People sure are judgy, sheesh. I think it’s great you’re supportive of his independence, I could see how it would be tempting to want him to live in a bubble. Thanks for the update
It’s wonderful that you and Lonnie are open to sharing his story with GPA. By doing so, you’re not only raising awareness but also providing hope and valuable insights to those navigating this condition, whether they are directly affected or supporting a loved one. Stories like Lonnie’s can inspire others, foster understanding, and even build a sense of community for people who might otherwise feel alone in their journey. Thank you for turning your experience into a source of support for others.
It's good that you recognize that Lonnie Jr. is an adult and that you treat him that way. I'm sure that it is hard for you, but allowing him to make his own way is good for him in the long run.
I don't know if the surgery he is getting is the septoplasty but I had a septoplasty with a turbinate reduction. It was one of the best decisions I have ever made. I have not had any sinus issues since getting it in April 2024. I can breathe so much more clear. The recovery from it for me was 4 ish days and the worst part was just waiting for the splints (stents?) to come out which was just two manageable days. I hope that whatever surgery it is can be beneficial :) Wishing you all the best
Best wishes. Today Dec 11th marks 7 years since My daughters liver transplant. My amazing sister donated. To go from being told she wouldn't see her 1st birthday to having hopes and dreams for her future is truly amazing ❤️ Hope the surgery works out for your son and things can start to head back into a somewhat new normal life
I was also very Sick as a Teen (a year in hospital) and moved out right at 18 across the country and at 19 out of the country! Sometimes you just need to feel that freedom and experience life after such a crazy time of sickness. I did end up moving back closer to my parents a few years later to spend more time with them again and I love that I got the opportunity to figure myself out as a young adult 😊 wishing Lonnie all the best for his future.
Its good that he tries to not let it hinder him. I don’t think I could cope when my kids want to move out. Keeping them locked away is illegal lol. My oldest will be 21 in feb and that’s scary. X
I had sinus surgery in 2021. It helped me breathe better but, I still get sick a lot. I don’t get constant sinus infections anymore! I hope surgery helps him.
Thanks so much!! I’ve been following I think since I was 19! I’m Makayla on my mom’s channel. It’s worth the risk to do sinus surgery. Everyone in my family but, my mom needed it.
@stepanie, I also have GPA/wegeners vasculitis as well.. I have struggled with this sense 2018 at Cleveland clinic... unfortunately, I am not un remossion... it's so hard plus I got 4 other autoimmune disorders overlapping amd mitochondrial disease.. I have P-ANCA with serious
With the SSI, I unfortunately had to apply for it when I was around his age too, I didn't want to but the great benefit for SSI is that if you already have a primary insurance, you get straight Medicaid as a secondary which means anything that your primary insurance does not cover in terms of doctor appointments or medicine copays, you can run through straight Medicaid and it'll cover it. I actually didn't know I even had this for.....2 years after I got approved for SSI. When I applied, I was basically dying and I fully expected it to be a battle to be approved bc that's what everyone says happens. From the date of applying to the date I got accepted, it was just at the 2 month mark(and only a month after I got the letter saying they'd gotten my application). I randomly got a check in the mail for like $1200 and some change, bc back then SSI was like max $624 a month, and I didn't know what the hell the check WAS because it came a week before my approval letter and nobody was expecting me to be approved that fast based on what I've heard about how applying goes. So I was like....wtf is this check 😂 but when my approval came, it didn't include the information or card for Medicaid. I didn't know I had it until I got a random replacement card in the mail, and at that point bc of my health and my insurance insane deductible, I was 20 and in catastrophic medical debt. I was able to run some of backbilled through Medicaid but some of it, it had been over the time limit and I was just S.O.L So just wanted to inform you in case this happens to him. Also, working while on SSI is tricky, as is having a bank account. On SSI, you cannot have more than $2,000 in the bank at one time or they can terminate or lower your benefits. Working while on SSI also significantly lowers your benefits but you still keep the straight Medicaid as a secondary if he has insurance, even if they drop his financial benefits to zero because he's making x amount of money. I believe as of January 2025 the max SSI monthly pay will be $967 or something.
Sounds all good and perfect but in our area no Drs will accept Medicaid and in this economy how does anyone live off $600 a month? You can barely pay your utilities with $600 a month. Maybe your area is cheaper, but here in Florida a studio apartment is like $1500 a month.
@GroundhogBaby it's $967/month but still, nobody can live off of that. If you go to doctors in private practice not affiliated with a hospital, they may not take it but any doctor who is affiliated with a hospital, which id imagine as a lung transplant patient, all of his are, do take it because hospitals take it. I mentioned this because in the video she said his health is at a point where he currently cannot work and is going to be applying for SSI so in this situation, $967/month is better than $0/month
I love that you are uploading again. Also think it’s awesome he’s on his own. Whatever makes him happy he should do! Your thinking would be mine exactly!
I know you didn’t ask, and this might not be his thing but maybe a job where he sells things from home so that he can control his environment and can sleep as much as he needs to and kind of work on his schedule. Might be good for him. I hope he can get his SSI sooner than later and I wish him all the luck.
I don't know how Colorado is or if different states pay different amounts for SSI, but people in Florida get like $700 a month and you know how expensive it is to live here. I hope Lonnie gets better so that he is able to do some kind of job because it's no fun living on that amount of money each month. Everything goes to utilities and that barely covers it. I don't know how people are able to do it. The economy is horrible right now and on January 20th, things are going to start getting worse. I have my fingers crossed 🤞🏼 that Lonnie will regain his health and feel better.
One benefit to Lonnie getting on SSI before the age of 21 is that when either you or his dad retires, he will be able to get the same amount either you or his dad would've gotten from disability and it doesn't take away from what the parent gets in social security payment. The reasoning is that the parents have paid into their disability through working all these years so once the parent is retired, their adult disabled child is eligible to get that as long as they are deemed disabled before the age of 21. I just wanted to mention that because I feel like when you have a disabled kid, it's scary to wonder how they will make it when you get older or when you aren't here and SSI alone just isn't enough to live on, but typically disability payments are larger, depending on the parents work history and income of course ....but I feel like it does offer a sense of security, that if Lonnie ends up having to be on SSI for many years, or if he gets off it and then at some point something happens and he gets back on, because he was determined disabled before 21, once you or dad retire, he at least has that coming in to help❤
I just noticed this comment. I'm autistic and on social security. I'm getting money from my mother who passed away 9 years ago but my father is retired and gets social security himself along with VA because he's a veteran. Will I be able to get more money when it comes to my father being retired?
@@Juwlz I was determined disabled at the age of 17. Do you know how I would go about doing that? Do I need to contact my father or is this a process I should do myself?
I am autistic and found out yesterday through the SPARK research study that I have 7q11.23 duplication syndrome which is an actual diagnosis for insurance amd therapy though my family did the saliva sample in 2021 and k guess they had the results in 2021 but didn’t have the request until yesterday but has your family ever done spark considering you guys have 4 autistic children and your autistic too Stephanie though since you guys already know of your chromosome duplication I do t know if they would tell you anything you guys dint already know though it is nice to get your names in the spark research study and you get gift cards
@@emilyking4580 no it's for anyone if they're unable to work. I don't have intellectual disabilities but I am in a wheelchair full time, have bad chronic pain and I have social security disability
“What’s his plan now that he’s graduated?” Live!!!!!! It’s a full time job for him.
People sure are judgy, sheesh. I think it’s great you’re supportive of his independence, I could see how it would be tempting to want him to live in a bubble. Thanks for the update
I know and it's not like living in his mother's basement is going to prevent him from developing medical complications.
It’s wonderful that you and Lonnie are open to sharing his story with GPA. By doing so, you’re not only raising awareness but also providing hope and valuable insights to those navigating this condition, whether they are directly affected or supporting a loved one. Stories like Lonnie’s can inspire others, foster understanding, and even build a sense of community for people who might otherwise feel alone in their journey. Thank you for turning your experience into a source of support for others.
Lonnie Jr is a very smart young man he will do good in life. I hope this surgery helps him feel more healthy ❤🎉
I'm glad Lonnie is doing well I am praying this surgery goes well for him and he recovers quickly
That is awesome Lonnie Jr wanted to make we were updated on everything! Glad to hear he is doing well!
It's good that you recognize that Lonnie Jr. is an adult and that you treat him that way. I'm sure that it is hard for you, but allowing him to make his own way is good for him in the long run.
100% I realize my issue of him moving up and out is my own emotions to sort out and LJ isn’t responsible for them
You are a good mama❤
I don't know if the surgery he is getting is the septoplasty but I had a septoplasty with a turbinate reduction. It was one of the best decisions I have ever made. I have not had any sinus issues since getting it in April 2024. I can breathe so much more clear. The recovery from it for me was 4 ish days and the worst part was just waiting for the splints (stents?) to come out which was just two manageable days. I hope that whatever surgery it is can be beneficial :) Wishing you all the best
Lonnie junior just wants his independence totally understandable.
Best wishes. Today Dec 11th marks 7 years since My daughters liver transplant. My amazing sister donated. To go from being told she wouldn't see her 1st birthday to having hopes and dreams for her future is truly amazing ❤️ Hope the surgery works out for your son and things can start to head back into a somewhat new normal life
Lonnie definitely should live his life. If he is healthy enough he needs to take advantage. Have fun!
Wish Lonnie Jr and the rest of the family the best ❤❤❤ Glad everyone is doing well
I am so proud of Lonnie.
Glad Lonnie Jr is doing well. Praying the surgery goes smoothly. Understandably, he wants some independence. I'm sure he'll do fine.
Lonnie Jr is in my prayers 🙏 and have a wonderful Christmas ⛄🎁.
Rituxan is a lifesaver! My GPA has been in remission for 10 years thanks to this drug! Sending a big hug to Lonnie from Texas!
I love watching your UA-cam channel.
I was also very Sick as a Teen (a year in hospital) and moved out right at 18 across the country and at 19 out of the country! Sometimes you just need to feel that freedom and experience life after such a crazy time of sickness. I did end up moving back closer to my parents a few years later to spend more time with them again and I love that I got the opportunity to figure myself out as a young adult 😊 wishing Lonnie all the best for his future.
Praying for Lonnie jr ❤ you guys
Its good that he tries to not let it hinder him. I don’t think I could cope when my kids want to move out. Keeping them locked away is illegal lol. My oldest will be 21 in feb and that’s scary. X
I had sinus surgery in 2021. It helped me breathe better but, I still get sick a lot. I don’t get constant sinus infections anymore! I hope surgery helps him.
Awwww I love this for you!
Thanks so much!! I’ve been following I think since I was 19! I’m Makayla on my mom’s channel. It’s worth the risk to do sinus surgery. Everyone in my family but, my mom needed it.
@stepanie, I also have GPA/wegeners vasculitis as well.. I have struggled with this sense 2018 at Cleveland clinic... unfortunately, I am not un remossion... it's so hard plus I got 4 other autoimmune disorders overlapping amd mitochondrial disease..
I have P-ANCA with serious
I’m so sorry :(
I have to get that surgery on the 18th of this month I’m praying for you
With the SSI, I unfortunately had to apply for it when I was around his age too, I didn't want to but the great benefit for SSI is that if you already have a primary insurance, you get straight Medicaid as a secondary which means anything that your primary insurance does not cover in terms of doctor appointments or medicine copays, you can run through straight Medicaid and it'll cover it. I actually didn't know I even had this for.....2 years after I got approved for SSI. When I applied, I was basically dying and I fully expected it to be a battle to be approved bc that's what everyone says happens. From the date of applying to the date I got accepted, it was just at the 2 month mark(and only a month after I got the letter saying they'd gotten my application). I randomly got a check in the mail for like $1200 and some change, bc back then SSI was like max $624 a month, and I didn't know what the hell the check WAS because it came a week before my approval letter and nobody was expecting me to be approved that fast based on what I've heard about how applying goes. So I was like....wtf is this check 😂 but when my approval came, it didn't include the information or card for Medicaid. I didn't know I had it until I got a random replacement card in the mail, and at that point bc of my health and my insurance insane deductible, I was 20 and in catastrophic medical debt. I was able to run some of backbilled through Medicaid but some of it, it had been over the time limit and I was just S.O.L
So just wanted to inform you in case this happens to him.
Also, working while on SSI is tricky, as is having a bank account. On SSI, you cannot have more than $2,000 in the bank at one time or they can terminate or lower your benefits. Working while on SSI also significantly lowers your benefits but you still keep the straight Medicaid as a secondary if he has insurance, even if they drop his financial benefits to zero because he's making x amount of money. I believe as of January 2025 the max SSI monthly pay will be $967 or something.
Sounds all good and perfect but in our area no Drs will accept Medicaid and in this economy how does anyone live off $600 a month? You can barely pay your utilities with $600 a month. Maybe your area is cheaper, but here in Florida a studio apartment is like $1500 a month.
@GroundhogBaby it's $967/month but still, nobody can live off of that. If you go to doctors in private practice not affiliated with a hospital, they may not take it but any doctor who is affiliated with a hospital, which id imagine as a lung transplant patient, all of his are, do take it because hospitals take it.
I mentioned this because in the video she said his health is at a point where he currently cannot work and is going to be applying for SSI so in this situation, $967/month is better than $0/month
I love that you are uploading again. Also think it’s awesome he’s on his own. Whatever makes him happy he should do! Your thinking would be mine exactly!
I know you didn’t ask, and this might not be his thing but maybe a job where he sells things from home so that he can control his environment and can sleep as much as he needs to and kind of work on his schedule. Might be good for him. I hope he can get his SSI sooner than later and I wish him all the luck.
Next time you're in Nashville, you have to let me know 😂
oh my gosh!!! I forgot you lived there
❤
I’m having surgery on Friday can everyone please pray that everything goes well.
Good luck!
🙏🏼🫂
❤❤❤❤❤❤
Everyone has to spread their wings. It makes me sad to see the GPAV causing so much trouble.
♡♡♡♡
I don't know how Colorado is or if different states pay different amounts for SSI, but people in Florida get like $700 a month and you know how expensive it is to live here. I hope Lonnie gets better so that he is able to do some kind of job because it's no fun living on that amount of money each month. Everything goes to utilities and that barely covers it. I don't know how people are able to do it. The economy is horrible right now and on January 20th, things are going to start getting worse. I have my fingers crossed 🤞🏼 that Lonnie will regain his health and feel better.
It is based off of cost of living (I think) but at this point it’s better than nothing :)
One benefit to Lonnie getting on SSI before the age of 21 is that when either you or his dad retires, he will be able to get the same amount either you or his dad would've gotten from disability and it doesn't take away from what the parent gets in social security payment. The reasoning is that the parents have paid into their disability through working all these years so once the parent is retired, their adult disabled child is eligible to get that as long as they are deemed disabled before the age of 21. I just wanted to mention that because I feel like when you have a disabled kid, it's scary to wonder how they will make it when you get older or when you aren't here and SSI alone just isn't enough to live on, but typically disability payments are larger, depending on the parents work history and income of course ....but I feel like it does offer a sense of security, that if Lonnie ends up having to be on SSI for many years, or if he gets off it and then at some point something happens and he gets back on, because he was determined disabled before 21, once you or dad retire, he at least has that coming in to help❤
I just noticed this comment. I'm autistic and on social security. I'm getting money from my mother who passed away 9 years ago but my father is retired and gets social security himself along with VA because he's a veteran. Will I be able to get more money when it comes to my father being retired?
@michelle360kpop as long as you were determined to be disabled at or before the age of 21 yes!
@@Juwlz I was determined disabled at the age of 17. Do you know how I would go about doing that? Do I need to contact my father or is this a process I should do myself?
I am autistic and found out yesterday through the SPARK research study that I have 7q11.23 duplication syndrome which is an actual diagnosis for insurance amd therapy though my family did the saliva sample in 2021 and k guess they had the results in 2021 but didn’t have the request until yesterday but has your family ever done spark considering you guys have 4 autistic children and your autistic too Stephanie though since you guys already know of your chromosome duplication I do t know if they would tell you anything you guys dint already know though it is nice to get your names in the spark research study and you get gift cards
Does Lonnie Jr have a job
I talk about this in the video
I most certainly wasn’t an adult at 19.
You were a legal adult at 18 unless you’re disabled and your parents became your guardian. Point is, he is an adult and gets to make his own choices.
@ I’m sorry. I meant that a different way.
Because he was disabled technically before he turned 18 he can draw Social Security off the parent so look into that also
If he does gets accepted to social security he cant go over 2,000 dollars.
Yep! There’s a limit ❤️
@@emilyking4580 It’s also for those who are sick and can’t work.
@@emilyking4580 no it's for anyone if they're unable to work. I don't have intellectual disabilities but I am in a wheelchair full time, have bad chronic pain and I have social security disability
How is Lonnie going to be 19 lol
u with man
Yes ❤