tag:blogger.com,1999:blog-89094334756316273752024-03-12T22:29:37.981-04:00Life as a LeachChoosing joy and trusting God!Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.comBlogger2610125tag:blogger.com,1999:blog-8909433475631627375.post-11401172182130589082020-03-24T16:01:00.001-04:002020-03-24T16:01:29.465-04:0025 Phrases Every English Intermediate Learner Must Know<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/XzjQV5oRtOQ?clip=&clipt=EAAYAA%3D%3D" width="480"></iframe><br /><br />
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Are any of these phrases new to you? Try using them in everyday conversation!Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com7tag:blogger.com,1999:blog-8909433475631627375.post-70280105205069831342020-03-24T12:55:00.004-04:002020-03-24T12:55:55.394-04:00Surgery UpdateAs you can imagine, COVID 19 has caused us quite a bit of stress! We are doing everything we possibly can to keep Abby safe, including working from home and not going anywhere. We used Instacart to grocery shop and wiped everything with disinfectant wipes on the porch before bringing anything inside. We also wore gloves! <br />
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There are many unknowns right now regarding Abby's surgeries. Her orthopedic team canceled all of the pre-op appointments we were supposed to have next week and in April because all outpatient appointments are being postponed for the time being. This means we will not be meeting with ortho, infectious disease, plastic surgery, pulmonary, and ENT right now. <br />
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All elective surgeries in New York have been canceled for the time being, but it is unclear as to when that order will end. Right now, the orthopedic team still has Abby on the schedule for her surgery and subsequent inpatient stay in May. It would take a miracle or two to be able to reschedule all of her pre-op appointments in such a short amount of time, but we will see! They also cautioned me that it will most likely be canceled, but they don't want to take her off the schedule just yet. <br />
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If her surgery is canceled, ortho will start by rescheduling all of the March and April surgeries. Then they will move to May. My feeling is that they most likely won't even start rescheduling until June at the earliest, which means Abby will most likely not have surgery until the fall. <br />
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Frustrating? Yes. We liked the idea of her missing minimal school by doing the surgeries over the summer. She would miss the first quarter or more by having it in the fall. But what can you do? We certainly could never plan for something like a pandemic to wreak havoc on our world!! <br />
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Right now, we are trusting that God will have these surgeries scheduled in His timing and will keep Abby safe until she can have them. Please know that any money that has been fundraised for Abby's surgeries and our extended stay in NYC will only be used for these purposes. If her surgeries are scheduled, that money will be held until she does have them. <br />
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Thank you all for your prayers! Stay safe during this crazy time!Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com7tag:blogger.com,1999:blog-8909433475631627375.post-35177314659928747252020-03-16T12:54:00.000-04:002020-03-16T12:54:35.528-04:00More Educational Activities!Many of you found the academic activities I shared to be helpful, so I have compiled some more. I know doing the same thing can get boring and variety is key...especially if we are out of school for much longer than originally planned. 😒<br />
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* <a href="https://doc-00-04-apps-viewer.googleusercontent.com/viewer/secure/pdf/askbbeep0k6rftr3snj3rgkjm26cgbif/9e2i450pdkm53kpp5l8com1p00460o0b/1584310500000/drive/12034992726853794168/ACFrOgCol3W_qQ_EmR_Muf2eale5CHLnJ02mKPrd-B3sLNNTlUwWURhmStcbguW3BTYpl6zGcvOvGtzrZ_r1kMxm9SqY2fR63ZWTg2qsfAEz3RWBAu5R5KO3bQVRXU6bExpFOMNcfQUD_iWVXc5N?print=true&nonce=2gogoab1cnd78&user=12034992726853794168&hash=7cc5d8mfl077jsnj7nrj25p0cv6g0da8">This is a set </a>of free printable maker station (STEM) activities. You will want to scroll through and probably just print the ones that appeal to your kids. I do like that there are QR codes for each activity with additional resources.<br />
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* Check out <a href="https://docs.google.com/document/d/1SvIdgTx9djKO6SjyvPDsoGlkgE3iExmi3qh2KRRku_w/preview?fbclid=IwAR0mt1yeSVeuFUiR_D-ZMwune3Tr2ocdFRaQcI3JYui0klwTTFyCfRmCzWc&pru=AAABcQRx4p0*hC3fzqcbOHvVPSOE7NxNYw">this list </a>of online field trips and even more <a href="https://www.chesapeakefamily.com/fun/fun-stuff-to-do/9901-virtual-field-trips-kids-can-explore-the-world-from-home?fbclid=IwAR3ctlZM8bHAspfI9rJyJeykEbii5UXynbO9g1Ym8v2MXTiU5gMskArK0ZQ">online field trips</a>! Kids really enjoy these. Just make sure there's a writing component involved so that they aren't just clicking and scrolling! Have them write in a journal about what they learned. For older kids, you will want to move them past the "fact listing" and have them write about how they can use the information they learned or how it applies to something else they already knew.<br />
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*<a href="https://www.edhelper.com/teacher-education/Daily-Free-Learning-Workbooks-for-Teachers-to-Share-with-Parents-while-Schools-are-Closed-Kids-will-actually-do-these.htm"> I share this one with caution.</a> When I see a big "click and print" packet of worksheets, I cringe. There's bound to be a bunch of junk in there that isn't really useful, and half of it won't get done anyway. Choose your child's grade level and scroll through the pages to see what will actually be beneficial for your child. I did find some helpful activities for both of my kids, but I only printed out a few of the 30+ pages each for reading and math! Please don't kill a bunch of trees and worksheet your kids to death.<br />
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* The Cincinnati Zoo is offering daily Home Safaris on Facebook Live at 3 p.m. They will highlight one of their animals and include an activity kids can do from home. Check them out on Facebook <a href="https://www.blogger.com/%3Ciframe%20src=%22https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fcincinnatizoo%2Fposts%2F10158043843010479&width=500%22%20width=%22500%22%20height=%22689%22%20style=%22border:none;overflow:hidden%22%20scrolling=%22no%22%20frameborder=%220%22%20allowTransparency=%22true%22%20allow=%22encrypted-media%22%3E%3C/iframe%3E">here. </a><br />
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* Starting on Monday, March 16, Science Mom and Math Dad will host a daily show called "Qarantime" at 11:00 a.m. (EST) featuring science and math lessons, crafts, and games. You can watch them on Facebook Live daily on Science Mom, or watch the episodes later <a href="https://www.youtube.com/sciencemom">here.</a> These videos are aimed at ages 7-12, but are great for the whole family.<br />
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* <a href="https://www.youtube.com/user/Peekaboo/featured">Dr. Binoc's Show</a> on You Tube has lots of educational videos for older kids, as well as nursery rhymes and learning videos for little ones.<br />
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*<a href="https://mysteryscience.com/school-closure-planning"> Mystery Science</a> is offering a collection of science lessons and activities for k-5 students. These are separated by grade level and the topics are high interest. Many have written activities to accompany them.Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1tag:blogger.com,1999:blog-8909433475631627375.post-88170088738877366812020-03-14T19:40:00.001-04:002020-03-14T19:40:15.236-04:00Educational Resources During Your Corona BreakWhile being on an extended break with my kids and being responsible for their learning isn't that big a deal to me because I do this for a living, I recognize that not everyone is a teacher and isn't able to come up with educational things for their kids to do each day. No one wants their kids to just play video games and watch TV all day! I figured I would share some things I have found that would help others while their kids are at home.<br />
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All of the websites I will share are free or just require a free registration! Unless otherwise noted, I have checked these links for viability. I hope you find these helpful. Please let me know how you use the activities!<br />
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* First, let me say that writing should be a part of just about everything you do. If your child does a science experiment, have him/her write claims and evidence about the experiment. If you explore an online museum together, have children share about three of the most interesting exhibits. Writing is key! <br />
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*<a href="https://www.travelandleisure.com/attractions/museums-galleries/museums-with-virtual-tours?fbclid=IwAR0GDHeYUBuxnaTA7cwX_M8BlAAi9fOrtJVI232nbT97oSFPreCQQFGgdy0">Here is a list of museums</a> that offer virtual tours. My kids love museums (especially Caleb), so I know we will be checking some of these out!<br />
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*<a href="https://www.storylineonline.net/?fbclid=IwAR1szvzJTozlroFO5xv4V79RgbiNMQaCrumT_3HUyOfNFT_wOX7ZD5J3BUc">Storyline Online</a> is a website where celebrities read picture books! I love this! You can also search on Youtube for TONS of online picture books.<br />
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* <a href="http://en.childrenslibrary.org/">This is an online library</a> where kids can read books online. Many are in multiple languages!<br />
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*<a href="https://classroommagazines.scholastic.com/support/learnathome.html">Scholastic </a>is well-known for its book fairs, but they also have lots of online resources too. Scholastic has put together a bunch of articles and videos about nonfiction topics. These articles include lots of text features like graphs, photographs, diagrams, bold print with links to vocabulary, etc. There is also a suggested activity at the end of each one and some extension suggestions. This is a GREAT resource and spans the content areas. It is even separated by grade band!<br />
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*You can explore the<a href="https://www.metmuseum.org/art/online-features/metkids/explore"> Metropolitan Museum of Art too!</a> This isn't included in the other list, but I liked that it was specifically geared toward kids. <br />
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* <a href="https://kidsactivitiesblog.com/135609/list-of-education-companies-offering-free-subscriptions/?fbclid=IwAR2YmvCi1esgGMmgXNvx46NUmBYQTlmNTKGedWcwN5SJV6vnIpi3-vZ0U_Y">This is a link to another blog</a> where she has a list of educational websites that typically require a paid subscription. You do still have to register, but these websites are temporarily offering a free subscription during the Corona break. Disclaimer: I have not checked all of these individual websites myself, but wanted to pass the info along.<br />
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*<a href="https://www.howstuffworks.com/">How Stuff Works</a> is a pretty cool website where kids can research ALL KINDS of stuff! <br />
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* If you have a child studying another language, <a href="https://www.duolingo.com/">Duolingo</a> is a great way for them to practice. They can also search on Youtube for Spanish picture books and beginning Spanish lessons.<br />
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*<a href="http://www.khanacademy.org/">Khan Academy</a> is something that is often used in the secondary schools. Our county typically uses it for math practice, but it actually spans the content areas. <br />
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* <a href="https://www.highlightskids.com/">Highlights Kids</a> has great activities, videos, and articles for young learners.<br />
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* <a href="https://www.roomrecess.com/">Room Recess</a> has tons of learning games across the curriculum!<br />
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* <a href="https://mrnussbaum.com/">Mr. Nussbaum</a> has SOOOOO many resources! You can play games across the content areas, research lots of topics, and check out a variety of grade levels!<br />
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* <a href="http://studyjams.scholastic.com/studyjams/index.htm">Study Jams</a> by Scholastic has animated videos on a variety of math and science topics. Many of them are in song too, which the kids like! Many also have quizzes to go along with the videos.<br />
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* <a href="https://www.mathplanet.com/">Math Planet</a> is for middle and high school math. There are very clear explanations about math concepts, and at the end of each lesson are multiple examples and a video.<br />
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* <a href="http://www.sosmath.com/">SOS Math</a> is another one for middle and high school math. It is similar to Math Planet, but there are also self-checking problems at the end of each lesson! <br />
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* Practice multiplication with <a href="https://www.multiplication.com/games/all-games">these games!</a><br />
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*<a href="https://www.funbrain.com/"> Funbrain</a> is a website with math and reading activities. There are also books to read! This website also has non-educational games, so you might need to focus your child. :)<br />
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*If you have Pinterest, you can check out my <a href="https://www.pinterest.com/germanjuls/corona-virus-boredom-busters/">Corona Virus Boredom Busters board! </a> There are some good lists on there, as well as lots STEM activities and LEGO challenge cards. My kids absolutely love LEGO challenges, and we use the same ones over again because they always come up with something new. <br />
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*If you have Netflix, you can watch an episode of "Who Was" (biographies about famous people in history) and then have kids research it further.<br />
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*Have your kids research! They love doing this!! They can learn about a holiday around the world, the history of a company, a country, an animal, a time in history...the possibilities are endless! Remember that writing piece though! :) They can make a Power Point about the topic, which is a fun way to incorporate the writing. <a href="http://wonderopolis.org/">Wonderopolis</a> and <a href="https://www.ducksters.com/">Ducksters</a> are kid-safe research sites.<br />
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*They can write a letter to a family member. Handwritten letters have gone by the wayside and I think this is the perfect time to bring them back. They can write emails too, but I kind of like the idea of a handwritten letter.<br />
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Have them make up a learning board game! You can easily print out a template <a href="https://www.template.net/design-templates/printable-game-board/">(here are 8 different ones to choose from!)</a> and then they can make a game about just about any topic!<br />
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Kids can write in a journal every day. Make sure they are writing at least 8-10 sentences, and have them check carefully for spelling, capitalization, and punctuation.<br />
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They can learn a secret code or make up their own! <a href="https://learnincolor.com/secret-spy-codes-for-kids.html">Here is a link</a> to seven different secret codes.<br />
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Older kids can read a newspaper article and summarize it. If you don't get a newspaper delivered, they can read current events <a href="https://breakingnewsenglish.com/">here</a>. There are also video clips for many.<br />
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If you want your child to learn about history,<a href="http://www.digitalhistory.uh.edu/"> check out this website! </a> <span style="background-color: white; font-family: inherit;"> It</span><span style="background-color: white;"><span style="font-family: inherit;"> features a U.S. history online textbook, tons of history documents and primary sources, a database of research websites, and a collection of speeches by famous people in history that you can listen to. </span></span><br />
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Make a timeline of your family! This could include birth dates and important dates/events. They could even print out pictures to add to the timeline.<br />
<br />Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com2tag:blogger.com,1999:blog-8909433475631627375.post-82176005416637177182020-03-07T10:39:00.000-05:002020-03-07T10:39:25.860-05:00The House is So QuietWhen I wake up in the morning,<br />
I automatically look over to see if you are in your bed.<br />
But you're not there.<br />
I get myself ready, then go downstairs to make coffee.<br />
I call for you to go out, not even remembering that<br />
You are gone.<br />
The house is so quiet.<br />
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When I get home from work,<br />
Reality smacks me in the face<br />
When you aren't there to greet me with your whippy tail.<br />
I subconsciously glance out onto the deck<br />
To see if you are ready to come back inside.<br />
But no one is waiting at the door.<br />
The house is so quiet.<br />
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There's a chill in the air,<br />
So I turn on the fire and look to see<br />
If you are in your favorite seat in the house.<br />
But it's empty.<br />
You loved that fire.<br />
I sit in your spot and cry.<br />
The house is so quiet.<br />
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Daddy cleans up some toys in the playroom<br />
And the squeak of the wheels of a car<br />
Sends him sobbing.<br />
Why?<br />
Because it was the last thing you reacted to<br />
Before you were gone.<br />
The house is so quiet.<br />
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Night time is the hardest for the kids,<br />
When the day is over<br />
And they are lying in their beds.<br />
That's when the tears come,<br />
Because their friend, nurse, therapist, cuddle bug, and sister<br />
Isn't there.<br />
The house is so quiet.<br />
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There are a million things that make me think of you<br />
Because you are everywhere in this house.<br />
For six and a half years, we have loved you.<br />
But it doesn't stop here.<br />
A piece of our hearts was buried with you<br />
And we will love you forever.<br />
But the house is so quiet.<br />
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<br />Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com2tag:blogger.com,1999:blog-8909433475631627375.post-87911947891335669112020-02-23T10:52:00.003-05:002020-02-23T10:52:43.718-05:00An Interview With AbbyEnjoy this little interview with Abby!<br />
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<b>What is your full name? </b> Abigail Elizabeth Joy Leach<br />
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<b>What does your name mean?</b> They all mean Joy except Leach<br />
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<b>What are your favorite toys?</b> Playmobile, Barbies, stuffed animals, and dolls<br />
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<b>What is your favorite color?</b> PURPLE!!!!<br />
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<b>What do you want to be when you grow up?</b> A veterinarian for baby red pandas and a horse rider trainer and a veterinarian for dogs and cats and bunnies and pigs<br />
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<b>What do you like to do when you have free time?</b> I like to play with my Playmobile characters, play with my brother with Legos, and I like to sing and dance, and I like watching my brother singing a song in his play.<br />
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<b>If you could go anywhere in the world, where would it be? </b> Australia because I want to visit the beach and the koalas<br />
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<b>Who are some of your favorite people? </b> My mom, dad, Caleb, Chloe, grandparents, cousins, my aunt and uncle, and Mrs. Danielson<br />
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<b>If you could meet a famous person, who would you want to meet?</b> Idina Menzel because she is Elsa in Frozen and Frozen 2 and she is a really good singer!<br />
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<b>If you could be in any musical, what would you choose? </b> Right now, it's between Seussical and Frozen. If I was in Seussical I would be Gertrude McFuzz. If I was in Frozen, I would be Elsa or Anna or Olaf.<br />
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<b>What are you looking forward to right now?</b> Doing the water balloon and food fight in May!<br />
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<b>What advice do you have for kids who will be going in the hospital?</b> I've learned that if you are going in surgery, that if your mom or dad sings a song to you while you are going to sleep with the medicine, it really helps you stay calm. I've also learned that therapy dogs help me when I'm missing my dog. Child Life therapists help me by bringing toys and crafts to my room.<br />
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<br />Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com4tag:blogger.com,1999:blog-8909433475631627375.post-86559895542757539702020-02-14T20:40:00.001-05:002020-02-14T20:40:39.560-05:00MRI Update<div>Thank you for all of the purple pictures and well wishes! Abby made it through her MRI and we are on our way home now. The mri took 2 hours. The first hour was great. She took a break, went to the bathroom, and then the second half was rough. It probably would have been better if she had just plowed through and not taken a break, honestly. Her back was really hurting and she cried the last half an hour. 😢. But she finished!!</div><div><br></div><div>Here are some pictures from last night and today: </div><div><br></div><img id="id_91a6_657a_21b4_7e0b" src="https://lh3.googleusercontent.com/GZZw7edFGguBZvpyrE0FJzrc9DRoSoJj1beGqQb-KzPI04nUeKH0kFwT1u_jMPQ" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><div>A visit to Carlo’s Bakery</div><div><br></div><div><img id="id_3085_8da7_a766_e919" src="https://lh3.googleusercontent.com/M_ThbgZx6PxbDxvq59OxW0-H7U9f43CgUD7ud-fXTNbxmZwWDiNdmYcuzHpvYU0" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_fb5e_e728_d786_a4b1" src="https://lh6.googleusercontent.com/AjUvsUuaxgHD1IMxgCG2Yo5wupihHDsaP_3Y1_JZofxQuEeJR1DLRXJC4xgrNQ4" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_662f_adec_b16a_d0b4" src="https://lh3.googleusercontent.com/o2kuY1eTomoPWRUP7B5-Zb70RkCQWlDzKUZsQk4P0iift3AAq1i-NiZJ4P5RGqM" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_7ca2_e0bd_13a2_fd4b" src="https://lh5.googleusercontent.com/w_8YvU7MOmTB8OgVoAZGSNRtZoTXjE-uNCMxs3-Up6gtQwKO975N9bGfufTshAg" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><br></div><div> The Stage Door Tour at Radio City Music Hall</div><div><img id="id_ad25_db12_f143_f1be" src="https://lh3.googleusercontent.com/mxJbZxq4NmFboKMAZkRUnRELGtJXuAwy2vPhSV80uaozwKhIsmWG7_078duLlgM" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br></div><div>meeting a Rockette</div><div><br></div><div><img id="id_e069_572e_9742_a397" src="https://lh3.googleusercontent.com/fTbUGXW39j6w9htptSFHsnBnzDocWmhI2X1ri2q6oyjfskyY7jhGaAnPI5Lz5hI" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_c558_a824_a92b_c246" src="https://lh5.googleusercontent.com/znedTM_tAVUJL6915OeoD8XuJFwLhJkw734OH8imGZ5LnrKZ_6ONl9TFT7bcUxo" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br>visiting the AG store</div><div><br></div><div><img id="id_7ef0_ea3c_7b6d_f814" src="https://lh3.googleusercontent.com/YKmjZtuiVl-gqY5HMGcVxeZ1WG_z8xzcNiGcYvvycMvq9YgjmU8D-_HSSEWD-cc" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_6c19_c4d3_a5b7_bf0e" src="https://lh4.googleusercontent.com/EWymTr6KTtMQia60mlOgk5huo5pLfMzjaF9vozS9JNk2ATfW4WyabpNL-u1B1rA" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_f266_6ba1_3bac_77a" src="https://lh3.googleusercontent.com/kY9sDw7XC-zl9f3dSZSvL8XWeNpeVZzzDaOhliF1QgqCsxwQcZENehC12HEN-iA" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_3759_3afd_fc85_3645" src="https://lh5.googleusercontent.com/nop5cNXSaVuRNuWzMLRMmsm6LrIMMeQonxxu4-kaNkbUeqU6QqwuOk5AliOy0_g" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br>having fun at a Valentine’s Day party at the hospital</div><div><br></div><div>I totally forgot to take a picture, but we also finally got to meet another VEPTR mom friend who lives in NYC! She is the sweetest and brought Abby a big basket of treats, which made her day!</div><div><br></div><div>We are grateful for your prayers and grateful to be going home!</div> Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com3tag:blogger.com,1999:blog-8909433475631627375.post-92020411447194667182020-02-13T17:45:00.001-05:002020-02-13T17:45:26.383-05:00CHONY TourWe drove up to NYC today, dropped off mountains of Abby’s medical records at the Spine Hospital, and then headed to CHONY. We scheduled a tour of the hospital with child life to learn about the hospital and help Abby to feel more comfortable. She was worried about CHONY being different than CHOP, but is feeling much better now!<div><br></div><div>The hospital has playrooms and we have access to all of them—not just the one on our floor! There’s foosball and air hockey too, so she was excited about that. She will have her own room, which also has a mini fridge in it. That is very exciting for me!! The rooms are pretty much what we are used to, so everything looked more familiar than she thought it would be. The cafe on the first floor is pretty tiny, but I think Door Dash will work fine. </div><div><br></div><div>There’s a Valentine’s Party tomorrow on the main floor that we should be able to go to for a little while. They have lots of special events, and just this week an acting troupe AND students from Julliard performed! So there will be plenty to entertain her!</div><div><br></div><div>And she got a new friend!</div><div><img id="id_726e_bfce_62b_30cd" src="https://lh4.googleusercontent.com/LjZyg-yicJyJV8WFP_yO0GtD8dgssSvLPD81cfjHkpJGAjLoT7zxZurpdDsi32A" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><br></div>Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1tag:blogger.com,1999:blog-8909433475631627375.post-66008021499885424272020-02-12T21:56:00.001-05:002020-02-12T21:56:36.994-05:00NYC BoundTomorrow, we will head to New York to CHONY. We have a tour of the hospital scheduled in the afternoon and need to hand over the MASSIVE amounts of medical history CHONY needs from CHOP! On Friday, Abby has a CT scan and an MRI. <div><br></div><div>Until today, we thought Abby would be doing the MRI under anesthesia. During my pre-op phone call with the nurse, they didn’t like that Abby had recently been on an antibiotic for lung issues. She wasn’t sick—it’s just the way her lungs our. Our pulmonologist said she was fine for the MRI, but CHONY didn’t want to risk it. To avoid the nightmare it would be to attempt to reschedule, Abby will be doing this MRI awake. </div><div><br></div><div>She did it awake once before out of necessity (long story, but she couldn’t be intubated). It was NOT pleasant, but she did it. Please pray that all goes well. We have music and I’m going to read aloud to her. We are also hoping Child Life will have some tricks. If she can’t do it, we will have to come back and do it under anesthesia. Please pray that she can!</div><div><br></div><div>We are also hoping to squeeze in a little bit of fun so that the trip isn’t all horrible. </div><div><br></div><div>Thank you to the overwhelming number of you who purchased shirts!! It was amazing and we are grateful! Friday would be a fantastic day to wear it! 💜</div>Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com0tag:blogger.com,1999:blog-8909433475631627375.post-415028749313420922020-01-27T08:40:00.001-05:002020-01-27T08:40:52.789-05:002 More Days Left!A huge THANK YOU to all of you who have purchased shirts to show love to Abby and support our family! If you would still like to get a shirt, the sale will end Tuesday evening. There are tshirts, sweatshirts, long sleeved shirts, tank tops, and youth sizes available. Shirts will begin shipping on February 5th.<div><br></div><div><a href="https://www.bonfire.com/we-choose-joyabby-joy/" id="id_e750_ec3c_eec9_8e5e">Click here to choose a shirt style.</a><br></div><div><br></div><div>Thank you so much for loving us! </div>Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1tag:blogger.com,1999:blog-8909433475631627375.post-45590559997256945212020-01-22T10:55:00.002-05:002020-01-22T19:46:59.027-05:00Notes to the Younger MeI often think back on my life and realize how God has prepared me for so long to be a special needs mom. During last night's insomnia, I was thinking about what I would say to a younger me.<br>
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17 year old me, it's not by accident that you are working with that student with special needs and a trach each day as a guidance office assistant. God is exposing you to trach life and allowing you to see how much more there is to a person than his or her special needs. You are able to see that having a trach is just another way to breathe, and it's not as big of a deal as it seems. You will draw upon that often in the first few years of Abby's life.<br>
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Young, married, pregnant with your first child me, you sat on your old couch one night in your tiny little house and told Matt that you felt like God had called you to be a parent of a child with special needs. You didn't know what that meant at the time and wouldn't for nearly four more years. Matt will remind you of this conversation when you receive Abby's prenatal diagnosis.<br>
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To the me sitting in the chair next to your husband talking with the neonatologist for the first time at University of Maryland Medical Center, this is just the beginning. Receiving that Pierre Robin Sequence diagnosis is the start of your new life. You will never forget the doctor's warning that there could be more to her diagnosis and we really wouldn't know until she is born. <br>
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Me sobbing in the middle of the night next to a two-day-old Abby struggling to breathe, I see you. I know how terrified you are. You will cling to the words of hope that angel Nurse Megan gives you. You don't know what the next day holds, but you know that you gave your girl the middle name of Joy for a reason. <br>
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To the me surrounded by a mountain of medical supplies that you have no idea what to do with on Abby's very first day home, I know you are feeling overwhelmed. Just the idea of leaving the house makes you want to scream. You don't even know what half of these supplies are, but you will. You will become an honorary doctor, nurse, respiratory therapist, physical therapist, and occupational therapist for Abby. You've got this!<br>
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Me holding a four year old Caleb as he cries, "How long will we have her?" your heart just broke into a million pieces. You already knew your boy was wise beyond his years, but the fear and heartache Caleb is carrying wrecks you. You begin to get glimpses of the anxiety that plays a key part in his personality and learn more about what he needs in order to feel secure.<br>
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IEP warrior me, you are ready to do battle to get what Abby needs in order to be successful in school. You help school officials to see that sometimes they just have to think outside of the box. You are incredibly thankful for the support of the SLES staff and their willingness to go the extra mile. When you learn that Abby's one-on-one will be Mrs. Danielson, you know that she will be wonderful. Girl, you had no idea! That woman is amazing and you will be SO grateful for her in the coming years!<br>
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Me holding the Make a Wish application and questioning whether we really "qualify" for this, YES YOU DO! There's a stigma with Make a Wish that makes others think Abby is near the end of her life, but get over that super quick. Enjoy every second of that trip, because you will need those beautiful memories to get you through the rough times in the next year. Be thankful that you took that trip when Abby was at her healthiest and able to enjoy it to its fullest.<br>
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Anxious me having my first big panic attack in the car, triggered by the thought of germs around a fragile Abby, you <i>will</i> get through this. Do your grounding technique, get yourself a fidget, take a few puffs of your inhaler, repeat a Bible verse about anxiousness, and ride it out. This will be your first of many, but you will eventually learn how to feel one coming on and will usually be able to address it before it gets out of control. <br>
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Present day me, I know you're feeling overwhelmed again. Just look back at all of these other times when God has carried Abby through a difficult time. You thought it was too much then too, but you made it. God will give you grace for the moment just like He has every other time. He will take care of Abby now, because He loves her even more than you do.<br>
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<br>Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com5tag:blogger.com,1999:blog-8909433475631627375.post-5917087817998544522020-01-21T10:48:00.001-05:002020-01-21T10:48:54.813-05:00Fun Weekend!This weekend was pretty fun and busy! Matt took a group to <a href="https://urbanhope.net/" id="id_72bf_e6eb_a80f_18cf">Urban Hope</a> this weekend, so it was just the kids and me. <div><br></div><div>On Friday night, my parents and my nephew went with us to do an activity hour at RMH. We decorated winter picture frames and snowman door hangers and had a hot chocolate bar set up. Everyone seemed to enjoy it, although we had a small crowd. Usually, people come out of the woodwork for the hot chocolate bar!</div><div><br></div><div>Saturday was a Raddish cooking day that ended up not going as planned. I sliced my thumb using a slicer for cucumbers. After much deliberation, I decided I didn’t need stitches. I probably should have gone, but I didn’t feel like dealing with it. Thankfully, I have a plethora of wound care supplies and have been dutifully caring for my thumb twice a day. We managed to complete the meal and had a delicious Swedish inspired dinner. </div><div><br></div><img id="id_a9f5_fcbc_1d85_241" src="https://lh5.googleusercontent.com/lWO78rFdDHo1Ii_d9A_r64b6GYfrj-ZT_21LXOdpfclsCdVemkfu62r9mJA" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><img id="id_d63_a3a4_25d5_2589" src="https://lh6.googleusercontent.com/57rxtYzMlVZH8g6PnNybNR3L9OAB8Sptcmnn1exUmRE3zMI152ahRg9jrcA" alt="" title="" tooltip="" style="width: 392px; height: auto;"><br><br><div> My niece and Caleb also got together to work on some lessons for Fellowship of Christian Athletes. They have really taken on a bigger leadership role this year and I’m so proud of them! </div><div><br></div><div>Abby and I avoid church during the winter due to germs (I guess people think it’s okay to bring their sick kids to God’s house?!), so since Matt wasn’t here, Caleb stayed home too. They had friends over in the afternoon, which they both loved! We watched a middle school’s performance of Seussical Junior that evening as research! It was very helpful!</div><div><br></div><div>Matt came home Sunday night, so the boys worked in the yard on Monday while the girls did some inside chores. Then we all cleaned out the garage together, which was desperately needed! The evening was spent playing games and the kids both did some math practice. </div><div><br></div><div>It is SO nice to have the extra day off once in a while! I wish we had it more often!</div>Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1tag:blogger.com,1999:blog-8909433475631627375.post-166915435176891102020-01-15T13:00:00.000-05:002020-01-15T13:00:05.809-05:00Child Life TourMy days off are filled with phone calls, emails, looking for housing (but not anymore!!), and locating medical records these days! Yesterday, I was able to talk to a Child Life Specialist at CHONY about the possibility of getting a tour of the hospital when we are there for Abby's MRI. Abby is still very anxious about switching from CHOP. Honestly, she seems much more worried about that than she is about the surgeries or halo! <br />
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Child Life is amazing in general, so I knew that I could get some help if I reached out. This specialist was so sweet and happily scheduled a tour for us. She even asked for some info about Abby so that she could personalize it to her needs and interests. She also let me know that they are very familiar with working with kids with halos and will make sure she has plenty of fun while she is there. <br />
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Another nice thing is that this Child Life specialist who will give us the tour will also be the one who will be with Abby during pre-op and post-op, so there will be some continuity. It will be nice to have a familiar face when we get there for surgery.<br />
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I told Abby about the tour last night and I could see the stress immediately lessen! She was thrilled that she would get to know the hospital a bit and meet some people. <br />
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We are so thankful for Child Life! At times, they have been our saving grace during long hospital stays! If you aren't familiar with Child Life, this is a quick video that gives a glimpse into some of what they do. <br />
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<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/G1Pp3yespPQ" width="560"></iframe>Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1tag:blogger.com,1999:blog-8909433475631627375.post-30647207131161923172020-01-14T11:06:00.000-05:002020-01-14T11:06:00.020-05:00The Housing Crisis is Over!Thank you so much for all of you who have helped us to find affordable housing in New York City! I tell you what, this was TOUGH! Most rentals were going to cost us over $10,000 for the time we were going to be there, and that's just not doable when we already have a mortgage to pay! <div>
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After a lot of number crunching and weighing the pros and cons, we realized that the amount of time Matt is going to actually be up there does not warrant paying for an apartment for 3 months. While it would be nice to have a stable "home," it just isn't financially responsible. </div>
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So we started looking at Air BnBs that we could rent for just the times he would be there. That was also a challenge because the vast majority would only refund 50% of your total cost just 48 hours after booking! Since he doesn't really know when he will be there for sure, booking this far in advance is hard. We do know two dates that he will be there, so we were trying to go ahead and book those. One of our requests got rejected (I guess they didn't like the look of us?!?!)</div>
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In the meantime, I found out that there are a few rooms that are available for families in this building that is attached to the main hospital. It is not part of CHONY, but is on the same campus and you can get from CHONY to it without having to go outside. It's where the rich and famous stay when they are in the hospital, so I didn't think that they had any rooms for family members--but they have 7! These rooms are just basic hotel rooms, not the swanky rooms that the famous patients get. But I'm really hoping that I might get a glimpse at someone famous, or even just a body guard?! :)</div>
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The rooms are reasonably priced--at least by NYC standards--and the price does not fluxuate. This is a huge benefit! There is also no tax or hidden fees on these rooms, so we know exactly what we will be paying. The BEST thing about it is that we were able to book from May until the beginning of August and can cancel whatever days we don't use WITH NO PENALTY!! She said they always have a waiting list since there are only 7 rooms, so there will be no problem filling them. Matt can just tell them when he is ready to check out what day he will be coming back. He can't keep stuff there, of course, but he is perfectly fine with that. She said because they are connected with the hospital, they understand hospital life and the need for flexibility. I booked everything today and felt instant relief!</div>
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What a huge answer to prayer!! We are so relieved to have a place to stay! Again, thank you to all of you who helped us. We really appreciate it!</div>
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Abby has an MRI and CT scheduled at CHONY next month. I attempted to get them done at Hopkins, but things are much more complicated with a difficult airway. Abby must be intubated for the MRI and there are always risks when you have a difficult airway. A "simple" MRI isn't simple and it's even more difficult when the surgeon requesting it isn't at Hopkins. That, coupled with the fact that they were scheduling into March, made me decide to go ahead and do it at CHONY. This will also give us a chance to work with CHONY anesthesia and ENT during a relatively "simple" procedure before any big surgeries. It also gives us a chance to get to know CHONY a little bit.</div>
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I tried to get a room at McKeen for this one night stay, but they are booked. I put our name on a cancellation list, so we will see if we can get in. Maybe others have done what we did and will end up cancelling! I would love to get a feel for the area before we are there for the long haul. </div>
Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1tag:blogger.com,1999:blog-8909433475631627375.post-61623254939117991812020-01-13T17:00:00.000-05:002020-01-13T17:00:06.617-05:00In the Best of HandsIf you are interested in learning more about Abby's spinal surgeon, I am including a few articles. He truly is brilliant and widely known as one of the best spinal surgeons in the world. He only takes the most complicated pediatric cases, and I'm left with mixed emotions that he accepted Abby's case! All of this is just a tad bit terrifying! Regardless, we know we are in the best of hands.<br />
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<a href="https://spinal-deformity-surgeon.com/about-dr-lenke/top-reasons-to-choose-dr-lenke/">Top Reasons to Choose Dr. Lenke</a><br />
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<a href="http://spinal-deformity-surgeon.com/standing-tall-one-teens-transformative-spine-surgery/">Article About a Teen Who had a Vertebral Spinal Resection</a><br />
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<a href="https://www.cnn.com/2018/10/26/health/scoliosis-surgery-john-sarcona-profile/index.html">CNN Article About a Teen With a Similar Degree of Kyphosis as Abby</a><br />
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<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/R8-_8Hazg4Y" width="560"></iframe><br />
Interview with Dr. Lenke<br />
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<br />Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com2tag:blogger.com,1999:blog-8909433475631627375.post-92163119705381147202020-01-09T13:33:00.000-05:002020-01-09T13:33:16.426-05:00Go Purple for Abby!My sister made these wonderful shirts as a way to allow people to show support for our family. We asked people on Facebook for a word they would use to describe Abby, then my sister used the description to make a heart. Aren't they awesome?! <br />
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If you are interested in purchasing a tshirt, you can <a href="https://www.bonfire.com/we-choose-joyabby-joy/?fbclid=IwAR2oIs8-_XdbYO8qaL1EaDnUknnevQliYVUiaIITsbDKqPvyGi_AzMDY_EM">click here</a> to get to the website. There are several different styles to choose from! Included on the page is information about how we will be using any funds raised through tshirt sales. Thank you so much for loving our family!</div>
Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com2tag:blogger.com,1999:blog-8909433475631627375.post-222617849520279812020-01-09T13:25:00.000-05:002020-01-09T13:25:21.300-05:00A Letter to My SonDear Caleb,<br />
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13! A teenager!!! Wowsers!!! How the heck did you get so old?? (I'm not old though, mind you. Just you. Don't forget that!) It seems like just yesterday you were the little guy with an amazing vocabulary! <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEN94RMZgyb46YZomxH98UXu1rv-3hQGzU_46d9hwJ8Ioua3pr6m0-4GBl3-MdMcZMWF3Zk0b3b17qPhfH0-OI1GPeOrEftMUIBwtYnJVCV_fk-PPW60ZHxAyvAfpLPXeFlpn909SfZkg/s1600/caleb+3+4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="720" data-original-width="540" height="320" id="id_da68_1e01_8185_9e6d" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEN94RMZgyb46YZomxH98UXu1rv-3hQGzU_46d9hwJ8Ioua3pr6m0-4GBl3-MdMcZMWF3Zk0b3b17qPhfH0-OI1GPeOrEftMUIBwtYnJVCV_fk-PPW60ZHxAyvAfpLPXeFlpn909SfZkg/s320/caleb+3+4.jpg" style="height: auto; width: 240px;" width="240" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpFWYcb5oGJnI8ZohealKXhhmM-y3P6QO_bL7YzkBEjdNF5Qczr8Dn5Sryo5y0i_EEnvvAb71WQ1NTIEfGaZSP4pbtwFbEcfHlcev8BzCZfg_2J9K2FTP-3v8M9fc1qjq0WBgrTAKiimw/s1600/caleb+3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="540" data-original-width="720" height="240" id="id_888b_2b01_5c8a_fb51" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpFWYcb5oGJnI8ZohealKXhhmM-y3P6QO_bL7YzkBEjdNF5Qczr8Dn5Sryo5y0i_EEnvvAb71WQ1NTIEfGaZSP4pbtwFbEcfHlcev8BzCZfg_2J9K2FTP-3v8M9fc1qjq0WBgrTAKiimw/s320/caleb+3.jpg" style="height: auto; width: 320px;" width="320" /></a>Now you are a much bigger guy with an even more amazing vocabulary!<br />
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This has been a good year for you, Buddy. You have done a lot of growing up and are figuring out who you are in this world. Your life is filled with music and theater, which makes you so happy!<br />
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Your schedule is just as full as anyone who plays a sport! I love watching you up on the stage because I know how much you love theater.<br />
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Listening to your sing your songs as Horton puts a huge smile on my face. I can't wait to see the finished product!<br />
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You are SUCH a smart kid--sometimes too smart for your own good! Ha! You absolutely love getting lost in a book and have so much knowledge about so many subjects!<br />
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Your most recent interest of quantum physics kind of baffles me, but as long as your happy! It doesn't take long for people to realize how smart you are, and I know you are going to make an impact on this world!<br />
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One of my favorite things about you is your compassion for others. You have a heart for the people around you and genuinely care about them. You are learning valuable leadership and serving skills through Fellowship of Christian Athletes and you are starting to recognize how your actions affect how people see Christ through you. This is a valuable lesson and I pray that you continue to point others to Christ.<br />
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Thank you for being a fantastic son and brother. We love you so much!! Happy birthday!<br />
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Love,<br />
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Momma<br />
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Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1tag:blogger.com,1999:blog-8909433475631627375.post-48500540407649601422020-01-06T21:49:00.001-05:002020-01-06T21:49:41.005-05:00ProcessingThank you to all who have reached out to us. We really appreciate your sweet comments, and especially your prayers. After Abby was accepted as Dr. Lenke's patient, we prayed that there would be a clear decision about what to do next. That prayer was definitely answered, even if it wasn't what we had hoped for! <br />
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The last few days have been filled with processing, researching (shocker!), questions, and discussions. Abby is definitely processing and is much more aware this time around. She is nearly 3 years older than she was in her last surgery, and she has some big feelings. We are helping her work through them and giving her the space to share her thoughts. She has also started writing in a journal, which I think will help her to process. It seems like more and more things pop up that she is going to miss because of being in the hospital, and each time brings fresh tears.<br />
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We have learned quite a bit about the hospital and the surrounding area. It seems that the hospital has many of the same programs for kids as CHOP, so that was a relief for Abby. The resources for families aren't quite as great (there are only 2 washers and dryers for the whole hospital, and there's no cafeteria in the children's hospital), but we will make do. <br />
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Our biggest concern right now is securing reasonable housing, because everything in New York is just SO expensive. Hotels, parking, and tolls are going to kill us! I have some friends putting some feelers out and we are so grateful. We booked our hotel for the first week because it is during graduation time and many were already booked solid. After that...not so sure! The Ronald McDonald House is a good 20 minutes away and the priority goes to families of kids with cancer. It did not sound like we had much of a chance of getting in there, and the distance would still be an issue. (They also don't have any free parking, so we would have to pay probably $30 a day--or more--to park!) I will typically be staying with Abby at the hospital, but having a place close-by that I could walk to to take a break when Matt is in town would be so helpful. If you know of anyone that has a studio to rent for a reasonable price, please let us know! We really don't need much!<br />
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Abby is staying home from school for a few days while the germ situation is assessed. She also has been showing symptoms of another lung infection, which is an ongoing battle in lung failure. Her pulmonologist put her on antibiotics in hopes of catching it early. Abby is participating school via her robot Celia. My parents were able to come down today to stay with her so that I could go to work. They are the best!!<br />
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I have hesitated to share this picture because it's pretty overwhelming, but I also think it's a very real image of what we are dealing with here. <br />
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This is a CT profile image of Abby's spine. The curve is just out of control. Dr. Lenke measured it at 108 degrees, but he thinks that is a conservative measurement because some hardware is in the way. He estimated the curve was more like 120 degrees. The black space inside of the curve is her tiny little lung getting crushed by her spine. Her spine cord is also compromised by this curve. Dr. Lenke compared her head to a bowling ball, and it's just weighing everything down. That is pretty obvious in this image, even if you aren't familiar with CT scans. Her scoliosis has also gotten worse from all of the stress from the kyphosis, so it is at a 60 degree curve now. <br />
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Here are a few things you can specifically pray for:<br />
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1. Abby can stay healthy and out of the hospital.<br />
2. The germs at school are at a minimum so that Abby can go back to school.<br />
3. We can find affordable housing for our stay in NYC.<br />
4. Abby's curve remains stable until surgery.<br />
5. We can all get restful sleep. 3 a.m. has been a great time to be up worrying.<br />
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Thanks for your prayers! We love you!<br />
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Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com11tag:blogger.com,1999:blog-8909433475631627375.post-59754006822787609972020-01-05T21:54:00.000-05:002020-01-06T21:55:05.557-05:00In Case You Missed It...<span style="font-family: inherit;">My blog app on my phone isn't working right now, which means I can't blog if I don't have access to a desktop computer. I shared this on Facebook and wanted to make sure any blog readers that aren't Facebook Friends with me know what was up!</span><br />
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We went to New York Presbyterian on Friday to meet with Dr. Lenke, who is a world famous spinal surgeon. Many professionals say he is the best in the world. W<span style="font-family: inherit;">e felt like we did the first time we met Dr. Campbell-like we were in the presence of greatness. Dr. Lenke is very similar to Dr. Campbell in his assuredness and knowledge.</span></div>
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<span style="font-family: inherit;">Dr. Lenke said nothing good will come out of the wait an<span class="text_exposed_show" style="display: inline;">d see approach because we know what will continue to happen. Her lungs will continue to decline until we lose our window. He emphatically said that the rib to rib VEPTR is not the right choice for her at this point because her kyphosis is the biggest issue. He said her health is not stable enough to put veptrs in and she would almost definitely need a Trach. The best choice is to straighten the spine as much as possible through halo traction, give her lungs a chance to open up and allow her to breathe easier, and then fuse. He thinks from the images that she won’t grow much more anyway. But getting her straight in traction will give her several inches and her legs will still grow.</span></span></div>
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Halo traction means being in the hospital for probably 2 months before fusing, then going to rehab. He may do additional work to the spine during fusion, depending on the correction he gets from the halo. All in all, we are looking at about 9 weeks in NYC and then maybe another month in rehab.</div>
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He said this was really the best and only successful course of action. I appreciated the definitive answer. We will have consults with infectious disease, ENT, anesthesia, and pulmonary here in NYC to establish a good inpatient team. I told him I am a planner and I don’t like surprises, so I want to make sure everyone is on the same page. He agreed that he doesn’t like surprises either. We need to get an mri, ct, and xrays but those can be done at Hopkins. The halo surgery will happen in May and then the fusion will be in July. We already have dates, which is crazy. We will most likely be in New York through August.</div>
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So.....we appreciate you praying us through these next few months. Our job now is to keep Abby healthy, keep her weight up, and get her body as strong as possible.</div>
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Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com0tag:blogger.com,1999:blog-8909433475631627375.post-53094344700283226892019-12-31T15:44:00.000-05:002019-12-31T15:44:01.782-05:002019 in ReviewThere have been a lot of ups and downs in 2019. While there were some hard times, there was also much to be thankful for. We are forever grateful for both of our children and love watching them develop and grow into who God wants them to be. Here's a little 2019 recap!<br />
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In January, we celebrated Caleb's 12th birthday with a sleepover and tickets to see Charlie and the Chocolate Factory. <br />
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He enjoyed both immensely and is always happy to spend time with his friends. He has a great group of friends who are so much like him that it's scary. While I don't usually understand a thing they are talking about, I love seeing Caleb with his friends.<br />
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February brought lots of doctors' appointments, play rehearsals for The Little Mermaid for Caleb, and ballet lessons for Abby. We also all pitched in to help clean out Mommom's house to get it ready for sale because she was no longer able to live on her own. At the end of February, we went away for a long weekend at Massanutten to go snow tubing.<br />
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In March, we all helped to run an estate sale at Mommom's house one weekend. There were so many memories attached to everything in the house and it was at times hard to watch people scavenging through her things. In mid-March, I flew to Atlanta, GA with a few colleagues for the International TESOL Conference (Teachers of English Speakers of Other Languages). This was an eye-opening experience for me and I learned so much.<br />
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Matt and I celebrated 16 years of marriage on April 3rd. A few days after, we enjoyed Caleb's performance as King Triton in The Little Mermaid.<br />
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We also participated in The Red Shoe Shuffle and were able to stay at the brand new Ronald McDonald House of Maryland! <br />
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It is absolutely beautiful and such a blessing for families in crisis. We celebrated Easter at our house at the end of April, and I won tickets to see Stomp at The National Theater! Caleb and I enjoyed a mother/son date to see it.<br />
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Updated family pictures were taken at the beginning of May, and Matt attended the Men's Retreat with our church. <br />
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Caleb and I attended the Carson Scholar Banquet, where he was recognized for a second year as being a recipient. His cousin Sara is a third year recipient!<br />
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Abby enjoyed participating in an after-school Good News Bible Club with a few friends. This month was also stressful and worrisome as cancer was found in Chloe's jaw.<br />
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June was a busy month for us! Abby performed in her first dance recital at the beginning of June, and it was so sweet to see her dancing on the big stage. <br />
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We limped to the end of the school year, but we made it! 6th grade was really hard on Caleb for a few reasons, and we were never so happy for summer to come! Chloe had a major surgery to remove the cancer in her jaw, but she recovered amazingly and is now cancer-free. The kids attended a wonderful two week theater camp where they performed Shrek Junior! This was Abby's first show and she was certainly bitten by the theater bug! Caleb was Shrek and Abby was The (not so) Ugly Duckling. <br />
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They both had tons of fun learning and performing, and it was really neat to see them on the stage together. Caleb also finally got to see Hamilton at the end of June, and it definitely lived up to his expectations!<br />
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In July, we traveled with my sister's family and my parents to Gatlinburg, TN to stay for a week in a beautiful cabin in the mountains. <br />
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While there, we celebrated Matt's birthday. It was fun to slow down and hang out together as a family. We went to some fun places, but also enjoyed swimming in the cabin's indoor pool, watching movies, putting on a talent show, and playing in pool tournaments. At the end of July, we celebrated Chloe's 10th birthday with a family birthday party that included a cat pinata, bark contests, pin the tail on the Chloe, and lots of hugs with our favorite doggy! <br />
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Abby also participated in the Theater and Arts Camp at our church, which she always loves.<br />
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At the beginning of August, Caleb participated in a fun Middle School Week at church where he had daily activities and Bible studies. Abby saw her pulmonologist and began getting treatment for pseudomonas, a nasty bug that attacks the lungs of people with chronic lung disease. We were able to get a new airway clearance vest for her to help get the gunk out of her lungs, but she certainly didn't enjoy doing it every 4 hours to start! Unfortunately, at the end of August, we had to cut our end-of-summer fun day at the National Zoo short when a series of phone calls to and from our pulmonologist determined that Abby needed to be admitted to the hospital for IV antibiotics.<br />
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We started out September in the hospital while Abby's team made decisions for next steps in her care. We learned through a dynamic lung CT that her lungs are pretty diseased and scarred, so we increased her airway clearance and continued with oral antibiotics once we got home. Unfortunately, Abby didn't get to start school right away like Caleb did. She did home hospital for the first month or so until she recovered from her latest hospital stay. Caleb had a great start to the school year and was optimistic that 7th grade was going to be much better than 6th! Julie and Caleb also attended a Schenk family reunion in September and it was fun to see relatives that live far and wide.<br />
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In October, Abby was able to go back to school and this thrilled her to no end! She adores her teachers and is so happy to be with her friends. <br />
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Matt spent a week in Nashville, TN for a counseling conference. At the end of October, we celebrated Abby's 9th birthday with an adorable pet party. The girls all had lots of fun learning about taking care of pets from the Humane Society and even got to meet a few live animals!<br />
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November brought lots more doctors' appointments and discussions about the next steps in Abby's treatment. She is a complex case and there's no clear answer. Lots of tears were shed this month. Thankfully, we also had some fun times! Caleb performed in his first All-County Chorus Concert (one of four chosen from his school) and Abby got to see Aladdin on stage as a birthday gift. We all were thrilled to go on our much-anticipated trip to Disney World over Thanksgiving! It was a fun trip and it came at the perfect time.<br />
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December proved to be a busy month as we wrapped up 2019! Abby got her new wheelchair and she can now drive herself. We participated in a Christmas parade with Abby's 4H dog club and got to bring Chloe with us. Caleb auditioned for the Seussical and earned himself the lead role of Horton! I will be choreographing the show, so the first few months of 2020 will be very busy for us! Santa sent us an early Christmas gift to see Sponge Bob the Musical in Philadelphia, which also happened to fall on my birthday. It was a fun way to celebrate. <br />
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Caleb received an early birthday gift of tickets to see Jesus Christ Super Star with Matt (can you tell we are theater people?!?!), which they both thoroughly enjoyed. The days surrounding Christmas were spent with lots of family, and we finished out 2019 with Abby's first piano recital!<br />
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It has been a full year filled with many adventures, tears, prayers, and thank yous. As we look toward the new year, we are hopeful that 2020 will give us more answers to Abby's treatment, lots of opportunities to be together as a family, and more reasons to thank God. Happy New Year!<br />
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Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1tag:blogger.com,1999:blog-8909433475631627375.post-77611501793309708082019-12-30T14:52:00.004-05:002019-12-30T14:52:28.144-05:00Christmas 2019 Recap<div class="separator" style="clear: both; text-align: center;">
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Christmas 2019 was a good one! Our Disney trip was a big part of Christmas this year (hence the Disney pajama pants), and Santa brought tickets to see Sponge Bob the Musical a few weeks early in Philadelphia. But the kids still had plenty to open! A favorite gift was a Star Wars Droid from Santa that the kids could build and program together. We worked on it today and it is pretty cool! <br />
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Highlights for Caleb included: several experience gifts like the DC Auto Show, a tour of DC monuments, The Museum of the Bible, an archery lesson, and a Caps game. He also got a weighted blanket from Nina and Paw Paw that he loves to sleep under and a comfy Harry Potter robe from Grammy and Pop.<br />
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Highlights for Abby included: lots of great new books, a big slime kit with all kinds of mix-ins, and several LOL dolls. She also got new Playmobil sets from Nina and Paw Paw and Grammy and Pop, so she pretty much has a whole town that she can make stories up about!<br />
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The kids have enjoyed lots of family time at home as we try to avoid catching the flu that has taken over our area. They don't seem to mind at all though, because they have had lots of fun playing with new toys and getting in that precious video game time that they don't usually have when school is in session.<br />
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As always, we were thankful to be home for Christmas instead of in the hospital. Having spent 3 Christmases inpatient, we know all too well how hard it is on a family to be in that situation and we don't take for granted that we are home together. <br />
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The week between Christmas and New Year's has included visiting with both sets of grandparents and both great-grandmothers, hosting an activity hour at The Ronald McDonald House, attending a 50th anniversary party for my aunt and uncle (just Caleb and me so that Abby could avoid germs), Matt and I volunteering (separately) at Safe Nights at our church, and Abby performing in her first piano recital.<br />
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We are extending our break just a little bit longer, as Abby has appointments in New York City on the 3rd with a new specialist who we are hoping will have some good insights on Abby's spine. He is THE surgeon to go to and only takes the most complex cases. I'm not thrilled that Abby falls into this category, but we are grateful that he has taken her on as a patient. We will go up as a family on the 2nd and stay until the 4th. We wanted to make sure that we were able to do something fun while we were up there so that it wasn't just all medical, so we will be visiting the Museum of Natural History and enjoying The Radio Center Music Hall Rockettes' Christmas Spectacular! The kids are excited, which makes the tough stuff a little more bearable. Of course, we will continue to be vigilant about germs with masks and hand sanitizer.<br />
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We hope you all had a wonderful Christmas celebrating the birth of our savior!Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com0tag:blogger.com,1999:blog-8909433475631627375.post-68466102636807431762019-11-14T20:00:00.000-05:002019-11-14T20:00:06.269-05:00Peace<div class="separator" style="clear: both; text-align: center;">
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This is my new shirt and it has never been more true. The last few days have been filled with phone calls, paper work, scanning documents, and faxes. We have prayed about our decision, talked to Abby's pulmonologist, weighed the options, and cried. There's no great answer, and our pulmonologist recognized that. She was quick to acknowledge that we have had to make hard decisions for Abby before and we have always made the right one. She did echo a lot of our concerns and validated our feelings on the options, which helped us to make a decision.<br />
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1. We are going to meet with Dr. Lenke at Columbia University Hospital in New York City. There was a 14 page application (yes, I said <i>application</i>) and I had to request all of Abby's medical history related to her spine, as well as her most recent CTs, MRIs, and Xrays be sent to them. Once all of that is received and reviewed by Dr. Lenke's team, they will decide whether or not they will accept Abby. If we are able to get an appointment, we will discuss the possibility of a VCR in the future and what he feels will be the best long-term approach for Abby.<br />
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2. In the meantime, we are going to have Dr. Anari put the rib to rib VEPTR back in. We are hoping for sooner, rather than later, because our pulm is not thrilled about her being in the hospital during flu season but feels we shouldn't wait until after flu season is over. CHOP has told us that they won't schedule her for surgery until after they meet with the Center for Thoracic Insufficiency Syndrome team (CTIS) at the end of November. I'm not sure why that really matters, but they assured me that they can get her in sooner than the next available if it is needed. <br />
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We have talked to Abby about the 3 options and she actually said that waiting hasn't worked for us so far and she's not ready for the VCR, so there's really only one option. Let's get that VEPTR back in!! I love that girl. She knows she needs it.<br />
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For now, we are waiting on a surgery date and looking forward to our upcoming trip to Disney World!! There was never a better time for a vacation. Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com0tag:blogger.com,1999:blog-8909433475631627375.post-74897434277230930662019-11-14T12:03:00.001-05:002019-11-14T12:03:53.134-05:00Yes, I Will<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/NrTv39-lG4M" width="560"></iframe><br />
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I love this song. This is what I strive to do. I'm far from perfect and the scratches on my hand from a panic attack are a visible reminder that sometimes my anxiety gets the best of me. The last few days have been tough, but today is a new day. <br />
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<br style="background-color: #ddddee; box-sizing: border-box; font-family: Verdana, Arial; font-size: 13.4px; text-align: center;" />
<div style="background-color: #ddddee; box-sizing: border-box; font-family: Verdana, Arial; font-size: 13.4px; text-align: center;">
I count on one thing<br style="box-sizing: border-box;" />The same God that never fails<br style="box-sizing: border-box;" />Will not fail me now<br style="box-sizing: border-box;" />You won't fail me now<br style="box-sizing: border-box;" />In the waiting<br style="box-sizing: border-box;" />The same God who's never late<br style="box-sizing: border-box;" />Is working all things out<br style="box-sizing: border-box;" />Is working all things out<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Yes I will, lift You high in the lowest valley<br style="box-sizing: border-box;" />Yes I will, bless Your name<br style="box-sizing: border-box;" />Oh, yes I will, sing for joy when my heart is heavy<br style="box-sizing: border-box;" />For all my days, oh yes I will<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />I count on one thing<br style="box-sizing: border-box;" />The same God that never fails<br style="box-sizing: border-box;" />Will not fail me now<br style="box-sizing: border-box;" />You won't fail me now<br style="box-sizing: border-box;" />In the waiting<br style="box-sizing: border-box;" />The same God who's never late<br style="box-sizing: border-box;" />Is working all things out<br style="box-sizing: border-box;" />Is working all things out<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Oh, yes I will, lift You high in the lowest valley<br style="box-sizing: border-box;" />Yes I will, bless Your name<br style="box-sizing: border-box;" />Oh, yes I will, sing for joy when my heart is heavy<br style="box-sizing: border-box;" />For all my days, oh yes I will<br style="box-sizing: border-box;" />For all my days, oh yes, I will<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />And I choose to praise<br style="box-sizing: border-box;" />To glorify, to glorify<br style="box-sizing: border-box;" />The Name of all names<br style="box-sizing: border-box;" />That nothing can stand against<br style="box-sizing: border-box;" />And I choose to praise<br style="box-sizing: border-box;" />To glorify, to glorify<br style="box-sizing: border-box;" />The Name of all names<br style="box-sizing: border-box;" />That nothing can stand against<br style="box-sizing: border-box;" />And I choose to praise<br style="box-sizing: border-box;" />To glorify, to glorify<br style="box-sizing: border-box;" />The Name of all names<br style="box-sizing: border-box;" />That nothing can stand against<br style="box-sizing: border-box;" />And I choose to praise<br style="box-sizing: border-box;" />To glorify, to glorify<br style="box-sizing: border-box;" />The Name of all names<br style="box-sizing: border-box;" />That nothing can stand against<br style="box-sizing: border-box;" /><br style="box-sizing: border-box;" />Oh, yes I will, lift You high in the lowest valley<br style="box-sizing: border-box;" />Yes I will, bless Your name<br style="box-sizing: border-box;" />Oh, yes I will, sing for joy when my heart is heavy<br style="box-sizing: border-box;" />For all my days, oh yes, I will<br style="box-sizing: border-box;" />For all my days, oh yes, I will<br style="box-sizing: border-box;" />For all my days, yes, I will</div>
Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1tag:blogger.com,1999:blog-8909433475631627375.post-55594503525584470722019-11-11T21:22:00.000-05:002019-11-11T21:22:17.666-05:00DecisionsWe went to CHOP orthopedics today and are still reeling from all of the information. I'll do my best to explain everything, but I'm still processing myself. <br />
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When Dr. Anari came in, he didn't beat around the bush. He told us he had spoken with the pulmonologist we saw last week and that it's obvious we are seeing a decline. While the kyphosis looks to be about the same on the xray, there could be subtle changes that could be pushing Abby over the edge, so to speak. <br />
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Then he proceeded to tell us that Abby was one of his top two or three patients in terms of difficulty, complexity of the chest wall, and high risk. Everyone has to be good at something, right? 😒<br />
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He laid out 3 options for us to consider.<br />
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1. This is the most aggressive option. Abby would be put in a halo for several months, then she would go into surgery for a removal of a section of her vertebrae. It is called a Vertebral Column Resection and you can read about it <a href="https://www.columbiaspine.org/treatments/vertebral-column-resection/">here.</a> She would have to be in the hospital for the entire process.This is a HUGE surgery and very risky. It is by far the biggest she has done, and none of them have been a walk in the park. There's a high risk of both paralysis and infection. Dr. Anari encouraged us to go to a doctor in New York City who specializes in this kind of surgery, since he said he only does one or two every few years. I'd heard of this surgeon, but I knew he only took the most complex pediatric patients. Dr. Anari assured us that Abby fell into that category...not sure how I feel about that one. Having this kind of surgery would also mean that Abby's spine would be fused once and for all and she would stop growing. She is currently 45 inches tall. ðŸ˜<br />
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2. The "middle of the road" option. Dr. Anari would put the VEPTR back in on the right side rib-to-rib to pull her chest wall back out on this side. It would be a bigger surgery than her previous VEPTR insertions because he would be dealing with scar tissue and stiffening of the ribs. There is an additional risk of infection because Abby is prone to them--he gave us a 25% chance of having an infection. His biggest concern with this option is that he isn't sure Abby's lungs can handle any kind of major surgery right now. She may not be able to come off of the vent after surgery because her lungs will be too weak.<br />
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3. The conservative route. We could wait and see how Abby does through flu season and hold off on making any decisions until March. This would give Abby's body 6 months to recover from her hospital stay and see if her lungs improve. The risk here is that her lungs don't get better and in fact worsen. Then we will have lost our opportunity to operate. <br />
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Dr. Anari knows how much we adored Dr. Campbell and is always quick to acknowledge his brilliance and expertise. When we asked him what he thought Dr. Campbell would have done, he said that he thinks he would have put the VEPTR back in.<br />
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So....yeah. There's so much to consider here and it's up to us to decide what is right. We aren't anxious for Abby to have a VCR because it's such a risky surgery and if Dr. Anari isn't sure she can handle a VEPTR reinsertion, the VCR is even harder on the body. It is probably something that needs to be done in the future, but we would love for Abby to grow a bit more before it does. Our hope was always to allow her to finish growing before we did anything that would fuse her entire spine. (She already has 2 short fusions that have caused 8 of her vertebrae to stop growing.) The wait-and-see approach hasn't worked so well for us so far, but the risk of her not being able to handle a VEPTR surgery is kind of nerve-wracking too. <br />
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We left the appointment rather in shock and having no idea what we were going to do. The shock wore off on the ride home and I had a sudden and fierce panic attack that I managed to hide from the kids. <br />
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Matt and I have talked on and off about it and we know that we want to talk to our pulmonologist about her thoughts on Abby being able to withstand a surgery (and the likelihood of her lungs improving in the next few months). We would also like to meet with the specialist in New York City to get his thoughts on how Abby looks. This is really more to get a feel for future surgeries--we have pretty much decided to wait on the VCR until we really have to do it. We think it's important for him to consult with us now so that we will have a plan for the future.<br />
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CHOP has its interdisciplinary meeting with all of the key doctors in the Center for Thoracic Insufficiency at the end of the month. Abby's case is on the schedule to be discussed and Dr. Anari is hoping others can weigh in on the best course of treatment. There just isn't a great answer to this one. We are, however, thankful that Dr. Anari recognized Abby's decline, listened to the pulmonologists' concerns, and came to us with a plan. This is what we were hoping would happen, because we really didn't want to travel to another hospital.<br />
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For now, we are praying, consulting, and processing. We will be talking to CHOP soon with what we decide and calling to schedule an appointment with the NYC specialist. Will you please specifically pray:<br />
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* That it will be clear which option we need to take.<br />
* That Abby will be safe and healthy, no matter which option we choose.<br />
* That her lungs will improve!!!<br />
* That Abby will trust that we are making the best decision we can for her. She HATES the idea of more surgeries and we don't want her to resent us. We really are trying to do what is best for her.Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com3tag:blogger.com,1999:blog-8909433475631627375.post-4213836786859551462019-11-05T18:13:00.001-05:002019-11-05T18:13:56.387-05:00Double the Pulmonary, Double the Fun!Oh CHOP...<br />
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We have had an ongoing disagreement with CHOP orthopedics over which pulmonologist we should see. We adore our pulm at Hopkins. She has been with Abby since the beginning and really gets the whole picture. She truly cares about Abby and we feel like she always has her best interests in mind. CHOP ortho really only seems to value the opinion of their own pulmonologist with the Center for Thoracic Insufficiency team. We have nothing against him! He is a very nice guy and very knowledgeable, but we see no need to switch pulmonologists when ours is wonderful and 2 hours closer. We don't care for the attitude of superiority we sometimes feel at CHOP and feel like all of her doctors should work together to give her the best care possible, no matter where they work! (Not to mention, Hopkins is not a two bit hospital!!)<br />
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With Abby's recent lung decline and us feeling that a surgical intervention is needed, Abby's pulm has been communicating with CHOP to share her thoughts. CHOP ortho has been very reluctant to do any sort of surgery on Abby since she became septic back in 2017 and had to have the right side hardware removed. He is rightfully concerned about the risk of repeat infections. He said we would really have to convince him that it is needed and that Abby would really have to "deteriorate" in order for him to agree to do it. <br />
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Since he said that in July, Abby has had suspected pseudomonas, double lung pnemonia, a hospital stay, is requiring oxygen with any kind of activity, and is still not being about to keep her oxygen levels up with exertion! So....how much more deterioration do we need here?!?! I've called and emailed the team MANY times, but have been really frustrated. Bottom line: CHOP ortho wanted her evaluated by their CTIS pulm before they would see her again. 😒 So we played the game and made an appointment, which ended up being less than a week after our Hopkins pulmonary appointment!<br />
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Our Hopkins pulm felt like Abby's lung functioning was the same, based on pulmonary functioning tests. (The same does not mean good....I mean, there's nothing good about any of it.) But Abby has been continuing to struggle maintaining her oxygen levels in PT and PE when she was exerting more energy, even though she is currently on 1 liter of oxygen. She gave us the flexibility to bump her up to 2 liters as needed if she can't keep her oxygen levels up. As I have said before, oxygen is a band-aid for Abby that doesn't actually fix the problem, but it is what she needs right now until the real problem is addressed.<br />
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We also looked at her lung CT from her hospital stay in August and our pulm went into great detail about the issues. Abby has some deflation of the lung in her lower lobes (called atelectasis) and some scar tissue from recurrent infections. It's not fabulous. Our pulm feels like we are doing everything we need to do to clear Abby's lungs (SO many daily treatments...) but encouraged me to ask the CHOP pulm if he had anything else he thought we should add. As we have been told before, although Abby's lung functioning is well below the level where they would begin discussing a lung transplant, she is not a candidate for transplant because hers is a structural issue that wouldn't support new lungs properly. Our pulm did make sure to say that while all of this isn't so great and Abby is heading down the path of needing constant mechanical ventilation again, she is also something of a wonder who has surprised us in the past. She described her as amazingly resilient, and I agree!<br />
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So....yesterday after school, we traveled to CHOP and spent the night at a hotel to be there for a 9 a.m. appointment. It was a total of 2 hours and 40 minutes that we were there, although we did have to wait a bit to see the doctor. We did pulmonary functioning tests again, which naturally annoyed Abby because she had just done them last week! 😆 The respiratory therapists also did some extra tests to assess the strength of her respiratory muscles to be able to inhale and exhale properly. Those weren't good either, of course!<br />
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The CHOP pulm agreed with everything our Hopkins pulm is doing, which is affirming (not that we needed it!) He also feels pretty strongly that she needs some kind of surgical intervention even with the risk of infection. The main issues affecting her lungs are her scoliosis and rib gaps, not the kyphosis. That's a separate issue, but it's not as pressing right now as far as the lungs go. He also noted the partial lung collapse and scarring from repeat infections, which he said will only continue to get worse. Her ribs are collapsed on the right side without any hardware and the airway is being pulled up and over the spine because of the spinal rotation. He thinks getting a rib to rib VEPTR back in on the right side will really help and wants it done sooner than later. He agrees with our Hopkins pulm that Abby is heading toward continuous ventilation (ie: trach and vent) if something isn't done.<br />
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The CHOP pulm commented that pulmonary functioning tests are not a valuable assessment tool for Abby because they aren't so valid when the numbers are "this low." He also said in his notes, "At this status, her pulmonary functioning is not a helpful outcome measure and that lack of worsening over the last two years is because her lung volume is effectively as low as it physically can be." That was telling! This was really good information to send to ortho because in the past, they have been basing decisions on her pulmonary functioning tests and not as much on her actual every day function.<br />
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He is going to talk to ortho between now and next Monday when we have our ortho team appointment. Hopefully, he will convince the team that a surgical intervention needs to occur. While we hated having to go to CHOP for pulm when we already have a wonderful one, I think ortho will listen to their own pulm much more because he is "one of them." <br />
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This isn't the first time we have been in a difficult situation like this with doctors disagreeing on treatment. It is never a fun place to be and you just hope and pray that you are making the right decision for your child. I cannot tell you how much research I have done or how many sleepless nights I have had. <br />
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Now that we have two pulmonologists both loudly proclaiming the same concerns and needs, we are ready to take Abby to another orthopedic surgeon for a second opinion if needed. We are hoping that everyone will be on the same page next Monday and we can move forward with a surgical plan. If not, we have two other surgeons in mind. One will require a plane ride, but we will do what is best for our girl! We have found ourselves really missing Dr. Campbell's wisdom and experience during this situation. He was such a brilliant man who truly looked at the whole picture.<br />
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So....we would covet your prayers this week as the doctors share opinions and concerns. We truly feel that Abby needs hardware put back in on the right side in order to improve her breathing. We are also concerned about this being done before she gets any worse and isn't able to withstand a big surgery. Ultimately, we know that God holds Abby in the palm of His hand and He has brought us through so much already. Juliehttp://www.blogger.com/profile/13004724438756137490noreply@blogger.com1