tag:blogger.com,1999:blog-44079736000398056182024-03-13T01:22:16.451-05:00AngelicEars<a href="http://tickers.cafemom.com"><img src="http://tickers.cafemom.com/t/eNortjKzUjI0NjExMlWyBlwwFXMC0A,,16.png" alt="CafeMom Tickers" border="0"></a>Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.comBlogger163125tag:blogger.com,1999:blog-4407973600039805618.post-72225062560486775922017-07-18T15:07:00.002-05:002017-07-18T15:07:48.502-05:00Ush Connections Conference 2017I can't believe it, it's been 365 days, TODAY, since I have written on the blog! <br />
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Since that time, we hosted our first race under Ush One See, which was a huge success! We are in full swing planning our second race, which will be held on September 16, 2017. And we even created a website, <a href="http://www.ushonesee.com/">www.ushonesee.com</a>. Check it out for more info on the upcoming event!<br />
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But what I wanted to write about was the Ush Connections Conference, which was held in Chicago this past weekend. Hunter and I had the wonderful opportunity to attend, and I am so grateful to the Usher Syndrome Coalition for hosting this event!<br />
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There were two researchers who spoke about Gene Replacement Therapy and Stem Cell Therapy. The first, Edwin M. Stone, is the Director of the Stephen A. Wynn Institute for Vision Research at the University of Iowa <a href="http://www.wivr.uiowa.edu/" target="_blank">(<a href="http://www.wivr.uiowa.edu/">www.wivr.uiowa.edu</a>). He is well known for his work in defining the genetic basis of blinding eye diseases: ranging from two of the most common causes of blindness, macular degeneration and glaucoma, to much rarer conditions like retinitis pigmentosa and Usher syndrome. Dr. Stone has been very active in removing the technical, legal and financial barriers between genetic discoveries and the patients who could benefit from them. He founded the Carver Nonprofit Genetic Testing Laboratory at the University of Iowa that provides low cost genetic tests for more than 20 different inherited eye diseases to patients in more than 60 countries. His current interest is in developing affordable gene- and stem-cell-based treatments for all molecular forms of inherited retinal disease.</a><br />
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Dr. Ed Stone started off the day by telling everyone that "My job is to increase the hopefulness of everyone here by at least 100%. And for everyone wanting to ask the same question, which is WHEN: As soon as humanly possible. We are going to do everything we can every single day, as if it were our own children with Usher Syndrome."<br />
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What a wonderful thing to hear, as a parent of a child with Usher Syndrome. I am still in awe of these researchers who dedicate their lives to science and medicine, for reasons we may not even know or understand, our children are at the forefront of their studies. What more could we ask for?<br />
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Also presenting that day was Dr. Ian Han. Dr. Han is Assistant Professor of Ophthalmology in the Wynn Institute for Vision Research at the University of Iowa, Carver College of Medicine. Dr. Han’s research involves translational models of gene and stem cell therapy for inherited eye disease, as well as advanced retinal imaging for improved understanding of vitreoretinal and choroidal pathology.<br />
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Both went into detail about gene therapy and stem cell therapy, neither of which I am educated enough to even begin educating others about. But I will give you my best at what I took away from the day. (with a little help from google of course)<br />
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Gene therapy is designed to introduce genetic material into cells to compensate for abnormal genes to make a beneficial protein. If a mutated gene causes a necessary protein to be faulty or missing, gene therapy may be able to introduce a normal copy of the gene to restore the function of the protein. A vector is a carrier that is genetically engineered to deliver the gene. Certain viruses are used as vectors because they can deliver the new gene by infecting the cell. Those viruses are modified so that they can't cause disease when used in people. Some types of virus integrate their genetic material (including the new gene) into a chromosome in the human cell. If treatment is successful, the new gene will make a functional protein. There are various challenged associated with this process, such as targeting the delivered genes to particular cells and ensuring that new genes are precisely controlled by the body. But in my eyes, it's a very promising approach to those who still have a decent amount of vision. WHEN? Hopefully sooner than later, I wish I had an answer to this question.<br />
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Stem cell therapy is aimed at restoring sight to those who have lost too much vision to really benefit from gene therapy. Stem cell therapy converts skin cells into induced pluripotent stem cells (iPSCs). These stem cells are then converted into retinal tissue and transplanted to those in the eyes that are in late stages of retinal degeneration. The limiting factor to this is that testing for safety takes time, as with all things. It's all still a work in progress!<br />
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Both of these treatments are very promising and are progressing on a weekly basis. As with all things, these are new techniques to treat retinitis pigmentosa, and are not yet perfected. But their response to all road blocks is simple "we will fix it". <br />
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Ush One See funded a natural family history study at LSU - NOLA to support Dr. Jennifer Lentz's work with drug therapy treatments, and the wonderful thing is, this study is needed for any form of treatment. So we are helping to advance every avenue of treatment out there! <br />
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There was one question from an individual with Usher Syndrome during the researcher Q&A that really caught my attention. And she wanted to know why her white cane, which she uses to navigate in life, doesn't have more assistive technology? She wanted to know why cars could detect when another car was stopping in order to prevent a crash, yet the only thing she has to navigate herself through the street with is a white cane. No lights, no vibrations, no technology that seems to be everywhere else these days. And to our delight, they said they are working on these kinds of things for the visually impaired, such as a vest with sensors that could alert someone if they were about to run into something, such as sending vibrations through the vest. HOW AMAZING IS THAT?!<br />
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Thank you, again, to the Usher Syndrome Coalition for bringing our Usher Family together again and for all of the information we received from the presentations. <br />
If there's anything anyone can do to help advance these treatments on a day to day basis, it's tell our story. Create awareness. You have a connection that you think could benefit us? Let us know. It takes time, it takes money, it takes connections and it takes persistence. Thank you all, for choosing to BE THE CURE! <br />
<br />Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com2tag:blogger.com,1999:blog-4407973600039805618.post-90636403491764970122016-07-19T15:08:00.001-05:002016-07-19T15:08:33.864-05:00Introducing.....USH ONE SEE, INC.It's been a while, hasn't it? Well we have had lots going on down south, one of those things being a newly created foundation, Ush One See, Inc. (A play on the Type 1C of Usher Syndrome that Hunter has). Our goal is to raise awareness and eventually raise funds for a cure for the vision loss aspect of Usher Syndrome. Because IT'S OUT THERE! It's so close I can feel it! See below for more information about our upcoming event!<br />
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Can you imagine… your 5 year old son’s prognosis of a rare genetic “orphan disease” reveals the fact that he will start losing his night vision as early as age 7 or 8. Can you imagine… having to tell your son that he was born with Usher Syndrome, through no fault of his own, and that as early as his teenage years, this disease could rob him of his ability to see.<span> </span>Can you imagine… you, your child, your friend, someone you love having to take a class to learn brail and how to use a white cane, before he hits adulthood?</span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">I </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">can because on March 12, 2011, my son, Hunter, was born with Usher Syndrome, the world’s leading combined deaf/blind disease. My husband and I soon learned that we are both carriers of this French/Acadian strand of the gene (Type 1C), and we had passed it on to our first born son. </span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Two </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">weeks after Hunter’s first birthday he underwent surgery and got bilateral cochlear implants to correct the deafness aspect of Usher Syndrome. Today, he is a fully hearing, speaking and thriving 5 year old in a mainstream school and loving life to the fullest extent. </span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Since </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Hunter’s diagnosis in May 2012, I have wanted to start a foundation to educate people, create awareness about Usher Syndrome, and to assist in finding a cure for this debilitating prognosis. So here we are, 4 years later and </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">this </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">dream of mine has become a reality, as well as a reality check. Time is </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">ticking, </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">and there’s no stopping it. This is a grass roots effort to educate others on this disease that affects the people of </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Acadiana</span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">, the people right here surrounding </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">us, </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">in a heartbreaking way. Most people have never heard of Usher Syndrome, but 2 in every 20 true Acadians walk around with the French/Acadian gene of Usher Syndrome, just like my husband and me. </span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">We </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">have started a federally recognized 501(c)3 non-profit, </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Ush</span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;"> One See, Inc., </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt; font-style: italic;">breaking the silence to see the future</span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">. Not only for our son, but for </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">multitudes </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">of other Acadians who were born with this condition. And they’re out there. They’re in our schools and our churches, in our local grocery stores and the neighborhood gyms. Through </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Ush</span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;"> One See, we pledge the highest level of fiscal </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">integrity. With </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">funds </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">raised, </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">we’ll cover event expenses and then put every last cent towards research for a cure of the vision loss aspect of Usher Syndrome.<span> </span></span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">On World Usher Syndrome Awareness Day, </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">September 17, 2016, our first event, Fight for Sight 5K/10K, will be held at the River Ranch Town Square. We will run in honor of Hunter and every other individual diagnosed with Usher Syndrome. We will fight to finish strong, as we have done for the past 5 years, accepting nothing less. I want Hunter to know that we are not going down without a fight, for his sight and the sight of everyone affected by this dreadful disease. </span></div>
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We know the state of the economy today, and we realize there are many causes that need your support. But this is your formal invitation to join us as we rally together to create awareness in our community about a condition that affects so many of our own. There are various ways to show your support, including sponsorships, <span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">participating in the run, in-kind donations, and volunteering. And if nothing else, I hope this </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">letter has </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">served the purpose of educating you a little more about the leading deaf/blind disease in the world. </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Please share </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">what you have learned today. </span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">For </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">more information on our event, see attached flyer and sponsorship information, visit our Fight for Sight 5K/10K event on Facebook, email us at </span><u><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;"><a href="https://www.blogger.com/null"><span style="color: #0066cc;">ushonesee@gmail.com</span></a></span></u><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;"> or call us at <a href="tel:337-523-0519" target="_blank" value="+13375230519"><span style="color: #1155cc;">337-523-0519</span></a>. You may also register for the race, donate, or volunteer directly at <a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://secure.cajuntiming.com&source=gmail&ust=1469045129594000&usg=AFQjCNFrWzIF-NWLSM6VZW4wPKKyxkS0Cg" href="http://secure.cajuntiming.com/" target="_blank"><span style="color: #1155cc;">secure.cajuntiming.com</span></a>.</span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Can </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">you imagine…. Being the parent of the blind man that Jesus healed? Can you imagine…. Being part of the reason we will one day be able to give sight to the visually impaired? Can you imagine… being part of a revolution? </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">This </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">revolution that finds a cure </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">could </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">lead to unimaginable discoveries in healthcare.</span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Can </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">you imagine the possibilities when the people of </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Acadiana</span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;"> rally together for the sake of their own? </span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">I </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">can.</span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">I’ve </span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">seen it happen. And I know it will happen again for our family, our neighbors and our friends with potential blindness in their future. </span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Warmly,</span></div>
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<span style="color: black; font-family: "Segoe Script"; font-size: 12pt;">Elise </span><span style="color: black; font-family: "Segoe Script"; font-size: 12pt;">Babineaux Faucheaux</span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">President</span></div>
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<span style="color: black; font-family: "Times New Roman"; font-size: 11pt;">Ush</span><span style="color: black; font-family: "Times New Roman"; font-size: 11pt;"> One See, Inc.</span></div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com1tag:blogger.com,1999:blog-4407973600039805618.post-27389395603009808462016-04-13T15:48:00.004-05:002016-04-13T15:48:28.491-05:00Annual Audiologist & Retinal Specialist Visit <div>
Hi there, hope all of you are doing well. I wanted to give you a short up-date on Hunter's (who turned 5 on <span class="aBn" data-term="goog_211414424" tabindex="0"><span class="aQJ"><span style="color: #222222;">March 12</span></span></span>) latest trip to New Orleans for a check up of his cochlear implants and also an eye appointment with the retina specialist, Dr. Maria Renoso, both in New Orleans.</div>
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<span style="font-family: Georgia, "Times New Roman", serif;">Our appointment at Ochsner with our audiologist to map his cochlear implants went great. He is doing very well with them and except for some minor issues now (we have had to replace a coil or two, a few wires, and a processor a few, no well several times now) and then, he is having no problems. He hears and speaks very well and we are so grateful for that. And sings/dances, I have to mention that. It rules our household where he is concerned, I believe I have said this a time or five before! So much to be thankful for, we are blessed. The video below shows him repeating words and he can hear sounds as low as 15 decibels which is fantastic! Notice in the video her voice gets lower and lower.</span></div>
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He is playing T-ball again this year and is doing really well with that, also. His balance is better than last year out there, and he hits the ball and throws well and in general is having a good time, which is all that counts, right?</div>
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<span style="font-family: Georgia, "Times New Roman", serif;">His eye appointment showed that his eyes were stable from last year, another thing to be grateful for. I asked Dr. Renoso some questions about the eyes and what to expect and she told me in another year or two they will be able to do a field of vision test. When he's a little holder and can sit still for a little longer. She said if he does start to have any night vision loss, he possibly retreat from going outside at dusk. But for now, we have no worries in the near future :)</span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">Blair and I ran in the Zydeco Half Marathon a month ago and sported our Own the Equinox Team Hunter shirts... and I actually got a comment from a fellow runner during the race that it was a great cause... and I couldn't agree more! If I look like death, it's because I felt like death! LOL</span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">I know this is short, but I just wanted to let you all know that we are doing fine, we love and appreciate each and every one of you. I will be working this year to form a non-profit so that we can get donations for Usher Syndrome research. More to come on that topic at a later date.</span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">Let's get back to this 5 year old looks 10 years old over night!</span></div>
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Hunter - 5 Years Old</div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com0tag:blogger.com,1999:blog-4407973600039805618.post-26543034800817149062015-09-02T15:00:00.001-05:002015-09-02T16:16:20.084-05:00My love/hate relationship with MusicThis is one of those times where I'm hesitant to write how I really feel. My heart is beating fast, but I've been having this nagging feeling just to get it out there. So here it is.<br />
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My son, Hunter, who was born deaf, LOOOOOOOOOOOOOOOOOVES music. And when I say loves it, I mean when he's pulled a typical 4 year old thing- like talk back to his mama, we punish him from the phone/TV/iPad, which 95% of the time means iTunes music or YouTube videos/songs. Isn't that what we're supposed to do- take away the things they want the most so that they think twice next time before talking back?<br />
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Yep. This mama whose son was born deaf but now hears and LOOOOOOOOOOOOVES music, punishes her son from listening to music. And I complain about it. About the amount of music we have to listen to, how loud it is, how annoying it is <i>and</i> how we have to listen to the same handful of songs over and over and over and over again. (Although the dancing aspect is pretty entertaining).<br />
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But if you were a bug on the wall in my house, you may agree that the extent to which we listen to music and the volume that it HAS to be on, is a little absurd. It's the first thing he asks for when he gets home from school and the last thing he's doing before bedtime routines. Not every.single.night. But a majority of the time. Like when it's raining outside or 100 degrees. And on the nights when he is playing outside, the music somehow mysteriously makes its way outside as well! We go to Nana and Pappy's and he's requesting the speaker that connects to the iPad right when we walk in. We go to Maw Maw's and he's trying to fix the cassette player that we used to listen to when we lived with her a year ago (because this obsession is not new!)<br />
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I recently read a <a href="http://kellehampton.com/2015/08/page/9" target="_blank">post</a> by Kelle Hampton over at Enjoying the Small Things where she addressed her daughter Nella's love for Barbie dolls. She said she was never a huge fan, never had them growing up, but that Nella (who was born with DS) is obsessed. But she said the Barbies create some sort of magic for Nella. And through the Barbies, she's heard voices she didn't know were Nella's, phrases she didn't know she could say, and she has observed her deep understanding of conversation. And in some weird way, I compared that story to Hunter's love of music. It's brings out so.much.life. and personality that would never exist (or would possibly exist but be very much downplayed) if he couldn't hear. We wonder all the time what his personality would be like if he couldn't hear. If sign language was his only language. Where would we be today?<br />
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Definitely not at St. Edward School. Possibly not even in New Iberia. Possibly not in Kindergym, Soccer or T-Ball. And absolutely not sitting in our living room night after night watching a dance party happen right there in front of us. Watching the life that music brings to my son who can now hear and communicate and speak like he was never born deaf.<br />
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A friend of mine recently sent me an article about using the words "I get to" instead of "I have to". And the overall concept is to be grateful that we "get to" do things that we may have never been able to do if it weren't for tiny miracles (like babies and cochlear implants). Because not everyone is given the same opportunities we sometimes take for granted.<br />
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I truly appreciate the meaning of the article, and I think twice now when I go to complain about pretty much anything when it comes to my children. I absolutely understand how abundantly blessed I am. I go to bed every night after charging Hunter's batteries for his Cochlear Implants, and I wake up every morning to put them back on his ears. I'm constantly reminded how lucky Hunter is that he can hear. But I can't say it's completely stopped me from complaining. <br />
I still complain that my 4 year old son talks back, that my 20 month old laughs at me when I tell him to do something, and that my husband wants to play golf every weekend. I like to look at my complaints more as comical stories, because a majority of the time I'm laughing (if I'm not crying, ha!).<br />
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But I also feel like if we didn't share our struggles and stories, so many of us would feel so alone. As women in general, we were wired to share, to relate, to listen and to accept each other. The times I feel the most "normal" (whatever that may be) is when a friend says, I've been there, done that.. you'll get through it. And if I can't be real with how I feel, then it's not worth sharing at all.<br />
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So to sum it all up, I'm a typical mom, rolling with the punches of every day life. And ever so grateful to be "typical" and dealing with mainly just the "norm" that comes with two kids. And it's not always rainbows and unicorns around my house. But <span style="font-size: xx-small;">(except for a future without Usher Syndrome)</span> I wouldn't have it any other way.<br />
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Here are a few bonuses :)<br />
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<br />Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com0tag:blogger.com,1999:blog-4407973600039805618.post-85953738883321163222015-08-27T15:18:00.001-05:002015-08-27T15:18:39.389-05:00Own the Equinox #USHEQX #Sept19<div style="text-align: center;">
So this little thing that I'm a part of called the <a href="http://www.usher-syndrome.org/" target="_blank">Usher Syndrome Coalition</a> is putting together this little fundraiser for this little (what the professionals like to call "orphan") disease. Orphan is such a sad word, I wasn't the least bit impressed when I heard that Usher Syndrome is an orphan disease. But I guess no one consulted me.</div>
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Running has never really been "my thing" although, on various occasions, I have tried to make it just that. I'll run a 5K here and there (dying by the end) for various causes, and when I was in a boot camp after I had Hunter, our trainer actually had us up to 7 miles on the weekends. That was pure craziness and I haven't even made it to the 4 mile mark since that time when Hunter was 9 months old. I don't run because I enjoy it, I run because it's a form of exercise that doesn't require much. No weights, no mats, no instructors... just the open road and good music.</div>
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As Mark stated in a recent blog post, the Usher Syndrome community kept saying- We need a global Usher Syndrome Awareness Day. And it's been done. It will be the third Saturday in September, every year, beginning this year, until Usher Syndrome is history and Usher Syndrome Awareness Day becomes a simple reminder of the great things an energized community can accomplish!</div>
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Since Day 1, our entire family has been trying to make Usher Syndrome common knowledge. We have been spreading the word, educating others, and trying to make it a priority. </div>
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And I'm excited to say that my priority every day for the next (now 24) days is my mile-a-thon. <br />
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The goal of this fundraiser isn't even to fundraise (although every penny counts)... it's to <span style="font-size: x-large;">SPREAD.THE.WORD.</span></div>
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So if you want to be a part of this soon to be revolution, if you want to <em>be a part of the cure-<strong> </strong></em>just follow our journey. Talk about our journey. Spread our purpose far and wide. SHARE our pictures, SHARE our posts. You never know who might see your two second effort. Or who might overhear your conversation about this #OwnTheEquinox thing you're friend of a friend of a friend is taking part in for her son. </div>
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We don't want your money (we need it) but what we do want, and want the most-- Is your support. Your words are more valuable than your money. Spread the word. Spread awareness. </div>
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Be the cure. </div>
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Below are my recent instagram posts (username: ebfoeshay)</div>
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Feel free to follow me, repost, or follow on our Angelic Ears and Eyes <a href="https://www.facebook.com/angelicears?ref=hl" target="_blank">facebook page</a>. </div>
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I will start updating that page with this post and my daily posts from here until September 19th. And if you don't want to see so many posts, feel free to unfollow until after the run! :)</div>
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Day 1 (New Iberia, LA): My mile-a-thon journey to 26.2 by September 19th. And I promised I would document my daily runs. So here we go @ushcoalition #OwnTheEquinox #USHEQX #ushfamily</div>
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Day 2 (The Gym of New Iberia, LA): I really do despise running. But hey, I'm here. #USHEQX #OwnTheEquinox #ushfamily @ushcoalition</div>
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And here is the link if you think man, I really would love to contribute a little because I know it would go a long way. Click here:</div>
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<a href="https://usher-syndromeorg.presencehost.net/take-action/own-the-equinox-fundraisers/elise-faucheaux.html">https://usher-syndromeorg.presencehost.net/take-action/own-the-equinox-fundraisers/elise-faucheaux.html</a></div>
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And for those of you in the Lafayette area who are interested, we will be joining <a href="https://usher-syndromeorg.presencehost.net/take-action/own-the-equinox-fundraisers/cecilia-hebert.html" target="_blank">Cece Hebert's team</a> (because her parents are way more on top of this whole thing than I am!) on September 19th in Girouard Park to complete the last 1.2 miles together. Contact me for more details. Anyone can join for free. Walk/run/bike/jump rope... bring your kids, bring your dog, bring your grandmaw. </div>
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The Faucheaux Family </div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com0tag:blogger.com,1999:blog-4407973600039805618.post-4227272479597176032015-08-04T15:53:00.001-05:002015-08-04T15:53:58.692-05:007th Annual Usher Coalition Family Conference<span style="font-family: Garamond;">The man in the picture below, Mark Dunning, Chairman of
the Usher Coalition I might add, thinks and truly believes he is just a regular
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<span style="font-family: Garamond;">I hope one day he realizes that he is FAR FAR FAR more
than just a regular guy. He says the only thing that sets him apart is that he
has a daughter with Usher Syndrome. Which couldn't be further from the
truth. <o:p></o:p></span></div>
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<span style="font-family: Garamond;">He may, at one time, have been a regular guy. But he was
a regular guy with an extraordinary vision, a lot of determination, and a caring heart. He set out starting the Decibels Foundation, which lead to <a href="http://www.usher-syndrome.org/" target="_blank">The Usher Syndrome Coalition</a>, (anyone recognize that face on the Homepage?) which has close to 1,000 members from countries far and wide. Plus he has a full-time job. And instead of vacations to the beach, he uses his vacations to visit research facilities, and to speak on behalf of the people with Usher Syndrome, spreading awareness, educating others about the advancements in treatments and clinical trials, and offering support and resources to people trying to cope with the emotional and physical effects from Usher Syndrome. </span></div>
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The fist time I met Mark in person was at the Usher Syndrome Coalition's Family Conference in St. Louis just 2 months after we got Hunter's Usher 1C diagnosis. After I introduced myself, he remembered our email correspondence and asked how old Hunter was. I said 16 months, and I will never forget his response-- "You guys have nothing to worry about, he won't even be affected by the vision loss". I think his response was a combination of his true optimism towards a cure for Usher Syndrome, and a deep faith and hope that if he continues repeating it to himself and others, that it will eventually come true. Although we aren't 'blind' to the fact that he's already 4 years old and there are no clinical trials in place for Usher 1C, I know that there are numerous people out there who are working day in and day out as far as humanly possible, to make it happen.<br />
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Mark recently wrote a <a href="http://www.usher-syndrome.org/our-story/blog/great-urgency.html" target="_blank">blog post</a> that really touched me. As I'm sure it did the entire Usher community. He isn't just a regular guy. He's a talented and touching writer, and an inspiration who it at the forefront of this grass roots effort to find a cure. Don't worry Mark, that's what we all want for Hunter... as well as every individual affected by Usher Syndrome around the world.<br />
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Since the family conference was in New Orleans this year, we had the pleasure of bringing both of our boys and having some of family members attend as well. My Aunt Kathleen Blanco, former Governor of LA gave the welcome speech, which was very inspiring to everyone. My parents, Blair's mom and his Aunt, Uncle and cousin were there as well. <br />
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And as you can see below, Hunter was VERY proud to be on the Coalition's new banner! Our photographer, Kent Fleming, really does an amazing job at capturing the most captivating shots!<br />
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We are so blessed with such a supportive network.</div>
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Thank you to all of you who supported our conference in so many various ways. Your kind words, your donations, your thoughts and prayers are always appreciated.</div>
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Elise</div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com0tag:blogger.com,1999:blog-4407973600039805618.post-49513656163537235842015-07-10T10:50:00.000-05:002015-07-10T10:50:04.035-05:00PerfectI've grown to hate the word perfect. Since the day Hunter was born, the word perfect made me cringe. People all around me were having babies, and each.and.every.one. of them was just.so.<em>perfect</em>. Except for mine. Mine wasn't perfect, at least not in the formal definition: "having all the required or desirable elements, qualities, or characteristics; as good as it is possible to be."<br />
As little as my mind was during my mid-twenties, it took almost a handful of years to be able to accept the word perfect back into my vocabulary. Even a year and a half ago, when Harrison was born, I never ever ever used the word perfect. My thinking was that I didn't want to offend anyone who had a baby with a disability who wasn't able to describe their tiny miracle with an adjective like 'perfect'. Not that people were offending me by using the word, I was quietly taking offense against myself (if that even makes sense) when other people described their babies as perfect. <br />
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But if you look carefully at the definition of perfect, the last leg of it states "as good as it is possible to be", and that's the part that I wasn't looking into enough. <br />
Hunter was born a healthy baby with all of his limbs, that's as good as possible. All we had really hoped for. But in my tiny little head, he still just wasn't fit for the word perfect.<br />
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What a shame for me to feel that way about my son. Why couldn't I ever call him perfect to my family and friends? Because he was perfect to us. He was perfectly born to the perfect family to fit HIS perfectly planned out needs. <br />
Blair and I aren't perfect. We are very far from it. But we are perfect for each other, and we are perfect for Hunter. And by perfect, I mean perfectly learning from our everyday mistakes, perfectly trying to improve ourselves, our habits, our daily lives and perfectly loving our kids to the best of our ability. <br />
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Every day I go around noticing imperfections about myself. My hair, my body, my diet, my attitude, my work, my memory, my love for God, my organization (or lack thereof). And then one day, I saw Hunter taking pictures with my phone, and I heard him whisper, "Oh no, that one is not perfect" and I stopped in my tracks. I had no idea where he had heard the word perfect (except for maybe if he was inside my head) and I wasn't even sure he knew what it meant. But I decided from that day forward that I needed to give the word perfect another chance by giving it another meaning. And that new meaning for me is being perfectly created in the image and likeness of God. Because in God's eyes, we are all perfect. Flaws, wrinkles, weaknesses and all. We were created uniquely perfect, and that's good enough for Him. <br />
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I don't want my kids to grow up comparing themselves to the rest of the world and thinking that everything they say and do and see has to be perfect. I just want them to know that they were born that way. And when I look at Hunter's baby pictures, I know he was perfect, even though I wasn't willing to admit it. I know he was created perfectly by God and placed into the family that could perfectly give him what he needed (with our imperfections as well.)<br />
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So welcome back to my vocabulary, perfect. You are beautiful and allowable in my world again. <br />
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Ps. I haven't gotten that <em>perfect</em> family of 4 shot lately because half the time my 4 year old is hoarding my phone or my 1 year old has "hidden" it somewhere, so here are a few others (photobomber included)<br />
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<br />Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com1tag:blogger.com,1999:blog-4407973600039805618.post-87668595344603474232015-07-10T10:49:00.003-05:002015-07-10T10:49:40.035-05:00Annual CI Mapping & More UpdatesWe traveled to New Orleans a few months ago for Hunter's annual mapping update and to visit a retinal specialist who spoke at the Usher Symposium in Baton Rouge back in October. I apologize it's taken me so long to post an update, but the update is boring. And I have to say, I am a big fan of boring when it comes to these kinds of things. We don't want any road blocks thrown our way, we don't want any unusual results or problems. We LOVE boring, "he's doing very well, keep up what you've been doing and see you back in a year". AMEN! Thank you baby Jesus!<br />
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Here are two videos from his mapping appointments. His ears are hooked up to the computer and when he hears a beep, he has to put the banana in the bucket. It's interesting to watch and learn about. I say interesting, but I should say miraculous!<br />
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The retinal specialist sees a good number of Usher Syndrome patients, including children, and we wanted to be a part of her practice so that we can start seeing her on an annual basis, on top of his normal ophthalmologist. She took lots of pictures, looked in his eyes, and said she also sees the US indications, but that overall the eye health looks better than others his age. Amen! Thank you baby Jesus! She was amazing, and we are lucky to be able to see her. </div>
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And let's just give the Aqua+ accessory another shout out, because it makes swimming lessons a breeze! Hunter is acting like a fish and really learning how to swim well by himself!<br />
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Hunter also played his first season of T-ball this past spring. We found a helmet that we were able to cut the padding out of so that his ears could fit without too much trouble, and although things started out a little rough, he was doing SO well by the end of the season. He even started running in the right direction by about the 5th game :) See below. My boy, playing t-ball with his friends. He can do whatever he puts his mind to!<br />
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And of course his biggest fan was always in tow...</div>
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Here is a picture from Hunter's 3rd hearing birthday!</div>
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And the following are pictures from Hunter's LAST day of Pre K 3! It's crazy how much he grew during this school year, inside and out :)</div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com0tag:blogger.com,1999:blog-4407973600039805618.post-34160791676167805762015-07-10T10:20:00.001-05:002015-07-10T10:20:41.582-05:00The New Face of Usher Syndrome When we started this Usher Syndrome journey with Hunter, we said we were going to give Usher Syndrome a new definition, a new face, a new hope for everyone affected by it. <br />
Although the time I spend working with the Coalition and others affected by US is only a very small amount of the time I WISH I could put forth, everyone's efforts are definitely coming together, no matter how big or small.<br />
<br />
I am in New Orleans this weekend for the Usher Syndrome Family Conference, and as I logged onto the Usher Coalition's website, I see my baby's face on the <a href="http://www.usher-syndrome.org/" target="_blank">home page</a>. A sweet sweet face, with such an innocent look. Big blue eyes that have been complimented since day 1. And he has no idea that his face is being viewed all over the world. Various countries, thousands of people, old and young. He has no idea that his diagnosis gave his mama a new purpose for living. Something to fight for, something to win, a story to share and relate and laugh and cry with. I don't have much experience with this diagnosis just yet, being the Hunter is only 4. But I feel like I've learned more about my family, myself, my friends, my support systems, and about life in general in the past 4 years than I did in my first 27 years of living. As my mom always says about herself, I'm a work in progress, but constantly striving to improve. Finding beauty in the unexpected. Finding joy in our journey to Holland. Learning that as lonely as we may feel at times, there's always someone out there who is feeling the exact same way, whether they share it on social media or not.<br />
The people we will gather with at the family conference tomorrow all have one common goal. One common purpose and that's why they travel from near and far to be here. It's nothing my close friends will ever understand, but that's ok. It's nothing you can relate to until you're dealt the same cards. To be brutally honest, it's freaking scary at times. At times, I let my fear of the unknown get the best of me. But this weekend, it's a positive outlook into what potential cures are on the cusp. It's a heart-warming gathering that puts our perspectives back into place. That makes us feel a little less alone. <br />
<br />
That little boy in the picture has no real idea of what he's coming to New Orleans for. He's mainly concerned with the exciting opportunity to be able to sleep in a hotel for two nights :)<br />
One day he will get it, one day he will realize that his face is the new face to Usher Syndrome. He's going to move mountains, and with great faith and hope, his future will be the new definition of what a life with Usher Syndrome looks like. <br />
<br />
Warmly,<br />
Elise<br />
Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com0tag:blogger.com,1999:blog-4407973600039805618.post-67277759263034923802015-03-17T16:19:00.000-05:002015-03-17T16:25:05.246-05:00Ode to Walt Disney World - 2015<span style="font-family: Georgia, "Times New Roman", serif;"></span><div style="text-align: left;">
<span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-family: Georgia;">Our family went to Disney World in February as part of the Cochlear Celebration Convention. I have started a separate post about the convention, but there was SO much going on at Disney that I figured a little poem would suffice to sum up the trip. (Thanks to Annie Flavin for the poetry inspiration) When people ask me how it went with two little ones, I say it was like childbirth-- painful yet exciting and wonderful. And even though part of you just wants to be home, when you get home you forget all of the painful parts and want to go back and do it all over again :)</span></span></div>
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<strong>Ode to Walt Disney World</strong></div>
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<span style="font-family: Georgia;"></span> </div>
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<span style="font-family: Georgia;">Master packing lists that never fail</span></div>
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<span style="font-family: Georgia;">Yet still forgetting things utilizing overnight mail</span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;"></span> </div>
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<span style="font-family: Georgia, "Times New Roman", serif;">Chilly early mornings & late nights</span></div>
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<span style="font-family: Georgia;">Cranky <strike>parents</strike> children and <strike>spousal</strike> sibling fights</span></div>
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<span style="font-family: Georgia;"></span> </div>
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<span style="font-family: Georgia;">Buses, planes & monorails</span></div>
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<span style="font-family: Georgia;">Constant excitement that never fails</span></div>
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<span style="font-family: Georgia;">Hotel rooms, sand pits & a swimming pool</span></div>
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<span style="font-family: Georgia;">The most basic things were oh so cool</span></div>
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<span style="font-family: Georgia;">Mickey Mouse, Donald Duck, Elsa & Tinkerbell</span></div>
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<span style="font-family: Georgia;">Parades we are familiar with all too well</span></div>
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<span style="font-family: Georgia;">Naps in strollers & Nemo shows</span></div>
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<span style="font-family: Georgia;">A luau dinner and swords that glow</span></div>
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<span style="font-family: Georgia;"></span> </div>
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<span style="font-family: Georgia;">Oh that ittle bitty Harrison</span></div>
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<span style="font-family: Georgia;">Can't turn away for one split second</span></div>
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<span style="font-family: Georgia;"></span> </div>
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<span style="font-family: Georgia;">Busted noses and busted lips </span></div>
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<span style="font-family: Georgia;">Lost shoes resulting in shopping trips</span></div>
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<span style="font-family: Georgia;">Rollercoasters, face painting & flying dumbo</span></div>
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<span style="font-family: Georgia;">Hunter still calls it the "flying gumbo"</span></div>
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<span style="font-family: Georgia;"></span> </div>
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<span style="font-family: Georgia;">Never ending fireworks that lit up the sky</span></div>
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<span style="font-family: Georgia;">Now I see why all their prices are so darn high</span></div>
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<span style="font-family: Georgia;"></span> </div>
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<span style="font-family: Georgia;">Are we done yet Hunter? Can we please go now?</span></div>
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<span style="font-family: Georgia;">Not yet Mama, look Mama, Wow!</span></div>
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<span style="font-family: Georgia;"></span> </div>
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<span style="font-family: Georgia;">Disney food, oh the food</span></div>
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<span style="font-family: Georgia;">Nothing else put us all in a better mood</span></div>
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<span style="font-family: Georgia;">And until next time, forgetting all the meltdowns & fights,</span></div>
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<span style="font-family: Georgia;">Printing out our memories & counting down the nights. </span></div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com4tag:blogger.com,1999:blog-4407973600039805618.post-6528772370141359502015-01-26T15:11:00.001-06:002015-01-26T20:26:21.195-06:00Catholic Schools Week 2015Today is one of the greatest weeks at St. Edward School. It's a celebratory week of all Catholic Schools around the nation. And I think it's very deserving to be celebrated. <br />For those of you who have been following me for a while now, you know that I went to St. Edward School K-3rd and that St. Katharine Drexel is the founder. My brother went there as well as many of my cousins. We attended mass every Friday morning as a school, rain or shine. Some of my most memorable events from my childhood involve events held through the school, and some of my bridesmaids at my wedding and still to this day, some of the closest friends I have, I met while I was at St. Edward. After graduating 3rd grade from St. Edward, I attended Catholic High School in New Iberia from 4th-12th grade. Now that I am back living in New Iberia, I get a relaxed feeling knowing my kids will be brought up in a quaint town with a solid Catholic education. <br />
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Well someone shared a blog post written by a dad about his two young daughters who attend a Catholic school, and I just thought sharing the actual article would let it speak for itself: <br />
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<i>Author’s Note: For Catholic Schools Week, I’ve been asked to speak to my parish congregation about why, as parents, we chose to send our kids to Catholic school. While my testimony spoke about our Catholic school specifically, I have changed the name to reflect what I think is common to most Catholic schools. Here was my answer. </i><br />
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It was years ago, but it seems as clear as if it were yesterday. I was talking with my dad when he stopped me short. He looked me square in the eyes and simply, but firmly said,<br />
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<strong><em>“I’m proud of what you do, but I love you for who you are. Are you listening? </em></strong><em><strong>I’m proud of what you do, but I love you for who you are.</strong>”</em></div>
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I don’t recall the circumstances that prompted him to say that or my sheepish response, but I’ll never forget how special it made me feel.</div>
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This wasn’t the first time my dad said this. Nor would it be the last. Growing up, my parents made abundantly clear that to get anywhere in life you need to set clear goals, have a strong work ethic and be honest with God and yourself. And being raised by a school superintendent, English teacher and two sisters aspiring to become teachers, you can only guess the value we placed on education. So between my home and my local public school, there were high expectations to work hard, learn and succeed. <em>But that was not all.</em><br />
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I was taught that while accomplishments matter and success is important, achievement uninformed by faith, purpose, & character will ultimately be hollow. As my dad said, “<em>It’s not just about what you do, it’s about who you are.” </em>It was a philosophy I have never forgotten and still value deeply.<br />
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Well, time has passed. I am now married with two young wonderful children. And three years ago, we had to make an important decision. In the west Metro, arguably a hub of the finest public and private school education in the country, where would we send our daughters? Instead of schools immersing students in language or the arts, we opted for a different type of immersion: <em>Catholic Immersion</em>. We chose to send our girls to the Catholic school here. <em>And we couldn’t be more satisfied.</em><br />
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Now, I can recite for you the data about the robust performance of our Catholic school students on standardized tests or the enviable student-teacher ratio. I could impress you with the diverse class offerings in art, music and Spanish or the deeply skilled and compassionate staff. I could even dazzle you with the Smart Board technology, iPad utilization and cutting edge internet based teaching tools. <em>I could</em>… but that vital data is proudly displayed on the website, in the brochures or available on a school tour. Instead, let me share with you the <em>true spirit</em> of my daughters’ Catholic School:<br />
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At my daughters’ Catholic school,<br />
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<strong><em>- a child once shy to speak much in class is soon beaming while reading prayer intentions at the School Mass</em></strong></div>
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<strong><em>- you may receive a smiling email from a teacher telling you your daughter looked up at him and said, “God bless you” because he picked her favorite game in gym class.</em></strong></div>
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<strong><em>- you find parents who tow a tractor hundreds of miles simply to pull a school float in the local parade.</em></strong></div>
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At my daughters’ Catholic school,<br />
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<strong><em>- you may find your child spontaneously apologizing at the end of the day for something she said at the beginning of the day simply because of what she learned from the priest’s homily at the School Mass</em></strong></div>
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<strong><em>- you encounter staff, parents and children enthusiastically showing up to pack food for the hungry, rake leaves for the elderly and plant pinwheels for peace</em></strong></div>
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At my daughters’ Catholic school,<br />
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<strong><em>- teachers approach you about the right book or exercise for your child, the principal knows your kids and cheers them on by name, and the priest offers wise support at just the right time.</em></strong></div>
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<strong><em>- you may find a child at home thoughtlessly humming a hymn or telling you an interesting fact about St. Benedict, or at the school Talent Show telling corny jokes or belting out Frozen’s “Let It Go”</em></strong></div>
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<strong><em>- staff, parents and students pray for and rally around a spouse who has been sick, a baby soon to be born, or a sixth grader saying goodbye</em></strong></div>
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You see, our Catholic school is more than just a school, it is a deeply invested community<em>. A community</em>. And in a world grown increasingly cold and harsh, a community of faith and warmth is an immeasurably important springboard in these young kids lives. And in ours. Undoubtedly, this school prepares the mind. But by God, it prepares the soul as well. To paraphrase my dad, “<em>Catholic schools are</em><em> proud of what our kids do, but love them for who they are.”</em><br />
If you are considering a school community for your child that is rich in academics and rooted in faith, please consider calling, visiting or touring a Catholic school. Believe me, you won’t be disappointed.<br />
<span><br /><br />Read more: <a href="http://www.patheos.com/blogs/acatholicthinker/2015/01/why-my-kids-go-to-catholic-school/#ixzz3Pxbg72AO" style="color: #003399;">http://www.patheos.com/blogs/acatholicthinker/2015/01/why-my-kids-go-to-catholic-school/#ixzz3Pxbg72AO</a></span><br />
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<span>The week before Hunter's surgery, the principal at St. Edward, who is still there, contacted us to let us know that the entire school had been praying for Hunter and his upcoming surgery. I posted about it here and will share the link again so that you can see the video if you haven't been following that long. It STILL brings me to tears when I watch it. It was amazing. And the teacher who started it all, is now Hunter's Pre K 3 teacher. The kids with their hands in the air, the priest and his heartfelt blessing, it brought me to tears the moment I got up there. </span><br />
<span><a href="http://angelicears.blogspot.com/2012/04/anchors.html">http://angelicears.blogspot.com/2012/04/anchors.html</a></span><br />
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<span>I could not agree more with the paraphrase, <em>"Catholic schools are proud of what our kids do, but love them for who they are."</em></span><br />
<span>Most of you know that I was a nervous wreck to put Hunter in school. I was scared they wouldn't be able to work his ears, I was scared people would point and laugh, I was scared he would feel different and worst of all, I was scared he would be treated differently. These were all MY fears. But this couldn't be further from the truth. After my first couple of weeks emailing the teacher and principal who so openly addressed every concern I had, I had to just let go. And when I tell you, he LOVES school, that's an understatement. When school was closed for a teacher retreat a few Fridays ago, he asked me about 72 times to go. </span><br />
<span>I have gotten a handful of videos of Hunter dancing at mass on Fridays, in the front of church, right where he had his special blessing. In the exact same spot that we stood almost 3 years ago. That kid loves.to.dance. And I told the teacher to reel him back in if need be, but she said oh no, he's praising the Lord and that's exactly what we want him to do! I wish I could post a video of him dancing but there are other kids in the background and I don't want to publish the video without their permission, and it would just be too much! Here is one that I took from a mass, zoomed in and cropped all of the other kids out because I absolutely love it. That smile and those hands, that's my happy boy. That's my comfortable boy, feeling right at home. The exact look I think of every time I think of St. Edward School. </span><br />
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I got an email from Hunter's speech therapist at school one day with the following:</div>
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What more could a worried mother ask for? They love him for him. They love his passion for dancing and singing, they love his uniqueness and they embrace him just like our family does. I wouldn't trade his school family for anything! <br />
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*permission was granted by these classmates' parents :)</div>
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And last but not least, this photo was taken with a few of the students from St. Edward and Catholic High in New Iberia. A banner was made to be hung in the cafeteria and it is in the Acadiana Lifestlyle Magazine. Little bitty Hunter right in the middle :)</div>
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Happy Catholic Schools Week!<br />
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Warmly,<br />
Elise<br />
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<br />Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com2tag:blogger.com,1999:blog-4407973600039805618.post-49312033106707783632014-12-12T16:31:00.000-06:002014-12-15T08:20:38.507-06:00The Mom Job<div style="text-align: center;">
<span lang="EN" style="color: #222222;"><em>"Being a mom is one of the hardest jobs anyone can do, and it will take you to your very limits sometimes. You cry, you hurt, you try, you fail, you work and you learn. But, you also experience more joy that you thought was possible and feel more love than your heart can contain. Despite all the pain, grief, late nights and early mornings your children put you through, you would do it all again for your children because they are worth it to you."</em></span></div>
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<span lang="EN" style="color: #222222;">I am going to a retreat at the end of January with an AMAZING blog write, author and mother of a special needs child, Kelle Hampton. The name of it is <a href="http://www.kellehampton.com/" target="_blank">Enjoying the Small Things</a>. And she, along with two other women are putting on a retreat in Ojai, CA called Spark. 22 women, one room, and a weekend full of story telling, story writing, connecting and learning. It's intimidating for me to go on a trip with twenty something other women I've never met and sleep in the same villa with twenty something people I don't know from Adam. But I am looking forward to expanding my comfort zone. I am looking forward to sharing my experience as a mother, and I am looking forward to raising awareness about Usher Syndrome, something a friend of mine pointed out that I didn't even think about when signing up to go. </span></div>
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<span lang="EN" style="color: #222222;">I felt guilty at first for taking the time away from my family for something that on the fore front looks like only I will benefit from. But I truly believe that the benefits will outweigh the cost of the weekend. I hope to grow in ways that I never imagined I would. I hope to come back a refreshed mom and wife to my kids and my husband. </span></div>
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<span lang="EN" style="color: #222222;">I realize I am saying this with only 2 children tugging at me during their minimal waking hours during the work week, but it's still a hard job. I go from work at the office, to my job as a mom at home. And these days, my boys are attached at my hip. Poor Blair tries to distract them, but when you've got a teething one year old and a 3.5 year old who wants the same attention as his brother, it tends to wear your down. There are so many times when I wonder if I am making the right decisions for my children. And as much as I try to compare my decisions to other moms, it only wears me down more. There's no use in comparing because everyone's household behind closed doors is different. And I'm starting to realize that most of what we go through are normal age appropriate phases. And like my own mom used to say- this too will pass. And it's true. These exhausting nights and early (very very very early) mornings won't last forever. And the things that wear me down the most will probably be the things I miss the most in a few years. </span></div>
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<span lang="EN" style="color: #222222;">Last weekend was the last bottle Harrison took. Blair and I always said we can't wait until we can just put the baby bottles away for good. And now that we have, I had a little moment of sadness come over me. Harrison turned 1 this past week, and I told Blair the other day that things seem to be getting easier in general with the boys, but I miss my babies. And since the bottles come with the babies, I guess I kind of miss the bottles sometimes as well....</span></div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com2tag:blogger.com,1999:blog-4407973600039805618.post-34955811803526922922014-12-03T15:05:00.001-06:002014-12-03T15:05:35.762-06:00New House/Thanksgiving 2014The second weekend in November, we were finally able to move into our new house. The boys are really getting into a good routine, and we have some normalcy back in our lives!<br />
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Harrison has already managed to find his way around with the toy most likely to give any adult a headache after 30 seconds ;)</div>
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And this is what a typical night in our house looks like these days: </div>
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It's not the best picture, but it's a picture that I've always dreamed of. I'm in a constant state of "be careful, not his head, watch his neck, I SAID NOT HIS HEAD, gentle, NOT THE HEAD!"</div>
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But it's been so fun to watch them playing together.</div>
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And before we knew it, it was Thanksgiving week! Blair and I took off the Wednesday before to take the boys to the Children's Museum and Harrison and I ran in the Miles Perret Cancer Services 5K. Poor baby was out at a mile and a half, it was past his bedtime!</div>
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And Thanksgiving Day. I think it's been the best yet. The weather played a huge part, it was absolutely beautiful! Not to cold and not to warm, but perfect boys outside football weather! </div>
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We are SO unbelievably blessed with two amazing families who come together in such great spirits. Spending the day with our families was truly what made my Thanksgiving so amazing. </div>
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The football commentators ;)</div>
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I have to say, the amount of things that my family and I have to be thankful for this year is ridiculously overflowing. My special needs son is in a mainstream private school and flourishing like I never dreamed he would. He has friends. F.R.I.E.N.D.S. When he was getting his ears, I was unsure how his classmates and colleagues would react. I was scared they would make fun of him and not befriend him. But I was gladly proven wrong. He has a teacher who welcomed him with open arms, has learned his strengths and weaknesses, and works to make him a better student every single day. That is one of the greatest gifts a mother can be given. Teachers play an amazing role in this world, and they don't get enough credit for raising our children and spending more time with them during the week than we do. He has a speech therapist who takes him on special walks twice a week to pray to Mary and St. Katharine Drexel. That in itself is one of the things I am most grateful for. He has a school family who has also embraced him and his love for dancing and singing. I have received multiple videos from Friday masses at St. Edward's where Hunter is leading the dance moves in front of church completely in his element. My mom and I talk all the time about what Hunter's personality would be like without Cochlear Implants. Without his love for music and talking to other people, it simply would not be what it is today. Not even near it. I know everything in my posts boil down to being grateful for his CIs, and I know we would survive without them. But it would be a longer and harder journey on us all. </div>
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And as much as I hate Usher Syndrome and everything it stands for, I am grateful for my Usher Syndrome family. Everyone has a cross to carry, and with our cross comes an amazing support system. People who are carrying the cross as us, walking in the same shoes as us, and all working towards a brighter future for our children. I am so grateful for the strangers, the friends, and our family members who are helping us carry our cross, because without them, Blair and I would not have the strength to do it all. For you all, we are so very grateful.</div>
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And my immediate family. For my two beautiful children and my better half, my husband. They are my world. Harrison keeps me on my toes ALL waking hours and never lets me take my eye off of him. But he always turns around with a smile to light up the room (and normally some foreign object in his mouth :/ ). For our Faucheaux Family Fun days, and for our "everyone woke up on the wrong side of the bed" days, we are in it together, and we always make it to the other side together. I often think about the saying- what if you woke up with only the things you thanked God for the night before? And I thank God for you 3, each and every night. You all make me laugh so often, sometimes make me cry, but ALWAYS make me realize how lucky I am to be your mama and wife. </div>
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I hope everyone has something to be thankful for this holiday season. Thank you all for following our journey!</div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com2tag:blogger.com,1999:blog-4407973600039805618.post-23537980768439633722014-12-03T15:04:00.001-06:002014-12-03T15:05:35.760-06:00Halloween 2014I know I am way past my Halloween picture deadline, but now that I am getting a chance to catch up I will do a few separate posts. <br />
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(everything goes STRAIGHT into his mouth)</div>
Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com0tag:blogger.com,1999:blog-4407973600039805618.post-89860165802319866672014-10-13T13:11:00.000-05:002014-10-13T13:12:23.373-05:00I Heart Fall!Wow, I just realized it's been 2 months since my school post about Hunter starting Pre K 3. I always think about writing on the blog and know I need to catch up, but things have been non-stop since school started. Our new house is a little less than a month away, so I will finally have my feet back on the ground again once we are in.<br />
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Hunter has been doing wonderfully at St. Edward School. The first week or so was rough, he would cry/whine about going and he didn't like going to after school care. Which in our family is a must because I can't be there for 2:50 to pick him up every day. But now he has really gotten into the swing of things and actually likes going to after school care. When people ask him what his teacher's name is, he always includes the ASC teacher, Mrs. Jennifer. He has really gotten the days of the week concept down pat and every morning asks what day it is and where we are going that day. He knows now that we go to school Monday through Friday and stay home on Saturdays and Sundays. He also receives speech therapist twice a week at St. Edward with a lady who has sent me some of the nicest notes about his progress.<br />
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Honestly, this woman has no idea how much these emails ease my worries. I always pray that Hunter does great things in the future, but to get reassurance that someone else believes that will happen, and especially from a professional, makes all the difference in the world!!<br />
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I also wanted to mention that on October 25th I will be participating as a member of the family panel at an Usher Syndrome Symposium in Baton Rouge at the Pennington Biomedical Research Center. We are focusing on getting families from Louisiana together to discuss all aspects of Usher Syndrome. Dr. Jennifer Lentz who spoke at our fundraiser last September in Broussard is putting this on along with the LSU Health Sciences Center out of New Orleans. If you know anyone from Louisiana and surrounding areas who would be interested, please email <a href="mailto:strotochaud@usher2020.org">strotochaud@usher2020.org</a>.<br />
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My post will be a little short, but I will add a few pictures. Pictures tell more of a story than my updates anyway.<br />
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Riding in the new neighborhood!</div>
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And this munchkin is now actually 10 months... just haven't taken that picture yet! #secondchildsyndrome</div>
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Family Vacation, Orange Beach, AL 2014</div>
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It's soccer time!</div>
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Friends from school at their Race for Education</div>
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Farmer's Dress day for Sugarcane Festival</div>
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McNeese Football Game</div>
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Harrison, just trying to keep up with Hunter. But really just in it to chew on the padding!</div>
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2014 Gumbo Cookoff in New Iberia </div>
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It's good to be home again :)</div>
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Stay tuned for upcoming Halloween costumes... we are going trick or treating at Cajun Palms this weekend!</div>
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elise</div>
Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com2tag:blogger.com,1999:blog-4407973600039805618.post-55138588592129763742014-08-11T12:47:00.001-05:002014-08-11T12:47:38.178-05:00This just happened....Today was Hunter Paul Faucheaux's 1st day of Pre-K 3! It's a full time class, 5 days a week that goes from Pre K 3 through 3rd grade. What an amazing and beautiful journey he has been on to have the ability to be mainstreamed and to attend the same little private school I did when I was in elementary in New Iberia. If you remember our summer trip to PA to see St. Katharine Drexel's shrine with Mrs. Karen, the principal of St. Edward, you know that St. Katharine Drexel founded St. Edward School. And Mrs. Karen has upheld her image and her spirit in everything that they do at St. Edward's. <br />
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I have to say I am one proud mama. It took a village to get Hunter where he needed to be, and I mean a <strong><em>village</em></strong>. From everyone in our family who cheered, and prayed, and babysat, and drove Hunter to Baton Rouge, to all of his therapists and everyday caregivers. And to our friends. I know Blair and I would still be standing today without our friends who gave us the courage to push on when we didn't think we could. <br />
This picture right here is worth a thousand words!<br />
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<br />Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com2tag:blogger.com,1999:blog-4407973600039805618.post-44510702826106689892014-08-06T15:04:00.002-05:002014-08-06T15:04:50.604-05:00"Uncertainty and Uncertainty"<em>I am reposting Mark Dunning's most recent blog post. Mark started the Coalition. But that statement doesn't give him enough credit because he started SO much more than just an organization. He started an extension of my family. He started a movement. He started something that is making an impact worldwide. Men/dads/husbands like Mark Dunning are one of a kind.</em> <br />
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Uncertainty and Uncertainty</h1>
<i class="date">July 30, 2014</i><br />
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<em><strong>by Mark Dunning</strong></em><o:p></o:p></div>
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Usher syndrome is about uncertainty. It is not knowing. It is fearing the future and desperately clinging to joyful moments in the present.<o:p></o:p></div>
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So is cancer.<o:p></o:p></div>
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My daughter, Bella, has Usher syndrome. My wife, Julia, has cancer. They are mother and daughter and, like all mothers and daughters, they are very similar and very different. They are different people<span style="font-size: 10pt;"> with different diseases living their lives in different ways.</span></div>
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Julia has a rare form of cancer. It is slow moving, and no one really knows the expected progression of the disease. We are told mortality rates, but those are guesses. We are told she will be fine, that she will live a long life. We are also told that there is not enough data to know for sure. For now, all we can do is monitor it and hope for the best.<o:p></o:p></div>
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We lack data on Usher syndrome. There is no clear information on the expected progression of the disease, only anecdotal evidence, really. People with Usher type 1b slowly lose their vision but there we have no defined milestones, no clear understanding of when, or if, Bella’s vision will get worse. All we can do is monitor it and hope for the best. Monitor and worry. <o:p></o:p></div>
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Like Usher syndrome, there is controversy around the treatment options for Julia’s form of cancer and not enough data to prove efficacy. Vitamin A and DHA and lutein appear to slow the progression of Usher syndrome. Sunglasses might help. We don’t know for sure. For Julia, it is surgery and a form of chemotherapy called Hyperthermic Intraperitoneal Chemotherapy (HIPEC) that itself is controversial. There is not enough evidence to know for sure if it will cure the cancer. If not, the only option right now is to have the same surgery and chemotherapy again. And again. And again. Monitor and hope for the best. Monitor and worry.<o:p></o:p></div>
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This post isn’t about Usher syndrome. But, as always, it is. Bella was always going to be fine in the future. Treatments are coming. We’ll save her vision. Even if we don’t, Bella will be happy. She has a great attitude about life. She has a lot of support. We’ll always be there for her. <o:p></o:p></div>
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Unless we aren’t. What then?<o:p></o:p></div>
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Bella has always lived for today. She soaks in the happiness of the moment. Julia is different. Happiness is always a future return. She fears it in the present. Good things today mean bad things tomorrow. That’s how she gets through tough times. There will be sunshine tomorrow. Suffering today is just investment in future happiness. <o:p></o:p></div>
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Usher has challenged that approach to life. It is bad today. It will be worse in the future. How do you get through today when there is no forecast of sunshine for tomorrow? And what if there is not tomorrow at all?<o:p></o:p></div>
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While Bella whistles a tune through the present, Julia is adapting. She takes each day in slivers now, balancing wisps of happiness with tweaks of fear. She dips a toe in the bath and pulls it back, catches glimpses of contentment through the looming fog of cancer, of Usher. Somewhere out there is the life she wants for herself, for Bella, but it drifts in a cloud like a dream, far away from where she stands. And that is what is best for Julia. Today is not misery. Today is not glorious. Today is just something to be gotten through while tomorrow lurks.</div>
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<span style="font-size: 10pt;">That’s still hope, though, isn’t it? To, each day, still believe in tomorrow? There is still a future out there for Julia, for Bella. That future will have good things in it. It’s not a given. It </span><span style="font-size: 10pt;">can’t </span><span style="font-size: 10pt;">be taken for granted. But tomorrow has never been anything more than hope. The future is never anything but opaque. After all, there are few certainties. In our family, only three</span><span style="font-size: 10pt;"> come to mind.</span></div>
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Bella has Usher syndrome. Julia has cancer. And, right now, today, they have each other.</div>
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<strong>Usher Syndrome Coalition</strong><br />
© 2014 Usher Syndrome Coalition</div>
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<em>Here is the original blog post, and from there you can find many more. And they are all amazing.</em></div>
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<a href="http://usher-syndrome.org/index.cfm/event/blog.detail/blogId/11668#blogTitle">http://usher-syndrome.org/index.cfm/event/blog.detail/blogId/11668#blogTitle</a></div>
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Warmly,</div>
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elise</div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com0tag:blogger.com,1999:blog-4407973600039805618.post-91001905142095897112014-08-04T11:03:00.002-05:002014-08-04T15:11:05.066-05:00Recent Happenings!I had a huge gap in postings so here is a short recap of what our summer has been looking like as far as every day life!<br />
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Blair got a new job back in May on the complete opposite side of Lafayette from where he was, which also means on the complete opposite side of town from Nini's house. So unfortunately, after 2.5 wonderful years of Hunter staying at Nini's house during the day, we had to make a move for both boys, for logistical reasons only. So Hunter and Harrison started at a new daycare in Broussard called Buttons and Bubbles. It was not an easy adjustment for Hunter, he asked for Nini a lot and even this morning mentioned going to her house, which he hadn't done in a while. But it's been good for him, it's been a growing experience for us all. Speaking of growing, Harrison is growing like a weed! Not to mention he started crawling and pulling up on everything this summer. But Buttons and Bubbles will also soon be in the past because both boys started at an in home sitter in New Iberia today. And as crazy as this seems, the in home sitter lives in the house that we lived in when I was born. Talk about going back in time many many (too many to count) years ago! Hunter will only be there a week because... drum roll please.... he is starting <strong>Pre K 3</strong> at St. Edward's school in New Iberia!! When we went to buy school uniforms a few weeks ago, I about fell over when he had his uniform on. He looked like he was 10 years old! I've already started preparing myself for the first couple of weeks of dropping him off. It's going to be so so great for him, but I'm just not sure I am emotionally prepared yet! Please keep him in your thoughts and prayers because adjusting to change is not one of his strong points ;)<br />
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In the meantime, we had our house up for sale because we started building a house in New Iberia back in March. It's three doors down from my parents, next door to one set of grandparents and in the same neighborhood as my other grandmother plus 10 minutes from Blair's parents, so Hunter is in hog heaven! We got an offer on our old house mid June and closed this on July 15th. But since we were in Boston last weekend for the Usher Syndrome Coalition Family Conference, we moved out the weekend of July 4th and moved in with the grandmother until our house is complete. We are shooting to be in mid September.<br />
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The Sunday after we moved out, I asked a girl who has taken pictures of the boys before to come and take a few shots of us at the old house. It was such a bittersweet moment for me. It was the house I brought my two boys home to from the hospital. It holds so many great memories including many many firsts for both of my boys. I will never ever ever forget the night Hunter crawled and the day he walked through the door and straight into my arms for the first time. I will miss our dancing in the kitchen and the living room and cooking pizzas in the kitchen. All things that of course will be done in our new house, but there's nothing like your first family home. Here are a few of the pictures from Nicole Bell Photography:<br />
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I started this post a few weeks ago, so I can update you guys on living in "the berry" because we have been there for almost a month. And it's been so nice. I never realized how small my front yard was until we started playing in my grandmother's yard. And my parents have been a big help and Hunter gets to spend more time with them, and of course living with my grandmother has worked out really well for all of us. (at least we think so ;)Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com1tag:blogger.com,1999:blog-4407973600039805618.post-76516280262174277802014-07-28T09:09:00.003-05:002014-07-28T09:09:53.777-05:00Follow us on Facebook!Good Morning!<br />
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After attending the Usher Syndrome Coalition's family conference a few weeks ago, we were flying high with all of our fellow parents of kids with US, and we decided to start a facebook page for everyone to be updated on Hunter's journey. This page was also more so created for each.and.every.one.of.<em>YOU</em> all over the WORLD to share with your friends, family and co-workers to start talking about Usher Syndrome. To give Usher Syndrome a new light, and not make it out to be a life without life. Because Usher Syndrome in fact does not stop a person from living. It just changes their every day routines. Get to know someone with Usher Syndrome and you will realize it's nothing contagious, it doesn't harm his or her spirit. It's just something that has made these people a little stronger because they have to work a little harder than most!<br />
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<a href="https://www.facebook.com/angelicears">https://www.facebook.com/angelicears</a><br />
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Like it. Share it. Talk about it. Advocate for it. We aren't asking for your money, we just want your support.<br />
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And before you know it, you will be the reason that there is a cure for it!<br />
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Many many thanks!<br />
Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com0tag:blogger.com,1999:blog-4407973600039805618.post-31756888742163675752014-07-25T14:52:00.000-05:002014-07-25T14:52:46.017-05:00Annual Eye Appointment 2014Today we had Hunter's annual (for now) eye appointment with Dr. Piccione in Lafayette. He is one of the only pediatric eye doctor's in the area and Hunter has been seeing him since we got the Usher 1C diagnosis. <br />
I probably didn't really even mention to anyone, except in passing, that he had this appointment. I don't think I really put much stock into anything going on at this age because the "typical" vision loss progression isn't supposed to set in for another few years. **PLUS- we will have some form of treatment before then, right?! :)**<br />
Anyway, the nurse did a few tests with a computer screen in the distance and a few black and white pictures and he had to identify what they were. They were actually black lines that weren't connected, I wish I could find an example online but I can't. It was like 3 semi-circles with three vertical lines and the dots on top of the lines for the candles. I think I'm confusing myself trying to explain it but anyway. He then had to do it with one eye covered and match the picture on the screen to the same picture on a card he was holding. He probably got 95% of them correct.<br />
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Then they had him look at a few pictures like this to test for color blindness. There were shapes in the pictures and he nailed them all :) Here is an example of that one.<br />
<a data-ved="0CAUQjRw" href="http://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&docid=9nP02ZzrPMyjjM&tbnid=HImYdiI0uQsewM:&ved=0CAUQjRw&url=http%3A%2F%2Fwww.huffingtonpost.com%2F2013%2F09%2F06%2Fcolorblind-quiz_n_3867952.html&ei=y6rSU6CFC-Od8QHms4DYBQ&bvm=bv.71778758,d.aWw&psig=AFQjCNESRcbJTEViZQgRlc1S5jrKC9v2JQ&ust=1406401587510713" id="irc_mil" style="border-image: none; border: 0px currentColor;"><img src="http://images.huffingtonpost.com/2013-09-05-ScreenShot20130904at1.53.01PM.png" height="246" id="irc_mi" style="margin-top: 54px;" width="320" /></a><br />
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They dilated his eyes afterwards so we went look for a pair of solid black sunglasses next door while waiting to see the doctor. Well all he wanted to do was try on the glasses and say, "Look, I'm NANA!" Although I don't think she found it too comical, I sure did! <br />
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Then shortly after, we were called to the back and Dr. Piccione came to look at Hunter's eyes. He's a man of very few words, so I made sure to talk a lot to get my questions and concerns answered.<br />
After looking in his eyes for a minute or so, he said that he was slightly near sighted, but not enough to require glasses. But I asked if that had anything to do with Usher Syndrome and he said no, just merely genetic. (Blair and I both wear contacts because we are near sighted, so that's probably inevitable for both of my boys. Blair started wearing glasses in the 4th grade.)<br />
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I also asked how many Usher patients he sees, and he said probably 10. Now that's pediatric patients, which is probably a good number because MOST children in this area who are born deaf do not know they could have Usher Syndrome until a later age when they start having vision issues. We had the genetic testing done due to family history, and that is why we got our diagnosis at such a young age. <br />
Also, I asked if they took pictures of the eye because my eye doctor did just a month or so ago and we could see 3D images of the eye and I figured it would be a good thing to have. He said yes and they ended up taking a picture and will take another one a year from now to start comparing and looking for any visible changes.<br />
The doctor did mention that he has very thin blood vessels, which is an indication of some type of RP. He said he normally wouldn't mention it unless there was family history of RP, but since we have it he said the cells are thinner than normal. But I guess that's par for the course. We are just so so grateful that at this point, things are looking good. <br />
As the late Kidd Kraddick used to say, keep lookin up cause that's where it all is! :)<br />
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<br />Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com3tag:blogger.com,1999:blog-4407973600039805618.post-86915009299990475232014-07-18T16:23:00.000-05:002014-07-18T16:23:19.471-05:00#USH2014<br />
<span style="font-family: Georgia, "Times New Roman", serif;">This past weekend, Blair, Hunter and myself flew a non-stop flight from New Orleans to Boston for the 6th Annual Usher Syndrome Coalition's Family Conference on Saturday. We thought it would be Hunter's first flight back when we booked it, before knowing about our PA trip, so we thought a non-stop flight would be best. But keeping a toddler entertained and sitting in the same seat for 3 hours was exhausting. Our high hopes of having him nap failed until 10 minutes before we landed in New Orleans on our way home, at which point we kept him up so that he could sleep in the car rather than getting a little power nap before our 2 hour drive home from the airport!</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">We stayed at a very centrally located hotel in Boston, so every corner around us had shops, restaurants, and historical buildings. It was an absolutely beautiful and clean city. We got there around 730 Friday night and Hunter & Blair got to experience their first subway ride together from the airport to our hotel. (I of course was having a slight anxiety attic while always keeping my body between Hunter and the subway tracks!). But he loved it. He loved the train and he loved to people watch. We all crashed pretty hard after a long day and woke up early to attend the conference. There was a babysitting service for all of the children there so Hunter got to play all day while we attended the conference. </span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">As a member of the coalition's board of directors and governmental relations committee, I was asked to give the welcome speech to start off the day. They wanted me to touch upon the work we have been doing in DC to try and obtain funding from the NIH and to announce the location of the family conference for 2015 since I organized booking it in NOLA for 2015. I even got a few cheers after announcing the location, so I hope a lot of people can make it! The first half of the day included talks by a few different professionals just touching upon genetic testing, the psychological effects of living with US and what some of their patients have experienced, while after lunch there was a family panel that included 4 people with US and one mom of a 4 year old girl with US. The family panel is always the best part of the day. It's real people speaking from the heart about their own experiences with Usher Syndrome. Their experiences were raw. And everyone loves hearing something "real". </span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">One of the members of the panel was a 32 year old dad with Usher Syndrome. What an amazing journey he is on, living with a wife and two kids, while losing his eyesight rapidly. He didn't find out he had US until after he was married with a child at the age of 27. When asked what the most difficult part of living a life with Usher Syndrome was, he began to tell a story of when he and his family were in Las Vegas. Walking the crowded strip was not an easy task for him, so his 6 year old son came up with a system of different hand squeezes for when he needed to go right, left, stop, slow down. You can't help but tear up when a this tall, athletic and quite normal looking guy who is going through everything Blair and I are at this point in our lives, has to deal with vision loss on top of raising two kids and taking care of his family. His 6 year old was ultimately taking care of him. His 6 year old is dealing with his dad's vision loss, and quite well from what I understand.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">Another member of the family panel that struck me pretty hard was a mom of a 4 year old girl. She is from Great Britain and came introduce herself to me during one of the breaks since she knew from my speech that I had a 3 year old with US. I have to say, she is one of the sweetest people I have ever met. Besides the fact that I was obsessed with her accent. </span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">And Chloe Joyner, she is a beautiful person inside and out. Her 4 year old daughter is the luckiest little girl on earth to have Chloe as her mother. Her words brought me to tears, there was no fighting them back. Thank you, Chloe, for being a member of the family panel and for sharing experiences with us. Your positive attitude and outlook on life as a parent of a child with US is so very admirable. </span><br />
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<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 107%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><o:p><span style="font-family: Georgia, "Times New Roman", serif; font-size: small;">I can't even begin to explain how meeting so many new people at the conference this year touched my life. When Blair and I attended our first conference in St. Louis 2 years ago, I walked in, saw what seemed like a million white canes and seeing eye dogs, and I walked right back out because I couldn't keep my composure. But the community that is coming together, the parents who are starting foundations, planning fundraisers, and merely walking up to me saying thank you for your speech, I have a child with US too. Those are the people that I secretly consider my best friend when I start to think about Hunter's future and how no one in my immediate support system will ever come close to imagining the worry that Blair and I have for Hunter. But my secret best friends, they have that pit in their stomach just like me, and that knot in their throat when things get all too real at doctor's appointments that "normal" children never have to go through. But they also have a drive to redefine Usher Syndrome, and that's my favorite thing that we all have in common. I can't wait to see them all again next year.</span></o:p><br />
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<o:p><span style="font-family: Georgia, "Times New Roman", serif; font-size: small;">And here are a few pictures from Boston, as well as a video of Hunter in the hotel room. He is catching on to more and more these days, I just love to sit there and listen to him talk. It's still so surreal to me ;)</span></o:p></div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com1tag:blogger.com,1999:blog-4407973600039805618.post-41974024865350180152014-06-09T09:01:00.000-05:002014-06-09T09:01:04.779-05:00St. Katharine Drexel<div>
This is a "guest post" from my mom, Hunter's Nana:</div>
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This past weekend Elise, myself and Mrs. Karen Bonin (Principal of St Edward Catholic elementary school) took Hunter to Bensalem, Pennsylvania to the Shrine of St. Katharine Drexel. <a href="http://www.saintkatharinedrexelparish.org/StKatharineDrexel.html" target="_blank" title="http://www.saintkatharinedrexelparish.org/StKatharineDrexel.html"><span style="color: #1155cc;">http://www.<wbr></wbr></span>saintkatharinedrexelparish.<wbr></wbr>org/StKatharineDrexel.html</a> We have a special place in our hearts for St. Katharine as both Elise and her brother went to elementary school in New Iberia (at one of the schools that her Sisters of the Blessed Sacrament founded), They have been an active part in praying for Hunter and supporting his journey. St. Katharine founded schools for children and young adults all over the USA and Haiti. </div>
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Hunter did awesome on the airplane rides both there and back. We were so happy about that, because he is quite active. The cochlear implant device that he wears has a place to plug in earphones, so we brought a portable DVD player and he watched movies when he wasn't watching the clouds, playing games or snacking. Really, he just did so well. </div>
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We were welcomed by the Sisters of the Blessed Sacrament when we arrived there, several of whom used to be at St. Edward school years ago. We went to mass <span class="aBn" data-term="goog_256900189" tabindex="0"><span class="aQJ"><span style="color: #222222;">Sunday</span></span></span> morning in their chapel and to our great excitement and surprise (but not Mrs. Karen's surprise, as she had arranged it for us), a man named Robert Gutherman was there. He was St. Katharine's first Vatican-approved miracle that was necessary for her to be canonized as a saint. In 1974 at age 14, Mr. Gutherman was cured of deafness in one of his ears (the other ear was fine) after a long and painful infection in that ear which finally culminated in an unsuccessful surgery. He was told by the surgeon, while in the Recovery Room, that he would never hear again out of that ear. Young Robert continued to tell the surgeon that he actually COULD hear out of that ear, and finally his hearing was tested and they discovered indeed that he did have hearing in that ear. The medical experts called the cure medically inexplicable. Enter God, right? Because with God all things are possible! </div>
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Mr. Gutherman had been an altar boy at the Mother Katharine Drexel chapel (where we met him) and his very large family had prayed often to Mother Katharine for his healing and relief of his severe pain. Their local priest had them document all that had happened and it was eventually forwarded to Rome. He was interviewed and examined many times, and in 1988, 14 years after the miracle happened, Pope John Paul II declared his as the first documented miracle of Katharine Drexel. AND WE MET THIS MAN!!!!! He told us he had been praying for Hunter for 2 years and following his blog, since Mrs. Karen told him about Hunter. She had met him there on a visit two years prior. We were overwhelmed with gratitude. It was such an honor and privilege to meet him. He came with us to the crypt of St. Katharine where we sat Hunter on it, prayed for him and then Hunter said a Hail Mary and Glory Be like a pro! Mr. Gutherman stayed and visited with us a little longer, such a kind and interesting man. We are so very grateful for his prayers and keep him in ours.</div>
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St. Katharine's second Vatican approved miracle was also a cure of deafness in Amy Wall, a one-year-old girl.</div>
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The rest of our trip included wandering around the beautiful grounds, visiting with the sisters and........entertaining an active 3-year-old. He had them all so charmed, especially when he would say his prayers. And he didn't knock anyone over who was in a wheelchair or using a walker, that was a grand success. Because running is what he does, there is very little walking. lol. We also brought him to the altar at the chapel and sat him up there where Sr. Agnes had him touch the tabernacle, telling him that Jesus lived in there and asking for prayer and healing. It was such a beautiful witnessing. </div>
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We are thankful to Mrs. Karen for accompanying us and giving us so much history (and help with Hunter) and the sisters for their hospitality and letting us be a small part of their lives. There are many sisters who live there in various states of retirement/active work/good health/bad health. They devoted and still devote their whole lives to serving God and community , and we were blessed just to be in their presence. </div>
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Hunter went on the elevators there about 172 times. It was ALLLLLL he wanted to. Well, except go on the bus, the train, the escalator and the airplane at the airport. We soaked up so much from this experience and all too soon had to return home. God is good.</div>
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Here are a few of the pictures from the trip-</div>
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Here are a few pictures of the grounds:</div>
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And the breathtaking Chapel:</div>
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Here is a picture of Mr. Gutherman and Hunter at the Shrine:</div>
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And the wonderful principal at SES, Mrs. Karen in there as well :)</div>
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This was when Hunter was saying his prayers at the Shrine:</div>
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And a few more at the Shrine:</div>
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Hunter, Nana and Sister Agnes at the Altar:</div>
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Saint Katharine Drexel:</div>
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Hunter with Sister Michelle who was principal when I went to SES:</div>
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Hunter with Sister Agnes:</div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com2tag:blogger.com,1999:blog-4407973600039805618.post-76974932125663991472014-05-27T13:17:00.000-05:002014-05-27T13:21:33.474-05:00Cochlear Aqua+Ladies and gentlemen... look what Cochlear has come out with to make a our lives a <em>whole</em> lot easier :) It's a cover for the processor and a different coil that Hunter can wear and not have to worry about getting it wet! (and it still works today, PHEW!)<br />
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(Picture and video are posted mainly for my CI Group friends)</div>
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Here is a video of Hunter wearing it yesterday in the pool!</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/5x4PtSOMc5A?feature=player_embedded' frameborder='0'></iframe></div>
Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com3tag:blogger.com,1999:blog-4407973600039805618.post-57667016571893391512014-05-07T14:20:00.003-05:002014-05-07T14:33:22.921-05:00Seeing the worldI just watched a video of a little boy named Hunter who died of cancer this year. He loved the WWF and got the chance to meet his biggest hero and "wrestle" on stage with him, and after one of the real fights that the wrestler won, he went up to this little boy Hunter and thanked him for the strength he gave him to keep pushing and asked him to fight just as hard. Whoa. What a tear jerker.<br />
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I don't know if it was the fact that his name was Hunter or just the whole kid cancer thing that gets me every time, but I couldn't help but think about those make a wish kids, the Kidds' Kids trips, the opportunity to give children with disabilities the chance to experience things they otherwise may never have been given the chance to experience. One little boy on the Kidds' Kids trip this year went because he is losing his vision, and the parents wanted him to be able to experience Disney World before he went completely blind. Well just this morning, I got an email for the Cochlear Celebration that Cochlear America puts on every other year in Disney World for recipients and families of people with Cochlear Implants. It's more of a seminar for families but they have special events planned for the children as well. And when I sent it to Blair to see if we could go, he said yes right away. And to be honest, I was shocked. Sometimes when we are debating taking the kids places, we decide it's just easier to stay home with the ages that they are. And I was sure he would say the same thing about this opportunity. But I'm so glad he didn't. <br />
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I think I keep holding on to the idea that there will be a cure before Hunter loses his vision, but he's 3 now, and as quickly as those three years have passed, another five will be under our belts before we know it, his vision may start to deteriorate, and we won't be able to turn back time. I just don't want to wish we would have done more with Hunter if there is no cure by the time he starts to lose his vision. I once overheard Blair telling a friend that he wanted to be able to take him hunting at an early age so that he can experience the joy Blair does of shooting a deer before he loses his vision. (Sorry for those not from South LA, but it's a huge thing down here. Hunting is in Hunter's blood, whether he wants it or not.) And if you ask our friends and family, we really<em> never.stop</em>. We always have something going on. The first few months after Harrison was born, we stayed home more than ever. And it was kind of nice for a change, but I will tell anyone, I'd rather spend money on traveling and experiences than on clothes and shoes and things that don't create memories for a lifetime. (Yes, I still buy clothes). But if I don't take a flight somewhere every 6 months or so, I start to get cranky. And I am grateful for our support system, for our family members who help us make these things possible, and those who also provide great experiences and great memories for Hunter. We couldn't do any of this without them.<br />
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We can hope and wish and pray for a cure, and we can have all the faith in the world. But we can't turn back time, and I don't want to regret not making the most out of the only memories Hunter may potentially have of seeing the world. <br />
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Thank you all for listening, it's been an emotional day from the 4:45am start, and after watching that video, I needed to write and let out a good little cry. I just write a lot smoother when I am crying ;)<br />
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This dude finally let me put a hat on him when the sun was in his eyes Sunday afternoon :)</div>
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eliseHunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com1tag:blogger.com,1999:blog-4407973600039805618.post-16908181420358461022014-04-29T13:55:00.000-05:002014-04-29T13:55:35.986-05:00Happy Easter 2014 Our Easter holidays were definitely eventful... Poor little Harrison got RSV coupled with a double ear infection and Hunter broke a bone in his foot while jumping during his Little Gym class. The on-call doctor and I got to know each other REAL well over Easter :/<br />
But we are almost all nursed back to good health!<br />
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This easter bunny picture was right after Harrison coughed so much he threw up his bottle.... BEFORE we knew he had RSV.</div>
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And this Easter Day picture, well it wasn't exactly what I had in mind but that's what I get when I try and force a decent picture out of the two of them!</div>
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My little champ in his boot for the broken bone. He has already mastered running in it, although I giggle watching him do it.</div>
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Sweet Harrison feeling better!</div>
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And...My boys :) </div>
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Hunter's Mommyhttp://www.blogger.com/profile/01527129723974391558noreply@blogger.com1