tag:blogger.com,1999:blog-22124854780802870792024-03-12T20:27:08.764-06:00Jaxsons FightLaceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.comBlogger914125tag:blogger.com,1999:blog-2212485478080287079.post-76417774166569767482015-05-07T18:10:00.001-06:002015-05-07T18:10:18.148-06:00Because it's magic!Why we love our Disney CM's!<div><br><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAjk3VzmQaMM8DiG9ubNbKDc1ssURvivKBxQFNGuCePQTP3_xDcNh8rl6z_44hQRqvJDgS7cPID12w3sko0EseOFBGI6ZAdP6oovDycEfEkg4dwhKB7h_kaNSWIL1p-kwsUyZpMd03mRnm/s640/blogger-image--353685945.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAjk3VzmQaMM8DiG9ubNbKDc1ssURvivKBxQFNGuCePQTP3_xDcNh8rl6z_44hQRqvJDgS7cPID12w3sko0EseOFBGI6ZAdP6oovDycEfEkg4dwhKB7h_kaNSWIL1p-kwsUyZpMd03mRnm/s640/blogger-image--353685945.jpg"></a></div><br></div></div><div>Because they make life magical</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCaBpbsKXOTo5Sc0X8v2S6L6t_8kIl5Jc48XHEg2GTZFzMGSofw5UOT7UITcIT0efEw7fBT0pOTc_20r4ZpAXmsKDWTJTRUOZlazplY10FZ8g2P_NUdfljVqJDqAH_4WPsCGCYqCnWBYAB/s640/blogger-image--902964899.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCaBpbsKXOTo5Sc0X8v2S6L6t_8kIl5Jc48XHEg2GTZFzMGSofw5UOT7UITcIT0efEw7fBT0pOTc_20r4ZpAXmsKDWTJTRUOZlazplY10FZ8g2P_NUdfljVqJDqAH_4WPsCGCYqCnWBYAB/s640/blogger-image--902964899.jpg"></a></div><br></div><div>Every single day!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYA43Nj3u9pL65Huq-Fh3qeiE-LavZZkX_moKUzCNWOFC7FF7J00NuiTpiqmVjb8L3IjVpDse4FpL22viG9oim3mF_zMWW1NgdiN9mK-bKFJxrEwkybSy8lvKRdSvnovVvtdMWBRORH239/s640/blogger-image--1954989994.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYA43Nj3u9pL65Huq-Fh3qeiE-LavZZkX_moKUzCNWOFC7FF7J00NuiTpiqmVjb8L3IjVpDse4FpL22viG9oim3mF_zMWW1NgdiN9mK-bKFJxrEwkybSy8lvKRdSvnovVvtdMWBRORH239/s640/blogger-image--1954989994.jpg"></a></div><br></div><div>Thank you for loving our princess like we do!</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfH1FIzSwKJU7ixLV3j2RFxAhKd9IHDndjLtcGt8VvzkASH5M_ZJqQ3h5yacIE0Y_fN6cK7HoGoX9KFJmzmaQ4ewJ1t5jfyWheQ5_gey405jxmtYxFPhu0mmEpO7dpkoS1f3pgRwIVphvP/s640/blogger-image--889192265.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfH1FIzSwKJU7ixLV3j2RFxAhKd9IHDndjLtcGt8VvzkASH5M_ZJqQ3h5yacIE0Y_fN6cK7HoGoX9KFJmzmaQ4ewJ1t5jfyWheQ5_gey405jxmtYxFPhu0mmEpO7dpkoS1f3pgRwIVphvP/s640/blogger-image--889192265.jpg"></a></div><br></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com1tag:blogger.com,1999:blog-2212485478080287079.post-57922051239576621692015-04-14T20:20:00.001-06:002015-04-14T20:20:25.724-06:00One rough winter!Its hard to even think there is a winter when it's warm all year long! <div>But this year definitely showed us a cold side! We have all been sick nonstop this year. Jax hasn't been this sick since we moved to California, nearly 4 years ago!</div><div>He is finally back to baseline after having rsv. I actually got sick first, surprisingly Arina only got an ear and sinus infection. Jax kept going up and up on his oxygen needs, up to 10 liters. Respirations in the 60's, all this on the vent. Monday the 6th we took him to Pulmonology. She kept telling me he needed to be admitted and I kept resisting. I hate admitting him if he doesn't need IV fluids or meds, and his oxygen levels are doable at home. But I lost the battle, and we were sent to the er to wait for an open picu bed. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFu9uOWcjEgZhh7Ssvkc0VUMJzn5M7qsAlIjpDC_h5hj5HvcuTTrfkgtHhzhBENI5qcni6E64AyFZ2aXfEyLqOG6A-UVnZ57zCu2FUv4tLRPr1eMq9UOK_SD4W7OQZxQpUqTjUPoO5FCf5/s640/blogger-image-1735752159.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFu9uOWcjEgZhh7Ssvkc0VUMJzn5M7qsAlIjpDC_h5hj5HvcuTTrfkgtHhzhBENI5qcni6E64AyFZ2aXfEyLqOG6A-UVnZ57zCu2FUv4tLRPr1eMq9UOK_SD4W7OQZxQpUqTjUPoO5FCf5/s640/blogger-image-1735752159.jpg"></a></div><br></div><div>While in the ER he tanked on us. His blood gas was bad and his color was grey. He was put on the more powerful hospital servo ventilator and his rate and peep settings were increased.</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU2r4AQvvaKZiVGCQAmxxfwyCLIoPFTxA5iLI-hmduFT4jY1CnmOXyp661SJ_m88AzRiYP19es5Dr15CPvFvybG96QRN3XbUPBpBMsk45NELf8YVmTCutpfRGAiGNu0zQ94xpJSMMhIR1k/s640/blogger-image-393030290.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU2r4AQvvaKZiVGCQAmxxfwyCLIoPFTxA5iLI-hmduFT4jY1CnmOXyp661SJ_m88AzRiYP19es5Dr15CPvFvybG96QRN3XbUPBpBMsk45NELf8YVmTCutpfRGAiGNu0zQ94xpJSMMhIR1k/s640/blogger-image-393030290.jpg"></a></div><br></div><div>While in the hospital we got the results that showed rsv. Of course pneumonia thrown in there and his x ray was awful! The x ray on the right was when he was sick in feb. The one on the left was that day. Almost a complete whiteout. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGrRFEeeaUgNeE5RW97t4tPDzYY0ZrJAQ4QpO1Hve96HXh6o0qF-1VVmLOS20tGkTAxY3z0mNf-wcQyJYVvgbEtJHQG01qxnUBjtXY7AWLzhQs1Zp2Ep4Rbe2CFglmE8hK_dFxiawEfdZO/s640/blogger-image--589353854.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGrRFEeeaUgNeE5RW97t4tPDzYY0ZrJAQ4QpO1Hve96HXh6o0qF-1VVmLOS20tGkTAxY3z0mNf-wcQyJYVvgbEtJHQG01qxnUBjtXY7AWLzhQs1Zp2Ep4Rbe2CFglmE8hK_dFxiawEfdZO/s640/blogger-image--589353854.jpg"></a></div><br></div><div>After a couple days he was transitioned back to his home vent and home settings. </div><div>We also found out during this stay that his port is not fixable and will be replaced after his respiratory status is good. We also found out that after 7 years, we may be able to come off lovenox shots! He will always have his clotting disorder, but since he has no new or active clots, aspirin should be enough to prevent new clots from forming. It will be so nice not to have to poke my sweet boy twice a day anymore!</div><div>I think I'm going to douse my home in Lysol, and keep my fingers crossed that we are done with the sickies for a while!</div><div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj66CobXbHYCahEyU-RY9I5Qg0H2YRnpGJUi8tPTSnJgJNxQMRRlK2tlc3ywPMROYDssYutR1nJur2N0khkqKs07KsHEb0EenHp65KBm5kevRLU-lXDNw5PAg-WDCDehgg8putHu5T15jmu/s640/blogger-image--1579555179.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj66CobXbHYCahEyU-RY9I5Qg0H2YRnpGJUi8tPTSnJgJNxQMRRlK2tlc3ywPMROYDssYutR1nJur2N0khkqKs07KsHEb0EenHp65KBm5kevRLU-lXDNw5PAg-WDCDehgg8putHu5T15jmu/s640/blogger-image--1579555179.jpg"></a></div><br></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com2tag:blogger.com,1999:blog-2212485478080287079.post-57340062252808772132015-03-20T11:08:00.001-06:002015-03-20T11:08:33.840-06:00Hoarding, buried alive!<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCwd0sJnViJxyfk2hHHzQeGo5dzcyTwF-WGyDMrlAviUQC0wCDZQcbDaNxNGLjWKuNa9hlInqNBupY6m6lOLouxmOVQMuhE80zmJpcKXT1UgjA50P3dKYrI3nqhnwdSV-TbzYvRNkry0RB/s640/blogger-image-1680326453.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCwd0sJnViJxyfk2hHHzQeGo5dzcyTwF-WGyDMrlAviUQC0wCDZQcbDaNxNGLjWKuNa9hlInqNBupY6m6lOLouxmOVQMuhE80zmJpcKXT1UgjA50P3dKYrI3nqhnwdSV-TbzYvRNkry0RB/s640/blogger-image-1680326453.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I am a supply hoarder! </div><div class="separator" style="clear: both;">And I am probably not the first person to be extremely proud to own that title!</div><div class="separator" style="clear: both;">The reason I'm so proud is my hoarding has saved us a lot of money, time in a hospital, and quite possibly Jax health.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDL9rrrtKL8dJOQp9faH16-As87SQK-b0Q7deAm7W18oHbnjh4dZIGxDT_jOtxyOu18VdScXLJNJgdzlfbkdiQxQju7npBRYbQ24fUg_qAvYkaT_oK8SMxk6gQBrlRsIP8E2kubJGYoxFb/s640/blogger-image-483223991.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDL9rrrtKL8dJOQp9faH16-As87SQK-b0Q7deAm7W18oHbnjh4dZIGxDT_jOtxyOu18VdScXLJNJgdzlfbkdiQxQju7npBRYbQ24fUg_qAvYkaT_oK8SMxk6gQBrlRsIP8E2kubJGYoxFb/s640/blogger-image-483223991.jpg"></a></div><br></div><div class="separator" style="clear: both;">Besides Jax two sets of shelves in his bedroom, I have supplies stashed....</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDA6bfVdilkiHgC0WkOJicG_wDB8viV-Q0uA-meAz6fhNo480fIrOZLTQkqu_cZZOYnUvmCgJkf6jDYOI3gBPd8NspA1NpKdDEj-Uc8M4qica-e3CnXUr7iM9k0Rs_ZNHEFYtN5XC8sjjZ/s640/blogger-image--490070402.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDA6bfVdilkiHgC0WkOJicG_wDB8viV-Q0uA-meAz6fhNo480fIrOZLTQkqu_cZZOYnUvmCgJkf6jDYOI3gBPd8NspA1NpKdDEj-Uc8M4qica-e3CnXUr7iM9k0Rs_ZNHEFYtN5XC8sjjZ/s640/blogger-image--490070402.jpg"></a></div><br></div><div class="separator" style="clear: both;">In every closet....</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnLdJ2-tjvX_iuMr8Inszp68MwJiptMmDLDNcJCdhB6rJg-WNqGtSjbtTpOoK9szNAwEy5w7FFwixjUSsOl-cv_gAKFS3CIOnHOZl9IKQ2GBQCzsshsaUEEjjaJL6lbWlgv6i2PTr9oFhn/s640/blogger-image-980644747.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnLdJ2-tjvX_iuMr8Inszp68MwJiptMmDLDNcJCdhB6rJg-WNqGtSjbtTpOoK9szNAwEy5w7FFwixjUSsOl-cv_gAKFS3CIOnHOZl9IKQ2GBQCzsshsaUEEjjaJL6lbWlgv6i2PTr9oFhn/s640/blogger-image-980644747.jpg"></a></div><br></div><div class="separator" style="clear: both;">And every small space available!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We are a month behind our trach/vent supplies. 4 weeks we haven't received a thing. </div><div class="separator" style="clear: both;">Jax has technically three insurances, yet our home care company still can't pull their head out and figure out how to bill our supplies to his primary insurance, so they just stopped sending them! It doesn't matter how much coverage you have, things still get denied. There are many things We have to fight for and still can't get our hands on, things Jax needs.</div><div class="separator" style="clear: both;">We are hoping we finally have the right authorization sent, but who knows how long it will take to process. </div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Lucky for me I hoard!</span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;">Because this little man deserves everything he needs to thrive!! </div><div class="separator" style="clear: both;">Even if that means being buried in supplies!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBjvH95A_zg2b8EQlmTIWEPrUqS3_PU9VAYT4kcfR_M4l5Z6bfM0F68ykGE8QIf3siZegKXqeyWfqXZdh6SH_oHEE7ZHZfnIESTkO8MI6XWjN06vAY3HeuaVTxNYXoCv05gEvYWuSB5YwP/s640/blogger-image--1593504698.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBjvH95A_zg2b8EQlmTIWEPrUqS3_PU9VAYT4kcfR_M4l5Z6bfM0F68ykGE8QIf3siZegKXqeyWfqXZdh6SH_oHEE7ZHZfnIESTkO8MI6XWjN06vAY3HeuaVTxNYXoCv05gEvYWuSB5YwP/s640/blogger-image--1593504698.jpg"></a></div><br></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com1tag:blogger.com,1999:blog-2212485478080287079.post-76156346832792118152015-03-12T22:54:00.001-06:002015-03-12T22:54:33.719-06:00Birth family update!I feel like I left everyone hanging with our story of finding Arinas birth family. <div><br><div>Well it was indeed them! </div><div><br></div></div><div>Her parents were so excited to see pictures and know that she had a family. Her mom says she was so upset, but they couldn't care for a child with special needs. She said she was depressed for a long time and that there's not a day that goes by that they don't think of her. We sent them a bunch of pictures, and we got pictures of her little brother.</div><div>Is this not the spitting image of our princess? From the blue eyes to the flat nose!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfcYXxzKDYmm6Yf5RwcIU__rTQKdU8DOCqRFbTPLBZYkWcUFMhUiUFuhG82aqX2nJHH79xmIpalaZCpgvSXlEmjP8OTdEWNvIgE0WNycl0yO-NAe1DWX_YOSGp7nODQLiQQjIGzn_lUKsG/s640/blogger-image-1605000794.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfcYXxzKDYmm6Yf5RwcIU__rTQKdU8DOCqRFbTPLBZYkWcUFMhUiUFuhG82aqX2nJHH79xmIpalaZCpgvSXlEmjP8OTdEWNvIgE0WNycl0yO-NAe1DWX_YOSGp7nODQLiQQjIGzn_lUKsG/s640/blogger-image-1605000794.jpg"></a></div><br></div><div>Her family is sending us a package, and we are getting a package together to send to them, including something special from Disneyland for her little brother! </div><div>We are so excited to have a relationship with them! It's another great way to keep Arinas roots in her life!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8ihDF2IF_dpTyezzYj4fwzMTJPjPAkikbsAK3UkcLto_71TzIeJXvVKvP1TlcVj6GU_0-G9nXCDH9jtw8117BwGIBjSta-jpXY4lMoB6NPY56tPghraUTkQAHC-nOuPbdD9HNHuO78mOo/s640/blogger-image-1711013634.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8ihDF2IF_dpTyezzYj4fwzMTJPjPAkikbsAK3UkcLto_71TzIeJXvVKvP1TlcVj6GU_0-G9nXCDH9jtw8117BwGIBjSta-jpXY4lMoB6NPY56tPghraUTkQAHC-nOuPbdD9HNHuO78mOo/s640/blogger-image-1711013634.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcC1u9OUVA1e_SBL9hA4CqQD9L6W1TzK_QECfJtD8OUZcS4JJeLBS1pfBsw-AJfN14Y1XQ2n8F9NK_vrCNVe09zq0X8nz9OVPXynU4k9aMMaMkV3K7bFy7idT-uOiTCXPUc46xAK1PxUgv/s640/blogger-image-1374647698.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcC1u9OUVA1e_SBL9hA4CqQD9L6W1TzK_QECfJtD8OUZcS4JJeLBS1pfBsw-AJfN14Y1XQ2n8F9NK_vrCNVe09zq0X8nz9OVPXynU4k9aMMaMkV3K7bFy7idT-uOiTCXPUc46xAK1PxUgv/s640/blogger-image-1374647698.jpg"></a></div><br></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com3tag:blogger.com,1999:blog-2212485478080287079.post-18405213448336894422015-02-26T20:05:00.001-07:002015-02-26T20:05:40.542-07:00Sickie mcsickies!Jax has been super super sick and I haven't had time to update his facebook page, let alone the blog.<div>The crazy thing is it was a simple Trach bug, that kids with trachs get all the time. But this time it went into his lungs and caused pneumonia. He acted totally fine, like he normally does with tracheitis, but his oxygen need was getting higher and higher and his work of breathing and respirations were too. We hit the ER only because pulmo couldn't get him into clinic, and we needed tests. I didn't feel like he needed to be admitted, he wasn't so sick I couldn't do it at home. He was tolerating feeds, and I had all the respiratory support at home. But I lost the fight to go home. He is known to have drug resistant bugs, so he was started on two new IV antibiotics. Because they were new they wanted to make sure he didn't react to them, we had to stay. So we spent 5 days inpatient that could have been spent at home. He was on 4-5 liters the whole time, and that is totally doable at home.</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU5TkXuwi9MBqY0cChLhR8r4mymg6uZ-l5E91ZaL5A3DaPYq00uJfxBGFMkMd45Qwm2waOwx4bEjQBPnxH8gvXCbUGMVnDYXjqXXx_7ZX42G-VcUdaruxMvFfQPRwzH3wcV6-y4Is6QofQ/s640/blogger-image--1936038690.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU5TkXuwi9MBqY0cChLhR8r4mymg6uZ-l5E91ZaL5A3DaPYq00uJfxBGFMkMd45Qwm2waOwx4bEjQBPnxH8gvXCbUGMVnDYXjqXXx_7ZX42G-VcUdaruxMvFfQPRwzH3wcV6-y4Is6QofQ/s640/blogger-image--1936038690.jpg"></a></div><br></div><div>But Friday on the way home from the hospital he don't tolerate the car ride well. He coughed and coughed and desatted. I got stuck in traffic when there was a fire on the freeway. I was over in the toll lanes and couldn't pull over. His sats kept dropping and I finally had to call 911. They helped me find a pull out on the left, and a CHP officer drove me down the shoulder past the accident so I could just get him home, once I got his oxygen back up. The officer was fantastic!</div><div>After we got home he just tanked! His oxygen need went up to ten liters, which is as high as I can go at home. Even on the ventilator he was breathing around 60, which is crazy for him. Pulmo didn't want to admit him if at all possible because they hospital is crawling with rsv and the flu. Since he didn't have either we didn't want to add that to the mix. </div><div><br></div><div>Sunday night I was out at Disneyland with a girlfriend that was visiting from out of town. I got a phone call from tanner that jax had a grand mal seizure and wasn't breathing. Mondo called 911 while Ray ruscesitated Jax. Disneyland is literally ten minutes from Jax hospital, but the paramedics thought Loma Linda was closer. I told them over the phone no, it's not closer, that I didn't want him there and I wanted him at choc where the docs knew him. </div><div>So instead of being right by the hospital I had to drive 45 minutes to get to my son! </div><div>Then I almost punched the security guard when he thought I was going to wait in line at the ER when my son was brought in not breathing! Not going to happen!</div><div>When I got there he was passed out cold. Versed had stopped the seizure.</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmmG5ySyiM6TOtQgSG3IWpSBkHZkEenSjR3UTmM6Ke3P_bXgWN4u4AHL3PGJ-uy9a5PbeLXTLOC4L7hZUZ0-Ur4vLhMT5SA3COwVtrivpoCdrfAT5grHQawSGnmIW59Neq9owgOhOQIV_4/s640/blogger-image--567620096.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmmG5ySyiM6TOtQgSG3IWpSBkHZkEenSjR3UTmM6Ke3P_bXgWN4u4AHL3PGJ-uy9a5PbeLXTLOC4L7hZUZ0-Ur4vLhMT5SA3COwVtrivpoCdrfAT5grHQawSGnmIW59Neq9owgOhOQIV_4/s640/blogger-image--567620096.jpg"></a></div><br></div><div>We have no idea why jax had the seizure. Out of all the seizures Jax has, he has never had a grand mal that made him arrest. Never!</div><div>Since I wasn't home I can't speculate on what happened first. Being sick can lower your threshold with seizures, but I still would never have imagined he'd have a seizure like this!</div><div>Now over a week later he is finally almost back to baseline. </div><div>What worries us is how sick he got from a small bug. He's never been that sick from tracheitis before. It has us </div><div>really worried about the bigger bugs like rsv, which is still running rampant here! So we are just being super cautious with our fragile little warrior boy! We have to keep him healthy and happy!!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyZj8bb_pQToh60-G6Fx943QaUxWvEtVNXszVFf4QOzQhnE25XgFfz2qwAYWY4G6g3SVG254WeieaDJyvg0syTaTM3wJ0RdzVvAgRA2o3xjw4py0LwsIc0OOIoIiTeVnEdwtygjXVL0XvT/s640/blogger-image--2076971885.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyZj8bb_pQToh60-G6Fx943QaUxWvEtVNXszVFf4QOzQhnE25XgFfz2qwAYWY4G6g3SVG254WeieaDJyvg0syTaTM3wJ0RdzVvAgRA2o3xjw4py0LwsIc0OOIoIiTeVnEdwtygjXVL0XvT/s640/blogger-image--2076971885.jpg"></a></div><br></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com2tag:blogger.com,1999:blog-2212485478080287079.post-45529622920793033552015-01-10T09:08:00.001-07:002015-01-10T09:08:03.195-07:00We have found Arina's birth parents!Well we haven't verified it yet, but she is from a very small village. That name in that village could only be them. Not to mention there is a younger brother that is the spitting image of Arina with the same big blue eyes.<div><br><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge0MDFfndjugtVb-uZDC-hUHaY_sRUwu7fbe8KOehl7_xicX99ftBauIOpq6EAkjjaDT4Cnw3kIp1cm-wU9c1O6IbJm1Jf3PQfVA3F4YzE_h5WCqbGRs0qcwL4j4cPaHVf7KN9OK52tQ_V/s640/blogger-image--1891850274.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge0MDFfndjugtVb-uZDC-hUHaY_sRUwu7fbe8KOehl7_xicX99ftBauIOpq6EAkjjaDT4Cnw3kIp1cm-wU9c1O6IbJm1Jf3PQfVA3F4YzE_h5WCqbGRs0qcwL4j4cPaHVf7KN9OK52tQ_V/s640/blogger-image--1891850274.jpg"></a></div><br></div></div><div>We have a dear friend Ellen, and she is from Ukraine. We met her at cvs where she has been helping us with the chaos that can be Jax medications for three years. Her mother even came to America to visit and brought Arina a bunch of Ukrainian gifts! </div><div>Last night Ellen and I were talking about Arina's birth parents. She is a little more harsh than me, saying she thinks its horrible that they gave her up! I feel like they didn't know any better. This is how their very small village is. If she had any major medical problems they wouldn't have anywhere to take her. The nearest hospital was in the city the orphanage was in, Cherkasy, 2 hours away.</div><div>But Ellen was able to find her father in a Russian Facebook page. There she found the pictures, which I can't post because we do not have permission. The bad part is we don't even think they have a computer. Last time he was online was in Oct. 2013! But our super sleuth Ellen found some relatives in his friends list and contacted a cousin. She is trying to get her to tell him to get online. I'm really hoping they would like to see pictures of her now, and would like to get to know us. But I'll understand if they don't want to get involved.</div><div>I have mixed emotions now that I've found them. I've always truly thought that they loved her. But they were young, and scared into giving her up by the hospital staff. I see this little brother and think, oh my gosh, Arina has 5 brothers! It's all a bit surreal, and I hope it turns out to be a great thing, finding them. And that they will be amazed at what a beautiful little girl she has become!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtyFqpdpQfnMHu5SlGRCcH8I4SBVo7tDbN_MtCa0Tjlsrw6nrEPE77ehQl2RdLgWU_DdS9hxPqfhbFpiNHxGYJHh_Jl7d7BV7P5da0bZ09ASKA0vO4XAKOyppBefN2_hJCyn7Dc1zVwQ0H/s640/blogger-image--782779392.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtyFqpdpQfnMHu5SlGRCcH8I4SBVo7tDbN_MtCa0Tjlsrw6nrEPE77ehQl2RdLgWU_DdS9hxPqfhbFpiNHxGYJHh_Jl7d7BV7P5da0bZ09ASKA0vO4XAKOyppBefN2_hJCyn7Dc1zVwQ0H/s640/blogger-image--782779392.jpg"></a></div><br></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com4tag:blogger.com,1999:blog-2212485478080287079.post-70614474736532159492014-12-31T16:47:00.001-07:002014-12-31T16:47:22.115-07:00A new year coming!Ok I swear swear swear I'm going to try and post once a week! That is my New Years resolution!<div>Things have been quiet around here, which is a good thing in the medically fragile life! In August we switched home nursing companies and finally got a great nurse! She currently works three days a week and we love her! </div><div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3tQnp60SLmfhcUy0WwewwlcgSzLg4p3zVv4z8oe5pXyuOrqFaMSgPSzAzlzcuRjnXmwmpNmo6SXnqXUCGHr3hqILBqIxl0U8gPRx1U7E-TWrndGjUvjTy9JDOTzeRVcYF22rCLeQfUdPs/s640/blogger-image-1639738001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3tQnp60SLmfhcUy0WwewwlcgSzLg4p3zVv4z8oe5pXyuOrqFaMSgPSzAzlzcuRjnXmwmpNmo6SXnqXUCGHr3hqILBqIxl0U8gPRx1U7E-TWrndGjUvjTy9JDOTzeRVcYF22rCLeQfUdPs/s640/blogger-image-1639738001.jpg"></a></div></div><div><br></div><div>It's a good thing because in February, this Mommy is starting school! Yep, I'm finally digging in and going back to finish nursing school. Big things will be happening this year, and I feel like its the beginning of amazing things! Daddy will become the stay at home parent, and when I'm working we will finally be able to buy our dream home that will be Jax friendly! And then we hope to adopt one more girly to our home, and give Arina a sister!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQX2cJKSHQUZwgQkDiyh0b4rC9rXAbs32ji892hMYL5jHuWVGwCpbJc26scLSq3Ibx45vAFAFSqwqot19jlrjtNfn9TX7EoJ5BbBu3IU2lDLcl-8SU6KbWGADrWWgc5BhASdnxB5HCzQdG/s640/blogger-image-259203434.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQX2cJKSHQUZwgQkDiyh0b4rC9rXAbs32ji892hMYL5jHuWVGwCpbJc26scLSq3Ibx45vAFAFSqwqot19jlrjtNfn9TX7EoJ5BbBu3IU2lDLcl-8SU6KbWGADrWWgc5BhASdnxB5HCzQdG/s640/blogger-image-259203434.jpg"></a></div> </div><div>Jax has been doing good too! We are celebrating no unplanned hospital stays in 2014! We had a few overnighters for various adjustments, but no big unplanned stays! He still has big problems with vomiting and blood in his g tube, but we don't know why and it hasn't really gotten worse. He can't have carafate, which really helps his stomach, because it clogs his g tube. If his g tube can't drain he vomits more, so it's a hard thing to juggle. Respiratory-wise he is still on higher oxygen needs than he used to be, but we're just thinking this is a new normal. Since there is no significant change in his heart function. Those lungs have taken more than a couple of nasty beatings in 9 years, and their going to be finicky! </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPC4BDHlgiCmJyoPrmunIihqXCXTQQd7MoXTPMu-Bd93rW17drDgygzDu7PBhwa8NwaQPWvuwZyv-A3sPySWVGtGpDoWb5qg7Q8I5tXVFY_uMWOTGXUHWEMGC-CHh4AFlvlir0TDqihnJK/s640/blogger-image-474810181.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPC4BDHlgiCmJyoPrmunIihqXCXTQQd7MoXTPMu-Bd93rW17drDgygzDu7PBhwa8NwaQPWvuwZyv-A3sPySWVGtGpDoWb5qg7Q8I5tXVFY_uMWOTGXUHWEMGC-CHh4AFlvlir0TDqihnJK/s640/blogger-image-474810181.jpg"></a></div><br></div><div>We hope you all had a great year, and here's to an amazing 2015!!!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkqprXm3m2UlMctYQUCKTTgbn_1z0md7gV0fY57xvSSxjuEiGDj6RSUeaZ-C9aVviuDvXndRztOMxFfDvuTvkCBRNg04h4XKM6DrmrgqwyT83ts8dgefm_bKmtvrCgE5BeTYljD9-jLGIJ/s640/blogger-image--1602449351.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkqprXm3m2UlMctYQUCKTTgbn_1z0md7gV0fY57xvSSxjuEiGDj6RSUeaZ-C9aVviuDvXndRztOMxFfDvuTvkCBRNg04h4XKM6DrmrgqwyT83ts8dgefm_bKmtvrCgE5BeTYljD9-jLGIJ/s640/blogger-image--1602449351.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIueVny2q1ku0bbY5ni33zf-6qDC6a6gX-FLeKnFr6Gnt-cT6blLQkxfUsjf8n72ZClgY15Ir0oLksyC2pWfFj7dQqKJ0TJcImv0wfAZZpiAvapsVMEzviwTP1gr110k2Q5705qYa9Q7qZ/s640/blogger-image--1547236251.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIueVny2q1ku0bbY5ni33zf-6qDC6a6gX-FLeKnFr6Gnt-cT6blLQkxfUsjf8n72ZClgY15Ir0oLksyC2pWfFj7dQqKJ0TJcImv0wfAZZpiAvapsVMEzviwTP1gr110k2Q5705qYa9Q7qZ/s640/blogger-image--1547236251.jpg"></a></div><br></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com3tag:blogger.com,1999:blog-2212485478080287079.post-78217984652540810572014-08-26T10:34:00.001-06:002014-08-26T10:34:21.006-06:00Back to school<div class="separator" style="clear: both;"><br></div>I promise I'm going to try and keep the blog updated at least once a week! <div>But since I was here last we have moved, carter started on a travel ball baseball team, and the kids have started school! </div><div><br></div><div>Travel ball is a competitive baseball team. That also means its a lot of work and commitment! Carter and daddy are both having a great time with it though! </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisHZdXQ_JL1z4hDZLG3DMesOpQjHdvVjrpR9BnYeFfSHUV6raWmTokplQTm3cCY-9JeACIEKTshjeL5puS3NAqgolZV3unZXTuQJUO65lt19inpwL-ayCBqSqUU7V7wdwB5vdlZf9ibtrd/s640/blogger-image--1188312118.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisHZdXQ_JL1z4hDZLG3DMesOpQjHdvVjrpR9BnYeFfSHUV6raWmTokplQTm3cCY-9JeACIEKTshjeL5puS3NAqgolZV3unZXTuQJUO65lt19inpwL-ayCBqSqUU7V7wdwB5vdlZf9ibtrd/s640/blogger-image--1188312118.jpg"></a></div><br></div><div>School is insane because I now have 4 kids in 4 different schools that all start around the same time! I have to get the three older boys to school and back home in time for Arinas bus to come at 7:18. It's absolutely crazy! Jax hasn't started school yet because its a lot more work to get him ready. He will go two days a week for a half day. The good thing is he will go to the same school as Arina and they will ride the bus together. we switched nursing companies and have a new nurse that has worked a few shifts now. We really like her, and she will go to school with Jax!</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf8rIacpvUj1zvN1boVtP7puYRbfjYloJhavExzS-WzC0LwVIhcb_IpF4zusez3dR5aSkZ6de3EtF2p_fxjM3h6R0X2QPddlg68uQIWjKHD1aV6-ah1eWtC09T-aGq-TTgQki1QA4n5HRd/s640/blogger-image-2066924414.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf8rIacpvUj1zvN1boVtP7puYRbfjYloJhavExzS-WzC0LwVIhcb_IpF4zusez3dR5aSkZ6de3EtF2p_fxjM3h6R0X2QPddlg68uQIWjKHD1aV6-ah1eWtC09T-aGq-TTgQki1QA4n5HRd/s640/blogger-image-2066924414.jpg"></a></div><br></div><div>Because of the crazy school schedule I came up with a way to get lunches ready quick. I have a cold and pantry bucket, with multiple lunch items. I have the boys grab a few things out of each bucket, and lunch is done! I just don't have time to make their lunches and get everyone else ready to go, now that Arina goes in the morning as well.</div><div>It's worked out really great so far!</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdM-D26_mEK2S-isjxb1cUyoyzmVEKUH1DGsQj2HQ7IQ7krqd5mgvLdqHe6UJXEDSDmnGB7wlwWP9h0hVzM6suqmrt05_GvNLaU66Kbk4Fm9EEh_WwNxYAtoOpjEOvDWltKxHJS9FwIPh9/s640/blogger-image--1934418144.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdM-D26_mEK2S-isjxb1cUyoyzmVEKUH1DGsQj2HQ7IQ7krqd5mgvLdqHe6UJXEDSDmnGB7wlwWP9h0hVzM6suqmrt05_GvNLaU66Kbk4Fm9EEh_WwNxYAtoOpjEOvDWltKxHJS9FwIPh9/s640/blogger-image--1934418144.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5VGd6MW_xer2T21fMMn3VMbW8tKeFPq0FIRdXU383C5d5oj6nfsmi43m-KtRYfWiC9lWqMBV5AEKVc2KPMKJ1k8kq8tmeCYbbfVYSw1TMPXBUlE6qZGxmvZZnb6ihJmVlq-Gwdt8Anv2F/s640/blogger-image-866861584.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5VGd6MW_xer2T21fMMn3VMbW8tKeFPq0FIRdXU383C5d5oj6nfsmi43m-KtRYfWiC9lWqMBV5AEKVc2KPMKJ1k8kq8tmeCYbbfVYSw1TMPXBUlE6qZGxmvZZnb6ihJmVlq-Gwdt8Anv2F/s640/blogger-image-866861584.jpg"></a></div><br></div><div>Overall we've been busy, but busy is how we like it! We're coming up to Arinas 5th birthday next month! We can hardly believe she's been home 4 years! Sometimes it feels like yesterday and other times it feels like I gave birth to her myself! She is now potty trained. It took a whole two weeks after she showed me she was totally ready! It was so fun to send her back to school in undies. She is such an amazing little princess!</div><div>Just loving life with my amazing family and friends!</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFZuyxH26ANyR0kyUBvwsvq-EROaxCe1hHPSiEFFfXOIHsDZW4azt2LPc2lRyh1w9dXOYqmAz_BzF9effDhsYA_AxJfQsfCLzvhpz4aQDAJYG11dXOpJIXkZBVgdmlfnblrLs7JNg7qf_L/s640/blogger-image--37456686.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFZuyxH26ANyR0kyUBvwsvq-EROaxCe1hHPSiEFFfXOIHsDZW4azt2LPc2lRyh1w9dXOYqmAz_BzF9effDhsYA_AxJfQsfCLzvhpz4aQDAJYG11dXOpJIXkZBVgdmlfnblrLs7JNg7qf_L/s640/blogger-image--37456686.jpg"></a></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVKb-RXJVMZROwkbCcOEguDcUfJoVkofw5W2Z-xfCCkD1oXmsVHyz34Kc2-Qkt_RJ9UY6vr65PugmmfF6twbIKCNiySa0eXQfwxziHCtiXxjQ8Gg80VIONM3d0tlmCR19T24y9JE_eIj0_/s640/blogger-image--900122791.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVKb-RXJVMZROwkbCcOEguDcUfJoVkofw5W2Z-xfCCkD1oXmsVHyz34Kc2-Qkt_RJ9UY6vr65PugmmfF6twbIKCNiySa0eXQfwxziHCtiXxjQ8Gg80VIONM3d0tlmCR19T24y9JE_eIj0_/s640/blogger-image--900122791.jpg"></a></div><br></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com5tag:blogger.com,1999:blog-2212485478080287079.post-5388959096863710512014-06-17T21:35:00.002-06:002014-06-17T21:35:42.652-06:00I'm so sorry to all of our blog readers! I've been a bad, bad blogger!<br />
<br />
Things are good around here! Crazy, but those who have 5 children tend to be a tad crazy! We found out right after my last blog that we had to move. We sold our home in Utah when we moved, and haven't been able to buy here in Cali yet, as prices are much higher! Finding a good home, with everything we need was not easy. And of course moving a 3000 square foot home is beyond stressful! <br />
But we have been moved about a week, and we are finally winding down and able to relax a bit!<br />
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Jax is doing good as well. He's had some tummy issues. Bleeding out of his g tube, lots of gagging and vomiting. This is causing respiratory issues because he aspirates every time he vomits, so he has been above baseline oxygen for a couple weeks now. We started Carafate, and that has been a wonder drug! No more bleeding, and I'm actually getting a lot less acid out of his g tube as well. I'm just hoping once the drug is stopped he continues to do well. <br />
He is having a new port placed on the 27th. We can't wait to have our access back. Blood draws have been a nightmare! We have labs that need to be done but we are holding out as long as possible to hopefully have our port back first!<br />
Still fighting the school with Jax. For some reason they have been really bad with getting him what he needs and deserves! Now that we have a nurse that we trust to send Jax to school with, we are anxious to give the classroom a try. We were supposed to amend his IEP so he could start extended school year last week. Now we are nearly halfway done with extended school year and still no IEP! Don't worry, I've just emailed the director of special ed, because I am at the end of my rope with them!<br />
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Arina is her crazy, princess self! She is starting to say more and more words! Now if we can just get her to put more than one word together! She thrives in school. She actually does better with her wandering and running at school than at home. She's escaped the house a few times, and now with all the baby locks its like Fort Knox around here! But at school she no longer needs someone to hold her hand outside. She follows the line and stays with her class. <br />
Just in the last few days we've also had some exciting potty experiences. She is pointing to her diaper, and when I plop her on the potty, she's gone three times for me! I think she's finally grasping the concept of what the potty is for! <br />
I can't believe how big she is getting! It seems like just yesterday we were taking her out of the orphanage. <br />
I am so blessed with my amazing babies and wonderful family and friends!!<br />
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Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com0tag:blogger.com,1999:blog-2212485478080287079.post-32066435864625872732014-04-04T13:25:00.001-06:002014-04-04T13:25:48.599-06:00<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Wow I've done it again, gone a couple week without a single blog post! </span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We are just having too much fun in the sunshine year round we have here in SoCal! Man I could never give up this weather now that I've had it! </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Sunday we left Arina with one of our Disney friends, and Jax spent the afternoon at Auntie boo's. That meant some free time with the older boys, in which we hit Universal studios. It was a madhouse! I've never seen universal so busy! Busier than Disneyland! 70+ minute wait on every ride. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We got a new pound puppy yesterday. It will be nice to have a furry companion back, and we hope to have her trained as a service dog for both littles. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Everyone have a great week, we are still on spring break here!</span></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgptHlwzI6ANpD4R999FEC2iQrD7g4p6hLkQUOSsMXKdi1lOg2ytTWknl5vNacuFtMyPE611lr4EMWh0u8-dKewm6Rc5rqOYZ9GTBSWA4CdicIao1Rw9bxQnybrTK2GNy4WEwRNd6iQetgC/s640/blogger-image--510216232.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgptHlwzI6ANpD4R999FEC2iQrD7g4p6hLkQUOSsMXKdi1lOg2ytTWknl5vNacuFtMyPE611lr4EMWh0u8-dKewm6Rc5rqOYZ9GTBSWA4CdicIao1Rw9bxQnybrTK2GNy4WEwRNd6iQetgC/s640/blogger-image--510216232.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqPtO31WGwQSyzYrljB-EYYSdEO7mvg63TeNHy6Abl05qLiw5txE1A85q0iQDUNFAl9eSmmPMAv5833DtUwVoAWgTarx5rOn57_aSYjCMsdvLX4KPP7vbWrnCOnjt5V-B6vR2UF_6QkBdN/s640/blogger-image--1306516900.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqPtO31WGwQSyzYrljB-EYYSdEO7mvg63TeNHy6Abl05qLiw5txE1A85q0iQDUNFAl9eSmmPMAv5833DtUwVoAWgTarx5rOn57_aSYjCMsdvLX4KPP7vbWrnCOnjt5V-B6vR2UF_6QkBdN/s640/blogger-image--1306516900.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTfpcKGOibaPZ-9sABs13fQ3huBkrBCWcb5LfBv-mQRh_WJv8nIg-Wgv6AcL2-yuWdCFxOEKrKK94eCcysL6okS0TecAwgEzL8NUaGy-fkahpALadWmji29h4KgiKRniefluos3TLweIiG/s640/blogger-image-1933023642.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTfpcKGOibaPZ-9sABs13fQ3huBkrBCWcb5LfBv-mQRh_WJv8nIg-Wgv6AcL2-yuWdCFxOEKrKK94eCcysL6okS0TecAwgEzL8NUaGy-fkahpALadWmji29h4KgiKRniefluos3TLweIiG/s640/blogger-image-1933023642.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com0tag:blogger.com,1999:blog-2212485478080287079.post-27568219868670259192014-03-08T14:05:00.001-07:002014-03-08T14:05:11.895-07:00Saying goodbye is always hard!<div class="separator" style="clear: both;">Yesterday we had to say goodbye to our beloved Reggie! </div><div class="separator" style="clear: both;"><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK-ExoZURvg1nrYilfSH2PLzrGPB62UEZRlg79OppmjDTvAG-VFnCy03HCN1ul5TFmZEkYDdoDxt46wRneZfWVi2nDNYuSJ8N92OYxFhfPPdufZBDL8IIGgegJd0GL7PZ8xiFKBXi-r8XH/s640/blogger-image-576949321.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK-ExoZURvg1nrYilfSH2PLzrGPB62UEZRlg79OppmjDTvAG-VFnCy03HCN1ul5TFmZEkYDdoDxt46wRneZfWVi2nDNYuSJ8N92OYxFhfPPdufZBDL8IIGgegJd0GL7PZ8xiFKBXi-r8XH/s640/blogger-image-576949321.jpg"></a></div><br></div><div>All the boys have had Reggie since they could remember. Mondo is the only one that had life before him. </div><div>He was 13, a Shepard/chow mix. A pound puppy, he was amazing! No other dog will ever compare. He was gentle with everyone, but protected when he had to. He chased a burglar out of our garage one morning. </div><div>He had not ben eating well for a couple months. I bought him softer food, knowing he is getting older. But two days ago he stopped eating completely. He had lost a lot of weight, so I took him in yesterday. His teeth looked ok, so we knew it wasn't that making him not eat. The only way to tell for sure was 600 dollars worth of testing. That would only show us what it was, not treat it. And treating a 13 year old dog for cancer or organ failure would be cruel. So we decided the best thing for him was to put him down. </div><div>The boys were all there, and it was heartbreaking! They are making us a mold of his paw, and the boys kept his collar and tags. </div><div>This morning it was so hard to go out back and not have him wagging his tail, greeting me at the door. </div><div>We'll miss our friend, love you forever Reggie!!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIbNn883cJFzQKeuEfNNCnC5KckcUNQ8Iymf3z3RhyphenhyphenHlD7vOjFwPVzhus1P7Ao0tP_cV0Ta2NdYkKePh9trC3DkBSgEEklv2oSlLEWK4dRJqZREwk9MfLzvvvYGgDEEllrewxMQeqVT-ps/s640/blogger-image--341584511.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIbNn883cJFzQKeuEfNNCnC5KckcUNQ8Iymf3z3RhyphenhyphenHlD7vOjFwPVzhus1P7Ao0tP_cV0Ta2NdYkKePh9trC3DkBSgEEklv2oSlLEWK4dRJqZREwk9MfLzvvvYGgDEEllrewxMQeqVT-ps/s640/blogger-image--341584511.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdJYbTit8KJf1p3pUKrfQEclNzHQvGw23OvD0Fc8neG4W6yx-bkAb3dd8HZqjKXKSTNbrVPzlMgjUPRgbh_q2SKIMkm7ZMgn3cBzWM7gnE1x3N2jmP3he1AUNXuU5Hk6dHlOOsx7VgKSEz/s640/blogger-image-1660443558.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdJYbTit8KJf1p3pUKrfQEclNzHQvGw23OvD0Fc8neG4W6yx-bkAb3dd8HZqjKXKSTNbrVPzlMgjUPRgbh_q2SKIMkm7ZMgn3cBzWM7gnE1x3N2jmP3he1AUNXuU5Hk6dHlOOsx7VgKSEz/s640/blogger-image-1660443558.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjopxvn9mNTVfRw-aOCZs_No7o8OBY0wXSKR388x3F5U5SCrm_5ZF70cjJ96jQMdJzWxIPCQWW3U5KyFq5aeqRDxaAqTX3f9Vk2g6FmoJikZdE5a-Llg5RpdbFV7YCFAA-1WNGvw-qvyDqN/s640/blogger-image-912490586.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjopxvn9mNTVfRw-aOCZs_No7o8OBY0wXSKR388x3F5U5SCrm_5ZF70cjJ96jQMdJzWxIPCQWW3U5KyFq5aeqRDxaAqTX3f9Vk2g6FmoJikZdE5a-Llg5RpdbFV7YCFAA-1WNGvw-qvyDqN/s640/blogger-image-912490586.jpg"></a></div><br></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com1tag:blogger.com,1999:blog-2212485478080287079.post-66013201891387695392014-03-04T22:15:00.000-07:002014-03-04T22:15:09.736-07:00<div style="text-align: center;">
<span style="font-size: large;">How come I can never go through with it? </span><br />
<span style="font-size: large;">How many times have I said I'm done blogging? </span><br />
<span style="font-size: large;">And I always change my mind!</span><br />
<span style="font-size: large;">Maybe its because I've met so many amazing people and kidos </span><br />
<span style="font-size: large;">through my blog!</span><br />
<span style="font-size: large;">Maybe its because I know you just can't get enough of these two!</span><br />
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<span style="font-size: large;">So I give in.....</span><br />
<span style="font-size: large;">we aren't going anywhere!</span><br />
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Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com8tag:blogger.com,1999:blog-2212485478080287079.post-79398489507943868112014-02-22T22:00:00.001-07:002014-02-22T22:00:22.195-07:00Bye bye blog!We are going to be shutting down our blog! After going back and forth for about a year now, I've decided finally its time! I originally wanted to keep it to print and use as a sort or keepsake book. But since I no longer post much, there's not much to "keep"<div>It will stay here long enough for me to print out the years from when we started, but I will no longer post here. If you want to keep following Jax, here is his Facebook page.</div><div>Facebook.com/jaxsonsfight</div><div><br></div><div>Thanks for the love and friendships for the last 5 years!</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj81dVexWTbH8BRUnaKY1yQrR-12RLDBIr2bxnIJeTxraiodvIrPew6yz1YI2ad5d3gPVf6VKl8tisur0WxgEeI9zKwtLnnYtiYKjy6qMp73FWLzzamwKpDfA9Sm0Wv0feNxd5IZDo39ssJ/s640/blogger-image-876075388.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj81dVexWTbH8BRUnaKY1yQrR-12RLDBIr2bxnIJeTxraiodvIrPew6yz1YI2ad5d3gPVf6VKl8tisur0WxgEeI9zKwtLnnYtiYKjy6qMp73FWLzzamwKpDfA9Sm0Wv0feNxd5IZDo39ssJ/s640/blogger-image-876075388.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqcjiV0hkFhRiFLNRFPRSdca33fn8OQdXdGUWhyphenhyphenrApfGz6P_lvJLnGq936XTPdTzlgot2zNbG7gQAS5iFZjxqcgXOTIB2H1iZMchNwZuLjXnhFkFXGha6558FZ3g2wCu8hpciNgtcPOFkZ/s640/blogger-image--1262112069.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqcjiV0hkFhRiFLNRFPRSdca33fn8OQdXdGUWhyphenhyphenrApfGz6P_lvJLnGq936XTPdTzlgot2zNbG7gQAS5iFZjxqcgXOTIB2H1iZMchNwZuLjXnhFkFXGha6558FZ3g2wCu8hpciNgtcPOFkZ/s640/blogger-image--1262112069.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com4tag:blogger.com,1999:blog-2212485478080287079.post-78379604559577845922014-02-11T10:05:00.001-07:002014-02-11T10:05:18.530-07:00Isolation and special needs!As I listen more and more to people saying that they lost friends after they had a child with special needs, or they are no longer getting phone calls to join friends for dinner or a party it made me sad! <div>I also thought, well that didn't happen to me! My good friends I had in high school I still talk to through Facebook, and get together maybe once a year. But then I realized that in my neighborhood, I never really made friends with the other moms. We waved and smiled, but no more than that. I never get invited to play dates, or to go out with other adults. I didn't think that much about it because I have so many new friends that are also moms of children with special needs! </div><div>As much as its nice to have all these new friends, it's heartbreaking to feel left out.</div><div>I imagine that having a friend your whole life and losing that friend because they can't handle, or just don't know what to say to you now, makes you feel horrible!</div><div>I would make a list of things to say or not say to a mom of a child with special needs, but I think those lists are ridiculous! We shouldn't expect our friends to know what to say, and I think that's why they are afraid to say anything! If they say something that seems horrible, or outdated, or ignorant, kindly correct them, and move on. I've had friends say they are afraid to ask questions, or make a comment for fear it will make that person angry. They shouldn't feel that way.</div><div>The only thing I do say, is don't be afraid of us or our children!</div><div>Just because instead of baby bottles on our counter, we have medical supplies..</div><div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeXP9vZ5kn3S0AU1yZN1k0KE32WKRKVx7vdiw3sYJFpazDLM0e_UVRCMANr4Ju0RO1at0oHOWHGZL8fy0Ni6GUuSyofBsPEWC6vEsgIfUHWNXCxGi1_1xK4pE-9QKC3TIA7YmvoB4A3M5B/s640/blogger-image--1554194643.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeXP9vZ5kn3S0AU1yZN1k0KE32WKRKVx7vdiw3sYJFpazDLM0e_UVRCMANr4Ju0RO1at0oHOWHGZL8fy0Ni6GUuSyofBsPEWC6vEsgIfUHWNXCxGi1_1xK4pE-9QKC3TIA7YmvoB4A3M5B/s640/blogger-image--1554194643.jpg"></a></div><div><br></div>We are still very much like you!</div><div><br></div><div>Just because instead of lots of toys in our child's bedroom, it's shelves and shelves of medical equipment..</div><div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpf24HqLAnYcC6QLey3LMFIg-mmUIhtDc4B7fh6Ut1xPBdABblbQCc3iStB2d4UDOWc9pjM99OZPDiWRy6UKTFv3k0dAO6d78yk_qxJ2Fl0Z18trd4Gy2uF7XqL1AiZwqDCIAZsGHtZRx1/s640/blogger-image--2124296205.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpf24HqLAnYcC6QLey3LMFIg-mmUIhtDc4B7fh6Ut1xPBdABblbQCc3iStB2d4UDOWc9pjM99OZPDiWRy6UKTFv3k0dAO6d78yk_qxJ2Fl0Z18trd4Gy2uF7XqL1AiZwqDCIAZsGHtZRx1/s640/blogger-image--2124296205.jpg"></a></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Doesn't mean we don't want to have play dates with other children!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I know as a friend looking in it seems scary. But please don't turn away! Our kids are just kids, and we want for them the same things you want for your children! And more than likely, the exposure to a child with special needs will make your child a much more compassionate, understanding person!</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFdGIx7QZE3RlMfdw0BXb7AAITVk8wyD4jYzkdX7ZL_gGgxCwXo-JxMbTZLSBkN9dCvLVl4dxEHJWbuWS6RrddRV2NKHIv9HI5yMVwzGtF5Zab5lXugU23k4kIblCKvtEYPR_yrBdSrlmR/s640/blogger-image--1109818998.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFdGIx7QZE3RlMfdw0BXb7AAITVk8wyD4jYzkdX7ZL_gGgxCwXo-JxMbTZLSBkN9dCvLVl4dxEHJWbuWS6RrddRV2NKHIv9HI5yMVwzGtF5Zab5lXugU23k4kIblCKvtEYPR_yrBdSrlmR/s640/blogger-image--1109818998.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com1tag:blogger.com,1999:blog-2212485478080287079.post-67969593281011392492014-01-28T17:41:00.001-07:002014-01-28T18:03:44.987-07:00Pray for Ukraine!Ukraine is in a battle for freedom right now! And no, it's not neo nazi activists! That's the most annoying comment I hear from people who just assume!<br />
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The people of Ukraine have been peacefully protesting their president and his decisions for two months now. They want to be free! They want to be out from under Russia's big bully umbrella! Then their government started attacking them! Making up new laws like you can't have a tent in public, and other outrageous reasons to arrest and beat innocent people! </div>
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They don't want our money, or our troops. They want us to help spread the word, and for the US to say they don't agree with what their president is doing, and urge him to step down. </div>
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This is stuff that we could very well be facing in our own future. Scary as it seems.</div>
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My husband and I still have friends in Ukraine that we talk to daily. We have a friend here that is from Ukraine. Her brother and family are still there. She fears for his safety as he wants to help his people gain their freedom! </div>
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I look at my baby girl, know that these are her relatives, and this is her home country. Luckily she has no idea what's going on, and we just hope for safety of the people, and for their president to step down and allow elections, which is what the people want! </div>
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Please watch this video, it's 3 minute of your life. It tells the story of what is happening. It brings me to tears. Seeing places I've walked, people I've talked to! </div>
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Just pray for Ukraine, and email the government to make a statement! How sad that our news is all about Justin beiber and his stupid mistakes! We are truly a messed up media!<br />
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Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com0tag:blogger.com,1999:blog-2212485478080287079.post-20134015165635841152014-01-20T21:12:00.001-07:002014-02-04T15:03:50.396-07:00She is her own advocate!<div align="center">
When you have a child with special needs, its always about advocate, advocate, advocate!</div>
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While that is a huge part of our lives, there is such thing as going overboard.</div>
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I know your thinking, no way!</div>
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But a mom of a 17 year old girl with DS in a group I'm a part of just left that group. </div>
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This is a mom that knows her stuff! After all, she's been doing this for 17 years.</div>
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She tried telling some other moms of young kids with Down syndrome that there is plenty of time to advocate, and still enjoy your child! That sometimes you have to just live life, because soon your child will also be 17. </div>
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This mom was ripped apart by these other moms! She was told she didn't advocate enough for her child. </div>
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Do you know how much your own child can advocate for themselves. How they can change peoples hearts and perceptions all on their own?</div>
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Of course that doesn't mean we don't need to advocate, but watching Arina the other night, I realized how much my 4 year old is her own little advocate.</div>
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We were at Disneyland, waiting for her beloved parade to start. Because she doesn't sit still long, she is usually walking up and down the parade route, waving and dancing, and pointing out any Disney souvenir someone may have!<br />
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But the last couple of parades she has been doing something new!<br />
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She walks down the row of people,<br />
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and hands out hug after hug!<br />
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After hug!<br />
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I have yet to see a person turn her away, or not have a huge smile on their face after interacting with my beautiful girl! <br />
Sometimes its fun to just let her do her thing!<br />
And you better believe that most of those people will remember that little girl at the parade, if Down syndrome is ever brought up with them again. Or maybe they are told their unborn baby will have Down syndrome. Hopefully they will remember her little face, and think that it may be alright!<br />
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Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com2tag:blogger.com,1999:blog-2212485478080287079.post-22353546869255291842014-01-15T22:12:00.001-07:002014-01-15T22:12:48.615-07:00Admiration<div class="separator" style="clear: both; text-align: center;">
Love and admiration</div>
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Big, bright eyes that tell such a story of strength!</div>
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I could keep him snuggled in the crook of my neck forever!</div>
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I can never get enough of this face!</div>
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<br />Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com5tag:blogger.com,1999:blog-2212485478080287079.post-8073470542424318442014-01-07T09:58:00.001-07:002014-01-07T09:58:49.151-07:00Being a sibling of a fragile child!As you can imagine, being the sibling to a medically fragile child is not easy! <div>There are many times they have to take a backseat. They have to go without seeing one parent, things they wanted to do have to be cancelled or changed because their brother is in the hospital. </div><div><br></div><div>When Jax was a baby Carter was 3. It was as if I had a job. I got up in the morning and took him to grandmas house while I went up to the hospital to be with Jax. Because Jax was in and out, Carter became very clingy to me. To this day he is the one that always wants to come with me if I go out!</div><div><br></div><div>In the last 8 years its just become life. Something you don't even think about. For years we've been taking each boy out about once a month for one on one time. We try to do it if there is something happening they like. The air shows and military museums for Mondo. A new superhero movie for Tanner. A baseball game for Carter. </div><div>Our whole experience in Utah made me really remember what our boys deal with! </div><div>In St. George when Jaxson was blue and we had to call for help, the boys didn't even blink. They ran out to flag down the firetrucks like the old pros they are! As I sat in the ER with Jax, waiting for life flight to come, the kids sat in the car, watching movies for 3 long hours! It was that or chase Arina around a crowded waiting room! She quickly fell asleep in the car. They missed a week of school when we had to drive back up to Utah. Then when they drove home with daddy, they had to get themselves up and off to school alone, because daddy had already left for work! </div><div>Christmas decorations didn't get put up this year, and many of the Christmas events we didn't attend. Luckily the boys are a bit older, and Arina doesn't understand yet, so it wasn't a big deal! But it was a big deal to me. I felt like in the last month the boys had been through a lot! So a lot more time was focused on them, and things they wanted or needed!</div><div><br></div><div>There are good things that come from being the sibling of a fragile child. And I think, that those far outweigh the bad. </div><div><br></div><div>The boys are very self sufficient. When they have to go out in the real world, they can cook and care for themselves. Which I would have instilled in them even if Jax wasn't in our life. Because I was the same way as a child! </div><div>They are much more compassionate people! All of the boys come to Jax at least a couple times a day and kiss him, or hold him. Or just make sure they check on him. They go out of their way to help people, and to hold doors. They can pick out a person with special needs like a needle in a haystack, and they go out of their way to talk to them. I constantly find "selfies" on my phone of Carter and Arina!</div><div>I asked all three boys separately, if they would change their life with Jax. If they wished they had more time to do what they wanted to do. And here's what every.single.boy said!</div><div>They would take away any hurt he had to endure. They would want him to be able to walk, and talk to them. None of the boys said they would change their own situations at all. Not a single one! </div><div><br></div><div>Ray and I both take pride in the fact that we've concentrated a lot on making sure the boys life changes as little as possible with Jax. So I can say for a fact that it can be done. Just remember to take time once a month for each child. Even if its just popping popcorn and watching a movie. It will make a difference, I promise!</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivY7EJBR8oUtieGB3Ix-pHebwd7WJVAsIZCRrXZwSodGxU9Lqh0f35at77iusIN2UOjVFUXeefmpdoo2pcSZquB3kaF5g_R4UrlgUNvd9XGCZBYeki10SqkI_8zdKu1gPXRzcnNHOODnSb/s640/blogger-image-834614229.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivY7EJBR8oUtieGB3Ix-pHebwd7WJVAsIZCRrXZwSodGxU9Lqh0f35at77iusIN2UOjVFUXeefmpdoo2pcSZquB3kaF5g_R4UrlgUNvd9XGCZBYeki10SqkI_8zdKu1gPXRzcnNHOODnSb/s640/blogger-image-834614229.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCVlm9pkTSSyNzJG9rT1tlR2kMq9DvmhE1bVOV-QagaqIb2TJEAhFTVSq8P1xfWbBEscakQeZcqSBzpoGyLXMq_hINvBa_E_62FkAA9KRt5XA5naDStsbVUUHEjKwt48tcUYp4a2Z6adNF/s640/blogger-image-1554056135.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCVlm9pkTSSyNzJG9rT1tlR2kMq9DvmhE1bVOV-QagaqIb2TJEAhFTVSq8P1xfWbBEscakQeZcqSBzpoGyLXMq_hINvBa_E_62FkAA9KRt5XA5naDStsbVUUHEjKwt48tcUYp4a2Z6adNF/s640/blogger-image-1554056135.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4sgJiytpC4eIyiaYtb7AbqkBCGl4leDzE0ilrnRCtH7IOCzUtJmZos7-Kgl6NuR2te7SpWych28FPVuWARlJuVz0pkBfANLv9L6B5GHFDjtfnaGEe5ttjaqYezOAfYTTRqqubB8lhHA1y/s640/blogger-image--1351590641.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4sgJiytpC4eIyiaYtb7AbqkBCGl4leDzE0ilrnRCtH7IOCzUtJmZos7-Kgl6NuR2te7SpWych28FPVuWARlJuVz0pkBfANLv9L6B5GHFDjtfnaGEe5ttjaqYezOAfYTTRqqubB8lhHA1y/s640/blogger-image--1351590641.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com2tag:blogger.com,1999:blog-2212485478080287079.post-65792425695372979682013-12-25T11:54:00.001-07:002013-12-25T11:54:06.279-07:00Merry Christmas!Merry Christmas to all of our friends and followers! <div>We are just thankful our munchkin is home and doing good. That's all we ever want! </div><div>We love you all!</div><div><br></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBESrPTHXJj4uzhpxvGmdZhJRd3X2d__TD7uRo6NGV1Np9IqoFwfYTedwRyilPbHxmGLN2muXa5ntuyJKecF6mjIq7KpeYQEmlkkWlmyJCk9YeVybtKgkYdm7spi24JwnSSMhQB5tSTOEG/s640/blogger-image--45707199.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBESrPTHXJj4uzhpxvGmdZhJRd3X2d__TD7uRo6NGV1Np9IqoFwfYTedwRyilPbHxmGLN2muXa5ntuyJKecF6mjIq7KpeYQEmlkkWlmyJCk9YeVybtKgkYdm7spi24JwnSSMhQB5tSTOEG/s640/blogger-image--45707199.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR5szkAFG-N-1W6BDOWfk2zYro6RmzmxzEL-R_OewQ6O4-8TJYNEJHcgOh-OLPKDDva4uiMpPI__S3GaGSaP-sNjkxH1NL5DJHqOkIwhnmgu_IfyPt9XA1dbKeApCm2TebMmvHHKiKxviw/s640/blogger-image-2070862225.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR5szkAFG-N-1W6BDOWfk2zYro6RmzmxzEL-R_OewQ6O4-8TJYNEJHcgOh-OLPKDDva4uiMpPI__S3GaGSaP-sNjkxH1NL5DJHqOkIwhnmgu_IfyPt9XA1dbKeApCm2TebMmvHHKiKxviw/s640/blogger-image-2070862225.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdZsTjSdSa4PLbTewQS1AS5mDfzDA4Rz838HzWiLhGQJeHwQA7NPrdfkE9t3eSW5qyr5dB2oCt6f0JDbn3qun0nXZ142pglycEiZMmLB2RgOaAM6rwJ6zTezBNByEaMZyxVk89u9xD6_IH/s640/blogger-image--1030810171.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdZsTjSdSa4PLbTewQS1AS5mDfzDA4Rz838HzWiLhGQJeHwQA7NPrdfkE9t3eSW5qyr5dB2oCt6f0JDbn3qun0nXZ142pglycEiZMmLB2RgOaAM6rwJ6zTezBNByEaMZyxVk89u9xD6_IH/s640/blogger-image--1030810171.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com2tag:blogger.com,1999:blog-2212485478080287079.post-15327317036286664552013-12-08T17:46:00.001-07:002013-12-08T17:48:05.631-07:00Jaxsons bucket list!Jax is keeping us on our toes, which is why I haven't posted in so long. We went to Utah for thanksgiving. A quick trip because daddy has no time off so we couldn't come down for Christmas. I got horribly sick with the flu. Jax wasn't really sick, but he kept having these weird airway episodes. It sounded like stridor. I changed his trach multiple times, and it wasn't that. It was like his airway was collapsing. We decided to just hurry home so we could get Jax to his doctors. <div><br></div><div>In cedar city we stopped to pick something up from Rays aunt. While we were stopped Jax turned blue and dropped his sats into the 50's! I popped him on his vent and he did better. But I didn't have the battery power to get all the way home. We stopped in St. George to eat. I told Ray that I wasn't comfortable driving the rest of the way home with him. We had decided to stop at their hospital and see how they could help us. On our way to the car he did it again! This time he was on the vent already! I told Ray just to call 911!</div><div>They took us to Dixie where he continued to have desats and they had to bag him. They called life flight and he was flown back to salt lake to PCMC. </div><div>We figured jax just wanted to cross off flying in a Life Flight airplane off his bucket list! We had to turn around and drive back up to salt lake. And this is where we've been since! Jax did test positive for the flu, and he also has the same blood infection he did last month. All of his lines had to come out, including the beloved port. Since then we've been waiting for negative cultures so we could put a new line in and go home. They won't transfer him because there is nothing CHOC has that PCMC doesn't, so they won't approve it! We were hoping today would be the day. But his cultures once again flipped positive! He also has a fever this morning. ID is worried the bug is colonized somewhere in his body, like his heart. Ray and the boys headed home today. They need to get back to school and work. Ray already won't get paid for last week, which is really stinky right before Christmas! Honestly I'm not even sure if our Christmas tree will get up! Me and Arina are still in Utah with Jax. They will drive up next weekend to pick us up. We are staying at my moms house, which is nice. But it still sucks! We just need to think negative so we can get out of the hospital and hopefully be together as a family for more than a week at a time!!</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIMup3PrLPagkIpo-kCX6B0EC8_1-7aqlJs8CrnGmXzuWy6YMVoe-VYpxeKER1vjpg-nuZir2cGjRMEL8ZOL36BjZD8_lHmh4qqBzwwdZOFXEAPp0-gWmugCDyL7EMLCNHllIPprrIpASJ/s640/blogger-image--1786322675.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIMup3PrLPagkIpo-kCX6B0EC8_1-7aqlJs8CrnGmXzuWy6YMVoe-VYpxeKER1vjpg-nuZir2cGjRMEL8ZOL36BjZD8_lHmh4qqBzwwdZOFXEAPp0-gWmugCDyL7EMLCNHllIPprrIpASJ/s640/blogger-image--1786322675.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0LrG8jhZdCGv4MMlu5YN1oKvpTZSIbPvdqfMKkR7dP61s0BpZrgwszb1y0VxJTINhre4QzDh_WuyHmQ1ion7sr49x_MKudnvtXt6BAhYiV_cjJEJCTlpVgPq82RbsZF248nq3XzlSRjqo/s640/blogger-image--534801656.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0LrG8jhZdCGv4MMlu5YN1oKvpTZSIbPvdqfMKkR7dP61s0BpZrgwszb1y0VxJTINhre4QzDh_WuyHmQ1ion7sr49x_MKudnvtXt6BAhYiV_cjJEJCTlpVgPq82RbsZF248nq3XzlSRjqo/s640/blogger-image--534801656.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNtRKH-c-QrLgtFjmRW-p_4xTCxQHHFTAfNZCA6IOXVIXQrX4XT1lBmcvmvyb4qbpheH74ayWeiG1bJPqG7R8k4e_H7NElYuwyeCjZqZ0wI0L3tZK80jPY8E6bkQLHOnbm9FVQzupeX1y0/s640/blogger-image-1786023422.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNtRKH-c-QrLgtFjmRW-p_4xTCxQHHFTAfNZCA6IOXVIXQrX4XT1lBmcvmvyb4qbpheH74ayWeiG1bJPqG7R8k4e_H7NElYuwyeCjZqZ0wI0L3tZK80jPY8E6bkQLHOnbm9FVQzupeX1y0/s640/blogger-image-1786023422.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggEUaFFXxBW4EBlWmoZht66yxOn4Btonw_5WZJ3p8hn32DR-8v6-7ZFjwELRBJ2jGMtEMAmHLbuvsg5ktuDOY-i5DuZH28Ps1j5ioBsbd73TeejkKGn8mGX_TOY-204LYw0uu-okFv8TcW/s640/blogger-image-890863323.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggEUaFFXxBW4EBlWmoZht66yxOn4Btonw_5WZJ3p8hn32DR-8v6-7ZFjwELRBJ2jGMtEMAmHLbuvsg5ktuDOY-i5DuZH28Ps1j5ioBsbd73TeejkKGn8mGX_TOY-204LYw0uu-okFv8TcW/s640/blogger-image-890863323.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com2tag:blogger.com,1999:blog-2212485478080287079.post-71663899707010407622013-11-19T10:17:00.001-07:002013-11-19T10:25:23.107-07:00Tips for disneys new DASI've been wanting to write this post for a while. But I really wanted to use the DAS multiple times before posting about it! I want people to know that it's totally doable, and give some tips on how to make the most of your trip!<div><br></div><div>Let me first say that this is for Disneyland, resort, and Disney world will be a bit different!</div><div><br></div><div>First off you go to city hall, same as with the GAC. Here's your first tip...city hall can have a long line if its a busy day. If your visiting both parks. Get your DAS at California Adventure. The line at their city hall tends to be much shorter! They have extra staff at city hall to try and make it go faster. They use iPads for the DAS and we've even gotten our pass while standing in line! They will also want to see everyone in your party, so keep everyone close! This eliminates people getting the max people in and bringing more friends or letting other people come with them!</div><div><br></div><div>Ok, if all you need for your child is the ability to leave them in their stroller in line, then they will simply put a red tag on the stroller, showing its to be used as a wheelchair. This is what they already did in Disney world. Just so you know if you only tag your stroller, you still have to wait in lines that are handicap accessible, which is most rides in DCA (Disney California adventure)</div><div>If your child has sensory issues, and can't stand in long lines, then you can get the DAS. (You can also tag your stroller along with the DAS) They will take your child's picture for the card. On the back is spots for them to give you times for each ride. One big misconception I have to explain is....you don't have to go directly to each ride for a come back time! People keep saying, we go to the ride and my child doesn't understand that we have to leave and come back. No, that's not how it works! There are kiosks set up around the park, and they will give you a paper telling you where the kiosks are. Any kiosk can give you a time for any ride! City hall is also a kiosk. Before you leave city hall they can give you your first come back time. They take the wait time for the ride, and subtract 10 minutes. We've only had one wait time over 30 minutes, and that was Small world at christmas time! Usually by the time I walk to the ride, it's our come back time! Use this along with fastpass for rides that have it. Don't get a come back time for a ride that has fastpass. You can use both at the same time! For rides that the line is shorter than 10 minutes, you don't even need a come back time, just go through the typical handicap line or exit. It's better to plan your day, which is smart anyway for a busy park! Get come back times for rides that tend to have long lines! Most of the rides in fantasyland, with the exception of small world and Peter Pan, you can just go through the exit like normal, no need for a come back time!</div><div>I'm still seeing people abuse the pass, but not nearly as much. The best part, the lines in the handicap line are much much smaller! Remember the line at pirates of the Caribbean? How bad it could get? No more! We still have to wait longer on some rides to get a handicap vehicle. That's if your child stays in their wheelchair. This time of year Haunted mansion and small world are busier for wheelchair bound people! </div><div>My biggest advice....be polite! If you walk in to Disneyland with an already bad attitude, not only is the staff going to be annoyed, but your already ruining your own day! Always remember life is what you make it! The staff is more than willing to help, as long as your polite to them as well! If you happen to get a really rude cast member, take down their name, Disney does not tolerate that in their cast members!</div><div>Also if for some reason the pass is simply not working, go back to city hall and let them know, they will help you! Again, if its not working and you go back to city hall for help, BE POLITE! Even if your frustrated that its not working, screaming at the staff is not going to help anyone!</div><div>And lastly, give it a day or two to really get the hang of it. Don't say after a couple hours it's not working. Even I, as someone who was telling people to just try it, was frustrated on the first day! I was already having a bad day, Jax J tube was leaking like crazy, and our suction was not working. Add in a new system and I was totally overwhelmed! But its a breeze now, and now that the staff is used to it, the kinks are working themselves out, and things are running very smoothly! If someone tried it during the first few weeks it was out, and they are saying its a disaster, they haven't given it enough time! It's really not that hard, and I don't feel like its any worse than the previous system, and now you have the added bonus of much shorter handicap lines and less abuse!</div><div>If you have any more questions or I left something out, leave a comment and I'll answer it!</div><div>You know that we'd go to Disney even without a special pass! It's still a place that Jax can be like everyone else! It's a magical place that makes us all feel special, and the way the staff treats our littles will keep us going back forever! After all, Arina is the Disneyland princess! Just ask the cast members!</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyU1Sr5SGjizZSJilx72IdilL3v0js52DCL7PB5lphBRbHHrkv8uoxpXeALiJZ_0rpZYfdrzEMBkuHUQVSYy_XQKhC8kDZvOZb5-4YrdMhwBnloXricRbB_cZs8xkcoktVWpwiHMMPaE0Q/s640/blogger-image-961109089.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyU1Sr5SGjizZSJilx72IdilL3v0js52DCL7PB5lphBRbHHrkv8uoxpXeALiJZ_0rpZYfdrzEMBkuHUQVSYy_XQKhC8kDZvOZb5-4YrdMhwBnloXricRbB_cZs8xkcoktVWpwiHMMPaE0Q/s640/blogger-image-961109089.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgag25VILAZlDsFdmljf2kSCTSSdzigBV4GfYc_D8pJdC8iI3wc46KLm6111KL5r6hyf1nHgWL-zWVChNuEZ1rKYz3Af8gydRigJ_ZD0IOzkM8EmUJJ3vG2IoQ-zdRp0_7W6Rl5NZdjbJ7X/s640/blogger-image--267651056.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgag25VILAZlDsFdmljf2kSCTSSdzigBV4GfYc_D8pJdC8iI3wc46KLm6111KL5r6hyf1nHgWL-zWVChNuEZ1rKYz3Af8gydRigJ_ZD0IOzkM8EmUJJ3vG2IoQ-zdRp0_7W6Rl5NZdjbJ7X/s640/blogger-image--267651056.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbtyLhZJbvPqqUmBOpi1MIM-xM2cC5-Aa39TiBfIgkCAr76V6zIJrv9UWYXWYOEfWyHMJOvDgucCIyI-WI7ymLqvhB2hy3kBCN5d5UDd1s1CSniSddIbyoTsS9vNHXuPPFX6uGybpCQYD1/s640/blogger-image-891602582.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbtyLhZJbvPqqUmBOpi1MIM-xM2cC5-Aa39TiBfIgkCAr76V6zIJrv9UWYXWYOEfWyHMJOvDgucCIyI-WI7ymLqvhB2hy3kBCN5d5UDd1s1CSniSddIbyoTsS9vNHXuPPFX6uGybpCQYD1/s640/blogger-image-891602582.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI_M20c-6lqgujAH2ibGugbdrhHfL-rfg8ru5zMb_vF05qAnt1IHuuI3WNO8hR6XDB2Vlk-ix73vIHCYtdQy0NbjdQ0v9_O4LqQWONvxngms2O1j3HyWVTG1Wl60pDxhzSfh5SV5jmqthF/s640/blogger-image-1581115287.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI_M20c-6lqgujAH2ibGugbdrhHfL-rfg8ru5zMb_vF05qAnt1IHuuI3WNO8hR6XDB2Vlk-ix73vIHCYtdQy0NbjdQ0v9_O4LqQWONvxngms2O1j3HyWVTG1Wl60pDxhzSfh5SV5jmqthF/s640/blogger-image-1581115287.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSFSQ3BbT93GvAtAeDJurissiOxGiq-ziJlcbbnTEuEEDPyXET3KHan1t_sk6_65CEoPHMlUvMsv2oK0wEmvB3e6JE1w04hXS9yYNBpwt2lN4x7zccqbupJ8Fh8bdA60WFcwQapj0Uf1az/s640/blogger-image--554185565.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSFSQ3BbT93GvAtAeDJurissiOxGiq-ziJlcbbnTEuEEDPyXET3KHan1t_sk6_65CEoPHMlUvMsv2oK0wEmvB3e6JE1w04hXS9yYNBpwt2lN4x7zccqbupJ8Fh8bdA60WFcwQapj0Uf1az/s640/blogger-image--554185565.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhUfhIMcIPTCJtK3HkK7VtPxtFigBkdxb7midV9qezgFSyOGVLHAMvvgVV8kWbjQopnaUrfE9Nb9XlXUH72NRqIAP2IcEF8vF8QP8MJi8r9_0_T7zZvPKkh8kz7hlcAFO9PYWOBNMowGwD/s640/blogger-image--2145769169.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhUfhIMcIPTCJtK3HkK7VtPxtFigBkdxb7midV9qezgFSyOGVLHAMvvgVV8kWbjQopnaUrfE9Nb9XlXUH72NRqIAP2IcEF8vF8QP8MJi8r9_0_T7zZvPKkh8kz7hlcAFO9PYWOBNMowGwD/s640/blogger-image--2145769169.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOsuSb3lswXomNLqjWmGkmWIbAuRJ8t95m1g-bp4GIJJEudHzAVujdAJ5OJx5Fs6cLMZzpcOza1TRRcsf6mRmJbmD9SV9XoS2okS-bJcobrSPffCFJX_anV7ZgdBuoj1dvYfoX3eiuCq-I/s640/blogger-image--867564363.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOsuSb3lswXomNLqjWmGkmWIbAuRJ8t95m1g-bp4GIJJEudHzAVujdAJ5OJx5Fs6cLMZzpcOza1TRRcsf6mRmJbmD9SV9XoS2okS-bJcobrSPffCFJX_anV7ZgdBuoj1dvYfoX3eiuCq-I/s640/blogger-image--867564363.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com8tag:blogger.com,1999:blog-2212485478080287079.post-26664347296609865132013-11-10T20:57:00.001-07:002013-11-10T20:57:49.744-07:00Home again!Munchkin is home again! Tomorrow will be day three home and we are still a bit on edge as that's the max days he's been home in a month! <div>His port was positive for enterococcus, and to save the port from being pulled, he is on 24/7 IV antibiotics through it. They were concerned about endocarditis because I guess this particular bug is prone to causing it. He had an echo, and then a trans esophageal echo and luckily both were negative! </div><div>The bad news is the tpn and antibiotic are not compatible, so we had to have another line placed for his tpn. So he's currently at home with two lines, running two different meds. Needless to say he's a lot of work right now! The tpn runs for 16 hours, then we run 8 hours of IV fluid in between. That runs through a popliteal line behind his knee. The antibiotic runs 24/7 through his port. The good news is we do think that the J tube site will close on its own. Nothing is leaking from there anymore, and the surgeon is giving it two more weeks to completely close, and then we'll start feeds again! </div><div>All I care about is that my baby boy is home where he belongs! We can do anything he needs to keep him here!!</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-1R-w0zq3oTxd-EktcAnH45Zb1Tlni7UXLKVXp1CAW1CWTnKNtRaTQs_3suYGZlYBO3QxBPF6fdfR4AcEB9qUTerdmPapOCmEwXM7fkoTA-grouoJ-KJCx97rF092RBoAgHPahyphenhyphenEaGBfo/s640/blogger-image-581706772.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-1R-w0zq3oTxd-EktcAnH45Zb1Tlni7UXLKVXp1CAW1CWTnKNtRaTQs_3suYGZlYBO3QxBPF6fdfR4AcEB9qUTerdmPapOCmEwXM7fkoTA-grouoJ-KJCx97rF092RBoAgHPahyphenhyphenEaGBfo/s640/blogger-image-581706772.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD8YpahF90PQ42IyMXrTb4thUw6gFUqBH4aH44tgsJdEOLDF7ZEYmfsCFe9yy9U7Eteir5K1KRchj7rJQd_EV7FAZEkTL-3jvTJWcVglnS5qNY-a9ckvZcCf2fc9FK_jTdW1bOkFV4Db0U/s640/blogger-image-1265841944.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD8YpahF90PQ42IyMXrTb4thUw6gFUqBH4aH44tgsJdEOLDF7ZEYmfsCFe9yy9U7Eteir5K1KRchj7rJQd_EV7FAZEkTL-3jvTJWcVglnS5qNY-a9ckvZcCf2fc9FK_jTdW1bOkFV4Db0U/s640/blogger-image-1265841944.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAs6aM2fqPCrM2q2IWSgTqh2b-i465WLFzi29ePStxoOJzAOlkrznpJbNgBKtKiuhQXWs78eNbEBGu11NHjOs_kVhWWsNUPdxYO3d0lEhprQAlJGxA7N709MYyxsMVt7Xs-qReQyk5Udij/s640/blogger-image--229459319.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAs6aM2fqPCrM2q2IWSgTqh2b-i465WLFzi29ePStxoOJzAOlkrznpJbNgBKtKiuhQXWs78eNbEBGu11NHjOs_kVhWWsNUPdxYO3d0lEhprQAlJGxA7N709MYyxsMVt7Xs-qReQyk5Udij/s640/blogger-image--229459319.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com0tag:blogger.com,1999:blog-2212485478080287079.post-30768571761668923142013-11-03T21:25:00.001-07:002013-11-03T21:27:07.724-07:00Third times a charm, I hope!Jax had three days home this time! <div>3 whole days!</div><div>Jax has a blood infection! Blah!</div><div>Cultures from his port are positive. Today they drew peripheral cultures, and we may be getting an echo to check for endocarditis. The fact that he continues to spike fevers, well they don't like that at all! </div><div>We need the cultures to come back negative and this infection to get under control so we don't lose the port! That would be bad!</div><div> This is the third stay this month, we're just hoping third time is a charm and we can enjoy the holidays at home!</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKToFOa951XbWo2t4ZjJvi9qp_7QFc3qfqbFDomNkF2psIXyUm7gn1ZDgcxZqi2-BTcpz3LN1sLd34Ag57AjgWOuftvro9BwnX1UrbE_i1yj6WVF9zqHCcmMlJR-FqTnzLw0tIlx26Le70/s640/blogger-image--231556149.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKToFOa951XbWo2t4ZjJvi9qp_7QFc3qfqbFDomNkF2psIXyUm7gn1ZDgcxZqi2-BTcpz3LN1sLd34Ag57AjgWOuftvro9BwnX1UrbE_i1yj6WVF9zqHCcmMlJR-FqTnzLw0tIlx26Le70/s640/blogger-image--231556149.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com0tag:blogger.com,1999:blog-2212485478080287079.post-83718249400418510392013-11-01T16:02:00.001-06:002013-11-01T16:02:34.068-06:00Home in time for Halloween!Jax was discharged Wednesday, just in time for Halloween! <div>He is still on tpn and lipids, hoping his j tube will close on its own. It's still leaking, and I think if it hasn't closed by now it's not going to! </div>His skin is totally healed around the site, and they are using an ostomy bag to keep track of how much drainage comes out. Thank goodness we got the port placed when we did, because putting a central line in is impossible, which is why we did it to begin with. See mommy really does know best!<div>I'm just glad we got to take him out in his costume! And next time we hit Disney its going with us as we'll, since our Disney friends missed it at the Halloween party! </div><div>We hope to get some better pics today with the good camera, but they looked adorable and were the talk of the school!</div><div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUFJQanDqWI4KqEGN5lBIXnn7ijlXSwqS1L5sEv-NQ7A_JLUrJC8IhJyALKEz6oKpFHa27ylSaAUztsZNDkSHrp9pm0CxLdEhZQwyRZIaOSXLsfn8Pv5yOsPpECQrGN0TbtP8FYVfhEWG8/s640/blogger-image-1972694939.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUFJQanDqWI4KqEGN5lBIXnn7ijlXSwqS1L5sEv-NQ7A_JLUrJC8IhJyALKEz6oKpFHa27ylSaAUztsZNDkSHrp9pm0CxLdEhZQwyRZIaOSXLsfn8Pv5yOsPpECQrGN0TbtP8FYVfhEWG8/s640/blogger-image-1972694939.jpg"></a></div></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBgHj_BQt7dC5tT2cCEtwIvX2TJR501tOwTp6YRiARpEmXoKH7zJOP-FbJDr6GfMfTVN8ku_Y8ysJ1ru9F22-5gGqKBU3fUt2bmiNzMsFyaVfveRpqjk2_cS3MdjxrwgfxZuS8m2UNNUyk/s640/blogger-image-217674167.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBgHj_BQt7dC5tT2cCEtwIvX2TJR501tOwTp6YRiARpEmXoKH7zJOP-FbJDr6GfMfTVN8ku_Y8ysJ1ru9F22-5gGqKBU3fUt2bmiNzMsFyaVfveRpqjk2_cS3MdjxrwgfxZuS8m2UNNUyk/s640/blogger-image-217674167.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6M8Ze6t0PNN1TZEo08Vfw-9pz_8IOJT614M2LTH5M2e_bIesNA12fuLmvT8UST61jOrSVFtyd3KUMnom2lR_uBJIhxBsUT31UrvVXnOSGi_DRzsjfGuNenvLJlWuZ3gqnksJc_xifzEQ_/s640/blogger-image-403916080.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6M8Ze6t0PNN1TZEo08Vfw-9pz_8IOJT614M2LTH5M2e_bIesNA12fuLmvT8UST61jOrSVFtyd3KUMnom2lR_uBJIhxBsUT31UrvVXnOSGi_DRzsjfGuNenvLJlWuZ3gqnksJc_xifzEQ_/s640/blogger-image-403916080.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com2tag:blogger.com,1999:blog-2212485478080287079.post-81614369266789535532013-10-27T21:54:00.001-06:002013-10-27T21:54:25.845-06:00Still here!This is the longest hospital stay since we move to California two years ago! <div>I think, how in the world did I do weeks, even months in the hospital? </div><div>Truth is, I don't know how we ever survived that long inpatient, and still have a life with other children! </div><div>For most things they say it get easier with time, for hospital stays, I think it gets harder with time!</div><div>Tomorrow will be day 10 of this stay. But if you count the last stay and the days inthe ER, which was every day we were not inpatient. We are going on three weeks at CHOC!! And I still don't have a discharge date or see an end in sight! Tomorrow I'm taking up the Halloween lights we bought for his wheelchair, and instead will hang them in his hospital crib. His costume specially made for him will be worn in a hospital room. It seems like everything for Jax happens in a hospital room! </div><div><br></div><div>And it sucks!!</div><div><br></div><div>But we just keep in keeping on!</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCDB8JpK94klXYJuOOkN_BPui6Br_vZJO6M0YC608Z88X1yu8kCHxHaj6DTXBsxIG3JQ-0vVt2wDV_ZBe6AodFc24okyilSO366Sho3vf74dA1j9W-_8tdpnce7BftdMuKtQ41ZuJwjWSd/s640/blogger-image-2026670861.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCDB8JpK94klXYJuOOkN_BPui6Br_vZJO6M0YC608Z88X1yu8kCHxHaj6DTXBsxIG3JQ-0vVt2wDV_ZBe6AodFc24okyilSO366Sho3vf74dA1j9W-_8tdpnce7BftdMuKtQ41ZuJwjWSd/s640/blogger-image-2026670861.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggFkxwOKlupnbT1yD1rK2Y_WZ54jbDwd0wCyyuU_PjfLP4aIj61Ju8WE1IG0Fg6WMX5P3RznNhVUbq03C0tPjUNPuqfZNRDPx0S84jAtlTL4KJ_7vJ2ueIydBYT5kNYUQkPShdjBDuWeP4/s640/blogger-image-1780469395.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggFkxwOKlupnbT1yD1rK2Y_WZ54jbDwd0wCyyuU_PjfLP4aIj61Ju8WE1IG0Fg6WMX5P3RznNhVUbq03C0tPjUNPuqfZNRDPx0S84jAtlTL4KJ_7vJ2ueIydBYT5kNYUQkPShdjBDuWeP4/s640/blogger-image-1780469395.jpg"></a></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjuN-BcAKU-gaUwaifrWgJRrR0CRgzQQTJKMrScLWTWWMQUOnTLxtQr5-eH4Ld5P4Wj-1zmmf9XnPPiFQOTl70-rd1Q39wSL63n19WHvwzQaM9HrE5hp83-iEij85O7020EJkC1cSysSb8/s640/blogger-image--711801905.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjuN-BcAKU-gaUwaifrWgJRrR0CRgzQQTJKMrScLWTWWMQUOnTLxtQr5-eH4Ld5P4Wj-1zmmf9XnPPiFQOTl70-rd1Q39wSL63n19WHvwzQaM9HrE5hp83-iEij85O7020EJkC1cSysSb8/s640/blogger-image--711801905.jpg"></a></div>Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.com1