tag:blogger.com,1999:blog-26164526661484030262024-03-04T21:44:17.753-08:00A Worthy JourneyJoin us on our journey as we navigate through life with spina bifida, food allergies, SIBO, EDS, IBS, mycotoxin illness, POTS, homeschooling, seizures, adoption, osteogenesis imperfecta, and a few more extras on our “list”. Our lives may look different than yours, or very much the same, but we hope to show you how truly amazing and worthy our journey is.
Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.comBlogger837125tag:blogger.com,1999:blog-2616452666148403026.post-83256312955237595812022-03-16T22:54:00.005-07:002022-03-16T22:54:52.363-07:00Our Harlem Globetrotters Experience <p><span style="font-family: courier; font-size: medium;">Earlier this month the girls performed in the Harlem Globetrotters halftime show. It’s the second time they’ve been able to perform in a show and it’s always such a fun and unique experience. They practiced like crazy and were so excited to have the opportunity to go out. They looked so beautiful and grown up and did such a great job. I’m a proud mom for sure. </span></p><p><span style="font-family: courier; font-size: medium;"><br /></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEj76gg_E0-SL55AuKzHKFB1p-v3LUFXxqD3Pvsw4N_W3pmgWXHSulemtlc_0-D8AUUnb9ON1FWXBv0KU6qDFnYtdC_IyH6GxjpaC-2Gw7DUiIVnRrEr0WsiFP2t-onICct4Xwjzxq78uZ-l7n3QOPqwfYV5u73i88Zvnfp_TrpwU6Ap_Od08OrjOkg=s4032" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEj76gg_E0-SL55AuKzHKFB1p-v3LUFXxqD3Pvsw4N_W3pmgWXHSulemtlc_0-D8AUUnb9ON1FWXBv0KU6qDFnYtdC_IyH6GxjpaC-2Gw7DUiIVnRrEr0WsiFP2t-onICct4Xwjzxq78uZ-l7n3QOPqwfYV5u73i88Zvnfp_TrpwU6Ap_Od08OrjOkg=s320" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEinN7OpbSfha3wTAhXrzwTE0vwu_znkNNbEd3cMD3p65D1veN0fn7zuVowLZn_rF3e37s7b7r7BRLBry7jP5sl8vGeWfz4l8VCme4XXfoL8RAS0XKf3vKJV-Zx-DJ8ddlQVLCbNw0eBBVT9CQK3iJU5uynmSA9id--n2g8epCzNyOVNRKDk9DiiEDM=s4032" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEinN7OpbSfha3wTAhXrzwTE0vwu_znkNNbEd3cMD3p65D1veN0fn7zuVowLZn_rF3e37s7b7r7BRLBry7jP5sl8vGeWfz4l8VCme4XXfoL8RAS0XKf3vKJV-Zx-DJ8ddlQVLCbNw0eBBVT9CQK3iJU5uynmSA9id--n2g8epCzNyOVNRKDk9DiiEDM=s320" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhre43h2XiHp_dp_HnkYvYeyjD4b3sBd3GzVzaxj-yHZDS4b7sOA-NXwnB2lu9v3291vpyz8fob7vnGRsOYCGHwVgpcQ1Ms4hEN2ubKL2RVxnkwLlzJ46vKFzYX6PPD-bJFY2i30OAyCBw9QRm3d8cN-GIgdaRMKUCE43F0HgwL09neas72hr1xQS4=s4032" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEhre43h2XiHp_dp_HnkYvYeyjD4b3sBd3GzVzaxj-yHZDS4b7sOA-NXwnB2lu9v3291vpyz8fob7vnGRsOYCGHwVgpcQ1Ms4hEN2ubKL2RVxnkwLlzJ46vKFzYX6PPD-bJFY2i30OAyCBw9QRm3d8cN-GIgdaRMKUCE43F0HgwL09neas72hr1xQS4=s320" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiBwLJalicfM_Q17SZ633ZNf0CIGARjL6e7lgQwWHqSA480tU-twh7jhbcZYKbB2zB84uusE3OfaALexaWskyXAUdkaXnYV38bOpcbcH2EYVjwdiuxuCJ-tX-VE_v6OvKE9oAnDGm32N49wSlrhlB95DzG133WrNiB5Lj_651qLs1ZdVFIE7GlIzlE=s4032" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEiBwLJalicfM_Q17SZ633ZNf0CIGARjL6e7lgQwWHqSA480tU-twh7jhbcZYKbB2zB84uusE3OfaALexaWskyXAUdkaXnYV38bOpcbcH2EYVjwdiuxuCJ-tX-VE_v6OvKE9oAnDGm32N49wSlrhlB95DzG133WrNiB5Lj_651qLs1ZdVFIE7GlIzlE=s320" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEioX631FHiDupXzBPp7a-30vuIB_BwAyf3MJZBme4nM380STjRdkStpf3a77fit0eLbVKKLO_dTv2Fj7txFl7-WUbLtbLn51MVZLwU0cTfcMnBTzC7Bfd3LVtDKogSP7MM5npYbdEDWt44WH5_ZWcuLMHGP-3IRy5ADb4grf_YlYMiPotLe6zICFUo=s4032" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEioX631FHiDupXzBPp7a-30vuIB_BwAyf3MJZBme4nM380STjRdkStpf3a77fit0eLbVKKLO_dTv2Fj7txFl7-WUbLtbLn51MVZLwU0cTfcMnBTzC7Bfd3LVtDKogSP7MM5npYbdEDWt44WH5_ZWcuLMHGP-3IRy5ADb4grf_YlYMiPotLe6zICFUo=s320" width="320" /></a></div><br /><span style="font-family: courier; font-size: medium;"><br /></span><p></p>Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-8965343069979430822022-01-05T15:11:00.002-08:002022-01-05T15:11:32.021-08:00Merry Christmas from Our Family <p><span style="font-size: medium;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /><div style="text-align: justify;"><span style="text-align: left;">Between dance and getting sick, we were pretty worn out. We decided that we’d have a quiet and peaceful Christmas and did just that. In fact, we kept the entire week after Christmas quiet too. We slept in, took time off homeschooling, and spent our time at home. It was pretty perfect. We also celebrated David’s birthday and Deena’s 6th adoption day, so we had plenty of fun and things to keep us busy in there. We hope you all had a peaceful a Christmas too.</span></div></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><span style="text-align: left;"><br /></span></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjgbKZF4MtQ6Cf8NzBnrOef62D6xPmtei8PgpsawlJi808NqYhpOmHvrj43VAA4QNa0QK7erKimawd1YihYk6HCiJlWVorHDNYsMN_CTa8XUhq7b4m7xegw7z3-Xmo6t9zClK6fZ8hPFv6GBONTVLc7BjahrVvqzXERmExiXz-Sz9VJslpxT59fEO4=s4032" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEjgbKZF4MtQ6Cf8NzBnrOef62D6xPmtei8PgpsawlJi808NqYhpOmHvrj43VAA4QNa0QK7erKimawd1YihYk6HCiJlWVorHDNYsMN_CTa8XUhq7b4m7xegw7z3-Xmo6t9zClK6fZ8hPFv6GBONTVLc7BjahrVvqzXERmExiXz-Sz9VJslpxT59fEO4=s320" width="240" /></a></span></div><span style="font-size: medium;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEh0-awyK1t0U2jAHcPDCJswxS0FbEWsZD_o_PhaezyOA4lIV6f_UtIf3Wgmi3uK1mvyvEIOCU71X069VPMTbWl7XI7F82hzbZhXJJ0tfKzEppx5GUKnPOvNedL76NnHdczFafL9FhRy3nJk8NNy9VqEs2zYDepuYOFAgXiChgi_yc9L5FvjOtgRYxo=s4032" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEh0-awyK1t0U2jAHcPDCJswxS0FbEWsZD_o_PhaezyOA4lIV6f_UtIf3Wgmi3uK1mvyvEIOCU71X069VPMTbWl7XI7F82hzbZhXJJ0tfKzEppx5GUKnPOvNedL76NnHdczFafL9FhRy3nJk8NNy9VqEs2zYDepuYOFAgXiChgi_yc9L5FvjOtgRYxo=s320" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhAo3_W0BXaOOcRiOY2EMlD3If7PO-rBcvY5Su0wb2okrcXPXAfWWzp9QF4IkgzncQU--YZYPJGYn8N4lBnsSKBtyMoYGuKfqDU7sS6kQvmINm45ftlRgB0zzc6xcyJc6_6IAMtCBzooWDU6Twnk6s3EZZnpuxPilpsEz4kF6nJeFm0KJ_32bRADi4=s3329" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2483" data-original-width="3329" height="239" src="https://blogger.googleusercontent.com/img/a/AVvXsEhAo3_W0BXaOOcRiOY2EMlD3If7PO-rBcvY5Su0wb2okrcXPXAfWWzp9QF4IkgzncQU--YZYPJGYn8N4lBnsSKBtyMoYGuKfqDU7sS6kQvmINm45ftlRgB0zzc6xcyJc6_6IAMtCBzooWDU6Twnk6s3EZZnpuxPilpsEz4kF6nJeFm0KJ_32bRADi4=s320" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiA3HCAVa87vG8all5btW1hUqqnPavukk7hLur4JHB3ThHPz5BulSzMrXg5QjN2To52e5DxIaZFpx5aWVelgYtQm9iKzWDH51aR746vSAYOjnLFybuJ74kqtkyFqsnzzv3LZkeKRE5bb1Gf8bQYfN4IHnfaHeNaRFbWbn4IgnGsaNFhF-LpqD-_G0k=s4032" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEiA3HCAVa87vG8all5btW1hUqqnPavukk7hLur4JHB3ThHPz5BulSzMrXg5QjN2To52e5DxIaZFpx5aWVelgYtQm9iKzWDH51aR746vSAYOjnLFybuJ74kqtkyFqsnzzv3LZkeKRE5bb1Gf8bQYfN4IHnfaHeNaRFbWbn4IgnGsaNFhF-LpqD-_G0k=s320" width="240" /></a></div><br /><div class="separator" style="clear: both; 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text-align: justify;"><span style="font-family: verdana; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><br /></div><br /> This past weekend my girls danced in The Nutcracker with Dancing in the Streets. They looked so beautiful and did so well. They were in multiple dances and even helped create some of the choreography. Last year’s performance wasn’t able to happen due to covid and the girls missed it so much. They were beyond excited to hear they’d be able to perform this year. Dance means so much to them. It challenges them to get out of their comfort zone, it challenges them physically, it’s is a great way for them to exercise, and they love expressing themselves and helping to teach others about their abilities through something they are all passionate about- dance. Finding a dance studio that values this experience as much as we do can be such a huge challenge. One that we've experienced ourselves. They always feel at home at Dancing in the Streets, though, and are always welcomed there. If you are looking for a wonderful, dedicated organization to support, they’re it! You can donate by going to </span><a href="https://www.ditsaz.org/" style="font-family: verdana; text-align: left;">https://www.ditsaz.org/</a><span style="font-family: verdana; text-align: left;">. Here are some pictures from this weekend. I think you can see their joy flooding through. </span></div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><p></p></blockquote><p><span style="font-family: verdana;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjTII3cXABow6lHR0P9VCWCFEBvxqEEDloX4I-veJUpmaDKsMOI135qR7FjVZbpatA1DJ1bwtbUTeIpyx2hniQxxU0OIYpUGIenS4yyP0irnH-wCdX-aHn3wVNmxuYDTJYWyhW7hKXPiZWAa0dVPsR2JNnDbZ0KlESDAjHULkanyCUqSadx89-heso=s1641" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1641" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEjTII3cXABow6lHR0P9VCWCFEBvxqEEDloX4I-veJUpmaDKsMOI135qR7FjVZbpatA1DJ1bwtbUTeIpyx2hniQxxU0OIYpUGIenS4yyP0irnH-wCdX-aHn3wVNmxuYDTJYWyhW7hKXPiZWAa0dVPsR2JNnDbZ0KlESDAjHULkanyCUqSadx89-heso=s320" width="281" /></a></span></div><span style="font-family: verdana;"><br /><div class="separator" style="clear: both; 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text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiqJu8TYGhBgLmBssuQMi5zg-Bnn7a-TbxUEw8mAU8p3mHm1KgRBmR1a0jvkrt7gJ6G7DE1RdO4Aui79XIwfOJuLJYLdQpf7CHCPP7qAJHVGlf9KuRdcqWPls7_vGTccQYjVp7TmwFTZujNBJ6LTgqVVAAYQgiM2ZtOBxtFsN1-SgM8MAvcAZX-MBA=s1642" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1642" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEiqJu8TYGhBgLmBssuQMi5zg-Bnn7a-TbxUEw8mAU8p3mHm1KgRBmR1a0jvkrt7gJ6G7DE1RdO4Aui79XIwfOJuLJYLdQpf7CHCPP7qAJHVGlf9KuRdcqWPls7_vGTccQYjVp7TmwFTZujNBJ6LTgqVVAAYQgiM2ZtOBxtFsN1-SgM8MAvcAZX-MBA=s320" width="281" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhT8zKqWykhMCOC3r25aDaicfy7YtRH7qf8aRbtAJ7z5mvpypBooVx6hsg9HtpWyi148mbkLe2vyt5NNIIv4iFoJZZy8v9RZhgJm_UdANabibJ2SmnCwSX3IW-PO6PBhd-R8BaE2-qzQjTrdb5gfGPdMCbTehj6AkmkBFyxcWHlofEwpVVVPADKUYE=s1642" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1642" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEhT8zKqWykhMCOC3r25aDaicfy7YtRH7qf8aRbtAJ7z5mvpypBooVx6hsg9HtpWyi148mbkLe2vyt5NNIIv4iFoJZZy8v9RZhgJm_UdANabibJ2SmnCwSX3IW-PO6PBhd-R8BaE2-qzQjTrdb5gfGPdMCbTehj6AkmkBFyxcWHlofEwpVVVPADKUYE=s320" width="281" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /></span><p></p><p><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzXoMWhT049-1EK-K6ZX86diaoPEe7oIAOLr-DsTiQPeX2n_sQxvNYmKtx4FytLjg9HwXKrdImvBOpgWeJFNA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></p>Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-23866310709759602562021-11-20T14:36:00.004-08:002021-11-20T14:37:02.170-08:00Our Day with Campbell’s Crew Cares <p><span style="font-family: arial; font-size: medium;">Our friend Campbell, who founded Campbell’s Crew Cares, had his mom contact me and see if they could take my kids shopping and let them pick out all their own clothes. I have never actually taken them all shopping to pick out their own outfits and I knew they would have SO much fun with it. We coordinated a day when we had to be in Phoenix for a neurosurgery appointment and met them at Walmart. They had volunteers there waiting to take the kids around and let them pick all their own clothes. It was so fun to see what each kid picked and watch their individual styles come through. It was such a blessing to have outfits provided for each kid too. We go through leggings in our house like crazy! Thank you Campbell’s Crew Cares for taking such good care of the kids.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFVojl196gabytgyB4c7ssZku2xgk5McbupXY53YUS1d1_kl25Tr7uWpvs0rI7uSj64ci_7kGxpNGDzV1mtKV5l3D8mTTS9KWk29ork1_jV785X7R-DK_Xpw29Txvu0gjkBKNxRUKWe_0/s2048/4E1EB387-17DA-46AF-92C2-3732B56E2CDC.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFVojl196gabytgyB4c7ssZku2xgk5McbupXY53YUS1d1_kl25Tr7uWpvs0rI7uSj64ci_7kGxpNGDzV1mtKV5l3D8mTTS9KWk29ork1_jV785X7R-DK_Xpw29Txvu0gjkBKNxRUKWe_0/s320/4E1EB387-17DA-46AF-92C2-3732B56E2CDC.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaDrV8CG4Ur24lhg22eO7pxmRABqCX8BN-yxKYDhhU5x_X0Iu2yxFiNZsXnuHDn4pE3tsma5bgJVNYYI4rracAaDUYZ4nHtQzPprfZCBO5zg_-0_z5w9LB6n6qRBISEXENT35uQkNfYL8/s2048/136D0D8F-9A28-4797-8F28-D746172A3896.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaDrV8CG4Ur24lhg22eO7pxmRABqCX8BN-yxKYDhhU5x_X0Iu2yxFiNZsXnuHDn4pE3tsma5bgJVNYYI4rracAaDUYZ4nHtQzPprfZCBO5zg_-0_z5w9LB6n6qRBISEXENT35uQkNfYL8/s320/136D0D8F-9A28-4797-8F28-D746172A3896.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZPgFoM8By9YzfjYqH-4KAtKSN-ZLVXoCmt6Uo5Uy-_LU_ZJ_eU__TB8EdfEE_JkOYtJUbFANm5G3M-9gL39vPC3HH2Llp8L6bea7Acb4wp-lfTkfAv5FTm4uFQyXyrVD1r2gy7Vwr5NE/s2048/DEB8B120-A931-4ECB-8DAE-F19988F8F30D.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZPgFoM8By9YzfjYqH-4KAtKSN-ZLVXoCmt6Uo5Uy-_LU_ZJ_eU__TB8EdfEE_JkOYtJUbFANm5G3M-9gL39vPC3HH2Llp8L6bea7Acb4wp-lfTkfAv5FTm4uFQyXyrVD1r2gy7Vwr5NE/s320/DEB8B120-A931-4ECB-8DAE-F19988F8F30D.jpeg" width="240" /></a></div><br /><p></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p>Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-35470007131128829382021-11-20T14:17:00.002-08:002021-11-20T14:17:56.936-08:00Our Trip to the Batcave <p> <span style="font-family: arial;">We recently had the opportunity to visit the Batcave with the Colton Foundation. It was such a fun experience that I feel it deserves it’s own post. Our friend Campbell (he runs Campbell’s Crew Cares) nominated the girls to participate and joined us there. The kids even got to ride in the Batmobile and Batman’s motorcycle. The kids had a blast and are still talking all about it. </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcLn_MrzQwA_q0LZGJWL_T1_i-QgwsfJnrvQM8Qcw_YU881bB-xQazHO1yabJe4Zw29-7sRq6r_7BbVDSU92rE8swb_NDH8agpnbxPOJillIUGiZ_Ieb2js9WfaxRePH9uu8ED_roqXa8/s2048/0DA50C31-D279-4428-9CE3-E912949C49FA.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcLn_MrzQwA_q0LZGJWL_T1_i-QgwsfJnrvQM8Qcw_YU881bB-xQazHO1yabJe4Zw29-7sRq6r_7BbVDSU92rE8swb_NDH8agpnbxPOJillIUGiZ_Ieb2js9WfaxRePH9uu8ED_roqXa8/s320/0DA50C31-D279-4428-9CE3-E912949C49FA.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd-5JAhCCnTNaG4KYuj7H7yICwycCFb1CPHLz1H0zD1HA7SE0Ye0GLAF3jmFhAodAjoOetBlG6TJqRdynVgb05Gu6B8Q9CLSKYIkPUOkzKvrdC1EpGtDmpljlvxQXW1Hla8TkAuyLyQTs/s2048/2A8C9AC7-AF06-44C6-B97D-184093940A3C.jpeg" imageanchor="1" style="margin-left: 1em; 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text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz32Y7PTmEFzuIn7FUl0nJ-9bal_u5hc6N1m5VP28cz5KdhUFE2vDoxxQmO5LIm_HnnqKi4Hwdymx1nD3DPwA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dw-kcjWdAhMXDDPvQu8Tn4SdULwzp0QmA64JhTGdrMry_okxKHiHp1OIiPyec6YWJayGCaJoQ-ylWa4VYs0_w' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /><span style="font-family: arial;"><br /></span><p></p>Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-13778354030902143752021-11-20T13:58:00.003-08:002021-11-20T14:19:38.124-08:00We are Alive and Well!<p><span style="font-family: verdana;"></span></p><p style="text-align: left;"><span style="font-family: verdana;"><span style="text-align: left;">Oh man, I haven’t been on here in so long!!! We’ve been so busy living our lives, time just got away from me. Life has been full of lots of good things, but some days it feels like we are constantly on the move. </span></span></p><p></p><p><span style="font-family: verdana;">I know I shared before that I’ve had some of my own health issues. Because of that, I’ve had to add specialists and appointments for myself. It’s not my favorite thing, I won’t lie. Genetics, Endocrynologists, cardiology, GI, neurology, my naturopathic doctor, and my mold specialist. I’ve had a lot of testing too. I’ve gotten some official diagnoses myself, but no real answers. It’s a frustrating process, but I’m trying to focus on living life to the fullest and finding joy throughout it all. Right now they have me on the carnivore diet. The hope is that giving my gut a break will give it time to repair, and in return, will help me keep my SIBO from reoccurring. We still haven’t been able to figure out why it won’t stay away. The current guess is because my IgG count is low in a few areas. The next specialist I’ll need to see is an immunologist. </span></p><p><span style="font-family: verdana;">The kids are doing well and keeping busy. We are officially back in co-op and are still homeschooling. Being original homeschoolers throughout the whole pandemic was such a blessing. We were able to keep the kid’s lives pretty “normal” throughout everything, and I’m so thankful for that. After some time off when everything was closed down, Conner has been back in parkour and is loving being a crazy boy and jumping off things. The girls are back in dance and have a performance coming up in December. They are in three dances and are so proud and excited. </span></p><p><span style="font-family: verdana;">Madi tuned 13 on the 11th, so we officially have only teens in the house. It’s so crazy to think about how grown up they all are now. Kyla, our “year bonus kid” had a baby last fall, though, so it’s been really fun having a baby around again. Gracie was diagnosed with NEHI, which is an <span style="-webkit-text-size-adjust: auto; background-color: white; caret-color: rgb(88, 89, 91);">interstitial lung disease. Kyla is the best momma though and makes sure she always gets the best care. She’s growing and thriving and is such a happy and fun baby. </span>We see Kyla and Gracie multiple times a week and love it. </span></p><p><span style="font-family: verdana;">The girls are doing great in therapy and have made big strides. We were finally able to find an in-home physical therapist for the girls, which has been awesome. Ramya has new AFOs on the way, Madi has a new wheelchair on the way, and Deena’s been doing great with walking with just one arm crutch and SMOs. They never cease to amaze me.</span></p><p><span style="font-family: verdana;">I’ll post some recent photos of the kids and our recent vacation to California. You won’t even believe how big they are getting. They are such great kids and make life so fun</span>.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMBw10GTDRG18T6iNhkBfItBcH5hVbLBLEUbZA69OHUz0bXG3kPhOVffFKdH18R26Yl13bmqhwm7Gxuyh35SKccbDCm4mXoTBaTJkdmkHphuuLrk-WwiuI0RJgGM1-bdmmsiVC6zzFfRs/s2048/0A788007-57FD-4608-899B-195F5E774967.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMBw10GTDRG18T6iNhkBfItBcH5hVbLBLEUbZA69OHUz0bXG3kPhOVffFKdH18R26Yl13bmqhwm7Gxuyh35SKccbDCm4mXoTBaTJkdmkHphuuLrk-WwiuI0RJgGM1-bdmmsiVC6zzFfRs/s320/0A788007-57FD-4608-899B-195F5E774967.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA5BqqwZXJoSxTac5STsKEE10SLaB3hXgaYbDEK_c7jnjj7VhYjM47DeX0Q6_-Uk3lHGjrPVd4Jvx7XZzg8Dlymkglz8TU-dWMakOdfLePPFERl5PREMU9FLwNT2YM6ORbUZpxVZmoXsA/s2048/0BDC4B34-D4B5-41D8-8E63-8C633961AB26.jpeg" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDe18XMvyCiecgWLFaYBlrMYQShcDBt89soGUYgwIFg14zgcEAH7hp97d70LClm4eI2JVbQoiKYJfXdhL4UB4vSRqPZvPLzpubE68GtWXUQ42tFsPxWivWQ-Zar0_aWR-z0AiNdL4t4XM/s320/FA3E7788-B887-429B-95BA-A45EC2FEB6B2.jpeg" width="320" /></a></div><br /><p><br /></p><p><br /></p>Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-65406261319272252402020-04-22T01:24:00.001-07:002020-04-22T01:27:07.669-07:00Our Disney Cruise: So Much Bad and So Much Good<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "verdana" , sans-serif;">As usual, I'm behind on my blogging. At least I'm consistent, right? I've been wanting to post this for a while, and <b>I think it's an important read for anyone with a disability who is planning to go on a Disney cruise</b>. </span></div>
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<span style="font-family: "verdana" , sans-serif;">In October we went on a trip we have been saving years for; our very first Disney cruise. My parents decided to come with us and the kids were ecstatic. It's all they could talk about. I showed them videos onboard to help them plan, and we started counting down the days. I talked with someone at Disney at length prior to booking and thought I knew what to expect and what would be the best way for us to travel. I explained our unique family situation, medical needs, and the girl's special needs in order to gain a good understanding of what our trip would look like. We decided to leave from San Diego so that we could drive. This also allowed us to coordinate this trip with our annual trip to California using our timeshare. We had also decided to go ahead and purchase their extra insurance so that we could be flighted off the ship if necessary. It was quite a bit more, but having one with hard-to-control epilepsy, and another with very fragile bones, meant it was necessary "just in case". I always say you should prepare for the worst and pray for the best, which is what we did. </span></div>
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<span style="font-family: "verdana" , sans-serif;">They had informed me in advance that the port activities wouldn't be accessible. In fact there were NO accessible port activities. Not one. I was also told the tender boat itself would also not be the most accessible. Because of that, we chose to do a 5 day, 4 night trip so that we could plan on staying on the boat without running out of activities to do. </span></div>
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<span style="font-family: "verdana" , sans-serif;">We let them know we would need an accessible room, and apparently that means you are very limited in what you can chose. You basically have to pay for a higher-priced room with a balcony, as those are the only rooms large enough to be accessible. Because of our family size, we actually needed two rooms. The trip was starting to add up fast. The good news is that they had two accessible rooms next door to each other, so we were able to stay close together. That was very helpful since we did have to split up and have one adult and two children per room. The rooms themselves were great. There are wave phones for communication on board, the beds were comfortable, the bunk bed gets put away so you have more room during the day to move around, and the bathrooms were more than sufficiently sized and were also accessible. We were very comfortable in our rooms.</span></div>
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<span style="font-family: "verdana" , sans-serif;">I'm going to go ahead and create topics now so I can speak to each area. Hopefully if you are planning on a cruise, this will help you with expectations. I hope this helps someone out there.</span></div>
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<li style="text-align: left;"><span style="font-family: "verdana" , sans-serif;"><b>Food:</b> The food onboard the ship was excellent. There were so many options. There was a good mix of "fast" foods by the pool, and these were pretty good at accommodating food allergies. If you have major issues with cross-contamination, these stops likely wouldn't work for you. For our kids, though, they were fine. The only issue here was that anything "special" you needed took a VERY long time. There's nothing fast about it unless you can eat exactly as is. There was also a buffet that was open much of the day. There was a vast array of foods available, and you could also talk to a chef to request something diet-friendly that accommodated your allergies. Again, expect to wait, sometimes quite a long time, to get what you need, but the food was really good and they had numerous options. The main dining was amazing. They knew your allergies before you arrived and the wait staff really went out of their way to accommodate your needs and make sure that you'd have dinner and dessert available. I was very nervous about feeding myself because my diet is so extremely limited right now and even a different seasoning can set me in to hours of stomach pains. Thankfully they were very good at figuring out what I could eat, and I was well fed the entire time. The wait staff was also great at entertaining the kids and made our time there enjoyable. The dinner shows were fun and engaging. It was something all my kids looked forward to, as did the adults.</span></li>
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<li style="text-align: left;"><span style="font-family: "verdana" , sans-serif;"><b>Pool:</b> I'm going to go ahead and get this one out of the way because it was probably the most disappointing part of our trip. Before going on the cruise I got this letter in the mail. You'll notice it discusses the availability of pool lifts, but does not get in to much more detail than that.</span></li>
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<span style="font-family: "verdana" , sans-serif; text-align: left;">Once we boarded and got to our room, we were greeted</span><span style="font-family: "verdana" , sans-serif; text-align: left;"> with this notice.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtM2R5ltY0Idnx4z_8ZBa_U1yjJdhEzIUYzEZxCBKHL8Gika2QFG08jTioli1v0Aia9Xx3Oh_6QvW0PVGOPaezUg2XDwpndcZRKgfOPEADRXgciZ08ApOeYy3ep1j8XZU2N_SsepqPBjw/s1600/IMG_8836+%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtM2R5ltY0Idnx4z_8ZBa_U1yjJdhEzIUYzEZxCBKHL8Gika2QFG08jTioli1v0Aia9Xx3Oh_6QvW0PVGOPaezUg2XDwpndcZRKgfOPEADRXgciZ08ApOeYy3ep1j8XZU2N_SsepqPBjw/s320/IMG_8836+%25282%2529.jpg" width="320" /></a></div>
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<span style="font-family: "verdana" , sans-serif; text-align: left;">The girls are not urinary continent, however, they have a timed bathroom regiment that keeps them clean with very minimal accidents. As an extra precaution, I brought swim diapers to go under their bathing suits. I, wrongly, thought this would be sufficient. The kids asked non-stop about when they could swim, so we finally planned a time. I got them ready and we went together to scope out the pools. Because of the high walls and the such to allow for moving water, we decided to use the smaller pool for younger children. This would allow the girls to get in and out easier, gave them a good amount of steps to use, and let them safely swim and float around. We couldn't use the lift, but were able to safely get them to the pool. They were having a blast, and loved every second. It didn't take long, though, for Ramya's tankini to separate and for someone to spot her undergarments. I was taken aside and asked about them. Now, before I explain the rest, please keep in mind they were swimming with YOUNG CHILDREN, many that were not yet potty trained. There were some slightly older children as well, but most were young. </span><span style="text-align: left;"><span style="font-family: "verdana" , sans-serif;">Because accidents there were frequent and children were not allowed swim diapers, they frequently and routinely drain the entire pool to clean it and put in fresh water. I explained it was a precautionary measure and that they would not have an accident. I was told they could continue swimming. Not even 5 minutes later, someone higher up came to talk to me. During this time we also had to remove the girls as they were cleaning the pool. After much back and forth and very little care about discrimination, I asked for the higher-up. I was told while I waited the girls were allowed to use the splash pad... for children two and under. Sigh. They were having so much fun and didn't want to use the splash pad, they wanted to be in the pool. I explained to them we needed to take a break and we carted them over to the splash pad. Finally someone else came to speak to me. There was a lot of discussion and basically I was told on International water there is different rules so they were allowed to not let them swim. Fantastic. They would, however, oddly enough let them swim without any undergarments, but I didn't want the girls to be embarrassed in the off chance something happened. It would have been great to know that BEFORE we got there, so that I could have given the kids realistic expectations. Of course within my extensive discussions with Disney prior to booking, and with the letter we were given prior, there was no mention of this "policy". They finally agreed that they could swim for a bit, but at that point in time we'd been waiting and talking for quite some time and it was time to get out anyway. It really upset them. Many disabilities and injuries come along with some extra bathroom "issues" that are just part of the package. This is pretty common knowledge. They knew about my girl's disabilities and did not bother to mention it to me, even when I asked about the pool. They should disclose these rules before booking your cruise, period. I hate having to go "momma bear" to get my girls accommodated, though I will any time necessary, and this ruined a lot of the day for me, and for them. Don't forget, you are still expected to pay the same price as everyone else, even though you cannot participate in many different excursions and amenities on the ship.</span></span></div>
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<span style="text-align: left;"><span style="font-family: "verdana" , sans-serif;">(Right before we were questioned)</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_6AjdpEe76w36zwM4zi4bArihTiPpEfYGszeF9Epjip-GboRxGzFkVyfMwZbK5T8ZsqZ0G_LzdVCibX74JY7D1G9W5FcxJOX83JSxVWYIWPcZstjX4NRHNLeCNu_BTpSyhTT1zVdZPjo/s1600/IMG_8652.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_6AjdpEe76w36zwM4zi4bArihTiPpEfYGszeF9Epjip-GboRxGzFkVyfMwZbK5T8ZsqZ0G_LzdVCibX74JY7D1G9W5FcxJOX83JSxVWYIWPcZstjX4NRHNLeCNu_BTpSyhTT1zVdZPjo/s320/IMG_8652.HEIC" width="320" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">(The "splash pad", which also isn't wheelchair accessible I should add due to very narrow doorways and tall thresholds in and out)</span></div>
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<li style="text-align: left;"><span style="font-family: "verdana" , sans-serif;"><b>Kid's Club:</b> I'm going to go ahead and get this one out of the way too. This was another huge disappointment. They had Kid's clubs based on age, from infant on up. They have tons of activities (like costume parties, movie nights, games, etc...) and fun things they host in the Kid's clubs. What they didn't tell us before we got there, though, was that children have to be able to take themselves to the bathroom in order to be dropped off. Again, I was told about the kids club BEFORE I booked our trip, and that was never mentioned. That works for one of my girls and Conner, but doesn't work for the other two. I would never expect someone else to take my child to the bathroom, nor would I let them. I, however, would of course make sure they were always taken care of in that area. Since they are on an efficient timed bathroom schedule, I was not worried, but again, those were the rules. Conner loved his club and spent a ton of time there. It gave him freedom to have some independence and we knew where he was at all times. He made quite a few friends and loved the scavenger hunts and activities they offered. They called to ask why I hadn't sent the girls (a little odd to me because they really, really, REALLY pushed you to put your kids in clubs, but that's a different story. I think they really wanted the adults out spending money on alcohol 😉). I told them it was because they were not fully independent in the bathroom. They apologized but reiterated that was their rule. Their solution was to go during an open house, when families could attend together. We thought that seemed like a fun idea so we took them during the next open house. What we didn't know, though, was that there were no guided activities during that time, so basically they had out ipads and video games, as well as a few coloring pages. The girls were slightly entertained for a bit, but I didn't spend thousands of dollars for them to play on ipads. I had expected them to have some fun activities for them. Unfortunately they didn't. The girls lost interest fast and we didn't go back. Again, you don't get any sort of discount for not being able to attend, even though the vast majority of their planned activities are there. You are just expected to miss out.</span></li>
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<span style="font-family: "verdana" , sans-serif;">(We were the only family using the open time)</span></div>
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<li style="text-align: left;"><span style="font-family: "verdana" , sans-serif;"><b>Shows:</b> The shows on board the ship were amazing. They were very high quality, we were given good, accessible seats, and the girls especially loved every single one. They also had a magician one night and all of my kids loved the show. They had deck shows as well. Those were very crowded and hard to maneuver in, but they did help us find good, safe spots where the girls could see and enjoy the show. This was by far one of the highlights of our trip. They loved the music, the dancing, the performances, and everything about them. They were loud, so my noise-sensitive children did cover their ears often, but had I known to plan, some ear canceling headphones would have helped a ton. They also had fireworks one night and that was really magical for the kids. This was the biggest advantage of the Disney cruise for us.</span></li>
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<li style="text-align: left;"><span style="font-family: "verdana" , sans-serif;"><b>Onboard Activities: </b>Again, much of what they offer on the ship is the pool and water slide, kids club with ongoing activities, and the off boat excursions. We were unable to participate in any of that though paid the same as everyone else. That was quite disappointing. They did offer other activities, though, such as character meet-and-greets, crafts, and drawing courses during the day. They also had ongoing movies in the theater, as well as pool-side movies and trivia. We participated in many of these activities and the kids enjoyed themselves. Though we had less to chose from, we made the best of it and the kids were able to find multiple things to keep them happy and busy. They had a costume night and pirate night and those were a ton of fun. Most people onboard participated and dressed up. They had allergen-friendly candy in addition to regular candy they gave out. It was a bit crowded and hard to maneuver, but we had extra hands with us so it worked out just fine. It was really fun to see everyone's costumes. The entire boat was also decorated for Halloween, so it was a really neat experience.</span></li>
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<li style="text-align: left;"><span style="font-family: "verdana" , sans-serif;"><b>Adult Area: </b>They had a nice adult-only pool, as well as a few bars and clubs meant only for adults. There seemed to be many people utilizing them. We didn't do most of it since we weren't able to put the children in care, however, my parents did watch the kiddos one evening so we could head out by ourselves. We had a drink and played shuffleboard, then just walked around and talked. It was a nice time together. Luckily we are both pretty happy just to have a few minutes alone, and that was enough for us.</span></li>
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<li style="text-align: left;"><span style="font-family: "verdana" , sans-serif;"><b>General Accessibility: </b>Overall, the ship was accessible, though there were many inconveniences. One issue was the carpeting. It was very, very hard for the girls to wheel themselves on it (and trust me, they are very strong). They can wheel themselves on most carpeting just fine, but this was a very sticky, unusually hard to wheel on carpet. Luckily we had extra hands and it was fine, but an adult chair user may have a hard time wheeling independently over the carpeted areas. Thankfully only the hallways to the rooms were carpeted. There were elevators in the front, middle, and back of the boat. Unfortunately no one wanted to use the stairs and it was always very crowded. People often cut in front of us and took elevators we were waiting for. The elevators were small so we had to split up. Again, luckily we had my parents so we were able to do this. We could fit two chairs in a few of the elevators, but often only one. Sometimes we waited 20 minutes to get us all up or down a level. It would be really nice if accessible rooms had special key that operated a different set of elevators. I had to get pretty verbal and be ready to run when the door opened so we could get in. That's not something I enjoy and it wasn't fun. We made it work, I just think there's room for improvement there. Another issue was the doors. Only certain doors were accessible. Unfortunately many were also not functioning right, were being repaired, or were totally broken, meaning we'd get out one, not be able to get back in, and then have to walk quite a bit to find another accessible door. When I informed them of this issue, they were very receptive and started testing doors, which I really appreciated. The dining rooms were tight, but there was enough room to comfortably move around and they always helped us find good seating. </span></li>
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<span style="font-family: "verdana" , sans-serif;">Overall, the kids loved their experience on the trip and are already asking to go back. The things that made it tricky for us didn't make it tricky for them, because as parents we just did what needed to be done and did our best to make it fun for them. We were pretty tired by the end of it, but they were bummed it was time to go. I wish I had their energy! We were SO very thankful that we had no emergencies onboard the ship. I will also say, though there were many issues onboard, the crew members were always very helpful and really went above-and-beyond to try and make sure the kids enjoyed their time there. We even had a dining room issue one night that we just kind of brushed off and didn't mention. When we got to our room, they had delivered treats for us all with a letter of apology. It was very unexpected and very appreciated. </span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>I do honestly feel that Disney, as a corporation, does not much consider or value the disabled community. </b> They have so many opportunities to improve rides so that everyone can utilize them (some still can't be ridden if you use a wheelchair, like the Pinocchio ride at Disney World that only has steps for exiting in case of an emergency), and they don't even make their new rides accessible unless you can transfer. Universal Studios has figured out how to do this, so Disney should be able to as well. Their new Starwars rides require wheelchair transfers. They can do better. They have the money to do better. They chose not to do better. They have such a big opportunity for diversity in their movies and they chose to leave out an entire population group. They can do better. They chose not to do better. Now, we've had many amazing vacations with Disney, and so many cast members have gone out of their way to make sure we were taken care of. The employees of Disney are generally amazing. <b>It's the policies and the lack of care that's unacceptable. </b></span></div>
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<span style="font-family: "verdana" , sans-serif;">I'll close with some more pictures from our trip. We really enjoyed our time together as a family and we made so many amazing memories. At the end of the day, that's what counts. We were so blessed and thankful to be able to take this trip and have this time together. </span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com1tag:blogger.com,1999:blog-2616452666148403026.post-89902412849677728382019-10-04T09:17:00.002-07:002019-10-04T09:17:12.157-07:00Our Amazing Time with the Harlem Globetrotters <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "verdana" , sans-serif; font-size: large;">Life has been so busy (as usual), and I am so behind on my posting. We had such an amazing experience though, and I wanted to make sure to share. </span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">A few months back the girl’s dance studio, Dancing in the Streets, asked if they would like to be part of a dance in the Harlem Globetrotters halftime show. I asked the girls and of course they very quickly said “yes”. </span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">After multiple practices the day arrived and we drove to Phoenix for the game. The girls were beaming when they went out on the court. It meant so much to them, they are still telling everyone they meet about it. Their outfits were beautiful but paled in comparison to their smiles. They were on cloud 9!</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">I vividly remember a conversation I had with Madi when she was younger and our other two girlies weren’t home yet. She was dancing at our local community center and she was sad because she didn’t get to dance on stage. She shared with me that her dream was to dance on stage. I called so many studios, but never found one that would work. I tried again here in Tucson to no avail. Then we found <a href="https://www.ditsaz.org/">Dancing in the Streets</a>. Thanks to their amazing work, all the girls have been able to fully participate in their shows and shine onstage. We never thought to dream bigger, though. It didn’t occur to us that there was something bigger for the girls than onstage. It turns out that there was; the halftime show was their opportunity for their “bigger”. Watching them out there brought tears to my eyes (and I never cry!). Dreams do come true, and sometimes you find your dreams weren’t even big enough because God has something even better. It was a day we will never forget!</span><br />
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-47093820489935649982019-10-04T00:14:00.000-07:002019-10-04T00:14:21.697-07:00Kicking off Spina Bifida Awareness Month <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Today kicks off the first day of spina bifida awareness month. When I was 22 weeks pregnant, Madi was diagnosed with spina bifida. I had no clue what spina bifida was and I was so scared. I felt like my world was crashing down. I had no idea what it meant for her and the doctor made it sound like a death sentence (literally). I remember pleading with God and telling him that I could deal with anything He threw our way, but to please let her make it through the rest of our pregnancy and in to my arms. Not long after Madi was born I realized how much of the story the doctor left out. Sure, there would be surgeries, therapies, appointments, wheelchairs, etc...., but more importantly there would be smiles, laughter, joy, determination, and LIFE. He forgot to tell me the “stuff” would all start to feel normal, and it would all be ok. Fast forward a few more years and Madi’s diagnosis also brought us Ramya, because we had learned over the years that spina bifida and wheelchairs really aren’t scary. Now we get the privilege of watching both girls grow, thrive, and live their lives abundantly. I hope by sharing our lives we have helped everyone see that we aren’t defined by our list of “cant’s” (and trust me, every person on this earth has a list in one form or another). That list doesn’t rob us of our joy or keep us from living our lives to the fullest. We don’t live life on the sidelines. We are truly blessed beyond measure. </span><br />
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-27846077464919676412019-08-05T00:37:00.000-07:002019-08-05T00:37:26.233-07:00The Trip of a Lifetime <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Arial, Helvetica, sans-serif;">In June we got some very exciting news. We had applied through Dream Factory to have a wish granted for the girls, and they were chosen. They asked us if we would like to go to Florida with Kurt Warner through his foundation, First Things First. When I checked the calendar, the week they asked us to go happened to be the only week that month that had no extra appointments. The only things scheduled were our regular therapies (OT, PT, speech, attachment, sensory, and reading), and those are easily movable. The timing was a God thing for sure, because our calendar is never that empty! I went through the itinerary with the girls, and they happily agreed. The plan was to head to Florida, stay at Give Kids the World, and do all the big theme parks. Some of the time we would be on our own, and some of the time we would be with Kurt Warner, his wife Brenda, and their children and grandchildren. My parents also joined us for the fun. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">On Saturday, July 6th, we were off! Our first flight from Tucson to Phoenix got delayed, and then our plane was delayed again in the air. We arrived in Phoenix and had to run a few corridors to our connecting flight to Florida. We were the last to load, arriving just as they were calling our name for the last time on the intercom, but we made it! The rest of the flight went smoothly and the kids enjoyed their time in the plane. It was late by the time we made it in to Florida, but they had had two people from Give Kids the World there waiting for us to help us with our luggage and to our car. They had rented an accessible van for us so that we could travel safely around Florida as a family. It was amazing and I sure miss that van! We are in the process of trying to apply for a grant to help us get a new van, but that's a whole different (long) story. On Sunday, the fun started. We got to spend the entire week there and didn't leave for home until the following Sunday. Luckily our return flight home went much smoother and there was no running involved. We even had time to grab food and use the airport restrooms, which was a big bonus. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We had such a busy trip, but we got to do everything the kids have ever wanted. Princess makeovers, dolphin interactions, character meals, Harry Potter Land, rides galore, fireworks, getting stuck on a water ride and needing to get carried off by the fire department (ok, ok, that one wasn't on our wish list. It just ended up being an added bonus I guess)... You name it, we did it! The entire time we were so well taken care of. There were always extra hands to push wheelchairs. Meals were made to our dietary needs at GKTW so that we could dine there without worrying. We were provided with an oxygen tank in case Madi had a seizure and needed it. First Things First even brought us sunscreen, backpacks, lip gloss, raincoats (there was a lot of rain this trip!) and so much more to make sure our needs were met. The kids were spoiled and were given souvenirs galore. In fact, they were given so many, it took an extra suitcase just to get us home! When I say all our needs were met, I mean ALL. They even brought us that suitcase, knowing we would need it to get home. We felt so blessed and humbled to be part of it all. The memories we made this trip will truly last a lifetime. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Here are some of our favorite photos from our time there. As you can see, we had an insane amount of fun!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Give Kids the World Village was an amazing place to stay. Each family gets a little house with bedrooms, multiple accessible bathrooms, a kitchen, and a washer and dryer. There were characters dining with us at meals, rides on site, a salon, a movie theater, and a really neat pool. The kids could even eat ice cream for breakfast. Talk about spoiled! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The girls got to add a star to Star Tower at the village. The celling is covered with stars, each one representing a wish child that has stayed at the village. Each child who stays at GKTW is on their dream trip through a dream granting organization. They have so many stars, they've had to build a new tower. It's hard to put in to words how it felt standing in the middle of all of those stars. To know that each of those families understands, to a degree, what your journey looks like was an overwhelming feeling. To know that each star represents a child who faces life-altering disabilities or illnesses took my breath away. So many unique stories and families, brought together in such an impactful and significant way. It was breathtaking, to say the least.</span></div>
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Princess Makeovers</div>
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Feeding Gators at Gatorland</div>
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Universal Studios (This was Conner's dream, but we felt like it was important to make sure he was included in picking the fun. He is such an amazing, helpful, and tender-hearted brother. We thought he deserved to get his wish too)</div>
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SeaWorld</div>
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Disney Magic Kingdom (Two Days Worth!)</div>
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It was truly a magical time.</div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-37186929294417448962019-03-15T15:40:00.000-07:002019-03-15T15:40:33.754-07:00Following Their Dreams of Dance<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I'm so far behind on posting, and haven't posted some of our most recent amazing adventures. This is one I don't want to miss, though! </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Right after Christmas, the girls were part of the Dancing in the Streets performance of the Nutcracker. Each girl got to be the lead in their own dance, and they danced together in a few dances as well. They had such a wonderful time and are still talking about it, even though it's been a few months. The girls looked beautiful and were truly glowing. They did a fantastic job. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">We are so thankful for Dancing in the Streets and all they do for not only our girls, but also the children in our community. They see the beauty in each dancer and push each girl or boy to be their best. If you'd like to donate to their organization, or learn more about what they do, you can visit https://www.ditsaz.org/. Here are some photos and videos from their performance.</span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-26539709125802533912019-01-02T21:40:00.000-08:002019-01-02T21:40:26.699-08:00Beauty from Ashes<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: #1c1e21; display: inline !important; float: none; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">From best friends and crib-mates to sisters. My girls lost everything. They lost their families when they were brought in to the orphanage. They lost their friends, caregivers, language, and culture when we brought them here. Though they now have the medial care they needed, a family that loves them fiercely and advocates for them, more than enough food, new friends, a good education, etc...., we can’t take away the loss or trauma they experienced. Adoption can have gain, but it’s deeply routed in loss. I’m thankful that they will always have each other.</span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">(For those of you wondering, Deena was in Ramya's third orphanage. They were best friends for the almost year that Ramya was there before coming home. I met Deena on my trip to bring Ramya home. Shortly after my return, we decided to try and adopt Deena. The process took about 2 1/2 (very long) years.)</span></div>
Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-85933465185643745292018-12-09T15:57:00.000-08:002018-12-09T15:57:37.053-08:00Our Newest Family Photos<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Our new family photos are here and they are perfect! They came out just how we wanted. You may notice a "new" addition to our photos; Kyla. Kyla is actually not new to our family and has been "family" for years. She was a neighbor who has been in our lives since our kiddos were little. She even lived with us for a year while she finished high school, before Ramya and Deena came home. She's been close for many years, and has been in Tucson close by while she goes to college to be a Vet Tech. She's over every day and is our unofficial family, so it was about time she joined us in our family photos. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">A big "thank you" to <a href="https://www.facebook.com/public/Katie-Reich">Katie Reich Photography</a> for the amazing photos. Enjoy!</span><br />
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-36673741175547405172018-09-17T22:38:00.000-07:002018-09-17T22:38:17.808-07:00What's One More Anyway?<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">For those of you who know me well, I know right now you are thinking what's one more.... child. Unfortunately this post is not to announce that we are adopting another child (though if God drops a baby in my lap, well, that would be a different story; just don't tell David). In this case, I'm saying, what's one more diagnosis.</span><br />
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<span style="font-family: Arial; font-size: large;">Over the years I've noticed many things in Conner and Madi that lead me to believe they might be dyslexic. I finally found a good place to get them tested, and it turns out my suspicions were correct. Both kiddos were diagnosed with dyslexia. They are both so smart and have done so well, despite their learning difficulties. Most people would never notice, but of course being their mom and teacher means I notice the "little" stuff. </span></div>
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<span style="font-family: Arial; font-size: large;">We had a meeting to go over the results of their psychoeducational testing and we got some great ideas to help us continue to teach them at home. We will be starting some new curriculum and programs. I'm excited to watch them blossom with the right tools. I'm also going to be using many of the programs with Ramya, and I really believe it's going to help her as well. </span></div>
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<span style="font-family: Arial; font-size: large;">The meeting was a bit of a relief for me, and in fact I cried. I always took their learning challenges personally, thinking their must be something wrong with the way I was teaching them. Of course I know that's not true, but it was easy to feel. I couldn't figure out how someone with their Master's Degree in elementary education AND a reading endorsement, not to mention a 1 to 4 ratio and an extreme amount of dedication, could fail to teach her kids reading, spelling, and writing. Of course they are doing all of those things, but not always fluently or easily, and retaining information is hard for them. I really know that they are thriving and excelling, despite their challenges, because they are allowed to learn at their own pace, based on their interests and learning styles. I know it in my head, but my heart didn't always believe it. </span></div>
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<span style="font-family: Arial; font-size: large;">So now it's official, we have added another diagnoses for Madi, and Conner's first. We haven't let any of the other diagnoses stop us yet, and we aren't about to let any stop us now. I know it won't slow them down. These kids will change the world one day, I just know it!</span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com5tag:blogger.com,1999:blog-2616452666148403026.post-4081091310125201132018-08-20T00:31:00.000-07:002018-08-20T00:31:20.294-07:00One Year is a Huge Reason to Celebrate <div dir="ltr" style="text-align: left;" trbidi="on">
Deena has some great news that we are excited to share....<br />
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It's officially been just a little over a year since her last break! <br />
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Now that she has all her major leg bones rodded, has been getting pamidronate infusions, and has good nutrition in her, her breaks seem to be slowing down. There was a time we couldn't make it to a follow up appointment without a new break, and I honestly wasn't sure we'd make it to a year. Of course anything can happen at any time, but for now, we are celebrating! Deena is such a strong, creative, smart, and spunky girl. We are so blessed to get to watch her grow and share her life with her.<br />
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I'll share a little Deena story for anyone who needs a laugh today. Deena and Madi have been really in to Wonder Woman and are frequently in WW costumes, as seen below (Which is one benefit of homeschooling; they can wear whatever they want to school :)). They had a hilarious conversation the other day (which I shared on Facebook, so my Facebook friends have likely already heard it) that I wanted to share. These kids crack me up!<br />
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Girls- We are might Amazon warriors!<br />
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Conner- So you deliver packages?<br />
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Girls- No! We defeat bad guys!<br />
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Conner- Well I ordered a Wonder Woman motorcycle and it's not here yet.<br />
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Deena- It will be here in two weeks.<br />
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Deena is a mighty warrior for sure, as are all of my kiddos. Nothing will slow them down!</div>
Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-27716887483706879182018-06-27T01:41:00.002-07:002018-06-27T01:41:38.647-07:00Love Makes a Family<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">As I sit here going through my photos to attempt and catch up on posts (which I never seem to do), one thing stands out above the rest. Life is messy, sometimes logistic are tricky, and nothing is perfect. Behind the smiles are sometimes struggles unseen. We don't let anything slow us down, though, and we make sure to live life to it's fullest. We try to make each day filled with joy and adventure, even when it's messy. <span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial, Helvetica, sans-serif; font-size: 24px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">We are so blessed to be going through this journey together. </span>No matter what happens, we always have each other, and it's life's greatest gift! </span><br />
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-9122862321541265392018-06-27T01:19:00.000-07:002018-06-27T01:44:05.239-07:00Challenger Baseball <div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-size: large;">We just wrapped up another season of Challenger Baseball and had a blast as usual. The girls really love playing, and Conner is a great helper. The organization is wonderful and we all have so much fun going out together. The kiddos are so full of joy and each one brings so much to the team. We can't wait until next season!</span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-45820077148349345202018-06-27T01:08:00.001-07:002018-06-28T21:09:46.316-07:00Dancing in the Streets... A Dream Come True<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Anyone who has ever spent time with my girls has surely realized one thing; they love to dance. Wherever they go, no matter what they are doing, if there's music, they start dancing. Madi's dream has been to dance on stage since she was just a tiny girl. She took dance lessons at the local community center, which she loved, but they never had performances on stage. I called so many studios, but couldn't find somewhere that would include her and also had real performances. Fast forward a few years, an adoption, a move to Tucson, and the hunt continued. A few good friends told us about Dancing in the Streets, so I contacted them. They were excited to work with the girls and included them in their performance of Sleeping Beauty.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Leading up to the performance the girls went to weekly practices. Joey and Soleste, the owners of the studio, worked hard to understand how the girl's bodies move and what they are capable of. They made sure to stretch them to try new things and move their bodies how they are able. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> They performance was AMAZING and the girls were just glowing. They wore stage makeup, tiaras, beautiful costumes, and were radiant! They had so much fun and are still telling everyone about it. We had friends, family, and even therapists show up to watch the girls and they truly felt like stars. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It was such an awesome experience and it meant the world to the girls. We feel so blessed to be part of their studio and all that they do. </span></div>
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<span style="font-family: "arial"; font-size: large;">Dancing in the Streets does so much for the community; even giving scholarships to kiddos who can't afford dance. If you are looking for an organization to get behind, this is another great place that needs your help! You can read more about them <a href="https://www.ditsaz.org/#donation-form">HERE</a>. </span> </div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com1tag:blogger.com,1999:blog-2616452666148403026.post-69660519832103814212018-06-27T00:38:00.002-07:002018-06-27T00:38:57.767-07:00Our Chicago Trip<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Verdana, sans-serif; font-size: large;">Last month we took a family trip to Chicago to visit with David's grandma and do a little sightseeing. It was such a fun time for us all. </span><br />
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<span style="font-family: Verdana; font-size: large;">We spent the first three days visiting David's grandma in a little suburb about an hour outside of the city. We went to the park and a war museum, and really enjoyed our time with her.</span></div>
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<span style="font-family: Verdana; font-size: large;">After that we stayed downtown and showed the kiddos as much as we could for our remaining days. The second day downtown Madi had a seizure so we ended up touring the children's hospital, but she was very well taken care of and we were back to the fun quickly. We saw the Science of Field and Industry museum, the aquarium, the Blue Man Group, Millennium Park, went shopping at the American Girl store, and I even got to see one of my favorite friends that moved a few years back. </span></div>
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<span style="font-family: Verdana; font-size: large;">We are so thankful that we got to go, and for our time there together.</span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-18597678255339698412018-06-27T00:21:00.002-07:002018-06-27T00:21:26.628-07:00Our Latest Wheelchair Decorations<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The girls are loving keeping their wheelchairs decorated, so we've been trying to keep them up. Here are our last two decorations; Spring Flowers and Fourth of July. The girls are very proud of them!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Spring....</span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Fourth of July...</span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-37690792457921515822018-06-27T00:15:00.000-07:002018-06-27T00:15:02.581-07:00Little Hooves and Big Hearts <div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We have been so blessed to be part of Little Hooves and Big Hearts in Tucson. The organization came to the Children's Clinic when we were there for physical therapy one day. They had some of their ponies with them, and the kids loved spending time with them. The ponies had Build-a-Bear shoes on, so of course the kids fell in love right away. We now get to go work with the ponies on a monthly basis and it really means so much to the kids. They include all of the kids and it really boosts their spirit.They talk about it non-stop! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Everything they do for our kiddos is provided with no cost to us. They are so sweet and amazing with the kids, and we really appreciate all that they do! If you are looking for an amazing organization to give to, this is it! You can click <a href="http://littlehooves.org/giving/">HERE</a> for more information about their <a href="http://littlehooves.org/giving/">organization</a>.</span><br />
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<span style="font-family: Arial; font-size: large;">And now, for your viewing pleasure, here are some adorable photos of the kiddos working with the ponies.</span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-75463766354398205092018-02-26T22:35:00.000-08:002018-02-26T22:35:00.455-08:00Now for the Medical Stuff<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Overall, though we've had plenty of therapy and appointments, the kids are all doing well and are pretty stable medically, which is a HUGE blessing. Here's a quick update for each kiddo:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Conner: Conner had been back in speech therapy for about 6 months to work on his r's. He was motivated to get them down and just exited in December. Because that was the final sound he needed, he should be completely done with speech therapy now. We are all proud of him! He's been in therapy on and off since he was about 4, so this was a big moment to celebrate. He wanted to pick dinner, so of course that's what he got!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif; font-size: medium;"><span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif;">Ramya: Ramya has also been pretty stable medically. She's needed some wheelchair adjustments and needed her AFO's lengthened (she's had her wheelchair about 4 years, and her AFOs about two, so I'm thankful she's finally grown a bit), and also has been continuing with vision therapy and attachment therapy, and we are also adding back in some cranial sacral work. She has OT, PT, and speech too, of course, but those will be ongoing therapies. We just did a routine renal ultrasound and she will need a full brain and spine MRI soon as well, just to see how things are going. We are praying everything looks good there. Ramya continues to make progress in homeschool and therapy, and we are proud of her!</span></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Deena: My little feisty Deena is doing great. We had a bit of a scare when her phosphorus came back low at her last infustion/blood draw. The doctors started talking about rickets, which would be no fun and would just further complicate her bone development. I upped her vitamin D, which was also low, then we re-tested her. Her test came back within normal ranges. She had another draw more recently, which showed that her counts have continued to improve. We were so thankful for that! She also has not had another break since her September one. during therapy This is HUGE and another big thing to celebrate. She had her first bone density scan, and though it showed a significant defect, the doctor said her scan looked better than she expected. Yet another big praise! Her bones are responding well to her Pamidronate infusions and she has gained so much strength. She spends much of her day standing and practicing walking and is highly motivated, which shows. She's progressing quickly in physical therapy as well, which is awesome. She's doing really well!</span></div>
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<span style="font-family: Trebuchet MS; font-size: medium;"><span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif;">Madi: Madi recently got an <a href="https://www.naturaldentistassociates.com/alf-appliance/">ALF (Advanced Light Force) </a>appliance in at the dentist, and we are hopeful we will start seeing changes in her bite, jaw growth, tongue thrust, sleep, eating, and breathing soon. She wasn't a big fan the first few days, but she doesn't even notice it's in her mouth any more. She goes back monthly for adjustments and they are pretty quick. Madi is continuing with vision therapy and has also added in some cranial sacral work, in addition to her weekly OT and PT. She also just had a renal ultrasound and will have an MRI as well. That's a long, complicated story that has consumed hours to figure out, which I'll touch on later, but it should all be completed soon. Madi needed some hormonal testing done with endocrinology, which was not fun at all, but it's over with now, and we have the answers we need. She's has had a huge growth spurt, again, and no longer fit in her wheelchair or RGOs. Her RGOs are now in, though they are currently back in the shop for some adjustments, and she's so excited to be back up and standing. Her new wheelchair should be here next month, which is also exciting news. She works really hard and it's so fun watching her grow.</span></span></span></div>
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<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Me: I know, I know, you never hear about my medical "stuff", but today you get to. I am so very thankful to be healthy and be able to do what my kiddos need, and not have many updates in this area. Last month I was diagnosed with <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/">SIBO (Small Intestinal Bacterial Overgrowth)</a>. I have a minor case, thankfully, but it was the answer to some uncomfortable tummy issues I was having. I was constantly bloated, puffy, and retaining water, no matter how healthy I ate and how many foods I cut out. I'd wake up first thing in the morning feeling bloated and full. You'd think I'd be skinny because eating hurt, but I love to eat, so that never stopped me. I've been on my treatment plan for a little over a month now, and I've felt so much better. I am not eating many foods, because of the phase I'm on, and am struggling to keep my daily calories high enough, but I'm trying really hard to keep my calories and energy up so I can do what I need to with the kiddos. My doctor allowed coffee, as long as I drink the Bulletproof brand, and I am sooooo thankful for that. I've been able to continue working out, though I feel my muscles get tired quicker than I like. It's all worth it to heal, though, and feel better. Some of my symptoms returned recently, though I haven't had any new foods or moved phases, so today I had just bone broth and no food to see if that would remedy it. Sadly, I feel worse today than I did before. I'm suppose to do just bone broth one more day, and then if that doesn't work, I'll go back on antibiotics for a few another round. Though the process can be long and I miss a lot of my favorite foods (sweet potatoes, popcorn, quinoa, salads, and so much more), I'm at peace with the plan. The most important thing I can do is take care of me so that I can be the mom I need to be, and that's exactly what I plan to do. I'm thankful to have found a good naturopathic doctor who is willing to dig for answers and keep me running strong.</span></li>
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<span style="font-size: medium;"></span><span style="font-family: "Trebuchet MS", sans-serif;"></span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Other than that, life has been typically crazy and fun. The girls are currently in dance and have a recital coming up in April. They've had so much fun practicing.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">David took the girls to the daddy-daughter dance at a local Church, and they had such a wonderful time with him. Three years ago, Ramya and Madi were headed to the daddy-daughter dance at our homeschool co-op when Madi had a seizure and couldn't attend. Ramya was able to go, which was really special for her, but Madi still talked about how sad she was to miss it and how much she wished she could have gone. When I read about the dance, I signed the girls up right away. I'm so thankful the girls have a daddy who loves them so much, and who cherishes spending time with them. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We had good friends visit this weekend and stay with us, which was so much fun. We went to ice cream twice (man did that ice cream look good), had pizza (even that looked good, and I gave up on pizza a long time ago because it always makes me feel sick), went to the zoo, and just enjoyed their company and conversation. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"> Last night I was able to meet up with a few of my favorite mom friends, who have been there since Conner and Madi were little, and who helped welcome Ramya and Deena home. I've missed my friends. We've always been blessed with such an amazing support group, and moving away was hard. Between having friends visit, and getting out with my friends, my heart is happy and filled. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I think that's it for now! I'll update once the girl's testing is done and we know more. Have a blessed and joyful week!</span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com1tag:blogger.com,1999:blog-2616452666148403026.post-7845458898798012042018-02-16T00:31:00.001-08:002018-02-16T11:04:47.426-08:00An Attempt to Catch Up<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I've gotten so far behind on our blog that I'm not sure how to catch back up, ha! Each time I sit down, the task seems a bit daunting because it's been so long. In general, it's a good thing, though, because it means we've been so busy having fun and living our lives, that I haven't had much time to stop, sit, and reflect. Though maybe in our busy schedule, sitting is what I need from time to time. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When I last left off, we had gone to Disneyland and California, then came home to enjoy Deena's new bike. We worked on getting back in to a routine with homeschooling, appointments, therapy, and life. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We enjoyed some homeschooling fieldtrips, the girls and I went to see Shopkins Live, the kiddos had a blast on Halloween, and we enjoyed life being slow for a bit. <span style="background-color: transparent; color: black; display: inline; float: none; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Just about when we got settled, though, things got busy again. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In November Madi turned 9. I'm still in total shock that my baby is getting so big. Madi had so much fun at her birthday party and loved celebrating. We traveled to Phoenix and had a painting party with our friends, then also had a family party to celebrate. She picked a Pokémon theme and got a cute little Pokémon dress to wear to the celebrations. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"> <span style="background-color: transparent; color: black; display: inline; float: none; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">We came home, recovered briefly, worked on some homeschool projects, and then Thanksgiving hit. We traveled back to Phoenix to celebrate with our family, and had a really nice time.</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">(In Phoenix with family....)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">(Proof that we REALLY do relax sometimes)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We re-settled once again, making sure to have some fun amid the busy Christmas season. We went to the Desert Museum, decorated wheelchairs, prepped for Christmas, and even got to ride a party bike with my parents (who came to visit), my Aunt, and my second cousin to look at Christmas lights. Oh, and Starwars. I can't forget Starwars. We saw it on opening night and all loved it, of course.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Oh goodness, and Santa. I can't forget Santa. We went to a really fun event with Hope Kids where we got to play games, ride rides, and spend time with Santa. The kiddos even got gifts and had so much fun. We also Santa at the Children's Clinic, where we go for therapy and some appointments, as well, and the kiddos got more gifts. We had a special visit from my birth grandma, Donna, and her husband, Jim. We enjoyed talking and catching up, and they gave the kiddos their Christmas gifts as well. They were on cloud 9!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We celebrated our Christmas with the kids a little early, and then we traveled, once again, to Phoenix to spend time with family for Christmas. Since both David's family and my family live in Phoenix, we travel often. We really enjoyed our time there, and came home ready to rest a bit. We also came home to a lot of appointments, but we made it through. We celebrated David's birthday as well, which included cheesecake, so everyone was pretty happy about that. David's parents sent David and Conner on a hot air balloon ride for their birthdays, and they had a wonderful time. It's something they will never forget, that's for sure!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Over New Years my birth dad, Mark, and his wife, Michelle, came to visit and stay with us for a few days. We had a really fun time with them. The kids especially enjoyed taking them to the Children's Museum, which they love.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The New Years started off with a bang as we celebrated Conner's 11th birthday (I know, 11! I can't believe it either!!), Deena's 10th birthday (Her second birthday home!!), and Deena's two-year adoption day (<span style="background-color: transparent; color: black; display: inline; float: none; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">We celebrated with Indian food at her favorite café, at her request, which was perfect)</span>. We had a friend party for Deena and Conner where we went to watch Paddington 2, then came home for pizza and donuts. The kiddos loved their party, and it was so fun watching them be so excited. They picked a cat theme and both wore cat-themed outfits, which was adorable. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We had friends come visit for the day in January and we had a lot of fun with them. We got to check out a pinball arcade we've been meaning to visit, and we are planning to go back for sure.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We found an amazing organization called Little Hooves Big Hearts, and have had the privilege of visiting and working with their miniature horses twice now. Our second trip out was in January, and we are looking forward to our visit next month. Every time we leave, the kids tell me they had "the best day ever". They really love going and spending time there. They let them groom the horses, do obstacle courses with them, and they just have a blast. </span></div>
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<span style="font-family: "arial";">It took me a month or so, but I finally got the Christmas decorations off the girl's chairs. This time we went for a nice spring look, with ribbon and flowers.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A few weeks ago, we celebrated Ramya's 5 year adoption day. She was really excited to celebrate, as we all were, and was beaming all day. Ramya is a kiddo who doesn't often show much emotion, and it was good for the soul to see her so excited. She chose to go to Smashburger to celebrate. We also watched her adoption video together and shared stories of our time in India.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Last weekend we were back in Phoenix for a fun, whirlwind of a trip. We had a family birthday party for Conner, Deena, and Ramya (Ramya's birthday isn't until March, but we have been lumping all the cousins together twice a year for big family parties. It's a ton of fun, and also helps make us slightly less busy and crazy), and also had two baby showers to attend. The kiddos party was, once again Pokémon themed. We had it at a park that also has a small train. It was such a fun time! </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We ended this week with a bang....</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">.... sorry, I couldn't resist, she's just too cute. We cashed in some cash back bonus awards we had on our credit card for Dave and Busters giftcards, then took the kiddos there for dinner and games to celebrate Valentine's Day and how much we love them. They, of course, had a blast, and came home with a few new fun trinkets, like this whoopee cushion. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As you can see, we've been crazy busy, but in a good way! I'm sure I left out a bunch of stuff, but you get the idea :). </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Though life is busy, we really try to focus on having fun. It would be far to easy to get wrapped up in all of the therapy, appointments, homeschool, and "medical" stuff in our lives. We really try to be intentional about making sure we find joy amongst the busyness, and give our kids lots of opportunities to just be kids. We may not ever sit down, but it's worth it!</span></div>
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<span style="font-family: "arial";">I have some medical updates as well, but I think I will wait on those for now. Overall, everyone is healthy and we are thankful for that!</span></div>
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<span style="font-family: "arial";">If you've made it this far, thank you for taking the time to catch up on what we've been up to. We always appreciate your thoughts and prayers, and it means so much that you are walking this journey with us.</span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com1tag:blogger.com,1999:blog-2616452666148403026.post-67879566498413156222017-11-06T10:53:00.000-08:002017-11-06T10:53:45.329-08:00Deena's New Adaptive Bike<div dir="ltr" style="text-align: left;" trbidi="on">
Deena was granted her very own adaptive, hand-pedaled bike through Athletes Helping Athletes and Roadunner Sports. She was SO excited to be able to ride with her sisters and have independence. Anyone who knows Deena also knows she's a bit of a daredevil and she LOVES to go fast. After talking in length to her physical therapist and her orthopedic surgeon, we decided to go with a hand-pedaled bike. Though her rods have made her legs beautifully straight and so much stronger, we know that more breaks are in her future. Since most of her breaks are in her legs, a hand-pedale bike will give her the freedom to ride even if she's in a cast. We also liked the tricycle type wheel style for added stability and safety, so we ended up with an Invacare bike, just like her sisters have.<br />
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Deena's bike came the day before her last rodding surgery, and she couldn't wait to heal enough for a ride. Between the heat and vacation it took a bit to get her out and on the road, but we've been out for a few rides now and she really is loving it. It's such an enormous blessing to be able to have ALL of our children out, riding together, and just being kids!<br />
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We just want to say a HUGE "thank you" to Roadrunner Sports, their Athletes Helping Athletes foundation, and everyone who donates to their fundraisers. You have impacted our children's lives immensely and we are SO thankful!<br />
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0tag:blogger.com,1999:blog-2616452666148403026.post-64718816369818453432017-11-05T23:22:00.002-08:002017-11-05T23:23:58.713-08:00And Now for the Fun<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "arial" , "helvetica" , sans-serif;">We came home from vacation to a big flurry of appointments, laundry, and therapy while we played catch-up from being gone. Life has pretty much settled back down (as much as it ever settles), so I wanted to make sure to check in and post photos from our vacation.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Right before we left, Deena had an appointment with Dr. Vincent, her orthopedic surgeon, for a final surgery follow-up. He said her leg was healing beautifully, she was cleared for all regular activity, and (barring any emergencies) we don't need to follow up for 6 months! It's so exciting! It was nice to be able to head out for vacation with a clean bill of health.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">First up on vacation was Disneyland and California Adventure, of course. We contemplate not going every year, because of the cost, but the kids love it so much and we always seem to end up there. The parks were packed and a bit difficult to navigate, but it didn't stop us from having a blast. There were multiple times I had to make a human blockade around Deena to keep people from bumping her, but we managed and it was totally worth it. The girls favorite part was getting the princesses autographs and riding Dumbo, It's a Small World, Radiator Springs Racers, and the Haunted Mansion. Conner loved all the fast stuff, with Guardians of the Galaxy being a favorite this year. Here are some of my favorite pictures from the parks this year:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">After spending a few days at the parks, we headed over to Carlsbad and spent a week on the beach. It was exactly what we needed; time to relax and recuperate, with no agenda. We found a really nice, clean beach that had two beach wheelchairs, and the girls had a blast being out in the water. Conner spent most of his time boogie boarding and couldn't have been happier. We also spent time with my birth mom and her husband, as well as my birth dad and his wife. It was really nice to get to see everyone, and the kids really loved visiting. They have so many people who love them; we are so blessed! We also spent part of a day at SeaWorld because they had their kids-go-free in October deal going on, and Ramya's been asking to go. It was nice and slow, so it was pretty relaxing even though it was another park. The kiddos all had a blast, and their favorite part, hands-down, was putting their hands in the tank with the fish that clean you. They crack me up!! We probably could have used another week on the beach, but we are so thankful for the time that we had. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">(This is Deena's face when she is "not cold")</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Though there were a few bumps in the road with hotel issues and the crowds, we found most places to be really accommodating. We are so glad we got some time away to re-connect and relax. I have a lot more "life stuff" to share, but the rest will have to wait. Thank you for checking it!</span></div>
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Jamiehttp://www.blogger.com/profile/01007178188240647348noreply@blogger.com0