tag:blogger.com,1999:blog-37802558200079170762024-02-20T14:20:26.454-05:00Mighty Matthewnyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.comBlogger154125tag:blogger.com,1999:blog-3780255820007917076.post-81575387639514754402016-04-06T21:26:00.002-04:002016-04-06T21:26:48.793-04:00<span style="font-size: large;">Just a quick update . We will be traveling back to Boston next Thursday. Matthew will be admitted to MGH. He will be given IV fluids overnight and is scheduled for both a J-tube and G-tube change. He will also be having a quick sigmoidoscopy done to examine his rectum. He has been having the same type of lower abdominal pressure that he was having before his colon was removed. He has also been passing bloody mucus like stool almost daily. This shouldn't be happening without his colon. We had a stool test done last month and got the results back last week. The test was a Calprotectin test. It looks for inflammation within the bowels. The normal range would be anything less than 50. Matthew's came back extremely high at greater than 2500. This would explain why he feels the pressure. Again, he isn't complaining about it and says it doesn't hurt. His pain tolerance is definitely that of a Super Hero. </span><br />
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<a href="http://www.facebook.com/mightymatthewcech" rel="nofollow"><span style="font-size: large;">www.facebook.com/mightymatthewcech</span></a>nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-9935864473665952752015-11-19T13:58:00.001-05:002015-11-19T13:58:02.185-05:00A "Mighty" HeroMatthew just spend a very unexpected and long month in Boston. Which should have been a 2 day trip for some testing, ending up being 30 days. Matthew had emergency surgery to remove his colon and appendix. He had 8 sedated procedures and a few unexpected complications, but today he is home. This video is a glimpse into the obstacles that he faced and fought through. It's also to "Thank" all who have supported and helped our whole family through this pretty big bump in the road.<br /><br />
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<a href="https://animoto.com/play/YnMcz5yvZ8SoR3gBLS08Qg">A "Mighty" Hero</a>nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-55239556286253269342015-10-12T18:30:00.001-04:002015-10-12T18:30:55.852-04:00We will be traveling back to Boston later this week for the first of three trips in the next month. Matthew will be having his motility studies done on Friday. We will also be seeing a genetic counselor and then have our blood drawn for the Whole Exome Sequencing testing. This is a very expensive test that took us a long time to get approved by both the hospital and Matthew's insurance . We are glad that it's finally getting done.It's been almost 3 years. We are trying to also fit in an orthopedic clinic appointment while there. Matthew has been having increased foot pain in both feet now. He has been limping off an on daily. <br /><br /><br />The second trip will be on Matthew's Birthday in November. Matthew will be having a repeat gastric emptying test done. He is super happy that he will be eating radioactive oatmeal for the testing. He said its a great Birthday treat. Only Matthew would think that radioactive oatmeal sounds good. We will be staying through Saturday the 7th to see the Fenway Spartan Race. A team of "Mighty Matthews" will be participating in the race . It should be pretty cool to see . <br /><br />Our third trip is also in November. Matthew has some follow-up appointments with Cardiology, Metabolism, Complex Care and possibly Nephrology.<br /><br />I put together a new video and used it for Mito awareness week.<br /><br /><a href="https://youtu.be/9X84sXDQ22E" rel="" target="" title="Link: https://youtu.be/9X84sXDQ22E">https://youtu.be/9X84sXDQ22E</a><br /><br />Also, Matthew attended a family camp weekend a few weeks ago and performed in the talent show with his new freinds .<br /><br /><a href="https://youtu.be/f7hXNN-p8BE" title="Link: https://youtu.be/f7hXNN-p8BE">https://youtu.be/f7hXNN-p8BE</a><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-20825048613023382252015-05-26T09:40:00.002-04:002015-05-26T09:40:15.739-04:00<span style="color: blue; font-size: large;">Only 2 more days. Lets see how many votes Matthew can get. :) Just click the link below and click on the blue heart to vote . Thanks everyone </span><a href="http://bit.ly/1QNRuNW" title="Link: http://bit.ly/1QNRuNW"><span style="color: blue; font-size: large;">http://bit.ly/1QNRuNW</span></a><br />
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nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-28173841526544759642015-05-21T17:25:00.003-04:002015-05-21T17:27:57.115-04:00<a href="http://bit.ly/1QNRuNW"><span style="font-size: large;">http://bit.ly/1QNRuNW</span></a><br />
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<span style="font-size: large;">Matthew is one of only<span style="color: blue;"> 12</span> Semi finalists in a Disney Kids Remember video contest. The video with the most votes at the end of the 2 week period wins. The prize is a family trip back to Disney World. This would be so cool if Matthew could win. All you need to do is click on the link and go to the semi finalist gallery and click on “Prince Mighty Matthew’s” video. He is wearing a blue shirt and hat. Click the “Vote “ button on the bottom left of the video. You can vote once a day. Please share with friends and family. There are only<span style="color: red;"> 7</span> days left to vote. Thanks so much</span><div class="separator" style="clear: both; text-align: center;">
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<br />nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-23298211424152840752015-04-19T19:32:00.000-04:002015-04-19T19:32:02.164-04:00<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;">Spring has finally arrived here . The snow has melted and buds are on the trees. I would like it to be a little warmer, but its better than it was a few weeks ago. Matthew has been out a few times with the warmer weather. Spring is his favorite season. </span><br />
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<span style="font-size: large;">We were in Boston last Tuesday through Friday for Matthew's GI appointment and his tube change surgery. His GI appointment went <span class="spellchecker-word-highlight">ok</span> as far as his growth goes. He is now 10 <span class="spellchecker-word-highlight">1/2</span> yrs old, 46 inches tall and 40 pounds. :) He had an <span class="spellchecker-word-highlight">x-ray</span> of his abdomen which showed stool in his rectum. Although he has an <span class="spellchecker-word-highlight">ileostomy</span> , he should pass small amounts of stool normally every few weeks or so. We have been a little concerned since he has not passed any stool in over 6 months. He had a fecal impaction removed surgically at the beginning of October and has not pooped since. It looks like the stool is again collecting in his rectum. We will have to follow up with GI if he is not able to pass it using suppositories( they typically don't work on Matthew). </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA1hdCRbhcNRM0rjWfv_podtvmrnRMfzQMoOso40AlfcEoJX5certyVH1N-1fTlKQYetI8PziJkQfaUqdpKeVvoEJS1k_WF7BssFuLgDppobEOwwbEaykglK2stUiqrTij3Ue2-WpU_R4/s1600/11174816_10205549889964821_6416536817075127327_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA1hdCRbhcNRM0rjWfv_podtvmrnRMfzQMoOso40AlfcEoJX5certyVH1N-1fTlKQYetI8PziJkQfaUqdpKeVvoEJS1k_WF7BssFuLgDppobEOwwbEaykglK2stUiqrTij3Ue2-WpU_R4/s1600/11174816_10205549889964821_6416536817075127327_n.jpg" height="320" width="240" /></a><span style="font-size: large;">In true Matthew fashion there was a problem with the tube change. We spoke to the surgeon who said the tube change took longer than expected due to an issue with the tube. He said Matthew did well but the tube they were going to use tore while he was checking it. There is a metal piece that is used to flatten the tube when it gets inserted. The surgeon put the metal piece through the tube. Luckily he checked it beforehand, otherwise he could have put the metal piece through the intestine. Part of the delay was them trying to find another tube that was similar to the damaged one. They didn't have the one he was supposed to get so they were forced to insert a different brand. Matthew has used this brand before but it gave him problems with infections and granulation tissue growth. He's had the new tube for four days and he's already having issues with leakage from the stoma and skin irritation. Hopefully this will clear up but we will be contacting the surgeon's office to let them know what is going <span class="spellchecker-word-highlight">on.</span></span><br />
<span style="font-size: large;"><span class="spellchecker-word-highlight">We</span> go back to Boston in a couple of weeks to see Endocrine and <span class="spellchecker-word-highlight">Physiatry</span> (Rehab doctor). We'll be meeting with the Endocrine doctor to discuss some concerns we have with his glucose. We are hoping to allow him to eat some soft foods and clamp his <span class="spellchecker-word-highlight">G-tube</span>. In the past when we've done this his sugars get really high. We want to have a plan in place if we decide to do <span class="spellchecker-word-highlight">this.</span></span><br />
<span style="font-size: large;"><span class="spellchecker-word-highlight">Matthew</span> is going to be going to middle school in the fall and we will be meeting with the rehab doctor to see if there is some things we can do to help his endurance. We are looking at Matthew having a shortened school day. He will also continue to use his power chair to travel throughout the school like he does now. He will need to focus his energy on his academics since he will be switching classes, and will have more work to do. It's hard to believe that he is almost out of Elementary school.</span> nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com1tag:blogger.com,1999:blog-3780255820007917076.post-89809996095896100552015-03-16T19:43:00.002-04:002015-03-16T19:43:41.052-04:00<span style="color: blue; font-family: Georgia, "Times New Roman", serif; font-size: large;"></span><br />
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<span style="color: blue; font-family: Georgia, "Times New Roman", serif; font-size: large;">Another busy month has gone by. We are still waiting for some signs of Spring here in the North Country. Things are finally starting to thaw and hopefully SOON it will warm up. Matthew has been feeling ok other than a lingering cold and stuffy nose. It seems to have stuck around for most of the fall /winter. </span><br />
<span style="color: blue; font-family: Georgia, "Times New Roman", serif; font-size: large;">Tomorrow, he is having casts made for his new AFO legs braces. He picked out a pretty cool pattern for them and has his fingers crossed that Jeff (his orthotist) can order it. We will also be traveling back to Boston in April for more follow-up appointments. He will be seeing GI, Endocrine, Metabolism and a Rehab doctor. </span><br />
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<span style="color: blue; font-family: Georgia, "Times New Roman", serif; font-size: large;">Matthew sang and danced the night away this past Saturday. His favorite band , Glengarry Bhoys were in town. Sunday was spent resting and recharging. He says a day of rest is all worth it.</span><br />
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nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-12127299913690613652015-02-22T21:14:00.001-05:002015-02-22T21:14:19.789-05:00"I Lived"<a href="https://animoto.com/play/9vN1tGnsuWhHIRNeBnGB2w">"I Lived"</a>nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-49367345738776551772015-01-22T17:12:00.001-05:002015-01-22T17:12:01.187-05:00"You can come to me"<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/2DNv6-_fhOI" width="480"></iframe><br />nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-82935290190919015642014-12-30T11:19:00.002-05:002014-12-30T11:19:24.173-05:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnrpJX0GSkFAjxxVuy1rc4g6JuAreeERBZFyMOMdO7z8KrtlWAcHerW5IT_dieypWghFTFKc306wYm1VvLbw1_fn4ZuEc1vygM91nD1rjvtvr3aQtQ0ujldCFJIDuXlueiHpZPGhEsTls/s1600/IMG_6044.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnrpJX0GSkFAjxxVuy1rc4g6JuAreeERBZFyMOMdO7z8KrtlWAcHerW5IT_dieypWghFTFKc306wYm1VvLbw1_fn4ZuEc1vygM91nD1rjvtvr3aQtQ0ujldCFJIDuXlueiHpZPGhEsTls/s1600/IMG_6044.JPG" height="320" width="213" /></a><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">Happy Holidays to everyone. We had a busy but nice Christmas week with family and friends.</span><br />
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<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"> Matthew has not been feeling the best so far this week. His sodium was low again just before Christmas and has continued to be low. We tried to have his labs done on Sunday since his eyes were looking pretty sunken in, </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiom2vMjtJWZDbTvW4AV5-mUe68QJczRqoN_erlPN4fG-j9LJM5qv8V8-TjV141a0nfxDgdP9OPCRmh0F7YWgFT7m-C6_5egNpM5xclJYoG6HFlweLZUNj4z87_N0xV0Fv_WxReG01fip0/s1600/IMG_7523.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiom2vMjtJWZDbTvW4AV5-mUe68QJczRqoN_erlPN4fG-j9LJM5qv8V8-TjV141a0nfxDgdP9OPCRmh0F7YWgFT7m-C6_5egNpM5xclJYoG6HFlweLZUNj4z87_N0xV0Fv_WxReG01fip0/s1600/IMG_7523.jpg" height="320" width="240" /></a><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"></span><br />
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<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"> increased output and a belly ache, but they were not able to get any blood. We ran half pedialyte /half formula over night on Sunday and had his labd redrawn yesterday . His sodium was still low along with a low Chloride level. We spoke to his doctors and we came up with a plan to continue the pedialyte/formula again overnight and see how he does. So far this morning he is looking much better. He still has a belly ache, but he looks more hydrated. We will try to decrease the pedialyte and increase his formula back and see how he tolerates it. If he gets worse or looks more dehydrated, we will probably have to get some IV fluids to re-balance his system. </span><br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">On a more positive note, Matthew had his ear appointment yesterday .His ears look great and his hearing is perfect :) Today , he also has his first Orthodontist appointment. We know he will need braces but checking to see if he is ready for them.</span><br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">Thanks to everyone who has sent Matthew Happy Mail and holiday greetings. Matthew loves reading the post cards, cards and letters from all over the world.</span><div class="separator" style="clear: both; text-align: center;">
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_SqGcI8t5blfcVoKwk0rgmiyTGNN0YBJFPDnDjq1elAgPdyqXmFBdPe8PC2MzJ5y1TJvrD52jPHEMoI5SELmWI4ZmQlopi99Q-a2fsyiQgdBLb-Jgrb2Uyedplctq9erQN2TqNzrW2UI/s1600/IMG_6140.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_SqGcI8t5blfcVoKwk0rgmiyTGNN0YBJFPDnDjq1elAgPdyqXmFBdPe8PC2MzJ5y1TJvrD52jPHEMoI5SELmWI4ZmQlopi99Q-a2fsyiQgdBLb-Jgrb2Uyedplctq9erQN2TqNzrW2UI/s1600/IMG_6140.JPG" height="213" width="320" /></a></span></div>
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<br />nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-68509850166042876092014-11-16T19:33:00.002-05:002014-11-16T19:33:59.395-05:00<span style="color: #6aa84f; font-size: large;">We are home from Boston. It was a long but pretty productive week mixed with some fun.</span><div class="separator" style="clear: both; text-align: center;">
<span style="color: #6aa84f; font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWWaYUcmBTKvyuofH-aq2rV5Og93ePFySYgnnG-ZHJ5KAXoBKRfuMUXunMTyRYDIZh7BcsfKmD5SWXwdvC3r47Zpy5TNmkY-L2qcA5Vo6kYXy9WW_4wRRKRmWnYQVoJeyrgR8rtNAPZfc/s1600/IMG_6561.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWWaYUcmBTKvyuofH-aq2rV5Og93ePFySYgnnG-ZHJ5KAXoBKRfuMUXunMTyRYDIZh7BcsfKmD5SWXwdvC3r47Zpy5TNmkY-L2qcA5Vo6kYXy9WW_4wRRKRmWnYQVoJeyrgR8rtNAPZfc/s1600/IMG_6561.JPG" height="320" width="320" /></a></span></div>
<span style="color: #6aa84f; font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfHNqznSW9iROfetzMnuBv1CpgKWOZEeeMA7Ts4NQZKicS-pzFFcqM6fsEMIVoE-JoccmYyWRa0amJFeXZgkBFsfveetV7bMDddpO_w5di0GAMdcug5UbSU1-IHWpgTikAVqf0SJ7aGq0/s1600/IMG_5130.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfHNqznSW9iROfetzMnuBv1CpgKWOZEeeMA7Ts4NQZKicS-pzFFcqM6fsEMIVoE-JoccmYyWRa0amJFeXZgkBFsfveetV7bMDddpO_w5di0GAMdcug5UbSU1-IHWpgTikAVqf0SJ7aGq0/s1600/IMG_5130.JPG" height="320" width="253" /></a> </span><br />
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<span style="color: #6aa84f; font-size: large;">First the medical update and then the fun stuff.</span><br />
<span style="font-size: large;"><span style="color: #6aa84f;"><strong>Complex Care</strong>- appointment went well. Matthew was 38 1/2 pounds , and 45 3/4 inches tall. Matthew will be getting referred to physiatrist to assist with strengthening his muscles to possible help increase his endurance. Since our Mito doctor has left Boston, they have agreed to help us with school and insurance letters.</span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvd1DR93BUmH-7JriHcv75XyGJYceQHRB2ZNNcNuFM-JLvqaJDy0v9eEl0M7OTgW0np7s_7eU70bxMlgXn30FBgbOFoGb03_qWLPL60FS78X5v3s0eV31xin52P6Z5zRxV_7BLjir3Wt0/s1600/IMG_6562.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvd1DR93BUmH-7JriHcv75XyGJYceQHRB2ZNNcNuFM-JLvqaJDy0v9eEl0M7OTgW0np7s_7eU70bxMlgXn30FBgbOFoGb03_qWLPL60FS78X5v3s0eV31xin52P6Z5zRxV_7BLjir3Wt0/s1600/IMG_6562.JPG" height="320" width="240" /></a><span style="font-size: large;"><span style="color: #6aa84f;"><strong>GI- </strong>This was a follow up to his fecal impaction from a few weeks ago. Overall the doctor is pleased with how Matthew is doing. He continues to very slowly gain weight and grow taller. He would like to see more growth but he is happy that Matthew's growth charts are following a nice curve and Matthew hasn't lost weight or plateaued like he has in the past. We talked about ways to prevent future impactions, two being enemas or physical therapy. We did find out that there are some new supplements similar to the Polycose that Matthew was on before. Polycose had been discontinued and we were given samples of 2 different brands to try and see if Matthew can tolerate them. This allows us, if Matthew tolerates it, to add more calories to his feeds without increasing the rate or volume.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjejeyiTpGjYbkU21DDaQt09KLLYvGtBRet3TLnf-yRoUGtKX_Ogh0reO0-aEMNfjonQW7Y3m32-OWe3eISj2kTFxb03ef5OpHNVEHY19M-wakDYzEq5AiQ9zQr7WMw4jTTJCBHVuNMic/s1600/IMG_6633.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjejeyiTpGjYbkU21DDaQt09KLLYvGtBRet3TLnf-yRoUGtKX_Ogh0reO0-aEMNfjonQW7Y3m32-OWe3eISj2kTFxb03ef5OpHNVEHY19M-wakDYzEq5AiQ9zQr7WMw4jTTJCBHVuNMic/s1600/IMG_6633.JPG" height="320" width="320" /></a></div>
<span style="font-size: large;"><span style="color: #6aa84f;"><strong>Metabolism - <em></em></strong><em></em> Matthew's doctor also agreed to help with school and insurance letters. The main focus of the visit was on the testing Matthew had done for OPA1 which the doctor thought might be the genetic reason for Matthew's Mitochondrial Disease. The testing came back ok showing he didn't have this. The doctor ordered the Gene Exome testing for Matthew which tests over 22,000 genes. We had been part of a research study which our entire family had been tested but we never received results. The doctor hadn't received them either and since the test is now available commercially he wants it done. Matthew had the labs drawn and we are waiting to hear if the rest of us need to be tested.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguuxU7bnK4ks-n-L5IkZthxE3ynVMdVSD-1jFtQ7fF3cUg7H9eI_hwk0h_Y0p3Fr-axnC-S5I4SK4e8gzO6VkLSnF8j2LGO8RPN24D3lShW7pnSDnFvPkVgpOc8qlsfPElX6tcBxaA0xw/s1600/IMG_6634.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguuxU7bnK4ks-n-L5IkZthxE3ynVMdVSD-1jFtQ7fF3cUg7H9eI_hwk0h_Y0p3Fr-axnC-S5I4SK4e8gzO6VkLSnF8j2LGO8RPN24D3lShW7pnSDnFvPkVgpOc8qlsfPElX6tcBxaA0xw/s1600/IMG_6634.JPG" height="320" width="240" /></a></div>
<span style="font-size: large;"><span style="color: #6aa84f;"><strong>Cardiology - </strong>Matthew had an Echo and EKG done and saw the doctor. The Echo and EKG were normal and we discussed some issues Matthew has been having with chest cramping and palpitations. She didn't think there was anything to worry about, but she is ordering a 24 hour monitor just to be on the safe side.</span></span><br />
<span style="font-size: large;"><span style="color: #6aa84f;"><strong>Orthopedics - </strong>The easiest appointment we have but one of the most frustrating because they are always way behind (this time 1 1/2 hours). Everything looks good, Matthew only has to wear his AFO's when he is going be active for a long time (gym, recess, walks). His current ones still fit but we have to get them adjusted since he has developed a bony growth "pump bumps" on both ankles.</span></span><br />
<span style="color: #6aa84f; font-size: large;">Matthew has started a new medicine prescribed by his <strong>Nephrologist</strong>, sodium chloride, which is salt water. He has been having problems with low sodium and chloride recently. His doctor is hoping that this will correct these issues and also force his body to hold onto more fluid which would help with his chronically dehydrated state. If it works we might be able to<strong> </strong>decrease his potassium supplement and in turn improve his motility and his absorption of calories. </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimHVf46btivhOAkJxI3S-MDbF39M8L5Qw5wKDPKIPsmFe4axeaIB6WqkFn7H1bM-9X_n3gPf_qxTO18TkEcFhN9-IBqKUT36d4nLy7PhfXoToYNqmfnh248aaozhTKno_mJKtYHM37rzk/s1600/IMG_6814.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimHVf46btivhOAkJxI3S-MDbF39M8L5Qw5wKDPKIPsmFe4axeaIB6WqkFn7H1bM-9X_n3gPf_qxTO18TkEcFhN9-IBqKUT36d4nLy7PhfXoToYNqmfnh248aaozhTKno_mJKtYHM37rzk/s1600/IMG_6814.JPG" height="320" width="213" /></a><span style="font-size: large;"><span style="color: #6aa84f;"><strong>Dentist- </strong>Matthew had his two incisors removed yesterday. His mouth is small and there is no room for his adult teeth to come in. He has had 9 out 12 baby teeth removed the past year and a half by his dentist. </span></span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVTDz4ccSBHp7O35gNx8mdfcjTgrugxTITV38_tt0ANeiUQG_20sBgpejIshC4ejKFNQbqaTiSwJpty8j6_qsiRnuCmSB3PmVOpLFeWs4FzwHR5Kf2hfnpwq5NaejLdbKNjrg-8lCFatk/s1600/IMG_6551.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVTDz4ccSBHp7O35gNx8mdfcjTgrugxTITV38_tt0ANeiUQG_20sBgpejIshC4ejKFNQbqaTiSwJpty8j6_qsiRnuCmSB3PmVOpLFeWs4FzwHR5Kf2hfnpwq5NaejLdbKNjrg-8lCFatk/s1600/IMG_6551.JPG" height="320" width="320" /></a><span style="font-size: large;"><br /><span style="color: #6aa84f;"></span></span><br />
<span style="font-size: large;"><span style="color: #6aa84f;">Now for the <strong>fun stuff !</strong></span></span><br />
<span style="color: #6aa84f; font-size: large;">-We visited Hilliards House of candy when we first got to Boston. This is Matthew's favorite candy store and the only candy store that makes Rose Mints that Matthew can eat :)</span><br />
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<span style="color: #6aa84f; font-size: large;">- We were able to visit the Stone Zoo where Matthew was able to see a real Tree Kangaroo named Kakota. Tree Kangaroos have been Matthew's new favorite animal since he read about them last month in school .We practically had the zoo to ourselves since its almost winter and it was a school day when we were there. </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ5f_jZcEEpWAv63oD3ocBRpIX5DS7WhHf1caTH5Xe8JJb4womkEQY7iMUqEIEp6yi4USqGezSQLvlKCWrG43PrBilmAi3K6m4nGUWnfY3fg1eJxxHKqQAWPbL49l7N07lLfafxItHUvU/s1600/IMG_5124.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ5f_jZcEEpWAv63oD3ocBRpIX5DS7WhHf1caTH5Xe8JJb4womkEQY7iMUqEIEp6yi4USqGezSQLvlKCWrG43PrBilmAi3K6m4nGUWnfY3fg1eJxxHKqQAWPbL49l7N07lLfafxItHUvU/s1600/IMG_5124.JPG" height="213" width="320" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDCUAVJA23F1jX6kBTc-pijsZ38bkgx1cvgezivZ-WUrHWcFzcaqEhR0MxhKC9g98-kUJQj4T8_9Y22LEU4IH6aNzSeeDne1Csfm6vXHCu4LrzsroBSO78bWZqVrriy-uLTBNoHJuok5I/s1600/IMG_5131.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDCUAVJA23F1jX6kBTc-pijsZ38bkgx1cvgezivZ-WUrHWcFzcaqEhR0MxhKC9g98-kUJQj4T8_9Y22LEU4IH6aNzSeeDne1Csfm6vXHCu4LrzsroBSO78bWZqVrriy-uLTBNoHJuok5I/s1600/IMG_5131.JPG" height="213" width="320" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg10R3C-3dKyn6S7_8IWjpjosE7BTrAV2OawEjgaMUlXMSO4IkvDupMESGLILcSMueXbetAxmX5Y5B_ojw8VP8rDog4u5QGLZeyY0w23fZYc_b3jXuMIpBnOCCYDLVR4oUbzOnICMmTXvY/s1600/IMG_6647.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg10R3C-3dKyn6S7_8IWjpjosE7BTrAV2OawEjgaMUlXMSO4IkvDupMESGLILcSMueXbetAxmX5Y5B_ojw8VP8rDog4u5QGLZeyY0w23fZYc_b3jXuMIpBnOCCYDLVR4oUbzOnICMmTXvY/s1600/IMG_6647.JPG" height="320" width="240" /></a><span style="color: #6aa84f; font-size: large;">- Matthew was able to eat a small sliver of his Icing Smiles cake that was delivered to the Yawkey Family Inn where we were staying. The baker, Stephanie was super nice and the cake was great. Matthew ended up having a big upset stomach after he ate it, but he said it was worth it just to taste real food. I was able to vent most of it back out through his G-tube and he felt much better .</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitDue5__oZ4Ng_KeJHllUO9cETJPOvcbpe5gtjDAZ4xLz9Vrz-iFm4EzMh54O0k762Ge4iwWe5q_l8ehjx2ua5UdYjBh7GfI-thD1O1RtgmKbMTlHFQbE12y2Rit415YslVGxBOF2uOEQ/s1600/IMG_6609.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitDue5__oZ4Ng_KeJHllUO9cETJPOvcbpe5gtjDAZ4xLz9Vrz-iFm4EzMh54O0k762Ge4iwWe5q_l8ehjx2ua5UdYjBh7GfI-thD1O1RtgmKbMTlHFQbE12y2Rit415YslVGxBOF2uOEQ/s1600/IMG_6609.JPG" height="320" width="240" /></a><span style="color: #6aa84f; font-size: large;">-We visited Sarah at MIT. She took Matthew up to see the Shutter Lab. Matthew loved it and had a great time. Its always a fun time when we see Sarah.</span><br />
<span style="color: #6aa84f; font-size: large;">-The new Seacrest Studios opened up on Friday. We were caught up in Matthew's last appointment and missed seeing Ryan Seacrest and Usher, but Matthew was able to be a guest in the studio. He was on air and televised for about 45 minutes and was not shy at all. That kid is made for entertainment. He loved every minute of it.</span> <br />
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nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-49463450076691416812014-11-10T21:38:00.002-05:002014-11-10T21:38:33.453-05:00<span style="background-color: white; color: blue; font-size: large;"></span><br />
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<span style="background-color: white; color: blue; font-size: large;">Matthew had a wonderful Birthday weekend. Members from SUNY Plattsburgh Baseball team stopped over on Thursday night to wish him a Happy 10th Birthday. They stayed and visited for awhile and even had a mini dance off. We had a small family party on Saturday and Matthew took a few of his friends to see Big Hero 6 on Sunday. He loved the movie and now is interested in trying to build his very own robot. :) </span><br />
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<span style="background-color: white; color: blue; font-size: large;">We leave for Boston in the morning. Matthew has his routine appointments and testing through Friday. Friday afternoon we will be driving to Albany for the night and then off to Glens Falls Saturday morning. Matthew will be having his two incisors removed by his dentist. He needs some room for his adult teeth to come in.</span></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzEFldGNWpLR1eVsLUC8RSPg9_VTo_JiM9Ev5myaRKO2LtOOsl5VHYZ06IUpEzZYKeW3jHE_fuaW9Pp18x8J8vy_k-i4SIrSnxTJB1QQQ5JW4pY6hiJF-p2dRD-r-t2g4rMKqXLofBb18/s1600/IMG_4923.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzEFldGNWpLR1eVsLUC8RSPg9_VTo_JiM9Ev5myaRKO2LtOOsl5VHYZ06IUpEzZYKeW3jHE_fuaW9Pp18x8J8vy_k-i4SIrSnxTJB1QQQ5JW4pY6hiJF-p2dRD-r-t2g4rMKqXLofBb18/s1600/IMG_4923.JPG" height="320" width="213" /></a><span style="background-color: white; color: blue; font-size: large;"> Its going to be a busy week medically but we are trying hard to fit some fun things in while we are there. Matthew will have an Icing Smiles Cake on Thursday. This will be a "Matthew Friendly" cake that he will be able to taste and maybe eat a small piece. We are also going to the Stone Zoo to see a Tree Kangaroo. Matthew has been reading about Tree kangaroos and wanted one for his Birthday. We found out that they have one at The Stone Zoo which is only 9 miles from where we are staying. Since its not possible to actually own one, he will at least be able to see a real live one at the zoo. :) He is super excited.</span> <br />
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<span style="color: #6aa84f; font-size: large;">It's been a roller-coaster kind of week. We left for Boston last Friday. Saturday, we had a wonderful time at the Binkeez/Peaches Neet Feet Superhero party and then dinner with family and friends. The MitoAction walk was on Sunday and it was a beautiful, chilly but sunny day. They had a great turnout and everyone had fun. We stayed in Boston through Tuesday for a few appointments and tests . Below is a summary of how the appointments went.</span><br />
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<span style="color: #6aa84f; font-size: large;">1) Dr. F(renal) had talked to us about adding sodium to Matthew’s regimen but wanted to wait until we saw the other providers before doing so.</span></div>
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<span style="color: #6aa84f; font-size: large;">2) Matthew had an Uroflow test and Kidney/Bladder ultrasound done and then saw Dr. E. He said both tests looked pretty good. His bladder doesn't squeeze very strong but, he said he is able to empty it completely . It just takes a little longer to do so. His only concern was Matthew was not peeing enough during the day. He wants us to make him try and go more even if he doesn't void</span></div>
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<span style="color: #6aa84f; font-size: large;">) The contrast enema was ordered because Matthew has been complaining of lower abdominal pressure and that he always feels like he has to “poop”. He will sit on the toilet sometimes as long as 2 hours. According to the MGH radiologist and Dr. BG there is a fist sized/baseball sized mass in Matthew’s colon near his rectum. They believe it is either a mucus plug or impacted stool . One of the GI Fellows at MGH tried to manually remove it but was unsuccessful. Dr. BG is scheduling a procedure with sedation to remove the mass.</span></div>
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<span style="color: #6aa84f; font-size: large;">Matthew missed school Mon-Thurs , but was able to go back today . He will be missing more school next week when we go back to Boston.</span></div>
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<span style="color: #6aa84f; font-size: large;">This weekend we are going to try and relax and not think too much about the busy week ahead. We will also be going to Potsdam tomorrow to visit Bradley at college for Family weekend.</span></div>
nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-92073136964759783292014-09-07T22:24:00.001-04:002014-09-07T22:32:45.255-04:00Mighty Matthew <span style="font-size: large;">Click the link below for Matthew's new video</span><br />
<a href="http://animoto.com/play/Wes3j20EecMuNJ5KBOXtsQ">Mighty Matthew</a>nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-13793406134534738082014-07-30T11:40:00.004-04:002014-07-30T11:40:49.065-04:00<div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9XWQgAQVIKZWbjMFFNoeg9IM7BjTLuVEkXpJhxv1UY7MDcsaTx8fCig74f94EywSdzaXct8pBLCcFGbadR1wQU1bIjAObXLqEipSV1QoumNMZRDEHyu7gRoy1BhdPwVz1pGr8jJjfwkM/s1600/IMG_3834.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9XWQgAQVIKZWbjMFFNoeg9IM7BjTLuVEkXpJhxv1UY7MDcsaTx8fCig74f94EywSdzaXct8pBLCcFGbadR1wQU1bIjAObXLqEipSV1QoumNMZRDEHyu7gRoy1BhdPwVz1pGr8jJjfwkM/s1600/IMG_3834.JPG" height="242" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRTlxWVuN65Xcb2TPn4uxENmoOgkml5fk6P7GuFR2gtkD8Oe4ORR7QTAJyWQxmHpv5zA5ePswDSIaIXny0tHPRNnLyXgQs2P022aYWotsyPwzZCNOfpUm-nZzL7Zb1SsTtVmGOa0lO6So/s1600/IMG_9363.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRTlxWVuN65Xcb2TPn4uxENmoOgkml5fk6P7GuFR2gtkD8Oe4ORR7QTAJyWQxmHpv5zA5ePswDSIaIXny0tHPRNnLyXgQs2P022aYWotsyPwzZCNOfpUm-nZzL7Zb1SsTtVmGOa0lO6So/s1600/IMG_9363.JPG" height="320" width="213" /></a><span style="color: blue; font-size: large;">I can not believe it's almost August already. The summer is flying by. Matthew loves his new adaptive bike. He has also been back in the pool and relearning how to swim a bit. He is able to swim underwater about 6 feet back to the ladder. He enjoyed camping even though he came back home at night. It was easier to do his meds etc at home. A good share of his summer days in between outings has been spent relaxing on the couch with his ipad and beanie babies.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0g0AKMQd6uqL3HzLI5DJfxXUAyLSxxIQeOAcbB7cDiV8MxCkJ4YWa08HVlMO_OmbAgkuSXP7JrQrvmDsLfjQk-aQo_zONjjTMg_RTl-1AptYZM9AAlH_1LctLxzLubZIv7M0rL77OxbY/s1600/IMG_3895.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0g0AKMQd6uqL3HzLI5DJfxXUAyLSxxIQeOAcbB7cDiV8MxCkJ4YWa08HVlMO_OmbAgkuSXP7JrQrvmDsLfjQk-aQo_zONjjTMg_RTl-1AptYZM9AAlH_1LctLxzLubZIv7M0rL77OxbY/s1600/IMG_3895.JPG" height="213" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1oNJLgpDoPZUqZGxJRiT09CXmOUr82LdyCnZp6tjR8LdNWOj1Oi_8nSvpS8pakMKzONWJpe-F75dTuNtxJdsRkWmAPCz9LLtxvmmTAFcKLb4iBuPxelQFTsZmvGjw5UznaHpxLrURBPE/s1600/IMG_3898.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1oNJLgpDoPZUqZGxJRiT09CXmOUr82LdyCnZp6tjR8LdNWOj1Oi_8nSvpS8pakMKzONWJpe-F75dTuNtxJdsRkWmAPCz9LLtxvmmTAFcKLb4iBuPxelQFTsZmvGjw5UznaHpxLrURBPE/s1600/IMG_3898.JPG" height="213" width="320" /></a><span style="color: blue; font-size: large;">Matthew had allergy testing done last week . He was tested for environmental things like trees, grass, dogs, cats etc and he did not show an allergy to any of them . He was also retested for eggs and nuts since he had an allergic reaction a few years ago from cracking the shells of some mixed nuts during the holidays. We were never sure what nut caused the reaction. Well, he still shows an allergy to eggs but he reacted to the nuts more. Within 5 minutes, the skin test marks were big hives and after 10 minutes , the hives started to blend into each other and he also started to get hives on other parts of his arm. They concluded that he reacted to all tree nuts, peanuts and coconut. He was very itchy and said the hives hurt when he touched them. They eventually started to go away and after two days , they were gone. </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4bYDK1dIyUSIiwD9qF2HHuJTswM-OBoSXP_UjgOdP7EsGnwd4lmE4vZaQlNRmFmjFo1YC6Y_8BZtgWbpAGI4PVebodB9tFQMW9x1pL5w8_J1ST-ceK_Wt6PA9x2k-nLobzBdFYaO8w1c/s1600/IMG_9346.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4bYDK1dIyUSIiwD9qF2HHuJTswM-OBoSXP_UjgOdP7EsGnwd4lmE4vZaQlNRmFmjFo1YC6Y_8BZtgWbpAGI4PVebodB9tFQMW9x1pL5w8_J1ST-ceK_Wt6PA9x2k-nLobzBdFYaO8w1c/s1600/IMG_9346.JPG" height="320" width="317" /></a><span style="color: blue; font-size: large;">Tomorrow , Matthew is having a Gastric Emptying Scan done at our local hospital. His last scan was over 4 years ago . Matthew so desperately wants to be able to eat solid food even if just a few tiny bites. This test will give us a little more updated information about how well if anything his stomach empties food. He is super excited to be allowed to eat oatmeal tomorrow for the test even knowing that it is probably going to cause stomach pain. We will not be able to vent his stomach at all until the test is complete. This usually is at least 4 hours long. </span><br />
<span style="color: blue; font-size: large;">We will also be going to Boston on August 13. It will be a short stay for just a few appointments. He will have more appointments in September and again in December.</span><br />
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nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-21094609830114755822014-07-03T16:43:00.000-04:002014-07-03T16:44:02.090-04:00<div class="separator" style="clear: both; text-align: center;">
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<strong>It was a crazy busy month of June. Our oldest son Bradley, graduated from High School. He is off to Suny Potsdam in August with a full scholarship . He will not have to take out any loans or pay anything out of pocket. His education will be covered 100% including his dorm room and meals. We are very proud of all of his hard work . Steven will be going into 10th grade and Matthew in 5th. On the last day of School Matthew rode home in style. Our friends from the Essex County Sheriff's Department picked Matthew up in a Humvee . :) Matthew though it was the coolest ride home. :)</strong><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidmpheHlqKHGzzjnBzkYPorxnv0023ZbJhc73ucP7MAV3KC_kwyG8Zu0IPJ3k-mxs7ZEh7rEyv1T2pEdqw2QKx1KAwae_OXSbp2AxtDCtP3CUG_hVjV709imwXYeJwClsfl0RVD2GKeAE/s1600/IMG_3477.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidmpheHlqKHGzzjnBzkYPorxnv0023ZbJhc73ucP7MAV3KC_kwyG8Zu0IPJ3k-mxs7ZEh7rEyv1T2pEdqw2QKx1KAwae_OXSbp2AxtDCtP3CUG_hVjV709imwXYeJwClsfl0RVD2GKeAE/s1600/IMG_3477.JPG" height="199" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOHKOWsDAtlJjE5Bm7NFTcTEGjjDsq2ffPk-Qg-2PdnS0G0e1Vj9daBjT9InzTdUaRTRyEgUBBeEcmyAw5L1BxLNosb6NFvWOrXAeS4h2Ubw_xf5vQQCN2eqq5rmgStS-pXLjfYhaDDCU/s1600/IMG_3486.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOHKOWsDAtlJjE5Bm7NFTcTEGjjDsq2ffPk-Qg-2PdnS0G0e1Vj9daBjT9InzTdUaRTRyEgUBBeEcmyAw5L1BxLNosb6NFvWOrXAeS4h2Ubw_xf5vQQCN2eqq5rmgStS-pXLjfYhaDDCU/s1600/IMG_3486.JPG" height="213" width="320" /></a><strong>Matthew is enjoying the first week of summer break. The weather here has been super hot and humid (I love it) , so Matthew has been relaxing in the pool and sitting by the fans. He was swimming a little bit last year , but can not swim yet this year. I tried a few times with him , but he can't keep his head up out of the water. </strong><br />
<strong>On Saturday Matthew will be receiving a new bright green "Mighty Matthew" adaptive bike from Preston's March for Energy. We will be meeting Preston and his family so they can present him with his bike. Matthew has tried for years to ride regular tricycles , but he never gets more than a 100 feet before he can no longer pedal it. This bike will have a pulley system that should allow him to use less energy and to ride with his friends. Our friends from Goss Dodge Chrysler will also be</strong><strong> there to see Matthew receive his bike. </strong><br />
<strong>On a medical note, Matthew's labs have been off more than his usual the past month. His sodium which is always low , has been even lower. A few weeks ago it was 130. He also was treated for a J tube and G tube infection. They were pretty nasty looking and building up quite a bit of bleeding granulation tissue. His J tube looks much better, but the G tube still has some healing to do.</strong><br />
<strong>A few weeks ago, Matthew was complaining of increased hunger. He was sneaking foods and drinks and then telling us, so we could syringe the food back out through his G tube. I was also called two days in a row at work while he was in school. He was caught twice eating food out of the garbage. As much as we wanted to be angry with him, its too hard when he cries and says he is so hungry. He tells us that his brain knows what the food will do to his stomach , but its his heart that tells him to take it. </strong><br />
<strong>We contacted his GI doctor and with his approval, stopped giving him his Ciproheptadine. One of the side effects of this med is increased hunger. This medication is also used to dull stomach pain . The hunger issue seems to be better now that he is off of it, but he now has stomach pains and pressure and is complaining of increased thirst. We spoke to his GI doctor once again and he started Matthew on Gabapentin. He started him on a low dose and will increase depending on how handles it. So far , Matthew's only side effects from it are headaches. Since its only been two days , we are hoping the headaches stop as he gets used to the med. </strong><br />
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<br />nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-68516654273614007792014-06-02T22:28:00.003-04:002014-06-02T23:02:49.523-04:00<span style="font-size: large;"><span style="font-family: Georgia, "Times New Roman", serif;"><span style="color: white;"><span style="background-color: white;"></span></span></span></span><div class="separator" style="clear: both; text-align: center;">
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Nice weather has finally reached us here in NY. Matthew has been able to go outside the past few weeks. Spring is his</span></span></span><span style="background-color: white; color: black; font-size: large;">favorite time of year. With the exception of today, the temperatures have been perfect .Less than a month of school left before Matthew is on Summer vacation and finished with <span class="spellchecker-word-highlight">4th</span> grade. Soon, most days will be too hot for Matthew to enjoy much time outside. His portable fan and cooling vest will be his best friends. Hopefully he will go swimming in our pool more than a few times. I am sure his friend Ava can convince him to go <span class="spellchecker-word-highlight">swimming.</span><br />
</span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC8P0Na1qvEBlHKA-b1RT42PJ4Vc8nuYiqRBIoh_SA4KyRcZqN7n7bkNM_i3Mbt0F7RUK6V8Uyy4iqx3lJqKcLzrgroGY_nMu30DFC36nuD_cLp22Vzd12EASdb-koi_jEV24UUXEovPY/s1600/IMG_3190.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="background-color: white; color: black; font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC8P0Na1qvEBlHKA-b1RT42PJ4Vc8nuYiqRBIoh_SA4KyRcZqN7n7bkNM_i3Mbt0F7RUK6V8Uyy4iqx3lJqKcLzrgroGY_nMu30DFC36nuD_cLp22Vzd12EASdb-koi_jEV24UUXEovPY/s1600/IMG_3190.JPG" height="320" width="319" /></span></a><span style="font-size: large;"><span style="color: black;"><span style="background-color: white;"><span class="spellchecker-word-highlight">We</span> have had a busy month. Our oldest son Bradley and our niece will be graduating High School in a few weeks. We've been working hard to get the house fixed up as we're having the party here. Fingers crossed that the weather will be nice as we are planning for an outdoor <span class="spellchecker-word-highlight">party.</span></span></span><br />
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<span style="color: black;"><span style="background-color: white;"><span class="spellchecker-word-highlight">We</span> had a friend of ours raise money to help us with our medical and travel expenses for Matthew. She suffered a spinal cord stroke in her twenties and uses arm crutches to get around. She decided to run, yes run, a marathon to honor Matthew. She says Matthew is her hero and looks up to him for inspiration. On Sunday May <span class="spellchecker-word-highlight">25th</span> she did the Vermont City Marathon going the whole <span class="spellchecker-word-highlight">26.2</span> miles using her arm crutches. She had Matthew and her son meet her a few hundred feet from the finish line and they all crossed together. It was an amazing sight to <span class="spellchecker-word-highlight">see.</span></span><br />
<span style="background-color: white;"><span class="spellchecker-word-highlight">Matthew</span> is still struggling to gain weight and our latest attempt to advance his j feeds didn't go to well. He started having problems with the increased rate and we had to lower the rate down from <span class="spellchecker-word-highlight">74ml/hr</span> . His stomach was bothering him and there was a huge amount of air trapped in his stomach. He has done much better once we lowered the rate. We will continue to try again to advance the feeds. He is currently at <span class="spellchecker-word-highlight">73ml/hr</span> for a total of 1533 ml per day which equals <span class="spellchecker-word-highlight">1,533</span> calories.</span></span> We have follow up appointments in Boston in July.</span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD2YuoEdMpt1nen_CSyuAZiH6MC3pr9VbHFiRxR2tUNOBXpVwsJ6UKcUP8a_zzAkurJHG8Cv4DqqSvYikl-0XnVv0sWzRtWaxfx5Gn7mcjyzizWyY81Hti4MLjwSw3-36QaCF926_65_U/s1600/jill+cape.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD2YuoEdMpt1nen_CSyuAZiH6MC3pr9VbHFiRxR2tUNOBXpVwsJ6UKcUP8a_zzAkurJHG8Cv4DqqSvYikl-0XnVv0sWzRtWaxfx5Gn7mcjyzizWyY81Hti4MLjwSw3-36QaCF926_65_U/s1600/jill+cape.jpg" height="320" width="263" /></span></a></span><span style="font-size: large;"> </span></span><span style="font-size: large;"> </span><br />nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-10310301890940977502014-04-18T14:13:00.003-04:002014-04-18T14:13:50.378-04:00<div class="separator" style="clear: both; text-align: center;">
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We were in Boston earlier this week for a few of Matthew's appointments. Matthew saw his Renal Dr. , his Mito Dr. and the OT at the Augmentative Communication Center . We had to cancel his GI appointment because one of his other appointments ran over. His GI doctor is easy to reach by email , so we will just update him and reschedule it. Matthew also had the labs drawn for the total gene sequencing and for OPA1. Matthew's genectic doctor found that within the region Matthew has deleted there is one gene that could possibly be of significance (autosomal recessive inheritance), OPA1. They will sequence this gene to see if he has a mutation in the gene (and knowing he has the other copy deleted) This would suggest a possible explanation for his severe gastric dysmotility. This test takes 6- 12 weeks to get results. <br />
Matthew has grown some in height. He is now 44 inches and 37.5 pounds :) He is almost 9 1/2 and about the height of a typical 5 year old. His weight is still about the weight of an average 3-4 year old. Regardless, we are happy with any gain :)<br />
Matthew has always had a fluid intolerance issue and he is very sensitive to even the smallest changes in fluid intake. We have been working hard at trying to continue giving all of Matthew's nutrition and fluids through his gut and not have to go back on TPN. So far, he has continue to be stable in doing this. However, he does get easily dehydrated when his system is stressed due to an illness, the weather etc. Matthew will now have a written plan for IV hydration whenever needed. He will be able to go to our local hospital to get a slow rate of IV fluids whenever he is under the weather, looking dehydrated or just not himself. This should rebalance his electrolytes and perk him back up . <br />
We also bumped into his surgeon in the lobby of BCH. We mentioned his red and very raw looking Jtube stoma. She took a look and suggested putting steroid cream on it again for a week and then sending her a picture to see if it helped. So far, it still looks very red, bleeding and irritated<br />
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As for fun things we did while in Boston, there were plenty. We stayed at the Yawkey Family Inn. Matthew loves when we stay at the Family Inn since he can play video games on a large TV. :) We took a walk to the Clayroom in Brookline and painted some very cool pottery . Everyone there was so kind to Matthew. He definitely wants to go back next time we are in town. <br />
We visited the Museum of Science and saw the Magic Treehouse planetarium show. We went to the aquarium where Matthew touched real stingrays and starfish. We visited Hilliards House of Candy. This is always a treat for Matthew. He loves the soft rose mints they make. <br />
We were also able to visit our good friend Sarah at MIT. She gave us a tour of her school and showed us a few labs. Matthew was very interested and had a great time. <br />
We do have some very exciting news. Matthew will be receiving an adaptive bike from Preston's March For Energy. We have been in contact with Deb, the founder of this organization for months now. By chance, we actually met her and her family in the parking lot to the Mall in Vermont on our way to Boston. They were there presenting another sweet little girl with her new adaptive bike. Matthew's bike will have a pulley system on the pedals that should make it much easier for him to pedal. He has never been able to go further than our neighbors on his current tricycle without having to be pushed using the parent handle.<br />
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Matthew woke up not feeling well this morning. I am hoping that it will pass and that he wont have to end up going to the doctors. nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-79155546372308885722014-02-23T13:06:00.000-05:002014-02-23T13:06:52.315-05:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuHRoSDCk_R0MQPkQKmUghszaTqk6gESsrq88F7q7ocTgnnBNnSeZXvRC2dOfYY9ZQ4oCHDMEL4yGo58Cbw14HC7KkAwg8wEnuwo1TEb5Er0S_A2JO2a-eQ3RxkoCk3ZPGDYLuHcHo4aU/s1600/IMG_2035.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuHRoSDCk_R0MQPkQKmUghszaTqk6gESsrq88F7q7ocTgnnBNnSeZXvRC2dOfYY9ZQ4oCHDMEL4yGo58Cbw14HC7KkAwg8wEnuwo1TEb5Er0S_A2JO2a-eQ3RxkoCk3ZPGDYLuHcHo4aU/s1600/IMG_2035.JPG" height="320" width="198" /></a><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"></span><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"> </span><br />
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<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">It's the end of Winter break for Matthew. Back to school for him tomorrow. It was a low key break we didn't do a whole lot as the weather wasn't the best. We did go see the Ice Castle in Saranac Lake and then did some shopping in Lake Placid. The theme for this year's Castle was Celtic.</span><br />
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<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">Matthew attended a one hour archery class this week. Our town Rec Dept held classes at Gander Mountain and had an instructor come teach the proper way to shoot a bow. Matthew had a good time, his bow had to be adjusted to the lowest settings but with some extra help he was able to draw it back and pop a few balloons. </span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTwsVuL-apokpqUejZJtJPNyym_HAMkeC73rLDTANzJ80jnYiAXrPiHchDz2ZX7VE0aRpYtmdulmqt-ewbUnGJ-7PgCU2SQsKumsmA-5_nFFYidzE6FbTGONN7xDyCBeYCi4je1j9W2lY/s1600/IMG_2074.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTwsVuL-apokpqUejZJtJPNyym_HAMkeC73rLDTANzJ80jnYiAXrPiHchDz2ZX7VE0aRpYtmdulmqt-ewbUnGJ-7PgCU2SQsKumsmA-5_nFFYidzE6FbTGONN7xDyCBeYCi4je1j9W2lY/s1600/IMG_2074.JPG" height="213" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLJJjcotVPZDCf-WKANMwAmsJOnMbkY5NgcaCqPPOjNEKYOrfd0eyKnl0BoGcp3n6ENWrnqeDwdJAFvymlMKciItrG5CA7qq1MKDktQCdkGlhe-BLDU1cOLl3NqKSOOWuUPPI602P7uok/s1600/IMG_2051.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLJJjcotVPZDCf-WKANMwAmsJOnMbkY5NgcaCqPPOjNEKYOrfd0eyKnl0BoGcp3n6ENWrnqeDwdJAFvymlMKciItrG5CA7qq1MKDktQCdkGlhe-BLDU1cOLl3NqKSOOWuUPPI602P7uok/s1600/IMG_2051.JPG" height="213" width="320" /></a><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">Matthew gave us quite a scare on Thursday as he snuck a Reeses Peanut Butter heart from one of his brother's room. Matthew has a nut allergy (not necessarily Peanut Butter) and he told us right away what happened because he was having trouble swallowing and his stomach was hurting. At no time did he have any swelling, hives or trouble breathing so we didn't have to use his Epi-Pen. We gave him Benadryl and syringed the candy from his stomach (Gtube really came in handy there). Terry brought him to the Emergency Room as a precaution. He was checked out and everything was ok. Terry was told that since we reacted so quickly that we probably avoided a more serious reaction. We had to watch him closely for the next few hours just to be on the safe side. It was a close call but he is fine.</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaqZEJrUB1Bh-7S2_zUr7kEjCSpfBTwRNIfRS_-ooVbj1BnEU7PCfq8s7QNsNiLlqzq1JeV2yBxfm0anDrr6R3q_nMopKTzb8YN9gkNgG20UYhZvZlUR64cWiSziKsV85QNXgqRgp9A7g/s1600/IMG_2097.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaqZEJrUB1Bh-7S2_zUr7kEjCSpfBTwRNIfRS_-ooVbj1BnEU7PCfq8s7QNsNiLlqzq1JeV2yBxfm0anDrr6R3q_nMopKTzb8YN9gkNgG20UYhZvZlUR64cWiSziKsV85QNXgqRgp9A7g/s1600/IMG_2097.JPG" height="320" width="281" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWEEH1Y0hcSmnG4GyDDBF_-oQZ3SJInji6SpsPuAaHSwS01VzkEONd47502f4VVshDkEFO_9xSYv6UCK3uNYqzGn0DC6aVcPA2uaovy6o0aefTZbcNbeyanYbAyHqp3RTw-mgyAWehFVo/s1600/IMG_2044.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWEEH1Y0hcSmnG4GyDDBF_-oQZ3SJInji6SpsPuAaHSwS01VzkEONd47502f4VVshDkEFO_9xSYv6UCK3uNYqzGn0DC6aVcPA2uaovy6o0aefTZbcNbeyanYbAyHqp3RTw-mgyAWehFVo/s1600/IMG_2044.JPG" height="320" width="213" /></a><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">Matthew was able to go outside twice and play in the snow for the first time this winter. It's been too cold for him, many days we've had negative temperatures as our high temps for the day. He built a snowman complete with Gtube and an ostomy (his ideas but my muscles lol) . He named him Super Snowman Sam. Even though he was outside for a short time and bundled up, Matthew didn't do well being outside. Both times , he came in shaky and dizzy. It took a lot out of him but he enjoyed playing in the snow.</span><br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">On the medical side we went to Boston and saw Matthew's Metabolic doctor on the 13th. Steven was also seen because of his issues that he had in the fall. Steven had some labs drawn and we should get the results sometime this week.</span><br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">We saw a Fellow who is a Pediatric Neurologist who is training in Metabolism/Genetics with an interest in Mitochondrial Disorders.He examined Matthew first and then Matthew's doctor, Dr. B. came in. He was pleased with how Matthew was doing with his feeds and then we talked some about the testing we are waiting to come back and what to do next if the testing doesn't show anything. He has been trying to determine if there is a genetic cause for Matthew's condition. </span><br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">We got an email from the NP that works with Dr. B that they may have found something in his bloodwork from 2010. Matthew has a deletion in one of his chromosomes, 3q29. What this means is part of this chromosome is missing. At the time they didn't think it was important because Terry has the same deletion(we were both tested). However, the Fellow found that there is a type of specific type of Mitochondrial Disease associated with this chromosome being defective called Optic Atrophy 1. Since Matthew has the known abnormality in this chromosome and has many of the symptoms this could, I'm stressing could, be the cause of his illness. There are two copies of each chromosome in your body. They need to test the second copy of the 3q29 chromosome to see if has any mutations or deletions. If it does then this is the likely cause of Matthew's Mitochondrial disease. That means Matthew was born with these abnormalities and didn't get it from an illness which can sometimes cause Mito disorders. If this is confirmed we were told that at this point it wouldn't change Matthew's treatment. However, this could lead to a new treatment or medicine.</span><br />
<br />nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-70131306605567550372014-02-02T17:42:00.000-05:002014-02-02T18:30:51.129-05:00<br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">Matthew had a very busy weekend.</span><br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">- <strong>Friday night </strong>he saw his favorite band, Glengarry Bhoys perform at Olive Ridleys. His friend Lily and her brother Jack were also there. He danced, sang and hung out with his friends. </span><a href="http://youtu.be/6MXraHwNWok" rel="" target=""><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">http://youtu.be/6MXraHwNWok</span></a><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"> </span><br />
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<a href="http://youtu.be/H__SiOtkfhw"><span style="font-size: large;">http://youtu.be/H__SiOtkfhw</span></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIAbp1aAqZk5fcA_C0jcqgBWaMkO5tqh6P9ciPYg0m3Vp80lm-L9Fkw519kB3mgz7JpESKvsJfEbV1Xv54awv8PfMDkcD_ZxxOCGXXojxaY5xkUxSOKHRvFfSEHY_HD_n6wQ8ZTvgqosc/s1600/IMG_1914.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIAbp1aAqZk5fcA_C0jcqgBWaMkO5tqh6P9ciPYg0m3Vp80lm-L9Fkw519kB3mgz7JpESKvsJfEbV1Xv54awv8PfMDkcD_ZxxOCGXXojxaY5xkUxSOKHRvFfSEHY_HD_n6wQ8ZTvgqosc/s1600/IMG_1914.JPG" height="217" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1H-1Q6Jm2mkcU9gFWpjJLnDxsMJgiFhPrS7e289PIjWOq12WL5TgOJ0WtihpUEZkgVeSDogPKwlMyuoc0kmIE-Xa0X9j1HVZqAjANuhDry3tngIyEe8TO94uFXaelRRjhgtxm1TZdufk/s1600/IMG_1922.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1H-1Q6Jm2mkcU9gFWpjJLnDxsMJgiFhPrS7e289PIjWOq12WL5TgOJ0WtihpUEZkgVeSDogPKwlMyuoc0kmIE-Xa0X9j1HVZqAjANuhDry3tngIyEe8TO94uFXaelRRjhgtxm1TZdufk/s1600/IMG_1922.JPG" height="226" width="320" /></a><span style="color: #6aa84f;"><span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-size: large;">-<strong>Saturday</strong>, Matthew attended <a href="https://www.facebook.com/SnowballCelebratingWinterInTheNorthCountry?hc_location=timeline" rel="" target="">Snowball: A Celebration of Winter in the North Country</a> .He caught the "golden snowball" (a gold soft ball) thrown by our city Mayor. He was not a fan of being outside in the cold, but was a trooper about it. We didn't stay long, but at 35 degrees, I believe the rest of the community was thinking it was a heat wave. </span></span></span><br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">Matthew also had a photo session done by a local photographer, Ken Brodeur. He approached us a few weeks back at the Make a Wish Bridal show and asked if we minded if he did a photo shoot of Matthew at his studio. Matthew loves to have his picture taken, so we agreed. He did a wonderful job. You can check out the proofs here: </span><a href="http://www.kenbrodeur.com/matthew" rel="" target=""><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">http://www.kenbrodeur.com/matthew</span></a><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"> </span><br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">Since yesterday afternoon, Matthew has been on the couch just relaxing and recharging. </span><br />
<span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">Check out some of the new video links and pictures I have added.</span><br />
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<a href="http://youtu.be/7uxXs3BZvog" rel="" target=""><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">http://youtu.be/7uxXs3BZvog</span></a><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"> Matthew talking about how his doll "Pancakes" broke his leg</span><br />
<a href="http://youtu.be/HngTiAw3Y1M" rel="" target=""><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;">http://youtu.be/HngTiAw3Y1M</span></a><span style="color: #6aa84f; font-family: Georgia, "Times New Roman", serif; font-size: large;"> Matthew singing</span>nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-12517553289354534462014-01-19T11:55:00.002-05:002014-01-19T11:55:28.009-05:00<div class="separator" style="clear: both; text-align: center;">
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Here is a recap of our latest trip to Boston: <br /><br />1) GI - The doctor is pleased at how well we've been able to advance his feeds. Before the feeding trial in October Matthew's rate was at 58cc/hour and total volume was 1220cc/day. He's now at 70cc/hour and total volume of 1470cc/day. Matthew still needs to get an additional 400cc per day to get what the doctors think he needs for his fluid and caloric intake. We've hit another bump in the road and the GI is calling Matthew's Nephrologist to come up with a plan to advance the feeds. <br /><br />2) Complex Care - We discussed a number of things at this appointment, the biggest one was how to get Matthew back on his Mito Cocktail. His insurance has stopped paying for it back in July and we can't afford the close to $1000.00 every month for it. She is going to see what other alternatives we might have and resources that might be available. <br />We also discussed the problems Steven had this fall and she agrees that it is a good idea for Steven to come to Children's for an evaluation given Matthew's history. <br /><br />3) Surgery - Pretty straightforward, Matthew's incision has healed nicely. Matthew's J tube site has been irritated and infected. We had a culture done and showed her the results. She said the site looked ok but to keep an eye on it since there is some granulation tissue building up, and if it got worse to let her know. <br /><br />4) Cardiology - Another easy appointment. Matthew's Echo and EKG looked good, no changes from prior studies. We did discuss Matthew's tendencies for fast heart rates after procedures. She said its just his autonomic response to stress. The doctor said it was ok for him and to not let someone treat him for it as it could cause more problems once he got back to his baseline. She said to page her if this ever became an issue with someone wanting to treat it. <br /><br />5) Orthopedics - We discussed Matthew's issues with the braces he had been given during the summer. Matthew had problems with bursitis developing on both heels and the AFO's they wanted him in had a special rubber boot inside it. We couldn't find shoes big enough and the boot made his feet get too hot. After doing a not so thorough exam, she agreed that the AFO's with the boots were not good for him. She wants him to use his prior kind the spring leaf AFO's without the boot. She also said Matthew does not need to wear the AFO's all the time. We have already been doing this. He doesn't wear them when at home inside the house or if he isn't going to be very active. <br /><br /><br />Highlights from this trip: <br />1) We got to visit our good friend Sarah on her birthday. Unfortunately she was in the hospital on her Birthday (3 years in a row) but worked out for us as we had an appointment that morning in the same hospital. We were able to spend a few hours with her. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkGumHtKMbWrMN7BdzVH4nRU8CKdxiGAIZujAOzLgLot7RB2IfGB5CFrV8LvuKmGBkFNPTfxY1xVgDyui0hM1Nfyfoeoir4yNW5QyLBeGY2wyPOEcYgy2IHznfUyfDS9Kr6T3ag3nB0t4/s1600/sarah.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkGumHtKMbWrMN7BdzVH4nRU8CKdxiGAIZujAOzLgLot7RB2IfGB5CFrV8LvuKmGBkFNPTfxY1xVgDyui0hM1Nfyfoeoir4yNW5QyLBeGY2wyPOEcYgy2IHznfUyfDS9Kr6T3ag3nB0t4/s1600/sarah.jpg" height="320" width="240" /></a><br /><br />2) We always seem to be in the right place at the right time. In between appts on Thursday we were walking by the Patient Entertainment Center at Children's when we saw they were doing some crafts. The people were from the Museum of Fine Arts. They were doing wire crafts and Matthew really impressed them with his knowledge of Greek Mythology. They were handing out passes to the Museum and we went after our appts. The museum is just a 15 minute walk from the hospital. We had a good time there and the Mummy tombs freaked Matthew out. Unfortunately we couldn't see the paintings of the Greek Mythology section as it was closed for a private party. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkDzRTMD8QeC8jQ4SXm7LMkW12LmIpMcBikCjcwpbu4rh6rNBpBpJKh5Fppo-W7mXInMPUv67JnZXzvDjNAy1obC8OUcYz1Zky9xybGe8w-rjF9WKNWav2TFH8EmWJ-g4h8rgWlzrev9Q/s1600/mummy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkDzRTMD8QeC8jQ4SXm7LMkW12LmIpMcBikCjcwpbu4rh6rNBpBpJKh5Fppo-W7mXInMPUv67JnZXzvDjNAy1obC8OUcYz1Zky9xybGe8w-rjF9WKNWav2TFH8EmWJ-g4h8rgWlzrev9Q/s1600/mummy.jpg" height="320" width="240" /></a><br /><br />3) We learned that in order for Matthew to actually get on the growth chart (3rd percentile) by his 10th birthday in November he would have to gain 17 pounds and grow 7 inches in 10 months. We chuckled at that. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipGAgkrL9TmRuHydo7CuHqXD2o3z2uUHYGZgYA8O9N6qDOcZv7soRnB8SWey_4_j3QU7GU9FFhjVbxia-tL06QUZdFZ_rsX7eGpcRL6xEINz_Gfc5eplonbbfWyA4LLQoVK08yR5L5CV0/s1600/growth+chart.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipGAgkrL9TmRuHydo7CuHqXD2o3z2uUHYGZgYA8O9N6qDOcZv7soRnB8SWey_4_j3QU7GU9FFhjVbxia-tL06QUZdFZ_rsX7eGpcRL6xEINz_Gfc5eplonbbfWyA4LLQoVK08yR5L5CV0/s1600/growth+chart.JPG" height="234" width="320" /></a><br /><br />4) Matthew's Cardiologist at Children's had one of the best descriptions of Matthew. "At an institution of this size where we see every sort of thing, Matthew certainly stands out as an unique individual with very unique challenges". While we've always wanted our children to be unique and stand out we never really wanted any of them to be this unique. nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-34113426061125758582013-12-30T15:32:00.001-05:002013-12-30T15:32:36.448-05:00Flipagram - December 30, 2013<iframe allowfullscreen="" frameborder="0" height="344" src="//www.youtube.com/embed/eKXXpN_urX4" width="459"></iframe><br />
nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-61653069188543217512013-11-16T10:22:00.003-05:002013-11-16T10:22:59.304-05:00<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiubjSZEATxT4SuIIgdj0zir9ytF02F_nDAV-Vd92srJ4ud0XZR4bqv50ibRDmtWlD8a8zZ8PECs6QtS7FePPD7tTSRVVJKHZcqSNrZbjsSA1sYag1kZtt440qUyysdjhIh5jyGhtscLTc/s1600/IMG_9907.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiubjSZEATxT4SuIIgdj0zir9ytF02F_nDAV-Vd92srJ4ud0XZR4bqv50ibRDmtWlD8a8zZ8PECs6QtS7FePPD7tTSRVVJKHZcqSNrZbjsSA1sYag1kZtt440qUyysdjhIh5jyGhtscLTc/s320/IMG_9907.JPG" width="320" /></a></div>
<span style="color: blue; font-family: Georgia, "Times New Roman", serif;">Matthew came home early from school this past Tuesday and Wednesday . He was feeling dizzy and having headaches. I brought him to his pediatrician on Wednesday afternoon. She was concerned that his resting HR lying down was around 106 and his standing HR was in the 140's. She wanted us to let his doctors in Boston know since this can be another sign of dehydration. His labs from Monday also showed a low K level and an elevated CO2 . On a good note , he stayed in school full days the past two days. We are holding off on giving him the extra water boluses through his J tube to see if it has anything to do with the dizzy spells. Matthew said that he still feels dizzy, but said its better than it was earlier in the week.<br /><br />Steven is still not well. He went back to the doctors on Monday and is out of school for another month or until we get his medical issues figured out. He needs a GI and cardiology workup done. He will be going inpatient at our local hospital on Monday. He has lost over 16 pounds, feels dizzy and is not able to eats foods other than a bland diet of bagels, toast etc. We are hoping that we get some answers and that its an easy solution. He is missing his friends and school.</span><br />
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<span style="font-size: large;">A few pictures from Matthew's last inpatient stay in Boston</span> <br />
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Matthew's friend Aomar Naittalb from MGH :)<br />
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nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-67178333649934599882013-10-05T19:55:00.005-04:002013-10-05T19:55:44.885-04:00<div class="separator" style="clear: both; text-align: center;">
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<span style="color: #38761d; font-family: Georgia, "Times New Roman", serif;">Matthew has not been doing the best in terms of his feeds. We have attempted to get more weight on him by increasing his feeds. He was getting his feeds and 58/hour and over a period of 5 weeks we slowly increased the rate to 61/hour. Unfortunately Matthew has lost a pound during this time. He is almost 9 years old and only 34 pounds. This is our 3rd time trying to get Matthew past this point and he has done the same thing each time. <br />Terry spoke to Matthew's GI doctor in Boston and he wants to put Matthew in the hospital to see if we can get some weight on him. He had us lower the rate back to 58/hour to see if Matthew can gain back the weight he lost. Matthew's doctor is going to try and think of some different ideas to help Matthew. A different formula, another supplement or possibly putting Matthew on TPN even for a short time. We are hoping to avoid a hospitalization but will do it if there are no other options. <br />Matthew is still without his Mito Cocktail as his insurance stopped paying for it. Terry is working on some things that may get it covered. We can't afford to pay for it ourselves as it costs $800.00 - $1000.00/month.</span><br />
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<span style="color: #38761d; font-family: Georgia, "Times New Roman", serif;">Matthew had his overnight sleep study done last week in Vermont. He didn't mind it at all and fell right to sleep. We should get the results this week.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBvsSye_cSE9zRNE4WFh80IaSRCAF4Z-EJJ5C4ypRfD25sIYC_cUnqjEGP9e32gnB599ghA5LBpdwJj_t-aAaZ6pkvysQ9dnjy8_Ou85a3oMAPqQRbguFUpQofiiyRjkA3m1be0R6jd88/s1600/IMG_9135.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBvsSye_cSE9zRNE4WFh80IaSRCAF4Z-EJJ5C4ypRfD25sIYC_cUnqjEGP9e32gnB599ghA5LBpdwJj_t-aAaZ6pkvysQ9dnjy8_Ou85a3oMAPqQRbguFUpQofiiyRjkA3m1be0R6jd88/s320/IMG_9135.JPG" width="240" /></a><span style="color: #38761d; font-family: Georgia, "Times New Roman", serif;">Despite the current medical issues, Matthew is enjoying 4th grade. He likes seeing his friends and he loves his teachers. He also looks forward to weekend play dates with his friend Ava. They are super silly together. Last weekend, they spent the day together in Albany for a Starlight function at the Pottery Place.</span><br />
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nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0tag:blogger.com,1999:blog-3780255820007917076.post-89131257003299745952013-09-20T07:06:00.002-04:002013-09-20T07:11:25.888-04:00 <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGJnQTuaSa_AzvT-8oVbHpv6Wht-eW4aVCqRCI4ECOrgjr0DvG2V3t9zaEku5dz7CCgggdt5kbVoQr0ufLVr3_1XvHxzf32Gj96B9BUXcCYjdknOkG5hA1WwWwwLSvSuGLbGSADMLYL0A/s1600/day+3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGJnQTuaSa_AzvT-8oVbHpv6Wht-eW4aVCqRCI4ECOrgjr0DvG2V3t9zaEku5dz7CCgggdt5kbVoQr0ufLVr3_1XvHxzf32Gj96B9BUXcCYjdknOkG5hA1WwWwwLSvSuGLbGSADMLYL0A/s320/day+3.jpg" width="320" /></a><br />
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<span style="color: #38761d; font-family: Georgia, "Times New Roman", serif;">We are in the midst of Mitochondrial Awareness week. We have been posting pictures of Matthew and our friends helping raise awareness for a disease that claims more children than pediatric cancer does. We have some really wonderful pictures of people showing their support of ridding us of this horrible disease.<br /><br />We are not having the best week ourselves though. We are having a hard time with Matthew's insurance once again. We are still trying to find a way of getting his Mito Cocktail covered. The insurance was covering it and then they decided to change what they will cover. This has affected us but many other people as well. Another problem is getting his feeding supplies to us. Every so often the insurance requires an authorization to continue covering the feeding supplies (formula, bags, tubes, etc). It is always a nightmare because it takes so long to get and Terry spends a lot of time with the insurance and supply company to get this taken care of. We are always very close to running out of his formula and it gets very stressful. If he runs out of food we would have to bring him to the hospital.<br /><br /> Matthew had his checkup with his pediatrician yesterday who has taken care of him for almost nine years. Just like every visit both the nurse and doctor went over his medicines and allergies. He is allergic to eggs and nuts and a couple of medicines. His pediatrician prescribes Matthew an Epipen for egg exposure. <br />Matthew has never been able to get the flu vaccine because of his egg allergy. There is a new egg free flu vaccine that doesn't use eggs in the manufacturing of it. Terry asked for the egg free flu vaccine for Matthew because of his egg allergy. He asked 6 or 7 times if the vaccine being brought in was egg free. He was told by the nurse giving the nasal FluMist that it was egg free. He wasn't given a fact sheet on the flu vaccine that Matthew received. I looked online and found out that the vaccine Matthew received is not for people with egg allergies and/or metabolic disorders (Matthew has Mito disease). Matthew had a reaction to the vaccine with muscle spasms, itchy legs and twitching around his mouth(luckily no swelling, hives or shortness of breath). Terry called the pediatrician and we did not get a phone call back from her. Terry called Matthew's metabolic doctor in Boston and was told Matthew needed Benadryl and would need to be brought to the ER if he got worse(he didn't).<br />Terry called the flu vaccine manufacturer and had to fill out an adverse reaction report because under no circumstances should Matthew have gotten that vaccine. He was told by a pharmacist for the manufacturer that the CDC doesn't recommend nasal FluMist for egg allergic people or people with metabolic disorders because there are NO clinical studies showing if it's safe or not in those kinds of people.<br />Terry talked to the nurse who gave Matthew the vaccine and was told she didn't know he was allergic to eggs (it's on his chart and Terry asked several times if the vaccine was egg free). The nurse claims Terry asked about an ingredient we have never heard of, Thimerasol a preservative. She said she was sorry for what she did and is glad Matthew is doing ok(he seems to be ok at the moment). Matthew now has a live vaccine inside of him that he should never have gotten. Imagine the fear of not knowing what the hell to expect because someone screwed up.</span>nyveggiehttp://www.blogger.com/profile/18354785922254256344noreply@blogger.com0