HOW LONG WILL HE NEED TREATMENT? | Surgery is Scheduled | Violett Vlogs
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- Опубликовано: 8 фев 2025
- This is an update on Landons Health from beginning to where we are now. This is in no way medical advice, this is just our journey and what ours looks like. CIDP stands for - Chronic inflammatory demyelinating polyradiculoneuropathy.
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I'm Jessica Violett! I'm a wife & mom of 4, living in North Pole, Alaska that loves to share my journey of the ups and downs of life!
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#Surgery #Surgery #CIDP
You’ve been the most amazing advocate and fighter for him during this journey! It’s been inspiring to watch! We still need to work on your Mickey Mouse pancake skills, but that will come with time 😂😂😂
You do exactly what you feel best for Landon, people are so opinionated. You are an absolutely amazing mother!!!
I strongly agree with you. She is doing a great job. Never apologize for doing what's best for your family. If those haters were in the same situation I doubt they would do as well.
Absolutely agree with this. And I did what was the best for my kids. After a while you develop a thick skin.
I have a port, and it was the best thing I did for myself. I’ve had mine almost two years, and I can’t imagine my life without it. I used to be bed bound and unable to attend school. Now I get treatments daily at home, which will allow me to move into college this fall, something I never thought I would get to do.
I was a chemo nurse and the ports were a godsend for our patients. They were reluctant at first but always were happy afterwards. I was hoping Landon would get one.
Sherflip I have a port & glad I did for the 4 Chemo treatments I had for Brentuximab Vedotin.
I hate it when Doctors won’t listen to moms who have the intuition for their children! Good for you fighting for your son! Much Love
A port is an absolute Godsend, he will also be able to have his blood drawn thru the port. As a retired oncology nurse I cannot imagine my patients who needed constant iv therapy being able to get by without a port. Stay strong 💪🏻 and continue to be his best advocate. God bless you all 🙏🙏💕💕🥰
Hi Jessica, you don't have to justify the decisions you make for your family. The wheelchair is there for Landon to use if/when he needs a rest. How much he uses it is up to Landon. You are doing an amazing job as a mom, you have had to deal with a lot of difficult decisions & still remained strong.
You never have to justify why you are doing something that you as a parent deem medically necessary. You are doing a wonderful job and it shows in how he has improved.
You do what you need to do for your child. No one knows Landon better than you. No one else's opinion matters. You are in our prayers.
My husband, who has cancer, has a port. The surgery wasn't very long; the observation period afterward was what took the longest. I call it "the outlet" and they just plug in the chemo. It will make plugging in the infusions so much easier for Landon. I pray for him daily.
I’m a nurse and honestly I was wondering why the port wasn’t considered in the beginning. You are a good mom and on top of this. You have to be his healthcare advocate and you are doing a wonderful job!
^ this!
Jessica, you are the best Mama Bear ever!
We fully understand about the wheelchair. We have kept TitaniumAmy's as well. A lot of people don't understand that a mobility device isn't an on/off type deal. For some people it's used in phases. For others, it's used parts of days, or depending on the activity. Mostly, it's nobody else's business. But, when you open yourself up and talk about things like this it helps reduce misconceptions. You're doing good, mama!
I had a port for my breast cancer treatment. It was in my body over a year and a half. It was so worth it. The treatment will be so much easier. Tell him it’s a mild easy surgery going in and even easier coming out. He will feel a little bruised after it goes in but that will eventually go away. No pain at all when it comes out. I’ll be thinking of him. Stay strong.
When my son was a baby he had a health scare. I went to 5 different Drs and got 5 different diagnosis. Finally I got him a appt with a specialist at children’s hospital LA. It took me 6 months to get him in but I found the best dr ever. A couple of things this dr taught me. If it wants out of the body let it out. My son had been on a anti diarrhea for 5 months. The wrong thing to do. He could have just pooped it out in a week but the meds kept it in his body for 6 months. As soon as I took him off it was gone in 2 days! Anyway the most important advice he gave me and I’ve used ever since is always listen to your gut feelings! Don’t be intimidated. Listen to your gut!!
I’m happy that he’s getting it.... 6 months is enough 😉😄. Landon will be a super hero with a lego in his chest. Look up Mary Frey she has a port, that’s so amazing they randomly had that book and helped him be ok. That’s huge to have that care.
What a blessing a mom gutt is. You are an amazing mom and I'm so glad that Landon is able to get the help he needs. Ports are available for a reason, people don't always understand what is best when they don't have to go through it themselves. Sending prayers for you all and thank you for sharing the journey with us. 🙏🏻🥰
I am in the medical field but retired. You do what is best for him. Don't listen to other people. They don't live in your situation.You have done a great job!
My mom had breast cancer and had a port. She always said it was the best decision she ever made. She encouraged anyone who had the need to get one. You can have it removed, otherwise just have to flush it out when not in use. Easy peasy.
One lil tip, if you're ever at a hospital n Landon needs his port accessed, besides the one who regularly does the infusions, be sure to ask if they have someone who has experience accessing ports. My son's oncologist told me that tip when he got his port. No other reason other than to make sure he has someone who knows what they are doing so he doesn't have to keep being stuck in the chest. Anything to make sure they experience as less pain as possible. Much love ♥️
You are a Mama Bear, and that is awesome!!! A port is a Godsend, I had one for over 3 years, it saved my veins ❤️❤️❤️ Blessings Violett Family ❤️❤️❤️
Keeping Landon, you, and the rest of your family in our prayers. You are an amazing mom!!!
Thank you for taking the time to keep us informed of Landon's journey.. You have done so great in getting him diagnosed .. My prayers are with you and your family on this Journey ❤️🙏
God has given moms a sense about their child. Trust your gut. You are a terrific mom. God bless you and your family.❤
You’re his mother you decide what’s best for him everyone else can keep their mouth closed. May God be with you through this journey.
I believe you have this Mom. You did not give up and fought hard for your son. I think you made the right choice with the port. It saves the veins. I think yalls kiddos will be truly closely bonded in the journey with Landon to recovery. Maybe someone will see this in Alaska and let y’all borrow their RV. I know in the lower 48 people are renting theirs out now instead of them just sitting not used. Love your channel and your family’s big hearts❤️❤️
As a mom, I support you with the port. We never want our children to hurt every time they go into have a procedure, so 1 time putting a port in n 1 time to take it out when he doesn't need it any more, is better then being a pin cushion every time he has to go in for his infusions. God bless y'all, n I'll keep you in prayer.
You keep up the fight Mama! First of all I have a disease called Ehler’s Danlos. With that I have subsequent stuff that goes with it: I have to get a bag of fluids everyday and I have a port. My nurse comes once a week and accesses my port and it stays this way all week: why I am telling you this is please ask for numbing cream to put on before he get accessed. What I do is use a dressing with the cream over the site. I use a generous amount and I leave it on there for at the very least an hour! It has made a huge difference for me with the pain. With him being a child I think this would benefit him. Also you being a Mama bear makes me so happy. I had a baby that was very sick and I had to be like you to push to find out what the heck was wrong with her! This is my first video I have watch about you and your sons journey. I am going to watch all of what you have out. I am here to support you and can’t wait to hear more!
New to your channel but binged all of Landons videos😂 Pediatric nurse here.......YAY port!!!! He will love it, your mama heart will love it! Keep being a kick ass advocate for your beautiful boy❤❤❤
A port is a great decision! My daughter is special needs & has lots of lab work and procedures. I didn't want her poked on constantly so we went from a picc line then to a broviak then to an infuse a port. This & her trach was the nest decisions I've made. I think you will feel the same. Just make sure to get the emla cream to numb it & put it on an hour to hour & 1/2 ahead of time. Happy to hear he's getting stronger. And never feel the need to have to explain him using his chair at all. Its great he doesn't need it much. But if he needs it more then he just does. My daughters in a wheelchair & people can be so rude and mean.
Never underestimate the concerns of a mother ....
Poor boy, took me minutes to conclude a neurological issue.
A little side note
being in the field myself: it helps a lot if you start reading specific documents on that topic. Like Blogs from adults that battling the same or scientific studies on that field.
Most Doctors are thankful for knowledge you can bring in, especially when they aren't specialists neurological or autoimmune issues.
Blessings and best wishes from germany
I pop in occ to check on you. Congrats on all the progress. This month is also Myositis Awareness month a" lovely"autoimmune disease that has several types, strikes all ages and races, has no known cause or cure and only a couple types have effective treatment. One treatment of this muscle destroying disease group is also IVIG, made from plasma and we appreciate everyone who donates plasma as you see with Landon. Of course I have IBM which has no treatment just like Peter Frampton. But my symptoms were beyond this one rare disease and fit the profile for Myasthenia Gravis which is next month. I don't have the antibodies for MG but anyone out there being diagnosed solely by blood work needs to know that Mestinon which is the treatment, not cure, has massively improved my life. Please know these rare diseases affect sooooo many people and like Jessica said they are invisible, variable and hard to get diagnosed, hard to deal with without strong support. If you can donate money or plasma, great. If you can look up these rare diseases and are willing to wear some zebra striped clothes to start conversations, that would be awesome. Thank you. ( do you forgive me Jessica?)
When it comes to our babies we sometimes have to bring out the big mama bear. I am glad he is doing better with treatment. When he gets the port make sure to ask for EMLA cream. It is a skin anesthetic to make sure he won't feel the needle going into the skin over the port.. It does help. My husband had a port for many years due to cancer. Landon having a wheel chair is a good thing. If others don't like it, pooey on them. They don't have to live Landons life. I applaud your proactiveness. Keep it up mamabear.
Your Kindness War with the Leggs really makes me smile. If you're gonna have a war make it one of kindness. I still think you're winning. Yo quiero Taco Bell 🔔 😂🤣😂🤣
😂😂😂 🔔
My youngest was diagnosed with an autoimmune disorder in the arthritis family. They too think an infection triggered her bodies immune response. It took us over two years to get a diagnosis and now still working through medicines that can help as some do not. It sure is hard for us Mamas to watch our babies have to fight.
Don't feel you have to explain your decisions to anyone, you really shouldn't have to and its not anyones place to question❤
Thanks for the update Jessica. Landon has had quite a journey, but is doing so much better. His progress is due to your advocacy and following your Momma gut. Keep doing what you feel is right for your family. On another topic, I love the Kindness War you are having with Adam and Sherri, however I have to say I’m on Team LeggLife on this one. My understanding is that it started over a $5.18 shipping fee, which was hand delivered rather than shipped. Girl, they were right to return the shipping fee. Regardless, so glad this Kindness War started and excited to follow and see how you keep trying to 1-up each other.
As a lady told my daughter. Tell people Ok until you help pay my bills or raise my son you don't have an input on how i parent. Port 100 percent as from someone who is a hard stick. Keep the wheel chair as a security. He's not going to want to be in it if he doesn't have to have it. He's a young boy with energy. Love him and the other babies all you can. You are doing a great job being a mom. Love you
You be that Mother Bear , when you need to be!!! So the Kindness war is still going on!!! Love that you take the time to let us tubies, whats going on, sending lots more prayers. I know first hand that it helps!
YOU HAVE WONDERFUL INSTINCTS REGARDING YOUR SON.....ALWAYS TRUST YOURSELF AND ASK QUESTIONS.....GOD BLESS YOU AND YOUR SWEET FAMILY!!
Jessica, we are all in your balcony, cheering you on and praying for Landon & your sweet fam. Much love & hugs to all of you! xoxo 💞
I found you through LeggLife and I'm glad I did. As a fellow CIDP mama, I just wanted to share with you that you are doing an amazing job advocating for your kiddo. This condition is unique to every kid and becomes a balancing act. And I'm so happy to see more people sharing their story. Happy healing for your little man!!
Good for for being an amazing advocate for your son! I believe us moms know our children the best. ❤️
Haters will be haters. Trust your gut. Moms always know best!
Thats the thing with auto immune issues and hidden disabilities they are hard to get the right diagnosis and its a struggle to find the right doctor to listen and care enough to fight with you to figure it out. Glad you are working and fighting to get the answers he and you all deserve. There are doctors who dont care. There are some that just dont know and you have to find the right one.
Also glad Landon is sort of excited for the port and i know he seems to enjoy the how and why of things so he should for lack of a better word enjoy the science behind what is happening with the tools he is using to help him feel better.
Just wanted to let you know that getting a port was the BEST decision I ever made. Even when my infusions are complete, I will be able to make the decision to keep it for future use where I will have to have it flushed every 4 to 6 weeks or I can have it removed. I have been asked by the nurses where I go for infusions to speak with other patients who were not sure and so far everyone I've spoken with has been happy with their decision as well. Good luck and keep being a great Mom.
Jessica
You go girl . Like you said wheelchair, a port is a tool to make Landon comfortable. Don't let rude people dictate to your Landon's needs.
Mama bear you growl when you need too.❤❤❤
I agree a port is the best option especially if he’s going to get poked repeatedly!!! I think a lot of people associate ports with having cancer!!! If he’s going to have this treatment long term or short term, however long!!! Still better option!!!
I've had a port in my chest on the right side since July 2020 . It was used last year for 4 chemo treatments n blood draws . Now just used for blood draws . I'm glad I have it . It's so nice not getting stuck in my arms . I'm glad to hear that Landon is getting a port . It wias sore for a few days then the discomfort went away . It was put in at the Tampa VA in Interventional Radiology . I was semi sedated & the procedure went well . I have a Bard Power Port Clear-Vue
My daughter got a Port due to bi-weekly infusions for Gaucher Diesase Type 1. Best choice for her. She will probably have infusions for the rest of her life. It saved her veins! Only advice is if they don't offer it request numbing cream before they access it!
Jessica you are totally right about the port. You as a mom know what’s best for Landon, unfortunately it took the Dr to ask why one hadn’t been fitted before now. Stay strong and keep on being a momma bear x. Love from Scotland.
A port is. A good thing, I have one it's so much easier. Bless this young man.
I'm sending some prayers for Landon and Your Family while you are on this journey! 🙏🏻😇👍😎❣️
I'm glad he's getting a port, it's what's best and having him being poked that many times without a port doesn't sound very good for your body. You go mama!! Mom gust are always right and should always be listened too. Sending love from Indiana!! 🙏💖😊
Ignor what everyone has to say about your decisions for Landon. You do what you feel best for your family as you have been doing. You are an amazing Mom and the family is incredible. God has Landon and all of you in his hands.
You are a wonderful Mom! Still praying for Landon and your family.
Hello family! Just a quick little bit of advice since l’ve had a port . If he is a side sleeper try and have it placed on the side he doesn’t sleep on . It sometimes bothered me a bit when sleeping. Wishing your family all the best.
You go momma bear and you take care of your cub the best way you see fit. Don't worry about negative nellies. Your a great Mom and y'all are in God's hands
You are the best mama! Keep having faith in your own instincts. God gave you them for a reason!
I have had a port since 2013 and there have been no issues with it. I needed chemo in 2013 and had poor IV access from all the prior sticks. I love my port lol. I still need to get stuck for routine labs because the lab doesn’t
have nurses to access it, but for surgery or occasional iron infusions it’s a Godsend. Good for you mama, for fiercely advocating for Landon. And best wishes on the surgery and recovery. 🙏🏻
Good for you advocating for him. The port will be so nice for him and such a relief for you all. Love to you all! I'll be thinking about you and keeping you in my prayers.
You are an amazing, inspiring and awesome Mother. Love your family and vlogs.
You are doing AMAZING...
As a Caregiver I fully know each day is a "New Day" & each day a "Different Day"...❤🤗
There are going to be good days & bad with Landon so just take one day at a time...
You are an excellent Mum every parent knows their own children
You are the best advocate for Landon. You do what you & your drs agree on for him.
Have you checked Facebook for a group on Landon’s disease? I have found 2 FB groups for a semi-rare autoimmune disease that I have & it has helped tremendously!!! I have 4 autoimmune diseases so I understand the run-around with drs in Fbks. You have been in my prayers since last year when I found out he had concerns. 🙏🙏🙏❤️
How do we go about crowd-sourcing an RV for the Violett's? ❤❤❤
We fully support this idea.
Amen what about the RV company the leglife used.
Great idea. I’m in.
I have been wondering why he has not had a port before now. He should be happier with the port. If he is a hard stick it will be a breeze. I love my port because I’m such a hard stick. Your making the right decision. Been missing your posts. Love your post.
I am also hyper mobile and it was only recently diagnosed. I spent 1 1/2 years on crutches and have a disability car sticker. I'm generally ok 90% of the time but the 10% of the time I use the crutches and the disability car parks but it takes a lot for me to 'give in' to use it. Keep doing what you are doing, you're doing the best you can and you are doing amazingly well.
You are the BEST Mom ever !!!
Great explanation of Landon's journey. He has come a long way! He's doing so well. I am so happy for all. Stay the course Mom 👍. Keep posting! Blessings to you and your family 🙏
When you need frequent infusions ports are a godsend! I'm not sure why anyone would tell you not to get one. Landon is so lucky to have you advocating for him.
Yes! A port! My first chem trmt was w IVs. Got a port for the rest. That port was awesome. Great decision you all made. Perfect for Landon's frequent infusions.
I had a PICC line and switched to a port over a year ago, and absolutely love having it. I would recommend getting a port pillow for the seatbelt in the car. These have saved a lot of bumps and hurting in the beginning of having my port.
You are so sweet, I love Adam and Sherri, they are a joy to watch!
You are a fantastic mom.
I love my port, I wish I gotten years ago. I'm glad you have the wheel chair with you when you . When we need to stop and sit, it's important
Continue - has any medical staff spoke with you about diet. There are certain foods that will add to the already inflammation one has. I have not heard you mention diet at all. Thinking you need to see a dietitian/nutritionist. Safe travel. Saw on tv somewhere about newer eyelashes that are to be safer (more organic) without the glue presently used. If I see again I will let you know. Good luck. Prayers
I wish nothing but the best for you and your adorable family. And I wish Landon all the best. Don’t listen to anyone else. Follow your heart and mind on Landon’s treatment. He’s your child. You and the doctors know best!
Bless you! You are in my prayers!❤️
My sister had a port while she was going through cancer. You just have to be very careful with it and look out for any signs of infection. I hope it all works out.
This was a great video. It tells a lot from what you have been thru as well as how far Landon has come. Keep up the good work. 👍🏻☺️
You are Landon’s mother. You know him the best. And love him so much! Don’t listen to other’s opinions. You know best and you are very strong. That is why God made you his mother. Stay strong.
Forgot to add - Adam and Sherri are awesome. I might be in the UK but they are so fun!!
You do what's right for your family. I needed a port for a time and they are amazing tools. Hope it helps Landon as much as it helped me.
Jessica you do what you need to do for your family.......you are awesome......sending you virtual hugs and prayers to you and your family from Debbie in Illinois.
You are a fantastic mum don't let people get to you love from Belfast Northern Ireland xxxx ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
You have to make the best decision for your child. you are his best advocate.
YOU DO WHAT YOUR HEART TELLS YOU TO DO
I have had a port for chemo for four years and it’s awesome and I’ve never had a problem. Do what you feel is right mama bear.
My dad had a port for chemo no problems and yes Adam and Sherri are awesome
I have autoimmune disease too! I have had it for 18 years! I am so glad that there is IVIG that can help him. praying for you all violett family keeps trusting the Lord. This journey is long and tiring but when stability happens and the doctors find a sweet spot. There is victory in Jesus's shed blood. praying for you all psalm 121: 1-2
You’re his Mom. You have to do what you feel is right for your son. You obviously do your research. Follow what your gut tells you to do. Ignore the naysayers. Praying for your son and your family. God Bless.
Thank you for the update💞💞 I also love Legglife.. They are the kindest people💞💞 I'm so glad that Landon is getting his port💙💙 #stillprayingforlandon..
Today is 11/ 05/ 22, a blessing to watch this!! You are fab parents! Hope ur son is much better! Sad they did not find problem much sooner! I m trying to find/ current recent update! Obviously 5 months 2 years ago,, of agony ,,, knowing he suffers, so stressful to all.
You've done an awesome job advocating for Landon! BTW, I had to have some infusions that were only going to be for @6 mos (every 3 weeks) and they automatically put in a port. I had it taken out after the infusions ended. I am older ,so it may be somewhat different for a child, but It was easy putting in and even easier taking out. I think it makes it easier on the medical staff if you have one. Regardless, it was super easy and no maintenance between infusions. Best to you and your family
CONTINUED PRAYERS FOR LANDON & THE ENTIRE FAMILY GODS BLESSINGS LOVE PROTECTION GUIDANCE & HEALING from West Central Indiana Farmland ✝️🇺🇸🥰🚜😇
Glad to hear you made the decision for a port. I don't think you will regret it. It's a real useful tool. 👍
👍 for the port, I had one when i went through chemo, they r wonderful, make sure though he has a numbing cream or he won't like the port, also the best way to keep the numbing cream on the port site is to get tegaderm to cover it and keep it the place it is supposed to be, in fact I still have my port and I've been done with all my treat.ents since the beginning of March. I bought my tegaderm off of Amazon. Get the 2 3/8 by 2 3/4 in size.
You are a Super Mom just know that #1 I really know you are doing everything possible for Landon and your family. You have held everything together your are Amazing!!! This video is the Best!
You are an Awesome Mom. Love your hair. God Bless your day.
Omg Jessica i am glad you are blessed with meeting such great friends such as yourself. LEGGLIFE rocks. Hugs beautiful lady.
🤗🤗🤗. FINALLY am able to catch up on some videos of people I do care about and your family is high on the list. Jessica take advantage of this venue to pour out your soul to others that care about you and this current journey you’re on cus sometimes it’s better than constantly rehashing everything with your husband. I’m certain he’s talked to others just to get a different point of view just as you’ve done too. You both are a perfect and strong team and am certain he realizes the load you carry always being the one who is at every appointment. Still you both have that special bond that together you can accomplish anything. About the port please close your ears to those opinionated people who are Debbie Downers about everything. Having had one myself trying to find the right pain medications and several times a week having veins collapse and rupture it was a God send and I only had one infection in 10 years. Oral meds led to gastric problems and more surgeries for relief. This not about me but how well the port did for me and will be so much better for your little fearless warrior whose battle may continue for way too long. Excellent idea about the wheelchair cus you just never know when needed and of course he wants to be doing things with family and friends. It’s his attitude and yours as well that will get ya through things just as if they don’t exist. So am glad that I’m part of an army of believers who pray for Landon’s success and for your entire family to get through this and anything else that may happen. Keep that glowing smile of yours and especially your attitude. You are stronger than you think and with all of us supporting you God will hear our prayers and keep that precious smile that you’ve given Landon to work through all of this towards good health in his future. So glad you opened up some more so that we can give praise to God for the little steps of Landon’s progress. And pray that this will be remembered as a small bump in the road. 🙏🙏🙏🙏🙏🙏🙏👍👍👍👍👍👍❤️❤️❤️❤️