Wow I'm so glad this popped up on my recommendations... My son has Charge Syndrome as well. He's 2 years old. I'm so glad I found a family who also has a beautiful Charge syndrome child. God bless y'all & your beautiful son.
@@lenak9438 Charge Syndrome is very rare. That's why you don't hear about it much. I believe its 1 in every 10,000 births. I see a few similarities. My son had pretty much everything that comes with charge syndrome. But then again I don't know Leon's whole medical history. So they might have a lot more in common than I think. Thank you. I'm glad I found them as well. They're an awesome family. I really enjoy watching them.
First of all, I always think Leon is cute...but omg those baby pictures!!!!!!!😍 I also love, love how John obviously takes a huge interest in everything that goes on medically with Leon. I hate to generalize or stereotype because I know all men aren’t the same...but I’m so used to dads letting mom handle “business” and take lead. of course dad helps and kinda knows what’s going on, but maybe not as much as mom. I can tell John really pays attention and is very involved. Even the way he makes sure mom takes her prenatals now. He’s silly, and chill and he likes his video games...but I can tell he don’t play. I really enjoy this little family.
1. no surprise y’all had the typical “wheelchair hostage” battle that so many of us fight. just tonight, i commented on your most recent vlog expressing the joy i felt seeing him navigate + push his own chair. so, knowing this adds even more meaning to that joy. hella happy Leon’s got great advocates in his corner. 🖤✊🏾 2. YEHSSS! you have the right idea! - ignoring those who set low expectations for Leon even if they’re doctors//medical professionals. this frustrates me a ton! i get managing expectations + wanting to be realistic but geez. it’s limiting + detrimental to children whose parents do listen to MedPros + end up raising their child w| low expectations (i witnessed it firsthand w| my godson), b|c the children then aren’t appropriately pushed//encouraged, which can limit progress. for reference: expectations for me were so low, my MOMMs was encouraged to terminate her pregnancy + this was back in the late 80s! like Leon’s doctors, mine said i wouldn’t be capable of a fraction of the things i’ve accomplished-from a full childhood of sports to finishing high school to moving 3k miles away for my dream school + graduating university. my accomplishments make me an outlier among my CID community but not b|c most of us are not capable! we are! which is why i always tell my fellow warriors that i’m not supernatural; the difference was//is my MOMMs. she ignored doctors, pushed, challenged, + encouraged me to accomplish more. + i cannot stress enough how much that factored into what i’ve accomplished. research shows just how important support systems + expectations are in regards to development + growth. so the fact that medical professionals are still doing this, still using these scales + scores + charts in harmful ways - 🤯! i just don’t get it. truth is, *Leon is perfect + will accomplish far more than those doctors say he will* - like you said, he already has! + based on y’all’s parenting i’ve no doubt he will continue to soar. won’t be a straight line - progress for us isn’t linear - so yea, of course there will be ups, downs, progression, + perhaps even regression; however, *w| y’all in his corner he’ll continue to do amazing things, none of which will determine his worth cause he’s already perfect + worthy.* ♥️ i say all of this as a Disabled Chronic Illness warrior, an educator who works w| kids, + as a professional advocate w| more than 25 yrs of experience who’s witnessed what faith + hard work can do! *go Leon!! great job, Jody + John. keep up the amazing work. Leon chose the perfect parents for himself. ☺️*
p.s. apologies for such a lengthy comment 🤦🏾♂️ as well as the dissertations i’ve left on other videos. 😬 i blame it on being a Scorpio👉🏾 i’m passionate! LOL especially about CI+D advocacy, children, + representation in media, so, your channel is a trifecta. 🤷🏽♂️ 😂🤪 plus, i like to support good content by engaging via comments//likes + letting the ads run. mostly though, i just wanted to encourage y’all + (if it means anything 💁🏾♀️) offer a co-sign that y’all are doing the right thing by letting Leon show you where the expectations bar should be set for him, raising him as the perfectly unique individual he is instead of as a set of results of a standardized test//chart or statistic for his diagnosis. *keep up the phenomenal work, Jody + John. 👏🏽👏🏽👏🏾👏🏿👏🏾👏🏽👏🏼👏🏻 best wishes, love, + power to the whole JJ Time fam, including young Theo!* ☺️ 🖤✊🏾
On the feeding himself I totally agree my toddler was severely delayed and now she's walking and can count to 20 and knows her abc's. I have faith in little Leon!!! Also my daughter is autistic and she's also not potty trained yet
I saw Leon walking on his knees so I think there is hope he will walk some day. But his smile brightens my life. As for the hearing aids... a headband of duct tape would be better than staples John! Lol
Ok. I don’t know your beliefs but this is my view. God gave you this beautiful child because you are great parents that love him and don’t see a “condition”. One of the things I hate most in life (and I don’t like to use that word) is children, especially special needs children being abused and not receiving love. You guys are the best. Just keep doing what your doing. There is a special place in heaven for you.
My daughter was in John Hopkins hospital at birth for awhile and they had this beautiful wall hanging about we parents of special needs children and basically said what u just commented.
This is exactly why SSD exists. I'm glad he is getting the medical care & assistance he (and you) need to take care of him. I don't think Leon could be in any better hands than the two of you.
I love that you have high hopes for Leon! I have worked with other special needs people where the parents believed the doctor's expectations of them and it was so sad. So so sad. You could tell they were so frustrated with the fact that all they were given to do was lay on the mat and watch TV. When I was working with them I would bring toys and books and their eyes would just light up! Keep pushing him and don't give up hope!
OMG he was soooo cute! How could anyone not look at that cute little bundle and just fall in love? I am happy things are worked out so well! I see he looks to be living his best life now days.
Not prevented, It was planned, not expected but totally accepted! It's not weird you didn't feel sad, you had a precious baby boy that you love and care about & that is what mattered!!!
OMG the pictures of Leon as a baby are SOOO CUTE!!!! My husband's whole family is boys too and he had 2 boys before he met me so I never thought we'd have a girl but then we had a boy, a set of boy/girl twins, and another girl. We were SO surprised! I think doctors say those things so you don't get your hopes up and so they won't get in trouble but I believe in Leon! 1 in 3 million holy cow that is slim chances. I wonder if Leon can maybe hear a bit better than doctors think and maybe it makes things too loud so he doesn't like it? Definitely not sure on that just a thought..
I'm glad you liked the pictures I figured they would help better tell the story and answer questions. See we are also thinking Leon can hear somewhat and they interfere with one another but we just don't know for sure. You give me hope to have a girl one day, thank you!
I am legally blind and went to a private school. It was terrible. If you are thinking about a school that is equipped to take care of his needs. My parents were told I could never go to a regular school but my mom had other plans. Sadly I was the only child who couldn’t see well. Good idea to not listen to the negative input from the doctors because everyone is so different. I wish you luck and conquering all of your little boy’s milestones.❤️
Thank you so much for this video. It was very educational. Your little boy is so adorable. I think his eyes tell you a lot. You have a wonderful family. What great support you give each other. You know your baby better than anyone else. I am glad you didn't listen to the doctors when it came to what they thought Leon's limitations would be. You know what's best for Leon. You are wonderful parents.
You guys are so awesome ,and let me tell you you guys are so right about drs not always knowing everything your son will be able to do so much more than they or even you thought was capable. I say this bc we are in the same place my son is 8 and had mild high functioning autism i know my boy is going to thrive.
You guy's are a perfect family God gave your beautiful little guy a great mother and father. I just started watching your videos and have been binge watching them i love them all.
I love u guys even more after watching this. I'm crying because you are just awesome parents and beautiful people and its rare in America anymore but they are tears of pride (because you are West Virginians) anx tears of happiness that God gave you this beautiful boy and you are perfect and it proves God makes no mistakes
Y'all are amazing parents to Leon I love how you and John get along so well!!!! Keep doing great things for Leon. He brightens up my day for sure!!!! I wish I could wake up as happy as Leon in the morning lol❤️❤️❤️😂 Edit: 😂😂😂 when John said I wanted to use a stapler to keep Leon's hearing aid on
Hello sweet peas! I was watching this video feeling like I was from the future, lol... As u know I'm a nurse with complete senior care.. I wanted to say Ur doing Amazing as parents and Leon has Wonderful loving family to have his back... all 3 of ur babies are growing Amazing.. My grandson has Autism, I just adore the world though his eyes.. sending Love and U BOTH ARE TRULY AMAZING... ❤❤❤❤❤
You should speak with speech to work on getting him a speech device and to help w signing (takes perseverance). Pcos is awful. They put me on metformin and it really helps. You should see an OB and talk about wanting more kids they'll help you. How old is Leon? Your titles say toddler but hes got to be older by now
Leon does have speech therapy and for some reason they don't want to introduce anything new until he is older idk why. We do signs with him through out the day the problem is I am not fluent in ASL so I am learning also but if we do certain signs Leon will repeat them so he is learning YAY!! I did take medicine for a while for my fertility but since we moved I don't have a new doctor yet. Leon is currently four years old.
My brother has problems as well and they told my mom he would never do anything he talks,walks,and has fun everyday and he is now 40 yay Gods work is amazing
Never you mind what the dumb old doctors say,Leon is obviously thriving and he is a very happy child because of his wonderful parents!And thank the Lord for good people willing to lend a hand!
this is the second time this week I have heard/learned if CHARGE condition it would be hard. I do understand some of the things you going through. I have health conditions hospitals visits and doctors, and other things. I am in a wheelchair, see so many specialists. in Australia, a thing called the National Disability insurance Scheme you add up you spend a year hand it in and the can approve the amount or give what they think good amount.
Your son is a handsome little man! GOD makes everyone different. It really makes me mad when Dr,s think that they are GOD! They are helpful with there knowledge as far as medical information. It really makes me angry when they tell Parents what, and how much their child is capable of. Your son is a Blessing. Just because he has a condition at birth, that will give him challenges in life. But there is know Dr. Or anyone else that can tell Parents certain things that there child will never due. Because of his handicaps and extra hurdles he was going to go through? You both seem like amazing, loving Parents that want the best for your Son. The more time, love and work you do with him, is going to help him work on his skills. I TRULY believe and see how you talk and basically treat him like any other child. I see great things for your handsome little guy. And the hard work and love the two of you give him on a daily basis. Is only going to make him serpace so much more than any Dr. Who sees him for a few minutes each time he is seen by them. But you to as his Parents are enriching his life by treating him as normal as possible. That is so important. Keep up the amazing work you do for your handsome little guy. Because he's taking it all in. Just because he isn't communicating. Trust me his brain is socking it all in. It's definitely going to help him as he gets older. I love that you guys talk to him all the time, it's so important. Also, you were talking about things that disabled people can get, but know one gives out the information on the regular. I'm disabled, I had a stroke and also have C.O.P.D. I'm on oxygen 24/7. I would not have known about I.N.H.H.C. In home health care. There are many things I can't do due to my breathing. It's through the state around were you get county help with medical. It's medical. Your son is eligible to have Someone help him with needs that he can't do for himself. You or your husband could be his caregiver as well as have someone else come to take care of his needs a couple hours a couple times a week. So you have you time. By getting a little extra time to yourself to take care of your needs, help's you feel better about yourself and and realise any stress you have. Not only are you getting some me time.when you come home all your pressure of being a every day mom with a child who needs extra time. For example my Daughter comes and does sertraline thing's that I have a hard time doing. Then I have a lave that lives closer to me as well. TO Start a worker comes out and find out what things I need help with. They also get paper work from your Dr. They decide how many hours a month you need. I get like 98 hours each month. They pay the NA. Or Family member 12.50 a hour. Maybe it's something that you might be interested in. Your son is intitultled to these services. Hope this might help. Keep up the amazing work you and your husband are doing with your cutie patootie,
Thank you soooooooo very much, you are very sweet. We actually already know that Leon is eligible for in home nursing but we refused it because we just don't feel like we need the help. When Leon was a baby he had a feeding pump he was hooked up to for the greater portion of the day and all night long, he also had a trach and he was hooked up to a humidifier constantly and that is when they offered the nursing services but seeing as how I'm a stay at home mom with only one child I just didn't think it was necessary. Now that he is older and has since had some of those removed and he can somewhat do things on his own it is much much easier and I definitely don't see the need for nursing now. It is a great resource for families but we just didn't need to use it.
You're a beautiful family. Try the "Chinese Gender Chart" when trying to conceive a girl, its just for fun but I swear by it, I have 2 boys and 1 girl.
Thank you! I have heard of that chart before and it's actually kind of accurate based off of friends and family, and I think it's fun to look at. John would love to have a girl but we have been trying for over a year now and at this point we just want a baby or two lol, we don't really care about gender.
I took medicine for a while but for now we are just not stressing about it and whatever happens happens. I might go back to fertility treatments again one day but not right now.
I know doctors are very intelligent and know the statics. Parents know more in the long run for their children. I was 2 months early 3 pounds 2 oz, in 1974. Preemies are fighters, and stronger them people may see.
I liked the name Levi and John said what about Leon (which I honestly think he heard it on a video game lol) and I liked it. As far as him middle name Paul that is my dads name. My dad LOVES that Leon is named Leon Paul he tells everyone yep the Paul is from me!!
I have CP and my parents were told that I should be put me in a nursing home. My mother told them that what my son's do my daughter will do. I have four children. I am 69 . I was married for 39 years. Keep up what you are doing.
Been watching for awhile (I used to use my name, Barbi, but got locked out of my Google accounts so I had to create new) but never saw this. Very interesting. But did they add cerebral palsy (when u went to new Dr's in Florida) or change his diagnosis altogether? Not that it matters, just curious.
It sounds like you guys have had some icky experiences with your doctor(s). I'm so sorry, they should be helpful and informative and some definitely aren't! But you're right about one thing, you always have to be your child's advocate!
He still has glasses and wears them for things like reading, but he wore them more often as a baby because they were trying to correct his lazy eye that he ended up getting surgery for
Wow I'm so glad this popped up on my recommendations... My son has Charge Syndrome as well. He's 2 years old.
I'm so glad I found a family who also has a beautiful Charge syndrome child. God bless y'all & your beautiful son.
Valerie Ornelas is charge syndrome common or rare? Do you see similarities in your son and their son? Glad you found a family online you can relate to
@@lenak9438 Charge Syndrome is very rare. That's why you don't hear about it much. I believe its 1 in every 10,000 births.
I see a few similarities. My son had pretty much everything that comes with charge syndrome. But then again I don't know Leon's whole medical history. So they might have a lot more in common than I think.
Thank you. I'm glad I found them as well. They're an awesome family. I really enjoy watching them.
What is Leon,s favorite food
Hi
Baby Leon looks so much like Theo! I watched your videos back when this was posted, but still didn’t realise how similar they looked for some reason!
Leon is just perfect in every way ❤️❤️
Your positivity is refreshing! Leon is in the best care ❤
Whatever Leon achieves is proving he can learn. It may not be at the same rate as average children but he can still learn. Love you all. X
Boy was Leon given to the right parents.
Hi Leon. This is Angie
First of all, I always think Leon is cute...but omg those baby pictures!!!!!!!😍 I also love, love how John obviously takes a huge interest in everything that goes on medically with Leon. I hate to generalize or stereotype because I know all men aren’t the same...but I’m so used to dads letting mom handle “business” and take lead. of course dad helps and kinda knows what’s going on, but maybe not as much as mom. I can tell John really pays attention and is very involved. Even the way he makes sure mom takes her prenatals now. He’s silly, and chill and he likes his video games...but I can tell he don’t play. I really enjoy this little family.
John is an amazing husband and father
1. no surprise y’all had the typical “wheelchair hostage” battle that so many of us fight. just tonight, i commented on your most recent vlog expressing the joy i felt seeing him navigate + push his own chair. so, knowing this adds even more meaning to that joy. hella happy Leon’s got great advocates in his corner. 🖤✊🏾
2. YEHSSS! you have the right idea! - ignoring those who set low expectations for Leon even if they’re doctors//medical professionals. this frustrates me a ton! i get managing expectations + wanting to be realistic but geez.
it’s limiting + detrimental to children whose parents do listen to MedPros + end up raising their child w| low expectations (i witnessed it firsthand w| my godson), b|c the children then aren’t appropriately pushed//encouraged, which can limit progress.
for reference: expectations for me were so low, my MOMMs was encouraged to terminate her pregnancy + this was back in the late 80s! like Leon’s doctors, mine said i wouldn’t be capable of a fraction of the things i’ve accomplished-from a full childhood of sports to finishing high school to moving 3k miles away for my dream school + graduating university.
my accomplishments make me an outlier among my CID community but not b|c most of us are not capable! we are! which is why i always tell my fellow warriors that i’m not supernatural; the difference was//is my MOMMs. she ignored doctors, pushed, challenged, + encouraged me to accomplish more. + i cannot stress enough how much that factored into what i’ve accomplished.
research shows just how important support systems + expectations are in regards to development + growth. so the fact that medical professionals are still doing this, still using these scales + scores + charts in harmful ways - 🤯! i just don’t get it.
truth is, *Leon is perfect + will accomplish far more than those doctors say he will* - like you said, he already has! + based on y’all’s parenting i’ve no doubt he will continue to soar. won’t be a straight line - progress for us isn’t linear - so yea, of course there will be ups, downs, progression, + perhaps even regression; however, *w| y’all in his corner he’ll continue to do amazing things, none of which will determine his worth cause he’s already perfect + worthy.* ♥️
i say all of this as a Disabled Chronic Illness warrior, an educator who works w| kids, + as a professional advocate w| more than 25 yrs of experience who’s witnessed what faith + hard work can do!
*go Leon!! great job, Jody + John. keep up the amazing work. Leon chose the perfect parents for himself. ☺️*
p.s. apologies for such a lengthy comment 🤦🏾♂️ as well as the dissertations i’ve left on other videos. 😬
i blame it on being a Scorpio👉🏾 i’m passionate! LOL especially about CI+D advocacy, children, + representation in media, so, your channel is a trifecta. 🤷🏽♂️ 😂🤪 plus, i like to support good content by engaging via comments//likes + letting the ads run.
mostly though, i just wanted to encourage y’all + (if it means anything 💁🏾♀️) offer a co-sign that y’all are doing the right thing by letting Leon show you where the expectations bar should be set for him, raising him as the perfectly unique individual he is instead of as a set of results of a standardized test//chart or statistic for his diagnosis.
*keep up the phenomenal work, Jody + John. 👏🏽👏🏽👏🏾👏🏿👏🏾👏🏽👏🏼👏🏻 best wishes, love, + power to the whole JJ Time fam, including young Theo!* ☺️ 🖤✊🏾
You are great parents! Thank you so much for sharing your journey. Best of everything to the both of you. Leon is precious!
Thank you ❤
Leon is so lucky to have such wonderful parents and grandparents. Love conquers all!
Thank you ❤
What a strong little guy. He went through alot as an infant. Now he's a big, healthy boy!
On the feeding himself I totally agree my toddler was severely delayed and now she's walking and can count to 20 and knows her abc's. I have faith in little Leon!!! Also my daughter is autistic and she's also not potty trained yet
I saw Leon walking on his knees so I think there is hope he will walk some day. But his smile brightens my life. As for the hearing aids... a headband of duct tape would be better than staples John! Lol
John haha
Omg I love the baby picture of Leon he is such a handsome boy 💙❤️
Sometimes I am even like ohhhh he was soooo little my baby is so cute!
Ok. I don’t know your beliefs but this is my view. God gave you this beautiful child because you are great parents that love him and don’t see a “condition”. One of the things I hate most in life (and I don’t like to use that word) is children, especially special needs children being abused and not receiving love. You guys are the best. Just keep doing what your doing. There is a special place in heaven for you.
Thank you so much ❤️
My daughter was in John Hopkins hospital at birth for awhile and they had this beautiful wall hanging about we parents of special needs children and basically said what u just commented.
This is exactly why SSD exists. I'm glad he is getting the medical care & assistance he (and you) need to take care of him. I don't think Leon could be in any better hands than the two of you.
I love that you have high hopes for Leon! I have worked with other special needs people where the parents believed the doctor's expectations of them and it was so sad. So so sad. You could tell they were so frustrated with the fact that all they were given to do was lay on the mat and watch TV. When I was working with them I would bring toys and books and their eyes would just light up! Keep pushing him and don't give up hope!
OMG he was soooo cute! How could anyone not look at that cute little bundle and just fall in love? I am happy things are worked out so well! I see he looks to be living his best life now days.
Not prevented, It was planned, not expected but totally accepted! It's not weird you didn't feel sad, you had a precious baby boy that you love and care about & that is what mattered!!!
Beautifully said
I pray the rest of my life is as blessed as is yours . Yall are such a beautiful family.
You are doing a great job and I also have faith for Leon in the future
I’m really happy for you guys. Your son is blessed to have you guys 🙏🏼😇
Thank you!
Leon was omg so cute as a newborn!
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You're just lovely people. Bless Leon he is beautiful ❤️ Proud of you both how you get on with things. Warm blessings from England 🇬🇧 xxx
Thank you!
OMG the pictures of Leon as a baby are SOOO CUTE!!!! My husband's whole family is boys too and he had 2 boys before he met me so I never thought we'd have a girl but then we had a boy, a set of boy/girl twins, and another girl. We were SO surprised! I think doctors say those things so you don't get your hopes up and so they won't get in trouble but I believe in Leon! 1 in 3 million holy cow that is slim chances. I wonder if Leon can maybe hear a bit better than doctors think and maybe it makes things too loud so he doesn't like it? Definitely not sure on that just a thought..
I'm glad you liked the pictures I figured they would help better tell the story and answer questions. See we are also thinking Leon can hear somewhat and they interfere with one another but we just don't know for sure. You give me hope to have a girl one day, thank you!
Great video! Glad that I found your channel. Y'all are such a loving family with an adorable & smart child, God bless you all!!
Thank you so much!
What an amazing family! You guys are doing great!
Thank you
I lu that quick wedding video. It brought tears to my eyes.
My little guy has 22q which has a lot of the same “issues” has CHARGE. Wishing you guys all the best 😍
He has CHARGE? Thanks for the education! My husband has BPES. He's the best man I could have ever met, and has the sweetest heart.
I think you are wonderful parents, and you keep doing what's right for Leon and yourselves.
Thank you!
Very lovingingly informative. Thank you!
I am legally blind and went to a private school. It was terrible. If you are thinking about a school that is equipped to take care of his needs.
My parents were told I could never go to a regular school but my mom had other plans. Sadly I was the only child who couldn’t see well.
Good idea to not listen to the negative input from the doctors because everyone is so different.
I wish you luck and conquering all of your little boy’s milestones.❤️
Thank you so much for this video. It was very educational. Your little boy is so adorable. I think his eyes tell you a lot. You have a wonderful family. What great support you give each other. You know your baby better than anyone else. I am glad you didn't listen to the doctors when it came to what they thought Leon's limitations would be. You know what's best for Leon. You are wonderful parents.
Thank you so much ❤
You guys are so awesome ,and let me tell you you guys are so right about drs not always knowing everything your son will be able to do so much more than they or even you thought was capable. I say this bc we are in the same place my son is 8 and had mild high functioning autism i know my boy is going to thrive.
Just came across your channel today!! Leon is so cute and you are both the sweetest parents. I subscribed 😁♥️
Thank you so much!!
You two are so beautiful and pleasant you given off positive vibes leon is so blessed to have you as parents
Thank you!
Love u guys for the positive attitude I think the same way and I have many disabilities
You guy's are a perfect family God gave your beautiful little guy a great mother and father. I just started watching your videos and have been binge watching them i love them all.
Thank you!
@@jjtime you are so very welcome 🥰
Thanks for answering questions about my new little buddy!
I love u guys even more after watching this. I'm crying because you are just awesome parents and beautiful people and its rare in America anymore but they are tears of pride (because you are West Virginians) anx tears of happiness that God gave you this beautiful boy and you are perfect and it proves God makes no mistakes
Wow you guys are amazing parents, love your positive vibes. Your little boy is adorable 💗
Thank you!
Y'all are amazing parents to Leon I love how you and John get along so well!!!! Keep doing great things for Leon. He brightens up my day for sure!!!! I wish I could wake up as happy as Leon in the morning lol❤️❤️❤️😂
Edit: 😂😂😂 when John said I wanted to use a stapler to keep Leon's hearing aid on
Thank you so much, and John is crazy 😂
Lol.....your husband wanted to staple the hearing aid 😂😂😂 I just love you guys!❤️
Such a beautiful family! Y’all seem like a such a cute couple too
Thank you ❤
Hello sweet peas! I was watching this video feeling like I was from the future, lol... As u know I'm a nurse with complete senior care.. I wanted to say Ur doing Amazing as parents and Leon has Wonderful loving family to have his back... all 3 of ur babies are growing Amazing.. My grandson has Autism, I just adore the world though his eyes.. sending Love and U BOTH ARE TRULY AMAZING... ❤❤❤❤❤
You should speak with speech to work on getting him a speech device and to help w signing (takes perseverance). Pcos is awful. They put me on metformin and it really helps. You should see an OB and talk about wanting more kids they'll help you. How old is Leon? Your titles say toddler but hes got to be older by now
Leon does have speech therapy and for some reason they don't want to introduce anything new until he is older idk why. We do signs with him through out the day the problem is I am not fluent in ASL so I am learning also but if we do certain signs Leon will repeat them so he is learning YAY!! I did take medicine for a while for my fertility but since we moved I don't have a new doctor yet. Leon is currently four years old.
Good one John,about stapling his hearing aid on to funny
My brother has problems as well and they told my mom he would never do anything he talks,walks,and has fun everyday and he is now 40 yay Gods work is amazing
Never you mind what the dumb old doctors say,Leon is obviously thriving and he is a very happy child because of his wonderful parents!And thank the Lord for good people willing to lend a hand!
I think Leon is brilliant
Such a dad thing to say when y'all were talking about his speech and feeding therapy. "It's the same person".
"They charge him for both" 🤭😂😂
this is the second time this week I have heard/learned if CHARGE condition it would be hard. I do understand some of the things you going through. I have health conditions hospitals visits and doctors, and other things. I am in a wheelchair, see so many specialists. in Australia, a thing called the National Disability insurance Scheme you add up you spend a year hand it in and the can approve the amount or give what they think good amount.
I love your son he's so cute 😭😭😘🤗🤗
What a sweet family. 💖
Thank you!
Will you go back and re answer these questions to see how far you guys have came along and to update all of your guys subscribers 🙂
I would love to see pics when he was little or when he was born
Your son is a handsome little man! GOD makes everyone different. It really makes me mad when Dr,s think that they are GOD! They are helpful with there knowledge as far as medical information. It really makes me angry when they tell Parents what, and how much their child is capable of. Your son is a Blessing. Just because he has a condition at birth, that will give him challenges in life. But there is know Dr. Or anyone else that can tell Parents certain things that there child will never due. Because of his handicaps and extra hurdles he was going to go through? You both seem like amazing, loving Parents that want the best for your Son. The more time, love and work you do with him, is going to help him work on his skills. I TRULY believe and see how you talk and basically treat him like any other child. I see great things for your handsome little guy. And the hard work and love the two of you give him on a daily basis. Is only going to make him serpace so much more than any Dr. Who sees him for a few minutes each time he is seen by them. But you to as his Parents are enriching his life by treating him as normal as possible. That is so important. Keep up the amazing work you do for your handsome little guy. Because he's taking it all in. Just because he isn't communicating. Trust me his brain is socking it all in. It's definitely going to help him as he gets older. I love that you guys talk to him all the time, it's so important. Also, you were talking about things that disabled people can get, but know one gives out the information on the regular. I'm disabled, I had a stroke and also have C.O.P.D. I'm on oxygen 24/7. I would not have known about I.N.H.H.C. In home health care. There are many things I can't do due to my breathing. It's through the state around were you get county help with medical. It's medical. Your son is eligible to have Someone help him with needs that he can't do for himself. You or your husband could be his caregiver as well as have someone else come to take care of his needs a couple hours a couple times a week. So you have you time. By getting a little extra time to yourself to take care of your needs, help's you feel better about yourself and and realise any stress you have. Not only are you getting some me time.when you come home all your pressure of being a every day mom with a child who needs extra time. For example my Daughter comes and does sertraline thing's that I have a hard time doing. Then I have a lave that lives closer to me as well. TO Start a worker comes out and find out what things I need help with. They also get paper work from your Dr. They decide how many hours a month you need. I get like 98 hours each month. They pay the NA. Or Family member 12.50 a hour. Maybe it's something that you might be interested in. Your son is intitultled to these services. Hope this might help. Keep up the amazing work you and your husband are doing with your cutie patootie,
Thank you soooooooo very much, you are very sweet. We actually already know that Leon is eligible for in home nursing but we refused it because we just don't feel like we need the help. When Leon was a baby he had a feeding pump he was hooked up to for the greater portion of the day and all night long, he also had a trach and he was hooked up to a humidifier constantly and that is when they offered the nursing services but seeing as how I'm a stay at home mom with only one child I just didn't think it was necessary. Now that he is older and has since had some of those removed and he can somewhat do things on his own it is much much easier and I definitely don't see the need for nursing now. It is a great resource for families but we just didn't need to use it.
Have you tried wig tape on Leon's hearing aids?
hummm nope never even really heard of it before but I will look into it thank you.
A headband works for some kiddies.
You're a beautiful family. Try the "Chinese Gender Chart" when trying to conceive a girl, its just for fun but I swear by it, I have 2 boys and 1 girl.
Thank you! I have heard of that chart before and it's actually kind of accurate based off of friends and family, and I think it's fun to look at. John would love to have a girl but we have been trying for over a year now and at this point we just want a baby or two lol, we don't really care about gender.
@@jjtime Well, wishing you a bundle of joy. Girl or Boy :-)
Thank you so much!
Leon is beyond intelligent. Thank the Lord you do not listen to the doctors. You are wonderful loving parents.
I have PCOS to it’s really bad I had to take meds to get pregnant clomed it’s called . I tried for a long time on my own but nothing.
I took medicine for a while but for now we are just not stressing about it and whatever happens happens. I might go back to fertility treatments again one day but not right now.
I know doctors are very intelligent and know the statics. Parents know more in the long run for their children. I was 2 months early 3 pounds 2 oz, in 1974. Preemies are fighters, and stronger them people may see.
💕CRIKEY YOUR DOCTORS ARE BACKWARDS AT COMING FORWARD with the WHERE & HOW TO DO THINGS💕
I had A nephew that he weighed 2 and a 1/2. And I don't know what the length was that. He served 6 months in the new tornado unit before coming home.
Will Leon's one ear be corrected surgically for cosmetic reasons later?
Would you get leon a Communication device???
Yes we have looked into them, we actually have an app on his tablet but it's hard for him to use.
I had ‘morning, noon and night sickness’ too. I lost weight each time, with my youngest I lost over 10 kilos.
You are amazing parents, Leon is going to walk and talk one day. He is a sweet heart..
Omg Leon as a baby 😍😍😍
I love your family I love being apart of it
Lean is a handsome boy. I love to watch all he can do
Beautiful little soul 😍
you look so beautiful with a touch of eye make-up. Keep it up
Thank you ❤
Can Leon hear with the hearing aid
I had a trach like Leon I got it removed and feeding tube got removed I think what ever Leon what's to do he can do it
When does your Florida family get to see y’all???? We love you soooo much!!!
Can you do another video about Leon’s story
Where did Leon get his name?
I liked the name Levi and John said what about Leon (which I honestly think he heard it on a video game lol) and I liked it. As far as him middle name Paul that is my dads name. My dad LOVES that Leon is named Leon Paul he tells everyone yep the Paul is from me!!
Your son is so handsome!
I love your channel
Thank you ❤
U have the usb built In it do use that at ur advantage put the tv on that and practice it that way
Love the little baby boy Leon I know he is not a baby but he is turning into a big boy.😊❤
Leon is a perfect and handsome young man 😢❤
I have CP and my parents were told that I should be put me in a nursing home. My mother told them that what my son's do my daughter will do. I have four children. I am 69 . I was married for 39 years. Keep up what you are doing.
Your kids are so beauitful
Will Leon learn how to drive when he is sixteen
We aren't sure what the future holds for Leon, but we will always strive for everything
@@jjtime I want to meet all of you You John and Leon PS Julie I wish we could be neighbors that would be awesome love you guys ps Julie
theres Florida School for The deaf and Blind if you are wondering
I hope someday you will have a girl that would be awesome u two are very good parents
Been watching for awhile (I used to use my name, Barbi, but got locked out of my Google accounts so I had to create new) but never saw this. Very interesting. But did they add cerebral palsy (when u went to new Dr's in Florida) or change his diagnosis altogether? Not that it matters, just curious.
When did Leon start playing with car,s
When he was about 1 year old
It sounds like you guys have had some icky experiences with your doctor(s). I'm so sorry, they should be helpful and informative and some definitely aren't! But you're right about one thing, you always have to be your child's advocate!
We have definitely had wonderful doctors that are now like family but yes unfortunately you get those icky ones lol
What did the R in Charge syndrome used to stand for even tho that term is no longer uses
It stands for restricted growth and development
Okay thank you
Aww look at you talking about his g- tube and how you thought he was only going to need it just for liquids (: mother’s know best
I’m curious if his speech therapist is trying any voice output communication?
They are doing pecs and trying to introduce a talking app at the moment
That what people say about my son don’t listen because god has a plan for Leon in he will do all those things
Wow I watched this 4 years later and he is walking! See doctors don’t know everything
ik i am really late but one quiestion i have what happen to leons glasses?
He still has glasses and wears them for things like reading, but he wore them more often as a baby because they were trying to correct his lazy eye that he ended up getting surgery for
L love your chanel❤❤❤❤❤ and your family
How is Li en doing
He is doing great 😁