tag:blogger.com,1999:blog-91508226528231352202024-03-05T20:31:15.533-05:00Brooklyn Ashleigh ButlerMy name is Brooklyn. I am six years old and I have Rett Syndrome. My mommy works with a wonderful Rett Syndrome organization called Girl Power 2 Cure. Be sure to check it out www.girlpower2cure.org
I hope you enjoy this blog...it is filled with stories and pictures of our family's life with Rett Syndrome.Brooklynhttp://www.blogger.com/profile/11930568366936897803noreply@blogger.comBlogger1061125tag:blogger.com,1999:blog-9150822652823135220.post-9055006848036836552012-03-09T21:28:00.002-05:002012-03-09T21:28:59.194-05:00NEW BLOG ADDRESSHey Everybody......<br />
I have combined the kiddos blogs - be sure to stop over to <a href="http://www.specialmommyx2.com/">www.specialmommyx2.com</a> and keep up with us there :) <br />
Love & Hugs,<br />
KellyKellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com3tag:blogger.com,1999:blog-9150822652823135220.post-44206352797822167862012-03-08T06:03:00.000-05:002012-03-08T06:03:00.172-05:00Garden of Hope for Rett Syndrome<iframe allowfullscreen="" frameborder="0" height="225" mozallowfullscreen="" src="http://player.vimeo.com/video/37137993?title=0&byline=0&portrait=0" webkitallowfullscreen="" width="400"></iframe><br />
<a href="http://vimeo.com/37137993">Garden of Hope for Rett Syndrome</a> from <a href="http://vimeo.com/girlpower2cure">Girl Power 2 Cure</a> on <a href="http://vimeo.com/">Vimeo</a>.<br />
Hey Blog readers.....have you been wondering how YOU might be able to get involved with raising some money for Rett Syndrome research (with little work for you!?) THIS is your chance!<br />
The Garden of Hope project is SO easy! Watch the video then click <a href="https://secure.girlpower2cure.org/np/clients/gp2c/product.jsp?product=8" target="_blank">HERE </a>to order your paper flowers!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com15tag:blogger.com,1999:blog-9150822652823135220.post-19196327878749052762012-03-07T16:29:00.000-05:002012-03-07T16:29:05.471-05:00We are SOOOOO ready for SPRING around here!We LOVE it when we can get outside for some fresh air....plus my walk to the mail box is SO much better when Brookie can join me!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw3AsoNlBkr40snh-Y1GSnxC38rtdPJKPFyZ9_q2WUE_73oqoqBU6-ir0y0C4H10I7M_rAg7HA_GIKR2mGkynYB-tGBIjLBdsNSLKXlr2yEV6QJJHjI9kDwDfT4kI8l_m__ylgDGh9HLrt/s640/blogger-image--1847642149.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw3AsoNlBkr40snh-Y1GSnxC38rtdPJKPFyZ9_q2WUE_73oqoqBU6-ir0y0C4H10I7M_rAg7HA_GIKR2mGkynYB-tGBIjLBdsNSLKXlr2yEV6QJJHjI9kDwDfT4kI8l_m__ylgDGh9HLrt/s320/blogger-image--1847642149.jpg" width="240" /></a></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/AVvXsEjv2hgkK8_63Kdv5G64L7ARyVEMITuyqBNSUkq_T5V2QLiqeE3kI2QqTTOXsHx_ykUawoo9N45SD6UVwR4Pyr1GldaxsZDLIM5cNarpzIhc8MYnDl8jjNskcs9QQyeKRN54xpW98_OeANjy/s640/blogger-image--435457845.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv2hgkK8_63Kdv5G64L7ARyVEMITuyqBNSUkq_T5V2QLiqeE3kI2QqTTOXsHx_ykUawoo9N45SD6UVwR4Pyr1GldaxsZDLIM5cNarpzIhc8MYnDl8jjNskcs9QQyeKRN54xpW98_OeANjy/s320/blogger-image--435457845.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brooklyn loves watching her cousin Jackson play basketball!</td></tr>
</tbody></table>Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com1tag:blogger.com,1999:blog-9150822652823135220.post-3430321844349638472012-03-07T06:47:00.000-05:002012-03-07T06:47:00.238-05:00KPC Family Magazine article<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMXx1DywH-Bjs7pbS45kCSxyOepRGbAkCypn1sXnyicThoyJPyj3mxHVCxNo48eTPXQaTez5caoU2Q_GulMnZs4ufSptAfjp5AbRtfNLEODqSPiNlyAD9GuRyBF-DvmoMAAjGjQUpCwnOs/s1600/magazinecover.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMXx1DywH-Bjs7pbS45kCSxyOepRGbAkCypn1sXnyicThoyJPyj3mxHVCxNo48eTPXQaTez5caoU2Q_GulMnZs4ufSptAfjp5AbRtfNLEODqSPiNlyAD9GuRyBF-DvmoMAAjGjQUpCwnOs/s320/magazinecover.jpg" width="247" /></a></div>I wanted to share our magazine cover photo and article with all of you! I seriously have two of the cutest kids ever, don't ya think?!?! Click <a href="http://www.scribd.com/full/82725947?access_key=key-1pv07c18588cvuapdx7n" target="_blank">HERE</a> to read the article!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com3tag:blogger.com,1999:blog-9150822652823135220.post-53272218810644585312012-03-06T13:28:00.000-05:002012-03-06T13:28:26.292-05:00The Disney Princess 1/2 Marathon (running for Rett Syndrome!)I DID IT!!! I completed my very first 1/2 Marathon!!! I have to admit, I was not sure I could tackle this goal - but when <a href="http://www.gp2c.org/" target="_blank">Girl Power 2 Cure</a> decided to have a team and raise money (and LOTS of awareness for Rett Syndrome - well.....that was the motivation I needed!)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8NFWvv1JoR0kq2buqIlwHMFcNvL086iWhkNZzh-4JyFTm9pja8bvnGehVwoQpnIWEqHPS95-IAkshLmGf01XtBuNBcDDg6YqZra52DYodWSkR-mD6Mvr8ENs42nzUot1618Glhe_7HBwD/s640/blogger-image-1246878479.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="311" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8NFWvv1JoR0kq2buqIlwHMFcNvL086iWhkNZzh-4JyFTm9pja8bvnGehVwoQpnIWEqHPS95-IAkshLmGf01XtBuNBcDDg6YqZra52DYodWSkR-mD6Mvr8ENs42nzUot1618Glhe_7HBwD/s320/blogger-image-1246878479.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here I am with my official runner number :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwmEgGD-jkZlp6FktoFYsSYMOi3AB9G31-y8ex36odmUZ0A68RUvES6CVTpmEaVnPZB9WtWA2iCLxN_WpESsjWN3O8BXc9mTCeTcHxEdrFdIVlJ0yOjt-b4eb2injyeEYXonx45WPBy_Bp/s640/blogger-image-2054865967.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwmEgGD-jkZlp6FktoFYsSYMOi3AB9G31-y8ex36odmUZ0A68RUvES6CVTpmEaVnPZB9WtWA2iCLxN_WpESsjWN3O8BXc9mTCeTcHxEdrFdIVlJ0yOjt-b4eb2injyeEYXonx45WPBy_Bp/s320/blogger-image-2054865967.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">'Team Brooklyn" at 4:00 am waiting to head to the starting line!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgks7J_KBZR_4hfTePyR0sDfPIkcQ4MWKe443Ju1F5F8uWgxSg679lFrSQ-1fFbiyDmp9ZB1m_0uLQexfoOUENrDOIbsd0NAKZ3MLim4kKFXJB6tB5FH369Q75-Zpld1423IAOjsmsJMOCA/s640/blogger-image-1906545527.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgks7J_KBZR_4hfTePyR0sDfPIkcQ4MWKe443Ju1F5F8uWgxSg679lFrSQ-1fFbiyDmp9ZB1m_0uLQexfoOUENrDOIbsd0NAKZ3MLim4kKFXJB6tB5FH369Q75-Zpld1423IAOjsmsJMOCA/s320/blogger-image-1906545527.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nikki designed this AWESOME shirt that she wore to dinner our first night - LOVE it!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr-hl96xyqDg0AkTel5fd0SsqSL9j6glxmB1c70asfZ6qsfn28uTUDW2SONrRMkFeOhdXp0huj5gxLQrtZgILy9cZWcAoHnL1Aw6NYDUcZax0GdR8Lll2tMLsPx5Jj-pkM7lscnIzBtem1/s640/blogger-image--1237280633.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="275" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr-hl96xyqDg0AkTel5fd0SsqSL9j6glxmB1c70asfZ6qsfn28uTUDW2SONrRMkFeOhdXp0huj5gxLQrtZgILy9cZWcAoHnL1Aw6NYDUcZax0GdR8Lll2tMLsPx5Jj-pkM7lscnIzBtem1/s320/blogger-image--1237280633.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kristin and I stuck by each other the entire race :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB04mg-XEZpulL4SNGZarxFXjRTzccdBdWJcJwLwyz0qyBI6K8KfmgFmODsag_9vJUztXkykxEw9X3XU4gtzPKIPCwU2irt1CwK0UPll1moWbzpTbjoNA-h00dzm3vjC-I1KFSi3OTRINV/s640/blogger-image-1241681402.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB04mg-XEZpulL4SNGZarxFXjRTzccdBdWJcJwLwyz0qyBI6K8KfmgFmODsag_9vJUztXkykxEw9X3XU4gtzPKIPCwU2irt1CwK0UPll1moWbzpTbjoNA-h00dzm3vjC-I1KFSi3OTRINV/s320/blogger-image-1241681402.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I was SO thankful to have fellow Rett mommie Kristy & Tina running with us too - thanks COACH Tina :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK9XHUJ3frcLlObdM37kxqgC6q66c3kvfV0loaER6ZH1VuP3LarzIHc_jKimzw4g9hRTZAA3QmyAHSREVGopFxdHc7WdJwMTbZDozySx3beJoSKASJHtqwYZ9iNuDJZhezL-NO8RXfGZ3U/s640/blogger-image-1276105766.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK9XHUJ3frcLlObdM37kxqgC6q66c3kvfV0loaER6ZH1VuP3LarzIHc_jKimzw4g9hRTZAA3QmyAHSREVGopFxdHc7WdJwMTbZDozySx3beJoSKASJHtqwYZ9iNuDJZhezL-NO8RXfGZ3U/s320/blogger-image-1276105766.jpg" width="283" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was the sign at our half way point - the song "Stronger"was also playing :) </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAIAhwE6mLmNF7u242SXHKaWbuQ-0Q-YwGo2NilWyCbOiLgnjThb2Qlea4un8v7ctc13Qxkq2f2m-t0OIVUfkN4iRI77bSEmPf4UwH2MwReIqVwbhK5iK-YQEj7xUkv8eLdwDNNP5BM9qc/s640/blogger-image--1831851790.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAIAhwE6mLmNF7u242SXHKaWbuQ-0Q-YwGo2NilWyCbOiLgnjThb2Qlea4un8v7ctc13Qxkq2f2m-t0OIVUfkN4iRI77bSEmPf4UwH2MwReIqVwbhK5iK-YQEj7xUkv8eLdwDNNP5BM9qc/s320/blogger-image--1831851790.jpg" width="246" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">OUR inspiration for running!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFTbFVyNTn-Sy89fMdXOhE3aHfWMioq80QgS5USCxBqhC22DIQ2gbQ9YbkPFGtan_lfP5-MhzLy97mkWaFAuj5vfEfi-_ztrfKU04lz7OqItpc2XQxvulChCznuKFf3JI_yf-HXtp3c-tl/s640/blogger-image--2062544803.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="315" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFTbFVyNTn-Sy89fMdXOhE3aHfWMioq80QgS5USCxBqhC22DIQ2gbQ9YbkPFGtan_lfP5-MhzLy97mkWaFAuj5vfEfi-_ztrfKU04lz7OqItpc2XQxvulChCznuKFf3JI_yf-HXtp3c-tl/s320/blogger-image--2062544803.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">OK....I was A LITTLE proud of myself!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmJlpu4wL_lulfy63JYiT06CUQJyLLFRGtFqsQqPaT34Bf4pmj5vXkzKIDoq_8Pnl3sXZV62126l35WYiB9rLgO1OS0LUX3q8IMeOq4hvqUGSOrmvix5FdpUm9CWG7QprF3GqlTRvqlpyi/s640/blogger-image-153797801.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="243" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmJlpu4wL_lulfy63JYiT06CUQJyLLFRGtFqsQqPaT34Bf4pmj5vXkzKIDoq_8Pnl3sXZV62126l35WYiB9rLgO1OS0LUX3q8IMeOq4hvqUGSOrmvix5FdpUm9CWG7QprF3GqlTRvqlpyi/s320/blogger-image-153797801.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ingrid and I with our medals :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLr_gxnRfVPLaub82G1La-qxaqDxZnIU544YN0pjdUXMwStYHd9tF2KtiMs7hQKmjTra8DnS_tnqZ13pP8Srhy-33RLu0vboSD8bdx2a1qfM8bfgSnaSTmbkGCLYe7BavHGkc8W6HVYgaT/s640/blogger-image--1523543973.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLr_gxnRfVPLaub82G1La-qxaqDxZnIU544YN0pjdUXMwStYHd9tF2KtiMs7hQKmjTra8DnS_tnqZ13pP8Srhy-33RLu0vboSD8bdx2a1qfM8bfgSnaSTmbkGCLYe7BavHGkc8W6HVYgaT/s320/blogger-image--1523543973.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">an up close look</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgXM2D8PHwjHj6K5sVspU3muUkMdlLdB0rc_i6IAf3gugoA9PsPVfoHZCICI-Ugxlm2gZ1iEexDb-6I2zQ7u6HUVZbhXzgzA85jIv8-w1cKV_fp8g_gqzpJaQgsFunBAwkQ8A1ss6yAB4D/s640/blogger-image--915996198.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgXM2D8PHwjHj6K5sVspU3muUkMdlLdB0rc_i6IAf3gugoA9PsPVfoHZCICI-Ugxlm2gZ1iEexDb-6I2zQ7u6HUVZbhXzgzA85jIv8-w1cKV_fp8g_gqzpJaQgsFunBAwkQ8A1ss6yAB4D/s320/blogger-image--915996198.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">SO much GIRL POWER in one photo:)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmQ06Ul5OMwtdUB6DZExrQ-iWsqA1k2SZluqMF2EoX94z9SPSE0z_XhcA-8vWJAWLVk1H694jFZ7WFV-4RlAuspYcW0HSZIrSpeGR_mvrF5XbABdr8c_LixBjC78RM6unjQi6gmosB079z/s640/blogger-image--973170790.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmQ06Ul5OMwtdUB6DZExrQ-iWsqA1k2SZluqMF2EoX94z9SPSE0z_XhcA-8vWJAWLVk1H694jFZ7WFV-4RlAuspYcW0HSZIrSpeGR_mvrF5XbABdr8c_LixBjC78RM6unjQi6gmosB079z/s320/blogger-image--973170790.jpg" width="254" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brooklyn, the TRUE medal winner - I love this girlie!!</td><td class="tr-caption" style="text-align: center;"><br />
</td></tr>
</tbody></table>So, will I do it again?<br />
I think I just might :) and YOU can too! Girl Power 2 Cure is already signing up runners to join our team for the 2013 Disney Princess Race! Just Click <a href="http://girlpower2cure.us1.list-manage.com/subscribe?u=b883f2a60461b6aa07d0011a7&id=1efb05b054" target="_blank">HERE </a>to have your name and email added so that you can keep up with all of the latest 2013 race day news! <br />
I honestly do not have the words to describe what this weekend meant to me - we educated thousands of people about Rett Syndrome AND I proved to myself that with the right motivation - I CAN DO just about anything! SO I ran.....I ran because my daughter can't!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com1tag:blogger.com,1999:blog-9150822652823135220.post-84775343518878391282012-03-04T08:11:00.000-05:002012-03-04T08:11:09.096-05:00the famous purple card ;)<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilGSRY2Y_l8r0ln89Z0m5p0oPTJIV57EWsvJQULHbTeUpKuUgkIj0p1Wubkv-F_EHgahpIhLyaUehSAGepMUmqsmGyHqjx3DC8bzMAct-8sdjCAmS3jRUHgDYoVmLj7NKijFRJqvYrL_vy/s1600/Brooklyn-FRONT-biz-card.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilGSRY2Y_l8r0ln89Z0m5p0oPTJIV57EWsvJQULHbTeUpKuUgkIj0p1Wubkv-F_EHgahpIhLyaUehSAGepMUmqsmGyHqjx3DC8bzMAct-8sdjCAmS3jRUHgDYoVmLj7NKijFRJqvYrL_vy/s1600/Brooklyn-FRONT-biz-card.jpg" /></a></div>GUESS WHO has one of these amazing purple cards????<br />
Dr. OZ!<br />
A friend and fellow Rett mommy met him last week while he was taping a news segment and she gave give him one of her daughter's cards and one of Brooklyn's! THEN.....he asked for a phone number of someone at <a href="http://www.gp2c.org/" target="_blank">Girl Power 2 Cure</a> and she happened to have my cell number in her contacts :)<br />
At the very least, Dr. Oz was introduced to Rett Syndrome.....and who knows - maybe he will actually call! That would be A.W.E.S.O.M.E!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com0tag:blogger.com,1999:blog-9150822652823135220.post-60104332294961444902012-03-03T09:21:00.000-05:002012-03-03T09:21:28.186-05:00Friends; my daughter has some of the best!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8joaEX-M6t4ruB2ORnoRj8L00uaofqm4W77xhnjece4iRqSrTy4kJzgrL1DmYTWdDnCLQco2vYs3i5v5SP5ayBmf7FD7y1Wr0NCBIBJ9YU6kvDsHhXFjfBCawipIl4oBROXE7qf_lFhIO/s1600/marinadrawing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8joaEX-M6t4ruB2ORnoRj8L00uaofqm4W77xhnjece4iRqSrTy4kJzgrL1DmYTWdDnCLQco2vYs3i5v5SP5ayBmf7FD7y1Wr0NCBIBJ9YU6kvDsHhXFjfBCawipIl4oBROXE7qf_lFhIO/s320/marinadrawing.jpg" width="320" /></a></div>Often as a special needs mom it is not the feeding tube, seizures, wheelchairs and such that I spend my time worrying about. It is the other "life" things like will my daughter grow up having close girlfriends like I did. Then....I get a message from a mom of one of Brookie's classmates letting me know that her daughter bought a doll today "because it looks like Brooklyn" and that they have lots in common like "Brooklyn likes pink and I like pink, and Brooklyn likes purple and I like purple." Yep - I LOVE that little girls at this age only need "the small things" in common to be the best of friends. Her mom also shared this drawing that M drew of the two of them.<br />
Ahhhhh......my heart if full of happiness right now!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com0tag:blogger.com,1999:blog-9150822652823135220.post-91768942886284405132012-02-29T09:00:00.002-05:002012-02-29T09:06:03.279-05:00Surgery DateMany of you remember me posting THIS picture of Brooklyn's hip. Well - surgery has been scheduled.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7zndUCeHk55OaJRoNy-o_1Qsv0LnntftZuVR3fssyK5ANBOoXcWnkgiQLB0pC5UPpbRYgj6hq_TC-7IiJfkYhJh133iK26Qd8_hQIwbOUcGL9h764K0Iu4cMsOReZr4nRBJMOQI46Da8G/s1600/xray.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7zndUCeHk55OaJRoNy-o_1Qsv0LnntftZuVR3fssyK5ANBOoXcWnkgiQLB0pC5UPpbRYgj6hq_TC-7IiJfkYhJh133iK26Qd8_hQIwbOUcGL9h764K0Iu4cMsOReZr4nRBJMOQI46Da8G/s400/xray.jpg" alt="" id="BLOGGER_PHOTO_ID_5714557298057960562" border="0" /></a>We will be over in Chicago on April 3rd for the day doing pre-op, registration, and labs then will go back on April 11th for the actual hip reconstruction and muscle lengthening surgery. I am not sure why actually having the date on the calendar is hitting me so hard. We have been thinking about it for months now and knew it was coming. I guess this is just another one of those "I hate what Rett Syndrome puts Brooklyn through" moments. I should also say that there is a chance that surgery will be postponed if her seizures are not under control.<br />We have been battling them a lot lately - we are not on our "therapeutic level" of Valproic Acid and hope that Brooklyn will be seizure free SOON. My poor baby has had a rough few months and to top it off she has been home since since Friday :( and she LOVES school!<br />Please keep the prayers coming for me and the kiddos. I feel a teeny bit stressed right now.Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com0tag:blogger.com,1999:blog-9150822652823135220.post-88652680976769502402012-02-28T14:51:00.002-05:002012-02-28T17:08:06.891-05:00My reason to run<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirvhvycrHReH3EalCY9is47byHXM_D6sKEAheXZJqkHDGtSIZRBGZ4kFj8vtGkVbA6GLa5-22LaI1Mnd5FxuHzmIrqQOPMtiZC7HljDP5L7wsCDAigZmHzWtab8WJ-QUNK7jEcJfqLw93Z/s1600/IMG_0087.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirvhvycrHReH3EalCY9is47byHXM_D6sKEAheXZJqkHDGtSIZRBGZ4kFj8vtGkVbA6GLa5-22LaI1Mnd5FxuHzmIrqQOPMtiZC7HljDP5L7wsCDAigZmHzWtab8WJ-QUNK7jEcJfqLw93Z/s400/IMG_0087.JPG" alt="" id="BLOGGER_PHOTO_ID_5714276847339255714" border="0" /></a>I have lots and lots of pictures to share of my 1/2 marathon weekend. I am still recovering so that post will have to wait. I do however want to post this one now. Because it is my favorite one. Brooklyn is the reason I participated on Team GP2C for the Disney Princess 1/2 marathon. BELIEVE ME- I am NOT a runner (anyone who knows me can confirm this fact!) In fact - until this weekend it you were to ask me if I could do a 1/2 marathon my response would be "no way, I CAN'T do it!"<br />But then I think of Brooklyn and everything that she deals with on a daily basis as she lives with (and battles with) because of Rett Syndrome and it motivated me - it motivated me to do it because I have legs that CAN run. SO I ran for Brooklyn and for all the girls (and a few boys!) that have Rett. Thank you Brooklyn - for your inspiration! I pray that someday soon YOU will be free from Rett Syndrome and running with me!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com3tag:blogger.com,1999:blog-9150822652823135220.post-15615462204414063032012-02-21T11:31:00.002-05:002012-02-21T11:39:17.905-05:00A birthday blessing<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm69pmzF9wkwiE_zhBdJuxL0vpKIf8T-RfLikbhyphenhyphenpb-SHDS_qZsx-p0H6EjLUMinklei6trBXhn7c1O5s_JyGMQXLv5KfxH3zlue1KhN2wPucatBYyGoD44kNjXLQHUyAiT9aCkHuboVqb/s1600/masong.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 332px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm69pmzF9wkwiE_zhBdJuxL0vpKIf8T-RfLikbhyphenhyphenpb-SHDS_qZsx-p0H6EjLUMinklei6trBXhn7c1O5s_JyGMQXLv5KfxH3zlue1KhN2wPucatBYyGoD44kNjXLQHUyAiT9aCkHuboVqb/s400/masong.jpg" alt="" id="BLOGGER_PHOTO_ID_5711627588153207170" border="0" /></a>Do you know how sometime you come across a kid that you know is going to make a difference in this word? You know....a young man that has so much heart, so much compassion, so much awesomeness that it actually makes YOU look at what you are doing and want to do more? Well....Mason is one of those kiddos. He was Brooklyn's BIGGEST fan as she was preparing for the special needs Christmas play (seeing it like 3 times I think!) He has always just "talked" to Brooklyn like he does any 6 year old - Rett Syndrome does not bother him - except for the fact that he WANTS it cured!<br />I got a text from his mom Amy saying that Mason was having his birthday party and had decided that instead of asking for gifts from his buddies - he wanted money to for Rett.....to help Brooklyn. It is not often a text makes me cry but this one did.<br />Amazing people like Mason and his mommy keep me going. Their lives are not daily affected by Rett Syndrome like mine but still - they help....always.<br />Mason - you are A.W.E.S.O.M.E. - HAPPY Birthday. Thank you for making YOUR special day - special for US too!<br />His donation???? $88.00 - HOW COOL IS THAT!!!???Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com6tag:blogger.com,1999:blog-9150822652823135220.post-25978705537352926942012-02-20T10:21:00.004-05:002012-02-20T15:14:02.085-05:00A little Girl Power<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEntktUnR1znyStj1fWPmgeDSVueVe_vTLAumTRui4u90dvJyftY6Ef3KGs7rBsUpApPJh-AhexQM2AumVgIicLyKngMkuykEOl5yfOP9EO0qYf0coyb7edUbTaoWrDgofd5ZwIoHozCc4/s1600/photo-4.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEntktUnR1znyStj1fWPmgeDSVueVe_vTLAumTRui4u90dvJyftY6Ef3KGs7rBsUpApPJh-AhexQM2AumVgIicLyKngMkuykEOl5yfOP9EO0qYf0coyb7edUbTaoWrDgofd5ZwIoHozCc4/s400/photo-4.JPG" alt="" id="BLOGGER_PHOTO_ID_5711238414258613746" border="0" /></a>Brookie and I were sporting our <a href="https://secure.girlpower2cure.org/np/clients/gp2c/product.jsp?product=1">Girl Power shirts</a> yesterday. I had the opportunity to hand out flyers at my church to let people know about Rett Syndrome and my upcoming 1/2 marathon. I always LOVE when I have to opportunity to educate others - and if I can raise some funds too....well, that is an added bonus! I want to thank everyone at SonLight Community Church and my pastor Jason Rains!<br />(seriously, how cute is Brookie?!?!)Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com1tag:blogger.com,1999:blog-9150822652823135220.post-54527206264624494182012-02-17T15:49:00.001-05:002012-02-17T16:09:24.279-05:00Bdubs!!!<div style="text-align: center;">JOIN US next Wednesday at Buffalo Wild Wings!!<br /></div><a href="http://www.scribd.com/fullscreen/81978359?access_key=key-1dkwyuajwf5wycajlvku"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 315px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNmy7yvfInOQa3xFQLMF_nnWNOxhk2Wd6hk0zqsASK7z1oMM0f2KVcKVR0cSZ9LwWHz1k3E01TDoisHXEAteUA-Urxh_g_HqPDqY_Abo7-F7YKWrgLJj7iXoCJOciNVTv3JYuH3FBu3iBX/s400/bdubs.jpg" alt="" id="BLOGGER_PHOTO_ID_5710209619085379266" border="0" /></a>Click on the picture to print out the flyer to take with you on Wednesday!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com2tag:blogger.com,1999:blog-9150822652823135220.post-22131724897980639692012-02-17T11:04:00.002-05:002012-02-17T11:09:30.907-05:00Professor Adrian BirdProfessor Adrian Bird needs no introduction to anyone who follows Rett Syndrome research. His list of accomplishments includes discovering the MeCP2 protein, developing multiple animal models for the disease and authoring the seminal 2007 Science paper...<br />Prof. Bird was a guest of honor at the Reverse Rett London event and made the following remarks. He touches on a number of important issues. I encourage you to listen and share.<br /><iframe src="http://player.vimeo.com/video/36923022?title=0" webkitallowfullscreen="" mozallowfullscreen="" allowfullscreen="" frameborder="0" height="225" width="400"></iframe><p><a href="http://vimeo.com/36923022">Prof. Adrian Bird's Speech at Reverse Rett London event</a> from <a href="http://vimeo.com/rettsyndrome">RSRT</a> on <a href="http://vimeo.com/">Vimeo</a>.</p>Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com0tag:blogger.com,1999:blog-9150822652823135220.post-72105580403309216002012-01-25T16:34:00.002-05:002012-01-25T16:43:23.451-05:00Brookie Update<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3hcBSgZV8CaBWShRvZuCz6JY6wxF7MBq1_XuqsJCz-W4dL1CGJhrvtI7riv1hpDaMMOnAI2I_N3sn4JoclbSnyB2qUzqW1r7Np28izQfeAdnHbr7zJBx8hpdKrdFL2pO0egW-lQIkt1Q-/s1600/102_2033.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3hcBSgZV8CaBWShRvZuCz6JY6wxF7MBq1_XuqsJCz-W4dL1CGJhrvtI7riv1hpDaMMOnAI2I_N3sn4JoclbSnyB2qUzqW1r7Np28izQfeAdnHbr7zJBx8hpdKrdFL2pO0egW-lQIkt1Q-/s400/102_2033.JPG" alt="" id="BLOGGER_PHOTO_ID_5701686666645067170" border="0" /></a>Quick little update on Brookie Bean. She had her sleep study last night. She was a rock star - I wish I would have thought to take a picture of her - I have NO IDEA how she slept at all - probes on her head, by her eyes, and on her chin. She had a belt thingy around her chest and another one around her diaphragm. pulse ox on her toe and more sticker things up and down both legs - wow!<br />This is our last "hoop to jump through" before we can schedule her hip surgery. So, we are hoping nothing crazy comes back when they read the results.<br />Unfortunately her seizures are back daily :( booooo we are upping her keppra again she is on the highest does of Banzel she can be on for her weight. I assume that if this mixture does not work it will be back to the drawing board on a new mixture of anti-seizure meds :(<br />On Friday we are heading to see a surgeon about her g-tube. Her current one is WAY to big and her GI doc feels "she will grow into it." which of course is not acceptable - it was chosen because it is the lowest profile button - but it is so huge it sticks out from her belly over a half an inch. very frustrating. I will let you know how that goes!<br />Thank you ALL for your continued support, love, & prayers!!!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com2tag:blogger.com,1999:blog-9150822652823135220.post-82019039499113708552012-01-18T13:25:00.005-05:002012-01-18T14:18:10.953-05:00I'm running the Disney Princess Half Marathon......now stop laughing and read this post ;)Kristin, me, and Emilie - getting ready for our snow angels :)<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUOI8k_nSNqpbUUpkVGQlS6Pg6DZNmwuYS1DkaGkqlpp5kx5aypiZgPvurpcg13U9MFW31VgMKRN2YiTJ8WioKT-fBoSoCzzcnARs85a5VCVX6DGUEuoI2i5Uef30254XSnOdsOCeTu5qk/s1600/100_0130.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUOI8k_nSNqpbUUpkVGQlS6Pg6DZNmwuYS1DkaGkqlpp5kx5aypiZgPvurpcg13U9MFW31VgMKRN2YiTJ8WioKT-fBoSoCzzcnARs85a5VCVX6DGUEuoI2i5Uef30254XSnOdsOCeTu5qk/s400/100_0130.JPG" alt="" id="BLOGGER_PHOTO_ID_5699046581072484578" border="0" /></a>"psyching" ourselves up!<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgR9KhdE9Z7ztzliE2ucQnrw4HzxAnZLBLDdsQAKLIL4xCwYYDHfxDxKSmvY6hFJXj2efN2Dapy-Vv69sG-P3zR25O-bLlZEt2KIKnoPQx5gStusKIsQ4Rb68BvAIQp7LVKIAM7sXAZBtiU/s1600/100B0142.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 225px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgR9KhdE9Z7ztzliE2ucQnrw4HzxAnZLBLDdsQAKLIL4xCwYYDHfxDxKSmvY6hFJXj2efN2Dapy-Vv69sG-P3zR25O-bLlZEt2KIKnoPQx5gStusKIsQ4Rb68BvAIQp7LVKIAM7sXAZBtiU/s400/100B0142.JPG" alt="" id="BLOGGER_PHOTO_ID_5699046572896606338" border="0" /></a>snow angels for our <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Rett</span> Angel Brooklyn<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWdWvsmq3T8I-oaiRrPr-q0H63sum2-QudMXIE_4NS4z6dj2R1BUn6nxsX1NV-3nsPuL8DD0jnEgWwEoeW45MgyQDBe008GMlKbk2pWfxS2lVn2aK72jek0gdEwbngoYeetASV3a2R2kmW/s1600/100B0200.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 225px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWdWvsmq3T8I-oaiRrPr-q0H63sum2-QudMXIE_4NS4z6dj2R1BUn6nxsX1NV-3nsPuL8DD0jnEgWwEoeW45MgyQDBe008GMlKbk2pWfxS2lVn2aK72jek0gdEwbngoYeetASV3a2R2kmW/s400/100B0200.JPG" alt="" id="BLOGGER_PHOTO_ID_5699046558493301106" border="0" /></a>silliness - we gotta be crazy to be doing snow angels in shorts and to be attempting this half marathon!<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdnL3mZxolIm_QzQXkEVVot5z2OghqHEuNZwWN9jHOi1ZvkJEtFlfOa1U33PQqVAHIoLdB5XNuhqJEMcAI76lgJAluKSEA3fHNZCaLP1VrDqkJEa65z3wDHwDu5x2iXPBZpp2jiF25pvIO/s1600/100_0133.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdnL3mZxolIm_QzQXkEVVot5z2OghqHEuNZwWN9jHOi1ZvkJEtFlfOa1U33PQqVAHIoLdB5XNuhqJEMcAI76lgJAluKSEA3fHNZCaLP1VrDqkJEa65z3wDHwDu5x2iXPBZpp2jiF25pvIO/s400/100_0133.JPG" alt="" id="BLOGGER_PHOTO_ID_5699046555604360658" border="0" /></a>what we will not do to raise money for <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Rett</span> Syndrome!<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsM6vyOqL9a5XSxjvQIOHOeILrSATL0uDFgKOllxk7U4Pdkqq9_cI4WtT_fDnsmhikF4ij25b_EoleCwjUKGmlVlxrkoFuOpE3ONeduO5h-LVv-KMEMJcKJ7cYiu9y-bhaws8HsbX4pwKw/s1600/100B0212.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 225px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsM6vyOqL9a5XSxjvQIOHOeILrSATL0uDFgKOllxk7U4Pdkqq9_cI4WtT_fDnsmhikF4ij25b_EoleCwjUKGmlVlxrkoFuOpE3ONeduO5h-LVv-KMEMJcKJ7cYiu9y-bhaws8HsbX4pwKw/s400/100B0212.JPG" alt="" id="BLOGGER_PHOTO_ID_5699046588994925330" border="0" /></a>Since the womb Kristin and I have been there for each other through first kisses and boyfriend break ups, college choices and childbirth, marriage and even divorce – she is my rock. It is only fitting that we take on the HUGE challenge of our first ever half marathon….TOGETHER.<br /><br />Since Brooklyn’s daily life is a constant challenge for her, we decided to challenge ourselves by signing up to run the Disney Princess Half Marathon on February 26<span class="blsp-spelling-error" id="SPELLING_ERROR_2">th</span>, 2012 on the Girl Power 2 Cure <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Rett</span> Team. (oh and we talked our friend Emilie in to it too!) Keep in mind….we have not run since junior high track! But we are running for <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Rett</span>!<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_5">Rett</span> Syndrome is caused by a single gene mutation that leads to underproduction of an important brain protein. <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Rett</span> syndrome was REVERSED in mice in 2007! REVERSED! When the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Rett</span> research mice got the right protein levels in their brains, they went from cowering in the corner, shaking with seizures, to running around normally with their fellow mice within in few weeks.<br /><br />I wish that at the end of the race, instead of a finisher’s medal, they would tell me a cure has been found. But until that day (which is VERY close) I will continue to raise money for research as a cure is possible in Brooklyn’s lifetime.<br /><br />Please consider sponsoring me as I attempt to conquer ALL 13.1 miles in honor of Brooklyn’s struggle with <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Rett</span> Syndrome.<br /><br />To make a donation please click visit: <a href="http://www.firstgiving.com/fundraiser/brooklyn/princess-run">http://www.firstgiving.com/fundraiser/brooklyn/princess-run</a><br /><br />If you would like to learn more about becoming a corporate sponsor please visit: <a href="http://www.girlpower2cure.org/run/sponsor">http://www.girlpower2cure.org/run/sponsor</a> (please let me know if you decide to sponsor our team, as each sponsorship counts towards my fundraising goal!)<br /><br />Hugs,<br />KellyKellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com6tag:blogger.com,1999:blog-9150822652823135220.post-21978430220759237292011-12-23T08:59:00.002-05:002011-12-23T09:19:48.477-05:00Brooklyn's Hip<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHdrfJfS6wMn1xJUuUyPjBRjo5QgqPOADKX-UV_vAgH7pV-ZtrzDyttuAq-C9Jyvhgz4FUsF1HTfAj83xPEuMK_PmWY-NNp3xbcWkbUgUNrkU5fML79524G1bsuEB9EMBtuI4MSMx7UNhr/s1600/xray.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHdrfJfS6wMn1xJUuUyPjBRjo5QgqPOADKX-UV_vAgH7pV-ZtrzDyttuAq-C9Jyvhgz4FUsF1HTfAj83xPEuMK_PmWY-NNp3xbcWkbUgUNrkU5fML79524G1bsuEB9EMBtuI4MSMx7UNhr/s400/xray.jpg" alt="" id="BLOGGER_PHOTO_ID_5689323216374809858" border="0" /></a>We met with an Orthopedic Surgery team yesterday at Chicago's Shriner's Children's Hospital. First, I have to say I LOVE that place and everyone there - they were amazing with Brooklyn (and me.)<br />We had suspected that her hip was "out" we were not sure how much or how bad the situation was. It had been slowly working its way out over the past year or two - up until recently we were recommend to just wait.<br />However over the past 6-9 months it has seemed to gotten worse. Brooklyn stopped wanting to bear weight, she stopped sitting up on her own - she leans to the right pretty badly to take the weight off her left hip. We knew something needed to be done.<br />We were blessed to be introduced to the Shriner's here locally in Fort Wayne (thanks to Boston's OT!) who connected us with the team in Chicago, who we met yesterday.<br />We met with the doctor and his team, had xrays done and also met with both a physical therapist and a occupational therapist - each of whom were AMAZING!<br />As you can tell from the xray - her hip is entirely out of socket and has been for awhile by looking at the wearing of the "socket" HOWEVER - we are not too late - their plan is to do a little reconstruction on the pelvis - using bone from her femur - which will allow for the "ball" to go back into place.<br />They will be doing some work with her muscles as well while they are in there. To be honest I still have a few more questions regarding the surgery but realize, now that I am home, I was a little overwhelmed at the time and did not think of them all. Which is fine - we have a little while. I need to get clearance letters from Brooklyn's neurologist, gastroenterologist, pulminologist, an primary care doc. THEN surgery will be scheduled. Two weeks prior to surgery we will go over for labs and at that time we will be able to sit down once again with the team to go over any questions. It was also recommend to be by another rett mom that while I was there I should donate blood so that they can use my blood if needed for transfusion. (thank you for that suggestion) I wish Chicago was a bit closer - three hours and a time change for us, but I truly feel that she is in great hands there.<br />I have had lots of "newer" rett moms ask me HOW? WHY? Can we avoid this with our girls? I am by NO MEANS a doctor but for Brooklyn I do believe a lot of it has to do with the fact that she was never an independent walker - there was never a ton of weight bearing - muscle building going on with her. That combined with the fact that I believe some girls with Rett Syndrome are prone to certain things - it was probably going to happen anyway.<br />The GREAT news is that despite all of her leaning to the right - there is currently no curve - no scoliosis! Which I was super excited about! Her leaning is all muscle related so far - but also another reason to get the hips fixed!<br />Rett Syndrome has thrown us quite a few curve balls this year for sure but I will say it again - we will BEAT THIS - Brooklyn has Rett Syndrome - it DOES NOT HAVE HER!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com3tag:blogger.com,1999:blog-9150822652823135220.post-3913015860007189662011-12-20T14:50:00.004-05:002011-12-20T21:07:03.196-05:00Field Trip!Brooklyn's class has been saving their pennies for TODAY! They took all of their change into the bank and then used that money to buy goodies to take to our local animal shelter for the animals for Christmas - Brooklyn was PUMPED for today. (Although Grammy went too - which MIGHT have been part of the excitement - she LOVES her Grammy!)<br />Brooklyn chose a brush for the animals - this from a princess that LOVES to have her hair done - I am NOT surprised!<br />I only had one rule for her - DO NOT bring home a puppy!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9AnUCKXA8ZHCPSO9T18Z-2BHUQw_WxRnKiDhBVWR9kA8ZpArciwEd30bjRhlAB5ZmHf5JGQCwwPGzFROBrpxXmep5eeW9ozlroLbsypbTU8GDim8AFODtV-F7KCdwkKce60AN3PPoXDJz/s1600/104_2141.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9AnUCKXA8ZHCPSO9T18Z-2BHUQw_WxRnKiDhBVWR9kA8ZpArciwEd30bjRhlAB5ZmHf5JGQCwwPGzFROBrpxXmep5eeW9ozlroLbsypbTU8GDim8AFODtV-F7KCdwkKce60AN3PPoXDJz/s400/104_2141.JPG" alt="" id="BLOGGER_PHOTO_ID_5688302155310167746" border="0" /></a>I think she was looking for a loop hole in my rule - she was loving this kitten!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghhvnNq1Zs4-6T-Ew-43GuqO7m6vf5zkzyMIpGPqjfmEYFO1IG80KuSU0-IFf6vou8-UX5rW4ck6r-cPOBZ9tx1ckQ65mmun7ZIjY2YyLk0IoOGr5-MT6tXLFRYZ6qC5v3n-Np8HfN6_gV/s1600/104_2156.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghhvnNq1Zs4-6T-Ew-43GuqO7m6vf5zkzyMIpGPqjfmEYFO1IG80KuSU0-IFf6vou8-UX5rW4ck6r-cPOBZ9tx1ckQ65mmun7ZIjY2YyLk0IoOGr5-MT6tXLFRYZ6qC5v3n-Np8HfN6_gV/s400/104_2156.JPG" alt="" id="BLOGGER_PHOTO_ID_5688301578079706866" border="0" /></a>I am sure our 75 pound lab would love her too!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5yhyphenhyphen4IRGsb20__Kgy2SDSbFFjNQ6Xnrw6pQ4ctplEJNGmur8dbveWgL9I2ofZFRJtsICcR5lKMSmGOKqb60DdHAXE3yMChIYbh9kqN-RHMbUHVThcf3R58UoKidPByS3LORcbYmyDpokR/s1600/104_2159.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5yhyphenhyphen4IRGsb20__Kgy2SDSbFFjNQ6Xnrw6pQ4ctplEJNGmur8dbveWgL9I2ofZFRJtsICcR5lKMSmGOKqb60DdHAXE3yMChIYbh9kqN-RHMbUHVThcf3R58UoKidPByS3LORcbYmyDpokR/s400/104_2159.JPG" alt="" id="BLOGGER_PHOTO_ID_5688301574824367602" border="0" /></a>I know.....it WOULD be hard to say no to this face!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_CcJVZkj07mazmr6lMmozG28YSjcj5GCMz4SoJWhd9oujB326xNamtutnFjmQIlfQ6-Z4tY6BSkFwQfq-lRrqy5WN7DS6zOXs816PskuUG45XIPNa2hewHqDN9xh4U2hEVO5ssaSs-dn7/s1600/104_2168.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_CcJVZkj07mazmr6lMmozG28YSjcj5GCMz4SoJWhd9oujB326xNamtutnFjmQIlfQ6-Z4tY6BSkFwQfq-lRrqy5WN7DS6zOXs816PskuUG45XIPNa2hewHqDN9xh4U2hEVO5ssaSs-dn7/s400/104_2168.JPG" alt="" id="BLOGGER_PHOTO_ID_5688301564829176402" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLBCOXzCf1iO6XN23ahl_z3QJpALbDwrLw-9GOJH-zqE8t18UwwN_PhFQ78psvZimHBq8ED2zbCqF5cKb4UKkUg473LUgNickaOaXO23gc4IQzEkyy8c7vbs_K84L6dEQjQnm3lOWxwMDP/s1600/104_2173.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLBCOXzCf1iO6XN23ahl_z3QJpALbDwrLw-9GOJH-zqE8t18UwwN_PhFQ78psvZimHBq8ED2zbCqF5cKb4UKkUg473LUgNickaOaXO23gc4IQzEkyy8c7vbs_K84L6dEQjQnm3lOWxwMDP/s400/104_2173.JPG" alt="" id="BLOGGER_PHOTO_ID_5688301561448914306" border="0" /></a>She had a BLAST and the animals got spoiled today - it was a win/win!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2CPlt9iIgN9fTZb05puYheifA0focErn8a__FySiNV4IcmzuoH5r5X7SMS8vVH6u_wu6M2Bx_VGDgxh_4EHgOu9xQNlVOXu6NOIn-7x7E50Tdy2iFSHxLPiox2Y-MqT7WhiF6AOEc0eC1/s1600/104_2153.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2CPlt9iIgN9fTZb05puYheifA0focErn8a__FySiNV4IcmzuoH5r5X7SMS8vVH6u_wu6M2Bx_VGDgxh_4EHgOu9xQNlVOXu6NOIn-7x7E50Tdy2iFSHxLPiox2Y-MqT7WhiF6AOEc0eC1/s400/104_2153.JPG" alt="" id="BLOGGER_PHOTO_ID_5688301591730200530" border="0" /></a>(I have to admit - one of her favorite parts seems to have been riding the bus! Poor girl gets dropped off and picked up every day - we deprive her of this JOY on a regular basis...oops)Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com1tag:blogger.com,1999:blog-9150822652823135220.post-56861804260843923612011-12-14T21:07:00.004-05:002011-12-14T21:13:08.677-05:00"living with"<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://www.adaptivemall.com/livingwithbrooklyn.html"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 60px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-2quVuRwfLvQd_QhC5ycdplb8lf8Vmh96xbDTTS5mPTlTImN2MVc1Bi2BujJmNs_SqSBi7SdbvuDk67SDynmphkaiEBVO7wei88z82NvNHtxf1YR-djEwn5PjeQbCK8GmSc7uliyupule/s400/adaptive+mall.gif" alt="" id="BLOGGER_PHOTO_ID_5686171344081323234" border="0" /></a>AdaptiveMall.com is an amazing site filled with all kinds of adaptive equipment which is life changing for girls like Brooklyn! They also have a section of their site called "Living With" and this month the title is "Living With Rett Syndrome" and I think if you check it out you might recognize an adorable little someone :) Click <a href="http://www.adaptivemall.com/livingwithbrooklyn.html">H</a><a href="http://www.adaptivemall.com/livingwithbrooklyn.html">ERE</a> to check it out!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com0tag:blogger.com,1999:blog-9150822652823135220.post-15947632788778539902011-12-09T10:15:00.005-05:002011-12-09T10:44:02.434-05:002011 Christmas PlayBrooklyn and mommy before the play - we were SO PUMPED that she ended up having a great afternoon as was able to go after our morning was filled with seizures - thank you all for your prayers!!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-kbV2p6F0edgVtZy2TZAIVAZv_ze892DRpFqlA90_-RX4t9kDX2s1Tb8dRI7BAHhsyqb0vKtDqK3nHVysf_OXPovYyES1H9uoOv0vQCAhlj3bEvl5ldkRcZxSdTqPZrWPZYr4S0TUV7UP/s1600/before+play.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-kbV2p6F0edgVtZy2TZAIVAZv_ze892DRpFqlA90_-RX4t9kDX2s1Tb8dRI7BAHhsyqb0vKtDqK3nHVysf_OXPovYyES1H9uoOv0vQCAhlj3bEvl5ldkRcZxSdTqPZrWPZYr4S0TUV7UP/s400/before+play.jpg" alt="" id="BLOGGER_PHOTO_ID_5684154557992121970" border="0" /></a>This years Christmas Program was titled "The Perfect Christmas Recipe"<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHZOt5_GzMDYkLQBq7_9aDfyRj_E-VSlKwiLelZRLohMrIu6tBjdlWSlrf9ki8FHSahY6ASqjKuFyQDkhV9khlfMnVIzOQ8uBbUdp63Y9x_METZy-KmeMnyrD6Jir1rjZ-ZoJT6cogQKkI/s1600/104_2084.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHZOt5_GzMDYkLQBq7_9aDfyRj_E-VSlKwiLelZRLohMrIu6tBjdlWSlrf9ki8FHSahY6ASqjKuFyQDkhV9khlfMnVIzOQ8uBbUdp63Y9x_METZy-KmeMnyrD6Jir1rjZ-ZoJT6cogQKkI/s400/104_2084.JPG" alt="" id="BLOGGER_PHOTO_ID_5684151743357425890" border="0" /></a>OF COURSE Brooklyn is on the NICE list!!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk6pXsrN_E0udvntkAuEhB3oEnH4jc4C5SpJwfou4ehNk31YlIFkg4ZYroi53FhoSyl5kQnuoyKQ7_FnuXNm7oXomti2zcJaf3YS6sE48PCBT3J-RmPd5Ag2nTy3O8VmSF2CmQre3ERkOs/s1600/104_2000.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk6pXsrN_E0udvntkAuEhB3oEnH4jc4C5SpJwfou4ehNk31YlIFkg4ZYroi53FhoSyl5kQnuoyKQ7_FnuXNm7oXomti2zcJaf3YS6sE48PCBT3J-RmPd5Ag2nTy3O8VmSF2CmQre3ERkOs/s400/104_2000.JPG" alt="" id="BLOGGER_PHOTO_ID_5684151750661473458" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBWwlA6IWynLmGoMZ1K88qnXEZ1Z12zSK_IB_sytGpOelr9QFFnHjUJv5IGfOyqzfGL09WT79nRv-Bk33QklbaRaTpIN4LQsm_Q0v_wQg5VTCNW2vKVdibJASgC9bZo9JxTMRMK2eBV5yH/s1600/104_2001.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBWwlA6IWynLmGoMZ1K88qnXEZ1Z12zSK_IB_sytGpOelr9QFFnHjUJv5IGfOyqzfGL09WT79nRv-Bk33QklbaRaTpIN4LQsm_Q0v_wQg5VTCNW2vKVdibJASgC9bZo9JxTMRMK2eBV5yH/s400/104_2001.JPG" alt="" id="BLOGGER_PHOTO_ID_5684150115263429586" border="0" /></a>She was a Volkswagon Van for the "Life is a Highway" song - TOO CUTE! Bad timing with this picture - because the girl was grinning from ear to ear all night!!! (isn't that always the way!.?)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA3xHh4jCwcmGqw5v7LM5XfGlvyu1NK1QjNnE2a6avBclrCXDaCJgX6fFDx9EL4C9eAdHwOJ2q-2G7AEQUX4AIM0R1fxpKibvHqPSVCS17qspxlHBxkXUoJSVch0PG4ubSO5nljGCp_Peg/s1600/104_2056.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA3xHh4jCwcmGqw5v7LM5XfGlvyu1NK1QjNnE2a6avBclrCXDaCJgX6fFDx9EL4C9eAdHwOJ2q-2G7AEQUX4AIM0R1fxpKibvHqPSVCS17qspxlHBxkXUoJSVch0PG4ubSO5nljGCp_Peg/s400/104_2056.JPG" alt="" id="BLOGGER_PHOTO_ID_5684150108482647762" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXy7jNu0aimtLSQambFd7E1DuaAm1U0Eb5e1h6ZqT4Wnlh95OnZikVdXkjUruDYchku0ESNYjSdNAMwUkp4opSk4WpDxYRV5wjrfRAtrsPrSz8GgWTuNYRxsd0HmGJYOMiApeX3WSF9Sfz/s1600/102_1768.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXy7jNu0aimtLSQambFd7E1DuaAm1U0Eb5e1h6ZqT4Wnlh95OnZikVdXkjUruDYchku0ESNYjSdNAMwUkp4opSk4WpDxYRV5wjrfRAtrsPrSz8GgWTuNYRxsd0HmGJYOMiApeX3WSF9Sfz/s400/102_1768.JPG" alt="" id="BLOGGER_PHOTO_ID_5684148743830894402" border="0" /></a>Here she was getting ready to go in and play her part as "Cogsworth" from Beauty an the Beast. Her line was recorded on a switch. - She added "endurance" into the recipe :)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfx91GVE1xDY-lnCKGwW4B4GAtBBO3Hfn_G3MHGfjGN5WH6ri8ttFDtlxFxK0S4YpE2cT9QZVkrWyI8huhIxeWHyUpYgV5NrdyJVF3p4ioTF9Vz9r0J0Ezkx6lzjpcU-JwqkfgqWETx7Fu/s1600/104_2015.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfx91GVE1xDY-lnCKGwW4B4GAtBBO3Hfn_G3MHGfjGN5WH6ri8ttFDtlxFxK0S4YpE2cT9QZVkrWyI8huhIxeWHyUpYgV5NrdyJVF3p4ioTF9Vz9r0J0Ezkx6lzjpcU-JwqkfgqWETx7Fu/s400/104_2015.JPG" alt="" id="BLOGGER_PHOTO_ID_5684150104956845906" border="0" /></a>It was dark in there - hard to get a good pic!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiybKg2nXf7qOEuPWmVZhpUf5_C7gzhUYDc571cy42PGrrlEQFroGOtKvysOBLdyHWwJsgms3yqbx4fEop35jp8uOiv5e0HD5p8sl3G60OTaiyHJijz4ci-49TxOAKjlB9DvrdkXOiGhwc3/s1600/102_1751.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiybKg2nXf7qOEuPWmVZhpUf5_C7gzhUYDc571cy42PGrrlEQFroGOtKvysOBLdyHWwJsgms3yqbx4fEop35jp8uOiv5e0HD5p8sl3G60OTaiyHJijz4ci-49TxOAKjlB9DvrdkXOiGhwc3/s400/102_1751.JPG" alt="" id="BLOGGER_PHOTO_ID_5684148734346029858" border="0" /></a>Brookie during the group sing.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdgR3GhJhePLS-26Lsok42aVR3qZNH8OzEY1nYIQjvCB60VDYMrGfF67peT2Zh9SJ8QjhDEd-DjYtiiepACK2HHTiCe_qpriX-arss03PYI964dFUZSfVpcUWUd2Ltm2u_E_UYnId-8vbr/s1600/102_1782.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdgR3GhJhePLS-26Lsok42aVR3qZNH8OzEY1nYIQjvCB60VDYMrGfF67peT2Zh9SJ8QjhDEd-DjYtiiepACK2HHTiCe_qpriX-arss03PYI964dFUZSfVpcUWUd2Ltm2u_E_UYnId-8vbr/s400/102_1782.JPG" alt="" id="BLOGGER_PHOTO_ID_5684148725312290946" border="0" /></a>Brookie and Pappy :)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk2yVuoY8XSdx7FyMgZm2YU9y9nbbLiQuKbD4Toki1GuLabyCmbAHDI1-X5CkdM-k6rD08h2iI0DzNFV8YlMeoCvJBpeKqMOIe-L8kNCap17voOaofYZnpI_fQMshhk3v5oR0iXeSsmjx-/s1600/102_1790.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk2yVuoY8XSdx7FyMgZm2YU9y9nbbLiQuKbD4Toki1GuLabyCmbAHDI1-X5CkdM-k6rD08h2iI0DzNFV8YlMeoCvJBpeKqMOIe-L8kNCap17voOaofYZnpI_fQMshhk3v5oR0iXeSsmjx-/s400/102_1790.JPG" alt="" id="BLOGGER_PHOTO_ID_5684148718562115650" border="0" /></a>Her "star" poster outside the auditorium<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZAs_A0JdjPmc3PYuYCmWIJR6U27MRQ9EYgmwHqbi0OZ7YKOuc0Lmi242TkTXoE_6UnxJu7Wd40XjLKtij88zYCrvYH_4UmXlkKoAI9GUfMCuW1Nko71gnoDk1TibAaczV93zKgX7yux_I/s1600/102_1794.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZAs_A0JdjPmc3PYuYCmWIJR6U27MRQ9EYgmwHqbi0OZ7YKOuc0Lmi242TkTXoE_6UnxJu7Wd40XjLKtij88zYCrvYH_4UmXlkKoAI9GUfMCuW1Nko71gnoDk1TibAaczV93zKgX7yux_I/s400/102_1794.JPG" alt="" id="BLOGGER_PHOTO_ID_5684148714124970370" border="0" /></a>Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com4tag:blogger.com,1999:blog-9150822652823135220.post-87467324779284919752011-12-01T18:00:00.005-05:002011-12-01T20:07:07.937-05:00Neurologist Update<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfRZhrnu-ZeQnoll3SJZl65mOnV9UJAsYeQdy1Up5dQkHifZTvdGbfq4rNkhImXkr9pB05CqwZhkp_4EgQ9cXq0VUuyYWS7AJEIEvrV4UY5pSTBYlp9XPjnpPDrnMMhG4wrv8hO9FcpSc-/s1600/atmovies.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfRZhrnu-ZeQnoll3SJZl65mOnV9UJAsYeQdy1Up5dQkHifZTvdGbfq4rNkhImXkr9pB05CqwZhkp_4EgQ9cXq0VUuyYWS7AJEIEvrV4UY5pSTBYlp9XPjnpPDrnMMhG4wrv8hO9FcpSc-/s400/atmovies.jpg" alt="" id="BLOGGER_PHOTO_ID_5681300913463961266" border="0" /></a>I am happy to say that I truly liked the new neurologist. (an answer to PRAYER!)<br /><br />He wants to review the 72 hour video eeg for himself (instead of just relying on her former neuro's notes) Which I appreciate for sure. He wants to be certain what type or types of seizures they are. According my my description of them he feels they are tonic seizures. He is afraid that she might be having a couple different types of seizures and feels more comfortable reviewing the eeg to be sure.<br /><br />For now we are doing 3ml Keppa in the am and 3 ML in the pm. He is not sure Keppra is the right drug.<br /><br />Rett families - He mentioned that Tonic seizures can be tough to manage and mentioned the drug Banzel. Do any of your kiddos have experience with Banzel?<br /><br />(sorry for the old picture but this post needed her cute smile don't ya think?!?!)Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com3tag:blogger.com,1999:blog-9150822652823135220.post-58822954653136502252011-11-28T20:54:00.000-05:002011-11-28T20:58:55.108-05:00Game ON!Brooklyn was BELLY LAUGHING today while Sarah and Lauren were here - I just LOVE those giggles....I think it was because she was winning!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt_gWMgKxQrvUu_bqFZltxv7zgdd1BuLbag8WXq-qkxVTlYitifb_4v_o6O9ZxgILpr_RtnrpMGzVm5Mp0lzJdscwZFRKC52EQKTUuwQTHW6slNz0WnN46ewXIrRlQO22GOrAGLX1W6E3X/s1600/102_1715.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt_gWMgKxQrvUu_bqFZltxv7zgdd1BuLbag8WXq-qkxVTlYitifb_4v_o6O9ZxgILpr_RtnrpMGzVm5Mp0lzJdscwZFRKC52EQKTUuwQTHW6slNz0WnN46ewXIrRlQO22GOrAGLX1W6E3X/s400/102_1715.JPG" alt="" id="BLOGGER_PHOTO_ID_5680231068132629730" border="0" /></a>Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com0tag:blogger.com,1999:blog-9150822652823135220.post-31224812509528586362011-11-23T17:00:00.000-05:002011-11-23T17:00:04.006-05:00I am thankful for all of my family and friends who support my efforts to find a cure!! Your investment and belief in what is possible for Brooklyn and all the girls living with Rett Syndrome means more than I can ever say. I hope you will take a moment and read through the GP2C 2011 Gratitude Report. THANK YOU!!!<br /><div><object classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" style="width:420px;height:162px" id="4a3f502f-86cd-abd5-6a94-08aa6d3a4e32"><param name="movie" value="http://static.issuu.com/webembed/viewers/style1/v2/IssuuReader.swf?mode=mini&backgroundColor=%23222222&documentId=111123031121-ea38d781aa644e268d777ca10645133c"><param name="allowfullscreen" value="true"><param name="menu" value="false"><param name="wmode" value="transparent"><embed src="http://static.issuu.com/webembed/viewers/style1/v2/IssuuReader.swf" type="application/x-shockwave-flash" allowfullscreen="true" menu="false" wmode="transparent" style="width:420px;height:162px" flashvars="mode=mini&backgroundColor=%23222222&documentId=111123031121-ea38d781aa644e268d777ca10645133c"></embed></object><div style="width:420px;text-align:left;"><a href="http://issuu.com/girlpower2cure/docs/2011-gp2c-gratitude-report?mode=window&backgroundColor=%23222222" target="_blank">Open publication</a> - Free <a href="http://issuu.com/" target="_blank">publishing</a> - <a href="http://issuu.com/search?q=rett%20syndrome" target="_blank">More rett syndrome</a></div></div>Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com0tag:blogger.com,1999:blog-9150822652823135220.post-70014844793145108542011-11-23T12:49:00.002-05:002011-11-23T13:09:23.817-05:00Happy Thanksgiving!Last year I wrote <a href="http://brooklynbutler.blogspot.com/2010/11/happy-thanksgiving.html">THIS</a> post about Thanksgiving. Lots of great positive stuff there!<br /><br />I have to be honest. I have been in front of this computer a few times now starting my Thanksgiving post and I stop each time. 2011 has been a tough one for me.<br /><br />My ex had a new baby girl and our divorce was final (after 15 long months)<br />Brooklyn required feeding tube surgery<br />Brooklyn had her first trip to the ER via ambulance<br />My kids lost their insurance<br />Brooklyn started having seizures<br /><br />This is not your typical "thankful" list for sure.<br /><br />BUT....if I REALLY look at the list, my attitude changes.....Because of the divorce I have been able to officially close the door on that chapter of my life, begin to heal and move forward. Brooklyn's feeding tube had made her 24 pound weigh-<span class="blsp-spelling-error" id="SPELLING_ERROR_0">in's</span> a thing of the past - not to mention no more yucky tasting <span class="blsp-spelling-error" id="SPELLING_ERROR_1">meds</span>, they can all go through the tube AND no more horrific gas pain - we can vent her anytime! Her trip to the ER as we were surrounded by family, friends, and also her teacher and principal reminded me to be thankful that she is one SUPER LOVED little girl and that she has an amazing team at school cheering her on and supporting her (and me!) Due to insurance changes the kids lost their insurance but were both approved for disability medicaid (which of course is something I have a love/hate relationship with.) It allows me to not worry that medically my kids are provided for. As far as the seizures go - there is no real thanks for those honestly - but thankful for modern medicine and medical staff that help us take care of her needs!<br /><br />SO yes, I am thankful.<br /><br />As I continue to write I am flooded with more amazing things - <a href="http://www.bostonclarkbutler.blogspot.com">Boston</a> took his first steps this year, he said <span class="blsp-spelling-error" id="SPELLING_ERROR_2">mamma</span> for the first time, and started sleeping through the night in his own bed (well - not every night but SOME nights!)<br />Brooklyn although physically has had a rough year has been such a blessing - she LOVES going to school and to church and loves when her college buddies come over. She is such a joy to be around - she has a smile that can light up the darkest of days!<br /><br />Yep.<br /><br />I am thankful.Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com1tag:blogger.com,1999:blog-9150822652823135220.post-25091860618181311582011-11-15T17:12:00.001-05:002011-11-15T17:14:28.228-05:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://us1.campaign-archive2.com/?u=b883f2a60461b6aa07d0011a7&id=c9ce633948&e=fd88b2f957"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKR1scSctu_2pt3EuJicx4XgpU0Xzy8HUMWw5QHTg-rEk-KC_rU0ejx22jCQeHKAajOTlwPn8gB6xVDvbY5m2UVKz19cxVKQfdSuH2nudstaxMDVWZAp5KqO8p43Yb52fzBHy3FUZyYVGV/s400/EMAIL_birthday.jpg" alt="" id="BLOGGER_PHOTO_ID_5675349068456118866" border="0" /></a>Click on the photo above to read more about all the amazing things that <a href="http://www.girlpower2cure.org">Girl Power 2 Cure</a> is doing! I am so honored to be a part of such an amazing organization - HAPPY BIRTHDAY GP2C!!Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com0tag:blogger.com,1999:blog-9150822652823135220.post-63604924954302332602011-11-13T15:23:00.002-05:002011-11-13T15:31:07.825-05:00Some things never change!1994 I headed off to Cincinnati Bible College where I met five amazing girls - we spent the next four years playing such a huge part in each others lives....we laughed, we cried, we made memories! <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgevIrfTLc9bnxGgOwrrtYdr__ou_8cT6SBRLrM3n2XKoOytNKpIzQxuU-kNGGmrjlUzNYZ8_zMZNNfQhqE6KmpG7jKLsFnTJNgln9E6G7wF8MN5mWNb245CMGz6P3WcrS9rxH0K0khlDbf/s1600/six1998.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgevIrfTLc9bnxGgOwrrtYdr__ou_8cT6SBRLrM3n2XKoOytNKpIzQxuU-kNGGmrjlUzNYZ8_zMZNNfQhqE6KmpG7jKLsFnTJNgln9E6G7wF8MN5mWNb245CMGz6P3WcrS9rxH0K0khlDbf/s400/six1998.jpg" alt="" id="BLOGGER_PHOTO_ID_5674579003345514130" border="0" /></a>Here we are eighteen years later, still laughing (and supporting each other through the crying) and making memories - amazing, smiled filled memories! Thank you Danielle, Kati, Susy, Shannon, & Jen for being in my life then and now! I love you all!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL7MHsIYS4oJSY0elvK1jTpYTl6HCEKvXUUWifT6M1bvAEVn9naQDvIsYhk8SgVSt6BbGEgg0rG2gyq05CXosqryUN1Y7Q-rfRGNfauP7sMKDd8z2xmoNYGXHZZv6zyFD2MENA6oSucxoz/s1600/six2011.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL7MHsIYS4oJSY0elvK1jTpYTl6HCEKvXUUWifT6M1bvAEVn9naQDvIsYhk8SgVSt6BbGEgg0rG2gyq05CXosqryUN1Y7Q-rfRGNfauP7sMKDd8z2xmoNYGXHZZv6zyFD2MENA6oSucxoz/s400/six2011.jpg" alt="" id="BLOGGER_PHOTO_ID_5674579001985307698" border="0" /></a>(and thanks to Brian for recreating our photo for us!)Kellyhttp://www.blogger.com/profile/13680795280261614317noreply@blogger.com2