tag:blogger.com,1999:blog-17815209826570817172024-03-13T00:00:11.612-04:00Life With Turner's SyndromeThis is just a blog about me and my life with Turner's Syndrome. It's also a place for other TS girls to come and connect.Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-1781520982657081717.post-49188709246394683982014-02-24T09:18:00.001-05:002014-02-24T09:18:18.303-05:00New website!Hi all,
I know; I haven't updated the blog in forever! I'm sure some of you have already heard the big news - freewebs.com/colleenjoyce is now colleenmjoyce.com. I am sooooo excited! I can't wait to continue working on it and doing whatever I can to make it better for you guys. Let me know if you have any suggestions or ideas. :)
My spring break is coming up soon, so I hope to get a lot of site updating done then. I should be able to get a couple videos for the YouTube page done too (check that out at www.youtube.com/colleenstspage).
If any of you would like to share your TS story here on the blog, please let me know. I'd be happy to help you out!
Much love,
ColleenColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-66957262934096332372013-08-16T17:22:00.000-04:002013-08-16T17:22:44.406-04:00New Video Posted Today! :)Hi everyone,
Earlier today I posted a new video on my FB page. I answered some questions that you guys had for me! The questions asked were about growth hormone shots and the mental/emotional aspects of having TS. Check it out below! :)
<div><embed src="http://www.onetruemedia.com/share_view_player?p=1268d3ed0492920f207f4d0&skin_id=3000"quality="high" scale="noscale" width="640" height="360" wmode="transparent" name="FLVPlayer" salign="LT" flashvars="&p=1268d3ed0492920f207f4d0&skin_id=3000&host=http://www.onetruemedia.com" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer"></embed><div style="margin:0px;font:12px/13px verdana,arial,sans-serif;line-height:20px;padding-bottom:15px;width:640px;text-align:center;"><a href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt5" target="_blank" style="text-decoration:none;">Make a video - it's fun, easy and free!<br/><span style="text-decoration:underline;">www.onetruemedia.com</span></a></div></div>Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com2tag:blogger.com,1999:blog-1781520982657081717.post-8678377686821059292013-07-08T19:46:00.000-04:002013-07-08T19:46:57.438-04:00Madeline Franklin Dean's Story Hey guys, I’m Madeline, and I guess I’m going to be sharing my experience with Turner Syndrome. When I was two months old I was rushed into open heart surgery to repair a coarctation of the aorta. It turns out this is an extremely common problem in girls with TS, but we didn't know that at the time. We visited doctors every now and then trying to figure out what had happened until I was 6, when I was finally diagnosed. I started taking growth hormone. Young kids are not that judgmental, and at that age everyone needs help reaching things, so the Turners didn't really affect my childhood besides a lot of extra doctors appointments. I stopped taking growth hormone for a little bit in middle school because of issues with our insurance company, but I started taking it again when I was fourteen. I am now growing at the same rate as average teenagers according to charts, but I’m still really short. At 16, I am 4'6. I enjoy being short most of the time, but it made getting a car really hard. We found the perfect convertible from the 70's, and though I had trouble reaching the petals I fell in love with it and named it Sophie. We got the petals adjusted and stuff but there’s only so much you can do to a 40 year old car, and it was not working. My dad told me one day I was getting his car, which was new and very adjustable, and we were selling Sophie. I have never hated having Turner Syndrome so much. It still makes me sad to think about it, but now I am just grateful that I am tall enough to drive at all. You have to focus on the blessings. When I was a kid they were sure I was going to need a second heart surgery during college, but now they don’t think I need it at all. I can’t have children, but I’m looking forward to adopting one day. I believe the trick is to not let the bumps in the road you get with TS affect your happiness. After all, short happens :)<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-jjuwwfCj_Xo/UdtO-69rYjI/AAAAAAAAAKc/Yk7MB55YTb8/s1600/1013736_519410448130779_17017639_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-jjuwwfCj_Xo/UdtO-69rYjI/AAAAAAAAAKc/Yk7MB55YTb8/s320/1013736_519410448130779_17017639_n.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-qMYIbXaiyAU/UdtPBEFfeQI/AAAAAAAAAKk/pLMs9kscDRs/s1600/1044280_519410541464103_1668138507_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-qMYIbXaiyAU/UdtPBEFfeQI/AAAAAAAAAKk/pLMs9kscDRs/s320/1044280_519410541464103_1668138507_n.jpg" /></a></div>Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com1tag:blogger.com,1999:blog-1781520982657081717.post-84924758498814391582013-06-21T21:07:00.000-04:002013-06-21T21:08:03.174-04:00...stopping by to say thank you!Hi everyone!
I know I haven't been on the blog in a while, so I thought I should check in and write again. First of all, I just wanted to thank you for all of your support. It does mean a lot, and I really appreciate it. I hope we can continue to work together to spread more awareness of TS!
<b>(From my FB Page earlier today):
Wow! I am blown away by the response to my post from earlier today! All I can say is that you guys are AWESOME! Thank you again for all of your support; it really does mean a lot to me. Please don't forget to continue to share my page and raise awareness of TS. We can do this together! #CTSP #turnerssyndromeawareness
Much love,
Colleen ♥ :)</b>
I promise that things on here will be updated very, very soon! Please keep an eye out. :)
xoxo - Colleen Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com2tag:blogger.com,1999:blog-1781520982657081717.post-5539150098099719102013-01-04T18:04:00.002-05:002013-01-04T18:04:47.746-05:00Happy New Year!Hi all!
Colleen here. I just wanted to write in and wish you all a happy new year. I hope your 2013 is off to a good start. Let's continue to try and raise awareness of TS. This is our year! =)
xoxoxo - CColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com2tag:blogger.com,1999:blog-1781520982657081717.post-7647005325015662052012-10-26T19:53:00.001-04:002012-10-26T19:53:18.396-04:00Keep checking in!Hey everybody,
I just wanted to write in and see how you all are doing. I hope you all are well. Also, I've got some new items/updates in the works for the site, so keep checking back. I promise, the wait will be worth it!
As always, if you have any ideas/comments/suggestions, please feel free to let me know. =)
P.S. - what's everybody doing for Halloween?
*CColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-64476793715637092952012-07-30T11:22:00.001-04:002012-07-30T11:22:32.360-04:00Happy TS Awareness Day!Today is TS Awareness Day. So, what will you be doing to spread awareness?Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-87065428509959225492012-06-27T10:52:00.000-04:002012-06-27T10:52:35.831-04:00Summer 2012!Hey everyone,
Summer 2012 is finally here! So, I'm going to be updating the sites more with new activites and ideas. I want to improve the site for you guys, and make it better. Please let me know if you have any ideas/suggestions. Thank you all so much! =)
*CColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com1tag:blogger.com,1999:blog-1781520982657081717.post-37190974206732512442012-02-23T13:17:00.000-05:002012-02-23T13:23:38.362-05:00Time to check in!Hello everyone,
I haven't been on here in a very long time. Sorry about that! It's hard for me to keep up, what with school and a bunch of other things goin on! I just came up with an idea to get this blog back up and running again. If anybody has any questions for me, please feel free to comment on this post with your Q and I'll try to answer as soon as I can. They can be TS related, or they can be about anything else you'd like to ask. Ready? Go!
*CColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com2tag:blogger.com,1999:blog-1781520982657081717.post-6427613085036935522011-12-18T09:55:00.002-05:002011-12-18T09:55:49.529-05:00New Project!from my facebook pages -
Hey, everyone....hope you're all doing well! I've just come up with a new little project, if you're interested. There are so many of you visiting the site everyday. I really do appreciate that! So, here's what I came up with. Why don't you all make a video or write a story about you or your daughter's life with Turner's Syndrome? I can put the videos together so that there's one video for everybody to see each other's stories. It would be posted here and to the home page of my site. The written stories can be put up on the Turner's Syndrome Angels site. If interested, please let me know how you plan on sending me the info. Thanks so much!
*CColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com1tag:blogger.com,1999:blog-1781520982657081717.post-12550778438958163912011-12-03T16:02:00.001-05:002011-12-03T16:08:41.343-05:00How has everyone been??!!Hey everyone,
Wow....I can't believe how long it's been since I've written. I've been very busy with a lot of things. Junior year of high school is crazy, my brother is now off at college, and I myself am beginning to look at colleges! On top of that, we all know 2011 is winding down.
I had a great year. I'm hoping to make 2012 another great one. I'm looking forward to having more little events and other different things for TS awareness. I hope everybody is doing well, and I'll be checking back here again soon. I promise! =)
*CColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-5073542334586112132011-08-13T20:17:00.003-04:002011-08-13T20:27:00.554-04:00Any ideas?<div>Ok, everyone!<br /><br />I wanted to thank you all again so much for your participation in my TS Awareness Day last month. I hope you all enjoyed!<br /><br />Well, it's got me thinking. I'd like to do something like that again, but I can't figure out what. I do understand that there are a lot of awareness days, so that's why I'm trying to think of something else.<br /><br />If you think you can come up with an idea for me, feel free to comment on this post and tell me what it is! =)<br /><br /><br />*C</div>Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-69174488709792097762011-06-23T16:43:00.005-04:002011-07-30T17:12:05.630-04:00Arielle Emerick and Corrin Graham<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-7s4gATOaiCQ/TguKQ9ZJliI/AAAAAAAAAGw/z0HBnY-fzX0/s1600/269041_239911939355106_100000089066944_1048529_8038217_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 238px;" src="http://2.bp.blogspot.com/-7s4gATOaiCQ/TguKQ9ZJliI/AAAAAAAAAGw/z0HBnY-fzX0/s320/269041_239911939355106_100000089066944_1048529_8038217_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5623740583664784930" /></a><br />(This is a picture of Corrin dressed for the pageant.)<br /><br /><br />This is a great story! Corrin Graham has a cousin with TS, Arielle Emerick. Well, Corrin was a contestant in a very cool pageant! So, with this, she is promoting awareness of TS for her cousin. Corrin's mom sent me this information:<br /><br />Corrin Graham , age 10 soon to be 5th grader at Wetumpka Middle School in Wetumpka,AL<br />She is the daughter of Mikel and Jennifer Graham of Wetumpka,AL.<br />She has one little brother (almost 4) named Mikel Carter.<br /><br />She loves the color blue. Loves to bake, tumble,rollerblade,swim and collect Disney Pins.<br /><br />Corrin's second cousin, Arielle Emerick, was recently diagnosed with Turner Syndrome. <br />They moved in 2010 from MI to Arkansas due to her dad's job relocating to Arkansas. She fell ill and <br />visited Arkansas Children's Hospital, where they later diagnosed that she has Turner Syndrome. Within days of the TS <br />diagnosis, Arielle underwent a heart transplant. Arielle is recovering from the heart surgery, but is still in isolation due<br />to set backs with slight rejection and other medical factors.<br /><br /><strong>Corrin was invited to participate in National American Miss Alabama Pre Teen 2011. She thought it would be a great way<br />to raise awareness in Arielle's honor. Corrin wanted others to learn more about the characteristics of TS so that <br />others would be able to get treatment earlier in their life.</strong><br /><br />Corrin was chosen as a featured NAM girl for examiner.com's national pageant daily.<br />Her mother, Jennifer, couldn't be more proud of her daughter's involvement to bring awareness to <br />a cause that is so close to her family's heart.<br /><br /><strong>Later on, Arielle's first cousin was diagnosed with TS as well. It is very rare to run in families. <br />Usually, it is a genetic fluke, but sometimes there is an omission of the "x" chromosome that <br />will manifest in certain generations.</strong><br /><br /><br />Well done, guys! Arielle seems like an amazing girl, and I'm glad to see something like this bringing a family closer. TS awareness is a very important thing to us all! =)<br /><br />If you would like to learn more, here are some links sent to me by Corrin's mom:<br /><br />DONATE TO TURNER SYNDROME<br />https://www.networkforgood.org/donation/ExpressDonation.aspx?ORGID2=411596910&vlrStratCode=Ma%2FXADeM%2FXWp9aRUCrDcU1sF3cHm32QJoP2FVTEiEwqHlB%2Bq9zCNIZO3auW9x2Ta<br /><br />DONATE TO ARIELLE EMERICK'S COTA <br />http://cotaforariellee.com/node/4/#Donate<br /><br /><br />national american miss<br />http://www.namiss.com/<br /><br /><br />Corrin's Examiner.com Article<br />http://www.examiner.com/pageant-in-national/alabama-pageant-hopeful-promotes-turner-syndrome-awareness#commentsColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com1tag:blogger.com,1999:blog-1781520982657081717.post-5618877013863853832011-06-23T15:26:00.002-04:002011-06-23T15:31:22.893-04:00TS Awareness Day - Friday, July 15th, 2011Hey everyone! <br /><br /><br />Just to let you all know,there will be a TS awareness day on Friday,July 15th,2011. It's through my website, Colleen's Turner's Syndrome Page. Let's get the word out about TS!<br /><br />Thanks =) <br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-4XodaJfoICQ/TgOUK8kEW0I/AAAAAAAAAGo/9Ov50Xcneig/s1600/tsawarenessday.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 266px;" src="http://1.bp.blogspot.com/-4XodaJfoICQ/TgOUK8kEW0I/AAAAAAAAAGo/9Ov50Xcneig/s320/tsawarenessday.png" border="0" alt=""id="BLOGGER_PHOTO_ID_5621499675665521474" /></a><br />Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-43934839068206685422011-05-19T15:34:00.003-04:002011-05-19T15:44:01.422-04:00Book Review - Born That Way Series by Susan Ketchen<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-8JGatrEWD_c/TdVy19EyFLI/AAAAAAAAAF8/1rxmcMMjWO0/s1600/btwb.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 148px; height: 200px;" src="http://1.bp.blogspot.com/-8JGatrEWD_c/TdVy19EyFLI/AAAAAAAAAF8/1rxmcMMjWO0/s320/btwb.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5608515182213076146" /></a><br />Hey everyone,<br /><br />I've just finished reading the books from Susan Ketchen. I think you all should try and get yourselves some copies!<br /><br /><br />Sylvia is the main character. As you've heard, she has Turner's Syndrome. This is one of the reasons why I think you should read the books. After I read them, I felt that I could totally relate to her! <br /><br /><br />These books are also not too long, and not too short. They're great for anyone to read. Trust me, once you pick it up, you won't put it down! The books also have a lot to do with horses. I became an even bigger horse fan than I was when I was younger. <br /><br />Overall, I really think these books are a <strong>must read</strong>! <br /><br />Order your copies on Susan Ketchen's website, www.susanketchen.ca!Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-27863507454886157642011-04-16T12:36:00.002-04:002011-04-16T12:41:51.286-04:00New mobile site!Hey everyone!<br /><br />I just thought I'd let you know that I've made a new mobile version of my site, Colleen's Turner's Syndrome Page.<br /><br /><br />So, it should be easier to view it on your Ipod, phone, or any other mobile device that may have internet. <br /><br /><br />Let me know what you think if you see it! =)<br /><br /><br />*CColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-66193556174714049952011-03-28T19:13:00.004-04:002011-03-28T19:45:25.743-04:00My Interview With Author Susan Ketchen!<div>Recently I found an author online , from Canada, that has a series of books involving a young girl with Turner's Syndrome. Her name is Susan Ketchen. I had an interview with her by email, and decided to share it here!<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-LTWJbVAYCzo/TZEabHrkHtI/AAAAAAAAAF0/e_F9UqUusew/s1600/btwb.jpg"><img style="margin: 0px auto 10px; width: 148px; height: 200px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5589277665764056786" border="0" alt="" src="http://4.bp.blogspot.com/-LTWJbVAYCzo/TZEabHrkHtI/AAAAAAAAAF0/e_F9UqUusew/s320/btwb.jpg" /></a><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-mME6p6wO_Hs/TZEaIlknWvI/AAAAAAAAAFs/UAaFAOApFnw/s1600/imagesCAX9XORI.jpg"><img style="margin: 0px auto 10px; width: 160px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5589277347370457842" border="0" alt="" src="http://1.bp.blogspot.com/-mME6p6wO_Hs/TZEaIlknWvI/AAAAAAAAAFs/UAaFAOApFnw/s320/imagesCAX9XORI.jpg" /></a><br /><br /><br /><br /><strong>Q - What inspired you to start writing <em>Born That Way</em>?</strong><br /><br /><em>A: I started this book when I was waiting for an editor's response to another manuscript. I knew I had 3 months to wait in the middle of winter, so I wanted to write something fast-paced and up-lifting. I wanted a main character who was young and energetic and optimistic about life. I started with not much more than the idea of a young girl being promised a horse when she grew as tall as her grandfather's shoulder (a situation I stole from my own childhood), and the story evolved from there.<br />While writing, I received ongoing inspiration from people (imagined or real) who refused to be daunted by obstacles.</em><br /><br /><br /><strong>Q - Did it take a while for you to come up with Sylvia's character?</strong><br /><br /><em>A: I had a strong sense of what Sylvia was like right from the very beginning. Occasionally I was distracted by what "I" might have done if faced with Sylvia's circumstances, but then a short reflection on her tenacious gentle spirit would set the story aright. </em><br /><br /><br /><strong>Q - You've said that as you began writing, you noticed Sylvia was unusually short. So, you decided to do some research and find a reason for that to put in your book. What was your first thought, when you found Turner's Syndrome? </strong><br /><br /><em>A: One of the first things that happened when I learned about Turner's Syndrome, was that I remembered what it was like for me when I was leaving childhood and entering puberty, and how ambivalent I was about "developing". I realized how much more complicated it would be for anyone with Turner's whose growth and development were uncertain. When I was young, I was going to develop whether I liked it or not. If I'd had obstacles? Or had to take medication? Or had choices? These were very interesting questions for me as a writer.<br /><br /><br />From an author's point of view, Turner's Syndrome gave me lots of scope to explore what happens to people who are perceived as being different by others, and to explore notions of gender.</em><br /><br /><br /><strong>Q - Can you relate anything in your life to anything in this series?</strong><br /><br /><em>A: I can relate several things in my life to things in the series, though the book is not about me, and Sylvia is not me.<br /><br /><br />Like Sylvia, however, I was born a horse nut.<br /><br /><br />I do remember feeling like I didn't fit in at school, and noticing how the popular kids negotiated difficult social situations. Some would use humor, others would be pushy. I really admired the kids who could brush off teasing with a joke, and tried to do the same myself, but usually couldn't think fast enough.</em><br /><br /><br /><strong>Q - Do you think other girls newly diagnosed with Turner's Syndrome would enjoy reading about Sylvia? </strong><br /><br /><em>A: Yes, I hope that other girls newly diagnosed with Turner's Syndrome would enjoy reading about Sylvia. Especially when we are newly diagnosed with one thing or another, there is a temptation to unnecessarily narrow our self-definitions. We become "a Turner's girl" or "an abuse survivor" or "a depressive". This never happened to Sylvia. Yes, she has Turner's Syndrome, but she is so much more than this. </em><br /><br /><br />You can find more about Susan and her books at www.susanketchen.ca!</div>Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-86682646435520979782011-03-20T13:16:00.005-04:002011-03-20T13:29:07.148-04:00Abbigail Sharron Paige FeatherstoneHere is Paige Featherstone's story about her daughter with TS. <br /><br /><br /><a href="http://1.bp.blogspot.com/--TRW90PT-nw/TYY48xGpqcI/AAAAAAAAAFc/nZXOm40ytpE/s1600/14127_390594216117_530276117_3921037_10585_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/--TRW90PT-nw/TYY48xGpqcI/AAAAAAAAAFc/nZXOm40ytpE/s320/14127_390594216117_530276117_3921037_10585_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5586215004424219074" /></a><br /><br /><br /><a href="http://4.bp.blogspot.com/-woIZTtP9_r8/TYY40_2QLJI/AAAAAAAAAFU/T0biLgc9PxE/s1600/45378_434025796117_530276117_5001317_1059178_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://4.bp.blogspot.com/-woIZTtP9_r8/TYY40_2QLJI/AAAAAAAAAFU/T0biLgc9PxE/s320/45378_434025796117_530276117_5001317_1059178_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5586214870943018130" /></a><br /><br /><br /><br /><a href="http://1.bp.blogspot.com/-A7LbOOi8JK4/TYY5GxyFqxI/AAAAAAAAAFk/G2yLBWfQY1s/s1600/197527_10150123688631118_530276117_6609155_7285075_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 267px; height: 320px;" src="http://1.bp.blogspot.com/-A7LbOOi8JK4/TYY5GxyFqxI/AAAAAAAAAFk/G2yLBWfQY1s/s320/197527_10150123688631118_530276117_6609155_7285075_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5586215176405101330" /></a><br /><br /><br /><br /> As a young mummy I've learned that health is the most important thing in life. At 16 years old I found out I was pregnant. I decided to take the responsibilities and bring my child up the best I could. At my 1st scan (13 weeks), I found out my little girl had a Cystic Hygroma measuring at 2.6cm x 3cm. At 14 weeks I had a CVS done and it came back my baby had turner syndrome and was a girl. I looked up on the internet about TS and decided to give my little girl a chance to live and choose her own fate. At 17 weeks Abbigail developed hydrops around her lungs, under her skin, around her heart and abdomen. I turned 17 years old in march 2010, At 20 weeks she then developed a heart problem where her left aorta was smaller than it should be. <br /><br /> At 22 weeks and 2 days I found out Abbigail had passed away. My world just ended! I had grown up so much for this brave little girl and she got taken away. I was a complete mess. At 22 weeks + 5 days on 22nd april 2010 I gave birth to Abbigail Sharron-Paige at 7:11 pm weighing 1lb 4oz. She was perfect the most beautifulest little girl I have ever seen in my whole life. I had to say hello and goodbye in the same day. It was awful; I just wanted her back. I had Abbigail blessed and spent 7hours with her. On 30th april 2010 I buried my 8 day old daughter, I was the one who carried her coffin to her grave; something every mummy doesn't want to do. 11 months on I take a day at a time and there isn't a day that goes by where I don't think about her. Health is the most important thing to me and I will never take anything for granted again; having a healthy baby means a lot and I think the more we spread the word of TS and hydrops the more people will realize what a healthy baby means. <br /><br />Rest in peace baby Abbigail xxxColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com2tag:blogger.com,1999:blog-1781520982657081717.post-35768025634681533252011-02-27T14:52:00.005-05:002011-02-28T14:44:52.416-05:00....Another Amazing TS Story!Recently, I've spoken with another mom about her daughter with TS. They have an amazing story! <br /><br /><br /><a href="http://3.bp.blogspot.com/-ix5bG3CqA8Y/TWqyHLI-kKI/AAAAAAAAAFM/IGSYvXpAiCU/s1600/164057_483343558923_771273923_6115238_2703248_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 224px;" src="http://3.bp.blogspot.com/-ix5bG3CqA8Y/TWqyHLI-kKI/AAAAAAAAAFM/IGSYvXpAiCU/s320/164057_483343558923_771273923_6115238_2703248_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5578466924771053730" /></a><br /><br /><br /><a href="http://3.bp.blogspot.com/-wlShKOQDgGk/TWqx_eQ5C0I/AAAAAAAAAFE/CsmyNwzRSRo/s1600/163022_470263953923_771273923_5871912_7224849_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="http://3.bp.blogspot.com/-wlShKOQDgGk/TWqx_eQ5C0I/AAAAAAAAAFE/CsmyNwzRSRo/s320/163022_470263953923_771273923_5871912_7224849_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5578466792465566530" /></a><br /><br /><br /><br /><br />Here's what mom has to say:<br /><br /><br /> Hi Guys! My name is Penny and I am writing this blog from a mums point of view with a Turner Syndrome daughter. Mackenzie is a very lively 2 year old. She was diagnosed with Turner Syndrome at 5 months old after constant trips to the doctors and hospital with worries about her (When she was born she had really puffy hands and feet and they told me it was due to her drip). When we went to the hospital for results they took us into a room on our own and I knew straightaway there was a problem. The doctor sat us down and started explaing to us about syndromes, and then told us Mackenzie had Turner Syndrome. I asked what this would mean? And she told me that Mackenzie had a full x chromosome missing (girls have 2). She told me that Mackenzie could develop a few problems later on in life, take it day by day. She said the feet was a sign, high arch pallette (Mackenzie wasn’t feeding). Doesn’t sleep either. Then came the biggest shock of all: INFERTILITY. I just burst into tears. I was shaking and so shocked! I thought how the heck has this happened? I asked the doctor and they said the chromosome had just got lost at conception. I asked the doctor what would happen now and she said we would need to see a specialist in Turner Syndrome. As I was leaving the hospital she advised me not to look it up in the internet. <br /> I went home and I did look it up on google straightaway. I needed to know what this was. I saw on google they had a lot of very bad cases of it which did scare me a bit . I saw a lot of the characteristics also fitted in with Mackenzie too. I then saw that the only chance they could get pregnant was through egg donotion (IVF.) At this point, I then decided the desicion was made for me to hopefully be given the chance to donate eggs for Mackenzie should she wish to use them in the future? She doesn’t have to. I just want to give her that option. I am waiting on an appointment with the IVF doctors to hopefully set the wheels in motion. I know some people don’t agree with what I am doing but I would just like to ask if you were given this scenario would you do it? I know I would do anything to help my children if they wanted it. One thing I have realized with Turners syndrome is not enough people are aware so I am also raising awareness of it. This is something that affects 1 in 2500 girls and most people don’t find out till there teens or even later. We are so lucky Mackenzie was diaognosed now. Mackenzie has started growth hormone treatment to help her grow (it is doing a fantastic job). She is also part deaf too, she has hearing aids and communicates through sign. We take each day as it comes and deal with every new thing that arises. I will keep you informed of the ivf appointment and let people know how it goes. I thank you for reading my story.<br /><br /><br /><br /><br />If you want more info, check out this facebook group by visting the link I have posted on my page, titled More Doctors Should Be Aware of Turner's Synd.Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com1tag:blogger.com,1999:blog-1781520982657081717.post-14677691596987025462011-02-13T10:09:00.005-05:002011-02-13T10:30:29.950-05:00A Cracking of the HeartI came across this book a few days ago. I know some of you may have already heard about it, but for those who haven't, it seems like a great book! I plan on reading it soon. <br /><br /><br /><a href="http://4.bp.blogspot.com/-WBJsaCMmDao/TVf4wip4lbI/AAAAAAAAAE8/XvTW-S6JOek/s1600/a-cracking-heart-david-horowitz-hardcover-cover-art.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 200px; height: 306px;" src="http://4.bp.blogspot.com/-WBJsaCMmDao/TVf4wip4lbI/AAAAAAAAAE8/XvTW-S6JOek/s320/a-cracking-heart-david-horowitz-hardcover-cover-art.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5573196576714167730" /></a><br /><br />You can find it on amazon.com if you'd like to order. There are also many interviews with the author online.Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-31559997108940721072011-02-01T07:34:00.003-05:002011-02-01T07:36:58.619-05:00So....how will you spread TS awareness?Since it is TS awareness month, I came up with this idea. As the month goes on, why don't you guys send me pictures of yourselves and what you're doing to spread awareness? Once the pictures start coming, I can post them right here on the blog! Just be sure to send me names and a descripton if you're going to participate.Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-35161504057705714502011-02-01T07:25:00.004-05:002011-02-01T07:33:32.636-05:00....TS Awareness is finally here!Ok...the month for TS Awareness is finally here. I hope everyone enjoys it. Do the best you can to spread the word about TS!<br /><br /><a href="http://2.bp.blogspot.com/_-QeprfGrw6c/TUf9F9HB-TI/AAAAAAAAAEg/BQ3J4m4xS2o/s1600/images.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 197px; height: 256px;" src="http://2.bp.blogspot.com/_-QeprfGrw6c/TUf9F9HB-TI/AAAAAAAAAEg/BQ3J4m4xS2o/s320/images.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5568697743012133170" /></a><br /><br /><a href="http://3.bp.blogspot.com/_-QeprfGrw6c/TUf9QJztNiI/AAAAAAAAAEo/9I4-5-ahkyg/s1600/untitled.bmp"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 124px; height: 184px;" src="http://3.bp.blogspot.com/_-QeprfGrw6c/TUf9QJztNiI/AAAAAAAAAEo/9I4-5-ahkyg/s320/untitled.bmp" border="0" alt=""id="BLOGGER_PHOTO_ID_5568697918219433506" /></a><br /><br /><a href="http://3.bp.blogspot.com/_-QeprfGrw6c/TUf9dI5lb5I/AAAAAAAAAEw/1zPfgKDDcP4/s1600/imagesCAGL2PH8.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 167px; height: 167px;" src="http://3.bp.blogspot.com/_-QeprfGrw6c/TUf9dI5lb5I/AAAAAAAAAEw/1zPfgKDDcP4/s320/imagesCAGL2PH8.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5568698141313953682" /></a>Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-67622005880023881612011-01-21T08:36:00.005-05:002011-01-21T08:52:20.992-05:00February - TS Awareness Month!<a href="http://1.bp.blogspot.com/_-QeprfGrw6c/TTmN9mn_hJI/AAAAAAAAAEQ/W_uo2oGwWjQ/s1600/shorthappens.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 241px; height: 241px;" src="http://1.bp.blogspot.com/_-QeprfGrw6c/TTmN9mn_hJI/AAAAAAAAAEQ/W_uo2oGwWjQ/s320/shorthappens.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5564634904072782994" /></a><br /><br />Some of you may have already heard, but the TS Society is sponsoring the first TS awareness month this coming February 2011.<br /><br />I think this is awesome, and it's a great way to spread the word about TS! If you want to find out more, visit the society's website at www.turnersyndrome.org!Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-37715322407829814792011-01-17T09:06:00.000-05:002011-01-17T09:12:37.955-05:00...getting excited!Hey everyone!<br /><br />How are you all? I felt the need to check in this morning! I've got some updates. First of all, I have my next endo appointment coming up on the 27th. At the last one, she told me that I may be coming off the gh shots very soon! I'm soooo excited about that! My height is a little over 5'2. We're hoping I can get to at least 5'3. She's also going to up the dose on my estrogen patch. I'll let you know what happens at this next visit! =)<br /><br />Keep checking my blog for some new posts to come soon! <br /><br /><br />*CColleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0tag:blogger.com,1999:blog-1781520982657081717.post-66343194630614997752010-12-07T19:10:00.000-05:002011-01-08T09:08:42.480-05:00Cassidy, Kate, and AveryHi everyone!<br /><br />I' ve been chatting with some TS moms recently, and have decided to introduce you to their wonderful TS angels! <br /><br /> <br /> Cassidy<br /><br /><br /><a href="http://3.bp.blogspot.com/_-QeprfGrw6c/TP7OvMmOLeI/AAAAAAAAADU/My0rawgF5A0/s1600/untitled.bmp"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_-QeprfGrw6c/TP7OvMmOLeI/AAAAAAAAADU/My0rawgF5A0/s320/untitled.bmp" border="0" alt=""id="BLOGGER_PHOTO_ID_5548099101197741538" /></a><br /><br />(Cassidy is standing on the left, in the pink.)<br /><br />Cassidy has been a friend of mine for a very long time! She's only a year older than me. My mother introduced me to her online. We have talked ever since. Years ago, we would send videos back and forth to each other giving updates on how we were doing.<br /><br />She is a very bright, funny girl. I'm lucky to know her! She's been through a lot, just like I have, and it's nice to know there's a girl close to my age living with TS. <br /><br /><br /> Kate<br /><br /><br /><a href="http://2.bp.blogspot.com/_-QeprfGrw6c/TShvHqo9PSI/AAAAAAAAADo/EhvrXAjlgmY/s1600/KATE.bmp"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 238px; height: 320px;" src="http://2.bp.blogspot.com/_-QeprfGrw6c/TShvHqo9PSI/AAAAAAAAADo/EhvrXAjlgmY/s320/KATE.bmp" border="0" alt=""id="BLOGGER_PHOTO_ID_5559815917484719394" /></a><br /><br /><br /> <br /><br />I've known Kate for while now, too. We share the same endocrinologist. Kate is a cute girl, and she's full of energy! The following is from a conversation I had with her mother. <br /><br /><br /><br />Kate has always been small; I remember when I was pregnant with her. I was never that misrable, I could lie on my tummy and move, and with my son I could not. My afp test came back a little funny so I went for a level 2 ultrasound, they checked out everything and said it was fine. When I went into labor I remember the panicked look on the nurse's face when she lifted my shirt and said, " Oh no, how early are you!!" my reply was 7 days............<br /><br />Once she was born via c section she cried, and cried, and cried. She had such bad reflux and could never eat more then 3 ounces, it made for a long year!!! Once she turned one it got better, but everywhere!!!!!!!!!!!!!!!! I got "She is how old? She is so tiny,". I wondered does she look that different and I just do not see it? I asked the doc, he was not concerned ever because she always grew just at her own rate, my mom is 4"11, and she went up slightly at every check up.<br /><br />I spent many many hours studing Kate wondering, every one assured me she was fine, and didn't look different, just small but I always felt something was not right, but kept getting brushed off.<br /><br />Anyways some stuff went on at our regular doc I was not happy with and I changed doc when Kate was 4. As soon as this doc saw her she mentioned her being small, I said I knew, the other doc had run some tests and it all came back fine, she asked if she could run her own tests, but she was sure she was fine, but still wanted to run them. I agreed. When I sat waiting for Kate's turn for her blood draw and I glanced at the paper and saw all the tests she was running I knew we were not coming out of this just being small for her age.<br /><br />A few months went by, I thought we were in the clear and my worries were just normal mom things. Then the doc called and wanted to see Keith and I and not to bring Kate, by the time I got to the doc the things that went through my head were unthinkable of what I was dreaming was wrong.<br /><br />We got the diagnosis. It was not easy and I was a mess for months. I went to all the doctors to check on all the things that could be wrong, the one thing that really, really caught me off guard was her hearing tests came back bad and she needed hearing aids, which I never saw any hearing loss. Her speech and vocab were perfect, she never wanted the tv loud etc. I never have put aids on her and she is now almost 8 and she is excelling in school, she sits in the front of the room but thats about it, I do believe sometime she will have to be wearing hearing aids with out a doubt, its just is it this year or in 5 more. Her heart so far is ok, and everything else. She takes GH never ever has she given me a problem about the shots. We told her she has something called TS, and her body does not produce all the "ingredients" it needs to grow and the shot puts the ingredients in. She accepted that fine. She knows her hearing is off also. She hates being short, it is getting better but she became so sensitive to it, before we even knew she had TS, everyone negative and making faces when I told them her age, I think she really took that in. It's getting better! She is the shortest in class, still in 2nd grade, but she is catching up a bit. She will be short ,I tell her ,and it's not a bad or good thing. It's just who she is.<br /><br />Kate is one of the most stubborn, strong minded, brave kids I know. She leaves me speechless at times. She knows what she wants and who she wants to be, she will argue with me for hours if I let it go on, about an outfit, or her hair, I try to pick my battles. The other thing about Kate is her kindness, she is sooooo loving. Always full of hugs, she has the cutest nick names for everyone and they are all terms of endearment. She is so happy, yet she has so much to learn still, I just hope she can remain as happy as she is now. She has had some hard days, but way more good ones. <br /><br />When Kate was diagnosed with TS I made the decision that it would not become an excuse for her to not have as much expected from her, if something was harder it was harder, but TS was not a weakness, its her genetic makeup and everyones genetic makeup is different and we all struggle with different things. It has worked well. I do find myself wondering if things are TS related and almost wanting to just let certain behaviors go, I do feel sad Kate has more to worry about, but I can not let her know this. I will always worry, it's not something I ever thought I'd have to deal with in my life with my only daughter, I just hope and plan to help her become the woman she is meant to be and most of all I want her to be happy. I know she wants children right now anyways, lol. I tell her some babies come on airplanes, some grow in a moms tummy. <br />She says one will grow in her tummy, which with medical stuff is possible some day. I still have some hard days, I always probably will. She is my daughter and I want everything for her, for both my children. As much as I worry at times, deep down I know it's going to be ok, just as I knew something was wrong when she was an infant. We take it day by day here and life is very, very normal with her. She is just like her peers in every way except she is more loving and outgoing then some and a bit shorter. She has no special iep at school. I decided not to tell them about her having ts. I just hate to make decisions for her that will effect her entire 12 years of school and growing up. Don't get me wrong if she was or does struggle and need anything extra I will have no problem telling them she has TS. I just wanted to see how it went. Again she is in second grade and doing great socially, and academically, she dances, and sings, and loves girl scouts, Barbie, clothes, shoes too. She is such a girly girl, and she is mine:)<br /><br /><br /> Avery<br /><br /><br /><a href="http://1.bp.blogspot.com/_-QeprfGrw6c/TShreu6EQWI/AAAAAAAAADg/vZTNewQ2kg0/s1600/154707_10150322300880113_618900112_15972094_7521919_n.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 254px; height: 320px;" src="http://1.bp.blogspot.com/_-QeprfGrw6c/TShreu6EQWI/AAAAAAAAADg/vZTNewQ2kg0/s320/154707_10150322300880113_618900112_15972094_7521919_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5559811915720704354" /></a><br /><br /><br /><br />Recently, I met Avery. I've had the chance to read many blog posts/articles about her. From what I see, she's one smart,adorable gal. I can tell she'll grow up to do some amazing things in this world! <br /><br /><br />I hope these moms and TS daughters have shown you that anything is possible. We TS girls don't have much to worry about!Colleenhttp://www.blogger.com/profile/15937079653755737194noreply@blogger.com0