#treachercollinssyndrome

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Hitting it hard now we have a target to get to so please get everyone involved Thankyou 💙 #louilegend #legendloui #newtwitteraccount #starinthemaking #zebedeemodel #louisarmy #treachercollinssyndrome #tcs #raisingawareness
Big Sis is paddling her own kayak! I had to pull her behind my kayak 1/2 the time. @the.ketoclimber and @ryndrws took turns on the paddle board or in the canoe with the little girls. Little Sis was nervous, while her friend spent the whole time leaning over the edge, looking like she would jump in if she could.
When you have a broken leg, and your parents want to play in the lake. Mama used the fabric for cloth diaper covers and made a giant water-proof cover to keep the cast dry. Then an adult size sock to protect the cover.
hello sestra 👀👀 (You bet your ass this look was an ode to Helena- if you didn’t get the Orphan Black reference unfollow me rn) @milkmakeup Blur Stick, Kush Mascara @anastasiabeverlyhills Modern Renaissance Palette @morphebrushes Brushes + @jaclynhill Palette @nyxcosmetics Vegas, Baby Pigment (mixed with @inglot_cosmetics Duraline) @litcosmetics Fully Nude Glitter @tartecosmetics Shape Tape Concealer @katvondbeauty Shade & Light Contour Palette, Lolita Liquid Lipstick @sleekmakeup Solstice Highlighting Palette #microtia #treachercollins #treachercollinssyndrome #makeup #makeupartist #torontomua #orphanblack #milkmakeup #anastasiabeverlyhills #morphe #morphebrushes #jaclynhill #nyxcanada #nyxcosmetics #nyxcosmeticspro #nyxprofessionalmakeup #inglot #inglotcanada #litcosmetics #tartecosmetics #katvondbeauty #kvdbeauty #kvdlook #sleekmakeup #ultabeauty #sephora #sephoracanada #wakeupandmakeup
I've resisted the IGTV bug long enough. Go check out my first video and stick around if you want to! 📱👍😊 #igtv #largefamilylife #homeschool #essentialoils #treachercollinssyndrome #encouragement #faith #simpleliving #qanda #connections
This girl insists on wearing pants and then bunches them up above her cast. It’s too hot for that. So I found our Ali-baba pants from India! Lightweight, loose fitting and she is happy and cute!
These orders of softbands for Baha hearing aids are going out in the mail this morning!
Found this on my feed but how cute is @pjs_playhouse 😍❤️🤟🏽my heart 💚#choosekind #wonderthemovie #treachercollinssyndrome 💜
As requested, more Baha softbands for boys are now in stock! Also some mermaids wanted to be where the people are, and Rapunzel wanted to leave her tower. So I added those options to the Baha Bowtique as well. The link is in my bio.
An abundance of great quotes was given throughout this movie and this one struck me the most. I have a very special close relative. VERY special. His presence in the family gave us joy and honed our strength and patience. We also acquired a great deal of knowledge because of him. Everywhere we go, he would be the main attraction and he loves that. He loves to stand out. Not only that he educates us, but he also educates the people around him wherever he goes. When people approach us, we tell them. We spread awareness. That is the most important thing that should be done globally, spreading awareness. For a better future for those in need of special care and attention. Why be ordinary and blend in when you can be extraordinary and stand out? Never be ashamed of your children. Never be ashamed of who they are and who they are destined to become. @wonderthemovie #juliaroberts #specialchildren #downsyndrome #autism #specialkids #TreacherCollinsSyndrome
Some softband orders which went out in the mail yesterday.
Sharks, mermaids, unicorns, and princesses. A couple fun orders of softbands for Baha hearing aids :)
Cassidy's surgery was a success! This was her 8th and most complicated surgery yet in her 5 short years. She'll need plenty of time to recover but I wanted to let everyone know how she was! Here is a message from her mom: "Cam was so happy to see his big sister today!! Cassie slept most of the day. She woke up a few times and signed that she was hungry. She drank out of a straw which is a great sign that her nerves and joints are great. I asked her if she was in pain and she nodded no, I asked her if she could smile and she slowly gave me her beautiful smile. They had to change the trach size for surgery to a larger trach so I can’t hear her voice anymore but we should be changing it back tomorrow to her correct size. She has the sweetest little voice." #cassidy5k #cassidyscrusaders #tcs #treachercollins #treachercollinssyndrome #tufts #floatinghospital #tuftsfloatinghospitalforchildren
I never wanted kids growing up... never played with dolls or had an easybake oven, and when asked what I wanted to be when I grew up, my answers were all over the map! Jockey, math teacher, police officer, and then finally settled on hair/makeup. But I NEVER said that I wanted to be a mom. It wasn’t until I met my husband that I changed my mind. There are definitely people who are better cut out for this role... people who always wanted kids and/or people who grew up with many siblings... people who probably find the role of mom to be a lot easier than I do. But, on the other hand, those same people would probably find running around on a set for 19 hours a day to be very difficult/stressful, yet l can do with ease . Different strokes for different folks. Even if you are playing a role that you find unnatural or difficult, you can will the strength to adapt and conquer! And the motivation for this change is LOVE, plain and simple! ❤️ And now I want more kids 😂 - Crystal Kouri, Special needs mom to Paul @pjs_playhouse who is living with Treacher Collins Syndrome. Cc @crystalkouri_hairmakeup #MiraclesandMesses #TreacherCollinsSyndrome #health #parenting #style #instagram #strong   #motherhood #Blessings #congratulations #love #girlpower #happy #lifestyle #lifestyleblogger #smilethroughthepain #motivation #miracles #survivor   #beforeandafter
Best cure for a crappy day: drink cider and dance to happy sounding sad music (I.e. Paramore) (Also hell yea you best believe I posted another no-prosthetics pic!!! Character development!!!! Let’s see how long this lasts lmao) Look inspired by @visiblejune 😍 @milkmakeup Blur Stick, Kush Mascara @tartecosmetics Shape Tape Concealer @anastasiabeverlyhills Medium Brown Dipbrow Pomade @inglot_cosmetics # 77 Gel Liner @nyxcosmetics Matte Liquid Liner @makeupforeverca Flash Palette @katvondbeauty Shade & Light Contour Palette, Nos Fur Atoo Liquid Lipstick @sleekmakeup Solstice Highlighting Palette Brushes by @morphebrushes #microtia #treachercollins #treachercollinssyndrome #makeupartist #milkmakeup #tartecosmetics #tarte #anastasiabeverlyhills #abhbrows #inglot #inglotcosmetics #inglotcanada #nyxcosmetics #nyxcanada #nyxprofessionalmakeup #nyxcosmeticspro #makeupforever #makeupforeverca #katvondbeauty #kvdlook #kvdbeauty #sleekmakeup #morphe #morphebrushes #ultabeauty #sephora #sephoracanada #wakeupandmakeup #undiscovered_muas
#Repost @statenislandoralsurgery with @get_repost ・・・ Treacher Collins syndrome is a genetic disorder that affects about 1 in 50k births. A typical clinical characteristic includes #micrognathia resulting in subsequent narrowing of the airway and obstructive sleep apnea which can be life threatening especially in the setting of a newborn. This #treachercollins newborn presented with persistent respiratory and feeding issues in the early months of life and decision was made for mandibular #distractionosteogenesis in order to improve respiratory function and esthetics. #virtualsurgicalplanning was used to simulate a 10mm distraction (swipe ➡️) which we managed to achieve clinically. Immediately following completion of distraction patient showed a significant decrease in snoring and postural stridor as well as an improvement in feeding tolerance and facial esthetics. 👏👍💪 #statenislandoralsurgery #SIOMS #oralsurgery #oralmaxillofacialsurgery #treachercollinssyndrome #geneticdisorder #syndrome #cleftlip #cleftpalate #mandibulardistraction #retrognathia #craniofacial #vsp #medicalmodeling #3dsystems #kls #distraction
Today’s “Get to Know Your Customers” Day! So here’s a testimonial that makes us smile: “These people are humanitarians just as much as they are sales people and employees. That was ultimately what sold me on the company. I have been using American Power & Gas for about 2 years now for my business, and I am so happy that they reached out to me. They were able to offer a very simple but worthwhile and logical approach to my whole power situation. I found that I was very happy with how they operated, and as it turns out they were able to give me excellent service for the last 2 years.” - Chris R. We love our amazing customers! If you’re a resident of NY, NJ, PA, OH, IL or MD, visit our website so you can be one, too!
Cassidy has her 8th and most complicated surgery this morning so keep her in your thoughts and prayers. Here's a note that her mama posted last night: "Thank you everyone for your kind words, messages, prayers,and support as we are about to go through Cassie's 8th and biggest surgery yet. We spent the day at Monkey Joes today, just being silly and having fun. My heart is beating out of my chest as I think about Cassidy's surgery and not being able to see Cameron for a few days. He is going to miss Cassie so much but I don't want him seeing her when things might be a little hard for her. Cassie is doing amazing and excited about her surgery. I will try to keep everyone updated. We are heading to bed soon because we have to be in Boston at 5:30am. Her surgery will start at 7:30am." 📷: Keri Ciofolo #cassidy5k #cassidyscrusaders #tcs #treachercollins #treachercollinssyndrome
#selflove#Repost @hayleyelizabethmua • • • • • 🌞🌞🌞🌞 Today I felt like not wearing my prosthetic ears, and so- I didn’t. Having such a visible physical difference, I’ve spent my whole life trying covering it up. As a kid, really up until getting my prosthetics, there wasn’t a single moment where I wasn’t tugging at my hair constantly to cover my ears. I hadn’t publicly worn my hair in a ponytail in god know how long. And since getting my prosthetics, I wear them every single day. The prosthetic adhesive is harsh, my skin often hurts and is left raw, the cartilage feels sore from being pressed down on. So today, I didn’t wear them, and felt fine. @milkmakeup Blur Stick, Kush Mascara @tartecosmetics Shape Tape Concealer @maccosmetics @maccosmeticscanada Face & Body Foundation @nyxcosmetics @nyxcosmetics_canada Glazed Donuts Liquid Illuminator @sleekmakeup Solstice Highlighting Palette @katvondbeauty Shade & Light Contour Palette, Lolita Liquid Lipstick Brushes by @linda_morphe @morphebrushes #microtia #treachercollins #treachercollinssyndrome #aboutface #makeup #makeupartist #toronto #torontomua #milkmakeup #tartecosmetics #macpro #maccanada #maccosmetics #nyxcanada #nyxcosmetics #nyxcosmeticspro #nyxprofessionalmakeup #sleekmakeup #katvondbeauty #kvdlook #kvdbeauty #morphe #morphebrushes #sephoracanada #ultabeauty #wakeupandmakeup #undiscovered_muas
🌞🌞🌞🌞 Today I felt like not wearing my prosthetic ears, and so- I didn’t. Having such a visible physical difference, I’ve spent my whole life trying covering it up. As a kid, really up until getting my prosthetics, there wasn’t a single moment where I wasn’t tugging at my hair constantly to cover my ears. I hadn’t publicly worn my hair in a ponytail in god know how long. And since getting my prosthetics, I wear them every single day. The prosthetic adhesive is harsh, my skin often hurts and is left raw, the cartilage feels sore from being pressed down on. So today, I didn’t wear them, and felt fine. @milkmakeup Blur Stick, Kush Mascara @tartecosmetics Shape Tape Concealer @maccosmetics @maccosmeticscanada Face & Body Foundation @nyxcosmetics @nyxcosmetics_canada Glazed Donuts Liquid Illuminator @sleekmakeup Solstice Highlighting Palette @katvondbeauty Shade & Light Contour Palette, Lolita Liquid Lipstick Brushes by @linda_morphe @morphebrushes #microtia #treachercollins #treachercollinssyndrome #aboutface #makeup #makeupartist #toronto #torontomua #milkmakeup #tartecosmetics #macpro #maccanada #maccosmetics #nyxcanada #nyxcosmetics #nyxcosmeticspro #nyxprofessionalmakeup #sleekmakeup #katvondbeauty #kvdlook #kvdbeauty #morphe #morphebrushes #sephoracanada #ultabeauty #wakeupandmakeup #undiscovered_muas
PipSqueak insisted she wanted “matching shirt.” I always try to dress her in outfits which match, so which exact outfit does she think is called “matching?” Then she pointed to her blue shirt and said, “matching Ah-yah.” Oh, the outfit she was wearing the day her friend came over and they were matching. Not to be confused with the other time the girls were wearing matching outfits, but that’s actually Big Sister’s pink shirt. @mrs_ryndrws @ryndrws
Yesterday, I posted about the song "This is Me" from "The Greatest Showman." Here's why that song moved me so much: my craniofacial community and these ladies right here.⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ We're all craniofacial advocates in our own ways. We have been the "oddities" (and sometimes we still are), but we have never let that stop us from blossoming into amazing individuals. We are warriors, and we are fighting to change how others with differences view themselves. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ It took me 34 years to be fully confident in myself. I had to navigate the insecurities I had developed because of my syndrome. And I don't want anyone else to have to wait that long, Treacher Collins syndrome or not.⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Every time I hear this anthem, I am empowered to work harder, longer, and stronger to help the younger cranio generations (and anyone who feels different) not only accept themselves, but also be PROUD of themselves. The women in this picture are proof that our differences do not define us. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ We learn from the things that make us unique; We become stronger and braver because of them. Never let your differences tear you down. You ARE enough just as you are. You ARE beautiful just as you are. You ARE loved just as you are.⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ My difference has made me unapologetically bold. And I know nothing will stop me from becoming who I was meant to be. Come and get me world. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Thank you #thegreatestshowman and @kealasettle for giving my community an anthem to believe in. It truly is a game changer.⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #choosestrong #boldlyb #craniofacialawareness #treachercollins #treachercollinssyndrome #TCS #inspireothers #inspiration #inspirationalmusic #unapologeticallyme #authenticconfidence #findconfidence
Look at how well our little peanut is doing! She took a nice nap when we got home and is acting more like herself now. Sharing more details in her FB group. 💜 . . . . . . . . #allbetter #littletrooper #wonder #trachbaby #gtube #treachercollinssyndrome #ccakids #lovemelovemyface #reallifeauggie #choosekind
Waiting for Shelby's turn with the surgeon. She's having a couple minor procedures done, just to be sure her airway looks good. She's ready to party....kicking her band off her ankle, pulling Daddy's beard and Mommy's hair. We just love our rowdy little peanut. 💜 #treachercollinssyndrome #wonderbaby #trachbaby #ccakids #craniofacialawareness #pretty #thatgownthough #littlelove #daddysgirl #lovemelovemyface #choosekind
My girls love to dance and sing songs from Frozen at the top of their lungs. Little Sis has incorporated the word “Baha” multiple times. It’s pretty much the only word I understand. I figured out she’s trying to sing: “Elsa, wanna BAHA snowman.” “The cold doesn’t Baha me anyway.” “for the first time in forBAHA.” and “Tell the guards to Baha up the gates!” Maybe someday she will write a hearing aid parody version of these songs...
. . . 以前にドキュメント番組で、トリーチャー コリンズ症候群の話を知って、 凄い気になってて、観たかった映画 「ワンダー 君は太陽」 とにかく良い映画だった^ ^ 勇気に、優しさ、家族の愛、奇跡がたくさんつまったあたたかいストーリー、 父子の絆にたくさん共感し感動した、、 たくさん泣けたけど…(TT) . 見終わった後は、ハッピーな気分で、主人公オギーとハイタッチ🤚したい気分♪( ´▽`) . . 大人から子供達に、沢山の人に見てもらいたい、 世の中から偏見な目が無くなり助け合い 優しい世の中になる様に… . 彼の見た目は変わらない、変えられるのは我々の見る目。 . . . #Wonder #ワンダー君は太陽 #wondermovie #movielove #映画 #JuliaRoberts #ヒューマンドラマ #生まれつきの障害 #トリーチャーコリンズ症候群 #TreacherCollinssyndrome #Chewbacca #チューバッカ #優しさの半分は勇気でできている #相手を知りたかったら 、やることは一つ…良く見ること
Regrann from @pjs_playhouse - I never wanted kids growing up... never played with dolls or had an easybake oven, and when asked what I wanted to be when I grew up, my answers were all over the map! Jockey, math teacher, police officer, and then finally settled on hair/makeup. But I NEVER said that I wanted to be a mom. It wasn’t until I met my husband that I changed my mind . There are definitely people who are better cut out for this role... people who always wanted kids and/or people who grew up with many siblings... people who probably find the role of mom to be a lot easier than I do. But, on the other hand, those same people would probably find running around on a set for 19 hours a day to be very difficult/stressful, yet l can do with ease . Different strokes for different folks . Even if you are playing a role that you find unnatural or difficult, you can will the strength to adapt and conquer! And the motivation for this change is LOVE, plain and simple! ❤️ And now I want more kids 😂 #loveconquersall #treachercollinssyndrome #specialneedsmom @crystalkouri_hairmakeup
I never wanted kids growing up... never played with dolls or had an easybake oven, and when asked what I wanted to be when I grew up, my answers were all over the map! Jockey, math teacher, police officer, and then finally settled on hair/makeup. But I NEVER said that I wanted to be a mom. It wasn’t until I met my husband that I changed my mind . There are definitely people who are better cut out for this role... people who always wanted kids and/or people who grew up with many siblings... people who probably find the role of mom to be a lot easier than I do. But, on the other hand, those same people would probably find running around on a set for 19 hours a day to be very difficult/stressful, yet l can do with ease . Different strokes for different folks . Even if you are playing a role that you find unnatural or difficult, you can will the strength to adapt and conquer! And the motivation for this change is LOVE, plain and simple! ❤️ And now I want more kids 😂 #loveconquersall #treachercollinssyndrome #specialneedsmom @crystalkouri_hairmakeup
This week set the record for the most: - Headbands made. - Hours of babysitting. - Lego sets built. I haven’t done much else this week. We’ve been eating left-overs, smoothies, and waffles. We did not go to the climbing gym. And someone needs to clean my house...
One kid staying dry in the shade, the other drying off in the sun...
#Repost @abridgethatmatters with @get_repost ・・・ Meet the speakers: Our first speaker we’d like to introduce you to is Kristin Bartzokis! She unfortunately won’t be able to leave sunny Florida to come to the event so she submitted a video. Let me tell you 😭🙌🏻 she had me crying and chills the entire time! Here is a little background on Kristin: Kristin Bartzokis has never looked, or lived, like everyone else. Born with Treacher Collins syndrome, a craniofacial anomaly, Kristin experienced a childhood marked by surgeries and medical procedures, all while she became a champion gymnast. As an adult, Kristin has proudly accepted the challenge to stand out. A marathoner, designer, author, and advocate, Kristin has been featured by Cosmopolitan and is a contributor for The Mighty. She released her memoir, Diary of a Beautiful Disaster, in 2017 and is eagerly awaiting the release of her second book, (Extra)Ordinary Women: Ten Inspirational Stories, this Fall. Visit KristinBartzokis.com to learn more about Kristin’s journey and her upcoming projects. #speakerpanel #findyourvoice
Meet the speakers: Our first speaker we’d like to introduce you to is Kristin Bartzokis! She unfortunately won’t be able to leave sunny Florida to come to the event so she submitted a video. Let me tell you 😭🙌🏻 she had me crying and chills the entire time! Here is a little background on Kristin: Kristin Bartzokis has never looked, or lived, like everyone else. Born with Treacher Collins syndrome, a craniofacial anomaly, Kristin experienced a childhood marked by surgeries and medical procedures, all while she became a champion gymnast. As an adult, Kristin has proudly accepted the challenge to stand out. A marathoner, designer, author, and advocate, Kristin has been featured by Cosmopolitan and is a contributor for The Mighty. She released her memoir, Diary of a Beautiful Disaster, in 2017 and is eagerly awaiting the release of her second book, (Extra)Ordinary Women: Ten Inspirational Stories, this Fall. Visit KristinBartzokis.com to learn more about Kristin’s journey and her upcoming projects. #speakerpanel #findyourvoice
Yesterday at lunch we talked about adventures. One girl went sky-diving, one girl wants to go, one girl never will, and I’m just not sure. Having had a cornea transplant, I need to be extra cautious with what I do. (Heck, I won’t even go on Mission Space at Epcot anymore, and I LOVE the gravitron type rides.) I guess part of me is a responsible adult. . But I do enjoy a good adventure. It’s how I forget everything that’s bothering me. The need to forget is exactly what led me on a weeklong solo adventure trip last summer. I had a lot I needed to get off my mind. . And it certainly worked. This was the view from my first adventure- a sunset hike. Sitting on top of a sandstone formation watching the sun sink down behind the mountains across the way, I focused on being in the present. And in that moment, my mindset began to change. . I cannot always keep my stressors or my anxiety at bay, so whenever I need a reset, I seek out an activity that will divert my focus. . What’s your favorite way to destress? And what kind of adventures should I look into next? . #choosestrong #boldlyb #redmountainresort #hiking #utahgram #treachercollinssyndrome #craniofacialawareness #mindsetshift #forgetstress #camelbackhike
Sleeping Beauty. 💖
When Mama is babysitting, we clean up the Legos, so the baby doesn’t eat them. Sometimes Monkey climbs over the baby-gate to sit on the steps and “read” the instruction manuals. This time, she got out a lego set too and rebuilt it twice, which is easy when you don’t have to sort through all the legos to find the right piece. Then little Sis figured out how to open the baby gate to go join her sister. #worksmarternotharder #finemotorskills #buildinglegos #bigsislittlesis
Today my baby boy made 1 month💙 & He’s special in his own way😍. A lot of people have been wondering why he’s still in the hospital well this is his story. Jr✨ was born with something called #TreacherCollinsSyndrome (TCS) a condition that affects the development of bones and other tissues of the face. He has a deformed ear on one side, A smaller jaw than normal kids & has trouble with breathing while eating and sleep which is common for kids with TCS👶🏽. With this being said he is awaiting surgery for his breathing (A tracheostomy) but it won’t change the slight difference you’ll see in his looks. He will live a normal life it doesn’t affect his learning ability or brain at all. Thanks for all the prayers🙌🏽and Thanks to the people whose been checking on us😘
A couple more orders of headbands for Baha and a Toy Hearing Aid ready to go in the mail in the morning.
Apparently I haven’t taken any pictures of my kids lately. Maybe because I’ve been busy making headbands and building legos. These softbands for BAHAs went out in the mail today.
#セルパク 12。 ちょっと前に観た🎦に逃げるw ・ 意味もなく泣きたいから観た時の思い。 ・
ワンダー 君は太陽観た。
オギーだけの話ではなく、みんな〜のお話。
観て良かった!多くは書かない。
批判もあるようだけど…
・
いつもながら泣きゃ〜いいってもんではないけれど感涙!
泣くだろう?と思って行った。
泣かない!我慢大会のつもりでもあったwしかし、爆涙!!
最近泣いてない人・泣けない人、必涙だよ(^^)
・
#ワンダー君は太陽 #wonder#スティーヴンチョボスキー #stephenchbosky#rjパラシオ #rjpalacio 
・
#ジュリアロバーツ #juliaroberts#ジェイコブトレンブレイ #jacobtremblay#オーウェンウィルソン #owenwilson 
・
#オギー #auggie#トリーチャーコリンズ症候群 #treachercollinssyndrome#人間の内面の価値には外見で推し量れないものがある 
・
#映画 #movie#film #ビバムビ#instagood #instamovies
Some girly headbands for Baha hearing aids...
#Repost @elifs_tcs_journey (@get_repost ) ・・・ Ailemiz genişliyor. Bugün Almanya ‘dan ablası Elif’ i ziyarete geldi. / Our family is expanding. Today, her sister came from Germany and visited Elif. #treachercollins #treachercollinssyndrome #tcsawareness #tcs #raisingawarness #awareness #society #respect #friendship #toplum #farkındalık #saygı #önyargı #hepberaber #resim #hayat #duyarlılık #tbt #picoftheday #wonder #mucize #sendrom
Ailemiz genişliyor. Bugün Almanya ‘dan ablası Elif’ i ziyarete geldi. / Our family is expanding. Today, her sister came from Germany and visited Elif. #treachercollins #treachercollinssyndrome #tcsawareness #tcs #raisingawarness #awareness #society #respect #friendship #toplum #farkındalık #saygı #önyargı #hepberaber #resim #hayat #duyarlılık #tbt #picoftheday #wonder #mucize #sendrom
Some more headbands for Baha hearing aids, made earlier this week.
Repost... Talking to Noah tonight about his mission trip, I learned that the child in this photo has Treacher Collins Syndrome, the same as the child in the movie ‘Wonder’. He could only communicate with grunts and limited gestures. The saddest part of his story is that he did not have a name. Noah took it upon himself to name him Cooper, the name of his best friend. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️ #treachercollinssyndrome
Repost... Talking to Noah tonight about his mission trip, I learned that the child in this photo has Treacher Collins Syndrome, the same as the child in the movie ‘Wonder’. He could only communicate with grunts and limited gestures. The saddest part of his story is that he did not have a name. Noah took it upon himself to name him Cooper, the name of his best friend. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️ #treachercollinssyndrome
Family movie night 🍿 🎥 PJs choice @wonderthemovie
“When given the choice between being right or being kind choose kind.” #sisterlove
I've been holding this sleeping beauty for the past hour. She hasn't been able to keep most of her feedings down since yesterday morning. I was blessed with 8ish ounces of baby puke down the front of my shirt this morning. Kinda scared to move her. 😬😂 Hoping it's nothing big... and that whatever it is has passed. Any excuse for snuggles, right? 👶❤
فیلم wonder راجع به پسربچه ای به اسم آگوست پولمنه که از بدو تولد سندروم تریچز کالینز داشته و به خاطر همین در صورتش یه ناهنجاری هایی وجود داره. به همین خاطر آگوست دور از اجتماع زندگی کرده و درس خونده ولی از کلاس پنجم به بعد تصمیم میگیره که وارد اجتماع بشه... بازیگر نقش آگوست جیکوب ترمبلیه که با اینکه فقط ۱۱ سالشه ولی توی فیلم فوق العاده بازی کرده. برای این نقشش هم باید کلی گریم سنگین رو تحمل می کرده. یکی دیگه از فیلم هاش هم فیلم the room هست که توی اون هم با وحود سن کم نقش آفرینی خیلی خوبی داشته. واقعا با استعداده 😍😍😍 در ضمن کلی هم معروف شده و با کلی سلب تا الان ملاقات کرده 😊 #wonder #wondermovie #wonderbook #StephenChbosky #rjpalacio #JacobTremblay #OwenWilson #JuliaRoberts #Augustpullman #auggiepullman #JackWill #wonderquotes #jacobtremblayandleonardodicaprio #jacobandleo #leonardodicaprio #theroom #wonderthemovie #jacobtremblayedit #jacobtremblayandshawnmendes #emmadonoghue #wondermovie2017 #jacobandshawn #shawnmendes #shawnmendesedits #shawnmendesfan #shawnmendesarmy #iranianfangirl #roombook #roommovie #leonardodicapriofan
Ani nevíte jak velkou radost z toho mám 😍😍 štvalo mě, že neslyším. #cochlear #baha #bahadivino #tcs #treachercollinssyndrome #czechrepublic #czech #koprivnice #nofilter #jára84 #home @cochlear_global
New patterns are in stock at TheBahaBowtique.Etsy.com. Custom softband headbands are compatible with Cochlear Baha and Oticon Ponto Hearing aids.
Shelby loves cucumbers! She also learned a new trick yesterday. Our baby girl is growing up fast! 😭😍 #wonderbaby #treachercollinssyndrome #milestones #choosekind
We now put everything in this wagon, instead of scattering our possessions all over the place, at the climbing gym, playgrounds, picnics, etc. A random guy commented, “aren’t you spoiled?” Yes, I am! Oh, you were referring to the toddler who has a broken a leg? No, “spoiled” would be if she were being carried (along with all the stuff). Maybe she is a little spoiled because she gets to ride in a wagon, instead of a stroller, like all the other kids her age. But she can unbuckle the stroller and get out. Then the stroller tips over from the weight of the diaper bag. Then I end up carrying everything, while pushing a stroller and chasing a toddler. So this is a picture of a very happy win-win situation for the whole family.
July is National Cleft & Craniofacial Awareness month.⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I often talk about my Treacher Collins syndrome, but I don’t often discuss my cleft palate. Many people are familiar with a cleft lip, but not many know the term “cleft palate,” which is a hole on the roof of the mouth. It’s not noticeable as you can tell in this photo, but it is life altering. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Having a cleft palate made eating and drinking difficult. As a baby, I couldn’t suck on a bottle, and when I started to eat solid food, the food and liquids would get caught in the hole. I would start to choke and my mom would have to immediately use her finger to clean it out. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ At the age of eighteen months, I had my first surgery, an easy procedure to repair the cleft palate. And now I can’t stop eating. 😂😁⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #treachercollinssyndrome #tcs #choosestrong #cleftpalate #craniofacialsurgery #reconstructivesurgery
Oh boy! Working on some softbands for BAHAs while Dada builds legos with our girls.
Sevgili arkadaşlarım @emrerdal_ ve @oznur__erdal un kızları Elif bebek bir yaşında ! Sağlıklı mutlu ve neşe dolu bir ömür diliyoruz 🎊🎉🎁🎂 Arkadaş listemden ricam bu sendromun farkında olmaları ve bu farkındalığı artırmak adına kurdukları derneği takip etmeleri 🙏 @yuzumlemutluyum Başlangıçtan bugüne kadar yaşananları Emre kısaca özetlemiş. https://youtu.be/0yz6JM2koAQ 🎥 Dear friends Emre and Oznur’s babygirl 1 years old. We wish her and you healty ,happy and full of joy life time! From beginning until now Emre summarized with a short video on youtube channel https://youtu.be/0yz6JM2koAQ 🎥 I’ve a special request from my buddy list please follow,share founding association so you can raise awareness about that issue. @yuzumlemutluyum We support Elif and all other TCS people all over the world. 🌍 #treachercollinssyndrome #treachercollins #tcs #awareness #yüzümlemutluyumderneği #society #respect #raisingawareness
Normally she avoids water and does not like getting wet. But put a cast on her leg and tell her she cannot get wet, and suddenly she wants to live life on the edge.
the movie just came out in japan last month and i'm loving it💕 it's not just a sentimental, oldfashioned tearjerking story but has a message that we can all relate to.. so heartwarming and inspiring😭 here are some quotes from the book that will inspire you to always #choosekind ; "when given the choice between being right or being kind, choose kind." "kinder than is necessary. because it's not enough to be kind. one should be kinder than needed." "everyone in the world should get a standing ovation at least once in their life because we all overcometh the world." ... well, i guess i'm going back to the theater😌💭 "正しいことをするか、親切なことをするか、どちらかを選ぶときには、親切を選べ" .. この映画のキーになっている言葉。優しさ・思いやりで溢れた 最高にあたたかい映画だった✨遺伝的な疾患で手術を繰り返し、これまでホームスクールだった男の子が、小学5年生で初めて学校に通うことになる~ その1年を通しての成長の物語。このまま永遠に彼らの日常を見ていたいくらい良かった😭主人公オギーの話だけでなく、お姉ちゃんの視点、友達の視点でも描かれていて、各々抱えている悩みや不安にも共感できる部分があるし、みんなのストーリーに胸が打たれた.. 普段あまり本を読まない私が 原作~関連本を読み漁るほど😭 ←絵本は甥っ子に、洋書も勢いでポチっとしてしまった(笑)本の方が各々の気持ちが丁寧に描かれていて、心が震えた。でも映画の配役がとにかく素晴らしい。ママもパパも お姉ちゃんも先生も 友達も。真ん中の太陽オギーだけじゃなく、太陽の周りをまわる惑星みんな 愛に溢れたワンダーなんだ、と。その他 いじめっ子役が#僕のワンダフルライフ では(意地悪とは真逆の) 主役の幼少時代を演じてた子だったり、お祖母ちゃん役がSATCでサマンサがLBになった時の相手役だったり。このお祖母ちゃんがまたいい役なんだ😭 今日は七夕🎋この世の中が優しさに満ちた世界になりますように..💫 ハッピーでワンダーな人に囲まれた今に感謝しつつ、祈りをこめて🙏🏻 #wonder #wonderthemovie #kinofilm #auggieandme #rjpalacio #wereallwonders #auggiepullman #jacobtremblay #juliaroberts #owenwilson #izabelavidovic #noahjupe #danielleroserussell #brycegheisar #milliedavis #ellemckinnon #soniabraga #precept #treachercollinssyndrome #ワンダー #ワンダー君は太陽 #もうひとつのワンダー #みんなワンダー #ワンダーみた #七夕 #星に願いを
Canım oğlum varlığına her an sukrettigim..❤ bugün tam 19 aylık oldun..(577.gun) rabbim beni senin gibi bir evlat ile ödüllendirdiği icin şükürler olsun🙏🙏 sen cok guclu ve tuttugunu koparan bir evlatsin.. hayat gayene ve hayata bakis acina daha bu yaşta hayranim oğlum ❤❤ seni cok seviyorum benim minik mucizem❤ iyiki varsin iyiki hayatimdasin.. en guzel melodi en guzel sarkisin hayatimda #treachercollinssyndrome #treachercollins #treachercollinssyndromebeautiful #tcs #tcsmom #mucize #farkindalik #wonder #engüzeliyikim #hamdolsun #evlat #canimoglum
Got our copies of #pjscirque thanks to @kobearphotography We will be sending out in the mail next week! And will posting all the photos soon too!
Just got done registering Shelby for an upcoming outpatient procedure. 📞 They'll be taking a look inside her throat just to be sure everything is as it should be. 👍 Not a big, scary surgery, but a bit nerve racking nonetheless. Prayers for our peanut are much appreciated! 💓 #trachbaby #specialneeds #treachercollinssyndrome #breatheeasy #oneofmany
I will always notice the things that make my face unique. That is inevitable. But I no longer view my scars and random indentations as flaws; I see them as the very things that tell my story, a story of strength, courage, and triumph. It has taken me a lifetime to come to that realization, but now that I’m here, I’m never looking back. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ My scars are not imperfections; rather, they are the very things that make me beautiful.⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I hope you realize that what makes you unique, also makes you perfect. Never change. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #findyourconfidence #choosestrong #beyou #smile #iambeautiful #myscarsarebeautiful #myscarstellmystory #treachercollinssyndrome #TCS #microtia #starkey #hearingaid #boneconduction #selflovewarrior #selflove #mirrormirror #perfectlyimperfect #becauseimhappy #thisisme #spreadlove #inspirational #teamself
Dirt, water, food, and friends makes for a fun afternoon. Our extrovert water loving child is in the water with her friends. Little Sis is enjoying the Lazy River for people who are too lazy to get in the water and hate getting wet and have to keep the cast dry anyway...
Making headbands for BAHA hearing aids :)
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