tag:blogger.com,1999:blog-73947945794089656922024-03-13T15:44:04.982-07:00Sophie's JourneyLiz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-7394794579408965692.post-89221354718377329522013-03-13T16:19:00.000-07:002013-03-13T18:33:08.029-07:00Sophie's Second BirthdayOn March 12th, 2013, Sophie would have been 2 years old. It is crazy to think how much has happened since the day of her birth: the amazing feeling that comes along with being parents for the first time -- bringing Sophie home and getting into a routine -- a few weeks later noticing that her muscles seemed weak -- a few weeks after that getting her SMA diagnosis -- making the next handful of months as happy and comfortable as possible for her (while at the same time being so scared that she would suffer) -- having to say goodbye -- traveling to Cambodia to volunteer in a clinic for orphans with disabilities, becoming pregnant with our second baby (who does not have SMA) -- the birth of our second child -- and since then taking each day one at a time. It all seems surreal. <br />
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We wish more than anything that we could have Sophie with us, in a healthy non-SMA body. At the same time, it almost feels selfish to feel that way. Our hope is that she is somewhere amazing right now, spending time with those who have gone before us, watching over her little sister. We miss her more now than even the first day she passed. We will continue to try living better lives because of her. Grief is a never ending process, overwhelming at times, but somehow we push through. We think of the mental and emotional strength that Sophie had and that drives us to keep on going.<br />
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For Sophie's second birthday, we decided to visit several of the spots that we frequented with her including: her favorite resteruant (it was her favorite because there were ceiling fans right over the tables), the tree that was planted in honor of her, the plaque that was put up in memory of her, and the zoo. At the end of the day, we had an Elmo cake that we let Evelyn (her little sister) enjoy. Sophie and Evelyn definitely look like sisters! Pictures below show our day and Sophie is the one with the 'love you' onesie in the first set of pictures and in the second set you can see us holding her the day she was born. <br />
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We will post again (hopefully soon) regarding some of the projects we've been working on which include an SMA study, a hospice related research study, and advocacy work for SMA carrier screening. <br />
<br />Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com0tag:blogger.com,1999:blog-7394794579408965692.post-71203985354899075872012-10-23T10:18:00.003-07:002012-10-23T10:18:28.886-07:00Sophie is a big sister!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Our sweet little Evie</td></tr>
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On September 24th, 2012, Sophie became a big sister! Evelyn Kathleen Terhorst ('Evie') was born at 38 weeks along weighing in at 6 pounds and 7 ounces. She is an absolute sweetheart and we are loving every single second with her. Evie does NOT have SMA and this was confirmed at 10 weeks in-utero with a CVS test (a small piece of the placenta was taken to test her DNA). <br />
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As you can imagine, there have been emotional times with the pregnancy and since Evie was born...it's impossible not to remember the different stages we went through with Sophie. We miss Sophie like crazy and this will always be the case no matter how many children we have. Sophie was an amazing little soul and the presence of Evie has not made the loss of Sophie any easier. With that said, we are beyond happy to have the chance to be parents again! Evie will always know she has a big sister looking out for her, even if Sophie is not here in the physical sense. <br />
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Please do not feel bad or uncomfortable asking us questions about Sophie, Evie, CVS testing, SMA, etc. We are more than happy to share our story and our thoughts. We want to keep Sophie's memory alive and spread awareness about SMA. We will continue to update this blog with pictures of Evie and SMA related information! <br />
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<tr><td class="tr-caption" style="text-align: center;">Almost here! Evie gave her mama a very easy labor!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Proud Daddy!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Nonnie made it to the hospital about an hour after Evie arrived; she also helped us out the first week at home which was great!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sleeping soundly</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Already a Daddy's girl</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">After our first sleepless night:)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bella posing with her new housemate</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Ready for her first walk through the neighborhood and by Sophie's tree</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYuEN_vcBUroH8tDLbFYOlyI0mbjOc_F_nv9hVm8Uk2L7TYwbmJETsEYqx10p0P9DHH-Is6snda3NJFT-H6X-wpwFpFBdIFrfyiGUFmLuZryEqogdKcCohj0opdtRL1woAEaRNXkEJGKFA/s1600/DSC01328.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYuEN_vcBUroH8tDLbFYOlyI0mbjOc_F_nv9hVm8Uk2L7TYwbmJETsEYqx10p0P9DHH-Is6snda3NJFT-H6X-wpwFpFBdIFrfyiGUFmLuZryEqogdKcCohj0opdtRL1woAEaRNXkEJGKFA/s320/DSC01328.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She is currently sleeping a lot, but here is one with her eyes open</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Godparents Uncle Joel and Aunt Carla</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Grandpa Stan and Grandma Nancy</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Grandma Mary and Grandpa Gene</td></tr>
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<br />Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com3tag:blogger.com,1999:blog-7394794579408965692.post-41680338686905440642012-07-23T19:46:00.000-07:002012-07-23T19:50:28.791-07:00Celebration of Sophie's Life and Fundraiser for SMAWe meant to write this post several weeks ago, but better late than never!<br />
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On June 16th, we held a 'Walk and Roll' event to celebrate Sophie's life and raise awareness and funding for SMA. The event took place in Lincoln Park, were we took Sophie on daily walks. The start and finish line were located at a tree that was planted in memory of Sophie and participants had the option of waking either a 1 or 2 mile loop. Afterwards we had a catered bbq which allowed everyone to mingle and remember Sophie. Since Sophie loved Elmo, participants wore Elmo t-shirts and carried a red carnation during the walk (which everyone laid by her tree at the finish line).<br />
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We had an incredible turn out and a great day for the event, and can't thank everyone enough for the great support. Proceeds went to 'Families of SMA' (FSMA) which is a great organization which provided amazing support to us throughout Sophie's life. We could never have expected this, but our generous family, friends and co-workers donated ~ $40,000! This will help countless families who are given the horrible 'SMA' diagnosis, as well as provide money towards research for a cure!<br />
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Below are some pictures of our day: <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAIZyopyeN0T8YiBbpcqrrSfVhhyphenhyphenZeBLrl-GrbbWcVrZ_AjzNEg12kVsPlmxc05IbKLpqolHIppriN7OWtvS2Kx52Rm9xVsM62iUnqtgZ4VoXqwagvoF59SbEiM0WvVVxIKBoYarIBwd83/s1600/DSC01113.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAIZyopyeN0T8YiBbpcqrrSfVhhyphenhyphenZeBLrl-GrbbWcVrZ_AjzNEg12kVsPlmxc05IbKLpqolHIppriN7OWtvS2Kx52Rm9xVsM62iUnqtgZ4VoXqwagvoF59SbEiM0WvVVxIKBoYarIBwd83/s320/DSC01113.JPG" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4ac2b5vyK2wgNA1gQzk1NRqqJAXunBDlxKdwqiwZTBfBp0Ip0maezJBl4Ta54nugjdQOXsZRgXEf1WaonA_r_Cb_7bPhIhx2xl9Z7cf3EtzT72dXqva27XtazPUz_gWIH7xsUPSKM0o9P/s1600/DSC01095.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4ac2b5vyK2wgNA1gQzk1NRqqJAXunBDlxKdwqiwZTBfBp0Ip0maezJBl4Ta54nugjdQOXsZRgXEf1WaonA_r_Cb_7bPhIhx2xl9Z7cf3EtzT72dXqva27XtazPUz_gWIH7xsUPSKM0o9P/s320/DSC01095.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sophie's Memorial Tree</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwJoq4HNQ-JNavTiFt89DzDhDz4349TqwBdWVMZMXf3d4hMqaXIbJJnegqMR2HzXAL4p1okJOFTI6rMaJN5bFNZxTtADZYVIn7sBNo48zdahn5sD6_DHBd8-QUw8Prl3DyF6_qWP9O712m/s1600/DSC01101.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwJoq4HNQ-JNavTiFt89DzDhDz4349TqwBdWVMZMXf3d4hMqaXIbJJnegqMR2HzXAL4p1okJOFTI6rMaJN5bFNZxTtADZYVIn7sBNo48zdahn5sD6_DHBd8-QUw8Prl3DyF6_qWP9O712m/s320/DSC01101.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Flowers that participants laid by Sophie's tree at the finish line</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj01uN8UN-eMHXXsWxxwaogPUkIjfNEllxSYDQ69AnTUhcTYC5dxpSuwpUq6PQkGvGoWr8yBdlGSwi0FvRPODm7Vuc8l4zdOENGDZytnLR5U9OFRWo_Sikja2reHwDviyg3AjUAMr_dlRkX/s1600/walk.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj01uN8UN-eMHXXsWxxwaogPUkIjfNEllxSYDQ69AnTUhcTYC5dxpSuwpUq6PQkGvGoWr8yBdlGSwi0FvRPODm7Vuc8l4zdOENGDZytnLR5U9OFRWo_Sikja2reHwDviyg3AjUAMr_dlRkX/s320/walk.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking along the course</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRK_nTJ8X-X1ztLjtdcql_UyGmo-XE2FNS4ozyBl1B5qNFoNt9LCl5EumPYeq8sMkLFDChGgKEojqq6bQlsoOOgYvJ1rQDwpZpHhjy0xMmKrNT7NuKuXuCR-qA4GzbqDNSjNST_JK84UDp/s1600/elmopicdoll.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRK_nTJ8X-X1ztLjtdcql_UyGmo-XE2FNS4ozyBl1B5qNFoNt9LCl5EumPYeq8sMkLFDChGgKEojqq6bQlsoOOgYvJ1rQDwpZpHhjy0xMmKrNT7NuKuXuCR-qA4GzbqDNSjNST_JK84UDp/s320/elmopicdoll.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Elmo dolls for the little ones</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM7iodPE_0pJ1S7VDWrfkBA-fxUeQWtHpi12rxfJQHxFKwboMQujyEq2Z8GW_Ru0aTIk8Vrc_1PpVG_1_Qquv6ZRAwrJzo5IuRVhW6SVYywe9ZUGdgMDe4V72YiFJtv_KdqBO0OunzthNR/s1600/signwalk.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM7iodPE_0pJ1S7VDWrfkBA-fxUeQWtHpi12rxfJQHxFKwboMQujyEq2Z8GW_Ru0aTIk8Vrc_1PpVG_1_Qquv6ZRAwrJzo5IuRVhW6SVYywe9ZUGdgMDe4V72YiFJtv_KdqBO0OunzthNR/s320/signwalk.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This way!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9hyREYNU8mr95DZqzATN3vM0uPy_FJrUjDSDE8XMmUiw8Kt9SIZ3RO-ZVW3Ue2F2RNAPiyFzqbdAr45ZkDsV5DkV5k8_VjysQE7goyF530PfMcFrv10xeddnhqPYtp9zLxEcjPZzaUJQj/s1600/DSC01015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9hyREYNU8mr95DZqzATN3vM0uPy_FJrUjDSDE8XMmUiw8Kt9SIZ3RO-ZVW3Ue2F2RNAPiyFzqbdAr45ZkDsV5DkV5k8_VjysQE7goyF530PfMcFrv10xeddnhqPYtp9zLxEcjPZzaUJQj/s320/DSC01015.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nonnie</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZbWiYxgBAQiXEAqojFRdz3FzwD2kuwkqu0OFdPpY0uGnrHih88fifIt9W2Q6BDyAX3_Mgy87jWnSxMv1sutYqJwH4jLATiSBlOcXw1hN1mw8jVyRya2kyBkEiEEZj5nT_a1YXGws3ZxIv/s1600/DSC01001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZbWiYxgBAQiXEAqojFRdz3FzwD2kuwkqu0OFdPpY0uGnrHih88fifIt9W2Q6BDyAX3_Mgy87jWnSxMv1sutYqJwH4jLATiSBlOcXw1hN1mw8jVyRya2kyBkEiEEZj5nT_a1YXGws3ZxIv/s320/DSC01001.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandpa Stan and Grandma Nancy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr41Lt5D3uZZUf4V0i4rA5qjkEyWGGFff4fpZ-1akOyA4fa8tggpolswetuZxAFbyQRZandTfXYwR4k3ca68EHR2ymnVl4r8hAAXfNkEfXeoTL0Gu8O9YjgVwYolLUdoEvgQTTCyyKmoDa/s1600/DSC01040.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr41Lt5D3uZZUf4V0i4rA5qjkEyWGGFff4fpZ-1akOyA4fa8tggpolswetuZxAFbyQRZandTfXYwR4k3ca68EHR2ymnVl4r8hAAXfNkEfXeoTL0Gu8O9YjgVwYolLUdoEvgQTTCyyKmoDa/s320/DSC01040.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Uncle Craig, Aunt Breanne and cousin Harper</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3TJX7AsSuXwHGzzRmavXPKvnJXMN5Ty8exsvl8-VOKtcS-rz0km_N0z65Tj1xk55ZTJAzeGZeQ2j3qSF8vqGOVm5II6en3PmT-7BvCYjaR7TmFStV4ibApf7VLFmoji30LmIBAlaGjgfm/s1600/DSC00984.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3TJX7AsSuXwHGzzRmavXPKvnJXMN5Ty8exsvl8-VOKtcS-rz0km_N0z65Tj1xk55ZTJAzeGZeQ2j3qSF8vqGOVm5II6en3PmT-7BvCYjaR7TmFStV4ibApf7VLFmoji30LmIBAlaGjgfm/s320/DSC00984.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Uncle Joel and Aunt Carla</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1zRxDzBX7A19GoC6bZ8brpsOGw6ll3bIsVnJbaONdTB_I6LNsi-yRX102ldVEb6Zo0LHTjLjNBLYkVVCGhlnHvD8_ygFCyso91ucHBLxXW8WnLYZXcgbKzJ2T1yL558tzTNh49u6TLDpI/s1600/brad.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1zRxDzBX7A19GoC6bZ8brpsOGw6ll3bIsVnJbaONdTB_I6LNsi-yRX102ldVEb6Zo0LHTjLjNBLYkVVCGhlnHvD8_ygFCyso91ucHBLxXW8WnLYZXcgbKzJ2T1yL558tzTNh49u6TLDpI/s320/brad.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Uncle Brad, Aunt Jenny, Cousin Zoe, Cousin Tag</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE8AzspTqgkuUA2Pv2I-bpzRd1nazIWOcI78ZacjLv3uEKY2fbOEfToY6mMN3zJlD32bX13GqCWk9P3AnGXlm9ZNL5xdaC6ZUqcORNDNYNy9IZ0jvjjuUL2dQZzEqP1fNEjGvDGTlComLD/s1600/terhorsts.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE8AzspTqgkuUA2Pv2I-bpzRd1nazIWOcI78ZacjLv3uEKY2fbOEfToY6mMN3zJlD32bX13GqCWk9P3AnGXlm9ZNL5xdaC6ZUqcORNDNYNy9IZ0jvjjuUL2dQZzEqP1fNEjGvDGTlComLD/s320/terhorsts.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandma and Grandpa TerHorst, Aunt Katie, Cousin Emma, Great Aunt Janet and Great Uncle David</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHjE7UNb8vKyKzCDFOxetdw-rOnF0jq4xcRy_3uwTV1ofwPFWjT5j_gwWOrcbbcJjuzuQb0e6uivrRuxnaElS6P92wNNkL13kELEQM-ElzKwrEbbWaVV1pCeQ70pBDiiBCEa2eIn63j21b/s1600/DSC01014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHjE7UNb8vKyKzCDFOxetdw-rOnF0jq4xcRy_3uwTV1ofwPFWjT5j_gwWOrcbbcJjuzuQb0e6uivrRuxnaElS6P92wNNkL13kELEQM-ElzKwrEbbWaVV1pCeQ70pBDiiBCEa2eIn63j21b/s320/DSC01014.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Great Aunt Cooke, Great Grandma Gerber</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKibnK24u8fw_eqB9l-20MR-Z3uSXM48yjhMhjGfONHZjjMc4t82FNOyYnewMQyY2lYY17yNYnurQ53wWB7QHatH187ih7B2VA3YQTigiqivPwjKMRZ5lZRDYrFDrGXtyHowD5wVOsodPF/s1600/katie.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKibnK24u8fw_eqB9l-20MR-Z3uSXM48yjhMhjGfONHZjjMc4t82FNOyYnewMQyY2lYY17yNYnurQ53wWB7QHatH187ih7B2VA3YQTigiqivPwjKMRZ5lZRDYrFDrGXtyHowD5wVOsodPF/s320/katie.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Katie and Aaron</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2lqa1Ajn7ld7cR2d4ajddCrtAaBpy09TgP8-gRIxvnppDtgQtj1T8cm8gkhrP8Ld8gJ5IXrr3gmYlEOdZv_YyjKeGtlmXofmktPeadqZYea03HVONe26IB7ZdcEjdkFEPztheNyUWd5wU/s1600/IMG_4032.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2lqa1Ajn7ld7cR2d4ajddCrtAaBpy09TgP8-gRIxvnppDtgQtj1T8cm8gkhrP8Ld8gJ5IXrr3gmYlEOdZv_YyjKeGtlmXofmktPeadqZYea03HVONe26IB7ZdcEjdkFEPztheNyUWd5wU/s320/IMG_4032.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The star of the show, Sophie, thanks everyone for participating and supporting SMA!</td></tr>
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<br />Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com0tag:blogger.com,1999:blog-7394794579408965692.post-17564040892794220172012-05-29T04:15:00.001-07:002012-05-30T04:12:25.377-07:00SMA Testing Options<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt;">
<span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">It’s been a little over a year since we received Sophie’s diagnosis, or “d-day” as referred to in the SMA community.</span></span></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">As we reflect back on how we got to that dreadful day, we often come back to the same thought… one that has been described by many other families in the SMA community:<span style="mso-spacerun: yes;"> </span><u>No parent should find out that they are a carrier for SMA for the first time at the moment when their child receives the diagnosis</u>.</span></span></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">What do we mean by that?<span style="mso-spacerun: yes;"> </span>Well, for those new to SMA:</span></span></span></div>
<div class="MsoListParagraph" style="line-height: normal; margin: 0in 0in 3pt 0.5in; mso-list: l4 level1 lfo1; text-indent: -0.25in;">
<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">It is recessive hereditary disease – meaning that parents who carry the ‘abnormal’ gene that causes SMA do so unknowingly unless they have been tested.</span></span></span></div>
<div class="MsoListParagraph" style="line-height: normal; margin: 0in 0in 3pt 0.5in; mso-list: l4 level1 lfo1; text-indent: -0.25in;">
<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">Sophie had SMA because both of us are ‘carriers’ for the disease – meaning we each have one normal, and one abnormal, SMA related gene (SMA only impacts a person if both of their genes are abnormal).<span style="mso-spacerun: yes;"> </span>However, we were never offered ‘carrier screening’ before or after Sophie was conceived, and each of us unknowingly passed the abnormal gene to Sophie.</span></span></span></div>
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<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">If both parents are carriers for SMA, there’s a 25% chance any child from them would have SMA.</span></span></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">As highly effective carrier screening tests have been available for over 10 years:</span></span></span></div>
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<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">Adults should be tested to see if they are a carrier for SMA (and other recessive diseases such as Cystic Fibrosis) either pre or post conception.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "Courier New"; font-size: 12pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">Testing is available through a local OB-GYN or genetics group.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "Courier New"; font-size: 12pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">The female is typically tested first - if she has one abnormal gene, the male is then tested to see if they are both carriers.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "Courier New"; font-size: 12pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">Baby can also be tested early in the pregnancy.</span></span></span></div>
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<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">Post conception testing is very important if both parents are carriers: (i) If baby has SMA and pregnancy is continued, a care plan and resources can be lined up before birth; (ii) If baby does not have SMA, parents are now aware of the risk of SMA and options for future pregnancies.</span></span></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">So, given that effective carrier screening is available – even if it is not well utilized by the general public due primarily to a lack of awareness of SMA amongst the general public and medical communities (a disappointing reality that we’re focused on changing) – this means:</span></span></span></div>
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<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><b style="mso-bidi-font-weight: normal;"><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">A parent should find out that they are a carrier for SMA when they are tested… not when it’s too late and they have a child who has been diagnosed with it.</span></span></b></span></div>
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<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><b style="mso-bidi-font-weight: normal;"><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">SMA is nearly 100% preventable.<span style="mso-spacerun: yes;"> </span>That’s right, preventable.</span></span></b></span></div>
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<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><b style="mso-bidi-font-weight: normal;"><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">~1 in 40 people are carriers for SMA.<span style="mso-spacerun: yes;"> </span>This means there are likely a number of carriers in your own neighborhood, workplace, grocery store, etc.<span style="mso-spacerun: yes;"> </span>Do you know if you are a carrier?</span></span></b></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">For those who are new to SMA, here are a few links that provide more information on Sophie’s Journey and SMA:</span></span></span></div>
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<span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="color: black;">·<span style="font: 7pt "Times New Roman";"> </span></span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">Initial entry to our blog after receiving Sophie’s diagnosis that explained more about SMA and our approach for Sophie’s care:</span><span style="mso-spacerun: yes;"> </span></span></span><a href="http://sophies--journey.blogspot.com/2011/05/sophie-our-beautiful-daughter-sophia.html"><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">http://sophies--journey.blogspot.com/2011/05/sophie-our-beautiful-daughter-sophia.html</span></span></a><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"></span></div>
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<span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="color: black;">·<span style="font: 7pt "Times New Roman";"> </span></span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">Claire Altman Heine Foundation website, which provides not only basic information on SMA, but also terrific information on carrier screening:</span><span style="mso-spacerun: yes;"> </span></span></span><a href="http://www.clairealtmanheinefoundation.org/"><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">http://www.clairealtmanheinefoundation.org/</span></span></a><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"> </span></span></div>
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<u><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">How can people help raise awareness for this terrible disease and the availability of carrier screening option?</span></span></span></u></div>
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<span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="color: black;">·<span style="font: 7pt "Times New Roman";"> </span></span></span></span><span style="font-family: Calibri;"><span><span style="color: black;">See link for a one page summary on Sophie’s Journey, SMA, and carrier screening:</span><span style="mso-spacerun: yes;"> </span><a href="https://docs.google.com/open?id=0ByfQMyWzNQU-aV9DU0dhYnhhd0E">https://docs.google.com/open?id=0ByfQMyWzNQU-aV9DU0dhYnhhd0E</a> </span></span></div>
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<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-family: Calibri;"><b style="mso-bidi-font-weight: normal;"><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;">Please pass this attachment (and/or broader message) along to your friends, family and anyone expecting or considering having children.</span></b><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="mso-spacerun: yes;"> </span>Increasing awareness for the disease is crucial to increasing the number of carrier screening tests that will be performed, which will directly help prevent other babies from suffering from SMA.</span></span></span></div>
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<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><b style="mso-bidi-font-weight: normal;"><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">Please discuss SMA with your OB-GYN during your next routine appointment (or sooner!) and encourage them to discuss carrier screening options with the general public.</span></span></b></span></div>
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<span style="color: black;"><span style="font-family: "Courier New"; font-size: 12pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Courier New";"><span style="mso-list: Ignore;">o<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">While the American College of Medical Genetics and Genomics recommends SMA carrier screening for everyone, others in the medical community (including some OB-GYNs) are not as aware of SMA, its devastating impact on children, and the carrier screening options that are available.<span style="mso-spacerun: yes;"> </span>Please help us change that!</span></span></span></div>
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<span style="color: black;"><span style="font-family: Symbol; font-size: 12pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt "Times New Roman";"> </span></span></span><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">Please let us know if you have any questions or ideas to help increase awareness for SMA and the carrier screening options.</span></span></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">Thank you for all of your continued support!</span></span></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"><span style="color: black;">- Liz & Mike TerHorst</span></span></span></div>
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<span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">- </span></span><a href="mailto:lizterhorst@gmail.com"><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">lizterhorst@gmail.com</span></span></a><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"> or </span></span><a href="mailto:michael.terhorst@gmail.com"><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;">michael.terhorst@gmail.com</span></span></a><span style="font-size: 12pt; mso-bidi-font-size: 11.0pt;"><span style="font-family: Calibri;"> </span></span></div>
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<br /></div>Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com1tag:blogger.com,1999:blog-7394794579408965692.post-80428401198877552822012-04-12T12:17:00.003-07:002012-04-12T12:22:10.878-07:00Registering for Sophie's Memorial WalkPlease see the last post for more information, but the following is the link for Sophie's Memorial Walk/SMA Fundraiser which we be held on Saturday, June 16th! We hope to see you there. Feel free to email if you have any questions:<br /><a href="http://www.fsma.org/sophieterhorst"><br />www.fsma.org/sophieterhorst</a><br /><br />for questions: lizterhorst@gmail.com<br /><br />Thank you!Lizhttp://www.blogger.com/profile/16003719439113063915noreply@blogger.com0tag:blogger.com,1999:blog-7394794579408965692.post-71797257992278534482012-03-26T08:59:00.000-07:002012-03-26T08:59:15.345-07:00Sophie's Walk & Roll for SMA -- Save the Date! (June 16, 2012)<div class="MsoNormal" style="margin: 0in 0in 0pt;">
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<span style="mso-no-proof: yes;">Hi everyone,</span></div>
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<span style="mso-no-proof: yes;">First off, we’d like to say thank you for everybody’s continued support over the last few months.<span style="mso-spacerun: yes;"> </span>We’re doing pretty well so far, and while we miss Sophie all the time and know we have a long road ahead of us… we continue to talk about her <span style="mso-spacerun: yes;"> </span>and look at her smiley pictures and videos everyday, and appreciate when others aren’t afraid to mention her name up, ask how we’re doing, etc… she’ll always be a big part of our lives forever.</span></div>
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<span style="mso-no-proof: yes;">Second, we recently returned back to Chicago after taking some time away, including a stop in Cambodia where we volunteered at an orphanage for children with disabilities and/or HIV.<span style="mso-spacerun: yes;"> </span>We highly recommend the experience of volunteering abroad for people of all ages, experiences, etc… here’s some pictures from our time there:<span style="mso-spacerun: yes;"> </span><a href="https://picasaweb.google.com/112303223653716632680/Cambodia2012?authuser=0&authkey=Gv1sRgCJzJ0ea65rKrRg&feat=directlink"><span style="color: blue;">Cambodia pics</span></a><span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">(</i></span><i style="mso-bidi-font-style: normal;">best viewed via “slideshow” option in the upper left corner<span style="color: #1f497d;">, </span>pictures move pretty quickly unless you pause the automatic transfer)</i><span style="mso-no-proof: yes;"></span></div>
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<span style="mso-no-proof: yes;"><span style="color: black;">Lastly, we are excited to announce the date of Sophie’s memorial celebration and our first annual Walk & Roll event to raise awareness and funding for SMA:<span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;"><u>Saturday, June 16<sup>th</sup></u></b>.<span style="mso-spacerun: yes;"> </span>We look forward to celebrating Sophie’s life with everyone and <span style="color: black;">helping</span> support a great charity for this terrible disease.<span style="mso-spacerun: yes;"> </span>See below for the official “Save The Date” for more details, official event website and registration page will be available soon.</span></span></div>
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Thanks again for all of the support,</div>
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- Liz & Mike</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv8JqY1Yk66_HdZSCsrm2gZMVqlRdjml93Hw8NqMWEHr4TiPERcqnPJdZwn5Al7Ci0JW4e98jKX49qd3OFDWKxUrt6pNQPdWmG_9uTXV-dvgRcPhfjNFtkh7VsCPDdQUWqWgpNdVsl5MsT/s1600/Sophie+-+Walk+Logo+-+Final.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img aea="true" border="0" height="85" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv8JqY1Yk66_HdZSCsrm2gZMVqlRdjml93Hw8NqMWEHr4TiPERcqnPJdZwn5Al7Ci0JW4e98jKX49qd3OFDWKxUrt6pNQPdWmG_9uTXV-dvgRcPhfjNFtkh7VsCPDdQUWqWgpNdVsl5MsT/s400/Sophie+-+Walk+Logo+-+Final.jpg" width="400" /></a></div>
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<span style="mso-no-proof: yes;"><span style="font-family: Calibri;"><span style="color: black;"><b style="mso-bidi-font-weight: normal;"><u><span style="mso-no-proof: yes;">Event Description</span></u><span style="mso-no-proof: yes;">:</span></b><span style="mso-no-proof: yes;"><span style="mso-spacerun: yes;"> </span>Celebration of Sophie’s life and our first annual walk & roll event to raise awareness and funding for SMA </span></span></span></span> </div>
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<span style="font-family: Calibri;"><span style="color: black;"><b style="mso-bidi-font-weight: normal;"><u><span style="mso-no-proof: yes;">Location</span></u><span style="mso-no-proof: yes;">:</span></b><span style="mso-no-proof: yes;"><span style="mso-spacerun: yes;"> </span>Lincoln Park – Chicago (event will be located just south of the Lincoln Park Zoo)</span></span></span></div>
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<span style="font-family: Calibri;"><span style="color: black;"><b style="mso-bidi-font-weight: normal;"><u><span style="mso-no-proof: yes;">Date</span></u><span style="mso-no-proof: yes;">:</span></b><span style="mso-no-proof: yes;"><span style="mso-spacerun: yes;"> </span>Saturday, June 16, 2012<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">(note that this is the Saturday of Father’s Day weekend)</i></span></span></span></div>
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<span style="font-family: Calibri;"><span style="color: black;"><b style="mso-bidi-font-weight: normal;"><u><span style="mso-no-proof: yes;">Time</span></u><span style="mso-no-proof: yes;">:</span></b><span style="mso-no-proof: yes;"><span style="mso-spacerun: yes;"> </span>Check-in begins at 11:00am CT</span></span></span></div>
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<span style="font-family: Calibri;"><span style="color: black;"><b style="mso-bidi-font-weight: normal;"><u><span style="mso-no-proof: yes;">Registration</span></u></b><span style="mso-no-proof: yes;">:<span style="mso-spacerun: yes;"> </span>The official website for the event (including participate registration) will be available soon</span></span></span><br />
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<span style="font-family: Calibri;"><span style="color: black;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="mso-no-proof: yes;">Travel Arrangements</span></u></i></b><i style="mso-bidi-font-style: normal;"><span style="mso-no-proof: yes;">:<span style="mso-spacerun: yes;"> </span>Note that due to the busy tourist and conference season in Chicago in the summer, we <u>highly recommend out-of-town guests book their travel reservations soon</u>.<span style="mso-spacerun: yes;"> </span>We have reserved a number hotel rooms for out-of-town guests at discounted rates, let us know if you would like to reserve one of them.</span></i></span></span></div>
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<span style="font-family: Calibri;"><span style="color: black;"><b style="mso-bidi-font-weight: normal;"><u><span style="mso-no-proof: yes;">Sophie’s Story:</span></u></b></span></span></div>
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<span style="font-family: Calibri;"><span style="color: black;">Our beautiful daughter Sophia Kathleen TerHorst (“Sophie”) was born on March 12, 2011. Despite being a little peanut at birth (4lbs 5oz) and a few other challenges early on, she did great when we brought her home from the hospital and we were filled with the hopes and dreams that all first time parents experience.</span></span></div>
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<span style="font-family: Calibri;"><span style="color: black;">Our entire world flipped upside down a few weeks later.<span style="mso-spacerun: yes;"> </span>We had noticed that Sophie had below normal movement of her arms, legs, head and neck, and took her to see a pediatric neurologist who hinted that Sophie might have Spinal Muscular Atrophy (“SMA”).<span style="mso-spacerun: yes;"> </span>This feedback came as a huge shock to us, and we immediately “googled” the disorder (like any parent or patient would do) on our phones before we left the parking lot.<span style="mso-spacerun: yes;"> </span>Sophie fit the devastating description almost perfectly.<span style="mso-spacerun: yes;"> </span>Lab work was done and confirmed that she indeed had SMA.</span></span></div>
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<span style="font-family: Calibri;"><span style="color: black;">We quickly realized the magnitude of Sophie’s diagnosis and decided that palliative care (through Children’s Memorial Hospital and Horizon Hospice) was the best treatment option for her. We strived to give Sophie the highest quality of life as possible… we lived each day to the fullest, showered Sophie with attention and as many experiences as we could, and focused on keeping her comfortable at every stop along the way with the help of the palliative care team. <span style="mso-spacerun: yes;"> </span>She in turn filled our days with smiles and more joy than we could have ever imagined. <span style="mso-spacerun: yes;"> </span>Sophie peacefully passed away on her 9 month birthday, and though we miss her more than words can describe, we are better people and she will never be forgotten.</span></span></div>
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<b style="mso-bidi-font-weight: normal;"><u><span style="font-family: Calibri;"><span style="color: black;">What is SMA:</span></span></u></b></div>
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<span style="font-family: Calibri;"><span style="color: black;">Spinal Muscular Atrophy is the number one genetic killer of children under the age of two.<span style="mso-spacerun: yes;"> </span>SMA is an inherited and fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.<span style="mso-spacerun: yes;"> </span>~1 in 6,000 newborns have SMA, which equates to two newborn children born with it each day in the US on average.<span style="mso-spacerun: yes;"> </span>One in every 40 people carries the gene that causes SMA, which means there are more than seven million carriers in the US alone.<span style="mso-spacerun: yes;"> </span>Currently there is no treatment or cure, however awareness and DNA testing (which can be done with a simple blood test) are very important to preventing this terrible disease.</span></span></div>
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<b style="mso-bidi-font-weight: normal;"><u><span style="font-family: Calibri;"><span style="color: black;">Sophie’s Walk & Roll Event:</span></span></u></b></div>
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<span style="font-family: Calibri;"><span style="color: black;">The purpose of Sophie’s walk & roll event is two-fold. One, we want to honor Sophie who was the most amazing soul that we have met. We look forward to catching up with family, friends and anyone interested in participating to help celebrate Sophie’s life.<span style="mso-spacerun: yes;"> </span>Second, we want to raise awareness and money for SMA. An organization called Families of SMA (“FSMA”) is helping to organize the walk and was a great resource for us during Sophie’s life. <span style="mso-spacerun: yes;"> </span>We want to give back by donating proceeds from the walk to their organization to help support families impacted by the disease and to help with research in hopes that one day no other family will experience the sad reality of SMA.</span></span></div>
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<b style="mso-bidi-font-weight: normal;"><u><span style="font-family: Calibri;"><span style="color: black;">Questions or Ideas:</span></span></u></b></div>
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<span style="font-family: Calibri;"><span style="color: black;">If you have any questions on the event or SMA, just ask.<span style="mso-spacerun: yes;"> </span>Also, if you have ideas on how to help share Sophie’s story and/or increase awareness and testing of SMA, we’d love to hear from you.</span></span></div>
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<span style="font-family: Calibri;"><span style="color: black;">Thank you for all of your support,</span></span></div>
<span style="font-family: Calibri;"><span style="color: black;">- Liz & Mike TerHorst</span></span></div>
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<a href="mailto:lizterhorst@gmail.com"><span style="color: blue; font-family: Calibri;">lizterhorst@gmail.com</span></a></div>
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<a href="mailto:michael.terhorst@gmail.com"><span style="color: blue; font-family: Calibri;">michael.terhorst@gmail.com</span></a><span style="color: blue; font-family: Calibri;"> </span></div>
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<br /></div>Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com1tag:blogger.com,1999:blog-7394794579408965692.post-81256814728911066412012-01-09T20:34:00.000-08:002012-01-09T20:34:53.965-08:00Remembering SophieWe can hardly believe that it's been 4 weeks since Sophie passed. She taught us more in her 9 months of life than we could have ever imagined, and touched so many lives through her courageous attitude and loving spirit every single day of her life.<br />
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We've been on a rollercoaster of emotions... we'd love to say that everything is 'fine', but that is not entirely true. We miss Sophie more than words can express, and know that we have a long road ahead of us. Despite this, we are past asking 'why her' and 'why us' because those questions can't be answered and do not help us more forward. What we do know is that Sophie was an amazing soul who will continue to live on through us and all of those she touched.<br />
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Thank you to everyone for your support! It has helped to make this extremely difficult situation a bit easier. Thank you to those who lit a candle in memory of Sophie. If you haven't already, please consider lighting a candle in memory of her and take a picture of the candle with you and/or a special note to her/us and send to <u>lizterhorst@gmail.com</u>. We will be compiling these and assembling them into a memorial album. <br />
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In the future, one of our primary goals will be to make Sophie proud of us. With this in mind, and to help us try to move forward, we have decided to take some time off of work and volunteer abroad. We recently finalized plans to travel to Cambodia and volunteer in an orphanage for children with disabilities (through a great organization called Ubelong) and will arrive there next week.<br />
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Stay tuned for more details on Sophie's memorial work here in Chicago that will take place in late spring / early summer.<br />
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<br />Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com1tag:blogger.com,1999:blog-7394794579408965692.post-60026777109022202912011-12-13T20:45:00.000-08:002011-12-14T08:20:20.635-08:00Sophie's PassingIt is with heavy hearts that we inform everyone that Sophie passed away Monday morning, December 12th, 2011 (exactly her 9 month birthday). We take great comfort in knowing that she passed away very peacefully, in her sleep, and in her mama's arms.<br />
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The timing of her passing was quite unexpected for everyone (us, her healthcare team, etc.). The past two weeks, Sophie had been smiling more than ever, able to go on long walks, and gave us so many incredible memories. She woke up Sunday morning very lethargic, and slept through most of the day, however we thought she might be simply entering the initial stages of SMA related respiratory decline (which can take months). Monday morning was much of the same, so we called her palliative care nurse Jennifer to stop by and check her out, not expecting anything significant to come out of her evaluation. Within 10 minutes of the Jennifer's arrival, Sophie peacefully stopped breathing and passed away while being held in Liz's arms and surrounded in love as she was her entire time with us.<br />
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Sophie taught us so much... she was the most beautiful, sweet, amazing little soul that we have ever met... and we will be better people because of her.<br />
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We have decided to donate Sophie's tissue to help other needy children, and will have a private ceremony just for the two of us (instead of a public funeral). We are also planning to have a memorial walk in the spring to celebrate her life, raise awareness about SMA, and raise funds for SMA research and family support.<br />
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In lieu of attending a funeral, we would love if everyone can show their support by taking a picture of a lit candle in memory of Sophie (along with yourself and/or a special note in the picture) and sending the picture to lizterhorst@gmail.com. We will be collecting the photos and putting it into a memorial album that we will cherish forever. We know that Sophie touched more lives than we could have ever known, and we are honored to have been her parents. <br />
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Below are some photos from the last week that we were able to spend with Sophia:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSsc_7lPAuzf69irT-BAQnjRYyjkLdVPk4Q7sPw48uPaw-Xk1A2wRfPwO4nWtJ5PgvI04RpOMKcf7d0F5LzuCE5KPRa2JTWhh7fuQWQAMeLaAMIpB5x3dpx2cLwb75Gn8xAJ4ns-Wf_lqS/s1600/IMG_4783.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSsc_7lPAuzf69irT-BAQnjRYyjkLdVPk4Q7sPw48uPaw-Xk1A2wRfPwO4nWtJ5PgvI04RpOMKcf7d0F5LzuCE5KPRa2JTWhh7fuQWQAMeLaAMIpB5x3dpx2cLwb75Gn8xAJ4ns-Wf_lqS/s320/IMG_4783.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our last family photo... the night before she passed. As you can see, she was so content hanging out with Mama and Dada... we will forever cherish how happy and peaceful she was her final night with us</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOXsnuyopwJeOEde1Y9SMS8WBLqN9ELosfrGys6nxRwVekuhGqyp4ETNnsCgEO7kMWuJnabd3pcN_7-o4kQPcD2YRxPrAYfz9_gubVUTEzx503MNOtxAB6MvtFZ_hDyUwndO9pwbu8CnSh/s1600/IMG_4770.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOXsnuyopwJeOEde1Y9SMS8WBLqN9ELosfrGys6nxRwVekuhGqyp4ETNnsCgEO7kMWuJnabd3pcN_7-o4kQPcD2YRxPrAYfz9_gubVUTEzx503MNOtxAB6MvtFZ_hDyUwndO9pwbu8CnSh/s320/IMG_4770.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Watching Elmo videos with Dada</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMf3St8xqcxO2ek8ZuSPW65KShuwIiR9_nGRoHoFL12Gg4fCsIdRQzm0uvM2fS2EgRPAx8ZBsrJoaU4boIfu0c_3BnMgBADiJOeQCH2OBQfuMWvZCcmz1vhw5gxAnaq4WdQB_IGiO-sOuo/s1600/IMG_4753.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMf3St8xqcxO2ek8ZuSPW65KShuwIiR9_nGRoHoFL12Gg4fCsIdRQzm0uvM2fS2EgRPAx8ZBsrJoaU4boIfu0c_3BnMgBADiJOeQCH2OBQfuMWvZCcmz1vhw5gxAnaq4WdQB_IGiO-sOuo/s320/IMG_4753.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanging out with Mama</td></tr>
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<br />Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com8tag:blogger.com,1999:blog-7394794579408965692.post-79111950843879606032011-11-27T08:14:00.001-08:002011-11-27T11:42:01.941-08:00Sophie Update/ThanksgivingFor the past several weeks, Sophie has been more irritable than before and not her 'normal self.' We have been working closely with her palliative care nurse and health care team at Children's Memorial Hospital to figure out what might be causing this and to help keep her comfortable. We have adjusted some medications and made other small changes and she seems to be doing a little better the past few days. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAB-d_mrvgF53Dwx9kMZ7lNPMU_Uucm7XldaqQcDWdv9m_z4F1oulhz0QnVCUsOutaXV7gAE2gGX9RYphDVasvBbUgPm9p_OsO5AKdRSj73d6bpoUqmna-P1wp91E-OaByd6di9FtDUaaN/s1600/IMG_4620.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAB-d_mrvgF53Dwx9kMZ7lNPMU_Uucm7XldaqQcDWdv9m_z4F1oulhz0QnVCUsOutaXV7gAE2gGX9RYphDVasvBbUgPm9p_OsO5AKdRSj73d6bpoUqmna-P1wp91E-OaByd6di9FtDUaaN/s320/IMG_4620.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nurse Jennifer<br />
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Sophie has also started music therapy which she loves! Her music therapist, Rachel, is wonderful and Sophie loves watching her play guitar. <br />
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Sophie also had some visitors for Thanksgiving:</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjb3vUDIwQefgc_9S-uAGpK8PEsMwGKyCyGOnZYx7UcLekjd-aJN1q6Jtx17VJpbB9q07rJ1EEOTzX1OT49q5nw_5Q_KaNmRBs1EHl5HlSmfQYu_YGOml0hy5-V2PjPslC4MYck5thyphenhyphen-OE/s1600/IMG_4638.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjb3vUDIwQefgc_9S-uAGpK8PEsMwGKyCyGOnZYx7UcLekjd-aJN1q6Jtx17VJpbB9q07rJ1EEOTzX1OT49q5nw_5Q_KaNmRBs1EHl5HlSmfQYu_YGOml0hy5-V2PjPslC4MYck5thyphenhyphen-OE/s320/IMG_4638.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Uncle Brad brought his guitar!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL0rOchY7tcl7s-WSAUOYXqRLof-V9XClCLiErWi-jwjYaOpwlAoWVttzGGhEg-to2YmkMPRvEkqwv_vyvxQTj330aA8T6C0lAZlIUDzuiuMaZciTxpiH6cZVq7QLi0UlIJloQC19GOKrM/s1600/IMG_4665.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL0rOchY7tcl7s-WSAUOYXqRLof-V9XClCLiErWi-jwjYaOpwlAoWVttzGGhEg-to2YmkMPRvEkqwv_vyvxQTj330aA8T6C0lAZlIUDzuiuMaZciTxpiH6cZVq7QLi0UlIJloQC19GOKrM/s320/IMG_4665.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nonnie, Carla, cousin Zoe, Aunt Jenny</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Pretty ladies</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_YHlm0-xPT62naErlXPINXOQs5E3leG-2jYGsRoqWCF9eqca3A_PMo3f2-kfuTtBSuMUEFRIpZCW6IOyB6Y0fs_NeTQLXoCow5-zxkZTUSO2WLW4QlOlPRI_km82xcNqIVXvz1JgR0R_5/s1600/IMG_4658.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_YHlm0-xPT62naErlXPINXOQs5E3leG-2jYGsRoqWCF9eqca3A_PMo3f2-kfuTtBSuMUEFRIpZCW6IOyB6Y0fs_NeTQLXoCow5-zxkZTUSO2WLW4QlOlPRI_km82xcNqIVXvz1JgR0R_5/s320/IMG_4658.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sophie loves Zoe's hair</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPtdvkfdMKqBQQKHs-3QaGlh6JXC0tTOv6XA6oePVLy6OSWw9DsokG5zbl01kkdxuTQiDEM60iA4SAYx3LgqCAg9NyBML5N6apXK4O3Sg6LhniPX9PlJLTUeCsdv2B7yLC1vf_1-qJ9FJC/s1600/IMG_4631.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPtdvkfdMKqBQQKHs-3QaGlh6JXC0tTOv6XA6oePVLy6OSWw9DsokG5zbl01kkdxuTQiDEM60iA4SAYx3LgqCAg9NyBML5N6apXK4O3Sg6LhniPX9PlJLTUeCsdv2B7yLC1vf_1-qJ9FJC/s320/IMG_4631.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sophie can't get enough of Brad playing his guitar</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKppIIq_afKIqauh0Gv8sobhaGro_SE_Ne1-RUYwE7XDIctsfo7oZEj1QRN46GD8reT_F4XwyiCbFqqe9zLBEeSBDQx_GBxm96KdqNvVszchQ6l4sHz_npv9RV7Xd6jB6BN4KttuTAlgny/s1600/IMG_4310.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKppIIq_afKIqauh0Gv8sobhaGro_SE_Ne1-RUYwE7XDIctsfo7oZEj1QRN46GD8reT_F4XwyiCbFqqe9zLBEeSBDQx_GBxm96KdqNvVszchQ6l4sHz_npv9RV7Xd6jB6BN4KttuTAlgny/s320/IMG_4310.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandpa during his last visit</td></tr>
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</div>Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com1tag:blogger.com,1999:blog-7394794579408965692.post-23144018963300410832011-11-18T16:43:00.001-08:002011-11-19T08:35:18.265-08:008 Months Old!<div class="separator" style="clear: both; text-align: center;">
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On November 12th, Sophie turned 8 months old! It's been difficult some days to get out, so we celebrated her birthday in parts with singing & cake, Shedd Aquarium, and a local botanical garden on different days... here are the pics!<br />
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<tr><td class="tr-caption" style="text-align: center;">Time flies by... can't believe she is already 8 months old!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A ladybug cake for our little ladybug</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">She approved</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Someone is very interested in the fish!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Jellyfish exhibit</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">View of the city outside the aquarium...someone decided to take a nap before the picture</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sophie loved the plants at the botanical garden</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Fun with Daddy</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A little rosebud</td></tr>
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We will post an update on Sophie' progression soon.Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com0tag:blogger.com,1999:blog-7394794579408965692.post-66110357151059124142011-11-09T18:08:00.000-08:002011-11-14T08:54:17.375-08:00Entourage part 4<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Nap Time</td></tr>
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Sophie has met so many great people in her 7 (almost 8) months of life. Here is more of Sophie's crew:<br />
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<tr><td class="tr-caption" style="text-align: center;">Christine</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Little Audrey and Julia</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Kurtz Family</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sarah, Henry, and Ryan</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXxmJ5EwZIhRvXEjrgHlxTLSM1f0UZNhEew61xNMLKVup4QMuWE7CF6trpksqc3zH7oWA-ghG5wkQWbA19aCGydZnnjXG1TdhdW6PQp9eEtCUz7SRxaBHwoXcOO1sdFBC6njTvIyewMp9l/s1600/IMG_4119.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXxmJ5EwZIhRvXEjrgHlxTLSM1f0UZNhEew61xNMLKVup4QMuWE7CF6trpksqc3zH7oWA-ghG5wkQWbA19aCGydZnnjXG1TdhdW6PQp9eEtCUz7SRxaBHwoXcOO1sdFBC6njTvIyewMp9l/s320/IMG_4119.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brian and Elizabeth</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Nancy and Elliot</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Diane Blain</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Kris Baumgartner</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Tina, Ally, Brianna, Maddizon</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimxZnSi7XvyLhZXSgQ930rLlYwlnMgNFLK1OO0pccj1Omj1wL_NqrFfc-MftPJMiWnPuQItffi6DyVW_Nc906nHM4mUaklhEuASSajqC6nmsOkJjdWR5ZV1QSsIwCtjYqM2sxTpzXo8RlX/s1600/IMG_3398.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimxZnSi7XvyLhZXSgQ930rLlYwlnMgNFLK1OO0pccj1Omj1wL_NqrFfc-MftPJMiWnPuQItffi6DyVW_Nc906nHM4mUaklhEuASSajqC6nmsOkJjdWR5ZV1QSsIwCtjYqM2sxTpzXo8RlX/s320/IMG_3398.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jeni and Jacob</td></tr>
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<br />Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com2tag:blogger.com,1999:blog-7394794579408965692.post-49617953140253839332011-10-31T19:40:00.000-07:002011-11-01T19:25:29.534-07:00Happy Halloween<div class="separator" style="clear: both; text-align: center;">
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For Halloween this year, we decided to order two costumes for Sophie. The day before Halloween, we dressed her up as a ladybug, and for Halloween night we dressed her up as a duck. The following are some pictures:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsbPHHsVBLPerpxpQcxP0mLGXJoFZqyUTf_dvyM4NymNZWpyKzk8jz9-zRfqfv2lbQ-mGzM5_Rxpkb4-PYrXSHBbu1XI71W0nlqCXEUwDcO5pB8ktxe483-2fUF6MI65AJragXyXJKnHuN/s1600/IMG_4378.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsbPHHsVBLPerpxpQcxP0mLGXJoFZqyUTf_dvyM4NymNZWpyKzk8jz9-zRfqfv2lbQ-mGzM5_Rxpkb4-PYrXSHBbu1XI71W0nlqCXEUwDcO5pB8ktxe483-2fUF6MI65AJragXyXJKnHuN/s320/IMG_4378.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy and his ladybug</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr3aAA2e-OtR2NsiNUxDhuMl03DNdWyog7Lwj9Txhfcbpa2_Gdt4_bORwyFhn9cFLh7LVwLEU_5DiX8fPd3PggMf7HxTCfylfC8soGfPftID8V0WKddR3CMIkYSHCyoMdUgmz3ZnOppMee/s1600/IMG_4371.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr3aAA2e-OtR2NsiNUxDhuMl03DNdWyog7Lwj9Txhfcbpa2_Gdt4_bORwyFhn9cFLh7LVwLEU_5DiX8fPd3PggMf7HxTCfylfC8soGfPftID8V0WKddR3CMIkYSHCyoMdUgmz3ZnOppMee/s320/IMG_4371.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nonnie :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQLSuUdznuYdE9YqbrYNIYmFV4aLeZ9EGysIrOofGNE2pB2PIMxWyMpO_oHphKKtn15yDsq26hJFjG62lFzZdkGgGgCEoDoCKTCuKP-ixztruBiPOAIdtBgiTBSBqmWRkNyZ-hW2BOfmYN/s1600/IMG_4363.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQLSuUdznuYdE9YqbrYNIYmFV4aLeZ9EGysIrOofGNE2pB2PIMxWyMpO_oHphKKtn15yDsq26hJFjG62lFzZdkGgGgCEoDoCKTCuKP-ixztruBiPOAIdtBgiTBSBqmWRkNyZ-hW2BOfmYN/s320/IMG_4363.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In front of the tree which was recently planted in honor of Sophie</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiadm94oKh27gCDUY0JrZB3N6VLcrMdp4_RtocF4KmrkJvGq21WqkqxC4kQ_k9KtAm90goDyrA7HcFR7zIR0xg5nhD4VvvXZLN5zkznxJCap38H0gZPOIb8_xjHz76qi3xeMk-AImYFlIu/s1600/IMG_4395.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiadm94oKh27gCDUY0JrZB3N6VLcrMdp4_RtocF4KmrkJvGq21WqkqxC4kQ_k9KtAm90goDyrA7HcFR7zIR0xg5nhD4VvvXZLN5zkznxJCap38H0gZPOIb8_xjHz76qi3xeMk-AImYFlIu/s320/IMG_4395.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She found a pumpkin just her size</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgosR_knwTSyhGFHYvne40DhqfwfddD6ywoihPKlkxu0k56S1H4UYvjJvNEi7-iQknzyl4oahtCmhpdjDgpyxStnYUAjPjKs8dsNc0opfwuTWrsDKcqUmjbUw3jRp_1bZTdpAQOK1HJRMCx/s1600/IMG_4400.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgosR_knwTSyhGFHYvne40DhqfwfddD6ywoihPKlkxu0k56S1H4UYvjJvNEi7-iQknzyl4oahtCmhpdjDgpyxStnYUAjPjKs8dsNc0opfwuTWrsDKcqUmjbUw3jRp_1bZTdpAQOK1HJRMCx/s320/IMG_4400.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Feeling the pumpkin she helped carve</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiasR9-hzieQ_FoZV2mLD_KvT1WOCz0-mlYZIfeZg1OEVHjzZxT748HKOpHltsb_lqE-L49LevL8tLyH6uUADNJBI-JwSwR6DVdiKjtyj3E4ex2DOB5-uq1HAVkc3Q10qjEScko6GwWbSl3/s1600/IMG_4408.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiasR9-hzieQ_FoZV2mLD_KvT1WOCz0-mlYZIfeZg1OEVHjzZxT748HKOpHltsb_lqE-L49LevL8tLyH6uUADNJBI-JwSwR6DVdiKjtyj3E4ex2DOB5-uq1HAVkc3Q10qjEScko6GwWbSl3/s320/IMG_4408.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ready to get some candy!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpcK65lT6l1vQPiL51jGi_db3PKWMFFNO1I_grJHcJyMYBjj3LpeIj6fLYNlanlYHZ6yLFwDfEMD1RrFA894-HGuaTiCA3LcQjaFhz2qX2-3EifxlN0qSoRY1Xlx7rJdKX4o1JwpM_6UER/s1600/IMG_4425.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpcK65lT6l1vQPiL51jGi_db3PKWMFFNO1I_grJHcJyMYBjj3LpeIj6fLYNlanlYHZ6yLFwDfEMD1RrFA894-HGuaTiCA3LcQjaFhz2qX2-3EifxlN0qSoRY1Xlx7rJdKX4o1JwpM_6UER/s320/IMG_4425.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ready to go trick or treating</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijTLJNHNySVdB9KQpV_nFZ7Psx3tbKp937AFjLhtdrGtV6dFoF_aBiOx3gY3hV-eZY6Da2V95J7JvY560xxGKObv6_s-55dj5HCXGDxINvWeMRUMaNn5GqgJVu6BO-1M8RcCx1TNmU4MDh/s1600/IMG_4328.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijTLJNHNySVdB9KQpV_nFZ7Psx3tbKp937AFjLhtdrGtV6dFoF_aBiOx3gY3hV-eZY6Da2V95J7JvY560xxGKObv6_s-55dj5HCXGDxINvWeMRUMaNn5GqgJVu6BO-1M8RcCx1TNmU4MDh/s320/IMG_4328.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Never to be ignored...Bella would prefer to be the center of attention, though she knows who is in charge</td></tr>
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<br />Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com0tag:blogger.com,1999:blog-7394794579408965692.post-27982693492538454082011-10-20T18:37:00.000-07:002011-10-20T18:37:26.955-07:007 Months Old!On October 12th, Sophie turned 7 months old! It's amazing how much she changes month to month...though her strength is slowly decreasing, her mind is advancing rapidly! Sophie knows that she is 'in charge' and lets us know in her own way if she wants something. At the same time, she does this in the sweetest way possible:)<br />
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For Sophie's 7 month birthday, we celebrated by going to a pumpkin patch. Though it isn't Halloween yet, we decided to dress her up anyways. <br />
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<tr><td class="tr-caption" style="text-align: center;">She's ready to go!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Biggest pumpkin ever?</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sophie picked a good pumpkin to bring home</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Checking out the animals</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sophie may have been a little scared of this guy</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">And she's out after a short trip to the pumpkin patch!</td></tr>
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<br />Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com1tag:blogger.com,1999:blog-7394794579408965692.post-62349556561702620392011-10-11T19:41:00.000-07:002011-10-11T19:41:46.511-07:00NG TubeSophie is nearing her seven month birthday, and she has begun to lose more strength over the last few weeks (which is often seen with babies with SMA in the 6-7 month timeframe). Not only is Sophie's strength declining, but also her ability to efficiently eat (suck/swallow).<br />
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On Friday, October 7th, we decided to have a nasal gastric ("NG") tube put in for Sophie. An NG tube is basically a small plastic tube which leads from the nose to the stomach, which allows us to give Sophie food directly into her stomach. The few weeks prior to the NG tube placement, eating had become more and more difficult for Sophie and she was getting less and less food. This led her to often being uncomfortable and irritable. After the tube was placed, we were able to administer food through the tube without her using all of her energy to eat. After the first feed with the NG tube that afternoon, she was immediately much more comfortable and back to her normal happy, smiley ways!<br />
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<tr><td class="tr-caption" style="text-align: center;">Sophie sporting her new NG tube</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Her NG tube doesn't seem to bother her as evident by her smiles</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Playing on the iPad...though Sophie has only a little movement in her arms, she is able to use it on the touchscreen of the iPad...here she is playing a piano iPad app</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Kind of tough to see, but this is Sophie asleep while being fed through her NG tube...Liz is holding her food in a tube, which goes through the tube into Sophie's stomach...Sophie still gets her cuddle time while getting her feeding!</td></tr>
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With the beautiful weather this week, we decided to take Sophie to the beach</div>
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<tr><td class="tr-caption" style="text-align: center;">Sophie, Bella, and Daddy</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sophie and Mommy</td></tr>
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<span style="letter-spacing: 0.0px;">Once again, we'd like to thank everyone for their kind thoughts and support. Our friends, families, employers, colleagues, and Sophie's healthcare providers have all been so supportive and understanding. We'd also like to mention a special thank you to everyone in the SMA community... you have been an incredibly helpful and supportive group in every step in our journey (as only you would understand), and we hope we can give back to others in the future like you have all helped us so far (and we're sure that help will continue in ways we can't yet imagine in the future).</span></div>
Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com2tag:blogger.com,1999:blog-7394794579408965692.post-30281690018032566272011-09-23T18:11:00.000-07:002011-09-25T04:18:24.863-07:00Sophie's 6 Months Old!<div class="separator" style="clear: both; text-align: center;">
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On September 12th, Sophie turned 6 months old! Since the lives of SMA babies are typically measured in months and not years, we are going to do something special on the 12th of each month going forward. More on her 6 month party is below, however first is an updated on how she's doing:<br />
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As past posts have mentioned, Sophie will continue to get weaker as time goes on. This includes the muscles that control swallowing and breathing. Due to this, we have started to notice Sophie having more trouble in prolonged upright positions (she is unable to swallow saliva as well as she used to, and being upright makes it more difficult to breathe at times). We have switched to a carseat that allows her to lay down flat and purchased a new stroller which reclines all the way down. This allows us to continue getting out and about as much as before. With all of this said, we are still able to hold Sophie upright, but if we notice that she is sounding 'congested' we simply switch her position. If Sophie does becomes too congested, we have to remove the saliva at the back of her throat with a bulb syringe...as her condition worsens, we have a suction machine which will help make this process more efficient. Sophie is such a sport and tolerates this really well.<br />
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Though Sophie is slowly becoming weaker, her mind is advancing just as a typical baby's does. We have been keeping busy -- keeping her busy! She often gets bored with toys after a few minutes, so it feels like we are constantly switching activities to keep her stimulated (she isn't able to entertain herself as easily as a typical baby due to her weakness). Some of her favorite things to do are: reading books, playing with the iPad (there are kids games where we can help her touch the screen and allow her to 'play'), playing with toys that light up/sing, playing with balloons, watching the trees outside our window, staring at the ceiling fan, etc. She likes movement, so we do a lot of walking around with her, swinging, dancing, etc. Sophie also still loves bath time, which provides an environment where she can more easily move her arms/legs because of the buoyancy of the water. <br />
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Sophie has the sweetest little personality we've ever seen. Though she likes keeping busy, she rarely complains or cries. She is easy to put to sleep (most nights) and is smiling more and more. <br />
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Now to the fun stuff! For Sophie's 6 month birthday, we took her to the Brookfield Zoo (which is bigger than the Lincoln Park Zoo near our place). After the zoo, we had a small birthday party with an Elmo cake, balloons, and some of her favorite people. <br />
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The following are some pictures of our day:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQuGp6vruH6Aq6U_czwDuFXlERUOBariEqV6eV2u4cR9BOkmVlAeZTzifiXP_iFYEnACBsyOR6pYDYxhr6ikYWLLX4wefmynqZr2Ogtv4JvmKdcvqnf3EWHE5XkhPckqiZkGlLO7d02vPa/s1600/IMG_3948.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQuGp6vruH6Aq6U_czwDuFXlERUOBariEqV6eV2u4cR9BOkmVlAeZTzifiXP_iFYEnACBsyOR6pYDYxhr6ikYWLLX4wefmynqZr2Ogtv4JvmKdcvqnf3EWHE5XkhPckqiZkGlLO7d02vPa/s320/IMG_3948.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loading up...She's excited!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgezsLqG-xImCHZwLd1CTX7JkwPP8_qRZndkAYB44QDUzQHpukDn-LJ3Q-XHsRyq99ApDpO_mVz3W87p8hbfIZhKBaWBdCmq9JHcgu7wmxBaM6Kv05iuJPCKzbIANuJIYLqBlPGlzhK6J3B/s1600/IMG_3954.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgezsLqG-xImCHZwLd1CTX7JkwPP8_qRZndkAYB44QDUzQHpukDn-LJ3Q-XHsRyq99ApDpO_mVz3W87p8hbfIZhKBaWBdCmq9JHcgu7wmxBaM6Kv05iuJPCKzbIANuJIYLqBlPGlzhK6J3B/s320/IMG_3954.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here we go</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnTX55vHhGyZ18Lv2ncGFwXy6tPesOBKr2wiXgO6SBWIN1_pj1_3v5Yvdi5pLiZRC40KDy0Mt2I2W3rUbS6Bb9TOOx95xrboL0NQmFbQG6pZ_nXJfB-LsunF5n5PeH-_bnxdXD3SfC8kwP/s1600/IMG_3957.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnTX55vHhGyZ18Lv2ncGFwXy6tPesOBKr2wiXgO6SBWIN1_pj1_3v5Yvdi5pLiZRC40KDy0Mt2I2W3rUbS6Bb9TOOx95xrboL0NQmFbQG6pZ_nXJfB-LsunF5n5PeH-_bnxdXD3SfC8kwP/s320/IMG_3957.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sophie's first carousel ride<br />
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Very interested in the sea lions<br />
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And...she's out</div>
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We continued on even though the star of the show fell asleep</div>
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This picture was taken for Aunt Kim and Aunt Juli</div>
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One last stop with Daddy</div>
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As you can see, Sophie fell asleep half way through the zoo trip...but at least she got a good nap! She usually stays up all day because she doesn't want to miss anything.<br />
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And now for the party:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi42uUUAGoKSb9w2SfAbnsdfAjWTroiWfY3LXMST8Y7TwVBpViXKbO2bbytg32ti7bR7CNUJT16LpZX9JMAQkUFEDxFY18NDrms_v3XAi7BASpvR6YoTj1pYWeLpEdSiaDBHDZJy1VdkU8B/s1600/IMG_4000.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi42uUUAGoKSb9w2SfAbnsdfAjWTroiWfY3LXMST8Y7TwVBpViXKbO2bbytg32ti7bR7CNUJT16LpZX9JMAQkUFEDxFY18NDrms_v3XAi7BASpvR6YoTj1pYWeLpEdSiaDBHDZJy1VdkU8B/s320/IMG_4000.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sophie's Birthday Spread<br />
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Playtime before cake time<br />
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Cake Time</div>
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Sophie eating some frosting which she loved!</div>
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Sophie hanging with the ladies</div>
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Lastly, we'd like to pass along a big thank you for everyone's continued thoughts and support... we really appreciate it!<br />
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Love,<br />
- Liz, Mike & SophieLiz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com1tag:blogger.com,1999:blog-7394794579408965692.post-61329466347663663622011-09-14T14:35:00.000-07:002011-09-15T03:24:48.015-07:00Entourage Part 3<b>An update on Sophie will be posted very soon...in the meantime, here are some more of Sophie's favorite people:</b><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvkQMJU0rIwOmehAzj5wZXGPWF5A9MsdYmM7R__na6yAuJKnStzsevyfhQ9adOHbKEa-7hY9EcICdcRC6PCkr9WdaV94d4PfrZhlJnXP_J88uNhKE3hDf6-ji40rp95HkaZQd-INubWoMh/s1600/IMG_3943.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvkQMJU0rIwOmehAzj5wZXGPWF5A9MsdYmM7R__na6yAuJKnStzsevyfhQ9adOHbKEa-7hY9EcICdcRC6PCkr9WdaV94d4PfrZhlJnXP_J88uNhKE3hDf6-ji40rp95HkaZQd-INubWoMh/s320/IMG_3943.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Are you ready for some football? Go Green!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaBeXE6PcUE5oVwd20e5gR4kCA8j92FubzYvoVacqrVwzbK9hHYlSJM9GkuM24GVHrpO8a4xTXw3lyKb4jUEky39uVnrUa7lQFP_tRlP5E-dYfc7KYHIE82D_cxHYK1s6pHGhAALUMpeBF/s1600/craigcara.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaBeXE6PcUE5oVwd20e5gR4kCA8j92FubzYvoVacqrVwzbK9hHYlSJM9GkuM24GVHrpO8a4xTXw3lyKb4jUEky39uVnrUa7lQFP_tRlP5E-dYfc7KYHIE82D_cxHYK1s6pHGhAALUMpeBF/s320/craigcara.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Craig and Cara</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB-oKPzYIVYZWkM7yIPOeJUgBVDHodf3TQ08qQxy5z9wRVZRy3G9QYQQfviJmNRHAG2Qut22tjXEDeuR1EdgixgQb6v5a4V4Yqn80v1-h3Rs-l0UPSouITVlzA3KNzJz50jjHQAhbi-Hej/s1600/photo.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB-oKPzYIVYZWkM7yIPOeJUgBVDHodf3TQ08qQxy5z9wRVZRy3G9QYQQfviJmNRHAG2Qut22tjXEDeuR1EdgixgQb6v5a4V4Yqn80v1-h3Rs-l0UPSouITVlzA3KNzJz50jjHQAhbi-Hej/s320/photo.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Amy, Jack, Steve Otto</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLLf038pQhDRF0-UDdsMc0CRIkm-y16Z7bs2DTsnR-tJ_48Pi2QBRlEbcO3bGBsN75IklFFtY28C-ot-qNzC5-lmE2Jyc_Ot6F-Ln02gtCFJ6ZHNkfBPYkb0__1zcxOjXwhql83ELOzFCa/s1600/IMG_3596.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLLf038pQhDRF0-UDdsMc0CRIkm-y16Z7bs2DTsnR-tJ_48Pi2QBRlEbcO3bGBsN75IklFFtY28C-ot-qNzC5-lmE2Jyc_Ot6F-Ln02gtCFJ6ZHNkfBPYkb0__1zcxOjXwhql83ELOzFCa/s320/IMG_3596.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandma Nancy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguzFtWMaXuJTsr6_d-NluNBebdRG0Ots6QKpsSxUN4OLdD4wNqBvpseG4VRW7M7f7V4HrkKcvXpW-fruT25U1CFj7HUFJQ6rgwz-F4nFF4Yw8fsk892gZE4fLemZOboPeyHxArapF7kC63/s1600/IMG_3869.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguzFtWMaXuJTsr6_d-NluNBebdRG0Ots6QKpsSxUN4OLdD4wNqBvpseG4VRW7M7f7V4HrkKcvXpW-fruT25U1CFj7HUFJQ6rgwz-F4nFF4Yw8fsk892gZE4fLemZOboPeyHxArapF7kC63/s320/IMG_3869.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mike and Jaime</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimpsrJSsFkNU_GZCVIdGPIGeQjAi99IMj6YaFpLmDE2ouBzq7VHvogdBkk9djEp1dTaqBgz0a9PkpDmU2A2DtLArvet5Si6WJhVvh3N6cpa0N5rJqzioFP4qVjwLqK3vs-3r_o8yMQ9CWi/s1600/IMG_3860.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimpsrJSsFkNU_GZCVIdGPIGeQjAi99IMj6YaFpLmDE2ouBzq7VHvogdBkk9djEp1dTaqBgz0a9PkpDmU2A2DtLArvet5Si6WJhVvh3N6cpa0N5rJqzioFP4qVjwLqK3vs-3r_o8yMQ9CWi/s320/IMG_3860.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cousin Cathy, Alex, Evan, Katie</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdO5HJ6hH8rM0PI3PRvmoj7SIYH0PijfilmCxWdLqyxhAOpfTjqwFkMhrGetaAu83Db0E51AvPjvKkKLTQo97DSRvxxHWxg490TiehkqG8BGPYO7XqUppTPUrGVrsRdpIBsDMkV_BSETMs/s1600/IMG_3868.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdO5HJ6hH8rM0PI3PRvmoj7SIYH0PijfilmCxWdLqyxhAOpfTjqwFkMhrGetaAu83Db0E51AvPjvKkKLTQo97DSRvxxHWxg490TiehkqG8BGPYO7XqUppTPUrGVrsRdpIBsDMkV_BSETMs/s320/IMG_3868.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kyle and Karen</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt9e4J5aFNXryOGmtez-xMCXDhHYWeatWTS22FCbtfXWmu9PIvpQJAJptp1-3RwBSFr1G1W0O2kSONZ9dUCWJQDKZYGvy9IO1EFZsnGgYifiQIgPpUvKpPHIIMFjW_uq9uRc85JIdeB6-I/s1600/IMG_3991.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt9e4J5aFNXryOGmtez-xMCXDhHYWeatWTS22FCbtfXWmu9PIvpQJAJptp1-3RwBSFr1G1W0O2kSONZ9dUCWJQDKZYGvy9IO1EFZsnGgYifiQIgPpUvKpPHIIMFjW_uq9uRc85JIdeB6-I/s320/IMG_3991.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Catie and Cousin Locy</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2gp9ZvvpyDGR5nrGSs-XjK_WAmO2HCPHDHpw6LkujYeBAZCsYAjm9bISF4Y-rnQgPerEbWE9r8-fq_C5dnkIgaB6LOrkl4HPJwPvPNumH8bPZmzuazMNoCNFqHZ0GfCiL0jdMnxIKEtMd/s1600/IMG_3845.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2gp9ZvvpyDGR5nrGSs-XjK_WAmO2HCPHDHpw6LkujYeBAZCsYAjm9bISF4Y-rnQgPerEbWE9r8-fq_C5dnkIgaB6LOrkl4HPJwPvPNumH8bPZmzuazMNoCNFqHZ0GfCiL0jdMnxIKEtMd/s320/IMG_3845.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Great Uncle John</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr1jqAgW1_F3i3VrWFqekR0pfR5K_1v_UjZHMI9aRjf99EKk580US_KpDCC3M5Us6zmx0XJ7wXYrJqtfFLESasXHWwmjclEP6kSpTwY0mfWHZujUvBmSShkdphdci7l7LzeSQpV2_qYRBK/s1600/IMG_3832.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr1jqAgW1_F3i3VrWFqekR0pfR5K_1v_UjZHMI9aRjf99EKk580US_KpDCC3M5Us6zmx0XJ7wXYrJqtfFLESasXHWwmjclEP6kSpTwY0mfWHZujUvBmSShkdphdci7l7LzeSQpV2_qYRBK/s320/IMG_3832.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Diane Johnson</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-uGI8an3dV3cXfDFoNL4Bk3D7FzyFBFhWrGhqHk-cvwUR5E0wODHAH6dn7be_84EdLpkuYaX5vBhYpGF34AuIZYPM8nrsOqYr796KsVKva10hCsTsAYNnVzTBmV68QmLXainjlJhBixne/s1600/IMG_3993.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-uGI8an3dV3cXfDFoNL4Bk3D7FzyFBFhWrGhqHk-cvwUR5E0wODHAH6dn7be_84EdLpkuYaX5vBhYpGF34AuIZYPM8nrsOqYr796KsVKva10hCsTsAYNnVzTBmV68QmLXainjlJhBixne/s320/IMG_3993.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Craig and Dawn</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGphGzdDKt6XYRFIH7fjsteE0IXjqZRalHoADh119Yb26YcQHCrW4kik5VC2W5KRahQK05cV4W9DwQPzQCRG-683aj6RwIDCkd2t4m2di0hBfrfUJ4zmm-FwvLGKqDsON_vBh0BBj-N7Ud/s1600/IMG_3840.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGphGzdDKt6XYRFIH7fjsteE0IXjqZRalHoADh119Yb26YcQHCrW4kik5VC2W5KRahQK05cV4W9DwQPzQCRG-683aj6RwIDCkd2t4m2di0hBfrfUJ4zmm-FwvLGKqDsON_vBh0BBj-N7Ud/s320/IMG_3840.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Great Grandma and Grandpa Roeder</td></tr>
</tbody></table>
<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/AVvXsEgOysJXjmNZOjwKbyxBrGOv20AKvZeOgESxt-odPeoADawX4qeFKazgb6iwPRHfIsvx7dm3cGUGpXkqVVeNJuKslQZlGoqZys5LagBXY-NHkYJlInApVf1tJsRHhMJPATcTG3guVuD8Bj_E/s1600/IMG_3822.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOysJXjmNZOjwKbyxBrGOv20AKvZeOgESxt-odPeoADawX4qeFKazgb6iwPRHfIsvx7dm3cGUGpXkqVVeNJuKslQZlGoqZys5LagBXY-NHkYJlInApVf1tJsRHhMJPATcTG3guVuD8Bj_E/s320/IMG_3822.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mark and Heathor</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQRejG0lwLWouPzZY81OjKvi7hRMW7oZhKpLQHf9cZh3Du3BldamxP9F_B1Xzq9vWK5JpIt47W866Sic87YJy-_5l9zgt7czt9sNdAIbnBa2l2Uqhfb3iKq_v5XOoamAHr_VHxIo86iG4f/s1600/IMG_3809.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQRejG0lwLWouPzZY81OjKvi7hRMW7oZhKpLQHf9cZh3Du3BldamxP9F_B1Xzq9vWK5JpIt47W866Sic87YJy-_5l9zgt7czt9sNdAIbnBa2l2Uqhfb3iKq_v5XOoamAHr_VHxIo86iG4f/s320/IMG_3809.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nonnie, Cheryl, Sharon, Kathy</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc8Z7F2UCMnZ_dMVUBuZP1HPcs8_ky86TXcE3oGw1pmbdslfod6ncuHj8mh_9SxfZg-1b5BXtOyfyKsE8qJVB-FrAv0C0ZQyiyavNKVS9biPZYkdA12Cd5EPDW8Y-NeLeUCw9BHw_l4UuO/s1600/IMG_3932.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc8Z7F2UCMnZ_dMVUBuZP1HPcs8_ky86TXcE3oGw1pmbdslfod6ncuHj8mh_9SxfZg-1b5BXtOyfyKsE8qJVB-FrAv0C0ZQyiyavNKVS9biPZYkdA12Cd5EPDW8Y-NeLeUCw9BHw_l4UuO/s320/IMG_3932.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Uncle Craig and Aunt Breanne</td></tr>
</tbody></table>
<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/AVvXsEgI7dCCM8CyyzSGee6heBNca_A-HeBt-QqVDkCJWlwU0j2qPFo-dMb2GdoMme1TqAI7zUg9uYlB2Q-Rl37e8nPab2lOYe0t9zniD0VuagXupJcng26mj7v9gxh1r0OC7A8NOEnrWeXGIwUq/s1600/IMG_3784.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI7dCCM8CyyzSGee6heBNca_A-HeBt-QqVDkCJWlwU0j2qPFo-dMb2GdoMme1TqAI7zUg9uYlB2Q-Rl37e8nPab2lOYe0t9zniD0VuagXupJcng26mj7v9gxh1r0OC7A8NOEnrWeXGIwUq/s320/IMG_3784.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Smiths</td></tr>
</tbody></table>
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Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com1tag:blogger.com,1999:blog-7394794579408965692.post-83959948892106642011-08-21T19:39:00.000-07:002011-08-22T19:08:35.142-07:00August is SMA Awareness Month<div style="font: 12.0px Arial; margin: 0.0px 0.0px 0.0px 0.0px;"><div style="text-align: center;"><span style="letter-spacing: 0px;"> </span></div></div><div style="font: 12.0px Arial; margin: 0.0px 0.0px 0.0px 0.0px;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwwHLhyj0iWAkVjxrqrPza_0jfj09V3UtNfjQCqZZ7m-Uriu188dZjtVjXxyrqrdk1pUwOvwq04Q092JNMl2Ivsb9dkqHPvAqdZLXUG_TeBdQfzQzOv8VNxp4rHbgGFQlG6lRWnBly3pG2/s1600/Sophie+-+Panda+Hat.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwwHLhyj0iWAkVjxrqrPza_0jfj09V3UtNfjQCqZZ7m-Uriu188dZjtVjXxyrqrdk1pUwOvwq04Q092JNMl2Ivsb9dkqHPvAqdZLXUG_TeBdQfzQzOv8VNxp4rHbgGFQlG6lRWnBly3pG2/s320/Sophie+-+Panda+Hat.jpg" width="239" /></a></div><div style="color: black;"><span style="letter-spacing: 0px;"><br />
</span></div><div style="color: black;"><span style="letter-spacing: 0px;">August is SMA awareness month. Given how relatively common SMA is compared to other genetic diseases, such as Cystic Fibrosis, there is not nearly enough awareness among both healthcare providers and the general public. We had never heard of SMA until Sophie was diagnosed, yet since then, we’ve seen just how widespread this disease is. In honor of SMA awareness month, we want to briefly explain the genetics behind SMA. Sophie has been diagnosed with SMA Type 1 (the most severe form), but keep in mind that there are 4 types of SMA (1-4).</span></div></div><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px;"><br />
<span style="letter-spacing: 0px;">- Roughly 1 out of every 40 people are unknowingly carriers of this genetic disease. </span></div><ul style="color: black;"></ul><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px;"><span style="letter-spacing: 0px;"></span></div><div style="color: black; font: 12px Arial; margin: 0px;"><span style="letter-spacing: 0px;">- SMA is an autosomal recessive genetic disease which is caused by a deletion or mutation in the Survival Motor Neuron 1 (SMN1) gene. </span></div><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px;"><span style="letter-spacing: 0px;"></span></div><div style="color: black; font: 12px Arial; margin: 0px;"><span style="letter-spacing: 0px;">- Most people have two copies of the SMN1 gene, one inherited from their mother and the other from their father. However, carriers of SMA have one normal copy of SMN1 and one mutated, or defective, copy. Having at least one normal SMN1 copy will allow a person to produce more than enough SMN protein to prevent any symptoms of SMA, so carriers do not show any symptoms of the disease, and generally are unaware that they are carriers. Both of us (Liz and Mike) were tested and confirmed to be carriers of SMA. </span></div><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px;"><span style="letter-spacing: 0px;"> </span></div><div style="color: black; font: 12px Arial; margin: 0px 0px 12px; text-align: justify;"><span style="letter-spacing: 0px;">- SMA usually occurs in children of couples who are both carriers of SMA (95% of the time), each parent having one normal and one defective SMN1 copy as described above. Because carriers of SMA have an equal chance of passing on a normal or defective copy of SMN1 as parents, there are three possible combinations of parental SMN1 copies that determine if the offspring will be affected by SMA. Children of two SMA carriers have a:</span></div><ul style="color: black;"><li style="font: 12px Arial; margin: 0px; text-align: justify;"><span style="letter-spacing: 0px;">25% chance of inheriting two normal copies of SMN1. These children will not have SMA and will not be carriers of SMA.</span></li>
<li style="font: 12px Arial; margin: 0px; text-align: justify;"><span style="letter-spacing: 0px;">50% chance of inheriting one normal and one defective copy of SMN1. These children will not have SMA but will be carriers of SMA (like their parents).</span></li>
<li style="font: 12px Arial; margin: 0px; text-align: justify;"><span style="letter-spacing: 0px;">25% chance of inheriting 2 defective copies of SMN1. These children will have SMA. </span></li>
</ul><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px;"><span style="letter-spacing: 0px;"></span></div><div style="color: black; font: 12px Helvetica; margin: 0px;"></div><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px; text-align: justify;"><span style="letter-spacing: 0px;"></span></div><div style="color: black; font: 12px Arial; margin: 0px; text-align: justify;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw0eQGuKhVdfK6DMmeHurgYOkhBo2M8aPAVeQJAZD22B_SkXRX6jUzLFaUeNDt6dTD43iBFlGUhLTXWOoEk6sJoWl568btkx38l_X_gT07t2QDL4K3INAIGNDAO5d1oaILJXf1HlrCcPVq/s1600/Recessive+Carrier+Chart" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="323" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw0eQGuKhVdfK6DMmeHurgYOkhBo2M8aPAVeQJAZD22B_SkXRX6jUzLFaUeNDt6dTD43iBFlGUhLTXWOoEk6sJoWl568btkx38l_X_gT07t2QDL4K3INAIGNDAO5d1oaILJXf1HlrCcPVq/s400/Recessive+Carrier+Chart" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"></div><br />
<span style="letter-spacing: 0px;">- Sophie obviously fell into the 25% chance of inheriting 2 defective copies of SMN1, (and was therefore affected with SMA), and any future children we might have will also have a 25% change of being affected (%’s are the same for all children). </span></div><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px; text-align: justify;"><span style="letter-spacing: 0px;"></span></div><div style="color: black; font: 12px Arial; margin: 0px; text-align: justify;"><span style="letter-spacing: 0px;">- We recently met with a genetics counselor to go over our options for future children. The genetics counselor said something interesting: most people are unknowingly carriers of ~6-7 genetic defects (such as SMA)...it just so happens that both of us have the same genetic defect, which is why Sophie is affected. Other autosomal recessive conditions that you may have heard of include Cystic Fibrosis and Tay Sachs. </span></div><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px;"><span style="letter-spacing: 0px;"></span></div><div style="color: black; font: 12px Arial; margin: 0px;"><span style="letter-spacing: 0px;">- Given that ~1 in 40 people are carriers, ~1/6000 babies is affected with SMA</span></div><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px;"><br />
<span style="letter-spacing: 0px;">- Anyone can be tested (via a simple blood test) to see if they are a carrier for SMA. This is something we will be big advocates for as we did not know that we are carriers. If people have the knowledge of their ‘carrier status‘ prior to having children, it gives them the opportunity to talk about family planning with their partner. Cystic Fibrosis carrier status is routinely checked with expecting mothers, but SMA is not (at least not in many OB offices yet). Our hope is that one day, SMA carrier status will fall under the routine category. </span></div><ul style="color: black;"></ul><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px;"><span style="letter-spacing: 0px;"></span></div><div style="color: black; font: 12px Arial; margin: 0px;"><span style="letter-spacing: 0px;">SMA research is largely underfunded. The medical community anticipates that a cure/treatment is very conceivable in the short-medium term future. We plan to get involved with both awareness and fundraising efforts in the future, however our first step is to spread the word about just how common and devastating this disease is. </span></div><div style="color: black; font: 12px Arial; margin: 0px; min-height: 14px;"><span style="letter-spacing: 0px;"></span></div><div style="color: black; font: 12px Arial; margin: 0px;"><span style="letter-spacing: 0px;">If you are interested in getting tested to see if you are a carrier for SMA, please speak with your doctor and/or a genetic counselor to see where you can get tested in your area! </span></div><div style="color: black; font: 12px Helvetica; margin: 0px; min-height: 14px;"><span style="letter-spacing: 0px;"></span></div><div style="color: #1022a3; font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="color: black; letter-spacing: 0px;">For more information on the gentetics of SMA, the following link is available: <span style="letter-spacing: 0px; text-decoration: underline;"><a href="http://www.fsma.org/UploadedFiles/ForMedia/Materials/fsmageneticsbrochure111909.pdf">http://www.fsma.org/UploadedFiles/ForMedia/Materials/fsmageneticsbrochure111909.pdf</a></span></span></div><div><br />
</div>Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com0tag:blogger.com,1999:blog-7394794579408965692.post-90223801193795152772011-07-31T11:07:00.000-07:002011-07-31T17:56:05.314-07:00Sophie's Entourage - Part 2<div style="text-align: left;"></div><div class="" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyU-PMXFJ24DqIU20VRvlydUXHcHEkBHalh7QC4ZTixwLS-ijxkv0Uf7Zm49WlVRmgBYXI7FtU5h0LkPuWR-2b9MvYeMdyILMyBHiNySAtcKWuXCpSii4e1Ytrnrcl_8Erk-uQ24mGTtsl/s1600/IMG_3745.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyU-PMXFJ24DqIU20VRvlydUXHcHEkBHalh7QC4ZTixwLS-ijxkv0Uf7Zm49WlVRmgBYXI7FtU5h0LkPuWR-2b9MvYeMdyILMyBHiNySAtcKWuXCpSii4e1Ytrnrcl_8Erk-uQ24mGTtsl/s320/IMG_3745.jpg" width="240" /></a></div><div style="text-align: center;"> Our Little Angel is growing!</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr9lqtfa1dGuqh9xN1qVvelo7zHIQ3f2PTduThItnYiztriOZ91fCO_nG20eavj6oJ__3HLCjz3B4cpGM0U2ZyR7BmpwgfqWsfG8HwP8QZkBOJ0Jm_1lCHiwC-E0tOwI91nDDKG22P009H/s1600/IMG_3738.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr9lqtfa1dGuqh9xN1qVvelo7zHIQ3f2PTduThItnYiztriOZ91fCO_nG20eavj6oJ__3HLCjz3B4cpGM0U2ZyR7BmpwgfqWsfG8HwP8QZkBOJ0Jm_1lCHiwC-E0tOwI91nDDKG22P009H/s320/IMG_3738.jpg" width="240" /></a></div><div style="text-align: center;"> One of Sophie's many smiles</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbjI_ICDfvdBwSnj0X6yeFV3ZiGGclHfKmARR4upR-YGP4Q0vzsqRu1_OOHFzJRDRwaDLm4S3bVgQ-WxiKkcvdxOgHP5a0loMVr_a9cz62jedq1l6OLTghReE-CSVEueSp5wod6R_Ypz_P/s1600/IMG_3633.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbjI_ICDfvdBwSnj0X6yeFV3ZiGGclHfKmARR4upR-YGP4Q0vzsqRu1_OOHFzJRDRwaDLm4S3bVgQ-WxiKkcvdxOgHP5a0loMVr_a9cz62jedq1l6OLTghReE-CSVEueSp5wod6R_Ypz_P/s320/IMG_3633.JPG" width="320" /></a></div><div style="text-align: center;"> Story time</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi38FYD0eTLruRX6jGBGrXQaGw8Mw0PZp4B0IlOHD-YYJPTX33QdCxqT-p3llMR3-YQmjwrQl6lTLuCUWpyVr5a2wTaPrUVk51FAH9SR31HNKoWYOQ89W2FI5x6WpJEg4W1jmj164M1B_9N/s1600/IMG_3562.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi38FYD0eTLruRX6jGBGrXQaGw8Mw0PZp4B0IlOHD-YYJPTX33QdCxqT-p3llMR3-YQmjwrQl6lTLuCUWpyVr5a2wTaPrUVk51FAH9SR31HNKoWYOQ89W2FI5x6WpJEg4W1jmj164M1B_9N/s320/IMG_3562.JPG" width="320" /></a></div><div style="text-align: center;"> Sophie's first boat ride</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjhF3LeyX73EzRRXaJ8Rm1sdhhm9b3jHqF9tRm5Dg2ZtLGRPDHDJI9RKPtKoUmc08q2Ids071lLpwcyBIf-hApGMY94w6OoGS1u4mLz9BtLNrhOttKG4kCAhfT7ykdg0LVWugoJqUUYlgw/s1600/IMG_3751.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjhF3LeyX73EzRRXaJ8Rm1sdhhm9b3jHqF9tRm5Dg2ZtLGRPDHDJI9RKPtKoUmc08q2Ids071lLpwcyBIf-hApGMY94w6OoGS1u4mLz9BtLNrhOttKG4kCAhfT7ykdg0LVWugoJqUUYlgw/s320/IMG_3751.jpg" width="240" /></a></div><div style="text-align: center;">Sophie loves balloons and playing with Daddy</div><div style="text-align: center;"><br />
</div><br />
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Sophie continues to do relatively well. She is smiling more and more, but it has been difficult to capture them in photos (she gets very focused on the camera). We continue to take Sophie for lots of walks in the neighborhood, and have found that her favorite place to go is Walgreens, probably due to all of the colors. Sophie has also been enjoying Elmo and Baby Einstein TV, reading colorful books, playing with her new toys, and watching the family dog Bella. Sophie becomes most vocal when watching the coverage on the debt ceiling and yells at the TV because she is sick of hearing about it (she really does babble loudly during the coverage).</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">Sophie had her 4 month check-up a few weeks ago and is tipping the scales at almost 11 pounds (5th percentile...what a fatty). The hospice nurse continues to make weekly visits to check Sophie's health and answer our questions. So far, her health has been great and she has not caught a cold. In the future, we expect to see her muscles weaken even more, and she will be more prone to pneumonia, which is generally what takes the lives of SMA babies. When that time comes, there are medications that can help keep her comfortable. In the meantime, we are doing everything we can to spoil our Sophie!!!</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><br />
</div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">We have had lots of visitors to meet our little sweetie...she is so loved! The following are additional pictures of Sophie's entourage:</div></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBHlHyUtBSmZLlbpUVSlWLROZ7AZYjHknQVaRo6bj6jIsc2y2nXYTRo1vbpo4vJb1-ALvFw3985lKl4V2H1OyOqd10PCdJ91JUu-TA-RFYLoWzH9aIXeRIAl7_hNr78_fcIJZO5WkxXeFa/s1600/IMG_3389.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBHlHyUtBSmZLlbpUVSlWLROZ7AZYjHknQVaRo6bj6jIsc2y2nXYTRo1vbpo4vJb1-ALvFw3985lKl4V2H1OyOqd10PCdJ91JUu-TA-RFYLoWzH9aIXeRIAl7_hNr78_fcIJZO5WkxXeFa/s320/IMG_3389.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tricia and Greyson</td></tr>
</tbody></table><div><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs1KcgzpBzpq7Lv_gTMGFl7BTXddViYY-t00C7U_2d43MGZYU_KdWu_Ipu8IwaJ-aLCc6hxImU_z8HpYSVEMVFqzjiuX5dj1uuejaw5vvQLPlVICd07QU9BOuSEnr3EPwWhwhlrmCsCCJ5/s1600/IMG_3617.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs1KcgzpBzpq7Lv_gTMGFl7BTXddViYY-t00C7U_2d43MGZYU_KdWu_Ipu8IwaJ-aLCc6hxImU_z8HpYSVEMVFqzjiuX5dj1uuejaw5vvQLPlVICd07QU9BOuSEnr3EPwWhwhlrmCsCCJ5/s320/IMG_3617.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lauren</td></tr>
</tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPXo-gvD_baihJ7DIGP2N2O8GvYi4Lir_BqATaWDJW8Dtc2X-Sv3Z0CgPj8pUPK0bp9tUWajMHGOF0pOpHG_1ZP9Xfnk_SrH76e4PH__EZpXZAQr5vo-CE2-9uv0fYc-BFVFE0eoDRKklV/s1600/IMG_3621.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPXo-gvD_baihJ7DIGP2N2O8GvYi4Lir_BqATaWDJW8Dtc2X-Sv3Z0CgPj8pUPK0bp9tUWajMHGOF0pOpHG_1ZP9Xfnk_SrH76e4PH__EZpXZAQr5vo-CE2-9uv0fYc-BFVFE0eoDRKklV/s320/IMG_3621.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jill</td></tr>
</tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAGD3jAjaiNPquGbYjPsfC0zTiV9EEP2c5FPjj2WlpG9N-ft_OX7dB7H44i-7iDMc8Bx_QYzIR5G5vhO_0ss1A9WhsZkNswY9TWoQp-5SLun7CTwr1KETlVi1fRf71q2EAJrdMfg2zVZvq/s1600/IMG_3676.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAGD3jAjaiNPquGbYjPsfC0zTiV9EEP2c5FPjj2WlpG9N-ft_OX7dB7H44i-7iDMc8Bx_QYzIR5G5vhO_0ss1A9WhsZkNswY9TWoQp-5SLun7CTwr1KETlVi1fRf71q2EAJrdMfg2zVZvq/s320/IMG_3676.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Great Grandma TerHorst</td></tr>
</tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDWpeX41jMuCSmLZMKu8yPVTcDv3Z5XpTbKemLqKixIbQBOpHsvGfacVAvBEiNyPWueLg7Pvv5jepbmzbMi1sChV3MpIGbWTg2e9HONMvPMhT7ZoEwUoNx6zvUFiaHjq_TEnbnpR8RckCM/s1600/IMG_3579.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDWpeX41jMuCSmLZMKu8yPVTcDv3Z5XpTbKemLqKixIbQBOpHsvGfacVAvBEiNyPWueLg7Pvv5jepbmzbMi1sChV3MpIGbWTg2e9HONMvPMhT7ZoEwUoNx6zvUFiaHjq_TEnbnpR8RckCM/s320/IMG_3579.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Great Uncle Dave and Aunt Barb (above), The Potgetters (below)</td></tr>
</tbody></table><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/AVvXsEgAd9IGR8nDo1TEm4xcnWYc96mZWvSP2jdFSVXuRKjOzAGF0kvWrwLWUyhLQ6XADNdDz570RLwZO4lPcN0_0u3WT39mXygUUV0fV4UIUcoyOzwHnzGIsOjKkanbJirr4eRrJPmhXtYFiCLc/s1600/IMG_3555.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAd9IGR8nDo1TEm4xcnWYc96mZWvSP2jdFSVXuRKjOzAGF0kvWrwLWUyhLQ6XADNdDz570RLwZO4lPcN0_0u3WT39mXygUUV0fV4UIUcoyOzwHnzGIsOjKkanbJirr4eRrJPmhXtYFiCLc/s320/IMG_3555.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVjYnMCEajsu_0rCtMIsCfZJkBecLvtrt9i5yk7Zr-3StJKz-byqSvfrYvNtI2Kt3cT3tI-2LkMrdCYL7b7FbKYz65aNseOlvoPP43KtACvMdLLQCrAsaeYuVuPFbbWJtPlwZd6PfcpsSI/s1600/IMG_3750.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVjYnMCEajsu_0rCtMIsCfZJkBecLvtrt9i5yk7Zr-3StJKz-byqSvfrYvNtI2Kt3cT3tI-2LkMrdCYL7b7FbKYz65aNseOlvoPP43KtACvMdLLQCrAsaeYuVuPFbbWJtPlwZd6PfcpsSI/s320/IMG_3750.jpg" width="240" /></a></div>Odey<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO4zNfDQhl__T7e0pl5HPi8NpHMdzQlDuofLpvqTXZgvlhl_dS0f2pPA-ZGNQWnxdwQHulJX3CVzXI1un8Kw2fTNEk-3LvCEnuRjzZJSb0oxcFLf_kvy-pqUKnlfit-dbBCMaNh7zRvwMq/s1600/IMG_3672.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO4zNfDQhl__T7e0pl5HPi8NpHMdzQlDuofLpvqTXZgvlhl_dS0f2pPA-ZGNQWnxdwQHulJX3CVzXI1un8Kw2fTNEk-3LvCEnuRjzZJSb0oxcFLf_kvy-pqUKnlfit-dbBCMaNh7zRvwMq/s320/IMG_3672.jpg" width="240" /></a></div>Great Aunt Sharon<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCZRELYTFmgPCrIBjXbEWeD7KwJ-xLS-G01Ll7jbyGa4nautyIrzwZItXb7_YKMZhKPZBeoRyQ0-IBjG1lP39ocCp_XJVbxYGNwmZGatgv3Uo4i2nT60Nzj-UvpV1kZFfWd6sdeFihJ4Xt/s1600/IMG_3673.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCZRELYTFmgPCrIBjXbEWeD7KwJ-xLS-G01Ll7jbyGa4nautyIrzwZItXb7_YKMZhKPZBeoRyQ0-IBjG1lP39ocCp_XJVbxYGNwmZGatgv3Uo4i2nT60Nzj-UvpV1kZFfWd6sdeFihJ4Xt/s320/IMG_3673.jpg" width="240" /></a></div>Great Aunt Laura<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2qzI_RV_UR2IME1IlhBua0rPzHkYGe41WCctTdUgZCgMtXzsmWozYTu5e9YF26LZnun1fQxoeXc6-6BGCb5HH-wQCIfO8Adb0_RIox1DbUYjzdbwtEfE_YVesJnHd4iuKa4CHJKVM7ZQd/s1600/IMG_3670.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2qzI_RV_UR2IME1IlhBua0rPzHkYGe41WCctTdUgZCgMtXzsmWozYTu5e9YF26LZnun1fQxoeXc6-6BGCb5HH-wQCIfO8Adb0_RIox1DbUYjzdbwtEfE_YVesJnHd4iuKa4CHJKVM7ZQd/s320/IMG_3670.JPG" width="320" /></a></div>Tricia and Caden<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdg-mlEUP6a8DMhJV9TFu-ZF4u1zlbNrGFXN6EGSORAjtjz-vLIjalYPTDiXKSgPTXah7QrrGA1Fhl5PWb3GRqKZMv55LrSnJLvQWSQYl2ShfvQsyiYZ07StGMs_DIwenRspG_4W8uK119/s1600/IMG_3661.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdg-mlEUP6a8DMhJV9TFu-ZF4u1zlbNrGFXN6EGSORAjtjz-vLIjalYPTDiXKSgPTXah7QrrGA1Fhl5PWb3GRqKZMv55LrSnJLvQWSQYl2ShfvQsyiYZ07StGMs_DIwenRspG_4W8uK119/s320/IMG_3661.JPG" width="320" /></a></div>The Petrosky's<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaFDr4eZ3DYz_4qpDcB5nUJol5KB7Vswl7d2zBAcD2YLzXeGNLR57GH1a1o0UfGul-VPsp0NKsug3Ss5WxlyAZYFx8OkiJXAgW_43DwUc3KCEgkaSAxT5R1vbnfdMPq3CLAPEY7yiac_z0/s1600/IMG_3648.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaFDr4eZ3DYz_4qpDcB5nUJol5KB7Vswl7d2zBAcD2YLzXeGNLR57GH1a1o0UfGul-VPsp0NKsug3Ss5WxlyAZYFx8OkiJXAgW_43DwUc3KCEgkaSAxT5R1vbnfdMPq3CLAPEY7yiac_z0/s320/IMG_3648.jpg" width="240" /></a></div>Andrew and Shana<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQCUWoJlPHy8qGHFkQeBVbjuDELcVb37X2gyiakw81hbzCuN9_kLx_rlJySfsJrHm3xu0hnwtyAUg_DotO8DHa9gPBSDNp8oHMChcssGarsHs_1s-IRTQGrao0ilND2xj2YCQUbmgDYZDu/s1600/IMG_3587.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQCUWoJlPHy8qGHFkQeBVbjuDELcVb37X2gyiakw81hbzCuN9_kLx_rlJySfsJrHm3xu0hnwtyAUg_DotO8DHa9gPBSDNp8oHMChcssGarsHs_1s-IRTQGrao0ilND2xj2YCQUbmgDYZDu/s320/IMG_3587.jpg" width="240" /></a></div>The LeTarte's<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOnBoEf9Iphyphenhyphencz6tHAOxqssux7mqwrwBkbW7S4hY6U40pUy0kiT0veHSP4D_CTGF1eO2Ll1G1ByfAz3N-BE1kzDi6oZKBN3k-9Cvp74l69bcdAVszSvV-p5W8HIN7nPgyTNGRDeitrfCfN/s1600/IMG_3588.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOnBoEf9Iphyphenhyphencz6tHAOxqssux7mqwrwBkbW7S4hY6U40pUy0kiT0veHSP4D_CTGF1eO2Ll1G1ByfAz3N-BE1kzDi6oZKBN3k-9Cvp74l69bcdAVszSvV-p5W8HIN7nPgyTNGRDeitrfCfN/s320/IMG_3588.jpg" width="240" /></a></div>The Belaire Cousins<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSgP2VNt9QMMsTat02juPVhGchUhK9VLtZlmVjxcvno1dGzWWJ4oEv5DdbEPiz8Dm0bt3xnhD_JWyYMlfDmbVYHFloVNvmlItQkIJa7aaG26B3hb4sboNgsdAy5ZPT0FN2ICBXOMqRoX44/s1600/IMG_3586.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSgP2VNt9QMMsTat02juPVhGchUhK9VLtZlmVjxcvno1dGzWWJ4oEv5DdbEPiz8Dm0bt3xnhD_JWyYMlfDmbVYHFloVNvmlItQkIJa7aaG26B3hb4sboNgsdAy5ZPT0FN2ICBXOMqRoX44/s320/IMG_3586.jpg" width="240" /></a></div>Great Aunt Deb (Uncle Greg too)<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaOkHJ1SAEX6Tp-BOO_WYVxCx9SYypjEBZwVf2muOGxWWhBLvAt0XMYvVb_Xzv5hZGlOr9xJ4Exj_ug2nBGyLT545CHaogF2p7ESDe7z6a-smpUbKKO3vGHJ-65bQrYcgTK_bJXSrYDnNk/s1600/IMG_3581.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaOkHJ1SAEX6Tp-BOO_WYVxCx9SYypjEBZwVf2muOGxWWhBLvAt0XMYvVb_Xzv5hZGlOr9xJ4Exj_ug2nBGyLT545CHaogF2p7ESDe7z6a-smpUbKKO3vGHJ-65bQrYcgTK_bJXSrYDnNk/s320/IMG_3581.JPG" width="320" /></a></div>Cousin Sharon and Glenn</td></tr>
</tbody></table><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheGgO17gAJN6LSVh5fdTY8Uhjy2SqXtbxFahoz-NvBeRNkrOvdfdw4FY66cu1N-1f-3EdojGLFkAW0DfMpius1j2T19PU9CU6XvFdOqWKWVKOxcxTUvjA-FgbWBHj_Q01_l1Mp7uZ5z6Up/s1600/IMG_3565.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheGgO17gAJN6LSVh5fdTY8Uhjy2SqXtbxFahoz-NvBeRNkrOvdfdw4FY66cu1N-1f-3EdojGLFkAW0DfMpius1j2T19PU9CU6XvFdOqWKWVKOxcxTUvjA-FgbWBHj_Q01_l1Mp7uZ5z6Up/s320/IMG_3565.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Adam and Natalie<br />
<br />
</td></tr>
</tbody></table></div></div>Liz and Mikehttp://www.blogger.com/profile/02716311581468004271noreply@blogger.com0tag:blogger.com,1999:blog-7394794579408965692.post-57461747383038806132011-06-26T16:56:00.000-07:002011-06-26T20:20:05.904-07:00Nonnie's Here<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_VAvvH6fqYF31U9FvIoxqDcro4BWOfk-vPuPjOYY8mV_pRyzyP_Q4Q2CRd6OHgkrpUgsMAz41TdspTElwLGzcRGI0YlEqGiIINtclZ63IJ6KoJ98J3JGAJNhW_oeQLfMtFTBCCMXYGfw/s1600/JDIMG_7203.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_VAvvH6fqYF31U9FvIoxqDcro4BWOfk-vPuPjOYY8mV_pRyzyP_Q4Q2CRd6OHgkrpUgsMAz41TdspTElwLGzcRGI0YlEqGiIINtclZ63IJ6KoJ98J3JGAJNhW_oeQLfMtFTBCCMXYGfw/s320/JDIMG_7203.jpg" alt="" id="BLOGGER_PHOTO_ID_5622684056183059282" border="0" /></a><br /><!--[if gte mso 9]><xml> 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Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;} </style> <![endif]-->First off, we would like to thank everyone for their kind words, emails, cards, prayers, and thoughts.<span style="mso-spacerun:yes"> </span>It’s so nice to have so much support for Sophie and know that we have so many wonderful people in our lives to travel this journey with us.<span style="mso-spacerun:yes"> </span><span style="mso-spacerun:yes"> </span> <p class="MsoNormal">Since our last update, we had the opportunity to meet with numerous specialists across different disciplines that helped us to learn more about Sophie’s condition and the different ways that it can be treated.<span style="mso-spacerun:yes"> </span><span style="mso-spacerun:yes"> </span>We have found the palliative care team through the local Children’s Hospital to be the best fit for us as they answered all of our questions and align with the treatment ideas we have so far.<span style="mso-spacerun:yes"> </span>The problem with SMA is that there is no cure or ‘great’ option for treatment.<span style="mso-spacerun:yes"> </span>With that said, we were relieved to learn that the palliative care team can keep Sophie relatively comfortable throughout her life.<span style="mso-spacerun:yes"> </span><span style="mso-spacerun:yes"> </span>The team has set up for a nurse to come to our home once a week to check on Sophie, and<span style="mso-spacerun:yes"> </span>as her condition progresses, the nurses (Lynda and Miriam whom are wonderful) will come as needed.<span style="mso-spacerun:yes"> </span></p> <p class="MsoNormal">Right now, Sophie is doing quite well.<span style="mso-spacerun:yes"> </span>She is smiling more than ever, cooing, and becoming even more aware of her surroundings.<span style="mso-spacerun:yes"> </span>She is such a sweetheart and makes people smile everywhere she goes.<span style="mso-spacerun:yes"> </span>Since Sophie cannot move as much as a normal baby, we find that she likes us to keep her on the move by walking and rocking.<span style="mso-spacerun:yes"> </span>She also loves to have her muscles and joints gently stretched and massaged.<span style="mso-spacerun:yes"> </span><span style="mso-spacerun:yes"> </span>We are prepared that Sophie will likely start to show some of the affects of her condition in the coming months, but right now, we are enjoying every second with her and are trying to give her as many experiences as possible.</p> <p class="MsoNormal">Nonnie (a.k.a. Grandma Fortuna) has moved in for the summer.<span style="mso-spacerun:yes"> </span>This has helped us tremendously as we now have an extra set of hands, and more importantly, lots more love for Sophie.<span style="mso-spacerun:yes"> </span>We have spent our days taking numerous walks, visiting with friends and family, grilling out, checking out various Chicago hotspots and watching Baby Einstein.</p> <p class="MsoNormal">We will continue to pass along updates as Sophie’s condition progresses, and stay tuned for more pictures along the way.</p> <p class="MsoNormal">Love,</p> <p class="MsoNormal">Liz, Mike & Sophie</p><p style="text-align: center;" class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbg378V8YneehcnaRM9R4C8AI-DwHK3tvFgWwNliNVi310L6lbx-tU2chbbbSff7B18Vcj8sQkRMPzWGb8vzTu4i4NamFYeZd72vQu8r3efePiONHCOMB30PwRMI8mHT3b1hPvnVcV-WI/s1600/JDIMG_7321.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbg378V8YneehcnaRM9R4C8AI-DwHK3tvFgWwNliNVi310L6lbx-tU2chbbbSff7B18Vcj8sQkRMPzWGb8vzTu4i4NamFYeZd72vQu8r3efePiONHCOMB30PwRMI8mHT3b1hPvnVcV-WI/s320/JDIMG_7321.jpg" alt="" id="BLOGGER_PHOTO_ID_5622684685127717154" border="0" /></a></p><p style="text-align: center;" class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPsAObRs8e_5tUrCVnRENyF33xWWyRO6x4zaUfMlZcsT8nU6lVv6-PNDLeAKt01k2Hx9N8xm3a-mJarDRpn3EWEd_lYd3yeHtR5oMlxxe7RimlSYtIi56bLFovpHS1gtu0N4ShjBRTn2o/s1600/JD1IMG_7279.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPsAObRs8e_5tUrCVnRENyF33xWWyRO6x4zaUfMlZcsT8nU6lVv6-PNDLeAKt01k2Hx9N8xm3a-mJarDRpn3EWEd_lYd3yeHtR5oMlxxe7RimlSYtIi56bLFovpHS1gtu0N4ShjBRTn2o/s320/JD1IMG_7279.jpg" alt="" id="BLOGGER_PHOTO_ID_5622685839402449842" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOIuscw6ucIaNsTqwv2KpLwUNu_4m51ZFpWcFLoBNq1xKwM2abFsbJLmrswY8Az3WGQuNhKrKjRsoxZTeRP5OZQ30ccgnK_sPaVt3UCiC4iYvKI5HydBEGjVeyhqMxVYWrRAN1cx8clXo/s1600/JD-1IMG_7191.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOIuscw6ucIaNsTqwv2KpLwUNu_4m51ZFpWcFLoBNq1xKwM2abFsbJLmrswY8Az3WGQuNhKrKjRsoxZTeRP5OZQ30ccgnK_sPaVt3UCiC4iYvKI5HydBEGjVeyhqMxVYWrRAN1cx8clXo/s320/JD-1IMG_7191.jpg" alt="" id="BLOGGER_PHOTO_ID_5622686272663366162" border="0" /></a></p><p style="text-align: center;" class="MsoNormal"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5s5K6ZJOTHvDq4BKVyXoIvKMybPBfHwHd0Xmm_tvVLdPOgCf2xg0FrxWk_qfl68_jKDutJis6vNlJtzedOGW4hKOyHxpS7Tg2NfcuGod16VMzPo93YF2Wi29wdj_mM9qy4E_7E_5Wcqg/s1600/IMG_3460.JPG"><img style="cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5s5K6ZJOTHvDq4BKVyXoIvKMybPBfHwHd0Xmm_tvVLdPOgCf2xg0FrxWk_qfl68_jKDutJis6vNlJtzedOGW4hKOyHxpS7Tg2NfcuGod16VMzPo93YF2Wi29wdj_mM9qy4E_7E_5Wcqg/s320/IMG_3460.JPG" alt="" id="BLOGGER_PHOTO_ID_5622733716034764274" border="0" /></a></p>Lizhttp://www.blogger.com/profile/16003719439113063915noreply@blogger.com1tag:blogger.com,1999:blog-7394794579408965692.post-34303646089244904472011-05-16T16:44:00.000-07:002011-07-30T20:43:30.565-07:00Sophie's Entourage - Part I<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDz1RObriBA_XvgCLFkR2IK1ViPrN3DGKf5yPz6-553I_Prc9WszOEAveJS6e4iqpIbiX050Mx7ThInmj886aH3OAOu0ZupYK929Z-CwqKjodkZHcqNqvs8krlsaRPXtgONrNI6bP5Tp0/s1600/JDIMG_7259.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622732822238034770" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDz1RObriBA_XvgCLFkR2IK1ViPrN3DGKf5yPz6-553I_Prc9WszOEAveJS6e4iqpIbiX050Mx7ThInmj886aH3OAOu0ZupYK929Z-CwqKjodkZHcqNqvs8krlsaRPXtgONrNI6bP5Tp0/s320/JDIMG_7259.jpg" style="cursor: hand; cursor: pointer; height: 214px; width: 320px;" /></a>Here are some of my favorite people:<br />
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<div style="text-align: center;"><br />
</div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgga2kPF4SCgWoqgdaWhelUnFH_dR5Z21-gaMQVp_k9KOxOBsv7M7lA4aBxojWX0lX4EAbvPOqX2Y4lFbR0K49DTI1l_FeRdDWSFqipXAElXyit68a5AlS4EOf7kHmAzcS5EGOITUr-0p4/s1600/IMG_3244.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622732179929530258" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgga2kPF4SCgWoqgdaWhelUnFH_dR5Z21-gaMQVp_k9KOxOBsv7M7lA4aBxojWX0lX4EAbvPOqX2Y4lFbR0K49DTI1l_FeRdDWSFqipXAElXyit68a5AlS4EOf7kHmAzcS5EGOITUr-0p4/s320/IMG_3244.JPG" style="cursor: hand; cursor: pointer; height: 320px; width: 240px;" /></a>Bella...curious<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2yiWEUzWff-6UJQzRlsClrYKsxEq2o2OapHQ3d9aEqf5mm0S-L01g6aHJnuoFSsynDG7TnbM6FOIQXpXaLCnv76sIZAFcYK-wp4PeyDqOXzF6MsaxJt52cLyMFf-i5i_oNOpB0zOC3Do/s1600/IMG_3475.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622731726261747378" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2yiWEUzWff-6UJQzRlsClrYKsxEq2o2OapHQ3d9aEqf5mm0S-L01g6aHJnuoFSsynDG7TnbM6FOIQXpXaLCnv76sIZAFcYK-wp4PeyDqOXzF6MsaxJt52cLyMFf-i5i_oNOpB0zOC3Do/s320/IMG_3475.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>Eric B.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzmwByzI_SE9lOF07fxbs7m3d0iH71mnlkTy61Mc_YhELTbem_42v9e8EbWK36ClSdjRSo9Nhgp18Pl1wPwKpJqYLax2kzKSGztfQbJQff9R_UTgY8pu6Ma0M9DU9KXhEmaZMB8AAbvro/s1600/IMG_3478.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622731525233565458" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzmwByzI_SE9lOF07fxbs7m3d0iH71mnlkTy61Mc_YhELTbem_42v9e8EbWK36ClSdjRSo9Nhgp18Pl1wPwKpJqYLax2kzKSGztfQbJQff9R_UTgY8pu6Ma0M9DU9KXhEmaZMB8AAbvro/s320/IMG_3478.JPG" style="cursor: hand; cursor: pointer; height: 320px; width: 240px;" /></a>Nurse Lynda<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Dv3DVe-b8phJKcymmYcGj_jNvBIDEXMrRXmV5VUaUu1_h7YtQcyMK2lVNYqR-PKVKi2a9g8G6C0sMai70PJTwsE5n5_AkPmRSxrNlsMatkijVtPKZq751F2BDYhsBL2-IkvlDNjN43Y/s1600/IMG_3502.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622731326005904338" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Dv3DVe-b8phJKcymmYcGj_jNvBIDEXMrRXmV5VUaUu1_h7YtQcyMK2lVNYqR-PKVKi2a9g8G6C0sMai70PJTwsE5n5_AkPmRSxrNlsMatkijVtPKZq751F2BDYhsBL2-IkvlDNjN43Y/s320/IMG_3502.JPG" style="cursor: hand; cursor: pointer; height: 320px; width: 240px;" /></a>Chelsea and Alex<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizXvSu_tcSrpVN5DDKkizws5zJbenpFLoErH7NkcwuYxunk-wsXyunQ_EvRAcbdDq3xbpe6X8qEPcS3taD-c3lKbTIGUHVhHWgQvTUXPlR0s2_zqrc73s5XTDHmHPA-HMV7_S_GTkxxCE/s1600/IMG_3450.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622731084426336018" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizXvSu_tcSrpVN5DDKkizws5zJbenpFLoErH7NkcwuYxunk-wsXyunQ_EvRAcbdDq3xbpe6X8qEPcS3taD-c3lKbTIGUHVhHWgQvTUXPlR0s2_zqrc73s5XTDHmHPA-HMV7_S_GTkxxCE/s320/IMG_3450.JPG" style="cursor: hand; cursor: pointer; height: 320px; width: 240px;" /></a>Juli and Andy<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjzkdHK3AggwTP73HG76Ijsgp6iml41Dhyphenhyphen8U6qbAABRETuhmAlRl0CnrqP5UAUOQuQeDQp4igc9m8mTLtJUDJLLMXlos6DVAnPil9ee9pjRJK7-AP3pK4DY2xMArLYpA5GsrNNu5TobzQ/s1600/IMG_3474.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622730879431630994" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjzkdHK3AggwTP73HG76Ijsgp6iml41Dhyphenhyphen8U6qbAABRETuhmAlRl0CnrqP5UAUOQuQeDQp4igc9m8mTLtJUDJLLMXlos6DVAnPil9ee9pjRJK7-AP3pK4DY2xMArLYpA5GsrNNu5TobzQ/s320/IMG_3474.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>The Walker Family<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF4MgpF8lVVkeetJuE4bpXIxdXuxrSwubhfwmi9JOor9likjlR5GdVEAgjCSfHzn6UNoeEAkBiscneJiq5TF7kr3AjrxNTlynlUdGynh7cZSSVeQSwHIVcD_1sZFJsJRWU_1KHXXI7Vek/s1600/IMG_3420.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622730679604612962" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF4MgpF8lVVkeetJuE4bpXIxdXuxrSwubhfwmi9JOor9likjlR5GdVEAgjCSfHzn6UNoeEAkBiscneJiq5TF7kr3AjrxNTlynlUdGynh7cZSSVeQSwHIVcD_1sZFJsJRWU_1KHXXI7Vek/s320/IMG_3420.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>Aunt Katie<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8ZSSoudKplNLLph6zTdKi1BmgjtMdk3X-z_gn30Sz1PP9T0G6a63CrXWYlNoayAM388nj3H7ISuckmmowwb8fmPdGebaPsfVEM-tEWVucpCd_g6o-FV4AF-EBdBpCGi2rF7zZeE3h83E/s1600/IMG_3417.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622730319669166946" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8ZSSoudKplNLLph6zTdKi1BmgjtMdk3X-z_gn30Sz1PP9T0G6a63CrXWYlNoayAM388nj3H7ISuckmmowwb8fmPdGebaPsfVEM-tEWVucpCd_g6o-FV4AF-EBdBpCGi2rF7zZeE3h83E/s320/IMG_3417.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>Tim and Norah<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRi67VSxeAZY0xCgJ_eVL6J2rmb1heUvvoRy3QZMfPwVca5Bz96vw5w5r-s1iKPY7xYBYelO_wAFxm51qbyyrFGlwobH8BKVJmVxl2HT7T5qS_2kgG1fQJsiexu2R4ojV5xMPa7WZ_UJM/s1600/IMG_3413.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622730066376552434" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRi67VSxeAZY0xCgJ_eVL6J2rmb1heUvvoRy3QZMfPwVca5Bz96vw5w5r-s1iKPY7xYBYelO_wAFxm51qbyyrFGlwobH8BKVJmVxl2HT7T5qS_2kgG1fQJsiexu2R4ojV5xMPa7WZ_UJM/s320/IMG_3413.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>Monica and Norah<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6TRcsfEmk45Oft89amCx2Fhyphenhyphen3fHnz5lQ7oyqsVswHnLPtQJgjj5IRmooI68SFCBuHQVInr3AFc_PjnBJBy1sGSOHlObRBZxMxN1XYXZbg7bmdfHL0QNb13LZUBiwGC7aBhPJYn7ZelHU/s1600/IMG_3456.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622729807326614210" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6TRcsfEmk45Oft89amCx2Fhyphenhyphen3fHnz5lQ7oyqsVswHnLPtQJgjj5IRmooI68SFCBuHQVInr3AFc_PjnBJBy1sGSOHlObRBZxMxN1XYXZbg7bmdfHL0QNb13LZUBiwGC7aBhPJYn7ZelHU/s320/IMG_3456.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>Uncle David, Aunt Janet, Emma<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigujQH8sfBzek-wADmlct1b2my8h4Fo9BamHX6Yd1ij23KKKPAUTTCzgbHVewpBe3nI1AEQjHAxAUNL_ZX9SuHDXWn4pUcmkPrTnLOjvHkelmHwnzi7lcZaSdQZFhX7rvSitIy5HNG5TE/s1600/IMG_3356.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622729527280832498" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigujQH8sfBzek-wADmlct1b2my8h4Fo9BamHX6Yd1ij23KKKPAUTTCzgbHVewpBe3nI1AEQjHAxAUNL_ZX9SuHDXWn4pUcmkPrTnLOjvHkelmHwnzi7lcZaSdQZFhX7rvSitIy5HNG5TE/s320/IMG_3356.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>Craig, Cara, and Noelle (Sophie not pictured)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1el1MDkuvxbT5_ulc3HBnlKF1mLpxpXBch2hKJOlygHV07tX5rgAN6dDnl-CTEixTUQ7aEkzZ5UctB4a407N5IBaa8Oy7Gt4O8Ge0TdFKGJASiAzhMpeH7i1W9tNfyEJO04pSUh0x6sQ/s1600/IMG_3391.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622729266512467698" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1el1MDkuvxbT5_ulc3HBnlKF1mLpxpXBch2hKJOlygHV07tX5rgAN6dDnl-CTEixTUQ7aEkzZ5UctB4a407N5IBaa8Oy7Gt4O8Ge0TdFKGJASiAzhMpeH7i1W9tNfyEJO04pSUh0x6sQ/s320/IMG_3391.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>The Oatleys<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2TtxaPqtE-8QM0vkYaOV51uVXy-tFQ1e3cacHb9URVQ1k81sp6uifauIlK-1BgpyS983VGe1ZiqsskD1jf3lBv7FCFJuk5nmQZaK7mCO646J8IxI6rqVaCwIoUrCBN0HRGlyocsIiaqs/s1600/IMG_3384.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622728978533033138" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2TtxaPqtE-8QM0vkYaOV51uVXy-tFQ1e3cacHb9URVQ1k81sp6uifauIlK-1BgpyS983VGe1ZiqsskD1jf3lBv7FCFJuk5nmQZaK7mCO646J8IxI6rqVaCwIoUrCBN0HRGlyocsIiaqs/s320/IMG_3384.JPG" style="cursor: hand; cursor: pointer; height: 320px; width: 240px;" /></a>Cheryl Davis and Family<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_HSKagriOL7t2SUzmFb8_nXuaaNpbE_VZSAB0KcT9g61g8-Cyc4H4Z8-bSKqTHVRHHsdm_1_D_Ge2eY_vrSQjwvqfhseU0K30unUces1lAgEpvrJkceRA4DO1aB_ZveKs3SlIZfzF-LE/s1600/IMG_3334.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622728707348765682" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_HSKagriOL7t2SUzmFb8_nXuaaNpbE_VZSAB0KcT9g61g8-Cyc4H4Z8-bSKqTHVRHHsdm_1_D_Ge2eY_vrSQjwvqfhseU0K30unUces1lAgEpvrJkceRA4DO1aB_ZveKs3SlIZfzF-LE/s320/IMG_3334.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>Zoe and Tag<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2yicsL3IkDf53VWZpt0UwDbgOdr_bZdIyGDRrN31lDKFQGzOg6rfZ1dTjrUysCCYdTWoafKknIfXRKPTqNa78N_dt_PZk9l-c0FpNoChjziXjitqLAk9b3BAHKqWrDgvsuxmXbXw64zg/s1600/IMG_3343.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622728314033005234" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2yicsL3IkDf53VWZpt0UwDbgOdr_bZdIyGDRrN31lDKFQGzOg6rfZ1dTjrUysCCYdTWoafKknIfXRKPTqNa78N_dt_PZk9l-c0FpNoChjziXjitqLAk9b3BAHKqWrDgvsuxmXbXw64zg/s320/IMG_3343.JPG" style="cursor: hand; cursor: pointer; height: 320px; width: 240px;" /></a>Uncle Brad and Aunt Jenny<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSgSQbyNsOB93Du5qHvuUshu9gg4-8vX4bk_lMKo3bI7vVx6p-dnr84rgaZczUUXk7XyOzh2LjUIe72IDXKIb427gx9ivw3ZSgQUpCB8lcPTxuLBEbm4aUiDfU9vfAJHdxiACgn11E8V8/s1600/IMG_3278.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5622719743296252002" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSgSQbyNsOB93Du5qHvuUshu9gg4-8vX4bk_lMKo3bI7vVx6p-dnr84rgaZczUUXk7XyOzh2LjUIe72IDXKIb427gx9ivw3ZSgQUpCB8lcPTxuLBEbm4aUiDfU9vfAJHdxiACgn11E8V8/s320/IMG_3278.JPG" style="cursor: hand; cursor: pointer; height: 240px; width: 320px;" /></a>Carla and Joel<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd_vj7anXVDJWoaxTakno8jo1Gyekqyg4UL7eFhd8o-TgsMJPcAebGsVp75W1tEA50OxBFcg18NTx8wOG_6EykKjOi_8C9pfLvYBAr9Ock7PvUJbAtav4O5RTpVDkznINk9GkXZRk0YFI/s1600/IMG_3123.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607755074648979986" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd_vj7anXVDJWoaxTakno8jo1Gyekqyg4UL7eFhd8o-TgsMJPcAebGsVp75W1tEA50OxBFcg18NTx8wOG_6EykKjOi_8C9pfLvYBAr9Ock7PvUJbAtav4O5RTpVDkznINk9GkXZRk0YFI/s320/IMG_3123.JPG" style="cursor: hand; cursor: pointer; float: left; height: 240px; margin: 0 10px 10px 0; width: 320px;" /></a><br />
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Katie and Jim<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPAk9VU9b1D3iioR-qnluWF5GR3ad8MZNjDygMbvx9nVcJbzPqYzIMldY4pPMx9FaxZJlXhJPRDjNLupPGlYhbE_Y3biS3wsulMMcEWXizn0-cv3YOSIYYyOl8YiW0x1nwy98XrvhvXWs/s1600/IMG_3174.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607708150969329154" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPAk9VU9b1D3iioR-qnluWF5GR3ad8MZNjDygMbvx9nVcJbzPqYzIMldY4pPMx9FaxZJlXhJPRDjNLupPGlYhbE_Y3biS3wsulMMcEWXizn0-cv3YOSIYYyOl8YiW0x1nwy98XrvhvXWs/s320/IMG_3174.JPG" style="cursor: hand; cursor: pointer; float: left; height: 320px; margin: 0 10px 10px 0; width: 240px;" /></a><br />
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Cousin Zoe<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWxNfzc7eUW3XZK827me6ZexnF8ojurI83-k6NCE1Op72fHRqxZCmRV1vP5P0Ypkxp5956TVhaZ7qr4k807LORATehnTZfA1xe4l4x6HAOqtvpVUtwZWIFbhZlo2KZNKzlN2H7n02G-BQ/s1600/IMG_3213.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607510272011410658" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWxNfzc7eUW3XZK827me6ZexnF8ojurI83-k6NCE1Op72fHRqxZCmRV1vP5P0Ypkxp5956TVhaZ7qr4k807LORATehnTZfA1xe4l4x6HAOqtvpVUtwZWIFbhZlo2KZNKzlN2H7n02G-BQ/s320/IMG_3213.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a><br />
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Great Grandma Gerber<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP2s9VvHfQTgtYf-1us_DS3JIqqEebyz-zNQb5ZJmtIgVTd4gVVkmqGMxzZLCTWB7CMHm-_hLlkAYe37oT6U-7EF0Zp0fbUMh8cNO9Z8Exs387at6oAXfR-nyu5-OchBz3__gM9QwbJDM/s1600/IMG_3209.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607509902089963186" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP2s9VvHfQTgtYf-1us_DS3JIqqEebyz-zNQb5ZJmtIgVTd4gVVkmqGMxzZLCTWB7CMHm-_hLlkAYe37oT6U-7EF0Zp0fbUMh8cNO9Z8Exs387at6oAXfR-nyu5-OchBz3__gM9QwbJDM/s320/IMG_3209.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a><br />
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Aunt Cookie<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2_9DS267afItVfjVJU7LZDhKFyXIGAh0h2gxq1t99trjBNF5DB0JbIdYzPA9Zue0KUKAsU5HoohGTJ9g7g3JnWU-kjMqAhfVX1YIKvGSu8XLiNf3IPcOfvGmsSSRc7ZgsL8tYAP-AZek/s1600/IMG_3205.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607509595263886546" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2_9DS267afItVfjVJU7LZDhKFyXIGAh0h2gxq1t99trjBNF5DB0JbIdYzPA9Zue0KUKAsU5HoohGTJ9g7g3JnWU-kjMqAhfVX1YIKvGSu8XLiNf3IPcOfvGmsSSRc7ZgsL8tYAP-AZek/s320/IMG_3205.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a><br />
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Cousin Harper and Aunt Breanne<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3Dz_a7EPW9ZBiItt_KhgK1NlNAbxwTaOFdPDO0QlWnBS3Ty_9sbuxHSSZuSmLsL-jJm18mMB2G-5Z02IVJndJP4byNOSrhh6L84g4PV2w9ifu_8YxqgmthKnKh_stsyXJecx1RgORKQs/s1600/IMG_3201.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607509250904393938" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3Dz_a7EPW9ZBiItt_KhgK1NlNAbxwTaOFdPDO0QlWnBS3Ty_9sbuxHSSZuSmLsL-jJm18mMB2G-5Z02IVJndJP4byNOSrhh6L84g4PV2w9ifu_8YxqgmthKnKh_stsyXJecx1RgORKQs/s320/IMG_3201.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a><br />
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4 Generations<br />
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<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2U0c_Gql4iT7CWk1HKiPKauWyCTvW79WnenTw3_qAdfBRDKo_kWZ-LZ0Vv389Pru71MwXrVSkjpC0j-J4LQcDRUcPbCHVNuqxlz-IrKlp0rX7Qq9ceLetieTvQvUbbPDU_gmweglDJpE/s1600/IMG_3098.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607508980415051874" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2U0c_Gql4iT7CWk1HKiPKauWyCTvW79WnenTw3_qAdfBRDKo_kWZ-LZ0Vv389Pru71MwXrVSkjpC0j-J4LQcDRUcPbCHVNuqxlz-IrKlp0rX7Qq9ceLetieTvQvUbbPDU_gmweglDJpE/s320/IMG_3098.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a> </div><br />
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Uncle Joel<br />
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<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMnXAyYxk_aHmqBQuV3H-IhGNzlhBYtsgydtsGnXRhoP2ZfHWTfPddkoPhuTgpaguW8jyKzSzmRDq66x0_s8TEPUmFxwiOVlSGgwb-JEObE7SEj-TS0-itX_aT7-2CYAfEx5GpcjL5xOk/s1600/IMG_3184.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607508572898642898" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMnXAyYxk_aHmqBQuV3H-IhGNzlhBYtsgydtsGnXRhoP2ZfHWTfPddkoPhuTgpaguW8jyKzSzmRDq66x0_s8TEPUmFxwiOVlSGgwb-JEObE7SEj-TS0-itX_aT7-2CYAfEx5GpcjL5xOk/s320/IMG_3184.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a> </div><br />
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Uncle Craig<br />
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<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieVMXV16SeNuYYukzsTkgjAMIIc1jYeMfBNfq_esCpFFYNyhPuGcfQcCLKWYbiFWZCisLB28wOLMNf6v1UzvZYpsRKwfx2o_9hdrvE-bDfYYmMcV2nD061QGbtA3fsCjoBIxFeCZD3Dsk/s1600/IMG_3182.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607508299089297170" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieVMXV16SeNuYYukzsTkgjAMIIc1jYeMfBNfq_esCpFFYNyhPuGcfQcCLKWYbiFWZCisLB28wOLMNf6v1UzvZYpsRKwfx2o_9hdrvE-bDfYYmMcV2nD061QGbtA3fsCjoBIxFeCZD3Dsk/s320/IMG_3182.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a></div><br />
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Cousin Harper<br />
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<div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtG_5rSbsMQ_2LFfzNlKB4I3ub4ej3z9mA_TH51WbAs7oWSFACgcwop5USRfHadm7pn6kTAtQMFG7FEQW9cc9BKNKSmM6us4SusP_DhJyZ9BPG5t295HP2KJfSA0_Kl7cUYBMp1a1lebA/s1600/IMG_3125.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607507968252846322" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtG_5rSbsMQ_2LFfzNlKB4I3ub4ej3z9mA_TH51WbAs7oWSFACgcwop5USRfHadm7pn6kTAtQMFG7FEQW9cc9BKNKSmM6us4SusP_DhJyZ9BPG5t295HP2KJfSA0_Kl7cUYBMp1a1lebA/s320/IMG_3125.JPG" style="cursor: hand; float: left; height: 320px; margin: 0px 10px 10px 0px; width: 240px;" /></a> </div><br />
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Grandpa Fortuna<br />
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<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFhQ_22Lv1qK-mi8akDHldXnfcrMYQux_F0PVc-FhDZAi32THYhJMVvL2Axs9e8_kWbWblXOQVYbozOI17U81LuW6TuriRKyCKb6-jfzixU9P9qhM-aKFwDKefEGhon_TL5pUsEjFWG-I/s1600/IMG_3106.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607507702866477234" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFhQ_22Lv1qK-mi8akDHldXnfcrMYQux_F0PVc-FhDZAi32THYhJMVvL2Axs9e8_kWbWblXOQVYbozOI17U81LuW6TuriRKyCKb6-jfzixU9P9qhM-aKFwDKefEGhon_TL5pUsEjFWG-I/s320/IMG_3106.JPG" style="cursor: hand; float: left; height: 320px; margin: 0px 10px 10px 0px; width: 240px;" /></a> </div><br />
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Grandpa Terhorst<br />
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<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMKMh4NxumnHoBjLL6suBNvh07lfju4v3CMXJYKOgwklRm2bLyZPVU5a36Vvq_J9dvo6iI9j6cE64AI2rFCuHBF5e_b6TIwMKoak7N0qIYn1L06svkVZ_LEo14tbqc2RQqvcYIIF55Iv4/s1600/IMG_3105.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607507319223393314" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMKMh4NxumnHoBjLL6suBNvh07lfju4v3CMXJYKOgwklRm2bLyZPVU5a36Vvq_J9dvo6iI9j6cE64AI2rFCuHBF5e_b6TIwMKoak7N0qIYn1L06svkVZ_LEo14tbqc2RQqvcYIIF55Iv4/s320/IMG_3105.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a></div><br />
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Grandma Terhorst<br />
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<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0PNjPDqMQGJmcdWc4cIA-sqYw_rwSTJzG9j35kWi8lIp6xSy4x562Ne8nICXUj71IYUqwMTVJnGLLHaSS-IlsXuQ0pGjKChH_M2qBGYlCmLkS7wIJ76nxEGsmimvbyu6XJs0CiFSyAnw/s1600/IMG_3178.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607507040742387154" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0PNjPDqMQGJmcdWc4cIA-sqYw_rwSTJzG9j35kWi8lIp6xSy4x562Ne8nICXUj71IYUqwMTVJnGLLHaSS-IlsXuQ0pGjKChH_M2qBGYlCmLkS7wIJ76nxEGsmimvbyu6XJs0CiFSyAnw/s320/IMG_3178.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a> </div><br />
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Sarah, Ryan, and cousin Beech-Sobczak<br />
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<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF2yVJMlUp32INYXuFa8kcX1MwaTX9fKSwgzpUWXAOGPy4yrQ_FFXkDRXO3Bf1lDGsokz4_00PO1anQ7LMcDVM05V0IZA1hyphenhyphenAsU7Ll8HT85BM2kSTAXR_El4YbezVb4PoWN91xtOtpvj0/s1600/IMG_3142.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607506609590865730" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF2yVJMlUp32INYXuFa8kcX1MwaTX9fKSwgzpUWXAOGPy4yrQ_FFXkDRXO3Bf1lDGsokz4_00PO1anQ7LMcDVM05V0IZA1hyphenhyphenAsU7Ll8HT85BM2kSTAXR_El4YbezVb4PoWN91xtOtpvj0/s320/IMG_3142.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a></div><br />
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Kimmie V.<br />
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Catie and Andrew<br />
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Nonnie, AKA Grandma Fortuna<br />
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<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDMtkrT-bWw5VKKo2zzooCou7NBhwv5lhcXzxeG0NIcMoW5c7TW3il2KKhwV-GKz2No5awwGtqyE1mLvlOlWl6UGGed7r6a69IM2Fzz8J-Cirr0RH7GT-Szkr_tyAr48yw2dh6-xPcVew/s1600/IMG_3168.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607505011224740834" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDMtkrT-bWw5VKKo2zzooCou7NBhwv5lhcXzxeG0NIcMoW5c7TW3il2KKhwV-GKz2No5awwGtqyE1mLvlOlWl6UGGed7r6a69IM2Fzz8J-Cirr0RH7GT-Szkr_tyAr48yw2dh6-xPcVew/s320/IMG_3168.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a><br />
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Dad<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdKv7SlkSxBRd4vyIMyKcrch6geK_2Z3qRep2gYk7ySrusZY5IvAq28G-TNcE-axXzQqZkZ0Lyw4bTgaoXySJceDjkfGSZ8JueyBoTqkxb5n8vyzcvWul6Bd8bmu28FUlMBwGfcBUQbTg/s1600/IMG_3015.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5607489406577985506" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdKv7SlkSxBRd4vyIMyKcrch6geK_2Z3qRep2gYk7ySrusZY5IvAq28G-TNcE-axXzQqZkZ0Lyw4bTgaoXySJceDjkfGSZ8JueyBoTqkxb5n8vyzcvWul6Bd8bmu28FUlMBwGfcBUQbTg/s320/IMG_3015.JPG" style="cursor: hand; float: left; height: 240px; margin: 0px 10px 10px 0px; width: 320px;" /></a><br />
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Mom<br />
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</div><div></div></div></div></div></div></div>Lizhttp://www.blogger.com/profile/16003719439113063915noreply@blogger.com1tag:blogger.com,1999:blog-7394794579408965692.post-64109584793094058642011-05-16T09:36:00.001-07:002013-01-15T19:34:45.748-08:00Sophie's Journey<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVF3QaiGQJ1p8rVxZuxz8EFeMSYR7s1QYZiAqwrJGJuR2TjMkLRmZTNyxxQTKB8qFuy5chjrpOAGggM_GpmV1N7_imBEQ2IJa7M5gXds2EIdjvL50zJyM3TE8ZYEmLh9lCUaF0ctdcZXy0/s1600/Sophie+-+10.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVF3QaiGQJ1p8rVxZuxz8EFeMSYR7s1QYZiAqwrJGJuR2TjMkLRmZTNyxxQTKB8qFuy5chjrpOAGggM_GpmV1N7_imBEQ2IJa7M5gXds2EIdjvL50zJyM3TE8ZYEmLh9lCUaF0ctdcZXy0/s320/Sophie+-+10.jpg" width="238" /></a></div>
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<span style="color: black; font-family: Calibri;">Sophie</span></div>
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<span style="mso-bookmark: OLE_LINK16;"><span style="mso-bookmark: OLE_LINK13;"><span style="mso-bookmark: OLE_LINK14;"><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="font-family: Calibri;"><span style="color: black;">Our beautiful daughter Sophia Kathleen TerHorst (“Sophie”) was born on March 12, 2011.<span style="mso-spacerun: yes;"> </span>We love and adore her so much… beyond our wildest imagination… and cherish all of the incredible experiences we’ve shared with her so far.<span style="mso-spacerun: yes;"> </span>In almost every way, she is a normal 9 week old … eating, pooping, and occasionally sleeping.<span style="mso-spacerun: yes;"> </span>She’s very curious and aware of her surroundings.</span></span></span></span></span></span></span><span style="color: black;"><br />
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<span style="mso-bookmark: OLE_LINK13;"><span style="mso-bookmark: OLE_LINK14;"><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><u><span style="color: black; font-family: Calibri;"><b>The first few weeks:</b></span></u></span></span></span></span></div>
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<span style="mso-bookmark: OLE_LINK13;"><span style="mso-bookmark: OLE_LINK14;"><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">Sophie’s rollercoaster journey started before birth… ultrasounds showed she was measuring on the small size during the second half of the pregnancy, which is referred to as “IUGR” (interuterine growth restricted).<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Liz was put on modified bed rest at week 36, and was induced at week 38.<span style="mso-spacerun: yes;"> </span>The thought by Liz’s doctors was that it would be better to induce and get Sophie growing outside the womb. <span style="mso-spacerun: yes;"> </span>The birth went really well and our amazing little peanut arrived at a whopping 4lbs 5oz (~3<sup>rd</sup> percentile) and 18.5 inches long at Northwestern Memorial Hospital here in Chicago.<span style="mso-spacerun: yes;"> </span>Sophie spent the first 5 days in the NICU due to low blood sugar levels and jaundice, but did really well through all of that and grew quickly.</span></span></span></span></span></div>
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<span style="mso-bookmark: OLE_LINK13;"><span style="mso-bookmark: OLE_LINK14;"><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">During her first 5 weeks after the NICU, it was discovered that Sophie had a number of health issues (including a tethered cord, brachial plexus injury, and hemangiomas) that required a multitude of visits with doctors and specialists across multiple disciplines.<span style="mso-spacerun: yes;"> </span>Each issue was unrelated to the other.<span style="mso-spacerun: yes;"> </span>During these multiple doctor’s visits and through our own observations, it became apparent that Sophie had less than normal <span style="mso-spacerun: yes;"> </span>movement of her arms, legs, head and neck… or in other words, she had very low muscle tone.<span style="mso-spacerun: yes;"> </span>As the days went by, this became our main concern, as it can be the symptom of many different disorders.<span style="mso-spacerun: yes;"> </span>We proactively started physical therapy to work on this, as well as occupational therapy for her arm injury.<span style="mso-spacerun: yes;"> </span>We thought we were starting to get her health issues under control, but still wanted to figure out the cause of her low muscle tone. </span></span></span></span></span></div>
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<span style="mso-bookmark: OLE_LINK13;"><span style="mso-bookmark: OLE_LINK14;"><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><u><span style="color: black; font-family: Calibri;"><b>The primary diagnosis – Spinal Muscular Atrophy:</b></span></u></span></span></span></span><br />
<span style="mso-bookmark: OLE_LINK13;"><span style="mso-bookmark: OLE_LINK14;"><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">During a regular checkup in week 6, we met with pediatrician Dr. Emily Cetner for the first time.<span style="mso-spacerun: yes;"> </span>Dr. Cetner shared our concern for Sophie’s low tone and immediately set us up with a pediatric neurologist.<span style="mso-spacerun: yes;"> </span>At the time we were very overwhelmed with Sophie’s other issues, and Dr. Cetner was the first person to really take charge and get Sophie the next level of care she needed.</span></span></span></span></span></div>
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<span style="mso-bookmark: OLE_LINK13;"><span style="mso-bookmark: OLE_LINK14;"><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">We met with the neurologist the following Tuesday morning, and after her evaluation of Sophie, she explained that Sophie likely had a motor neuron disorder… and hinted that it might be Spinal Muscular Atrophy (“SMA”).<span style="mso-spacerun: yes;"> </span>This feedback came as a huge shock to us, and as we immediately did more research as soon as we stepped out of the doctor’s office, we quickly began to realize the potential magnitude of the situation.<span style="mso-spacerun: yes;"> </span>The more we read, the more we discovered that Sophie presented many of the preliminary signs of SMA… and the more devastated we became. </span></span></span></span></span></div>
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<span style="mso-bookmark: OLE_LINK13;"><span style="mso-bookmark: OLE_LINK14;"><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">A series of blood and urine tests were completed right away, and the genetic test for SMA was taken a week later… however before we got any of the results, we were nearly certain within days that she indeed had SMA… <span style="mso-spacerun: yes;"> </span>and began to emotionally prepare for the dramatic impact it was going to have on all of our lives, most importantly Sophie’s.<span style="mso-spacerun: yes;"> </span>As we feared and expected, the SMA test came back positive a week later.</span></span></span></span></span><br />
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><u><span style="color: black; font-family: Calibri;"><b>What is SMA?</b></span></u></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">In summary, SMA is a genetic, motor neuron disease. <span style="mso-spacerun: yes;"> </span>It is a relatively common "rare disorder": approximately 1 in 6,000 babies born are affected, and about 1 in 40 people are genetic carriers (unknowingly usually).</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="font-family: Calibri;"><span style="color: black;">The muscles of patients with SMA weaken and waste away (atrophy) due to degeneration of motor neurons which are nerve cells in the spinal cord. Normally, these motor neurons relay signals, which they receive from the brain, to the muscle cells. When these neurons fail to function, the muscles deteriorate.<span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
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<span style="font-family: Calibri;"><span style="mso-bookmark: OLE_LINK11;"><span style="color: black; mso-bookmark: OLE_LINK12;">SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body) are often most severely affected.<span style="mso-spacerun: yes;"> </span>Feeding, swallowing, and respiratory actions (breathing and coughing) can be affected, leading to an increased tendency for pneumonia and other lung problems.<span style="mso-spacerun: yes;"> </span>Note that brain activity, sensation and the ability to feel are not affected, and it is often observed that patients with SMA are unusually bright and sociable.</span></span><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span lang="EN" style="font-family: "Arial", "sans-serif"; line-height: 115%; mso-ansi-language: EN;"></span></span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">There is no cure for SMA, and as a result of the muscle degeneration and subsequent issues, life expectancy for infants diagnosed with SMA (type 1, which as what Sophie has) can be as short as days/weeks... and without aggressive intervention, is typically less then 2 years.</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="font-family: Calibri;"><span style="color: black;">More information on SMA can be found on many websites… however we want to warn everyone that this is a really awful disorder… one of the worst things a parent could have to deal with… and there are many sad, depressing and scary stories on the web.<span style="mso-spacerun: yes;"> </span>We found the following site to contain a lot of helpful info to learn more about the disorder:<span style="mso-spacerun: yes;"> </span></span></span></span></span><a href="http://www.fsma.org/FSMACommunity/UnderstandingSMA/"><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: blue; font-family: Calibri;">http://www.fsma.org/FSMACommunity/UnderstandingSMA/</span></span></span></a><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><a href="http://www.blogger.com/" name="OLE_LINK10"></a><span style="mso-bookmark: OLE_LINK10;"><u><span style="color: black; font-family: Calibri;"><b>How are we dealing with this?</b></span></u></span></span></span><br />
<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">This has obviously been the hardest thing we’ve ever had to deal with in our lives… and honestly, some days and hours are better than others.<span style="mso-spacerun: yes;"> </span>We certainly went through the initial range of emotions (disbelief, fear, anger, jealousy, etc.) the first week before we even got the official diagnoses… but when it comes down to it, the only thing that matters is Sophie and what we can do to maximize the quality of her time with us.</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">The important thing to focus on right now is that Sophie isn’t experiencing any of the major effects of the disorder yet (and might not for a few months), and we are going to do everything in our power to make sure she is as happy and comfortable every single day.<span style="mso-spacerun: yes;"> </span>It’s easy to be jealous when we see families with healthy kids walking down the street, or mad when we see bad parents on the street or in the news… but none of that impacts Sophie.<span style="mso-spacerun: yes;"> </span>We strive to stay positive when we are with her (it’s amazing how she can sense our stress), and focus on all the things she enjoys such as:</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">- Walks in the neighborhood and park in the stroller</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">- Naps on the couch w/mom or </span></span></span><span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">dad’s chest</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">- Getting diaper changed</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">- Listening to mom and dad sing the MSU fight song</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">- Baths</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">- Getting licked by Bella, that big curly goldendoodle who still hasn’t quite figured her out</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><u><span style="color: black; font-family: Calibri;"><b>Treatment / Care:</b></span></u></span></span></div>
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<span style="color: black; font-family: Calibri;">As noted above, there is no treatment or cure for SMA, and the disease is degenerative (meaning it will continue to get worse over time).<span style="mso-spacerun: yes;"> </span>Care options vary, and parents must make difficult decisions regarding the path of care for their children.<span style="mso-spacerun: yes;"> Parents have different views on quality of life, and different views on the likelihood and future time for a treatment or cure for the disease.</span></span><br />
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<span style="color: black; font-family: Calibri;">As such, parents make a range of different care choices for their children... some parents choose to go to any measure to keep their child alive for as long as possible... while some parents focus less on maximizing the length of life and more so on maximizing the child's comfort every single day (aka a ‘palliative’ care approach).</span><br />
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<span style="color: black; font-family: Calibri;">Every parent does what they think is best for their child... and there is no one right decision to this awful situation. With that said, we ask that everyone respect our decisions regarding Sophie’s care.<span style="mso-spacerun: yes;"> </span>While we will continue to learn more and make many difficult decisions along the way, our focus is going to be on maximizing Sophie’s comfort level and quality of life.</span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><u><span style="color: black; font-family: Calibri;"><b>Sophie’s positive impact on others:</b></span></u></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">Sophie has already enriched our lives so much and will be a part of our family forever.<span style="mso-spacerun: yes;"> </span>Beyond her direct impact on us, we’re going to look into the ability to donate her organs to other young children… we see so many needy kids when we are at Children’s Memorial Hospital every week, and hope that her organs can save/improve the lives of a number of other kids.</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">In addition, given that SMA is a genetic disorder, we are not sure if we will have any other biological children in the future (more to be learned on this topic)… however even before we had Sophie, we strongly considered adopting one day after seeing so many amazing children during some of our international travels.<span style="mso-spacerun: yes;"> </span>After Sophie, we’ll likely adopt and give a child/children a chance for a better life that they might not have ever had. </span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><u><span style="color: black; font-family: Calibri;"><b>How can people help?</b></span></u></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">So many people have already asked how they can help, and we greatly appreciate everyone’s kind thoughts and offers. <span style="mso-spacerun: yes;"> </span>We’re sure our needs will change over time, but overall here are the primary things that come to mind:</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">1. Please don't feel like the need to "say the right thing"... this is a really difficult situation for everyone, and simple statements/messages letting us know that Sophie is in your thoughts are much appreciated.</span></span></span><br />
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">2. Please continue to update us with all of the good things going on in everyone’s lives… we will always think about Sophie every single day, and hearing stories about other people’s lives, families, trips, etc. won't make it any more difficult… if anything, it will be helpful to share in the stories and joys of everyone around us.</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">3. When spending time with us and Sophie, please share our focus on providing a positive environment around her… we certainly understand that emotions take over at times with this situation, but it is important to keep the focus on maximizing the happiness and comfort around her.</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">4. Please respect our treatment and care decisions in the future.<span style="mso-spacerun: yes;"> </span>As noted above, there is no one right solution for all families in this situation, and while we appreciate everyone’s concern and support for Sophie, we are going to do what we feel is best for her at every point along the way.</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">5. Please consider getting involved in SMA awareness activities… we’ll continue to learn more about these and share information about opportunities in the future.</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><u><span style="color: black; font-family: Calibri;"><b>Thank You’s:</b></span></u></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="font-family: Calibri;"><span style="color: black;">Sophie has met so many incredible people in her life already, and we’d like to acknowledge the many people that have helped and supported her along the way so far.<span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="font-family: Calibri;"><span style="color: black;">First, we’d like thank our family and friends… you’ve been such a great support system for Sophie and us!<span style="mso-spacerun: yes;"> </span>We are blessed to have you in our lives.<span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="font-family: Calibri;"><span style="color: black;">Second, thank you to our co-workers and managers who have been so flexible and supportive with our work/life balance through all of this.<span style="mso-spacerun: yes;"> </span></span></span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">Third, thank you to the many healthcare providers that have helped Sophie so far, including the various teams at Children’s Memorial Hospital (Colleen Glomgren, Physical Therapy; Leslie Rodman, Occupational Therapy; Dr. Anthony Mancini, Dermatology; Susan, Speech / Swallow Therapy; Tord Alden, Neurosurgery; and Dr. Shubhra Mukherjee, Physiatry), Advocate Medical Group (Dr. Farha Kahn, Neurology), the NICU staff at Northwestern Memorial, and last but not least, Dr. Emily Cetner from Town & Country Pediatrics (thanks for everything Dr. Cetner).</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">Love,</span></span></span></div>
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<span style="mso-bookmark: OLE_LINK11;"><span style="mso-bookmark: OLE_LINK12;"><span style="color: black; font-family: Calibri;">Liz, Mike, & Sophie</span></span></span></div>
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