tag:blogger.com,1999:blog-24251823707642925592024-03-18T22:55:02.975-04:00The Willis FamilyAmelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.comBlogger151125tag:blogger.com,1999:blog-2425182370764292559.post-87192386942538355152021-09-28T13:52:00.002-04:002021-09-28T13:52:36.586-04:00Update & Archive<p style="text-align: justify;">Thanks to social media, we have not used this blog in so long. I find Facebook & Instagram much easier to use and post pictures, so there is much more Jensen content there (check out the Willis Family Heart Facebook group). I will be archiving this blog but wanted to post a Jensen update first. </p><p style="text-align: justify;">He is now 9 years old. In 2020, we moved from our home in North Carolina to Austin, Texas. This means we also moved his care to Texas Children's. They have a phenomenal reputation, but it was so difficult to leave our family at CHOP and the doctors we loved dearly in North Carolina. </p><p style="text-align: justify;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCEMLUUvcj9ZVYOTm4eOPvsP7idqy3xSXvG8emLMAPfeMQAR-NuktmPGHe1BRSB0nBb4-Vxcvlx_0ihB7Z1IYV-vg18bBB2aBlq2AsDDZw0rooJbpUuFl8wFADtIg5LFt9G4IvrEC86Q3n/s4032/IMG_1975.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCEMLUUvcj9ZVYOTm4eOPvsP7idqy3xSXvG8emLMAPfeMQAR-NuktmPGHe1BRSB0nBb4-Vxcvlx_0ihB7Z1IYV-vg18bBB2aBlq2AsDDZw0rooJbpUuFl8wFADtIg5LFt9G4IvrEC86Q3n/s320/IMG_1975.HEIC" width="240" /></a></p><p style="text-align: justify;">Jensen is in 3rd grade and is still a lover of all animals, especially our 1 year old bernedoodle, Broccoli. He is embracing life in Texas and is often seen wearing his cowboy hat and singing along to country music (Tyler Childers and Cody Johnson are his favorites). He has an IEP at school to help him with reading, math and social skills. We are still seeing psychiatry regularly and adjusting his medications as he ages. Emotional regulation and changes in routine are still a struggle. However, he has come such a long way in this area and we are so proud of how in-tune he is with his emotions. </p><p style="text-align: justify;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxUKmNllmnP5012xCWeY_Vq8VOQY7Ub0q_3V69eSEARVaMNv1zPndqmpXL0_qTkBcKG2nGi-asQQop4EsxmTmXtLnaxCPlBtRSXeAEkoy1apcyDuW2GLNwVW_D1xcfyE-neJ51ma45UCcq/s1024/IMG_1772.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1024" data-original-width="768" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxUKmNllmnP5012xCWeY_Vq8VOQY7Ub0q_3V69eSEARVaMNv1zPndqmpXL0_qTkBcKG2nGi-asQQop4EsxmTmXtLnaxCPlBtRSXeAEkoy1apcyDuW2GLNwVW_D1xcfyE-neJ51ma45UCcq/s320/IMG_1772.JPG" width="240" /></a></p><p style="text-align: justify;">He recently had a cardiac MRI and we received a great report. His cardiac function looks great and he has a leaky valve that has been stable for years. He still has several stents and they all have excellent blood flow through them! All good things! </p><p style="text-align: justify;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQNqBIcAP2zw3Pa8eAyrBJDYShPJIyj1yBzHFDEnf9_-AqOyhhAaih5Jax3mv0voRj2mOt9XdTBOSQkuBC19g8g2m9E133Mb898ddXsWhfn9ufP7501ZAaVwyIPSjr12sHihOeNPeUXvtp/s4032/IMG_1718.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQNqBIcAP2zw3Pa8eAyrBJDYShPJIyj1yBzHFDEnf9_-AqOyhhAaih5Jax3mv0voRj2mOt9XdTBOSQkuBC19g8g2m9E133Mb898ddXsWhfn9ufP7501ZAaVwyIPSjr12sHihOeNPeUXvtp/s320/IMG_1718.HEIC" width="240" /></a></p><p style="text-align: justify;">We are so thankful for his health and happiness, especially with all the changes in the past 2 years (a pandemic & a cross-country move?! It was nuts!). </p><p style="text-align: justify;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9ePY2rpPkkNQkvhyphenhyphenr2EuR8DDeyIFQudmz9SD07V9GRQh2055ObNvr5F_7FLXWgyXj3vliZWjxJnuzrHnfbNra25RxeMJ5beZ_cXl5OnsVhRusxfjYOIeFsEcBkOoWpCuKJBVlawnBsEBG/s4032/IMG_0794.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9ePY2rpPkkNQkvhyphenhyphenr2EuR8DDeyIFQudmz9SD07V9GRQh2055ObNvr5F_7FLXWgyXj3vliZWjxJnuzrHnfbNra25RxeMJ5beZ_cXl5OnsVhRusxfjYOIeFsEcBkOoWpCuKJBVlawnBsEBG/s320/IMG_0794.HEIC" width="320" /></a></p><p style="text-align: justify;">As always, we appreciate your prayers and well-wishes for Jensen. We cherish every milestone, every birthday, and every fun memory we get to make with our miracle boy. </p><div class="separator" style="clear: both; text-align: justify;"><br /></div><div style="text-align: justify;"><br /></div><p style="text-align: justify;"><br /></p>Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-47016977431437526552014-06-04T21:41:00.001-04:002014-06-04T21:44:32.797-04:00AngelsToday started off with a terrible phone call from my dad. My grandmother passed away early this morning. She was a cheery, quiet, and lovely lady who will be greatly missed, but I'm so happy she and Grandaddy are together again. She sent us the most gorgeous day of sunshine here in Philadelphia! Thanks for that, Grandmomma :)<div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy8pLV2zIrCC-0vzxah34KlcCPGGOMk90ycfZVmJF8yB3VuK1_LTqKFJDAf6XMYPsS-GXNI7UAa5KrJP5flzNEy0rt1EkbrYp05T_AC2HRK2G7Ix3B7CCRAhgvLoyNNJXqnsHJoef9BDQP/s640/blogger-image--2111391992.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy8pLV2zIrCC-0vzxah34KlcCPGGOMk90ycfZVmJF8yB3VuK1_LTqKFJDAf6XMYPsS-GXNI7UAa5KrJP5flzNEy0rt1EkbrYp05T_AC2HRK2G7Ix3B7CCRAhgvLoyNNJXqnsHJoef9BDQP/s640/blogger-image--2111391992.jpg"></a></div><br></div><div>Since we had a free day we tried to make the best of it and let Jensen have fun. We explored the city and he ran wild in a few parks! After his nap we went swimming and he was exhausted after all that playing!</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg5bf_lfnI3vKRnSO-3zwg-mjtx6FKtUnwO5HkRcZWymVW-lbeOMmmZqc3KKmFVR9E7FZygYAs-3g-UKciDBwlNT-Wz4z2Y9Qyk-oIMvoPbYuw64MhPiX4pxqrITjF1bRNh_6Pf_FF3pzD/s640/blogger-image-651205387.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg5bf_lfnI3vKRnSO-3zwg-mjtx6FKtUnwO5HkRcZWymVW-lbeOMmmZqc3KKmFVR9E7FZygYAs-3g-UKciDBwlNT-Wz4z2Y9Qyk-oIMvoPbYuw64MhPiX4pxqrITjF1bRNh_6Pf_FF3pzD/s640/blogger-image-651205387.jpg"></a></div><br></div><div>Jensen will have a busy day of pre-op tomorrow. We will also be meeting with all of the doctors on his team. We will find out tomorrow what time he is scheduled for surgery on Friday.</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs_ShZV_PxYiAuIvJIDkf3SEhFuMWylcqVQ9-_9Ps2XG_0_RxfaPxFNgED30CefI_jt9ycWQ1oD_rJMuMH3c7k63fsNLxPYXAhM3U4H50QY47Sd5xgY7MfBmAXzB8JxikXGwg6rZ8bb57K/s640/blogger-image--1461773483.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs_ShZV_PxYiAuIvJIDkf3SEhFuMWylcqVQ9-_9Ps2XG_0_RxfaPxFNgED30CefI_jt9ycWQ1oD_rJMuMH3c7k63fsNLxPYXAhM3U4H50QY47Sd5xgY7MfBmAXzB8JxikXGwg6rZ8bb57K/s640/blogger-image--1461773483.jpg"></a></div><br></div><div>Please remember my family in your prayers as we mourn the loss of my grandmother. Please pray Jensen has an easy blood draw and cooperates for his echo and X-ray. And don't forget that we are asking everyone to go RED FOR JENSEN on Friday! Wear red for Jensen to show your support and please send us pictures :)</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7l7nXBN3qkrEHjuhs_fswQvCqJapq83tb89xBRBIvGABJ1SjTdSKDDq9nRaCQTpFVwdXbDS5_wvQi2HsrY5oJOHCVU37X2I1mZ9zkBPvUTM_Q8S3CD5lyBnGI7lEGkUEJvGl918wL6xlJ/s640/blogger-image--239262179.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7l7nXBN3qkrEHjuhs_fswQvCqJapq83tb89xBRBIvGABJ1SjTdSKDDq9nRaCQTpFVwdXbDS5_wvQi2HsrY5oJOHCVU37X2I1mZ9zkBPvUTM_Q8S3CD5lyBnGI7lEGkUEJvGl918wL6xlJ/s640/blogger-image--239262179.jpg"></a></div><br></div><div>I'm confident that Jensen is going to do great during his last stage of the Fonatn palliation because he has an army of angels watching over him and he has an army of people all over the US praying for him and sending us their love. Thank you all ❤️<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGB2sTMJhxosNyBYDR5_R5Uolsjm_Zq6BBxHts6xn-hJ4AmBsVj-EtBeGQ4hZzHmA4kc4TlYfaDrn7-VphclkWLxXqYEPCxqim3ge-UpqZxJwXP2u5vo6bB4vilYY0px7pDiJ6QkHI2wNh/s640/blogger-image-1240810318.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGB2sTMJhxosNyBYDR5_R5Uolsjm_Zq6BBxHts6xn-hJ4AmBsVj-EtBeGQ4hZzHmA4kc4TlYfaDrn7-VphclkWLxXqYEPCxqim3ge-UpqZxJwXP2u5vo6bB4vilYY0px7pDiJ6QkHI2wNh/s640/blogger-image-1240810318.jpg"></a></div></div>Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-47074620510610595752014-05-27T23:33:00.000-04:002014-05-27T23:33:16.267-04:00The final stretch<div style="text-align: center;">
We are in the home stretch of preparations for the Fontan. We leave for Philadelphia in a week! It has gone by so fast! We are trying to squeeze in as much fun as we can while avoiding crowds...which is pretty hard to do. After the stomach virus hit our house last week, we decided to cancel all of our outings we had planned, including Sesame Street Live and his weekly therapy appointments. We were super disappointed to miss out on those things but its just too risky this close to surgery. </div>
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We have to keep our boy healthy!</div>
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Jensen has been doing some pretty amazing things lately...like counting to 10 on his own?! Seriously, how smart is this kid?! He also had an awesome weekend with his Gammy and Poppy, they wore themselves out! Then Jensen had his first adventure on a slip-n-slide! It was all fun and games until someone bashed their head on the ground! haha! Jensen was fine but that definitely ended our slip-n-slide escapade for the day!</div>
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As per usual, I have a mile long list of things to accomplish before we leave and no motivation to do them. I would so much rather spend time with my little man outside! There are a few things I will need YOUR help with though!</div>
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1. Please put Jensen on every prayer list from Kingsport, TN to Monterey, CA and everywhere in between. Specifically, pray that Jensen has no neurological complications, minimal bleeding from his extensive scar tissue, and a successful operation. He is very much at risk during this surgery and we know he is a stubborn kid, so pray that he cooperates with Drs. Fuller & Nicolson!</div>
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2. We are asking everyone to go RED FOR JENSEN! On the day of his surgery, June 6 (D-Day of course...how appropriate...) I would love for everyone to wear something red to show your love and support for our boy! Post your pics on our Facebook group, <a href="https://www.facebook.com/groups/632593833467084/">Willis Family Heart</a>, or on the</div>
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<a href="https://www.facebook.com/events/1425482971045712/?ref_notif_type=event_mall_comment&source=1">Go RED FOR JENSEN event page</a>. </div>
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Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-53412694928680864842014-04-15T10:31:00.000-04:002014-04-15T10:31:23.748-04:00Fontan prep<div style="text-align: center;">
Oh my how time is flying by! We are well under way for preparing for the Fontan. June 6 is coming up faster than I would like, but we are ready to get it over with!</div>
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Jensen has been making huge improvements in speech and is starting to say words on a regular basis. He is hilarious and is always trying to make us laugh! We are busy making sure we cram as much fun in as possible before the big surgery day. We have gone to the zoo a couple of times already, we went to the beach, we have had ice cream for dinner, and late movie nights with Jensen =) Hey...this kid gets a free pass for fun for all that he's about to go through!</div>
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We will be posting more updates as we get closer to the Fontan date, letting you all know the progress of how things are going. Be sure to add yourself to the Willis Family Heart Facebook group so you can see more Jensen cuteness! While we are in Philadelphia I will probably be doing more quick updates on the Facebook group since it is so much easier to use and upload pictures =)</div>
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Thank you all for your prayers as we prepare to send our brave little man back into surgery <3</div>
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And lastly, for those of you who have asked about what Jensen's surgery specifically entails, here is a much better explanation of the surgery than what I can explain! </div>
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<br />Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-15428409023150556172014-02-02T21:18:00.000-05:002014-02-02T21:18:21.220-05:00Report from the pre-Fontan cath<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN4cDEcUyjbq1F5cxanbiEjMgwg_WsUFw6UzWj_rQy8PHPnF3iuHoTFboAOP2_92Y5a9mBi4pVI4qOVP9pYtMYMKxYZh5CirBzGEVc3jzyWLJJ5VGXH1uOUEqHAbLAmQ8iR3su6a8XG-Po/s1600/IMG_0459.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN4cDEcUyjbq1F5cxanbiEjMgwg_WsUFw6UzWj_rQy8PHPnF3iuHoTFboAOP2_92Y5a9mBi4pVI4qOVP9pYtMYMKxYZh5CirBzGEVc3jzyWLJJ5VGXH1uOUEqHAbLAmQ8iR3su6a8XG-Po/s1600/IMG_0459.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanging out with daddy before the cath started</td></tr>
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We had to be at CHOP at 10 on Friday, which meant Jensen was a very hungry boy. He actually did well with the whole NPO thing so we were relieved that he was easily distracted from wanting food. He was given pre-med which made him giggly and groggy, he was also waving to everyone and being super sweet. Anesthesia took him down about 11. </div>
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<tr><td class="tr-caption" style="text-align: center;">He was looking a little bit silly from his pre-med</td></tr>
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He was finished with the cath at about 1:00, which was faster than we expected. Jensen slept for a bit when he was wheeled into the recovery room but woke up not long after that. We had warned everyone on his team that he doesn't wake up from anesthesia well and would require extra doses of meds to keep him calm (this isn't our first rodeo). When I say he doesn't handle it well, I mean he woke up angry, ripping at his IV, bending his legs (a definite no-no after a cath), bowing his back, growling, screaming, needing 3 people to hold him down, coughing, gagging.... It was so heartbreaking to watch. As his mom, I almost couldn't bear to see him in pain and scared. But that moment of weakness quickly passed when I realized that no one was moving on getting him the help he needed. I think everyone was shocked that he was so aggressive they weren't sure what to do. A few nurses and nurse practitioners got their egos bruised because Jeremy and I called them on being indecisive and not taking control of the situation. It was intense and scary and maddening and I almost lost my ever-loving-mind. Finally, Jensen was given a dose of morphine, he fell asleep in my arms and stayed that way for the next 4 hours. </div>
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<tr><td class="tr-caption" style="text-align: center;">Just coming back from the cath</td></tr>
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During that time we met with his nursing staff and the anesthesiologist to go over the procedures to order medication and why my child's care was not handled properly. We had told many people on his team that he would wake up like he did and they had no plan in place to handle him when it happened. These types of incidents prove that no matter where you are, world's best hospital or not, your child's care has to be at the forefront of your mind at all times. You have to be their advocate because there are many chances for them to fall through the cracks and I'll be damned if that happens to my kid. (Please note: these things happen and while I hate that it happened to Jensen, we still love our CHOP people. Yes we have to get a little aggressive sometimes, but we still trust this hospital with Jensen's life. We chose this hospital for a reason and in our minds, they are the best possible place for Jensen. We <3 our Philly team!)</div>
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<tr><td class="tr-caption" style="text-align: center;">Discharged!</td></tr>
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After that fiasco, Jensen woke up much more calmly. He was hungry and thirsty and ended up drinking too much juice in a short amount of time. He threw up on just about everyone in the room, went through 4 different hospital gowns, many bedsheets and towels and threw up in the elevator twice. He was so miserable but thankfully a dose of Zofran worked quickly for him. Once he got past the nausea he seemed to be feeling like himself. He ate some crackers and slept some throughout the night. By 8 am Dr. Rome had rounded and we were out of there by 9 am Saturday morning! </div>
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<tr><td class="tr-caption" style="text-align: center;">My Philly boy eating crab fries!</td></tr>
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Dr. Rychik & Dr. Rome were very happy with how his pressures looked in the cath. He had NO areas of stenosis, no need for any ballons or stents, only one small decompressing vein that they were able to coil off. That brought up his sats and he looks much more pink these days! Things looked so good that Jensen is no longer on Lovenox, only on aspirin (thank you sweet baby Jesus!). We also get to pick when we want to do the Fontan! We were totally shocked that everything went so well and that we get so much flexibility in the timing of the next surgery! </div>
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<tr><td class="tr-caption" style="text-align: center;">Airplane selfie</td></tr>
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We could not be more blessed! Jensen is still a little sore but back to
his old silly self. He's pink and happy to be home! Thank you all for
your prayers and messages, they mean so much to us! We will keep you all
updated as we start to plan the Fontan, but for now, we are going to
take it easy at home after that whirlwind trip!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp5vYKs2Q3S0Hu8xcPFIqWGPxUWS2pKNfTROJ1nH9zXGEGMthHwHW1L_gOZAe1l8c4weBWOSrTMBcYYdGaM97lhxSXcoiHq3-DObhMVjHNsV-dS2dOo97qD0zSPD99B0REIFB4M260hT4F/s1600/IMG_0521.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp5vYKs2Q3S0Hu8xcPFIqWGPxUWS2pKNfTROJ1nH9zXGEGMthHwHW1L_gOZAe1l8c4weBWOSrTMBcYYdGaM97lhxSXcoiHq3-DObhMVjHNsV-dS2dOo97qD0zSPD99B0REIFB4M260hT4F/s1600/IMG_0521.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Best traveler ever.</td></tr>
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<br />Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-78343147845896975722014-02-02T20:31:00.003-05:002014-02-02T20:31:22.669-05:00Report from our pre-op day<div style="text-align: center;">
Jensen is sleeping peacefully in his own bed tonight! And by <i>his</i> bed, of course I'm referring to the king size bed that he dominates while Jeremy and I are pushed to the edges...either way, Jensen is home =) Yay! </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOgffD6dZV3Ql9WVk_1j-ciMlSaFgcX1fX8uUdl2VjxJcYbs-mNxhHATXGnXzJkunongLlCNXOQKUbdvPiTF-TpKI9oHnrY8A8it2c2lo8ETKK2CacT5xwKZ95atIiERqivFXTz7cz4cSw/s1600/IMG_0432.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOgffD6dZV3Ql9WVk_1j-ciMlSaFgcX1fX8uUdl2VjxJcYbs-mNxhHATXGnXzJkunongLlCNXOQKUbdvPiTF-TpKI9oHnrY8A8it2c2lo8ETKK2CacT5xwKZ95atIiERqivFXTz7cz4cSw/s1600/IMG_0432.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our wild man in the hotel</td></tr>
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To do a re-cap of our trip, I will start with pre-op. At 8 am we had to be in Neurology for an EEG. Having someone in your face, scrubbing & measuring your head, first thing in the morning is not pleasant. Jensen absolutely had a meltdown until the poor EEG tech was finished placing all of the wires. He turned 50 shades of purple!! Thankfully he did well for the rest of it since he was able to sit on my lap and watch Thomas. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrVorUsooMQBXs9kVCLVq6Z3PDu9miQRgh-J4aHSElTFHwaTv73RxenjILN32qCat1YKeUD6YeXrtXZpKZYw2zm8_QM0Uk0iG9e5u5lV5BqygCa-1a8SWETMuareGv-PosHeHXkw9ajZao/s1600/IMG_0433.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrVorUsooMQBXs9kVCLVq6Z3PDu9miQRgh-J4aHSElTFHwaTv73RxenjILN32qCat1YKeUD6YeXrtXZpKZYw2zm8_QM0Uk0iG9e5u5lV5BqygCa-1a8SWETMuareGv-PosHeHXkw9ajZao/s1600/IMG_0433.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He is the best kid to travel with. Seriously. He's amazing!</td></tr>
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Next we saw Dr. Licht, his neurologist. He was absolutely amazed at how huge Jensen is and how well he was doing! He read his EEG and it came back totally clean, which means so signs of seizure activity. He did a physical exam and observed Jensen while he was being especially cute feeding his bunny, babbling constantly, and running to chase toys. I could not have been more thrilled with how this appointment went! Dr. Licht is so inviting and friendly that he made an otherwise over-stimulated Jensen very calm and comfortable. Love.That.Man. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgROxULNwzVeezqT2pEFZthkwHij029QcCmY5AtwOAvwpvlnNxop1KLGIQt1VzJnHdnhfWbSNGA-4IGWfl8viv3kCyZu9qOLpB5FZ83bLI94J1kKnlpZNM1lzcbwi6QyJdF9lUmC0328V7s/s1600/IMG_0442.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgROxULNwzVeezqT2pEFZthkwHij029QcCmY5AtwOAvwpvlnNxop1KLGIQt1VzJnHdnhfWbSNGA-4IGWfl8viv3kCyZu9qOLpB5FZ83bLI94J1kKnlpZNM1lzcbwi6QyJdF9lUmC0328V7s/s1600/IMG_0442.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggling with Daddy after his EKG</td></tr>
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We discussed the possibility of some type of preventative treatment for Jensen's seizures during the next surgery. We decided that a post-op EEG would be the best way to ensure he isn't having seizures and that if he is, we aren't masking it with any prophylactic medication. He also talked to us about risks for another stroke, which for Jensen, are very low since his stroke was not caused by a blood clot. He also went over all of the "milestones" that Jensen has achieved and told us that he sees no problems with Jensen's slower start in speech. He thinks he will be right on track once he gets started talking. We always feel so relieved to talk with Dr. Licht! He is so smart and knows Jensen's noggin like no one else! </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaRpXw6-m8Tq3qjOS8_v27jjMH7MQzbpHL1dJV_Cru_4icq9T2YsGWc1DjRgLOxR_yH2WzL6skSt06pvJCXO_VFPo_ETksngsQQN_mG0a1_ByLC-u3lyYTtdSWzflkiFUlndVzaR2X5ahb/s1600/IMG_0445.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaRpXw6-m8Tq3qjOS8_v27jjMH7MQzbpHL1dJV_Cru_4icq9T2YsGWc1DjRgLOxR_yH2WzL6skSt06pvJCXO_VFPo_ETksngsQQN_mG0a1_ByLC-u3lyYTtdSWzflkiFUlndVzaR2X5ahb/s1600/IMG_0445.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He was such a good boy for his echo. And what happened to my baby? He looks so grown up!</td></tr>
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Next we went to the cardiac intake center for pre-op. This includes EKG, chest x-ray, echo, & blood work. Jensen rocked them all! We were expecting a terrible echo but he literally didn't move the entire time! He laid on mommy and watched Elmo and was a perfect little angel...I'm so proud! Even the blood work went well, he of course cried for a minute when the needle was in, but he did awesome! After that he got to play with one of the therapy pups at CHOP. This dog was amazingly well behaved, even when Jensen tried to sit on her! He had so much fun! </div>
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We spoke with Dr. Rychik after all of his testing was finished. He was very pleased with his echo and thought that the cath would be pretty straight forward with minimal interventions. He said he looked blue, his sats were lower, but there was no evidence on any stenosis on the echo. He had a feeling there were some collateral vessels (small vessels that form, causing blood to flow in different directions that what his surgical interventions allow for, which usually cause slightly lower oxygen sats). Overall, he was happy with how Jensen looked, but of course we would have to wait until after the cath to further discuss the Fontan....</div>
Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-82060633571656764982014-01-28T20:48:00.005-05:002014-01-28T20:48:59.120-05:00Here we go again...<div style="text-align: center;">
And we are off to Philly tomorrow! Wowzers that was fast. So fast I haven't had a chance to update the world about it! We had been waiting to hear back from Dr. Rychik at CHOP to see what he thought about Jensen's latest echo. We got a call on Wednesday last week from Dr. Rychik saying he thought Jensen needed a cath with Dr. Rome in the next few weeks. (Dr. Rome did Jensen's last cath and we love him!) Of course this was pretty much what we were expecting but it makes this mama's heart start to panic hearing those words. </div>
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<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw4xiPLwkg-iI5aK_ezr4jRqWRXgaopraRwrk7edm0cBx_5_UA6LfquN8UFVVYL0wvHPO0ugIjTw8Bd2KrCV6ixkIq6JsxC6sbY3Ory25ydfpxszdphYPIE7BHeQupXvR8xLDWoxPIFQNy/s1600/IMG_0282.jpg" height="320" style="margin-left: auto; margin-right: auto;" width="240" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Arggg.</td></tr>
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Then we were waiting on a call from CHOP's scheduling center to choose a date for the procedure. We heard from them late on Friday afternoon, which was so unexpectedly fast! Our scheduled cath date is Jan 31...one week from the call! Of course, we had to immediately start making phone calls and getting paperwork together. Thank goodness that we have done this before and somewhat know the process! </div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbt27akDGgmQ6xgnIOqgbgwg9x3qBbdGitd0BhQH60yOkOf2BM9D-Z0eSl8F4DWQNaoY_Z7t5MI3P7koDALPAMJc0ZUxWQjGpfb3Z-wBa62qVqFYJP-Sfq09MMeKI9To9BNcZ5453SgQ-L/s1600/IMG_0346.jpg" height="320" style="margin-left: auto; margin-right: auto;" width="240" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweetest face in the world <3</td></tr>
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Most of our arrangements couldn't be made until Monday because apparently people don't like to stay in the office past 5 pm on a Friday to accommodate my needs?! haha! Although this week has been insanely stressful and busy, everything has neatly fallen into place and we are ready to go!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfDhyphenhyphenleJc7gHNCqkP0DsrGyxgWVaxKCMt1lSZvOadyM9N9bcp0hBZeCbKn43z05sAuhUoIrNuVmEKvdsCzpH08Mapop5h6c8RxB1J2S4_IPR-hvPL-aShwSr_qssrwblUKNv_jIMmOf81s/s1600/IMG_0402.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfDhyphenhyphenleJc7gHNCqkP0DsrGyxgWVaxKCMt1lSZvOadyM9N9bcp0hBZeCbKn43z05sAuhUoIrNuVmEKvdsCzpH08Mapop5h6c8RxB1J2S4_IPR-hvPL-aShwSr_qssrwblUKNv_jIMmOf81s/s1600/IMG_0402.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jensen and his new Snuggle Bunny</td></tr>
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The only variable in this whole perfectly planned trip is the weather. Of course it has started to snow here in NC and the whole state may very well shut down at first sight of a flurry. Please pray that our flight leaves on time tomorrow and we have a smooth travel day!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6iYEnV2heiXyXY2_BHMUQ80XxWRQBnDBEhmBpb9QujjBPbG2Oy4GlDeRDfc6jNHdM8m0c6FkhkGZ22gVVwIKlJvCVm64z4AIwSDp1xqH5Hl_a_g9w0rF9HT9WzjFCAiP8QkM31njm9D6x/s1600/IMG_0260.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6iYEnV2heiXyXY2_BHMUQ80XxWRQBnDBEhmBpb9QujjBPbG2Oy4GlDeRDfc6jNHdM8m0c6FkhkGZ22gVVwIKlJvCVm64z4AIwSDp1xqH5Hl_a_g9w0rF9HT9WzjFCAiP8QkM31njm9D6x/s1600/IMG_0260.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's our tough guy</td></tr>
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Thursday Jensen will be seeing Dr. Licht for an exam and an EEG. We will also be discussing plans for the Fontan, which Jeremy and I have only been thinking about since the Glenn. (Poor Dr. Licht is going to be in for a surprise when he sees our list of questions!!) </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFXKMUoPc8Ko2V3KNMgu0mbRr2pMHtNQeivXoLQX2EkwbpM_0w0uI-efUJ8tNt_TT-lc89P1Me64eMzCPaySNjAr_kEbrLF-GwAOd2SpUK-LvLsoKc7dywWJ-VaW9lASqKxc9VheKALbDx/s1600/IMG_0388.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFXKMUoPc8Ko2V3KNMgu0mbRr2pMHtNQeivXoLQX2EkwbpM_0w0uI-efUJ8tNt_TT-lc89P1Me64eMzCPaySNjAr_kEbrLF-GwAOd2SpUK-LvLsoKc7dywWJ-VaW9lASqKxc9VheKALbDx/s1600/IMG_0388.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's all ready for the plane ride with his headphones on!</td></tr>
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After that, we will be on our merry way to pre-op. Obviously I'm being completely sarcastic and I dread pre-op labs as much as the cath itself. The blood draw is always so traumatic and scary for Jensen, plus he will likely need an echo and x-ray. Here's to hoping he cooperates. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1aW7iJ2uRduCu9hVhtk5Evg2Vr_ri58DcIviFiipwapvuke7DlBUyzex-q9RA3d4eTifhYOwbQ7rMBLBqIesR5PPlYaNNNU5FK7_0k5plzVXEFQKpoXFgvwGA3YfrB1qZ951HpQojtnI1/s1600/IMG_0371.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1aW7iJ2uRduCu9hVhtk5Evg2Vr_ri58DcIviFiipwapvuke7DlBUyzex-q9RA3d4eTifhYOwbQ7rMBLBqIesR5PPlYaNNNU5FK7_0k5plzVXEFQKpoXFgvwGA3YfrB1qZ951HpQojtnI1/s1600/IMG_0371.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was after a recent blood draw :(</td></tr>
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The cath will be on Friday, we won't know what time until Thursday so I will keep everyone updated. Speaking of updates, I started a group on Facebook called Willis Family Heart (just like our blog so it is easy to remember!). This is an easier way for me to give quick updates and post pictures when I don't have a long blog's worth of info to share. We will still be doing detailed blogs,especially with the Fontan coming up and the links will be on my personal FB and the FB group. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJuZU6BWsDD4vra6QBEeU32LPpeg0eJQqw3DjFAi-yRtVNV57P7CiUMXHefuFvpR4BPr2dlZhaEZzV989SPirOJJSbmQ4PIhEvSHP3esejrDUB2j-JUpvZ1EGU2lgie_ExLRleuSd1vrwP/s1600/IMG_0395.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJuZU6BWsDD4vra6QBEeU32LPpeg0eJQqw3DjFAi-yRtVNV57P7CiUMXHefuFvpR4BPr2dlZhaEZzV989SPirOJJSbmQ4PIhEvSHP3esejrDUB2j-JUpvZ1EGU2lgie_ExLRleuSd1vrwP/s1600/IMG_0395.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ready for cold Philly weather</td></tr>
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Please keep us in your prayers as we travel and as Jensen goes through all of these procedures.</div>
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<br />Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-5577632466471931162014-01-02T23:28:00.001-05:002014-01-02T23:28:39.202-05:00Ready or not, here comes 2014.<div style="text-align: center;">
Yes, my new year post is a little late. Jensen is still on a present high from Christmas and on a terrible schedule from all of the traveling. Its been a learning experience this holiday season, to say the least! (also I'm just adding some random favorite pictures from the last month for you to enjoy!)</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkAYBd5jjqfAl4UMUmqcZ0D1HyUHTYqsW5aUqdyqn9ZU4P69jsETnXtigVweIBQldWcpf-lHmmwFb3daDjJobFunR99oOgPo0ufQBe1rFSM8oGavZZnSi0yKfHpEbvgQCRA_neugKttWcW/s1600/IMG_0002.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkAYBd5jjqfAl4UMUmqcZ0D1HyUHTYqsW5aUqdyqn9ZU4P69jsETnXtigVweIBQldWcpf-lHmmwFb3daDjJobFunR99oOgPo0ufQBe1rFSM8oGavZZnSi0yKfHpEbvgQCRA_neugKttWcW/s320/IMG_0002.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's too cool for school.</td></tr>
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The truth is I've been dreading 2014. I've been dreading thinking about it, writing about it, living it. 2013 was "our year". Our goal as a family was to let Jensen experience all that toddler life has to offer, give him every opportunity, have fun every day and to have no hospital stays. We lived up to that goal and so much more. Jensen did amazing things in 2013, more than this proud mama could ramble on about in one blog. We were so incredibly, blissfully enjoying the care-free life we were living, watching Jensen explore and learn about the world around him.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2d70_qacf0RiivDtmtOQRFirD8pEyFOnPrltXxDeIIhntnFSN3HP2BgeZaXKvgLmycVjV7SNvjuJ09toBHDlXwkWhPrwNNHETgAZVOcv3TjREch-D46Je4fThbPQPCsYUSYznhlAVsg1d/s1600/IMG_0023.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2d70_qacf0RiivDtmtOQRFirD8pEyFOnPrltXxDeIIhntnFSN3HP2BgeZaXKvgLmycVjV7SNvjuJ09toBHDlXwkWhPrwNNHETgAZVOcv3TjREch-D46Je4fThbPQPCsYUSYznhlAVsg1d/s320/IMG_0023.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Twins!</td></tr>
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As I mentioned in my Christmas post, things have shifted. The closer we get to 2014 the more anxiety builds. The more his sats drop. The more I start to panic about what is to come. Can't we just turn the clock back a little? </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbpQncANELAIHlzdLL1MDBO0VcD2tiLwNiTa76inoTVdNvwDFgcExTLWATtK1fCD2bC1REwkJ_MbaRD3RIFbZX5P-Jigu3VX6Zg9vuennOA5twQhRdsNDN2hL1fo8VDihXvoe1sI5fyERv/s1600/IMG_0042.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbpQncANELAIHlzdLL1MDBO0VcD2tiLwNiTa76inoTVdNvwDFgcExTLWATtK1fCD2bC1REwkJ_MbaRD3RIFbZX5P-Jigu3VX6Zg9vuennOA5twQhRdsNDN2hL1fo8VDihXvoe1sI5fyERv/s320/IMG_0042.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's an opportunist and found Santa's leftover cookie.</td></tr>
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2014 is the year of the Fontan. Since his Glenn people would ask about his next surgery and we would nonchalantly say, "Oh it will be spring/summer of 2014" and go on about our day. Well that time is here and it makes me want to puke. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNAW5KLHx9JArdc8G8YzeFwxpqVi94rnEYr5MXSenKUmeBwVV466h3pVxS2mYilcF7tNUUZaeBpO61y8ygydT9-_re_YhXkciuYOnF-GsSPEG2mPAlwdS__nF48jZ2hQ1TNmz-djWngK1j/s1600/IMG_0052.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNAW5KLHx9JArdc8G8YzeFwxpqVi94rnEYr5MXSenKUmeBwVV466h3pVxS2mYilcF7tNUUZaeBpO61y8ygydT9-_re_YhXkciuYOnF-GsSPEG2mPAlwdS__nF48jZ2hQ1TNmz-djWngK1j/s320/IMG_0052.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Serious bed head.</td></tr>
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We are still in planning mode and no decisions have been made. We are waiting on calls back from doctors' offices and letters to be sent. We are slowly walking down this old familiar path. No reason to rush...we are taking things easy... <b>Except I'm a heart mom and any one of us will tell you that 6 months prior to surgery we all gain 1000 pounds from stress eating and none of us sleep...ever. </b></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7IKmv1yjQdZmnLDsDDGi1ubgobLnkCZP_Gybb8eWheCuaE39gyaVaFVkPCW5OHdZwzTIxDjMu_V4mbjp3y9eSSnik53IiOvOiWFxwJl2Aw4lmrQzoTRawoXQRAoIzda4GGbsmH7sq5pZu/s1600/IMG_0058.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7IKmv1yjQdZmnLDsDDGi1ubgobLnkCZP_Gybb8eWheCuaE39gyaVaFVkPCW5OHdZwzTIxDjMu_V4mbjp3y9eSSnik53IiOvOiWFxwJl2Aw4lmrQzoTRawoXQRAoIzda4GGbsmH7sq5pZu/s320/IMG_0058.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jensen <3s Thomas!</td></tr>
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I have a hard time describing what it feels like to go back to this place for the third time (5th if you count the actual number of surgeries he has had). Everything about this surgery is hard. The cath he will need before the surgery comes with its own set of risks. The pre-op blood work is so scary for him. Handing him over to anesthesia. Getting through scar tissue from previous surgeries. His pesky pulmonary arteries that Dr. Fuller hand-crafted<b> </b>to save his life. The Fontan itself. The neurological complications he's very likely to have. I haven't even mentioned the recovery, the physical setbacks, the pain, the trauma, the night terrors. I could go on and on but you get the idea. Every aspect of this surgery is so excruciating for all of us. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn4ahnQwXoFAQrrYwmR7UkK3HhHzP8w-AY6nz0O547PFm-2E5UGSCtdlCIYbpceAIqaRufVPKp0M6g8HJdnRENWzaBr8O-7PxagWP7PcJheDHH6e6eYvWXz0UkHCUQu0v0rXuclRScG0bQ/s1600/IMG_0069.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn4ahnQwXoFAQrrYwmR7UkK3HhHzP8w-AY6nz0O547PFm-2E5UGSCtdlCIYbpceAIqaRufVPKp0M6g8HJdnRENWzaBr8O-7PxagWP7PcJheDHH6e6eYvWXz0UkHCUQu0v0rXuclRScG0bQ/s320/IMG_0069.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's the happiest boy in the world!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFYIKcHyT5-qge1gtgIiBDV1AuBzBMhmncd2bL7zq6hr9ZWmYd27z5ONzD1CV1j-bk-ae6aTY9gd2qtkUMvh1T8rnAbROIeecxB9v9zCFQaqjG6Ma0GDYRjBW7tTxdLiiGRE9dQM759hi3/s1600/IMG_5112.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFYIKcHyT5-qge1gtgIiBDV1AuBzBMhmncd2bL7zq6hr9ZWmYd27z5ONzD1CV1j-bk-ae6aTY9gd2qtkUMvh1T8rnAbROIeecxB9v9zCFQaqjG6Ma0GDYRjBW7tTxdLiiGRE9dQM759hi3/s320/IMG_5112.jpg" width="240" /></a></div>
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So here are our goals for 2014: having a successful Fontan, getting Jensen through his recovery and back to his old self as quickly and easily as possible, and finishing out the year happy & healthy. Here's what we are asking of you: pray for us. We need an army praying for us. This will be our greatest challenge as a family and I know we will need love & support more than ever. You all have brought us through dark times before so we are calling on you again. We know you all love Jensen like we do and we just want our boy to get through this as painlessly as possible. Thank you in advance for your prayers <3 We will keep everyone updated as we get more information!</div>
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<tr><td class="tr-caption" style="text-align: center;">Love this picture of him and his cousin Payton!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">And cruisin on his new Harley =)</td></tr>
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<br />Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-9530926309543393402013-12-24T14:34:00.002-05:002013-12-24T14:34:59.519-05:00Merry Christmas from the Willis Family!<div style="text-align: center;">
I hope you are all enjoying the holidays with your family! I'm sitting in my kitchen, cookies baking in the oven, Jensen taking a nap, and my husband in the next room...we are abundantly blessed! We are all healthy and all under one roof, we couldn't ask for more than that.</div>
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Things have been going so well, there hasn't been much to update on until this past week. Jensen is still doing great but we have noticed he's slowing down a little. He's more winded from his normal activities, even bending down to pick up a toy causes him to breath heavily. Of course he is still running everywhere, playing like a madman & always being silly. We are just starting to see that we are getting close to needing his Fontan. Its a reality check after many months of relative normal. </div>
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He had an echo and as per usual with a squirmy toddler, not all of the arteries were visible. His left pulmonary artery and aortic arch have always been areas of concern and of course, we weren't able to visualize those. They were able to see that one of his valves that was had a mild leak before now has a mild-moderate leak. Its something we will be keeping an eye on. Our local team is sending the results to our Philly team and we are going to see what they want to do. Our local cardio recommended a cath so that we could go ahead and get an idea of where he stands leading up to the Fontan. This would also give them an opportunity to stent/open any narrow areas (which we suspect he has). </div>
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To give you an idea of how he's doing, over the summer Jensen was satting around 85 consistently (and often times higher). Now he stays around low 80s but has been dipping into the 70s more frequently. There is no reason to rush, he's still doing well overall. We are just getting close to that time where we start planning timelines, looking at plane tickets, getting referrals...ugh. Its all so daunting even though we have done this so many times. </div>
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Even with the Fontan looming and Jensen's blue lips staring us in the face, we aren't worrying about that right now. We are choosing to make this Christmas amazing for Jensen. Of course last year he was still too young to understand anything that was going on. This year he's still a little young to fully understand Christmas but he does love Christmas lights, our tree, unwrapping presents, etc. We are so excited to make this year fun for him =)</div>
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We have had our Christmas lights up since before Thanksgiving and we have a small army of light-up Christmas characters standing guard at our house. He waves at them through the window every day. He tries to sneak and unwrap presents. He waves at his Thomas wrapping paper. He is so much fun to watch! Everything is so new and so exciting for him, which of course, makes us super excited about celebrating Christmas together. </div>
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We want to thank you all for another year of support & prayers. We are so blessed to have Jensen here with us this Christmas. I ask that you please pray for those heart families who are missing their warriors during the holidays. Also, please remember those families who are spending the holidays in the hospital. We love you all and wish you a very MERRY CHRISTMAS!</div>
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<br />Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-36706254435872276452013-10-22T23:06:00.001-04:002013-10-22T23:06:10.770-04:00He's in his 20s<div class="separator" style="clear: both; text-align: center;">
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...months that is! Jensen is 20 months old today! How is that possible?! I can't believe my baby boy will be turning 2 soon. We haven't done much in the way of updating because there's not a lot to update on...which is just how we like it! </div>
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<tr><td class="tr-caption" style="text-align: center;">Just sittin in the bed of my truck with no pants on and eating applesauce. No big deal.</td></tr>
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Jensen's last cardiology appointment went well. He didn't need an echo
since he had a very detailed one in Philly in July. His sats have been
high which is amazing & we don't go back until December! His pediatrician visits have also gone well. He
had a hard time with the changing seasons and had a croupy cough that
kept him up all night and out of breath for a couple of weeks. I was so
afraid he would need to be admitted for oxygen but my strong guy pulled
through like a champ and we avoided a hospital stay. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimpGEqBezAZiZTDEVHyJzdbdwZzXWMkVMB-gvQShKMVFgBklJYaIm-1xLpkf2dTPPQV6gZfQOGSrRHcoxfDdTOZ3lROMXrd6W5Wi2vI-0pTNOKlhA8XUyq-E7iAMZw4MTKngOhVYpQ-n1s/s1600/DSC_0258.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimpGEqBezAZiZTDEVHyJzdbdwZzXWMkVMB-gvQShKMVFgBklJYaIm-1xLpkf2dTPPQV6gZfQOGSrRHcoxfDdTOZ3lROMXrd6W5Wi2vI-0pTNOKlhA8XUyq-E7iAMZw4MTKngOhVYpQ-n1s/s320/DSC_0258.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yes that is a lizard. Ew.</td></tr>
</tbody></table>
<div style="text-align: center;">
Jensen is now in speech therapy & physical therapy weekly and occupational therapy bi-weekly. He's improving by leaps and bounds each week! One of his therapists actually said she has never seen a kid have such big improvements every.single.week. like he does. Yep, I got all teary eyed hearing that.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbaTLPWemcPUHu9TWRLxRwJZGHGnxfteU_FSLi9Wh4bqYPYn3rGPWE1DSmtR_X3BUA4BJtmpLhgrPyCf870a_TO1jtTWaHPEy0b-YKJ-Qfhb6_VgDudTm-GqL8CsTJNiDyYh5wbGdPWgzE/s1600/DSC_0279.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbaTLPWemcPUHu9TWRLxRwJZGHGnxfteU_FSLi9Wh4bqYPYn3rGPWE1DSmtR_X3BUA4BJtmpLhgrPyCf870a_TO1jtTWaHPEy0b-YKJ-Qfhb6_VgDudTm-GqL8CsTJNiDyYh5wbGdPWgzE/s320/DSC_0279.JPG" width="320" /></a></div>
<div style="text-align: center;">
Jensen is the most delayed in his speech, he is just now starting to say real words (other than mama and dada). I'm happy to announce that his first word was "BOOK". What can I say? He's a genius. He knows tons of signs and is very enthusiastic to learn more signs. However, we are pushing him to vocalize more because we know from his frequent screaming tantrums that he has the ability to talk, now its just about making him do it. Easier said than done.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCWaeqoDyFdghEwF6xtT3UWVlES0HdpE-PhVJjNCGx0FoBTJBhuzvkKrWFz7H5TgS5bOsV4knMTSqg2XiAAN5Yb-W0v3b3fxGOE7dpBcA_uhyphenhyphen1GtDCB72m5KCWovynjWzY8FYESfvGrVfU/s1600/DSC_0315.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCWaeqoDyFdghEwF6xtT3UWVlES0HdpE-PhVJjNCGx0FoBTJBhuzvkKrWFz7H5TgS5bOsV4knMTSqg2XiAAN5Yb-W0v3b3fxGOE7dpBcA_uhyphenhyphen1GtDCB72m5KCWovynjWzY8FYESfvGrVfU/s320/DSC_0315.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Exhibit A. Screaming tantrum. Notice the exaggerated arch in the back. Classic sign that a glass-shattering scream is on its way!</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2QnDG1gK3gzdBHJpiqpinoOKTGjBXuWva4_vapFrIMdhiT8tswT29UR3Er9_lJY2Q7snJ082fBaHx6T5ZOhi25MDw3Ox7Ha4bqDnzLfE7nyVDvl65HIk_pAUkKBFQkd3msOSO4SO3fVP_/s1600/DSC_0364.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2QnDG1gK3gzdBHJpiqpinoOKTGjBXuWva4_vapFrIMdhiT8tswT29UR3Er9_lJY2Q7snJ082fBaHx6T5ZOhi25MDw3Ox7Ha4bqDnzLfE7nyVDvl65HIk_pAUkKBFQkd3msOSO4SO3fVP_/s320/DSC_0364.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Its a rough life being a toddler.</td></tr>
</tbody></table>
<div style="text-align: center;">
As far as PT goes, Jensen is catching up and FAST! He can almost run! He is learning to stomp his feet, climb on and off of things, and his balance has improved tremendously! He's so much fun to watch at this stage because he learns so quickly. He is such an active little booger and I am loving it!!</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ88wotWWD6vtJAlCVO5DEp0toeyw66xj_z2RO47QYxVQatisXVuFn3AwoFN0cac92cO24UwJ1FaSY0jK9KTwHWaOzowSq7cGgPBKb-nSkWWvmuvWc-ktrCP6CpUNftHcO08hB7bSZDdIO/s1600/DSC_0413.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ88wotWWD6vtJAlCVO5DEp0toeyw66xj_z2RO47QYxVQatisXVuFn3AwoFN0cac92cO24UwJ1FaSY0jK9KTwHWaOzowSq7cGgPBKb-nSkWWvmuvWc-ktrCP6CpUNftHcO08hB7bSZDdIO/s320/DSC_0413.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here he is NOT getting kisses from his cousin Adi! hah!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div style="text-align: center;">
OT is also going very well. He's been practicing fine motor skills and coordination and is catching up to where he should be developmentally. His biggest concern for OT is sensory issues. We are learning that a lot of his behaviors are the result of over-stimulation/past trauma from surgeries and much more. He tends to lose his ever-loving-toddler mind more quickly than other kids his age. He is still somewhat sensitive about loud noises. He has separation anxiety far worse than you would expect for a kid his age. Hospital life really did a number on him. All of that being said, he's making HUGE improvements. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpIQNXSKfey4kFTt60563VReSzvgQdLntpOUtaWB4XmRwFmadDVDB4sownmd2l2LgH7It_7qAbYYEM0pc0V7xb7VwLtd8VIFc9RRjMlCGelVMPzIsFP_A5PPqmthhl9mdHUx113i-M3DPX/s1600/DSC_0700.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpIQNXSKfey4kFTt60563VReSzvgQdLntpOUtaWB4XmRwFmadDVDB4sownmd2l2LgH7It_7qAbYYEM0pc0V7xb7VwLtd8VIFc9RRjMlCGelVMPzIsFP_A5PPqmthhl9mdHUx113i-M3DPX/s320/DSC_0700.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cutest. Kid.Ever. We did a practice run in his monkey Halloween costume and he rocked it!</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div style="text-align: center;">
We are learning to pick our battles, expand his attention span, and help give him control over his environment. Its amazing how one little tweak in his routine can get him back on track and doing what he's supposed to be doing. (I am really loving our occupational therapist for all of her amazing tips!) Jensen is still a toddler and has toddler meltdowns, but I can already see that he's less fearful and timid in new situations. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsRxFvM0CZ9Kk2odDSiJGABXEz0UwE176RTHPqt-8tXxafVVamwytWBbXChD9zGo3R7iH4hKS7Gye3d_FbvrGYj0vB3wt1FDHRyuf2JPhGqnQL9ei0Of7tNjZhIwOBEy_2xOCQDFF3kw6h/s1600/DSC_0438.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsRxFvM0CZ9Kk2odDSiJGABXEz0UwE176RTHPqt-8tXxafVVamwytWBbXChD9zGo3R7iH4hKS7Gye3d_FbvrGYj0vB3wt1FDHRyuf2JPhGqnQL9ei0Of7tNjZhIwOBEy_2xOCQDFF3kw6h/s320/DSC_0438.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's signing "big truck" here. Because anything with wheels makes him smile =)</td></tr>
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<div style="text-align: center;">
Jensen has had so much fun lately. We do weekly trips to Marbles Kids Museum, we've already been to 2 different corn mazes this fall, spent lots of time with the grandparents & he went to the fair here in NC. Also on his list of most fun activities is watching the construction trucks go up and down our street. Seriously, we watched dump trucks come and go for 30 minutes today! Haha! Fascinating stuff!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3yg7uQ53MrTIyQsXw7AkPjjcEDhIlrO-MFlowkM5E2f2rMCvmgoQZsoF7A_fxGO0AJ-G4Up45IkgW_QWxDVU_BFc5YR-c7dhks6lL0X8L_lMu8QsC8yhtTcfwoK6xEbyj0iiMEDnT1FyF/s1600/DSC_0690.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3yg7uQ53MrTIyQsXw7AkPjjcEDhIlrO-MFlowkM5E2f2rMCvmgoQZsoF7A_fxGO0AJ-G4Up45IkgW_QWxDVU_BFc5YR-c7dhks6lL0X8L_lMu8QsC8yhtTcfwoK6xEbyj0iiMEDnT1FyF/s320/DSC_0690.jpg" width="212" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8kPBk-OuN1iAMnIJd8azey6Ud3Xlc6xwMCa6lZ5WE76LMQ5AGS9Ej6HtMytjeIvwurrbA4UK6yg1b5-iD7wMD5-aaDBG7OGLKwHy3Hsh_DN-S7_PpAshU0rlen8X4QMzyXFRnTnNIj34y/s1600/DSC_0445.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8kPBk-OuN1iAMnIJd8azey6Ud3Xlc6xwMCa6lZ5WE76LMQ5AGS9Ej6HtMytjeIvwurrbA4UK6yg1b5-iD7wMD5-aaDBG7OGLKwHy3Hsh_DN-S7_PpAshU0rlen8X4QMzyXFRnTnNIj34y/s320/DSC_0445.JPG" width="320" /></a></div>
<div style="text-align: center;">
I hope you all are having as much fun this fall as we are! </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEMKeBxKeeE3vIHGah1YcdQ50xGcYVvcjc0VIULRm0b_mrTJ6Sus-F7697YD5A42UXQ80LoqXxvpIsZQnZ0NaE5Y84FHFdb6QmYxpnGHqxRE5pMk1eYSzaH-0kRZs6mGDGa5BKV6F-RpiP/s1600/DSC_0521.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEMKeBxKeeE3vIHGah1YcdQ50xGcYVvcjc0VIULRm0b_mrTJ6Sus-F7697YD5A42UXQ80LoqXxvpIsZQnZ0NaE5Y84FHFdb6QmYxpnGHqxRE5pMk1eYSzaH-0kRZs6mGDGa5BKV6F-RpiP/s320/DSC_0521.jpg" width="212" /></a></div>
<div style="text-align: center;">
One last note, I'm requesting prayers for my sweet cousin Brooke. She was recently diagnosed with a kidney disease that will require a transplant. She is so previous and so young, please keep her and our family in your prayers. This has all happened very suddenly and I'm praying that a new kidney is just what she needs to get back to her life. Thank you all <3 <a href="http://www.caringbridge.org/visit/hopeforbrookie">Here</a> is her Caring Bridge page if you want to follow her.</div>
<br />Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-84181860899450727712013-08-22T00:46:00.002-04:002013-08-22T00:47:58.057-04:00A day in the life<div class="separator" style="clear: both; text-align: center;">
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<div style="text-align: center;">
Jensen is now 18 months old!!
That seems so unreal to me, where has the time gone?! So I thought I
would do a photoblog to show you what its like being a super cute
superhero!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRiX_-prFAY3CE7qh2NUJdQUx-F6lyMQip3xdMDpQGen1_-z62yqiMDSNWH545QMQbTHieCibmaWoO-sRIVTbgFKOfJxLPZn8tRmvavcczyeIde3GDBzlo6gV0Ghq80hxZzF8rHFs8jMPM/s1600/DSC_0215.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRiX_-prFAY3CE7qh2NUJdQUx-F6lyMQip3xdMDpQGen1_-z62yqiMDSNWH545QMQbTHieCibmaWoO-sRIVTbgFKOfJxLPZn8tRmvavcczyeIde3GDBzlo6gV0Ghq80hxZzF8rHFs8jMPM/s320/DSC_0215.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We do this almost every day. He loves to walk laps around the yard while pushing his toy (which he totally doesn't need to walk, but he insists on pushing it everywhere!)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmdYQS9e887kPxu1Ime4kSs783jtUeIUIxvPsXtTUqRe64FeTh2i3fC-ZI2rBxFplvbz6Qu9risBGcHkG-IGV5KW0_NgNadM2n1c_ksjYT1sHOlx1sMQERJ2GdbMhwxPPNQaWgChd6pCEc/s1600/DSC_0251.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmdYQS9e887kPxu1Ime4kSs783jtUeIUIxvPsXtTUqRe64FeTh2i3fC-ZI2rBxFplvbz6Qu9risBGcHkG-IGV5KW0_NgNadM2n1c_ksjYT1sHOlx1sMQERJ2GdbMhwxPPNQaWgChd6pCEc/s320/DSC_0251.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love that fluffy cloth diaper butt of his!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtXDYyEdrWndl6g9oJZO17jUmDZ618EjhzFrXZtZXzBOrbrujAxyI5q0AuivVKpDei87uaNkOMs2n0Kh8FRtwE9JXo_xQZGNha8wWd9P2EE3IP6W2WaflVPqhYCG-JZ4Ou1dQ_8OViEYol/s1600/DSC_0224.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtXDYyEdrWndl6g9oJZO17jUmDZ618EjhzFrXZtZXzBOrbrujAxyI5q0AuivVKpDei87uaNkOMs2n0Kh8FRtwE9JXo_xQZGNha8wWd9P2EE3IP6W2WaflVPqhYCG-JZ4Ou1dQ_8OViEYol/s320/DSC_0224.JPG" width="320" /></a></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg16eeuXJ-_q7mBgwueCUOF51wMY8KrLEszX6uBh1w9uHoluHAIRwZ3y_MVe3IN85kFzrbXDCFTfFIl_bNKlLdo3mVkGK3PYEvCD_nVaLaL6XiwXTSCAOMNF69ZtWi3qrmxB1eavrxyEYp/s1600/DSC_0229.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg16eeuXJ-_q7mBgwueCUOF51wMY8KrLEszX6uBh1w9uHoluHAIRwZ3y_MVe3IN85kFzrbXDCFTfFIl_bNKlLdo3mVkGK3PYEvCD_nVaLaL6XiwXTSCAOMNF69ZtWi3qrmxB1eavrxyEYp/s320/DSC_0229.JPG" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh0W805-LARdd_BEjfKITJh_zhvl-DavBv0d_RHlg6u2noFQhK5HP3BvYsvbYLXKQkm1OMXB12ouYWti6KgwTmmia6oy2WFdf-8K9bzIjuefNn-mHimEbR9ImUYDUboeN6IiHoIk_nfNBL/s1600/DSC_0297.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh0W805-LARdd_BEjfKITJh_zhvl-DavBv0d_RHlg6u2noFQhK5HP3BvYsvbYLXKQkm1OMXB12ouYWti6KgwTmmia6oy2WFdf-8K9bzIjuefNn-mHimEbR9ImUYDUboeN6IiHoIk_nfNBL/s320/DSC_0297.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I wasn't kidding, he LOVES to push this thing around every day!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn1r_JR89M6DFrFQHfpUYv98dKrBRnK5EIIv2qBlBsTN3eYerkahEcQ4pdrAaFZUdz55KoG0g7x1XScNYef17u-YWTN-hHCXha32SifrKX4WOjgNJTVDiS0zzuVyoz_SIubC07GNNthHs1/s1600/DSC_0318.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn1r_JR89M6DFrFQHfpUYv98dKrBRnK5EIIv2qBlBsTN3eYerkahEcQ4pdrAaFZUdz55KoG0g7x1XScNYef17u-YWTN-hHCXha32SifrKX4WOjgNJTVDiS0zzuVyoz_SIubC07GNNthHs1/s320/DSC_0318.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Any time he hears a car (or lawn mower or airplane) he starts waving! He's the neighborhood greeter! </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRrmMi78sp4grQF16v3ztbHGN2k6OI5ozSDQ7zraUibginY4cd9iaXdUgsaEQPdJGj_LsJTLH82FyKYs9mp7oN87g0-HYLfdGfFKxxgP5KbjgrJ4-1fq-qGxFlTZbBOaaPkCrTApqkH6wo/s1600/DSC_0114.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRrmMi78sp4grQF16v3ztbHGN2k6OI5ozSDQ7zraUibginY4cd9iaXdUgsaEQPdJGj_LsJTLH82FyKYs9mp7oN87g0-HYLfdGfFKxxgP5KbjgrJ4-1fq-qGxFlTZbBOaaPkCrTApqkH6wo/s320/DSC_0114.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He thinks mommy is hilarious =)</td></tr>
</tbody></table>
<div style="text-align: center;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8AZTv692PYzK_MGEgEM1dpo1Yq6H3UWDoJJFoaVayGn4ho22LxSTRRlw81qHkiYbw7HAsnl0Apd3cz6ydgtr950sZsh004kGiZVsgUp5Hlm7hniRBHw8QrKgNNzACbkI6nMiiQXFbkHEj/s1600/DSC_0003.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8AZTv692PYzK_MGEgEM1dpo1Yq6H3UWDoJJFoaVayGn4ho22LxSTRRlw81qHkiYbw7HAsnl0Apd3cz6ydgtr950sZsh004kGiZVsgUp5Hlm7hniRBHw8QrKgNNzACbkI6nMiiQXFbkHEj/s320/DSC_0003.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We read...all.the.time. His favorite book is Me & My Dad, closely followed by the Llama Llama books</td></tr>
</tbody></table>
<div style="text-align: center;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ7dkMqSgyZ_GtU6MaQwNON3-Sia-2ZRI_npJDR_sROymNW4dfF5VBsM0AkhyBd9i9zcfROZvf-uqbaNK3A7I1FjH2ahJSZphOvbR4x86oQ5OupuhNKrQGL2Y1Gy2WdC3BCikpcBly3NUk/s1600/DSC_0007.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ7dkMqSgyZ_GtU6MaQwNON3-Sia-2ZRI_npJDR_sROymNW4dfF5VBsM0AkhyBd9i9zcfROZvf-uqbaNK3A7I1FjH2ahJSZphOvbR4x86oQ5OupuhNKrQGL2Y1Gy2WdC3BCikpcBly3NUk/s320/DSC_0007.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jensen is busy being ridiculously gorgeous most of the day. </td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ipI7i8f2EAYkUkbsMAc-SIAfQj6Sfc4OnRQCoanpCzItr5mPiP1NXFy7weFG5b3tidYzp3bc1qTo0qG1MyhFAPcdBtcqdiH3BkFtdCfhth8VRM1L-Vm3dF3nYljW0vW7T8v6KOx6QA9d/s1600/DSC_0156.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ipI7i8f2EAYkUkbsMAc-SIAfQj6Sfc4OnRQCoanpCzItr5mPiP1NXFy7weFG5b3tidYzp3bc1qTo0qG1MyhFAPcdBtcqdiH3BkFtdCfhth8VRM1L-Vm3dF3nYljW0vW7T8v6KOx6QA9d/s320/DSC_0156.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yes...he loves to play with my phone. Elmo Calls is his favorite app. He signs "juice" to ask to play Elmo. How that association happened I have no idea??</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQaWDLqLVYB5DXnGHmPvxyDUqwb7QOTX2z7XH8K4UQtOf6SCYlKn431GiUcnc9sSlinSOdyiZZuHW1gk37vAVEv_ksB0V3KFzDeF8umN07fI8Un9cS4xLLolIce5i1_oZjeq-70-VQ5R55/s1600/DSC_0129.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQaWDLqLVYB5DXnGHmPvxyDUqwb7QOTX2z7XH8K4UQtOf6SCYlKn431GiUcnc9sSlinSOdyiZZuHW1gk37vAVEv_ksB0V3KFzDeF8umN07fI8Un9cS4xLLolIce5i1_oZjeq-70-VQ5R55/s320/DSC_0129.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is his mad face bc I took something away from him! He's got his daddy's temper ;)</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIL4X9ZyK5p5HO07f1vpsWBzM8B1UvNx-k2ZtihvPraU1GaAHqUv_-PK2fCLV28DX5xlyjE_idQkM55qqraVwoFkVDMTeD1JuR_eFETHdNZgmFgGc2syo6y8WE95TKWffQmWMthtMMwF9F/s1600/DSC_0260.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIL4X9ZyK5p5HO07f1vpsWBzM8B1UvNx-k2ZtihvPraU1GaAHqUv_-PK2fCLV28DX5xlyjE_idQkM55qqraVwoFkVDMTeD1JuR_eFETHdNZgmFgGc2syo6y8WE95TKWffQmWMthtMMwF9F/s320/DSC_0260.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's cheating! He puts the sign for "eat" and the sign for "more" together and this is what he does! Little stinker always finds shortcuts!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbXQAun60n5eo0654DPEwfxnJbrg4Q7SGMiBdvSlozSqcjtUDzWJlltEyp8Fmddg7tcgUpsc0GiWYm6VuwCwG82Ng6EJAybhlJLByp2k6507bEcAg7FL0iDLwvZJjqP7BurAZU-A8NKWPn/s1600/DSC_0267.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbXQAun60n5eo0654DPEwfxnJbrg4Q7SGMiBdvSlozSqcjtUDzWJlltEyp8Fmddg7tcgUpsc0GiWYm6VuwCwG82Ng6EJAybhlJLByp2k6507bEcAg7FL0iDLwvZJjqP7BurAZU-A8NKWPn/s320/DSC_0267.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This big smile is because I fed him roast and potatoes. He seriously love to eat!! </td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmlh6S9_IsifO3bHVMxnGntpO34jlaqtedIRVytJmIPbd1O6yhxlQs2JVYrIfN9WIEhL4oSicdQYAERSIMoGI9E6bGOFzhvLZifORU2pC8dgGdiNfkeA0ZasDcUJbgtqMmsHeEIfQvm4rR/s1600/DSC_0272.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmlh6S9_IsifO3bHVMxnGntpO34jlaqtedIRVytJmIPbd1O6yhxlQs2JVYrIfN9WIEhL4oSicdQYAERSIMoGI9E6bGOFzhvLZifORU2pC8dgGdiNfkeA0ZasDcUJbgtqMmsHeEIfQvm4rR/s320/DSC_0272.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's such a daredevil and loves to climb around on things</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBq95To6xyXnEFJCMmFsxxmruzalaayPaJSpobHrIgXntshQ1mwlE8oipCUbsFOjZIyhmmTiq-JHEbCZyWZQG55bwpk37DZAyuuc3dTAttNhnMzl0q07PS7I-3l2Yto2U-OufMHy2VMHRX/s1600/DSC_0288.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBq95To6xyXnEFJCMmFsxxmruzalaayPaJSpobHrIgXntshQ1mwlE8oipCUbsFOjZIyhmmTiq-JHEbCZyWZQG55bwpk37DZAyuuc3dTAttNhnMzl0q07PS7I-3l2Yto2U-OufMHy2VMHRX/s320/DSC_0288.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snackin' with Elmo</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi69X2sZnrMbObrcInZ_YYo28iA0XYrcxqgBUCU6siYBt6ry5ce6ZjhXDx0dg7Df6wlexAyH2CZ141NhTBIofbHNFYR-x86CszJxHBvUVkhegKKV3vVoKbkNJVQUxdHmTsiqfI99tJVyZn5/s1600/DSC_0304.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi69X2sZnrMbObrcInZ_YYo28iA0XYrcxqgBUCU6siYBt6ry5ce6ZjhXDx0dg7Df6wlexAyH2CZ141NhTBIofbHNFYR-x86CszJxHBvUVkhegKKV3vVoKbkNJVQUxdHmTsiqfI99tJVyZn5/s320/DSC_0304.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">While I'm cooking he likes to busy himself in the kitchen too. He gets out our boxes of K-Cups and throws them everywhere! We find coffee in odd places these days.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg78Wm6pW1juGSJFX1nboorJ_XkDKB2MAnn2GLaO7mvC3JQC8bOmYaAtTz1Ug7yhBg0nz61YhgR7RpJYqb2ljbST-YURnKUStn8cPKAiIz9EHpZ4t9KSSi6PZzJvc5kF5_mVhHylQt6_lc6/s1600/DSC_0339.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg78Wm6pW1juGSJFX1nboorJ_XkDKB2MAnn2GLaO7mvC3JQC8bOmYaAtTz1Ug7yhBg0nz61YhgR7RpJYqb2ljbST-YURnKUStn8cPKAiIz9EHpZ4t9KSSi6PZzJvc5kF5_mVhHylQt6_lc6/s320/DSC_0339.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Working on his ride =)</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDOZakCxv4jQql8_mw7OCOMpCtIL7q4VOyLimI_bM17aAe5Ah2m4woAMaQIvm5y0Zrm0fDkill-4j4wQpefFS-ozhILbyYpe3tofvaQLIzJYzsyfTstYCTOusqN820HzzsDUIL4b9y8Yq-/s1600/DSC_0319.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDOZakCxv4jQql8_mw7OCOMpCtIL7q4VOyLimI_bM17aAe5Ah2m4woAMaQIvm5y0Zrm0fDkill-4j4wQpefFS-ozhILbyYpe3tofvaQLIzJYzsyfTstYCTOusqN820HzzsDUIL4b9y8Yq-/s320/DSC_0319.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Showing me his scary face! hehe, I love it!</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1NTC3OtHKJYkRkwxwKSdzL0_sZ5AsxcfpZ9hqS2LVsLQbul5sFOd2BZ3Tz9fDHpa4nFR7ah9NFlgVKdjpe-E022KZYRd0uohapmqyTwnjqgOwzt0Tbqv_Y-GVuYhcu6AjxbMduQb4qcYG/s1600/DSC_0357.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1NTC3OtHKJYkRkwxwKSdzL0_sZ5AsxcfpZ9hqS2LVsLQbul5sFOd2BZ3Tz9fDHpa4nFR7ah9NFlgVKdjpe-E022KZYRd0uohapmqyTwnjqgOwzt0Tbqv_Y-GVuYhcu6AjxbMduQb4qcYG/s320/DSC_0357.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oh how he loves snacks</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg44LcMv0gft-k5yKl2KC2yJ5ugtFI11zI3UA3kzQonlgjcUDD1F5YPSZ0I81xq5gaZQqH8b6-JUpalbhM8KGmfIQ7WcxuAJZ1NVY-_AbQGZ86Yr3sJnv8ozSyNn9pm8Z0zr9BY-9aigdZF/s1600/DSC_0374.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg44LcMv0gft-k5yKl2KC2yJ5ugtFI11zI3UA3kzQonlgjcUDD1F5YPSZ0I81xq5gaZQqH8b6-JUpalbhM8KGmfIQ7WcxuAJZ1NVY-_AbQGZ86Yr3sJnv8ozSyNn9pm8Z0zr9BY-9aigdZF/s320/DSC_0374.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the look I get when I tell him no! He puffs his chest up like he's some kind of wild animal. Haha...there's only a certain amount of ferocity when you are wearing nothing but a Charlie Banana.</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4-vanwtIv5opOAeKqihusS5nynn_acLRnq4YgbMtcpeC9oes-3PzQ5P6tt3WLYJmPJLprXTTTnfTkzQWCeQwyuKzQlDnlpKmLphcFvEZwGVFOqvHBhmewT1V0OZs5Jx3wqWHzZdQ-S9bT/s1600/DSC_0379.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4-vanwtIv5opOAeKqihusS5nynn_acLRnq4YgbMtcpeC9oes-3PzQ5P6tt3WLYJmPJLprXTTTnfTkzQWCeQwyuKzQlDnlpKmLphcFvEZwGVFOqvHBhmewT1V0OZs5Jx3wqWHzZdQ-S9bT/s320/DSC_0379.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Its been so rainy this summer he's been sporting his rain gear a lot!</td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh206XfWG7QDIVJllRgchyphenhyphenGJLuzVT9uUSOWEBc3g2iFgPuF1iH96sPkC1bE7Vd98tg6W1JKjw3tjbBjA9IG1YLUuFpwKzgU13rDeV6kCfedxBzHlhyphenhyphenZU0Jt3x8mdIUqAEC_gxNsilGhb7bo/s1600/DSC_0287.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh206XfWG7QDIVJllRgchyphenhyphenGJLuzVT9uUSOWEBc3g2iFgPuF1iH96sPkC1bE7Vd98tg6W1JKjw3tjbBjA9IG1YLUuFpwKzgU13rDeV6kCfedxBzHlhyphenhyphenZU0Jt3x8mdIUqAEC_gxNsilGhb7bo/s320/DSC_0287.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rainy day ensemble #2</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkJP8hVnZ7Gl9-EWuVPxZZ23xNfvostFKl63qCsYLxe9VZxdZRVu-nhsAzoTMiaYn9XMNqUA3Swb8V1jiLbJxVuQXtAn8eS1_kf1CwT_6oFFS9UqwCrmvCT3Ie7zKEUnvbALhdB4rlXSAA/s320/DSC_0385.JPG" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And he also love the iPad. What can I say he's an Apple fan! His favorite app is Mr. Potato Head</td></tr>
</tbody></table>
<div style="text-align: center;">
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW-GTouHBqVsqLpV6hoSkuBLJXP5YJmjPCIlwJ8TBqB67RKbqtmVCku_WozA4wtAF4YVonW-6Vr7r86pGNMtqaOGjISCnS7as_79jZgxVKipMRmKKJ4_FOsTyXzCa7moPd77M_duh3NfNx/s1600/DSC_0087.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW-GTouHBqVsqLpV6hoSkuBLJXP5YJmjPCIlwJ8TBqB67RKbqtmVCku_WozA4wtAF4YVonW-6Vr7r86pGNMtqaOGjISCnS7as_79jZgxVKipMRmKKJ4_FOsTyXzCa7moPd77M_duh3NfNx/s320/DSC_0087.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I have to give him millions of kisses bc he's so darn irresistible!He likes to give kisses back, but he doesn't actually kiss you, he just makes the sound...its adorable.</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyAMK64R0Uhf2EWr1c7O0Wqyqvu95sEyzKNiZgF2UpSQuuUAFzYInGncmyWTPWdqDX0pT-UMTsaSh7H3BSlAlccE9F00nCRrR-AmFqZZkCO9MzsQ25qJcV7HAr19wLoB53YWSh_ISkaB0O/s1600/DSC_0073.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyAMK64R0Uhf2EWr1c7O0Wqyqvu95sEyzKNiZgF2UpSQuuUAFzYInGncmyWTPWdqDX0pT-UMTsaSh7H3BSlAlccE9F00nCRrR-AmFqZZkCO9MzsQ25qJcV7HAr19wLoB53YWSh_ISkaB0O/s320/DSC_0073.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is his "Bat-Mobile" that he loves to ride! He is also showing me his silly face haha!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik6-uqrMAbGYWEUsFkuRliOn-P-Bqw9qlyXAkcZ-V62J40lgqUKU0gClDDpsiRrZaCTaAAl0BP2_SpGrr6AWLuC9yWHitNIt6R8IJFLb5xcRMCJI_HCUnlCy9YHQ2PKApOERisNM4K0TQo/s1600/DSC_0097.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik6-uqrMAbGYWEUsFkuRliOn-P-Bqw9qlyXAkcZ-V62J40lgqUKU0gClDDpsiRrZaCTaAAl0BP2_SpGrr6AWLuC9yWHitNIt6R8IJFLb5xcRMCJI_HCUnlCy9YHQ2PKApOERisNM4K0TQo/s320/DSC_0097.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He crawls all over me! I'm his personal jungle gym!</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWte037WDbJDlIBdSy32ZH0jyw-P3flXC1aIuvVn9qs59rlvow5Fw1hrYsdWWkazCP5J_bjoeKm6zz7rOJwaG7wt65kpCpZyRxbip0vTAvo3EgCFECh7psHsxV_6YEpZK9G6p7E0ZiAVoz/s320/DSC_0243.JPG" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He love getting dirty! It makes me cringe but he has so much fun!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr align="center"><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYF93LZC7l7GN3XLMWDdkvidQ76NHRDhQCAPvqp0RGkb0F7RcYl2yyxF2Z9wizdJ4hA4QqZR6A87VD5Gb6tr84cujRKL_aRWOObTcBXDpLPqCEn1RFHU9C597SDpNm7Wcpx3pgd01mRU25/s1600/DSC_0127.JPG" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYF93LZC7l7GN3XLMWDdkvidQ76NHRDhQCAPvqp0RGkb0F7RcYl2yyxF2Z9wizdJ4hA4QqZR6A87VD5Gb6tr84cujRKL_aRWOObTcBXDpLPqCEn1RFHU9C597SDpNm7Wcpx3pgd01mRU25/s320/DSC_0127.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting some practice in...</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com1tag:blogger.com,1999:blog-2425182370764292559.post-13029040562340083562013-08-05T21:10:00.001-04:002013-08-05T21:10:43.001-04:00Whirlwind<div class="separator" style="clear: both; text-align: center;">
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Our Philly trip was so exhausting! I had all these plans of getting to relax and sight-see and shop. Not so much. It was a great trip but it took us a few days to recover from it! We stayed at the Sheraton in University City, which is where we always stay. I can't say enough good things about the staff there. They have gone above and beyond to make our stays as easy as possible. </div>
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<tr><td class="tr-caption" style="text-align: center;">Jensen hanging out in the hotel lobby</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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After a very long day at the airport on Friday, we got up early on Saturday for Heart & Mind Education Day at CHOP. Jensen stayed with my mom and I walked to CHOP all.by.myself. I realized on my walk that was the first time I had been away from Jensen in months...MONTHS!! I was like Mary Freakin' Poppins singing and skipping along on my baby-free way...it was glorious! (Yes I do love my child, but this mama needs a break! Thanks Mom!!)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_1GKxau6bjshrOt9PJucdlJ0tnWTSTjckfSIhBNjaNmny490iyCsrjV6iOcHqjURp4A9ZPn4HDlLZM12WZnnaYTZvkmHrn68Znqu-6Uj2ANQpNVjxHyok93_ues_QvBYv04lj__lPHEPV/s1600/IMG_4343.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_1GKxau6bjshrOt9PJucdlJ0tnWTSTjckfSIhBNjaNmny490iyCsrjV6iOcHqjURp4A9ZPn4HDlLZM12WZnnaYTZvkmHrn68Znqu-6Uj2ANQpNVjxHyok93_ues_QvBYv04lj__lPHEPV/s320/IMG_4343.JPG" width="180" /></a></div>
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There was so much I learned at this education day that I couldn't possibly summarize it all here. So here's a few of the most important things I learned:</div>
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1. CHOP is the most amazing children's hospital in the world (literally) and every time I am there, our decision to go there is reaffirmed a million times over. </div>
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2. The Single Ventricle Survivorship Program (headed up by our very own cardio Dr. Rychik) is pioneering the way for lifelong treatment of post-Fontan patients. They are setting screening protocols for follow up care to help catch any post-Fontan complications early. </div>
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This is one-of-a-kind stuff, people. </div>
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3. The future of kids like Jensen is more promising than ever before. This is a hard concept for me to grasp when I'm overwhelmed looking at all of the things that current post-Fontan patients in their 20s are dealing with. However, by the time Jensen reaches that stage, the CHD world will be so much further along because changes are happening now. Basically, it was a resounding message of HOPE. </div>
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<tr><td class="tr-caption" style="text-align: center;">He decided to take up climbing as a new skill while we were in Philly</td></tr>
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On Sunday we had a lovely brunch at White Dog Cafe, which is our absolute favorite restaurant! Jensen pigged out on a crab frittata, brioche toast, stuffed french toast & house made sausage. All of their food is locally grown and organic (my inner hippie approves of their menu).</div>
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What can I say, my boy has grown-up taste?</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht04QWLBV0zbYSlIwRx3QBy8dYIfPNOZOh-Wo3eCXvbk5ncLLc5AquUK9-xnHuNzb_HC9IfWuTaA8OooZwvKWWcqS3fFquMEu3tzGGYMQmg79hcrJHXYaICF6FQhhG7S-BSV1nnLn68lIe/s1600/IMG_4372.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht04QWLBV0zbYSlIwRx3QBy8dYIfPNOZOh-Wo3eCXvbk5ncLLc5AquUK9-xnHuNzb_HC9IfWuTaA8OooZwvKWWcqS3fFquMEu3tzGGYMQmg79hcrJHXYaICF6FQhhG7S-BSV1nnLn68lIe/s320/IMG_4372.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Having a blast in the hotel, he didn't even need toys!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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On Monday Jensen had his sedated echo. They used a gas to put him to sleep. The mask had to be held over his face and it was so heartbreaking to watch. He was fighting against them so hard, but thankfully he drifted off to sleep pretty quickly. The echo looked great! Dr. Fuller even looked at it herself and was pleased with his heart function. Jensen won't need to have another cath until he's ready for the Fontan, which will be spring/summer 2014.Shew! What a relief!</div>
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<tr><td class="tr-caption" style="text-align: center;">Sweet baby snuggles as he was waking up from the echo</td></tr>
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Jensen was unbelievably well-behaved on this trip. There were no incidents of crazy toddler tantrums or that familiar high-pitched scream that I always here when we are at Harris Teeter. He was so brave and dealt with all of the exams, poking, and tests that were required of him. He had a long day of developmental testing on Tuesday as part of a follow-up to a research study we are in. There were a lot of activities he was asked to do and certain toys he was supposed to play with & figure out. He was pretty cooperative and this mama was impressed!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgch5njz6CRNpCQ8gsyB4EXig4NLj57ypInJfTqC5CH9GsbdU9GfH5r4DZ1uVj6tqRBXN8Ko6eXAgCpiamyRo2Qh-9WycwQChzGdrwgLu_gCoe_uPn0dUpAYkNbXExaaDcRKeY1ehCYUjoA/s1600/DSCN2900.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgch5njz6CRNpCQ8gsyB4EXig4NLj57ypInJfTqC5CH9GsbdU9GfH5r4DZ1uVj6tqRBXN8Ko6eXAgCpiamyRo2Qh-9WycwQChzGdrwgLu_gCoe_uPn0dUpAYkNbXExaaDcRKeY1ehCYUjoA/s320/DSCN2900.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mouth full of Bobby's Burger Palace. 'Merica.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguqitMF_4nMDZ1pqyEG0BPONE-FIlYvEzMQcBcaOJrjW4YrInuRTkEOhnVsV9DmeNRndxuqCRFb-Yvq4kj431U34kE2kc5fquLaoSi4XSSpllYahyDYmjo-5T_8MPptE7AyQ4ZrUYamCy4/s1600/IMG_4376.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguqitMF_4nMDZ1pqyEG0BPONE-FIlYvEzMQcBcaOJrjW4YrInuRTkEOhnVsV9DmeNRndxuqCRFb-Yvq4kj431U34kE2kc5fquLaoSi4XSSpllYahyDYmjo-5T_8MPptE7AyQ4ZrUYamCy4/s320/IMG_4376.JPG" width="320" /></a></div>
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The developmental psychologist scored his global developmental age was 12 months. I thought this was pretty darn good considering all that this guy has been through. Let's recap: Jensen spent about 3 months in the hospital, mostly flat on his back, many weeks on sternal precautions after each surgery, suffered massive brain damage from Stage I & II surgeries, & is likely developmentally delayed just from having a heart defect in the first place. Can I get an "amen" for how amazing my boy is?!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfR7vqCFB0cxLDoaewJz1EoZHNkCJltdm8ApyB2NYIHe4WqjV3XGsJuBWFOW_0L3Rg7S3UuLy9qMDs6KlGRkSXjBQXhfm-zf5S6h9g_JqKLCNQY6F7hdY2VAM-SjMR-e70YTxNvf8EFqSg/s1600/DSCN2890.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfR7vqCFB0cxLDoaewJz1EoZHNkCJltdm8ApyB2NYIHe4WqjV3XGsJuBWFOW_0L3Rg7S3UuLy9qMDs6KlGRkSXjBQXhfm-zf5S6h9g_JqKLCNQY6F7hdY2VAM-SjMR-e70YTxNvf8EFqSg/s320/DSCN2890.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">FYI: Jensen was NOT a fan of the pool!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGcjtXGxFKjFUb032w5lUIjSuKSsu6NWBfxmftxk0giPguG77sxyErRlAVUbTJm5XvBNwNz2TFkPQWiM3Y6Oauo6hVMxd4fKFFuAjNk7RKq5hN-rVcSTnRTo5JP_o2b3xj0RntosN8ciT_/s1600/IMG_4339.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGcjtXGxFKjFUb032w5lUIjSuKSsu6NWBfxmftxk0giPguG77sxyErRlAVUbTJm5XvBNwNz2TFkPQWiM3Y6Oauo6hVMxd4fKFFuAjNk7RKq5hN-rVcSTnRTo5JP_o2b3xj0RntosN8ciT_/s320/IMG_4339.jpg" width="239" /> </a></td><td style="text-align: center;"> </td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's such a cool kid.</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Last but certainly not least, the best part of our trip...seeing Dr. Fuller! We got to meet up with her at Heart & Mind Day. Jensen was sporting a graphic tee specially made for her. The front said "Dr. Fuller's Future Husband" and the back said "She fixed my heart. I stole hers.". I thought it was just a cute idea and I knew she would love it. I had no idea how much of an impact this shirt would make! Dr. Fuller laughed because Jensen turned into a celebrity! Everyone was taking his picture and talking to him, the press people from CHOP had the photographer come down and snap the pic below, and everyone was amazed at how awesome he is doing! One cardiologist that saw his shirt cried (she had never even met him, she had just heard about him!)!! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg-QdqNSxZjFrZM7BPvDUMZH3noG7NGly2q2v7esRyXz4OSz0O9wGX-27ONM2IU5YF_aluxR4a2x7v6con0ftn47uvRTAxVqmPeeGcI_4zvjpsCj5E28v30Xcmodabr7-3ZmGegEJiyF5Y/s1600/IMG_4411.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg-QdqNSxZjFrZM7BPvDUMZH3noG7NGly2q2v7esRyXz4OSz0O9wGX-27ONM2IU5YF_aluxR4a2x7v6con0ftn47uvRTAxVqmPeeGcI_4zvjpsCj5E28v30Xcmodabr7-3ZmGegEJiyF5Y/s320/IMG_4411.JPG" width="213" /></a></div>
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I am the luckiest mom in the world to call him mine. He's done amazing things in his 17 months on this earth and I can't wait to see what his future holds. We are incredibly blessed to have such an amazing team in Philly, they have become our second family! </div>
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And seriously, who else thinks that Dr. Fuller and I could be sisters?! </div>
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<tr><td class="tr-caption" style="text-align: center;">I.Love.This.Lady.</td></tr>
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<br />Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-53453883771793220432013-07-18T00:27:00.001-04:002013-07-18T00:33:32.554-04:00More walking!<div style="font-size: 0.8em; line-height: 1.6em; margin: 0 0 10px 0; padding: 0;">
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<span style="margin: 0;"><a href="http://www.flickr.com/photos/63800991@N05/9310007907/">jensen walking</a> a video by <a href="http://www.flickr.com/photos/63800991@N05/">amyjo1050</a> on Flickr.</span><br />
I totally watch these videos on repeat once he goes to bed.This boy is such a miracle. I love him to pieces!</div>
Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-68001077623329538402013-07-18T00:12:00.001-04:002013-07-18T00:29:55.196-04:00Jensen is walking!!<div style="font-size: 0.8em; line-height: 1.6em; margin: 0 0 10px 0; padding: 0;">
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<span style="margin: 0;"><a href="http://www.flickr.com/photos/63800991@N05/9309924229/">Jensen is walking!!</a> a video by <a href="http://www.flickr.com/photos/63800991@N05/">amyjo1050</a> on Flickr.</span></div>
As promised, the video of Jensen walking! I couldn't be more proud of him! This was easily one of the best days of my life <3 <br />
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<!--3-->Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-74566920763202857282013-07-08T23:22:00.003-04:002013-07-08T23:22:41.910-04:00This boy's making strides!<div style="text-align: center;">
In the past month we have done a lot of totally normal, fun things =) Jensen is having a blast enjoying all this mommy play time! We have been to Marbles Kids Museum a couple times now and for those of you who are local, you need to plan a trip there! Its super fun and has activities for all ages, even little babes like Jensen. He's been splashing in his water table, working on holding a crayon correctly, feeding himself and learning sign language like a mad man!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkmRDrzknWYPLlf1ope0HXOkO7TCa0YXVaafISo-ncow4cr3lNMXJqbl5GkyC17VuzHP9MqscxHI2E5mj6rCrbCqFTgs7axtz2d3VV15KFC2QhKJBNSvdJmQH6wkarxBfk5pp-z2kdtZeL/s1600/DSCN2800.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkmRDrzknWYPLlf1ope0HXOkO7TCa0YXVaafISo-ncow4cr3lNMXJqbl5GkyC17VuzHP9MqscxHI2E5mj6rCrbCqFTgs7axtz2d3VV15KFC2QhKJBNSvdJmQH6wkarxBfk5pp-z2kdtZeL/s320/DSCN2800.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These are supposed to be instruments to help him walk....he would rather eat. Silly boy.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">He's going to be a ship captain one day. He loves to steer!</td></tr>
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Jensen recently took his first independent step <3 It was just that, one step. But in my eyes, it was a step toward achieving our goals. It was a step to show how far he's come. A step that made this mama instantly burst into tears and squeeze my kiddo until he started squirming out of my arms. It was incredible and amazing and beautiful and I could name a million other words to describe it. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyy7W1WVa4qLOS3a079KTIG5Bvt3NQZhoSwIS_wM9LULVyrIX-DdHy4rA7TVXPI952QRvrH5aiwoE45WLr0bNibjNJRitynVJ4KxsVTDmtpcb0wJN9_npLHwk42iP5wh_T5_KHFF2pciJk/s1600/DSCN2813.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyy7W1WVa4qLOS3a079KTIG5Bvt3NQZhoSwIS_wM9LULVyrIX-DdHy4rA7TVXPI952QRvrH5aiwoE45WLr0bNibjNJRitynVJ4KxsVTDmtpcb0wJN9_npLHwk42iP5wh_T5_KHFF2pciJk/s320/DSCN2813.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He asks me to read to him all the time...smarty pants =)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">You mean I didn't get it all into my mouth?</td></tr>
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I am so proud of that boy. He's stronger every day and his brain has healed in miraculous ways. Seeing him get closer and closer to walking brings me back to the days when he was on ECMO, swollen beyond recognition, and teetering on the edge. I saw the scans of his brain. Without any knowledge on how to read it, I could tell it was devastating. And now he's here. About to walk. Learning new signs every day. Trying to dress himself. Making connections. Growing up. I am so blessed.</div>
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<tr><td class="tr-caption" style="text-align: center;">He would rather stretch like this then have to take a few steps! He's so stubborn!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglUOgvEBFF9gDWwlOKHs_DXOaJpFYpkgpQ-mo0fsR-DnDNlUavQvvsZsRWsKpeXbnTCMKSQY888NTvdYZMrW3miAtsoWawlHJx6VtjpnAvBmYr8X2hCJmSQHvsLudweMN64qfrJnxe_4-W/s1600/DSCN2824.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglUOgvEBFF9gDWwlOKHs_DXOaJpFYpkgpQ-mo0fsR-DnDNlUavQvvsZsRWsKpeXbnTCMKSQY888NTvdYZMrW3miAtsoWawlHJx6VtjpnAvBmYr8X2hCJmSQHvsLudweMN64qfrJnxe_4-W/s320/DSCN2824.JPG" width="240" /></a></div>
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There are many heart moms who are struggling right now. So many of them with kids in surgery, on ECMO, struggling to gain weight, desatting as they near the next surgery, and so on. I wish I could just hug them all and tell them it gets better. Jensen is proof that it gets better. There will be struggles & more surgery ahead, but for now we are grateful for this time that he can enjoy such a normal, happy life. </div>
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<tr><td class="tr-caption" style="text-align: center;">He's so handsome </td></tr>
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Please continue to pray for the heart community. Specifically Jensen's heart buddies <a href="http://xaviersheartjourney.blogspot.com/">Xavier</a> and <a href="http://www.cotaforwestonk.com/node/538">Weston</a> need prayers, as do their families. I love my heart sisters Jackie and Julie and wish I could be with them at CHOP just to give them a hug =)</div>
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We will be heading to Philadelphia at the end of the month and I will be sure to update with plenty of pictures and details of our trip! And of course, any independent walking by a certain little boy will be cause for immediate blogging so the whole world knows of his accomplishments....stay tuned...</div>
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Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-53728966035396914132013-06-08T19:27:00.001-04:002013-06-08T19:27:07.276-04:00What's been happenin'<div style="text-align: center;">
First of all, I want to give a big THANK YOU to the Dorsett family at <a href="http://www.haydensheart.com/">Hayden's Heart</a>. They were so kind and chose to sponsor us for their latest fundraiser. This included an auction, carwash and bake sale. We were so touched by this family when we met them at CHOP and are so lucky to have them as friends. They have done such great things in Hayden's honor, I know he's proud. Please check out their page, share it, and read all about their heart angel Hayden. </div>
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<tr><td class="tr-caption" style="text-align: center;">Such a big boy now!</td></tr>
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Jensen has had several doctor's appts lately, it just worked that we went almost 3 months without seeing a single doctor and now we getting all of the specialists done in a matter of weeks! I can tell you that there is a big difference in a 12 month old and a 15 month old! He's developing so much personality and what I like to call his "toddler 'tude". He is such a good boy most of the time, but when he's bad...he makes it count! We've already had a few public meltdowns and screaming fits! Terrible twos?! Yea right, it starts way earlier than that.</div>
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<tr><td class="tr-caption" style="text-align: center;">Loving his new swing =)</td></tr>
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His pediatric appointment went awesome and he was a little angle! He sat perfectly still while his doctor listened to him and did the physical exam. He helped hold the stethoscope, as per usual. His head circumference was at the 11th percentile!! In case you don't remember, Jensen's head size was well below the growth charts for a while and not growing well at all. This was concerning given the amount of complications he's endured. However, he has slowly been making it up and his brain is growing! He also weighed in at just under 25 pounds. Another side note here: most cardiologists aim for a single ventricle kid to be around 30 pounds before they have the Fontan. Most people don't start performing Fontans until kids are two years old. Jensen is well on his way to reaching Fontan weight before his 2nd birthday and we are so grateful weight gain has not been an issue for him. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuySGXc0BgWJqWdqdHj1OKQMFiASqHx2VnQNgfZ0k1MTQX4JuzuICrhVYL8pA3oA9fjR4I3lCA0zE_TZfuNyC62UVhzu3OxsbNu79qSBfCTIXZG2VsDjdXXs_4yRD-NLcq676YroBM8x4Z/s1600/IMG_3751.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuySGXc0BgWJqWdqdHj1OKQMFiASqHx2VnQNgfZ0k1MTQX4JuzuICrhVYL8pA3oA9fjR4I3lCA0zE_TZfuNyC62UVhzu3OxsbNu79qSBfCTIXZG2VsDjdXXs_4yRD-NLcq676YroBM8x4Z/s320/IMG_3751.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He stands on his own for a few seconds at a time now!</td></tr>
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Next we had an appointment with a geneticist at Chapel Hill. I have felt strongly that Jensen has some type of genetic issue causing not just the heart defect, but the pulmonary artery issues and neuro issues. Its obvious that he doesn't have one of the major syndrome associated with HLHS like DiGeorge's, but my mommy instincts are never wrong and I know there's more to the story. I pushed for a long time to get this testing done and finally was able to get in! They are doing a broad test to see if they find anything, which most likely they will not. I am still anxious to hear the results and hopeful that this information will be useful when genetics catches up to the Heartland. </div>
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This geneticist was someone we had never seen before. It never gets old hearing how amazed people are when they meet Jensen, especially when they read his medical history first! She could not get over how "normal" he seems =) Proud mama moment for sure!</div>
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<tr><td class="tr-caption" style="text-align: center;">MAD AT MOMMY!</td></tr>
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Next we saw his cardiologist. The echo was a terrible experience and Jensen did not want to participate. We tried just about everything to get him to cooperate and they got very few usable images. From what Dr. Robinson could see on the echo, combined with his slightly lower sats, he recommended Jensen have a sedated echo. I had a feeling this was coming but it still is not what I wanted to hear. This means Jensen will be sedated, not completely under, but it is still heavy meds. I am in the process of trying to schedule this to be done at CHOP while we are there for a visit this summer. </div>
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<tr><td class="tr-caption" style="text-align: center;">You know, just shopping with Elmo.</td></tr>
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This echo will give us a better picture of what's going on with him. The stents need to be visualized, especially the left pulmonary artery. Dr. Robinson thinks that Jensen might need a cath sooner than we expected. (We weren't expecting to have to do a cath until around the Fontan, which would be next summer.) This is definitely a punch in the gut for us. This was supposed to be our year of normal baby activities and no hospital visits. I know there are much worse things and overall Jensen is doing pretty well, but it makes us so anxious thinking he might need ANOTHER cath. I can't help but think of all the risks that go along with it. </div>
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<tr><td class="tr-caption" style="text-align: center;">"All done!"</td></tr>
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Please keep Jensen in your prayers. We are hoping that he will not need another cardiac cath but if it needs to be done, please pray this will give him the boost he needs. Thank you all so much for your support, and we love you all Team Jensen =)</div>
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<br />Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-16340610423836170532013-05-13T19:49:00.004-04:002013-05-13T19:49:42.950-04:00Confessions of a really bad housewife...<div style="text-align: center;">
I like to think that while Jeremy's gone working that I'm "holding down the fort" and making my best efforts to fill the roles of both parents. Some days after Jensen goes to sleep I look around at my clean(ish) house and think to myself, "Hmm, not too shabby". Today...was not that kind of day. </div>
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The truth is, there are some things that my silly little woman's brain just can not understand. For example: the sprinkler. I'm not sure if its a mechanical issue (seriously, how many options and buttons can there be on one sprinkler?!) or if its my pitiful spacial reasoning skills. You know that career inventory that you are given in 8th grade that helps give insight into what your future holds? I failed the spacial planning section if that helps you in the visual I'm about to provide.</div>
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I had already thoroughly sprayed the house, front door, cars, and several passing cars when I finally figured out how to get the sprinkler to work in the front yard. So Jensen and I took a lovely walk around the neighborhood while it watered the front. When we come back I had Jensen in the stroller on the patio and I was talking to my mom on the phone. I moved the sprinkler to the backyard and was admiring my handy work (hmmm, not too shabby). As I am about to move it again, I walk right into the jet stream of water...soaking my hair, face, jacket. I am laughing so hard I scare Jensen and he starts crying. Trying to get to him quickly, I just shove the sprinkler in the ground and put him in the house but leave the backdoor open. As I'm sitting him down on the floor, I hear the sprinkler coming around the side of the house. Jensen has decided to to to crawl at light speed and is blocking the door with his body so I can't close it before water shoots him and directly into my house! It was like a car wreck that is happening in slow motion...I just could stop it! I almost peed my pants I was laughing so hard!! I don't know what I said to my mom but I hung up with her to tend to a screaming Jensen and my soaking wet house.</div>
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On the bright side: I got to do an impromptu mopping of the kitchen and dining room floors (super fun), I got to put on a fabulously funny show for my neighbors and laugh hysterically at myself (and then laugh all over again as I write this!). </div>
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The moral of the story is this...my brain must really be smaller. Ron Burgundy was right, its science. </div>
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Hope you all have a wonderful night =)</div>
Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com1tag:blogger.com,1999:blog-2425182370764292559.post-82155779015168935082013-05-06T14:29:00.000-04:002013-05-06T14:29:36.453-04:00Bring on the summer fun!<div class="separator" style="clear: both; text-align: center;">
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They always say no news is good news. That's true for us, we've been living a totally normal life and haven't even thought about updating! Jensen is doing awesome and we are now only going to the cardiologist every 3 months! I remember a time when we were driving from Raeford to UNC or Cary multiple times a week, every single week. He's come so far =)</div>
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<tr><td class="tr-caption" style="text-align: center;">This boy seriously loves being outside!</td></tr>
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Jensen is now 14 months old, 23ish pounds, and on the verge of walking. When Jensen does anything he does it with style and that's exactly what has happened with his developmental achievements lately. He went from barely crawling...to pulling up to his knees...to pulling up to standing...then taking steps while holding on to the couch... all in about 2 weeks! His physical therapist is amazed but not so surprised. She knows our boy well!</div>
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He is incredibly strong and has so much determination. Jensen works so hard and it makes me proud to be his mom. There are some days I wish I could just do it all for him. Carry him so he doesn't have to try to walk. Hand him his toys so he doesn't have to struggle. I know he needs to be challenged and he will only grow stronger from all of this hard work, but that doesn't make it any easier to watch. On the days I almost forget about his heart, I am quickly reminded when we walk one lap around his bedroom and he's out of breath and sweaty. Or when he is trying to coordinate his steps in physical therapy and there are sweaty footprints on the mat bc he is trying so hard. </div>
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This boy absolutely melts my heart. He is a mama's boy through and through. His only response when we try to get him to say words is "maa mama". I love this kid so darn much! He now gives super tight hugs and puppy kisses, it cracks us up every time! </div>
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<tr><td class="tr-caption" style="text-align: center;">Such a dare devil! </td></tr>
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Jensen is such a night owl! He would much rather stay up late with mommy and daddy than go to bed early. Even if we do get him to sleep at his early bedtime, he will wake up around midnight...laughing and ready to play! Of course we can't resist his sweet little laugh so we get up with him and play! (He may be a tad spoiled!)</div>
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<tr><td class="tr-caption" style="text-align: center;">Jensen and his cousin Payton</td></tr>
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<span style="text-align: -webkit-auto;"> Jensen went on his first zoo trip and LOVED looking at the animals, and all of the little kids there! He loves to play outside in the pool or at his water table. Jensen is all about some wagon rides around the neighborhood, we go for a ride at least once every day.</span></div>
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<span style="text-align: -webkit-auto;">Jeremy will be busy with work this summer so Jensen and I have a lot of fun stuff planned. We are going to the beach, then to Philly, plus trips to see the grandparents, and probably some day trips around the area. He is going to be one well-traveled little boy!</span></div>
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<tr><td class="tr-caption" style="text-align: center;">His new big boy haircut!<br /></td></tr>
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Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-91689394497149552302013-03-14T09:13:00.001-04:002013-03-14T09:13:17.469-04:00Catching up<div style="text-align: center;">
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<span style="text-align: -webkit-auto;">I have been seriously slacking on my blogging duties lately! Since my last post we have been settling into our new home in Angier (for those of you who don't know apparently its pronounced AN-jr). We absolutely love living here. The pic above is us on closing day! We had zero furniture but we stayed at the house and camped out on the floor together. We are super close to Raleigh & Cary but we are still surrounded by farmland. Our neighbors have been fantastic and I've met a great group of heart moms from all over the Triangle. Life is pretty good these days!</span></div>
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Jensen had a great first birthday party! He wasn't too keen on the cake smash, mostly because he was scared having so many people around him (he's used to having a nice quiet house with mommy and daddy). He did manage to cover me with plenty of cake and we both had to do a mid-party wardrobe change. The birthday boy was absolutely pooped and didn't even stay awake long enough to sing happy birthday, he took a very long nap that day! </div>
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Jensen has been continuing to work on his leg strength in physical therapy. He has been standing for 6 minutes at a time, but only if he watches something fascinating like Baby Mozart! He struggles with bearing weight for that long and by the end of 6 minutes his legs are trembling, but he's such a trooper! He army crawls everywhere and is now starting to get on his hands and knees! He also has been pulling up on anything he can find, because he realized there so much more to see when you are on your knees :)</div>
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As you can see, he has no trouble getting around. He gets into everything! He is especially good at ripping up paper and helping me unpack boxes. His name "Capt Destructo" has more meaning now! Needless to say, our new house is on its way to being baby-proofed. He's already tried to explore electricity by shoving things into outlets. </div>
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This kiddo loves being outside. On a day when he's especially grumpy and teething, some vitamin D will cheer him up super quick! He loves to ride around in his wagon or his stroller. We blow bubbles and chase each other...he is such a boy!</div>
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Playing outside is fun but exhausting...</div>
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Since we are getting settled here, we have found a new pediatrician for Jensen. All of his other specialists will stay the same but his primary care doc is changing. It is so hard to find a practice that will 1) accept our insurance 2) meet the criteria that our cardio outlined as far as having enough MDs available to see him 3) be willing to treat such a complex kid. So after much searching and many many phone calls, I finally found a new practice and we will be going to see them next week. Now, for the hardest part...gathering his medical records. I have to get them as much info as possible without giving them unnecessary stuff. Jensen's records are literally thousands of pages, there's no way they will look through all of that so I'm going to do it for them! Its going to be a blast (said with extreme sarcasm). </div>
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Jensen did have a cardiology appointment yesterday and it went so well I was in disbelief! My blue baby that always has low oxygen sats was sitting pretty and pink(ish) at 82 yesterday =) Dr. Robinson didn't even need a full echo because that number speaks volumes about how well his pulmonary arteries are doing. Jensen had a quick echo to check his heart function, which was great, and we were done! Dr. Robinson took him off of Lasix (the last oral med he is on) and we don't go back for 3 months! Its amazing how far this little guy has come. I'm so grateful for appointments like that =) </div>
Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com1tag:blogger.com,1999:blog-2425182370764292559.post-88727395696423812402013-02-22T08:30:00.000-05:002013-02-22T08:34:28.848-05:00First Birthday!!I can't believe today is Jensen's first birthday! Instead of a lengthy post describing how much I love my kid and how amazing he is, I've decided to write him a letter to share with you all. From the bottom of our hearts, Jeremy and I are so thankful for every one of you. This year has shown us the power of friends and family, their prayers and support. We couldn't have done it without you. Now, I'm going to go cry about my baby turning one while you all read and share this post!<br />
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<span style="letter-spacing: 0.0px;">My sweetest tootie butt,</span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Yes, we call you tootie butt, stinky toes, monkey, and a million other embarrassing names I will share with your first girlfriend. I’m looking at you with your sweet little feet sprawled out and your mouth wide open as you sleep. You are probably dreaming of patty cake and playing with Daddy...some of your favorite things. You started army crawling about a month ago and I swear you only get faster every day! You drink milk from a sippy cup like a mad man. You are a little crazy about how much you love yogurt. You started fake laughing and it makes your daddy and I crack up! Your laugh is so contagious. Today you turn one. </span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>This time last year I had no idea how much you would teach us. I never knew so much love until I touched that little foot before you were whisked away. I was terrified for you and in awe of you at the same time. You looked exactly like your daddy when you were born and came out with a rockin’ mow hawk. We should have known then how much hell you would raise! As terrified as we were about your heart and all you would go through, you still amazed us. You taught us that half of a heart means nothing. You have more heart and more love than anyone I’ve ever known. </span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Jensen Aaron, we named you after a fighter. You have lived up to that name and he would be so proud of you. You fought to live harder than any person should, especially at only a few days old. Your dad and I would have taken your place instantly. I hated to see you struggle, I hated to see you in pain. Despite it all, you showed us your determined little personality and made one incredible recovery.</span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>This year has been rocky and this year has been tough. This year has also been the best of my life. You make us smile. You light up the room. Your snuggles are the best. You give sweet, slobbery kisses. I just can not get enough of you. I will always cherish our time together because I thought I would lose you. I didn’t think I would get to celebrate your first birthday. So today, we are celebrating not just one year of surviving, but one year of living your life to the absolute fullest. </span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Nothing holds you back and you do exactly what you want to. I hope this holds true for your future. I hope you continue to do things your way, which is always a little different than expected. I hope you always have that fighter’s spirit. I hope you love someone as much as I love you.</span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Today I want to wish you a very happy birthday. You have made me the luckiest mom in the world. I can’t wait to party hard with our family and friends and celebrate the bravest boy we know! </span></div>
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<span style="letter-spacing: 0.0px;">Happy Birthday, my love. </span></div>
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<span style="letter-spacing: 0.0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>-Mommy</span></div>
Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-38701775492322913912013-01-31T18:35:00.000-05:002013-01-31T18:35:27.115-05:00Heart Month is here!<br />
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Tomorrow kick starts Heart Month and it is also the day to GO RED! We are asking people to wear red to support awareness for congenital heart defects. 1 in 100 babies are diagnosed with a heart defect, making it the most common birth defect. Although this is so common, many people still do not know about CHDs. The goal of the heart community is to educate and empower people to make a difference so that one day these kids won't be known as the "1 in 100".</div>
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One of the ways to make a difference is by implementing a newborn screen. This test is done in the hospital at the time of the other newborn testing and quick, easy, and painless. It involves wrapping a pulse ox probe around the baby's hand and foot. This measures the amount of oxygenated hemoglobin in the blood. For some perspective, Jensen's saturations run around 80 where mine run about 98-100. For more info about the test <a href="http://www.cdc.gov/ncbddd/pediatricgenetics/pulse.html">click here</a>. Many states, including North Carolina, still do not have newborn screening in place to detect heart defects. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzbSNGrH2mg4_cPAH-LiSrjyLcKyI5OuMG9RzAXo-C9BQqZsWCBsUaLj3nkUOeig-AtkpKgPXUaPf73uWtGbUIZu0L9PMrXZpjjGezAP6fX31Ccp114btPHfTEOwdhcCYu5qZp7E_X8jkO/s1600/newborn+screen+map.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="188" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzbSNGrH2mg4_cPAH-LiSrjyLcKyI5OuMG9RzAXo-C9BQqZsWCBsUaLj3nkUOeig-AtkpKgPXUaPf73uWtGbUIZu0L9PMrXZpjjGezAP6fX31Ccp114btPHfTEOwdhcCYu5qZp7E_X8jkO/s320/newborn+screen+map.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">All of this talk about detection always brings me back to when Jensen was first born. We considered ourselves blessed to know his diagnosis before he was born. He looked so healthy and even scored a 9/9 on his APGAR. I don't even like to think about what could have happened if we had taken him home, not knowing about his broken heart. </span></td></tr>
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This was our "healthy" little man before he went into surgery.</div>
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Kissing my boy goodbye as he was wheeled to surgery was so surreal. Its hard to even put into words how painful and how lost you feel knowing what your baby will face. </div>
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Jensen overcame so many obstacles through that surgery and recovery. Jeremy and I never expected things to go<i> so</i> wrong. One surgery turned into two....two turned into three...the sound of the code bell as his heart rate hit zero... I vividly remember running down the hallway behind Jensen and this team as they were taking him back to the OR to put him on ECMO. I also remember having to sign consent forms while we were running. I have never felt so hollow or confused in my life. I was consenting to something but I had no idea what. Permission for them to save my baby again? </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDaPCsXiR1ZnV-DumjyUH0d5ZE21XVKpn6Krlxjkwj3Zxk6blF7VeZj53Vx97JTfPtugjh4sDIs9QEJuMEOqRv7mLBcCVa9OmugKsD-nPc95tz2Rtbuap-eWf2fHqECkgS0Z6-Iql9Pxj9/s1600/DSCN1317.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDaPCsXiR1ZnV-DumjyUH0d5ZE21XVKpn6Krlxjkwj3Zxk6blF7VeZj53Vx97JTfPtugjh4sDIs9QEJuMEOqRv7mLBcCVa9OmugKsD-nPc95tz2Rtbuap-eWf2fHqECkgS0Z6-Iql9Pxj9/s320/DSCN1317.JPG" width="320" /></a></div>
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Then two weeks of sleepless nights, hours by Jensen's bed, endless questions to the medical staff, and so much heartache later...came this. I got to hold him again. This journey has been insane and amazing at the same time. We went from being devastated about the massive complications he suffered to rejoicing in every single movement he made. The day I held him in my arms was unforgettable. Dr. Fuller came by to visit him of course and we both cried tears of joy =) </div>
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My goal for this month is to spread HOPE. While there can be so much sadness in the reality we face, we want to assure everyone that there is much more happiness! We are so blessed to be parents to this awesome little dude and I'm reminded of that every single day. His smile lights up the room and he has the most hilarious personality. All of that from a sick kid with a heart defect? Yes. He's amazing. He's my hope. He's the reason that I want other parents to know that things are going to be ok. Being a heart parent is challenging beyond belief, but the reward is so, so very sweet <3</div>
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There is hope, and his name is Jensen Aaron. </div>
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Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-70322487329979432912013-01-11T00:22:00.000-05:002013-01-11T00:22:26.193-05:00New year madness<div class="separator" style="clear: both; text-align: center;">
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Life since Christmas has been busy (but seriously, when are we not busy?)! Jensen had a very quiet, wonderful holiday and we wouldn't have had it any other way. He was precious opening presents and we have a lovely video of him choking on wrapping paper! Jensen had so many toys we didn't even open them all! We are going to rotate through them slowly so he always has new toys to play with ;) </div>
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We also got our pictures back from our first family photoshoot and I am so in love with them! <a href="http://carlialisabethphoto.wordpress.com/">Carli Alisabeth Photography</a> did a fabulous job! I also ordered a ton of pictures, including a gallery-wrapped canvas from <a href="http://mpix.com/">mpix.com</a> and I loved them! I definitely recommend using them for high-quality prints, they have great prices! I will be mailing out pictures to family and one very special surgeon as soon as I get a chance.</div>
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In other news on the Willis family: we are moving! We are so totally excited about this move and can't wait to get into a new house. Jeremy and I had a house lined up and we were set to close in a couple of weeks, but that one fell through after many problems with the house. But that's ok, it wasn't meant to be so we are moving on to bigger and better houses. We have several more that we are looking at this weekend and I love them all! </div>
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We are going to relocate to Raleigh area, which is going to make our life so much easier! This will be much closer to Jensen's specialists, although we do have to find a new pediatrician. We will also be much closer to hospitals that can handle a patient like Jensen should there ever be an emergency. Not only will this be better for Jensen but I have applied to a program at UNC and will be doing my clinical rotations in Raleigh and Durham (if I am accepted). If I'm not accepted to the program, I will be getting a job in Research Triangle Park! Have I mentioned how awesome this move is going to be for us?? ;) We are VERY excited! </div>
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As you can imagine, preparing our current house to sell and looking for a new house have kept us busy. When I'm not chasing after Jensen or taking him to the doctor, I'm cleaning, packing and organizing. Our house is almost empty and we are listing it to sell next week! It is definitely bittersweet leaving the only home Jensen has ever known. </div>
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Jensen has been doing awesome! He isn't quite crawling, but that definitely does not slow him down! He is a mad man scooting on his butt anywhere and everywhere he pleases! Although we do not have much stuff in our house, amazingly he still finds things to get into to. He has been dubbed 'Captain Destructo' and has lived up to that name well! I joked that I don't think we could keep up with him if he had a whole heart! hah! This kid is spunky. </div>
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Jensen had cardiology and hematology this week. His echo looked great and we won't go back for 2 months! I'm not sure what they will do without seeing little man for that long. He's very popular in the cardio office! Hematology went well too. Since he's only on one Lovenox injection daily, that means less blood that has to be drawn! He is still a very hard stick, but this last one went great. We had a PICU nurse come down to draw his labs and she listened to exactly what I told her and got it in one, quick stick. My boy was so brave and only cried for a minute <3</div>
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The next few weeks are going to be just as busy for us. Jeremy has a lot going on at work, we will hopefully have potential buyers looking at the house, and then we will be closing on our new home! And most importantly, Jensen's first birthday is next month! I will be doing a separate post for that but let me just say, I cry every time I think about my sweet baby turning one. I remember when I was hoping he would live another 24 hours. I could never have imagined how much joy this last year would bring =)</div>
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<br />Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com1tag:blogger.com,1999:blog-2425182370764292559.post-72131190365392583432012-12-21T22:31:00.001-05:002012-12-21T22:31:54.416-05:00Home for Christmas<div class="separator" style="clear: both; text-align: center;">
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Our trip went so well and we are home in time for Jensen's first Christmas =) We could not be happier with how smoothly everything went and how nicely Jensen recovered! I had so many cute pictures of our trip, I'm including a bunch!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjScEANAhMog8cNA-4XqNSL_8E72E2nnpOFIy4OHLpwOm1iMydSOWcutii41gERiqLSkMth9MWaINDF8C4mfHlraFmgS_-gcLDqK1g4sKtYVQEV6jh9fCemgOxZWvIqxFRKmKAgIFqc6vb1/s1600/IMG_2288.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjScEANAhMog8cNA-4XqNSL_8E72E2nnpOFIy4OHLpwOm1iMydSOWcutii41gERiqLSkMth9MWaINDF8C4mfHlraFmgS_-gcLDqK1g4sKtYVQEV6jh9fCemgOxZWvIqxFRKmKAgIFqc6vb1/s320/IMG_2288.JPG" width="240" /></a></div>
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Jensen is such a great traveler! He did awesome on the trip up, he played the whole time! My parents met us at the airport and we went back to their hotel for a bit then we went to our favorite restaurant, The White Dog Cafe, for brunch! I would take a trip to Philly just to have a mimosa and chocolate chip waffles from White Dog...yum!</div>
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He was being such a ham =) He has so much personality and laughs ALL THE TIME! It doesn't matter what Jeremy does or says, Jensen thinks he's hilarious! We get a kick out of hearing that precious laugh, it never gets old. </div>
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Jensen was totally wiped out both days of testing, but still managed to look adorable. </div>
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Don't let this sweet face fool you, this was right before his echo that he screamed through! He has always done pretty well with echoes but he was just too tired for this one! Its a wonder they got any images at all.</div>
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The staff at our hotel are amazing. We have stayed at the same hotel for every trip and they make sure we have everything we need. They treat us so well and always ask about how Jensen is doing. We are so lucky to have found them! We had them take a quick family pic the morning of the cath. </div>
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Jensen and daddy waiting to go back for his cath. We waited around for about 3 hours and man it was tough keeping the boy happy for that long!</div>
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He had his trusty Blue Puppy to keep him company and thank goodness for the little TVs over the beds! He watched a LOT of cartoons to help pass the time. </div>
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This little stinker also passed the time by flirting and waving at all the nurses. I think they put him in the room by the front desk for a reason ;) He is such a ladies' man!</div>
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Post-cath! He had to lay flat for 6 hours which was hard, but he did sleep for some of it. He was so happy to be able to sit up and be held! Also, he was totally fluid overloaded so his face looks super puffy in these pictures! He was a very thirsty boy when he woke up plus he had IV fluids!</div>
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The cath went very well and although he did need interventions, the narrowing he had was more mild than they previous thought. Dr. Rome went ahead and opened up all three areas just to optimize flow through the stents and arch but he really didn't need that much work done. Now that he's had his "tune up" Dr. Rychik is hoping that we won't have to go back for a full year! As always, Jensen will determine when its time to go back by how he grows and what his sats look like. </div>
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Of course, we had our favorite person in the world stop by to visit! Dr. Fuller was amazed at how big our "little" man is! Although he fussed for a minute, he actually let her hold him! Anyone who knows Jensen knows what an amazing feat this is!</div>
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I'm so glad that Dr. Fuller got to see some of the cute things Jensen does =) I've been telling her how amazing he is doing so it is awesome to see them together! He really does love her...and so do we! </div>
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I can't believe how short this trip was! Even though the trip home was full of flight delays, running through the airport, and a long drive home, we are so thankful to all be together at our own house. We were so worried about this cath and are amazed at how well Jensen came through. We are so looking forward to having our first Christmas together =) Thank you all for your prayers and messages, it really does make all the difference. I will ask for one more prayer request: please remember my heart family. There are families that do not get to be home for the holidays because they have kids in the hospital waiting for transplants, recovering from surgeries, or fighting off illnesses. Also there are too many heart moms and dads we know that will spend Christmas missing their warriors. I hope they are able to find peace through the holidays, even though they are missing their sweet angels.</div>
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I hope you all have wonderful, healthy holidays! Merry Christmas <3</div>
Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com2tag:blogger.com,1999:blog-2425182370764292559.post-64623069123066694362012-12-20T10:06:00.001-05:002012-12-20T10:06:19.551-05:00Discharged!We busted out! We are on the way to the hotel after very little sleep last night. Jensen is doing great and is back to his normal happy self! Dr. Fuller came to visit him this morning and he gave her plenty of snuggles :) I will post more later along with pictures. We are flying out tomorrow morning and should be back home by early afternoon. Thank you for all the prayers and kind words! This has been our shortest trip to CHOP yet :) Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0tag:blogger.com,1999:blog-2425182370764292559.post-85035247251469871462012-12-19T17:46:00.001-05:002012-12-19T17:46:18.938-05:00Doing great :)Everything is going well and he is sleeping. Everyone is happy with his post-intervention measurements and we should be discharged tomorrow morning! Thank you for your prayers! Amelia Willishttp://www.blogger.com/profile/11427672057067523292noreply@blogger.com0