So one final appiontment left of the year next tuesday then we can enjoy christmas, then the appiontments hit us hard and fast in the new year. We are now looking at late February for his lip operation depending on all the results.
He now weighs 11lb 11oz last time he was weighed so finally gaining a good amount and even at that size he if now sitting up unaided! 3 meals a day are finally settled just need to work on finger foods now.
Last year on this day we were at the Morgan Stanley Children’s Hospital handing Savi off to the nurse to take her into surgery to get her forever smile. I was nervous, scared and anxious for hrs while they closed her cleft. It seems like time has flown by and can’t believe it’s already been a year. We have been so pleased with her results and love her surgeon who continues to check on her. Although that won’t be her last surgery, we have another couple years to relax until her next 2. Until then there will be constant checkups and plans made for her nose repair and bone graft. So far her teeth that have come in have come in correctly and I am extremely grateful for that. #CleftStrong#1in700
Oh my, sweet boy. Tomorrow is the day you gain your forever smile. Mommy is so excited for you, but so torn up at the fact I’ll never see this tongue sticking out cleft smile anymore. It’s the first few of many surgeries on your long cleft journey. It’s a scary thought not knowing what you’ll look like come tomorrow, but all I know is I’ll fall in love all over again.
Please say many prayers for Mr. Greyson as we go through tomorrow. Even more prayers that he can’t have a paci ever again after tomorrow 😅 I think that’s going to be the hardest part. He’s a bit attached. Every prayer, thought, good juju, anything sent our way is much appreciated. 💙 enjoy the evolution of his smile to date 💙
💙 (Story): “Hello everyone! My name is Ethan Alcantara and I am 3 years old. I was born on October 6th 2015 with a bilateral cleft lip and palate. Feeding was the biggest challege for me because I could not latch on for breastfeeding but with the help of Dr. Browns bottle it helped me drink milk anytime I wanted. I've had two surgeries so far. My first surgery when I was 2 months old to close the lip and the second at 9 months old to close my gums and palate. My next surgery won’t be until I am at least 7 years old. It hasn't been an easy journey but I am strong, I am happy and I am loved. My mommy says I have a beautiful smile and no matter what she will always be by my side every step of the way. We are a #CleftProud Family.” 💙 Go to www.CleftProud.com to check out @CleftProud Wristbands, Shirts and so much more in time for the holidays!
Yesterday I posted a video and mentioned how I DIDNT like wearing lipstick. I started wearing it about a year and a half ago. Before, I was a terrible mess: analyzing my lip, scar, how color attracts the eye to the lips (I'm an artist so I looked at everything), being looked at in general. Well I did some soul searching and realized that I'm just as different as "normal" ladies and I should embrace my smile. And I have. Now I own 4 different shades of lipstick. More than I've ever had in my 27 years of life. We're all growing all the time. Love yourself. #cleft#1in700#cleftstrong#cleftlove#cleftpalate#cleftproud#cleftconfidence#cleftcutie#cleftcommunity#lipstick . ❄️💛EDIT: if any of you ladies or gents want to be featured with a little story, DM us!! I know other clefts would like to see yalls perspective on things.
I know I keep saying Beautiful, but it's something that someone out in the IG world might need to hear. Cleft Confidence is an organization that boosted my confidence and I want to give it back to those that aren't as confident. I had a problem with wearing lipstick because of my little upper lip, but I realized, my beauty is just as valid as anyone else's. This is bringing me joy. I love to make others happy and am glad that y'all are loved. More randomness to come. :D #cleftstrong#keepsmiling#cleftconfidence#cleftlip#cleftpalate#cleftproud#1in700#beauty#love @s.artcher
💙 (Story): “Hi! My name is Ebba and I am 14 years old and live in Sweden. I am born with cleft lip. When I was 4 months old I got adopted from Vietnam. Being different in today’s society isn’t easy. From first grade up to six grade was hard for me, people were very mean... they liked to call me things like pig or other names which soon resulted to depression. 4th/5th/6th was not fun at all either. I didn’t wanna go to school just because I was scared of what people had to say about me. I knew I was different and that hurt. I used to get te question: “What is wrong with your lip?” and I would mumble because I always get uncomfortable talking about it because it brings up old memories. But I have kind of learned how to stand up for myself in different kinds of situations. Today I am in 8th grade and have an amazing boyfriend who accepts me for who I am. I just want people to know that life gets better even if it feels like the whole world is gonna fall down. I am becoming #CleftProud !” 💙
🎄✨ We were invited to Fl Hospital Altamonte’s First NICU Reunion. The emotions are so much! We were able to reconnect with all the providers that helped Ariyah thrive into the little girl you see today. They were perfect strangers who have become our real life Super hero’s! For all their kindness, hard work, love & guidance we will eternally be grateful! • It was also pretty cool to compare before and after pics. We’ve come a long way 🙏🏽
meet Ava Rose 🌹.. born 11/21/18 8.4lbs & 20 in
Ava was born with a bilateral cleft lip & palette. I remember like it was yesterday when the ultrasound tech said she could see something not ok with baby and that I should go back with my doctor. Feeling scared and thinking the worse. And from then on, it was appointment with doctors and specialists and testing for this and that. And always being given the worse case scenario because Ava would always cover her face at the ultrasound. I would just pray and trust that God had a plan and he chose me to be Ava’ s mom and that everything would be ok, even though I wanted to ask him the ‘ why me ‘ but I knew I had to stay faithful. And honestly the hardest thing of her condition has been dealing with the stares and the ‘like a normal baby’ comment. Yes, she looks different, but don’t we all?
So far Ava has passed every test, is able to eat with no assistance and has started her NAM. Now we just take it day by day until the day comes for her forever smile ✨
Join us along this journey..
I don't take selfies much....little insecure. But when I do it's when I just shaved. Looking like I'm 25 again. Circa survive shirt. Watching some adventure time with my kiddo. She likes season 9.
💙 (Story): “Hi my name is Safaa (23) and I was born with a unilateral cleft lip and palate. Growing up, I built this idea in my head of what it means to be "normal" and felt that true happiness could only be achieved by fitting into that box. However, the older I got, the more I realized that everyone is unique in their own way and that’s something that should be celebrated, not frowned upon. It's about time we stopped trying so hard to fit into this imaginary mold and instead learn to appreciate our diversity, embrace our differences and cherish our individuality. I am #CleftProud !” 💙 Comment below for a chance to win a free @CleftProud Wristband! 💙
Three years ago we were waiting patiently for Greyson’s surgeon and surgery to repair Greyson’s cleft lip. We’ve been on quite a journey in these last three years. He’s the strongest little boy I know and I’m so lucky to be his mom!!!
#cleftcutie#cleftstrong#1in700 @cleftclub @cleftproud
Funny story about this ice cream shop. As a child I had lots of doctors appointments in Boston because of my cleft lip. After every appointment or surgery and before heading back to Maine, we would stop off at Putnams Pantry for ice cream. It’s was our thing- just me, my mom and dad. It was such a special treat and something I always cherished. My dad would always get butterscotch and marshmallow for toppings, my mom hot fudge and whip cream. I would always get a coffee frappe.
It was only until recently did I realize that the hubs and I live only five miles from Putnam Pantry 😊 I had no idea we were so close 😂 Whenever we go I can’t help remember all the trips me, my mom and my dad made to Boston and all the special stop to get ice cream here on the way back. It warms my heart ❤️
If you are ever in Danvers, Massachusetts it’s right off route 1 North. It’s so cute inside and the sundaes are to die for!!
Happy Saturday my Loves! xoxo
PS: my hubs is cute ❤️
Ayer, en la reunión con las Fonoaudiólogas @lili_poppa y Ana María Morellli, luego de escuchar varias anécdotas, diversas experiencias, casos de distintas fisuras...todo le daba más fuerza a esta frase: LA IMPORTANCIA DE UN BUEN EQUIPO. Más allá de obstetras, neonatologós y más, lo I DE AL es contar con el equipo de Cirujano - Fonoaudioga - Odontopediatra desde antes del nacimiento! La ayuda y contención de estos profesionales yendo a ver a tu bebé desde el primer día marcan la diferencia. Saber desde antes cual mamadera sí, cual no, que si chupete ahora, que si después, tener la plaquita a horas del nacimiento, de que manera alimentarl@...y muchos items más. Así que elijan a el que consideren el mejor equipo (Además de Mamá y Papá...ustedes son Fundamentales). Y si no llegaron a hacerlo durante el embarazo, háganlo cuanto antes puedan...es lo mejor para sus grandes Amores 💕
💙 (Story): Hello everyone! My name is Hayes and I was born with a Cleft lip and Palate. My parents found out at my 20 week ultrasound. My parents were so scared my mom cried and was not sure what to expect. When I was born I was in the NICU for 8 days they taught my parents how to feed me with the haberman. Then we switched to the Dr. Brown specialty system. I had my first surgery at 3 months to repair my lip and second surgery at 11 months to repair my palate. I might need a third surgery on my lip right before Kindergarten because I developed a step where my lip is not quite line up. Then after that I will have my next surgery at 8 years old. My family loved my cleft lip before and after his surgery! We are #CleftProud ! 💙 Download the “CleftProud” App in the App Store and Google Play! Leave us a review for a chance to win a @CleftProud T-Shirt! 💙
Ella jugando a menos de 24 horas de realizada la cirugía! Sí, su cachete estaba bien gordo...es normal que eso suceda. Con los días baja toda esa inflamación. Los brazaletes son para que no se toquen la boquita, pero por suerte ella no quería hacerlo así que los usó muy poco. Y esas pelotitas son las que el genio de @steinbergdiego nos dio el Ok para usar...todo juguete liso, sin puntas, relieves ni pelitos son seguros para el juego, ya que no se pegan ni se enganchan. Así que tengan en cuenta ✅brazaletes (si tienen suerte los van a usar un día) ✅juguetes lisos
✅no asustarse por la inflamación
✅cumplir con los horarios de los medicamentos ✅consultar estos items y cualquier otra duda SIEMPRE a los especialistas (cirujan@s, fonoaudiólog@s)
Lets talk about Cleft palate kiddos and talking!
Before we start let me clarify that the "palate" is essentially the roof of mouth and is broken into the hard and soft palate. Your soft palate begins at the start of the throat. Try running your tongue over the roof of your mouth until you feel it start to get squishy!
Pretty crazy to think cleft palate babies are born with everything open and hollow!
Because of this hollowness, many clefties are not able to create most sounds and consonants. If they do learn how, they often create the sounds incorrectly thus needing speech therapy once their palate is repaired.
So how to you encourage speech? How do you parent these kiddos in their best interest?
For Ezra specifically, he was born with a cleft through the left side of his palate so his entire hard and soft palate is non existent.
We're fortunate enough to have an AMAZING cleft team at @shrinerschicago! Ezra has seen a speech therapist since 1 week old who motions his sounds and who has given us a list of sounds to encourage.
Encouragement of sound is done usually through mimicking baby when they make correct sounds and not mimicking when they try making sounds they shouldn't.
Once Ezra has his palate repair at the end of January, he will be encouraged to make all sounds! Until then we're essentially hoping to prevent the need for speech therapy through discouraging him learning how to make certain sounds incorrectly.
Lucky for me "Mama" is an encouraged sound 😊
Comment below with your experience with cleft speech!
Belated Thanksgiving Post. This picture was totally impromptu. We needed one normal picture before we left for a Thanksgiving Dinner🥘 we were already late too. We got this and maybe one other one. I spend hours of my day literally staring at my little Blogging cutesie area only to realize that I don’t use it enough and that I need to move objects around. But my kids seem to love that there is a corner of the house that has no real purpose since Mommy isn’t using it for what she created it for. 😒. Sorry guys. Im a heavy procrastinator and a super busy one at that but I promise to devote more time to this page and post more of what you guys like. I collected so many followers on my Super Mom page because of the content. I hope my viewers get so much more out of this page. #momblog#supermomblog#superwomanblog#babyblog#kidblog#cleftcuties#1in700#fashionblog#homedecorblog#foodblog#vlog#beautyblogger#superhero#superwoman
There are lots of great organizations that are worthy of donations this #givingtuesday . If you are planning on giving please consider @cleftproud and/or @smiletrain Both are close to my heart as having been born with a #cleftlipandpalate I am forever grateful in receiving some of the best treatment I could as a child. Not all are that lucky, let's give others their #foreversmile#IFB#cleftproud#cleftawareness#1in700
💙 (Story): “Hi! This is our beautiful son Revi. On the 22nd of August 2018 he was born 6 minutes after his identical twin brother Liam. They are quite special as they do not look completely identical because Revi was born with a Bilateral cleft lip (with a complete palate). Both boys have inherited the van der Woude syndrome from their dad (a syndrome that often pairs cleft lip with lip pits, the little pits in bottom lip) We alredy knew our babies had a chance of 50% to get this cleft-related syndrome. And at our 20 week scan, we found out Revi had a cleft lip and Liam had nothing. We were amazed how this could be so different with identical twins! During my pregnancy, I sometimes was scared and anxious.. how will he look, how will people react? It felt so unfair Revi had a cleft and his brother didn’t. However when he was born all our worries were gone immediately. He is beautiful and perfect and we love his cleft smile!! On December 13th, he will have his lip surgery.. For him, it is very important but we will miss his special and beautiful #CleftSmile a lot! Wish us luck, we are a #CleftProud twin fam!” 💙 Go to www.CleftProud.com to check out our Mom, Dad, Brother and so many more family member CleftProud T-Shirts! 💙
It's time to open up and be real about the life I have with my son and his cleft. 💯💯
My son is a incredibly happy baby, but his looks are what everyone see first then his amazing personality. Which is why I'm saying this now if u haven't met my son, I feel sorry for you. TBH I really do.
If u meet him later once he has had his surgery you will see how cute he is once his lip and nose have been FIXED, I call BS.💩 I appreciate more the people who have met him at the way he was born because u had to see past his appearance to love his personality. Most importantly ask me questions that might have felt awkward and in that a true connection with me has been made. I appreciate those questions.😊 I had to explain to children his owie and I love it because they ask and move on to play with him.
I didn't know my son was gonna be born with a cleft, so in my mind I was gonna have the perfect baby (aesthetically) because he IS perfect.😍😍 But going back, I fell in love with a face I didn't know/almost didn't want to accept. This could have lead me to PPD, and I had to be strong to be the mom my son needed. Fast forward to now he will look different again. Which means I will have to fall in love again with a new face. That's a lot of emotional change and stress I've had in just the short 6 months by the time of surgery. I'm litteraly STILL adjusting.
His surgery is scheduled as if now for December 14th. The cause for cleft lip and palette is unsure. It could be genetics, the environment, any amount of variables. I thought it was my fault. It WAS not. 1 out of 700 babies is born with a cleft of some sort.
This part may offend some people but I don't care.
I remember those friends and family who visited me at the hospital, Thank you from the bottom of my heart.
I am not gonna go out of my way to have anyone else "in" my life meet him. I am aware of the people who have said they wanna meet him. I understand I no longer live in Woodburn or Salem or Hubbard but I am in those areas often. I live in Gresham, but is an hour drive really that far to visit a friend and their little one. #cleftstrong @cleftproud #cleftcutie#strongmomma#bravebaby#iftheshoefits#1in700
💙 (Story): “Hi my name is Laura! I was born with a bilateral cleft lip and palate. Ever since I was just 3 months old, I’ve had obstacles thrown at me. People say that I’m very brave because they wouldn’t know how they could be able to deal with all the surgeries and appointments I’ve had to this day. Throughout my life, I’ve learned how to be more confident about myself and be more out there. My gift has taught me more than to just be courageous, it has taught me how to be unique in my own way in the world. I am 16 years old with a passion of dance and helping out in my community. My family and I are definitely #CleftProud !” 💙 Are you @CleftProud? Comment below!
This Thanksgiving we have our beautiful blessing to be especially thankful for! ♥️ I can’t even put into words how full my heart is! I’m so incredibly thankful and grateful for our son, my fiancé and our parents. Thanking God everyday for Michael’s strong beating heart and healthy little body. He’s the most beautiful thing I’ve ever laid eyes on! 💙♥️ Side note- When we found out about his cleft, I immediately thought that I wouldn’t be able to show off pictures of our son like all the other Moms, BUT boy was I wrong! I wanna show him off to the world!!!!! His cleft doesn’t define him, so if you have questions about his cleft, please just ask! I’ll be happy to answer whatever questions you may have. 🤗😁♥️ #cleftstrong#1in700#michaelscleftjourney