tag:blogger.com,1999:blog-85570724956962730912024-02-20T20:16:43.457-05:00Rebekah Faith - Redefining 'Incompatible With Life' - Living with Trisomy 18Loving Life With Full Trisomy 18 - Edwards Syndrome - Helping Families with Prenatal and Postnatal Diagnosis of Trisomy 18, 13, and Related Chromosome Disorders - Dealing with Ethics, Genetics, and Related Medical and Health IssuesAnonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.comBlogger122125tag:blogger.com,1999:blog-8557072495696273091.post-39418635398670824392014-07-03T13:43:00.001-04:002014-07-03T13:43:58.874-04:00The Relationship Between Hot Weather and GI Issues<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">Rebekah was out in the heat all day yesterday. She has issues controlling her body temperature, so we did our best to keep her shaded and cool. She never got sweaty, but by the end of the day, I could tell she wasn't feeling her best and her digestion slowed down greatly. She was getting a very bloated and hard stomach and it was taking a long time for her stomach to empty. We also had to treat her for constipation because she hadn't pooped in several days and this should not be an issue with a very short large intestine. All of this made me reflect back on her major bowel obstructions which almost all have taken place after prolonged heat exposure. In fact, I think all GI hospitalizations have been during the summer!</p>
<p style="margin: 0px; font-size: 12px; font-family: Helvetica; min-height: 15px;"><br></p>
<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">I started to research how temperature/climate can affect digestion and I found several Chinese medicine sites that state that stress is the number one issue contributing to GI issues which, in turn, dictates your overall health. Stress can be mental, which is what most of us think about. But it is also physiological. And my thoughts are that the physiological stress of managing body temperature greatly affects Rebekah's GI health. </p>
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<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">From one of the pages, I read the following:</p>
<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">"Most people do not realise the effect of weather, humidity and temperature on their digestive system. Sudden changes to external temperature affects your circulation, nervous system and also your digestion. Living or working in cold, draughty conditions can weaken digestion, hot weather can cause bloating and water retention. It is important that anyone sufferring from digestive health problems should try to stay warm and dress appropriately for the weather."</p>
<p style="margin: 0px; font-size: 12px; font-family: Helvetica; min-height: 15px;"><br></p>
<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">I also found this Huffington Post article about a medical study on the relationship between climate GI health. It states that prolonged heat exposure over days definitely affects GI problems and sends more people to the hospital with IBD flareups and infectious gastroenteritis. (IBD includes Crohn's Disease, Ulceratice Colotis, and other related autoimmune disorders.)</p>
<p style="margin: 0px; font-size: 12px; font-family: Helvetica; min-height: 15px;"><br></p>
<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">http://m.huffpost.com/us/entry/3749116/</p>
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<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">I think with so many trisomy 18 kids having some sort of ongoing GI issues, and many having temperature regulation issues and/or being negatively affected by heat exposure, we ought to be able to come up with a protocol for managing our kids when exposure to heat is necessary. I wonder what things we can do to better prepare our kids before going in the heat, to help decrease the stress of being in the heat, and how to adjust feeds and fluid intake to improve motility issues arising from heat exposure. </p>
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<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">If your child has these issues too, or you have any thoughts on the subject, please let me know. </p>
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<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">#Trisomy18 #IBD</p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;"></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXWcIYFz2CY3D0v1akqhaT7UzoU_w-AAGykRDRrJLlUs0Bqs4REJvAcSs0rCB5ecy_yDqcNGhD0ntQ6jvTY3s1gW7AymHahrn522EjbO7lkRCzlneJYhwzJrl9P4yFHjL1-PXmDFM1ttaL/s640/blogger-image-2008224031.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXWcIYFz2CY3D0v1akqhaT7UzoU_w-AAGykRDRrJLlUs0Bqs4REJvAcSs0rCB5ecy_yDqcNGhD0ntQ6jvTY3s1gW7AymHahrn522EjbO7lkRCzlneJYhwzJrl9P4yFHjL1-PXmDFM1ttaL/s640/blogger-image-2008224031.jpg"></a></div><br><p></p><div><br></div>Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-17561149090043606712013-08-10T11:07:00.000-04:002013-08-10T11:37:05.124-04:00A Lazy Saturday Morning...<span style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">I have a trisomy friend, Kara, whose T13 son's story has gone viral on YouTube and the Team Corbin facebook page has over 23k likes! He is in the hospital and had bowel surgery yesterday where a foot of dead intestines was removed. Before the surgery, they were given an opportunity to stop Corbin's journey. For children like Corbin, Rebekah, and others who are deemed chronically ill, incompatible with life, etc, there will always be a group of people who think we are going too far...torturing our kids as we push them through surgeries and medical procedures, and haul them from doctor appt to doctor appt. Kara posted a very heartfelt explanation:</span><div><font face=".Helvetica NeueUI"><span style="font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469);"><br></span></font><div style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">"Many have asked, how far are we willing to go? The surgeon told me this morning, you do have the option to stop right here right now. My response was simple, "That's not an option." Many ask why? Some have opinions and wonder when enough is enough, well I'll tell you. Until you have a child that's sick, who fights every day to thrive, until you take every moment with grace, and I mean LITERALLY every moment. The second you get excited when your child sees the outside world. The second you are grateful to dress your child and the second you are grateful for every OUNCE your child gains; then you'd understand. Those kids, my kid, they fight for their life! They have no voice so we advocate. I advocate for my son what I think he can handle and my mommy instincts haven't failed me yet. I look into my sons eyes and I know. I know he isn't done. So that folks, is why we fight and why we aren't done yet.</div><div style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">I want Corbin to experience life! Life outside this hospital, life with no nurses poking him every day, no doctors waking him every morning. And I know with every chance we give him he's one step closer to THAT life."</div><div style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); "><br></div><div style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">Kara's words reminded me of the many times we've had some moments in Rebekah's life where we thought we might lose her, and the moments when we had to make decisions to give up or move ahead. And we would turn to Rebekah, and SHE would let us know it is not time to give up, and God's grace would get us through it. </div><div style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); "><br></div><div style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">I can often see the look of incomprehension or disdain on people's faces when they see Rebekah's battle scars or even when they meet her for the first time and all they can see is a severely "mentally retarded" child who must be a burden to her family. But if you took a moment to step outside of your world and into our world, you would see that this journey makes us stronger, it brings us closer to God... There is something defining about the grace and strength you can receive even when feeling deflated and broken. There is always a sense of God's presence watching over us - holding us in our darkest moment and rejoicing in the bright moments. </div><div style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); "><br></div><div style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">I almost feel as if I am asleep as of late because life is a little surreal and somewhat normal. But Kara's post about Corbin woke me up. This picture below, this seemingly normal scene of 5 kids lazily watching TV from their family room couch, is much more than just a photo of kids watching TV. It is a picture of why we do what we do!! This is one of the dreams that all parents of children with life threatening disorders have - that their child will get to experience and participate in life right along with the rest of us, even something as simple as sitting around on a lazy Saturday morning. And if you pause for just a second and think about where we came from and where we are today, you might begin to understand what drives us to not give up on these kids!</div><div style="font-family: '.Helvetica NeueUI'; font-size: 17px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); "><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL65CAIKfOcDTPpjez7kz0qaEF84g-Ga-sRGf0jlLDaga0cPqAvmnwOI2VnR7-J7FKxVYLaMiWrrhMUIQ17CFQSTXaA-H1k9Tj5oK30dsi5p55cH2tuL7J_F-fw14nEz_73pGpVVxJlyD_/I/photo_89822.jpg" border="0" class="bloggoimg"></div><br><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMqxrtMhGxun0N-WR9rn1Dq39ecQHRKhACkeEhao-V2i4y1wuKEhVIRY49sa2Jxb57OQyKoy9dCBbK8PZLleHZixCmkas8CtiVcaz0orRaBbtaIqLi7mGAbMbxZhsJMAc8g-WxMKDG8Bzn/I/photo_212063.jpg" border="0" class="bloggoimg"></div><br><br> <br> <br></div><div><br></div></div>Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com1tag:blogger.com,1999:blog-8557072495696273091.post-31839853853318279862013-07-31T22:16:00.003-04:002013-08-18T19:22:43.219-04:00Coconut Oil for Trisomy Kids - Increased Babbling and Concentration?! You bet!<i>Updated 8/18/13 to add info regarding coconut intolerance/allergies.</i><br />
<br />
At four years old, the only thing Rebekah verbalized was the same "ahhhhhh, ahhhhhh" noise she has made since she was little. We have spent a lot of time trying to get her to make different sounds and move her mouth in different ways. We do lots of oral stimulation and she loves to watch our mouths when we talk and will even touch our lips. But I had lost hope that she would say anything more than "ahhhh" because years of effort have not produced any different sounds. And we do work with her in this area daily!<br />
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So on my <a href="https://www.facebook.com/groups/T18Mommies/" target="_blank">Trisomy 18 Mommies Facebook Group</a> (which is for all rare trisomy parents, not just T18), a T13 mom was discussing her daughter's care and mentioned that she gives her 3-4 half teaspoons of coconut oil per day and she said "mama" after several weeks of coconut oil. She went on to say that the verbalization became more frequent and meaningful after adding in <a href="https://www.craniosacraltherapy.org/Whatis.htm" target="_blank">cranial sacral therapy</a>. We already do periodic cranial sacral therapy for Rebekah (which I LOVE and highly recommend!! It helped early on tremendously!), so I was very interested in the coconut oil.<br />
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I researched it online and found some very interesting links. Most are related to the use of coconut oil for Alzheimer's patients. No, Rebekah doesn't have Alzheimer's. But... the premise is that Alzheimer patients have brains that have problems getting "fuel" and the brain degenerates. Dr. Mary Newport looked into providing her husband, suffering from Alzheimer's disease, an MCT fuel that would bring about a mild state of ketosis and allow the brain to process the "fuel" and function better. If you read her work, you'll get into a whole bunch of scientific information about MCT fat (medium-chain triglycerides) and ketones which I won't get into. But... if you read enough of it and know enough kids in the trisomy community, many kids with severe epilepsy have benefited from a <a href="http://en.wikipedia.org/wiki/Ketogenic_diet" target="_blank">Ketogenic diet</a> which has to do with ketosis, MCT fats, and changes in brain function as a result. So this is all enough "evidence" for me to give it a try! There isn't really anyway I can harm my daughter by trying coconut oil, other than maybe adding a few pounds. And coconut oil has been used for centuries because of its medicinal value. :-)<br />
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<ul>
<li><a href="http://www.tampabay.com/news/aging/doctor-says-an-oil-lessened-alzheimers-effects-on-her-husband/879333" target="_blank">Dr. Mary Newport's initial story about using coconut oil on her husband who has Alzheimer's disease</a>.</li>
<li><a href="http://www.tampabay.com/news/health/spring-hill-couple-inspires-research-into-coconut-oil-for-alzheimers/2124596" target="_blank">Update on the Newports 5 years after using coconut oil.</a></li>
<li><a href="http://www.coconutketones.com/" target="_blank">Mary's website</a> - Scientific references, articles, testimonials, and more. Per the website, studies are beginning on people with mild cognitive impairment and also on the use of ketones as alternative fuel for other conditions such as cancer, ALS, wound healing, oxygen toxicity, and epilepsy. Exciting stuff!</li>
<li><a href="http://coconutoil.com/">coconutoil.com</a> - research and news on the health benefits of coconut oil. Includes references to the use of coconut oil and ketogenic diets for autism. (<a href="http://coconutoil.com/tag/autism/">http://coconutoil.com/tag/autism/</a>)</li>
<li><a href="http://coconutketones.blogspot.com/" target="_blank">Coconut Oil, Ketones, and Alzheimer's</a> - Mary's blog</li>
</ul>
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Now I cannot provide any links to using coconut oil for speech. There are several supplements out there that are supposed to be good for speech development including Fish Oil and a supplement called <a href="http://www.speechnutrients.com/products/speak/" target="_blank">Speak</a>. But we had issues trying fish oil with Rebekah. She gets a suggested daily amount, but doesn't seem to tolerate the larger quantity prescribed for "speech" and cognitive improvement. What I can offer is <b>anecdotal/parent experiential info</b>. About a month after taking 1 tsp of coconut oil per day, Rebekah started verbalizing more sounds. In the same week, she began saying "dadadadada", "gagagagaga", "bababababa", and "mamamama". She is also experimenting more with sound influctions and her concentration/trainable time has increased a lot. She is more alert, and more interactive. Other people have recognized the change over a short period of time. Coincidence? Maybe. But other trisomy parents are reporting similar experiences. While not scientific, parent experiential data goes a long way to creating the bases necessary to encourage research on a given topic. So far, I haven't heard of anyone complaining of side effects or negative reactions to adding coconut oil.<br />
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<a href="http://www.superherbalfoods.com/facebook-posts/posted/coconut-oil.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://www.superherbalfoods.com/facebook-posts/posted/coconut-oil.jpg" width="316" /></a></div>
<h3>
What We Use: </h3>
<a href="http://s2.hubimg.com/u/2192941_f520.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://s2.hubimg.com/u/2192941_f520.jpg" width="200" /></a><a href="http://www.vitaminshoppe.com/images/catalog/skus/l_vs-2521.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://www.vitaminshoppe.com/images/catalog/skus/l_vs-2521.png" width="142" /></a>We use organic virgin coconut oil. Some are labeled extra virgin. There really isn't a difference (like there is with olive oil). Virgin coconut oil can be cold (expeller) pressed, or wet-milled. Both use no heat and no chemicals. Do not buy the cheap coconut oil you find in grocery stores that is "refined". The refining process uses harsh chemical process to deoderize the oil so that it doesn't taste and smell like coconuts. This process also reduces antioxidants per serving. Wet-milled would probably be the best type to purchase, but it can pretty much only be found online. I purchase cold-pressed oil locally and I am currently using the Vitamin Shoppe's organic virgin olive oil. I have heard that you can purchase a good size container, reasonably priced, of Nutiva at Costco and Sam's Club. It is also an organic, virgin, cold-pressed coconut oil. I am not a brand-snob. I am sure there are many other good brands out there as long as it is organic, virgin, and unrefined.<br />
<h3>
Dosage:</h3>
An adult dose referred to in the articles for Alzheimer's patients is 40 ml or 2.7 T. Rebekah weighed 26 pounds when we started. I used a conservative dose of 1 tsp per day. I am currently working up to 2 tsp per day, but we do not do this consistently as she has gained three pounds over the course of 3 months and the extra calories are probably the culprit. Ironically, coconut oil is supposed to help with weight loss (and memory!), so I may be trying to incorporate it into my own diet!<br />
<h3>
Our Process of Delivery for G-tube Button:</h3>
Rebekah has a mini-one button g-tube and we can use monoject 6ml syringes right into her button. I administer 1 t of coconut oil via Rebekah's gtube with a water bolus in the evening. I do it separate from medicines and feed. The second dose is given in the morning, also separate from feeds and meds. I plan on eventually blenderizing Rebekah's food and will probably incorporate some of the fat into her feeding at that time when I get the okay from a nutritionist.<br />
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<b>Coconut oil is solid at room temperature!</b> It becomes a liquid at about 75+ degrees. In order to get the oil into syringes, I scoop it into a small glass and place it inside a bowel of hot water (not getting the water into the glass with oil). After a few minutes, I stir and it is usually liquified. Use hotter water if it isn't melting. Do not microwave or use boiling water as coconut oil doesn't withstand high heat and you do not want to break the oil down and reduce the antioxidant benefits. I draw it up into syringes for the week in 5 ml (1 t) amounts. Each time I want to administer the oil to Rebekah, I simply set the syringe in a cup of hot water for a few minutes, put it into the g-tube, then flush with at least 30 cc (1 oz) of water. I flush with a plunger on the syringe to make sure there is enough pressure to wash the oil down. <br />
<i>It is very important to liquefy the oil and flush well or <u>YOU WILL CLOG THE G-TUBE</u>!! If things slow down, try giving an ounce or two of pepsi or coke to break down the clog. Properly preparing the oil and flushing immediately after delivery should prevent buildup in the gtube button mechanism.</i><br />
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Hopefully this information is useful to some families. If so, I would be grateful if you would please post a comment, share my blog, and "like" <a href="https://www.facebook.com/rebekah.budd" target="_blank">Rebekah's Facebook page</a>. If you pursue using coconut oil for your trisomy child, please join us on the T18 Mommies Facebook group and tell us your experiences! We have several medical professionals on our group and would love to eventually have a medical paper written on the use of coconut oil in our kids. Also, if we continue to see positive responses, <a href="http://www.hopefortrisomy.org/" target="_blank">Hope for Trisomy</a> will eventually add all of this information into a <a href="https://www.facebook.com/media/set/?set=a.378219712278139.1073741828.187729741327138&type=3" target="_blank">H.O.P.E. (Helping Others through Personal Experiences) Database</a> that will be designed to encourage medical research based on parent experiential data.<br />
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<div style="text-align: justify;">
<span style="background-color: yellow; font-family: Verdana, sans-serif;"><b><i>Please remember, this blog is not meant as medical advice. If you choose to make any dietary changes to your child's diet as a result of this information, PLEASE discuss all changes with a doctor/nutritionist first! Adding supplements (such as Speak) when supplements are already being given can result in vitamin toxicity. Adding fat calories </i></b><b><i>and certain supplements can disrupt absorption of certain vitamins and minerals. Adding fat calories can disrupt the balance of a nutritiously balanced plan </i></b><b><i>(1 tsp of fat = 40 calories and for a child on a small volume diet, an extra 40 calories of fat is significant). </i></b></span></div>
<div style="text-align: justify;">
<span style="background-color: yellow; font-family: Verdana, sans-serif;"><b><i>It is important to know and recognize the signs of a coconut allergy. Coconuts are considered a "nut", so anyone with a tree nut allergy should procede with caution. Less severe is a coconut intolerance. <a href="http://www.hemocode.com/wiki/Coconut-intolerance" target="_blank">Click here for signs and symptoms of intolerance</a></i></b></span></div>
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Other useful links on brain-development for your intellectually disabled child:<br />
<br />
<ul>
<li><a href="http://www.nutritionexpress.com/article+index/authors/yousry+naguib+phd/showarticle.aspx?articleid=1629" target="_blank">20 Brain Boosters for Better Cognitive Health</a> - Fish Oil (Omega 3's), Lecithin, ALC, ALA, Ginkgo Biloba, Magnesium L-Threonate, Vitamin E, etc.</li>
<li><a href="http://prn.fm/2013/04/08/mct-fats-found-in-coconut-oil-boost-brain-function-in-only-one-dose/#axzz2aeyDSTdL" target="_blank">Single Dose of Coconut Oil Boosts Brain Function</a> - Specifies an adult dose and summarizes a medical study of 20 patients. </li>
<li><a href="http://www.amazon.com/dp/0757001866" target="_blank">What to Do About Your Brain-Injured Child</a></li>
<li><a href="http://www.setbc.org/Download/LearningCentre/Curriculum/Moderate_Profound_Intellectual_Disabilities_Resource_List.pdf" target="_blank">Moderate to Profound Intellectual Disabilities – Resources List</a></li>
<li><a href="http://nacd.org/" target="_blank">National Association for Child Development</a> (Bob Doman)</li>
<li><a href="https://iahp.org/" target="_blank">The Institutes for the Achievement of Human Potential</a> (Glenn Doman)</li>
<li><a href="http://www.amazon.com/gp/product/0399537368/" target="_blank">Kids Beyond Limits: The Anat Baniel Method for Awakening the Brain and Transforming the Life of Your Child With Special Needs</a></li>
</ul>
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<b>8/18/13 Update:</b></div>
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<b>In addition to coconut oil, coconut milk can be added to the diet. This is more palatable for oral eaters. But it takes a lot more coconut milk to get enough of the coconut oil fats for the desired serving. I have no recommendation on quantity, check with your nutritionist.</b></div>
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<b>Some people have coconut allergies and intolerances, especially if there is a known tree nut allergy. If digestive issues get worse, stools contain white areas or become colorless (due to going through the digestive tract too fast and lack of bile/absorption issues), etc., then stop using the coconut oil/milk immediately. Spreading out the oil or milk across multiple servings might help if it increases motility a little too much. Also, it looks like some celiacs are allergic to coconuts too. Here is a great summary on coconut intolerance. <a class="_553k" href="http://www.hemocode.com/wiki/Coconut-intolerance" rel="nofollow" style="color: #3b5998; cursor: pointer; font-size: 13.333333969116211px; line-height: 18.88888931274414px; text-decoration: none;" target="_blank">http://www.hemocode.com/wiki/Coconut-intolerance</a></b><br />
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buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com4tag:blogger.com,1999:blog-8557072495696273091.post-14215975756983389142013-07-30T09:35:00.000-04:002013-07-30T21:18:50.044-04:00It's a bird! It's a plane! It's TinySuperhero Rebekah!!<div>
<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I can not even begin to formulate the words for the amount of <b>love </b>and <b>admiration </b>I have for my daughter Rebekah. From my pregnancy, to her first day on earth, to 6 weeks old when she was trached, to all her hospitalizations, and through each of her health challenges...there has never been any doubt that this little fighter was sent on earth to share a message of <b>hope </b>and <b>faith</b>. She has been a <b>warrior </b>through it all. There is no doubt in my mind that Rebekah is a <b>Tiny Superhero</b>! And we received her official TinySuperheroes cape to prove it! </span></span></div>
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<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Rebekah looked ready to take off and continue her official job changing hearts and proving she is more than an "incompatible with life" label! </span></span></div>
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<img border="2" class="bloggoimg" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgChWI1Sjc9eacqSYBqQxGo8JWqmLMS3kZ8njFXSyfp5ZRk9tuAL5-kwD60v_3lwIYeLGa9LPfrgy2QeQOnEVq8h05uur5WQHhYScuC02rqhX-9NDTRziPYcH1eWALv0HK0RmlNxfP30CPw/I/photo_937409.jpg" style="font-family: Times; text-align: center;" width="301" /></div>
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<span style="font-family: Times;">From </span><a href="http://tinysuperheroes.com/" style="font-family: Times;">TinySuperheroes.com</a><span style="font-family: Times;">:</span></div>
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<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><i>TinySuperheroes seeks to empower Extraordinary kids — one cape at a time. We donate capes to Extraordinary TinySuperheroes who exemplify strength and determination as they overcome illness or disability. Once these Extraordinary TinySuperheroes are comfortable in their new capes, we feature them on our blog, in hopes of giving them a voice, their illness or disability a face, and the world the opportunity to stretch.</i></span></span></div>
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<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">What an amazing way to inspire others and bring a little hope and fun into the life of a child facing great challenges! A huge THANK YOU to Robyn for creating this program for all the TinySuperheroes out there! Please consider supporting their efforts!</span></span></div>
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<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="2" class="bloggoimg" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSN1aroir6aNZjo43iOjhvhDlkx9t5uAt-otKW1wIhdabki7Wk08FDABd4p9eRK3apCksC8zDl23UmqMkHEUlYr-cY33yLgpvbvyDv4bvnuoHZhQn6zHLGl58ueUHC0vGy-aLopYAS13GU/I/photo_346097.jpg" /></span></span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); text-align: center;"><span style="font-family: Times;">I have to brag on Robyn for a moment about the quality of her capes too. It is obvious that love and care go into the making of each personalized cape! I was expecting just a little cape, but this one can make anyone fly! It was soft, and thick, and beautiful! Even the inside of the cape is designed. </span></span></div>
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<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="2" class="bloggoimg" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLPWjmXv5rbtQtEiT26nHGKFZ-tEHW96Unm44NOoKs4Ipo_YEU5xZQB3MeUn_fqztRiQJJh6UOdTCrVqFuB-q3ddKptZB2aY4aAGLLMV7YEweXqSW-GP1Cr3NnJ_PGmAawzs4oDbM8PGLY/I/photo_689781.jpg" /> </span></span></div>
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<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It even came with a personalized message just for Rebekah!</span></span></div>
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<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I think Robyn deserves her own superhero cape for all of her efforts! For more information on Tiny Superheroes, please visit their <a href="http://tinysuperheroes.com/">website</a> or <a href="https://www.facebook.com/TinySuperheroes">Facebook page</a>. </span></span></div>
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<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br /></span></span><span style="font-family: Times;">Rebekah has always been our hero, but now she can wear her official cape and show the world what we've known all along. Rebekah can also now be a TinySuperhero ambassador for Trisomy 18 Awareness! Yay!</span><br />
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<span style="font-family: Times;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Thank you TinySuperheroes for making a difference!<br /> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7O0DR_2nM-JZtKl3NUw6ytiDED7XpG1EHYIDOj0zUrUbKIFRhwOWePmRl-eDUTv2zh35t_4yStJFnv2ZaZEMPP396m4K7umERjXHkMnXhyyEQa9N392lSUxCmRmiTSZXoj6YyFxcM7vfC/s1600/IMG_3556.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="2" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7O0DR_2nM-JZtKl3NUw6ytiDED7XpG1EHYIDOj0zUrUbKIFRhwOWePmRl-eDUTv2zh35t_4yStJFnv2ZaZEMPP396m4K7umERjXHkMnXhyyEQa9N392lSUxCmRmiTSZXoj6YyFxcM7vfC/s400/IMG_3556.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebekah Faith - Our TinySuperhero for Trisomy 18 Awareness!</td></tr>
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Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com3tag:blogger.com,1999:blog-8557072495696273091.post-17955302299386765012013-06-14T11:08:00.001-04:002013-06-14T11:47:56.377-04:00An Unexpected Casting Visit<div><font size="4">We made an unexpected trip to Shriner's hospital today. Yesterday we noticed Rebekah's casts were so loose in the thighs that we could fit our entire hand into into and down to her knee! Her left foot had actually shifted quite a bit and the right foot was in danger of the same thing. </font></div><div><font size="4"><br></font></div><div><font size="4">The doctor decided to remove the old casts and recast her in the long leg casts for the last 2 1/2 weeks until she is scheduled for the pin removal. Rebekah managed like a champ and wasn't in any pain or discomfort. Her new casts should stay secure the last few weeks. Best thing - her feet looked really good! Although we have 2 1/2 more weeks in long casts then a few weeks in short casts, Rebekah should be able to wear shoes and have then stay on her feet! Can't wait until the casts are completely off and we can bathe her poor dry, scalely legs and wear some cute shoes!</font></div><div><br></div><div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5IYT28gwCr4ZfYy6W0hKyZufPXtjgag9d1zawVNWfyw1JC3CMBPRZdd4-92ljFhryJMNiUSnMmvENJfQrAm4rQqpaDRnFcpVnbiY8r2SSlX_gA6cNrSr1hQon7Ep7nDefyw0ObAQ701Nz/I/photo_764894.jpg" border="0" class="bloggoimg"></div><div style="text-align: center;">Pre-surgery feet. I don't have a very good photo of her rocker bottom heels, but you can see them to some extent here. Shoes always would fall off her feet and the right one turns off to the right also. </div></div><div><br></div><div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr8MiGm8cYg9gmSbI94UMFtdkabUwcIF-bnPviCLozIKVUj4dgnbECDBQuOCLQt-U-n8A6481z2U_7hwACb6gftDDw1F3-nWs_6WMmwy_oEarXoClbDhhZrdNDHntL2Opp99JJpjBP7CI-/I/photo_939624.jpg" border="0" class="bloggoimg"></div><div style="text-align: center;">Getting the casts cut off.</div><div><br></div><div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO_k-t1Zs881WLVxTBBtu0ZC9M2fagvIahYZ6MXR_NQG9Fmg9aYlbq7MEmsXGhNcw5YhXVhUJHFvjQ_zHPBvMuUh6jrdwAtRZ3ZlZrQiyg7kDpRL3f6h6s7S73X77A0LDvgu7fCECPeRK4/I/photo_46542.jpg" border="0" class="bloggoimg"></div><div style="text-align: center;">You can see how far back Rebekah's toes are. The cast was beginning to slide off. </div><div><br></div><div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV6jxhMkoKu6iC1RochGV3_l0p-mJ1aTxVALv0g4kfvPI4Yw7j72jT8fqhxlEVfCmzPgFsaWzM4t2ljcM9783UvaYIwT4_sSPKRbwCoanvvIjCykSBmqSv6kauYlvRAPYJz-Dm9qKqY3Q5/I/photo_204191.jpg" border="0" class="bloggoimg"></div><div style="text-align: center;">Here are the 2 pins still in Rebekah's right foot. You can see the much better alignment of the heel.</div><div><br></div><div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoIW1CWYfkOhHcMHyLoUl-BIhofPBzM4sMyakQMDhUI3dlxAYQ97Q8vCRd64iLXogp5QWj6WNP8kvb8zWS4H-P_JYAQTeoSvtCILEvx4AVhHnSBhhTZ1UndTeHHo2L_abclFoT9PPdUpOf/I/photo_44389.jpg" border="0" class="bloggoimg"></div><div style="text-align: center;">Another view from the outside of the right foot.</div><div><br></div><div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKV59HM2_iZaZ9akSlRmzD_84tHfBxst6tgnnNVLvBP_nLeg-xRZfdLGveAnPl414dlb9MdDxTyt72UZd3NqRfCYGykE4O10-vis43f2VnXiHYz3Qvog-4jE21h8pigOzRKhOWouca9LuH/I/photo_837158.jpg" border="0" class="bloggoimg"></div><div style="text-align: center;">Left foot looks great!</div><div><br></div><div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFvhPcdKj5zoZUwyi91Si3t7KzzISsgAC1nPk8UHYNs70hkc9YaEkPlBpRsLfaWC2uyjd1Se5skoU_WpsQuqy0kkIuKyGQbZlKOoxEGUGgfUP9Pac2KeDrmWVM60Y7ZwOq327QCPR4_Ip0/I/photo_549843.jpg" border="0" class="bloggoimg"></div><div style="text-align: center;">New casts for 2 1/2 weeks, then we take them off again to remove the pins. </div></div></div></div></div><br> <br></div><br><br> <br></div>Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com1tag:blogger.com,1999:blog-8557072495696273091.post-36073302796163846842013-06-11T21:36:00.002-04:002013-06-11T22:16:54.918-04:00Team Budd Zoo<div style="background-color: white; border: 0px; font-family: sans-serif; font-size: 13px; line-height: 16px; outline: 0px; padding: 5px 12.6875px; vertical-align: baseline;">
<span style="background-color: transparent; border: 0px; font-family: inherit; font-size: small; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: transparent; border: 0px; font-family: Verdana; font-size: 16px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><br /><span style="color: #444444;">Please consider supporting </span></span></span><b style="font-family: Verdana; font-size: 16px;"><span style="color: purple;">Team Budd Zoo</span></b><span style="color: #444444; font-family: Verdana; font-size: 16px;"> </span><span style="background-color: transparent; color: #444444; font-family: Verdana; font-size: 16px; font-style: inherit;">in our efforts to raise money for </span><span style="background-color: transparent; border: 0px; color: red; font-family: inherit; font-size: 16px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><strong style="background-color: transparent; border: 0px; outline: 0px; vertical-align: baseline;">SOFT (Support Organization for Trisomy 18, 13 and Related Disorders)</strong></span><span style="background-color: transparent; color: #444444; font-family: Verdana; font-size: 16px; font-style: inherit;"> through their </span><b style="background-color: transparent; color: #444444; font-family: Verdana; font-size: 16px; font-style: inherit;">Stroll for Hope</b><span style="background-color: transparent; color: #444444; font-family: Verdana; font-size: 16px; font-style: inherit;"> event. </span></div>
<div style="background-color: white; border: 0px; color: #444444; font-family: sans-serif; font-size: 13px; line-height: 16px; outline: 0px; padding: 5px 12.6875px; vertical-align: baseline;">
<span style="background-color: transparent; border: 0px; font-family: inherit; font-size: small; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: transparent; border: 0px; font-family: Verdana; font-size: 16px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">We will be "strolling" in the 3rd Annual <b>Stroll for Hope </b>on Thu, July 18th at this year's <b>SOFT conference</b> in Providence, RI. Funds raised go towards helping <b>SOFT </b>provide its resources and services to many families. <span style="border: 0px; font-family: inherit; font-style: inherit; line-height: 1.231; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"> </span><span style="background-color: transparent; border: 0px; font-family: inherit; font-style: inherit; line-height: 1.231; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">You can view some of those resources on their website: <a href="http://www.trisomy.org/" style="background-color: transparent; border: 0px; color: #607890; cursor: pointer; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;" target="mytarget">http://www.trisomy.org</a>. SOFT is a 501(c)(3) that has been supporting the trisomy community since 1980! No donation is too small!</span></span></span></div>
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<span style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="border: 0px; font-family: Verdana; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: yellow; border: 0px; font-family: inherit; font-style: inherit; line-height: 1.231; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><b><span style="font-size: large;"><span style="color: red;">==></span><span style="color: blue;"> <a href="http://www.firstgiving.com/fundraiser/buddzoo/providence" target="_blank">DONATE HERE</a></span><span style="color: blue;"> </span><span style="color: red;"><== </span><span style="color: #444444;"> </span></span></b></span></span></span></div>
<div style="background-color: white; border: 0px; color: #444444; font-family: sans-serif; font-size: 13px; line-height: 16px; outline: 0px; padding: 5px 12.6875px; vertical-align: baseline;">
<span style="background-color: transparent; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: transparent; border: 0px; font-family: inherit; font-size: small; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: transparent; border: 0px; font-family: Verdana; font-size: 16px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Donating through the firstgiving.com website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.</span></span></span><span style="background-color: transparent; border: 0px; font-family: inherit; font-size: small; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: transparent; border: 0px; font-family: Verdana; font-size: 16px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><br /><br />Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!</span></span></div>
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<span style="background-color: transparent; border: 0px; font-family: inherit; font-size: small; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: transparent; border: 0px; font-family: Verdana; font-size: 16px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><br /></span></span></div>
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<span style="background-color: transparent; border: 0px; font-family: inherit; font-size: large; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: transparent; border: 0px; font-family: Verdana; font-size: 24px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><span style="background-color: transparent; border: 0px; color: purple; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><strong style="background-color: transparent; border: 0px; outline: 0px; vertical-align: baseline;">THANK YOU from Team Budd Zoo!</strong></span></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsJ-YQYknW7TFNBzgmlDHolR0t7JDCzEPdxJNoNOwmu6HhLIeuoDCNnUYIOQX_KF_gxHxyVi_8FYRPCJMqYPfslmAEe83R6oO0y-jot4IWgCYTN7eF20P9FOeWL1Tx0Cjbu5DwUPYL-erQ/s1600/110721+SOFT+Conference+(5).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsJ-YQYknW7TFNBzgmlDHolR0t7JDCzEPdxJNoNOwmu6HhLIeuoDCNnUYIOQX_KF_gxHxyVi_8FYRPCJMqYPfslmAEe83R6oO0y-jot4IWgCYTN7eF20P9FOeWL1Tx0Cjbu5DwUPYL-erQ/s320/110721+SOFT+Conference+(5).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team Budd Zoo - 2011 Stroll for Hope - Chicago, IL</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3qMYy9_YIU_BIyAH35Y-ehdEYFu4oLRSKi9JkoYkr_tUBAEYsP7jvTTKWhz-DVLtH2Xb2gyldgTPa0wkignG5HVv-XUyXF8BuJUm-1LtgbeRxUcRmYRbHhcaIRK4ysb0kdOMdItNV_Rv7/s1600/120719+SOFT+Conference+St+Louis+(8).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3qMYy9_YIU_BIyAH35Y-ehdEYFu4oLRSKi9JkoYkr_tUBAEYsP7jvTTKWhz-DVLtH2Xb2gyldgTPa0wkignG5HVv-XUyXF8BuJUm-1LtgbeRxUcRmYRbHhcaIRK4ysb0kdOMdItNV_Rv7/s320/120719+SOFT+Conference+St+Louis+(8).JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team Budd Zoo - 2012 Stroll for Hope - St. Louis, IL</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6stnDW6BbSEKWUdUFHymMWS3gjWA3-5jc4SlD1rC0aCIkxq0YPJQ85LiKaTWFvVsNi0si1UXWlDr1ZFJGJusuJhHzi3W21iFPyk4HY93-0II5Zv64kMtw0LxeuXv2pZMWVOg3yWbO2Ymf/s1600/120719+SOFT+Conference+St+Louis+(2).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6stnDW6BbSEKWUdUFHymMWS3gjWA3-5jc4SlD1rC0aCIkxq0YPJQ85LiKaTWFvVsNi0si1UXWlDr1ZFJGJusuJhHzi3W21iFPyk4HY93-0II5Zv64kMtw0LxeuXv2pZMWVOg3yWbO2Ymf/s320/120719+SOFT+Conference+St+Louis+(2).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of the 2012 trisomy stroll participants</td></tr>
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buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-17188206700730374512013-06-10T17:52:00.001-04:002013-06-10T17:52:32.589-04:00Foot Surgery - Finally!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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Some of you may recall that we have been trying to pursue foot surgery for Rebekah for some time. In fact, we were all set to travel back and forth to St. Louis last fall to have her feet casted and corrected for rocker bottom feet/vertical talus. However. Rebekah got a bowel obstruction last September and spent 2 weeks in the hospital. Although it resolved itself, we have been leery to travel so far for orthopedic services since she is likely to have another repeat bowel obstruction at some point.</div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijR3ZhAu9SOJNspoSBuml0O4CoyztR_Y3cQ1AJF9uu6O01N1pVUHVSrrhxHlUuMZJfiM0WzpDlD2lbwHfb1a_6tEjdGixDBdoG-Dhg3Kf2wm5_ju9Z6zHi_Q5TAYAqUg7A2kfA-TF-z3uv/s1600/120716+RFBs+Feet+(1).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijR3ZhAu9SOJNspoSBuml0O4CoyztR_Y3cQ1AJF9uu6O01N1pVUHVSrrhxHlUuMZJfiM0WzpDlD2lbwHfb1a_6tEjdGixDBdoG-Dhg3Kf2wm5_ju9Z6zHi_Q5TAYAqUg7A2kfA-TF-z3uv/s320/120716+RFBs+Feet+(1).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebekah's right foot bends outwards to the right. The toe bones all bend to the right. Her toes on both feet look small because they are all webbed from the first joint. Her feet are more than "flat", they are actually convex from an anomaly related to Trisomy 18 called <a href="http://en.wikipedia.org/wiki/Rocker_bottom_foot" target="_blank">Rocker Bottom feet</a>. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGP765KHUm62Q5ibZ5cJMY54vJVb88obyypjjSKHgYUbGBnUN4WWSEFMCLteN4h8NfvXi98MlQmPoI_88CGLyKCXypbNgfLDQ9fUsgt-WbK9T1pZNEKQm5USEfNSJzBmnpiEOmFXDWU69w/s1600/120716+RFBs+Feet+(7).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGP765KHUm62Q5ibZ5cJMY54vJVb88obyypjjSKHgYUbGBnUN4WWSEFMCLteN4h8NfvXi98MlQmPoI_88CGLyKCXypbNgfLDQ9fUsgt-WbK9T1pZNEKQm5USEfNSJzBmnpiEOmFXDWU69w/s320/120716+RFBs+Feet+(7).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another look at her feet from the bottom. you can see the outward curve of the right foot and the bony protrusion on the inside of that right foot. This is due to her talus bone in the foot appearing vertical and diagonal.</td></tr>
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Given Rebekah's genetic diagnosis, we have met many obstacles (doctors and support from others) in seeking to fix Rebekah's feet. In fact, there are many people who believe we would just be subjecting our child to unnecessary and senseless surgery and "pain and suffering" because we cannot "fix" trisomy and "everyone knows" she cannot (and will not ever) walk.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-hoW4l1N2Md4Z6BIwKDasr0bveQTclZgn9w6mEJQBbSc0q2Eshfn0JhB1ldHgrPzzOMBympFHschXNJqQAyni4MWLBTS-BlQjM7rXiWk13teP8AiMiLJNv7Gn8yKbbCAW4i0PtQa7HWO8/s1600/120711+RFB+Vertical+Talus+Feet+XRays+(2).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-hoW4l1N2Md4Z6BIwKDasr0bveQTclZgn9w6mEJQBbSc0q2Eshfn0JhB1ldHgrPzzOMBympFHschXNJqQAyni4MWLBTS-BlQjM7rXiWk13teP8AiMiLJNv7Gn8yKbbCAW4i0PtQa7HWO8/s320/120711+RFB+Vertical+Talus+Feet+XRays+(2).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You can see the prominence of the heel bone being pulled up. This is the sign of "rocker bottom feet" and results in her heel sticking way out. Shoes do not fit this girl! You can also see the convex action of the foot where it should be concave into an arch. This foot defect causes her weight to be distributed on the inside front right of her foot during weight bearing - a balancing act at best to maintain a standing position, let alone walk.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf0Umq6WaL3p2c4Xoh_rubMyHV9Im4CIeIMVOEmwa0vKBVR7njg2vYKx7uw8WysW6iA_4sXqx2r_x4bJyTaiJ-M2P9wt58XthW5NzEiWqGrCc9C8NO_S1_tWEFa0zSQl4pp8LCsdihrSzt/s1600/120711+RFB+Vertical+Talus+Feet+XRays+(1).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf0Umq6WaL3p2c4Xoh_rubMyHV9Im4CIeIMVOEmwa0vKBVR7njg2vYKx7uw8WysW6iA_4sXqx2r_x4bJyTaiJ-M2P9wt58XthW5NzEiWqGrCc9C8NO_S1_tWEFa0zSQl4pp8LCsdihrSzt/s320/120711+RFB+Vertical+Talus+Feet+XRays+(1).JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A shot of Rebekah's bones from the top of her foot. you can see how her right toe bones all curve outwards to the right. This anomaly will NOT be corrected with her surgery as this is bone work. If and when we address this, Rebekah will be much older.</td></tr>
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Well, Rebekah didn't read those textbooks and we claim victory over the effects of trisomy in her life. We believe she WILL walk one day, but her feet need to be fixed in order to help her reach this goal. And, while surgery of this nature would be "elective" in that it is not necessary for her health, her foot anomalies create feet that cannot be properly balanced on for walking. Anyone WITHOUT TRISOMY would not be able to walk independently on them. So we choose HOPE and FAITH and will give her every chance to overcome the effects of Trisomy on her body. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnyWGffv__bQERg98Vqd2al1hyhPmWMzPrIoD03wM6K6M_PEbXqwXGsY9c-rG9cxohDLb9pFt9ZpZbV6_FhehKDp1xyzd2SJsbIx_TnXGJgtDJDVhWFIEYfXMt1fJpYzhSGQAYj915yQ8A/s1600/IMG_1780.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnyWGffv__bQERg98Vqd2al1hyhPmWMzPrIoD03wM6K6M_PEbXqwXGsY9c-rG9cxohDLb9pFt9ZpZbV6_FhehKDp1xyzd2SJsbIx_TnXGJgtDJDVhWFIEYfXMt1fJpYzhSGQAYj915yQ8A/s320/IMG_1780.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebekah bright and early at Shriner's waiting for check in.</td></tr>
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On Tuesday, May 14, at 6am, Rebekah checked into the Shriner's Children's Hospital in Greenville, SC for surgery on both of her feet. Rebekah was born with "rocker bottom" feet and has some bone anomalies caused by tight tendons and mis-angled bone. This is how the procedure was described: The surgery consists of releasing the heel cord tendon to drop the back of the foot bone down, allowing the foot to be more flat. He right foot will also have the outside tendon released so that it will not pull the foot outwards. A pin will be placed through soft tissue to try to hold some of the mis-angled bones into better alignment. Both feet will be casted up to her thigh for 6 weeks. Then the casts will be removed, the pin taken out, and her foot molded for AFOs (ankle-foot orthodics). Then lower leg casts will be put on for another 3-4 weeks while the AFOs are being made. This is all soft tissue work and no bone work will be done (directly).<br />
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Once the surgery began, the doctor discovered that Rebekah's calf muscles on both legs actually extended all the way down to her feet as well, and they were released in addition to the Achilles tendon. On her right foot, two tendons on the outside had to be released (instead of just one) and two pins were placed into her foot (versus one) - one from the back and one from the front - through soft tissue to help hold the foot in proper position. Her bones in the front of her foot all curve to the right and, unfortunately, none of this soft tissue surgery will correct that. But hopefully the more neutral position of her foot will correct the growth pattern. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRGFCaY3iyQYf4Wbazu5QNsTAkrzCHI-Fk1qNt205RvvbPzQ8FB_yNAvHyYa1SfOpkmyG9O983rFSsDu3w1q1wAiedgxlO1BDwNIiMbJwCTBA2Co8kzRoyyc8hBBfYZJgvaOgCJhpb6I8E/s1600/IMG_1785.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRGFCaY3iyQYf4Wbazu5QNsTAkrzCHI-Fk1qNt205RvvbPzQ8FB_yNAvHyYa1SfOpkmyG9O983rFSsDu3w1q1wAiedgxlO1BDwNIiMbJwCTBA2Co8kzRoyyc8hBBfYZJgvaOgCJhpb6I8E/s200/IMG_1785.JPG" width="200" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMWcq0zN_DCEUeVjzIlbJWO5P4iDumh4KCNUO6ZRCXEClWxgFhYgkzIMp_8t009rIbjiMkGJld-fNIb4pqVa_QvO8IMtBoRoqsaHjS5kR1Nhdfq9AHQtSkMtm0_HAXAuaQwSxwv-Ywr7wp/s1600/IMG_1790.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMWcq0zN_DCEUeVjzIlbJWO5P4iDumh4KCNUO6ZRCXEClWxgFhYgkzIMp_8t009rIbjiMkGJld-fNIb4pqVa_QvO8IMtBoRoqsaHjS5kR1Nhdfq9AHQtSkMtm0_HAXAuaQwSxwv-Ywr7wp/s200/IMG_1790.JPG" width="150" /></a><br />
The surgery was successful. Rebekah spent the night in the hospital and it took a few days to get her back to eating. I have to admit, watching her those few days I was really concerned that maybe we had made the wrong decision. She vomited and would not tolerate anything until we gave up on narcotic pain meds and went with just motrin or tylenol. As soon as we dropped the narcotics, she perked up and started acting like her old self! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmhY49KSOHwDxLyXFyZk-DzVjPnmUyxkVQatdajh7FGK4FwyrKWKhL7CUr8879imNhB1_O3K2T72xiq3McGWVSgQ2S4BUr0KivVFziQseL1E_ZJQh1KZ4t65sxKHOnBB0JlDCM1KfIst26/s1600/IMG_1805.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmhY49KSOHwDxLyXFyZk-DzVjPnmUyxkVQatdajh7FGK4FwyrKWKhL7CUr8879imNhB1_O3K2T72xiq3McGWVSgQ2S4BUr0KivVFziQseL1E_ZJQh1KZ4t65sxKHOnBB0JlDCM1KfIst26/s320/IMG_1805.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebekah's pain response causes her whole body to go into a flushing mode. Look at how red her cheeks and arm is. It was also on her chest and upper legs. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCIsLOv4apzXW1gA97eQGAdnbcFtT6z8wiHo-T6QOwI-FhKvn1mQ1iit2Bl6C2gsB_P9SoGNHZu3JOlQcLeUgogw56yAwjuL_r2WqNRAsoij0rarBmKfTyh5DEuf5lCQreVRzdSzxAPe4S/s1600/IMG_1801.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCIsLOv4apzXW1gA97eQGAdnbcFtT6z8wiHo-T6QOwI-FhKvn1mQ1iit2Bl6C2gsB_P9SoGNHZu3JOlQcLeUgogw56yAwjuL_r2WqNRAsoij0rarBmKfTyh5DEuf5lCQreVRzdSzxAPe4S/s320/IMG_1801.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A closer look at her vasodilation reaction to pain.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV_-ZEGwdUhPpfECy6YBWpKAm4JgSRJRJvrrcFUE6RxU-QlBII8ouSUBOVBPi5wqgDwLx-yUwBPmF6H2gSktvXJbcNczx_TF-TJJm7qInjD1DUFwihtDaWw_fy7ZodO2H6r3f9Hbd3F0vO/s1600/IMG_1814.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV_-ZEGwdUhPpfECy6YBWpKAm4JgSRJRJvrrcFUE6RxU-QlBII8ouSUBOVBPi5wqgDwLx-yUwBPmF6H2gSktvXJbcNczx_TF-TJJm7qInjD1DUFwihtDaWw_fy7ZodO2H6r3f9Hbd3F0vO/s320/IMG_1814.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her white casts were overwrapped post-surgery in the color of our choosing. I went with the bright tie-dye/camo colors to match the bright colors that were in all the stores for girl's clothes. :-) Sitting on Rebekah's lap is a new Build-a-Bear (well, dog). Shriner's has a room with all kinds of build-a-bears and each child after a surgery is allowed to pick out a bear and outfit/accessories. Ours has a princess crown and wand and silver shoes. She has a princess t-shirt on. There weren't any really cute princess dressed that didn't clash with the pink on the poodle.</td></tr>
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The casts add a LOT of weight and we are supposed to maintain her feet in an elevated position where the heels do not touch anything in order to minimize pressure sores. Well, let's just say after about a week in the casts, Rebekah got tired of lying in the same position and unable to move. So three weeks into the 6 week full leg cast, she is easily lifting those heavy casts and flinging them all around. She has figured out how to finagle her body back and forth and move across the floor. She is delighting in brutal leg whacks against her family's extremities, and all of us have at least one black and blue mark to show for it! This girl has to have abs of steel by now!<br />
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Please continue to pray with us that her surgery will make a difference on her balance and potential for walking, for the overall success of the surgery once the casts all come off, and for what the future holds for our baby girl.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTyC_FV_LfpXtv6x_cH03RZ5ZiukKBnCNhzl8wW7ezl7FwR663MZk4ExgmHkiNnul54QF7pxvoL9kqfSRnCU0n01vwhxg0Rrl_HIV4MPYa6rQc_JaJ7NR5VNdYAoY2894asZFX84Dx0j5V/s1600/IMG_2014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTyC_FV_LfpXtv6x_cH03RZ5ZiukKBnCNhzl8wW7ezl7FwR663MZk4ExgmHkiNnul54QF7pxvoL9kqfSRnCU0n01vwhxg0Rrl_HIV4MPYa6rQc_JaJ7NR5VNdYAoY2894asZFX84Dx0j5V/s320/IMG_2014.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebekah rockin' her multi-colored tie dye/camo casts as she leans into Daddy for some snuggling time.</td></tr>
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<br />buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com3tag:blogger.com,1999:blog-8557072495696273091.post-25874747661453849822013-04-24T01:08:00.001-04:002013-04-24T01:08:11.036-04:00Make Change Through Grace<blockquote class="tr_bq">
<span style="background-color: white; font-family: Arial, Helvetica, SansSerif, sans-serif; line-height: 23.99147605895996px;">“God appoints our graces to be nurses to other men's weaknesses.” -Henry Ward Beecher</span></blockquote>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">If we only surround ourselves with like-minded people, we will never change the world. Or, worse yet, we may never change for the better. Because, let's face it, we can ALL do something to become better people.</span><br />
<br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">When I was pregnant with Rebekah, I stuck with an ob/gyn who was rude to my husband and I and refused to agree to our plan of an emergency c-section should Rebekah have difficulty during delivery. There were many issues, but he even said at one point, "I didn't go through all those years of school and my practice to deal with THIS." ('this' was my baby girl who he expected to die and this situation that he perceived as a hopeless waste of time.) </span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">Why did we stick with him? For practical reasons, I was close to full term and we didn't have a lot of options. But the real reason is because I knew that, despite his words, he wouldn't have a choice but to help us when it came time for delivery. I also felt in my heart that we just needed to be there and show our faith and strength to him. </span><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;" /><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;"><br />Well Rebekah surprised everyone! When he came to visit us in the hospital a few days after her birth, he looked at Rebekah and said, "You made the right choice." He also told me that if he had another trisomy 18 pregnancy, he will manage it differently. That made it all worth it! And it wasn't the point that Rebekah lived, because we were still very much in a questionable place. It was that we celebrated every moment and, despite planning a funeral and dealing with grieving a lost dream of a "normal" daughter, we were hopeful and loving and forgiving and full of grace.<br /><br />Had we stormed off and changed our plan, or worse yet been ugly and rude, then this doctor's heart would never would have changed. </span><br />
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<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">Because of his change, I can face disapproving or negative medical staff (or people in general) and give them the benefit of the doubt. Sometimes, I find my view is changed along the way too, and that they really did have my daughter's best interest at heart.<br /><br />How many people are in the world that have bad attitudes and erroneous views? And maybe all they need is a little grace and forgiveness? And maybe that grace </span><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.800000190734863px; line-height: 17px;">can result in a changed heart?</span><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;"> And on the flip side, sometimes listening to opinions and views that differ from our can feed our own passions to do good in the world or remind us that maybe we need to change something about ourselves.</span><br />
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">This journey is a tough one. We need to be gentle and forgiving to one another. </span><br />
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<span style="background-color: white; font-family: Arial, Helvetica, SansSerif, sans-serif; line-height: 23.987499237060547px;">“The burden of life is from ourselves, its lightness from the grace of Christ and the love of God.” -William Bernard Ullanthorne (1806-1889)</span></blockquote>
buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-82427508835151701672013-04-21T23:26:00.000-04:002013-04-21T23:26:01.703-04:00Happy 1461 Days of Trisomy 18 Miracles!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU2BSOGSHgzvmQo-qDPmx70v6VEDAxoC8gFJTqVa7GhaoMifdpB2H6hlHn3QrSr0ABLCqvLuoMli-xb2RQr2UhKD9pM8K7Fy5Mxmw_QWMUcXTmptbnWqPsBsoFFVcMJnDx2bn9G_-12j0a/s1600/IMG_1382.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU2BSOGSHgzvmQo-qDPmx70v6VEDAxoC8gFJTqVa7GhaoMifdpB2H6hlHn3QrSr0ABLCqvLuoMli-xb2RQr2UhKD9pM8K7Fy5Mxmw_QWMUcXTmptbnWqPsBsoFFVcMJnDx2bn9G_-12j0a/s400/IMG_1382.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy 4th birthday to our little miracle girl! In case you are checking your math, it's 1461 days because she lived through 1 leap year! ;-)</td></tr>
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Exactly 4 years today, Rebekah Faith Budd was born into this world with Full Trisomy 18. She was never expected to make it to birth, let alone be here 4 glorious years! In fact, we actually had her funeral planned before she was even born. Then she went home on hospice as everyone waited for her to just die. But, oh, how we like God's plan so much better than the one that we had!<br />
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A friend commented to me today that she remembers visiting us in the hospital when our sweet baby was born. She had to leave to get ready for her own daughter's princess birthday party. I told her, "I hope one day my little girl can have a princess party." And she told us that one day she will. This memory brought tears to my eyes. And we did, her first birthday party was a princess party.<br />
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Words cannot explain how awesome it is to celebrate this miraculous 4th birthday... in fact, we've had 1461 miraculous days of full trisomy 18 living! God is good!<br />
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Here is a look back through time. How she has changed!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlttD-rRMcrANkeFpULkba3tKsUymjSChOIWwDLOHzJMM37sK_OGOVeCMaYfAffZnoVG3Sr8RV0IfzVs13u4M0qtR01Ajp_Ms1MsoWijpBb9ZPMNNkKhcqHatHfIfRP8xRGNks9Eg-PdPA/s1600/PICT5911.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlttD-rRMcrANkeFpULkba3tKsUymjSChOIWwDLOHzJMM37sK_OGOVeCMaYfAffZnoVG3Sr8RV0IfzVs13u4M0qtR01Ajp_Ms1MsoWijpBb9ZPMNNkKhcqHatHfIfRP8xRGNks9Eg-PdPA/s320/PICT5911.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebekah's Birthday Day - March 21, 2009. She was 4 lb 6 oz.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIECC5eWfdaybV51BFAzZ6awySvEUoIt6ycNVsxbcN0IyQFODR0Ijk9hR3kVcInGVxuy6DH-sKfUzfdYg9d-qoLRGTES-9Kn2OewKXPT0jjHvcgdtlpavCu1iLw4-FUbKKhknbacuJ7A8x/s1600/IMG_0001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIECC5eWfdaybV51BFAzZ6awySvEUoIt6ycNVsxbcN0IyQFODR0Ijk9hR3kVcInGVxuy6DH-sKfUzfdYg9d-qoLRGTES-9Kn2OewKXPT0jjHvcgdtlpavCu1iLw4-FUbKKhknbacuJ7A8x/s320/IMG_0001.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">From the beginning we were surrounded with other trisomy 18 miracles! Here are her local friends: Dawson and Kaylen.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSpuyVF159DnDbCQb9Xc6L_c6zUJnp-_BESsQPopIVYnYMIWK71z9GSzOkSjNbnDPNMBVs-zW_vJryLiYE75vPGXfldguwfJZZNMbCSgWtQKB3Ny61Q_d1I_INl2YShiL8EuTfnRTpEmxG/s1600/DSCN0324.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSpuyVF159DnDbCQb9Xc6L_c6zUJnp-_BESsQPopIVYnYMIWK71z9GSzOkSjNbnDPNMBVs-zW_vJryLiYE75vPGXfldguwfJZZNMbCSgWtQKB3Ny61Q_d1I_INl2YShiL8EuTfnRTpEmxG/s320/DSCN0324.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Celebrating Rebekah's 1st birthday along with 3 other trisomy 18 friends! Dawson and Kaylen are in the front row and Natalie is in the back row. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY4X06s0rME2HMg9I0IcczbhMSdqd3e9mdZrGvj9AodYcKLXzXq-w6X7qWUedVt1ha5oRsBAPx33UtucABhZ_Us1np-b0qTrO-Vo1g-_RRDHTxrwd5_Cckr8yKhA7bOnh35VG2lBzo24AL/s1600/110428+Celebrating+MKBs+Birthday+(9)+picniked.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY4X06s0rME2HMg9I0IcczbhMSdqd3e9mdZrGvj9AodYcKLXzXq-w6X7qWUedVt1ha5oRsBAPx33UtucABhZ_Us1np-b0qTrO-Vo1g-_RRDHTxrwd5_Cckr8yKhA7bOnh35VG2lBzo24AL/s320/110428+Celebrating+MKBs+Birthday+(9)+picniked.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is Rebekah around her 2nd birthday. How she loves her family!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDVOT_310MgQcqjJagdBjSsCQKuvw9AjIZSm5nafnDOXk9D9VRTv7t83oPkHVfwF65it3eseqjKNnWPrWbePIOrcjMQsa23YxpfYw9cT0OIjRNt0_qz_W8gXiiyhfi5xQShMZ6YR6LRjbZ/s1600/120420+RFB+Standing+at+JMB+K4+Art+Show+(4).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDVOT_310MgQcqjJagdBjSsCQKuvw9AjIZSm5nafnDOXk9D9VRTv7t83oPkHVfwF65it3eseqjKNnWPrWbePIOrcjMQsa23YxpfYw9cT0OIjRNt0_qz_W8gXiiyhfi5xQShMZ6YR6LRjbZ/s320/120420+RFB+Standing+at+JMB+K4+Art+Show+(4).JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebekah's 3rd birthday brought more joys.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRZqWuBpX_1ZaqPc1l863rDv3wSjy0n41W4wvKKDWkgYsBK1GZnML8Nkcb13SxBsfBydCB8a8w6FS8E_Sy4UU9x9F19AV8wGCVF0BMbTGD6cVKDNpLNfdLYUOhhhKQqmA-h86sqPoqSGC0/s1600/120421+RFB+Birthday+Party+(37).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRZqWuBpX_1ZaqPc1l863rDv3wSjy0n41W4wvKKDWkgYsBK1GZnML8Nkcb13SxBsfBydCB8a8w6FS8E_Sy4UU9x9F19AV8wGCVF0BMbTGD6cVKDNpLNfdLYUOhhhKQqmA-h86sqPoqSGC0/s320/120421+RFB+Birthday+Party+(37).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebekah celebrated her 3rd birthday with several more trisomy friends! Here she is with her TFFs. Joey and Lily are about Rebekah's age, and Kaylen is about 12!</td></tr>
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<br />buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com4tag:blogger.com,1999:blog-8557072495696273091.post-81022136573492810372013-04-06T17:55:00.001-04:002013-04-06T17:55:30.174-04:00Uniparental Disomy and Karotypes<br />
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Day 29: Uniparental Disomy</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">On our 29th day of MARCHING into TRISOMY AWARENESS we are going to share a little bit about UNIPARENTAL DISOMY. Uniparental disomy (UPD) occurs when a person receives two copies of a chromosome, or of part of a chromosome, from one parent and no copies from the other parent. UPD can be the result of heterodisomy, in which a pair of non-identical chromosomes are inherited from one parent or isodiso</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">my, in which a single chromosome from one parent is duplicated. Because it may lead to the duplication of lethal recessive genes, isodisomy is potentially dangerous, while heterodisomy is essentially benign. This can also be the result of a TRISOMY CELL RESCUE (also known as trisomy rescue or trisomy zygote rescue) a genetic phenomenon in which a fertilized ovum containing three copies of a chromosome loses one of these chromosomes to form a normal, diploid chromosome complement. If both of the retained chromosomes came from the same parent, then uniparental disomy results. Share because you care...we did ♥</span><br />
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Day 30: Karotypes</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 30th day of MARCHING into TRISOMY AWARENESS we are going to share a little bit about KAROTYPES A karyotype (Greek karyon = kernel, seed or nucleus) is the number and appearance of chromosomes in the nucleus of a eukaryotic cell. The </span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">term is also used for the complete set of chromosomes in a species, or an individual organism. Karyotypes describe the number of chromosomes, and what they look like under a light microscope. Attention is paid to their length, the position of the centromeres, banding pattern, any differences between the sex chromosomes, and any other physical characteristics.The preparation and study of karyotypes is part of cytogenetics. The study of whole sets of chromosomes is sometimes known as karyology. The chromosomes are depicted (by rearranging a microphotograph) in a standard format known as a karyogram or idiogram: in pairs, ordered by size and position of centromere for chromosomes of the same size.The study of karyotypes is important for cell biology and genetics, and the results may be used in evolutionary biology and medicine. Karyotypes can be used for many purposes; such as to study chromosomal aberrations, cellular function, taxonomic relationships, and to gather information about past evolutionary events. The normal human karyotypes contain 22 pairs of autosomal chromosomes and one pair of sex chromosomes. Normal karyotypes for females contain two X chromosomes and are denoted 46,XX; males have both an X and a Y chromosome denoted 46,XY. Any variation from the standard karyotype may lead to developmental abnormalities. Share because you care...WE DID ♥</span><br />
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<br />Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-73332841545912210982013-04-06T17:52:00.003-04:002013-04-06T17:52:23.284-04:00Dicentric Chromosomes, Centromere Positioning, Autosomes & AllosomesStill catching up! Days 26 - 28. See <a href="https://www.facebook.com/HopeForTrisomy13and18" target="_blank">Hope for Trisomy</a> for more educational posts!<br />
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Day 26: Dicentric Chromosome</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">On our 26th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about a STRUCTURAL ABNORMALITY that we have not mentioned before. A DICENTRIC CHROMOSOME is the result of a rearrangement that places two centromeres on the same chromosome. The interaction of radiation with these chromosomes causes the break and then it becomes unstable, which often involves a loss of some genetic material. The formation of a dicentric chromosome is highly specific to ionizing radiation and its frequency serves as a measure of radiation exposure received by a person. In the event of higher exposure to radiation, such breaks may occur in more than one chromosome. Share because you Care. ♥</span><br />
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Day 27: Metacentric, Submetacentric, Acrocentric, and Telocentric Centromere Positions</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">On our 27th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about four types of chromosomes based on the position of the centromere. The four types are Metacentric, Submetacentric, Acrocentric, and Telocentric. Metacentric is a type of chromosome having two equal arms because the centromere is in the median position. Submetacentric is a type of chromosome where the centromere i</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">s slightly away from the centre and therefore chromatids of one side are a little longer than the other side. Acrocentric is a type of chromosome where the centromere is located closer to one end and therefore the chromatids on the opposite side are very long. The small round structure is referred to as a satellite, and the thin strands at the satellite region are termed the Nucleolar Organiser Region. Telocentric is a type of chromosome where the centromere is placed at one end of the chromatid, hence only one arm. The telocentric chromosomes are not seen in human cells. Share because you Care. ♥</span><br />
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Day 28: Autosomes and Allosomes</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">On our 28th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about the chromosome types that are divided into two categories, those being the AUTOSOMES and ALLOSOMES. AUTOSOMES are the structures that contain the hereditary information. They do not contain the information related to reproduction and sex determination. Autosomes are identical in both male and females. The human b</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">ody contains 22 pairs of autosomes. An ALLOSOME is a sex chromosome that differs from an ordinary autosome in form, size, or behavior. The X chromosomes are present in the ovum and either the X or Y chromosome can be present in the sperm. If the offspring receives one X chromosome from the mother as well as father, it results in a female child (XX). If the offspring receives one X chromosome from the mother and one Y chromosome from the father, it results in a male child (XY). It is the donation of the X or Y chromosome by the father that determines the sex of the offspring. Since only males have a Y chromosome, then there must be a gene that makes the individual a male. Scientists have identified and isolated this gene and have termed it the SRY gene. Interestingly enough, this gene does not activate until 6 weeks after conception. Once activated, female structures are destroyed and the individual develops as a male. Share because you Care. ♥</span><br />
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<br />Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-89681935728870032192013-04-06T17:45:00.002-04:002013-04-06T17:45:48.482-04:00Trisomy Awareness Month Catch Up Time! (Days 23-25) Insertion, Deletion, and DuplicationIllness hit our family - that wonderful stomach bug that lasts for days. And, unfortunately, I was the one having to take care of everyone! We survived just in time for our spring break week. But we went out of town and were without Internet or PC, so I couldn't continue the posts. So I am catching up! These excellent summaries are posted on our <a href="https://www.facebook.com/HopeForTrisomy13and18" target="_blank">Hope for Trisomy Facebook page</a>. Please become a fan!<br />
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Day 23: Insertion</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">On our 23rd day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little more about the STRUCTURAL ABNORMALITY called an INSERTION. An insertion is when a portion of one chromosome has been deleted from its original place and inserted into another chromosome. Insertions can be anywhere in size from one base pair incorrectly inserted into a DNA sequence to a section of one chromosom</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">e inserted into another.The insertion changes the number of DNA bases in a gene by adding a piece of DNA. As a result, the protein made by the gene may not function properly. Insertions can be particularly hazardous if they occur in an exon, the amino acid coding region of a gene. It can possibly result in any number of genetic disorders depending on the gene in which the insertion occurs. Share because you Care. ♥</span><br />
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Day 24: Deletion</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">On our 24th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little more about the STRUCTURAL ABNORMALITY called DELETION. A deletion occurs when some genetic material is lost when a chromosome breaks. A deletion can occur on any chromosome, at any band, and can be any size (small, medium or large). How big a piece is missing and what genes are missing in the section will depe</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">nd on what the deletion causes. Small deletions are less likely to be fatal. Medium-sized deletions can lead to disorders like Williams syndrome. Large deletions are usually fatal, and there are always variations based on which genes are lost. Deletions are responsible for an array of genetic disorders, including some cases of male infertility and two thirds of the cases of Duchenne muscular dystrophy. When there is a deletion in part of the short arm of chromosome 5, this results in Cri du chat syndrome. A chromosome deletion causes many different disorders. There are also many different symptoms and severity of symptoms depending on which chromosome was deleted and how much. Here is an example of a chromosome finding; 46,XX,del(14)(q23)<br />This means...a female with 46 chromosomes with a deletion of chromosome 14 on the long arm (q) at band 23. Share because you Care. ♥</span><br />
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Day 25: Duplication</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">On our 25th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little more about the STRUCTURAL ABNORMALITY called DUPLICATION. A chromosome duplication is the doubling of a chromosome piece. A duplication can have the production of one or more copies of any piece of DNA, including sometimes a gene or even an entire chromosome. A duplication is sometimes referred as a 'partial t</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px;">risomy'. This means the individual has three copies of that area instead of two. Therefore, there are extra instructions (genes) present that can cause an increased risk for birth defects or developmental problems. Charcot-Marie-Tooth disease type I is a disease related to a chromosomal duplication. Here is an example of a chromosome finding; 46,XY,dup(7)(q11.2q22) This means...a male with a duplication of chromosome 7 on the long arm (q) between bands 11.2 to 22. Share because you Care. ♥</span><br />
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<br />Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-63381576941946799782013-04-06T11:05:00.000-04:002013-04-06T11:09:34.571-04:00Immune System Surprises and Vaccination Antibody TitersRebekah has been getting a ton of "colds" and ear infections since getting ear tubes last August. It's possible that she may be getting the same amount, but now that we see her ears draining, we pay more attention to her symptoms. But it feels like we are on an antibiotic at least once a month for an "ear infection". This is on top of her prophylactic antibiotics for UTIs.<br />
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<tr><td class="tr-caption" style="text-align: center;">Parts of the Immune System</td></tr>
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The immune system is a complex, wonderous design! There are blood tests that can measure your infection fighting proteins (called immunoglobulin) and whether you have an immune system deficiency. It's not uncommon for people with genetic disorders to have some issues resulting in medical fragility and possible immune system disorders. In fact, Rebekah's endocrinologist had ordered all kinds of tests back in November when she broke her femur. Among these were immune system blood studies (IgA, IgG, IgM), but nothing came back out of the ordinary.<br />
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Her ENT recently ordered immune tests again and included antibody titer testing for Pneumococcal and HiB, both which are common in causing reoccurring ear infections. Now Rebekah has received all of her immunizations (including all recommended doses for both), so her titer tests should show a number indicating she has antibodies to fight these. However, if the number is low, it means you might benefit from a booster immunization. Guess what?! They were low!<br />
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The <a href="http://www.cdc.gov/vaccines/vpd-vac/pneumo/" target="_blank"><b>pneumococcal vaccine</b></a> covers different types of pneumococcal disease, such as pneumococcal pneumonia, bacteremia (can cause blood infections), meningitis, and otitis media (ear infections). Here is some <a href="http://www.cdc.gov/vaccines/vpd-vac/pneumo/in-short-both.htm" target="_blank">additional information on this vaccine</a>.<br />
The <a href="http://www.cdc.gov/vaccines/vpd-vac/hib/" target="_blank"><b>Hib vaccine</b></a> (Haemophilus influenzae type b) vaccine prevents illnesses such as meningitis, pneumonia, epiglottitis, bacteremia (blood infection), and cellulitis. <a href="http://www.cdc.gov/hi-disease/about/types-infection.html" target="_blank">Additional information on Hib here</a>.<br />
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Considering many of these (especially pneumonia) are common (and possibly deadly!) to trisomy kids, you can see my surprise and concern over our titer numbers being low! But now it gets confusing and we will most likely be making a consult with Infectious Disease to discuss our findings. You can google all kinds of info about titers and it might convince you that vaccines are useless anyway. And were this an issue for one of my other kids, I might not be so concerned. But having 5 kids, exposure to germs and viruses is a given. Obviously we do not want to expose Rebekah to diseases unknowingly and we do want to protect her. Her body cannot fight off illnesses like a typical person and we already know that. Having a child like Rebekah sometimes makes you go against your normal course of action because there is no book written on how to deal with these issues.<br />
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Here is an <a href="http://www.cartage.org.lb/en/themes/sciences/LifeScience/GeneralBiology/Immunology/ImmunityInfection/ImmuneDeficiency/ImmuneDeficiency/ImmuneDeficiency.htm" target="_blank">interesting article on Immune Deficiency</a> that has this to to say:<br />
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"Normal immunoglobulin levels in a child who nonetheless doesn't respond appropriately to the vaccinations suggests that the immune system isn't functioning properly. ...<br />
Your first symptoms are likely to be <u>recurrent bacterial infections</u> involving the ears, sinuses, nose, bronchi and lungs. If your infections are severe enough and recur often enough, you can permanently damage the bronchial tree. ... Bacteria (Hemophilus influenzae, pneumococci and staphylococci) that are wide-spread in the general population may cause <u>pneumonia</u>.... Not only do patients with common variable immunodeficiency have a depressed antibody response and low levels of antibody in their blood (hypogammaglobulinemia), but the antibodies that they produce may also attack some of their own tissues (autoantibodies). The autoantibodies may attack and destroy red blood cells, white blood cells or platelets, and may cause other disorders as well. Among the most common are <u>gastrointestinal complaints</u>, such as abdominal pain, bloating, nausea, vomiting, diarrhea and weight loss."</blockquote>
So, when Rebekah gets her 4 year check up in a few weeks, we will be adding boosters of these two vaccines to her to do list, and we may request more antibody titer tests to figure out what to do next! The strange thing for us is that we didn't receive any red flags on her actual immune system checks. I don't recall it ever being suggested that tri kids get antibody titer testing done if they have repeat infections. So I wonder if this MAY indeed be an issue with many other kids, especially ones that have reoccurring pneumonias! And the surprise is that testing could show no basic immune issue but the titer testing could show ineffective vaccination!<br />
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Anyway, I wanted to share this finding because we already tested her immune system and hadn't found anything unusual. But this is just like her bones - Rebekah has normal blood levels of calcium, phosphorus, D, etc that go into bone development, but her trisomy is affecting her at a cellular level and disrupting proper bone construction. It appears that we have a similar issue in the immune system with everything appearing to be right (from a numbers standpoint), but not from a functional standpoint. <br />
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I think this would make for some interesting studies!! If anyone has more info on this or similar experiences, please share!<br />
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<tr><td class="tr-caption" style="text-align: center;">This is an overview of how how our immune system works. Though this post isn't about the mechanics of the immune system, I think this helps to visualize all the places something can "go wrong" in our immune system.</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com1tag:blogger.com,1999:blog-8557072495696273091.post-52922218955053970132013-03-22T22:09:00.000-04:002013-03-22T22:09:32.661-04:00Isochromosomes, Inversions, and a little T21 on topWe're almost to the end of Trisomy Awareness Month and I want to continue sharing the Hope for Trisomy daily tidbits put together by my friend Alisha.<br />
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Day 20: Isochromosomes</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 20th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about a rare structural abnormality, known as ISOCHROMOSOME. The chromosomes produced by this abnormal division are one chromosome having the two long arms of t</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">he original chromosome, but no short arms, and the other chromosome consisting of the two short arms and no long arms. This constitutes a simultaneous duplication and deletion. Isochromosomes are often found in females with Turner syndrome and can be found in tumors. Share because you Care. ♥</span><br />
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Day 21: Down Syndrome Awareness</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 21st day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about the MOST COMMON TRISOMY. Trisomy 21 (Down syndrome) is when there are 3 copies of the chromosome 21, instead of the normal 2. The conditions associated with Down syndrome vary from person to person and can range from mild to severe. However, children with Down syndrome have a widely recognized appearance. Their h</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">ead may be abnormally shaped and smaller, and the inner corner of the eyes rounded instead of pointed. All Down syndrome individuals experience cognitive delays, but the intellectual disability is usually mild to moderate. This chromosome abnormality occurs in about 1 in 700 newborns. The mother's age is the only factor that has been shown to increase the risk, especially after the mother is 35 years of age. However, since younger women are more likely to have children, the percentage is higher in women younger than 35 years of age. It is important to remember that ALL individuals diagnosed with Down syndrome live happy, productive lives well into adulthood. Share because you Care. ♥</span><br />
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Day 22: Paracentric and Pericentric Inversions</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 22nd day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little more about the STRUCTURAL ABNORMALITY called an INVERSION. An inversion occurs when a chromosome breaks in two places. Then the resulting piece of DNA is reversed and re-inserted into the chromosome. There are 2 types of inversions which are called pericentric and paracentric. The inversion that involves the c</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">entromere is called pericentric, and paracentric is when the centromere is not involved. The most common inversion seen in humans in on chromosome 9. This inversion is usually considered harmless, but there are suspicions that it could lead to an increased risk for miscarriage or infertility. An inversion does not mean there is a loss of genetic information, it just simply rearranges it. Share because you Care. ♥</span><br />
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<br />buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-29736215721885053602013-03-19T15:18:00.000-04:002013-03-19T15:18:39.270-04:00Days 16, 17, 18, 19 and a Bonus for Trisomy 18<h2>
Day 16 - Ring Chromosomes</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 16th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about RING CHROMOSOMES. A ring chromosome is a chromosome in which both ends have been lost (deletion) and the two broken ends have reunited to form a ring-shaped figure. Ring chromosomes may form in cells following genetic damage by mutagens like radiation, but they may also arise spontaneously during development. The</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> issue is that genetic information is often moved or deleted when a ring chromosome forms, and as a result, the genes on that chromosome may not express properly. This can lead to health problems which range from congenital conditions to cancer. Ring chromosomes are very rare, and they have been found in nearly all human chromosomes. Some people have ring chromosomes in their bodies and remain unaware of it, while in other cases, a suspected ring chromosome may be identified shortly after birth. The diversity of the spectrum from profound developmental delays to a blissfully unaware existence illustrates the diversity of human genetics. Share because you Care. ♥</span><br />
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Day 17 - Karotypes and Microarrays</h2>
<a href="https://sphotos-b.xx.fbcdn.net/hphotos-ash4/301536_352416191525158_125003364_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash4/301536_352416191525158_125003364_n.jpg" width="150" /></a><a href="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/402606_352496318183812_2065894769_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/402606_352496318183812_2065894769_n.jpg" width="150" /></a><span style="background-color: white; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><span style="color: #333333;">On our 17th day of MARCHING into TRISOMY AWARENESS MONTH, we first want to wish our supporters a </span><b><span style="color: #38761d;">HAPPY ST. PATRICK'S DAY</span></b><span style="color: #333333;">! Hope for Trisomy would love for you to share a photo of your blessing in GREEN! We are also going to share a genetic analogy. The process can be a little confusing, so we are hoping this analogy will help. Our chromosomes are like a set of 46 encyclopedia books. A chromosome an</span></span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">alysis or karyotype is able to determine if there are any missing or extra books (chromosomes). Our genes are like the sentences on each page of the set of encyclopedia books (chromosomes), and each page of each book contains a unique set of sentences (genes). Each page contains the sentences for approximately 10 to 30 genes. A DNA microarray analysis is able to open up each of the 46 encyclopedia books to determine if there are any missing or extra pages. Our DNA are like the letters that make up each sentence (gene) on each page of the books (chromosomes). Each sentence is made up of a very specific sequence of letters (DNA). Genetic sequencing is able read a specific sentence to determine if there are any spelling mistakes (genetic mutations) in the sentence (gene). Share because you Care. ♥</span><br />
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Day 18 - Trisomy 18</h2>
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 18th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about the 2nd most common Trisomy behind Trisomy 21 (Down syndrome). Trisomy 18 (also called Edwards syndrome) is a genetic disorder where there are 3 copies of the 18th chromosome instead of the normal 2, and because of the third copy...it affects the child both physically and mentally. Unfortunately, there is a high </span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">mortality rate amongst the babies born with this disorder because of how that extra copy affects the development of the body. However, each child is affected differently and there is a wide spectrum of severity amongst babies born with this disorder. Here is a link provided by the SOFT Organization about TRISOMY 18 FACTS. <a href="http://trisomy.org.s113588.gridserver.com/wp-content/uploads/2012/10/Trisomy-18-Facts-8-20-12.pdf" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://<wbr></wbr><span class="word_break" style="display: inline-block;"></span>trisomy.org.s113588.gridser<wbr></wbr><span class="word_break" style="display: inline-block;"></span>ver.com/wp-content/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>uploads/2012/10/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>Trisomy-18-Facts-8-20-12.pd<wbr></wbr><span class="word_break" style="display: inline-block;"></span>f</a> Also, for the families caring for a child diagnosed with Trisomy 18, the SOFT Organization has a book provided at this link, <a href="http://trisomy.org/shop/care-of-the-infant-and-child-with-trisomy-18-or-trisomy-13/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://trisomy.org/shop/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>care-of-the-infant-and-chil<wbr></wbr><span class="word_break" style="display: inline-block;"></span>d-with-trisomy-18-or-triso<wbr></wbr><span class="word_break" style="display: inline-block;"></span>my-13/</a><br />and a guidebook provided at this link.<a href="http://trisomy.org/shop/trisomy-18-a-guidebook-for-families/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://trisomy.org/shop/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>trisomy-18-a-guidebook-for-<wbr></wbr><span class="word_break" style="display: inline-block;"></span>families/</a> Share because you Care. ♥</span><br />
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<b style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><i>Bonus T18 Share for the official Trisomy 18 Awareness Day!</i></b></div>
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One of the most notable things about trisomy 18 children are long and gorgeous eyelashes! Although eye problems are not one of the top concerns in a child with trisomy 18, we thought we'd share a photo example of their gorgeous eyes and share a list of some common Eye Features of Trisomy 18.<br />
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<b>LONG EYELASHES</b> - Although we can't find an act<span class="text_exposed_show" style="display: inline;">ual publication that states this as a characteristic of trisomy 18, every T18 parent knows this! In fact, we like to joke that "the length of your eyelashes is directly proportional to the amount of 18th chromosomes you have." :-) That isn't really true, but there is definitely a correlation between long lashes and trisomy 18! All you have to do is look at just about any portrait of a T18 child.<br /><br /><b>WHORLED/ARCHED EYEBROWS</b> - Commonly develop into a uni-brow too. <a href="http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F22901740&h=gAQG4Teiz&s=1" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://<wbr></wbr><span class="word_break" style="display: inline-block;"></span>www.ncbi.nlm.nih.gov/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>pubmed/22901740</a><br /><br /><b>COLOBOMA </b>- A small keyhold in the iris or other area of the eye. <a href="http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC3520824%2Ftable%2FT2%2F&h=5AQGipbXV&s=1" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://<wbr></wbr><span class="word_break" style="display: inline-block;"></span>www.ncbi.nlm.nih.gov/pmc/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>articles/PMC3520824/table/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>T2/</a><br /><br /><b>PHOTOPHOBIA </b>- Extreme light sensitivity causing sneezing, closing of eyes, aversion to light, etc. <a href="http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F23088440&h=xAQGF5XrJ&s=1" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://<wbr></wbr><span class="word_break" style="display: inline-block;"></span>www.ncbi.nlm.nih.gov/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>pubmed/23088440</a><br /><br />Other eye anomalies can include blue sclerae, ptosis, microphthalmia, cataract, corneal opacities, strabismus.<br /><br />If you look closely at this lovely T18 model's eyes, you can see somewhat tilted heart-shaped iris colobomas. ♥<br /><br />Visit <a href="https://www.facebook.com/HopeForTrisomy13and18" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">https://www.facebook.com/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>HopeForTrisomy13and18</a> for facts, fun, advocacy, hope, and more!</span></div>
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<span style="font-family: inherit;">Please note - </span><br />
<span style="font-family: inherit;">
<span id=".reactRoot[79].[1][2][1]{comment352752024824908_653693}.0.[1].0.[1].0.[0].[0][2].0.[0]" style="background-color: #edeff4; line-height: 14px;"><span id=".reactRoot[79].[1][2][1]{comment352752024824908_653693}.0.[1].0.[1].0.[0].[0][2].0.[0].[0]">Unless your child has other health issues, developmental delays, and other symptoms of a genetic disorder, you should not have to worry if they have some of these eye conditions. All of these eye conditions can occur in genetically normal persons. Howe</span></span><span id=".reactRoot[79].[1][2][1]{comment352752024824908_653693}.0.[1].0.[1].0.[0].[0][2].0.[3]" style="background-color: #edeff4; line-height: 14px;"><span id=".reactRoot[79].[1][2][1]{comment352752024824908_653693}.0.[1].0.[1].0.[0].[0][2].0.[3].0"><span id=".reactRoot[79].[1][2][1]{comment352752024824908_653693}.0.[1].0.[1].0.[0].[0][2].0.[3].0.[0]">ver, the whorled eyebrows and long lashes are one common feature of trisomy 18 children that parents readily recognize. They do occur in some other genetic disorders as well. So we thought it would be interesting to point out some common eye features for those with trisomy 18 children that may not have realized are "normal" for trisomy 18. <span class="emoticon emoticon_smile" style="background-image: url(https://fbstatic-a.akamaihd.net/rsrc.php/v2/yi/r/lzUnnSufXEv.png); background-position: -34px -644px; background-size: auto; display: inline-block; height: 16px; vertical-align: top; width: 16px;"></span> So please do not worry if your child has long eyelashes and bushy eyebrows, it is most likely just hereditary! But for those already diagnosed with a genetic condition, it may simply be a "normal" trait of that condition.</span></span></span></span><br />
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<h2>
Day 19 - Translocations</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 19th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little more about TRANSLOCATION, which is a structural abnormality in reference to chromosomes. Translocation is used when the location of specific chromosome</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> material changes. The two main types of translocations are reciprocal and Robertsonian. In a reciprocal translocation, two different chromosomes have exchanged segments with each other. In a Robertsonian translocation, an entire chromosome attaches to another at the centromere. Translocations can be balanced or unbalanced. The balanced translocation is a rearrangement of the genetic material without any gain or loss of DNA. An unbalanced translocation IS a gain or loss of DNA, so the cell has an abnormal amount of genetic material. Often times, unbalanced translocations result in a birth defect, stillbirth, or a spontaneous abortion. Share because you Care. ♥</span><br />
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<br />buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-44154326865205197822013-03-15T12:57:00.004-04:002013-03-15T13:02:31.174-04:00The 13th-15th DaysShared from <a href="https://www.facebook.com/HopeForTrisomy13and18" target="_blank">Hope for Trisomy on Facebook</a>. Please visit our page for links to photos, stories, and more!<br />
<h2>
Day 13:</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 13th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about 1 of the 3 MOST COMMON trisomies...TRISOMY 13 (PATAU SYNDROME), with Trisomy 18 (Edwards syndrome) and Trisomy 21 (Down syndrome) being the other two. Tri</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">somy 13 (also called Patau syndrome) is a genetic disorder in which a person has three copies of genetic material from chromosome 13, instead of the usual two copies. Rarely, the extra material may be attached to another chromosome (translocation).<a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002625/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002625/</a>And...here is a link provided by the SOFT Organization about TRISOMY 13 FACTS.<a href="http://www.facebook.com/l.php?u=http%3A%2F%2Ftrisomy.org.s113588.gridserver.com%2Fwp-content%2Fuploads%2F2012%2F10%2FTrisomy-13-Facts-8-20-12.pdf&h=BAQGEtqhk&s=1" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://trisomy.org.s113588.gridserver.com/wp-content/uploads/2012/10/Trisomy-13-Facts-8-20-12.pdf</a> Also, for the families caring for a child diagnosed with Trisomy 13, the SOFT Organization has a book provided at this link<a href="http://trisomy.org/shop/care-of-the-infant-and-child-with-trisomy-18-or-trisomy-13/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://trisomy.org/shop/care-of-the-infant-and-child-with-trisomy-18-or-trisomy-13/</a> and a guidebook provided at this link<a href="http://trisomy.org/shop/trisomy-13-a-guidebook-for-families/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://trisomy.org/shop/trisomy-13-a-guidebook-for-families/</a>Share because you Care ♥</span><br />
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<h2>
Day 14:</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 14th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about TELOMERES. Telomeres are repetitive stretches of DNA located at the ends of linear chromosomes. They protect the ends of chromosomes in a manner similar t</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">o the way the tips of shoelaces keep them from unraveling. In many types of cells, telomeres lose a bit of their DNA every time a cell divides. Eventually, when all of the telomere DNA is gone, the cell cannot replicate and dies. White blood cells and other cell types with the capacity to divide very frequently have a special enzyme that prevents their chromosomes from losing their telomeres. Because they retain their telomeres, such cells generally live longer than other cells. Telomeres also play a role in cancer. The chromosomes of malignant cells usually do not lose their telomeres, helping to fuel the uncontrolled growth that makes cancer so devastating. Share because you Care. ♥</span><br />
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Gabby Arthurs, trisomy 14, took home the NC Miss Amazing Queen crown in Murphy, NC on 3/2/13 and is going to Nationals in Nebraska in August!</span><br />
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<h2>
Day 15:</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 15th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about TRIPLOIDY. Triploidy is a rare lethal chromosome abnormality caused by the presence of an entire extra set of chromosomes. A fetus with triploidy has 69 c</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">hromosomes, rather than 46. Most studies seem to suggest that around two thirds of triploid pregnancies are boys, while around one third are girls. Triploidy is not the same as Trisomy. People with trisomy have a single extra chromosome, making a total of 47. Very occasionally, babies with triploidy are born and live for a few hours, days or weeks. One baby reported in the medical literature lived to 10½ months, but this is very rare. Two out of three pregnancies miscarry in the first trimester and almost all other babies die later or are stillborn. UNIQUE has a great explanation of TRIPLOIDY found here (<a href="http://www.rarechromo.org/information/other/triploidy%20ftnw.pdf" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://www.rarechromo.org/information/other/triploidy%20ftnw.pdf</a> ) Hope for Trisomy featured a beautiful baby boy, Castan, diagnosed with Mosaic Triploidy on our photo album TRI-KIDS. Castan lived on earth almost 8 months, and was a blessing to his family. Here is Castan's facebook page<a href="https://www.facebook.com/BelieveInCastan" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">https://www.facebook.com/BelieveInCastan</a> Share because you Care. ♥</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Castan had Mosaic Triploidy and lived an amazing 8 1/2 months.</td></tr>
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<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br /></span>Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-3108368076937589392013-03-15T12:35:00.002-04:002013-03-16T01:07:40.715-04:00Misconception #1 - There is No HopeMany people just don't believe the amount of discrimination and prejudgment that exists for children born with a medical label. When I explain that I personally know MANY families that have been denied medical, life-saving interventions for their trisomy child, I mostly get incredulous looks of disbelief. And while we have never been outright denied intervention, it has certainly been discouraged and discussed along our journey. So I want to take part of TRISOMY AWARENESS MONTH just to do some educating about actual MISCONCEPTIONS that have affected us personally. I may throw in a few examples from friends along the way, but I am going to keep this mostly personal experiences so that no one can claim I am making things up. Our experience has been relatively good. So by the time you read through several posts of our personally-experienced misconceptions, maybe you will have a better idea of the big picture of what many families go through when trying to do their best for their trisomy child.<br />
<blockquote class="tr_bq">
<span class="prondelim" style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: x-small;"><span style="font-family: 'Arial Unicode MS', Arial, Helvetica, sans-serif; font-size: 18px; font-weight: bold;">mis·con·cep·tion </span>[</span><span class="pron" style="background-color: white; display: inline; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: x-small;">mis-k<span class="ital-inline" style="display: inline; font-family: Georgia, Verdana, Arial, Helvetica, sans-serif; font-style: italic;">uh</span><img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" style="border: 0px; vertical-align: text-top;" /><img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" style="border: 0px; vertical-align: text-top;" />n-<span class="boldface" style="font-weight: 700;">sep</span>-sh<span class="ital-inline" style="display: inline; font-family: Georgia, Verdana, Arial, Helvetica, sans-serif; font-style: italic;">uh</span><img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" style="border: 0px; vertical-align: text-top;" /><img alt="" border="0" class="luna-Img" src="http://static.sfdict.com/dictstatic/dictionary/graphics/luna/thinsp.png" style="border: 0px; vertical-align: text-top;" />n</span><span class="prondelim" style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: x-small;">] (from dictionary.com)</span><br />
<span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">a</span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%; mso-fareast-font-family: "Times New Roman";"> false or mistaken view, opinion, or attitude; a
wrong idea, impression; false appearance, false belief; error, misunderstanding<br />
<br />
Synonyms: <b>deception</b>, delusion, error, <b>fallacy</b>,
false impression, fault, illusion, inaccuracy, misapplication, misapprehension,
misconstruction, misjudgment, misinterpretation, mistake, mistaken
belief, misunderstanding, myth, neglect, <b>omission</b>, <b>underestimation</b><br />
Antonyms: accuracy, certainty, comprehension, fact, perception, reality, truth,
understanding</span></blockquote>
<h2>
<u style="font-family: inherit; line-height: 115%;">Misconception #1: There is No Hope for Trisomy</u></h2>
<blockquote class="tr_bq">
<span style="font-family: inherit;"><span style="line-height: 18px;">Rom 15:13 - </span><span style="background-color: white;">I pray that God, the <b>source of hope</b>, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.</span></span></blockquote>
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<span style="line-height: 18px;">There is no denying it - the statistics are not good. 90-95% of trisomy 18/13 babies will not make it to birth. Most will miscarry in the first 2 trimesters from chromosomal-caused complications. Many will be aborted just because they are imperfect and have a label. However, up to 10% will make it to birth! That is a glimmer of hope right there! There are records of trisomy 18 and 13 children living into their 30's. Yes, this is rare, but POSSIBLE. Many that do survive may need heart surgery or gastronomy tubes to thrive. And the medical evidence shows that children ARE surviving these interventions! </span></div>
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<span style="line-height: 18px;"><br /></span></div>
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<span style="line-height: 18px;">Despite the trisomy type, chromosome condition, or medical label, my take on it is this - for the babies that make it to birth, they have already proven something! </span><span style="line-height: 18px;">There IS HOPE. </span><span style="line-height: 18px;">Why not give them a chance? </span></div>
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<span style="line-height: 18px;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh91r71XPC0ygJDAjVx2P4ld2o-sOxOapdn3Z7m-nIBBAerACQ0cEDbVv0C4blSyGXote1g6rb5nLGiP4Sf8BmtZ9Jpvu52v1YyXL0BvSDwJs-LseyQNgv96NiPAnMnzTq7qgG1rInoWzoJ/s1600/RFB+-+Hope+for+Trisomy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh91r71XPC0ygJDAjVx2P4ld2o-sOxOapdn3Z7m-nIBBAerACQ0cEDbVv0C4blSyGXote1g6rb5nLGiP4Sf8BmtZ9Jpvu52v1YyXL0BvSDwJs-LseyQNgv96NiPAnMnzTq7qgG1rInoWzoJ/s320/RFB+-+Hope+for+Trisomy.jpg" width="228" /></a></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;"><br /></span></span></div>
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<span style="font-family: inherit;">We were
given details about Rebekah having the following issues, probably around the time we got our
amniocentesis results (~19 weeks). </span></div>
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</div>
<ul type="disc">
<li class="MsoNormal"><span style="font-family: inherit;">choroid plexus
cysts (cysts on the brain that are often markers of trisomy 18) &
brain malformations - we would
be at high risk for severe intellectual disability and seizures.<br />
=> The cysts went away and the brain abnormalities are still
there. We are praising God that at
almost 4 years old, we still have no seizures and her brain MRIs have
shown improvement in "white matter diffusion" issues and EEGs
have shown improvement in synapse development and electrical activity.<o:p></o:p></span></li>
<li class="MsoNormal"><span style="font-family: inherit;">a large VSD
(ventricular septal defect - a hole in the lower portion of the
heart)<br />
=> Rebekah's VSD closed on its own
at about 30 weeks gestational age! <o:p></o:p></span></li>
<li class="MsoNormal"><span style="font-family: inherit;">one kidney<br />
=> Rebekah was born with TWO
kidneys! One was just smaller than the other. However, at 1 year old
during a routine (for trisomy 18 kids) abdominal ultrasound, it was
discovered that the second kidney is actually full size, but it is a
horseshoe kidney that wraps around her back and is connected to the
"normal-looking" kidney. Turns out horseshoe kidneys are fairly
common in trisomy 18 kids.<o:p></o:p></span></li>
<li class="MsoNormal"><span style="font-family: inherit;">clenched fists<br />
=> Rebekah's hands were clenched,
and even today when she is upset or stressed, she tightens them up.
However, we have always been able to open her hands up and they are not
"frozen" into position. <o:p></o:p></span></li>
<li class="MsoNormal"><span style="font-family: inherit;">rocker-bottom
feet<br />
=> Rebekah does have rocker-bottom
feet and, after 3 years of pushing for resolution, we are set to have
surgery on her feet in May 2013! We are confident that Rebekah will
walk one day so we will do what we need to to give her the opportunity to
achieve her milestones.<o:p></o:p></span></li>
<li class="MsoNormal"><span style="font-family: inherit;">2-vessel cord -
carries much higher risk than the typical 3 vessel cord<br />
=> Despite the 2-vessel cord, my cord flow remained good through the
pregnancy.<o:p></o:p></span></li>
<li class="MsoNormal"><span style="font-family: inherit;">very slow growth<br />
=> Rebekah was born with a typical
trisomy 18 birthweight - she was 4 lb 8 oz at 38 weeks when we were induced.
She has gained weight well and followed a typical growth curve, even
though she is at the bottom of it.<o:p></o:p></span></li>
<li class="MsoNormal"><span style="font-family: inherit;">low amniotic
fluid - This can indicate kidney and urinary tract issues and genetic
defects, increases risk of fetus injury, can affect proper bone growth,
and increases the risk of miscarriage and stillbirth and increase labor
complications like cord compression (which is a big concern when you
already have a 2 cord vessel).<br />
=> We had low amniotic fluid
during most of the pregnancy. This is atypical - usually polyhydraminos
(too much amniotic fluid) is more common. <o:p></o:p></span></li>
</ul>
<br />
<div>
<div class="MsoNormal">
<span style="font-family: inherit;">We started out with no hope for Rebekah. Online resources were very different a mere 4 years ago. What was available - stories of heartache, articles supporting nonintervention, videos of families saying goodbye too soon, and old genetics textbooks being used to give us out-of-date information and lack of hope or support. We planned Rebekah's funeral before she was even born. We didn't prepare a room. We didn't buy clothes or baby things. </span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">But God gave us strength and HOPE to get through those dark days, and Rebekah proved to be a fighter.</span></div>
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEcvcqkDM2-m9PFBDy9NBdzlMEfNeq6K0oOvLbABXfoUkNoqfOgZepHQ9-v7pjR2EmkYSdVCkw6bkqCkUv-IPbuAVhT16fbUQQOe57Z7dc0T0zajVMBUv5qTbIe79Jeht-Y4XQWn2xhWMz/s1600/RFB+Day+1-2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEcvcqkDM2-m9PFBDy9NBdzlMEfNeq6K0oOvLbABXfoUkNoqfOgZepHQ9-v7pjR2EmkYSdVCkw6bkqCkUv-IPbuAVhT16fbUQQOe57Z7dc0T0zajVMBUv5qTbIe79Jeht-Y4XQWn2xhWMz/s320/RFB+Day+1-2.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebekah has come from an extremely medical fragile trisomy 18 infant...</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUVdKPQIBDJ_BJH5YzBWJha-ZkMicBeqN-ng5c6APcky11mP7BDdp0Hq-7mky5y13DlTD3nB47VqHijv37ks6t0BzDLduYrFbf7AA74PwZX3VAdHY3qAKLHOzsyxMP5NYsyBEWojUtIc97/s1600/IMG_0659.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUVdKPQIBDJ_BJH5YzBWJha-ZkMicBeqN-ng5c6APcky11mP7BDdp0Hq-7mky5y13DlTD3nB47VqHijv37ks6t0BzDLduYrFbf7AA74PwZX3VAdHY3qAKLHOzsyxMP5NYsyBEWojUtIc97/s320/IMG_0659.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">...to an incredible little girl that cannot be defined by a label.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcEzaXiEy3S_zFe02shp43UlXALB5LJLgFsdCMqPtMjTnpVGn73-aTUt6KpFPaKLkzLrluMI8LYkTBTyddywQwjpFwnbDGRW-u-fgZ-2v8D8FzPNfsqtM6k27o78gIlo1ZPbhxPPdVPq6/s1600/RFB+March+Awareness.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgcEzaXiEy3S_zFe02shp43UlXALB5LJLgFsdCMqPtMjTnpVGn73-aTUt6KpFPaKLkzLrluMI8LYkTBTyddywQwjpFwnbDGRW-u-fgZ-2v8D8FzPNfsqtM6k27o78gIlo1ZPbhxPPdVPq6/s320/RFB+March+Awareness.jpg" width="319" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There IS HOPE for TRISOMY!!</td></tr>
</tbody></table>
<div>
<span style="font-size: x-small;">Here are some sources of HOPE for Trisomy kids...</span></div>
<div>
<ul>
<li><span style="font-size: x-small;"><a href="http://www.hopefortrisomy13and18.org/index.php/en/trisomy-children/inspirational-stories" target="_blank">Click here to read Stories of Hope for Trisomy</a>.</span></li>
<li><span style="font-size: x-small;"><a href="http://pediatrics.aappublications.org/content/early/2012/07/18/peds.2012-0151.abstract" style="font-family: inherit;" target="_blank">The Experience of Families With Children With Trisomy 13 and 18 in Social Networks</a> - <span style="background-color: white; line-height: 18px; text-indent: -24px;"><span style="font-family: inherit;">Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life. MUST HAVE ARTICLE FOR PREGNANT MOMS TO GIVE TO THEIR DOCTORS AND FOR ALL TRISOMY FAMILIES TO SHARE WITH THEIR DOCTORS/SPECIALISTS.</span></span></span></li>
<li><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3372784/" style="font-family: inherit;" target="_blank"><span style="font-size: x-small;">Better Prognosis in Newborns with Trisomy 13 Who Received Intensive Treatments: A Retrospective Study of 16 Patients</span></a></li>
<li><a href="http://www.ncbi.nlm.nih.gov/pubmed/21205409" target="_blank"><span style="font-size: x-small;">Outcomes of Cardiac Surgery in Trisomy 18 Patients</span></a></li>
<li><span style="font-size: x-small;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/21590470" target="_blank">Pediatric Sub-specialist Controversies in the Treatment of Congenital Heart Disease in Trisomy 13 or 18</a> - <span style="background-color: white; line-height: 16px; text-indent: -24px;"><span style="font-family: inherit;">"Cardiologists were more likely than geneticists or neonatologists to recommend intervention on all heart lesions other than single ventricle palliation which no specialists recommended. Parental wishes that "everything be done" significantly influenced all specialists' recommendations." Empowered parents is a HUGE factor in surgical interventions. Nothing will happen without it! Don't wait for your doctors to okay surgery - you need to be your child's advocate. Given the data, if you do a few calculations, you will find that 850 doctors were involved in over 900 cardiac surgeries on Trisomy 13/18!! And the doctors that responded only represent 1/3 of those who could have responded. WOW!</span></span></span></li>
</ul>
<div>
<br /></div>
</div>
buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com6tag:blogger.com,1999:blog-8557072495696273091.post-48995641327058683512013-03-12T20:33:00.003-04:002013-03-12T20:33:42.880-04:00On the 12th Day of Trisomy Awareness...Structural Abnormalities!<h2>
<span style="font-family: inherit;"><span style="background-color: white; line-height: 18px;">DAY 12: </span></span></h2>
<span style="font-family: inherit;"><span style="background-color: white; line-height: 18px;">On our 12th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share in more detail about STRUCTURAL ABNORMALITIES. This means that the chromosome's structure is altered, and this can come in several forms such as deletions, dupl</span><span class="text_exposed_show" style="background-color: white; display: inline; line-height: 18px;">ications, translocations, inversions, insertions, and rings. </span></span><br />
<br />
<ul>
<li><span style="background-color: white; font-family: inherit; line-height: 18px;">DELETION is when a portion of the chromosome is missing or deleted. Known disorders in humans include Wolf-Hirschhorn syndrome, which is caused by partial deletion of the short arm of chromosome 4. Jacobsen syndrome is also called the terminal 11q deletion disorder. </span></li>
<li><span style="background-color: white; font-family: inherit; line-height: 18px;">DUPLICATION is when a portion of the chromosome is duplicated, resulting in extra genetic material. Known human disorders include Charcot-Marie-Tooth disease type 1A which may be caused by duplication of the gene encoding peripheral myelin protein 22 (PMP22) on chromosome 17. </span></li>
<li><span style="background-color: white; font-family: inherit; line-height: 18px;">TRANSLOCATION is when a portion of one chromosome is transferred to another chromosome. There are two main types of translocations; Reciprocal translocation is when segments from two different chromosomes have been exchanged, and Robertsonian translocation is when an entire chromosome has attached to another at the centromere - in humans these only occur with chromosome 13, 14, 15, 21 and 22. </span></li>
<li><span style="background-color: white; font-family: inherit; line-height: 18px;">INVERSION is when a portion of the chromosome has broken off, turned upside down and reattached, therefore the genetic material is inverted. </span></li>
<li><span style="background-color: white; font-family: inherit; line-height: 18px;">INSERTION is when a portion of one chromosome has been deleted from its normal place and inserted into another chromosome. </span></li>
<li><span style="background-color: white; font-family: inherit; line-height: 18px;">RING is when a portion of a chromosome has broken off and formed a circle or ring. This can happen with or without loss of genetic material. </span></li>
</ul>
<br />
<span style="font-family: inherit;"><span class="text_exposed_show" style="background-color: white; display: inline; line-height: 18px;"><br /></span></span>
<span style="font-family: inherit;"><span class="text_exposed_show" style="background-color: white; display: inline; line-height: 18px;">The sample picture attached shows an example of how these structural abnormalities compare to the normal. Share because you Care ♥</span></span><br />
<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br /></span>
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<a href="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/c45.0.403.403/p403x403/556901_350783755021735_1161798507_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="228" src="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/c45.0.403.403/p403x403/556901_350783755021735_1161798507_n.jpg" width="320" /></a></div>
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Visit <a href="https://www.facebook.com/HopeForTrisomy13and18" target="_blank">Hope for Trisomy on Facebook</a> for more interesting facts about chromosomes and trisomy!</div>
<br />buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-50294302348022926802013-03-11T21:28:00.000-04:002013-03-11T21:28:37.951-04:00Chromosome Craziness - Centromeres, Structural & Numerical AbnormalitiesBe sure to follow <a href="https://www.facebook.com/HopeForTrisomy13and18" target="_blank">Hope for Trisomy on Facebook</a> to get a fun fact all through the month! We are always posting stories, news link, uplifting thoughts... So you'll want to come "like" us! <br />
<br />
<h2>
DAY 8:</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 8th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share why the CENTROMERE is so important in the structure of a chromosome. The centromere divides the chromosome into the short and long arms. The centromere is usuall</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">y not located exactly in the center of the chromosome, and in some cases, is located almost at the chromosome's end. The centromere is important particularly during mitosis (which is the process where a single cell divides resulting in generally two identical cells, each containing the same number of chromosomes and genetic content as that of the original cell). When the centromere is not functioning properly, the chromatids do not align and separate properly, thus, resulting in the wrong number of chromosomes in the daughter cells. This is when we see conditions such as Down syndrome (Trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (Trisomy 13). Share because you Care. ♥</span><br />
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<a href="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/598722_349473585152752_1820874657_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="256" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/598722_349473585152752_1820874657_n.jpg" width="320" /></a></div>
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<br />
<h2>
DAY 9:</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 9th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share some history about chromosomes. Did you know that before the chromosomes could be precisely identified they were placed in seven groups? A (chromosomes 1–3), B (chromosomes 4–5), C (chromosomes 6–12 and X), D (chromosomes 13–15), E (chromosomes 16–18), F (chromosomes 19–20), and G (chromosomes 21–22 and Y) ♥ Share because you Care</span><br />
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<a href="https://sphotos-b.xx.fbcdn.net/hphotos-ash4/487622_349898321776945_705436817_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="272" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash4/487622_349898321776945_705436817_n.jpg" width="320" /></a></div>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br /></span>
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<h2>
DAY 10:</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 10th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about chromosome abnormalities. Although there are many types of chromosome abnormalities, they can be organized into two basic groups; NUMERICAL and STRUCTURAL ABNORMALITIES. A NUMERICAL ABNORMALITY is when an individual is missing either a chromosome from a pair (monosomy) or has more than two chromosomes of a pair (</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">trisomy). An example of a condition caused by numerical abnormalities is Down Syndrome, also known as Trisomy 21 (an individual with Down Syndrome has three copies of chromosome 21, rather than two). Turner Syndrome is an example of monosomy, where the individual - in this case a female - is born with only one sex chromosome, an X. A STRUCTURAL ABNORMALITY is when the chromosome's structure is altered, such as in deletions, duplications, translocations, inversions, and rings. Most chromosome abnormalities occur as an accident in the egg or sperm. Therefore, the abnormality is present in every cell of the body. Some abnormalities, however, can happen after conception, resulting in mosaicism, where some cells have the abnormality and some do not. Share because you Care. ♥</span><br />
<br />
<h2>
DAY 11:</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 11th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little bit more about NUMERICAL ABNORMALITIES. A numerical abnormality is also referred to as an ANEUPLOIDY (an abnormal number of chromosomes). The 4 common categories of aneuploidy are; Nullisomy, Monosomy, Trisomy, and Tetrasomy. NULLISOMY is when a chromosome is missing altogether. Generally, embryos that are nul</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">lisomic don't survive to be born. MONOSOMY is when an individual is missing a chromosome from a pair. TRISOMY is when one extra copy of a chromosome is present. TETRASOMY is when four total copies of a chromosome are present. Tetrasomy is extremely rare. Chromosomal abnormalities, in the form of aneuploidy, are very common among humans. Roughly 8 percent of all conceptions are aneuploid, and it's estimated that up to half of all miscarriages are due to some form of chromosome disorder. Share because you Care. ♥</span>buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-7870802624186122642013-03-07T19:39:00.002-05:002013-03-07T19:40:50.408-05:00Keep on MARCHing into Trisomy Awareness...Lots of awareness brought to you through days 6& 7!<br />
<h2>
<a href="https://www.facebook.com/HopeForTrisomy13and18" target="_blank">DAY 6 SHARE</a>:</h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">Trisomy Awareness - Day 6 </span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">Trisomy isn't the only condition discriminated against. Today people are united worldwide to help raise awareness about the negative impact of labels. While we may deal "incompatible with life", many people labele</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">d with the "r" word are facing a similar discrimination in their community, in the workplace, at school, etc. So commit today to not only raise awareness about TRISOMY, but commit to SPREAD THE WORD TO END THE WORD.</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">Language affects attitudes. Attitudes impact actions.</span><a data-hovercard="/ajax/hovercard/page.php?id=10331123781&extragetparams=%7B%22group_id%22%3A0%7D" href="https://www.facebook.com/SpecialOlympics?group_id=0" style="background-color: white; color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px; text-decoration: none;">Special Olympics</a><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;"> and </span><a data-hovercard="/ajax/hovercard/page.php?id=22902828717&extragetparams=%7B%22group_id%22%3A0%7D" href="https://www.facebook.com/bestbuddies?group_id=0" style="background-color: white; color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px; text-decoration: none;">Best Buddies International</a> <span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">encourage people all over the world to pledge now to use respectful language at </span><a href="http://www.r-word.org/" rel="nofollow nofollow" style="background-color: white; color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;" target="_blank">www.R-word.org</a><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;"> and build communities of respect and inclusion for all people.</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">Language affects attitudes. Attitudes impact actions. </span><a data-hovercard="/ajax/hovercard/page.php?id=10331123781&extragetparams=%7B%22group_id%22%3A0%7D" href="https://www.facebook.com/SpecialOlympics?group_id=0" style="background-color: white; color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px; text-decoration: none;">Special Olympics</a><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;"> and </span><a data-hovercard="/ajax/hovercard/page.php?id=22902828717&extragetparams=%7B%22group_id%22%3A0%7D" href="https://www.facebook.com/bestbuddies?group_id=0" style="background-color: white; color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px; text-decoration: none;">Best Buddies International</a> <span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">encourage people all over the world to pledge now to use respectful language at </span><a href="http://www.r-word.org/" rel="nofollow nofollow" style="background-color: white; color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;" target="_blank">www.R-word.org</a><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;"> and build communities of respect and inclusion for all people.</span><br />
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From <a href="https://www.facebook.com/EndtheWord" target="_blank">Spread the Word to End the Word</a>:</div>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">On Wednesday, March 6, people around the world will unite their communities to </span><a data-hovercard="/ajax/hovercard/page.php?id=60375161156&extragetparams=%7B%22group_id%22%3A0%7D" href="https://www.facebook.com/EndtheWord?group_id=0" style="background-color: white; color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px; text-decoration: none;">Spread the Word to End the Word</a><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">®, as supporters participate in the 5th annual ‘Spread the Word to End the Word’ awareness day, aimed at ending the hurtful use of the R-word (“retard(ed)”) negatively impacting people with intellectual and developmental disabilities (IDD).</span><br />
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;"><b><u>Trisomy 6:</u></b> Meet William who has Partial Trisomy 6p. <a href="https://www.facebook.com/photo.php?fbid=533181016722694&set=a.533180946722701.1073741826.468551573185639" target="_blank">Follow the link for the story</a>!</span></div>
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<a href="https://www.facebook.com/photo.php?fbid=349185861848191&set=a.188356861264426.29939.187729741327138" target="_blank">DAY 7 SHARE</a>: </h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">On our 7th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little more about chromosomes. Our chromosomes carry our genes, the basic units of heredity. Our genes are made up of DNA. There are approximately 30,000 genes</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;"> that influence our growth and development. Each gene occupies a specific location on a chromosome. With the exception of the X and Y chromosomes, there are two copies of each chromosome and therefore two copies of each gene. When a mistake or an alteration occurs in one or more of our genes our body does not develop properly, and this can lead to a genetic disease. Share because you Care. ♥</span><br />
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<span style="color: #333333; font-family: lucida grande, tahoma, verdana, arial, sans-serif;"><span style="line-height: 18px;"><b><u>Trisomy 7:</u></b> Meet </span></span><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 18px;">Rachel who is 27 years old with Partial Trisomy 7. <a href="https://www.facebook.com/photo.php?fbid=533566926684103&set=a.533180946722701.1073741826.468551573185639" target="_blank">Follow the link for the story</a>!</span><br />
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<br />Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-44189473332484762392013-03-06T07:10:00.000-05:002013-03-07T19:46:45.096-05:00Trisomy Tea - Raising Awareness One Cup at a Time<h2>
<a href="https://www.facebook.com/TrisomyTea" target="_blank">Trisomy Tea</a></h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">A very special friend, Cindy Chamberlin, is running a very simple fundraiser that I would encourage everyone to consider joining, and it will only cost you $5! Here is her message:</span><br />
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Well I can’t WAIT any more! March is Trisomy Awareness Month. In honor of our daughter, Jordan Elizabeth Chamberlin, I will be having a fund raiser to support Hope for Trisomy, Now I Lay Me Down to Sleep, and our local families that have ex</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">perienced a loss by selling “Tea Cups”.<br />Each Tea Cup is $5.00 (see picture below) and includes a special bag of tea. They can be mailed within the US for an additional 46 cents (and of course can be picked up/dropped off locally). Message me if you live out of the US and we can work something out!!!!<br />Because Jordan had Trisomy 18; $3.18 of each cup sold will go to Hope for Trisomy, $1.00 to NILMDTS, and the rest to stay locally in the hopes of having a larger ceremony on October 15 (National Pregnancy and Infant Loss Day). I can accept cash, check, and paypal. Let me know if you have any questions. My goal is to sell at least 200! I’m so excited to raise awareness and continue to celebrate what Jordan means to us!!! Thank you for your help and support!</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Each Tea Cup is $5.00 (see picture below) and includes a special bag of tea. They can be mailed within the US for an additional 46 cents (and of course can be picked up/dropped off locally). Message me if you live out of the US and we can work something out!!!!</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Because Jordan had Trisomy 18; $3.18 of each cup sold will go to Hope for Trisomy, $1.00 to NILMDTS, and the rest to stay locally in the hopes of having a larger ceremony on October 15 (National Pregnancy and Infant Loss Day). I can accept cash, check, and paypal. Let me know if you have any questions. My goal is to sell at least 200! I’m so excited to raise awareness and continue to celebrate what Jordan means to us!!! Thank you for your help and support!</span></blockquote>
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<tr><td class="tr-caption" style="text-align: center;">This is what the Trisomy Tea awareness "tea cup" looks like. To order a tea cup, please send a donation (or order request to receive a pre-order invoice) of $5.46 for each cup to the following paypal account: <b><i><a href="mailto:cynster@suddenlink.net">cynster@suddenlink.net</a></i></b>. Provide your total tea cup order and your mailing address. $3.18 goes to Hope for Trisomy, $1 to NILMDTS, $.82 to a local WV effort for National Pregnancy and Infant Loss Day on 10/15, and $.46 for shipping costs. Thank you for your support! </td></tr>
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<tr><td style="text-align: center;"><a href="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/535562_537362922952343_1647223819_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/535562_537362922952343_1647223819_n.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is Jordan's Gemma's Bear from Hope for Trisomy. <b><i><u>Your donation to Trisomy Tea helps us fund Hope for Trisomy's Gemma and Payton bear gifts to families facing a trisomy diagnosis or a milestone birthday</u></i></b>. We receive heart-warming comments from families that receive our bears. For more information about the bear programs, please see <a href="http://hopefortrisomy.org/">hopefortrisomy.org</a>.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cindy and her beautiful Jordan.</td></tr>
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Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-24231319913598197382013-03-06T07:09:00.001-05:002013-03-06T07:09:21.103-05:00Getting Down With Chromosomes<br />
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<a href="https://www.facebook.com/photo.php?fbid=347959645304146&set=a.188356861264426.29939.18772974132713" target="_blank">Day 4 Share</a>: </h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 4th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share an interesting FACT about chromosomes. We all have learned that Trisomy is a chromosome disorder, but does everyone know what a chromosome is? A chromosome is a threadlike strand of DNA in the cell nucleus that carries the genes in a linear order. Each chromosome carries genes that contain the hereditary material that c</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">ontrols the growth and characteristics of the body. There are 46 chromosomes in each human cell organized in 23 pairs, of which 22 pairs are similar in appearance but differ at the molecular level. Here is the interesting fact; the chromosomes are designated by a number beginning with chromosome 1 being the longest, followed by chromosome 2, etc. So as the numbers get higher, the chromosome gets smaller as you can see in the sample picture. Share because you Care. ♥</span><br />
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<a href="https://www.facebook.com/photo.php?fbid=348405738592870&set=a.188356861264426.29939.187729741327138" target="_blank">Day 5 Share</a>: </h2>
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On our 5th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share a little more about chromosomes. Did you know that a chromosome has ARMS? Well...it does. All human chromosomes have 2 arms -- a short arm and a long arm -- that </span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">are separated from each other only by the centromere, the point at which the chromosome is attached to the spindle during cell division. The short arm is termed the "p arm" while the long arm of the chromosome is termed the "q arm." The symbol "p" was chosen to designate the short arm because "p" stands for "petit", "small" in French. The letter "q" was selected to signify the long arm merely because "q" is the next letter in the alphabet. Share because you Care. ♥</span><br />
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buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-60343650163112030842013-03-03T23:58:00.000-05:002013-03-03T23:58:03.445-05:00Trisomy Awareness - SHARE because you CARE!<br />
The following tidbits of information for Trisomy Awareness month are brought to you by a passionate trisomy mom and friend, Alisha, who is part of the <a href="http://www.hopefortrisomy13and18.org/" target="_blank">Hope for Trisomy organization</a>. <a href="https://www.facebook.com/HopeForTrisomy13and18" target="_blank">Visit our Facebook page</a> to keep up with a month of facts, fun and inspiration!<br />
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<tr><td class="tr-caption" style="text-align: center;">This is Alisha with her full trisomy 18 son, Lane, who is 4 years old.</td></tr>
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">3/1/13: Today is the beginning of a very special month for us! Why you ask? It's the 3rd month of the year and so we celebrate MARCH as TRISOMY AWARENESS MONTH...with "tri" defined as, in intervals of 3. We will be bringing awareness to TRISOMY because awareness is the first step to education, and we will be educating by starting with the basics. When a child is born with a 3rd copy of a chromosome, then they have been born with a TRISOMY syndrome. When we are born, we all receive 23 chromosomes from each of our parents totaling 46 chromosomes. Your father's DNA decides what sex you will be on the 23rd chromosome he has given you. A TRISOMY syndrome can be made on any of the 23 chromosomes present in the body, which will then make the genetic makeup total 47 chromosomes. ♥ (</span>I posted Day 1 on my last post, but I didn't want it to get lost. ;-)<br />
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">3/2/13: On our 2nd day of MARCHING into TRISOMY AWARENESS MONTH, we are going to learn who is more likely to become pregnant with a child diagnosed with Trisomy. Can you guess? Well...the answer is, any female who can become pregnant! Trisomy DOES NOT discriminate! Trisomy doesn't care what age you are (although there is a higher risk in women older than 40), what ethnic group, what demographic location, or how much money you make! Trisomy can happen to you, a family member, or a friend! Please help us in bringing awareness to the WORLD. SHARE because you CARE. ♥</span><br />
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">3/3/13: On our 3rd day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share the 3 different types of TRISOMY. The 3 different types being FULL, MOSAIC, and PARTIAL. The most common type is FULL Trisomy, and this means the extra chromosome occurs in every cell of the body. This type of Trisomy is not hereditary. MOSAIC Trisomy occurs when the extra chromosome is present in some (but not all) of </span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">the cells of the body. Like Full Trisomy, Mosaic Trisomy is not inherited and is a random occurrence that takes place during cell division. PARTIAL Trisomy occurs when only "part" of an extra chromosome is present. Some Partial Trisomy syndromes may be caused by hereditary factors. It is important to note...while there are different types of Trisomy, this does not mean one is better for a child than another. With each type, there is a wide spectrum of severity. It is hard to say how the extra chromosome will impact an individual child from the genetic diagnosis alone. Share because you Care. ♥</span><br />
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<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><span style="font-size: 15.199999809265137px; line-height: 20px;"><a href="http://www.hopefortrisomy13and18.org/index.php/en/trisomy-children/inspirational-stories" target="_blank">Check out these Inspirational Trisomy Kids Stories brought to you by Hope for Trisomy</a>.</span></span><br />
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<span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><span style="font-size: 15.199999809265137px; line-height: 20px;"><br /></span></span>Anonymoushttp://www.blogger.com/profile/10979947165645822363noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-52963144650892776782013-03-01T19:00:00.000-05:002013-03-04T09:47:11.975-05:00Trisomy Awareness SharesLet's make this month a successful one for raising Trisomy Awareness! Here are some photos to share and some information to pass along about trisomy. Sharing a tidbit of information about trisomy from <a href="https://www.facebook.com/HopeForTrisomy13and18" target="_blank">Hope for Trisomy's facebook page</a>. Visit daily this month for more information about trisomy!<br />
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Today is the beginning of a very special month for us! Why you ask? It's the 3rd month of the year and so we celebrate MARCH as TRISOMY AWARENESS MONTH...with "tri" defined as, in intervals of 3. We will be bringing awareness to TRISOMY because awareness is the first step to education, and we will be educating by starting with the basics. When a child is born with a 3rd copy of a chromosome, then </span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">they have been born with a TRISOMY syndrome. When we are born, we all receive 23 chromosomes from each of our parents totaling 46 chromosomes. Your father's DNA decides what sex you will be on the 23rd chromosome he has given you. A TRISOMY syndrome can be made on any of the 23 chromosomes present in the body, which will then make the genetic makeup total 47 chromosomes. ♥</span></blockquote>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/881941_10151458406819726_554432748_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="145" src="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/881941_10151458406819726_554432748_o.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">This is a facebook-sized banner made by a friend of mine who lost her T18 daughter. The footprints are her much-loved and much-missed Ellie Cushman. If you cannot resize this for facebook, pull the photo off of Rebekah's facebook banner: <a href="http://www.facebook.com/rebekah.budd">http://www.facebook.com/rebekah.budd</a></td></tr>
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<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/886521_571341739544918_1461536531_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="160" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/886521_571341739544918_1461536531_o.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Boy version of the banner.</td></tr>
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<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/421480_571351349543957_1558676947_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="195" src="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/421480_571351349543957_1558676947_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Facebook Trisomy Awareness profile pic for girls</td></tr>
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<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/150443_571351296210629_270478659_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="195" src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/150443_571351296210629_270478659_n.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Facebook Trisomy Awareness profile pic for boys</td></tr>
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<a href="http://www.blogger.com/"></a><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/480675_10151458517239726_1560144154_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/480675_10151458517239726_1560144154_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;"><span style="background-color: white; color: #333333; font-size: 13px; line-height: 18px; text-align: left;">Please feel free to share Rebekah's photo, story, and information below in support of Trisomy Awareness month!</span></span><span style="font-family: inherit;"><br style="background-color: white; color: #333333; font-size: 13px; line-height: 18px; text-align: left;" /></span><span style="font-family: inherit;"><span style="background-color: white; color: #333333; font-size: 13px; line-height: 18px; text-align: left;">March is Trisomy Awareness Month. Trisomy is a genetic condition in which there is an extra chromosome in every cell. Down syndrome is trisomy 21. Many rare trisomies are deemed "incompatible" such as Rebekah's Trisomy 18. However, she is showing that she is, indeed, compatible with life. Many trisomy children are abort</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-size: 13px; line-height: 18px; text-align: left;">ed or denied life-saving medical interventions. Even with Down Syndrome the abortion rate is >90%. We want people to know that these children are loved and deserve a chance, because every life has value!<br /><br />Rebekah's Blog: <a href="http://buddzoo.blogspot.com/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://<wbr></wbr><span class="word_break" style="display: inline-block;"></span>buddzoo.blogspot.com/</a><br />Rebekah's Facebook Page: <a href="http://www.facebook.com/rebekah.budd" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://www.facebook.com/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>rebekah.budd</a><br />Hope for Trisomy: <a href="http://www.hopefortrisomy.org/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://<wbr></wbr><span class="word_break" style="display: inline-block;"></span>www.hopefortrisomy.org/</a><br />HFT on Facebook: <a href="https://www.facebook.com/HopeForTrisomy13and18" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">https://www.facebook.com/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>HopeForTrisomy13and18</a><br /><br />Do you have a trisomy story to share? Post it to Hope for Trisomy and we will add it to our facebook Tri-kids and blog!</span></span><span style="font-family: inherit;"><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-size: 13px; line-height: 18px; text-align: left;"><br /></span></span><span style="font-family: inherit;"><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-size: 13px; line-height: 18px; text-align: left;">Rebekah's Blog: <a href="http://buddzoo.blogspot.com/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://<wbr></wbr><span class="word_break" style="display: inline-block;"></span>buddzoo.blogspot.com/</a></span></span><span style="font-family: inherit;"><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-size: 13px; line-height: 18px; text-align: left;">Rebekah's Facebook Page: <a href="http://www.facebook.com/rebekah.budd" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://www.facebook.com/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>rebekah.budd</a></span></span><span style="font-family: inherit;"><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-size: 13px; line-height: 18px; text-align: left;">Hope for Trisomy: <a href="http://www.hopefortrisomy.org/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://<wbr></wbr><span class="word_break" style="display: inline-block;"></span>www.hopefortrisomy.org/</a></span></span><span style="font-family: inherit;"><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-size: 13px; line-height: 18px; text-align: left;">HFT on Facebook: <a href="https://www.facebook.com/HopeForTrisomy13and18" rel="nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">https://www.facebook.com/<wbr></wbr><span class="word_break" style="display: inline-block;"></span>HopeForTrisomy13and18</a></span></span><span style="font-family: inherit;"><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-size: 13px; line-height: 18px; text-align: left;"><br /></span></span><span style="font-family: inherit;"><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-size: 13px; line-height: 18px; text-align: left;">Do you have a trisomy story to share? Post it to Hope for Trisomy and we will add it to our facebook Tri-kids and blog!</span></span></td></tr>
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<tr><td style="text-align: center;"><a href="https://sphotos-a.xx.fbcdn.net/hphotos-snc6/255449_283338661766245_1239576062_n.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://sphotos-a.xx.fbcdn.net/hphotos-snc6/255449_283338661766245_1239576062_n.png" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Feel free to replace you facebook photo with this one in honor of Trisomy Awareness Month!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBcZgXxxV97txmH36LALPB5xe8UNkHvrsTuDIu-sd7d5leBT4q16Mu_tMACDQoNHV2V-4f_y3rOaX9HR21vUAyBxorumKradv6rSKDQHHwlHGHpDTD_ErRAoudAChKKBqRv0rnI3Joj-qP/s1600/HFT+Parental+Thinking.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBcZgXxxV97txmH36LALPB5xe8UNkHvrsTuDIu-sd7d5leBT4q16Mu_tMACDQoNHV2V-4f_y3rOaX9HR21vUAyBxorumKradv6rSKDQHHwlHGHpDTD_ErRAoudAChKKBqRv0rnI3Joj-qP/s400/HFT+Parental+Thinking.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Let the world know that what the medical community calls "incompatible" and "futile" is met with a different definition by those who love and care for their trisomy miracles. Please feel free to share! A larger version is available at Hope for Trisomy's facebook page photos, along with word art for Conventional Thinking and Balanced Approach.</td></tr>
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The following 4 posters were designed and offered freely by <a href="https://www.facebook.com/evasgift" target="_blank">Eva's Gifts</a>. You can visit her page to order them already made or to download a higher res copy. There is one for Joy, Life, Love and Hope - all featuring different trisomy children and one word their family chose to describe each one. Truly a beautiful project! If you visit her page, there is also a link to a picbadge awareness ribbon and some other banners.</div>
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buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com0tag:blogger.com,1999:blog-8557072495696273091.post-53090231436215192572013-03-01T08:29:00.001-05:002013-03-01T08:34:49.959-05:00Trisomy Awareness Month - Covert Medical Futility PoliciesMarch is Trisomy Awareness Month. Because many of the rare trisomies are still considered "incompatible" and "futile" despite the growing number of "survivors", I wanted to kick off the month by highlighting a family who has helped raise awareness of covert medical futility policies. These policies exist in most hospitals and few states have laws that require disclosure. They result in passive euthanasia that is accepted by the medical community. It is not acceptable or reasonable to the grieving parents who have lost children due to these policies.<br />
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<a href="http://buddzoo.blogspot.com/2012/04/medical-futility.html" target="_blank">Back in April of 2012, I posted about the Kelletts' journey with their much loved and missed son, Peter</a>. Peter had full trisomy 18 and was doing well despite the condition. But the Kellett's 6 year old son died after an appendectomy. An independent autopsy proved that the hospital's "cause of death" was not true and his death could most likely have been prevented. Or was it... encouraged / induced / precipitated? He was most likely subjected to covert medical futility policies that put the power and decision-making solely into the doctor's hands as they allowed him to die by internal bleeding even when the family voiced their concerns about this possibility. Their journey led Mary Kellett on a mission to have medical futility policies disclosed.<br />
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In addition to Mary's efforts to change MN laws and make futility policies public knowledge, their story is now being publicized. There are efforts going on in other states as well to make it illegal for hospitals to withhold information about their Medical Futility Policies from families.<br />
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<ul>
<li><a href="http://www.ahherald.com/columns-mainmenu-28/disabilities-week/14931-peter-kellett-and-trisomy-18-part-one" target="_blank">Peter Kellett and Trisomy 18: Part I</a> - excerpt from the article<br /><span style="background-color: white; font-family: inherit;">"The doctor said infection from appendicitis had strained Peter's heart to cause death. But the Kelletts weren't believing him. They ordered an independent autopsy, which found no infection. Peter had internally bled to death."</span></li>
<li><a href="http://www.rocklintoday.com/news/templates/community_news.asp?articleid=11393&zoneid=4" target="_blank">Peter Kellett and Trisomy 18: Part II</a> - excerpt from the article<br />"She said, "All throughout Peter's life, from the beginning, the only help it seemed we got (from the medical profession) was to help him die. There was a huge difference between the way doctors treated Peter and the way they treated our other kids. It was like they couldn't see the value of his life. The doctor (at his birth) said Peter would never contribute to society. My argument has been that people with disabilities contribute to society in the most important way. They help us become better people. I call them 'teachers of our souls.'"If having known that particular hospital had adopted a futility of care policy, Kellett wouldn't have taken Peter there. She said parents had the right to know these policies existed.
She said, "I have a feeling what's behind (these futility of care policies) is saving money. There's a lot of passive euthanasia going on, especially involving kids with disabilities. We're still devastated over how Peter died." </li>
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<br /><span style="font-family: inherit;">Please become educated and aware of these issues that parents of trisomy children face regularly. It is</span><span style="font-family: inherit;">NOT okay to make death decisions based solely on a medical or genetic label and these practices need to stop. "Contribution to society" comes in many more forms than just working and paying taxes. Special needs children hold a very special place in this world - they teach us about our humanity, about unconditional love. To quote Mary Kellett, "I call them '<b>teachers of our souls</b>.'"</span><br />
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Visit the <a href="http://medicalfutility.blogspot.com/" target="_blank">Medical Futility Blog</a> for more information.<br />
Help support Mary Kellett's 501(c)(3) - <a href="http://www.prenatalpartnersforlife.org/" target="_blank">Prenatal Partners for Life</a>. They offer support and information to families who choose to carry to term a baby with an adverse prenatal diagnosis and support for raising a special needs child.<br />
<br />buddzoohttp://www.blogger.com/profile/06078657527276326106noreply@blogger.com0