tag:blogger.com,1999:blog-363357829512943492024-02-18T17:36:33.986-08:00A Faith Like JobTrusting God through difficult blessings!
Arthrogryposis and beyond.Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-36335782951294349.post-39103639175248821812014-04-07T12:08:00.001-07:002014-04-07T12:08:16.636-07:00Where has the time gone?<div class="separator" style="clear: both; text-align: center;">
There is sooo much to catch up on! Time has passed so quickly!</div>
Ok, Edward. Not much has happened. We lost insurance for him last May and because of that, stopped doing therapies. (I was kinda burnt out anyway) Insurance was and is a big stress. Oh, Edward's G-tube came out and we couldn't get it back in so we had to go to the ER to get it back in. It was very traumatic and painful for Edward because his hole closed up so quickly. The doctors and nurses tried expanding the hole by trying to push the tube in. It was an eight hour painful experience for my poor little boy. Edward has really improved his vocal ability. It is sooo....cute/loud/annoying because all I hear all day long is 'mommy' 'mom' 'mommy' 'mom' NONstop all day. He is such a crack-up though. this is the year of, Lord willing, getting him to walk. after having a baby and essentially having another baby, it is really hard to go places and carry two kids, one who doesn't move well. like carrying a heavy awkward board. my back is shot that is for sure. so our first pt appointment was last week. it was good...i knew it would make me sad. it always does. he has lost range of motion in his neck and hips and well everywhere. mainly because that is the nature of his beast. i am determined not to have a wheelchair. everybody keeps mentioning a wheelchair. i can't accept that for him. it is a mental hurdle i have not crossed yet. even though many therapists have suggested it. so i am determined to make him walk.<br />
Ok So we had an appointment with Edward's spine and pulmonary doctors this last week...did not go so well. turns out his spine is at 60 degrees in traction and his pulmonary doc was/is concerned for his lungs and that he is using one side more dominantly. we had a lung scan last week and from quick glance the radiologist said that it looked normal. so that was good. but they have mentioned doing surgery on his spine in september. and then lengthening the rods every 4-6 moths for growth so we have been tasked with fattening him up. which will be very difficult. his weight has plateaued at about 16 pounds. they also want to clip his abductor muscles in his legs for hygiene and do thumb and ring finger surgery all in the coming year. poooor thing. the past year was doctor free bliss. but i knew it was just a calm before the storm. edward is turning three next week! cant freaking believe it! he is the funniest sweetest boy ever. i adore his personality. such a sweet soul.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_LciVNPbeQIpP9KLcmrawCjQqm_cP-gKUPiZC0SNP4_k7X-xYWO5EE1b38o199RtlalEZcyDmrGSkT2kQWz7vkA4t2RqQ_LMcV2m4_iRZmF3Aq_y-wSUiQ4FxNs5iMptd12KiKPBNtLc/s1600/IMG_0881.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_LciVNPbeQIpP9KLcmrawCjQqm_cP-gKUPiZC0SNP4_k7X-xYWO5EE1b38o199RtlalEZcyDmrGSkT2kQWz7vkA4t2RqQ_LMcV2m4_iRZmF3Aq_y-wSUiQ4FxNs5iMptd12KiKPBNtLc/s1600/IMG_0881.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">fell asleep during a timeout in his room</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXnC2JV0aW0HvcRXgm_DT9IqxZsjmQ4cbDUYIGpNPXD9-bWqAkXyIN3KKgWFBHnvJzTDs1LDW2nT4_2VxE0YMQGuGGOV6kZzFXWfRKcea4HfVSs2i742X-Yl7TubYO2jjhoMp0AXJxBlg/s1600/IMG_8581.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXnC2JV0aW0HvcRXgm_DT9IqxZsjmQ4cbDUYIGpNPXD9-bWqAkXyIN3KKgWFBHnvJzTDs1LDW2nT4_2VxE0YMQGuGGOV6kZzFXWfRKcea4HfVSs2i742X-Yl7TubYO2jjhoMp0AXJxBlg/s1600/IMG_8581.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">lake love</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-gD13vzjBAM-xbaQ9xcgQvwV57uw_hFBXOJ_lomnBPL-WPWtCsryE97fnKOc4g5LNPEV0t7xTqkY-lWLYBi8oqv7GURVg1DHn0mShAmYuADnhrtdfhyzOfWvPYlBEIZVV7mzKDqJ0gsI/s1600/IMG_8674.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-gD13vzjBAM-xbaQ9xcgQvwV57uw_hFBXOJ_lomnBPL-WPWtCsryE97fnKOc4g5LNPEV0t7xTqkY-lWLYBi8oqv7GURVg1DHn0mShAmYuADnhrtdfhyzOfWvPYlBEIZVV7mzKDqJ0gsI/s1600/IMG_8674.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">always happy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_yKT-qVuIaVULYDrQ01rmz705fq8NzMLpF6mZi79-LsoGuSUypvnksBhmn6xVp9mrulgCLMghiG5TH22alWS3hDTeZU8YITRP1qn8qIzm6wpUYYr_2hsxdeficCxK0Kc4PMnlLLtmTGc/s1600/IMG_8678.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_yKT-qVuIaVULYDrQ01rmz705fq8NzMLpF6mZi79-LsoGuSUypvnksBhmn6xVp9mrulgCLMghiG5TH22alWS3hDTeZU8YITRP1qn8qIzm6wpUYYr_2hsxdeficCxK0Kc4PMnlLLtmTGc/s1600/IMG_8678.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">chuckecheese fun</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF89RmGN8AnselA4DlQUs-HQRam2R20AM5GA2sJz27gDQjIkYRGWiALl795G6IURloiRc0-Pem2aZ-7cqOb2NGv6bJ-CRLhANft-vSrex334hNvh5yJ2WcVw2715HNslBkeoYcFKEu0w0/s1600/IMG_8722.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF89RmGN8AnselA4DlQUs-HQRam2R20AM5GA2sJz27gDQjIkYRGWiALl795G6IURloiRc0-Pem2aZ-7cqOb2NGv6bJ-CRLhANft-vSrex334hNvh5yJ2WcVw2715HNslBkeoYcFKEu0w0/s1600/IMG_8722.jpg" height="320" width="213" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP9nGislafgobJtdjBWmt1uFdb80nmjjL4vVkFcBDsyj3kJDHGJhPXxaDGx5ODSNt3DwxZ-8-FjC1qrci3bDUqGJh3azfAxTvYUNK_Ww7sgVV1cyl_uAbI-7XBPXvVLWED6mWH__yrChY/s1600/IMG_8775.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP9nGislafgobJtdjBWmt1uFdb80nmjjL4vVkFcBDsyj3kJDHGJhPXxaDGx5ODSNt3DwxZ-8-FjC1qrci3bDUqGJh3azfAxTvYUNK_Ww7sgVV1cyl_uAbI-7XBPXvVLWED6mWH__yrChY/s1600/IMG_8775.jpg" height="320" width="213" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSu-ph8WPXkgRj3SRWo7C0afL-WyollsGvpqLIKHWEn0fIouZTAHKoM0xH0BZVnvow3VXDC_Atkp1jmLq0WKRJkCZeIBhSNaLa4Fh6TkRWOksU7YGQ_YnoSFGxouGiQRJJwhMIc4pklCo/s1600/IMG_8754.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSu-ph8WPXkgRj3SRWo7C0afL-WyollsGvpqLIKHWEn0fIouZTAHKoM0xH0BZVnvow3VXDC_Atkp1jmLq0WKRJkCZeIBhSNaLa4Fh6TkRWOksU7YGQ_YnoSFGxouGiQRJJwhMIc4pklCo/s1600/IMG_8754.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my little redskin</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVLx7h_gWDutr6kdsauq93BOlsz3I4GnRq2tbTtilBBhWGXLDqEyUdeUacMaxgk4yDSIxZdig9I97XvP2zvjR7xEH5KC-VTBmaHHe3Q73LaKw74KqyLeZ9aoTJnRvjqDWVXeFdeSIA0tI/s1600/IMG_9113.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVLx7h_gWDutr6kdsauq93BOlsz3I4GnRq2tbTtilBBhWGXLDqEyUdeUacMaxgk4yDSIxZdig9I97XvP2zvjR7xEH5KC-VTBmaHHe3Q73LaKw74KqyLeZ9aoTJnRvjqDWVXeFdeSIA0tI/s1600/IMG_9113.jpg" height="320" width="245" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ46fy7kY_4tEZgNugj-XALh7Y4iYZTq-O519gcp_gBXecdpPq8MqGqrkKB1aJWqn6VryuiFZ9qlHW3u9eG2jHgcdqhIjF_qJF8r7yVyu6Hv7SLFEIwC-nOrAQieHF6-VUiBhBSag87g4/s1600/IMG_9042.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ46fy7kY_4tEZgNugj-XALh7Y4iYZTq-O519gcp_gBXecdpPq8MqGqrkKB1aJWqn6VryuiFZ9qlHW3u9eG2jHgcdqhIjF_qJF8r7yVyu6Hv7SLFEIwC-nOrAQieHF6-VUiBhBSag87g4/s1600/IMG_9042.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">loves his sis</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiokq5zKGiCTsPskZF7qiUMar85a_FtGsdQoong9Jc5BM29PgtRb-3bFFbDLyEowCQUVHtbwgMriAK0IfL5IjJ2zfvGZdryIFD7O1IQfiKRQuGfo51glppYPUEq8kkUdZA52tsGkTYXPMo/s1600/IMG_9195.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiokq5zKGiCTsPskZF7qiUMar85a_FtGsdQoong9Jc5BM29PgtRb-3bFFbDLyEowCQUVHtbwgMriAK0IfL5IjJ2zfvGZdryIFD7O1IQfiKRQuGfo51glppYPUEq8kkUdZA52tsGkTYXPMo/s1600/IMG_9195.JPG" height="187" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">christmas baby</td></tr>
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<a href="https://vimeo.com/91336068">https://vimeo.com/91336068</a></div>
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i have posted more videos on vimeo...<br /><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;">Ok, so the last time I posted was when we moved from our first house and I was terribly sickly pregnant, to a house that was uber dark and in a bad neighborhood. A couple days after we had been in the new house our neighbors had a domestic dispute, to put it lightly, and yeah. it made us super uncomfortable and unsettled which we translated into 'get us outa here back to spokane.' So our summer was spent looking for jobs and opportunities in spokane. we found some and pursued them. We even pursued a job in Walla Walla! They flew our family down and Adam interviewed and Thank Jesus he was not offered the job. It would have been very difficult to acclimate to life there. We made multiple trips to Spokane and even looked for houses! I feel madly in-love with my dream house of Spokane. In the middle of the trips (any excuse to get out of our house), we took a vacation to lake Pend Oreille rented a cabin for our family and played in the water! It was soooo wonderful! A dream vacation. After the first day we agreed we needed to book it the second we were able to for next year.</td></tr>
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On July 11, my sister flew over to Spokane to be with me as we had our 20 week ultrasound. I was very emotional! As they were checking the anatomy..I just lost it. It was perfect which made me sooo sad for Edward. Why was this one so perfect and Edward not?..Meaning joints and general anatomy. Then they told me i was having a GIRL!! I was soo overjoyed!!! I couldn't believe God was giving me a girl! We all laughed and cried because H made a funny when they told us a girl. After the appointment, we went shopping and bought her first girl clothes. The rest of my pregnancy was, for the most part, easy. I was uncomfortable and suffered through bad heart burn. Eating was annoying because I always felt sick afterwards, but I love being pregnant so it was all ok. Oh, at about 29-30 weeks i had kidney stones! HORRIBLE...that pain was like no other. So that was a fun little trip to the er. I ended up having baby Christmas night after a long hard labor. I love my baby girl! :)<br />
Our last trip to spokane we interviewed and it went really well..adam had it. But I had a really weird feeling about it. For some reason I felt as if it was not where God wanted us. So adam turned it down and we decided to move to yet another house that was in a better neighborhood. my mom and dad came over and helped us move and paint baby's nursery. I did a lot of sewing for her and a lot of shopping. I obsessed over her nursery, which, i am madly in-love with! I got into knitting!<br />
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there is tons more but for now i will be done. I will update more regularly..promise :)<br />
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Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-52689436117829682112013-06-24T09:41:00.000-07:002013-06-24T09:43:07.306-07:00moving<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwDEaCCN1XNuPtrSaRH_XfDEelpKWpPwlR8iOVjXDwICxih_E-myNzcVnvTVZybIsCSR0f2RxWGVhTS1i1T' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
(Edward rolling like crazy in an empty house.)<br />
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Praise Jesus May is over!! You guys have no idea..well you are about to.<br />
First, we received a 20 day notice to vacate our house. It came as a TOTAL shock. Our "lease" wasn't up for another month. However, they worded the lease to benefit them and bind us. We were furious. And this was right after I Finally hung pictures on the wall! I have told Adam that I will never hang another picture on a wall unless I own the wall.<br />
Then my whole family got sick. The boys, thankfully, got over it after a week or so. Harvey was a trooper. When Edward gets sick, he always vomits at night and loses a bunch of weight. So that happened. I was horrible sick for three weeks with a sinus and lung infection. I got so sick because I am pregnant!! The start of May was the start of some horrible morning sickness! Ugh. Still going. I have thrown up multiple times. Those three weeks when I was double sick were the absolute worse ever. My poor family. I could barely take care of the boys when Adam worked. Adam would come home on his lunch break and feed the boys and put them to nap. Adam did everything! He packed the whole house up, took complete care of me and the boys. During this time he got sick as well. It was misery for us. The boys didn't leave the house, I literally didn't leave the couch. All the while trying to move. It was hard enough just being pregnant sick and sick sick then add on the stress of moving. It was a horrible nightmare that is thankfully over now.<br />
Everything works out for the best. We were super sad to leave our neighborhood. Our neighbors were wonderful and Harvey had lots of playmates. So sad. Now we live in the ghetto which, oddly, is up the hill, not even half a mile away from our old house. But, we are in a month to month and I see another move coming soon.<br />
But yay! I am with baby number Three! We are due in December! I definetly want a girl, of course. :) I am prepping myself for another boy. I really have no expectations for this pregnancy, though. It has already been COMPLETLY different from the previous two. More sick, constant nasty taste in my mouth, constant saliva production, already sleeping uncomfortable, throwing up acid, already had some contractions, not hungry, got dehydrated (due to sickness), lost weight, and nothing sounds good. In theory those might be good odds for a girl but i am definetly not counting on it! My ninth week was emotional. During one of my many doc appointments with Edward, I remember one doc telling me that Edwards joints started forming out of place at week nine. For some reason, that really hit me because I couldn't believe it happened that early. So the day before I turned nine weeks I literally cried the whole day in bed. I have had two ultrasounds already and my last one was nice because we saw legs kick, which we never saw with Edward. Harvey was so excited to see the baby. It was adorable. I am optimistic about the health of this babe. Whatever the Lord gives me I will take! I certainly don't think I 'deserve' a healthy child or am 'due' one. I know that I am not in control.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQY5onIVixjYOq9IjRlCZBTC7txGDakHmrU37c3yLt_EYXD34udgfqxkraErCgnx3gvVYNoQW31OxfPdxdZlCzXZ90l9WO__DZel2ccJHZPUBhK5a2bD0-1ha-uR8lDoNBc7PHX9uaLeU/s1600/IMG_0065.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQY5onIVixjYOq9IjRlCZBTC7txGDakHmrU37c3yLt_EYXD34udgfqxkraErCgnx3gvVYNoQW31OxfPdxdZlCzXZ90l9WO__DZel2ccJHZPUBhK5a2bD0-1ha-uR8lDoNBc7PHX9uaLeU/s320/IMG_0065.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my sweets!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">boys and i sharing a delish dessert</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuvnWTq68bfW7EFibmywbcqkcjXxdkZv4dsdI7sGR_CvY0NBFXcLw6cxiwyI1dcFU18P2KUu3XtvFw7Ea-vUOoLi7unSn2CsD-Qz7qjrByHfbJ-U9PYVNqOpgYLc-oD7bsvp8IDMnqGsU/s1600/IMG_0791.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuvnWTq68bfW7EFibmywbcqkcjXxdkZv4dsdI7sGR_CvY0NBFXcLw6cxiwyI1dcFU18P2KUu3XtvFw7Ea-vUOoLi7unSn2CsD-Qz7qjrByHfbJ-U9PYVNqOpgYLc-oD7bsvp8IDMnqGsU/s320/IMG_0791.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Edward is eating real food now!</td></tr>
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<br />Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com3tag:blogger.com,1999:blog-36335782951294349.post-22051947953991837312013-04-15T20:43:00.001-07:002013-04-15T20:43:38.046-07:00HAPPY BIRTHDAY EDWARD!!Happy Birthday Edward!! I can't believe you are two years old! You are a major pill-butt but I Love that about you. I adore you!<span id="goog_1483330214"></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Cheese-ing it up!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqyn0jrHkeMG_ChkX4h8EdEZ-j6bFY9dySIi1ivKcZ_cKTLAYRYjT7rXnwZbdhyphenhyphenImmtoAHpakXSItYBK9NveP6cdO_Xh1KyoRYjFMM3GNoCfyd6tASgEJg9TFIDkLM99Qe473048t1DUY/s1600/photo-1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqyn0jrHkeMG_ChkX4h8EdEZ-j6bFY9dySIi1ivKcZ_cKTLAYRYjT7rXnwZbdhyphenhyphenImmtoAHpakXSItYBK9NveP6cdO_Xh1KyoRYjFMM3GNoCfyd6tASgEJg9TFIDkLM99Qe473048t1DUY/s320/photo-1.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">didn't actually like his hands messy</td></tr>
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<span id="goog_1483330213"></span>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com2tag:blogger.com,1999:blog-36335782951294349.post-73450615383438409872013-03-28T19:26:00.001-07:002013-03-28T19:33:32.764-07:00New post! First a couple words.<br />
Shout out to North Dakota for standing up for the unborn! No abortions past six weeks. That is a huge success in these sucky social times. I heard a stat semi recently. Planned Parenthood, last year, killed 996,000 babies and for every murder made $314 from tax paying citizens. Sick.<br />
Marriage is between a man and a women. It is not for homosexuals to tell me how to describe marriage to my children. If you want to make homosexual decisions then obviously you are free to. I am not going to exclude you from my tea party, in fact you would make it fun. I am just sick of people not saying what is right for fear of offending. Well, I don't care. If you think I am a bigot or a intolerant hater for having this opinion, then stop reading. But, in effect wouldn't that make you the intolerant hater? I can have my truth just like you can have yours. Deal with it. AND I think we should have heterosexual parades. It is time to stick up for God's intelligent design i.e. man and women i.e. procreation.<br />
Back to Edward.<br />
Video One:<br />
<a href="http://vimeo.com/62742206">http://vimeo.com/62742206</a><br />
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Video Two:<br />
<a href="https://vimeo.com/62749942">https://vimeo.com/62749942</a><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvOPOa_tgPQHykNyzMgWjXmsE5FKfediK-j3A7_xzH6ws0V_ETuG-kOZlDm43OTCL3r7QDliodziBlxbNzkuNbJPdjw9IkGxmrQwzWl8uZjVKPJUWkScVUYIqDXlfG05kQfHkftB_SHgQ/s1600/IMG_0547.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvOPOa_tgPQHykNyzMgWjXmsE5FKfediK-j3A7_xzH6ws0V_ETuG-kOZlDm43OTCL3r7QDliodziBlxbNzkuNbJPdjw9IkGxmrQwzWl8uZjVKPJUWkScVUYIqDXlfG05kQfHkftB_SHgQ/s320/IMG_0547.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">cheeto monster in his chair</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBKxQ0eH1TyCVn67tc8vJbTohuOAhZFzeNK8snh9Jnod3mLlAw6h1npTe6Qtg26CcYe1OyQJVzKhbNXYvmpytteZoD2JXo8pFFfw_BCizDDnkM6AK1sL3lIIlVs8KUVbEw6IBq-bM9BIo/s1600/IMG_0537.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBKxQ0eH1TyCVn67tc8vJbTohuOAhZFzeNK8snh9Jnod3mLlAw6h1npTe6Qtg26CcYe1OyQJVzKhbNXYvmpytteZoD2JXo8pFFfw_BCizDDnkM6AK1sL3lIIlVs8KUVbEw6IBq-bM9BIo/s320/IMG_0537.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">more cheetos </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwPqJl4tyVmGUZDYiyYLl6t8SB0rJVWLrUurdQyTFWrHVdNiZ0HX5jwsWU8-t0872bTr0z-LFrj0QBY7y3eE5nK-lIpfyNqFltSJZvz5VrumWmoKUWZi0ZfpElMQr5_eU5bQDdkkta4ZQ/s1600/IMG_0496.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwPqJl4tyVmGUZDYiyYLl6t8SB0rJVWLrUurdQyTFWrHVdNiZ0HX5jwsWU8-t0872bTr0z-LFrj0QBY7y3eE5nK-lIpfyNqFltSJZvz5VrumWmoKUWZi0ZfpElMQr5_eU5bQDdkkta4ZQ/s320/IMG_0496.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">better idea of chair</td></tr>
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PS....he has dropped a pound due a very long lasting cold. throws up every night and sometimes morning. not funJanessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com4tag:blogger.com,1999:blog-36335782951294349.post-90173946986437799912013-03-16T15:20:00.001-07:002013-03-16T15:20:50.186-07:00<a href="http://www.bloglovin.com/blog/5709273/?claim=xezq6xksx4u">Follow my blog with Bloglovin</a>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com0tag:blogger.com,1999:blog-36335782951294349.post-3211154426532321482013-02-01T10:59:00.001-08:002013-02-01T10:59:31.577-08:00Happy New Year! I am very glad to be rid of 2012 and excited for the new year! Edward weighs a fat 14.5 pounds! (down to 14.1 Wednesday) His spine is holding and I don't have any surgeries planned, as of now. (Possible wrist and thumb surgery in a year...maybe) The news on his spine is good. He had a traction xray done and his curve (while being stretched) is 47 degrees. The point of concern is 50, so I need prayers to keep it stable for many years to come! Or at least 6 months.<br />
Edward is talking a lot more and is rather funny. I can't quite tell who he is more like. H acts most definitely like me. Edward....I can't quite decide. He thinks he is hilarious. He is stubborn and smart as a tack...sounding like me..waaahahaha :) He knows exactly how to work me. My husband thinks it is rather sicking how easily he can get what he wants with me. His feet are holding pretty well. Doc said we have lost about 5 degrees but considering how tight his feet were to begin with, that is pretty good.<br />
Nothing new, really. Wednesday we have another arthrogryposis clinic. (It is Friday now) Allllll. Day. Long. I love my days with my boys. I love watching Downton Abbey and the Bachelor. I am obsessed with fabric and making stuff. I recently started to read again. WHAT?!?? I know. Not a whole lot mind you but enough.<br />
Oh, we have Edward's equipment. Freaking industrial stuff. Unreal how heavy it is. I also can't believe it is in my life but it is. (picture to come)<br />
I can't believe Edward is going to be TWO soon.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcIhUchtGtIC68_PR0opdplpmy4ighszmzzLtsOWRnQ-DYLNYbn96adOzs7Hi45l0vZ6wp94i8qqbKekYUsFxbcVrfHTZYh_YS4GnN7Ggd3oCXTWB_Jp2TCKe3EsRbLGbg-3_BjSqouHI/s1600/IMG_8075.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcIhUchtGtIC68_PR0opdplpmy4ighszmzzLtsOWRnQ-DYLNYbn96adOzs7Hi45l0vZ6wp94i8qqbKekYUsFxbcVrfHTZYh_YS4GnN7Ggd3oCXTWB_Jp2TCKe3EsRbLGbg-3_BjSqouHI/s320/IMG_8075.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">bored of the ipad so he napped</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijA5xaGk-nPmL2thKMzXUrW0SCcnTx5SUt6T-cFCD-OBTZxBg6-m3TtoDmmC2ZVhMJT-77RwF5T9qkdny68mtbiLoHHY4dGrAXnXmc-pDuIyTBQuDXxAbm4Jry3GmWOd-QSy56nw7Zlck/s1600/IMG_8073.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijA5xaGk-nPmL2thKMzXUrW0SCcnTx5SUt6T-cFCD-OBTZxBg6-m3TtoDmmC2ZVhMJT-77RwF5T9qkdny68mtbiLoHHY4dGrAXnXmc-pDuIyTBQuDXxAbm4Jry3GmWOd-QSy56nw7Zlck/s320/IMG_8073.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">rare snow day</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgER3Q_Iv23TUy-GYedPm-w7Vu2djOIfMTgwLmqRZWl0wXq6X84sqHPs6ajle4gI78I33ruiE1oczZayRa-jK0nkKm0JHq8zpOBYgr5PFEGBIV8yZC-q2EZUkOx2CZy-WHJ5pCHPVwqras/s1600/IMG_8173.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgER3Q_Iv23TUy-GYedPm-w7Vu2djOIfMTgwLmqRZWl0wXq6X84sqHPs6ajle4gI78I33ruiE1oczZayRa-jK0nkKm0JHq8zpOBYgr5PFEGBIV8yZC-q2EZUkOx2CZy-WHJ5pCHPVwqras/s320/IMG_8173.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">attitude with the pants i made him for Christmas</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNrgl_MuqB2R_yS55NUx-Q5ik73g6rB4QLHSl4sMMa5inGrzWdDrPq5VhcQLBmr0zUkBOgW6H2An_i3hKoow2NExaMr3OkCk1m0_4JiXoh5tCA1I2xtBZrZqIz1mgDS0jxrywRIlWCBrc/s1600/IMG_8149.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNrgl_MuqB2R_yS55NUx-Q5ik73g6rB4QLHSl4sMMa5inGrzWdDrPq5VhcQLBmr0zUkBOgW6H2An_i3hKoow2NExaMr3OkCk1m0_4JiXoh5tCA1I2xtBZrZqIz1mgDS0jxrywRIlWCBrc/s320/IMG_8149.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">loves of my life!</td></tr>
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<br />Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-32225208841618288012012-12-16T18:18:00.001-08:002012-12-16T18:18:15.457-08:00<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/OvN1jTkzXbY?feature=player_embedded' frameborder='0'></iframe></div>
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My mom showed me this video. It is amazing.<br />
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This is my Christmas picture of the boys. You don't understand how precious it is. The amount of work it took for Edward to pull himself up and then lean his head on his brother.Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com3tag:blogger.com,1999:blog-36335782951294349.post-80712412394175791482012-12-07T13:36:00.000-08:002012-12-07T16:05:13.155-08:00Scenario A:<br />
We are at the mall playing in the kid area with slides letting Edward go down the slide all by himself. He is LOVING it! Giggling like crazy. A lady sees him and stops by the wall of the play area and asks if he is special needs. We are like uh, yeah while continuing to play. She loudly tells us that her daughter is special needs and demands, "let me see him." Shocked at the audacity of this lady, I ignore her while shielding Edward. I fought my urge to show her my special bird finger. And my husband almost punched her in the face.<br />
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Scenario B:<br />
The boys and I are at Costco scouting the books and toys. A lady walks up to us and tells me that Edward is the cutest baby in the world. I thank her for her kind words and she continues by saying that he is just such a precious blessing from God. I say yes yes he his! She dotes on H for a minute too. Then she tells me her daughter, who is now 24, has cerebral palsy and has seizures and stuff. She tells me that doctors told them that she would never walk but that God was soo good. She said that when her daughter was seven years old she gave her life to the Lord and two days later she started walking. Tears are rolling at Costco.<br />
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So! Edward had his sleep study early November and I just found out the results. Not terrible news. But he is borderline for his oxygen intake at night and he stops breathing two times every hour. (apnea) Given his anatomy of his neck, nose and chest they will want to take his tonsils out which means another surgery, of course. They will want to put him on oxygen at night, but very little. So we shall see.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrgoeS2m5ceKMep9GsdiSUMPqhc1UUyrqz2rCagD645x8a34YxMdGMz_IF3APnO20Po6qhWSiNqS9_yAb-gCngH2BMaTLGITWOHKX-vpRgGgvzXMSG8pDxhsYNLZaDbFd-2pZJL9l-qg4/s1600/IMG_0458.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrgoeS2m5ceKMep9GsdiSUMPqhc1UUyrqz2rCagD645x8a34YxMdGMz_IF3APnO20Po6qhWSiNqS9_yAb-gCngH2BMaTLGITWOHKX-vpRgGgvzXMSG8pDxhsYNLZaDbFd-2pZJL9l-qg4/s320/IMG_0458.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Night of sleep study</td></tr>
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Oh. my. goodness. Edward is suuuuch a nut! He is talking lots more. Telling me stories that I can't understand! and he has been in timeout multiple times. I love my boys. They are beyond crazy! H has been such a great brother! He will give Edward his milk when he is crying, get me diapers, make him laugh uncontrollably and get really mad when I put Edward in timeout! They love each other sooo much, it melts my heart! But they are also massive butt-heads.<br />
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<tr><td class="tr-caption" style="text-align: center;">Edward standing at therapy...cutest spongebob butt ever!</td></tr>
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Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com0tag:blogger.com,1999:blog-36335782951294349.post-44338623170636313022012-11-12T12:20:00.000-08:002012-11-12T12:24:28.461-08:00<div class="separator" style="clear: both; text-align: center;">
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I want to clear a couple things up. Edward has Freeman-Sheldon Syndrome. What does that mean? Most of the time, I don't know. What will his future look like? I don't know. I would love say that he will be exactly like you and me. Obviously he won't. He is as smart as a tack. Cognitively he is all there and more! He is trapped in his body. Makes me sad. Will he walk? Yes, I do believe he will walk. Every child with FSS is different. There are no two cases the same. What does his life expectancy look like? I don't know. Kinda depends on his spine. I am faithful that the Lord will give him a long and happy life. But what is yours or mines life expectancy? Only the Lord knows. Will Edward talk...normally? Umm...I want to say YES. Is this a muscle or bone thing? All I know is that it is a mutation of the myosin/muscle gene. How big will Edward get? Umm..I am not sure. Maybe 5 feet? These kids are small. Guys...I am living day by day. That is all I can do. Out of all the grandchildren my grandparents have...we are talking 30+...I was blessed with this. I am excited for the day I get to ask Jesus why, what did You see in me, I am nobody but a stubborn loud-mouth!? Jesus has a great and mighty plan. I don't know what it is. Who does? I trust and know that He is good and I am thankful for that. He is always with me and my kids and will never leave me or forsake me. His promises are good. This world is crazy and scary. I am a sinner and fail constantly but I have been redeemed. ONLY by God's grace I am free from this life. So are you and our kids. God loved us enough to send His only <i>son</i> to die for our suckiness. If you have kids that should hit you like a ton of bricks. I couldn't give my kids up to die for anything. All we have to do is believe. Yes. I believe, Lord. I love You with my whole heart and soul. The pain that I feel is only temporary. All my trips to Seattle...the pain and hurt is so deep inside of me. But I choose to take comfort in Your unfailing love because You loved me first. I don't know why but you have knocked on my heart and I am listening, I am yours. "My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken." Psalm 62:1-2 "You who live in the shelter of the Most High, who abide in the shadow of the Almighty, I will say of the Lord, "My refuge and my fortress; <i>my God</i>, in whom I trust."" Psalm 91:1-2<br />
Let's lay our troubles down. Humble ourselves. Be free from all of this. God loves us.<br />
<a href="http://www.youtube.com/watch?v=3PN-BMHi5L8">http://www.youtube.com/watch?v=3PN-BMHi5L8</a><br />
<a href="http://www.youtube.com/watch?v=VzGAYNKDyIU">http://www.youtube.com/watch?v=VzGAYNKDyIU</a><br />
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Don't waste a second more of this life.<br />
It is not worth it to not believe.Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-89732817079057959282012-11-04T08:43:00.000-08:002012-11-04T08:43:29.447-08:00Post Surgery<br />
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It has been about three weeks since my baby has his Gtube surgery. That was a TOUGH surgery. They had trouble intibating him...due to his 'difficult' airway. He had massive trouble recovering. Edward spiked a temperature multiple times in recovery and his heart rate rose. They had to do extra tests and we had to stay an extra night. It was beyond stressful. I think I went into this surgery thinking that since we have been through this song and dance SIX times before that it will be just like the others. NOPE. Surgery will only get more difficult as Edward gets older. It is so emotionally exhausting and stressful. But just yesterday we actually started to use his Gtube. It has taken three weeks for him to get comfortable with his hole in his belly. (And me to wrap my brain around the ooze and the leakage from the hole in my babies belly....not an easy concept to be comfortable with.) I mean come on people. There is a <i>hole </i>in my 18 month old's belly. Not. o. k. His stomach was sewn to his already thin/non existent abdominal wall. Bla<br />
Yesterday we had an eye appointment. Transferred care from Spokane to Seattle. Um, yeah, they think Edward won't even have binocular vision. And he needs to wear a patch for hours in the day to make sure his left eye can get back up to par. AND they mentioned that he might have some ear disease due to the way he holds his head and that it has been reported with other babies like Edward. JOY. That is exactly what I wanted to hear. We shall see though.<br />
Next Wednesday Edward and I go to Bellevue to have a sleep study done. We stay over night and he gets hooked up to wires and monitors while he sleeps. Lord willing!, they will tell us that all he needs is an oxygen mask at night to help him sleep. Lord Willing. After the sleep study we will have yet another round of appointments.<br />
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<tr><td class="tr-caption" style="text-align: center;">recovery</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">tired...waiting to see brother from surgery</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">gtube</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">hole</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">edward entertaining himself while waiting for doc at recent appt</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguUbJ5jY_CCHayaxaXe8zol5ISmxwPBnnRTjYZxeJYz7sGsiheG2rWki_3vgcylPOnnxMHfMq6EZwsHe-INJ2zZVsNrO8oU0eOrvMywX_X9urxBOsddGYBZ-sPc-UHo4W81wcht67ygnw/s1600/IMG_0426.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguUbJ5jY_CCHayaxaXe8zol5ISmxwPBnnRTjYZxeJYz7sGsiheG2rWki_3vgcylPOnnxMHfMq6EZwsHe-INJ2zZVsNrO8oU0eOrvMywX_X9urxBOsddGYBZ-sPc-UHo4W81wcht67ygnw/s320/IMG_0426.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my awesome lion</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSXaXszJsIo74cLeh3ecLbY7mI6l9nY8sSL8IY0950VDZvQPzBjJECqpD8VTAaIyJjt4mrD7QS0F_FLkZAa5wtNo9WYdoG9nDRgmcwsEuKmXTgREAim8D8cXMRoMrn3AtqvTRXaQ4KzUU/s1600/IMG_0437.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSXaXszJsIo74cLeh3ecLbY7mI6l9nY8sSL8IY0950VDZvQPzBjJECqpD8VTAaIyJjt4mrD7QS0F_FLkZAa5wtNo9WYdoG9nDRgmcwsEuKmXTgREAim8D8cXMRoMrn3AtqvTRXaQ4KzUU/s320/IMG_0437.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my sweet loves</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn0b-nr7M7aa0IxzFZDw6_1na3KUlQvOblaPclBH-7Lw1kyVu6V6V8Jwnxe6yChOJ5rriXQl3n8rAWo8bsoQOinhtvIghThHCydIODda-QgceK2Uc89iC3ukLWQLRiZuPPqxfA-INzX6s/s1600/IMG_0438.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn0b-nr7M7aa0IxzFZDw6_1na3KUlQvOblaPclBH-7Lw1kyVu6V6V8Jwnxe6yChOJ5rriXQl3n8rAWo8bsoQOinhtvIghThHCydIODda-QgceK2Uc89iC3ukLWQLRiZuPPqxfA-INzX6s/s320/IMG_0438.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">spongebob boys</td></tr>
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Edward will hopefully be getting some specialized equipment to help him sit and walk! I am uber excited for that!<br />
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<tr><td class="tr-caption" style="text-align: center;">special chair</td></tr>
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Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com3tag:blogger.com,1999:blog-36335782951294349.post-76874637098489863452012-10-02T18:00:00.000-07:002012-10-02T18:00:41.516-07:006th Surgery in 17 monthsOk. So. Edward has his G-tube surgery on Friday. Thursday we have to make a trip up to Seattle for a spine appointment and his endocrine appointment. Last Thursday we had three appointments; pulmonary, upper GI scope, and pre-op. His upper GI seems to be well. Pulmonary/Lungs said that he needs a sleep study ASAP. That is scheduled for Nov. 7. We all don't think he is getting enough oxygen at night. And she recommended we go see an E.N.T for his nasal anatomy. (One side of his airway is pretty closed.)<br />
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<tr><td class="tr-caption" style="text-align: center;">not the best picture 17 months</td></tr>
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BUT here is a video of Edward rolling over. I do love him very much. Even though the weight of the constant problems overwhelm me, I wouldn't trade it for the world. Even though I have to remind myself that, yes! Jesus does love me, I wouldn't trade him for the world. Even though the thought of the pain from the past 22 months (from the moment they told us he had Trisomy 18 and wouldn't make it, to his G-tube surgery) could send me to instant tears, I wouldn't trade him for 1000 "healthy" babies. He is God's <b><i><u>LOVE</u></i></b> given to me in a not so 'normal' package. I wouldn't trade God's tangible love for anything.<br />
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<tr><td class="tr-caption" style="text-align: center;">my love </td></tr>
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<a href="https://vimeo.com/50644953">https://vimeo.com/50644953</a>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-47288244372922233432012-09-21T07:32:00.001-07:002012-09-21T07:37:04.941-07:00<div class="separator" style="clear: both; text-align: center;">
Yay! It was my son's birthday! He is three. I can't believe it.</div>
Oh My Gosh. I really want to be Peppy Peggy right now. However, there are so many appointments and new concerns swirling around in my head that I can't think straight. Honestly, these past couple months have been super, super hard.<br />
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There has been a lot of changes in my life. A lot of revelations. I don't know how to process everything. I am kinda at a loss of where to go from here, in relation to this blog and in general, i guess. I don't know. I am extremely overwhelmed and that is an understatement. I am having trouble focusing. I am dealing with a whole new round of Edward issues. The first of them being his attitude towards me. (it is awful) Sickness adds to worry when he is unable to gain weight. He currently last weighed 11.11 pounds. We have therapy three times a week on top of new round of Seattle children's appointments; GI, Nutrition, spine, lungs, upper extremity orthopedics, eyes. I am just tired. I need to get away.<br />
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Bare with me, I need to just jot down everything involving Edward. So, his last surgery went well...Hernia repair and circumcision. We were in and out within a day so that was wonderful. We have started receiving therapy three times a week. We have a special education teacher come over on Monday's and Edward LOVES her. She is great! They play and sing songs. Edward adores it! On Wednesday, now changed to Tuesday, we have feeding therapy. Edward was lucky, in that we got to be evaluated by the top feeding therapist. She was great. It was her that got the ball rolling on a swallow study. Then Fridays we have pt. So back to feeding, last week we had a swallow study done. It showed that when Edward swallows his food he holds it in the bottom of his throat, right where his airway is. It takes him on average 3-5 swallows to clear the food but doesn't actually clear it all the way. There is residue he leaves because he fatigues from all the swallowing. So, those are two major risk factors for aspiration. End of story, G-tube will be put in within the next couple weeks. (he most likely has aspirated which would explain some respiratory issues) That leads to our recent gastroenterology appointment. E has been throwing up a lot lately and not pooping as well as he should. He is on miralax which seems to be helping. He probably has reflux which should be figured out with the upper gI ultrasound next week. The GI nurse practitioner gave us another laxative which we will not be using because it is habit forming, I need to do more research on that. She also ordered us a upper GI ultrasound to make sure his anatomy is right before surgery of his Gtube. He had his blood drawn to check for thyroid issues and any gluten allergies (to cover our bases.) She called yesterday and said he has elevated thyroid hormones. Will be scheduling an endocrine appointment shortly. Next week is insanely crazy. We have a pulmonary appointment to figure out his lungs. Hopefully schedule a sleep study and more tests. At our last regular doc appt, his oxygen was a little low. Nutrition will be involved here shortly with the coming gtube. Can't think past all of this.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfxXipG5uGjmeVWSBPcncRRQpF3th7hMBSggkRMcTmaKFGvf8brEsD6OAzZ1ILqyd1AyIpIQG45FO2AI27gtyy1MnS3PJT80-B7ze7VnpyAg4xdWBA38Q_5FVCObVEDYtPxbx2pamDWpM/s1600/IMG_0135.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfxXipG5uGjmeVWSBPcncRRQpF3th7hMBSggkRMcTmaKFGvf8brEsD6OAzZ1ILqyd1AyIpIQG45FO2AI27gtyy1MnS3PJT80-B7ze7VnpyAg4xdWBA38Q_5FVCObVEDYtPxbx2pamDWpM/s320/IMG_0135.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">loving the sun</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8cdWVqYQqnLPwTXmca3JMKAJBX43xoD-cfcJP8UAQ2tPjHaZQGZ2a8DkVfoXLGmKt4nWqo6uq2Flqr93M6RqD1t30QfIAIoVcWsfvLxp4Yk-vTUuxfvl4B-E-yRYjUa1KXGvkX_XJEYs/s1600/IMG_0158.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8cdWVqYQqnLPwTXmca3JMKAJBX43xoD-cfcJP8UAQ2tPjHaZQGZ2a8DkVfoXLGmKt4nWqo6uq2Flqr93M6RqD1t30QfIAIoVcWsfvLxp4Yk-vTUuxfvl4B-E-yRYjUa1KXGvkX_XJEYs/s320/IMG_0158.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">remember last years pic?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSwDR-ijUhyphenhypheniPBef30DDm0yd4pv4cBQpU02n0WQisNO5iQsjCOvo06A2HOQ25chtR8TCzsCFZPwWX7j1MScJHDexIdo09H4j_V4zekXCC-NPZBJOFiRxYroU3W5qEeQVgpZheItT5sfHY/s1600/IMG_0166.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSwDR-ijUhyphenhypheniPBef30DDm0yd4pv4cBQpU02n0WQisNO5iQsjCOvo06A2HOQ25chtR8TCzsCFZPwWX7j1MScJHDexIdo09H4j_V4zekXCC-NPZBJOFiRxYroU3W5qEeQVgpZheItT5sfHY/s320/IMG_0166.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">has actual pants on!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje-nfIgWJg8abEwXQ9UNaJk1g0xHc5e4UMmhF241Si7Q7-vMkYTjzYR9rkGFuBwopZZdae_A7ddvpY4Tl5IScxf8eb-kAGuCuUnIazHY3wiXtRIKCuFUaDt-nCCLVPqVpU9vpA9ZDbo2Q/s1600/IMG_0302.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEje-nfIgWJg8abEwXQ9UNaJk1g0xHc5e4UMmhF241Si7Q7-vMkYTjzYR9rkGFuBwopZZdae_A7ddvpY4Tl5IScxf8eb-kAGuCuUnIazHY3wiXtRIKCuFUaDt-nCCLVPqVpU9vpA9ZDbo2Q/s320/IMG_0302.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my boys acting crazy!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI8lUTxVBXXVWZFG9N9QYsOpuy7NNhVziADvPs6ljVNGYoWTK1MraU7ax-6TEzkSafdmN94DxRBwihyphenhyphen8HvGq7Owz7X-PCq9AsSqFYP4BTZTaxWsri8xzTwaPV4UNPmuNLcVZYoUc4H5xE/s1600/IMG_0284.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI8lUTxVBXXVWZFG9N9QYsOpuy7NNhVziADvPs6ljVNGYoWTK1MraU7ax-6TEzkSafdmN94DxRBwihyphenhyphen8HvGq7Owz7X-PCq9AsSqFYP4BTZTaxWsri8xzTwaPV4UNPmuNLcVZYoUc4H5xE/s320/IMG_0284.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pretty appropriate</td></tr>
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<br />Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-44341644364324869702012-07-25T08:51:00.002-07:002012-07-25T08:52:15.326-07:00StupidI am not even kidding, at my house, when it rains it pours stupidness. First off, I had to go to the doctor, uninsursured, the other night because my ear was hurting pretty bad. Both my husband and I thought it was an ear infection. Turns out I have a swollen jaw joint. (TMD) I bite my nails allllll the time and 90% of the time unconsciously clench my jaw all day and night. So the stress of my life has finally caught up with me. I realized two things about that trip to the doc. First, I have even more compassion for my sweet baby boy. You do feel really vulnerable sitting up on that bed. Second, I am not handling my life as well as I thought I was.
Then our Mac hard drive sucked it up. Of course we didn't have it backed up. Pray I can recover our pictures from it.
Tomorrow is/was surgery for Edward. Middle of the fricking summer and he is SICK. Are you kidding me? Nope. I DON'T want to reschedule!!!!!!!!!!!!!!!!! I am soo annoyed. Everyone in my house is sick. Not a terrible sick just an annoying sick, you know? Can't decide if I should cancel. Pray, anyways, that surgery goes well.
In ten minutes we have a lady coming to do an evaluation on Edge. We have to go through bologna again to get good pt/ot/speech therapies for him. Don't get me started on this. Stupid moving.
Can't post a pic.Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-47133751495733450632012-07-16T09:44:00.002-07:002012-07-16T09:44:30.876-07:00changesIt has been ages since I last blogged!<br />
Well, in fourteen months we have moved twice and been through four (coming up on five) surgeries, and countless trips back and forth to Seattle along with countless casting. That is crazy/tiring to even think about!<br />
We moved. It was definitely an adventure. We were sad to leave but excited to start a real job. After seven hours in the car and a flat tire, we finally made it to our house and did a walk-thru. My pants were soaking wet and the house was filthy dirty. We were sooo upset! I guess the carpets had JUST been cleaned minutes before we pulled up. So we stayed at a hotel that night. After some text messages to the leasing agent, we decided to pull up our sleeves and do some hard labor ourselves. Ugh. It was soo freaking nasty. The leasing agency has been a nightmare. BUT, we love the house.<br />
The Fourth of July was nice. After an ER visit with Edward, he had bloody vomit, I got back home to have fireworks literally in our front yard. I have never been in a city where fireworks are legal.<br />
I feel like so much has happened that I can't even remember.<br />
Recently I have been on a freezer meal kick.<br />
Edward has lost weight and weighs in, WITH his AFO's on, at 11.8 lbs.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKz8KvPzrAzsHg6st-rKc7gYVVx9_9KItrn3exoQbgR1eIKsXDKlgvCPR-nigL1ItTLQdc2kJi-PGfydsNpqlx3xFQx9bPJLjx9QKwaETeLHVXIHayxxuQeKQFnWdU2k7xrsGFMVpNWkQ/s1600/IMG_0016.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKz8KvPzrAzsHg6st-rKc7gYVVx9_9KItrn3exoQbgR1eIKsXDKlgvCPR-nigL1ItTLQdc2kJi-PGfydsNpqlx3xFQx9bPJLjx9QKwaETeLHVXIHayxxuQeKQFnWdU2k7xrsGFMVpNWkQ/s320/IMG_0016.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">tiny shoes</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">loved his sucker</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">all his casting glory</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaUhgm4NEmSLDwz-S1nQrh51W-oc9XI41NFhsIC2LaqL_JxrYdvt6qv0KP6zuxnu17zkqZ6MV6omuuxn2wuxIAsXv0Gh8IrnkGmYMVZgpD1tcsbizi3_z9IMT4nRYViVzjRJW-k4hyo7Y/s1600/IMG_0206.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaUhgm4NEmSLDwz-S1nQrh51W-oc9XI41NFhsIC2LaqL_JxrYdvt6qv0KP6zuxnu17zkqZ6MV6omuuxn2wuxIAsXv0Gh8IrnkGmYMVZgpD1tcsbizi3_z9IMT4nRYViVzjRJW-k4hyo7Y/s320/IMG_0206.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">love love love</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjucknxg5a1YvI0b-FpzVXXfdAUKV3e88BBqxD2W5Mz4wjZTYTuVPEwV32iQnowHp_jYD15-9dY-MPxnaCR16BgSIDFL7OVxB0iTN5nHr_YP3ljVKvciMxqZYbVcJjVZcd3lTmuyrBJH_w/s1600/IMG_0230.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjucknxg5a1YvI0b-FpzVXXfdAUKV3e88BBqxD2W5Mz4wjZTYTuVPEwV32iQnowHp_jYD15-9dY-MPxnaCR16BgSIDFL7OVxB0iTN5nHr_YP3ljVKvciMxqZYbVcJjVZcd3lTmuyrBJH_w/s320/IMG_0230.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">hair cut makes him look older</td></tr>
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Edwards has had massively hard poops which was the underline cause for the ER trip. The X-ray showed his backup. So he has been on miralax and will most likely be seeing a GI doc in the near future.b <br />
Edward is talking more. Copying more. Has more attitude.<br />
He waves hi.<br />
He seriously thinks he is hilarious.<br />
His spine brace is making weight gain a challenge. That needs to change.<br />
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<br />Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com0tag:blogger.com,1999:blog-36335782951294349.post-42558587261591047662012-06-03T22:35:00.001-07:002012-06-03T22:35:29.912-07:00I am busy! My husband got an awesome job on the other side of the state, thank the Lord! So we are moving again! We have yet to find a house and I am a little stressed about that. We move in two weeks. Monday we fly in to look and find a place and then Edward has a series of appointments at Children's.
Edward was cast for his spine on Tuesday. His last X-ray showed that his spine hadn't gotten much worse! Praise the Lord! So we decided that a brace would be the best option to hold his spine from getting worse. We will get his brace this Wednesday.<br />
So, I just listened to an amazing sermon! "Joy in suffering"<br />
<a href="http://marshill.com/media/rebels-guide-to-joy/the-rebels-guide-to-joy-in-suffering">http://marshill.com/media/rebels-guide-to-joy/the-rebels-guide-to-joy-in-suffering</a><br />
Everybody suffers. In some way shape or form and I want to suffer well. You know, sometimes I like to play the victim. Sometimes I like people to feel sorry for me and what I have been through. I think, "don't people understand what I have been through? If they knew they would be nicer to me." That sucks to admit, but it is true. That is not suffering well. I don't want to use my hurt as a crutch to gain attention or even praise for my own ego. I don't want Edward to be in vain. He is so precious and God's true work in form that I want his story/life to be for God's glory. I know it will be. I want to be humble enough so God can use me, too. I want my 'suffering' to be purposeful not purposeless! I believe that joy is a choice. I can decide to be happy in all circumstances. 2 Corinthians 12:10 "That is why, for Christ's sake, I delight in weaknesses, insults, in hardships, in persecutions, in difficulites. For when I am weak, then I am strong." James 1:2 "Consider it pure joy, my brothers, whenever you face trials of many kinds.." Romans 5:3 "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance.." I loved this quote by a Romanian pastor who suffered under Communist rule, "Christians are like nails, the harder you hit them, the deeper they go." I want to know God better through my trials. That is why I want to suffer well.<br />
My boys be crazy. Seriously! Harvey likes to annoy Edward. Edward, in turn, likes to make awful sounds when he is annoyed! Most the time, Edward adores Harv. Harvey will jump or sing or do whatever to make him laugh or smile. Every morning when he wakes up, he tells me to go get Edward. I love seeing their relationship get stronger! Harv is very protective of his baby brother!<br />
At Edward's last cast appointment he weighed 11.9 lbs! That is pretty good...I would like to see 13, but I will take it! He gets his AFO's on Monday! Yay! I will post more pictures when he gets his brace and afo's!<br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-90102763448078335652012-05-08T15:20:00.003-07:002012-05-08T15:20:48.790-07:00awesome<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">"I was born awesome"</td></tr>
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Hi everybody! So Edward is ONE! Can't hardly believe it. He is such an awesome kid! He is a good natured boy and definetly lets me know when he wants/needs something. He loves attention, the mornings, and his brother. I could go on and on.<br />
His feet look pretty good! I can't wait for him to be in his AFO's so we can work on walking!<br />
There is a lot change that is about to happen in our lives. We might be moving again. (Exhausting to even think about.) Lame, but we are excited to
see what the Lord has in store for us!<br />
Last weekend I was able to meet my new niece! My husband's brother and his wife had their fourth child and their first girl! She is such a doll! I fell madly in-love with her! I wasn't expecting it but afterwards I was really emotional. After holding Mikayla and cuddling with her, I realized that that's how I should be holding my baby! I mean I have held other babies since Edward but it was the very first time that I have actually felt 'sorry' for Edward. (I hope he forgives me for
this.) It was an awful, awful, awful feeling. I felt sorry for the things he won't be ble to do in life...things he
should be able to do. I mean, poor Edward, he gets pity stares alllllllllllll the freaking time! The last thing he needs is for his mom to feel that way. So I got it out of my system and am better now. I realized that I need to
treat Edge like I do his brother. He will be able to do anything he puts his mind to. And that's that.<br />
Edward is fricking awesome! So is his brother!<br />
It was also brought to my attention that I need to watch the motives of the people I let hang around my kids. The very thought of people befriending my boys so that their kids can learn 'compassion' makes my blood boil! Makes me SICK just thinking of it! How about YOU teach your kids to be kind NO matter the situation. Oh man...<br />
That's about it!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7DNTgs55TQoEhUi3PsNG43hkkXrtYUQciUkZo7-z5u3ns1fHID61qGYL-Kg-Rw2st6pUiTSisQ7n5zuyKIwHPR5fVDclbUzUUck1XsdtxGvA5FUJ70ceKJywPVucOVKrcuKFLXNw8Kf0/s1600/photo-4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7DNTgs55TQoEhUi3PsNG43hkkXrtYUQciUkZo7-z5u3ns1fHID61qGYL-Kg-Rw2st6pUiTSisQ7n5zuyKIwHPR5fVDclbUzUUck1XsdtxGvA5FUJ70ceKJywPVucOVKrcuKFLXNw8Kf0/s200/photo-4.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">so so so unhappy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKZLbGMCbS-WL0k5hteDEffKL7zJSnh5qmMczDCsmbvfT47N8iKiEhcC2JrRTdfl-kT8BuLcqCuLzENgQv4eo350tMNzPVBGEBINSSWROW90I5e4JkZnuxiWZPD2ho81xnuVUjaL_2L7g/s1600/photo.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKZLbGMCbS-WL0k5hteDEffKL7zJSnh5qmMczDCsmbvfT47N8iKiEhcC2JrRTdfl-kT8BuLcqCuLzENgQv4eo350tMNzPVBGEBINSSWROW90I5e4JkZnuxiWZPD2ho81xnuVUjaL_2L7g/s200/photo.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the 90 degree looks odd to me!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyGzEclri8_9TauZUpqieu00YCImQTaf_PT58USNG36c7k8TeocW7n6BQEWU1dgyigma-2D0q5truIC_8SLugJjnLpCJkoBTyBFa_N-0D6_cO1-yujvt38Z8lRs1_XtQmxEN5Q2544a6s/s1600/photo-1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyGzEclri8_9TauZUpqieu00YCImQTaf_PT58USNG36c7k8TeocW7n6BQEWU1dgyigma-2D0q5truIC_8SLugJjnLpCJkoBTyBFa_N-0D6_cO1-yujvt38Z8lRs1_XtQmxEN5Q2544a6s/s200/photo-1.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pins in bottom of feet</td></tr>
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</div>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com2tag:blogger.com,1999:blog-36335782951294349.post-69159004720945653352012-04-15T22:16:00.000-07:002012-04-15T22:16:47.894-07:00Birthday!<div class="separator" style="clear: both; text-align: center;">Happy Birthday to my Sweet Boy! </div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVtJhNwb1TYsRoGugzHFOyuqr7Ng9bu1BVrT_xBvoZoXdZe_PbghhBwk-QBZFWMd5cve0rg1LE_BXl7xcpM9IayOgefjE5UCdXhdyGYIPIF1fz0wl9pgd6HiHgoUqVlRSrQpQPpV8nbIk/s1600/1c19f2ee871511e181bd12313817987b_7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVtJhNwb1TYsRoGugzHFOyuqr7Ng9bu1BVrT_xBvoZoXdZe_PbghhBwk-QBZFWMd5cve0rg1LE_BXl7xcpM9IayOgefjE5UCdXhdyGYIPIF1fz0wl9pgd6HiHgoUqVlRSrQpQPpV8nbIk/s320/1c19f2ee871511e181bd12313817987b_7.jpg" width="320" /></a></div>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-78533849038039754732012-04-06T17:49:00.000-07:002012-04-06T17:49:47.351-07:00Subdue the emotion of it allWe had a neurology appointment on Monday to explain Edward's soft spot in his brain. He said it was most likely there since birth and could possibly effect his motor developement in his right side. He said it could have happened during the third trimester from me and my blood. That sucked to hear. <br />
After his appointments I went to some thrift stores and I found the most amazing pair of boots for $1.29!! Yup, it was my lucky day! My size and everything!!! I was on a mad high from that amazing score. Then my brother and his wife threw the BEST surprise birthday party for Edward! It was the sweetest thing in the world! I adored it! Thank you guys!<br />
Monday night was tough because I had to follow Edwards surgery feeding schedule. I was up with him at 1:30 am, 3:30, and 5:30 making sure he was full...then we checked in at 6:15. I was strangely calm the whole day! It was weird. Could have been because I was still so thrilled about my boot find...haha. Edward is such an awesome kid. Surgery was faster then expected. Our doctor is a rock star! I was soooooooo excited to see Edward! Our doc said that he was "über" pleased with how Edward's feet turned out and said that the talectomy was nessecary. He said that there was no fluid around the joint and that his tendons and ligaments that were stuck to his bone were like glue. (which is why there was no movement...that is just so crazy to me.) The bad news is that his hip joint is pretty much the same. They formed a sudo-like joint up by the top of his pelvis. He said the joint is like cartilage which is why, again, there is hardly any movement. So he doesn't think reducing his hips will be an option. Instead, he thinks it might be best if we break his femur bones and put them into a better position for hygeine reasons. So he would break the bone and put pins in. Suckage!! I just pray he will walk and sit at a 90 degree angle. And we only got like three degrees from clipping his abductor muscles. Boo.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRIu03Z0MyBQNB7RySQ4JoV2JLlg-01Z6aAANzqhyHSzauuql7TDeQIIiqijWGsO0tHpYcWFwuzihKdDiLW3EZA0q7w4hF1Xzufxw6A1ngsaal7Z2axtSoH0W6krud0lc3vlV3heJRVG4/s1600/photo-3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRIu03Z0MyBQNB7RySQ4JoV2JLlg-01Z6aAANzqhyHSzauuql7TDeQIIiqijWGsO0tHpYcWFwuzihKdDiLW3EZA0q7w4hF1Xzufxw6A1ngsaal7Z2axtSoH0W6krud0lc3vlV3heJRVG4/s320/photo-3.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">at home sleeping</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwYuc2ACSA9TU6UqJYyhOXqoxKovUOb9b173G5f_NmJR0HpQk8fMpgGNTwPQOn2DTokZnk79vrg7kq37m6gSeloGSkICieLt4HOhuz8cgOHVSAx35FeWb87k0o6DudlR6LgIMloQYnMF0/s1600/photo-4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwYuc2ACSA9TU6UqJYyhOXqoxKovUOb9b173G5f_NmJR0HpQk8fMpgGNTwPQOn2DTokZnk79vrg7kq37m6gSeloGSkICieLt4HOhuz8cgOHVSAx35FeWb87k0o6DudlR6LgIMloQYnMF0/s200/photo-4.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my amazing $1.29 boots</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZdY15_w1SLH4f0F4v_MjmjPI2TCkgyxd6Qwl-hTaXLs6w6sCBeA8rug_ARmWygXYFe6oFTn-a8qlHSKio5Cndk7H6irVCQIXKnUManhdt4fAfkN_zEG7XDhrXCt5eQ85ug-A37optDGU/s1600/photo-5.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZdY15_w1SLH4f0F4v_MjmjPI2TCkgyxd6Qwl-hTaXLs6w6sCBeA8rug_ARmWygXYFe6oFTn-a8qlHSKio5Cndk7H6irVCQIXKnUManhdt4fAfkN_zEG7XDhrXCt5eQ85ug-A37optDGU/s320/photo-5.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">look at those feet!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQYmoY6D-MAA09LiWwqLfvEl5Z2CWVhyphenhyphen82ufv7kSyzK3qHptvZ0pOrTmaTGKuED48WFu0RNKXytilLgNQt1kpNl5j99VEl4i-YtJIrCdPCrHrfm4fGIru3bF-TkbHALK9bXrNG2upPiwo/s1600/photo-6.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQYmoY6D-MAA09LiWwqLfvEl5Z2CWVhyphenhyphen82ufv7kSyzK3qHptvZ0pOrTmaTGKuED48WFu0RNKXytilLgNQt1kpNl5j99VEl4i-YtJIrCdPCrHrfm4fGIru3bF-TkbHALK9bXrNG2upPiwo/s320/photo-6.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">having a reaction to some meds</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ01DyY0yGLDKVCFCaAdL41aJWbZVuA7CKDu11me7XfntzX6P49U2ImDpTX58PKq1xUUvVYOZ9GCyAqM6IoWqYogCg7MWVr-3VYiA83rjfHg-jUkcjxYslA_37DVEEw7mXsOMONol4ogs/s1600/photo-7.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ01DyY0yGLDKVCFCaAdL41aJWbZVuA7CKDu11me7XfntzX6P49U2ImDpTX58PKq1xUUvVYOZ9GCyAqM6IoWqYogCg7MWVr-3VYiA83rjfHg-jUkcjxYslA_37DVEEw7mXsOMONol4ogs/s200/photo-7.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">right before he was taken back</td></tr>
</tbody></table>I felt super humbled by the support that we got from family and friends. I literally have the best family and friends anyone could ask for! Even acquaintances texted me with prayers and support. And the prayers that I am not aware of, thank you! I know that through all the prayers I was able to handle everything and that Edward was in the Lord's hands. This is the thing, I don't want to think about it all. I don't want to get emotional. I know that if I let myself go and really feel everything, I would loose it. I have experienced that once before (a year ago) and don't ever want to experience it again. I have to keep everything at bay. Edward's birthday is coming and I don't want to be emotional. I just want to be in the now and not look back at what happened a year ago. I am beyond thankful for my life and my boys and I want to focus on that. Dwelling one the past is not healthy, right? Pictures are bad. This year has been one heck of a freaking year but we made it and we are all better for it! Edward is God's gift to me and my family, for His glory, and I would do it alllll over in a heartbeat! And I would take 10 more FSS babies. I need to focus on the now and Edward's spine and the many more surgeries that are coming in the very near future.<br />
So, with that said, all your prayers and concern for Edward have meant the world to me! God's love is good! Psalm 30:12 "To the end that my glory may sing praise to thee, and not be silent. O Lord my God, I will give thanks unto thee forever." What an awesome verse of joy, gratitude, and thankfulness. I love it.Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com0tag:blogger.com,1999:blog-36335782951294349.post-48516942984505850472012-03-30T14:34:00.001-07:002012-03-30T14:35:29.393-07:00Surgery is coming...soon<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/AVvXsEgpdVyBO6M6Z12Y_65LAZqws55wboeGS3-IBZAYcD0N9WGsJr1vt6S95w93_M7XPZEz_1jhzK2qGAAlRxrACM8gT-UAl46y1CP30AD47oEa2cgWJFLMg98eOit4WJJHq1veJrpIrGRTx6A/s1600/0.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpdVyBO6M6Z12Y_65LAZqws55wboeGS3-IBZAYcD0N9WGsJr1vt6S95w93_M7XPZEz_1jhzK2qGAAlRxrACM8gT-UAl46y1CP30AD47oEa2cgWJFLMg98eOit4WJJHq1veJrpIrGRTx6A/s1600/0.jpeg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sleeping</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVyN8od1vD3BZEtOihrlGM5XlMgUuyP3n82pQq7yvxFpW3eNDMhR0oEtQa4YcRsIrmvgdzq3Ol0C7wINBY2gVQ-0YsyNv5e8dx_I8PYqhivwrkBu_MlIIeg0iDJ3fSbuBAEWYSSyUm1Ys/s1600/IMG_9691.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVyN8od1vD3BZEtOihrlGM5XlMgUuyP3n82pQq7yvxFpW3eNDMhR0oEtQa4YcRsIrmvgdzq3Ol0C7wINBY2gVQ-0YsyNv5e8dx_I8PYqhivwrkBu_MlIIeg0iDJ3fSbuBAEWYSSyUm1Ys/s320/IMG_9691.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">cutest face ever!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikUe8yPljbRBsbFsASDWki536kMYyzxDYJnlN_EjvxcKaGiRpTaA9zlIS82tWrem8lvCf1TIfjZDqZbUgwB-uhkMoeA7sO32AY8QbUfwdm5lr2X0RZv78VGP0vLGgphyw9enrn8okOHsY/s1600/photo-1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikUe8yPljbRBsbFsASDWki536kMYyzxDYJnlN_EjvxcKaGiRpTaA9zlIS82tWrem8lvCf1TIfjZDqZbUgwB-uhkMoeA7sO32AY8QbUfwdm5lr2X0RZv78VGP0vLGgphyw9enrn8okOHsY/s320/photo-1.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">love edjy's face</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh27oJMwq4bL4n1uJ4Vu_e-qP3LVJz9uiRfAq8juajE_L80EnNebWul519jTkg5QHXXx-KMfoYLDspwiaKjhTXGPr_zKfT2lLOJCX40EWR0X9FsWOSe78UqUxvnyQWsqpBqj59o87qkoTE/s1600/IMG_9704.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="231" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh27oJMwq4bL4n1uJ4Vu_e-qP3LVJz9uiRfAq8juajE_L80EnNebWul519jTkg5QHXXx-KMfoYLDspwiaKjhTXGPr_zKfT2lLOJCX40EWR0X9FsWOSe78UqUxvnyQWsqpBqj59o87qkoTE/s320/IMG_9704.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">big bro needs to be center of attention</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG3GwBam6-KntRxMXnkJ-hzLNc4-L879hGsK4miV5uD4oS-lQapjf48y29aMT2INfrIU2qGzjddI9vdW7LKs35YH6SGtfvuUSkI9Wq1fS2le7seePM8Hfhkld4Pw4M1IbUX06qj1js16c/s1600/IMG_9742.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG3GwBam6-KntRxMXnkJ-hzLNc4-L879hGsK4miV5uD4oS-lQapjf48y29aMT2INfrIU2qGzjddI9vdW7LKs35YH6SGtfvuUSkI9Wq1fS2le7seePM8Hfhkld4Pw4M1IbUX06qj1js16c/s320/IMG_9742.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">new haircut</td></tr>
</tbody></table>This will be quick. In one week we visited the urgent care, er, and two visits to our pediatrician. Edward got a CAT scan at the er and he probably caught the flu there. In that same week it was my husbands 30th birthday! It was a very stressful week. The good news out of all that was that Edward now weighs 10.6 lbs! I can't tell you how relieved I was that he has gained weight!<br />
As surgery creeps closer, I am starting to get really nervous about it. Aaahhhh!! This is a big surgery and he will be under for probably five hours. That in itself is scary and the fact that we are removing a bone from his foot is very unsettling. I have done my homework on this surgery and I feel confident in our doctors ability. There is no right or wrong decision so I have to pray that this will have a good outcome for Edward. Ahhhh! I hate this feeling! I have had a lot of outside opinions and that is very hard to deal with. I just have to put my trust in the Lord that He will work it out! Ahhh! Please pray for Edward! I have been house bound for the past two weeks and we are going a little crazy. A lot crazy really. April 3rd is the day.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNm5Ob7wra3-t_brsv3VCLVLR12xvfSIpNf4iNzvs_N2vuK176jORbahFODXQKZUbeyDeP4M2J_V05TnjnMzmMMHS1lDKntO7MlYRzPe9SC9xtKBOjBt95cD-s1JLJD0RKC9BSk1VpBfA/s1600/ab389d56666111e180c9123138016265_5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNm5Ob7wra3-t_brsv3VCLVLR12xvfSIpNf4iNzvs_N2vuK176jORbahFODXQKZUbeyDeP4M2J_V05TnjnMzmMMHS1lDKntO7MlYRzPe9SC9xtKBOjBt95cD-s1JLJD0RKC9BSk1VpBfA/s1600/ab389d56666111e180c9123138016265_5.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">hand braces</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS0oRRiKh2D5SDapnQqOmlmOnuQmODJENVhIrqn577HKiow7XL5ucn2Fo7nbe_WHZqS7fcMIhutVYaQqvQ8uuZ1FaVvETU3-d3RzW6TrAysNrSh1ozlyPmNezkVVT4NV7MbzKu8otpQFs/s1600/8d6756665fd411e1a87612313804ec91_5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS0oRRiKh2D5SDapnQqOmlmOnuQmODJENVhIrqn577HKiow7XL5ucn2Fo7nbe_WHZqS7fcMIhutVYaQqvQ8uuZ1FaVvETU3-d3RzW6TrAysNrSh1ozlyPmNezkVVT4NV7MbzKu8otpQFs/s1600/8d6756665fd411e1a87612313804ec91_5.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">omg the sweetest</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgls06H89axIa4b7uQTkgKjYjt86DpkRQ2pYCleK92Q7xx4TV48fdhk6u7wR7blIISdt3nGEzG285899loTdmSb-zSHichl0tq1HbwhyphenhyphenLhtAt1j6wJUKaIYlKelKycntWCamE0vsJH5zyE/s1600/photo-2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgls06H89axIa4b7uQTkgKjYjt86DpkRQ2pYCleK92Q7xx4TV48fdhk6u7wR7blIISdt3nGEzG285899loTdmSb-zSHichl0tq1HbwhyphenhyphenLhtAt1j6wJUKaIYlKelKycntWCamE0vsJH5zyE/s200/photo-2.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">poor babes spine</td></tr>
</tbody></table>Could you guys also pray for his spine. That is one thing that is one thing that really weighs heavy on me. It can affect his organs and in turn his life span. I pray everyday that the Lord will stop the progression and straighten it out. His curve is large enough for surgery right now. After he heals from his feet, we will start bracing his spine asap, well pending hip status.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjagMbzyPpXyLpDeuNcpSWiW2npaNplPrNyOpu_aXeXz1_qerfbRnwoWaCIb9vLYwjPeRDzaM616mWnuxqQHthaK9L77sWkeQOK4ltaTHOYbyTGkp1TEJVMzR6RZ7Fg9dPc1lvu0u0yiK8/s1600/IMG_9754.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="152" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjagMbzyPpXyLpDeuNcpSWiW2npaNplPrNyOpu_aXeXz1_qerfbRnwoWaCIb9vLYwjPeRDzaM616mWnuxqQHthaK9L77sWkeQOK4ltaTHOYbyTGkp1TEJVMzR6RZ7Fg9dPc1lvu0u0yiK8/s200/IMG_9754.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my boys running outside...edward loves it</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC4Wtf5znW6LxK_GQVfaBWjWuudg8wrxSy2r3G508ZNjyHg_XiiffvKOBMWtvAVofbwtxklxraPup5iJLg2pAERj6b9DOa4zeAemLuKVvApJG-xymCvSXY8AjtPr56WzGg3vZXbLxHAy0/s1600/photo.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC4Wtf5znW6LxK_GQVfaBWjWuudg8wrxSy2r3G508ZNjyHg_XiiffvKOBMWtvAVofbwtxklxraPup5iJLg2pAERj6b9DOa4zeAemLuKVvApJG-xymCvSXY8AjtPr56WzGg3vZXbLxHAy0/s200/photo.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">roaming Target making a mess</td></tr>
</tbody></table>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com3tag:blogger.com,1999:blog-36335782951294349.post-2034715239466475392012-02-27T19:13:00.000-08:002012-02-27T19:13:38.071-08:00lovelyHere is a quick list of the current happenings:<br />
-spine is getting worse by about 7 degrees in past four months<br />
-surgery has been delayed for six weeks due to his RSV and double ear infection he had three weeks ago and another more recent cold on top of it<br />
-Edward had his first tooth that surfaced yesterday<br />
-he is ten months old<br />
-he weighs 9.9lbs<br />
-he cries/whines whenever he sees me so he can get what he wants<br />
<br />
Yup. What do you do? I wish his surgery wasn't so far out. I feel like life can begin after this surgery. In my mind (fictional thinking) I feel like Edward will magically become a "normal" ten month old. Not true. It will always be the next surgery, the next brace, the next cast, the next "thing." Such is our wonderfully blessed life.:)<br />
So I have to tell you about my little struggle that I recently went through. A couple weeks ago I went to a moms group at church and the speaker spoke about depression. (haha I just remembered that I had walked into the church that day with TWO different shoes on!!!! I couldn't believe it! That should have been everybodys first clue that something was off! But they just laughed at me.) I had been emotionally struggling for awhile but I held it together while listening to the speaker. The thing that hit me was when she spoke about her pride and thinking she was mentally strong enough to fight the battle herself. Ok. So whatever, I went home and went on with life. The next week, last week, we had to go to Seattle for preop appointments. At the same time my friend was having her baby, and side note, I know about eight or nine friends who are pregnant around me. The day we traveled to Seattle was probably my lowest day. Adam was seriously worried about me. I had gotten myself into such a pity party that I couldn't see the light. I have this problem of comparing my life to others and I couldn't see the blessings in front of me. It just seemed like everybody else was getting their 'fairytale' life. Here I am traveling across state to deal with one of many surgery appointments for my baby boy. What parent wants that? And it could be soo much worse and I know that, but I couldn't accept that, my situation was the worst in the frame of mind I was in. I didn't really talk the whole trip as I was battling in my mind with no avail. Then I remembered that I couldn't get myself out of my mind myself. Words from the depression talk come back to me. I started to pray hard. I realized the devil was attacking me and I asked Jesus to fight the battle for me, I couldn't do it myself. And He did! I kinda snapped out of it. I think as Christians we have to be mindful that the enemy is actively trying to bring us down and that we desperately need the Lord to help us fight the battle. Romans 12:2 "Do not conform any longer to the pattern of this world, but be transformed by the renewing or your mind. Then you will be able to test and approve what God's will is-his good, pleasing, and perfect will."<br />
So, I am doing well. I have to do my do diligence and keep my eyes fixed on the important things. Enjoy the present and read my Bible everyday. Edward is God's perfect will and I get to be his mom. I love my life.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiey0unyEdA8thFIF2zviNMqLZjctXuDC_EPEv5ZZjUt-au4ESnucgjCTlccu77z28YNiJlunXfOfdhZ6Y3KkkU8YxnyPtSq5905GY7Ea4uEOaQNMKJdvRR68tU5MWkw2gbmCRFNZWp48/s1600/IMG_9660.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiey0unyEdA8thFIF2zviNMqLZjctXuDC_EPEv5ZZjUt-au4ESnucgjCTlccu77z28YNiJlunXfOfdhZ6Y3KkkU8YxnyPtSq5905GY7Ea4uEOaQNMKJdvRR68tU5MWkw2gbmCRFNZWp48/s200/IMG_9660.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">funny big brother</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRN8EZ1tVYIZVpEf7MnHSPLuj1_BYLy8-q3eVyZe3U7BCAbAHoz620GZAU3YZaDyKxTML5nxm6019DCRsgJ79BAsAE9_qHIUxM5VS-xz74ZMxTxM1sz-oj17ejR9B8enKqX2jhJik97kQ/s1600/IMG_9643.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRN8EZ1tVYIZVpEf7MnHSPLuj1_BYLy8-q3eVyZe3U7BCAbAHoz620GZAU3YZaDyKxTML5nxm6019DCRsgJ79BAsAE9_qHIUxM5VS-xz74ZMxTxM1sz-oj17ejR9B8enKqX2jhJik97kQ/s200/IMG_9643.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sweetness</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5eZ1PS4XxkHkDOex4ldsuZEUZa1osRimP07GZEhpMdR1MhDjy91q05U1-Pnh1rGn5SCla6esS6Jwv4EpqUoQX_mCl0v6PvTvsJC_p-ZsfK2fXwoS2mCOEWLvpCyr_aQjy-LAhpBZO5jM/s1600/IMG_9651.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5eZ1PS4XxkHkDOex4ldsuZEUZa1osRimP07GZEhpMdR1MhDjy91q05U1-Pnh1rGn5SCla6esS6Jwv4EpqUoQX_mCl0v6PvTvsJC_p-ZsfK2fXwoS2mCOEWLvpCyr_aQjy-LAhpBZO5jM/s200/IMG_9651.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">he loves his finger! (all my awesome pics are on instagram but can't figure out how to get them on here yet)</td></tr>
</tbody></table>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com0tag:blogger.com,1999:blog-36335782951294349.post-87841569001217230822012-02-09T16:01:00.000-08:002012-02-09T16:01:44.034-08:00Bros be brosLast Friday went well. Edward and I got up super early and drove five hours and rolled into our appointment. They took xrays and Dr. Mosca told us that Edward needs to have a pretty rare surgery called a talectomy...they remove his talus bone. Then we drove home. Sweet long hours in the car.<br />
Surgery, as of now, is scheduled for March 1st. This will be a pretty involved surgery, his biggest yet.<br />
I took this video of my boys....you need to watch it to the end. Pretty typical of brothers/siblings or youngest to oldest behavior. It gave me validation with my siblings. hahaha<br />
<a href="http://vimeo.com/36496621">http://vimeo.com/36496621</a>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com3tag:blogger.com,1999:blog-36335782951294349.post-21217111457615629352012-01-27T16:54:00.000-08:002012-01-27T17:04:36.995-08:00Hurting heartsThis world we live in is so full of pain. This has been a tough week full of heartbreaking news. Sweet baby Kimber, who has Freeman Sheldon Syndrome, has cancer. Rhabdomyosarcoma it is called. There is an 85% success rate, which is good. She has to have six months of chemotherapy. And I got to meet her! Let me tell you, I loved her the INSTANT I laid eyes on her! She is just precious and looks exactly like Edward! Seriously, she is one tough cookie and I can't wait to see her again! Her mom was an inspiration to me!<br />
Today I found out that a high-school classmate of mine lost her baby at 34 weeks. I can't even imagine the pain she is feeling! My heart hurts soo sooo bad for her! UGH!<br />
Please, just pray for these families! Our struggles are nothing compared to others'. I need to always be thankful and pray for others. I get down with my stuff that I am going through, but really, I couldn't be more blessed. Speaking of my stuff...<br />
Thank you all for your prayers! Edward's MRI went well. Let me see...Dr. Mosca, Edward's feet/hip doc, said that his hips/pelvis are pretty board-like (flat). He showed me the MRI pictures of his hips and in one view they are flat, but in another, they show a little curve. So, when Edward has his feet surgery he will do an arthrogram of his hips. (They inject dye into the pelvis to see how much movement there is.) We will know more info then. In regards to his casting, Dr. Mosca doesn't think his feet will improve much more. Next Friday we go back and take xrays and probably schedule his surgery.<br />
To his spine, well, I have to find a spine expert. With Dr. Song gone, I have to figure out who will treat Edward's spine. The good news is, is that his spinal cord is in the right place!<br />
His brain...well, the focal encephalomalicia did not develop correctly. Exactly, I have no idea what that means. So, we have to be referred to a neurologist.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxkQtPmHq54qS0Y3asplGkpzkmAeCOH3rloevakUUUkiBP7Ev9aApFdd9no0o0hDOGUCSVGWM2bNyx7zYFzzdvz-PSdYHc3aS61F5QHtcFZNvEGbnxnG58Zy6QyFqsPME1vCY6f7bghgY/s1600/IMG_9245.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxkQtPmHq54qS0Y3asplGkpzkmAeCOH3rloevakUUUkiBP7Ev9aApFdd9no0o0hDOGUCSVGWM2bNyx7zYFzzdvz-PSdYHc3aS61F5QHtcFZNvEGbnxnG58Zy6QyFqsPME1vCY6f7bghgY/s200/IMG_9245.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I LOVE this picture..taken the beginning of December.</td></tr>
</tbody></table><div>Thank you guys so much for your prayers and continue to pray for these other families!<br />
<br />
<br />
</div>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-49362634941869312762012-01-23T16:02:00.000-08:002012-01-23T16:02:20.666-08:00PrayersI woke up this morning to some very upsetting news. A fellow Freeman Sheldon family recently found out that their daughter, Kimber who has FSS, has a tumor behind her right eye. They find out if it is cancerous tomorrow. That has made me soooo emotional all day. I can barely handle it, just too close to home. Please pray that she is ok and that her tumor is NOT cancerous!<br />
Tomorrow we drive to Seattle for Edward's MRI. I have had a terrible feeling about this MRI for a couple weeks now and the news this morning has not helped. Please pray that Edward and I will be safe driving and that his MRI results will be clear of any bad news. He also gets recast. It is all in the Lord's hands.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDMmrXT6HUwDWxS8Intz5E-JxMHXPzI9nMXeqkqSXLLh3kIbWKtI_DFrSl82o_jk8ogXin6n-LBKTShCwKgTKrTN_QLCYZD2QJ4fSntwaL3dQWJDVeSp3aeH2wqoItUL94ltcuwDse4bc/s1600/IMG_9617.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDMmrXT6HUwDWxS8Intz5E-JxMHXPzI9nMXeqkqSXLLh3kIbWKtI_DFrSl82o_jk8ogXin6n-LBKTShCwKgTKrTN_QLCYZD2QJ4fSntwaL3dQWJDVeSp3aeH2wqoItUL94ltcuwDse4bc/s200/IMG_9617.jpg" width="130" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">my baby as i speak</td></tr>
</tbody></table>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com1tag:blogger.com,1999:blog-36335782951294349.post-12323067111724601952012-01-12T13:16:00.000-08:002012-01-12T13:16:07.488-08:00Total randomsI seriously have the two biggest babies in the world. Unreal. OOO I can't see mommy so let's cry and whine for hours. My word.<br />
So for the next couple months I will be traveling to Seattle every week. Dr. Mosca wants to cast him before surgery. We don't have the surgery scheduled yet, it all depends on how Edward's feet respond to the casting. He is going to HATE it! I think I will hate it too.<br />
January 24th is when his MRI will be done. We had another eye appointment and the doc thinks he should have his brain scanned as well. Edward's eyes don't move out. So he thinks there is something off in his brain. (For the record, I don't think there is anything wrong aside from the fact that he has FSS, which is causing the lack of outward movement.) I seriously just have to think about today and not think about what is to come.<br />
You guys should see my stockpile, it is freaking awesome! It makes me happy.<br />
I need to clean but I just don't want to.<br />
Proverbs 10:22 says, "The blessing of the Lord makes a person rich, he adds no sorrow with it." I am puzzled by that. I guess I am not thinking in terms of money though.<br />
This was posted on Facebook yesterday and I really kinda like it. What do you think?<br />
<a href="http://www.youtube.com/watch?v=1IAhDGYlpqY">http://www.youtube.com/watch?v=1IAhDGYlpqY</a><br />
<br />
This is was interestingly sad/inspiring. Makes me rethink my sorrows.<br />
<a href="http://www.youtube.com/watch?v=rntM7oUeFAc">http://www.youtube.com/watch?v=rntM7oUeFAc</a><br />
<br />
Speaking of sorrows, it is funny how we measure other people pains by our own.<br />
I just want to eat a large piece of chocolate cake or perhaps the whole thing. Like the one from Costco. Oh my goodness, yummy deliciousness in my mouth. I wish it was in my mouth anyway.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVAlYleFe-3_kiCok3csbeom8G8A1WBtjv45auGvBmZR2ZJOzJVswvL3vImUZSIEasq7HdCQUhxX_Twb_-JrbTnIO1Miv2_fSrV0saXB6xmbSjnrVUDGF-VIxZW5PdGVtrmiIbaeL8070/s1600/IMG_9512.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVAlYleFe-3_kiCok3csbeom8G8A1WBtjv45auGvBmZR2ZJOzJVswvL3vImUZSIEasq7HdCQUhxX_Twb_-JrbTnIO1Miv2_fSrV0saXB6xmbSjnrVUDGF-VIxZW5PdGVtrmiIbaeL8070/s200/IMG_9512.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You guys should see his spine. It is getting worse! He can't hold his head straight because of it. Fricking spine.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKjOfW1OkNjrJlmyrJAUbiWLys7DLXz3fX-Rm2XUhoAiqiB668FTfHSHIediNCn1wwosN81QjSqzXoiszLRN60MRh1wHZYI4cRcpvdLI0u59KWaSonIAoxnGw41sbo08OuZsRb3eDxfNQ/s1600/IMG_9524.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKjOfW1OkNjrJlmyrJAUbiWLys7DLXz3fX-Rm2XUhoAiqiB668FTfHSHIediNCn1wwosN81QjSqzXoiszLRN60MRh1wHZYI4cRcpvdLI0u59KWaSonIAoxnGw41sbo08OuZsRb3eDxfNQ/s320/IMG_9524.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love this pic for some reason!!! My sweetie toot.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh7zf7yz9Uk3jYLjnA8rLhtvMIK7OUFLWxX3Cto9vc-2vby5gGftnwsmybsQfgfvKFVX7IYrFCYQWwmS2GDqZgVs2RUDBwj48IopysECpLT9RufchMtJgo19M528yPUrJlSM4del5rSqE/s1600/IMG_9527.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh7zf7yz9Uk3jYLjnA8rLhtvMIK7OUFLWxX3Cto9vc-2vby5gGftnwsmybsQfgfvKFVX7IYrFCYQWwmS2GDqZgVs2RUDBwj48IopysECpLT9RufchMtJgo19M528yPUrJlSM4del5rSqE/s200/IMG_9527.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Seriously?! What the crap do I do with his hair?! Cut or keep growing??</td></tr>
</tbody></table>Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com0tag:blogger.com,1999:blog-36335782951294349.post-74515606904594925692011-12-30T17:50:00.000-08:002011-12-30T18:32:51.065-08:00When it rains, it pours. Well, I can see clearly now the rain is gone! Cheesy, I know.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGJ0Z8JrOhR8Dpy3k8eLAbIHBbCKTbmhbnIsYmntHwhxaz59ShNjLK8u0UUUJvTJA98yfSkSIFkUpK3qoaikBhhjBmo0IYTHe50JfXigWvdYUoAMSHXbBZVxievO_iZIF-N0p9HFtgsOU/s1600/christmas+11.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGJ0Z8JrOhR8Dpy3k8eLAbIHBbCKTbmhbnIsYmntHwhxaz59ShNjLK8u0UUUJvTJA98yfSkSIFkUpK3qoaikBhhjBmo0IYTHe50JfXigWvdYUoAMSHXbBZVxievO_iZIF-N0p9HFtgsOU/s320/christmas+11.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas pic 2011</td></tr>
</tbody></table>I was really having a terrible time with myself this past month, month and a half. Just going in and out of pity parties and feeling bad about my situation. I think I was slowing down in my daily routine and I was scared to feel my hurt. I realized that I had been keeping myself super busy so I wouldn't feel the absolute heartbreak that I feel from time to time. (Just writing that makes me cry.) When I have time to think about the reality of my situation, my heart hurts, kinda like a bad breakup times a million. Then, Harv was watching a Veggie Tales movie and I had walked into the room during the 'lesson' part. Bob the Tomato was telling Larry the Cucumber that a thankful heart is a happy heart. hahaha That did it. Snapped me out of it! I have my days and my heart still severely hurts but with time it will heal. God is good and I am very thankful for my beautiful family.<br />
So I have been obsessed with couponing lately. I have become an addict who needs to get stuff on the freap. It keeps me busy.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9XTvLDgp9fuPzwz5huGt44UOtZM6g3L3Hubk0wPJuSo-RKSb5ax46wsK_juLABDEW8tlPIBpLfX4iwDQQeY5flQtd9HAMtH9D7UVrGydSpKGYPATwHMG1t1jGzLKXlEzF_VBdnpPFeJU/s1600/IMG_9419.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9XTvLDgp9fuPzwz5huGt44UOtZM6g3L3Hubk0wPJuSo-RKSb5ax46wsK_juLABDEW8tlPIBpLfX4iwDQQeY5flQtd9HAMtH9D7UVrGydSpKGYPATwHMG1t1jGzLKXlEzF_VBdnpPFeJU/s320/IMG_9419.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">love this one!</td></tr>
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdyT8S3rSn8sJrNIRBh8KzyuIeM-gSBzJm-5CX-6eR0HBVVhpDiGN5AXzwCMKqdCVe5OWHqF35q-X0mPs0S-2OKEYYlG9MzF2zIxLNk_OauePafLpzaCmTLilPdNUYoYA9_vF2IJI1wdA/s1600/IMG_9428.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdyT8S3rSn8sJrNIRBh8KzyuIeM-gSBzJm-5CX-6eR0HBVVhpDiGN5AXzwCMKqdCVe5OWHqF35q-X0mPs0S-2OKEYYlG9MzF2zIxLNk_OauePafLpzaCmTLilPdNUYoYA9_vF2IJI1wdA/s200/IMG_9428.jpg" width="133" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwROK3zrgCeAxGE8WQNnHU92MnC0KPIqd7kKQjoRFLbTKoDx9rN4KwygllM4CWadot8p7fhwFY0_NBFkuKWxnlap8xr21ZpQAQQdVf4W7jcQxVUOP-ISr-uvX5ay-TUP8eRHv4w3-hin0/s1600/IMG_9442.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="161" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwROK3zrgCeAxGE8WQNnHU92MnC0KPIqd7kKQjoRFLbTKoDx9rN4KwygllM4CWadot8p7fhwFY0_NBFkuKWxnlap8xr21ZpQAQQdVf4W7jcQxVUOP-ISr-uvX5ay-TUP8eRHv4w3-hin0/s200/IMG_9442.JPG" width="200" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFmNvM2ujd6UFYytZz50CcakEX_WAX62F0GdiHYowEYCeBeptLx66lldNpnrm3-WSR62iJ0N4eVLOdFBz1RtzuvbsjqKcqRUn03m_a8nIY75hp-wkiuco0Ao78Cl7-5t5E72pvowQffSU/s1600/IMG_9486.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFmNvM2ujd6UFYytZz50CcakEX_WAX62F0GdiHYowEYCeBeptLx66lldNpnrm3-WSR62iJ0N4eVLOdFBz1RtzuvbsjqKcqRUn03m_a8nIY75hp-wkiuco0Ao78Cl7-5t5E72pvowQffSU/s200/IMG_9486.JPG" width="200" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi10PYwCUPQlOaoxvDvO_o3uEAXDCfnnRW-fkBeOhZCPzqHEPvD179mdXacp6YeKjzut_HhqsiIKZBD4b3EYtL9gZBATBs0BI0zOw1AC7KeE70LCfh76IvC6uRFldXK2WWbI03TOtziawE/s1600/IMG_9501.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi10PYwCUPQlOaoxvDvO_o3uEAXDCfnnRW-fkBeOhZCPzqHEPvD179mdXacp6YeKjzut_HhqsiIKZBD4b3EYtL9gZBATBs0BI0zOw1AC7KeE70LCfh76IvC6uRFldXK2WWbI03TOtziawE/s320/IMG_9501.JPG" width="320" /></a></div>Get this. Just yesterday, I was seriously obsessing over how to get Edward an ipad. I was calling, asking around if anybody had any good ideas on how to get one on the cheap. That morning, I was reading Edward a daily devotion entitled "Grace-filled waiting." Trust God through your struggles and have faith that He will provide. My favorite verse was, "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17 Sidetracked, anyway, so while I was at physical therapy, asking my pt about the ipad, Adam calls me and says that his boss just bought him an ipad for Christmas! Are you kidding me?! Unreal how the Lord worked right before my eyes. What an absolute blessing! Adam was telling his boss how we were saving for an ipad because we thought that Edward would really benefit from some special needs apps on it. Then he went out on his lunch break and Adam finished with a patient and it was sitting on his desk! Isn't that crazy nice?!Janessahttp://www.blogger.com/profile/16847005798782227713noreply@blogger.com0