Early intervention and diagnosis makes SUCH a big difference. Luke is surely going to have the best possible outcome from his condition. All the best for you guys!
@nathoughton8364
4 жыл бұрын
Absolutely agree. Early intervention is everything! and will set your child up to reach his milestones, perhaps even earlier. Also just being apart of your big family, watching his siblings will be priceless. Xx Love from Australia
@faithinhumanity3390
4 жыл бұрын
My son was born with cancer he lost his eyes from the cancer and he struggled for six years with chemotherapy treatment I’m so happy to say Mason is now eight and cancer free . Mason listens to your channel everyday along with the family I explained everything to him about Luke and he cried we love you
@faithinhumanity3390
4 жыл бұрын
Retinal blastoma was the cancer
@esto4978
4 жыл бұрын
Carrie Boyer my sister had that but only in one eye Congrats to your son on being cancer free
@hudsonamanda
4 жыл бұрын
My daughter has bilateral Rb. Lost one eye and is 16 and thriving now!
@happymama1015
4 жыл бұрын
God bless you🙏❤
@jenngaboo
4 жыл бұрын
I'm so happy to hear your son is Cancer free. I'm waiting to hear that for myself. Xoxox to you and your family.
@jessicagreenfield6889
4 жыл бұрын
I actually have Turners syndrome!! I’m now 25 and I live a completely normal life 😊 I’m so sure little Luke is going to grow up and live a beautiful and full life as well! 😊 he’s so so cute and the happiest little guy!
@kateadams1990
4 жыл бұрын
Hey there! I actually have Turner's too. Nice to see representation out there :)
@lilred-wm3ly
4 жыл бұрын
I have Turner syndrome too
@seonaghdavidson3738
4 жыл бұрын
I am also 25 with Turners.
@mrspaisley1
4 жыл бұрын
30 with Turners and living my best life 😊 prayers for Luke to grow and have a wonderfully full life as well!
@michellebeebelewisfrith1544
4 жыл бұрын
I pray this is so for little Luke . Definitely praying
@morganochs635
4 жыл бұрын
This channel’s comment section is the kindest most positive thing on KZitem. Thanks for making a positive community
@Karen...Grunberg
4 жыл бұрын
I love positivity on KZitem! ♥️ I wish it was not so rare. 💔
@orionheffernan4227
4 жыл бұрын
So true! I love them so much 😍
@toshko4238
4 жыл бұрын
You adopted kid (not positive)🥰🥰🥰
@user-fo6kp6nt5b
4 жыл бұрын
It’s so nice to see how he lets Jessica talk and appreciates how smart she is. I’ve seen so many husbands try to take over or project how much they know. So refreshing!!
@EvadoCouto
4 жыл бұрын
Alicia I noticed this as well! They are such a sweet couple and family.
@whoohoo7
4 жыл бұрын
I agree.
@jessicalemelle
4 жыл бұрын
I love how smart she is...she is so knowledgeable about a lot of things. I first noticed how amazing her brain is listening to her on Rachel’s Podcast. She has such a sweet spirit.
@grain6169
4 жыл бұрын
Alicia That is so true
@kathleenbolanos
4 жыл бұрын
My gosh YES! Watched this today and am soooo impressed
@littlemslovebug
4 жыл бұрын
Luke just took a DNA test turns out he’s 100% PERFECT
@itskaymclaughlin71
4 жыл бұрын
Like just took a dna test turns out he’s 100% that’s baby😂
@TheJleliot
4 жыл бұрын
You must have watched a different video. He will have issues but luckily there's help
@uroKaywiththat
4 жыл бұрын
even when he’s crying crazy 🤯😱🤗
@Karen...Grunberg
4 жыл бұрын
♥️♥️♥️♥️♥️
@_winter_maryrose4684
4 жыл бұрын
ABSOLUTELY ❤️❤️❤️
@Debawcherryinc
2 жыл бұрын
When you said “I was relieved to know this was all normal for Luke” I wanted to cry with joy. My son is on the autistic spectrum and I use that phrase constantly. There’s not something “wrong” with them. They just have different normals.
@kaitlinelizlee
4 жыл бұрын
As a part of the disability community, I can’t express enough how lucky Luke is to have you two as parents. That support and unconditional love and the level of concern of little details like verbiage is going to be such a tremendous help to him. He is so loved, and you two are handling this change of pace with such grace ❤️
@lisabishop8799
4 жыл бұрын
detective urmom you are so wrong, and I find it so ironic that you called Kaitlin dumb.
@ReineDeLaSeine14
4 жыл бұрын
detective urmom Actually some disability groups, such as d/Deaf/Hard of Hearing communities, even have their own culture.
@the_smull_potato3185
4 жыл бұрын
I want someone to look at me the way the chriss looks at Jessica
@arianad2303
4 жыл бұрын
AHHHHHHHH same
@melaniecourville1148
4 жыл бұрын
I'm the same age they are and I'm so jealous of their love. I'm so so single... always and forever. The way they look at each other, the way they talk about each other just so much love. You can tell they're best friends.
@emilymackey5989
4 жыл бұрын
🙂🧐 donr
@Honorbright24
4 жыл бұрын
the_smull _potato 👀 hows that?
@sherrilynn33
4 жыл бұрын
Yes, agree
@BellerTheYeller
4 жыл бұрын
Jessica, as someone who has taken an ungodly about of challenging genetics classes, you did a really good job explaining genetics.
@kfully7517
4 жыл бұрын
Bella Monk this is so wholesome to know actually, it shows how much research she did into this(and continues to research)to be the best mom she could be 🥺♥️
@ellesreviews8367
4 жыл бұрын
What a nice comment! 👍🏻
@naomirose2779
4 жыл бұрын
Bella Monk right? She did a solid job in explaining it!
@catapatata
4 жыл бұрын
Just a little correction, Down Syndrome is a 21 trisomy
@heyyitsrileyy2674
4 жыл бұрын
Although I don't have Luke's specific syndrome, I have a rare genetic brain disorder called congenital bilateral perisylvian syndrome. My parents were told that I would have seizures, speech and cognitive delays. Early intervention is key. I got into speech and occupational therapy when I was two. Now, I am an engineering major in college with minor speech delays. Like you guys said everybody is an individual and different. More people need to know about these genetic/chromosomal disorders.
@joaillere
4 жыл бұрын
I cried when you mentioned he's getting Early Intervention. I am an early intervention teacher in my state and I am afraid we are underserving our communities because people don't know its an option, but because we operate under FAPE we can not advertise our services. PLEASE PLEASE PLEASE talk more about how EVERY child 0-3 has a right to an evolution to identify potential delays AND early intervention services if they qualify. You did exactly what we want and that's to go to your local early intervention provider and ask for an Eval! Thank You Thank You Thank YOU!!!
@catietommo
4 жыл бұрын
Annie I just learned about early intervention in a class. It’s such an amazing resource. You’re doing a good thing ❤️
@joaillere
4 жыл бұрын
Catie Tomlinson 卌 hooray!!! What are you studying?
@mfreybu
4 жыл бұрын
Annie what does the initial evaluation entail? Is there a cost? And what types of things should a parent look for when deciding whether they think they should have it done?
@joaillere
4 жыл бұрын
If you have any developmental concerns for your child you should have a visit with your pediatrician to talk about them. If you do decide to get an evaluation the best place to start is by asking your local school district about “Early intervention” and that you live in the area. They will direct you to someone like me who comes to the home to observe the child and ask between 20-200 Yes or No questions. This interview may take a few hours or one hour. Here we look for a half age delay in one of the five domains of development; cognition, physical, social emotional, adaptive and communication. If I find the scores say the child is functioning at a 6 month level and the child is 12 months we meet again do offer therapists and make goals; therapists come to the child’s natural environment and work with the families schedule.
@mfreybu
4 жыл бұрын
Annie Thanks so much for sharing your knowledge 💕
@MisNorm98
4 жыл бұрын
As an adult with a disability, thank you for understanding that this is Luke’s normal. Please know that many adults with disabilities prefer that term, disability is not a “bad” word
@KarenTodd23
4 жыл бұрын
I studied genetics at university and the phrase that we used a lot was 'genetic variance'. I like that as an inclusive term as we all have variances in our chromesomes, we just don't all know the full extent of it!
@katelandd18
4 жыл бұрын
Im a pediatric nurse practitioner and I want to give you extra props for the way you explained so much of this. You did great! Honorary scientist!
@nicolesanchez4954
4 жыл бұрын
Kpitch18 I concur! You both did a great job covering all the bases so to speak. Especially being new to special needs parenting. Luke is a lucky kid to have confident and experienced parents like yourselves. Thank you for sharing. You are helping others more than you will ever know.
@sherrilynn33
4 жыл бұрын
Agree
@greta5335
4 жыл бұрын
yeah right
@cmreker
4 жыл бұрын
Luke just took a DNA test, turns out, he's 100% adorbs.
@HeatherWeitz
4 жыл бұрын
What he has is the best parents he could ask for. Sending lots of love to your family.
@greta5335
4 жыл бұрын
"Turner syndrome is a rare chromosomal disorder that affects females. The disorder is characterized by partial or complete loss (monosomy) of one of the second sex chromosomes. ... Most women with Turner syndrome are infertile."
@bluebirdtoot
4 жыл бұрын
@@greta5335 bet
@greta5335
4 жыл бұрын
Grace bet.
@bluebirdtoot
4 жыл бұрын
@@greta5335 I bet you're not really deaf
@greta5335
4 жыл бұрын
Grace i can’t hearrrr you shut up
@loveland852
3 жыл бұрын
Here after Luke took his first steps at right around 15 months. He’s already exceeding his own goals!
@ttaylor3294
2 жыл бұрын
Same! It’s amazing!!
@toribearfield2068
4 жыл бұрын
Speech Therapist here! I love your videos and little Luke is adorable. When you talked about milk coming out his nose, I thought of a sub-mucous cleft palate. This can really affect feeding in the young ones, but can also be repaired. If he hasn’t been checked, maybe have it checked. It’s really subtle and can be easily overlooked. :)
@32smithm
4 жыл бұрын
Tori Vasbinder I thought that too (cleft mom here!) Cleft’s can also be associated with other chromosomal abnormalities such a Luke’s as well so worth looking into.
@megansmith8188
4 жыл бұрын
I’m a Speech Therapist as well! I was thinking the same thing xx
@kristaequestrian
4 жыл бұрын
I’m a speech therapist too and was thinking the same thing!
@Rachael_Brielle
4 жыл бұрын
Tori Vasbinder SLP here too!! I was thinking the same thing.
@mylufCGH
4 жыл бұрын
Not a speech therapist here but I really hope they see this comment 😅
@thefreylife
4 жыл бұрын
Thank you so much for sharing this part of your journey.
@hayleymarse2853
4 жыл бұрын
I love that y’all watch the Ballengers!!
@chloeglynn2054
4 жыл бұрын
Hey Mary and peter!!! Love your videos especially Ollie
@paulmays3156
3 жыл бұрын
How much baby weight I'm a wait Paul Mays
@paulmays3156
3 жыл бұрын
Jessica Alba mom Chris you good day Paul mays Little Luke P
@jodiethewriter
4 жыл бұрын
Hello, Ballinger family! I just wanted to let you know that I'm sending prayers and blessings your way. I just wanted to let you know that I have a condition called 22q11 deletion syndrome, also known as DiGeorge's, so I'm kind of in the same boat as Luke. I just wanted to let you know that there is a very good chance Luke could grow up and live an almost completely normal life, just with a few extra challenges that most people don't have to deal with. My conditions include scoliosis, arthritis, a cleft palate, and hearing loss, all of which came as a result of 22Q. I'm now nineteen years old and in my second year of university working towards a journalism degree with the dream of becoming a hockey reporter once I graduate. I just wanted to share my story with you so that you could have some peace of mind about Luke's condition. He may have some extra challenges in his life, but he has such amazing parents that I'm sure he will be fully supported the whole way! Of course, it's too early to tell now because he's so little, but whatever challenges he may have, I'm sure you will find the best way to manage them and support him the whole time. You will also have the support of your subscribers the whole way! We love Luke! Much love, Jodie
@annieslife9295
4 жыл бұрын
Hey! My brother also has 22q11 deletion syndrome and he’s growing up to live a perfectly normal life too, so glad to see you’re doing so well!
@beverleypicard2116
4 жыл бұрын
Jodie Cooper that was super sweet and thoughtful words Jodie I’m sure they appreciated hearing that . Sending prayers and blessings your way also !❤️
@ViiviB13
4 жыл бұрын
Good luck with your university degree I bet you will be a great reporter 💗
@tinamarie2121
4 жыл бұрын
Hi, Jodie!! My cousin also has DiGeorge Syndrome! He will be 20 next month. I can't recall exactly which form DiGeorge's he has; John had to have heart surgery when he was a couple week's old and has had several more since then. He just graduated from high school last year. He's just an awesome kid, and I'm so proud of him. I'm so excited to "meet" someone else with DiGeorge's and to hear how well you are doing! ❤️✌️
@jennkubicza
4 жыл бұрын
My friend has DiGeorge syndrome- he’s been trying to connect with other adults!
@MsHolli09
4 жыл бұрын
'Even if we did have the answers, Luke is still an individual.' Thank you for saying that ❤️ as someone with disabilities I've had people shove me in a box without getting to know me and it drives me crazy. We're all different! I hope you get some more answers soon and that little Luke gets the best outcome xx
@seonaghdavidson3738
4 жыл бұрын
As someone with Turners Syndrome I just want to thank you for sharing Luke's story and talking about Chromosomal disorders. One of my biggest frustrations growing up is the lack of awareness for my condition and others like it and know that you sharing Lukes story with everyone will raise awareness so much. I love you guys and I can't wait to watch Luke become another amazing ballinger like his siblings.
@carolineandersen3705
4 жыл бұрын
I have Turners syndrome too. I can’t tell you how many times growing up I was told to “control my handicap” or have been teased for my hight
@gracestanton3213
4 жыл бұрын
Seonagh Davidson I also have Turner Syndrome ! It’s so good how these guys are raising awareness for genetic/chromosomal disorders/abnormalities! I hope Luke is all okay! X
@greta5335
4 жыл бұрын
no you're not ur cool
@ImzC05
4 жыл бұрын
@@gracestanton3213 I'm 15 with turners, these comments are amazing!!!
@xenite29
4 жыл бұрын
Same here!!!
@Bhattlydia
4 жыл бұрын
I know you said you don’t like the work “abnormality”, I’m in nursing school and the word for pediatrics that is common is “anomaly”. I know not everyone may like it but it is a word you could use if you’d prefer. Or you could come up with something cool and creative! Lots of love and support for you guys and your family! 💕
@moonchild_778
4 жыл бұрын
@detective urmom please don't be unnecessarily rude. No need to give hate to someone trying to help, think about how you would feel
@HeatherPendergast
4 жыл бұрын
I love that. Anomaly sounds more magical and less like “ur a freak”
@brickzzzzzzz
4 жыл бұрын
I would use American sign language for Luke if he won't be able to talk well until he's a bit older, so that you guys will be able to communicate with him 😊
@mirandapriest4934
4 жыл бұрын
Not only would it be a good way for him to comunicate if he yas speech troubles but it would be a nice language for the whole family to learn(and fun too)
@de4830
4 жыл бұрын
Courtney Lamping he’s also got an uncle who sometimes uses asl (Brent)
@smurchison2
4 жыл бұрын
That’s what I thought too! It could be a fun thing for the family to learn while he is growing up (I know ASL :) )
@krystinagrillo179
4 жыл бұрын
@@de4830 Trent :)
@SimplyTab
4 жыл бұрын
when i couldn’t talk fully yet i used the sign for more for a lot of things if i wanted something or to do something
@morganf4378
4 жыл бұрын
I also have 3q! (Partial mosaic trisomy 3q2). Genetics is amazing, isn't it? PS the disorder made my chin small too. I see why there is resistance to using the word 'abnormality', but using 'chromosome' before it clarifies what is abnormal. I don't think anybody thinks of anything negative when they hear "abnormality" about someone. At least, I haven't . ~ The chromosome is abnormal, but it makes everybody normal since genetics aren't perfect. ~ On another note, I actually tell people I have a chromosome disorder instead of abnormality, so I'm with you on that. Congratulations on the answers!
@morganf4378
4 жыл бұрын
@@tosicnikola10 I do not have 3q29, but 3q2 and it's not a micro deletion.
@morganf4378
4 жыл бұрын
@@heatherrush6362 What about it?
@michaeldetwiler1
4 жыл бұрын
Luke couldn’t have been born into a more loving family. I love them so much!
@nofearinlove
4 жыл бұрын
Welcome to the world of rare diseases... Feb 29 is Rare Disease Day and I really appreciate that you're using your platform to bring awareness. My daughter has a rare disease (heterotaxy) and we know well that medical research and knowledge is always ongoing. You guys are doing a great job!
@SillyParasaurolophus
4 жыл бұрын
What disease is that? I’ve never heard of it. I’m quite interested in rare diseases and genetic disorders. I
@oliviademarest1755
4 жыл бұрын
I am currently getting a masters degree in human genetics-- I'm sure there are countless other resources available, but if you guys ever have questions about the genetics jargon I would be happy to help 'translate'
@Swirlofcolours
4 жыл бұрын
Olivia Demarest great choice!!
@isobeldoyle3783
4 жыл бұрын
Awwww that is so sweet, I hope Jessica and Chris see this x
@lauradfbotler8592
4 жыл бұрын
Same! And I actually study a specific gene that is in this exact chromosome and very close to this location (3q13.31), so I'd be open to chat!
@Glesga_lassie
4 жыл бұрын
Hey, do you have a twitter or any way I could contact you in private? It's about my baby who had a rare condition that had never been seen before prior to her. Thanks
@grain6169
4 жыл бұрын
Olivia Demarest that is so nice to offer! I needed to read something like this today.
@cjbeckerc
4 жыл бұрын
I have a couple in my life who have a child that has a deletion on the 3rd chromosome. They’ve been amazing parents for the child. I may be able to connect you with them if you have questions or are looking for advice.
@banditomcmaniac6576
4 жыл бұрын
Sick
@reneebeauregardlute3330
4 жыл бұрын
You are going into this with the BEST attitude. Luke is awesome, and so are you guys. I have three kiddos, and my six-year-old son is autistic. Being open to adjusting expectations, celebrating every milestone, and loving each child for who they are is the best possible way to approach this, and you are already doing such a fabulous job. We’re an OT family as well, and it has been phenomenal for our little guy. ❤️
@evag-s5177
4 жыл бұрын
I'm autistic and was in OT as a kid and it was incredible. I remember leaving every week feeling so much more regulated and in control of my body.
@reneebeauregardlute3330
4 жыл бұрын
Eva G-S I love hearing that, Eva! Simon loves it too - especially his time in the OT gym! (He’s a big sensory-seeker, so lots of time on the trampoline, climbing wall, and in the ball pit and fabrics are right up his alley!)
@treblehearts
4 жыл бұрын
i’m aspiring to be a pediatric OT ❤️
@wendystockman8654
4 жыл бұрын
You guys are such amazing parents! Luke is so lucky to have you both.
@janesmith7615
4 жыл бұрын
Coming from a third year genetics student - you did a pretty great job explaining all things chromosomal! You two are the best possible parents and whatever happens he’s so lucky to have you! Xx
@fdxxs1
4 жыл бұрын
genetics specialist here.. it was wrong. But that’s ok. The details don’t matter
@janesmith7615
4 жыл бұрын
bananalove i agree however I t’s a lot to take in I’m sure so I think they did well to explain it how they did
@nps1bps
4 жыл бұрын
As a Kindergarten teacher, your comment about having a diagnosis opening doors to services is really important! It can be so frustrating to know a child needs help, but not have those supports due to a lack of diagnosis. I’m so happy that you all have this answer that will get Luke the support he needs and opens the door to more answers!
@samsweeney1057
4 жыл бұрын
I'm a developmental specialist for early intervention and work with lots of kiddos and this makes me so happy that you are talking about this💕
@evag-s5177
4 жыл бұрын
We love Luke! I'm autistic and had developmental delays as a kid, and I know it's not the same, but I thought it might be comforting for you to know that I like the way my brain works and would never want to change it. It's awesome that you guys recognize that Luke is on his own timeline and celebrate his differences.
@thehussynexgen
4 жыл бұрын
Thinking in a detached way, you being his parents is awesome for Luke’s condition in that you document a massive portion of your lives, Luke’s journey can be tracked, which is great for anyone around the world who may have a child which is also born with the same condition. You are awesome people, awesome parents. I love you all so much xxxx
@aimeejay3966
4 жыл бұрын
We love Luke! We are all so appreciative of you both sharing Luke’s journey & his updates with us, thank you. We all love your family 💙
@stephaniedurand7993
4 жыл бұрын
I agree knowlege is power :)
@greta5335
4 жыл бұрын
Well that's so dumb!!! I only love people named carrot. Also as a french fille, i feel disgusted that they didnt spell Luke "Luc"
@emryswalton1802
4 жыл бұрын
I have ASD, Tourette's syndrome, SM, OCD and a few other things. I know ASD has been linked to 3w28 microdeletion syndrome, and I wanted to say he's perfect! He's going to accomplish big things, I know it. Also, you are so lucky he got diagnosed so early, because early intervention is so unbelievably important, and for those of us who slip under the radar, life can be much harder. He is also lucky to have such amazing parents! The love is there, and the medical knowledge will come later hehe I wish my parents had acted on the differences they noticed, because I would be a very different and happier person. He's got the best family, because even though they don't have much background knowledge, they CARE and are willing to learn! I'm so happy for him, and can't wait to see how awesome he becomes :)
@therealjoebobsicle
4 жыл бұрын
You sound awesome.
@emryswalton1802
4 жыл бұрын
@detective urmom I can. He's in a family of awesome people, and he's already lifting his head and he conquered the feeding problem.
@yasianay
4 жыл бұрын
Hi sorry to bother, but could you explain what ASD is? I don’t think I’ve heard of it before!
@emryswalton1802
4 жыл бұрын
@@yasianay ASD stands for Autism Spectrum Disorder. :)
@yasianay
4 жыл бұрын
Eli- Neftali Elijah Zerachiel Ekander Whiting Thank you :^)
@gracieolivares
4 жыл бұрын
God couldn’t of picked better parents for Luke. He’s going to grow up strong and loved. You guys are amazing!!!
@jessguad4104
2 жыл бұрын
Here 2 years later. I wish Jessica and Christopher knew the adventure they had in store! Luke is such an amazing little guy! He has worked so hard in speech, PT, and OT. He is an amazing child
@Anna-Ohman
4 жыл бұрын
No matter what lies in the future, Luke will always be one very lucky young man. He has amazing parents, siblings and extended family who will never stop loving and looking out for him.
@Cammz13
4 жыл бұрын
we have a negative connotation associated with words like “abnormality” but in reality it is just something that makes someone different or rare, which isn’t bad at all❤️.
@146shell
4 жыл бұрын
I have Turner syndrome. I’m 36 and married to an amazing man and living a normal life :) x
@cecegrace4370
4 жыл бұрын
Baby Luke was born into the right family! He's so blessed to have such dedicated, loving, and attentive parents. ♥️
@WendieBird
4 жыл бұрын
My son was born with a deletion in chromosome 13. Also very rare and we work with his genetics doctors to help further research. We had a lot of the same issues (feeding, slow weight gain and so on). He’s a healthy, happy 12 year old now. He’s about the size of a 7 year old. It’s always a strange feeling when you see or hear someone else talking about these rare chromosomal abnormalities, it doesn’t happen often. The relief is hard to explain when you finally have an answer. Good thoughts to your family and your special little blessing!
@movielady28
4 жыл бұрын
As a 42yr woman with Turner Syndrome thank you for mentioning it. Over the years I have struggled to find a Primary Care Physician who even knew what Turner Syndrome was. You are doing a great job with little Luke! Luke's chromosomal difference is just a unique thing about him.
@kytrenarenee6031
4 жыл бұрын
I just took a DNA test turns out I’m 100%... loved 🥰 we love you baby Luke!!
@hayleymarse2853
4 жыл бұрын
I love the way you approach this. Having “disabilities” and differences is what makes us unique and isn’t a bad thing. I love that you are exposing so many people (especially kids) to things that they wouldn’t have known about otherwise. I have type one diabetes and although it’s either due to genetics or your immune system malfunctioning randomly, I’m positive it was from genetics because my younger sister has it as well. It used to be something that made me feel completely isolated but since I’ve discovered the online community for diabetics it has helped my confidence so much. Even though I don’t have any chromosomal differences or disabilities, I appreciate this video so much because it brings light to people who have differences
@vixrouth8479
4 жыл бұрын
I wish I had known about my eldests disabilities when she was a baby, it would have made life so much easier. She is 14 and utterly awesome now but we have a LOT of hurdles to jump. Knowledge is power and "labels" are just a way for others to understand roughly how you work! Much love to you all!
@Jaimi_Crystal
4 жыл бұрын
as someone with a disability, my advice in terms of what to call his "abnormality" is to find a word you are comfortable using and don't worry about offending others. this is Luke's situation and journey so you as his parents, and he when he gets older, are the ones who can decide what the right term is for him. for example, with me im very okay with the term disabled yet i've had friends with the same disability as me not like that term for themselves, they prefer the term differently abled so when i'm talking about myself i use the term i'm comfortable with (disabled) and when i'm talking to them about their situation, i use the term they are comfortable with (differently abled).
@graciehadlich
4 жыл бұрын
Jaimi Crystal preach! Also have a disability!
@Scz-wu9fh
3 жыл бұрын
Fellow person with a disability here. Mine is a spontaneous genetic mutation. I personally prefer “disorder” personally.
@charlottetucker378
4 жыл бұрын
He’s going to grow up to be beautiful no matter what ❤️❤️he’s a Ballinger after all, and will have such a WONDERFUL life with a family like yours.
@user-mb7ix6mf5d
4 жыл бұрын
You should write a book: “Clueless: But doing my best” ❤️❤️❤️❤️❤️❤️
@1daughter1son
4 жыл бұрын
The forward should say 'I am not a doctor or a scientist'
@HeraRose
4 жыл бұрын
Haven’t seen the whole video yet but I wish the best for little Luke. He is so sweet. ❤️
@corysmeland320
4 жыл бұрын
My son has Downs Syndrome and he is the light of my life. He was born with an imperf-orate anus as well but he was surgically fixed so he has bowel function.
@irispostema
4 жыл бұрын
Imagine that in a few years someone else will get this diagnosis for their child and they will have a lot of footage of Luke, that will be so helpfull because they will know more about what they can expect.
@galaxiiluna
4 жыл бұрын
I recommended watching the channel SBSK! They helped me understand things like this from a more emotional point of view than a medical one. They show a lot of children with very very rare conditions
@dollsNcats
4 жыл бұрын
Luna Vail oh my this is my favorite channel ❤️ it’s made me really want to really work hard and work with kids or adults with different ability’s
@Ellie.A
4 жыл бұрын
Yes, it's a really good channel.
@BumpiSegeek
4 жыл бұрын
I was just going to comment the same thing!
@eeyoresballoon9886
4 жыл бұрын
Yes, they're amazing!
@s0phian0va
4 жыл бұрын
The BEST channel highlighting people with differences! Highly recommend! SBSK is excellent.
@alexandrabarraza8302
4 жыл бұрын
Jessica and Christopher are so warm and genuine parents. Their love for their kids is so true and visible through my screen ❤️
@mfp4523
4 жыл бұрын
"I wouldn't wish him any other way" Parents of the year!!
@rebeccahenson1234
4 жыл бұрын
Thank you so much for sharing this with us. I’m pretty sure you’re about to have a whole new community watch your videos now. I’m a long term subscriber of your channel and always loved watching your family grow up, but now, being the parent of a special child myself, appreciate the journey you are beginning and know the community that will now welcome you. By sharing your journey you are helping to raise awareness that difference and diversity is beautiful xxxxx
@Taylor.Wiseman
4 жыл бұрын
My psychology 300 level class in college was called “Exceptional Child and Youth” and I was all about children with different chromosomal structures, autism, cerebral palsy etc. So I’d say he’s Exceptional ❤️
@denisegreene8441
2 жыл бұрын
Cerebral Palsy is not a chromosomal disorder.
@trwjcs2010
4 жыл бұрын
I just want to take a second to tell you guys what a wonderful job you both are doing. Being a mom of a 6yo who is autistic I know all too well how it feels to not be a scientist either 😊! So you guys are already rocking Lukes journey on this road and it is so inspiring to see how much of an advocate you both are in his life! Like you say... everyone is different. And he is in no way less than any other person, just like my sweet Abrahm. 💙 So thanks so much for sharing this journey with us!! You guys are all in my continued thoughts and prayers 💙
@stephanieraebel8160
4 жыл бұрын
therapy for little Luke is his wonderful brothers and sister. Mom and dad of course always. With all the talking and happiness and fun in your family, that little guy will excel by leaps and bounds. But remember to take your time and just enjoy everything with your children. God bless and thank you for sharing. I learned A lot from you. Thank you💟
@gretchenmerrick8963
4 жыл бұрын
You all are the BEST and I know Luke will do wonderfully with all the care you will give him as well as any help he may need - (he also has wonderful brothers and sister to help as well)...GO BALLINGER FAMILY!!!! lots of love ❤ from a girl with Turner's Syndrome
@cassidygoodspeed983
4 жыл бұрын
Hi Ballinger Family!! I’m an almost 20 year old who was born extremely premature and I have hydrocephalus and mild Cerebral Palsy. I just wanted to share with you guys that doctors told my parents that I’d never walk or talk or be independent and I’m now living on my own in my second year of college! Early intervention is KEY!! Praying for him and all of you! Love you guys❤️❤️❤️
@mommyteacher2961
4 жыл бұрын
So THIS is the reason he's EXTRA EXTRA cute, scientifically speaking, right? ☺️
@Ashloumaly
4 жыл бұрын
The comment section is sodding epic on this video! People picking up and helping other people, it's beautiful ❤️
@tonisangel5024
4 жыл бұрын
Jessica and Christopher I'm so very happy you now are getting more answers and understanding Luke's condition. I feel you will also feel so relieved when you meet with the scientist at Emory how blessed to have access to this man ! He will really be a blessing for y'all. I really understand about celebrating the individual on what he is capable of my niece has down Syndrome and when she excels at school reading math writing it's such a celebration!! Luke is such a fighter and I have such a wonderful feeling Luke is going to surprise everyone he's such a precious strong soul and with you both as parents and the blessings of wonderful Drs Luke is going to be fine! Y'all are such beautiful people God knew exactly what he was doing giving Luke to y'all. God Bless your beautiful little Angel I cant wait to watch him excel and just be the kindest loving soul that he is!! Big hugs and lots of love ....Camille ❤😇🙏😘
@carolineandersen3705
4 жыл бұрын
Thank you guys so so much for making this video. I am danish 20 YO girl with Turner’s syndrome. This video made me an even bigger fan of your family (didn’t know that was possible). They way you talk about the word abnormality is so amazing. I don’t have count of how many times I have been told to “control my handicap”, or been teased for my hight, but my family and friends have always been the greatest support I could ask for. It is amazing that a people with as big of a platform as you speak out about this so once again thank you from the bottom of my heart for doing this. Sending precious little Luke and your whole family all the way best on the road to figure out what life will be like for him - one thing is for sure, he has the best family to be there with him on this journey.
@dahalochick
4 жыл бұрын
I want to thank you both for being so open about this, speaking on it, and most importantly, wanting to get involved with the research. I have Turner Syndrome, which you mentioned early on in the video, and February is Turner Syndrome Awareness Month. It's so important to be learning more about chromosomal disorders and finding as many answers as possible. I have no doubts that Luke will have a happy, wonderful life. I'm sending your entire wonderful family love and positivity
@carolineandersen3705
4 жыл бұрын
Gina Giannetti no way I have Turner’s too and I did not know that it has an awareness month, that is so great.
@dahalochick
4 жыл бұрын
@@carolineandersen3705 Wow, it's rare I run into someone else with Turners! I'm a part of a few TS Facebook groups, that's the only reason I know it has an awareness month!
@neeajunkkarinen9882
4 жыл бұрын
I have partial turners too! 😄 it's so weird I've never interacted with anyone with my condition before! There aren't many of us in Finland let's be honest...
@carolineandersen3705
4 жыл бұрын
Gina Giannetti yeah me too. Thank for telling me, I will look into that Facebook-group. Where in the world are you from ?
@dahalochick
4 жыл бұрын
@@carolineandersen3705 I'm from New York! Where are you from?
@marisamitchell8611
4 жыл бұрын
I have been sick for my entire 39 years on this planet. I FINALLY got a diagnosis last month. Finally knowing what is wreaking havoc in my body was surprisingly a weight off of my shoulders & validation that there is something going on, it's not in my head. I am so glad that you guys finally got a diagnosis so that he can receive the exact medical care he needs. Sending lots of hugs & love!
@macmonkey2925
4 жыл бұрын
Luke is surrounded by such love and with that, he will thrive and be the best Luke he can be! ❤️Continuing to send all the prayers and strength to you all.
@numbaonegleek
4 жыл бұрын
Welcome to the club!! Ik he's not considered "disabled," but my big brother is. He has an extremely rare syndrome, with only about 10 kids around the globe with it. I've spent half my life in hospital waiting rooms, and sometimes, I couldn't stay in the hospital with him. I know it's difficult, especially during this time, but it will get easier. You and your family will get used to your new life.
@LindseyCox1022
4 жыл бұрын
We love Luke! So glad I got to catch the livestream today, your family is such an inspiration. Love you guys!
@ccolover1
4 жыл бұрын
Hello lovies! I was born with bilateral hearing loss, another "disorder/abnormality" and my parents cried and cried when I was a baby because everything was so uncertain. But you know, even when all the studies say life would be bad because I'm not normal, I still ended up with a masters and I have the best time doing disability advocacy when I can. I wanted to say how wonderful you are and that lil Luke can do ANYTHING with the love and support you give him! Things might be harder, but he and you will be so strong from it! Wishing you the best!
@oddballaudrey9654
4 жыл бұрын
I hope he’s ok he’s adorable and I will be praying that he will be ok for the rest of his life🙏🏼
@undreadly
2 жыл бұрын
the part where you guys talked about HIS normal and saying that youre happy to be following where HE can go made me want to cry. im autistic, which obviously is very different, but as someone thats considered "different" im so so happy to hear parents just happily accept that difference and be more than willing to follow their kids normal instead of anyone else's. its so hard growing up "different" when people you look up to expect you to behave based on a concept of normal thats entirely foreign to you. i also really appreciate you guys saying you dont like the terms abnormal/disorder, it does definitely depend on the individual to see what word they identify with but i appreciate that you guys are conscious of that at all, it means a lot. :)
@blaykerekowski9820
4 жыл бұрын
I have an aSymmetrical cerebellum too!!
@deana6633
4 жыл бұрын
Don’t limit his potential. He will be able to do amazing things with your love support and patience. Which I know the two of you will accomplish for him everyday.
@thomsonclan5878
4 жыл бұрын
With my little boys I taught them baby signing, if there might be a speech delay, might baby signing be something you look into? I know of someone who is autistic and had a speech delay and when they started doing signing with him his speech has come along but also helped with his frustration. I love your way of looking at life 💕 my sister is serverly autistic and has no speech so I was brought up with this attitude too ☺️
@cutegirl-sz9kz
4 жыл бұрын
yesss
@greta5335
4 жыл бұрын
im deff, thats not funny
@iWuvHuskys
4 жыл бұрын
@@greta5335 it's not supposed to be funny? What's insensitive about it? Sign language would be pretty useless if hearing able people didn't learn or understand it.
@greta5335
4 жыл бұрын
@@iWuvHuskys I'm deaf, that's not funny.
@delaney7435
4 жыл бұрын
@@greta5335 ngl, can't tell if this is a joke or not. But go off
@ncskitty
4 жыл бұрын
I am an ABA therapist for kids with autism. Getting therapies/treatment as soon as possible is so important. I'm so glad you guys already have so much support for Luke! I've seen my clients make a lot of progress when they start young and get the help right away! Like you said, it's exciting to celebrate their different milestones and the smallest things can be so exciting.
@tieragibbs3045
Жыл бұрын
ABA is harmful.
@Danijean85
4 жыл бұрын
Christopher looks so tired. Love you guys so much and glad you have some answers and guidance.
@denisejones7780
4 жыл бұрын
I thought Chris just got a little teary eyed when he was thinking of all that may be in Luke's future, I think he will get the help and support he needs with that great family.
@YummyMummyKate
4 жыл бұрын
I found out about my daughter's condition when she was two, you're right, finding out this early is key to finding all the help and support you need for Luke. Wish nothing but the best for you all. 💙
@hollymilo3006
4 жыл бұрын
Awww he has the right parents. My brother and sister have fragile x. That’s where there is an extra part to the x. When my mum was told this there wasn’t any social media to talk about, get information from so please keep sharing your story.its reassures and help loads x
@KH-zw5wj
4 жыл бұрын
Holly Milo My son has FX also.
@madisoncreighton7140
4 жыл бұрын
I have fragile x too. Haven’t met too many other people who have even heard about it
@hollymilo3006
4 жыл бұрын
You guys are never alone there’s a.ways all of us❤️ wow that’s the most people to say they have fragile x I heard from x
@katherinescanlon9036
4 жыл бұрын
Used to work with a boy in a classroom with fragile x. Great kid ❤
@caprisun1845
4 жыл бұрын
Luke is so lucky to be born in your family! He's such a cute little boy! Sending all my love from Belgium ❤
@mabyyy485
4 жыл бұрын
Luke is so blessed to be born in your family Jess, he will grow up in a family full of love and the environment affects a person’s growth so we are sure that he will be okay growing up 💕 Also, God bless your doctor for suggesting these other doctors and tests. Sending you guys all the love 💗
@pianotilesmaster1017
4 жыл бұрын
Luke looks so much like Christopher! He is so lucky to be born in such a supporting family! I hope for the best :)
@yarnmom816
4 жыл бұрын
We love Luke, and the whole Ballinger family, so very much. Thank you for constantly being so open about your journey as it creates an opportunity for my wife and I to talk with our children about so many important topics. You truly are amazing parents. Sending lots of love to your sweet family. 💗
@cymbiesMommy
4 жыл бұрын
you are light years ahead of most parents. There are so many who can not accept their children and love them as they are. So many not even aware of their ableist views. I have so much respect and admiration for you as people and parents. Luke will be just fine because you're already loving, supportive, accepting of differences and meeting him where he's at. I'm so proud of the way this was presented to the world. kudos to you both!
@evelynsurowiec
4 жыл бұрын
I love you all, and I am so glad that Luke can be with us today. You all inspire me everyday to do my best and live life to it's fullest. code: WE LOVE LUKE! ❤️
@allisonpoynor4457
4 жыл бұрын
Who else immediately looked up 3q29 microdeletion syndrome after watching?
@JennaSullivan112
4 жыл бұрын
What a blessing that he would come into your family. Amazing 💕💕
@jennagrace1534
4 жыл бұрын
I’m so glad you were able to get a diagnosis for bb Luke. It sounds like your doctor is really proactive at research. I know a lot of disabled and ill people struggle to get a diagnosis and find a doctor who is willing and good at looking at all the possible causes of their symptoms. You have already made his life way easier.
@StillJustDenise
4 жыл бұрын
Just as anything else,I'm thankful Luke's issues have a name! The unknown is always so much more frightening! If there is anything we can do to help,to raise awareness,to help us educate ourselves,please don't hesitate to ask!
@not_yo0o0u20
4 жыл бұрын
Into the unkoooooooooooowwwwn into the unkoooooOoooowwn
@StillJustDenise
4 жыл бұрын
@@not_yo0o0u20 What an odd response,but I like odd!🤷♀️
@chronicallyalexis
4 жыл бұрын
You guys did great!! I'm a nursing student and you got all of the lingo down! Sometimes we call chromosomal issues "defects," "disorders," or "abnormalities," but you guys can call it whatever suits you and Luke
@callenharris2959
4 жыл бұрын
You will be in AMAZING hands with the Emory team! I use the neurologist, cardiologist and immunologist within that hospital. I have used various teams there with one of my kiddos. You guys are awesome!
@cassandramuller7337
4 жыл бұрын
I love how you say "our differences make us beautiful". Everytime you guys show a clip of Luke and he stretches or smiles in that "crooked" way, I just think to myself "what an adorable and happy looking baby". He's different but he is so loved and I'm sure he knows and feels that. No wonder he looks so happy: He already has everything he could ever need in his family's arms. You guys are wonderful and that you are able to take this and almost immediately think of how you can use your situation as an example to help others is inspiring and exactly why Luke will grow up alright. Love allows us to soar higher than wings ever could.
@mollylebold5018
4 жыл бұрын
Will you be doing a lot more sign language with Luke knowing he will be later with talking? I assume Chris knows some with Trent growing up deaf but I've noticed Trent doesn't seem to use it now. But I do baby sign language even though we don't "need" it and I love that she is able to tell me what she wants.
@JustThatLauren
4 жыл бұрын
I think learning and teaching some signs for luke could be super helpful
@InezJ
4 жыл бұрын
I think they used baby sign language with all or most of their kids, so I think they will definitely try it with Luke too :)
@greta5335
4 жыл бұрын
I learned to talk when i was 10, im 10 3/4 now.
@AshleyBrown-gp5vq
4 жыл бұрын
My daughter has a genetic syndrome and many of these same issues! She is now 20 months and delayed but is so happy and walking and now talking, she’s taught me so much ❤️ he is so lucky to have you and vice versa
@mrspaisley1
4 жыл бұрын
Thank you for sharing your family’s story and raising awareness for chromosomal differences. Luke is blessed to have such incredible parents that are vigilant in finding answers for him and giving him the tools he needs to live his best life! God knew Luke needed you and you needed Luke! There is so much for you to all learn as he grows
@laura11383
4 жыл бұрын
I’m glad you have some answers. We went through a bunch of genetic testing with our daughter. They believe she has a genetic/chromosomal disorder that isn’t identified yet, but it is similar to autism. I remember how hard the phase of getting answers was. I love hearing your perspective. That’s what I try to do for my kiddo, and it’s such a freeing and exciting way to live. Ellie didn’t walk until after two, and it was such a huge celebration. She is starting to use her version of words now, and it brings me to tears. Keep celebrating and keep pushing those early therapies. It has made a world of difference in our daughter’s life. Praying for you all through this journey!
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