It’s a record breaking day! 14 headbands & 9 DIY kits. Every time I go out of town, I come home to discover, I’ve got work to do. But this is making we concerned about the Christmas rush. So please do not wait till the last minute to order softbands. Thank you!
TCS twins, BAHA buddies, having lots of fun together.
Three little Baha princess, with big kids to help keep them walking straight on the sidewalk.
sedih itu saat anak berbeda jauh sama kita 😥
ceritanya lagi di salah satu moll besar nganterin uti beli sepatu ,capek nunggu yauda duduk sambil lihat lihat sepatu kece. Tiba tiba ada ibuk ibuk dateng terus senyum senyum deketin akay sambil bilang 👵 : ganteng bangett putihhnyaa
👩 : iya eyangg makasih
👵 : papa mamanya bule ya apa arab ?? kok hidungnya mancung 👨 : "kasih senyuman dan dalam hati bilang"(lhaa aku ibuknyaa bukan mba cussnya 😭😭)
👵 : cakep ya sidedek duhh gedenya cakepp ini nanti anak bule yaa
👨 : iya makasih eyang (dan saya berpamitan berlalu pergi)
yaelaaa nak segitunyaa amatt ibuk dikira mba cuss kamu 😭😭 nasib ibuk cuma buat wadah ya gini dan semua mua mirip bapak 😭
Gapapa dikata mba cuss kamu penting kamunya cakep 😍😘 #askara
We arrived at @handsandvoices
Family Camp and found the legos... I was hoping our kids would run off their energy before bed, or sit around and build stuff while meeting new friends :)
My Marketing Manger (husband) keeps advising me to get a real logo. Not that this picture of our daughter isn’t cute. Well, it took almost 2 years, but I am suddenly inspired to make a logo, thanks to yesterday’s Unlocking Creativity Workshop. So, a real logo will be unveiled soon and I cannot wait to show you! Thank you @the.ketoclimber
This picture might be a little intimidating, but this is Walt doing really well! A Li'l medical update for all this morning! He originally was doing well with just one nasal trumpet on room air, but he gets SO agitated with cares that he would desaturate REALLY LOW (down to the 30's and once to 4%...he should be above 90! #momscare
). The doctors made the decision to add a second trumpet, and more recently have added a humidifier to thin secretions. These secretions are what are blocking his trumpets and may be causing the desats. This is all temporary as the #nicu
doctors work with plastics and ENT to try and figure out the more permanent solution. His scheduled CT scan today will provide more information! Despite all of this, he LOVES to cuddle with mom & dad and has done really well since the humidifier was added! #waltthewarrior #nicubaby #treachercollinssyndrome #gofundme
All Christmas theme Softbands are on sale! And FREE shipping when you order at least 4 items from TheBahaBowtique.Esty.com
Happy Birthday Auggie 💙 Auggie Pullman is a character with a Craniofacial condition called Treacher Collins from a book called Wonder. It’s about his journey starting out at a new school; navigating it while everyone else learns that kids with facial differences are still kids,#differentiscool
and the right choice is to always, always #choosekind
❤️ There are kids & adults in real life with Treacher Collins & we’ve been blessed to call many of them our friends 💛 Even though Marco, RJ & I have Apert Syndrome, it is a similar Syndrome & journey & we’ve been so grateful & happy to help the world learn further about the beauty in diversity as well as about the different syndromes in the Craniofacial community. #wereallinthistogether #love #craniofacialawareness #life #treachercollinssyndrome #bravehearts #wonderwednesday
Gearing up for PJs cleft palate repair surgery... he has a lot of difficulty swallowing because the hole in the roof of his mouth is very large.
But I still give him something to chew on so that he enjoys tasting flavors while eating through the Gtube. This will help him to learn how to move his tongue as well as get him interested in eating by mouth. (For those concerned about me giving him sweets, I would like to mention that #1
, he doesn’t swallow well, so he’s not ingesting much. And #2
, the longer a child goes without eating, the harder it will be to gain their interest. They can loose the instinct to eat because they have been fed by a machine their whole life, so I would give him Pop Rocks at this point if I thought it would help to keep his interest)
#oralmotortherapy #oralmotorskills #occupationaltherapy #gtube #cleftpalate #cleftstrong #kangaroopump #treachercollins #treachercollinssyndrome #wonderbaby #licorice
I get asked, “do you make Softbands for Cochlear’s BAHA? Or just Oticon Ponto Hearing Aids?” Since all the pictures are of my daughter’s Ponto. So I borrowed my husband’s Baha5 for some pictures. #deafdad #likefatherlikedaughter
Crisp air, pumpkin pie, Christmas music and making some festive softbands for BAHAs
My kids with capes. But I don’t think they know what super hero’s are...
After PipSqueak goes to bed, I’ll be working on some new DIY safety line ideas to tether her Baha hearing aid to her softband headband...
Shelby's looking pretty darn adorable in her sweater. It belonged to her big sisters back in the day. One of the handful of items Mommy kept around all these years. 😍💗
Thank you so much for writing a review on my Etsy shop. I do my best to provide quality custom service and a quick response time.
I recently read a study saying that 80% of people with a facial disfigurement get harassed or abused on the street. This absolutely broke my heart. The beautiful faces above are the faces of real people with real lives and real feelings. They see you staring at them, they hear you making comments about them, and they deserve as much respect as anyone else. If you have a facial disfigurement and you’re reading this now, please know that you are not required to fit what society says you need to look like. You are beautiful, you are worthy, and you are enough.✨ #bodypositive #selflove #burnscars #cherubism #vitiligo #treachercollinssyndrome #facialdisfigurement #bodypositivity
I wrote a blog about how we got my toddler to stop throwing her hearing aids. https://thebahamama.com/2017/06/do-not-throw-hearing-aid/
New Halloween prints are in stock. All fall / Halloween theme prints are in sale too!
A massive thankyou is in order for these girls for the success of the fundraiser last night. @misskatecollins @beckyhawkes1 @mephamkirsty @hannahmontana24 @katrina1984_ @holliekate86
The time and effort gone into the planning has been huge and the WhatsApp group has been going mental for months. All the organising, making, cutting, sticking, printing, planning, calling, raffle ticket selling and everything inbetween has culminated in what was a brilliant night that made loads of money for Loui (final amount tbc) and most importantly that the little Legend himself enjoyed! They even all chose outfits on the night that wouldn’t clash with the orange colour sashes that Loui adamantly chose! Lol! He had the best time at his ‘party’ with his friends and seeing the buckets of money at the end all for him that will be going toward his ticket to a trachy free life was emotional because the pain and frustration from living with it day by day is so great and people’s generosity is making it a possibility to get there. Some people would be deterred from attempting to raise such a phenomenal amount... but only because of you guys and the support we have, has it been possible to hope we’ll get there someday in the not too distant future. I love you girls for all you’ve done for Loui and to everybody else who donated money and prizes thankyou soooo much! Thankyou to all that came and added to the great atmosphere of the night and another very special thanks goes to Pam Dellow and Joe Dellow who did some amazing singing to start the night, Steve Krafft for the DJ’ing and to Andy Locke who was our auctioneer!
For all raffle prizes won by people that couldn’t attend we will be in touch soon...
#louisarmy #loui #fundraiseforloui #louifundraise #wewillgetthere #treachercollinsawareness #tcsawareness #zebedeemodel #bahaboy #tubiebaby #tracheostomyawareness #treachercollinssyndrome #treachercollinssyndromeawareness
All Christmas Softbands are on sale! And FREE shipping when you order at least 4 items from TheBahaBowtique.Esty.com
Happy birthday to Jacob Tremblay (born:October 5,2006) is a Canadian child actor. His breakout performance was his starring role as Jack Newsome in #room
(2015), for which he won the #criticschoiceawardforbestyoungperformer
and the #academyofcanadiancinemaandtelevision #awardforbestperformance
, and was nominated for the #screenactorsguildawardforoutstandingperformancebyamaleactorinaleadingrole
. In 2017, he starred as August Pullman, a child with #treachercollinssyndrome
, in the drama #wonder
(2017). Tremblay is an avid fan of the #starwars
franchise and named his dog after #district
's character, #rey
. His excitement at the characters #bb8
's appearance at the #88thacademyawards
ceremony was considered a highlight of the evening. #jacobtremblay @jacobtremblay @jacob.tremblay_
Thank you Tara, for your review. And thanks to all your requests, there’s all sorts of new prints available for other families to choose from :)
Hello friends! Walt made his appearance 1 day before he was scheduled to be induced, born on October 1st, 2018! He was born by urgent c-section and was taken to resuscitation room immediately, where an airway was established with a nasal trumpet. His blood has been sent off for formal genetic testing to look for the #TCS
gene, and we will know in a few weeks! Right now, his goals are to continue growing to see what needs to be done eventually. He LOVES mom & dad, HATES diaper changes and baths, and gets tons of love from his sweet NICU nurses when mom & dad can't be there. More updates to come, but this momma is SLEEPY! 😴💙🐼 #treachercollinssyndrome #tcs #ohsu #nicu #nicubaby #walterpanda
Learning numbers. I need to find round GF cereal which also tastes good...
Girly softbands for BAHAs :)
Our family has gone to the children’s hospital in the city 10+ times since PipSqueak’s birth. Way more often that we want to make that trip, but we always look forward to staying at the Ronald McDonald House, and are so Thankful for our home away from home. #ronaldmcdonaldhouse
A couple orders of softbands for BAHAs going out in the mail.
Do children who have hearing loss, just NOT sleep through the night, ever? It’s like she wakes up at 3am thinking: It’s too quiet! I’m going to scream and freak out for no reason what-so-ever.
Can I blame that on hearing loss? We already cut gluten and dairy, the eczema cleared up, we did a sleep study to rule out sleep-apnea, and it’s not night-terrors. Sometimes she needs to go potty, already wet the bed, or wants her blankets fixed. Other than that, I’m running out of excuses for our sleep deprivation...
My darling girl,
You have faced many challenges in your short life, and you have always come out victorious. You are full of bravery, determination, and strength. You inspire me in ways I never thought possible.
There will be times when that crown on your head becomes too heavy to carry alone. May you always remember you have a safe and soft place to rest.
You are a wonder to behold, and I am so blessed to call you "daughter." Thank you for letting me love you and care for you while you grow into the person God created you to be. You have rocked my world in the best sort of way. I love you. ~Mom .
. 📷 @helloannamoos
“Why blend in, when you were born to stand out?” That’s been little PipSqueak’s mantra since conception... or at least since our ultrasound at Pregnancy Resource Center, January 2015. We had just moved and didn’t have a Dr yet... and I was 75% sure I was NOT actually pregnant... As it turns out, PipSqueak not only exists, but is now a happy, healthy, thriving little 3 year old, who likes to see everything as an obstacle to overcome or a challenge to be conquered.
Yay! I’m glad you like your softbands! I’m loving the 1 inch Wide Softband too!
In light of the bestselling book & movie “Wonder,” our family had an interview with a journalist in the UK and here’s the published story: https://stories.swns.com/news/dad-born-with-no-cheekbones-due-to-genetic-disorder-is-a-role-model-for-his-daughter-after-she-inherited-the-same-rare-condition-99945/
It’s been a quiet weekend after a super busy month. Finishing off September with one last softband and DIY kits.
For this last day of September I will do a little throwback for #CAM2018
which is Craniofacial Acceptance Month! We have had our fair share of twist and turns throughout these 6 years since Ayvree was born. Some days are hard; surgeries, kids calling names, parents telling children not to stare. And some days are good; friendly smiles, simple curious questions and people genuinely being nice. I’ve stepped back a bit this year on posting a ton about Ayvrees experiences and that’s EXACTLY why...they are her experiences, not mine. I accepted her and loved her the moment I met her, never did I question my love for her or think she was/is anything less than perfect and the same goes for my husband. That’s what gives me the most hope for Ayvrees future, Josh and I couldn’t be more opposite but we love her just as she is and the people who come across her in life that are worthy of sticking around will stand out and that’s all I can ask. Be a good, descent, kind person to everyone you meet; don’t think twice...just smile and say hello. It’s that simple😊 #lovethyneighbor #treachercollinssyndrome #ccakids #brayvree
This silly messy baby is turning one in less than a month. How can it be?! 💜💜11 Month Stats💜💜 💜Likes💜
*touching people's faces
*grabbing things with her feet
*sitting while playing
*hanging out on the couch with her sisters 💜Dislikes💜
*having her nose wiped
*seeing a toy just out of reach 💜She's getting closer to crawling. 💜She's finicky about eating baby food. You never know when she'll want it.
💜She drinks her bottles like a champ. 💜She pulls her Baha (hearing aid) off every 2.5 seconds.
💜She still goes to bed without a fight. 💜She's wearing 6-9 month clothing.
💜She's vocalizing a lot more. 💜She continues to wrap us all around her little finger.
Look at all those llamas! Or are they Alpacas? We don’t know...
This little missy is only happy sitting up today. So she's surrounded by her favorite toys and she's in baby heaven. 👼
The pack 'n' play keeps her from getting trampled by her five siblings and provides a great view for Mommy. Winning all around.
#babylife #treachercollinssyndrome #littlesister #play
Mucize kızımız Elif’ in birinci doğum yılı anısına hazırladığımız, gebelikte tespit edilen anomalilere rağmen gebeliğe devam etme nedenlerimizi varoluş, mutluluk, hayatın anlamı ve amacı ekseninde aktardığımız, yüz anomalili bireylerin yaşadığı sorunları ve çözüm önerilerini sonrasında kurulan sevgi köprülerinizi paylaştığımız kitabımızın ön satışı başladı. Genel satış yakında başlayacak. Kitabımıza internetten ulaşabilirsiniz. Gelirin tamamı yüz anomalili bireyler için kurduğumuz @yuzumlemutluyum
derneğine aktarılacaktır. Kitabımızın yayınlanmasını sağlayan ve bu süreçte büyük katkılar sunan @arzusandal2
hanıma, değerli editörümüz #suathayriküçük
ailesine teşekkür ederiz. \ Our book including our wonder daughter Elifs journey and TCS awareness issues is published in Turkey. #treachercollins #tcs #genetik #yüz #treachercollinssyndrome
Thanks so much for your review on my Etsy shop. I’m glad you love your softbands!