tag:blogger.com,1999:blog-28908134830414972422024-03-19T02:42:36.827-07:00Our HLHS JourneyKathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.comBlogger160125tag:blogger.com,1999:blog-2890813483041497242.post-56077073288509980142023-02-28T11:44:00.000-08:002023-02-28T11:44:40.069-08:0012 <p style="text-align: center;"> So we have a 12 year old ! </p><p style="text-align: center;">Jasiu turned 12 this past weekend doing something he absolutely loves Skiing! He said it was the best birthday yet ! (for us they are all THE BEST)</p><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVq6S2s65z_TDeDNjmTQMgsO28LZ38be2p1iEaON2nJFYLwcArjgM1BdVSMfDKcUBsSmuc22Pe1hupOX_Y9J6wiKSPBg0iL2BJ9Tx8U73h-NQWTclQXE2Dufr_9T_V1VVhxbmpAjkca3DKGrkMcYDRWhH26-Xe539jlbTz-hMB8sslZeA7STuafQ0b/s2048/Blog%2012-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="946" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVq6S2s65z_TDeDNjmTQMgsO28LZ38be2p1iEaON2nJFYLwcArjgM1BdVSMfDKcUBsSmuc22Pe1hupOX_Y9J6wiKSPBg0iL2BJ9Tx8U73h-NQWTclQXE2Dufr_9T_V1VVhxbmpAjkca3DKGrkMcYDRWhH26-Xe539jlbTz-hMB8sslZeA7STuafQ0b/w296-h640/Blog%2012-1.jpg" width="296" /></a></div><div><br /></div>We have not had an update on here in a long time... I mean I have a draft of 8! and 10! and have not had time to finish them. So a lot has happened since 2018 , our last post, but nothing heart related other than our routine yearly appointments. We truly have been so lucky to be able to visit the Advocate ONLY once a year for a quick check up. In the past 5 years Jasiu has grown up so much and yet as most 12 year olds we still have to remind him to take his meds almost daily and as much as I want him to take responsibility a little part of us wants to be able to take care of him for ever. He is still on only Lisinopril, aspirin and a multivitamin, a regimen he is so used to he can get them ready in his sleep for the week. <div><br /><div><br /></div><div><b>This year marks a very large milestone in April, it will be 10 years since his Fontan, his third open heart surgery. We can't believe it ~ 10 years~</b></div><div><br /></div><div>At our heart center, this also means it's time to do a bit more than just an annual check up, the doctors told us this last year and we had almost a year to prepare and yet it still makes us so nervous, us as parents and Jasiu the most. For anyone who knows this kid, his mouth never shuts up, he can talk your ear off and has so many ideas and questions and when it came to this upcoming summer, it is no different. He still tends to forget it's coming up, but when he does, he has questions that are so hard to answer. We will handle each one as they come and try to make him most comfortable and not scared as possible. </div><div><br /></div><div>Our cardio appointment is early June, then they will know more and schedule an MRI, Heart Cath (possibly inpatient if any intervention needs to be done) and I think some other testing. All will be determined at the June appointment. The carido team said we are in good shape and its not urgent to do all this in the summer so that he doesn't miss school and has the summer to recuperate from the invasive Cath and just emotional roller-coaster. </div><div><br /></div><div>Until then, we pack up our ski gear for the season and start planning our warm weather Spring Brake vacation to take our minds off of what is coming up. I hope to be able to update more as we go through the next few months. </div><div><br /></div><div><div style="text-align: center;">Our last weekend trip Skiing</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj14HsK8NRkvjkPOwJc1ImaECYZMUbnrjp6uijHgQEiVwcN3vFqoc4GzMM9XBb_BcfsLBi5a9X1g9Fj3sLexNQy4UWtiCzNivoy-V7t4uN0fvyE7lkqNuUVtAophp_AJPqi3fcbdslLuUOmd8phlRY3ZEZicX_qZteYQ_gS5CXys-YPZLpluSJISUk/s2048/Blog%2012-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="946" data-original-width="2048" height="148" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj14HsK8NRkvjkPOwJc1ImaECYZMUbnrjp6uijHgQEiVwcN3vFqoc4GzMM9XBb_BcfsLBi5a9X1g9Fj3sLexNQy4UWtiCzNivoy-V7t4uN0fvyE7lkqNuUVtAophp_AJPqi3fcbdslLuUOmd8phlRY3ZEZicX_qZteYQ_gS5CXys-YPZLpluSJISUk/s320/Blog%2012-2.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">In 2021 we visited Pikes Peak in Colorado and John had the best O2 sats of all 5 of us, here he is at 11K feet elevation. </div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPv4Cko6zxbLQSAwaHoxlA1cCNwvl0Rv53GfIjw6FgUc0FvZ-n1r-reB_6-raM9nNW30GeHl6265KiHYT3KmFLii9DfYw7xTMMlgfeGOHYfnsxI9kLx-JpnicWbIH3DGXroNNUrLS5W9NLNNcXug-VlhEK1i7doQfXULRu1nVkKSCDrCr8im8XvuAt/s960/Blog%2012-3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="540" data-original-width="960" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPv4Cko6zxbLQSAwaHoxlA1cCNwvl0Rv53GfIjw6FgUc0FvZ-n1r-reB_6-raM9nNW30GeHl6265KiHYT3KmFLii9DfYw7xTMMlgfeGOHYfnsxI9kLx-JpnicWbIH3DGXroNNUrLS5W9NLNNcXug-VlhEK1i7doQfXULRu1nVkKSCDrCr8im8XvuAt/s320/Blog%2012-3.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">In 2021 it was the last Team Jasiu 5K (virtual)</div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7dpXEme8qOyIJTobJfZcLyvdc1bP6jgOX6m2JjCa9bDO_BoEAXmO34K6w-oL5zwNxm_8gaIZMyo3nbRRu6ZmsZiHxk4yP-LKa1UhQ1bv5yqP8PszNbe4snFQnu81CTsCJmyetbDn-cfrriI24IY-UQmXfI_innkcbVRfy4j_qOZdAE3PDzlMkFxIs/s960/Blog%2012-4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7dpXEme8qOyIJTobJfZcLyvdc1bP6jgOX6m2JjCa9bDO_BoEAXmO34K6w-oL5zwNxm_8gaIZMyo3nbRRu6ZmsZiHxk4yP-LKa1UhQ1bv5yqP8PszNbe4snFQnu81CTsCJmyetbDn-cfrriI24IY-UQmXfI_innkcbVRfy4j_qOZdAE3PDzlMkFxIs/s320/Blog%2012-4.jpg" width="176" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">In 2020 We got ourselves a dog (John was 9)</div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMCc0gwJRX4eb2ERocZW0vOUinAOK1yqPrUlaAIxxpFuCo_-hEQaaZCqbjVUiKxHp84U_W4mL9zgn-7Ej62HzBbUzlM0rl9-zC4q4GZbfh6BowUTuucFiFaxIFYu-ppqqnO5PINuNpLBYQeC8JiXJmVDKz1Sp-gKIIb5-fhs7b-ehi5-Y9vAPcBEMu/s960/Blog%2012-5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMCc0gwJRX4eb2ERocZW0vOUinAOK1yqPrUlaAIxxpFuCo_-hEQaaZCqbjVUiKxHp84U_W4mL9zgn-7Ej62HzBbUzlM0rl9-zC4q4GZbfh6BowUTuucFiFaxIFYu-ppqqnO5PINuNpLBYQeC8JiXJmVDKz1Sp-gKIIb5-fhs7b-ehi5-Y9vAPcBEMu/s320/Blog%2012-5.jpg" width="240" /></a></div><div><br /></div><div style="text-align: center;">In 2019 we also visited Give Kids The World to visit Jasiu's Star from Make-A-Wish</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLf3BZED3HcjsGX1FATVfJfZmwWKssh5hewr_98SD738mUBYuxxDut_xGjLNzzKuo0i0BjdnIfok6u3AmUlUlSr2VLNL3U2U5YL7DOB28u-c1nVWMrjIS0LA89ZVLQg5ofG5n3_vvCBW7JlPKmhYqwfrj-naXvL68yHVvdGNrnOjJn9JQQFksC3XHc/s960/Blog%2012-6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLf3BZED3HcjsGX1FATVfJfZmwWKssh5hewr_98SD738mUBYuxxDut_xGjLNzzKuo0i0BjdnIfok6u3AmUlUlSr2VLNL3U2U5YL7DOB28u-c1nVWMrjIS0LA89ZVLQg5ofG5n3_vvCBW7JlPKmhYqwfrj-naXvL68yHVvdGNrnOjJn9JQQFksC3XHc/s320/Blog%2012-6.jpg" width="240" /></a></div><div><br /></div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijUg4Qwc48lFBarNcrsQTNeeqrPREuKh9pMYfJnVLphpMtGpwbyWBCc_QtccLgtHdSTTwrOHbAzU5zWQls1eWOuDY8aV_9bmTCR-PzNvfD2hj_4SYFiUw86yDxG3Qk6Kw3h7lIjs3NNMUrN4FHvHGtG5MJlrH8P33V1KbyE2s1We8ggSjcaVfu5cMa/s960/Blog%2012-7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="641" data-original-width="960" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijUg4Qwc48lFBarNcrsQTNeeqrPREuKh9pMYfJnVLphpMtGpwbyWBCc_QtccLgtHdSTTwrOHbAzU5zWQls1eWOuDY8aV_9bmTCR-PzNvfD2hj_4SYFiUw86yDxG3Qk6Kw3h7lIjs3NNMUrN4FHvHGtG5MJlrH8P33V1KbyE2s1We8ggSjcaVfu5cMa/s320/Blog%2012-7.jpg" width="320" /></a></div><div><br /></div><div><br /></div><div style="text-align: center;">In 2019 our Team Jasiu raised a lot of donations for RMH, they gave us a sign on the route</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiyd6zVwdydmg8NnXznaHcDBHg0r3bgj3BgWOSE3rik2dNfgtXxAajkC0rA-M2JrKT0OkN3ABIkDR7SAzS85ZzF9rzybFUtJzz1VWR9DSSAYH1gVmDhGR0RDdvfs8GvxDUyu94LICnY54UN-Vk-WEt52gMHqBRqVAwGv0cWeCi02TWfmqVx05w6HMA/s960/Blog%2012-8.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiyd6zVwdydmg8NnXznaHcDBHg0r3bgj3BgWOSE3rik2dNfgtXxAajkC0rA-M2JrKT0OkN3ABIkDR7SAzS85ZzF9rzybFUtJzz1VWR9DSSAYH1gVmDhGR0RDdvfs8GvxDUyu94LICnY54UN-Vk-WEt52gMHqBRqVAwGv0cWeCi02TWfmqVx05w6HMA/s320/Blog%2012-8.jpg" width="320" /></a></div><div><br /></div><div><br /></div><div style="text-align: center;">Skiing in 2018</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPRpdaIElL36GzoTFbIl6kC5F7uypLAufp9WYUNXrJr9hg72RzoI2GML7HnVhuRzyYXkI09Ka5FWWkyM-1isjsjmw13-5b1BJCz8TR63cMcXug1Xbv0U8aRsza-NF2T5QDmFWcbI8H_97ss6gTZUqJ4tbSvxs-Kmbv1J5lT0J2k6EpJTSrCXuJNuit/s960/Blog%2012-9.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Skiing in 2018" border="0" data-original-height="960" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPRpdaIElL36GzoTFbIl6kC5F7uypLAufp9WYUNXrJr9hg72RzoI2GML7HnVhuRzyYXkI09Ka5FWWkyM-1isjsjmw13-5b1BJCz8TR63cMcXug1Xbv0U8aRsza-NF2T5QDmFWcbI8H_97ss6gTZUqJ4tbSvxs-Kmbv1J5lT0J2k6EpJTSrCXuJNuit/w176-h320/Blog%2012-9.jpg" title="Skiing in 2018" width="176" /></a></div><br /><p style="text-align: center;"><br /></p></div></div>Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-41469354636788526062018-08-29T13:48:00.002-07:002018-08-29T13:48:43.666-07:002018 Summer Update <strong><u>Cardio appointment -</u></strong> <br />
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First things first - John had a great annual cardiology appointment. It was quick. Echo, EKG were all good and unchanged, which is great. We did not have to have labs or EKG because last year's were great and now Dr. H. wants to do them every other year. I prepared Jasiu for a blood draw and of course promised a Target run after the appointment and there was no labs !!! "But we still get to go to Target Right?!?" inquired John. (this one is easily bribable) Quick and done and to Target we went and I could enjoy the summer with a little bit of ease, as usual. <br />
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<u><strong>Our Summer -</strong></u> <br />
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School was out and the kids couldn't be happier. <br />
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Our summer seemed short as always, but there was no shortage of fun. This year we put up a nice pool for the kids. It was a temporary type of pool, but with a pump and a ladder to get into, so it was much better than the blow up pools they had in the past few years. John really loves the water, he would go in even on the coldest of summer nights and swim, jump and splash all day long. The kids enjoyed it so much we are thinking of putting in a large heated pool next year, but that is TBD... for now. <br />
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We start off the summer as usual with the Running for Hope 5K ! We had a great turn out and I loved seeing our friends and family support our great hospital that has and is continuing to support and help us on every step of this journey. We love Team Jasiu ! Thank you for being with us !<br />
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We went camping, to Indiana lake house and our big trip was to Tennessee. I was wondering how John would do with the higher altitude and he did just fine. His endurance was great and was as active as ever. <br />
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John also got brand new glasses this summer. I have noticed John was sitting closer to the TV on the floor instead of the couch and we decided to bring him along for an eye doctor visit that we go with Emily every year (who has been wearing glasses since Kindergarten). Guess what ? John is now a proud owner and has been inducted into the Glasses wearing club. Let me tell you, it's not easy to transition to glasses, we lose them about 100 times a day... but he's getting used to it.<br />
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This summer was also our very fist ER visit ! It was actually nothing heart related, rather boy related, fast and pretty clumsy boy related. John split his ear open on our stairs when he was running around and there was blood everywhere... Turns out that they don't like to do stiches on the ear if they aren't absolutely necessary because the soft tissue would be more deformed from the stiches so they decided to glue it. It was determined that he did not need a CT or head scan since the bruise was not super large and he did not lose consciousness. We stopped our aspirin for a few days while the ear healed. He was up and running the next day ... Boys will be boys. It wasn't fun and I as always thought of all the bad things that could have happened but all is good. I'm actually surprised it took us 7 years for this type of injury. <br />
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<tr><td class="tr-caption" style="text-align: center;">Let me tell you this looked MUCH WORSE than it appears on a picture !</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Just chillaxing in the ER... <br />
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<strong><u> 2nd Grade -</u></strong> <br />
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Now that summer is over we are off to 2nd Grade !!! This mama can't believe it that we have a 2nd grader - a Middle Schooler - in our district. This is the first time the John and Emily are in the same school, though only for one year. Emily started 5th grade and is super excited for her last year in middle school before she is off to Jr. High. We wish every one a safe Back to School. <br />
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-26960797922587702642018-05-30T20:42:00.000-07:002018-05-30T20:42:22.717-07:002017/2018 School Year RecapThe 2017/2018 school year is coming to a close and we have put 1st grade in the books. <br />
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Another milestone crossed - off to middle school he goes !</div>
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In our school district pre-K, K and 1st grade is a separate school from the 2-5th graders, which means Jasiu is now in the same school as Emily for one year while she goes through 5th and then moves on to Jr. High, which is in another school. This means that next school year both kids will be in the SAME school. This is huge for this mama. </div>
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First grade went great for John, we now know he is excelling in math and it comes quite easily for him, even his timed addition and subtraction facts (with some extra practice at home) has been awesome. He has not struggled with the clock, fractions or anything particularly, though he could benefit from slowing down and organizing his work a bit more. His penmanship could use some work, but we are all working on that.... aren't we. Reading and writing are his weaker areas and he does not enjoy reading as much as his sister. As creative as he is, he does not want to put pencil to paper to write and express his creativity in writing. Bummer. However, this too we will work on over the summer. He does extremely well on his standardized tests and for a kid who was on bypass three times as a baby, that is awesome. Sometimes mama has to remind herself to be patient as we do homework .... (let's just leave it at that... teaching is not my calling... ) Favorite subject, John will say is gym followed by recess and math is a close third. John enjoyed his classmates and generally likes/ tolerates school. </div>
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This winter we went skiing a few times and this year Jasiu really liked it, didn't seem to be too tired and went on the bigger bunny hill instead of the nearly flat one. He said he is ready for the large lift but I am not ready for him to go on that yet, maybe next winter. Emily went on the large hill green trail this year for the first time and she is 9. Here is our little skier. </div>
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The last post said we are looking forward to LEGOLAND in October 2017... well it took us until March 2018 to finally plan it and go, so we took a week off of school and went to Florida early this spring. We took our homework with us and enjoyed some sunny FL, while Chicago had temps in the 30's. Jasiu was in LEGO heaven. He loved every aspect of it, he loved the room, the LEGO play area, the cafeteria, theme park and the LEGO figures walking around (though we didn't see as many as we thought we would). After LEGOLAND we went to Treasure Island FL to the beach for some relaxation after LEGO mayhem. It was a great vacation for all of us. Next stop Gatlinburg, TN in July, stay tuned. </div>
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Next week we have our annual cardiology appointment. I will post a quick update as soon as I have time. </div>
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At home and school John has been feeling great cardio wise. He is stronger than ever, now that the weather has gotten really nice, the kids have been on their bicycles and I have been running behind them with Dominik, now 2, in the jogging stroller. I'm proud to say John can bike ride 3 miles with no problem, except for the large hill on our way home, but even I can't bike ride that hill all the way up. We did the 3miles at least 4 times in two weeks. Emily can almost get all the way up that hill by the way. Speaking of bike riding, this spring is the year that John finally learned to ride 2 wheels. Since dad was suffering from a knee problem, mom taught John how to ride the big two wheel bicycle. It only took him about 3 days to get the full swing of things. Now this summer mama can get in shape while running after the older two on their bikes. We have also been really impressed with John's upper body strength. apparently he has been practicing monkey bars at school and showed me how he can do them every time we go to the park. I am attaching a video to this post for all of the readers to see. This too is proud mama moment. </div>
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Well, we bid 1st grade farewell and off on summer vacation we go. </div>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-34012073370090915922017-07-25T22:15:00.001-07:002017-07-25T22:15:14.712-07:00Cardio Update 2017Cardio visit this year was June 30th and this mama is a month behind on the update. <br />
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We are happy to report that our appointment went smoothly. We started out with labs this time, which never happened but this also means that we had the blood drawn first. We (Jasiu) was quite a bit concerned and did not like it at all, however it allowed us to get lab results right after our appointment. Well getting blood drawn is never fun but Jasiu did awesome for a 6 year old. He shed a few tears, but cheered up as soon as we left the lab. He had fun telling everyone he is going to LEGOLAND soon (October hopefully) but to him it can't come soon enough. After a quick blood draw and a lollypop, we were off to echo lab. <br />
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There we briefly saw our Fontan buddy Eli, but because of patient privacy, etc, we could not talk only in the waiting room but then we were whisked away and didn't get to talk much. Eli is doing awesome as well. <br />
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We had our height and weight measured weight 23.2kg which is 51.04 pounds and 113 cm / 44.4 inches tall ( Still not tall enough for the pool waterslide :( ) Oxygen saturation was great near 100% and EKG was good too. Echo was wonderful, we had our old buddy do our echo, he has worked with us since Jasiu was a baby, he remembers the struggles and lengths we went through to get a good echo, and this time as usual, Jasiu laid down, turned on his tv show and only complained once because he was uncomfortable, usually when they look though the jugular angle, from top of neck down at the heart, requires an arched back and head tilted back (kind of like looking at the TV upside down.)<br />
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Once our echo was done and Dr. H. read it, he came in to see us. When Jasiu saw him, he gave him the biggest bearhug I have seen him give someone who he barely sees anymore. It literally brought tears to my eyes. We talked about endurance, school and next steps, and we were explained that right now we are "cruising". I was told we don't see much of any issues until teen years, which of course we hope to never see, but for now to keep doing what we are doing and enjoy life. We will do just that. We sported a holter monitor for 24 hours (Friday all day and through Saturday, until we got to Michigan for the 4th of July weekend). Jasiu, though he DID NOT LIKE having it on, did not complain and went on his merry way. Results came in just last week, all normal.<br />
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I did explain to Dr. H. that we had a slight mix-up in medicine late May, where Jasiu was getting 3x the Enalapril dose he was prescribed for 5 days... This mix-up was caused because I did not pack the 7 day medicine dispenser and Joe thought he was supposed to get full tablet of Enalapril and aspirin. When this happened we noticed a huge increase in Jasiu's night time cough. Well turns out that he outgrew that dose anyways so it wasn't that bad for him as we thought. I'm not sure if related, but we were switched to Lipril. So far so good with the new med, and no cutting required. It has a longer half in the body so stays effective longer. <br />
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After our appointment we went as usual to Target, to reward Jasiu for all of his cooperation, of course Pokémon was the reward, because God only knows we don't need any more Lego's. <br />
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We had a great 4th of July weekend in Michigan, berry picking, beaching, shopping and eating and finally blueberry picking and finished off the holiday at a great BBQ . <br />
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We are off to enjoy what is the rest of our summer vacation and off to 1st grade we are. <br />
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Here is a few pics from May (Dominik's first birthday session). All the kids are growing up so quickly. <br />
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<br />Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-85143298496952332792017-06-17T14:59:00.000-07:002017-06-17T14:59:09.155-07:00Goodbye Kindergarten <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqqqMv95-I6b7pvJbHf1QNcHUuYsLgz1lxEGIklx60pHVgaC-JoS200ZKs2sN60v1OoVmmzP6bGj_0mius0rzA4CpJys1bXUCoQ6tovSi6kEq0L6F73PYrxqmUTiocJjjqWVfwng6YQU/s1600/20170601_111431.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqqqMv95-I6b7pvJbHf1QNcHUuYsLgz1lxEGIklx60pHVgaC-JoS200ZKs2sN60v1OoVmmzP6bGj_0mius0rzA4CpJys1bXUCoQ6tovSi6kEq0L6F73PYrxqmUTiocJjjqWVfwng6YQU/s320/20170601_111431.jpg" width="180" /></a></div>
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So this just happened (2 weeks ago)!!!</div>
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Just like that this boy is out of Kindergarten. He graduated wI think so much excitement to go to 1st grade that it melted our hearts. </div>
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His class had a graduation ceremony where all the kids walked the stage and sang songs for the parents. It is so joyous to know that we crossed another milestone in his life with no major interventions or setbacks. We all went to see him graduate and even Grandma and my sister attended. Jasiu was so proud and happy and so are we. </div>
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We have truly been blessed because we are so fully aware of the alternative. </div>
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We have a jam packed summer with outings here and there to go out and enjoy summer vacation. Jasiu is excited to swim hike and do so many things and we pray gets to do it all. We have summer passes to the local pool, dad is with the kids all day and mom is working summer hours so this should call for a nice summer. </div>
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Junemployment 30th is our annual appointment so wish us luck.</div>
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<br />Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-34861049821221518102017-03-11T00:02:00.000-08:002017-03-11T00:02:33.035-08:00A new Outlook... As I was posting the most recent birthday post, I realized for the last three years I only had 15 posts and in the first three years I had 135 posts.<br />
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As always I have said that no news is good news in the heartland. Much of the first thee year's updates were our day to day lives in order to document our journey - the good, the bad and the ugly.<br />
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The original purpose of this blog was to keep family and friends updated on how Jasiu was doing so that friends and family, whomever was interested, would get up to date information. As we have progressed in our journey and our life became more and more "normal" I have failed to update because we were living our lives. At the same time, I began to have more and more time to devote to helping newly diagnosed families and show them hope and the joys that this journey can bring. As I was talking with some of the families I was paired up with, I often pointed them to this blog to give them a glimpse of our day to day lives were in the beginning because that was their #1 worry and they read all about our hospital stay experience and how we dealt with all of this. I now realized how scary that must be to read, even though our journey has been relatively "easy". I know, I did the same when we were diagnosed.<br />
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One day at a wedding we attended, I met a woman who came up to me and said these exact words "You don't know me, but I know you very well". This may sound strange at first, but turns out that she heard from a friend of a friend of a friend who had a "child with a heart problem" and I'm not exactly sure if she googled our blog, or someone pointed her to it, but she found my blog. Turns out she had a little girl born with a large VSD and was for lack of a better phrase, heartbroken. Her daughter's heart had to be operated on shortly after birth. She said that during her daughter's hospital stay she read our entire blog and got courage that if we can get through HLHS, they can get through their journey too. She was the nicest lady and we connected right a way. The heartland does that to people, it's the club you hate to be a part of but you are thankful when you find others like you that you can support each other. This scenario is fine if you are thrown into the heartland unknowingly, after birth of the baby. However being prenatally diagnosed, reading the first two years of our journey can be scary. And it's not an easy path to choose, but it can be as good as you can make it. Where there is a will there is a way.<br />
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So in the spirit of trying to provide more hope, my goal will be to post more often our everyday accomplishments hopes and dreams. Hopefully seeing all the positives of this journey will give strength and courage to as many families affected by congenital heart defects to choose to walk this path that they were given bravely and with hope to live each day to the fullest. <br />
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Not all days will be great, but all days you live to see another day are worth living. No one knows what tomorrow will hold, and we don't know that our or Jasiu's future is certain, but we choose to live and do everything to strive to be better than yesterday and that should suffice. <br />
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<b>So anyone starting to read our story starting just now, read all the current good stuff happening now and then the hospital days, because those hospital days will pass with God's grace you will survive it and be thankful each day forward, as we are. </b><br />
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<b>Here we are living our life with HLHS in the last 6 months :)</b><br />
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<tr><td class="tr-caption" style="text-align: center;">Last weekend getaway trip to Wis Dells</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEJ8hdGCBemHr8QGLs3yP9HpHrkJimLEyHkOk_X4wm3MocU3ABTS1vSVe1LZGoamsZgNjucBYIIcIB6xjs0lTA9FxmlONz5lat8tT4LKpzd-eJTSN8YhSOWbC1B7LcqhqrHqEGxVYU8MU/s1600/20170303_150121_001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEJ8hdGCBemHr8QGLs3yP9HpHrkJimLEyHkOk_X4wm3MocU3ABTS1vSVe1LZGoamsZgNjucBYIIcIB6xjs0lTA9FxmlONz5lat8tT4LKpzd-eJTSN8YhSOWbC1B7LcqhqrHqEGxVYU8MU/s320/20170303_150121_001.jpg" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbLwd_InYdIseQNqod8V72RkHHte-Z1MGGnV2cGiAOhXLGdwA79VOGHpjHioeWivLSokUBwoTxIpZEZzjDaxxb5NBB7Vdcu4ZWKFFAHOkel57LSKPFw1NgjSOc-YfMjwUgTkxTq_VmkzQ/s1600/20170204_194413.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbLwd_InYdIseQNqod8V72RkHHte-Z1MGGnV2cGiAOhXLGdwA79VOGHpjHioeWivLSokUBwoTxIpZEZzjDaxxb5NBB7Vdcu4ZWKFFAHOkel57LSKPFw1NgjSOc-YfMjwUgTkxTq_VmkzQ/s320/20170204_194413.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being the best big brother</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1SlygN-X7YIQXm7zrKwilrGyQHniwDD4UVIn_pylyfHNuvX_yK9C5JWLUiavRwlcIra4lXI-Y9p1-2AdV2Ag_255P387WtEZz2kfhK0PyKH9XiXYSFGLtccyvCElgHWA8BxnKVqR1ny0/s1600/20170214_211002.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1SlygN-X7YIQXm7zrKwilrGyQHniwDD4UVIn_pylyfHNuvX_yK9C5JWLUiavRwlcIra4lXI-Y9p1-2AdV2Ag_255P387WtEZz2kfhK0PyKH9XiXYSFGLtccyvCElgHWA8BxnKVqR1ny0/s320/20170214_211002.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being the goofy brother</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8NCNTcHykjIC_b17ZPlx4kSEQB3dp4BFomjUwu3ar9BSV7OsWIg8zPz7v5HYKlQUx2bMVbUNuwqiIfzsQy6omhTtPVZ4BGKe_DEQWP7fUB_tEaIWPv21f2P_UMNphgLiCExQ__6LMrPk/s1600/20170217_201050.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8NCNTcHykjIC_b17ZPlx4kSEQB3dp4BFomjUwu3ar9BSV7OsWIg8zPz7v5HYKlQUx2bMVbUNuwqiIfzsQy6omhTtPVZ4BGKe_DEQWP7fUB_tEaIWPv21f2P_UMNphgLiCExQ__6LMrPk/s320/20170217_201050.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loving some monster trucks</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZjDJYO9nkjzsQCOs9jSk_4fnmBJKpQPi8ORp9vDuYM9ecN8lbtgMu3a7kMUOIGbCUZX6O8_YutXfgCZXZU08RHA8OlPzCacs0OSnfgwT63KP1ZNvFd5rrKmCe5cqFCLZNhegSz-RSaz4/s1600/20170105_211357.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZjDJYO9nkjzsQCOs9jSk_4fnmBJKpQPi8ORp9vDuYM9ecN8lbtgMu3a7kMUOIGbCUZX6O8_YutXfgCZXZU08RHA8OlPzCacs0OSnfgwT63KP1ZNvFd5rrKmCe5cqFCLZNhegSz-RSaz4/s320/20170105_211357.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loosing your first tooth</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXVe-r3IcgoyMhwXtLLdqKotomc9lU4LliWfowK3unHU3XrOdNBaMcXVjlYYy7op59npqsQCN4XosmfOCQNT0JO3YAUuB22loKD_6s2Z_tD4TV_eW5iAWwfqmRXLx4sC9OEKEThqR6z90/s1600/20170114_135816.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXVe-r3IcgoyMhwXtLLdqKotomc9lU4LliWfowK3unHU3XrOdNBaMcXVjlYYy7op59npqsQCN4XosmfOCQNT0JO3YAUuB22loKD_6s2Z_tD4TV_eW5iAWwfqmRXLx4sC9OEKEThqR6z90/s320/20170114_135816.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Skiing and not giving up</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ZhuDUjeuhnnHIwewiqzt3uG_aISIjqWNbMNzsfHxHmMZBG_41gl49ZDMGrSuFcxIfi72_rDjaatt7QHoAiI9iIhfi8iaWeuVc-ArJnxVsBwOvp72-6H8eAoTGWHGEKVUcnxniWz6rGc/s1600/20161217_105600.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ZhuDUjeuhnnHIwewiqzt3uG_aISIjqWNbMNzsfHxHmMZBG_41gl49ZDMGrSuFcxIfi72_rDjaatt7QHoAiI9iIhfi8iaWeuVc-ArJnxVsBwOvp72-6H8eAoTGWHGEKVUcnxniWz6rGc/s320/20161217_105600.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">just plain silly</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0lZDLqObW_4d1I3Go-ELZd7QmJwv0ZOeRjOHETtFquZAbKv8OSUmw1cCpnSk_nMlv7VoBpAFsVKrHT7HbvF50tTrQbe0r0g3ThfOMIYPJshcajNf40_cHxMz-HwizZKP1E3MhYJnzkw4/s1600/20161225_084058.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0lZDLqObW_4d1I3Go-ELZd7QmJwv0ZOeRjOHETtFquZAbKv8OSUmw1cCpnSk_nMlv7VoBpAFsVKrHT7HbvF50tTrQbe0r0g3ThfOMIYPJshcajNf40_cHxMz-HwizZKP1E3MhYJnzkw4/s320/20161225_084058.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">best presents under the tree</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMQqgU02fdnEgQZwWjt6w9Efs1vtiuImmgXM9JL6xLMWjolYiWKFC5Ey2Jb67nfF6-scFt1YTLYl9RhZ2jM3rcg2AFaXan2j1GwfHlvrxW4vI-K_ySy9wNEH28qGtTj5dPLs-zTNgp_Lo/s1600/20161022_085017.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMQqgU02fdnEgQZwWjt6w9Efs1vtiuImmgXM9JL6xLMWjolYiWKFC5Ey2Jb67nfF6-scFt1YTLYl9RhZ2jM3rcg2AFaXan2j1GwfHlvrxW4vI-K_ySy9wNEH28qGtTj5dPLs-zTNgp_Lo/s320/20161022_085017.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">more silliness</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA6JNpWFOntjHp33Yh-0XltrhggM8ud-G9GJribVUdpPZsMc48xwBSt1uKsfofLvT9MWZ3tCUhKUy7J1gKhkTnQpW9z2CBT-7UyShjNAxuO3AcuUUlUYNVVLBzQcTrP5PqmLEFyrpgCfE/s1600/20160910_095559.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA6JNpWFOntjHp33Yh-0XltrhggM8ud-G9GJribVUdpPZsMc48xwBSt1uKsfofLvT9MWZ3tCUhKUy7J1gKhkTnQpW9z2CBT-7UyShjNAxuO3AcuUUlUYNVVLBzQcTrP5PqmLEFyrpgCfE/s320/20160910_095559.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being the cutest ring bearer</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLPckzEeogSLreyj7P_TP_TA2wdCfmegq3dnegEcOjCC6WtzzWmU234gvQofcjDp439a-BgaNxTkXkn7RkvdPxK10TJekKnBJFpTJngcsHhjGJcfIHlfyH16dbdblA8OWUGORuFmy5n5s/s1600/20160917_123308.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLPckzEeogSLreyj7P_TP_TA2wdCfmegq3dnegEcOjCC6WtzzWmU234gvQofcjDp439a-BgaNxTkXkn7RkvdPxK10TJekKnBJFpTJngcsHhjGJcfIHlfyH16dbdblA8OWUGORuFmy5n5s/s320/20160917_123308.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">exploring a firetruck engine</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0PnIreMXbYPF7wKt0Nhkc0oGd5oBbTcrGMSq6nMvoBDdqDgdQmQGk-UVDrSHAUM4qvzxjBywUnYFvrBlBpj-HvECvHz1tlQ6lad2YlF8aMjROfEqbIBrAnIETE7HaFhGLIrBrOlS3XoQ/s1600/20160807_155606.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0PnIreMXbYPF7wKt0Nhkc0oGd5oBbTcrGMSq6nMvoBDdqDgdQmQGk-UVDrSHAUM4qvzxjBywUnYFvrBlBpj-HvECvHz1tlQ6lad2YlF8aMjROfEqbIBrAnIETE7HaFhGLIrBrOlS3XoQ/s320/20160807_155606.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">and some good pontoon rides</td></tr>
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<br />Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-85916362384179477432017-03-10T22:31:00.000-08:002017-03-10T22:31:15.142-08:00SIX<div style="text-align: center;">
<b>We have a SIX year old !</b></div>
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Two weeks ago, Jasiu turned six, we kissed our five year old good night and whispered in his ear that tomorrow he will wake up a six year old.<br />
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With all the excitement he asked, will I be bigger than Sebastian (younger but taller cousin)? I replied, you will be OLDER not necessarily bigger (taller) and he gave me a satisfied smile and fell asleep with the idea of being Older than his cousin. The worries/ excitements of a true 6 year old!<br />
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How blessed are we that he can still go to sleep worrying about the stuff that matters most to just kids and not about his heart.<br />
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His birthday, was a no Polish School Saturday, so that was a plus, we celebrated with just the 5 of us and a small M&M cake. Then his godmother came over with a great gift relevant to prior week's early celebrations Monster Jam Truck, our Favorite Pirates Curse. (A very good gift Ciocia)<br />
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Every birthday I think about all that went on the day Jasiu was born and the immediate days that followed. The fear, uncertainty and love we had for this brand new baby hooked up to those machines, medicines and that required 24/7 medical assistance. I think about it and think I wish I can go back to myself 6 years ago and tell her that it gets better and that it is all worth it. I remember being scared that he may not make it out of the OR, the first time, that he may have complications, that he may not make it out the second, third time... always fearing the worst. Was it all for nothing... maybe, but all those fears are helping me realize that we must cherish each day....<br />
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Now days, it's hard to think that this wild, stubborn, yet loving and cuddly kid went through all that in his first two years of life. Jasiu has such willpower to do what he wants and the most squiggly annoying little voice that sometimes honestly he just drives us nuts, I find myself <strike>raising my voice </strike> OK yelling and then falling asleep feeling bad about it, like any other parent. However, most of the days I think how much love of life and all things boy. He has so much energy I don't know where it comes from but we are glad he has it.<br />
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So for now we <strike>deal with</strike> enjoy this rambunctious Jasiu of ours and hope and pray he has this much energy and love of life forever.<br />
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Happy Birthday Jasiu !</div>
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Here are some pictures from our celebrations.<br />
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<br />Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-71125341341868230932016-08-03T18:53:00.000-07:002016-08-03T18:53:45.190-07:00Post Dental WorkWe have a brave boy ! John was ready to leave for the hospital at 8am, kind of excited about it, even though we didn't have to leave until 10 am. Good thing he's not that much of an eater because he did not ask for food or drink at home or at the hospital until 1pm and that's when he got the versed medicine to help him with separation anxiety and he was off to the procedure. <br />
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It brought on many memories sitting in that waiting room that I did not want to relive and it didn't make it any easier knowing it was only for dental work this time. <br />
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<tr><td class="tr-caption" style="text-align: center;">Waiting in Dad's lap</td></tr>
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John was in good spirits and by the time they had to take him he was so drugged up that he did not cry or wasn't even phased that the anesthesiologist took him away from us, he was practically sleeping. When we walked into pre op there was a game and two matchbox cars waiting for him, courtesy of Child life department, so that made it less scary . We played one round of pop up game, then some Legos and then with Play dough. We were scheduled for 12:15 but of course they were running behind (hospital time, we like to joke) and they took him around 1:15. Before that we discussed the procedures with our dentist, Dr. Lubas and the anesthesiologist, who is very familiar with heart kids, as she works with for pediatric cardiac kids only. <br />
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<tr><td class="tr-caption" style="text-align: center;">All drugged up Jasiu </td></tr>
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We were escorted to the waiting room and had some lunch in the waiting room. Then I went to pump and came back and still no word from the OR. Then around 3:30 they came and called us that they were finished. We talked with Dr. Lubas. John had 2 palpitations (sp?) and all the fillings and 3 crowns put in. ( I need to take a pic of those but they are silver). All went well as scheduled. Thank God!<br />
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Next only one parent was allowed in the phase 1 recovery - immediately out of the OR. As soon as I entered the double doors I heard Jasiu, not crying rather coughing. He does this if his throat hurts he coughs. He was quite polite about it and covered his mouth every time he coughed. I asked if he can get water and they allowed it, it only slightly helped. Then the anesthesiologist asked if he likes popsicles? That calmed him down immediately and she even brought two ! So that helped his spirits and throat, I call that a win, even though it was such a bright orange (read artificial color and most likely flavor). After about 15 minutes we were escorted to another phase 2 recovery room and dad joined us. <br />
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The phase 2 recovery he got some juice, vitals were taken a few times and then finally he was ready for discharge, it lasted about 45 minutes. Finally the IV came out and we were discharged around 5pm. All in all not terrible timing. </div>
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In the last 3 hours Jasiu had some chicken soup, yogurt and bread dipped in milk so his appetite is slowly returning. Only restriction we have is no swimming and bike riding due to anesthesia needing to wear off completely over the next 24 hours.</div>
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Then we are on to regularly scheduled activities. Kindergarten in 2 weeks !!!</div>
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Now we have movie night and then off to bed. Thank you for all the prayers. </div>
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<br />Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-43935826742146135472016-08-03T07:08:00.003-07:002016-08-03T07:08:44.293-07:00OR sooner than we thought-- Dental IssuesAs we have been reminded time and time again, nothing is "easy" with HLHS kiddos, dental work included !<br />
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Two weeks ago we had a pre Kindergarten dentist appointment and we learned that between his last appointment a year ago (my bad), John has acquired 7 cavities ! SEVEN ! <br />
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I don't know whose fault it is at this point, could be that he loves lollypops and bites them and we have only slightly limited their existence in John's diet, could be that his teeth have been exposed to sugary syrups from all the meds he has had in the past and his teeth enamel is weak, could be that he inherited my terrible teeth genes, or could be that we allowed him more often than not to brush his own teeth lately, mostly since his last appointment. Anyways, it is what it is and we have to fix it. <br />
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For a normal kid, say Emily, whose one cavity we already fixed last week, you get some numbing gel, get a local anesthetic shot and the dentist fixes it right in the dentists office, no big deal. But for a cardiac kid, one who is on aspirin, first the kid takes a dose of antibiotic for the cleaning and dental exam, just in case prior to the appointment. If a cavity exists and has to be fixed, we would have to stop the aspirin for 7 days prior to getting the tooth filling. Since John has 7, this means they would have to fix it two at a time, so that would be off of aspirin for a minimum of <br />
weeks at a time, for someone who depends on the aspirin medically, that is beyond the comfort of our cardiologist, so we have to do it all at once - IN THE OPERATING ROOM , UNDER GENERAL ANASTHESIA ...<br />
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Did I say in the Operating Room with a breathing tube down the throat administered by the pediatric cardiac anesthesiologists, same ones that did his open heart surgeries? Yes the same ones. <br />
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When I heard this I almost threw up right there in the dentist office. I was/ am not ready to send him to the OR again, not even for dental work. <br />
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I was assured that it's very routine, we should go home the same day and all will be well, but this is still a big deal to us . <br />
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We go in for this today . Please send a prayer for John and for a successful procedure with no complications from either the anesthesia, from the dental work and for his spirit. He not phased by this at all since he doesn't remember the last time he was in the OR. He knows hes going to the hospital and will have his teeth fixed but probably doesn't realize what that all entails. That is a good and bad thing, I want him to not beg for the candy and soda, but I don't want him to be terrified of the hospital - it's a fine line. <br />
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I will keep the blog updated. <br />
<br />Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-40842516044439656372016-07-09T04:22:00.003-07:002016-07-09T04:22:48.794-07:00Semiannual UpdateSo this is a looooong overdue update. Haven't updated since February and we have been busy, so we will have one long one. <br />
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1. Today Jasiu had his semiannual appointment with cardiology. His LAST semiannual as he just graduated to ANNUAL appointments !!! Mama is more scared than Jasiu. He did great at the hospital and confused it with "mom's hospital" (I'll get to that soon). He walked in like a boss, went straight for the toys in the waiting room to wait his turn. Then he walked in and got his height, weight and vitals. He was perfect for EKG and echo as well, at this point John is a pro and such a good boy. He is almost a full pediatric bed in the room, so that's huge for us. The echo and EKG were read and Dr. H said all looks great, no changes in leak, still mild and function is great and there is no narrowing in any of the areas that possibly could narrow. Then he said we can see you in a year, unless John says something is different or we notice anything off out of the ordinary ! WOW one whole year to see cardiology. This is huge for us. Labs went decently well and the blood draw caused just a few shed tears but nothing a new LEGO set couldn't fix. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi02w-J2ZE9-XZOyF8pMqlDd2bP2IJRqodr8Q9ZTIjJucKIPlbONAzNbs3N0NmVRofiwPUrczPUFnD35x8rHDSHcSfl225sVMKYaeZXI3yxH5puvUpjnRNqRpdf5DB-WkrHxwZeuoZOFNY/s1600/20160708_113758.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi02w-J2ZE9-XZOyF8pMqlDd2bP2IJRqodr8Q9ZTIjJucKIPlbONAzNbs3N0NmVRofiwPUrczPUFnD35x8rHDSHcSfl225sVMKYaeZXI3yxH5puvUpjnRNqRpdf5DB-WkrHxwZeuoZOFNY/s320/20160708_113758.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">with Dr. H.</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMnTbGbIGmA-ZzmksbPNXbaESxtHNeZU-c2O9RENLCSfTUaoK3ct_ln1wskzJdUAZ4TGxxztQ2csPWYVU_PZg7EYeqVBAnj3a_hFhsCX3i2ddL21M1YNG8xe7uD4CYZLfszauomu_DNo/s1600/20160708_102327.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUMnTbGbIGmA-ZzmksbPNXbaESxtHNeZU-c2O9RENLCSfTUaoK3ct_ln1wskzJdUAZ4TGxxztQ2csPWYVU_PZg7EYeqVBAnj3a_hFhsCX3i2ddL21M1YNG8xe7uD4CYZLfszauomu_DNo/s320/20160708_102327.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">EKG Time</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFojDDqR-zZSFBLia06b7lcuGlbmwMit76HrO6kImmgf4Qe0_BQR_3YIPFwwvuA26YN4ugzRS3re1LM6Qaif2ujWqfSfMh-as5ILYe_eUFAgylXXCaBBLrQEcZwQbkOLvYvmPweQouNtU/s1600/20160708_105924.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFojDDqR-zZSFBLia06b7lcuGlbmwMit76HrO6kImmgf4Qe0_BQR_3YIPFwwvuA26YN4ugzRS3re1LM6Qaif2ujWqfSfMh-as5ILYe_eUFAgylXXCaBBLrQEcZwQbkOLvYvmPweQouNtU/s320/20160708_105924.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting an Echo like a boss</td></tr>
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2. This week marks 6 weeks that Jasiu is a big brother, for those readers that are not on Facebook, I don't think I even shared the news on the blog. Baby Dominik was born on May 25 and Jasiu became officially a big brother, a job he doesn't take lightly. Emily being a big sister AGAIN, is also very excited, "even if the baby is a boy he's still cute " (her words). Baby is heart healthy above all else, we had two fetal echos and I insisted on an echo after birth and they are all good and normal. Baby is doing well and we are all adjusting to being a family of 5. The true test will be when the kids go back to school and I go back to work, but all will be well I'm sure. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqnfr-0AULCGLFLzVGHI4NNutBka-ZMwxr4Fr6IRLD0siO1OXWHS765Iqq6nltggJ6tsFRBx8zwOAiF1lmyjTWYVkN-aRcTBMaIBDxWbqCp119dT81KTzIsCy4ziWSMHD5DZUXTa0emo4/s1600/0U8A8034.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqnfr-0AULCGLFLzVGHI4NNutBka-ZMwxr4Fr6IRLD0siO1OXWHS765Iqq6nltggJ6tsFRBx8zwOAiF1lmyjTWYVkN-aRcTBMaIBDxWbqCp119dT81KTzIsCy4ziWSMHD5DZUXTa0emo4/s320/0U8A8034.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Maternity Session</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUd5sIF6MGGrxs65jfK0T7buzZT-tw6pHRNfk_a1fDtxy4PxuCAMqFSNvvy8fl3J8RVbaJgkjzdTGH7s_qS-cxUx53jWkwGjeQ4jpITW_j6x6fuzKEXtda3DRM2DuzlHxp6QbO0BRc4KU/s1600/MagnoliaOverlay+%25285%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUd5sIF6MGGrxs65jfK0T7buzZT-tw6pHRNfk_a1fDtxy4PxuCAMqFSNvvy8fl3J8RVbaJgkjzdTGH7s_qS-cxUx53jWkwGjeQ4jpITW_j6x6fuzKEXtda3DRM2DuzlHxp6QbO0BRc4KU/s320/MagnoliaOverlay+%25285%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Maternity Session</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSX4WNWeKERsJZOhJwqJRdFDZQ52LQltbwsFqZf1935mgxHQ9NsZUj5kv8VOZy7NTQjfQiI1i6gEWOvCNxTr6FVCyxQCTwpDGzqbMVkdsgLj6c6y_DVDAj2uVTQXpjEJgU1Yi76sY9teI/s1600/20160605_110557.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSX4WNWeKERsJZOhJwqJRdFDZQ52LQltbwsFqZf1935mgxHQ9NsZUj5kv8VOZy7NTQjfQiI1i6gEWOvCNxTr6FVCyxQCTwpDGzqbMVkdsgLj6c6y_DVDAj2uVTQXpjEJgU1Yi76sY9teI/s320/20160605_110557.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jasiu enjoying being a big brother in awe... </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQtWPQjGwzEGomt6LQSactiyMPRVD9dMTOwGlLvUJeeRPIbyTJK0qKprmoEwqMGRTyCX4GnZjZOJmgXKdYlQU9vUv1Ut59r5DU0qGGdFJ2yKIvNh4yC2qbnZE6AfX2OqFnrYZdcx2jsYc/s1600/20160613_081322.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQtWPQjGwzEGomt6LQSactiyMPRVD9dMTOwGlLvUJeeRPIbyTJK0qKprmoEwqMGRTyCX4GnZjZOJmgXKdYlQU9vUv1Ut59r5DU0qGGdFJ2yKIvNh4yC2qbnZE6AfX2OqFnrYZdcx2jsYc/s320/20160613_081322.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All three kiddos</td></tr>
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3. Jasiu is registered and getting an eye exam and another dental exam all in preparation for KINDERGARTEN !!! Another milestone in this HLHSers journey. I can't explain how excited we are that he gets to cross this milestone off his list come mid August. He knows almost all of his letters and numbers to 10 and can verbally count until 20, he is a very smart boy and just as his sister has a remark for almost anything you tell him. He negotiates well with Emily to get what he wants. <br />
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Overall, as always, no update is a good update, means that nothing out of the ordinary medically is happening, and since we are on a good streak, we like to keep it that way. We are living as normally as possible with a kid with half a heart, which for us only means that we work hard to remember morning meds, and the fact that we sometimes have to force out our blueberry out of the pool to warm him up. He tends to get cold and lips and nail beds are quite blue, even pulse ox was at 75 for about 10 minutes once, but once warmed up, it got right back up to his usual 95 range. Other than that we have a typical mischievous 5 year old who has lots of energy, gets in lots of trouble and thinks up of the coolest Lego creations all in that little head and heart of his. <br />
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<tr><td class="tr-caption" style="text-align: center;">4 th of July Weekend</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This is a tired Half hearted boy at 2pm after a long weekend - nap time deserved (rarely happens these days)</td></tr>
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We keep praying that things stay this way and keep thanking God for this miracle that we are able to enjoy another day. <br />
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<br />Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-83223021729684914862016-02-25T07:31:00.001-08:002016-02-25T07:31:16.250-08:00~ FIVE ~<div style="text-align: center;">
<strong>"Am I a whole hand now?" came yelling into my room this morning at 6:30.</strong> </div>
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This little boy is super excited to turn 5. </div>
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I am amazed at the energy and enthusiasm this kid has. He is strong willed {read: stubborn}, funny, and just amazing. I need to start keeping better track of the blog but life gets in the way and we are perfectly fine with that. </div>
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We beat the horrible statistic we were given and I feared from the day of his diagnosis 75% of HLHS kids make it to their 5th birthday! It seems like a lot, but not what you want to hear when your dream up of your perfect little baby. But here we are and feeling blessed !</div>
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We will celebrate this Sunday with a LEGO party and celebrate each and every day as we have been trying to since the day he was born. </div>
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<br />Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-22136914976669735382015-07-10T11:26:00.000-07:002015-07-10T11:26:19.622-07:00Semi Annual Update !<strike>Last week</strike> Last month (I started writing and never posted) we had our semiannual cardiology visit with Dr. H. With great joy, we have nothing new medically to report, which is a great way to start our summer. Dr. H has a new nurse who is really nice and I'm sure we will grow to like her as much as we did Angie. { Angie - we miss you !!!} She was able to get me some of John's hospital records so that I can take with us on our trip to Poland just in case. She seems easy to work with and that makes me feel a lot better.<br />
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Heart function is good with the usual mild leaking, nothing major. Weight 42.5lbs height 43 inches (I think). John was a great patient this time as well and had a good time chatting up all the nurses, doctors and techs. Dennis, our favorite echo tech was telling the new person whom he was training, how far Jasiu has come from his screaming crying sleeping echos and it really made me greatful that we have such great care here at Advocate. </div>
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We are all clear to go to Poland this summer cardiac wise, emotionally though I'm pretty nervous. As most readers know, Jasiu has the "best" luck of getting into trouble, so hopefully we have an uneventful trip. We will be almost 2 hours away from any hospital equipped to handle HLHSers as far as I'm aware. I did however meet our new neighbors and her sister lives in Poland not to far from where we are visiting and has a 5 year old HLHS'er post Fontan as well. Makes me feel slightly better. </div>
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John is also registered for preschool in our district for 5 days a week and I was working on starting a 504 plan for him just in case, and seems to be some hurdles we need to cross, mainly that we have to wait till beginning of school year to get anything started and I would like him to be in the AM class since he tends to tire much quicker. As a result I think the AM class would suit him better and he would have best experience coming fresh from a well rested night instead of tired from morning play, especially since he still likes to take a nap in the afternoon from time to time. Hopefully everything works out for us when we get the process started. Emily and Jasiu unfortunately will not be in the same school this year since she is moving to middle school 2nd -5th grade. Jasiu will be in the school Emily just graduated from !</div>
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Finally, I want to thank everyone who joined our Team Jasiu for our annual Walking/Running for Hope on June 7th . It was a nice start with a very rainy wet ending. I haven't seen Jasiu's lips so purple from the cold in A LONG time as I did on that day. Despite the cold weather we had a great turn out and everyone had fun (minus the rain part). We raised a lot of money for the hospital and the Ronald McDonald house which all stays local to help this great hospital. I also want to thank my good friend from high school Joanna, who helped me design our very first TEAM JASIU t-shirts. She did an awesome job and the print came out exactly how we planned on the t-shirts. THANK YOU !<br />
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That is all the updates I have for now, let's have a great summer and hopefully uneventful health/cardiac wise. </div>
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<tr><td class="tr-caption" style="text-align: center;">OUR BRAVE BOY !</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">BRINGING IN DONATIONS FROM TEAM JASIU SHIRT SALES </td></tr>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-60858968432134582832015-05-01T08:55:00.002-07:002015-05-01T08:55:34.235-07:00Clever as they comeOur big boy had his preschool screening today and boy did we have a good laugh. These are too good to forget so I'm journaling it here. <br />
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Jasiu did great ! He was a tad shy at first but overcame that pretty quickly and by the end he was quite sad that he couldn't stay longer and actually attend now and that he had to go home. <br />
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They did the physical development first - stand on one foot, then the other, hop , hop on one foot and then the other. When he sat down he announced to the tester and his translator he was really tired and laughed. I could tell he wasn't tired, but he was amused that they believed him. <br />
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He knew all his body parts and all the items in the pictures except for tweezers. Tweezers.... he doesn't ever see me use them and our kids don't have access to them so I'm not surprised he doesn't know. <br />
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He knew all his colors and numbers and had trouble with the letters and sounds, which is ok by me, he only attended school since January of this year so he has plenty of time to learn it. <br />
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He had no problem tracing and copying different shapes.<br />
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When all the academic stuff was out of the way the situational questions came and boy did the testers laugh at this clever little boy of ours.... <br />
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<strong><u>Example one:</u></strong> There is a picture of a kitchen and a fork on the floor. <br />
Tester: What is this?<br />
Jasiu: Fork<br />
Tester: Where does it belong?<br />
Jasiu : On the counter or in the sink<br />
Tester: Why?<br />
Jasiu: Because this cat that is sitting here can possibly eat it and then he could choke !<br />
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<em>I nearly fell of my chair laughing, and believe it or not that is one of the acceptable answers for that scene. </em><br />
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<u><strong>Example two:</strong></u> Tester shows him picture of an apple<br />
Tester: What is this and what do you do with it?<br />
Jasiu : It's an apple, mom cuts it up and we eat it<br />
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<br /><strong><u>Example three:</u></strong> <br />
Tester: What do you do when you walk into a dark room?<br />
Jasiu: Put on our pajamas and go to sleep!<br />
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<strong><u>Example four:</u></strong><br />
Tester: Shows him a picture of a coat and asks What is this and what do you do with it?<br />
Jasiu: You wash it, fold it in a shelf and then you can put it on. <br />
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So all in all the screening went well, I hope he gets in this free preschool program (it is a program based on need to "catch up" in various areas). If he does great, if not Jasiu will attend the park district preschool like his sister and that will be fine too. <br />
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Finally at the end of the testing I revealed to the tester and the translator about HLHS and they didn't believe until Jasiu whipped out his zipper and showed them his "extra belly buttons". <br />
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Take that HLHS !!!<br />
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-42776694341803613252015-02-25T05:04:00.003-08:002015-02-25T05:04:45.313-08:00Make-a- Wish Trip<div style="text-align: center;">
OUR MAKE -A- WISH TRIP WAS AMAZING !</div>
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So it has been over month since we got back and I just got the time to sit down and write about it.(Ok, so I'm siting down a second time to continue writing.) As soon as we came back I had laundry, unpacking, new school for Jasiu and year end close at work (read: long hours at the office + weekends for almost 3 weeks). I did go through our pictures during the late night hours and compiled our memory photo book, but it took all the energy I had left after that trip. So let's start at the beginning... <br />
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Shortly after his 3rd surgery (April 2012) I applied to Make-a-Wish for Jasiu to see if his wish could be granted. For those that are not familiar with Make a Wish, "Make-A-Wish<sup>®</sup> grants the wish of a child diagnosed with a life-threatening medical condition in the United States and its territories, on average, every 38 minutes. We believe that a wish experience can be a game-changer. This one belief guides us. It inspires us to grant wishes that change the lives of the kids we serve." (from: <a href="http://www.wish.org/">www.wish.org</a>) <br />
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Jasiu's paperwork was sent to his medical team reviewed and he qualified for a wish, it is a common unfortunate misconception that a child has to be dying in order to have a wish granted. We were overwhelmingly grateful that he got this opportunity and yet it is also a reminder that Jasiu does have a life-threating medical condition despite how well he looks on the outside. <br />
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We met with our wish granters last winter and Jasiu decided he wanted to meet Mickey, Daffy, Goofy and the clubhouse friends. We were granted to go to Disney World in Florida. We decided he should be just a bit older before we go so that he can enjoy and remember the trip a bit more. A whole year we waited, the kids even forgot about it for a bit and then we surprised this December that we will be off to meet Mickey. <br />
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We had a fun start to our trip as the limo guy is the one who woke us up at 5:15am. We set our alarm clock for 4:00 am so that we could get ready and then slowly wake up the kids and not agitate them too much as it s quite early for our guys, but my husband set his alarm clock for 4 am on next Saturday not Monday. So the limo driver who was sitting on our driveway since 5am called my cell phone at 5:15 !!!! Well that was an abrupt wake up call, we double teamed, Joe got the bags in the limo, (good thing they were all packed the night before) and I got the kids not so subtly woken up, dressed and out the door. When we were driving away from our home it was 5:25 !!! We did it all in 10 minutes and we did not forget anything. AMAZING ! <br />
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In addition to a limo to and from the airport, with Make-a-Wish trip is you get amazing service at the airport, you skip all the lines, go straight to TSA and get a helper to help you with bags and then we were off. Our flight was not bad, kids were excited and we got a Give Kids the World Greater at the airport. GKTW is an experience in and of itself. It is a village for "wish" kids. You spend the week in your fully eqipped villa, meals, all you can eat pizza and ice cream plus all other meals. There is a heated pool, splash pad, playground, arcade, and much more. Every week the village celebrates Halloween, Christmas, Birthday party for the Mayor, Pirate and Princess night, etc... ohh and the mayor is a 6 foot Rabbit, Mayor Clayton. The Mayor can come and tuck the kids in one night, that was a blast. You can spend the whole week on the property and not get bored at all... but that's not the end of it. We got 3 day passes to all 4 Disney parks, 2 day passes to Universal Studios and Islands of Adventure and 1 day pass to Sea World, it's really amazing because it's not just regular passes, they are "Wish" passes which grant you access to all the rides and character greetings without waiting in any of the lines. AMAZING once in a lifetime opportunity. (let me tell you for Anna and Elsa, the line was about 3 hours long, Ariel, 1.5hrs., Merida 2 hrs. Whinnie the pooh 1hr, most rides were 55 min +. You could easily spend one full day just waiting in lines and we didn't - All the staff members recognize the "Wish Geanie" and just help in any accomodating way they can. <br />
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So I carefully planned out each day, located the kid rides we were going to experience and shared it with the family, but as plans like to do, they changed... we were exhausted and had to take a day to recuperate and visit urgent care for an unexpected ear infection for Jasiu. One day and one prescription for antibiotic later and we were back on track. <br />
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The highlight of our trip for Jasiu was meeting his current heroes, the Teenage Mutant Ninja Turtles. We had to travel to the Nickelodeon Hotel and had a private meeting with all four TMNT. It was a bit weird that Jasiu was a very shy and not super ecstatic, but he came around and he turned out to have a blast. I think he may have been overwhelmed by the whole thing. We all had a good time and enjoyed our private meeting with the turtles. Turns out that the ear infection was already brewing in Jasiu because I checked his temperature that evening and it was elevated. I checked in the morning and it was a full blown fever and an ear ache. So instead of Animal Kingdom, we went to urgent care the next day. <br />
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Day 1 - Getting to FL an spending time at GKTW at their Halloween Party<br />
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Day 2 - Hollywood Studios including many rides, character greets , Holiday Lights Show and Frozen Sing along experience<br />
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Day 3 - Magic Kingdom (New Years Eve) including Fireworks show, Cinderella's Castle light show (2 different ones) Meeting Elsa and Anna and many more characters, rides and great time. Mommy did 32,000 steps that day !. We were so tired we didn't even make the GKTW NYE party. <br />
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Day 4 - Sea World and Meeting the TMNT, great fun day but we started noticing Jasiu being more cranky and irritable. Christmas party at the village<br />
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Day 5 - AM - Urgent Care, antibiotics. PM - Downtown Disney Emily had a princess transformation booked and Jasiu spent lots of time in the LEGO store. Considering the circumstances a decent day plus Mayor Clayton came to tuck the kids into bed. . <br />
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Day 6 - Animal Kingdom - Amazing experience and Jasiu was sooo much better, In the evening it was Princess and Pirate party at GKTW<br />
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Day 7 - Day to go home we made it to Universal Studios and in the morning before our flight home to see some more of our favorite character. <br />
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This trip was such a blessing to us and it helped us celebrate the hardships that Jasiu went through to get to this point. It was a once in a lifetime trip that I hope the kids never forget, even if it is just by looking through the pictures. <br />
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Here are a few pictures and a link to the memory book that I created that captures the amazing moments we had. I will never forget the true happiness on the faces of my kiddos when they experienced it all. <br />
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<a href="https://www.scribd.com/doc/252067302/Disney-Photo-Book-2">https://www.scribd.com/doc/252067302/Disney-Photo-Book-2</a><br />
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After the week long adventure, we came back tired and sad that we had to leave but so happy that we go to experience Disney World and Florida in such a special way. <br />
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-48734476139754139592015-01-06T13:52:00.004-08:002015-01-06T13:52:52.736-08:00First Day of School A momentous day in the life of our little warrior - He attended his first day of Preschool !<br />
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He was excited all morning for this day and even packed his own snack and juice box. He picked his backpack and couldn't be happier. When we dropped him off, he did well too. He sat down nicely, attempted to write his name, handed the paper in and went to play until the teacher sings the special song... and that's when I had to leave. <br />
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There were only tears of joy and from this mama and not Jasiu this time. I still can't believe that this fragile little baby of mine is now a "big boy" going to preschool. With Polish School, it is only once a week and I kind of hung around the class and school anyways, but this seems much bigger than that, I will be at work when he's in school, so no easy quick access to him like on Saturdays. <br />
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After picking up our official preschooler, I'm happy to report all things went well !!!!</div>
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<br />Mrs. Gordon reported that Jasiu was well behaved and did very well and did not or cry for his mama. He is truly growing up and thriving. We are so blessed to see this day. </div>
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Stay tuned for Disney posts soon. </div>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-90479627794149450572015-01-06T10:42:00.000-08:002015-01-06T10:42:00.624-08:00Cardiology UpdateOur cardiology appointment went great ! With the holidays, our trip and everything else, I forgot to update. <br />
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Cardiology - Our favorite nurse has graduated to Nurse Practitioner, as a result she has found a new opportunity outside of our current hospital and we miss her dearly. W got there and all vitals were good, Oxygen sats perfect, even hit 100% for a while but mostly around 97-99% which is awesome. Then she tells us the doctor will be in shortly... I remind her that he will most likely have an ekg and echo... well no orders were written, I say go check again please. Of course he was supposed to get the echo and ekg so we get those done, but with the lack of a nurse the orders were not processed properly. That's ok though, all was good. <br />
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Heart function is excellent and almost improved, vessels are open as they should be and no narrowing is visible. No medicine changes, see you in 6 months. That's it ! <br />
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Fantastic news for us and for the holidays and our trip. The holidays were great, the house is full of new toys and we celebrated the birth of Jesus joyously. <br />
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Our trip was mostly a success as well. Those days will get their own posts shortly, once I go through all the pictures.... let's just say there was never a dull moment...<br />
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<tr><td class="tr-caption" style="text-align: center;">Perfect little patient</td></tr>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-1693867584751878412014-12-15T21:48:00.000-08:002014-12-15T21:48:08.725-08:006 month updateI scheduled Jasiu's 6 month cardiology follow up for this coming Friday December 19th. Always about 1-2 weeks prior to an appointment I get a reality check. Though it is "just" a check up I always walk in half holding my breath until I get confirmation that things are looking ok on the inside. That is also a time I remember to update the blog these days... Besides the cardiology check up, life has been just normal, and a lot of "normal" kid stuff has happened and some special heart kid stuff has happened too. <br />
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Since I didn't update for almost 6 months so here it goes. <br />
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Heart Kid stuff - In July Jasiu switched from compounded Enalapril (basically the pharmacy takes the pill, crushes it and dilutes it in sugary syrup so a baby or kid who can not swallow pills, or the pills don't come in small enough doses can take the proper amount). Enalapril in compounded form is more expensive to make at the pharmacy, but if you have no other choice you pay it. This past July, the company that makes Enalapril (the pill form) has decided to manufacture a liquid form and hence the pharmacy can no longer just make our compound, they have to purchase it from the manufacturer - as in about 10 times more expensive per month!!! So our great cardiology team re-evaluated last scripts and decided that if Jasiu is ready for a pill, we can switch him from the liquid 2x a day at a small dose to 1 daily at a slightly higher dose than he had before - read $3.50 per month and SO much less messy than sugary liquid and syringes. He just pops his half pill along with the chewable aspirin and daily vitamin and he's done for the day after breakfast. This made life a lot easier for all of us. <br />
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<tr><td class="tr-caption" style="text-align: center;">Our last compound bottle and our new pill bottle (should be smaller since there are only 15 small pills inside, seems like a waste of plastic. )</td></tr>
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Normal Kid stuff - In September we decided to sign up Jasiu for Polish School, only on Saturdays for a couple of hours so that he would get used to being in the classroom away from mom, dad or grandma and in the care of a total stranger. I thought I would be taking it much worse than my brave kiddo... boy were we wrong. Our energetic outgoing warrior screamed bloody murder the first, second, third... you get the picture. We tried to stay with him the whole time ( I could not leave the room or he would freak out). We thought it was mommy attachment so dad dropped him off, same thing, so daddy spent the day in preschool, still nothing. I was one hair away from signing him out for the year and to try again next fall and about three weeks ago Jasiu decided he liked Polish school and has no issues staying. I drop him off, he plays, does projects and is doing really well. So I may be just jinxing myself, but we will try regular English preschool twice a week at the park district as of January 6, 2015 and see what happens. It's only two hours twice a week and should be no big deal, however if we have separation issues... it's normal kid stuff !<br />
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<tr><td class="tr-caption" style="text-align: center;">Notice the grumpy face of a kid that does not want to go to school. </td></tr>
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Heart Kid stuff - we got Jasiu's Make-A-Wish granted! We will be leaving for Florida after Christmas to celebrate our warrior and all he and this family has been through. We are so excited for this wonderful opportunity. Instead of dwelling on the sad fact that we actually qualify for MAW we will focus on the positive that we are CELEBRATING the life that we were given and that it was all worth it. More to come on that topic after our trip. <br />
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Now all we need to do is pray for a great appointment so we can enjoy our trip and the New Years ! I'm sure I will update after our appointment since it will be fresh in my mind. <br />
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I'll leave you with some snapshots of what we have been up to the last 6 months or so...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC8uMmeSn1EQyybtt9RMKvJEWWavejDHloWkUOPSa0DVr3WY6NqZWwSBhLs6PdDmZEeqzIaUbfcgjoZrTPfO169kjP5hNOlbw34ZjfdDbIUccMKQ4Dxja5O2bP9V47B4gIPXMCvI_WZwE/s1600/20140914_142318.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC8uMmeSn1EQyybtt9RMKvJEWWavejDHloWkUOPSa0DVr3WY6NqZWwSBhLs6PdDmZEeqzIaUbfcgjoZrTPfO169kjP5hNOlbw34ZjfdDbIUccMKQ4Dxja5O2bP9V47B4gIPXMCvI_WZwE/s1600/20140914_142318.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A little boy who is obsessed with TMNT- Leonardo</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibj1D-22zWkOMV-3JxRKgKVei9Ho9t9wotHoQbZxrBEGF1jQQ1iJPxzgxTSxFF7rEFcmS0AXARdvJkki9xO1kiz2aDIlVm5quL4CQtFAF9_IZl7PHtvbdnvZgJwtO7PTAJY6kDBlUYJDQ/s1600/20141128_174534.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibj1D-22zWkOMV-3JxRKgKVei9Ho9t9wotHoQbZxrBEGF1jQQ1iJPxzgxTSxFF7rEFcmS0AXARdvJkki9xO1kiz2aDIlVm5quL4CQtFAF9_IZl7PHtvbdnvZgJwtO7PTAJY6kDBlUYJDQ/s1600/20141128_174534.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A little boy who enjoys himself at the theater a bit too much</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEZnxFjuF84N-yJAOcnn4mCclL7mkSD8JocexiyNailo_OIZPOhTyKi2xnZZCpnXWz_lA6W69AcYrr0rbjueM5htAm9b5198mDXrCtMnLO_-538sSJHOjWaR6ZiXY0w0TiUJyO8OAtFSs/s1600/DSCN6951.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEZnxFjuF84N-yJAOcnn4mCclL7mkSD8JocexiyNailo_OIZPOhTyKi2xnZZCpnXWz_lA6W69AcYrr0rbjueM5htAm9b5198mDXrCtMnLO_-538sSJHOjWaR6ZiXY0w0TiUJyO8OAtFSs/s1600/DSCN6951.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We celebrated Emily's 6th Birthday !</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOaqjfVsL3ivEUhsvrim-aKHoTKohpUId3B2GkbulMYjvsYezxkSnuE5q1iNoxt8hWHqA6nfsur2nzf0C9dFWLLqJ-5Gi3UIYvd07Z9zt9ERkxq7TypjKpO3VLGPkNUEew3YM5UiH38rw/s1600/20140823_115248.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOaqjfVsL3ivEUhsvrim-aKHoTKohpUId3B2GkbulMYjvsYezxkSnuE5q1iNoxt8hWHqA6nfsur2nzf0C9dFWLLqJ-5Gi3UIYvd07Z9zt9ERkxq7TypjKpO3VLGPkNUEew3YM5UiH38rw/s1600/20140823_115248.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We attended a few weddings- here in their wedding best </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE6QTcuhxmkW_2Q_JNlm63T6uRRd-KoaX3-pnPkX0V8VcwHN7Bw96qsut1XzC3LR8prls4_youXzOzAmVWgk5ElB47_HV4Lx_ptZW_5QOYtxQ7sNveNrWbBxvn07_3oUBow9OkkRiVIMY/s1600/3E2A5091.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE6QTcuhxmkW_2Q_JNlm63T6uRRd-KoaX3-pnPkX0V8VcwHN7Bw96qsut1XzC3LR8prls4_youXzOzAmVWgk5ElB47_HV4Lx_ptZW_5QOYtxQ7sNveNrWbBxvn07_3oUBow9OkkRiVIMY/s1600/3E2A5091.JPG" height="320" width="235" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And we took a few Christmas photos</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimh93aTaAtTgBZ4fJe_WvyZsBP3ssAgtcJxEnkgD2YYZzFm_NgkZ1Gi2sAFkd5TUFbQNM91nNXTU7UT6nq4XDfZvzZN0fs4JKR5v6kCkdYaG67rCpOH-lMQHzdGJi1ILtiJGpc0qHNdDQ/s1600/3E2A5093.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimh93aTaAtTgBZ4fJe_WvyZsBP3ssAgtcJxEnkgD2YYZzFm_NgkZ1Gi2sAFkd5TUFbQNM91nNXTU7UT6nq4XDfZvzZN0fs4JKR5v6kCkdYaG67rCpOH-lMQHzdGJi1ILtiJGpc0qHNdDQ/s1600/3E2A5093.JPG" height="276" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Silly Boy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1m69GaVF1o2H9N7mhRMIWFw3OCPzCMv7jyBktWLBUe__kYAQ_kE_ncemuVrf7czuf9RvswGJuswCMjqwG4n5cEFf3FQY6QQHBgcnJRhi_aGGNfm_zeCJEwLXfL7dgW2G1VybCjcVaTtE/s1600/3E2A5108.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1m69GaVF1o2H9N7mhRMIWFw3OCPzCMv7jyBktWLBUe__kYAQ_kE_ncemuVrf7czuf9RvswGJuswCMjqwG4n5cEFf3FQY6QQHBgcnJRhi_aGGNfm_zeCJEwLXfL7dgW2G1VybCjcVaTtE/s1600/3E2A5108.JPG" height="320" width="220" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our Princess</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">All that hard work for this one great photo that captures these two perfectly !</td></tr>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-43767872644602306142014-06-13T10:50:00.001-07:002014-06-13T10:50:25.182-07:00Six Month Cadio update & BIG THANK YOU !<div style="text-align: center;">
"Everything looks excellent." - Dr. H. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWqEaPAJfvHLCRKaV5Tsy1K8T004gTS_k9C5X-qgV8Ld2eR8FE8be5T97ghh8YF1XN_W3sCr3VB4JI7crOb2R1TV7bGaoztoCxOmDKoqIqpLzv9Pk-cbcPsX8sEu0T8Y7rDZYNdQtk1VU/s1600/cardio.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWqEaPAJfvHLCRKaV5Tsy1K8T004gTS_k9C5X-qgV8Ld2eR8FE8be5T97ghh8YF1XN_W3sCr3VB4JI7crOb2R1TV7bGaoztoCxOmDKoqIqpLzv9Pk-cbcPsX8sEu0T8Y7rDZYNdQtk1VU/s1600/cardio.jpg" height="240" width="320" /></a></div>
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It was by far one of our quickest full workup appointments ever. We had vitals (height, weight, blood pressure, pulse ox) EKG and Echo all in about one hour and a half, and completely out in 2. Jasiu was such a brave big boy already. He only minimally cried at the EKG sticker placement and wire clipping but once that was over it was great. Our echo was also a first - first time no tears <strong>AND</strong> he did not sleep through at least a part of it. He still did not graduate from the "mommy recliner" to the hospital bed for the Echo but that is ok with me, I love the snuggles. We watched a movie on the tablet and minded our own business while our tech was doing the scan. Even Bob, our echo tech, wanted to know what was going on in "Turtle Tale 2". <br />
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Doctor H was happy with the echo and said he has no concerns at this time. No medication tweaking and just keep doing what we are doing. Jasiu's activity level is great and he's happy with that. He did laugh at the black and blue and scraped legs that he saw on our active boy but he said it was all normal stuff with asprin. We have to schedule a yearly blood draw to make sure we establish a base line for the future but that will be in a separate appointment because I did not want Jasiu to correlate the pain of a blood draw with the same appointment with cardiology. <br />
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So we begin our summer on a good note. Next appointment in 6 months. <br />
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***</div>
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Now... I need to send a BIG THANK YOU TO ALL that supported us on our Annual Running for Hope 5K - All that walked with us and those that supported with your donations. It means the world to us that we can give back and help such a great organization such as Advocate "Hope" Children's Hospital and the Ronald McDonald House. We raised $480 - Thank you! We made great timing too - about 1:07 (give or take a few) We will be looking to increase our team next year.. (hint hint)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnbbMhVCckESFym_wyiAx36R7n0rFP05adx9miMuQHpYq-W_FsCP6Y-v-wmjmzgYNjbtZjJtB4w68wipxxtJz03L-jFv8iEUEMwvvSu3J4rJGpINQt7SPM12ZWa-4-gXBU2XNZktVwv1E/s1600/team+j.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnbbMhVCckESFym_wyiAx36R7n0rFP05adx9miMuQHpYq-W_FsCP6Y-v-wmjmzgYNjbtZjJtB4w68wipxxtJz03L-jFv8iEUEMwvvSu3J4rJGpINQt7SPM12ZWa-4-gXBU2XNZktVwv1E/s1600/team+j.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team Jasiu -2014</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ffUz98BA096SaIiGc6FxMj8yzPyTcn-75Q_o8Q52dMMZ0-EZNBBkNs5eb2Rdv2SGqSHL29C3Zrw9YDsfAmDSoMDognSfqqkGPOdFjVv3lPZ4rFC2aFHe6STz2NThMu8sobdx_mahRnc/s1600/team+j+-2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ffUz98BA096SaIiGc6FxMj8yzPyTcn-75Q_o8Q52dMMZ0-EZNBBkNs5eb2Rdv2SGqSHL29C3Zrw9YDsfAmDSoMDognSfqqkGPOdFjVv3lPZ4rFC2aFHe6STz2NThMu8sobdx_mahRnc/s1600/team+j+-2.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kid's Dash - 2014</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTC3mnQ2hdWilgTD6jcgqb8W5U_uDHba3xNovPLr6gheBVbUgxCwLUEH4o08V89hE3T-UthybS5ZWKr1HmdEPLSTvXhm1utoFKzJO552mgd5-AkbrIO-mmkXStAjhrWrP-RD5lxuGPgU8/s1600/team+j+-3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTC3mnQ2hdWilgTD6jcgqb8W5U_uDHba3xNovPLr6gheBVbUgxCwLUEH4o08V89hE3T-UthybS5ZWKr1HmdEPLSTvXhm1utoFKzJO552mgd5-AkbrIO-mmkXStAjhrWrP-RD5lxuGPgU8/s1600/team+j+-3.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our Superman was a bit over taking pictures at this point <br />
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THANK YOU FOR ALL YOUR SUPPORT !</td></tr>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-76660523438937283322014-05-13T20:08:00.002-07:002014-05-13T20:08:35.019-07:00Disneyland FunAt the end of April we took a big step forward with living a "normal" life and took our first family vacation that involved an airplane ride. To a very paranoid heart mama this is a big deal.<br />
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Though I was reassured by our medical team that being post Fontan and overall doing very well, Jasiu will do just fine. But that didn't stop me from worrying that it's possible that my kid, the one who likes to surprise us, would be the one with issues on the plane. However, Jasiu did great, better than great, he slept half of the plane ride to California there and back. <br />
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The early morning flight worked in our favor on the way there because even if you are forced to wake up at 5am, it makes it bearable that you are going to Disneyland and the kids both agreed and woke up with smiles on their faces that it was finally the day to go. We stayed half a mile from Disneyland and visited the parks for two days and then ventured down to Legoland in California for a day. The following two days we spent on the beach and sightseeing with family. We had perfect hot weather and went through two containers of sunblock because we went from 40 degrees F to 90-99 degrees F, and our skin didn't see any sun for about 5 months with the brutal Chicago winter barely ending. We were not about to get burned and be miserable for the duration of our trip. It was just amazing. The kids had fun, the smiles and amazement outweighed the wining while waiting in lines. This was a slight preview for the kids to the trip we will be taking towards the end of the year when Make -A- Wish grants Jasiu's wish and we go to Disneyworld for the week and make the whole week all about the kids and their love for all things Disney. <br />
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So without making this a wordy post, I will share our photos that capture the moments so well. <br />
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Perfect passengers passed out on the plane :)</div>
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Next update will most likely be after our June (semiannual) appointment. </div>
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Till then have a safe summer everyone. </div>
Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-19978717402126622862014-04-22T21:05:00.000-07:002014-04-22T21:05:26.094-07:00One Year Ago Today.... ... We handed our boy over for his THIRD open heart surgery, the Fontan. I am ashamed to say that that I forgot about the significance of this anniversary until a dear friend of mine, in the midst of her own personal loss, posted on my FB page "Happy Fontaniversary". In my defense, we are super busy right now, I'm changing jobs so I'm transitioning at work, and worrying about starting my new one. I'm getting ready for a conference I'm going to this week NPC- QIC, National Pediatric Cardiology Quality Improvement Collaborative. <a href="https://jcchdqi.org/" target="_blank">https://jcchdqi.org/</a> . Vacation planning (since we need to take a vacation in between my jobs because it's hard to take a vacation as a new hire and Easter was just last week, etc. Basically, life is hectic - a good hectic where we can worry about normal things and not looming surgeries or cardiology visits. But I don't know how it slipped my mind. <br />
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Last year we felt like we were starting all over, though we knew that this day was supposed to be the beginning of a "new beginning" for Jasiu and our family, that a Fontan is the last planned surgery, it was still hard to go through it. As any parent we were scared for our boy and for our family and all the what if's were just hunting our dreams every night. We didn't know what the recovery was going to be like this time around, what effects it would have on Jasiu physically and mentally, how he would react to his new circulation and to the trauma that he went through. It didn't help that we had a rough recovery and it seemed like months... well with the liquid restrictions and slow medicine weaning and diet changes... it was a good 6 months before we were back to "normal" but the time in retrospect seems like it was so long ago because we were blessed with the next 6 months of an even better version of Jasiu.<br />
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Once we weaned the meds, lifted diet and fluid restriction and his incision healed outside of scheduled appointments he was no different from when we went in. His attitude may have gotten spunkier and he did become more spoiled probably because of the experience, but we are lucky that this two year old memory is a positive in this situation. He was not hunted by the trauma and was just as happy of a camper once he healed. He gained a new found energy, I guess near 100% oxygenation will do that to your body and energy level. He stopped throwing up upon exertion and is tough to keep up with him. He flourished into the rowdy 3 year old that he is now. We have been so BLESSED beyond my comprehension.<br />
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I often struggle with this last part, we are blessed (especially around our heart related anniversaries) that Jasiu is doing so well, that he has no delays, no major setbacks and others are not so fortunate. Why can't all kids and families be blessed and be able to enjoy life with their babies. I'm so happy that I have both of my kids and can squeeze their tiny bodies for a hug whenever I want and there are parents who had to lay their little ones to rest. It is just so unfair and I can't comprehend this. I guess it's not for us to understand why things happen the way they do but we are only human and often question why things happen the way they do. I thank God for Jasiu every day, but why can't it seem more fair. I mourn for the parents that no longer have their baby, weather it was port Fontan, post Glenn or at any other point in their HLHS journey, it is so tough to see a child pass away. I silently pray for those families and continue to pray for our family that we may be blessed for as long as God sees fit. <br />
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-88112557362579732682014-02-25T20:12:00.002-08:002014-02-25T20:12:58.790-08:003 years !
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: Garamond;">3 Years!<o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><o:p><span style="font-family: Garamond;"> </span></o:p></b><div class="separator" style="clear: both; text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Garamond;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGKceCCxByAEAUR2pVW9g8-gylwWk7mUh7hfOkjyDBQGm4QWj8CDOPkBmmdWNKWvHuxpearxu_tZsflALKPvDBVxzGnF78QMuTVNoTQfqoIjfh8aygaC9lXOu6hEQRb_tgpLZQuuoU97A/s1600/DSCN6546.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGKceCCxByAEAUR2pVW9g8-gylwWk7mUh7hfOkjyDBQGm4QWj8CDOPkBmmdWNKWvHuxpearxu_tZsflALKPvDBVxzGnF78QMuTVNoTQfqoIjfh8aygaC9lXOu6hEQRb_tgpLZQuuoU97A/s1600/DSCN6546.JPG" height="240" width="320" /></a></span></b></div>
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<span style="font-family: Garamond;">I can’t believe that it has been three years already. Though
at times it felt like time was standing still, the reality is that it went by
so quickly. Too quickly.<span style="mso-spacerun: yes;"> </span>This past year
has been a crazy one, for about a quarter of it we were dreading handing him
over for another surgery and for another quarter of it we were battling the
aftermath of it.<span style="mso-spacerun: yes;"> </span>But in the end,<span style="mso-spacerun: yes;"> </span>Jasiu proved that he can surpass all
obstacles and began living his life to the fullest. Thriving really. Once he
was past all the restrictions, dropped the medicine and realized that his
little body is now as close to 100% oxygenated as it can be he began to show us
what he is capable of. Not that he was behind on any developmental scales, but
when I compare the boy we handed over and the fully healed<span style="mso-spacerun: yes;"> </span>ball of energy and ENDURANCE, it is like a
whole new world opened up to him. <o:p></o:p></span></div>
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<o:p><span style="font-family: Garamond;"> </span></o:p></div>
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<span style="font-family: Garamond;">In 3 years this boy has endured 3 open heart surgeries, 3
cardiac catheterizations, numerous echos, pokes, prods, IV’s doctor visits, you
name it. We expected it all, knew it was in the cards for this boy and now we
can only pray and hope that he can handle this new physiology for a LONG LONG
time. <o:p></o:p></span></div>
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<span style="font-family: Garamond;">BUT.. despite all that what you see is a 3 year old boy that
loves cars, trains, balls and sports, in all its glory.<span style="mso-spacerun: yes;"> </span>You see a smiling little kid or a tantrum
throwing little kid depending on the hour or minute, but there is no sign of
“half a heart” in this boy. I would say he puts in twice the heart into
anything he does. He absolutely loves his Polish heritage and loves his
“ciupaga” “kapelus” and “skrzypce” he loves dancing and singing in Polish and
can watch videos of the boys dancing to the point that about 50% of YouTube
viewings are probably from us for at least 2 different clips. He now has a
brand new favorite (thank you ciocia Ania for the introduction) which includes
highlanders doing acrobatic tricks, so now we have Jasiu also doing somersaults,
attempting cartwheels and standing on his hands… He can go on for hours. </span></div>
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<span style="font-family: Garamond;"><o:p>Though he can be a stubborn, feisty and sometimes outright naughty boy, he is still so sweet, cute and cuddly as ever [even if it is mostly at bed time]. We love him to the moon and back, stay strong our little man !</o:p></span></div>
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<o:p><span style="font-family: Garamond;"> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh097FwUYMWzQRaAxuOZ5-5HGlwIhzhHW0Zexi8YEy35dfKyXMjPk2lF4GJpnNN-hNRr_MgzMM3sHH-TD8iSK5s6wmNC9bsg51jxHvCi4TVEbdN2Hj62bNG1udDa26aUkH1P1cbCI1yZVc/s1600/DSCN6505.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh097FwUYMWzQRaAxuOZ5-5HGlwIhzhHW0Zexi8YEy35dfKyXMjPk2lF4GJpnNN-hNRr_MgzMM3sHH-TD8iSK5s6wmNC9bsg51jxHvCi4TVEbdN2Hj62bNG1udDa26aUkH1P1cbCI1yZVc/s1600/DSCN6505.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Party at Pump it Up </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXcYQ4zjKvDm5Rp1KBPt4PGs-GbwMUjMMyY04f6SkY-rOMqvY0ufiM2LcLDm8_HcJp0rMz5iWT1bSyQNSLqP1O0oe3Lg30BAUPMV4Cs1swsDEKsjeikvNNZWJHzI4fknMmy-F5dQBVTos/s1600/DSCN6531.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXcYQ4zjKvDm5Rp1KBPt4PGs-GbwMUjMMyY04f6SkY-rOMqvY0ufiM2LcLDm8_HcJp0rMz5iWT1bSyQNSLqP1O0oe3Lg30BAUPMV4Cs1swsDEKsjeikvNNZWJHzI4fknMmy-F5dQBVTos/s1600/DSCN6531.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cake #1 - (1st picture is with Cake #2)</td></tr>
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<span style="font-family: Garamond;"> </span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3iAVta0KqXh2NH7zErOWG0oBLlfdFiTYrcDxH64xIxXnm_l4wCPoDMPH5V9lFr6O2OdJ6HtUPCbOLzSDSJoZj4cHy0CyXJpCum0gFmA9OlGEOF6W2rV3jnEqHH1NJo04GENlLioYu0JI/s1600/DSCN6563.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3iAVta0KqXh2NH7zErOWG0oBLlfdFiTYrcDxH64xIxXnm_l4wCPoDMPH5V9lFr6O2OdJ6HtUPCbOLzSDSJoZj4cHy0CyXJpCum0gFmA9OlGEOF6W2rV3jnEqHH1NJo04GENlLioYu0JI/s1600/DSCN6563.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Specially hand made cake by Grandma - Cake #3 </td></tr>
</tbody></table>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-30415867357807286662014-02-07T06:43:00.001-08:002014-02-07T06:43:09.949-08:00Awareness - { CHD Awareness Week }<span style="font-family: Garamond;"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span><br />
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<span style="font-family: Garamond;">Almost everyone knows that February is “Heart” month, Valentine’s
Day is in February, the American Heart Association begins their “Go Red for
Women” campaign spreading awareness for the #1 killer of women, heart disease.
Stores are filled with red and hearts, and roses. <o:p></o:p></span></div>
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<span style="font-family: Garamond;">But did you know that February 7 through 14 is also
National Congenital Heart Defect Awareness Week, spreading awareness for the #1
killer of BABIES.<span style="mso-spacerun: yes;"> </span>Chances are that if
you have been reading my blog for the last few years or are Facebook friends
with me, you know, however the rest of the general public has no idea.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Garamond;">This is sad because statistically heart defects are one of
the most common birth defect affecting 1 in 100 babies (or 1 in 125 or 1 in
110, depending on which statistic you read, but it is still VERY common). That
is a lot of babies born every day.<span style="mso-spacerun: yes;"> </span>Heart
defects range from mild to severe, but it’s still a heart defect! I have<span style="mso-spacerun: yes;"> </span>met parents of babies with “just” a small
hole in the heart and you can see and sense the same fear, anxiety and sadness
in the parents eyes as Joe and I feel since the day we found out about Jasiu’s
“severe”/ “incompatible with life [without surgical intervention]” defect.<span style="mso-spacerun: yes;"> </span>It is heart wrenching to see your baby in any
sort of pain, but to see them post-surgery is almost unbearable. So many
parents walk this road and I as well as most of the “heart parents” I have met
on our 3 year journey were just as naïve as we were before their baby was
diagnosed, some of whom only found out only hours before their baby was rushed
to the operating room. Can you imagine the shock, we at least had 4 months to
“prepare” before Jasiu was born.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Garamond;"><b style="mso-bidi-font-weight: normal;">Why is this
important?</b><span style="mso-spacerun: yes;"> </span>Awareness is the main
purpose of this post. Though heart defects are not preventable, most happen
before the woman even knows she is pregnant, awareness that such an issue can
exist leads to asking the right questions at your 20 week ultrasound. It leads
to asking for a pulse ox test before discharge from the hospital (in many
states this is now required by law, including IL). <em>It leads to more funding for
research for treatment and even prenatal intervention.</em> <o:p></o:p></span></div>
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<span style="font-family: Garamond;"><b style="mso-bidi-font-weight: normal;">Awareness is Key to
getting the funding.</b><span style="mso-spacerun: yes;"> </span>I am beginning
to be active in the <a href="http://www.heart.org/" target="_blank">American Heart Association</a> and posed a question to my
contact about an awareness campaign for CHD Awareness, similar to the “Go Red for
Women” campaign.<span style="mso-spacerun: yes;"> </span>Though they are not
working on anything in that magnitude yet, the AHA<span style="mso-spacerun: yes;"> </span>is a good organization to donate. See the
flyers that they sent me with information.<span style="mso-spacerun: yes;">
</span>Another great organization is the <a href="http://www.childrensheartfoundation.org/" target="_blank">Children’s Heart Foundation</a>, though a
smaller organization, nearly 100% of their funding goes to pediatric
cardiovascular research, or <a href="http://www.mlhchicago.org/" target="_blank">Mended Little Hearts</a>, I can go on. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Even
though when you read how much money goes to research, it is still <b style="mso-bidi-font-weight: normal;">greatly</b> <b style="mso-bidi-font-weight: normal;">underfunded</b> compared to other diseases, there are so many great
minds that are developing new techniques and new studies that they deserve
equal funding.<span style="mso-spacerun: yes;"> </span>I am not undermining
cancer or other diseases, just wish there was equal awareness. Here is a piece
by a fellow Heart mom, it’s worth your reading, she puts it so well. <a href="http://accidentalpurpose.com/february-apples-and-oranges/" target="_blank">Blog: Accidental Purpose : Apples and Oranges</a></span></div>
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<span style="font-family: Garamond;">You may ask,<strong> ‘why do we need even more funding</strong>, wasn’t Jasiu’s
CHD “incompatible with life” and now he and many kids like him are thriving?’.<span style="mso-spacerun: yes;"> </span>Well glad you asked – We need more funding
and research because even though Jasiu’s is thriving, the three heart surgeries
did NOT fix his heart. All it did is prolong the life of his single ventricle. The
hard truth, though I hate focusing on it, is that the Fontan is likely to fail.
Current studies and data shows that the body does not like the Fontan
physiology, his vital organs are doing extra work, they are strained and it
wreaks havoc on the entire system over time.<span style="mso-spacerun: yes;">
</span>Honestly it can happen tomorrow or years from now but chances are it
will at some point and the current options at that point are medication and/or
transplant. That is not a good option for many many reasons that I will not go into at this time. So we need more
research because doctors and researchers are working towards other options,
some options that only a few years ago we never even thought were possible but
they are becoming a reality because of funding and supporters like you. <span style="mso-spacerun: yes;"> </span>These single ventricle kids need a “cure”, a
better option, and it can only be done through awareness and funding. <o:p></o:p></span></div>
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<span style="font-family: Garamond;">With Awareness comes funding, with funding comes research,
with research comes hope, with hope comes life!<o:p></o:p></span></div>
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<span style="font-family: Garamond;">So this Friday wear RED to kick off and show your support
for CHD AWARENESS and for Jasiu. <o:p></o:p></span></div>
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<span style="font-family: Garamond;">Being able to spread awareness through him is such a<span style="mso-spacerun: yes;"> </span>blessing because though HLHS is incompatible
with life on it’s own, with the help of God, great surgeons, hospitals,
research and supporters like you, he is able to live – THRIVE with only “half a
heart” but as thankful as we are, we are still hoping for a full “cure” because as parents we want what is best for our kids.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiHaG5c2OUTHTAAMCv9knskWWcwNhhctObRk6xXEuJlA8FJnYqY_pIbuYXXlUswuN5sYqUIgiDpW9SAXdsd8zsthRtCTzxUXxRTLQ1oUHfaa2jNh1qKF5rNX3g-EHIA2aASaFh-QF2tlo/s1600/DSCN6394.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiHaG5c2OUTHTAAMCv9knskWWcwNhhctObRk6xXEuJlA8FJnYqY_pIbuYXXlUswuN5sYqUIgiDpW9SAXdsd8zsthRtCTzxUXxRTLQ1oUHfaa2jNh1qKF5rNX3g-EHIA2aASaFh-QF2tlo/s1600/DSCN6394.JPG" height="480" width="640" /></a></div>
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<span style="font-family: Garamond;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEios3Wlh-d4GzMx2ka08bIeUh9AUYAJjg9iE91-lMJjKS49LuiTcBGtRsdNCmO0_6Y8UuA0fr2Z04A-DfIxgZxZhoasK-OC31_XyP-AXOz3-TVjp9l8LcmrPfRqMNh8x-27wnUwyQc2DaI/s1600/DSCN6391.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEios3Wlh-d4GzMx2ka08bIeUh9AUYAJjg9iE91-lMJjKS49LuiTcBGtRsdNCmO0_6Y8UuA0fr2Z04A-DfIxgZxZhoasK-OC31_XyP-AXOz3-TVjp9l8LcmrPfRqMNh8x-27wnUwyQc2DaI/s1600/DSCN6391.JPG" height="300" width="400" /></a></span></div>
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<span style="font-family: Garamond;"><strong><span style="font-size: large;"><em>Thank you and spread
the awareness we owe it to all these kids battling this awful disease.</em></span> <o:p></o:p></strong></span></div>
Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-17363645210087565192013-11-30T12:49:00.001-08:002013-11-30T12:49:20.178-08:00Bad blogger ... long overdue updateSo I have meant to update a while ago, like in October but we have been quite busy. I think I will update in pictures instead of writing a whole bunch. <br />
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In early October Jasiu fully potty trained during the day so we decided that he should be in a big boy bed to try to get him to night time potty train, so he can get up and get us when he needs to go. <br />
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Step 1 - take down the crib face . <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6o_WwV9vEN-dugC9s9oP2bhoRNWIopbH2pV5rK8rUw7xp2fo9ojmaIkSIv8di68Ycns9qn0kJ1ux50OAA-02NmK5Su07vEQpDmYhaN2XnJdotEsygeg-UxztxIQbfVXFd_G2MRa6NHhk/s1600/20131005_003202.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6o_WwV9vEN-dugC9s9oP2bhoRNWIopbH2pV5rK8rUw7xp2fo9ojmaIkSIv8di68Ycns9qn0kJ1ux50OAA-02NmK5Su07vEQpDmYhaN2XnJdotEsygeg-UxztxIQbfVXFd_G2MRa6NHhk/s320/20131005_003202.jpg" width="320" /></a></div>
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But he kept falling out so...</div>
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Step 2 - mattress shopping.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmZ_ShmTyD7ALUJ7IsUfU9SrZlASreLMl9Vl-dz_zDz3DpqnhQTMTieRHkzA6ObH-i6zzgBj3txx1gt_P4Uxwa40R12uDvrUBtM8V9lwy1fSScDT27XoXp7_JNb3kA4gzjJJPvxZNlOyU/s1600/20131011_105626.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmZ_ShmTyD7ALUJ7IsUfU9SrZlASreLMl9Vl-dz_zDz3DpqnhQTMTieRHkzA6ObH-i6zzgBj3txx1gt_P4Uxwa40R12uDvrUBtM8V9lwy1fSScDT27XoXp7_JNb3kA4gzjJJPvxZNlOyU/s320/20131011_105626.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisF_6TzvYP0ymKVIh06AQfj5tWBMq6Wwt-Z-7mbZJrkXNa6fOPLI5XZU34xidAhHWearACDtHWJG9KRDt9dQqgFaGeNbGvGfn5YKTO6T98bACQ5TrsmCdj9hVCcGIraR3K8x13unJLtWo/s1600/20131011_110654.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisF_6TzvYP0ymKVIh06AQfj5tWBMq6Wwt-Z-7mbZJrkXNa6fOPLI5XZU34xidAhHWearACDtHWJG9KRDt9dQqgFaGeNbGvGfn5YKTO6T98bACQ5TrsmCdj9hVCcGIraR3K8x13unJLtWo/s320/20131011_110654.jpg" width="240" /></a></div>
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Step 3 - insert said mattress on the floor</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfb82lnuY3JJaa7duO58ZlJCHgWnojy3N5aMbZVk4aH_tzWvHZpLEFnKdOD0ZCNYdgBHTc0rb_J5qVoOVwn2d6e_iU7b8tBSP2VUu4Poz0Se9UOT4_bLxkRF6cCZvsJXHjt4MmqDeuIHk/s1600/20131012_234015.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfb82lnuY3JJaa7duO58ZlJCHgWnojy3N5aMbZVk4aH_tzWvHZpLEFnKdOD0ZCNYdgBHTc0rb_J5qVoOVwn2d6e_iU7b8tBSP2VUu4Poz0Se9UOT4_bLxkRF6cCZvsJXHjt4MmqDeuIHk/s320/20131012_234015.jpg" width="320" /></a></div>
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Step 4 - when he got used to the idea - set up the mattress on a base and we have ourselves a big boy room and a big boy !!!</div>
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So we have December and we are half and half with dry and wet nights, so I call that progress. For 2 years and 8 months, I think we have a pretty easy potty trainer. </div>
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Than we were in End of October and we went to pumpkin patch and trick or treating at the mall due to rain. </div>
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Then in November we got a much needed hair cut...</div>
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Mid November the kids had their first Polish Dancing concert and they decided they want to try violin lessons. So starting next week we will start and see how it goes. </div>
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Then we had a very nice Thanksgiving (of which I have no pictures on my devices, so we have to ask Ciocia Aga for them) and then we left for our mini Thanksgiving getaway !</div>
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This sure beats the Black Friday crowds ! </div>
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They also got an extra treat by seeing a Thomas live show and saw all the Christmas decorations at Grand Geneva !</div>
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Emily even got to write a letter to Santa and dropped it off in the mail box </div>
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In other news, we have lost the pacifier and it was only about a 2 week process and now Jasiu doesn't even think about it or ask for it. More progress. </div>
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Now, in December we will have a busy month as well and right smack in the middle of the month we have a full cardiology appointment. On the schedule we have lab, echo and general visit. Let's pray we get an all clear and we enjoy our Christmas season. I hope everyone had a very Happy Thanksgiving, this year and every year we have a lot to be thankful for since we are 7 months post Fontan and doing fabulous ! Let's hope the test prove so the same. </div>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com1tag:blogger.com,1999:blog-2890813483041497242.post-75104853565813183682013-09-25T06:38:00.002-07:002013-09-25T06:42:39.862-07:00Heart Picnic ~ 2013
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<tr><td class="tr-caption" style="text-align: center;">Jasiu was a little shy</td></tr>
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This past weekend was our annual Heart Institute for Children at Advocate picnic and we had a blast. This event is sponsored by Dr. Illbawi, head of the Pediatric Cardiac Program, and Advocate “Hope” Children’s Hospital and it is a blessing to be able to attend it each year. <br />
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This year made is extra special since Jasiu was so fresh out of surgery. Only a few short months ago we only got to see them in scrubs and white coats. We truly appreciate the time that Dr. Illbawi along with his entire team of surgeons, cardiologists, nurses and staff (those who aren’t working the shift that day) take time out of their personal lives and come out to see the patients who get to see them in regular clothes and talk about things other than medical issues. Dr. Illbawi himself talks to each individual family, holds the <strike>patient</strike> child, because outside of the hospital walls, these “patients” are truly just children, trying to be like everyone else, young and old, just trying to survive and live a life that was only possible because of the medical intervention of this team. And we are parents, not “mom” and “dad” as often just labeled at the hospital for ease of the staff, just want to thank them and shake his hand for literally touching and fixing their child’s heart. It truly is a celebration of how far each of our <b>Heart Hero’s </b>has come and the extreme milestones that they have surpassed along with their families. Also it is a celebration of and a way for the families to thank, our wonderful medical staff at our hospital who take care of our kids when we ourselves as parents cannot. <br />
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Finally, we get to see our PSHU and Fontan buddies, those who we also just have seen in their hospital beds and their parents tired and restless as they sat by their child’s side. We got to see friends both old and new and Mia, the little girl who had her Fontan a few hours before Jasiu. It was great to see her and hear that she is attending Kindergarten despite of the hard time she had during recovery, it is really inspiring. <br />
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All of our kids are so strong beyond our wildest imagination and they have one common denominator, Dr. Illbawi, the calm poised generous man who made it possible to give our children a chance at life.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQHCP5IX-sj4VwiRTeDIlCLregUyJRBzIN6fmTgMdNAfDTP5qDw8nnIgwEL1S3ApBZIUnZdtK7zZlfIRIralRvaMEk1DtMlZRWRje_5EvKvcjyW4E4M9Y3YVQBXoHX0y7n4SxebsNyEiQ/s1600/DSCN5689.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQHCP5IX-sj4VwiRTeDIlCLregUyJRBzIN6fmTgMdNAfDTP5qDw8nnIgwEL1S3ApBZIUnZdtK7zZlfIRIralRvaMEk1DtMlZRWRje_5EvKvcjyW4E4M9Y3YVQBXoHX0y7n4SxebsNyEiQ/s400/DSCN5689.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Emily is a natural farm girl ~ loves animals</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisOdAJ2Aw9JyHd4h2erKmymF1y2zPk3Hb0QPEtdmK9z93mgJCwQtDZi4h9aWO96sxbHlv0fp_vjZcTQ0py_x7pgDcJKTmkZ76_kzJOEe-2AHTLSQ1-TSWieero0eqFIQ3K91M3xEu3JM8/s1600/DSCN5695.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisOdAJ2Aw9JyHd4h2erKmymF1y2zPk3Hb0QPEtdmK9z93mgJCwQtDZi4h9aWO96sxbHlv0fp_vjZcTQ0py_x7pgDcJKTmkZ76_kzJOEe-2AHTLSQ1-TSWieero0eqFIQ3K91M3xEu3JM8/s400/DSCN5695.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">LOVED pony rides</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsLH7YkgY-EZeTfdLhd_lsHXrL_GTmIDnugc6Ce-LObW-FjSUN7lHXsUccx44TpWGSBWNRIFiKj1P-dBiB2Ydn5VSkbRNgMSkKNtIwcOmn_cJXrGTZgi_Viz3ZeLXzRkq_AiyLLK1PovE/s1600/DSCN5698.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsLH7YkgY-EZeTfdLhd_lsHXrL_GTmIDnugc6Ce-LObW-FjSUN7lHXsUccx44TpWGSBWNRIFiKj1P-dBiB2Ydn5VSkbRNgMSkKNtIwcOmn_cJXrGTZgi_Viz3ZeLXzRkq_AiyLLK1PovE/s400/DSCN5698.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"loved pony rides"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6QULB2AH5y6pisqcj3P1dtckunqm4bGiVFpmcRV0ixf91QponaQuBVaX5Ujx4P7cI72XWROyMHTLu9pr0sKpWgohxLIZEaIoKlBvpQmfcS3k4Fh9Q0Hu8Jc1NyJ7VQwNQUHTyPp71JVQ/s1600/DSCN5715.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6QULB2AH5y6pisqcj3P1dtckunqm4bGiVFpmcRV0ixf91QponaQuBVaX5Ujx4P7cI72XWROyMHTLu9pr0sKpWgohxLIZEaIoKlBvpQmfcS3k4Fh9Q0Hu8Jc1NyJ7VQwNQUHTyPp71JVQ/s400/DSCN5715.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"wait I'm not done with you"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNrqN6FePfMhyphenhyphenAX_Ul_hrJEG5ymHpjW4PRvqm9QTxqr32bdxnvsu2T5wy0ZrT78q-gGvSzPy3YD3De4HKX-jWcS1wNncfAbUiwkBvoD8wBGjwPYlBkMFW86SaGp4Wq4dp-ATHiSXMudpw/s1600/DSCN5718.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNrqN6FePfMhyphenhyphenAX_Ul_hrJEG5ymHpjW4PRvqm9QTxqr32bdxnvsu2T5wy0ZrT78q-gGvSzPy3YD3De4HKX-jWcS1wNncfAbUiwkBvoD8wBGjwPYlBkMFW86SaGp4Wq4dp-ATHiSXMudpw/s400/DSCN5718.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">lunch time</td></tr>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0tag:blogger.com,1999:blog-2890813483041497242.post-84648624526142402352013-09-19T10:04:00.000-07:002013-09-19T10:04:15.723-07:00Quick Cardio UpdateJasiu had a cardiology visit on Friday 9/13 and I forgot to update until now, when our awesome Nurse Practitioner called to follow up and see how John is with his new meds change. Did I forget to say how much I love our cardio team ! They are really wonderful and so nice and caring, I will miss them now that our visits are getting spaced out even more, but this is for the best of course so it will be a good change. This last visit had 6 weeks off and our next appointment is in THREE months. <br />
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Onto the update... John is doing excellent with his Fontan. His heart function is good, O2 saturation's are great and his chest x-ray is clear. From his last echo, there was some small concern over the narrowing of his aorta, where it was repaired 2.5 years ago during his Norwood surgery so we had an impromptu echo just to make sure it's not getting worse. Side note: this is not new, we have seen this on echo since the beginning and even went into the cath lab a year and a half ago to make sure it does not need a stint to keep it open and at that time the narrowing was not significant enough to warrant a stint. So it very well may just be that Jasiu's aorta is a bit more narrow and that's just another thing making Jasiu unique. But to be on a safe side, as Dr. H likes to be, we did the echo to check it out. I don't mind at all because it also puts me at ease a bit to know things are looking good in there. And they are so far it is not getting any more narrow than it was. I had a long talk with Dr. H about Jasiu with his various "uniqueness es" and he decided that we will be slowly weaning the diuretics these next two weeks to go down to none and wrote a script for a diuretic, just as needed, if I notice any prolonged puffiness once in a while - Read: more than just the usual morning puffy eyes that usually disappear within the hour. But his diuretic of choice is Matolizone, not Lasix, since we don't want to chance Lasix not working the way it didn't post Fontan. Next he decided that Jasiu will also benefit from going on a small dose of Enalapril, heart medicine, that will help his blood pressure and the pumping of the heart. Many kids with HLHS are on enalapril as a "maintenance" drug to help keep it strong. So after we are done with the diuretics, I still have a new medicine in the fridge until the dose is big enough to allow for pill form instead of compounding into a liquid (which must be refrigerated). So we have been given a 3 month pass and will do a whole work up again, this time we will be on the echo schedule so the appointment should be over quicker, this one lasted 3 hours! (but if you want the best I think a few hour appointment is a small price to pay in the long run). <br />
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A more fun thing to look forward to is another picnic with all of our heart warriors and medical staff hosted by our very own Dr. Illbawi. Jasiu has been practicing so that he can say Illbawi when he finally meets him. I'll be sure to post pictures. Thank you for your continued prayers and support.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6k526oB7D1IGWAexaVgLfyoRGOfcD0RDXgIzF97_H7ioSm8V-c4rJgW2QAm_52eA2cgICmdgs88IZovcEmfFlkkiKmtfvrlxUS0DuCzguQOiPZPWCoJv5W3bQxxuruSp_0frYxCChTOM/s1600/20130917_180614+(2).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" closure_lm_597575="null" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6k526oB7D1IGWAexaVgLfyoRGOfcD0RDXgIzF97_H7ioSm8V-c4rJgW2QAm_52eA2cgICmdgs88IZovcEmfFlkkiKmtfvrlxUS0DuCzguQOiPZPWCoJv5W3bQxxuruSp_0frYxCChTOM/s320/20130917_180614+(2).jpg" vsa="true" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a walk/ jogg pit stop with mommy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP4txARZl_nxYRmThNmCJCDr4F84yE-_5ZT3waQlWVOe1tSQN8pNytMlekosES9ofO1zzRK5Nvc21op19j9wi6YxJNto2V13MPfg6Iqybq2dE5cNC9qBgQ7xG8tFqpWfKx8GFeeQnrADI/s1600/20130913_114527+(2).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" closure_lm_597575="null" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP4txARZl_nxYRmThNmCJCDr4F84yE-_5ZT3waQlWVOe1tSQN8pNytMlekosES9ofO1zzRK5Nvc21op19j9wi6YxJNto2V13MPfg6Iqybq2dE5cNC9qBgQ7xG8tFqpWfKx8GFeeQnrADI/s320/20130913_114527+(2).jpg" vsa="true" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">3 hour appointments are exhausting - waiting for Dr. H. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLFLXaO2F0lEJI9x65sYy0gc1STBnO4srnOwuamZFT4gsmHQH6d3_q4YxxPx_rp1osVfVh76GZX7KIqDocqnm8oJmXoPTFBvReMNlEqeHpLvnqibx6cQHb45zdwJxgmHQhzu9PB0UEKps/s1600/20130913_093818.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" closure_lm_597575="null" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLFLXaO2F0lEJI9x65sYy0gc1STBnO4srnOwuamZFT4gsmHQH6d3_q4YxxPx_rp1osVfVh76GZX7KIqDocqnm8oJmXoPTFBvReMNlEqeHpLvnqibx6cQHb45zdwJxgmHQhzu9PB0UEKps/s320/20130913_093818.jpg" vsa="true" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">keeping entertained</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4WwjP6ey5gxyOfA5aeDwHvSu34dQwWzLHTRA0P18sBkoi0KIIxXh-7faAqVLIjsZYsAyyV4RQJQZRGUNtS-HHZnfkrV5DCcgEtxC048r2vL32i_w5KXwK1rnD9ktHPJ52v0GABvXVRm4/s1600/20130913_090302.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" closure_lm_597575="null" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4WwjP6ey5gxyOfA5aeDwHvSu34dQwWzLHTRA0P18sBkoi0KIIxXh-7faAqVLIjsZYsAyyV4RQJQZRGUNtS-HHZnfkrV5DCcgEtxC048r2vL32i_w5KXwK1rnD9ktHPJ52v0GABvXVRm4/s320/20130913_090302.jpg" vsa="true" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">favorite part X-rays - say cheeeeeese</td></tr>
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Kathy Khttp://www.blogger.com/profile/00230858981965321913noreply@blogger.com0