tag:blogger.com,1999:blog-39383012974807253822024-03-05T20:29:17.770-08:00Hypoplastic Left Heart BabiesLisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.comBlogger87125tag:blogger.com,1999:blog-3938301297480725382.post-16177976400644665692023-01-10T18:51:00.000-08:002023-01-10T18:51:02.229-08:00Much Needed Update<p> Long, Long, Long time.</p><p>It's unbelievable to think of the things that have happened since that last post. Mostly because it was one month before the world was flipped upside down by a global pandemic. Jack got COVID-19. January 2021 (so the original version, not a strain.) He handled it better than I did, suffering only a sore throat for a couple of days during the 10 day quarantine.</p><p><br /></p><p>Jack is now 17. He drives himself to school. He has a job and an income. He reads music and plays the drums like a boss. He is so much fun to hang out with! It is interesting how different "baby Jack was from "kid Jack", to "teen Jack." We talk about everything. He makes me laugh. We argue. He is this whole person now.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh42Nmy-uQdfQhkWUjxO_NZWsNr9BHV50DdLLApTQjiOArzWDmKak9BZONDot4BTlNgud7_YZ4DYHN2rnlLbyZmHvhi_-vyqh_pyGoasuEHV0om95PQ5UH2TmcYflK0EK39oLsT1G75xd1pzSrRJgqj-LhSD2ns2FxFUz_TkpPhC8bW3ye9FimT_ZiOBg/s3088/ENRY5036.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2316" data-original-width="3088" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh42Nmy-uQdfQhkWUjxO_NZWsNr9BHV50DdLLApTQjiOArzWDmKak9BZONDot4BTlNgud7_YZ4DYHN2rnlLbyZmHvhi_-vyqh_pyGoasuEHV0om95PQ5UH2TmcYflK0EK39oLsT1G75xd1pzSrRJgqj-LhSD2ns2FxFUz_TkpPhC8bW3ye9FimT_ZiOBg/s320/ENRY5036.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-GwFpwTnxazwpuP_ZSe3LConLDr7PJpgCYb1elJONBpX_qY7HNsn8KMDF4Ax-xNpPaV_drtYFCBi8ZOJqEoJtjOtew3mNQsdhRtf9T5NsAuqLTjI66_x6A7uKRwMzUONa94IcFwX5Z16fcdJ719mHB4Qnflb-EzR-Z_GGSJKhzmzUQDbV58dzfwZpLw/s3780/JCFU7324.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3780" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-GwFpwTnxazwpuP_ZSe3LConLDr7PJpgCYb1elJONBpX_qY7HNsn8KMDF4Ax-xNpPaV_drtYFCBi8ZOJqEoJtjOtew3mNQsdhRtf9T5NsAuqLTjI66_x6A7uKRwMzUONa94IcFwX5Z16fcdJ719mHB4Qnflb-EzR-Z_GGSJKhzmzUQDbV58dzfwZpLw/s320/JCFU7324.jpeg" width="256" /></a></div><br /><p><br /></p><p>Jack is a Junior at Paradigm High School. He loves school. We have struggled a bit with ADHD and grades, but he still loves to go and learn. </p><p><br /></p><p>Jack's dream is to "entertain." He loves to perform and always has. But only under his own terms. If one day Jack is a famous YouTuber, it will be the end of the rainbow for him. Truly I will be always be happy as long as he is happy. <br /></p>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-9320534397408849622020-02-19T08:16:00.001-08:002020-02-19T08:16:21.919-08:002020 (Is that really a real year?)<div class="separator" style="clear: both; text-align: left;">
I plan on printing this whole blog as a recollection of Jack's journey, his childhood, and his progress. He has grown up so much in the last few years. Next fall he will technically be a freshman in High School (?!!) I'm so proud of him because I see the challenges he faces every day and he keeps on going. </div>
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(Jack 6th grade)</div>
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(Jack 7th grade)</div>
Jack struggled a bit with the transition to Jr. High. His friends changed, he changed, his grades went down a bit and he got in a rut. We changed schools, adjusted his social atmosphere and got him on some ADHD medication as well as a therapist to talk to. I believe although it was a massive recovery that happened quickly r obviously, those steps were important and have helped him in the long run.<br />
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(Jack 8th grade)</div>
This is Jack's final year in Jr. High. We was accepted to a Charter school called Paradigm High School and will be attending there for the rest of his grade-school career. He is smart, talented, an excellent drummer and musician, and has a silly sense of humor. I hope he continues to grow his mind, his body and soul and that he is appreciated by all those who meet him.<br />
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Jack has his l4 year Annual Cardio check up in February. Dr. Su was pleased with all test results, echo results, and holter monitor. He says Jack is doing great and we continue to watch his liver. I always feel like these appointments are "green lights" for the next year. It's always a relief.</div>
<br />Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-29834437316359902182018-04-09T08:38:00.003-07:002018-04-09T09:11:22.628-07:00NINE YEARS Since Jack's Last Heart Surgery<div class="separator" style="clear: both; text-align: center;">
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<a href="https://www.youtube.com/watch?v=0qmbJKo39MU" target="_blank">Click here to view our Fontan Journey</a>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-89045434946893376202018-03-26T09:54:00.002-07:002018-03-26T09:54:32.435-07:002017 Annual Cardiac Check-UpJack had his yearly work-up with Dr. Su on January 29th, 2018. I count my lucky stars that we have been able to consistently see the same Card since before Jack was even born. That kind of comfort is inexplicable.<br />
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Jack never used to get nervous but he's old enough now that he kind of knows the routine, and the thought of having to do labs sends him into a bit of a vacuum. Nothing else matters. Luckily, Dr. Su knows that and offered Jack a deal. He said "You can either wear a 24/hour holter monitor, or do labs today. Which do you want?" Jack of course chose the holter. But that deal means he has to do labs next year. So- now he knows it's coming for sure...<br />
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So unfortunately, we don't know his liver count. It's unnerving, but at least Dr. Su doesn't think it's urgent enough to even DO labs. So that's nice. All Jack's tests are normal. EKG looks good, x-rays good.. all results show that he is "the same" which is always great, because he's usually doing really well.<br />
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We are so grateful for this great hospital, its resources and its amazing staff.<br />
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Jack is finishing up 6th grade and will be going to Jr. High in the Fall. (Gulp.)<br />
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We love him and and are so proud of his great accomplishments. I just feel lucky to be along for the ride :)<br />
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<br />Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-49970978150382409062016-12-16T15:27:00.002-08:002016-12-16T15:34:12.462-08:002016 and Growing-<div class="separator" style="clear: both; text-align: center;">
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It is his 11th birthday tomorrow. This time, 11 years ago, I was on bedrest. I had an induction date of December 29. His due date was the 27th. He decided he was ready to face his battle with Oxygen and come into this world at 11:36pm, the night of a snow storm, the U2 concert, and my family Christmas party. Jack has always been one to compete for attention.</div>
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So here we are, 11 years later, 5 surgeries later, many months in the hospital later.... with this incredible boy who has faced EVERY obstacle fearlessly and with great strength. I look back and wonder how we all did it. But I know it was all worth it.</div>
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Jack is doing so well. We haven't had our annual visit with cardio yet this year so I'll probably do another update. But his pediatrician said that Jack's body may have finally figured out that it can keep growing at a steady pace because he's gone so long without surgery that it clicked and he's starting to catch up. He also said the very scary words "pre-pubescent" which made my heart hit the floor. But I suppose it's a milestone I should be happy about.</div>
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Jack has been able to do so many things. His restrictions are less than they were a few years ago. We have done so many adventurous things that I would never have imagined we'd be able to do with a HLHS boy. We've hiked to 10,000ft, we've snorkeled, we've gone on roller coasters. It's been a dream.</div>
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Jack will be attending Canyon Rim Academy for his 6th year in elementary, then it will be off to Middle School. This whole journey has been surreal and I recognize how lucky we are. I feel both guilty and grateful- because I my heart hurts for so many families struggling with CHD's, however I love that Jack can be a source of inspiration and hope for others. He is my hero, my rock and my purpose.</div>
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Merry Christmas... and a happy HEALTHY new year to all of you!</div>
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<br />Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-53322942516171245262015-08-08T10:53:00.001-07:002015-08-08T10:53:45.835-07:002015 Update: Single Ventricle Survivorship Clinic, New Pediatrician, and 4th Grade!<div class="separator" style="clear: both; text-align: center;">
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I realize that people read this blog and learn about Jack's history- but wonder about how he is doing now. I myself am always thinking about those HLHS'ers that are living lives as teenagers and adults and get curious about their lifestyles, limitations and abilities. So here's an update on our little Jack.<br />
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Jack is currently 9 years old, and getting ready for the 4th grade. He is very active, never naps- and is constantly moving. I'm always surprised at how much energy he has. He wears me out. This summer I have been taking Jack on hikes with me. We live at a relatively high elevation as it is, so getting up in the mountains should be taxing on Jack, but he does so well. I'm so proud of him for pushing along and making it to the destination of each hike.<br />
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Last weekend we did Timpanogos. The hike to the caves is a perpetual incline and a mile and a half long. You gain 1092ft in elevation and finish at 6,400ft. Jack did GREAT. We only a rested a few times and he felt great when he got to the top. Not to mention the caves. He couldn't stop talking to the guide and was basically jumping up and down during the whole tour.<br />
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Another huge event was our first visit to the Single Ventricle Survivorship Clinic at Primary Children's. They have started a clinic specifically for single ventricle kids to study how the <a href="http://hlhsbabies.blogspot.com/2009/04/fontan.html" target="_blank">Fontan</a> affects the rest of the organs long term. So before our visit we had a number of tests.<br />
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1. DXA Scan, where they scan his body to view his skeleton and the "age" of his bones.<br />
2. Stool sample... fun<br />
3. Blood draw... ALWAYS a treat<br />
4. Wrist X-Ray<br />
5. Liver ultrasound<br />
6. Exercise test<br />
7. Lung test<br />
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After completing these test we meet at the clinic with the Liver Team, the Endocrinology Team and the Heart Team. Here is what we learned from each:<br />
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Liver Team: Jack's liver is experiencing some expected back flow of blood. (As most fontan patients do.) This backed up blood causes the liver to create scar tissue, the scar tissue can change the shape and texture of the liver, it can cause nodules which could turn into tumors on the liver. This is something they watch for with all fontan patients. Jack's isn't severe, but it is the very mild, beginning stages of liver disease.<br />
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Endocrinology Team: Jack is growing just fine. He is skinny, but Josh and I aren't huge humans either. His development is normal. The Dr. recommended he get extra calcium and Vitamin D. She didn't endorse SUN bathing, but told me that a healthy dose of sun each day is good. We started Jack on one TUMS a day for calcium, because he doesn't drink a lot of milk. This is prime bone building time, so we want to take care.<br />
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Heart Team: The heart team informed us that Jack's lungs are not expanding all the way, thus limiting his endurance. They recommended he get some good aerobic exercise and controlled breathing practice to help strengthen his lungs. We have enrolled him in swimming lessons. The deep breathing involved with swimming will be beneficial. I worried about pushing Jack to hard and Dr. Menon said "you can't break him.. he's not going to have a heart attack... these muscles are meant to be exercised." So I felt better after he said that. Also, Jack's fenestration never closed after his fontan. Dr. Menon said it might help him if we closed it. Jack freaked out a little. We explained it is just a cath, and not a surgery. It's very evident that he is much more present at Dr. appointments that he used to be. We will leave it up to Dr. Su, Jack's cardiologist, to whether or not we will proceed with closing the fenestration. Then Dr. Menon explained that it wouldn't be a BAD idea to have a formal evaluation for ADHD. Jack for SURE has a short attention span and can't hold still or be quiet for very long. I don't want to hurry and get him on meds, but learning about mood and behavior will certainly help in that department. They said that lots of kids that have spent time on bypass struggle with attention disorders. Lastly, Jack's Hepatitis B vaccine didn't stick, so we need to do that again. Apparently that has been happening with these kids. Weird.<br />
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So we have started pushing Jack a little harder, encouraging him to go further even when he is a littler tired. It's nice to see that he CAN do it, and he DOESN'T collapse. He is very capable and it gives me comfort to think that we are making his organs stronger and helping him sustain.<br />
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These kids are incredible. I love hearing about them progressing and growing. I would love to hear from any of you who are further along in life with HLHS'ers, whether it be the readers or children of the readers... I would love to hear from you. Thank you all for reading and staying in touch during this life-long journey of a boy with Hypoplastic Left Heart Syndrome.</div>
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Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com2tag:blogger.com,1999:blog-3938301297480725382.post-66688866642791368962014-10-07T13:25:00.001-07:002014-10-07T15:06:43.538-07:00Doing well-I know how comforting it is for parents to see other parents going through the same trials, but in the same respect, it is comforting to see those who came out of those trials WELL and are doing great!<br />
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I thought I would share a little about what Jack is up to, and how his condition affects him today.<br />
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Jack is in the 3rd grade. He will be turning 9 this December. (WHAT?!) He is extremely creative and is ALWAYS doing something. Is current love is Batman. He has a sweatshirt that looks like a bat cape and mask and has been wearing it everyday..</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip1NxbqsYzIjzxrvnFZskp5ZY2mJNzZZ4ZeRu1k6zABtpO9zVQu6jObd2Kf-qFQ44xlZK7159drv_wgcHSbQN-qYNXkolIOPGQ6Yx7OEGlDdWm431pmoW9zI37rLpHsu5U50HLrRK_IF6x/s1600/batman.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/AVvXsEip1NxbqsYzIjzxrvnFZskp5ZY2mJNzZZ4ZeRu1k6zABtpO9zVQu6jObd2Kf-qFQ44xlZK7159drv_wgcHSbQN-qYNXkolIOPGQ6Yx7OEGlDdWm431pmoW9zI37rLpHsu5U50HLrRK_IF6x/s1600/batman.jpg" height="320" width="240" /></a><br />
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He also loves making things. With his love of Batman he has turned his room into a bat cave. Cutting black bats out, gluing googly eyes on them and hanging them upside down above his bed. He builds with Legos. Creating his own ships, cars, buildings and creatures. He can write books; his 2nd grade teacher showed me a book he wrote about "drugs".... and how there are "good drugs" and "bad drugs," siting "Aspirin" as a good drug.<br />
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Jack goes to Theater Camp. We tried soccer but the hot afternoons and running didn't suit him.. he enjoyed it, but couldn't always keep up. He loves to be on stage and get attention so theater was a wonderful choice. They are doing "Frozen" this season. He also attends Scouts. They have a mile long bike ride this wednesday that he is nervous about- but I'm sure he will do fine.<br />
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Last week as I picked him up from school he asked "Mom, will I need a heart transplant?" I had never prepared myself for that question. Probably, because I don't know the answer. I asked him why he was wondering. He told me someone in his class explained how her cousin had a heart transplant and has been in the hospital for months and months. He was more worried about being stuck in the hospital, than the actual transplant itself. I explained to him that his doctors haven't once mentioned a transplant, but perhaps one day he may need one. I could tell it made him nervous so I told him it wouldn't be till he was much older.<br />
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I forget sometimes how aware he is about his situation, and how he is getting older and smarter and can actually process what is going on inside his body.<br />
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He so tough, brave and incredibly active. I can't imagine what he'd be like if he was at full capacity. He would probably be levitating.<br />
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I hope you all look at your heart babies and see the miracle inside of them. I feel so lucky to be in a place where he received the care that he did.<br />
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Prayers and love to you and yours,<br />
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LisaLisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-51077908120175754012014-01-06T19:21:00.000-08:002014-09-22T19:21:56.087-07:00New Years TreatSo, December 31, 2013. Jack decided he was very sick. I took him to our Pediatrician and his blood pressure was waaaay up and sats down. It wasn't pneumonia, but they felt he needed to be admitted. So over to Primary's we went. Jack was diagnosed with the "metaneumovirus" which is a super nasty cousin of bronchitis.<br />
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It took lots of oxygen to keep him at 90. The Doc's wanted him to be at 90 on room air in order for him to go home. It took ONE WEEK, and me tampering with the oxygen tanks at night, and my Ped and Cardiologist to get us out of there. We let it run its course and at this point the bills were racking up. He healed- but it took a lot of time. I bought a pulse oximeter so I could watch his sats at home. It's a blessing... and a curse. But having an 8 year old in the hospital is SOOO different that it was when he was 3. He's demanding, whiny, rude, fidgety, sassy.... It was very difficult. He would say I don't care about him and cry and I would explain that I was there for him and nothing else. It was really difficult. It sort of made me grateful that we have the OHS's before the kids get attitudes and learn how to take advantage of parents.<br />
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Anyway- I'm of course grateful he is healthy and made it through unscathed. It was a huge wake-up call that just because the 3 surgeries are done, that doesn't mean life will be peaches and cream from then on. Our heart warriors are fragile and will always need extra care. I love him and hated watching him feel so crummy. Thank heavens we live so close to Primary's and have such attentive Doctors.<br />
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Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-74049182894341435812013-07-07T20:39:00.001-07:002014-01-10T09:20:14.698-08:00Up and ComingIn effort to spread awareness and help those families and organizations involved with CHD's, we've started up an Etsy Shop selling jewelry that will help celebrate our heart heroes and our heart mom's. This is a sneak preview, as the shop has not officially been advertised as "open" but here is a sample of the kind of stuff we will be making and selling. $1.00 from each sale will be donated privately to Intermountain Healing Hearts, a support group for families affect by CHD's. Thanks to those who've inspired me, motivated me, and kept me sane during our long, continuous journey with <a href="http://hlhsbabies.blogspot.com/2008/01/welcome-all-friends-and-family-of-those.html">Hypoplastic Left Heart Syndrome.</a><br />
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These tokens commemorate surgery dates, birth dates or any date that is special. They are wonderful reminders of how lucky we are to be influenced by such strong people. Mine holds the dates of each of Jack's open heart surgeries.<br />
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This bracelet is $18 + shipping. I can do names instead of dates, as well.<br />
To Purchase a bracelet please email me at lisamarietrent@gmail.com.Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com1tag:blogger.com,1999:blog-3938301297480725382.post-81644338630232884182012-12-19T07:48:00.001-08:002012-12-23T08:09:49.890-08:00A Positive Look to the FutureMany of us heart parents are living each day with the "unknown." It's as though after the Fontan, it's all uncharted territory we are faced with, being that this whole procedure IS quite young. When explaining Jack's prognosis to people I usually finish with "The oldest person with this heart condition that has had the same surgeries as Jack is about 30... so we don't know a whole lot past that."<br />
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But most of us only hear about the babies. The most crucial time of their lives are those first years to get through the three stages and come out the other side able to sustain themselves. Then, and for good reason- we don't hear too much about them. Because they are living NORMAL lives and there aren't as many stories to report or updates to keep.... which is GOOD... we all know that when things go quiet online from heart families it usually means life is too normal to focus on CHD's and their constant quirks.<br />
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I received an email from a very generous and compassionate young man, who is 23 with Hypoplastic Left Heart Syndrome. He came across my blog and identified enough with me that he KNEW I would appreciate a note from him telling me that he is doing GREAT and has been since his Norwood Procedure. I asked him if I might share his email on my blog to spread the comfort he gave me, with other heart families out there, and he sweetly complied:<br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Hello!</span><br />
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My name is Andrew, and I found your blog, hlhsbabies and I wanted to just sent you a quick note. I'm 23, and I was born with HLHS. I'm doing amazingly well too! I had the Norwood, Glenn, and a Fontan. Dr. Norwood actually did my surgeries back in the late 80s/early 90s. </div>
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I occasionally checkout the blogosphere for people talking about HLHS and sometimes reach out to families who may have younger children who are in my position. I just want to spread some good news, and give families like mine hope- because I know for my parents there wasn't much. </div>
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I want to let people know that there is a future for children who were born with HLHS. For example, I'm almost done with university, I have a great job lined up, I exercise regularly, etc. I'm just about as normal as can be. While it might be a pain in the neck sometimes to need to check in with a few doctors once or twice a year- it's not that bad really. </div>
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So, let your kid know that he's not that different- and he can do whatever he wants. HLHS is something he'll have for the rest of his life- but he doesn't need to give up his life because of it.</div>
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-Andrew</div>
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<span style="background-color: transparent; color: #444444; font-family: Arial, Helvetica, sans-serif;">I don't know about the rest of you, but when I hear from the older HLHS's kids/adults I am so comforted to know that Jack DOES have a future ahead of him and I can sleep well knowing there are many others out there coping with the same thing. Thank you Andrew, we WILL be keeping in touch!</span></div>
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Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com7tag:blogger.com,1999:blog-3938301297480725382.post-92176001942558078712012-12-11T13:17:00.002-08:002012-12-11T13:17:51.712-08:00The Annual Once-Over.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkoSn20OHXmZumn2Y3f8L1axQd9qc0KoD2mihPV4693HdWhzJfnc0fuBslvlEsZOmL4Nt0GRkz8lqD33Gu50O13bk5o0uNE3uVUIpdBUf_iIuMCgYb_O1fBWnkkmwMLcwYChwWKh1A0o_C/s1600/IMG_1780.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/AVvXsEjkoSn20OHXmZumn2Y3f8L1axQd9qc0KoD2mihPV4693HdWhzJfnc0fuBslvlEsZOmL4Nt0GRkz8lqD33Gu50O13bk5o0uNE3uVUIpdBUf_iIuMCgYb_O1fBWnkkmwMLcwYChwWKh1A0o_C/s320/IMG_1780.JPG" width="320" /></a>It's amazing to think that we only go to Cardiology once a year. It feels as though only a few months in between visits. Jack has no qualms about going to Primary's, he loves it there. Which makes it a much more pleasant experience than the dentist....<br />
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We started off in Labs, because I wanted to get the worst part over with first. Jack new he'd be having his blood drawn but to steady his nerves he'd say in a scared, broken voice "I don't think it will be <i>that </i>bad..." It wasn't, however he hyperventilated a bit and he has bad veins anyway that only a tiny bit of blood came out. They said they'd send it to the lab and hope it was enough, but deep down, I knew we'd be back.<br />
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From there we went to Radiology and Jack is a pro at Chest x-ray's. What a pro he is at those. The technician said "Goodness, you know just what to do!" and Jack replied "...I've done this a couple times."<br />
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After Jack reviewed his clear image on the x-ray, we went to wait for our echo. I love echoes... I always have. When we were first brought to Primary's while I was pregnant I had a fetal echo. It was warm, quiet and peaceful in the echo lab and I got to watch my baby's heart beat. It's still the same today..</div>
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Jack watched "Bolt" during the echo and made it through to the END of the movie because we had to change machines 45 minutes through to get 3D images. It was wild to see them move his heart around on the screen so I could see it from whichever angle. They showed me the "money shot" of his fontan, working hard and well to keep blood flowing to this lower body.<br />
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Before the final echo was complete I got a call saying we had to go back to the lab for more blood. Not a surprise, but also not something Jack wants to hear. When I told him he about had a mental breakdown on the echo table and I reassured him that he'd get ANOTHER prize, and he made it out just fine the first time, he could do it again. He did great- but wanted to take his blood home....</div>
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Then we finally made it to Clinic, for the final tests... blood pressure, Pulse Ox and the EKG. Jack is comfortable with all of those and had great readings. His oxygen topped out at 92%. Then the Dr. came in. We are always happy to see Dr. Su. He was the doctor that sat down with me when I was 20 weeks along to describe to me the condition of my unborn baby. I trust him, I agree with his diagnosis and he is ALWAYS available to answer my questions. Jack was happy to tell him all about what he has done in the last year, including when he fell to his hands and knees on the soccer field this summer. Dr. Su told Jack to listen to his body and rest when his body wants to rest. We decided Kung Fu is a much better hobby for Jack to pursue. The results of ALL of Jack's tests left Dr. Su very happy with where we are. We talked about my<a href="http://hlhsbabies.blogspot.com/2012/06/q-as.html"> recent concern</a> about a transplant. He told me there is no reason to prepare for that. "We are still in Plan A, which was to do the three surgeries and see how well he does with them. A transplant is the 'back-up' plan, Plan B, and we haven't gotten there yet.<br />
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It's always comforting to know that Jack is doing well and that his heart has handled everything that has be thrown at it. As Jack Kung Fu-ed all over the room Dr. Su said "It's pretty amazing."<br />
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I feel the same way. Relief has settled in and we can sit back and enjoy the year ahead.Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com1tag:blogger.com,1999:blog-3938301297480725382.post-49761023890042804302012-11-25T20:09:00.001-08:002012-11-25T20:18:57.279-08:00Medical Maintenance<br />
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<i>(Jack, at Primary Children's Medical Center.</i></div>
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<i>Left is 2009 while admitted, right is 2012 during a dentist appt.)</i></div>
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I get asked about how different life is now that Jack has had his final surgery and what kind of "maintenance" we have to keep now that he is "finished*," and what differences there are as opposed to a heart healthy child his age. Obviously, I have nothing to compare him to. However, I do know when we have stepped over the bounds of "usual treatment."</div>
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For example, last year I was pulled aside by a very kind dentist, one who worked at a pediatric dental office and he had the courtesy (and candor) to set me straight.</div>
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<i>"I believe I am perfectly capable of fitting him with a crown and filling his cavities, but I must tell you I would feel more comfortable if he were in a setting where if the small chance anything were to go wrong, he would have the appropriate people and equipment around him to fulfill his needs. I'm quite certain you will find this is the case at most dentist's clinics.. "</i></div>
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What he was saying so delicately, was that no one wanted to touch a boy with such a delicate heart condition. If they were to use ANY anesthesia and something were to happen, they would rush him off to Primary's anyway- hence, we should just go to their dental clinic. </div>
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I completely agree, of course, but a regular visit to their clinic is $250. Thank heavens for Medicaid..</div>
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But they are absolutely wonderful there. The first time Jack went he walked out of the office with a silver crown and was convinced they never shot him with novacaine. They are quick, make the patient comfortable and have a way with their hands to hide most things going into the child's mouth. Not to mention the nitrous. Jack giggles the whole time in the chair. The major differences are that you are in a hospital, there is MORE equipment around you, and you are prescribed an antibiotic to take before your appointment to avoid infection. I'll take it.</div>
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Another form of maintenance that heart healthy children don't have to deal with is the aspirin. Jack takes 80mg every day to keep his blood thin and flowing freely through his complex anatomy in and outside of his heart. This makes for tricky clotting when he bleeds. There was the circumcision incident that I feel I would need his permission to tell on the world wide web, also when his baby teeth came out I had to pack some cotton in there for a bit before it finally stopped. Then there was the concussion that really got everyone concerned. Jack slipped on ice and hit his head at school. The concussion left him very bruised and he had some vomiting. So the hospital opted for him to have a CT to check for any bleed, because getting brain bleeds to stop while on aspirin can prove very difficult. </div>
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The test showed what they expected for a minor concussion, but no bleeds. I felt like fitting him for a permanent helmet and sending him back into the big, dangerous world, where his head must NEVER be touched and he can't EVER go to recess... or play dodge ball, or run....</div>
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But I supposed every parent, (heart healthy children or not,) must deal with the reality of having to send their children out into the world and risk what may happen to them. And this is only the beginning. So many heart mom's have their kids in sports or driving...or sent off to college. I'll probably be calling Jack every night for the rest of his adult life reminding him to take his aspirin.</div>
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Like Elizabeth Stone says, <i>"Having a child is momentous. It is to decide forever to have your heart go walking outside your body."</i></div>
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<span style="color: #666666; font-family: Trebuchet MS, Trebuchet, Verdana, sans-serif; font-size: x-small;"><span style="line-height: 18px;"><i>* I like to think we are finished, but as you read the previous post, that isn't necessarily the case. See <a href="http://hlhsbabies.blogspot.com/2012/06/q-as.html">http://hlhsbabies.blogspot.com/2012/06/q-as.html</a></i></span></span></div>
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Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-35971215149294282912012-06-14T21:10:00.000-07:002012-06-15T14:14:57.964-07:00Q & A's<div class="separator" style="clear: both; text-align: center;">
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When explaining Jack's condition to people who find out or ask about it, I've sort of developed a script. It's so mechanical and rehearsed it almost comes out on cruise control. It usually starts with "He has hypoplastic left heart syndrome" and that alone, leaves people dumbfounded. I skip over the actual meaning of "hypoplastic" and immediately proceed to lamen's terms, "he has half a heart."<br />
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If people are actually interested in the details, they will ask which half- which leads me down the road less traveled, using big words like "aortic and mitral valve stenosis" to which some people actually are familiar with. I usually let out a sigh of relief in this case, because I know they <i>really </i>understand the gravity of the situation and I feel more connected to the conversation.<br />
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Unlike my other speech, which goes "His left ventricle didn't develop, so he had to have a few heart surgeries to re-plumb the one good side he DOES have." Typically, the next question is "Is he OK now?"<br />
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I have a heard time with that one, I feel like saying "UM, NO, he has a two-chambered heart with a bunch of gortex stuck around it and I go into his room every night to make sure he is still breathing after he falls asleep..."<br />
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But instead, I say "Well, for now... yes he is OK."<br />
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Then, the question that will probably haunt me for as long as I live comes next:<br />
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"So will he eventually have to have a transplant?"<br />
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Suddenly I'm taken out of my body and put into scrubs and I feel like a cardio thoracic surgeon sitting across from a very nervous set of parents asking if their heart baby will need a heart transplant. The truth is I don't know, I certainly HOPE not... but I suppose it is always a possibility. It never was on my list, heart mom's know the list.. "Deliver baby, Norwood, Glenn, Fontan, BREATH AGAIN." Transplant wasn't ever an expectation. But every time I get that question I am flung into reality with the fact that it could happen.<br />
<br />
Something I hold onto was when Dr. Hawkins told me that the one side of the heart that Jack does have is a really good one; strong and healthy. I hold onto that with everything I've got and when I feel the heart beat through his broken chest I believe him, because I can feel it. But if I leave my hand there too long and feel the beat of his repaired heart I can easily become fearful.<br />
<br />
How do you other heart mom's answer these questions? I know it's a part of your life, just like it is mine. We've become very good at delivering the stories that our little heroes have created. I'm interested in how you all feel about them.Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com13tag:blogger.com,1999:blog-3938301297480725382.post-2105855809042178192012-05-09T07:52:00.003-07:002012-05-09T07:53:32.809-07:00To remove...or NOT to remove.. TONSILITIS!Jack has had strep probably 10 times in his lifetime, and he has had plenty of ear infections to compliment the strep. I myself, have horribly huge tonsils that I've been told need to be removed. And my husband had his taken out as a child. Jack was basically cursed with the humongous tonsils that cause him such grief. However, the heart doc's do NOT want him going under the knife for any other reason unless it is life threatening. (Or they are just being territorial..either way we don't argue.)<br />
<br />
Does anyone out there know of a heart baby that has had their tonsils out? How did it go? Was it scary, or risky? Did they worry about bleeding?<br />
<br />
I'm just curious. I hope he grows out of this, but each winter it is expected that we will need heavy doses of Amoxicillin (400mg/5ml) to fight off strep and help his throat out.<br />
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<i>Last time we were at the Doctor Jack did his best to act scared during the routine he is SO familiar with at the Doctor's office. (We are regulars there.) While the Doc was listening to him, Jack said "Can we hurry this along? I'm going to be late for school....)</i>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com4tag:blogger.com,1999:blog-3938301297480725382.post-79590909094627564552012-05-03T07:37:00.002-07:002012-05-03T07:38:18.153-07:00What did they do?Often I am asked, "So what did they do to fix Jack's heart?"<br />
<br />
I reply first, with "they didn't FIX his heart... they made modifications." If they were able to "fix" it, then life post Fontan would be much easier, not to mention sleeping... living and dreaming. Jack's heart is not fixed, it isn't complete, but it is sustained. A friend of mine has her baby in surgery right this very moment, receiving his Fontan. She posted this video to help explain the surgery to her family and friends. I agree with her when I say it is one of the best explanations. So if you want to know what's REALLY going on in there- watch this.<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/2zkNmRwsqfc" width="420"></iframe>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-54108925260983444522012-03-04T18:00:00.004-08:002012-03-04T18:15:21.555-08:00Heart Mom Dinner: CHD Week 2012<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFE5sBqGky0RyHpzqiDk-Uzuko4bQPVlywuisNVML-jUsDOKTBrinHVKwAdXT6DJsRFvuujArLMNaHCsGy1hHGDxIkdByAF3amS15_Z504P7_eSCpvu5hiECudJIOW3EFnwpuzwCkuGbpa/s1600/IMG_0221.jpg" style="font-style: normal; "><img style="cursor:pointer; cursor:hand;width: 267px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFE5sBqGky0RyHpzqiDk-Uzuko4bQPVlywuisNVML-jUsDOKTBrinHVKwAdXT6DJsRFvuujArLMNaHCsGy1hHGDxIkdByAF3amS15_Z504P7_eSCpvu5hiECudJIOW3EFnwpuzwCkuGbpa/s400/IMG_0221.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5716229078965714898" /></a><br />I finally had the opportunity to join my fellow heart mom's at a lovely dinner and enjoyed a night of support, awareness and reflection. We gathered at Rickenbacker's in Ogden and had a wonderful time. I got to see old friends and meet new ones, as well as ones I've known for forever but hadn't met in person. I hope everyone there had a wonderful time and those who couldn't attend will be at the next event. <a href="http://intermountainhealinghearts.org/" style="font-style: normal; ">Intermountain Healing Hearts</a> is such a wonderful organization. I don't know how I would get along without it. For those of you who haven't yet heard of it please recommend it to anyone you know who has a child or family member with a CHD, and it will change their lives.<div style="font-style: normal; "><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEins1IpGkz5lDgRa7ObpRO2TtJF_flmjRNrEZ2ZVrafLS3NZBcyRfuvYDpkKmLOi7br9hLRVj_T29wEHBg4u_0XPoOycHOMLeGsvljJvNN_udccoAmfsiJcSfMdezwzmoA2nwINfag-Aryg/s1600/IMG_0182.JPG"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEins1IpGkz5lDgRa7ObpRO2TtJF_flmjRNrEZ2ZVrafLS3NZBcyRfuvYDpkKmLOi7br9hLRVj_T29wEHBg4u_0XPoOycHOMLeGsvljJvNN_udccoAmfsiJcSfMdezwzmoA2nwINfag-Aryg/s400/IMG_0182.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5716229054023247106" style="cursor: pointer; width: 400px; height: 267px; " /></a></div><div><i>(Some of the sweet heart babies.)</i></div><div style="font-style: normal; "><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivmUjh9xeAkUFkr0ChecPHgMpzRdtnbqWwUA8R0tNsLGI13A9SvW0z1fZD8HqL0l4AAMp4FS4OBLG-8dgtas7wSVB_LjTszlPnXHqrV3drvzPsWIx95hKdX47M_fTPwl_k1K870dM9E3S8/s1600/IMG_0206.JPG"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivmUjh9xeAkUFkr0ChecPHgMpzRdtnbqWwUA8R0tNsLGI13A9SvW0z1fZD8HqL0l4AAMp4FS4OBLG-8dgtas7wSVB_LjTszlPnXHqrV3drvzPsWIx95hKdX47M_fTPwl_k1K870dM9E3S8/s400/IMG_0206.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5716229069415373202" style="cursor: pointer; width: 400px; height: 267px; " /></a></div><div><i>(Aimee Hardy- who I met while her baby was in surgery, and Jack jumped around the waiting room, exemplifying how well they can come out of the OR.)</i></div><div style="font-style: normal; "><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkTqy3mvzY6UdqOyT1MyaL_6VeYFNUVmP0EvoJ5McNgMGLQqML35P_6PVpsjbrd2Nz4m8WV5MvXyDT8KWhyrKAowznj3lBvRUhO7Lv6SJrE3vGgmesK7NnzikKQ5ElroIxldzEm4NhXiyA/s1600/IMG_0201.JPG"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkTqy3mvzY6UdqOyT1MyaL_6VeYFNUVmP0EvoJ5McNgMGLQqML35P_6PVpsjbrd2Nz4m8WV5MvXyDT8KWhyrKAowznj3lBvRUhO7Lv6SJrE3vGgmesK7NnzikKQ5ElroIxldzEm4NhXiyA/s400/IMG_0201.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5716229060299997938" style="cursor: pointer; width: 400px; height: 267px; " /></a></div><div style="font-style: normal; ">("some heart moms are strong and stand tall after dealing with all the trials of children with CHD's; and some have just had the ground disappear beneath them, their knees are buckling, and it is those still standing that have linked arms with them to help keep them from falling...")</div>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com1tag:blogger.com,1999:blog-3938301297480725382.post-22123431829302873622011-07-21T07:06:00.000-07:002011-07-21T07:18:34.041-07:00<div>When we were first told about Jack's condition at 20 weeks along in my pregnancy, we told our parents the news and spread the blanket of the fearful unknown over my family and loved ones. My Father, having already spent years in Cardiology due to his (unrelated) heart problem, called up his long-time friend and cardiologist, Dr. Don Doty. Dr. Doty told my dad right off the bat that when we went to Primary Children's we were to request Dr. John Hawkins, because "he was the best." Dr. Doty had actually trained under Dr. Norwood- of the <a href="http://en.wikipedia.org/wiki/Norwood_procedure">"Norwood Procedure,"</a> so his recommendations were taken seriously. We were privileged to meet Dr. Hawkins and have him perform the first (and the most important) surgery on Jack. The first stage of the Norwood is high risk, and only 70% survive. Dr. Hawkins was there when Jack was 5lbs 14oz, with his incredible hands, fixing Jack's broken heart. We will ALWAYS have a special place in our heart for him, and will be forever grateful. </div><div><br /></div><a href="http://mi-cache.legacy.com/legacy/images/Cobrands/DeseretNews/Photos/0000693004-01-1_182807.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 120px; height: 137px;" src="http://mi-cache.legacy.com/legacy/images/Cobrands/DeseretNews/Photos/0000693004-01-1_182807.jpg" border="0" alt="" /></a><span class="Apple-style-span" style=" border-collapse: collapse; color: rgb(51, 51, 51); font-family:Arial;font-size:12px;"><div id="obitText" class="clearfix" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; display: block; ">John Alan Hawkins, MD 1955 ~ 2011 John Alan Hawkins MD, 55, beloved husband, father, son, brother, and friend passed away on May 15, 2011 in his home surrounded by his loved ones. He fought a courageous 25 month battle with pancreatic cancer. He was born June 29, 1955 in Wichita, Kansas to Lois Price and John Powell Hawkins. John married Mary Jennifer Coleman, his soul mate and perfect companion on June 29, 1982 in Salt Lake City, Utah. He and Jenny were blessed with four wonderful children, Sarah Jane, Anne Elizabeth, John Sherman, and Mary Jessica. John graduated from the University of Kansas in 1977 Phi Beta Kappa with a degree in biochemistry. He earned his MD from the University of Kansas in 1980 where he was elected into Alpha Omega Alpha. He completed his general surgery residency at the University of Utah in 1986 and cardiothoracic trainings in 1989. He also finished a fellowship at Cincinnati Children's Hospital in pediatric cardiovascular surgery. John was on staff at Primary Children's Medical Center from 1991 until his diagnosis in April 2009. During his time at PCMC he served as the Chief of the Division of Pediatric Cardiothoracic Surgery from 1999 until 2009 and Chief of Cardiothoracic surgery at the University of Utah Medical Center from 2001 until 2009. Throughout his practice John saved the lives of countless children, served on numerous editorial boards, and held offices in multiple national organizations. John was a gifted, compassionate surgeon, a devoted husband and father, and a talented craftsman, luthier, and musician. He was a man of great humility and unwavering integrity, who was an example to us all. He will be deeply missed. John is survived by his loving wife Jenny, of nearly 29 years, and their four children, Sarah Jane (Brian Michaelson), Anne Elizabeth, John Sherman, and Mary Jessica. He is also survived by his mother Lois Price of Wichita, Kansas, brother David (Judy) of Wichita, Kansas, sister Laura of Leawood, Kansas, Mother in-law Jane Coleman, brothers in-law Dr. Michael Coleman (Anne) and Dr. Don Coleman (Margie), numerous nieces and nephews, and countless friends. John was preceded in death by his father John Powell Hawkins and father in-law Dr. Sherman Coleman. Deepest gratitude to all the doctors, nurses, and staff at Huntsman Cancer Institute and Rocky Mountain Hospice for their exceptional and compassionate care during this difficult time. At John's request a private family memorial was held. In lieu of flowers John and his family have requested contributions to: The Heart Center at Primary Children's Medical Center (100 North Mario Capecchi Drive, Salt Lake City, UT 84113), Huntsman Cancer Institute (500 Huntsman Way, Salt Lake City, Utah 84108), Camp Hawkins (1469 Wilton Way, Salt Lake City, Utah 84108 or <a href="http://camphawkins.org/" target="_new" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; text-decoration: none; color: rgb(3, 78, 131); outline-style: none; ">camphawkins.org</a> ), Coaches vs. Cancer Believe Campaign (4421 S. Williamson Lane, Spokane, Washington, 99223), or a charity of your choice. Arrangements entrusted to Starks Funeral Parlor. Online condolences may be offered to the family at <a href="http://www.starksfuneral.com/" target="_new" style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; text-decoration: none; color: rgb(3, 78, 131); outline-style: none; ">www.starksfuneral.com</a><br /><br /></div><div id="obitPublished" class="clearfix" style="margin-top: 10px; margin-right: 0px; margin-bottom: 10px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; display: block; font-size: 11px; "><div style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; float: left; font-weight: bold; ">Published in Deseret News on May 22, 2011</div></div></span>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com1tag:blogger.com,1999:blog-3938301297480725382.post-20869929637128825742011-01-18T11:53:00.001-08:002011-01-18T12:13:09.875-08:00SOS/SSI<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAqx21FPQ_oXdiV-MWg0ZjSt-zSZ2lUt7EM5bRU4U1gP2EtGOKq0awbP3cWI3CygC8hmSqWJp1ThIa-aGLGyGmXHkfBZCuAK97erYyWzwhbKrgnlEx2BtUUs3IVjU-IBgMt_vX9aSwfwQg/s1600/ssi.JPG"><img style="cursor:pointer; cursor:hand;width: 253px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAqx21FPQ_oXdiV-MWg0ZjSt-zSZ2lUt7EM5bRU4U1gP2EtGOKq0awbP3cWI3CygC8hmSqWJp1ThIa-aGLGyGmXHkfBZCuAK97erYyWzwhbKrgnlEx2BtUUs3IVjU-IBgMt_vX9aSwfwQg/s320/ssi.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5563621539896689154" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://www.ssa.gov/history/pics/ssi91.JPG"><br /></a>After lots and lots and lots of work, I think we have actually gotten Jack approved for SSI. Dealing with government agencies is something I think people should actually get paid to do. I think there should be people out there that know the ins and outs of these facilities, able to find the fastest track to getting things done, the right numbers to call (and know the RIGHT times of the day and week to call them...) and know where all the offices are, suite numbers, hours of operation and the quickest way to get to them.<div><br /></div><div>I have got a good hold on Utah, state agencies are so tricky, but I have spent years figuring it out. I know what to say when starting a "chat" with the Dept of Workforce Services. I know they need my case number, social security number, phone number and address. THAT'S RIGHT- THEY DON'T NEED MY NAME. It is an arduous feat to maintain our benefits through the state. It is especially complicated because of Josh's work. We are in monthly contact with them faxing in reports of income and changes. It is a lot of work, and if there WERE someone who knew the ins and outs then I would hire them to maintain Medicaid for Jack. Then I would hire them to maintain our federal benefits with Social Security.</div><div><br /></div><div>I'm not even sure how it is going to work, and now that Jack's surgeries are all complete, the funds will just be used to keep him alive and thriving (clothes, food, education.) But being that the SSI fund is quickly depleting, who knows how long he will have it.</div><div><br /></div><div>My advice to other parents out there with children that have CHD's or any other medical need, do this SOONER than LATER. Honestly this could have saved lots of financial woe's that fell upon me and my husband over the last 5 years and possibly have changed our situation for the better. I'm grateful for everything, the insurance we DID have, while we had it, the patient accounting department's of the hospitals, and of course the fact that Jack is doing well. But not knowing what I was getting into with my first born has certainly taken its toll, and I would like to help other parents out there get better control of their lives when the blessing of high maintenance children come into their lives.</div><div><br /></div><div>Once the SSI program is clearer to me, I'll share more. But they didn't tell me much, other than we were approved. So I don't even know what I'm in for (again.) Stay tuned.</div>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com4tag:blogger.com,1999:blog-3938301297480725382.post-37012499978436519252010-10-18T13:47:00.000-07:002010-10-18T13:49:09.423-07:00WOO!<div style="text-align: center;"><span class="Apple-style-span" style="font-size: x-large; "><b><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="color:#FF9900;">JACK </span></span></b></span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-size: x-large;"><b><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="color:#FF9900;">IS </span></span></b></span></div><div style="text-align: center;"><span class="Apple-style-span" style="font-size: x-large;"><b><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="color:#FF9900;">ON </span></span></b></span></div><div><div style="text-align: center;"><span class="Apple-style-span" style="font-size: x-large; "><b><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="color:#FF9900;">MEDICAID!!</span></span></b></span></div><div><br /></div><div>(Yay!)</div></div>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com1tag:blogger.com,1999:blog-3938301297480725382.post-28454582332178078192010-09-09T11:29:00.000-07:002010-09-09T11:36:24.238-07:00PARENTING 101<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicA-8U1TVzXxFFm87OMWzyCZB0oUR3wpFJS4ToyzrBrUkZ3NGQVwskwh0YtNdk1WnrzQncBLOfjgvaWcGV_47PfELGQUFiWWGHYM6N8zGWYuUn7kRRO6KAJrr1-5JNiexWaqTkWGxlwesK/s1600/mine.jpg"><img style="cursor:pointer; cursor:hand;width: 258px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicA-8U1TVzXxFFm87OMWzyCZB0oUR3wpFJS4ToyzrBrUkZ3NGQVwskwh0YtNdk1WnrzQncBLOfjgvaWcGV_47PfELGQUFiWWGHYM6N8zGWYuUn7kRRO6KAJrr1-5JNiexWaqTkWGxlwesK/s320/mine.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5514984439100070018" /></a><br /><div><br /></div>In the last three days, Jack has hit a ton of kids, and BIT one of them. He knows it's wrong, he knows it hurts others and he still acts on his emotions. Being an only child, he doesn't understand that not everything is HIS, and you must SHARE and other kids aren't competition- they are friends.<div><br /></div><div>I try to talk with him, and be calm. I've tried yelling, to scare it out of him. I've tried taking things away. But it is still happening.</div><div><br /></div><div>If there is ANYONE out there with a similar problem, or who has had this problem in the past and overcome it, please- pretty please, share your secret. I'll take any advice. I hate being the mom the teacher has to pull aside to tell her her son had a "bad day" and "made some mistakes."</div>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-59604157976006404912010-05-10T20:33:00.001-07:002010-05-10T20:44:49.931-07:00Good memories of rough times..I am trying to organize the first 5 years of Jack's life in a sort of journal-type-book-thing, that he can perhaps take with him to school for show and tell to help explain why he is so dang special. But I have sadly been unable to track down some important pictures involving the <a href="http://hlhsbabies.blogspot.com/2008/01/stage-2-glenn.html">Glenn</a>, his second surgery. However, I came across this video, and the most amazing part of this is that he is only FOUR days out of heart surgery. His spirit shows through so much, and his desire to just be happy and have fun is still with him. But even though he is hooked up to things and has a huge incision on his chest, this video makes me smile.<div><span class="Apple-style-span" style=" white-space: pre; font-family:Arial, Helvetica, sans-serif;font-size:12px;"><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/UwfPjybsqxc&hl=en_US&fs=1&"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/UwfPjybsqxc&hl=en_US&fs=1&" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object></span></div>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com6tag:blogger.com,1999:blog-3938301297480725382.post-89108680901528211182010-04-21T12:12:00.000-07:002010-04-21T12:13:39.234-07:00Jack's Make A WishMAW posted Jack's story on their blog.<div><br /></div><div>You can view it here:</div><div><br /></div><div>http://utah.wish.org/2010/04/16/jacks-walt-disney-world®-resort-wish/</div>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com0tag:blogger.com,1999:blog-3938301297480725382.post-55869749935825921422010-03-31T21:06:00.000-07:002010-03-31T21:17:24.481-07:00DISNEYWORLD..... the first and last time we'll visit ;)<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4bPT1Qi15iElfTfLpwO6uESf9u7URa4T2MYQkxHrlsUWc-jZZZO2Z5x6M67iw6x44-4Y74husaTR_TR7DcXkl0MHJ32v9ol7tpRGjnPnociWozTAhUtglflivg-eFt0MG3E61vwVNDU9K/s1600/family+DW.jpg"><img style="cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4bPT1Qi15iElfTfLpwO6uESf9u7URa4T2MYQkxHrlsUWc-jZZZO2Z5x6M67iw6x44-4Y74husaTR_TR7DcXkl0MHJ32v9ol7tpRGjnPnociWozTAhUtglflivg-eFt0MG3E61vwVNDU9K/s320/family+DW.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5455018372824663138" /></a><br />Honestly, who knows. But we were so spoiled on this trip by Make A Wish, that if we were to ever return, Jack would ask "why do we have to wait in lines?" or "why aren't you buying me every toy I ask for?"<div><br /></div><div>It was truly incredible. I posted each day on my family blog, so if you are interested in living a week in Florida vicariously through us, please click away.</div><div><br /></div><div><a href="http://lisascrazydreams.blogspot.com/2010/03/wednesday-march-17th-2010.html">Day One</a></div><div><br /></div><div><a href="http://lisascrazydreams.blogspot.com/2010/03/thursday-march-18th-2010.html">Day Two</a></div><div><br /></div><div><a href="http://lisascrazydreams.blogspot.com/2010/03/friday-march-19th-2010.html">Day Three</a></div><div><br /></div><div><a href="http://lisascrazydreams.blogspot.com/2010/03/saturday-march-20th-2010.html">Day Four</a></div><div><br /></div><div><a href="http://lisascrazydreams.blogspot.com/2010/03/sunday-march-21st-2010.html">Day Five</a></div><div><br /></div><div><a href="http://lisascrazydreams.blogspot.com/2010/03/monday-march-22-2010.html">Day Six</a></div><div><br /></div><div><a href="http://lisascrazydreams.blogspot.com/2010/03/tuesday-march-23-2010.html">Day Seven</a></div>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com2tag:blogger.com,1999:blog-3938301297480725382.post-39894318938716062812010-02-02T09:00:00.001-08:002010-02-02T12:59:20.985-08:00Here's the Deal.<span class="Apple-style-span" style=" color: rgb(138, 138, 138); font-family:Arial, Helvetica, sans-serif;font-size:12px;"><p style="margin-top: 0px; margin-right: 0px; margin-bottom: 2em; margin-left: 0px; text-align: justify; line-height: 26px; "><span class="Apple-style-span" style="color:#333333;">As of 4 hours ago we were getting ready to hop a plane tomorrow morning and head to Florida for Jack's Make A Wish trip. However- a chain of events led us to canceling the trip, upping Jack's </span><span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="Apple-style-span" style="color:#333333;">med's</span></span><span class="Apple-style-span" style="color:#333333;"> substantially, and staying home. Here's a summary/timeline of the last week:</span></p><div><ul style="margin-top: 0px; margin-right: 0px; margin-bottom: 2em; margin-left: 0px; text-align: justify; line-height: 26px; "><li><span class="Apple-style-span" style="color:#333333;">We finished Jack's antibiotic's that he was on for the Strep throat we discovered 2 weeks ago</span></li><li><span class="Apple-style-span" style="color:#333333;">Jack started getting sick again one week ago, cough, fever, chills</span></li><li><span class="Apple-style-span" style="color:#333333;">We took Jack in on </span><span class="blsp-spelling-error" id="SPELLING_ERROR_1"><span class="Apple-style-span" style="color:#333333;">friday</span></span><span class="Apple-style-span" style="color:#333333;"> and the </span><span class="blsp-spelling-error" id="SPELLING_ERROR_2"><span class="Apple-style-span" style="color:#333333;">dr</span></span><span class="Apple-style-span" style="color:#333333;">. saw no signs of a bacterial infection, and the strep test was negative</span></li><li><span class="Apple-style-span" style="color:#333333;">Dr. asked us to keep him updated on Jack's condition over the weekend</span></li><li><span class="Apple-style-span" style="color:#333333;">By Monday (today), Jack had not improved and the Dr. called us to bring him in</span></li><li><span class="Apple-style-span" style="color:#333333;">Dr. said we should get a strep test just to rule it out, but it came up positive</span></li><li><span class="Apple-style-span" style="color:#333333;">Dr. also said he was concerned about Jack's lungs, as he could hear something on the right side (Jack's "bad" side) and suggested we go to </span><span class="blsp-spelling-error" id="SPELLING_ERROR_3"><span class="Apple-style-span" style="color:#333333;">Primary's</span></span><span class="Apple-style-span" style="color:#333333;"> for an x-ray</span></li><li><span class="blsp-spelling-error" id="SPELLING_ERROR_4"><span class="Apple-style-span" style="color:#333333;">Primary's</span></span><span class="Apple-style-span" style="color:#333333;"> did the x-ray, I tried to read it, find someone to read it, couldn't, and we went home to wait for the results</span></li><li><span class="Apple-style-span" style="color:#333333;">On the way, a cardiologist called to tell us there was some build up that could possibly be pulmonary edema, and that there was in fact a small pleural effusion</span></li></ul><div><span class="Apple-style-span" style="color:#333333;">So we are now back up to 3X daily </span><span class="blsp-spelling-error" id="SPELLING_ERROR_5"><span class="Apple-style-span" style="color:#333333;">lasix</span></span><span class="Apple-style-span" style="color:#333333;">, 1X daily </span><span class="blsp-spelling-error" id="SPELLING_ERROR_6"><span class="Apple-style-span" style="color:#333333;">aldactone</span></span><span class="Apple-style-span" style="color:#333333;">, and his new antibiotic for the returning strep throat.</span></div><div><span class="Apple-style-span" style="color:#333333;"><br /></span></div><div><span class="Apple-style-span" style="color:#333333;">There is some good news:</span></div><div><ul style="margin-top: 0px; margin-right: 0px; margin-bottom: 2em; margin-left: 0px; text-align: justify; line-height: 26px; "><li><span class="Apple-style-span" style="color:#333333;">Jack is home, we aren't in the hospital with another chest tube</span></li><li><span class="Apple-style-span" style="color:#333333;">It's raining cats and dogs in Florida</span></li><li><span class="Apple-style-span" style="color:#333333;">We can watch the season premiere of LOST at the same time everyone else does</span></li><li><span class="Apple-style-span" style="color:#333333;">Make A Wish is allowing us to reschedule his trip</span></li></ul><div><span class="Apple-style-span" style="color:#333333;">It's incredible that Make A Wish is so </span><span class="blsp-spelling-corrected" id="SPELLING_ERROR_7"><span class="Apple-style-span" style="color:#333333;">accommodating</span></span><span class="Apple-style-span" style="color:#333333;">, I mean we called about 12 hours before our departure time and told them the whole thing is off. I'm so glad that they are understanding and allowing us to try again.</span></div><div><span class="Apple-style-span" style="color:#333333;"><br /></span></div><div><span class="Apple-style-span" style="color:#333333;">The hardest part will be explaining to Jack tomorrow, why we aren't on our way to Disneyworld.</span></div><div><span class="Apple-style-span" style="color:#333333;"><br /></span></div><div><span class="Apple-style-span" style="color:#333333;">Thank you for all those that listened when I needed to talk to you and thank you to Make A Wish. Today sucked. But Jack is here and in good spirits, which is all that really matters.</span></div></div></div></span>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com3tag:blogger.com,1999:blog-3938301297480725382.post-64744466056701465352010-01-29T15:28:00.000-08:002010-01-29T15:29:42.103-08:00Westland Elementary SchoolA couple of weeks ago we found out that Jack's Make-A-Wish was being sponsored by a local elementary school. They had seen a picture of Jack, knew a little bit about him, and learned his favorite things. For weeks the school raised money, based only on the flyer posted around the school. The administration asked if we could come to an assembly where they could present the check, and the kids could all meet Jack.<div><br /></div><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwZM59llMe5eYrfyEgHuDLu3t8IUaqR1mwj9XoXMkxFRyKtQMzDyqk7KNrvdrjPFZPjRyEwganivu4OJFGqEQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><div>I was asked to speak a little bit about Jack's story. I did my best to summarize our eternity that has occurred over the past 4 and a half years, and make it so elementary school students would stay interested. Jack just had to be there. When he walked through the doors it was though royalty had entered Westland. The student council shook his hands and gave him hugs, and on our way to the Gym all the kids in line would give him "five" and tell him hello. Everyone was crowding around him, asking him questions about Lightning McQueen, and Disneyworld.</div><div><br /></div><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzBA73ysuZLku0Oehqwf4mC74B8dEifNUNswCEJ0NHtlllBqe0-EEH7Tubn1W9c-ilfFHlAxXWHnRELvsSw' class='b-hbp-video b-uploaded' frameborder='0'></iframe><div>Jack was LOVING IT. He would just look into all the eyes of these strangers and smile. It was as though he truly felt gratitude in his heart. (We were particularly proud because he'd had problems with being nice to strangers lately...) He even volunteered to show off his scars, and was very proud of them.<div><div><br /><div>After I spoke, we showed a slideshow of picture from Jack's birth to today, including some of the serious shots of him right after surgery, and the kids' response was so genuine and heartfelt, you could feel it in the whole room.</div><div><br /></div></div></div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlNLkjG7u6QUwhG2_x5xcVVdqh6lKptN1sIidVhrJX7Yys-hOVny8zcauT71W0WTjNLVlv7B2P814rEWEIzzubpc3rBan90xZGS5E_Ft4uTnZqDhqX813lJrYfzbYnp_H46E1spj095IWb/s400/heart+pic.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5432301411169987490" style="float: right; margin-top: 0px; margin-right: 0px; margin-bottom: 10px; margin-left: 10px; cursor: pointer; width: 400px; height: 267px; " /><div><div><div>As a whole they collected over $1500 to help send our family to Disneyworld. It was so humbling to think of all these kids that were so happy that they were a part of this. It really makes you think about how special little kids are, and how they can be examples to us. There were a few children that brought gifts for Jack, out of the goodness of their hearts; they bought him CARS toys, Oreo's, Mater trucks, coloring books.... it was incredible. I'm so glad we captured all of these videos, (thanks to Nat for the FLIP and Mom for the filming..) because later on in life he'll be able to see how special he was to all these little kids at Westland Elementary school.</div><div><br /></div><div>We hope that after we go on our trip, we can return to Westland to share with them the fun that we had, BECAUSE of them- and keep them updated on Jack's condition. I'm currently working on gifts for all 616 students....</div></div></div></div></div>Lisa Marie Trenthttp://www.blogger.com/profile/17908162137253786020noreply@blogger.com1