tag:blogger.com,1999:blog-61136415749753216162024-03-04T21:02:11.046-08:00~Our 'Young Warrior' Evan~ Living with Harlequin Ichthyosis.....A Mommy's mission to raise Ichthyosis awareness...De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.comBlogger137125tag:blogger.com,1999:blog-6113641574975321616.post-34612695660983123392016-08-18T05:33:00.002-07:002016-08-24T18:07:32.122-07:00Catching up!!Wow it's been a while! I know I say that each time but blogging these days is tough for me to accomplish! These boys keep me on my toes for sure! And when I have a free moment I tend to put my feet up and close my eyes! <br>
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A LOT has happened since I last wrote. First and foremost, Evan is now a SIX YEAR OLD!!!! We celebrated his birthday on June 9 and then had his whole class over for a party that following weekend. He was a very excited and happy kid to have all of his buddies come play and celebrate. </div><div><br></div>
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After our many birthday celebrations, Evan finished off his school year as a Kindergartener. So he is officially a first grader! Ahhhhh! I can't believe it! Evan's school is very special. He is surrounded by love and support and we couldn't ask for a better community to live in. This year, as the 6th graders moved up to the high school, they choose someone to dedicate their yearbook to. And can you take a guess at who they chose?? Check out this video. My little man walking up to accept the honor!!</div>
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(Sorry about the quality, the sound is all you really need!)</div>
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After the school year was over we kept busy doing summer activities. We took a family vacation to the Cape and then up to the Green Mountains in VT to camp. Evan just LOVES to camp. I was always a bit worried how we would work it out considering, camping isn't the cleanliest experience. Fortunately our good friends live a mile from a beautiful camp area. We have the experience of true camping with a home and bath tub at our fingertips when need be. </div><div><br></div>
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Between trips to the lake, trips to Action Wildlife, adventures walking through the grocery store to pick out snacks (which is his first choice) and the therapy/summer school he attended, we kept pretty busy. Now the summer is winding down and we have a few weeks left to enjoy. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiryDrsMjAyEOp0Dj8kv4VcnUy9Ufr2GDaKAkoqNWsInD_nI7BajXc7bqtdwIChcT0P_NonH55_7NlNtv_QAD2DujQrvQEeSeA8yVDZt4n5j-mxhBjoSK4PdDyIPnyqBYBA_m5DDdGuSfP0/s640/blogger-image--170486814.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiryDrsMjAyEOp0Dj8kv4VcnUy9Ufr2GDaKAkoqNWsInD_nI7BajXc7bqtdwIChcT0P_NonH55_7NlNtv_QAD2DujQrvQEeSeA8yVDZt4n5j-mxhBjoSK4PdDyIPnyqBYBA_m5DDdGuSfP0/s640/blogger-image--170486814.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKdA7dKGYq8W8wnX88zczGLq8SF5Zc_x5Rf3yInhYPW2k0CK4UYt6gMyhqTTCwvjZHXzKwxRv_usytexLG4Kla47Q_zsV4Om5dssWL7WOuW8iqN4TObIdEwXRDirchAZaN7diVG4JQ3ifC/s640/blogger-image--1911929757.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKdA7dKGYq8W8wnX88zczGLq8SF5Zc_x5Rf3yInhYPW2k0CK4UYt6gMyhqTTCwvjZHXzKwxRv_usytexLG4Kla47Q_zsV4Om5dssWL7WOuW8iqN4TObIdEwXRDirchAZaN7diVG4JQ3ifC/s640/blogger-image--1911929757.jpg"></a></div><br></div>
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Another very exciting change for Evan is that he finally got his wheelchair! He's been very anxious to get it and couldn't be happier. I am so proud of him and how well he can maneuver this thing! He will be bringing it to school as his main source of independence. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6lJ4Yf0gxXxRkmG1t4I1q4iBgivuO2FXFrHkLJ0IGx5flkb3KgRiHB9o3FCErwERvbbBuVf1FxEnYWnVJBvDba8BnCJVfvmLehoGI0jeNVZumUXtP9hV-_WOMSHXkG0Atr3vZaGN74yNN/s640/blogger-image-293328113.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6lJ4Yf0gxXxRkmG1t4I1q4iBgivuO2FXFrHkLJ0IGx5flkb3KgRiHB9o3FCErwERvbbBuVf1FxEnYWnVJBvDba8BnCJVfvmLehoGI0jeNVZumUXtP9hV-_WOMSHXkG0Atr3vZaGN74yNN/s640/blogger-image-293328113.jpg"></a></div><br></div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com3tag:blogger.com,1999:blog-6113641574975321616.post-70110487896964672212016-05-31T08:56:00.002-07:002016-05-31T09:01:00.671-07:00Ichthyosis Awareness Month 2016It's Ichthyosis Awareness Month! I know I am about 30 days late, but better late than never! I have been without a desktop for months and writing on the blog using a small device is rather challenging to do! Nonetheless, here I am trying to do what I set out to do by starting this blog.<br />
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<b><span style="font-size: large;">Learn more about ichthyosis and how you can help at the <a href="http://www.scalyskin.org/">FIRST Skin Foundation</a>!!!! </span></b><br />
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Here is an update on the boys:</div>
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Evan is doing amazing! He is wrapping up his Kindergarten year with a bang! He started the year off with little mobile independence and now he is RUNNING around the halls in his walker. He is probably the only kid in school who is "allowed" to run! He has accomplished his Kindergarten goals academically and has pretty much accomplished his gross/fine motor goals as well. Evan continues to have a extreme love for school and I can only assume a lot of that love is thanks to the amazing care he receives from his aide, nurse and teachers. </div>
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As for Evan's ichthyosis, it is the same as last year, the year before and the same as he was born. Ichthyosis does not change or get better over time. Luckily we have been able to avoid any serious skin infections. I like to attribute that to our obsession with keeping his skin in its best condition possible (bathing 2x/day, min of 5 head-toe aquaphor applications/day and intense exfoliation: keeping him as scale free as possible). We still battle with the dry conditions in the winter and the heat, now that summer is at our doorstep. I honestly wish the AC fairy would come and magically install central air in our home! Fighting with window units all summer is quite stressful and nerve wrecking. But as stressful as it can be, ichthyosis is our normal and something that just comes with motherhood, for me.</div>
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Evan is delighted to be a big brother and is such an amazing brother to his baby bro. Though the tables are turning a bit since Cenzo is able to walk and move about. Evan, still, has never seemed to be frustrated or discouraged that his baby brother is more mobile than he is. Evan only encourages Cenzo and cheers him on when he accomplishes the milestones that come so easy to most children. Evan truly is such an amazing child!</div>
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Side note on Cenzo: after his most recent cardiology visit, he "graduated" to annual check ups rather than quarterly! Everything seems to be the same (with the tumor) and not causing any issues for his heart! Good news on that end! Phhheeeewwwww!</div>
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Now for your viewing pleasure, my boys rocking out to Evan's favorite song! </div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com0tag:blogger.com,1999:blog-6113641574975321616.post-61515302183109444062015-12-08T07:50:00.000-08:002015-12-08T18:03:30.634-08:00Our MicroSilk Tub: Part 2The last time <a href="http://ouryoungwarriorevan.blogspot.com/2013/10/our-microsilk-tub.html">I wrote about our tub was in October 2013</a>. We got our MicroSilk after we bought our first home in 2011. Evan was only months old when he tried the tester tub and a year old when we had our own. So MicroSilk has pretty much always been a part of his routine. We have had our tub for over 4 years and I now can say that Evan is finally using it "on his own". Since Evan has been behind on the development track, could not sit independently for over 3 years, it was challenging to give him a bath in the MicroSilk tub. Even with the proper adaptive equipment for him to sit in, it was still nerve wrecking having him in a huge tub full of water. Then when I was pregnant in 2014, it made it impossible for me to reach and lean over to bathe him in the MicroSilk tub.<br />
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Fortunately with a new baby came some milestones for Evan. One huge milestone was his new found love of "crawling". He started army crawling around the house just at the perfect time; just when he could use a little independence as the new baby arrived. Another huge milestone was THROWING AWAY (recycling) the baby tub. The poor kid still got one bath a day in the baby tub, mainly because he was small enough to fit in and it was easier for me to bathe him without bending over. He obviously was getting uncomfortable in the little tub so we asked him if it was ok to get rid of it. He had no objections.<br />
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Since this spring, Evan has only gotten a MicroSilk bath and many times two of them a day! Thanks to his progress in the motor department, he is stronger and sits much better and safer in the tub than in years past. He has also grown a little bit, so now the water level isn't an issue when sitting on the tub floor or in an adaptive seat. And boy does this kid love his tub!<br />
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<b>The benefits</b>:<br />
As I have written before, it is undeniable that this tub has benefits for the maitnence of his skin. The small oxygenated bubbles help with exfoliation and easily remove small scales without pain. The tub looks like a shaken snow globe within minutes of starting! Scales seem to lift easier and it is a much gentler way of exfoliating rather than aggressive rubbing with wash clothes or mitts. The oxygenated water must be a benefit to his skin becuase it is very noticeable when he gets a bath in a regular tub while on vacation or visiting family for the night.<br />
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Evan is in the MicroSilk 2x a day with a minimum of 12 baths per week. Many weekend nights we tend to "skip" baths due to busy schedules and becuase Mom and Dad need a little break. On weekday mornings he only recieves one cycle in the tub (20-30 min) due to our tight schedule- getting ready for school. On school nights, Evan takes a very long bath with at least 2 MicroSilk cycles and rarely gets out of the bath before an hour of time. As wonderful as this tub is, Harlequin Ichthyosis is relentless and that skin grows almost too fast to keep up with!<br />
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Another benefit of this tub is how it keeps the water at a constant temperature. To have a kid who can't regulate his body temperature, in a bath tub for an hour, would be tricky without this feature (never mind draining our water tank!) Thanks to the tiny oxygen rich bubbles, it keeps heat energy in the water maintaining the temp as it was filled.<br />
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<b>Tub Maitnence:</b><br />
This tub is known as a "green" tub. No cleaners or additives are needed when using the tub. But since Harlequin Ichthyosis is so severe, I tend to continue with my typical maitnence routine before, after and during the bath. While using the tub I will occasionally use a splash of bleach as directed by our dermatologist. Since Evan does not have the necessary proteins on his skin to kill harmful bacteria, it is important to use this in any type of bath. We use to use baking soda in every bath but now only use it in non MicroSilk tubs.<br />
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Before and after every bath I wash the tub with dish soap. I want to be sure the bath is clean before using. Afterwards, dish soap helps to cut the greasy Aquaphor and skin residue caked on the walls and floor of the tub. I will occasionally use bleach as needed while cleaning out the bath.<br />
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To maitnence the jets, <a href="http://www.jasoninternational.com/store/care_essentials.aspx">Jason sells a green cleaner</a> that can be run through the MicroSilk. I usually do this every few months or when I notice the cycles will not run a full 20 minutes. As we have a first generation MicroSilk, we also unscrew and clean out the filter every bath or the jets will not turn on.<br />
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<a href="http://ouryoungwarriorevan.blogspot.com/2013/10/our-microsilk-tub.html">Read more about our experience with MicroSilk here!!!</a><br />
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<a href="http://www.jasoninternational.com/wellness/microsilkfundamentals.aspx?">Learn more about the science of MicroSilk Here!!!</a></div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-88984731792853081572015-09-29T07:50:00.000-07:002015-09-29T07:57:52.779-07:00The Kindergarten LifeI can't believe my boy is in Kindergarten. And it is no surprise that he LOVES it. I am so grateful for Evan's love for school; interacting with his peers, independence from home and his love & dedication to learning! He is so proud of his accomplishments whether a worksheet completed, drawing created or story to share. We are very fortunate to live in an amazing community and that Evan's peers are so kind, warm and accepting.<br />
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Dancing in music class!</div>
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The biggest change going into Kindergarten was getting use to a FULL DAY of school. Since Evan attended the same school for Pre-K 3&4 we had already gone through the process of <a href="http://ouryoungwarriorevan.blogspot.com/p/school-suggestions.html">transitioning into a school setting</a> (were ichthyosis is concerned). But I was a bit worried how Evan would manage on an energy level for an entire day, as well as how his diet would be compromised from the "distractions" in the cafeteria. Luckily his energy has been great and to my surprise he comes home seemingly energized! Though all the fun of eating lunch in a cafeteria full of kids has been more enjoyable for Evan than Mommy. Eating well has never been his forte but we are still working on it!</div>
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Math center on the carpet!</div>
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As far as his skin care goes while in school, I have to admit that we have the best crew there is! Being away for 7+ hours compared to 3 is a big difference when taking care of his skin. And yet again we are extremely lucky to have a nurse, aides, teachers & staff that are all working together to make sure he stays comfortable and safe. He now gets to enjoy lunch, recess and specials at school so planning for his skin in different environments, like the temperature of the cafeteria or gymnasium to what kinds of paints he can have on his skin in art class, have been considered.<br />
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When it's too hot, Evan and a few buddies eat in the classroom!</div>
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All in all I have nothing to complain about. Evan has gotten into a good routine, now, being in school for a full day. I know he is in good hands and his skin is the "least" of my worries while he is at school. He comes home happy, excited and has lots to share about his day. I can only hope his enthusiasm for school will continue throughout the years and he will continue to "jump for joy" when the bus pulls up!</div>
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Evan's favorite thing to play, GROCERY STORE!</div>
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**Side note** I usually offer to go into the classroom in the beginning of the year to talk about Evan's skin with his classmates. Since most of the students know Evan already and they have accepted him for him, I decided to talk about ichthyosis from more of a biological standpoint than talk about differences (which I did speak about on the preschool level). I did this mainly because Evan is older and more aware now and I didn't feel like it was necessary to have a discussion about how "different" Evan was when he really isn't. He's a kid just like all of his classmates.</div>
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Video: <a href="https://youtu.be/qAQ5HHSvzqo">Explanation of Ichthyosis to Elementary Students</a></div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com0tag:blogger.com,1999:blog-6113641574975321616.post-91802966495209385772015-09-02T08:41:00.000-07:002015-09-02T18:46:38.196-07:00Goodbye Summer! Until Next Time!Wow summer flew by! And we had quite a full one at that! So many fun memories, vacations and time spent at home with the family. Evan just headed out the door for his first day of Kindergarten. My emotions are going haywire but I am so excited for him and can't wait to hear about his day.<br />
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First on the list of summer fun was a trip down south to the Carolina beaches. Our entire family and extended family gather there each year. This year Joe was unable to join us again, due to work obligations, so I went down with the two boys. Thanks to the many helping hands, it was a fun vacation for all!<br />
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Listening to seashells!!</div>
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This one decided to wake up at 5am each morning. So we usually headed outside.</div>
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Evan played mini-golf for the first time!! And at an indoor course! </div>
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AND we were with another child we met who also has ichthyosis!!</div>
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One morning it was cloudy and cool so as soon as Evan opened his eyes we went to the beach. </div>
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Still in his PJs too! So convenient staying at a house on the ocean!</div>
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The next big event this summer was a vacation to Cape Cod! The weather was much more forgiving than the south and a cold front had come through creating ideal outdoor conditions for Evan. Unfortunately, he was a little under the weather himself so Joe and I were a bit worried to travel. Of course Evan said he "felt fine" and "didn't feel sick" to make sure we would still go on vacation. Luckily it all worked out and it was a great visit with more family.<br />
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The second time this guy got to play mini-golf!</div>
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AND GOT A HOLE-IN-ONE!!!</div>
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Don't mind my sqeaky excitement!</div>
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It was a happy day!</div>
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Beach time was perfect and cool! To the point Evan asked for a blanket!</div>
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What's a Cape Cod vacation without stopping for some School House ice cream! </div>
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Another big event this summer was our family camp out. We started the summer off with some backyard camping but Joe and I braved the wilderness to do some real camping with the boys. We headed up to the Green Mountains in VT and camped at a beautiful park with some good friends. Luckily they lived close by so we knew we had a house (aka bath tub) to go to when we needed it! Evan just loved camping! His favorite part was helping his daddy make the fire! And again we got beautiful, cool, comfortable weather which included some chilly nights! It was a great family outing!<br />
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We had a gorgeous spot on top of a grassy hill with a little nook of trees for shade!</div>
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Evan picked flowers for us!</div>
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Vincenzo enjoyed the camping life!</div>
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Evan LOVED the campfire!</div>
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The benefit to an early rising baby!</div>
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Brothers!!!</div>
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Family!!!</div>
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I probably could go on and on and on about how eventful our summer was. It really was the busiest summer we ever had. Which included lots of picnics, pool parties, birthday parties, playground adventures, Action Wildlife visits, LOTS of blue berry picking, fishing at the lake and the usual home fun. We were always doing something or going somewhere but also had time to wind down and rest at home after busy trips and adventures. AND did I forget to mention Evan was in the summer school session and had physical therapy at the house? Yes we fit that in too! Next post will be all about Evan's Kindergarten experience!!!</div>
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And I couldn't not post an Action Wildlife pic! We spent half of our summer there!!!</div>
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<br />De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com0tag:blogger.com,1999:blog-6113641574975321616.post-31310628926920462712015-06-10T08:45:00.000-07:002015-06-10T17:42:15.990-07:00Happy Birthday EvanWe celebrated Evan's 5th birthday yesterday. It's hard to believe how fast time is flying on by. It feels like just yesterday he entered the world. And on that day we were filled with so much worry and fear; for his life and future on this Earth. Those feelings were uncontrollable and unfortunately not the typical feelings most parents experience with the birth of a child, their first child. Luckily we stayed strong and positive for him. Now, Evan is living his life happy and loved.<br />
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It has been quite an eventful few days of celebrating! Over the weekend we had Evan's birthday party, Monday we attended his preschool celebration/graduation and yesterday was his birthday! Not to mention he only has one day of school left before summer vacation!<br />
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Evan was just thrilled with all of the birthday attention this past week. He was very excited about his birthday party and just loved blowing out the candles on his cake. And as most children are, he was ecstatic about opening presents. He is such a sweet, loving, happy child. I am so proud of how far he has come!<br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-87009098316464458052015-05-15T06:12:00.001-07:002015-05-15T07:12:44.756-07:00Ichthyosis Awareness Month 2015: Evan's SkinSometimes it is hard to wrap my head around the fact that Evan cannot live without Aquaphor. Seems hard to believe that something as "simple" as putting on lotions/emollients is keeping him alive. Or that bathing multiple times a day not only hydrates him and keeps him infection free but makes it easier to move around, without pain. Having healthy skin was something I definitely took for granted before Evan came along. I never in a million years would think that not having healthy skin (excluding cancer) was something that could be life threatening.<br />
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Evan's skin cells are not functioning properly. <a href="http://www.firstskinfoundation.org/content.cfm?page_id=625&category_id=0">The mutation in his ABCA12 gene disrupts the transportation of lipids to the epidermis</a> which is necessary to keep the skin pliable and hold in the body's moisture. His body's automatic defense is to make new skin, for protection, which is growing much too quickly to shed on it's own. Untreated skin will encase the body restricting movement & breathing, cause fissures and open wounds susceptible to infection, cause dehydration at an accelerated rate and manipulate facial features & digits, just to name a few.<br />
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Over the years, medical treatments have vastly improved for those with ichthyosis, especially Harlequin. <a href="http://www.ichthyosis.org.uk/nusrit/">Prior to 1984 no one, affected with HI, survived birth</a>. It is just mind boggling that, in my lifetime, the evolution of medical care for HI has advanced so rapidly. I can only imagine the kinds of treatments (or cure :)) that will be available when Evan is 30!! I am very optimistic about the future medical advances that will be made for this disorder. And thanks to <a href="http://www.scalyskin.org/">foundations like FIRST</a>, stepping closer to a cure is possible!<br />
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<a href="http://ouryoungwarriorevan.blogspot.com/2012/10/evans-skin.html">Evan's skin care</a> these days is the same ol', same ol' regimen. I think of caring for ichthyosis not as "lather, rinse, repeat" but "bathe, exfoliate, moisturize, moisturize, moisturize, repeat". Evan gets two 40-60 minute baths a day to exfoliate and hydrate, he's lubricated with Aqauphor (head to toe) 5-6 times a day, receives eye drops while awake and eye ointment while sleeping and gets frequent <a href="https://youtu.be/HTwyyoHbSgE">ear care</a> and nail care when he's tolerant. And due to his hydration and caloric needs, he drinks a high calorie prescripted formula for nutrition, a minimun of 36oz of water each day, and is offered unlimited snacks and "meals" (this kid is so picky he will only eat 3 specific meals/foods). <br />
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I think Bruli would totally jump in if I let him!</div>
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The biggest change in Evan's skin care, these days, <a href="http://ouryoungwarriorevan.blogspot.com/2013/10/our-microsilk-tub.html">is his MicroSilk tub</a>. We have had it for almost 4 years and Evan has used it many many times. But now that he is finally reaching some gross motor milestones (sitting), it is easier to give him a bath in his big tub. One flaw of having a (almost) 5 year old that is the size of a skinny 18 month old, is that I have been getting away with using the infant tub one time too many. Since Evan is finally able to verbally communicate, he makes it very clear that he doesn't want to take a "blue bath" and I don't blame him! Evan LOVES his MicroSilk tub. <a href="http://www.jasoninternational.com/wellness/microsilkfundamentals.aspx">This tub emits millions of oxygen rich bubbles</a>, so small they are intended to deliver oxygen to your pores. Since Evan essentially does not have pores because his skin is so tight, I hope and wonder that this type of bath technology is making it possible to treat his skin in a new way. Not only does this tub significantly help with skin management but Evan is happy, relaxed and comfortable when using this tub.<br />
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I am very thankful that Evan was our first child. Ichthyosis and motherhood coexisted. It was all I knew what being a mother was like. There was never a time when Aqauphoring, after a bath or diaper change, seemed anything but normal. Now as a mother of two, Evan's baby brother being unaffected, makes me appreciate the little things. I probably would never think of how easy and quick a diaper change was if Evan was the younger brother. I am glad that I am able to appreciate these types of changes between caring for both boys instead of being discouraged about how easy it "use to be" if Vincenzo was born first. I like how ichthyosis has made me appreciate the finer things in life because with all considering we really do have a wonderful one.<br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-62734196369653342015-05-03T19:06:00.003-07:002015-05-04T06:33:02.895-07:00Ichthyosis Awareness Month 2015It's Ichthyosis Awawreness Month!! A month we recognize this life long disorder and come together to spread awareness. For the past few years I have hosted fundraisers for the FIRST Foundation. I contributed to "<a href="http://ouryoungwarriorevan.blogspot.com/2012_06_01_archive.html">It Makes Cents to Help FIRST</a>" and hosted two <a href="http://ouryoungwarriorevan.blogspot.com/p/fundraising-events-for-first.html">T-Shirt sales, Evan's FIRST Fundraiser</a>, to raise donations for the foundation. This year has been very busy as our newest member was recently welcomed. So my time has been consumed with my two little miracle boys. But as luck may have it, FIRST started the <a href="http://firstskinfoundation.donorpages.com/RAISE/DeFasciano/">RAISE Campaign</a> to "Raise Awareness, Funds and Hope for FIRST".<br />
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So can you help me <a href="http://firstskinfoundation.donorpages.com/RAISE/DeFasciano/">RAISE for FIRST</a>??? Donations of any kind are the stepping stones to a promising future for those affected! For everyone who makes a donation, I will send a custom magent with the Evan's <a href="http://ouryoungwarriorevan.blogspot.com/2013/03/send-me-your-t-shirt-pic.html">FIRST Fundraiser 2013 design</a> on it, as a thank you! Any awareness that can be brought to ichthyosis or FIRST would be greatly appreciated!!! Feel free to share this photo! It can also be shared from our <a href="https://www.facebook.com/MyWarriorsConqueringtheWorld">Facebookpage</a> as well!<br />
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<b>#HelpEvanFindaCure</b></div>
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<b>And how I always love to start off Ichthyosis Awareness Month (IAM) is with the facts:</b></div>
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<span class="Apple-style-span" style="font-family: inherit;"><b>- </b>There is no cure for Ichthyosis.</span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><b>- </b>Ichthyosis affects people of all ages, races and gender.</span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><b>- </b></span><span class="Apple-style-span" style="font-family: inherit;">Ichthyosis is not contagious. It is caused by a genetic mutation in 1 of 40 genes that make up the skin.</span><br />
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<b>-</b> <i>Ichthy</i> comes from the Greek root meaning fish.<br />
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<b>- </b>Some form of Ichthyosis affects more than 16,000 babies each year.</div>
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<b>- </b>There are more than 28 forms/types of Ichthyosis.</div>
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<b>- </b>Hearing and vision impairments are associated with those affected by Ichthyosis.</div>
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<b>- </b>Ichthyosis Vulgaris is the mildest and most common form, accounting for about 95% of the cases.<br />
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<b>- </b>Serious medical complications are associated with most forms of Ichthyosis including dehydration, infections, blistering, overheating, and rapid calorie loss.</div>
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<span class="Apple-style-span" style="font-family: inherit;"><b>- </b>The <a href="http://www.firstskinfoundation.org/" style="color: #d57629; text-decoration: none;">FIRST Foundation</a> is the only patient advocacy organization in the country funding research for a cure.</span></div>
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<b>Facts about Harlequin Ichthyosis:</b></div>
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<b>- </b>Harlequin Ichthyosis (HI) is very rare and the most severe form of Ichthyosis.</div>
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<b>- </b>HI affects maybe 1 in 1,000,000 people.</div>
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<b>- </b>Each parent has to be a carrier of the mutated gene but show no signs of Ichthyosis.</div>
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<b>- </b>An HI infant is born with plates of skin that crack and split apart leaving the body susceptible to life threatening infections.</div>
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<b>- </b>At birth, the eyes and mouth are forced 'inside out' due to the tight plates of skin.</div>
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<b>- </b>The ears of an HI infant may appear to be misshapen or missing, but are fused to the head by thick skin.</div>
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<b>- </b>In the past, this disorder was always fatal but due to improvements in care it is now possible for an HI infant to survive.</div>
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<b>- </b>The oldest person living with Harlequin Ichthyosis is 31 years old.</div>
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-Stephanie Turner (22) is the first woman, with harlequin ichthyosis, to have children.</div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com0tag:blogger.com,1999:blog-6113641574975321616.post-41822493380810569062015-04-29T07:52:00.002-07:002015-04-29T07:55:05.753-07:00Spring Break FunWe have been busy, busy, busy! I feel like I am repeating myself! It's hard to blog these days while caring for these two active boys! We had lots to do during Evan's spring break and I tried to make it an enjoyable week, filled with lots of activities and events!<br />
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First on the list was a movie. My mother and I took Evan to the local theater this winter, which shows the movies that are just out of the big theaters. Evan seemed to enjoy it, so I was looking foward to bringing him to a "real" movie in the big theater. On one of his first days of vacation, Joe and I brought him to see the movie Home. He was thrilled!<br />
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That smile says it all!!!</div>
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We lucked out with some really nice weather and thankfully the snow finally melted. We got to play outside a lot and took a few trips to the park so Evan could be a kid! And of course Evan wanted his brother to come along!</div>
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He wanted to play dinosaurs outside. Sure why not?</div>
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Park fun!!</div>
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He loves slides now!</div>
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Brother time!</div>
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Evan went to an aquarium when he was 2 and obviously doesn't remember. So on the only rainy day over break, my parents and I brought the kids to the Aqaurium. Evan was a bit weary at first and did not want to get out of the stroller. He warmed up and walked around with me to explore some of the fish, frogs, turtles and sharks!!</div>
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<span class="Apple-style-span" style="font-size: x-large;"><b>Ichthyosis Awareness Month Starts on Friday! Help us raise awareness by supporting the <a href="http://www.scalyskin.org/">FIRST Foundation</a>!! Thank you!!!!</b></span></div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-45308595707930862052015-03-13T07:03:00.001-07:002015-03-13T07:03:09.765-07:00Snow DaysWe have had quite the winter here! Not only were temps way below 0 many days but the snow was crazy too! I'm so sick of snow! Which is usually the consensus for everyone come the end of winter. Evan had quite the handful of snow days this year. Many weeks only going to school 1 or 2 days. So I have had my hands full the past few months! Luckily, this year Evan really enjoyed the snow and had some fun playing in our yard. He even got to go sledding for the first time! Enjoy the photos of this happy little kid in the snow! It was a joy for me to watch a kid being a kid!<br />
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<b>January Snow Days</b></div>
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He loved walking in and kicking around the snow!</div>
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I remember the joy of playing in the snow when I was little too!</div>
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Evan was getting a kick out of Bruli's excitement too!</div>
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It's hard to tell who likes the snow more!</div>
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<b>February Snow Days</b></div>
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Good thing for snow blowers! AKA sledding track makers!</div>
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Evan's <b>very first time</b> sledding!!</div>
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<b>March Snow Days</b></div>
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The crew</div>
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Vincenzo got out one day too!</div>
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That face is priceless! Pure happiness and joy!</div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com0tag:blogger.com,1999:blog-6113641574975321616.post-54996920218914115622015-02-27T07:44:00.002-08:002015-02-27T08:04:29.455-08:00Rare Disease Day 2015<div style="text-align: center;">
<b>Celebrating World Rare Disease Day 2015</b></div>
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The reason why I blog is to raise awareness for ichthyosis. I want others to know about it, learn about it, help me on my mission to educate others and to support a foundation (<a href="http://www.scalyskin.org/">FIRST</a>) who only betters the lives and families of those affected. Of course on Rare Disease Day I am going to write about skin. But not ichthyosis skin. <a href="http://irefuseeb.org/about-epidermolysis-bullosa/">Epidermolysis Bullosa</a>; EB skin.<br />
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Before Evan was born, skin conditions like his did not even "exist" in my world. I never heard of ichthyosis. Never saw anyone with it. Never saw anything online or on TV about it. I didn't know it exsisted. I had no idea what an impact healthy skin has on a human being and how easily it is to forget that your skin helps keep you alive just as any of your other organs do. Not only did I not know that ichthyosis existed, I never knew about another skin disorder which was just as, if not more, devastating that ichthyosis, <a href="http://www.debra.org/whatiseb">Epidermolysis Bullosa</a>.<br />
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After hearing about the possible diagnosis for Evan before he was born, my husband and I started doing research online. Unfortunately just about 5 years ago the information available is nothing like what is available today. It is quite amazing how the internet and social media has evolved in Evan's lifetime providing the most accurate information at your fingertips. Fortunately we were in good hands and were given the proper and accurate information about Harlequin Ichthyosis from the nation's leading experts. But basically the same time I learned about ichthyosis, I also learned about EB.<br />
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EB is devestating. EB is known as the "butterfly skin". I think of it as the polar opposite to ichthyosis. Where I have to scrub and scrub Evan's skin to get all of the thick build up off, EB skin is so incredibly fragile that the slightest friction can cause skin to blister, leaving open wounds. Severe forms not only affect the skin but also the soft tissues and organs. They are just as fragile to the slightest friction; even swallowing, blinking or digesting food causes pain and deterioration. Since there are only "treatments", those with EB endure a great deal of pain during bandage changes and while bathing. Open wounds are not only excruciating but are susceptible to infection. When I first learned about EB, Evan was still in the NICU and things were still pretty intense and critical. A week after he was born the National Geographic Channel aired a show called Extraordinary Humans: Skin. We knew to watch the show since our dermatologist told us a young woman with Harlequin would be featured in it. We watched <a href="http://channel.nationalgeographic.com/channel/galleries/episode-extraordinary-humans-skin/at/4215-rare-anatomy-skin-01_04700300-9407/">Hunter's interview</a> first and I remember feeling so relieved but still very confused trying figure out what HI was all about. After Hunter's story was <a href="http://channel.nationalgeographic.com/channel/galleries/episode-extraordinary-humans-skin/at/4215-rare-anatomy-skin-10_04700300-9398/">Garret's story, who is affected with EB</a>. After watching his clip I was heartbroken. Evan was only a week old and I remember thinking to myself that I was glad Evan had ichthyosis and not EB. And I feel guilty and spoiled for thinking that.<br />
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Every time I hear someone's story who has EB, I am flooded with emotion. I follow <a href="https://www.facebook.com/savejax">Jax's story online</a>. It breaks my heart when I see his mother's posts about heading to the ER, yet again, to check his blood platelets. Or when <a href="https://www.facebook.com/pages/Support-Baby-Easton-Friedel/238682382923436">little Easton</a> was born; how my heart ached for his parents as he fought for months and months before he finally got to go home to his family. He as well as Jax are both currently in the hospital having procedures and surgeries done. The first child's story that I followed online was a <a href="http://randycourtneytripproth.blogspot.com/p/tripps-story.html">little boy named Tripp</a>. His mother writes a blog and I began reading it around Christmas time 2011. Not much longer after I started reading about Tripp he got his angel wings. My heart was broken for his mother, Courtney, and for their family. Too many sufferers have lost their life too soon.<br />
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Recently, EB has been talked about in Hollywood as <a href="https://www.charities.org/news/celebrity-apprentice-ian-ziering-raises-money-and-awareness-epidermolysis-bullosa-eb">Ian Ziering competed on the Celebrity Apprentice </a>and chose an EB foundation as his charity. And the other day on Ellen, <a href="http://liherald.com/stories/Robbie-goes-on-Ellen,64287?page=1&content_source#.VO3z0nHW6yM.facebook">Robby and his family were raising awareness for EB on her show.</a> I am so delighted for the EB community to gain more awareness.<br />
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I could only hope a cure can be found. I would gladly give up a cure for ichthyosis if one could be found for EB. Luckily Evan is OK. He isn't in pain every single day. Yes there will be bumps in the road and unfortunately possible hospital stays in the future. But overall, as of now, his quality of life is pretty good. I can hug my child. I can hold him tight and not worry about causing him pain or causing his skin to dangerously fall off. That is something that EB parents are unable to do and <i><b>that</b></i> is heartbreaking. You can help the lives of those with a rare disease. Especially this rare disease.<br />
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Help find a cure!!!</div>
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Donations can be made to any of the following charities. Thank you for reading, sharing and helping!</div>
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<a href="http://www.ebkids.org/">Epidermolysis Bullosa Medical Research Foundation- EbKids.org</a><br />
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<a href="http://www.debra.org/">Debra- Dystrophic Epidermolysis Bullosa research Association of America</a><br />
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<a href="http://irefuseeb.org/">iRefuseEB- I Refuse Epidermolysis Bullosa </a><br />
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<b>World Rare Disease Day Official Video 2015
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<b><span class="Apple-style-span" style="font-size: large;">Past Rare Disease Day Posts!!!</span></b></div>
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<a href="http://ouryoungwarriorevan.blogspot.com/2014/02/rare-disease-day-2014.html"><span class="Apple-style-span" style="color: black; font-size: large;">Rare Disease Day 2014</span></a></div>
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<a href="http://ouryoungwarriorevan.blogspot.com/2013/02/rare-disease-day-2013-rare-disorders.html"><span class="Apple-style-span" style="color: black; font-size: large;">Rare Disease Day 2013</span></a></div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-30664206838149760882015-01-22T04:07:00.001-08:002015-01-22T04:09:00.105-08:00Throwback Thursday: Evan Hand-Me-DownsEnjoy some cute pics of Evan when he was a baby. And Vincenzo wearing the same outfit years later!!! :-) Time is flying on by!!!<br />
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Evan 16 months - Vin 4 months</div>
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I LOVE this sleeper! It's a<i> Life is Good </i>piece which says "Bee Happy". </div>
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I had to save this one even though it got its fair share of Aquaphor.</div>
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(FYI- Evan just started eating yogurt and had a cute yogurt stache)</div>
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Evan 10 months - Vin 2 months</div>
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This hand-me-down was actually given to Evan from his Daddy! </div>
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It is an outfit that the boys' great grandparents got when they were in Spain many years ago. </div>
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Unfortunately we cannot find a picture of their Daddy wearing it. Maybe it'll pop up someday.</div>
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Evan 7 months - Vin 3 months</div>
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This onesie was definitely a keeper! Without a doubt their Daddy is their hero. </div>
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Evan wore this countless times and Vincenzo probably wore it twice.</div>
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Oh and Evan can still sit in the Bumbo and get out of it with no problems. </div>
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The Bumbo goes with Vin as his chunky thighs get stuck in it!</div>
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And speaking of hand-me-downs, here is a video clip of Vincenzo getting kisses from Bruli in Evan's old jumper just as Evan did years ago!! This dog is a love-bug!<br />
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Kisses for Vincenzo</div>
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Kisses for Evan </div>
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March 2012</div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-83150584106600932352015-01-19T06:13:00.001-08:002016-01-14T07:37:18.546-08:00Why I Hate and Don't Hate IchthyosisThe life I live would not be a life at all, if ichthyosis was not a part of it. Evan is my life. (And now, his little brother too). And though ichthyosis comes with some characteristics that I without a doubt, hate, there are many reasons why I do not hate it as well.<br />
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I hate ichthyosis because it almost took my son's life.<br />
Watching my child <a href="http://ouryoungwarriorevan.blogspot.com/2012/05/ichthyosis-awareness-month-week-two-my.html">cling to life in an isolette when he should have been in my belly</a>, was a very scary feeling. Knowing this condition was at it's most crucial and life threatening state upon birth, was terrifying. I will never forgive "ichthyosis" for giving me those feelings.<br />
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I hate ichthyosis because it jeopardizes my son's health everyday.<br />
We have obviously gotten a hold on things over the years with skin management, feedings, hydration, body temperature, surgeries and infections. I have to admit we have been pretty darn lucky but the fact that <i><b>that</b></i> can change very easily, is yet again terrifying.<br />
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I hate ichthyosis because it will force Evan to be put in awkward situations because of rude and ignorant people.<br />
Luckily we haven't run into too many horrible souls in Evan's lifetime. The worst that stick out in my mind was the time I thought <a href="http://ouryoungwarriorevan.blogspot.com/2012/11/our-bizarre-stranger-encounter.html">someone took a picture of him</a> or the time <a href="http://ouryoungwarriorevan.blogspot.com/2013/09/picking-up-and-moving-on.html">at Target when a mom (who was thinking she was being a great mom) said something to the mom who let her child get severely "sunburned</a>". It is interesting to see how I have changed over the years when it comes to interactions with strangers. Fortunately, when we are faced with any awkward situation, I stay positive for Evan, tell him how beautiful he is and then give him a big kiss.<br />
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I hate ichthyosis because on winter days I'm fighting with humidifiers to keep the house moist and in the summer I fight with the air conditioners so that Evan does not overheat.<br />
I know this comes with the "ichthyosis" territory but I hate it. I hate the gut wrenching worrying when I hear about the 90 degree heat wave that is coming because it is a danger to Evan's health. I hate having to worry about loosing power during a thunderstorm because I won't have a way to keep Evan cool. I hate having to be stressed out anytime we are in the car, in the summer, because even though I have my AC on, it is never cold enough (especially since his car seat is like a personal butt warmer). I hate the winter because without good humidity, he gets fissures very easily. And for skin that heals as quick as it does, it sure takes a long time for these fissures to heal when every time you move they keep opening back up. I hate winter because tubs of Aquaphor, multiple baths and the humidifiers running 24/7, still isn't enough to keep his skin from tearing.<br />
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<b>BUT</b> if you are going to make a list there are two sides to it..<br />
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I don't hate ichthyosis because it has made me a much stronger person or at least, let my true colors come to light.<br />
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I don't hate ichthyosis because without it, we would not have met some absolutely amazing people and families.<br />
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I don't hate ichthyosis because it has given us the opportunity to educate others.<br />
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I don't hate ichthyosis because it has bonded me to Evan in a way I had never imagined I would be with my child.<br />
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I don't hate ichthyosis because it keeps my leather couch nice and soft!<br />
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I don't hate ichthyosis because I can get "free" chapstick anytime I want, just by giving my child a smooch!<br />
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I don't hate ichthyosis because it made me realize that clothes are JUST clothes.<br />
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I don't hate ichthyosis because it makes for easy identification to what Evan has or has not touched. (that will come in handy as he gets older and tries to be sneaky!)<br />
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I don't hate ichthyosis because it has made me care less about the insignificant things in life and care more about the important ones.<br />
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<b>I LOVE ichthyosis because it makes Evan, Evan.</b><br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com2tag:blogger.com,1999:blog-6113641574975321616.post-90186692180224821252015-01-03T11:12:00.001-08:002015-01-03T11:17:56.661-08:00Neurology VisitEvan visited his Neurologist yesterday to follow up with his developmental progress. He, as always, was a trooper especially since he is just getting over a stomach bug plus a yucky cold. His doctor was very happy to see how much he improved over the past year and a half. It is obvious he is still very delayed for a 4 year old so our goal is to "figure out" what's going on and make a plan to help him improve developmentally. So we have a few things we need to get done over the next few months.<br />
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Evan first saw his Neurologist in the beginning of 2012 because we were concerned with his delays. At that time Evan was the youngest child with Harlequin we knew of. So a lot of our assumptions were that his diagnosis and preterm birth were the result of these delays. He had an MRI done which showed under developed spaces of Myelin. And the plan made at that time was to increase all his services in hopes that it would help him reach the milestones which come so easy to many "normal" developing children. Though his therapies have immensely helped him improve across the board, he still struggles to reach milestones and the ones he has achieved, took years.<br />
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Over the past few years we have connected with families who have children with Harlequin, many who were born after Evan. It was interesting for me to see these children grow up and surpass Evan in the motor world. It confused me as we seemed to "blame" HI for his delays yet these other HI kids were doing so well developmentally. Granted he is the most preemie out of all the HI kids I know of, I have started to think that there is something else going on which is causing him to take so long to develop gross motor abilities. I have been asked if his lack of diet was thought to be causing his delays. I find it hard to believe since he has always gained weight and actually ate pretty well his first year of life. Yet he met very few milestones in the first 18 months of life. And after seeing multiple dietians, a naturopath and Yale's GI doctors, his weight gain is not average but its consistent. I mentioned this to the Neurologist when we met with her but she seems to think it's something else.<br />
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After evaluating Evan and being very pleased with how much he has improved since the last time she saw him, she still had some concerns. She wants him to see an orthopedist before we continue with a 2nd MRI. He has seen one before but at that time he wasn't nearly as "motor" as he is now. She also noticed how hyper-reflexive he was which is a sign of a nervous system "issue". She made a comment that even though he has been diagnosed, there could be underlying issues with the mutations he has in his genes. Evan has mutations in his <a href="http://www.firstskinfoundation.org/content.cfm?page_id=625&category_id=0">ABCA12 gene which causes HI.</a> When he was born his dermatologists mentioned that one of the mutations has never been reported. So this leaves lots of room for the unknown. I was confused as I thought these mutations just affect his skin. But there is so much they are still learning about the condition, with the Neurologist mentioning how a missing protein may be affecting more than just his skin.<br />
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I'm not sure if we will ever know if it was the premature situation, intense NICU stay, the unknown of what his mutations completely affect or all of them combined, that have ultimately caused these challenges for Evan. Nevertheless I am certain that we will triumph and get him to where he needs to be with time and a little (well a lot of) work. It has been evident that it takes him a long time to achieve developmental milestones, remembering at his 1st birthday he was like a newborn in many ways, but we will get there. Knowing that he has made more improvements in the past year than he has in his whole life reassures me for the future. He is our 'young warrior' and has been impressing me everyday for the past 4 and a half years and I'm sure will continue to do so for the next 50+.</div>
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Now please enjoy the cutest video ever!</div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-78634061070046115932014-12-21T04:24:00.002-08:002014-12-21T04:27:47.358-08:00Our Facebook PageI created a <a href="https://www.facebook.com/MyWarriorsConqueringtheWorld?ref=bookmarks">Facebook page</a> so that everyone can keep up with my little guys at a finger's reach. I told myself I wouldn't, as I have the blog to update everyone but it is honestly easier & faster to update Facebook. Though I still plan on keeping up with the blog, I could also update the FB page when I don't have a chance to sit down at the computer to write.<br />
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Now that both of my boys have specialists to tend to, I wanted to be sure all of my family, friends and friends of friends are able to find out what is the latest news with my boys. Soooo here is the latest:<br />
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Evan, as you read already, is <a href="http://ouryoungwarriorevan.blogspot.com/2014/11/on-move.html">on the move</a>. He is crawling all over the house, rolling around his cars and trucks. He loves to sit under the piano and tap on a drum or strum his little Mickey Mouse guitar while I play on the piano. He LOVES to play with the baby and show him his toys. He is such a great big brother and always tries to comfort the baby when he cries. He loves to help hold Vincenzo's bottle or "change his diaper". Evan says, "Goodbye baby. I go school now," every morning before he leaves and "baby I home now," when he gets back. It is quite adorable.<br />
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Vincenzo is growing up fast. Something that is foreign to me since Evan takes so long to grow. He is wearing 6 months clothes already and is a whopping 15 1/2 lbs at almost 4 months old. He's wearing clothes that Evan was wearing when he was a year old!!! We recently were at the doctors following up with Cardiology. Vin had his 3rd EKG and Echocardiogram and did a very good job staying still for the doctors. Not sure how that will work when he's a wiggly 6 month old! All test came back good and the tumor in his heart has not changed size which is good in Cardiology's eyes.<br />
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We are getting very excited for Christmas! I hope everyone has a very happy holiday!!!<br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com0tag:blogger.com,1999:blog-6113641574975321616.post-7806370539660433352014-12-08T06:42:00.002-08:002014-12-08T06:42:42.069-08:00Tis' the SeasonThe Holidays are rapidly approaching and Evan is just delighted! He is very much into Christmas this year and Santa and PRESENTS!!! It is such a joy to see him get all excited over decorating, making cookies and getting & wrapping gifts. I have been anxiously awaiting for Evan to understand this season.<br />
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When we went to cut down our tree, Evan kept repeating over and over "Im so excited! Im so excited!" We brought a sled and everything as this was this first year there was snow on the ground while picking out a tree!!!<br />
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Evan had a holiday sale at school so he had the opportunity to buy presents for the family. I heard he took his present buying very seriously and never once asked or wanted anything for himself! A true gift giver!! I can't wait to see what he picked out for me. I have a feeling it will be by far my favorite gift.<br />
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But as much as it is the "season of giving" it is definitely a time to remember and be grateful for our blessings and the wonderful life we get to live. This is Vincenzo's 1st Christmas and Evan's 1st as an eager Santa fan! This will be a memorable holiday for sure!<br />
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Cookie Time!!!</div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com4tag:blogger.com,1999:blog-6113641574975321616.post-15439906630818842272014-11-28T05:00:00.000-08:002014-11-28T05:06:37.803-08:00Beyond ThankfulThis year has been eventful. My pregnancy was quite the adventure from start to finish including a hospital stay at 36 weeks due to high calcium resulting in a parathyroid removal surgery at 37 weeks. I gained a whopping 60 pounds and gave birth via cesarean to a 9lbs 9oz chunker. As you may have read last month, Vincenzo has his own set of <a href="http://ouryoungwarriorevan.blogspot.com/2014/10/good-news.html">"challenges".</a> Nothing like Evan but enough to cause worry and questions. But I still cannot help but be incredibly grateful for my <i>perfect</i> children and my <i>perfect</i> life.<br />
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<i>Perfect</i>. A word that many people strive to be. But what is <i>perfect</i>? I absolutely do not strive to be perfect in society's eyes nor want to be. Perfect has a different meaning depending on who you ask. And to me, <i>perfect</i> is what I want it to be. Perfect <b>is</b> being happy with your life. Perfect <b>is</b> being happy with yourself. Perfect <b>is </b>cherishing every moment with the people you love. I am happily married and have happy children. If you ask me, that's pretty perfect. The saying goes, "There is no such thing as perfect." This is true in respect to society's perfect because that perfect is not real. Perfect is what is perfect to you. I have my <i>perfect </i>so I can't say that it doesn't exist. No, it may not be what many consider perfect but it is to me.<br />
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This Thanksgiving is very special to me. My family is complete now that Evan is a big brother. We have 2 new babies in the family other than Vincenzo, who we will get to visit with on this holiday. I am beyond thankful for my family. And that goes for every single person in it. My parents and in-laws have been a huge help since the baby has been born (and obviously prior to). They have given me breaks and I have gotten many full night's sleep. They bend over backwards to help us when we need them and I am incredibly grateful for that.<br />
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My husband is truly an amazing person. I am so thankful for everything he does for our family. He works so hard to provide for us and makes it possible for me to stay home with our boys. Something that I do not take for granted and am so privileged to do. I know there are mornings when he's leaving for work before 6am wishing he was the one who got to stay home. He is such an amazing father and if you thought Evan had a nice smile, you should see it when Joe walks in the room. Evan absolutely adores his daddy and Vincenzo too!<br />
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I am beyond thankful for the life I have been given and the life I get to lead. I love my normal. I love my perfect family, pets included! I hope you all have a wonderful Thanksgiving and holiday season. Remember to not take the precious things in life for granted. Spend as much time as you can with your loved ones and cherish those moments.<br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-36683798227935522022014-11-13T03:55:00.002-08:002014-11-13T04:05:28.232-08:00On the MoveEvan has been army crawling for months now. While I was pregnant most of his crawling was done in his room on his play mat. I was nervous to let him crawl around on the hardwood as I didn't want him to fall over and bump his head. It was obvious he was getting the hang of it and if he actually did fall over he knew to keep his head up to prevent it from whacking the floor. So I let my guard down and let him have free roam of the living room/kitchen area.<br />
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Though I never thought it would take 4 years for him to do this, I always wondered how crawling, aquaphor and dog hair would pan out. And yes, just as I presumed, a sticky mess! Luckily Evan's new found motor ability has kept me cleaning the floors constantly. I vacuum, swiffer, mop, then swiffer again to make sure he doesn't collect too much dog hair/dirt on his skin. No matter how much I clean the floors he still ends up finding the spots I missed, so he tends to go right into the bath after a good hour of crawling around. Then ironically enough the floors are sticky with aquaphor when he is done leaving me to cleanup yet again. But hey- totally worth it!<br />
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He is able to get onto 4 point (hands and knees) with no problem but has NO balance and tends to face plant when in this position. He will only go on four point when I ask him to as he remembers the result of his balance issue. He will use 4 point to get into a sitting position from laying down. Yet another huge motor milestone. While this transition is also a bit unstable, he has been achieving it more and more with less falls and little spotting.<br />
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His favorite thing to do these days while crawling, is investigating the piano room. Yet another floor to clean for him but more area to explore and move around on. It's a new world having him move on his own, something his brother will be doing very soon too! Here is some footage of Evan on the move!<br />
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(If you were curious to what Evan says at the end of the video, he said "I want Daniel Tiger". His new favorite show)<br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-60877788935985836372014-11-04T07:08:00.000-08:002014-11-04T07:14:29.922-08:00Life with Two KiddosLife has been very busy as a mom of two. Evan kept me busy as is, add a newborn and WOW! I am still adjusting, trying to make sure Evan gets just as much attention as before without him feeling jealous. Luckily he has been a very good brother and the jealousy has not surfaced yet. The worst I get is Evan saying "Mama, put baby down," in order to get something he asked for. I chuckle and think it is pretty darn cute that he thinks I cannot multitask!<br />
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With a new baby comes times where I find myself "keeping Evan busy" so I can feed the baby or do baby "duties". This usually means Evan is watching a show on the iPad. He is currently obsessed with Daniel Tiger's Neighborhood. He sings along with all of the songs, giggles and repeats most of what they talk about on the show. Fortunately he is learning something. Life lessons/morals like taking turns, listening to directions for safety, being calm when need be, thinking happy thoughts when scared and the list goes on. I feel guilty sticking him in front of the iPad but recently he begs me to watch it. Over and over and over. Luckily it is not the only thing he does in a day.<br />
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Evan is starting to become more independent and is now army crawling all over the house. It could not come at more of a perfect time. He loves to scoot all over the place with some cars and balls. We make forts with big boxes and sheets over the couch and coffee table. I've made him a road, with masking tape, that he got a kick out of for a few days. He is definitely enjoying the independence and I do not feel as guilty as he is doing something motor, FINALLY!<br />
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School is going very well for Evan. He still LOVES it and is the happiest kid as he boards the bus. He loves being a big brother and is quite the helper too! Enjoy the video and current pics of our boys!<br />
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Halloween: "Smarty Pants and Tigger"</div>
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He refused all other costumes!!</div>
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Fall hikin' with the boys</div>
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Playing with Bruli! He always tells Bruli to come in his fort!</div>
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Such a good big brother!!<br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com2tag:blogger.com,1999:blog-6113641574975321616.post-81021114427811027882014-10-13T05:21:00.001-07:002014-10-13T05:21:30.857-07:00Good NewsWe did not win the "lottery"!!!!!! According to genetics, they did not find the gene which causes tuberous sclerosis in Vincenzo. Yay!!! Even though we are not out of the woods yet, this is a huge relief. And granted genetics are never 100%, this lightens the worry load for now! So in the meantime I will enjoy my babies with a little less worry! Evan keeps us on our toes as is!!!<br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com3tag:blogger.com,1999:blog-6113641574975321616.post-47268573931277895122014-10-03T09:25:00.001-07:002014-10-03T09:29:47.509-07:00I Don't Want to Win the Lottery..We have delt with our fair share of medical challenges with Evan. From a life long diagnosis and a <a href="http://ouryoungwarriorevan.blogspot.com/2012/05/ichthyosis-awareness-month-week-two-my.html">two month NICU</a> stay due to a premature birth including strict skin care regimens, blood transfusions and an emergency hernia surgery; it's enough to last me a lifetime of worry. It hasn't been easy but we have remained strong for Evan to get through the bumps along the way.<br />
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Evan's condition is rare. So rare, it's a -one in a million- type of occurrence. For Joe and I to both have this genetic mutation and then to pass it on through a recessive gene, is rare in itself. It would have been easier for us to win the Powerball but instead we won the "genetic mutation lottery". A lottery I was hoping to avoid with our second child. And as we avoided the harlequin "lottery". A new set of challenges have popped up with our newest bundle of joy.<br />
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Five days prior to his birth, my high risk doctors found a "mass" in the baby's heart. After seeing these doctors for 9 months (because of my preterm history) and receiving multiple ultrasounds and non-stress tests, I was very surprised this was happening. Well sort of. After everything that happened with Evan, I almost felt it was too good to be true to have a "normal" pregnancy. Yet what is normal when you have to have a surgery to remove your para-thryoid at 37 weeks pregnant? (A whole other story!) But when the doctors started focusing on the baby's heart, mine pretty much stopped. Why? WHY?!?! How could we be going through this again? How could our baby be going through this? How could something be wrong???? I thought we were done with specialists and medical concerns for at least one of our children.<br />
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The day of Vincenzo's birth was still a very happy experience. Though there were still concerns and cardiology would be following him after birth, it was not traumatic like Evan's birth. It was a nice change to actually hear him cry and be able to see and touch him immediately following birth. Being able to touch him moments after was so new to me. His skin was so soft and he was so happy to be snuggled up next to my cheek. Though he did head right to the NICU after he got his kisses from me and my husband. The NICU, an all too familiar place. A place where he was monitored the first day of his life receiving an EKG and heart ultrasound. A place where he was being cared for by the very same nurses and doctors his big brother had. A place I never thought we would step foot in again.<br />
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After lots of tests and doctors visiting the baby, they decided to test him for tuberous sclerosis. A genetic condition that occurs spontaneously. This condition causes benign tumors to grow in different organs, primarily the heart, brain, kidneys and eyes. These tumors can causes issues depending upon where they are found. Testing for this is just the first step in trying to figure out what is going on. As of right now the "tumor" in Vincenzo's heart is not causing any issues. While in the hospital he received a brain MRI and kidney ultrasound to check for any abnormalities, all to which came back normal. We are hoping that he does not have this disorder and the mass they found is a random one time thing that will dissipate on its own.<br />
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For both of my children to have two different random genetic mutations makes me feel like we won some sort of genetic mutation lottery. I am hoping it is not the case with Vincenzo. We have enough on our plate as is and it is hard enough to see one of our children have to deal with lifelong medical challenges. I cannot imagine both of them having to. Let's hope we don't win this lottery.<br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com2tag:blogger.com,1999:blog-6113641574975321616.post-88125598833345286412014-09-30T04:06:00.001-07:002014-09-30T04:14:03.415-07:00Dear EvanA week after Evan was born National Geographic aired the show Extraordinary Humans: Skin. The show followed two young adults living with rare skin disorders, one being Harlequin Ichthyosis. It was amazing to me that a week after Evan was born, after hearing the words "Harlequin Ichthyosis" for the first time in my life, there was an episode detailing the disorder. It documented a young woman affected, Hunter. This was the first time I had heard about Hunter and I was so intrigued to see how she lived her life in a positive light. The show answered many of our questions and we were able to see that it was possible to live a normal life with this disorder.<br />
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Hunter is a huge advocate for Ichthyosis Awareness. She recently was on the <a href="https://www.youtube.com/watch?v=9CFl_qk96Jg">Katie Couric Show explaining this disorder</a> and what it is like living with it. She has always been a huge motivation for us and for Evan. It wasn't until<a href="http://ouryoungwarriorevan.blogspot.com/2014/07/summertime.html"> this past summer</a> that we were able to meet Hunter. I was excited as this was the first time meeting her in person. Though I had never met her before, I felt like I had known her forever. Evan took to Hunter right away too. He seems to be aware that Hunter is just like him. We had a lovely time visiting with her and I am so glad we had the opportunity to meet in person.<br />
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I asked Hunter if she had any advice for Evan as he got older knowing she had experienced quite a lot in her life. This is what Hunter had written to Evan:<br />
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<div class="MsoNormal">
<i>Over the course of my life
thus far, I have come to a number of useful conclusions. Here is advice I have
for Evan as he grows! <o:p></o:p></i></div>
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<div class="MsoNormal">
<i>Dear Evan, <o:p></o:p></i></div>
<div class="MsoNormal" style="text-indent: .5in;">
<i>First
things first, you are a wonderful person who possesses unbelievable love for
people! Never lose it! Sometimes this world can make you forget how valuable
you are. You are valuable and loved! There have been so many instances where I
forgot the support that I have around me. You will always have people in your
corner!<o:p></o:p></i></div>
<div class="MsoNormal">
<i><span style="mso-tab-count: 1;"> </span>Be
prepared to advocate! A big part of being as special as you are is being able
and willing to tell other people about yourself. Remember that most people have
never seen a person with Harlequin Ichthyosis before. You don’t have to tell
them anything, it is your choice, but I have learned from experience that being
more open with people will draw people to you. If you are unafraid to speak up
and be you, other people will draw on that strength. I know it is not always
easy or pleasant. It takes a great deal of patience and understanding but
believe me when I say it is worth it. <o:p></o:p></i></div>
<div class="MsoNormal">
<i><span style="mso-tab-count: 1;"> </span>Sometimes
though, people won’t be so receptive of who you are. People can be cruel. There
were many times that I have been singled out for being different and made to
feel ashamed for it. Be aware that some people will do this. However, not
everyone is like that. The majority of people you will run into will be willing
to at least attempt to understand you. Whatever you do, never assume the worst
in a person. There is always more to the story than what you are experiencing. <o:p></o:p></i></div>
<div class="MsoNormal">
<i><span style="mso-tab-count: 1;"> </span>Don’t
be afraid to stand up for yourself! When you do encounter someone who treats
you unkindly, don’t be afraid to stand your ground! This goes back to what I
said earlier, do not let them tell you that you do not have value because of
your skin. Your skin makes you uniquely you, people who ostracize you for it
will never understand that. At the same time though, do not let your skin
become you. <o:p></o:p></i></div>
<div class="MsoNormal">
<i><span style="mso-tab-count: 1;"> </span>I
know that sounds strange but trust me, it can happen. When I say not to let
your skin become you, I mean do not let it dictate who you are and what you
choose to do. You will have to work around it sometimes, but working around it
is not the same as letting it make your choices for you. <o:p></o:p></i></div>
<div class="MsoNormal">
<i><span style="mso-tab-count: 1;"> </span>Life
is not always easy but it is always rewarding! For as much crap that happens,
there will always be a light at the end of the tunnel! Do not give up!
Perseverance is a trait that people admire and attempt to emulate. Not giving
in will not always be easy but you will earn the respect of those around you.
You deserve that respect! It is a reflection of your strength! <o:p></o:p></i></div>
<div class="MsoNormal">
<i><span style="mso-tab-count: 1;"> </span>You
are awesome and I will always be here for you! I cannot wait to see the kind of
person you grow into! <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i><span style="mso-tab-count: 2;"> </span>Your
Friend, <o:p></o:p></i></div>
<div class="MsoNormal">
<i> Hunter
Steinitz</i><br />
<i><br /></i>
<i><br /></i>
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<div style="text-align: center;">
Here is the video of Hunter on The Katie Couric Show</div>
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<b></b><a href="http://s46.photobucket.com/albums/f124/dede583/?action=view&current=jpg-1-1-1-1-1-2.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i46.photobucket.com/albums/f124/dede583/jpg-1-1-1-1-1-2.jpg" /></a>De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-27218638534869584132014-09-19T09:17:00.003-07:002014-09-19T09:18:29.613-07:00Family of Four<div style="text-align: center;">
<b>Evan is a BIG BROTHER!!!</b></div>
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Vincenzo was born on August 27th and we have been loving on him for the past few weeks! Evan is delighted to be a big brother and is adapting well. He loves to "hold" the baby and loves to give him kisses. He comforts the baby when he cries and says "Don't cry baby, its ok." We are happy and so glad our family is complete.<br />
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Obviously life with a newborn and 4 year old is busy, busy, busy!! Ill be sure to do my best to keep up with the blog when we have our routine set!! I'll be adding pictures to Evan's <a href="http://iconosquare.com/evanwarrior">Instagram account</a> more often so check them out!!<br />
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com3tag:blogger.com,1999:blog-6113641574975321616.post-16643122075192260642014-07-24T08:37:00.001-07:002014-07-28T05:54:46.723-07:00SummertimeWe have been pretty busy so far this summer. Though we have a love/hate relationship with the weather and high temps, we try not to let it hold us back from doing activities outdoors. Obviously on the brutally hot and humid days, I try to find new activities to do indoors. We have been managing well so far and the weather hasn't been too much of an issue... YET.<br />
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<b>FIRST National Family Conference</b><br />
Evan started his summer break with a trip to Indianapolis to the <a href="http://www.firstskinfoundation.org/news-details.cfm/Ichthyosis-News/Highlights-from-the-2014-National-Family-Conference-in-Indianapolis/id/267">FIRST National Family Conference</a>. It is held every 2 years and this was our first time attending. My sister in-law joined us since my husband was unable to attend. We had a marvelous time and met some wonderful families. Some families I "knew" from the internet but finally had the chance to meet for the first time, some brand new faces and some friends we have known for a few years which we connected with once again.<br />
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Spending time with our buddies</div>
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Evan spent the days in a kids camp with other affected and non affected children his age. He loved it! Every time I dropped him off he was instantly busy in some sort of activity they had set for the children. And I heard through the grapevine that he was basically one of the only kids that didn't cry. No shocker there! While Evan was at camp my sister in-law and I attended different sessions that ranged from genetics, to current research, to skin and social tips. All were beneficial and I look forward to attending again in 2 years.<br />
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Evan with his friends Hunter and Lauren</div>
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(Hunter was recently on the Katie Couric Show raising awareness. <a href="https://www.youtube.com/watch?v=9CFl_qk96Jg">Check it out HERE</a>)</div>
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Evan and his buddy <a href="http://www.blessedbybrenna.com/">Brenna</a></div>
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The last night they held a dinner dance party which the children just loved. Evan was anxious to be on the dance floor with the other children and thank the lord for my sister in-law who walked around with him and helped him dance! My pregnant belly makes it hard for me to do! We were able to snap lots of pictures of Evan and his buddies. And we also had the wonderful oppotunity to meet Rick Guidotti, a former fashion photographer who now advocates while photographing those with genetic differences (learn more about <a href="http://positiveexposure.org/">Positive Exposure HERE</a>). He was kind enough to photograph Evan as well as photographing Evan with all of the children and adults affected with Harlequin Ichthyosis.<br />
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Groovin' on the dance floor with Auntie</div>
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Hugging his pal Calvin goodbye</div>
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<b>Evan's first trip to the Zoo</b><br />
We like to plan things out for perfect weather days, so when we saw the temps and humididty would be low we headed for the zoo. We went to the Beardsley Zoo, about an hour from home, which is not terribly huge but just the perfect size to get the zoo experience and see some monkeys. Evan was delighted to see a range of animals and seemed most excited about the leopard who was pacing around in her den. It was a nice family outing and I look forward for new ones in the future.<br />
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Checking out the animals with Daddy</div>
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<b>A visit from Mickey Mouse</b><br />
Evan just loves anything Mickey. He is obsessed with the show, can't get enough snuggles with his stuffed animals and never gets sick of reading the Mickey Mouse books over and over. My father in-law has a friend who is a big collector of Mickey items. He also happens to have a real Mickey costume which he has been wanting to show Evan. Luckily we were able to plan a day for "Mickey" to come visit and Evan was just ecstatic! He could not get enough of the "big Mickey" that was standing in his living room. It was a precious memory I will never forget!<br />
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<b>Fishing with Daddy</b></div>
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Joe is big into fishing so it is no surprise he wants Evan to learn how to fish too. We live in a lake community so we have access to fishing any time of the year (yes even in the winter!). We brought Evan down to the lake one evening to try and catch the "big one". Our first attempt was not successful but at first you don't succeed.... Another evening we headed down again, this time a bit more prepared. Joe would help Evan cast the line and Evan would reel it in on his own. We started getting a bite and the fish was able to steal the bait a few times. Of course on our last cast with our last bait Evan hoooked one! I think Joe was more excited than anyone! It was another memorable moment of a dad and his boy fishing.. a baby small mouth bass too!</div>
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His first "lunker"</div>
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<b>Summer School</b><br />
As much as summer time usually does not involve school, Evan receives services during a summer program. He couldn't be happier! He goes 3 days a week for 3 hours and is such a happy camper to see the bus back in the driveway. He waves and says, "Hi school bus, my school bus!" every morning with a happy squeal in is voice. He waves goodbye to me with a big smile on his face ready for the day.<br />
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Parachute fun at school</div>
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<b>Excited for the baby</b><br />
We are coming down the home stretch and Evan's little brother should be arriving in a month or so. We constantly talk about the baby with Evan which he gets very excited about. Every time we come upstairs he insists on going to see the "baby's bed". We go into the nursery and Evan explores the room opening every dresser drawer. He seems delighted about the idea of a new baby so I am anxoious to see how he will react when the baby comes and is part of the family. Evan is such a happy well behaved boy that I have a feeling he will adjust well.<br />
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Already lovin' on his brother</div>
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De Dehttp://www.blogger.com/profile/04523375694078425934noreply@blogger.com1tag:blogger.com,1999:blog-6113641574975321616.post-64022473648497357442014-06-12T06:48:00.002-07:002014-06-12T06:53:49.451-07:00Evan is FOUR YEARS OLD!!!We celebrated Evan's 4th Birthday on Monday and had a birthday party for him last weekend. It is quite amazing how time flies and how my little man not only turned 4 but is finishing his first year at preschool. Wow, has he come a long way! The important things in life such as happiness really make our lives complete. This child is literally the happiest kid I know and it melts my heart to know that he is clearly enjoying his life.<br />
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<a href="http://ouryoungwarriorevan.blogspot.com/2012/05/ichthyosis-awareness-month-week-two-my.html">Things were so uncertain the day he was born</a>. Though I was certain he'd survive, I wasn't sure of how life was going to be for him. Now it's obvious that things are going well. He is improving (developmentally) everyday with speech, gross motor and fine motor abilities, his skin care is consistent and our normal which has kept him infection free (knocking on wood) and he is so happy, silly and playful like any other toddler I know. His pleasant and joyful disposition makes me think his little brother-in-brewing is going to give me a run for my money!<br />
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Happy Birthday to my special warrior. You have proven yourself to be a fighter and I know you will go far in life. Keep smiling sweet boy!<br />
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Mickey Mouse Birthday Party!</div>
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