<i><span style="color: purple;">just a bit</span></i>) so I knew what I needed to do if/when I needed to change the dressing at home. Which of course I ended having to do a couple of times because of that darn liquid diet she was on. <b><span style="color: orange;">C'est la vie!</span></b><br />
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<span style="color: black;">Before we knew it, we were all set to go home. The doctors signed off on our walking papers, we got our prescriptions filled from the hospital pharmacy. <b><span style="color: orange;">*</span></b><span style="color: orange;"><b>Tip:</b></span> Always get them filled before you leave the hospital. Just because they have the medication prescribed, doesn't mean an outside pharmacy will. <br />
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We were finally on our way home!!! A little nervous, but I was confident we'd be ok and we have been (<i><span style="color: purple;">a little sleep deprived, but its getting better every day</span></i>).</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHIhgmzaVeneiwGk-xsTMjQNlYymBqUkLNKhMbKrgYLBDoEoaiFM1ekdF9HBXVjkDRlSwZleD5meD71vmb5Ku2Z_knTtWPL3G5Qy_aRIGrW-id3xmHbEtGbvEaNPP2RtGvezXNX9F9kok/s1600/IMG_4955.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHIhgmzaVeneiwGk-xsTMjQNlYymBqUkLNKhMbKrgYLBDoEoaiFM1ekdF9HBXVjkDRlSwZleD5meD71vmb5Ku2Z_knTtWPL3G5Qy_aRIGrW-id3xmHbEtGbvEaNPP2RtGvezXNX9F9kok/s200/IMG_4955.JPG" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJUmolyWZpOIUV5-V6KcCK4WmSmjBU7_AgYGITBJU-_KgDbCyNoOy1Sm-wsDvj6GLN225-Jr_-N_fICg4EHhJmrn_e3zsjJFiErUV8FOWiDZ-z9aOrXAKnI9Z3KaIv9NgQvoeiuGS-1kw/s1600/IMG_4957.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJUmolyWZpOIUV5-V6KcCK4WmSmjBU7_AgYGITBJU-_KgDbCyNoOy1Sm-wsDvj6GLN225-Jr_-N_fICg4EHhJmrn_e3zsjJFiErUV8FOWiDZ-z9aOrXAKnI9Z3KaIv9NgQvoeiuGS-1kw/s200/IMG_4957.JPG" style="cursor: move;" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div>
Our last nurse for this stay at Wolfson's.</div>
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I promise she was in the van.</div>
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<br />
Goodbye Wolfson's Children's Hospital! Until we meet again (<i><span style="color: purple;">cause let's be honest...we'll be back</span></i>). Your nurses, assistants, therapists, managers, and support staff rocked (<i><span style="color: purple;">we really need to have a talk about your food service though...except the Jazzman Café...those ladies are AWESOME!</span></i>).<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><br />
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<br />RettMomFLhttp://www.blogger.com/profile/18322097498021325477noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-82964502235611906982016-03-02T07:46:00.000-08:002016-03-02T07:55:08.353-08:00Dangerous Curves AheadBefore Evie turned one, I nearly drove myself insane because I believed she was developing a curve in her back. It was small. Tiny really. Nothing that someone who didn't regularly rub her back would even notice. But I did. I held her and rub her back every day. I just knew something wasn't right.<br />
<br />
It was confirmed before her first birthday. She had an<a href="http://hypotonicworld.blogspot.com/2012/02/8-degrees.html"> eight degree curve</a>. Now I know that isn't severe and I didn't really flip out because from everything I read that was manageable. I knew progression of the curve was what we wanted to slow down. I asked about options and at eight degrees there really aren't many outside of therapy. We took a wait and see approach.<br />
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Fast forward through a few visits with her orthopedist and that tiny eight degrees did indeed progress (<i><span style="color: purple;">which I expected</span></i>). Her scoliosis curve shifted from 8 (<i><span style="color: purple;">2011</span></i>) to 18-20 (<i><span style="color: purple;">2012</span></i>), then from <a href="http://hypotonicworld.blogspot.com/2014/01/trouble-with-curve-tale-of-scoliosis.html">18-20 up to 40-45</a> (<i><span style="color: purple;">2013</span></i>), and finally from 43 (<i><span style="color: purple;">2014</span></i>) to<b><span style="color: #f6b26b;"> </span><span style="color: #f6b26b;">59</span></b> (<i><span style="color: purple;">2015</span></i>). Now there is a margin of error to consider of 2-3 degrees up or down on that scale, but those numbers and her rather rapid progression meant that her scoliosis was not going to be manageable by bracing and therapy alone.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg10loVJU1u-SMAWMuYf6LWi2gVx5RJbF74UfQn8__94rzXd1qHpLUzCMu0xNPYWVBxRm2ecIWW_GLg2Ret9ERTEkyy3Ip3oGO_oYHYR11pN4-CnTPMPd1UewzRRb4WTnc_Wtj3w5_UPtQ/s1600/Evie%2527s+Spine.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg10loVJU1u-SMAWMuYf6LWi2gVx5RJbF74UfQn8__94rzXd1qHpLUzCMu0xNPYWVBxRm2ecIWW_GLg2Ret9ERTEkyy3Ip3oGO_oYHYR11pN4-CnTPMPd1UewzRRb4WTnc_Wtj3w5_UPtQ/s400/Evie%2527s+Spine.jpg" width="308" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Life at 59 Degrees<br />
November 2015</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDv0oobg_5lxZ6VYZaYn1Uc-0JZYCPaUFf6Nb7vGkHG9y4gOg9UazbetSuZDwNow2UrR1nXeVHvfwqBr46aMciIOsjG-iOI3McbvMP7Fa-KUXqJnPoh6jgLRR6aLcZ19hbP6Ifi11LIyY/s1600/10647139_699433520134853_1123565265044935929_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a></div>
Every time she had a growth spurt so did her curve. Now we've gotten to the point that her hip is curling up and she can not correct herself at all. When she attempts to stand, without her brace, it doesn't take long before she is tipping to her left and falling (<i><span style="color: purple;">full disclosure: she can't stand independently at all</span></i>).<br />
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In early 2015, I asked her orthopedist at what degree level do we start considering surgical intervention (<b><span style="color: purple;">TIP:</span></b><i><span style="color: purple;"> never ask a question that you don't want to know the answer to</span></i>) and in a very direct manner (<i><span style="color: purple;">which I appreciate</span></i>) he stated fifty degrees. I breathed a slight sigh of relief because we were still sitting squarely at 43 degrees. We scheduled our next appointment for November and went home with our brace and some big things to consider (<i><span style="color: purple;">and research...my favorite thing</span></i>). <br />
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November was a tough month for our family. On the day of Evie's orthopedic appointment, <a href="http://hypotonicworld.blogspot.com/2016/02/open-your-eyes.html">I ended up in the ER</a> with three IV's stuck in my arms and nurses swarming over me. It was the first time I wasn't able to attend her appointment and I knew it was going to be the BIG one. The same gut feeling I had when she was about 9 months old was telling me that her scoliosis was worse. Surgery was going to be on the table. My baby would have one more, very long, scar to add to her growing collection (<a href="http://hypotonicworld.blogspot.com/2012/11/all-knotted-up-muscle-biopsy.html">one muscle biopsy</a><i><span style="color: purple;">, two hip scars, and a g-tube</span></i>). <br />
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The news came. I screamed (<i><span style="color: purple;">probably scared the ER personnel</span></i>). The doctor tending me rushed to my side begging me to calm down (<i><span style="color: purple;">my emotions were affecting my blood pressure which was dangerously low</span></i>). I pushed the phone away and refused to talk to my husband anymore (<span style="color: purple;"><i>fyi: he had no idea how serious my situation was, my mom was waiting until after Evie's appointment to tell him </i></span><i><span style="color: purple;">EVERYTHING</span></i>). <br />
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Surgery was officially on the table and, much to my surprise, my husband told her doctor to put her on the waitlist for a surgical date. I would have done the same. (<b><span style="color: purple;">TIP:</span></b><span style="color: purple;"><i> Over the years I have learned it is better to get the appointment or be added to the waitlist and then think over all the options and necessity. You can always cancel the appointment or remove your name from the waitlist later. No harm. No foul</i></span><i>.</i>)<br />
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<span style="color: #f6b26b;"><b>The short version of this story:</b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUhTIzxTz9_MRkXcGbKjTzKfq_gBiR1s2mJRXamxcIVVWEHhoUJXWq39LyVAqXCoHexvwJkJN03qH9KoTSii6GZQ2BtxJ7xYBkG5ngfcWNMq95bGMyzkwIjOpovz-uxVsxvDA7kztSP04/s1600/12715898_10207965246544941_5932783070216859157_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUhTIzxTz9_MRkXcGbKjTzKfq_gBiR1s2mJRXamxcIVVWEHhoUJXWq39LyVAqXCoHexvwJkJN03qH9KoTSii6GZQ2BtxJ7xYBkG5ngfcWNMq95bGMyzkwIjOpovz-uxVsxvDA7kztSP04/s320/12715898_10207965246544941_5932783070216859157_o.jpg" width="320" /></a></div>
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Evie is scheduled for spinal surgery at the end of March. She and I will be taking up residence at our local children's hospital the day prior to surgery and will be there for three-four nights. The procedure she will have is called MAGEC and they are growth rods (<span style="color: purple;"><i>more about <a href="http://ellipse-tech.com/magec-patients/">MAGEC</a> coming soon</i></span>).<br />
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This WAS NOT an easy decision. I spoke with many people whom I respect and researched scoliosis a second/third/fourth time (<i><span style="color: purple;">the information was still the same as it was in 2011</span></i>). We know the risks. We trust our team. <br />
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I feel at peace with this decision. I have been preparing myself for this since the curve increase of 2013. I know this is out of my hands. I know who holds the future and we will persevere. <br />
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*I promise to keep the blog more current as we go through this process.RettMomFLhttp://www.blogger.com/profile/18322097498021325477noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-63081035266874541132016-02-11T13:03:00.001-08:002016-02-11T13:03:56.422-08:00Open Your EyesJust open your eyes. Open your eyes and look at your mother. She's right beside you. Reassure her. Open your eyes so she knows you are still here.<br />
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*my eyes open*<br />
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Good. Now you can rest again, but only for a few seconds. Then you have to open your eyes again. Don't stop looking at her. <br />
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God I'm not ready. I have to be here. Please. I know my time hasn't come yet. Please. I have to stay for Evie. Don't make my parents bury me.<br />
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*my eyes close*<br />
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Open your eyes again.<br />
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I can't. I'm so tired. It takes too much effort.<br />
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Your mother is sitting here with you. She needs to see your eyes open. Open your eyes.<br />
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Ok.<br />
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*my eyes open*<br />
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I know she is afraid. She's calm, but I know inside she is afraid. I can see it. I'm afraid too. I start to cry. I don't want to hurt them. I can't leave. Why is this happening? Haven't I gone through enough? Haven't we gone through enough? I need to rest. There are so many people in this little room. I want to float away.<br />
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*my eyes close*<br />
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Open your eyes. <br />
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I can't. I just want to sleep.<br />
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Open your eyes. I am not asking, I am commanding you. Open your eyes.<br />
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*my eyes open*<br />
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The nurses are fussing over me. They can't get a vein for a third IV. The doctor wants to do a surgical procedure. They want to put a line into my neck. Oh dear lord, what is wrong with me?!?! I'm not supposed to be here. I'm supposed to be the healthy one. I'm the baby. The youngest. Hasn't my family lost enough? This is not how I want to be relieved of my burdens. Not yet. Please. Not yet.<br />
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*my eyes close*<br />
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Open your eyes. Look at your mother. She needs you to look at her. <br />
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I can't. Please. You don't understand. I'm so tired. I hurt. They keep poking me. It hurts so much. I feel weightless and free when my eyes are closed. Just let me be.<br />
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Open your eyes.<br />
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*my eyes open*<br />
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They are all still here. The nurses. The doctor. My mom. Either fussing over me or waiting to know what is wrong. I'm freezing cold, but burning up. I want a blanket, but they keep trying to take it away. I scribble my signature on some legal form giving consent to cut into my neck. Oh God, what is happening? I begin to cry again. The doctor rushed over telling me I need to calm down. How am I supposed to calm down when I don't know what is happening.<br />
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*my eyes close*<br />
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They tell me to turn my head to the left. I feel a plastic film cover my face and upper chest. Oh God, they're doing it. They're going to cut me. The needle presses into my tender skin to numb the area. Why does it hurt so much? I feel my tears sliding down my cheeks and a bit of panic settling in. Deep breath. Deep breath. Calm down. It's ok. You're in the ER and they won't let anything happen to you.<br />
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Open your eyes.<br />
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*my eyes open*<br />
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I search for my mothers face and she's right there beside me. She's so calm. That's what you want in an emergency situation. I know she'll have her moment later when the time is appropriate. When she doesn't have to be strong for me.<br />
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*my eyes close*<br />
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The doctor is leaning over me. I keep my eyes closed. I feel a bit of pressure on my neck. Then I feel warm liquid running down my neck. I know its my blood. The panic comes again. Deep breath. Calm down. <br />
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Open your eyes.<br />
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*my eyes open*<br />
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She's still there. I'm still here. We're going to get through this.<br />
<br />
*my eyes close*<br />
<br />RettMomFLhttp://www.blogger.com/profile/18322097498021325477noreply@blogger.com1tag:blogger.com,1999:blog-175625908824414790.post-65452599331473293802015-11-27T05:21:00.000-08:002015-11-27T05:21:23.934-08:00Holidays = Distrupted RoutinesThe holidays are here and we all know what that means.<br />
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<span style="background-color: white;">Disrupted routines! AHHHHHH!!</span><br />
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Schools are on break, therapists go on vacation, and your daily routines are in jeopardy of being overthrown by the busyness of social gatherings, cookie baking, decorating, and shopping (<i><span style="color: purple;">of course</span></i>). Typically, I work on most of those things while my daughter at school, but during the holidays and school breaks, that is no longer an option. Here are five things to help keep your routine intact (<i><span style="color: purple;">almost</span></i>) and help you survive the holidays.<br />
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<b>1. Make a list of the must do's in your routine.</b><br />
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I know what I can and can not get away with doing and not doing when it comes to our daily routine. I DO need give her medications to her on time. I DO need to feed her, give her fluids, and make her smile & laugh. I DO NOT necessarily have to get up at 4am to put her on her chest physical therapy (<i><span style="color: purple;">CPT</span></i>) machine every morning. I DO NOT have to give her a bath on Tuesday if Wednesday will work better for us. I DO/DO NOT need to keep every one of her appointments (<i><span style="color: purple;">it's case by case</span></i>). Knowing what I can be flexible with helps me plan out our day.<br />
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<b>2. Pinpoint where you have flexibility in your routine/day.</b><br />
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Structure is great. Some of us really thrive on it. Unfortunately, it drive me bonkers. I like being able to have flexibilty in my routines. By noting when I have the opportunities to be flexible, it makes it easier for me slip out for lunch with a friend or run an errand that just can't wait any longer. Yes, my daughter needs to have time in her stander/walker and she needs to continue practicing on her Tobii, but those are activities that I am able to shift as I need to (<i><span style="color: purple;">unlike her medicine</span></i>).<br />
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<b>3. Keep your expectations reasonable.</b><br />
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If you aren't used to having your daughter home all day, every day, then cut yourself a little slack. More often than not, you are one person trying to do the job of three or four. There is no way I can expect myself to accomplish all they do with my daughter at school in the comfort and craziness that is our home. She may use her stander one day and her walker the next and I don't need to beat myself up over it when I can't do it all. We can't always be SuperMom. Which brings me to my next point.<br />
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<b>4. Take advantage of respite care.</b><br />
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Do you have respite care hours, a nurse, a trusted family member or friend willing to help? Then use them. I know that is easier said than done, but trust me, you will need some time to just take care of business (<i><span style="color: purple;">calling insurance/doctors or going to the store</span></i>) or maybe just sipping a cup of coffee in the peace and quiet of your favorite shop. I can tell when I need a break and a little time to myself because I start feeling tired and grumpy. If I'm not getting that time to just unwind, it makes our routine that much harder to follow. This works best when you are honest about what you need and what you can and can not do.<br />
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<b>5. Be honest with yourself, friends, and family about what you are able to commit to.</b><br />
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We've all done it before; over-committed ourselves by not being honest about our limitations. We all have limitations, and I'm laughing at myself right now because anyone can tell you I am quick to say yes when asked to help. Then, I start to realize I have bitten off more than I can chew, and back peddling just isn't my style. Now, I am making more of an effort to be honest with myself and others about what I am able to commit to and complete. It is okay to say <b><span style="color: #e69138;">"no"</span></b> or <b><span style="color: #e69138;">"not right now"</span></b> ; especially if the request would be difficult to work into your routine.<br />
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Bonus Tip:<br />
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<b>6. Expect the unexpected.</b><br />
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The unexpected is going to happen and you'll have to make quick adjustments to your day. Most of us have already experienced those hair raising moments that completely destroy our plans. Most recently, we found ourselves in the emergency room of the Children's Hospital of Atlanta, in Georgia (<i><span style="color: purple;">we live in Florida</span></i>) because I accidentally pulled out my daughters g-tube button. I kept saying, "We were going to go to the aquarium today." and then a little cynical laugh would escape my lips. The unexpected happens: it doesn't care about your routine/schedule, and you just have to roll with it. Rest assured because you will always find a fellow Rett parent to help you through it.<br />
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<br />RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-13381256944491672162015-04-07T15:25:00.003-07:002015-04-07T15:25:43.768-07:00Accepting the Answer GivenDo you pray?<div>
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I do.</div>
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Sorta.</div>
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Not in the Sunday School way. On my knees. Hands clasped. Head bowed. You know like Jesus when he was in the garden asking God if there was another way to our redemption that didn't involve His death. For me, it typically happens during the peaceful silence of my drive home after taking Evie to school (<i><span style="color: purple;">I drive 25 minutes one way</span></i>).</div>
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I also find my prayers to be an in the moment thought. A conversation. A quick word spoken in my mind. Sometimes my words are filled joy and praise. Sometimes they are spoken in times of great fear, angst, and sorrow. On a few occasions I spoke out in anger and even yelled. Yes, I have yelled at God. I'm pretty sure He expected it. He listened anyway.</div>
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A few weeks ago, when I managed to pull myself together, I attended church. I just sat there with my hands in my lap. Trapped in my own thoughts. Not focused on the sermon. I can't even tell you where my mind drifted off to during that half hour or the subject of the sermon. I was just not there.</div>
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The message came to a close. Our pastor opened the invitational (<i><span style="color: purple;">a time for those so moved to come forward and accept Christ, seek support/prayer from the congregation, or join the church</span></i>) and a man came forward. He was an older gentleman. He was seeking prayer. He was diagnosed with cancer…again. </div>
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Members of the church rose from their seats and moved towards the alter. Each one laying their hand on the person before them. This man was cloaked in praying hands and the Holy Spirit was moving. Our pastor spoke words of healing. Claiming it. Owning it. Asking for God's will to be done.</div>
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Then the Holy Spirit touched me (<i><span style="color: purple;">more like slapped me upside the back of my head</span></i>). Tears started running down my cheeks.</div>
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We pray for healing. We pray for illness to leave our bodies and make us whole. We fervently pray for a cure to our ailments and our pain.</div>
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What if the answer to our prayer can only be given through death?</div>
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I don't know why that never struck me before, but that morning it hit me hard. I pray for my daughter and all her Rett sisters. I pray for a cure. I pray for healing. I pray for a restoration of their bodies. It is a broken record that plays in my mind all day long. But...</div>
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What if her restoration will only come when she passes?</div>
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Can I accept her death as the answer to my most earnest prayers?</div>
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For a few years now I have known that we may lose Evie at a young age. My newsfeed on Facebook reminds me of this possibility on a regular basis. In fact, our Rett community lost two more girls this past week. We read those words and our hearts ache. We pray even harder. As if that were possible.</div>
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The only option I have is to keep moving forward. Keep hoping. Keeping working towards finding a cure. Keep praying. </div>
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God will give me an answer to my prayers in His time. It may not be the one I want to hear, but it will come. He will also give me the strength and support system to survive the loss if/when it happens. I don't know how, but I'm just going to claim it now (<i><span style="color: purple;">and pray some more</span></i>).</div>
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<i><span style="color: #f6b26b;"><span style="font-family: Times, Times New Roman, serif; font-weight: bold;"><span class="text 1Thess-5-16" id="en-NIV-29638" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; line-height: 24px;"><span class="versenum" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;">16 </span>Rejoice always,<span class="crossreference" data-cr="#cen-NIV-29638AE" data-link="(<a href="#cen-NIV-29638AE" title="See cross-reference AE">AE</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span></span><span style="background-color: white; line-height: 24px;"> </span><span class="text 1Thess-5-17" id="en-NIV-29639" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; line-height: 24px;"><span class="versenum" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;">17 </span>pray continually,<span class="crossreference" data-cr="#cen-NIV-29639AF" data-link="(<a href="#cen-NIV-29639AF" title="See cross-reference AF">AF</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span></span><span style="background-color: white; line-height: 24px;"> </span></span><span style="font-family: Times, Times New Roman, serif; font-weight: bold;"><span class="text 1Thess-5-18" id="en-NIV-29640" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; line-height: 24px;"><span class="versenum" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;">18 </span>give thanks in all circumstances;</span></span></span></i></div>
<div style="text-align: center;">
<i><span style="color: #f6b26b;"><span style="font-family: Times, Times New Roman, serif; font-weight: bold;"><span class="text 1Thess-5-18" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; line-height: 24px;">for this is God’s will for you in Christ Jesus</span></span><span class="text 1Thess-5-18" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; font-weight: bold; line-height: 24px;">. </span><span style="background-color: white; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"><b>~1 Thessalonians 5:16-17 (NIV)</b></span></span></i></div>
RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-73982287933259921702015-01-06T08:33:00.001-08:002015-01-06T08:33:43.898-08:00When There Are No WordsIt seems weird to write a post about there being no words, but more often than not I find that there just aren't adequate words to express my sorrows and empathy to members of our Rett community. Nothing I can think of feels right.<br />
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One of the things I have grown accustomed to since joining the ranks of thousands of special needs families is loss. The loss of dreams and hopes for our children's future (<i><span style="color: purple;">and ours</span></i>). The loss of friends and family. The loss of our own identities. And worst of all…the <b><span style="color: #e69138;">loss of our children</span></b>.<br />
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I say ours because any loss within our community touches our hearts. Shakes us up. Reminds us how quickly the tides can change against our girls. We weep. We mourn. We console the best we can from long distances. We hold onto our children just a little tighter the day we read those six words, <b><span style="color: #e69138;">"Another Rett Angel gained her wings."</span></b> It is a harsh reminder of how cruel Rett can be and why we desperately need a cure.<br />
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I am also at a loss for words. I don't know what to say. I feel compelled to acknowledge the loss, but what words do I use?<br />
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<b><span style="color: #e69138;">"I'm sorry."</span></b><br />
<b><span style="color: #e69138;"><br /></span></b>
<b><span style="color: #e69138;">"You're in my prayers."</span></b><br />
<b><span style="color: #e69138;"><br /></span></b>
<b><span style="color: #e69138;">"Thinking of you and your family."</span></b><br />
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<b><span style="color: #e69138;">"<hugs>"</span></b> (<i><span style="color: purple;">virtual hugs</span></i>)<br />
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These are the only words that remotely feel acceptable. I can't fathom saying anything like, <b><span style="color: #e69138;">"She's in a better place now."</span></b> That would just piss me off if someone said that to me. I sit at my computer, staring at the screen, trying to come up with something to say and everything just feels empty. What I want to do is embrace them. Support them. Just be there in the silence. But we are miles apart and my only option is to write this post or comment on Facebook.<br />
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Sometimes there are just no words.RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-34558848261505567252014-09-03T15:13:00.001-07:002014-09-03T15:13:05.040-07:00Upper EnDO or EnDON'TWe're at a crossroad again. I'm standing here (<i><span style="color: purple;">actually sitting</span></i>) trying to make an educated decision about how to proceed. We've hit a few rough patches this summer including:<br />
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<ul>
<li>a battle with pneumonia (<i><span style="color: purple;">a four letter word in our home</span></i>)</li>
<li>a hospital stay (<i><span style="color: purple;">likely more pneumonia</span></i>)</li>
<li>a sleep study (<i><span style="color: purple;">moderate obstructive apnea</span></i>)</li>
<li>some insane sleep disruptions (<i><span style="color: purple;">full blown night terrors with screaming and tears</span></i>)</li>
<li>the addition of a suction machine (<i><span style="color: purple;">like the one used by your dentist</span></i>)</li>
<li>another mystery illness/infection that has resulted in another round of antibiotics (<i><span style="color: purple;">don't judge, you're not in our shoes</span></i>)</li>
</ul>
It's time to make some more decisions and I don't feel qualified to make them, but we're the only ones that can say yes to the proposed course of action that includes:<br />
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<ul>
<li>an <a href="http://www.chp.edu/CHP/EGD+Endoscopy">Upper Endoscopy</a> (<i><span style="color: purple;">requires anesthesia which geeks me out a bit</span></i>)</li>
<li>a <a href="http://www.chp.edu/CHP/24+Hour+pH+Study">PH Probe/Impedance</a> (<i><span style="color: purple;">requires a hospital stay with a tube down her throat</span></i>)</li>
<li>another (<i><span style="color: purple;">third</span></i>) <a href="http://www.chp.edu/CHP/Modified+Barium+Swallow">Modified Barium Swallow Study</a> (<i><span style="color: purple;">it counts as 1 of her 35 therapy visits</span></i>)</li>
<li>a conversation about her tonsils and adenoids (<i><span style="color: purple;">remove or not remove</span></i>)</li>
</ul>
I know it doesn't sound like a lot or even very drastic, but I see what they truly are…<b><span style="color: #e69138;">milestones</span></b>. The end of the small, easy tests with simple answers. The tide is changing. The stakes are getting higher. I had finally found my sweet spot with our day to day routines. Now I am just standing here with no idea which way to turn or what it may mean for Evie and for us if we do (<i><span style="color: purple;">or don't</span></i>) pursue some of these options.<br />
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Am I more afraid of the obstructive apnea or of a surgical procedure to remove her tonsils and adenoids? (<i><span style="color: purple;">which in all likelihood the doctor will not support, but I have to ask</span></i>)<br />
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Am I comfortable authorizing <b><span style="color: #e69138;">MORE</span></b> testing, uncomfortable testing that requires sedation and a hospital stay?<br />
<br />
What changes will we have to make to her diet if she is now aspirating food particulates like we suspect?<br />
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It is a ever changing world that we live in. I find it unsettling most days. (<i><span style="color: purple;">or at least when I allow myself to think about it</span></i>)<br />
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If you ever think you're tired of your monotonous, boring, somewhat predictable life, please take a moment to be thankful for it because the alternative can be downright nasty.RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com1tag:blogger.com,1999:blog-175625908824414790.post-42270133326607024332014-09-03T11:50:00.002-07:002014-09-03T14:45:01.387-07:00Where Shopping is a PleasureDo you have a Publix where you live? Have you ever been to a Publix? Do you know what you are missing? Munching on their crispy chicken tenders, sipping their sweet tea, and satisfying your sweet tooth with one of their sugar cookie can become addicting. To put it simply...<br />
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<b><span style="color: #6aa84f; font-size: large;">We love our Publix!!!</span></b></div>
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Not just because of their food, their coupon policies, or their cleanliness. What makes Publix so incredibly <b><span style="color: orange;">AWESOME</span></b> is their customer service. Their willingness to help you find something, even when you don't ask. Seriously, they see you cruising slowly down an aisle and will just offer assistance. Is the product you're looking for not on the shelf? They will go check to see if they have more in the back (<i><span style="color: purple;">instead of saying, "I don't know" while shrugging…cough, cough…Walmart...cough, cough</span></i>). </div>
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What is best is the interaction between the employees and Evie. They always talk to her and ask how she is doing (<i><span style="color: purple;">on the rare occasion she stays home</span></i>). Hands down her favorite department is the bakery (<i><span style="color: purple;">and the apron strings kiosk</span></i>). She loves getting her cookie!</div>
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RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-76377789245166776472014-08-23T08:38:00.005-07:002014-08-23T10:18:01.718-07:00Save Access to AAC Devices!!!If you are reading this, you probably have access to the internet from either a home computer/laptop, an iPad/tablet, or a smartphone. You probably have WiFi or 4G access that allows you to email your friends, family, and colleagues or post about your day onto Facebook, Twitter, or Instagram. If your internet or wireless service goes on the fritz you can probably pick up your phone and call a technician to complain.<br />
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<b><span style="color: orange; font-size: large;">Congratulations!!!! </span></b></div>
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You can communicate and participate in the world around you.</div>
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<span style="color: purple;"><b>***********************************************************************</b></span></div>
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Now, imagine that you do not have the ability to communicate at all. </div>
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<b><span style="color: orange; font-size: large;">Zip. Zilch. Nada.</span></b></div>
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Many (<i><span style="color: purple;">if not most</span></i>) individuals with disabilities/disorders like Rett Syndrome, ALS, Spinal Muscular Atrophy, spinal cord injuries (<i><span style="color: purple;">this list can go on and on</span></i>) are not able to communicate verbally with the world around them. The very people that are responsible for their medical care, their meals, their clothing choices, their everything... operate on the assumption that they can decipher what someone else wants or needs. Sometimes that may be a slight smile, a tilt of the head, or a <b><span style="color: orange;">"look."</span></b> But we are still just doing the best we can to pinpoint what they need/want.</div>
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My 3 year old daughter is non-verbal and sharp as a tack. We make a lot of guesses about what her needs and wants are on a daily basis. Sometimes we are right and sometimes we are very, Very, <b><span style="color: orange;">VERY </span></b>wrong. We have attempted different forms of communication from low tech (<i><span style="color: purple;">picture cards</span></i>) to high tech (<i><span style="color: purple;">iPad apps</span></i>) and due to her limited hand control (<i><span style="color: purple;">thanks a lot Rett Syndrome</span></i>) those forms have been less than successful.</div>
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Our hope was restored when we learned about a company called <a href="http://www.tobii.com/">Tobii Technology</a>. Tobii is the leader in eye gaze technology which allows people like Evie to communicate using their eyes. There is a lot of technical jargon that I can spout off, but basically the computer has fast cameras which track her eye movement and allow her to select words and activities. She can communicate!!! But the device cost between <b style="color: lime;">$17,000 </b>and<b style="color: lime;"> $20,000</b>!!! <b><span style="color: orange;">OUCH!</span></b> (<i><span style="color: purple;">the ability to communicate is priceless, but that still hurts</span></i>)</div>
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Watch how well she is able to navigate.</div>
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This was the first time she had access to a Tobii for more than 15 minutes!</div>
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Now that very hope is being threatened with pending legislation for Medicare (<i><span style="color: purple;">their regulations quickly become industry standard</span></i>) and we need your help.</div>
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The attack began in April 2014, when Medicare implemented a policy that denies patients the use of medically necessary speech generating devices (<i><span style="color: purple;">SGDs</span></i>) upon admittance into a healthcare facility (<i><span style="color: purple;">hospice or nursing home</span></i>). The one place that a person with complex medical concerns should be able to communicate with their caretakers, doctors, and loved ones.</div>
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On September 1, 2014, the second wave will become effective. Medicare will no longer fund a SGD that has the ability to connect to the internet. Previously, they allowed the user to <b><span style="color: orange;">"unlock"</span></b> the internet feature at their own expense, but now that is not even an option. This means users will not be able to interact with anyone beyond the confines of their own room. </div>
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<b><span style="color: orange;"><br /></span></b></div>
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<b><span style="color: orange;">NO</span></b> email. <b><span style="color: orange;">NO</span></b> texting. <b><span style="color: orange;">NO</span><span style="color: #f6b26b;"> </span></b>Internet. </div>
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<span style="font-size: large;"><b><span style="color: orange;">NOTHING!</span></b> </span></div>
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Lastly, Medicare's wait list for SGD-eligible beneficiaries who need eye gaze technology is <span style="color: orange;"><b>YEARS</b> </span>long. Some individuals never get the chance to communicate with their loved ones or have meaningful input regarding the final stages of their lives because of this backlog. The routine denial of access to eye gaze technology is unacceptable. These people jump through all the hoops, cross all the t's and dot all the i's and still meet the brick wall that is Medicare.</div>
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Please read and sign the petition below and/or contact your local representative. Tell them that this legislation is not acceptable. Tell them that everyone has the right to communicate with the world outside of their home. Tell them that people have the right to talk to their doctors, nurses, caretakers, and loved ones. If you woke up tomorrow and could no longer speak to those around you and purposefully use your hands, wouldn't you want someone to fight for your right to have access to a speech generating device? Please help.</div>
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<b><span style="color: orange;">The deadline to sign is August 27, 2014.</span></b></div>
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<a href="http://www.girlpower2cure.org/save-aac">GP2C: Save Access to AAC</a></div>
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Find your local representative:</div>
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<a href="http://www.house.gov/representatives/find/">http://www.house.gov/representatives/find/</a></div>
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Find your senators:</div>
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<a href="http://www.senate.gov/general/contact_information/senators_cfm.cfm">http://www.senate.gov/general/contact_information/senators_cfm.cfm</a></div>
RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-63967537891537663452014-08-08T06:59:00.001-07:002014-08-08T06:59:06.486-07:00Wheelchair Faux Pas. Oops, My Bad.Suffice to say that Evie sitting in a wheelchair is pretty normal for us. It wasn't always like that. There was a time when the thought alone would reduce me to tears. Now it has become so normal that I sometimes forget that it isn't everyone else's normal.<br />
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One afternoon (<i><span style="color: purple;">around Christmas</span></i>), I allowed a friends daughter to sit in Evie's wheelchair. She is a year older than Evie. She can run, talk, feed herself, hold a cup, sit on a potty, and swim. She is <span style="color: #f6b26b;"><b>"normal."</b></span> She is also curious (<i><span style="color: purple;">most pre-schoolers are</span></i>) and thought sitting in Evie's chair would be great fun. I encouraged it, even said they could take a picture (<i><span style="color: purple;">which her mother reluctantly did, but I doubt she kept the pic</span></i>). It never crossed my mind that seeing her daughter sitting in a wheelchair might not be a memory in the making photo op for her. Oops. My bad. I didn't think of it that way because I didn't see the situation through her eyes.<br />
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Here's what I saw.<br />
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<ul>
<li>I saw an opportunity to show a little girl that wheelchairs aren't bulky pieces of equipment to be afraid of or shy away from. They are just chairs with awesome wheels. Evie's chair is extra awesome because it's raspberry pink! </li>
</ul>
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<li>I saw a smile spread across her face and a twinkle in her eye at the prospect of sitting in that awesome seat that is custom made for my girl. </li>
</ul>
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<li>I saw her laughing, just like Evie does, while sitting in that chair. </li>
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<li>I saw her not thinking about how sad it was for Evie to need a wheelchair (<i><span style="color: purple;">a rare occurrence</span></i>).</li>
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A child's acceptance is a precious thing. My friend's daughter didn't know, or understand, what that wheelchair symbolized to the adults around her. She didn't care. She just accepted it for what it was…a chair. But, that won't last forever. She'll grow up and the understanding will come.<br />
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I am confident that her parents will teach her that people who need medical equipment are people just like her. They aren't someone to be afraid of or ignore. I wish I could say that about all parents.<br />
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I have accepted the wheelchair. I don't like it, but I have accepted it. I have also accepted the looks we receive from those around us. I don't always like those either. If I manage to catch their eyes I give them a big smile (<i><span style="color: purple;">most days</span></i>). If the opportunity presents itself, I will introduce them to Evie. Is it easy? No. Does it help? Maybe. Will they see my daughter and not her chair? Absolutely.<br />
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<br />RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com2tag:blogger.com,1999:blog-175625908824414790.post-20664469736402915072014-07-28T07:18:00.001-07:002014-07-28T07:18:54.854-07:00Rae's Book Review: Just BecauseI happened upon a book a few weeks ago. A small, unassuming book tucked away in the children's section of my local Barnes & Nobles. I can't even tell you what compelled me to pick this book off the shelf, but the moment I read the first page I knew it found a home in my heart and on Evie's bookshelf. I walked to the counter, clutching this book to my chest, overjoyed that I finally found a book that represents Evie perfectly.<div>
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<a href="http://www.rebeccaelliott.com/justbecause.html">Just Because</a> was written and illustrated by <a href="http://www.rebeccaelliott.com/">Rebecca Elliot</a>. It is inspired by her children Clemmie, who has severe special needs, and her little brother Toby. On the first page, Toby introduces us to his big sister, saying she is his best friend. He then informs us that, <b><span style="color: #e69138;">"She can't walk, talk, move around much…,"</span></b> and he doesn't know why. <b><span style="color: #e69138;">"Just because."</span></b> Such a simple, no nonsense statement.</div>
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As Toby continues to talk about his relationship with Clemmie, it becomes even more endearing and I swear Rebecca could have been writing this about my daughter (<i><span style="color: purple;">only without the sibling</span></i>).</div>
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Clemmie is a lot like a princess (<i><span style="color: purple;">so is our Evie</span></i>).</div>
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She makes sweet noises and funny faces</div>
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which make Toby laugh (<i><span style="color: purple;">so does Evie</span></i>). </div>
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She has an great chair (<i><span style="color: purple;">just like Evie</span></i>).</div>
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She has enormous hair and hates her hair being brushed.</div>
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(<i><span style="color: purple;">Evie has complete meltdowns when I brush her hair</span></i>)</div>
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Just like Toby, I know why I love Evie. Just because.</div>
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I discovered that this is the first of two books about Clemmie and Toby! They return in another book titled <a href="http://www.rebeccaelliott.com/sometimes.html">Sometimes</a> and they find themselves in the hospital making the best of a not so great situation and helping each other overcome their fears. You can find both books on <a href="http://www.amazon.com/Sometimes-Rebecca-Elliott/dp/0745962971/ref=sr_1_1?ie=UTF8&qid=1406553953&sr=8-1&keywords=rebecca+elliott">Amazon.com</a>. </div>
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RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com2tag:blogger.com,1999:blog-175625908824414790.post-77038002008916519832014-04-28T07:34:00.002-07:002014-04-28T07:34:29.558-07:00The "R" Word and BeyondThe other night we went out with family and friends to celebrate my mom's birthday. It was a lovely evening, great company, and tasty Italian food. We took Evie out in her wheelchair and everything was going smoothly. Then she had an episode (<em><span style="color: purple;">her small body goes rigid, her hands become manic, and she breathes heavily</span></em>) that lasted about ten to fifteen minutes. I sat there in my chair, cradling her stiffened body, feeling helpless and trying not to cry. It finally passed. I felt relieved and worried at the same time. My husband excused himself from the table to take a call and I handed Evie off to G-Boss. Then the second upsetting event occurred that evening...<br />
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As I sat there collecting myself after her episode, a sound I am all too familiar with made it's way to my ears. The sound of adult men (<em><span style="color: purple;">about mid 30's</span></em>), sitting no less than 6 feet from me, making <strong><span style="color: #f6b26b;">"retarded"</span></strong> noises. I'm sure you can hear it in your head now. These sounds are sometimes heard when someone is telling a story and decides that either someone or something is/was stupid and the best way to convey that is through making fun of those that are not able to articulate well, have no real control over their vocalizations, or can not communicate any other way (<em><span style="color: purple;">like our Evie</span></em>). I felt torn. We were at a nice place, it was loud (<em><span style="color: purple;">so I wasn't fully aware of what they were conversing about, but I was totally sure about what I heard</span></em>), and I was feeling emotional. Probably not the best time to approach strangers about their insensitivity to those around them.<br />
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I related this story to my online support group and it brought up other instances when we just don't know how to approach someone (<em><span style="color: purple;">especially if is a co-worker, friend, or family member</span></em>) when situations like this occur. Then I remembered a similar situation with someone I love very much. They used the <strong><span style="color: red;">"R"</span></strong> word to describe another driver on the road. I was on the phone with them and felt comfortable saying something. It was the first time I actually spoke up about someone using that word and will probably not be the last.<br /><br />However, it isn't limited to the <strong><span style="color: red;">"R"</span></strong> word. People who jokingly say, <strong><span style="color: #f6b26b;">"Aww...isn't that special...special ed!"</span></strong> or who mockingly make unintelligible sounds and spastic gestures to indicate someone or something being <strong><span style="color: #f6b26b;">"stuipid"</span></strong> are equally insensitive. We hear the same excuses all the time when people are trying to justify this type of behavior or use of the <strong><span style="color: red;">"R"</span></strong> word, <span style="color: #f6b26b;"><strong>"We didn't mean it that way," </strong></span><span style="color: black;">(<em><span style="color: purple;">doesn't matter it still hurts</span></em>)</span> or <strong><span style="color: #f6b26b;">"I don't think of him/her like that."</span></strong> (<em><span style="color: purple;">how does that make it okay? what about other people?</span></em>)<br /><br />When it comes to people you know the best suggestion I have is to ask to speak with them privately (<em><span style="color: purple;">no one likes being "called out" in front of others</span></em>). Explain to them that while you know them and (<em><span style="color: purple;">on some level</span></em>) understand they aren't aiming those comments toward your family member or friend, it still hurts and other people don't know them may not be as understanding. Approaching strangers is a totally different story...I still haven't figured that one out just yet and usually sit in silence<br /><br />I do have a few friends that casually use the <strong><span style="color: red;">"R"</span></strong> word and it always feels like they just screamed it through a mega phone. I stiffen and bristle, but I give them some slack. I know their hearts, but maybe my silence isn't doing them any favors because others don't and they may become the fuel that ignites a fire.RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-57667293730047583002014-04-13T09:37:00.001-07:002014-04-13T09:50:41.651-07:00Momma Said Knock You Out<div style="text-align: center;">
<b><i><span style="color: purple; font-size: large;">I LOVE BOXING!!!</span></i></b></div>
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When I first heard of my friend's boxing gym (<a href="http://boxingbunnies.wordpress.com/">Boxing Bunnies</a>) I thought, <span style="color: #f6b26b;">"I might enjoy that."</span> But I was very hesitant. I still had Evie at home full time, logistics just seemed insurmountable, and what if I looked ridiculous (<i><span style="color: purple;">at times I'm sure I do</span></i>). I told myself, <span style="color: #f6b26b;">"Wait until she is in school."</span> And that is exactly what I did…I waited. Then it was time to put up or shut up.</div>
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I took the leap in January and committed to two months of unlimited classes. I told myself I would go at least twice a week and as time progressed I would increase my workouts (<i><span style="color: purple;">I am now up to three classes a week</span></i>). During my first class I felt a bit intimidated. There were women there that had obviously been coming for quite some time (<i><span style="color: purple;">seriously, some of them are beasts on a heavy bag</span></i>). I felt like I just couldn't keep up. But I was not willing to turn in my boxing gloves just yet.</div>
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You see, I have some pretty strong motivations for pushing through the pain. I need to be stronger and healthier in order to care for Evie. She needs me. If I am not there for her, then who is going to be there? I also needed an outlet for my anger. Watching my baby girl struggle to do the simplest of tasks makes me so angry. It was festering inside like a cancer. I stopped feeling joyful. I stopped finding things humorous. I stopped being me. Sure, I could plaster on a smile and fake it well enough when I needed to, but those closest to us knew I was slipping away into a world without hope. Ann Marie and my fellow Bunnies became one of my life savers (<i><span style="color: purple;">the other one is a topic for another day</span></i>).</div>
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The workouts are intense, our trainer is an evil monster at times, but we always have fun and we are always supportive and encouraging. Don't feel comfortable doing Hello Dolly's? No problem we'll work out a modification that will work for you, but keep trying because you'll get there (<i><span style="color: purple;">barring you have a physical complication that makes it impossible</span></i>).</div>
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While I was initially intimidated by those feminine beasts beating those bags, I was also inspired to get to where they were. I was not going to be satisfied just getting through my workouts. I wanted to knock them out! It was a competition against myself to be better than I was during the previous workouts. And it is working.</div>
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<li>I can hold a plank for 60 second (<i><span style="color: purple;">not every time, but I'm getting there</span></i>).</li>
<li>I can do at least 10 push ups (<i><span style="color: purple;">on my knees</span></i>) in a row and not feel like I am going to die.</li>
<li>I have a pretty decent right hook.</li>
<li>My arms and calves are starting to get some definition.</li>
<li>My knees don't hurt as much as they did before I started boxing (<i><span style="color: purple;">except for a recent case of tendinitis</span></i>).</li>
<li>I can do a burpee!!!</li>
<li>I spar and have taken a few good shots to my well protected head.</li>
<li>I also learned how to braid my own hair.</li>
<li>And I swear my butt looks better (<i><span style="color: purple;">but it could be in my head</span></i>).</li>
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I didn't measure or weigh myself the first two months. That was not my goal (<i><span style="color: purple;">but it is a perk</span></i>) so it was not important. However, at the beginning of March, I measured myself and by the beginning of April, I was down an entire inch around my chest, half an inch in my waist, and a quarter of an inch in my hips. My clothes fit better (<i><span style="color: purple;">in fact some are too baggy</span></i>). People have been noticing that I look slimmer (<i><span style="color: purple;">Woo-Hoo!</span></i>) I'm happier and feel more balanced. I have more confidence in myself. I honestly feel like if I set my mind to something I am going to do it!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk_PqUmO5TnYKFX6bnSvIPFv1Ijb6JKjwkyE51xrReXX5s5n2wCiipD0Sk6ggisf1ibRt7FEqaHkGoh0omRGWR4zFRFVCjUCaqHEbR6dTZK1LQ7tZibaw3DxmJQZV_0fSRvszA3clh9kuT/s1600/1970400_10202849163206055_23515281_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk_PqUmO5TnYKFX6bnSvIPFv1Ijb6JKjwkyE51xrReXX5s5n2wCiipD0Sk6ggisf1ibRt7FEqaHkGoh0omRGWR4zFRFVCjUCaqHEbR6dTZK1LQ7tZibaw3DxmJQZV_0fSRvszA3clh9kuT/s1600/1970400_10202849163206055_23515281_n.jpg" height="200" width="200" /></a>That confidence has led me to decide that <b><span style="color: #f6b26b;">I CAN</span></b> (<i><span style="color: purple;">and will</span></i>) run a half marathon in honor of my daughter. Over the last four months I have built up my endurance, my strength, and my determination to cross that finish line at the Disney Princess Half Marathon<b><span style="color: #f6b26b;">*</span></b>.</div>
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<b><span style="color: #f6b26b;">*</span></b>Team Evie already has a group on Facebook to keep people up to date on my progress, fund raising (<i><span style="color: purple;">my personal goal is $5,500K</span></i>), and information on how you too can help us in our quest to cure Rett Syndrome by joining team GP2C at the Disney Princess Half Marathon in 2015! You don't have to run to help make a difference.</div>
RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-84088026200860280152014-02-06T03:31:00.001-08:002014-02-06T03:31:07.721-08:00Disabled Parking: We Don't WANT to Park There!<div class="separator" style="clear: both; text-align: center;">
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The <a href="http://hypotonicworld.blogspot.com/2013/03/getting-ready-for-wheels.html">decision to apply for a disabled parking permit</a> was not an easy one. I cried because I knew we needed it and I was angry because we needed it. I also feared that because Evie appeared <b><span style="color: #f6b26b;">"normal"</span></b> and didn't have her wheelchair that people would question our parking in a coveted (<i><span style="color: purple;">dripping with sarcasm</span></i>) disabled parking spot and confront us. I've heard horror stories about that happening. I wasn't concerned about crying in front of strangers as much as I was worried I'd end up in jail after knocking someone's teeth loose (<i><span style="color: purple;">did I mention I was angry?</span></i>).<br />
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I read about Florida's process for obtaining a disabled permit, received the appropriate forms from Evie's pediatrician, had a state ID made for her, paid the fees, and with a heavy heart and giant chip on my shoulder walked out of a local DMV with a blue parking placard. It sucked! It still sucks!</div>
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The rules for <a href="http://www.flhsmv.gov/dmv/disabled_pkg.html#2">obtaining</a>, <a href="http://www.flhsmv.gov/dmv/dosanddonts.html">using</a>, and renewing a disabled placard are fairly simple. The permits are registered to a <b><i><span style="color: #f6b26b;"><u>specific person</u></span></i></b> and if they are not in the vehicle then you are out of compliance with the law. Registration and ID must be available for verification if asked. When it is expired, go through the process again. If you don't go through the proper channels and don't have either one of these options:</div>
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<b>1.</b> Hanging <span style="color: blue;">Blue</span> (<i><span style="color: purple;">permanant</span></i>) or <span style="color: red;">Red</span> (<i><span style="color: purple;">temporary</span></i>) placard; which, should be displayed on your rearview and the permit number must be visible (<i><span style="color: purple;">some people lay them on their dash</span></i>).</div>
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<b> 2.</b> Disabled License Plate (<i><span style="color: purple;">which must be on a car registered to the disabled individual</span></i>)</div>
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(<i><span style="color: purple;">Florida also offers a version for Disabled Veterans</span></i>)</div>
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Then you <b><span style="color: red;">DO NOT</span></b> get to park in a disabled parking spot! No exceptions!! <b><span style="color: red;">EVER!!!</span></b> If you are caught using someone else's disabled permit you can be (<i><span style="color: purple;">and should be</span></i>) fined (<i><span style="color: purple;">those fines vary state to state</span></i>) and the person it is actually issued to legally can loose the <b><span style="color: blue;">privilege</span></b> (<i><span style="color: purple;">that's right it is a</span> <b><span style="color: blue;">privilege</span><span style="color: purple;">,</span></b><span style="color: purple;"> not a right</span></i>) of having it.</div>
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My moral compass goes beyond that point. If I am with Evie and another adult and I need to just pop into a store for a moment I <b><span style="color: red;">DO NOT</span></b> park in a disabled parking space. If she is not physically going into the store with me then I have no right to use that space (<i><span style="color: purple;">rain or shine, sick or well</span></i>). My legs work just fine. I do not have a heart condition. I do not have a respiratory condition. Walking just a bit further will not worsen my condition…in fact it may actually help it. I tell you all this because since receiving Evie's permit I see people abusing the <b><span style="color: blue;">privilege</span></b> to park in a disabled spot or just refusing to abide by the laws concerning them.</div>
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Just because you borrowed grandma's caddy for a quick trip to pick up her meds, <b><span style="color: red;">DOES NOT</span></b> mean you can park there.</div>
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Just because you are going to a crowded event and don't want to park in the south forty, <b><span style="color: red;">DOES NOT</span></b> mean you can park there. Some attendees at a Nascar event learned this lesson the expensive way.</div>
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Just because your spouse/friend/family member has a legal permit and you are diving their vehicle or have their placard without them, <b><span style="color: red;">DOES NOT</span></b> mean you can park there.</div>
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Just because you are pregnant, <b><span style="color: red;">DOES NOT</span></b> mean you can park there.</div>
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Just because you are injured or don't feel well, <b><span style="color: red;">DOES NOT</span></b> mean you can park there.</div>
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Just because you are making a quick return to Toys R Us, <b><span style="color: red;">DOES NOT</span></b> mean you can park there.</div>
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Just because you are waiting for someone at the doctor's office, <b><span style="color: red;">DOES NOT</span></b> mean you can park there. <b style="color: red;">EVER!!!</b></div>
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I was witness to this just this past week. The woman was casually reading a magazine and sipping coffee. I looked her car over and saw no permit…anywhere! I almost confronted her, but did not feel I would be able to contain my anger (<i><span style="color: purple;">but I did give her a pretty stern stare down</span></i>). I told the front desk admins and they went to inform her she needed to move her truck. She was already moving it before they could get to her. She knew she was in the wrong and that I caught her.</blockquote>
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I do not even <b><span style="color: red;">WANT</span></b> to park there!!! Do you think we are secretly gloating that on Black Friday we have permission to get the "good" spots? We have to jump over so many hurdles can you just act like decent human beings and give us this one?</div>
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Be warned… Karma is a heifer! Heaven forbid those of you that think it is ok to use those spots just for a minute will ever actually need those spots for legitimate reasons. Someday that may be the case. Then you will understand the frustration people like me, with a disabled toddler, family member, or friend, feels on a regular basis.</div>
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This is <b><span style="color: red;">NOT</span></b> a victimless crime. You <b><span style="color: blue;">ARE</span></b> hurting (<i><span style="color: purple;">maybe not physically…actually it does hurt some of us </span></i><span style="color: purple;"><i>physically</i></span>) someone else who needs that parking spot.</div>
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Don't believe me then do this simple exercise:</div>
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Buy a 20 pound sack of potatoes (<i><span style="color: purple;">or two 10lb bags</span></i>). Park two rows away in the middle or farthest distance away from the entrance of the store. Exit your car, grab your purse, the shopping cart cover, and a toy (<i><span style="color: purple;">whatever essentials you need for a trip to the store with a young child</span></i>). Now heave that 20 pound bag onto your shoulder or carry it on your hip (<i><span style="color: purple;">with one arm</span></i>) and walk to the entrance.</div>
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This still isn't the best representation of what it is like taking Evie into a store if I have to park farther out then necessary. While walking she pulls my hair, grabs my neck, loses her balance and falls backwards/sideways, and screams in the process. She is 3! I am not carrying a 6 month old. I can not stand her on the ground and tell her to hold my hand. I wish I could. Yes, she has a wheelchair (<i><span style="color: purple;">64lbs</span></i>). Yes, I could take it out of the back of the van and place her in it. If you've ever tried to grocery shop with a wheelchair then you know that this comes with its own set of hurdles to jump. It is not practical. If you want to get a taste of what that is like take a stroller into the grocery and try to maneuver it <b>and</b> a shopping cart.</div>
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If you see someone illegally parking in a disabled spot or using a placard illegally, you can help become a part of the solution. Don't be silent. If you have a smart phone download the <a href="http://www.parkingmobility.com/volunteer">Parking Mobility app</a>. It generates a report that goes directly to the town or city to notify them that there is a problem. I do not recommend you confront the driver directly (<i><span style="color: purple;">yes, I know how tempting it is</span></i>). Ever!</div>
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Please stop abusing disabled parking and permits. I beg you. The majority of us have them out of absolute necessity. We don't want<b> </b>to park there. I would rather be able to park anywhere else, but there.</div>
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RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-36436535324695368562014-02-02T05:00:00.001-08:002014-02-02T06:25:47.692-08:00"D" Day: One Year LaterA <a href="http://hypotonicworld.blogspot.com/2013/02/the-diagnosis-isdrum-roll.html">year ago</a>, we started laying the foundation of a new life. A life we were not prepared to live. A life consumed by Rett Syndrome. At first glance, I didn't believe the diagnosis of Rett was so bad. You see, for the two years prior to this day we were searching for an answer to our daughters developmental delays and physical ailments. Along the way, I became friends with other parents (<i><span style="color: purple;">my Hypotonic Warriors</span></i>) searching for an answer just like we were. Some of those answers came in the form of <a href="http://www.curesma.org/">Spinal Muscular Atrophy</a> Type I (<i><span style="color: purple;">to name one…you can read about Connor and his family at <a href="http://strugglesofansmafamily.blogspot.com/">Struggles Of An SMA Family</a></span></i>) for which there is no cure and life expectancy is very short (<i><span style="color: purple;">10% chance they will live past 2</span></i>). I cried with them. And I feared our own mystery diagnosis just a bit more. I never knew there were so many syndromes and diseases out there beyond the ones we have all heard of like Cerebral Palsy, Down Syndrome, and Autism. It has been a real eye opener followed by a squirt of lemon juice.<br />
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The morning the report arrived, (<i><span style="color: purple;">via email</span></i>) I was relaxed and enjoying a cup of coffee. Evie's dad said he received a notice from <a href="http://www.medicalneurogenetics.com/">Medical Neurogenetics</a> that we had a message. I was no longer relaxed. I leapt from my chair and ran to my computer to log into my encrypted account. I <strike>read</strike> quickly scanned the report (<i><span style="color: purple;">most of which I didn't understand…it was medical gobbley goop</span></i>) that said Evie had Rett Syndrome it didn't sound so bad. I was hopeful. I am still hopeful. But my rose color glasses quickly shattered. Rett has many layers that overlap one another and create compound complications with no easy solutions. I have lost count of all the things Rett has stolen from us as a family and Evie as a person. It is a long list. A lot of dreams and hopes were mourned during the last twelve months. The grieving is not over. There will be more. But I try not to bog you, my readers, down with all the dirty depressing details. I'm fairly certain you can fill in some of those blanks on your own.<br />
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So, as I sit here reflecting on the last year and trying to piece together my own feelings (<i><span style="color: purple;">way to many to manage at once</span></i>) I am going to force myself to tell you about the great things that have developed since <b><span style="color: #f6b26b;">"D" DAY</span></b>.<br />
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<span style="color: magenta;"><b>1.</b> </span>I became a part of a wonderful supportive family, my Rett family, that is always willing to help me when I have a question or a concern. Sometimes just being an active member of an online support group will answer more questions than I can even come up with on my own. We're all just trying to make the best of a pretty nasty diagnosis. Advocating for our girls (<i><span style="color: purple;">and boys</span></i>), learning to be their voice, giving them the opportunity to have a voice (<i><span style="color: purple;">via eye gaze communication systems</span></i>), researching new therapies, adapting toys, creating equipment, making our own solutions to problems most retail stores don't even address, cheering each other on when we think we can't take anymore, grieving with a family when another silent angel gains her wings, celebrating each victory… I could just keep going here.<br />
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<b><span style="color: magenta;">2. </span></b>I became involved with <a href="http://www.girlpower2cure.org/Home.aspx">Girl Power 2 Cure</a> (<i><span style="color: purple;">GP2C</span></i>). I met Ingrid (<i><span style="color: purple;">and many other members</span></i>), whose energy never ceases to amaze me, and whenever I spend even a hour with her I come away feeling hopeful, refreshed, and ready to tackle Rett Syndrome. I consider myself very fortunate to live just an hour away from their volunteer center and will be making my way there in the beginning of February to help prepare for the Disney Princess Half Marathon (<i><span style="color: purple;">if you would like to make a donation to Team Maria click</span></i> <i><span style="color: purple;"><a href="http://disney.teamgp2c.org/goto/msudduth">here</a></span></i>). This organization has a passion for a cure to Rett Syndrome, for our girls, and for their families. GP2C just launched <a href="http://www.rett-u.org/">Rett U</a>, which is an online learning platform for educators, therapists, physicians, and families of girls with Rett Syndrome. It is designed to help them learn, <b><span style="color: #f6b26b; font-family: inherit;">"<span style="background-color: white; font-size: 16px;">how to support </span><span style="background-color: white; font-size: 16px;">their students with Rett Syndrome and</span><span style="background-color: white; font-size: 16px;"> </span><span style="background-color: white; font-size: 16px;">push them to their highest levels of academic, physical and personal achievement."</span></span></b> To me it is revolutionary and a game changer. Watch this organization because they are doing <b><span style="color: #f6b26b;">BIG</span></b> things and I'm glad to be a part of them!<br />
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<b><span style="color: #f6b26b; font-size: large;">Awareness, research, hope, and a cure!</span></b></div>
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<b><span style="color: #f6b26b; font-size: large;">It is possible!! We believe!!!</span></b></div>
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<b><span style="color: magenta;">3.</span></b> Evie received her <a href="http://hypotonicworld.blogspot.com/2013/08/driving-miss-rae.html">wheelchair</a> and we've almost finished building her <a href="http://hypotonicworld.blogspot.com/2013/08/the-ramp.html">wheelchair ramp</a> on our home. That has been a work in progress for about six months now (<i><span style="color: purple;">nine if you count all the fund raising</span></i>) and we're getting close to the finish line. We could not have accomplished this monumental task without the help of my parents, our family, our friends, co-workers, our neighbor, and my parents church family at <a href="http://gardenviewjax.com/">Gardenview Baptist</a>. I felt so blessed by those that have come to our home on their days off to help and to those that donated items and helped work our massive garage sale (<i><span style="color: purple;">we're doing it again this spring so time to clean out your attics, closets, and garages</span></i>). I have been so overwhelmed by the support and generosity that I've cried.<br />
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<b><span style="color: magenta;">4.</span></b> We said goodbye to our Early Intervention therapist and then said hello to our new team of therapists and teachers at Evie schools (<i><span style="color: purple;">which I never wrote about</span></i>). I was so nervous when we first started the process to move her into the school system and it went so smoothly. That may not always be the case in future years, but it was a great first time experience with creating an individual education plan (<i><span style="color: purple;">IEP</span></i>). We have her enrolled in a classroom that is a certified <a href="http://www.move-international.org/">MOVE International</a> site. During her first week of school we got to see her stand upright and it was…there are really no words to adequately describe how it felt seeing her standing (<i><span style="color: purple;">she had assistance, but so what</span></i>). Three months later and she is taking strong steps with her right foot, sitting up straighter, babbling more, and is blossoming. I can't wait to see her bloom!<br />
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<b><span style="color: magenta;">5.</span></b> I submitted Evie for a runner through <a href="http://www.whoirun4.com/">I Run 4</a> and we were matched with Shana. She is a chiropractor in Knoxville, TN (<a href="http://www.knoxvillespine.com/">KnoxvilleSpine.com</a>) and it has been wonderful getting to know her. The relationship is one of support, encouragement, and inspiration. I Run 4 matches special needs children and adults with runners (<i><span style="color: purple;">but not limited to</span></i>) to help give them inspiration to continue running. Many families and runners develop close bonds with each other and if you would like to be matched, you can submit your request <a href="http://www.whoirun4.com/match-me/">here</a>.<br />
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<b><span style="color: magenta;">6. </span></b>I started boxing. After 3 years of lifting, carrying, and supporting Evie physically I ended up with multiple micro tears in my muscles (<i><span style="color: purple;">mainly upper body</span></i>). It was constant pain and I was supposed to <b><span style="color: #f6b26b;">"take it easy"</span></b> (<i><span style="color: purple;">haha!</span></i>) until it healed. I've known for at least a year that the physical demands placed on me would increase and I needed to strengthen my body. I'm not a Zumba girl (<i><span style="color: purple;">I have no rhythm</span></i>) and I'm not supposed to run (<i><span style="color: purple;">bad knees</span></i>). I also needed some kind of outlet for all the anger. I'm pretty angry sometimes… Angry at Rett (<i><span style="color: purple;">among other things</span></i>). I used to take a hammer to our dilapidated fence, but it wasn't enough. A friend has an all women's boxing gym called <a href="http://boxingbunnies.wordpress.com/">Boxing Bunnies</a>. I started going twice a week last month. It's a perfect fit for me. I'm already feeling a difference in my knees when I have to squat to pick up Evie's wheelchair (<i><span style="color: purple;">all 64 pounds!</span></i>). I'm still angry, but twice a week I get to direct that anger at a punching bag or wrecking ball. Maybe running will be placed back on the table in a few months.<br />
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<b><span style="color: magenta;">7.</span></b> Our oldest cat, Moo-Shu, has finally taken a liking to Evie! Over three years she went from keeping a safe distance to allowing Evie to fall onto her and not move.<br />
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I have so much more I'd love to share, but I have to stop at some point otherwise you'd be reading a novel and not a blog post. I'm actively trying to take better care of myself. Evie is making great progress at school. We have a wonderful Rett family to lean on in times of need. I'm inspired by GP2C's determination and hope. Evie has become an inspiration for others. We have been blessed beyond measure and I constantly remind myself of that. This last year has flown by and creeped by at the same time. I wonder what the next year holds for us. Oh, and I still have that <a href="http://hypotonicworld.blogspot.com/2013/02/the-diagnosis-isdrum-roll.html">Louisville Slugger</a> ready to swing!</div>
RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com1tag:blogger.com,1999:blog-175625908824414790.post-71170085424161636062014-01-23T12:35:00.004-08:002014-01-23T12:35:55.272-08:00Trouble with the Curve: A Tale of ScoliosisEvie has scoliosis. I noticed it when she was about 9 months old (<i><span style="color: purple;">summer 2011</span></i>). I thought I was losing my mind when I started seeing that tiny bulge in her back appear. I kept asking others if they saw it too. Much to my dismay, they didn't really "see" it or didn't think it was a big issue at the time (<i><span style="color: purple;">in all honesty we had so many concerns I can see where this one might have slipped into the low priority category</span></i>). I wasn't satisfied. I kept asking at every appointment with every doctor regardless of speciality. Finally, while she was being evaluated for Early Intervention the physical therapist looked at me and asked, "Has she been checked for scoliosis?" I almost burst into tears because she had the same feeling I had and I wasn't going crazy.<br />
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Fast forward to November 2013 (<i><span style="color: purple;">yep, it has taken me that long to sit down and write about this</span></i>) and that small bulge is creating a lot of buzz. It is no longer small. It grew…a <b><span style="color: #f6b26b;"><i>LOT!!!</i></span></b> What started as an innocent 8 degree curve went to about <a href="http://hypotonicworld.blogspot.com/2012/02/8-degrees.html">18-20 degrees in 2012</a> and then 40-45 in 2013. All color drained from my face when I saw her x-ray (<i><span style="color: purple;">I also had an uncensored moment complete with explatives</span></i>). I knew what it meant and what decisions we may be faced with in the near future. Before that point I was hopeful, but my gut knew. It seems my gut always knows.</div>
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Evie was fitted for a brace which is supposed to worn at night. We call it her little turtle shell (<i><span style="color: purple;">not very original, I know</span></i>). She was a trooper when we met with Mr. Bob for her cast and fitting. The first week went perfectly without incident. The tides have changed and now she is becoming more agitated by her turtle shell. Some night she wakes up crying and the only thing that will soothe her is the removal of her brace. On nights she is battling severe, body shaking coughs I don't agitate her further by constricting her chest and mobility. These are occasional events though and the majority of the time she wears her shell. We started taking her shell to school so she can wear it while in her stander…it can't hurt.<br />
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<tr><td class="tr-caption" style="text-align: center;">Mr. Bob showing me an example of a brace.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf4MXDsTCuWTx3rW_-gaqxrbFjmH5lsaeVDXCibMruwvW-F9eeruegeIKeiJeZCWxPm3XCczI2nt5KMTwfl_45EmvflIBSH4cbgvHjFE92VSuijBBNgnXA07Kj_ciAY-qkxWWmYNNVKA4l/s1600/DSC_0054.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf4MXDsTCuWTx3rW_-gaqxrbFjmH5lsaeVDXCibMruwvW-F9eeruegeIKeiJeZCWxPm3XCczI2nt5KMTwfl_45EmvflIBSH4cbgvHjFE92VSuijBBNgnXA07Kj_ciAY-qkxWWmYNNVKA4l/s1600/DSC_0054.jpg" height="320" width="211" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Prepping her for the casting.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-EqZ-1j-CmYhW3wkopr1fJqMtGnRAT8V9N-trt9CMOaRIjZMADhTooTTunGEsd9chEvFLm6ZVD4_-jkBLEwgd39rA1AouZP9FQEKO_wP2Q59uGpfG9j6go7St0J0n7upYgY8-KXWumoSb/s1600/DSC_0057.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-EqZ-1j-CmYhW3wkopr1fJqMtGnRAT8V9N-trt9CMOaRIjZMADhTooTTunGEsd9chEvFLm6ZVD4_-jkBLEwgd39rA1AouZP9FQEKO_wP2Q59uGpfG9j6go7St0J0n7upYgY8-KXWumoSb/s1600/DSC_0057.JPG" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Making the cast. This was a bit messy.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGUPu8IY4rBh07_RQIM9E8zSdU05prl193zSGtwwIeL41zVQ2J22srGwbKpOEiqkC85-KpmB-REzafbenbm5MmBUElPOWVcPHtJj30wfXhZqNObRMy37yg3lLfituR9uypUIxUGhFwelha/s1600/DSC_0062.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGUPu8IY4rBh07_RQIM9E8zSdU05prl193zSGtwwIeL41zVQ2J22srGwbKpOEiqkC85-KpmB-REzafbenbm5MmBUElPOWVcPHtJj30wfXhZqNObRMy37yg3lLfituR9uypUIxUGhFwelha/s1600/DSC_0062.JPG" height="263" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After Mr. Bob made the cast, he drew a smiley face on it.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDr13yAPyYxGD13QZe6f0Fb_4puTnoIlNLKioo2FIYFyft0B2uv_zW53iYMUYE0Jkr1sC5RGZ5wuyFvsCErYrmGb8cR7EeWVgprNGNeqCRRlM8NtKfeRVJp9a6gebzkak72qsnSud7XnrM/s1600/IMG_0930.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDr13yAPyYxGD13QZe6f0Fb_4puTnoIlNLKioo2FIYFyft0B2uv_zW53iYMUYE0Jkr1sC5RGZ5wuyFvsCErYrmGb8cR7EeWVgprNGNeqCRRlM8NtKfeRVJp9a6gebzkak72qsnSud7XnrM/s1600/IMG_0930.jpg" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her completed shell. You can tell she isn't thrilled.<br />
Mr. Bob was able to match the brace to her current AFO's.</td></tr>
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However, I don't believe it is helping (<i><span style="color: purple;">but since I don't have x-ray vision I can't be sure</span></i>). We have to wait until next Tuesday (<i><span style="color: purple;">Jan 28th</span></i>) to know for sure. I hate waiting. I lift her from her activity chair and I can see the curve. I look at her sitting on the couch and I can see the curve. I lay her down in her bath chair and I can see the curve. It shows up everywhere. It terrifies me. The prospect of an eventual surgery twists my stomach into a giant ball of knots.<br />
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I wanted to pursue some alternative treatments, but due to insurance caps, financial restraints, and chiropractic adjustments being lumped in with all of her therapies (<i><span style="color: purple;">speech/feeding, physical, occupational</span></i>) it just isn't feasible right now. We get 35 visits total! That's it folks. Unfortunately, that is the case for many people. So, we have to make a decision between pursuing speech/feeding (<i><span style="color: purple;">not currently receiving at school</span></i>) and chiropractic adjustments to help her curve. Both are important and have life altering impact (<i><span style="color: purple;">speech will help us move closer to an eye gaze communication device</span></i>). Which way do we go? What if we make the wrong choice?<br />
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Another beneficial item for her scoliosis is a <a href="http://www.leckey.com/products/mygo-stander/show/posture-function#subnav">stander</a> (<i><span style="color: purple;">a type of medical equipment that helps improve posture and function</span></i>). But this has turned into my own personal holy grail and is a story for another post.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjziNkThjnhZj0ysOOQuGs19yFsOdhHnYlgh3Gqy9tBBRmE9mriWbjUBwhOSsK-SEo5Q5MWt9nbSwcbA7iUDqgPePQwClQt18Z2RerePl3iwGucPdwVxNzRdvcEwnomNtyzke7QVbQecXsH/s1600/image-2-angle-range.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjziNkThjnhZj0ysOOQuGs19yFsOdhHnYlgh3Gqy9tBBRmE9mriWbjUBwhOSsK-SEo5Q5MWt9nbSwcbA7iUDqgPePQwClQt18Z2RerePl3iwGucPdwVxNzRdvcEwnomNtyzke7QVbQecXsH/s1600/image-2-angle-range.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image of a <a href="http://www.leckey.com/products/mygo-stander/">MyGo Stander</a> by Leckey.</td></tr>
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Ultimately, only time will tell if we made the right decision. We are waiting for next weeks x-rays before we set our course, but I'm leaning towards keeping speech/feeding therapy intact. But what if I'm wrong...</div>
RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-81556074397610129632013-12-17T08:28:00.001-08:002013-12-17T08:42:11.851-08:00Road Safety: What If You're Not Conscious?Every parent can relate to the <b><span style="color: #f6b26b;">"what if"</span></b> dialogue that runs through my mind. We shoo it away not wanting to think ill or dwell on all the things that could go wrong and just hope that the worst won't happen to us. We can't imagine not having our little ones with us or heaven forbid us not being here for them. It is a universal fear.<br />
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There are things we do that offer us some peace of mind and if you haven't done any of these (<i><span style="color: purple;">which honestly we haven't and need to</span></i>) then maybe it's time to be proactive and silence some of those <b><span style="color: #f6b26b;">"what ifs"</span></b> that plague us. Some of the <b><span style="color: #f6b26b;">BIGGER</span></b> things are a bit more daunting (<i><span style="color: purple;">like setting up a will, trust, or designating guardians</span></i>), but maybe we should start off with something <b><span style="color: #f6b26b;">smaller</span></b> and a bit less intimidating.</div>
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One of the things that I fear the most is being unconscious after a car accident (<i><span style="color: purple;">if you knew my track record you'd totally understand why</span></i>). If I do not have all of my faculties (<i><span style="color: purple;">or if I'm knocked out</span></i>), I will not be able tell the EMT's about my daughter needs or her medical conditions. Who is going to tell them all the things they need to know about Rae? We always assume we'll be fine or they'll be able to contact the right person, but that's not always the case. There are a few simple solutions to this anxiety inducing fear.</div>
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Here are a few helpful products and ideas I've found:</div>
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1. An <a href="http://www.amazon.com/Special-Needs-Child-Emergency-Decal/dp/B005MZXZ7S/ref=sr_1_2?ie=UTF8&qid=1387286393&sr=8-2&keywords=special+needs+child+sticker">informational sticker</a> for your vehicle: You can find this one on Amazon.com and it is $2.89 per sticker (<i><span style="color: purple;">plus $1.50 shipping…I'm sure price is subject to change</span></i>). I have one on each side of our van. It gives me some peace of mind at a low cost.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU__7GwxA-ioy1EnZSK6DXEy8RVYhCFWF4jCwVbDJp1g4qLOYo16UxhJmm2sNpBdHN611zHTaSsP3nAGkwWnH4R-Xz26HRDRf7FvsL20UKcqWRD09JiaGrmOP4QHZFeQMWZ13oLyo4zgLM/s1600/41WArbDN95L.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU__7GwxA-ioy1EnZSK6DXEy8RVYhCFWF4jCwVbDJp1g4qLOYo16UxhJmm2sNpBdHN611zHTaSsP3nAGkwWnH4R-Xz26HRDRf7FvsL20UKcqWRD09JiaGrmOP4QHZFeQMWZ13oLyo4zgLM/s1600/41WArbDN95L.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This one is made by <a href="http://www.amazon.com/Special-Needs-Child-Emergency-Decal/dp/B005MZXZ7S/ref=sr_1_2?ie=UTF8&qid=1387286393&sr=8-2&keywords=special+needs+child+sticker">Magnet America</a>.</td></tr>
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2. Tape emergency contact information (<i><span style="color: purple;">and any other pertinent info</span></i>) onto your child's car seat. I have seen this on Pinterest and still haven't made one (<i><span style="color: purple;">it's so simple, why have I not done this yet?!?</span></i>). You can find a list of information to include over at <a href="http://dontpatthebelly.com/2012/04/car-seat-emergency-information-stickers/">Don't Pat the Belly</a> and remember to look at your carseat to determine the best place to put your sticker (<i><span style="color: purple;">basically make sure it will fit</span></i>). Other than the cost of ink, paper, and tape this is almost free!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgucElQi5VtIJlv1WtocvpNimtm4jVjsBRpVjQLa429MGUBF3N243UEtl7-aMIE46Z_BDBTZd7dSJqdJocNkwva7nitWDvpOhgzchEEDOSTvigvZtWTW-Cc_0et_A9bgwvCDWGdc9bXRksy/s1600/carseat-0011-577x1024.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgucElQi5VtIJlv1WtocvpNimtm4jVjsBRpVjQLa429MGUBF3N243UEtl7-aMIE46Z_BDBTZd7dSJqdJocNkwva7nitWDvpOhgzchEEDOSTvigvZtWTW-Cc_0et_A9bgwvCDWGdc9bXRksy/s320/carseat-0011-577x1024.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image from <a href="http://dontpatthebelly.com/2012/04/car-seat-emergency-information-stickers/">www.dontpatthebelly.com</a>.</td></tr>
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3. There's an app for that! Did you know there is an app you can download call <a href="https://itunes.apple.com/us/app/lostfound-emergency-contact/id531538181?mt=8">LostFound - Emergency Contact Banner Maker</a> by Doubleforte. The app will allow you to create an image with emergency contact information on it for your wallpaper lock screen. This became more of a necessity when Apple added the passcode lock with their last update. <b><span style="color: #f6b26b;"><u>The app is .99 cents!</u></span></b> A simple and inexpensive way for emergency responders to know who to contact when you aren't able to tell them. I have the app on my phone and Rae's iPad. The iPad app will allow you to enter more information than the iPhone app so I was able to add Rae's diagnoses (<i><span style="color: purple;">critical ones</span></i>) and her allergy to penicillin.</div>
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<tr><td class="tr-caption" style="text-align: center;">Screenshot from iTunes Store.</td></tr>
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4. Medical Alert Jewelry: <a href="http://www.laurenshope.com/">Lauren's Hope</a> offers a large variety of customizable jewelry for everyone (<i><span style="color: purple;">men, women, girls, boys, and pets</span></i>) that will inform people about your medical needs in the event of an emergency. They are stylish, fun, and functional! We haven't purchased one for Rae yet, but will in the near future. Prices vary depending on the type of bracelet and number of lines.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTFHvrQ9ktqlVBZpYRc2MZtL2FFvypqYGQPn248xtqJDkwvVauDDTPF9VdrHJKWuKko2mqAR0e62BnKixFFx4FtvxQYrSOmwy7k-_5XiDOIKOT-jjFNtKLFxiSX2JahhxmTD3QAA3-6czK/s1600/ShowImage.aspx.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTFHvrQ9ktqlVBZpYRc2MZtL2FFvypqYGQPn248xtqJDkwvVauDDTPF9VdrHJKWuKko2mqAR0e62BnKixFFx4FtvxQYrSOmwy7k-_5XiDOIKOT-jjFNtKLFxiSX2JahhxmTD3QAA3-6czK/s320/ShowImage.aspx.jpeg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: white; font-family: 'Times New Roman'; text-align: start;"><span style="font-size: x-small;"><a href="http://www.laurenshope.com/product/2097/A244/purple-lipgloss-medical-id-bracelet/size">Purple Lipgloss Medical ID Bracelet</a> by Lauren's Hope.</span></span></td></tr>
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<br />5. <a href="http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=car+escape+hammer">Car Escape Hammer</a>: If you are conscious, but can't get your seatbelt off or your window down you may need one of these handy little hammers (<i><span style="color: purple;">they even have a keychain version</span></i>). The prices vary (<i><span style="color: purple;"><a href="http://www.amazon.com/LifeHammer-Original-Emergency-Hammer-Orange/dp/B000BN3A4Y/ref=sr_1_3?ie=UTF8&qid=1387298033&sr=8-3&keywords=car+escape+hammer">LifeHammer</a> is currently $14.80 on Amazon.com</span></i>), but you can easily purchase one for under $10 and they are sold at many major retailers. My friend used to worry about getting in an accident, going off a bridge, and getting trapped in the car with her kids. Then my dad gave her one of these and it gave her a little piece of mind. I have one of these tucked in the side pocket of my door. I know this veers off topic just a tad, but I feel these hammers should be in every vehicle on the road.<div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvffVoSbb4UiqrNG58w09Hn_z5P9PVePoF_aR4lXYqNlVQtar8KWC1A0Q2s3_SDcVqnmatqYWpxx_T8_zgF7VccvP10lsGmsYEvEh0cdcsLaKvfgNZPhJKVM8zZ0VhTTn3WVVQlFndB-91/s1600/41YCD8805YL.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvffVoSbb4UiqrNG58w09Hn_z5P9PVePoF_aR4lXYqNlVQtar8KWC1A0Q2s3_SDcVqnmatqYWpxx_T8_zgF7VccvP10lsGmsYEvEh0cdcsLaKvfgNZPhJKVM8zZ0VhTTn3WVVQlFndB-91/s320/41YCD8805YL.jpg" width="224" /></a></div>
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<br />I have a few more ideas that may be helpful like small luggage tags for her backpack or an insert that stays in our glovebox with our registration and proof of insurance, but I have not done either of those things yet. This is something that I need to put at the top of my to do list. We are on the road more often than we used to be since Rae started school and my lack of preparedness is being to bother me.<br />
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My project for next week is to sit down and create an emergency medical information sheet. It will list Rae's diagnoses, her doctors, her allergies, our preferred hospital, a list of her current medications (<i><span style="color: purple;">dose and time given</span></i>), her emergency contacts (<i><span style="color: purple;">Daddy, Mimi, and G-Boss</span></i>), and anything else we feel is important for someone to know about her. I will also do one for myself, but it will be a much shorter list.<br />
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It's the holidays and that means people are traveling to see loved ones and friends. Take a couple of minutes to write out your emergency information and give yourself the gift of peace of mind. Be safe out there and make sure those that are there to help have the information they need to in order to help you or your little ones.</div>
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RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-67789641652440543072013-12-16T06:28:00.000-08:002013-12-16T06:28:51.499-08:00Playing With and For My Daughter<b><span style="color: #f6b26b;">*ding*</span></b><br />
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The chime on my little girls Playskool kitchenette oven just chimed and that means the cake is done. She gleefully opens the door and with a tiny oven mitt protecting her little hand pulls out an empty pan. The fact that it is empty doesn't matter to her because she's pretending and the cake is fresh from her imagination.<br />
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As I watch this scene play out I know what role I will be asked to play…I am the cake taster. I sit at her tiny princess table, my knees high in the air, waiting for her latest creation. I know whatever she brings me will taste delicious. She is a culinary master. Many would expect nothing less from my little girl. She has been toddling around our kitchen for four years watching me bake pies, cakes, and cookies. As she walks towards me an excited smile spreads across her angelic face. This must be a really special cake.<br />
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"Here mommy," she says as she slices a piece of cake for me, "it's chocolate." (<i><span style="color: purple;">her favorite</span></i>)<br />
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She watches as I pick up my pink fork and dig in, waiting for my verdict.<br />
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"Mmmmm! It's so moist and yummy! This is your best cake yet!"<br />
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Her smile reaches her eyes, making them sparkle, as she quickly turns and skips back to her kitchen for another baking experiment.<br />
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I loved making pretend cakes when I was younger, then Play-Doh cakes, and finally real cakes. Baking was an outlet for me and I was pretty decent at it. When I thought of having children, I dreamed this scene many times and it was pretty much how I saw my life as a mother playing out. I would play with my daughter. Eat her imaginary cakes. Teach her to bake real ones one day. Oooo and Ahhh over her creations and help her figure out what went wrong because sometimes baking does go awry <i><span style="color: purple;">(my solution for a sunken cake is to turn it into a punch bowl cake</span></i>).<br />
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Like baking life can also go awry.<br />
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I don't really play <b><span style="color: #f6b26b;">"with"</span></b> Rae. A lot of times I end up playing <b><span style="color: #f6b26b;">"for"</span></b> her and there's a big difference.<br />
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Playing <b><span style="color: #f6b26b;">"with"</span></b> her includes rousing peek-a-boo sessions, blowing bubbles towards her so she can try to pop them with her shaky hands, sitting at the piano while we both tickle the ivories, clapping her hands to silly songs, or sitting her monkey <b><span style="color: #f6b26b;">"Mo-Mo"</span></b> on my head and pretend to sneeze making him fly off and hit her (<i><span style="color: purple;">she thinks this is a hilarious…I have videos to prove it</span></i>). There are other things too like reading books, complete with silly voices and sounds, and going over flash cards on her iPad. From time to time she will lead the activity like dropping her shapes in a bucket, pushing the handle on her gum ball machine (<i><span style="color: purple;">she really loves that toy</span></i>), or scooting on her butt to reach a toy. But there are times when I am playing <b><span style="color: #f6b26b;">"for"</span></b> her.<br />
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If the activity requires tapping into ones imagination and acting out what you think up then it is <b><span style="color: #f6b26b;">MY</span></b> imagination, not <b><span style="color: #f6b26b;">HERS</span></b>. She doesn't have an effective way of letting me know what she is thinking. I might pick up her doll and pretend that it is dancing a reel with Mo-Mo the monkey, but maybe she wants the doll to be a doctor and healing Mo-Mo the way Doc McStuffins fixes Chilly and Stuffy on her favorite cartoon. I just have no way of knowing. I am playing "for" her at this point. It feels very different and I'm still trying to adapt.<br />
<br />
There is no kitchenette nestled in the corner of our home. That wound still causes me a little twinge of pain when I'm in the toy section of any retail store. Most of the time I am okay with that, but around her birthday and Christmas it is more difficult.<br />
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Now I use my imagination to come up with ways to play "with" Rae, not just "for" her, and it takes a lot of out of the box thinking (<i><span style="color: purple;">and a lot of energy and shopping</span></i>). We adapt toys, add suction cups, and create clamps. We buy, build, or sew things I see that might work. For example: The other day I found an artist board that would allow us to paint and color at home! I was so excited!! To paint or color with her requires me to grow a third (<i><span style="color: purple;">sometimes fourth</span></i>) arm and this board would secure the paper and would be easy to prop up which would enable to me to assist Rae. I'm pretty sure Santa is going to slip the board along with some more fat crayons and markers (<i><span style="color: purple;">Crayola of course</span></i>) under the tree this year. Shhhh…don't tell Rae.RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-89220831020045969402013-12-06T04:18:00.002-08:002013-12-19T05:09:35.399-08:00Christmas Wish List 2013Twice a year we are asked about what kind of gift Rae might like to receive and honestly sometimes we don't have a clue. She has tons of toys, some of which she loves, some she can't really play with, and others that she is actually scared of so we don't' really play with those. She has a closet full of clothes because I feel it is one of the few things I buy for her that doesn't cause me anxiety (<i><span style="color: purple;">unless it's shoes that particular purchase has reduced me to tears</span></i>). Everything else just seems a bit expensive or too practical (<i><span style="color: purple;">I love giving useful gifts</span></i>) to suggest as a gift.<br />
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So, here I sit trying to think of things that Rae may enjoy or need (<i><span style="color: purple;">you can also check out this <a href="http://rettgirl.blogspot.com/2013/11/holiday-gift-ideas-2013.html">list</a></span></i>).</div>
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1. A <a href="http://www.amazon.com/RCA-DRC79982-9-Inch-Mobile-Additional/dp/B00BUL4NLU/ref=sr_1_4?s=electronics&ie=UTF8&qid=1386263845&sr=1-4&keywords=portable+dvd+player">Portable DVD Player</a>. We are in the car or waiting in doctor's offices a lot. It would also be helpful for those mornings when she wakes up at 3am and the only way to keep her calm is with Little Einsteins or Doc McStuffins.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQmNuR5T4DkXL7QDCKGAQ_LksO05_etk-bA_72ukKYHIS8fGF1QRvZ60Lixmmn-yGtJz5ZBU4DvfqBNHUtYXOUw6DVCr3xZBgQ7Pvir0jzMH1rwuKeNfqmZVhblmTg9_MOlopZnZmOiRrg/s1600/41Q43N6FB7L.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="317" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQmNuR5T4DkXL7QDCKGAQ_LksO05_etk-bA_72ukKYHIS8fGF1QRvZ60Lixmmn-yGtJz5ZBU4DvfqBNHUtYXOUw6DVCr3xZBgQ7Pvir0jzMH1rwuKeNfqmZVhblmTg9_MOlopZnZmOiRrg/s320/41Q43N6FB7L.jpg" width="320" /></a></div>
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2. A <a href="http://www.arkon.com/tablet-accessories/heavy-duty-adjustable-flexible-tablet-clamp.html">Tablet C Clamp Mount</a>: This is the most practical gift for Rae. It will attach to her wheelchair (<i><span style="color: purple;">or table</span></i>) and hold her iPad so she can use it without knocking onto the ground (<i><span style="color: purple;">she did just this over the summer and we the glass shattered</span></i>).</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfioN1jHRiTeSZ-hDH6sjWn-9MvpdHJ65h14J2z51_UwA8vfbZYtkQ81eh7_zULNO0ZsV3lEkdOaKJpQnuycXGVtWVQ24qxAL9_FVOA3m6pjv3PE4cN8gdneACXChW8sBz0weG0hIDa7zw/s1600/TAB086-12.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfioN1jHRiTeSZ-hDH6sjWn-9MvpdHJ65h14J2z51_UwA8vfbZYtkQ81eh7_zULNO0ZsV3lEkdOaKJpQnuycXGVtWVQ24qxAL9_FVOA3m6pjv3PE4cN8gdneACXChW8sBz0weG0hIDa7zw/s320/TAB086-12.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This would have totally prevented the damage below.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhhwcYu03Ppk_DaI8hSEa7fqCz5nxVE6BD0mh9uox-7GZazkuYfzf1sRBV6l-MK3eEGno0ZdJ_s0lAzFxVEfQrESyk78cicmCUfC_ZwpVoien_n0ZWnNaHMMbo46qFGxsomvXS4x5zViqV/s1600/67455_10201218507000669_575365363_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhhwcYu03Ppk_DaI8hSEa7fqCz5nxVE6BD0mh9uox-7GZazkuYfzf1sRBV6l-MK3eEGno0ZdJ_s0lAzFxVEfQrESyk78cicmCUfC_ZwpVoien_n0ZWnNaHMMbo46qFGxsomvXS4x5zViqV/s320/67455_10201218507000669_575365363_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I taped the corner with painter's tape so we could safely<br />
use it until we could get a replacement.</td></tr>
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3. Knee Socks!!! Any kind, any color (<i><span style="color: purple;">especially neutrals</span></i>), and pattern. They work great under her AFO's and are a big pain in the butt to find. If I find them I snatch them up because she wears them almost year round and you can't find them easily in the summer. What makes this a difficult item to find is her foot size (<i><span style="color: purple;">6 to 7 toddler</span></i>). Leg warmers are also awesome!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiGoOFAcAfUp04u5H4TXw7ajVDwALI-yJa4EgZst7SOv4j2lfj3l6RlO_zUkZP0hBGIsM21v-UzDGKJRzuHu9w4NXoYWJhbAkD1M1C7_eoQgebCshDMEkE7GhbtQGun8ak31UtJcbq7iIO/s1600/2270464-p-MULTIVIEW.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiGoOFAcAfUp04u5H4TXw7ajVDwALI-yJa4EgZst7SOv4j2lfj3l6RlO_zUkZP0hBGIsM21v-UzDGKJRzuHu9w4NXoYWJhbAkD1M1C7_eoQgebCshDMEkE7GhbtQGun8ak31UtJcbq7iIO/s320/2270464-p-MULTIVIEW.jpg" width="320" /></a></div>
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4. Books! Almost any story that has a rhythm to it similar to Dr. Seuss (<i><span style="color: purple;">but she isn't too fond of him just yet, I've tried, she gets antsy after a few pages</span></i>). Another example of a great book for Rae is the Llama Llama series (<i><span style="color: purple;">we have them all</span></i>). </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOXtXIzTiS56F2F_leiw-xXq1l5vOyhTbATSedYusaYcQbehL7KKRAzw-zEEaQ4HsipmKPigj41gazc1kJPLvFICd5VJPEpr7TyKXh5qU76a8toa3_9XwLfMxI6dBxzfSBxb0D55cdHgy1/s1600/Llama+Llama+Holiday+Drama.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOXtXIzTiS56F2F_leiw-xXq1l5vOyhTbATSedYusaYcQbehL7KKRAzw-zEEaQ4HsipmKPigj41gazc1kJPLvFICd5VJPEpr7TyKXh5qU76a8toa3_9XwLfMxI6dBxzfSBxb0D55cdHgy1/s320/Llama+Llama+Holiday+Drama.jpg" width="312" /></a></div>
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5. iTunes Gift Cards. I know everyone isn't really comfortable with giving gift cards (<i><span style="color: purple;">I don't really like giving them either</span></i>), but sometimes this really is the most practical thing for Rae. She has an iPad for entertainment and we are working on finding a communication app for her (<i><span style="color: purple;">there are SO MANY!</span></i>) until we can acquire a Tobii. Right now she watches her shows, plays with ability/age appropriate apps (<i><span style="color: purple;">but loves listening to me play Angry Birds & sometimes she helps</span></i>), or goes over flashcards/vocabulary.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP-fxCK3JtjnC_li-7KnoE_7RBybCSPSmOnALECqbNxo0PVRVc1n_XJunSctWPQ_JDdryegkuNhN40FTQvQy_8Fj-AYTH2zmYzegFxQLtPBQPgxwC0vqsSndwgwImXTJnew17IJPdNOwt2/s1600/images-1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP-fxCK3JtjnC_li-7KnoE_7RBybCSPSmOnALECqbNxo0PVRVc1n_XJunSctWPQ_JDdryegkuNhN40FTQvQy_8Fj-AYTH2zmYzegFxQLtPBQPgxwC0vqsSndwgwImXTJnew17IJPdNOwt2/s1600/images-1.jpeg" /></a></div>
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6. A <a href="http://www.amazon.com/Lava-Lite-2-Inch-Classic-White/dp/B0009RG8U0/ref=sr_1_16?ie=UTF8&qid=1386267034&sr=8-16&keywords=lava+lamp">Lava Lamp</a> (<i><span style="color: purple;">purple or pink</span></i>): We think she'll like watching the lava float up and down in the lamp and it might also be a good alternative for her semi-bright table lamp when she wakes at 3am.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjco71HtHCH0Baq3_7S1DhmVDP1CIDVRetZwXfFLiUVcvQfv0BoZRJdKkke_qSp6SHmOPuFp5EpEjQKpjQg3Hhf-B6ahG70CK7cbAxQ7r-imJptM-2HZcf8ThZWqxeI2PBr5MYi0YqwGN3c/s1600/31Y9MBHQ3PL.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjco71HtHCH0Baq3_7S1DhmVDP1CIDVRetZwXfFLiUVcvQfv0BoZRJdKkke_qSp6SHmOPuFp5EpEjQKpjQg3Hhf-B6ahG70CK7cbAxQ7r-imJptM-2HZcf8ThZWqxeI2PBr5MYi0YqwGN3c/s320/31Y9MBHQ3PL.jpg" width="91" /></a></div>
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7. A <a href="http://www.amazon.com/Dycem-Rectangular-Table-Mat-Blue/dp/B000C42QA6/ref=sr_1_13?ie=UTF8&qid=1386266935&sr=8-13&keywords=Non-slip+Table+Mat">Non Slip Table Mat</a>: This helps keeps her toys from sliding off of her trays which can be very frustrating for her. They come in circles or rectangles.</div>
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8. Movies/TV Show DVD's: This is the first year where we have noticed an increase in her engagement with movies. Last year I tried to watch Rudolph the Red-Nosed Reindeer with her and about 10 minutes in she was screaming and obviously over it (<i><span style="color: purple;">which broke my heart because it's one of my favorites</span></i>). This year she stayed alert and engaged through the majority of the film. She didn't scream once (<i><span style="color: purple;">except when she was laughing</span></i>). I was thrilled!! She also loves Daniel Tiger's Neighborhood, Little Einsteins, Doc McStuffins, Princess Sofia, The Muppets (<i><span style="color: purple;">especially Animal</span></i>), and South Park/Family Guy (<i><span style="color: purple;">don't judge…she likes strange sounds and physical comedy</span></i>). She already owns some of these so if you aren't sure just call me (<i><span style="color: purple;">family/close friends…I am not soliciting gifts from my readers</span></i>).</div>
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9. <b><span style="color: #f6b26b;">Nothing.</span></b> Seriously, you don't have to get her anything. If you see her give her a hug, tell her hello, and smile. If you have some chocolate or cake, she'd love to help you eat it (<i><span style="color: purple;">and maybe a nip of your finger</span></i>). If you only know her through this blog that is enough for us because we're about raising awareness of Rett Syndrome and Hypotonia and you are a part of that effort.<br />
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We have been very fortunate and blessed (<i><span style="color: purple;">which doesn't mean we don't struggle</span></i>) to have our needs meet beyond the minimum. We have great friends willing to pitch in and <a href="https://www.youcaring.com/help-a-neighbor/wheelchair-ramp-for-rae/45609">help us raise funds</a> and build a ramp for Rae (<i><span style="color: purple;">and <a href="http://www.girlpower2cure.org/Home.aspx">donate towards research</a> too</span></i>). We have a roof over our heads and food in our pantry. Rae is relatively healthy and extremely happy. She doesn't want for much and that's a wonderful thing.</div>
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I hope you all have a Merry Christmas this year!</div>
RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com0tag:blogger.com,1999:blog-175625908824414790.post-72742615531358845802013-12-03T08:33:00.003-08:002013-12-03T08:33:16.450-08:00That's Almost Done…What's Next???Ok. Now that the ramp is almost complete (<i><span style="color: purple;">we still need to build the roof, add new gutters, install railing, and stain it</span></i>), what do we need to do next?!?!<br />
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Well, we have a few <b><span style="color: #f6b26b;">GIANT</span></b> holes in our fence which makes our home a tad to visible for our taste. That should be our next big to do we need to check off our list. We can all agree with that decision.<br />
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But wait, you're forgetting that Rae is getting heavier and your back isn't getting younger so you may want to consider throwing all your financial efforts into getting that wheelchair accessible van. It doesn't have to be new (<i><span style="color: purple;">to the tune of $45K to $65K.</span></i>). A used one with low mileage would be fine (<i><span style="color: purple;">$20K might get you a 2004</span></i>). Besides you're only going to need one temporarily…four maybe five years tops because honey that girl is going to walk! Very true, I guess that's the next thing we should tackle.<br />
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<b><span style="color: #f6b26b;">*Tsk, Tsk, Tsk*</span></b><br />
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Has it totally slipped your mind that you have a teeny tiny bathroom door that is becoming harder to maneuver her (<i><span style="color: purple;">over 3 ft body</span></i>) through after bath time, not to mention the strain on your back hefting her in and out of the tub when she's all slippery? Seriously, you guys need to work on your bathroom (<i><span style="color: purple;">which means removing the current walk-in closet, building a new non-walk-in closet, relocating the door, and replacing the flooring…carpet or hardwood/laminate???</span></i>) and get it ready because unlike the (<i><span style="color: purple;">hopeful</span></i>) brief use you'll get out of the van, the bathroom is a forever solution and if done properly will add some value to your home. It would be a relief to have this one off your plate.<br />
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You have lost your mind! She needs a proper bed! Are you daft woman?!? The girl can't sleep in a crib forever and it would be so much easier to change her diaper and get her ready for school if you could sit on the bed while doing so. Don't forget the added bonus of being able to lay down with her when she is having a rough night which happens quite often. This is the obvious choice…DUH!<br />
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<b><span style="color: #f6b26b;">Not so fast...</span></b><br />
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What about the living room? When are you going to tackle the seating issues in there? Do you want to build a raised platform or buy her a recliner? She can't just sit on the floor forever you know! Of course she can't, but you're forgetting that you are trying to acquire a stander and that will give you another way to position her in the living room and when she isn't in her equipment she can sit on the couch. But she likes to lay on the floor! She doesn't always want to sit up so it would make more sense to build a platform. It would be so much easier to pick her up. Ok…decision made.<br />
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Did your brain go on vacation?!? What about the Tobii?? Hello!!! You already started working on that and it is going to take some serious moolah to make happen. Don't you want to give Rae a chance to learn how to tell you that her tummy hurts or that she's hungry? Surely you want her to be able to say, "I love you." Giving her a way to communicate with the world, shouldn't that be your primary focus? Alright, we're going to focus our efforts on obtaining a Tobii for Rae.<br />
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<b><span style="color: #f6b26b;">You need to simmer down now…</span></b><br />
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We're still waiting to hear from Boston about that clinical trial which would <b><span style="color: #f6b26b;">REQUIRE</span></b> you to travel to Boston. Maybe waiting to hear from them before making any decision would be best. Don't forget about the Natural History Study that you said you would like to participate in is in it's final year and those trips are going to cost some bucks too.<br />
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Hello, McFly?!? What about being prepared for a rainy day? Isn't that something you should be concerned with too? You have plenty of rainy days as it is and you know that probably isn't going to get any better so you might want to try to squirrel away some cash for an emergency.<br />
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<b><span style="color: #f6b26b; font-size: large;">AARRRGGGGHHHHH!!!!!!!!!!</span></b></div>
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I am losing my mind! Everyday these various projects plaque me to no end. What's worse is that these are just some of the bigger ones! I have dozens of little ones that nip at my heals as well and it is enough to drive anyone mad (<i><span style="color: purple;">both the lunatic and Hulk versions, "Candi SMASH!!!"</span></i>). By the way, my name is Candice. I'm done writing under another name. Most of you know who I am and some of my newer friends get a bit confused by my pseudonym.</div>
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I can't seem to get a grip on where to focus my efforts next. Technically, I don't <b><span style="color: #f6b26b;">NEED</span></b> to make this decision right now, but having some sort of "plan" makes me feel more secure. On the flip side, I have also learned the very cruel lesson that having a <a href="http://hypotonicworld.blogspot.com/2012/04/plan.html">"plan"</a> doesn't mean it will unfold the way you'd like. I fancy myself a contortionist. But, in actuality, I'm not as flexible as I'd like people to believe and what little flexibility I have left is quickly turning into something akin to crippling arthritis. I am becoming frozen. Afraid to leap (<i><span style="color: purple;">more like take a baby step</span></i>). Terrified of making the wrong decision and using the finite resources we have at our disposal in on the wrong "to-do."</div>
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This makes living in my own headspace very cramped. As much as I believe I don't want to cross a bridge when we get to it…I just can't. I keep mulling these "to-do's" around over and over to the point I can't really enjoy the goals and objectives we've already conquered. I'm already thinking about the next item on the agenda and how to make it happen. It's a very frustrating way to live. I can't keep this mental monster in check at all times, but I try.</div>
RettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.com6