tag:blogger.com,1999:blog-8523066770709260152024-03-12T22:19:23.545-04:00Evie the Extraordinary and Her Mommy: The Journey As We GoWhile sharing our journey with Down Syndrome, we want to help other parents with our experiences, as well as spread awareness about what it means to have Down Syndrome (spoiler: it means great things!). amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.comBlogger169125tag:blogger.com,1999:blog-852306677070926015.post-82123247545779800782021-09-06T21:20:00.006-04:002021-09-06T21:20:50.165-04:00It's Official! The Polka-Dotted Penguin book has launched!<h2 style="text-align: left;"><span style="font-family: arial;"><span style="font-weight: normal;">It's official! My new children's book, "The Polka-Dotted Penguin" has launched today! </span></span></h2><h3><span style="font-family: arial;"><span style="font-weight: normal;">How fitting that my labor of love launches on Labor Day. The writing of the book and putting all the parts together took about a year. It was definitely a pandemic-worthy project. </span></span></h3><div><span style="font-family: arial;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPQFj8oXv5J9r4LN-f1IskdsOV3FbgTc23LjVr9GnfDONGEmodHNkPSP4EfT8HuFSqKsuXV9eFF66a5ItLj_o9jA1kgMt5QjOM5Lgeyo-hizmnoUzIRUTViu1Sy2pDl0syFHQoFaYgvIND/s988/IMG_4950.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="632" data-original-width="988" height="205" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPQFj8oXv5J9r4LN-f1IskdsOV3FbgTc23LjVr9GnfDONGEmodHNkPSP4EfT8HuFSqKsuXV9eFF66a5ItLj_o9jA1kgMt5QjOM5Lgeyo-hizmnoUzIRUTViu1Sy2pDl0syFHQoFaYgvIND/s320/IMG_4950.jpg" width="320" /></a></div><br /><span style="font-weight: normal;"><br /></span></span></div><h3><span style="font-family: arial; font-weight: normal;">I wrote this book because I wanted more books available for sharing with Evie's class for World Down Syndrome Day on 3-21 and for Down Syndrome Awareness Month in October. I'm happy to release my new book just in time for October! My hope is that this book will be used as a tool to start conversations with children about how to treat others who may look or act differently than they do. It's all about inclusion and celebrating differences. </span></h3><h3><span style="font-family: arial; font-weight: normal;"> This book is perfect for ages 4-9, or any ages who love penguins, or really anyone who loves Evie!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDdljPFXGvSCHKe_Jk3Ne9fob5muaG7CA39tDCVdIWC63Km4buS3vsCLDxxhJVVhf0wbMuaNsoTeGaECC4Rwc6G39Q26UqUS-bUBFVS5a30UpVDHKneghAWkB7AiRM9vSZPppr6rmL7GdU/s4032/IMG_4972.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDdljPFXGvSCHKe_Jk3Ne9fob5muaG7CA39tDCVdIWC63Km4buS3vsCLDxxhJVVhf0wbMuaNsoTeGaECC4Rwc6G39Q26UqUS-bUBFVS5a30UpVDHKneghAWkB7AiRM9vSZPppr6rmL7GdU/s320/IMG_4972.jpg" width="240" /></a></div></span></h3><h3><span style="font-family: arial; font-weight: normal;">Here's how to order:</span></h3><h3><span style="font-family: arial;">Barnes and Noble (Hardcover):</span><span style="font-family: arial; font-weight: normal;"> <a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl py34i1dx gpro0wi8" href="https://www.barnesandnoble.com/w/the-polka-dotted-penguin-amy-moy/1140115530?fbclid=IwAR2CdOvy4rLkNuPMY_oPsIQKjifrUJRlstfzSG682ovRUWXZjV2BIHfFP8k" rel="nofollow noopener" role="link" style="border: 0px; box-sizing: border-box; color: var(--blue-link); cursor: pointer; display: inline; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation;" tabindex="0" target="_blank">https://www.barnesandnoble.com/.../the-polka.../1140115530</a></span></h3><h3><span style="font-family: arial;">Amazon (Hardcover, Paperback, Kindle)</span><span style="font-family: arial; font-weight: normal;">:<a href=" https://amzn.to/3ti1ed5" target="_blank"> <span style="box-sizing: border-box; color: var(--blue-link); cursor: pointer; list-style: none; text-align: inherit; touch-action: manipulation;">https://amzn.to/3ti1ed5</span></a><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl py34i1dx gpro0wi8" href="https://amzn.to/3ti1ed5?fbclid=IwAR36ZUvysK0jG9x7DlI3aMaZfk0Nu8W2cgPzyNpJQDH1LLFM_GcxKTsZ3QU" rel="nofollow noopener" role="link" tabindex="0" target="_blank"><br /></a>Thank you for sharing with your friends and family! We appreciate your help in spreading inclusion and disability awareness to everyone you know.</span></h3><h3><span style="font-family: arial; font-weight: normal;"><br /> Much love and many flipper waves from us! Thanks so much for your support! <br /></span></h3>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com2tag:blogger.com,1999:blog-852306677070926015.post-89375960858924263032021-09-01T21:21:00.003-04:002021-09-01T21:21:50.146-04:00Our New Book: "The Polka-Dotted Penguin"<p> Dear Evie Fans,</p><p>I am so excited to share with you that my new children's book, "The Polka-Dotted Penguin," is coming out soon! I've been setting up the hardcover, paperback, and electronic versions, and I'm close to the finish line! Evie has read it and insisted on reading it to ME instead of the other way around. I'm very ok with that. Here's a sneak peek at one of my favorite page spreads! </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEkNXFw1VA8EBkgMT6gTWsbprtZwAQjU2Jdmh0ugyLH8yVqan76LgXeS5-wYkKqhoognx0rX-dqSLv9h2UI_I4VB6PIIu0aRVW4Hr_QNvLYX2JP208CFt-r6hlt6RTySLdwxcuyRoJlk0Y/s4032/IMG_4874.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEkNXFw1VA8EBkgMT6gTWsbprtZwAQjU2Jdmh0ugyLH8yVqan76LgXeS5-wYkKqhoognx0rX-dqSLv9h2UI_I4VB6PIIu0aRVW4Hr_QNvLYX2JP208CFt-r6hlt6RTySLdwxcuyRoJlk0Y/s320/IMG_4874.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div>The reason I started writing this book was because I didn't feel there were enough books to choose from to read to Evie's class for World Down Syndrome Day. I also wanted a book that was an enjoyable story that featured my favorite animal, the penguin. Making the penguin a little different from the other penguins was the start of my book. <p></p><p>I can't wait to share my first book with you all! I just need to figure out how to have a penguin launch party, and then I will post further details!</p><p>Hope you all have a wonderful long weekend!</p><p><br /></p>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-28638611428399610962021-06-28T20:22:00.000-04:002021-06-28T20:22:04.104-04:00Evie's Adventures in Storyland, from a sensory sensitive kid's point of view<p>Hi Evie fans! </p><p>Our first post-pandemic trip was to the <a href="https://www.storylandnh.com" target="_blank">Storyland amusement park in Glen, New Hampshire</a>! Evie did well with the 2.5 hour drive--there was a lot of sing-shouting to Laurie Berkner songs on the way there. </p><p>About halfway to New Hampshire, I had the sickening feeling of realizing that<i> I had forgotten all of Evie's carefully calculated and labeled blended food. :( Mom of the year right here!</i> Thankfully, she isn't on formula anymore, and there was a super Walmart in North Conway, so we made a stop to buy a hand blender and some prepared foods for me to blend! </p><p>We stayed the night in <a href="https://www.guestreservations.com/comfort-inn-suites-conway/booking?gclid=Cj0KCQjw5uWGBhCTARIsAL70sLIr2-emAWzTeTeOA76BPNkKVuOiZgUskKgVzfRWl3E69JvsisTHkX4aAsElEALw_wcB" target="_blank">Comfort Inn at North Conway</a>. It was packed full of families, and had a mini-golf adventure right next to the hotel. As soon as we settled in, I painstakingly microwaved a turkey dinner in the kitchenette, threw in some heavy cream, spinach, and cranberry sauce, and blended it all in a plastic Rubbermaid bowl. Thankfully, Evie agreed to eat this as her lunch and dinner for the next two days! Breakfast was a snack-size apple pie blended with heavy cream, applesauce, and Noosa yogurt. It did the job, but I think she was glad to go back to blended pancakes at home. <i>If you're a blended food mom like me, be sure to bring a travel portion of dish soap and a travel brush with you to clean your child's dishes in the kitchenette sink. We have a nice one from Oxo that I also forgot to bring!</i></p><p>We pre-purchased our tickets to Storyland (this is a MUST during post-COVID craziness), and we arrived about 45 minutes after the 9:30 am opening. There are handicapped spaces right near the entrance, but we snagged the last one. The line wrapped around the parking lot, but it moved quickly and we were in within 10-15 minutes. Evie hid her face while we were in line, but she did ok. </p><p>GUEST SERVICES</p><p>Our first stop was Guest Services to request a Medical Access Pass (MAP). I told the Guest Services rep that my daughter had sensory needs and she immediately took out a paper pass that had Evie's name, age, and color of her clothing on it. I suspect that we could have asked immediately to enter Guest Services instead of standing in line to enter, but it turned out ok. </p><p>STARTING OUT</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhxXPQF6FTFV_GcMAGKQyFG8c_rNLpA11DcUjMmIvMhAR1d-aUH4kWC8VnpE8F7D8IiyW3w3OlunKtdjV_QiA-1ejHoX4bmZP964btbqIbsjPUjZkQC2q-8pyIAbaPVlQoCshtLtNsEmk1/s2048/image_6483441-2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhxXPQF6FTFV_GcMAGKQyFG8c_rNLpA11DcUjMmIvMhAR1d-aUH4kWC8VnpE8F7D8IiyW3w3OlunKtdjV_QiA-1ejHoX4bmZP964btbqIbsjPUjZkQC2q-8pyIAbaPVlQoCshtLtNsEmk1/s320/image_6483441-2.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div>The <i>general advice is to go left whenever everyone else goes right after entering</i>. That was our plan, but then we saw the big playground to the right, and it was all over! There is a big animatronic tree at the Grandfather Tree playground, but Evie just thought it was interesting, and wasn't scared. The Little Dreamers toddler play area was fun too. <p></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi34tsETDhIiONLlSVrhjAxJnQhHbFTltUe4uutN9CgQpXof-QnV-hoLxkIbVCfn7fKneKUv0E1Ohe4OtkVsfsbOfnFkXLJz7hWLnr8mc41xR9mrjkOQC-h19oMBQXCgNpbfFM_Vo2ZBh9G/s2048/image_6483441.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi34tsETDhIiONLlSVrhjAxJnQhHbFTltUe4uutN9CgQpXof-QnV-hoLxkIbVCfn7fKneKUv0E1Ohe4OtkVsfsbOfnFkXLJz7hWLnr8mc41xR9mrjkOQC-h19oMBQXCgNpbfFM_Vo2ZBh9G/s320/image_6483441.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div>After saying hi to the animals, we then entered the castle gate, and saw all of the rides. The pumpkin coach ride was tempting, but there was too much time in between coaches arriving at the stop, so we moved on. <p></p><p>Adults have warned us about the tea cup ride, so we stayed away from that one! The swan boats are not running this year, so we went to the Buccaneer Pirate Ship play area. </p><p>OUR FAVORITE PLAYGROUND</p><p>The Pirate-themed playground was our favorite, since there was a pirate ship slide, some cannons to squirt water with, and a pretend ship to climb. Evie had just filmed a <a href="https://www.youtube.com/watch?v=YPAe49wex_k" target="_blank">Sea Shanty with Mommy</a>, so she has been really into pirates! </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjqn07CxYQgX3sLtwZvjtRzBXkjArVyr5hA_v9n6ALLLPe_89KL-PxyFkM_YSv1L_JVfy_kU5ZUlBWGH3VQrMt3qcgvXSZaAavlITegcHNNywtFOp3kP20STbgrOmaDxgAVYJd2NAMaC1E/s2048/image_6483441-3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjqn07CxYQgX3sLtwZvjtRzBXkjArVyr5hA_v9n6ALLLPe_89KL-PxyFkM_YSv1L_JVfy_kU5ZUlBWGH3VQrMt3qcgvXSZaAavlITegcHNNywtFOp3kP20STbgrOmaDxgAVYJd2NAMaC1E/s320/image_6483441-3.JPG" /></a></div>ROLLER COASTER RIDE!<p></p><p>We used our M.A.P. to skip the line at the roller coaster, and the wait was much shorter through the exit gate. Evie and Daddy sat in the front seat, and Mommy sat behind them so I could scream! The ride was pretty short, but enough of a jarring and thrilling experience that Evie needed a nap afterwards. She didn't seem to love or hate the roller coaster ride, but it seemed like it was definitely a stimulating experience for her. </p><p>BRING YOUR LUNCH, OR YOU WILL BE SAD!</p><p>Having been warned by our local Down Syndrome community to pack a lunch, we packed some $5 wings, fruit salad, chips, and drink in thermal bag. We lunched away as we watched people stand in long lines to buy their food, while their children cried that they were hungry. Thanks for the tip, friends! </p><p>SENSORY TIPS</p><p>On the<a href="https://www.storylandnh.com/sensoryfriendlyinfo" target="_blank"> sensory tips brochure from Storyland,</a> they list the picnic tables behind Pablano Cantina as a quiet place to eat. <i>While it is shady and a little removed from the crowds, it is not quiet, because you can hear the announcer on the carousel ask everyone to yell "Giddyup" every few minutes. </i>They also list a <i>Calming Room, which was essentially a room with four walls and some seating and air conditioning.</i> We didn't need to use this, but glad to know it was there. There is a <i>storage area for coolers </i>as well, but our stroller had everything we needed. Something I greatly wished was that Storyland could have larger diaper changing tables, and not just in baby areas. One day, Evie will be too tall for the baby changing tables, and we would have a hard time finding a private and comfortable place to change her, if she is not yet fully potty-trained. But I hope she will be next time we go! </p><p>Afterwards, we also rested at the World Pavilion while Evie took an almost two hour nap in her stroller! The indoor food places like Food Fair were still closed, so the table area outside easily had available seating. We enjoyed watching the Egyptian-themed splash battle, where kids and adults rode in Egyptian ships and squirted water at each other. <i>The Hawaiian ice stand was a welcome treat when it got warmer. </i></p><p>Evie didn't seem excited about the Flying Fish or Turtle Twirl, but she seemed to tolerate the Train ride around the park. This is a good way to get to other parts of the park, or just to get an overview of what is available. </p><p>Right next to the Oceans of Fun Train stop is an ocean play area. It's a great place to cool off too. We skipped the fast Bamboo Chutes and the Raft Ride--those seemed more like big kid rides. The antique cars would have been fun, but Evie just wanted to go back to the Grandfather Tree play area, so we enjoyed the playground one more time, while Daddy stood line to buy Mommy some <i>fried dough (highly recommend!). </i></p><p>Overall, we spent 6 hours there, and it was such a fun day! For a kid who doesn't like loud noises or crowds of people, Evie did great. And do you know what my little stinker asked me later that evening? "Mama, want to go to park today." My response? "Evie, you went to about FIVE playgrounds today!" And then I went to go rest my tired feet. </p><p>Next year, we may consider Santa's Village, which is nearby and supposed to be lots of fun too! </p><p>Here's a video of our time at Storyland! Please Like and Subscribe to our Youtube channel "Evie the Extraordinary" so that we can continue to increase representation of kids with Down Syndrome on kids' media. We would appreciate your sharing and spreading the word! </p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="398" src="https://www.youtube.com/embed/SKkQeFvWBHo" width="480" youtube-src-id="SKkQeFvWBHo"></iframe></div><br /><p><br /></p><p><br /></p>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com2tag:blogger.com,1999:blog-852306677070926015.post-44768504257276259562021-04-18T13:53:00.000-04:002021-04-18T13:53:04.359-04:00Jumping and Friendship Crafts with Evie<iframe frameborder="0" height="270" src="https://youtube.com/embed/Bj2mKH4NlEg" style="background-image: url(https://i.ytimg.com/vi/Bj2mKH4NlEg/hqdefault.jpg);" width="480"></iframe><div>This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about making new friends, because I was just so impressed with how Qole gave Evie the space she needed to feel comfortable enough to say yes to getting on the trampoline. </div><div><br /></div><div>And then as we were making a paper craft about friendship, and we were pulling out different pieces of color, I was struck with how it became a teaching moment for my daughter that people of all colors can hold hands and can look out for each other. May it be so. The world needs it now more than ever. </div>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com1tag:blogger.com,1999:blog-852306677070926015.post-20172601805979803032021-03-19T22:15:00.000-04:002021-03-19T22:15:21.296-04:00Evie's Double Whammy and Why I'm Speaking Up About Anti-Asian Racism<p><b>My first memory of really recognizing I was different</b> was in 4th grade in a mostly white town. I was riding a different school bus with my friend to go to her house. A boy (whose name I will always remember) started chanting "Ching chong, wah wah..." over and over again throughout the bus ride. I ignored him.<b> I had no power on this bus</b>. I was stunned that a boy I didn't know would tease me like that. I went home and told my parents, and my dad joked about it, saying next time I should tell him he speaks "Gobble Gobble." We all laughed, and laughing was what I needed that night. <b>I tucked it away in my memory, but I knew that the incident had bothered me. My mom found out another time that I was being teased, and she took action and initiated what became a cultural immersion day in my elementary school. </b></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6qHCtlZ0EO5-4glGAMEUGaYEbz-tbXpAQw9fLvi_DvKovOBSWxkZ-kQntAlhSDu3cSTv07E2YL46Jwub9czzUNOkh6SOrTFtEw3-NuOiafdlA463JBZ8HWa8pypmyfy_mcxx-NotLTdxb/s961/image_6483441-2.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="961" data-original-width="528" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6qHCtlZ0EO5-4glGAMEUGaYEbz-tbXpAQw9fLvi_DvKovOBSWxkZ-kQntAlhSDu3cSTv07E2YL46Jwub9czzUNOkh6SOrTFtEw3-NuOiafdlA463JBZ8HWa8pypmyfy_mcxx-NotLTdxb/s320/image_6483441-2.JPG" style="height: auto; max-height: 80%; max-width: 80%; width: auto;"></a></div><p>In middle school, a girl in my class made sure I understood I didn't belong at her table, motioning to all the other girls at the table and announcing that only those she named belonged there. She named everyone but me. Another girl told my best friend that she couldn't be friends with her if my friend stayed friends with me. My wonderful best friend chose me. I wondered for a long time what I had done wrong to make this girl dislike me so much. I saw those as annoying middle school trials back then, but looking back, I was already experiencing exclusion because I looked different. One could say I don't know that, but <b>after experiencing a pattern, you just know. </b></p><p></p><p>In high school, we moved to a new town, and my first day in math class, a boy patted the empty desk next to him and said, <b>"Sit here, you look smart."</b> I smiled, but I felt uncomfortable with his assumption. And I got a B+, not an A (so there!!). I was a well-behaved, responsible girl who played the violin and piano, and got good grades--mostly. I joined the school chorus, and found a community of friends who embraced me and made me feel like I belonged. </p><p>After going to college, there were other Asians, and<b> I was suddenly one of many</b>. I had actually developed a disdain for Asian-ness somehow, and went through a journey of accepting my Taiwanese-American identity and making Asian friends. I didn't completely fit with my Taiwanese extended family (often being introduced as an "ABC (American-Born Chinese)", but I didn't completely fit with my white friends either. At college, I met other Asian-Americans who had similar backgrounds, and I felt like I could be comfortable in my own skin.* </p><p>Recently, I shared with some people about being the only one in an airplane exit row who was asked if I spoke English. Instead of listening to me and really hearing what I was saying, a non-Asian person in the conversation chose to question my experience about whether it was really a microaggression. They started talking about airplane protocols and basically minimizing and second-guessing my experience. They weren't listening. I was the only one who looked Asian in that row. There could have been European travelers in that row who didn't speak English. That moment passed as quickly as it occurred. But I was shocked by how angry it made me. <b>That is the general experience of Asians in America--minimization and invisibility. We are taught to keep our heads down, don't make waves, and just work hard, so that we don't stick out. </b>We justify microaggressions against us in our heads, so that we don't need to feel bad about them. </p><p>Did I say anything in any of these situations? No. I was usually taken aback and speechless, and wanted to keep the peace.<b> But no more, especially as our most helpless, the elderly, are being targeted</b> across America, with violent acts against Asians 150% higher in incidence than previous years. Asians of all ages in their daily lives are being harassed more than ever before, in broad daylight. It doesn't matter what type of Asian, or whether we were born in America. It is a pervasive problem that has touched every Asian in some way. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUgn5JM6-eW0-MTLiPYpcYwayX2haxc7eAr1q9KJjjDTkKJ62ykyAa5VvoHo-BaNKCVHPQNaoyWxQSYFRZ68KUSoeBEvTa-nTXEulWMGUHN-VgfdnCgMG8SMgr4h05Otbn-bl1enZGFdlv/s2048/image_6483441-3.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUgn5JM6-eW0-MTLiPYpcYwayX2haxc7eAr1q9KJjjDTkKJ62ykyAa5VvoHo-BaNKCVHPQNaoyWxQSYFRZ68KUSoeBEvTa-nTXEulWMGUHN-VgfdnCgMG8SMgr4h05Otbn-bl1enZGFdlv/s320/image_6483441-3.JPG" style="height: auto; max-height: 80%; max-width: 80%; width: auto;"></a></div><div class="separator" style="clear: both; text-align: center;"><br></div><b>And now I have a daughter who is Asian and who has noticeable disabilities. That could be a double whammy. </b>People immediately notice that she has Down Syndrome. She is different to them. <div><br></div><div>But <b>I am teaching her that she is worthy, and I am teaching the world that she is worthy </b>(cue our <a href="https://www.youtube.com/channel/UC8Utzv76CsDa20PsZqgR6fg" target="_blank">Youtube channel</a>).<b> </b>She is a star. She is a child of God. She is not invisible.<b> And when someone wrongs her, she will have the voice to speak up and say, </b></div><div><b><br></b></div><div><b>"Hey! That is not how I want to be treated. I deserve better." </b><p></p><p><b>She is not weak. She is the bravest child I know. She has more joy in her pinky than most people have altogether. While she is learning, I will speak up for her. </b></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo961ir2bqV5j4849QdkyhNW2sv1J4vWx1PVw7o97rMAZWMDX8Z17EgbeLT1qnuO82E4mbor7hl7XWiMTPEisP89egVgnQ5_lDFM6Z1P0iqhAxUJL2ZFd26H5DoZzV3C8CTiidK1VH37Bi/s2048/image_6483441-4.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo961ir2bqV5j4849QdkyhNW2sv1J4vWx1PVw7o97rMAZWMDX8Z17EgbeLT1qnuO82E4mbor7hl7XWiMTPEisP89egVgnQ5_lDFM6Z1P0iqhAxUJL2ZFd26H5DoZzV3C8CTiidK1VH37Bi/s320/image_6483441-4.JPG" style="height: auto; max-height: 80%; max-width: 80%; width: auto;"></a></div><div class="separator" style="clear: both; text-align: center;"><br></div>And so I have been telling my story,<b> in support of my Asian community, and in support of all human beings who are marginalized, minimized and underestimated</b>. Just like Evie, <b>we are all more alike than different</b>. </div><div><br></div><div>Let's work together to appreciate our differences. Our children's stories can be different. And <b>to my non-Asian friends who want to join us in this work, please speak up and amplify our voices with us.** </b>You can truly make a difference, just by saying, "Did you hear what Evie said? She has a great idea" or "I think you meant to respond another way, so that you're acknowledging what Evie is saying about her feelings." Teach your children to celebrate differences.*** </div><div><br></div><div>I am thankful for our friends (both Asian and not Asian) who have checked in on us or have already spoken up to say that this work to combat racism is important and that we are seen and valued. It means we have hope for a better and safer world. </div><div><br></div><div>Be Well,</div><div>Evie's Mommy</div><div>-------------</div><div><br></div><div><br><p>*One great free resource for Bystander Intervention Training: <a href="https://www.ihollaback.org/bystanderintervention/">https://www.ihollaback.org/bystanderintervention/</a></p><p>**Many of my closest friends have not been Asian, but they celebrate my heritage and everything else that makes me who I am. I am thankful for their friendship and hope Evie has such wonderful friends too!</p><p>***A great book about celebrating differences is "You Are Enough" by Margaret O'Hair, and inspired by Sofia Sanchez, a little girl with Down Syndrome. </p></div><a href="https://amzn.to/3vC8OjA" target="_blank">Amazon link: You Are Enough</a><br>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-5633781369051026032021-03-07T19:10:00.004-05:002021-03-07T19:10:25.279-05:00Evie Plays with Potato HeadWe are up to 121 subscribers in 2 months! Please click Like and also Subscribe so that we can reach the 1000 subscriber requirement to be on Kids YouTube (right now we are on regular YouTube, in a vast sea of home videos. :) We would love to have representation of kids with Down Syndrome on YouTube, so that other kids see that differences can be special! <div><br /></div><div><iframe frameborder="0" height="270" src="https://youtube.com/embed/A6yRL1ILgaY" width="480"></iframe></div><div><br /></div><div>Thanks for subscribing and spreading the word! </div>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-47178001686616229952021-01-31T11:22:00.003-05:002021-01-31T11:22:48.352-05:00Evie's new movie channel on YouTube!<p>During the pandemic, Evie and Mommy have ventured into the art of making videos. Once we became better at it, we started a <a href="https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=2ahUKEwjv3u3ZycbuAhWR1VkKHaJaAq4QFjAAegQIARAC&url=https%3A%2F%2Fwww.youtube.com%2Fuser%2Famyohpntz&usg=AOvVaw2_qhMSSKD1aWZOwok-KnKm" target="_blank">Kids' Youtube channel, called Evie the Extraordinary</a>! </p><p>My goal in these videos is to show our audience that Evie is more alike other kids than different. Sure, her expressive verbal skills are slower to develop, but her receptive skills are all very much in tune, and it's so fun to show everyone how smart she is! I mean, the kid taught herself to read! </p><p>Evie's favorite movies we've made so far are the Ice Cream truck episode and the Juice making episode. Today, we released a movie about alphabet foam tiles, because that's Evie's current favorite toy! <a href="https://youtu.be/-axg_FGjwz4">https://youtu.be/-axg_FGjwz4</a></p><p>We'd love it if you'd like our videos and click to subscribe! When we reach a certain number of subscribers and watched hours, then we can be included in Kids Youtube. Think about how many kids will be able to see how Down Syndrome is just something that makes Evie unique, but she is more similar to them than different! </p><div class="separator" style="clear: both; text-align: center;"><a href="https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=2ahUKEwjv3u3ZycbuAhWR1VkKHaJaAq4QFjAAegQIARAC&url=https%3A%2F%2Fwww.youtube.com%2Fuser%2Famyohpntz&usg=AOvVaw2_qhMSSKD1aWZOwok-KnKm" imageanchor="1" style="margin-left: 1em; margin-right: 1em;" target="_blank"><img border="0" data-original-height="1129" data-original-width="2048" height="252" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD75ve8FndDImU8SAI4w_CmFf3aTxECi0CMhm92NtDnr_WtnlNrBb3GPk9DCPKGWFqrs0OJoaqSmE7L_Nah14vz9H82bVGKKZQ5ued0PzldE7t6Kwi9iK5VmVFLlOcRJSHv1qLiXMppq3o/w457-h252/Screen+Shot+2021-01-31+at+11.21.06+AM.png" width="457" /></a></div><br /><p>Thanks for watching our show! </p><p><br /></p>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-80064463325593296902020-12-24T20:40:00.055-05:002020-12-26T11:28:37.515-05:00Evie's Last Step--A Tubie Journey<p>Hi friends,</p><p>Evie is 6 years old and has had a feeding tube all her life. Yesterday was the first day ever that she had no formula put through her g-tube. </p><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho8Vfl5JVzIyEZLn5MpUmWNAStoTsXdjrE7v-StJGgQLnUYqzE76bDviroqcEQh7tzGsHfySYpcl0eBRcEyDdFNOBJvqXpfxGRqCU-kZPkDl6R13IuJnPr1Otj9-6AIZm14JVInC6hRGL6/s2048/image_6483441-2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1415" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho8Vfl5JVzIyEZLn5MpUmWNAStoTsXdjrE7v-StJGgQLnUYqzE76bDviroqcEQh7tzGsHfySYpcl0eBRcEyDdFNOBJvqXpfxGRqCU-kZPkDl6R13IuJnPr1Otj9-6AIZm14JVInC6hRGL6/s320/image_6483441-2.JPG" /></a></div><br /><br /><p>At 5 weeks old, we broke out of the NICU (finally!) after getting a <a href="http://www.evietheextraordinary.com/2015/02/g-tubes-whole-new-world.html" target="_blank">g-tube placed in her stomach</a> so that she could gain weight at home. We started from using an overnight feeding pump and feeds every 3 hours on Pediasure formula, and praying she wouldn't spit up or set off her pump alarm overnight. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8TwUqIqMFSSi0N3354t4VCczRhzHaL_bcnoc_i_0iHSzftN9XLgfEUhq06synBt51NzN3Ol7nwD4ZkxvL32LoQUgPKQUKbA4uPpsPsQxykJnY-028hf5bRLpyJR7YLZToTUwFgoP18qIM/s2048/image_6483441.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8TwUqIqMFSSi0N3354t4VCczRhzHaL_bcnoc_i_0iHSzftN9XLgfEUhq06synBt51NzN3Ol7nwD4ZkxvL32LoQUgPKQUKbA4uPpsPsQxykJnY-028hf5bRLpyJR7YLZToTUwFgoP18qIM/s320/image_6483441.JPG" /></a></div><p></p><p>We then figured out how to space out the feeds to transition from a NICU schedule to a real-life schedule. </p><p></p>We then dealt with feeding aversion, with Evie turning away or crying when offered the bottle. As she got older, she accepted a little food by mouth, but not enough to sustain her. <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitTOxhkuK9v7_qBUzJDvwmie5DSqavj3Yj00BzZAl45Rmduuovzmpj8JLl5q1ycKv2dVnHYOzOha8wqbBrbifLiDeChSDaZSlkOWv4nSt19kwl8ZS9TIxTLvHB7F_4aC-eEF8XUr-NzHWP/s2048/image_6483441-5.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitTOxhkuK9v7_qBUzJDvwmie5DSqavj3Yj00BzZAl45Rmduuovzmpj8JLl5q1ycKv2dVnHYOzOha8wqbBrbifLiDeChSDaZSlkOWv4nSt19kwl8ZS9TIxTLvHB7F_4aC-eEF8XUr-NzHWP/s320/image_6483441-5.JPG" /></a></div><p></p><p>I furiously searched Facebook groups and read articles, trying to figure out how to help her leave the tubie life. </p><p>We switched from <a href="http://www.evietheextraordinary.com/2019/01/evies-food-world-just-changed.html" target="_blank">Pediasure to Real Food Blends</a> to let her body get used to less milkshakes and more real food. This was a huge step for her. I think that was the scariest step--completely changing what was going into her body. But it was worth it--her development took off after that, both cognitively and physically. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDAfhAkgqb9WtC46nShaa-MMF_yu6LqG1QeGkFgdGcqE1gudJWYY5t2MQwNTVbz8tTVbLGbqiTaNjkgjWO0MPIucOulNv3KAyRt9ay3QjuHwTFBG13jEZSt-yov5QIyeBgv9A0gqKq_rPo/s2048/image_6483441-4.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDAfhAkgqb9WtC46nShaa-MMF_yu6LqG1QeGkFgdGcqE1gudJWYY5t2MQwNTVbz8tTVbLGbqiTaNjkgjWO0MPIucOulNv3KAyRt9ay3QjuHwTFBG13jEZSt-yov5QIyeBgv9A0gqKq_rPo/s320/image_6483441-4.JPG" /></a></div><div><br /></div>We switched to blending her food and using a syringe to push food in through her feeding tube, and said goodbye to the pump. She had years of feeding therapy, making baby steps in this marathon. <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH42Bk9slFXFcK2hreTXeT6HTdOhDiC-CYDZjo8978ZlUNjPl_qGIEckydgAXkuPLyhE12JrEH9LQ03Zhr2lDxE5gEegFlHur4FUpFy2GMv9flfzANHLx2YR4JjCmBE27bwrSovmYMJXTI/s2048/image_6483441-7.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH42Bk9slFXFcK2hreTXeT6HTdOhDiC-CYDZjo8978ZlUNjPl_qGIEckydgAXkuPLyhE12JrEH9LQ03Zhr2lDxE5gEegFlHur4FUpFy2GMv9flfzANHLx2YR4JjCmBE27bwrSovmYMJXTI/s320/image_6483441-7.JPG" /></a></div><p></p><p>After years of feeding therapy, and patience for her own timeline, she has been eating 3 meals and 2 snacks a day by mouth, and just getting supplemental formula. Everyone agrees she is close. </p><p>With a heads up to our feeding team, and unwavering support from our feeding therapist, we reached out to the Growing Independent Eaters (GIE) team online, and they have helped us with a plan to take the final step. They affirmed our feeling that Evie is SO close to eating, and just needs the last push so that she will recognize hunger cues and own her independent eating. (Side note--before GIE started, the only other programs available were long hospital stays in other parts of the country, or a famous program in Germany for several weeks, for thousands and thousands of dollars.)</p><p>As soon as school let out for the holidays, we had agreed on a schedule and a plan. When Evie says "All Done," we won't push her, and will focus on the fun of eating and spending time with us at the table. We will point out how yummy her apple chicken blend and her cranberry sauce is, and present options. And when she insists she is done, we will steel ourselves to say ok, and trust that she will eat like any other young person and have peaks and valleys of appetite. </p><p>We won't see any changes (except maybe crankiness?) for 7-10 days. Step 1 is no formula and increase water intake, and offer food every 2-3 hours. Step 2 is no tube at all, except to maintain hydration and reduce constipation. </p><p>For you technical parents out there, her current tube schedule has been in total:</p><p></p><ul style="text-align: left;"><li>5 oz Real Food blends</li><li>1-2 ounces Pediasure Grow and Gain</li><li>10 oz water</li></ul><div><u>Our new Step 1 schedule is:</u></div><div>Breakfast</div><div>Morning Snack, then 60 ml water</div><div>Lunch</div><div>Afternoon snack, then 60 ml water</div><div>Dinner, then 90 ml water</div><div>Before bedtime snack</div><div>Bedtime, 90 ml water</div><p></p><p>I feel like we are on a precipice of a good thing, but the next few weeks will be a journey. Here are some FAQ's: </p><p><b>How can you help? </b></p><p>You can ask how we are feeling about the journey, what Evie's favorite food or snack is, or any other upbeat question you can think of. Unhelpful questions would be about whether she has lost weight or how much is she eating. Telling her to eat all of her food is the opposite of what we are supposed to do right now. We are supposed to focus on the emotional part of food for her, to help her feel safe and willing to try other parts of eating. You can help us focus on the fun as well, by asking her what her favorite ice cream flavors are, or what's her favorite snack/dinner food. </p><p><b>How long will this take? </b></p><p>We don't know. It's kind of up to Evie. But Step 1 is likely going to be 1-2 months, at best guess. And then Step 2 also depends on how she does through cold season and whether she is drinking by mouth enough to stay hydrated (this is going to be a struggle). It could be another year until she has the feeding tube removed. Usually the doctors like to make sure that it's a sustainable wean. Wouldn't that be a great Christmas present for 2021?</p><p><b>How did the last 2 days go?</b></p><p>Day 1 went smoothly! Just a little cranky in the morning, and then was more enthusiastic about snack time. Day 2 was interesting--she kept asking for more breakfast and has been really happy about snack time. I'm getting good at blending peanut butter chocolate smoothies! </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAq-ebHFkElj_ii3rEE6A-dFzm7VL9ao9hh81yaStgduaewyaRffPzjGkxylfHkyWoLut5LwqoeyhpDyK9FH-NHNBqOR_V_S7Lq0rSd3h6NGyNnBOtNTjpKor6CMJrFbDnJt_oCFpeTkp4/s2048/image_6483441-3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1539" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAq-ebHFkElj_ii3rEE6A-dFzm7VL9ao9hh81yaStgduaewyaRffPzjGkxylfHkyWoLut5LwqoeyhpDyK9FH-NHNBqOR_V_S7Lq0rSd3h6NGyNnBOtNTjpKor6CMJrFbDnJt_oCFpeTkp4/s320/image_6483441-3.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div>Thanks for your encouragement and prayers for our journey. Cheers for Evie are welcome! (Just don't tell her to eat all her food. :P She will eventually, and I can't wait to take her to McDonalds for whatever she wants someday!)<p></p><p><br /></p><p><br /></p>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-56283293027814507202020-09-11T22:12:00.000-04:002020-09-11T22:12:54.044-04:00Evie's Favorite Masks<p> Hi all! This is Evie, and I want to share with you about my favorite masks. Mommy tried a few different types, and this is the one that I don't whip off right away. Why is this type my favorite? I think because the ear loops fit me well and don't make my glasses fall off. Mommy likes that they are made of cotton muslin and the ear loops are adjustable with a plastic adjuster. </p><p><br></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0jsoHHMHZ8GScRaq6-HTPxaU4bWaXXJdf7_oz9Bg5-y_FNpbKOsKOizrQrcYcrjkKzebbKMikFFhKPvh-olgVgQuYliyEpUucxfVxi_mYcGHO3kMpJRIuru2tTJiHQyrEDan6Ohtfnj2x/s2048/IMG_0782.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1539" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0jsoHHMHZ8GScRaq6-HTPxaU4bWaXXJdf7_oz9Bg5-y_FNpbKOsKOizrQrcYcrjkKzebbKMikFFhKPvh-olgVgQuYliyEpUucxfVxi_mYcGHO3kMpJRIuru2tTJiHQyrEDan6Ohtfnj2x/s320/IMG_0782.jpeg" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"></a></div><div><br></div>Mommy asked the Etsy shop owner if she would share a promo code with me and my friends, and she said yes! If you search for BeWellGroup in Etsy, you can use the promo code "EVIE20" and get 20% off!! Mommy has bought at least 6 of these for me in preparation for school. She likes the adult version too, because they have nose wires and filter pockets. Hope you enjoy then as much as we do! (Mommy's note: This is an honest review and we received nothing for posting this. We honestly really love these masks and wanted to share them with you!)<div><br></div><div>I start school on Monday with an short morning in my new classroom. I am excited! <br><p><br></p></div>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com6tag:blogger.com,1999:blog-852306677070926015.post-37697555800031799002020-09-06T23:07:00.090-04:002020-09-06T23:33:56.673-04:00Quarantining with EvieQuarantining with a preschooler (soon to be kindergartner) is both wonderful and terrible. Mostly wonderful. But sometimes I feel like I'm doing a terrible job as a mom and as a sudden teacher. And then other times I feel like I deserve an award for working my full-time job and still teaching her things. I oscillate between these feelings as fast as I find snacks throughout the day, because why not? <div>
<br /><u><b>
Here are some things Evie has learned during this time of quarantine:</b></u><br />
1. How to say I Love You. As of August, she now says, "I love you SOOOOO much!"<br />
2. How to dance the Robot Cha Cha, courtesy of her music teacher sending along videos. Robot Cha Cha is a made-up dance, but she actually dances to <a href="https://youtu.be/YKhi9ITkRgA" target="_blank">Apache, by the Sugar Hill Gang</a>. Every single night. <br />
3. How to tell Daddy to dance the Robot Cha Cha, and make us all giggle. Now Evie just points at her Dada and says, "Dada Dance." And then he has to dance. <br />
4. How to read the words "God," "love," "pray," "toe" as of April, and now as of September, I can truly say she can read most words in a board book. She doesn't even let me read the words for her Bedtime Prayer book now. She has to read it to ME. She is very proud of herself. <div>5. Leaving the house is a source of joy when you stop taking it for granted. We have gone to Russell Orchards, Cape Cod, Horn Pond, and countless trips to the playground once it opened. It's been so helpful to leave the house. </div><div><div style="text-align: center;"><img border="0" data-original-height="2048" data-original-width="1147" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ1guJhp9V0UA1Ze-me7UEw7yJqT_blcdwezCWnFlOAt5jE4JsArqa96skX_lqvd8M3wOcecRqrRStNpyLuord7AdXwDPfKxccGp8tom-KLDpdDcY-z_Lx71Z6_Xuk3TThUPQHmCVI_-1d/w179-h320/IMG_0792.jpeg" title="Hanging out at Russell Orchards" width="179" /></div>6. To ask for the book "<a href="https://amzn.to/3jNHmIQ" target="_blank">Peck Peck Peck</a>," she can hit the button for "woodpecker" on her Nova Chat (if you don't know this book, it is one of our favorites).<br />7. To cook something in the microwave for 1 minute. Don't worry, she's not strong enough yet to open the microwave door herself. <br />8. That her reflection is visible in the oven door and the microwave door when she wants to look at herself...all the time. <br />9. Simon Says MUST be put to song, and Mommy must sing it with the ukulele every time, and dance around until she is panting excessively because she is now completely out of shape.<br />10. How to coast down the driveway on her scooter without hitting the bushes.<br />
11. How to pretend to count to 10 during hide and seek while totally peeking to see where Mommy or Daddy went to hide. She refuses to hide. She only seeks. <br />
12. How to be adventurous in tasting foods like broccoli, french fries, ribs, cheerios, and noodles. Her newest favorite is cranberry sauce--she is truly my daughter. <div>13. How to play T ball indoors and tag kitchen appliances as bases. I blame this Youtube kid: <a href="https://youtu.be/AZUAh3iA75Y" target="_blank">https://youtu.be/AZUAh3iA75Y</a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBgGyXZ-V3f-2POUCL4A60nk0iqNKrsJu_Zb53eClQ3NBZBdH3UHu-ALVBZ8B0E9Gpr0J3Xh7nKFbXUKE08oaT6SNc223Jw_daGVGg69FumdCMfT4gnb8pPi0RYuprHZACc6E2XsFJdx34/s2046/IMG_0791.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2046" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBgGyXZ-V3f-2POUCL4A60nk0iqNKrsJu_Zb53eClQ3NBZBdH3UHu-ALVBZ8B0E9Gpr0J3Xh7nKFbXUKE08oaT6SNc223Jw_daGVGg69FumdCMfT4gnb8pPi0RYuprHZACc6E2XsFJdx34/s320/IMG_0791.jpeg" /></a></div><br />14. Evie's vocal language has really taken off in the last 6 months. She now independently says things that surprise me, like "Mama hug Evie" and "Purple Stars (for which pajamas she wants to wear)." She spontaneously bursts into song, and sometimes gives a monologue that I don't completely understand. Her favorite pastime is naming all of her plastic vegetables. It's going to be a good rest of the year as she expresses herself in so many more ways! <br /><div><br />
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Things I have learned during this time of quarantine:</u></b><br />
1. How to transition quickly from a Zoom call with preschoolers to a Zoom call with colleagues. It should be interesting this fall with hybrid/remote learning!<br />
2. How it is essential to have leggings for each day of the week.<br />
3. How much I love and miss the cameraderie with my colleagues at work.<br />
4. The many ways of spatial engineering necessary to fit food in my freezer.<br />
5. The many items I can make with overripe bananas.<br />
6. How short Evie's attention span is after I took the trouble to set up a game or something to cook together. (We are working on this!)<br />
7. How much I appreciate my husband, who does his fair share of hide and seek, feeding tube schedules, bath time, feeding meals, and picking up whatever takeout I am craving.<br />
8. That the Netflix show Kim's Convenience is hilarious. And how much I enjoyed Crash Landing On You on Netflix, which jumpstarted my new hobby of watching Korean dramas. <br />
9. That good ergonomics are essential in keeping me feeling like an 80-year old woman after working from home. I finally gave in 5 months later and got a <a href="https://amzn.to/3hayPhn" target="_blank">new desk chair! </a> </div><div>10. Seeing patients during a pandemic makes you work faster in the exam room, but has also made me ask myself how I can connect with people in the short time I have with them, and despite wearing a mask and goggles. <br />
10. That we are so immensely blessed to have a ray of sunshine named Evie who makes quarantining not so bad, when we are having dance parties and laughing over the little things.</div><div><br /></div><div style="text-align: center;"><img border="0" data-original-height="2046" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8b7YsYgHO-Zo45gOyMLjKNYqMBVP7awmN2F7UcCCFSKRzJAughaEpoNcG_ecvpI0xwyDdIIWiJFHv861H-aXcrIadJ31_yrsnaHOQNlb4voeu6CJ2wenFn8eUuhSpjlaun2UiT0zgCNdz/s320/IMG_0790.jpeg" /></div></div></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: left;">And that brings us to September, my friends. Evie starts kindergarten amidst a pandemic, but she is going to be ok. She keeps a mask on pretty well, and her excitement for learning and her desire to see new places will carry her through the transition. </div><div style="text-align: left;"><br /></div><div style="text-align: left;">If you're the praying type, we could use prayer for the perfect 1:1 aide (ESP) for Evie. Her wonderful aide for preschool is not continuing with her to kindergarten, and this is another opportunity for God to provide yet another wonderful person in Evie's life. We also are transitioning to full-day school, which is a first. This means eating lunch by mouth in school. With the delicate balance between her need to eat enough to gain weight, and the potential distractions at school, this will likely be a key point of transition. They are making accommodations for her, but I'm still concerned, especially as we continue to wean her off the feeding tube. Thanks for your prayers and positive thoughts!</div>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-52854695887668603142020-08-07T20:31:00.008-04:002020-08-07T20:31:56.877-04:00How to prepare your child to sleep like a mummy (for a sleep study)<p> Among the many things that the pandemic shut down was Evie's first sleep study. She's a little behind in getting this done, as most kids with Down Syndrome have it done sooner, but since she didn't snore or have other symptoms, we weren't in a rush. When we finally had it scheduled, it was canceled early in the pandemic. Now the new date is finally around the corner, and it caught us off guard! </p><p>One of the resources I have come to really appreciate is the<a href="http://www.childrenshospital.org/patient-resources/child-life-specialists/preparing-your-child-and-family-for-a-visit/my-hospital-story" target="_blank"> Social Stories site on the Boston Children's Hospital website</a>. If your child is due for a procedure at the hospital, it's worth checking out. </p><p>My main goal this time is for Evie to have an inkling of understanding about why the heck they are trying to put stickers on her head and wrapping her up like a mummy. I usually aim high, but I have very low expectations for her cooperation level! I will just be pleased if we don't have to do this again! </p><p>For this sleep study story, I took the provided PDF file, used Adobe to convert to Microsoft Word, and then edited in her name and pictures of her to superimpose over the 10 year old boy in the story. Putting in her picture is definitely worthwhile, as she is a sucker for anything that has her picture on it! </p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwHBMAfqc4HmLMUaSyZNXF3AFywATFPICdAzRoHk4MbXjbvqtHFDAo6u_h163WbQn9K_4kpWjaPfe6Mq6p3mAbFA1FgD8KzxAsNn1xGR5YrZejcvdMU8teuAh7GMw1mWk9ub4RKTkNOumC/s1556/Screen+Shot+2020-08-07+at+8.24.18+PM.png" imageanchor="1" style="display: block; padding: 1em 0px;"><img border="0" data-original-height="1128" data-original-width="1556" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwHBMAfqc4HmLMUaSyZNXF3AFywATFPICdAzRoHk4MbXjbvqtHFDAo6u_h163WbQn9K_4kpWjaPfe6Mq6p3mAbFA1FgD8KzxAsNn1xGR5YrZejcvdMU8teuAh7GMw1mWk9ub4RKTkNOumC/s640/Screen+Shot+2020-08-07+at+8.24.18+PM.png" width="640" /></a><br />A big thank you to the parents who have gone before us. So far, we've learned that my husband isn't getting any sleep that night, as he has graciously agreed to volunteer as tribute. Best dad ever! Stay tuned for the rundown on Evie's adventures in the sleep lab!</div><p><br /></p>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com1tag:blogger.com,1999:blog-852306677070926015.post-821250600925916482020-04-07T16:33:00.001-04:002020-04-07T17:10:14.468-04:00Evie's 4th surgery...and tips! Hi friends, it has been awhile. Since we last wrote, Evie had a few minor procedures that we had been "collecting" in order to justify putting her under anesthesia. <br />
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As soon as it was evident that we would be scheduling surgery, the part of my brain that stores away medical info for Evie kicked in, and was ready to unleash the many departments that wanted "in" on an anesthetized Evie, because "awake Evie" is not very cooperative for medical visits (and none of us could blame her!).<br />
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Evie's collection of minor procedures included:<br />
1. Strabismus surgery to correct her eye turn (again). For our eye nerd friends, she had bilateral muscle resection of her lateral recti and also her inferior oblique in the right eye, as well as Exam Under Anesthesia (EUA) and DCR.<br />
2. Punctal duct clearing/expanding--Evie's punctal duct anatomy is quite interesting and takes her tears on a roller coaster that goes up and then down, which means that her tears just come back out and run down her face, and then people ask me if she's sad. <br />
3. Eye Exam under anesthesia (EUA): to get a proper assessment of her glasses prescription, they will do objective testing of the retinal reflex and check her retina. Let's just say that Evie has inherited our myopic genes, and needs some myopia control.<br />
4. Cardiology: finally got an echocardiogram, because girlfriend does not like stickers that she didn't ask for.<br />
5. Cerumen cleanout: otherwise known as cleaning out her earwax. She gets in these bad cycles of failing low tones on hearing tests, cleaning out her earwax, and then passing the hearing test.<br />
6. Ear examination--they will be actually able to see inside her ears!<br />
7. G-tube surgery: There has been a lot of excess granulation tissue building up around her feeding tube port. The surgeon cleared off some of this tissue, because it had gotten so high that we had to go up a size in her g-tube button.<br />
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It is apparently a small miracle that all 4 specialists were available on a certain date, so we only had a 2-week warning that this was all happening soon. Looking back, we beat the COVID shutdown by a week, and I am so grateful.<br />
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I wanted to share some of the tips we learned this time around, in case it helps someone else.<br />
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1. Social Stories: Last time Evie had these procedures, she was 2 years old and easily forgot how traumatic it was for her. This time, she is 5 and is going to be SO angry when she wakes up from anesthesia. I read the scheduler's instructions, which listed an e-mail address for Child Life services. I e-mailed Child Life and received a <a href="http://www.childrenshospital.org/patient-resources/child-life-specialists/preparing-your-child-and-family-for-a-visit/my-hospital-story" target="_blank">link for the Day Surgery social story</a>, which I will likely edit a bit and then print out to read with Evie 2-3 days before the big day. Hopefully this will help her to understand what is happening when she goes to the hospital. <br />
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<tr><td class="tr-caption" style="text-align: center;">We practiced on a doll and read Doctor Maisy to help her prep for pre-op, but in the end she still screamed her head off during vital signs. </td></tr>
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2. Communication Device: I wanted to empower Evie to be able to communicate in the time that she is waking up and they are just alerting us that we can go to see her in the PACU. I asked Child Life if we could arrange for her to have her Nova Chat in the recovery room, and they said that they would advocate for us to do that. However, while Child Life was so nice and brought her toys in the pre-op and post-op areas, Evie really didn't want anything except Mama, so in the end she didn't need her Nova Chat.<br />
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3. Nail cutting and hair trimming: No joke, if your child with special needs is ornery when you try to cut their hair or trim their nails, you can ask the surgeon if they are willing. The ophthalmologist brought this up with us and said it was no biggie if I wanted a nail trim that day for Evie. I got a big kick out of this, but for some people it could be a lifesaver.<br />
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4. Waiting in Pre-Op: Parents, don't think that your child will be taken at a predictable time before their surgery time. Our arrival time was 11:45 am, and surgery time was 1:15. Evie got taken in at 2:15 pm. But of course I had forgotten that things run behind, and had waited to eat lunch. I ended up sneaking a candy in the bathroom so I wouldn't pass out from low blood sugar. I was trying to have solidarity with all the fasting children around me, but man, I just couldn't do it. Evie did better than I did and fasted longer than I did.<br />
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5. Recovery: This is the hardest part. Evie was so uncomfortable. She wanted to throw up when we got home, but there was nothing to throw up. We had to try small amounts of Pedialyte gradually so she could keep it down. It just broke my heart to see her so uncomfortable and sad. It was a bit like having a newborn again, with staying up all night and rocking her. Thank God she felt much better the next day.<br />
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Here we are, 3 weeks out after the surgery. Evie's eye turn is noticeably improved, although not 100%. She does still have watery eyes, but that may be from all the screen time she is getting during this COVID-work from home-homeschooling phase of our lives. All in all, she was a trooper, and we are so thankful for the care we were able to receive in person, just in the nick of time.<br />
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If you have read this whole thing, you are a true Evie fan or a fellow parent of a medical needs warrior. Much love to you.<br />
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<br />amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-39982149219016409552019-12-31T11:30:00.000-05:002020-01-06T19:52:53.468-05:00Evie turns 5!It's funny how Evie turning 5 just crept up on me, without too much fanfare. Turning 3 was a big deal because she graduated from Early Intervention support, and turning 4 was heralded with a big birthday party. This year, I wanted to give Evie a good mix of fun and celebration, but with consideration for her fear of large groups. We ended up picking one of Evie's favorite indoor playgrounds and inviting close "framily." It was overall a huge hit, except for when we all attempted to sing Jingle Bells instead of Happy Birthday (she hates happy birthday), and she freaked out. Turns out she just doesn't want attention all on her. Mama gets it now, Evie.<br>
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This past year was full of firsts:<br>
1. Walking independently (goodbye, walker!)<br>
2. Putting solid foods in her mouth without gagging or crying<br>
3. Licking an ice cream cone voluntarily and repeatedly<br>
4. Saying more words verbally<br>
5. Graduating to bigger ankle braces<br>
6. Playing dress up and interacting more with her peers<br>
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<br>7. Getting glasses (and wearing them!)<br>8. Starting to notice bathroom routines<br>9. Reading books to herself<br>
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<br>10. Reading sight words<br>
11. Using full sentences on her NOVA chat device<br>
12. First time to Disney World and Disneyland<br>
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13. And hopefully today...wish us luck...graduating to a toddler bed!<br>
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Evie celebrated her birthday on an airplane to California for Christmas, and she traveled so well. She even walked herself down the jetway. Our little girl is growing up!<br>
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Wishing everyone a wonderful 2020, full of more firsts!<br>
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<br>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com1tag:blogger.com,1999:blog-852306677070926015.post-80187627987140631062019-12-30T21:37:00.000-05:002019-12-30T21:37:51.072-05:00Telling other kids about disabilities—my conversation with a 6 year oldI had an unexpected opportunity to have a deep conversation with a 6 year old a few weeks ago. She came in while I was feeding Evie lunch in a quiet room away from a party. The chatty girl first asked what Evie was watching, and then did a double take when Evie babbled something in response to the snow she was watching.<br>
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“Why doesn’t she talk,” she asked. I braced myself and answered that her mouth muscles are not very strong, and she is still learning how to move them to talk. </div>
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“Oh. I’m sad that Evie can’t talk.” My mama heart felt grateful that she felt the same emotions as I do for Evie each day. I thanked her for wanting good things for Evie, and assured her (and myself) that one day Evie will speak only a way that others can understand. </div>
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I asked Evie something where she answered in the affirmative with sign language. I then told the girl that this is what Evie signed in order to say “yes.” Our new little friend was ecstatic when Evie signed “yes” again and she informed me that Evie meant “yes,” as if she knew it all along. </div>
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“I wish she could play with me,” she said. I answered that Evie could play with her, and that she liked to play kitchen. She asked if she could bring out the kitchen toys for Evie, and I said sure!</div>
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She lugged a big plastic box of kitchen toys over, and when she invited Evie to come play, Evie paused her show on her iPad, put it down, and went to play. They played cooperatively, mainly the girl speaking to me while I encouraged Evie to explore the kitchen toys. But it was great to see them side by side. </div>
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The girl asked how other people know what Evie is saying, and I introduced her to the Touch Chat app on the iPad. I told Evie to say something to her on the device, and Evie said “goodbye.” 😂 But the girl was fascinated and announced, “I really like this! Why doesn’t Evie use it on Sundays in Sunday Scbool?” I told her that the other kids see it as a toy, and it doesn’t get used as much unless the teacher doesn’t understand what Evie is saying. She pondered this, and I could hear the wheels turning in her head. “Well, I think this is great,” she stated.<br>
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This conversation had me thinking. Evie deserves to have a voice in Sunday School too, but the device shouldn't be a distraction. We will need to help the teachers to describe the device to the other kids as something that helps Evie talk, and that there would be a no-hands policy. Inclusion means helping everyone to participate, and my job as a parent is to empower others to help Evie to be fully at the table, voice and all. I am so thankful for the teachers who volunteer their Sunday mornings, and especially Evie’s 1:1 aide who does it out of love for Evie. She is our partner in helping Evie to participate, and I can’t wait to brainstorm with her. <br>
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Leave it to a 6 year old to share some wisdom with me. I can't wait to see what she becomes when she grows up!<br>
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amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-31017234277379456312019-12-07T14:49:00.000-05:002019-12-07T14:49:11.543-05:00Sensory Issues and Tube Feeding at Disney WorldWhen we first decided to go to Disney, I started researching how it is having a feeding tube at Disney, and how kids with sensory issues can still enjoy the "most magical place on earth."<br>
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I found information here and there on various forums, by googling "which resort has freezers," and "ice packs at Disney," and "sensory issues at Disney." I wanted to share what I learned in hopes that our experiences can help someone else.<br>
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The technical 411 for fellow tubie parents: Evie is 4 years old, has a g-tube, but eats 3 meals a day of blended foods by mouth. She gets supplemental Real Food Blends 3 times a day. We are at about 30% wean. We had gone to 50% wean, but she lost too much weight.<br>
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The technical 411 for fellow sensory parents: Evie is terrified in a closed room environment with a lot of people. She hates it when people speak on a microphone, and has almost physical pain when people start clapping and cheering. However, she does fine in a mall or a park because they are not as enclosed. <br>
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For those of you for whom sensory issues are new, the body basically has a hypersensitive or hyposensitive response to a certain stimulus such as noise or light. Here's a good article that quickly explains it:<a href="https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/sensory-processing-issues/how-to-explain-sensory-processing-issues-to-friends-and-family" target="_blank"> https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/sensory-processing-issues/how-to-explain-sensory-processing-issues-to-friends-and-family</a><br>
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Here are our tips broken down by topic:<br>
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TUBIES AND BLENDED FOODS<br>
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1. Disney is very accommodating and will try to help. Don't be afraid to ask for what you need. My #1 worry was how I was going to keep Evie's blended food cubes frozen if there wasn't a freezer in the Disney resort hotel room. I asked the Port Orleans staff for an extra fridge to turn to freezer level, and a microwave in our room (this isn't standard). They were able to make the microwave happen, but the fridge wouldn't be able to get up to freezer level, so they told us to bring our frozen food cubes and ice packs to the bellhop, with access 24/7 whenever we needed it. This was probably the most inconvenient part, because the bellhop was across a bridge and down the walkway, and I felt I should tip each bellhop when they went to the freezer for us. But still, we made it work.<br>
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2. Choosing a hotel: if you want the Disney experience, but can't do what we did in #1, I would say to stay at a DVC in a suite, or stay off-site in a suite. Having stayed at a suite (Homewood Suites) for a conference before we moved to Port Orleans, I really missed the "suite life." I had a full refrigerator/freezer and counter space to assemble Evie's food, and it was very convenient. The suites at Art of Animation and Fort Wilderness Lodge have fridges, but they were pretty pricey. However, the ambiance and the great customer service were pretty great at Disney. <br>
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3. Each time when we go on a trip, I make a list of how many <a href="http://www.evietheextraordinary.com/2019/01/evies-food-world-just-changed.html" target="_blank">blended cubes </a>we need to bring. For a 5 day trip, the list would look something like this:<br>
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Travel Day 1:<br>
Lunch for plane<br>
Formula<br>
PM: Chicken Curry (CC)<br>
Formula<br>
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Day 2:<br>
AM: French Toast (FT)<br>
Lunch: Chicken, Rice, Peas (CRP)<br>
PM: Goulash (G)<br>
Formula x 3 (60 ml + 60 ml + 120 ml)<br>
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Day 3:<br>
AM: Pumpkin pancakes (PP)<br>
Lunch: Chicken Tikka Masala (CTM)<br>
PM: CRP<br>
Formula x 3<br>
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Day 4:<br>
AM: FT<br>
Lunch: G<br>
Dinner: CC<br>
Formula x 3<br>
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Day 5:<br>
AM: PP<br>
Lunch: CRP<br>
Dinner: G on plane<br>
Formula x 3<br>
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I then have a ziploc bag for each type of meal, and count "3 2 oz cubes per meal x # of days" needed into each bag. I usually microwave the cubes in a bowl for 1 minute and then add Noosa yogurt (about 1 1/2 oz) and mix them together. Evie's favorite flavor Noosa yogurt is pumpkin.<br>
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4. Of course, the first day of Disney, I forgot to retrieve the ice packs from the bell hop before we got on the bus to Epcot! Our Disney planner had told us about Baby Centers, so we went there hoping to use their fridge. We found out that they did not have a fridge for us either. They just have changing tables and they sell various baby supplies. They sent us to First Aid, who gladly gave us plastic bags filled with ice, and this did the job. They gave us extra plastic bags too, so we could refill the bags with ice at other quick service food locations.<br>
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5. Water flushes all the time! In 90+ degree weather, we had to remember that we needed to give more water flushes than her usual routine. The heat made her quite lethargic, and she often refused sips of water.<br>
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6. We use the stroller bag from Thirty-One gifts. It travels well and keeps Evie's food pretty cold, depending on what kind of ice pack we use. They don't always sell it, but when it comes up, it's worth grabbing one.<br>
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For the plane, I loaded ice packs into this guy:<br>
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They kept our blended food cold very nicely in our travels, from leaving our house at 9 am to arriving to a freezer at 5 pm.<br>
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So is it doable for a tubie? Definitely! We just gave food in quiet places and then went about our business having fun. Food storage can take some extra planning, but definitely feasible. I did read that Disney chefs are wonderful at blending up food as needed if special requests are made, but we did not get to test that.<br>
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SENSORY ISSUES<br>
1. Rides: Evie does not like dark and noisy places. We tried the Frozen ride, the Pooh ride, the Nemo ride, and even It's A Small World. I would say that she tolerated them, but hid her face most of the time, unless a character she recognized came out and she peeked with one eye open. The Disability Access (DAS) pass really helped us avoid lines in dark and noisy areas, but I would say that she is not ready for rides. Perhaps with headphones, but her sensory issues mean she doesn't like things on her head either!<br>
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<tr><td class="tr-caption" style="text-align: center;">This ride was not as dark as the Frozen ride, but quite jerky at times. </td></tr>
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2. Shows: If the child loves certain songs, I think this is still worth trying. When we went in, I told the cast member acting as an usher that my child may not like the show and we needed an easy exit. They showed us where to sit so that we could exit easily. Luckily, Evie enjoyed "Let It Go" and was able to sit for the entire show on my lap.<br>
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<tr><td class="tr-caption" style="text-align: center;">The Frozen live show was pretty cute, and we sat near the exit just in case, but Evie enjoyed listening to the music.</td></tr>
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3. Evie did ok if she was in her stroller going through a crowd. I did bring headphones, but it just seemed too hot to wear these when it was so hot already. <br>
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4. Disability Access Pass (DAS): When you first get through the entrance, there is a Guest Relations building somewhere in the vicinity. On the first day of your Disney trip, if you go to the Guest Relations team, you can ask for a Disability Access pass. They do not want to know diagnosis or need to see a doctors' note. They want to know what kind of accommodations the person needs to be able to enjoy Disney. I told them that Evie is afraid of large crowds and noisy environments. The cast member immediately did some stuff on his iPad and scanned our Magic Bands, and that was it. Looking back, I might have also said that she needed her stroller as a refuge when standing in line. This would have gotten us a pink tag for our stroller so that we could take it into buildings, unlike everyone else who needed to use stroller parking. But we did ok without the pink tag. <br>
Resources to read: Undercover Tourist gives a<a href="https://www.undercovertourist.com/blog/disability-access-das-card/" target="_blank"> great overview of how to get a DAS. </a><br>
Disability Resource in general: <a href="https://www.undercovertourist.com/blog/category-disability-travel/" target="_blank">Great blog by Undercover Tourist</a><br>
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5. Places of Refuge: In such a busy park, it was hard to find places for Evie to take a nap for 2 hours. At Epcot, we spent 2 hours in the Baby Care Center, but later found the food court at The Land, which would have been much more comfortable for the whole family. At Magic Kingdom, we went after her nap, so didn't need a place to camp, but knowing that the Baby Care Center was there was helpful. Our friend suggested Pinocchio's Village Haus, from which you can see the It's A Small World Boats go by. Next time... At Hollywood Studios, we found the ABC Commissary (also suggested by our famous dad blogger friend Uncle Joe), and spent 2 very comfortable hours there.<br>
Orlandovacation.com offers a short list of<a href="https://www.orlandovacation.com/traveling-with-an-autistic-child-in-disney-world-quiet-places/" target="_blank"> various quieter places</a> in each park. There is an even longer list here: <a href="https://www.keytotheworldtravel.com/sensory-friendly-spaces-at-walt-disney-world/" target="_blank">https://www.keytotheworldtravel.com/sensory-friendly-spaces-at-walt-disney-world/</a>. We were ok with white noise at cafeterias, but others may need actually quiet spots to decompress.<br>
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6. Disney does a great job of helping people with autism and cognitive disabilities. They have a summary of their services here: <a href="https://disneyworld.disney.go.com/guest-services/cognitive-disabilities-services/" target="_blank">https://disneyworld.disney.go.com/guest-services/cognitive-disabilities-services/</a>. Their official brochure for guests with cognitive disabilities is here: <a href="https://secure.cdn1.wdpromedia.com/dam/wdpro-assets/help/guest-services/guests-with-disabilities/WDW_Cognitive_Guide_compressed.pdf" target="_blank">https://secure.cdn1.wdpromedia.com/dam/wdpro-assets/help/guest-services/guests-with-disabilities/WDW_Cognitive_Guide_compressed.pdf</a><br>
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7. Use your phone flashlight or buy a mini light for your child who is afraid of the dark areas on rides. On one of the rides, it became pitch black for a minute, and we just sat there. I ended up using the light of my phone to comfort Evie, letting her know that everything was ok and that we could have light if we needed to. She definitely felt better after seeing the light.<br>
<br>That’s what I have for now! Please share your Disney hacks for feeding tubes and sensory needs of you have some! <br>
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<br>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-41414595992261560282019-11-03T20:57:00.000-05:002019-11-03T20:57:17.394-05:00Evie's First Trip to Disney World<div dir="auto" style="caret-color: rgb(34, 34, 34); color: #222222; font-family: Arial, Helvetica, sans-serif;">
Hi everyone! We just got back from my first trip to Disney World! My mommy didn't know if I'd like it because I get scared of large crowds and noises. She wrote me a social story about our trip before we went. I asked her to read that book at least twice a day to me. </div>
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Then we got on an airplane (I love airplanes) and went to Florida! Mommy was busy going to work for 2 days. I got to swim at my Yin-Yin and Ya-Ya's timeshare resort and I loved it. </div>
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Mommy was really happy about having something called Sonny's BBQ for dinner. For dinner, there was no high chair in our hotel room, so Mommy pulled out a portable kids' desk for me and I ate dinner off of that. <br>
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We changed hotels to be closer to Disney World, so we could take a bus to see Cinderella. I love singing Wheels on the Bus when we're on the bus! Our resort was called Port Orleans Riverside. Mommy picked it because it was a Moderate level resort with a toddler pool. It's supposed to be one of the quietest resorts at Disney. It was definitely quiet! The main building where we checked in was really pretty and had lots of sofas for me to play on. It had a working water mill, a food court, and an arcade too. I saw a big horse and carriage and said "Neigh" to the horse. There was a boat too!<br>
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There was a problem with the resort seeing our special requests for our hotel room to be on the first floor. So we got a royal upgrade from Princess Tiana and we got to be in a royal room instead of the standard rooms! I loved the fireworks on the headboards! </div>
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There was a lot of walking at Port Orleans Riverside, which looks like a plantation with a river along it. The river has snakes and gators! We came out of the main building and crossed a bridge to come to our building. Port Orleans is so big, the land space is as big as Epcot's! </div>
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Mommy and Daddy and Yin-Yin and Ya-Ya took me to Epcot the first day. There was a very big white ball that everyone made a big fuss over. I couldn't play with it, so not sure why everyone was so happy about it. It was SO hot! We went into stores a lot to get some air conditioning. </div>
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My favorite part was seeing Winnie the Pooh in Great Britain. He was a big yellow bear and he was so soft! I gave him a kiss. I got very drowsy in my stroller and fell asleep while everyone else ate lunch in France at a cafe. Mommy and Yin-Yin tried the Chinese teriyaki bao as part of the International Food and Wine Festival. </div>
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Afterwards, in Norway, I walked over to the kids' table where they gave me a sticker and a suitcase baggie to collect stickers from other countries. We used our Disability Access Pass to get on the Frozen ride, which cut down the wait in line from about 50 minutes to 5 minutes. I enjoyed seeing Olaf, but I was scared because it was dark and there were loud snow monsters.<br>
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We stopped by the Character Meet and Greet and I met Mickey, Goofy, and Minnie. I high-fived Mickey, did not like Goofy, and kissed Minnie. It was a little scary with lots of people being excited, cameras flashing, and people clapping, but I made it through.<br>
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We also went on the Nemo ride, but it was also dark and loud, and I hid my face in Mommy's neck until the turtles came out. But I LOVED the Aquarium outside of Nemo's ride! <br>
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For dinner, we went to The Land, which is next to Nemo's ride, and there was a nice big area to eat a quick dinner and rest. It was a good first day! Not sure why everyone was saying their feet hurt. Mine felt good. </div>
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We were supposed to go to Animal Kingdom today, but realized that the Magic Kingdom closed early the next day at 6 pm, so we switched our days. I knew I was going to meet princesses today, and I signed "Yes" really hard when Mommy asked me if I wanted to meet princesses.<br>
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We went on the Winnie the Pooh ride. It was a long wait for a short ride, but I did like this ride the most out of all the rides so far. I pointed at Pooh when I saw him. </div>
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We used the DAS pass for the It's A Small World ride. Guys--I don't know about this ride. The song is catchy, but it's very long and they sing really loudly. I did like pointing at the animals I saw on the ride. But I kept asking Mommy if we could get off and she said no. </div>
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We also went to a place called Princess Fairytale to meet Princess Cinderella and Princess Elena of Avalor. I recognized Cinderella and blew her a kiss. I did not know who Princess Elena was, and didn't want to stand with her for a picture. </div>
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Auntie Jill (our Disney planner) got us a reservation at The Plaza for dinner. Mommy told them I was sensitive to noise and they got us a corner table by ourselves. I still asked Yin-Yin to take me outside. </div>
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There were a lot of people hanging out in the streets to get ready for the fireworks. But we were ready to go home. I love being in our hotel. I just like to sit on the bed and read books or watch music. </div>
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HOLLYWOOD STUDIOS<br>
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We made a last minute switch from Animal Kingdom to Hollywood Studios because Mommy couldn't do another day in the 90+ degree heat, and AK is the least air-conditioned park. <br>
We took the Port Orleans bus to Hollywood Studios, and I decided to take a nap right when we arrived. This meant that Mommy and Daddy got to go see the new Star Wars land! Daddy was very happy. He asked Kylo Ren for a selfie, and Kylo Ren said a very firm "NO." Then Mommy went behind the storm troopers and got a picture with them anyway. They went on the Star Wars simulator ride, and they only had to wait 30 minutes to get on!<br>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVTmI9aDYEJtkv8GwDQo_TdwJTDY2_tSzYI8NWBysdmCkUbsCV7KDk3_tiNbe3KC985AHPSea_Ev-HX7J8M14xO4DQ3Z5LUY19xOIcGklqU-j8xuk0cIsqKub_Nlef_7gALEyima7wDTsY/s1600/2019-11-03+17.07.29.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVTmI9aDYEJtkv8GwDQo_TdwJTDY2_tSzYI8NWBysdmCkUbsCV7KDk3_tiNbe3KC985AHPSea_Ev-HX7J8M14xO4DQ3Z5LUY19xOIcGklqU-j8xuk0cIsqKub_Nlef_7gALEyima7wDTsY/s320/2019-11-03+17.07.29.jpg" width="240" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"></a>When I woke up, we went to the Frozen show. Mommy was really happy, because whenever she mentioned the DAS pass, people just waved us right on to the ride or show. I wasn't too sure about the Frozen show, but when they sang "Let It Go," I perked up and started waving my arms. <br>
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The People Mover car ride wasn't bad. I liked the A/C and looked around, but at some points it was very dark and I heard people screaming. Daddy said it was from a roller coaster in the next room. <br>
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Everyone was really happy that Uncle Joe suggested we go to the ABC Commissary to eat and to rest. I took a nap on top of Mommy for 2 hours in the Commissary. That is my favorite place to nap.<br>
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For dinner, we went to the Brown Derby restaurant. We didn't have a reservation, but since we went at 5 pm, there was a seat, and we got a corner booth! I wasn't scared in this restaurant. It had a nice vibe and plenty of space.<br>
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DISNEY SPRINGS<br>
The next day, we took the ferry boat from Port Orleans to Disney Springs. It was still really hot, but we made it to Earl of Sandwich and the biggest Walt Disney Store in the world. There was also a Ghirardelli store, a Lego store, and lots of food. <br>
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Then we headed back to ride on the Disney Magical Express to the airplane to go home. Daddy really liked that we could check our bags onto the plane from the hotel so he didn't have to carry as much.<br>
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It was a good trip, but I was so happy to be home, that I did a tour of my living room and asked to play flashcards at 1 am with Mommy. <br>
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See Mommy's tips below for Disney! (She will do a separate post about sensory and tubie needs at Disney)<br>
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MOMMY'S TIPS<br>
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1. Disney app: definitely download this--you can skip the line and do mobile food orders at quick service locations, order fast passes, see your hotel reservations, find hours of each park, see bus schedules and updates, and so much more. There's also a Disney Play app that is interactive with what's in the parks.<br>
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2. Two words: NECKLACE. FAN.<br>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy9Yz9o6I0VN9lgi9FNFC4QI0tUHYB5ZZAf4IZWgpdFKP2XW872N6iuBxB0yrvTnrNk9a2XuWcJGNsYr-Cdly8DbzFG_-THIo-UfUS-cqOQtXJwBspyQEQr8Y5cM0ozPUL_bnGkWFbQVEI/s1600/2019-11-03+17.12.41.jpg" imageanchor="1" style="font-family: -webkit-standard; margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1600" data-original-width="1203" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy9Yz9o6I0VN9lgi9FNFC4QI0tUHYB5ZZAf4IZWgpdFKP2XW872N6iuBxB0yrvTnrNk9a2XuWcJGNsYr-Cdly8DbzFG_-THIo-UfUS-cqOQtXJwBspyQEQr8Y5cM0ozPUL_bnGkWFbQVEI/s320/2019-11-03+17.12.41.jpg" width="240" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"></a>This was my saving grace for the hot weather. If you are going in December, you are so smart. But if you're going when it's hot, get this fan. Even the Disney cast members were asking me where I got it. <br>
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B07SCKDPH1&asins=B07SCKDPH1&linkId=683a5f7dfa3185e10161a4b015886060&show_border=true&link_opens_in_new_window=true" style="height: auto; width: auto; max-height: 80%; max-width: 80%;"></iframe>
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3. Sun umbrella: If you have black hair like I do, then you know that direct sun can make you feel like your brain is frying. I loved having this umbrella when we were walking long distances outside.<br>
<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B002HI08HS&asins=B002HI08HS&linkId=eb212989fc2699f13b8163120e5c27f9&show_border=true&link_opens_in_new_window=true" style="height: auto; width: auto; max-height: 80%; max-width: 80%;"></iframe>
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4. Cooling cloths: I saw lots of people with these, although they bought the Mickey version. I love that I bought them cheaper ahead of time.<br>
<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B07Q1WX56K&asins=B07Q1WX56K&linkId=e24fb16224ca762850a886dd3b27110a&show_border=true&link_opens_in_new_window=true" style="height: auto; width: auto; max-height: 80%; max-width: 80%;"></iframe>
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5. Cooling Gel Patches: I put one of these on the back of my neck and one my forehead under my hat and really felt the difference.<br>
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B07P7LSFDX&asins=B07P7LSFDX&linkId=77668aec798aaed1ba44314686d3a6fc&show_border=true&link_opens_in_new_window=true" style="height: auto; width: auto; max-height: 80%; max-width: 80%;"></iframe>
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6. Collapsible water bottle: Ice water is free and plentiful at any Disney quick service food place. I just kept refilling my water bottle with ice water wherever we went.<br>
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7. Spare cell phone battery: SO IMPORTANT. With all the pictures you take, and surfing the net when you rest, you will drain your phone battery by lunch. This also charged my fan necklace when it died!<br>
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B07PJHQ8DF&asins=B07PJHQ8DF&linkId=0f298149da2893754cec54c841b22156&show_border=true&link_opens_in_new_window=true" style="height: auto; width: auto; max-height: 80%; max-width: 80%;"></iframe>
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8. TILE for electronics: One of us lost our phone on the People Mover--luckily it was on a seat and was found, but having a TILE on your cell phone could be the difference between losing your phone and not losing it. <br>
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B07VPRQYGZ&asins=B07VPRQYGZ&linkId=828f5a829cb50b3d4de27e5e86974758&show_border=true&link_opens_in_new_window=true" style="height: auto; width: auto; max-height: 80%; max-width: 80%;"></iframe>
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9. Fanny Pack: The last time I wore a fanny pack was in the early 90's, but I have wholeheartedly embraced this again for the amusement park situation. It kept my hands free, and I easily stored my wallet, Evie's glasses, Magic Band for Evie, and my phone in this one!<br>
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B07RL1Y3W6&asins=B07RL1Y3W6&linkId=8ede4154f613d8d044f0a0df1d9c3a0f&show_border=true&link_opens_in_new_window=true" style="height: auto; width: auto; max-height: 80%; max-width: 80%;"></iframe>
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10. Stroller Fan: I am annoyed that I left this at home and kept wishing I had it for Evie's stroller. She definitely felt the heat, and wouldn't use my fan. This one would have stayed mostly out of sight. </div>
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11. Stroller: We used a City Mini GT stroller, and it held up really well. It had good shade and reclining for Evie, and was durable enough and comfortable enough for us. A stroller caddy and a Mommy hook were key for taking along our bags and drinks! <br>
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B079Q33GBL&asins=B079Q33GBL&linkId=a61aa4dfe27096dc9e22f03a116dab43&show_border=true&link_opens_in_new_window=true" style="height: auto; width: auto; max-height: 80%; max-width: 80%;"></iframe>
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12. Disney planner: our friend Jill, who is also a Disney planner, took care of booking our resort, getting fast passes, reserving the Magical Express, and so much more. It was great to have someone else paying attention to the details! </div><div>*If you use our Amazon links, Amazon gives us credit that we use towards Evie's book fund, and we all know how much she loves books!<br>
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<span style="font-weight: normal;">Thanks to all who followed our feed during our trip to Disney! It was a great/magical time! Stay tuned for Mommy's blog post on sensory issues and feeding tubes at Disney! </span></h2>
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<br></div>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-82157628481650644252019-09-30T21:16:00.000-04:002019-09-30T21:16:04.878-04:00The best $9.99 I ever spentI used to think that the best way to spend $10 was to buy cider donuts fresh from the farm. But today, something else gave cider donuts a run for the money.<br>
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Evie's NOVA Chat, or augmentative communication device, decided to go kaput today. The sound worked, but the screen was dead. I called Technical Support, but it was confirmed that the device would have to be sent to Texas to be repaired. Insert crying emoji.<br>
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I didn't realize how big of a deal this was until Evie sat at the dinner table and started looking around for her NOVA Chat. She wanted to tell me something, and couldn't. I tried to guess. This amounted to further frustration, which culminated in lots of yelling from Evie. I told her to use her inside voice, but I was just as frustrated as she was when I couldn't understand what she needed. Dinner took a very long time. She didn't even want a hug.<br>
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I went on the Saltillo website and printed the "low tech"version, which are PDF's of core words. I showed her the pictures, and she really tried, but when she pressed a button that was supposed to trigger a new screen, she couldn't understand why the paper didn't change like a computer screen. <br>
More frustrated roaring and yelling ensued. (Did I mention that people with Down Syndrome are NOT always happy?)<br>
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By the time dinner was over, we were both roaring at each other. Even though we had just read "Dinos Don't Yell" this morning. <br>
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And then...I desperately googled Augmentative Communication apps. There are a ton out there. And they all look different. If I didn't find the exact same setup, Evie would get frustrated in a different way. The iPad version of Evie's vocal set, called "Word Power 60," is usually $300.00. I didn't feel like spending that much money for a temporary fix, but they have a lite version for $9.99. I thought $10 was worth it for 3 days of sanity, so I downloaded it. <br>
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<tr><td class="tr-caption" style="text-align: center;">Saltillo Touch Chat Lite</td></tr>
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As soon as I showed Evie the screen on her iPad, it was like a different girl was in the room. Evie instantly lit up, started saying all the things she had been wanting to say, and started exploring the different pictures that the iPad version had. I am still stunned by the transformation as she regained her "voice" and was able to interact with me. <br>
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This lite version does not have the sound, but she is able to tell me what she wants to say as I read the screen. THANK YOU, SALTILLO, for making a lite version so that my daughter and I don't go insane from frustration. This further confirms that I prefer Apple products more than Androids, but that's for another blog post. I am still wondering if I've created a monster by combining a source of entertainment with a source of communication, but I think the benefit outweighs the risk. <br>
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Being a special needs mom definitely stretches my brain and patience, but I still wouldn't trade her for anything. She has a lot to offer, and just needs a voice. <br>
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If you haven't seen it yet, take a look at this movie that was made by MIT to be shown at the United Nations for World Down Syndrome Day on March 21, 2019. Evie makes an appearance a couple times! Keep watching to hear her giggle! <a href="https://vimeo.com/325722356">https://vimeo.com/325722356</a> (password: MIT).amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-49799243955411732912019-09-15T17:17:00.001-04:002019-09-15T17:17:44.575-04:00That time when Marie Kondo gave us advice I was reading Marie Kondo's Instagram site one day, and it asked people to comment on their home organization struggles. I thought to myself "why not," and commented that I struggle with keeping my daughter's feeding tube and eating supplies organized on the kitchen counter. <br />
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<tr><td style="text-align: center;"><a href="https://cdn.shopify.com/s/files/1/2975/7656/files/MKSADLER-5609_2_768x.jpg?v=1561414270" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="800" data-original-width="709" height="320" src="https://cdn.shopify.com/s/files/1/2975/7656/files/MKSADLER-5609_2_768x.jpg?v=1561414270" width="283" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Marie Kondo is known internationally for her philosophy of tidying and organizing. </td></tr>
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I was surprised to get a personal message from someone on her team, asking for my e-mail address so that they could better understand the situation. I gave her my e-mail, and sent her a picture of the messy status of my kitchen counter. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSpOzbcIuzUY2UN1aNRVGJnjQ7OnPH6IPqIPdBAoyo9gR-lGPr4RcF5tjIkmWjdG53sceviYc5VevF9EexHq0OuzlNpI3828iVeubKlCvs2S6lHdkRXJDfHcqK44-sjJxEZf_7r_GXW6mX/s1600/unnamed.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSpOzbcIuzUY2UN1aNRVGJnjQ7OnPH6IPqIPdBAoyo9gR-lGPr4RcF5tjIkmWjdG53sceviYc5VevF9EexHq0OuzlNpI3828iVeubKlCvs2S6lHdkRXJDfHcqK44-sjJxEZf_7r_GXW6mX/s320/unnamed.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oil, Miralax, calorie supplement, cups and bottles galore, cube trays, chewing devices...etc = no joy on my kitchen counter</td></tr>
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She asked me a few clarifying questions, about whether the drying rack was for sterilized items, and other thoughtful questions, and then I got an e-mail that surprised me. </div>
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The team had been a little stumped on what advice to send me, so they asked Marie Kondo herself! And Marie Kondo sent us a message directly, to "Amy-san and Evie" and here's the advice she gave us (translated from Japanese via her team):</div>
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<div style="caret-color: rgb(34, 34, 34); color: #222222; font-family: Helvetica, Arial, sans-serif; margin-bottom: 15px;">
<i>"I see...okay! So, we tend to focus on a specific spot in the kitchen where it seems like there’s a lot of stuff. The secret to this is to look around the other areas of the kitchen and see if there are items that don’t spark joy for you. Once you tackle the entire kitchen, there might be a spot that has extra space that you can use for the supplies that are on the counter.</i></div>
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<i>There’s another way using boxes. With the perfect sized box, you can separate your items with each category (ex: bottles/plates/cups). Once the items find their “home”, you will realize that the kitchen seems to ‘spark joy’ for you. Amy and Evie, good luck with tidying!!"</i></div>
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I was tickled pink. Marie Kondo herself! </div>
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Weeks passed since receiving her advice--I just haven't had the time to do some organization. But during a lunch break, I walked into the <a href="https://www.muji.com/us/" target="_blank">Muji</a> store on Newbury Street, which I have been wanting to do for months. After silently gushing in excitement over their pen selection, I saw shelves of storage boxes calling my name. I was instantly inspired, bought a bunch of different sizes, and as soon as I got home, I set to work. </div>
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I realized how many different cups and other feeding devices had collected on the counter--they were not giving any of us joy. So they went back to the basement. I then separated the cups into a container, bottle caps in another, and so on. Putting things in the Muji boxes gave me joy. </div>
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Here is the finished product. I have less annoyance and more joy now when I look at the counter! Everything is where it should be!</div>
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<tr><td class="tr-caption" style="text-align: center;">Newly organized supplies</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjffEznAepIHzYu496eKrMkvXE7JUL3PDYrIi6vEZavT5ln77UIKJ6uXxM9mxA7UgqS2nPDBxAmnV3IIBS1WWcMXzjQsKcduQrKMhHjJVfmzywP09y55ezuekHA1D8GBwE2sTl9cgUYpImF/s1600/2019-09-13+17.49.15.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjffEznAepIHzYu496eKrMkvXE7JUL3PDYrIi6vEZavT5ln77UIKJ6uXxM9mxA7UgqS2nPDBxAmnV3IIBS1WWcMXzjQsKcduQrKMhHjJVfmzywP09y55ezuekHA1D8GBwE2sTl9cgUYpImF/s320/2019-09-13+17.49.15.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Closeup of box arrangement</td></tr>
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Evie doesn't seem to understand how awesome this is on so many levels. I tried to tell her but she told me she wanted to play flashcards. Oh well. Whatever gives her joy. </div>
amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-86607413694085615712019-07-29T22:01:00.004-04:002019-07-29T22:01:54.025-04:00When the School Nurse Calls...You know you're a mom when your phone rings, and you recognize the number as the one for the school nurse, and promptly hold your breath, imagining the worst. Usually they say right away "Evie's ok," and then continue on. Today they didn't say that, and I was having a minor heart attack with every second that passed when someone who WASN'T the school nurse was calling me FOR the school nurse. <div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNTYne2xFTIUIP5OWmtC4MzJengKbYFNbFyC4dKPxwAaOINjShRrG8fbpqXlLl7GdwOMKufAaZ4kDnRJBs5amQJBDhJUdNP9ULW2sMpp4u89ANwxDeKi8ioGjQdBvRC5T3CWvhRHf-71uh/s1600/2019-07-29+20.57.42.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNTYne2xFTIUIP5OWmtC4MzJengKbYFNbFyC4dKPxwAaOINjShRrG8fbpqXlLl7GdwOMKufAaZ4kDnRJBs5amQJBDhJUdNP9ULW2sMpp4u89ANwxDeKi8ioGjQdBvRC5T3CWvhRHf-71uh/s320/2019-07-29+20.57.42.jpg" width="240" /></a></div>
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Apparently there was a substitute nurse today (and for the next 2 weeks), and she was having trouble getting Evie's g-tube extension connected to her stomach port. Somehow the whole g-tube button came out of her stomach, and the one other time this happened at school, the school nurse knew exactly how to get it back in and didn't even call me until it was back in. </div>
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Not today. </div>
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The person calling me said that she was calling for the nurse, and that Evie's g-tube button fell out, and would I like to come and put it in? I said, well, I'm at work in Boston, and could go over in 40 minutes, but does the nurse know how to put the button back in? The answer was no. </div>
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And so I told the nurse I would walk her through it if she was game. She was, and I told her how to prep for the insertion of a new g-tube button. </div>
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For those who are interested, the kit comes with a small syringe. After inflating the balloon to make sure there are no leaks, you draw up 2.5 mm (or whatever the kit says for your size) of bottled water into the syringe. Then you put sterile lube on the tip of the deflated balloon for smooth insertion. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFBfRiRAymZ0HJ9OPOhEeJ3P3xeqftPqaYlJkVrEQ5YkDpK36r3X9cLzJCPNQSJYuekNuxE2NAFZEf2ubSCPabXllcrypYF8b6roSUColaOPS8OdPJYPvUKkzySe2obRYtWl1VOM_d2yyC/s1600/blogger-image-1062367709.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="360" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFBfRiRAymZ0HJ9OPOhEeJ3P3xeqftPqaYlJkVrEQ5YkDpK36r3X9cLzJCPNQSJYuekNuxE2NAFZEf2ubSCPabXllcrypYF8b6roSUColaOPS8OdPJYPvUKkzySe2obRYtWl1VOM_d2yyC/s320/blogger-image-1062367709.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A pic from one of my earliest posts about learning to g-tube.</td></tr>
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Once she was prepped, I wished her luck, and stayed on speakerphone. I heard them hold Evie down as I instructed, and then promptly heard Evie hollering and crying. The nurse inserted the button successfully, but then couldn't get water to flush through the tube as Evie was straining and crying. She wasn't in pain--she was just angry at being held down. I gave the nurse permission to skip the water flush this morning and just to give her plenty of chances to sip water from a cup. Evie got lots of hugs from her 1:1 aide after that, and calmed down. </div>
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Crisis averted, I went back in the conference room and tried to catch my breath as I jumped back into my meeting at work. </div>
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Hours later, I am wondering to myself if I will need to start a campaign for all of the school nurses to have g-tube training. Tomorrow, I'm going to be marching to the substitute nurse's office to train her and train Evie's 1:1 to do g-tube for her. Knowledge is power, and in this case, knowledge saves a trip to the ER and a possible surgery to re-insert a g-tube button if the button is out too long. </div>
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I salute the nurses who taught me how to do this myself. I salute all the caregivers out there who have become medical experts because they care for someone so deeply that they learn all sorts of unheard of skills in the common population. I salute all the people in our lives (grandparents, friends, teachers, babysitters) who haven't been afraid to learn how to handle Evie's g-tube, and have jumped in and learned how to help. </div>
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This may prompt someone to ask "When is Evie going to be off the feeding tube?" Well, it's a very slow journey, which can be slowed down if Evie feels like we are forcing her to eat, but she is much closer! Today in feeding therapy, she put a puff all the way in her mouth for the first time! She moved it around her mouth and then spit it out, but she didn't gag or cry, which is HUGE. Thanks for cheering us on!</div>
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amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com1tag:blogger.com,1999:blog-852306677070926015.post-15548433961491791652019-07-21T17:24:00.003-04:002019-07-21T17:24:37.921-04:00Evie the Wolverine and GlassesHow many optometrists does it take to find Evie's glasses prescription? Today I found out the answer is 3.<br />
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Over the last several months, I thought I noticed Evie squinting. I at first brushed it off because her last retinoscopy (the process of determining one's glasses prescription by watching the direction of the light reflex on the retina) had shown a mild myopic/near-sighted prescription. But I got to thinking that it had been a couple years since this anesthetized exam (aka Exam Under Anesthesia (EUA)), and decided to take her to a pediatric ophthalmologist known for her touch with kids with special needs. <br />
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It was a battle zone. We tried it the nice way, but Evie kept saying Bye Bye and trying to open the exam room door. I held Evie down while my husband kept her legs from flailing, and the ophthalmologist pried her tight lids open while trying to take 1-second swipes with her retinoscope to see the retinal reflex. After we were all a sweaty mess, she declared that Evie was a -6.75 prescription and definitely needed glasses. As a mom and an optometrist, this number shocked me.<br />
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I talked it over with colleagues, I went back and forth about whether to question the findings. In dealing with my own child, I couldn't make the decision because I was too emotional about it.<br />
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I decided to try myself, and dilated her eyes before bedtime. I tried while she watched her iPad, and confirmed more myopia. However, she would not cooperate enough for me to get a great reading. So I waited for her to fall asleep, and crept into her bedroom. Friends, doing retinoscopy through crib slats is not recommended. I had to contort my hands in positions that just weren't natural. I again saw more myopia than I wanted, but could not get her eyelids pried open enough to hold both my scope and the trial lens at the same time, while contorting my body. <br />
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Finally, I made an appointment with an optometrist known for her work with kids with special needs, and who I wanted to meet anyway. Just one more person giving it a shot would at least help me feel better about what I was going to prescribe. This time, I dilated her eyes before the appointment (don't try this if you're not a licensed professional or without the permission of your doctor), which turned out to be key. There were way less tears, so that the drops could actually work and give us an accurate reading. My dear daughter is ever so suspicious of instruments held near her face, so I used the flashlight on my iPhone to check if her pupils were dilated. Phone near my face, Mommy? Sure, no problem! I love phones!<br />
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Enter in the pediatric optometrist. She gave it a shot with just me holding Evie down, and quickly realized that my warnings were merited, and asked an assistant to help hold her lids open. This assistant quickly found that Evie's lids like to flip very easily. So the optometrist then went to get the other pediatric optometrist, who happens to be a friend of mine, and she pried open Evie's lids while the other optometrist did the retinoscopy, and I had one leg thrown over Evie's legs, while holding her arms against her chest, and holding her head down with my chin. The assistant helped me to sing Twinkle Twinkle Little Star over Evie's screaming. It was glorious.<br />
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Of course, Evie got loose every so often, because we were sweaty and became more slippery. We hadn't gotten around to cutting her nails, so my little Wolverine got loose and would swipe at my arms, chest, neck, and hands in her desperate attempts. I am the walking wounded. <br />
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But we got a prescription, and it's the best yet! It makes the most sense, and it's the most precise (she had some astigmatism). For the eye nerds reading, it was a -3.00 -1.50 x180 and -4.00 sph. Evie yelled Bye Bye very loudly when we left.<br />
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You may be wondering about what frames Evie will be getting. Out of Miraflex, Nanovista, Dilli Dalli, and Tomato Glasses, I like the look and weight of the Tomato Glasses the most. They are in my opinion the cutest, and very flexible with an adjustable nose bridge and replaceable parts in each kit. If she destroys them, then I'll probably try Nanovista. I managed to try on some frames with 5 seconds of success in having her keep them on. Pray for me. :)<br />
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<tr><td class="tr-caption" style="text-align: center;">You want me to wear these things all the time??</td></tr>
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The moral of the story is:<br />
1) Always trust your gut about your child's vision, and get another opinion if needed.<br />
2) Sometimes it takes some creativity to get better results for our kids. You can ask your eye care professional if you can bring the child to the visit dilated already, if you have similar levels of uncooperation as we do! Asking them to observe the child in the waiting room first before bringing them into the exam room can take advantage of a lower level of anxiety if the child is scared of doctors.<br />
3) It never hurts to get your eyes checked at any age! Kids with DS are checked around 6 months old to look for an eye turn or high glasses prescription that could hinder their development.<br />
4) Listen to Laurie Berkner's "These Are My Glasses" song over and over again to help your child think that glasses are fun. It's SORT OF working for Evie!<br />
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<br />amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-72947745762808405972019-07-15T19:34:00.004-04:002019-07-15T19:56:50.698-04:00Evie's and Amy's favorite things--Prime Day editionHi Evie fans! I see some favorite things being featured on Amazon Prime Day (July 15-16), so I thought I'd share them. I'll keep adding as deals get released the next couple days!<br />
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EVIE's RECS:<br />
Tegu Blocks: Evie got these when she was quite young, and as she ages, she appreciates the Tegu Blocks more and more. They have a satisfying magnetic click, come in different shapes and sizes and colors, and they build fine motor skills!<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B018KHA6X0&asins=B018KHA6X0&linkId=ae3a3dcd9433d814000c9bed76978a5d&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe><br />
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Anything Peppa. Enough said.<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B07BC4XPW9&asins=B07BC4XPW9&linkId=bff396ce3de7dbad7423dc1782de5eca&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe>
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This isn't exactly on super sale, but we love it so much, that I wanted to share it anyway. Peppa's house has lights and sounds as well. You can turn off the sounds once you get annoyed (it took me about a week to get annoyed).<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B07BC6SG83&asins=B07BC6SG83&linkId=624d0c96db9dd531a6646e1e467e51d1&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe>
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I just bought Connect 4 for Evie today because she has shown so much interest in this game after watching Blippi play it on Youtube. If you want to be the most awesome house there is, you can buy the lawn version of Connect 4 and we will spend all day with you!<br />
The regular version is on sale for $8.39!<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B06XY881H4&asins=B06XY881H4&linkId=195b91d1200d3c1f9413049b46410e9e&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe>
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Lawn version:<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B00T5HMKSO&asins=B00T5HMKSO&linkId=92b63112f3326216ec920e98dfc44ebd&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe>
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Evie loves her dot markers! She's still not great at exerting enough pressure on the markers to make too much of a mark, but with dot markers, she's able to make more of a statement on paper.<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B0763MVRLC&asins=B0763MVRLC&linkId=c231cb9792afdad4aabd8cafa024af72&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe>
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20% off of these supportive toddler chairs! They remind me of a Rifton chair without the saddle part. <br />
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Evie recommends all play kitchens! If I had seen this, I might have gotten it instead of our IKEA kitchen! Only $47.70 right now!<br />
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AMY'S RECS:<br />
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I bought these reusable snack bags for much more at Anthropologie. I've been using my pink snack bag for a couple weeks now, and I really enjoy them. They are dishwasher and microwave safe too! The Clear ones are still available last time I checked!<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B0742XCG2L&asins=B0742XCG2L&linkId=af215f6eabd47988befaca1b90c1be14&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe>
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This home air purifier is $49.49 on sale! I have two of these, and am tempted to get another just for the price. It has made a difference in Evie waking up with a sniffly nose. During allergy season (which has been especially bad in Boston), this has been well worth it.<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B071D58ZY5&asins=B071D58ZY5&linkId=eb86ecc9b42c713e93b74da95a81d742&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe><br />
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I wouldn't be me if I didn't post about the Instant Pot. 3 years later, I still make perfect corn on the cob on a 2- minute setting, and my chicken curry always turns out great. I highly recommend this for busy moms! Usually $129.95, marked down to $69.99, and ringing up at only $55.59 right now!<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B01NBKTPTS&asins=B01NBKTPTS&linkId=07a05ce3affd6b828e55b6594e9ec35f&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe><br />
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A really great option for an extra TV you don't want to buy cable for. $14.99 on sale!<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B0791TX5P5&asins=B0791TX5P5&linkId=145652dc3709de1944f39d0d187533b1&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe><br />
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And the gadget we have in many rooms of the house--the Echo dot. Evie loves to listen to music, and we love knowing the weather. You can even use it as an intercom. Usually $50, then marked down to $24.99, now ringing up at only $20!<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B0792R1RSN&asins=B0792R1RSN&linkId=82faf6b15e02c244570b060f2d9b35fe&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe><br />
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Happy shopping, everyone!amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-22609425347117975002019-06-18T17:54:00.005-04:002019-06-18T17:54:51.826-04:00Moving On UpAt Evie's graduation ceremony from her pre-K class today (she's going to the older pre-K class in the fall), she covered her eyes. BUT she then got up and walked over to the teacher when her name was called, and then snuck a peek to see where I was, and then walked to me with her head down and threw herself in my arms. She WALKED to me and knew what she was supposed to do! I call that a victory! 3 months ago, she may not have done either of those things. <div>
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Evie was prepped by her teachers that this was the last day of school. She was not a happy girl when we pulled out of the parking lot and waved goodbye to the school building. We are so thankful that she loves school that much. Why does she love school so much? Because she gets to do things like play dress up! I am now scrambling to collect dress up necklaces, dresses, scarves, gloves, etc to accommodate her love for girly accessories! We went to IKEA this weekend and bought a mirror to put up in her room so that she can play dress up! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtUcnaQ4ZhBbPGSoQD8ZHmqH2pBrFUm_RL8r_sVeKgOM6aiAO5GNqdV66IYEmxwP2IOal1AACKfj9JL0NR5sxWJ9EvIE-gZjJlv3m5WIlSHfc4mrrBGbYp2oZhhGBcWGdqon8vz0dKyXEV/s1600/2019-06-18+17.31.53.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1165" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtUcnaQ4ZhBbPGSoQD8ZHmqH2pBrFUm_RL8r_sVeKgOM6aiAO5GNqdV66IYEmxwP2IOal1AACKfj9JL0NR5sxWJ9EvIE-gZjJlv3m5WIlSHfc4mrrBGbYp2oZhhGBcWGdqon8vz0dKyXEV/s320/2019-06-18+17.31.53.jpg" width="232" /></a></div>
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Another way that Evie is growing up is in her communication skills. Today, I asked her if she wanted to go to the library, and she went to her NOVA Chat communication device and told me "I don't want to." This was the first time she had expressed herself so fully, instead of making a sound of disgust. I still wait for the day that I can have full conversations with my daughter, but this is an awesome start. I am told by the SLP's in her life that she is a superstar with the NOVA Chat, and I am super proud of my girl. <br />
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Peer modeling has been awesome for Evie. She has even started to ask to use the potty, and has done so successfully in the last week of school. Today, her aide had a chance to say some words in the ceremony, and she beautifully said that her classmates have been so supportive of Evie, and she believes that Evie's classmates have benefited by being friends with Evie as well. The other parents nodded their heads in agreement, and this mama's heart just got so full. I am so thankful. I am also so sad to leave her wonderful teaching team--they have fallen in love with Evie. I invited them to our home to give her manicures, because she allowed them to do her hair, apply nail polish, and draw a spider tattoo on her arm. I don't recognize this kid!<br />
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Next fall, we get to have the same wonderful aide, and we were able to meet her new teacher on the way out of the building today. We felt so well taken care of. <br />
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What's in store for this newly-graduated 4-year-old? A lot of trips to the library and the park, and hopefully some beach trips with her grandparents, and then off to summer school (Extended Summer program) for a month so that she doesn't regress too much! Wishing you all a fabulous start to your summer!<br />
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PS Keep an eye out for more info about joining us on this year's Buddy Walk in October!! Evie's other favorite musician is going to be there! AAAAAAHHH!<br />
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amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-37213853037779831762019-05-11T20:41:00.001-04:002019-05-11T21:55:06.189-04:00What I Want For Mother's Day<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #222222; font-size: large;">Dear Daughter:</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #222222;">I guess the easy answer for saying what I want for Mother’s Day is that I would love a big fat nap. But beyond that, from the depths of my heart, what I want for Mother’s Day and any other day, is knowing that I have helped you be your best self. I want to know that you are enjoying life to the fullest, and showing this world that you are so capable, even if you have an extra copy of a chromosome.</span></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #222222; font-size: large;">It doesn’t bother me that you took a while longer to learn to walk. I am mostly proud of the ways that you have learned to enjoy the small things, like making a duck out of Play-Doh, and playing flashcards with mommy. I want you to know that although the world says that you can’t do many things, that the smaller microcosm of the community around you is cheering for you so hard. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #222222;">When I post things on social media, our friends notice the little things about you like how you roll up your sleeves before you set yourself to a task, or how you fold your little hands in your lap and giggle when you are so proud of yourself. I am beyond thankful for people who believe in what you can do, and who teach their children to include you and see all that you have to offer. The fact that your whole classroom clapped for you when you took successive steps all by yourself is testament to what the world can be if we all cheered for each other more often. </span></span></span><br />
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<span style="background-color: white; font-size: large;"><span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white;">You are definitely enjoying life right now as you sort your plastic vegetables by color into their respective buckets. You are yelling "pepper" and "apple," and looking so pleased with yourself! I just high fived you after you sorted them all for the second time. You are on your third time now of sorting the vegetables, and I am all for that, because you are capable.<span style="font-size: xx-small;"> </span></span></span><span style="background-color: white; color: #222222; font-family: "arial" , "helvetica" , sans-serif;">I love you my daughter, and I am proud to be your mama. </span></span><br />
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<span style="background-color: white;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Love, </span></span></span><br />
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<span style="background-color: white; color: #222222; font-family: "arial" , "helvetica" , sans-serif;"><br /></span>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0tag:blogger.com,1999:blog-852306677070926015.post-76540970097639495532019-04-15T17:18:00.003-04:002019-04-16T11:12:44.585-04:00The waiting makes it sweeter...I have to admit that I love fast results and efficient progress. Evie has challenged that part of me, but has taught me that the waiting makes the victory all the more sweet. <br />
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While her peers (even the ones with Down Syndrome) went on to walk and run, Evie trucked along in her walker. I have learned that I need to remember that Evie goes on her own timeline and she will get there, but 3 years of waiting was hard! <br />
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But she finally reached this huge milestone, and I am so proud! And not only were her parents cheering her on, her classmates gleefully counted each step that she took, and her friends and family from afar celebrated with us. <br />
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Here's a quick clip for you to share the excitement with us:<br />
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I can't wait to give away the wheelchair!<br />
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Just a couple weeks later, she now walks confidently down the hallway to the couch at home, and is attacking the stairs with gusto. I feel happy every time I see her walk. She wears Ikiki shoes indoors to allow her to wear her orthotics whenever she's walking. They squeak every time she takes a step. The squeaking brings joy to my heart.<br />
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We highly recommend the Ikiki shoes if you're looking for some sturdy shoes that fit SMO's!<br />
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<iframe frameborder="0" marginheight="0" marginwidth="0" scrolling="no" src="//ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=evietheextra-20&language=en_US&marketplace=amazon&region=US&placement=B07C66KQ1F&asins=B07C66KQ1F&linkId=e59d08606a020dd2b3059b2428cfbb65&show_border=true&link_opens_in_new_window=true" style="height: 240px; width: 120px;"></iframe>amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com4tag:blogger.com,1999:blog-852306677070926015.post-30973193334442382352019-01-24T19:18:00.000-05:002019-01-24T19:18:25.749-05:00NOVA Chat Hacks (i.e. Evie's talking device hacks)For those of you who don't already know, Evie has an augmentative communication device called a NOVA Chat. While Evie's oral motor skills are getting stronger, she still is not able to express herself verbally, and needs a way to communicate, especially in the school setting with people who do not know her sign language motions.<br />
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When we were first presented with our options at Boston Children's Hospital in the augmentative communication clinic, we had to decide between the iPad and the NOVA Chat. We chose the NOVA chat because Evie is already way too attached to the iPad and we want her to see the NOVA Chat as a communication device and not a potential Youtube playing device. But the iPad is a perfectly good choice for other kids!<br />
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Evie's preschool team has fully embraced the NOVA Chat. We attended a half day training with a Saltillo rep, which was helpful, but the training was oriented more towards the therapist than the parents.<br />
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The NOVA Chat has a home page built of various core words that trigger other menus of related words. For instance, if Evie wants to say "Want eat breakfast," she can hit want--> eat --> breakfast. When she taps "eat," another page of food options pops up. She loves naming fruits and vegetables. Her favorite is "Chinese cabbage." As you can see below, if you click on the Chinese food square, you could potentially order Chinese food on the NOVA Chat!<br />
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<tr><td class="tr-caption" style="text-align: center;">Lots of Chinese food options on the NOVA Chat! I'd like egg drop soup, please! </td></tr>
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In all seriousness, life with a NOVA Chat takes some adjustment. We are supposed to have the device accessible to Evie at all times, but I will admit that we don't always have it there, because we know all of her signs, and she expresses herself to us with sign language. However, we have it at the meal table and when we are starting a new activity so that Evie can tell us if she wants to do something else. She is VERY good at saying "watch iPad."<br />
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Some hacks that I've discovered as we start this journey with augmentative communication are as follows:<br />
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1. A carrying case and a keyguard: I got this case on Amazon for our NOVA Chat 10. We originally started with NOVA Chat 8, which is smaller, but Evie had a lot of trouble with accuracy in tapping the squares. So our trial changed to a NOVA Chat 10 with a 60-location keyboard. We liked the 60-location setting much better than the 30-location because we didn't have to change pages as often when trying to say something. </div>
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2. Name labels: I am terrified of losing this device, since the insurance is paying for it. The first order of business was to use our NameBubbles tags on the device and the case so that her name is on them. I use these same labels on her bottles and wheelchair and backpack. </div>
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3. Tile locator: Tiles were on sale for the holidays, so I thought I'd try them out. I am in love. I have already used the locator to find my phone several times. All you have to do is download the app, press some buttons to make the phone talk with the tile, and you are ready to lose things! </div>
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4. NOVA Chat strap: I would say that this strap has been annoying and helpful at the same time. I would still recommend using it for school use, because when your hands are full with a walker, backpack, and a 28-pound 4 year old, a strap is very useful. </div>
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5. Adaptive reading: As we help Evie navigate the NOVA Chat and see it as a way to express herself, our speech therapist forwarded me a Saltillo resource, which is NOVA Chat pictures that can be stuck on the pages of well-known children's books, so that Evie can read along as we go. We use <a href="https://amzn.to/2TeFr39" target="_blank">Glue Dots </a>to stick these on once we print them out. The picture below is for "If You Give A Mouse A Cookie," by Laura Numeroff. Whomever gave Evie the whole set for her first birthday, you knew what you were doing! <3</div>
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<tr><td class="tr-caption" style="text-align: center;">This book is coming up in Feb in the preschool curriculum, and Evie will be ready!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">An example of how we stuck the picture cards in her book.</td></tr>
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6. Household activities: The trainer and speech therapist also encouraged us to print common daily activities and stick them around the house. Here's a pic of what is in the bathroom for Evie. </div>
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<tr><td class="tr-caption" style="text-align: center;">These pictures show how to say clean, dirty, wet, wash, and dry. </td></tr>
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Evie is pretty good about getting up on her IKEA stool and turning on the faucet by herself, rubbing her hands together once she has soap, rinsing, turning off the water, and then knows how to dry her hands while she leans against my legs. I've been slightly stepping back to see if she notices that she can stand on her own. So far, I've had a 50/50 success rate with that. </div>
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Those are our NOVA Chat hacks! I'd love to hear other people's hacks too! </div>
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For the parents reading this because they are starting this journey, here's a quick summary of the timeline we followed in acquiring a NOVA Chat:</div>
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1. Referral from BCH Augmentative Communication SLP (speech therapist).</div>
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2. Fill out a gazillion forms for Saltillo and the funding company, PRC (forms provided by the therapist at the hospital). </div>
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3. Wait for PRC to let us know that insurance has cleared the rental. </div>
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4. Training scheduled with the school team and parents. </div>
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5. Start trial period, adjust to taking NOVA Chat everywhere. Record instances of how Evie is using the device over the next month (just doing a few days here and there over a progression seems to be ok). </div>
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6. Follow up visit with SLP at the hospital to document progress. </div>
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6. At end of trial period, SLP writes a report from hospital and speech therapist from school writes report. Parents provide the usage log. This goes to the funding company (PRC) and then is cleared with Saltillo (or whatever company you use) and we get to keep the device! </div>
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Some notes about our experience...we started with a NOVA Chat 8 and no key guard, as well as a 30-location setup (i.e. 30 words on the screen at a time). Evie's had trouble finding the very small words, and her fingers kept slipping down to the word below her target. So we switched to a NOVA Chat 10 and a 60-location key guard during her trial, and this worked much better (although is a bit harder to carry around everywhere). </div>
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I hope this helps someone in their journey, as it was a bit confusing at first. Happy Talking! </div>
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<br />amyeyehttp://www.blogger.com/profile/01254824027600599049noreply@blogger.com0