Someone said they are emotionally invested in Shane's life. This is so true. I go on youtube daily to see their videos and if 3 days go by with no video I go into panic mode. I'll go one extra. When they say when he is going to appointments I always put it in my appointment calendar so I can give Shane a little extra thought and send positive vibes. I might need a life or a hobby. I have 5 kids and as if that isn't enough to deal with and worry about I have emotionally adopted Shane as my 6th kid lol
Everyone in the comments expressing their frustration with America’s broken health care system, remember this when you vote. Remember Shane and others in similar situations when you vote. Remember to vote with compassion.
Insurance is one thing... its the COST of the drug/drugs where the real problem lies! Apparently (squirmy and grubs can chime in if im wrong) they charge 100k per injection which is RE-diculous for a life saving drug!
Hey Shane, I get nervous when they’re drilling a hole in my tooth. But on a positive note, at least you have a spine. I’ve met many people throughout my life that were spineless!
I'd be more than grumpy if some pen pusher in a health insurance company had my life in their clammy hands. It's immoral to hold people to ransom in my country. In America, they call it "healthcare". 😤
It's easy to forget that doctors and radiologists work for you. In essence you really are the customer even as a patient. If you want your injection like you have always had it, they need to make that possible for you, in addition you absolutely have a right to consult with the radiologist ahead of time, if for no other reason than to reduce your stress. You guys are incredibly nice people but often I find you have to be really firm and direct when it comes to medical needs. The squeaky wheel gets the grease, no pun intended. 😉 Love you guys and your channel. Keep up the good work! 💙
I love all the support that Hannah's family give. Hannah and Liz look so much alike, 2 beautiful women and a handsome man. Thanks for all you guys advocate for. You truly make us laugh and smile through everything, thanks guys!!
Seeing that you guys had posted a new video was the one of the only good parts of a really terrible day for me. I have a genetic disability that, among other things, impacts my immune system, and today was tough because someone told me that it doesn’t matter if I die of the Coronavirus because I’m “weak” and that’s “darwinism.” I know that the person is unbelievably ignorant and completely wrong, but sometimes hearing that kind of cruel and hurtful stuff gets me down even if I know the person is just being bigoted and ridiculous. Then I saw that you guys had posted, and my heart got a little happier. So I just wanted to say thank you guys so much for sharing your lives with us. On days when the ableism of our world starts to crush me, watching your videos is one of the ways I can find strength and self-love again. Anyways I know this comment is long and rambling and not really related to anything, but I just wanted to tell you guys how much your videos mean to me and how much I appreciate all the good you guys are doing for the world 💕💕💕💕
This is amazing, my nephew has SMA type 2 and he’s just turned 10, he’s so creative, bright and brilliant. I see a lot of the same mannerisms in you as I do in him. I came across you both from a post on Instagram you both are an inspiration, I’ve got him watching your videos and laughing with you both already. Thank you for bringing light to the world. We’re in the U.K. and unfortunately Spinraza hasn’t been made available for us yet. But i hope it will be soon!
You two are so endearing and you always manage to make me laugh, even if the topic is quite serious. Good luck with all this and I hope you get your last injection really soon, the things we have to go through!
Shane your poise during these heartbreaking setbacks is unbelievable. You guys are both so gracious. I'm also glad you wore your "I Voted" stickers. This upcoming election is for the soul of our country and is so important for those depending on affordable health care.
Ok, I watched 1 video of you on Facebook, and totally fell in love with both of you. I am now watching your vlogs from the beginning. I am disabled due to a variant of spina bifida. I watch you guys right before bed so that my day can end on a good note. Thank you so much for the positive content!!
I’ve never commented before up here but you know I can’t help but say I adore you both! It is so sad how too many people base things on first looks only. The more I watch Shane the more I can totally see the attraction. I love his smile best of all and a sense of humor is so what I look for. I wish you both many days of happiness and continued love. You both just are made for each other! So many of us never find our “person”. You are both so lucky! Thanks for letting us into your life. I hope you guys continue to get more subscribers. I can’t wait for the next video every time! Xoxo
I saw a video on Instagram about the two of you. I wish you both the very best and a successful perfect future. Despite what your going through Shane, you're a very lucky individual to have such an angel like Hannah who's there for you. You both look very happy together and if you ask me, if you love and enjoy being with each others company, the world is yours for the taking. The fun, the travels, the memories. It's a shame people judge and assume things, sadly we all do it, but I'm so happy to see how you both find away to make things work despite how difficult it must be. At the end of the day, relationships are built on trust, faith, love and teamwork and from where I stand, you've got it all to make your relationship a lovely one :)
Please do keep us updated...You are incredibly brave. As if insurance nonsense isn't enough to wade through, it really does seem reasonable enough a request to speak to radiology ahead of time for both parties to familiarize & compare notes. You sure have my support! Love you guys.
Shane, I hope all is going to go well for you. Don't forget there is the patient's bill of rights and they can't stop you from talking to the Radiologist. I just saw my Neurosurgeon on Friday and she is going to do a spinal fusion of my C4-5-6-7 after some nice shavings down of the vertebrae and put in prosthetic discs since I have none left to speak of. I went through 10 years of injections and they are not fun. I'm a little baby too since I have been putting this surgery off for 18 years. but the relief it should bring will be welcome. I will say prayers for you. If you ever need a Great Neurologist, mine is wonderful and she is right downtown MN at Healtheast Neuro Sciences. All the best bro
I would INSIST on a conversation with your anesthesiologist before day of!!! Your peace of mind and confidence in both the procedure AND the physicians is very, very important!!! That being said, attitude is everything and you have to decide to trust The Force, Luke! You got this!!!❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
Keeping y’all in my thoughts and prayers. Sending a lot of love towards you two! Hopefully y’all won’t need to have a hole in Shane’s spine and everything works out💗💗
Sending you good vibes and hope you get what you need. I know you are a strong advocate for yourself and what you feel you need. I am happy you have Hannah and her mom by your side.
Just popping on to tell you that my 2021 goal was to watch through your videos from the start (since ive only been a subscriber for about a year). So far, im here (its Jan 19th). I also bought both books and am about half way done with strangers assume (the other hasnt arrived yet). Thanks for being such a fun uplifting ray of light during these otherwise crappy times. Love you both (and Chloe!)..
Hey! It’s your favorite mom fan from NH! The one who sports your bumper sticker and met you at the meet and greet in NYC :). Anyhow, I work in Biologics (have for 21 years!) and I’m hoping there will soon be a gene therapy that treats SMA for Shane. I know there is one in clinical trials for SMA 1; my company currently produces monoclonal antibodies for many illnesses and recently has entered the cell and gene therapy arena and it’s very exciting science. Good luck!
I’m so sorry that you have to go through this stuff. It’s ridiculous really! To know for sure that something helps, it’s sad! Makes me want to say bad words! I’ll be thinking of you Shane! and Hannah, I’d want you on my side! Love to you guys
You got this guys!!!! Shane, my thoughts are with you, you’ll be just fine!! Hannah, girl, you are the absolute strongest. I aspire to be more like you in my relationship
Hi again S&H Keep those positive thoughts going and your prayers too! Don't blame you at all Shane! Don't think anyone would be thrilled to do the hole thing! But if you must have it then it becomes a VIP thing and you will be glad you did!!! Hope all goes good leading up to that with all the particulars. Take good care you two and thx as always for sharing... God bless
I cannot express how upsetting it is for me to hear what a difficult time you are having getting your Spinraza injection. The whole entire thing is ridiculous. From not being allowed to continue your injections in the hospital where you have been having them. It’s almost like the insurance company is once again trying to make it as difficult as possible for their patients to get what they need. And you can bet your bottom dollar that every ridiculous decision they are making somehow increases the money in their pocket. It makes me sick. They absolutely don’t care at all about their patients. I’m sorry but I’m just so upset and pissed off that you both have to go through this. Hang in there. I will be praying that it all works out and that you feel better than ever Shane. Love to you both💖
Omg, when Hannah hauled out that drill I almost died! Shane, you're something else. And that baby talk was so CUTE! You guys are amazing. As you were explaining drilling the cervical spine hole, I could feel myself getting so anxious. I'm sure everything will turn out okay because you've got the best doctors in the area. I can't say I appreciated that doctor's airplane analogy. Love you guys!
This is ridiculous. Insurance companies need to be taken down. If your doctor says you need the Spinraza, that should be sufficient. They shouldn't make you jump through hoops. Insurance companies are only concerned about their bottom line. They have no concern about the welfare of the patient. This infuriates me. I have had my own issues with insurance companies. I wish you luck and hopefully you can get your treatment soon.
Love both of you so much!! Came across squirmy and grubs Friday and have watched almost all your vids. Lol. Can you say squirmy and grubs binge... love the realism and love shared between you both. Shane you’ve really inspired me. 7 years ago I was diagnosed late on set CMT and mobility has gone down but love your positivity. Squirmy and grubs keep up the good work and God bless.
That's crazy! No drilling holes!!! I would want to talk to the Dr that is going to have you life in their hands too. It will go smoothly and you'll be on the oral meds before you know it. Much love to you both
I Have seen a very Big Change in the past 3 months. Especially since January. Last Couple of Vids I have considerable noticed a very big improvement with Shane; considering I became aware of this treatment 3 months ago I was concerned about his discomfort going thru the appointment. Now after seeing for myself and hearing testimony and seeing improvement from this medicine I can definitely make a conclusion that Shane will inevitably have more function and more body movement than before. Shane will be able to stretch and move the body as well as maintain more healthy body and muscle fat relative ho him.
Hey mate x2 just saw your video on Unilad, instagram. Just wanted too come subscribe and say you two are amazing and I hope the treatments are going well This is some genuine real love you never see nowadays and it made me smile cheers for that btw. Keep up the great content I will now be watching your videos on the daily. Awesome stuff
Is good to be able to say "hello everyone" from far away with everything that is happening with the corona virus 😅 be safe!! I follow Squirmy and Grubbs from Argentina. God bless you all.
I don't know. They are talking about it more and more and you wonder if there is more to it than what they are actually letting us know. Don't want to be neurotic about it, I had it in mind when I commented. Be safe, wash your hands 😂
@@lafamanca I recommend you watch Doctor Mike's videos about the Coronavirus. Of course, take all the necessary safety measures but there isn't really much cause for panicking. Besides, a lot of people have already recovered from it. Stay safe!
Hey Shane! The medical mess that is insurance and communication with doctors can be so taxing! Praying for you guys and that situation! I know how frustrating it can be! My own medical issues has caused bumps in the road with insurance. Hang in there! Excited that this may be your last Spinraza injection though! Hoping that the oral medication won’t be a ridiculous price like all new meds!
Wishing you the very best. I’m sorry the insurance companies are such slimeballs. Shane, your sense of humor is EXCELLENT. I wish more people had the attitude you do. 💪🏼 ✨
I’m surprised you can’t talk to the Radiologist until the day of. I had a significant surgery at the Mayo Clinic in AZ and I was required to have an appointment a week before my surgery to discuss details of the surgery and answer my questions, instead of meeting with him right before surgery which I also did. It was very helpful.
Sending you my love and support! Thanks for sharing this kind of info with us, and showing us how this shit can be scary. But it shows how strong you are, hoping the best for ya!
I confess... I am one of those people that you mentioned in your previous video that got worried when you didn’t post a video for awhile. That’s when I realized that I may be a little to invested here lol. This is the only channel that I watch faithfully. You guys are just so hilarious and I love the adventures you go on. ☺️
OMG! Insurance hassles! We just went through the same thing for a new CPAP. My husband has had one for years but now has to be rediagnosed, retested and blah blah blah. It has taken months. I feel for you! I hope they sort it all out soon.
Aww. So sweet! Insurance companies need to wake up and realize that some people just need to maintain and not improve. Be positive like you always are and let's hope the FDA approves oral form of Spinraza ASAP and that somehow you get the radiologist to talk to you before the procedure! Love you guys. And Liz. Lol.
When you have a medical problem and have to deal with medical professionals and INSURANCE in the US, you are guaranteed drama , delays and frustration. You are in my thoughts.
Gigi Dodson uh hmm like when you’re in a country with socialized medicine doesn’t take forever to get to see a dr. Thanks, but I’ll take my chances here where I don’t wait months to see a specialist.
@@kimkincaid5667 Um, I have cystic fibrosis... a genetic disease that I was born with... my family and I have been dealing with insurance since I was a child. I'm 54 yrs old now and I have amazing insurance and I've never waited at all to see a specialist! USA is an amazing country I'm happy to live here!
I wish you all the best Shane, and that whatever procedure they do to get that Spinraza into you, will be successful and with no issues afterwards. I think Hannah is right, if you only need one more dose like this and then can do the oral afterwards, it's not worth it to put a hole in your spine. That's crazy! I don't blame you one bit for not wanting that - I don't think anyone would. Hope everything goes well! Looking forward to an update about that! Take care :)
I pray the insurance company sorts their nonsense out & the radiologist administers your Spinrazza the way you typically get it & you won’t need a hole drilled in your spine & most of all I pray things go smoothly for you once all the BS has been dealt with. I will keep you both in my prayers, I think you’re an amazing couple.
You are both beautiful and amazing people who are amazing together. You have both got so much to face what you are both having to go through and that you have Liz too. Amazing family. Thinking of you all. Xx
Wow, I think that the radiologist should have a conversation with you before hand and that you are able to ask all kinds of questions and expect answers. Your a great couple, don’t let anyone pull the wool over you. Xxx
I was wondering which Mayo you guys were going to but I see you live in Minnesota so obviously your in Mayo Rochester . It's a beautiful place that has saved my life and a few of my friends lives. Thank God for Mayo clinic 🙏🙏🙏.
The haters will be so pleased to hear about your transition. 😂 Also, the hard audio cuts from the music to Shane talking was 👌 imo. Good luck with everything, guys. A lot of that does sound scary, but I know you two will make the right call and get through it. ❤
Despite its problems thankful for the national health service in the UK. Best wishes to your both and can not imagine what seems to be a health lottery in the US on top of all the other issues you need to address
All couples have strange little sayings ect. It’s very cute guys. Totally feel your anxiety about it all. What a horrid time. You will get through it and yes Shane you are stronger now to get through it. Bless you honey. Feel for you and feel like a baby as often as you like. I’m sucking my thumb with you. Big hugs xxxx 💖💖💖💖
Praying hard for you guys- the insurance/ medical hurdles that have to be jumped through can be RIDICULOUS!! Then if someone along the line takes their sweet time or drops the ball in the process....it’s infuriating!’ These are important matters! Ugh!! I find it odd and even sketchy that they don’t want you to talk to them beforehand!! It should be the absolute opposite! That in itself is angering in my opinion! Sending you prayers and love always-❤️❤️❤️🙏🏼 🤘🏼✌️
I have had a Lumbar Epidural Injection, something the insurance requires before even going into spinal surgery to fuse your lower spinal area, its' not guaranteed to work or even hit the right area, I don't know how pregnant woman do it, I screamed and had 4 nurses literally hold me down. Hannah, you look great, your parents raised right, your mom, well lets say, I wish she could adopt me, Shane's sense of humor takes away from his disability, I get it, humor helps me forget any negativities in my own disabilities, when you can look passed the disability, the whole world is a more friendly place to be in
Yes insurance now does suck thanks to "prior presidencies". SO many people are suffering because of this. I have worked in customer service for 30 years and have seen the changes and it was SO hard for me to try to convience the insured how their coverage will work for them. I pray for you Shane to be able to get the treatment you need AND get the coverage you dserve!!
We all need a Liz in our lives. Next best thing? You sharing yours. Incredible love and support from family, friends, and fans for you two.
Betsy Lindsay Aw, thank you!!
Mama Bear I mean every word of it!
Liz is absolutely the BEST!❤️
Liz amazes me. What a beautiful soul!
Someone said they are emotionally invested in Shane's life. This is so true. I go on youtube daily to see their videos and if 3 days go by with no video I go into panic mode. I'll go one extra. When they say when he is going to appointments I always put it in my appointment calendar so I can give Shane a little extra thought and send positive vibes. I might need a life or a hobby. I have 5 kids and as if that isn't enough to deal with and worry about I have emotionally adopted Shane as my 6th kid lol
Everyone in the comments expressing their frustration with America’s broken health care system, remember this when you vote. Remember Shane and others in similar situations when you vote. Remember to vote with compassion.
It doesn’t matter-Russia puts whom they want in Office!
This insurance foolery is so frustrating. I pray everything works out quickly.
Insurance is one thing... its the COST of the drug/drugs where the real problem lies! Apparently (squirmy and grubs can chime in if im wrong) they charge 100k per injection which is
RE-diculous for a life saving drug!
Leah Unfeigned when I turned 65 I found out I would no longer be on some long term meds unless I jumped the Mississippi. Stinks!
Hey Shane, I get nervous when they’re drilling a hole in my tooth. But on a positive note, at least you have a spine. I’ve met many people throughout my life that were spineless!
Jermiester777 Lol 😂
Hang around with Senators a lot do you ?
Best comment ever lol
Jermiester777 you must know a lot of politicians 🤣🤣
😂
I'd be more than grumpy if some pen pusher in a health insurance company had my life in their clammy hands. It's immoral to hold people to ransom in my country. In America, they call it "healthcare". 😤
And tons are brainwashed to believe thats just how its supposed to be. Sad.
What country are you in?
@@purplesage2621 🇬🇧
It's insane that insurance can deny something your doctor thinks you need.
Yup, I think it is immoral to be able to turn a huge profit with stockholders etc, based on someone's life and death.
It's easy to forget that doctors and radiologists work for you. In essence you really are the customer even as a patient. If you want your injection like you have always had it, they need to make that possible for you, in addition you absolutely have a right to consult with the radiologist ahead of time, if for no other reason than to reduce your stress. You guys are incredibly nice people but often I find you have to be really firm and direct when it comes to medical needs. The squeaky wheel gets the grease, no pun intended. 😉 Love you guys and your channel. Keep up the good work! 💙
I love all the support that Hannah's family give. Hannah and Liz look so much alike, 2 beautiful women and a handsome man. Thanks for all you guys advocate for. You truly make us laugh and smile through everything, thanks guys!!
Sending you both love and prayers. Shane, you are going to be just fine. You are a strong man and fighter. You are like Rocky ...
Seeing that you guys had posted a new video was the one of the only good parts of a really terrible day for me. I have a genetic disability that, among other things, impacts my immune system, and today was tough because someone told me that it doesn’t matter if I die of the Coronavirus because I’m “weak” and that’s “darwinism.” I know that the person is unbelievably ignorant and completely wrong, but sometimes hearing that kind of cruel and hurtful stuff gets me down even if I know the person is just being bigoted and ridiculous. Then I saw that you guys had posted, and my heart got a little happier. So I just wanted to say thank you guys so much for sharing your lives with us. On days when the ableism of our world starts to crush me, watching your videos is one of the ways I can find strength and self-love again. Anyways I know this comment is long and rambling and not really related to anything, but I just wanted to tell you guys how much your videos mean to me and how much I appreciate all the good you guys are doing for the world 💕💕💕💕
This is amazing, my nephew has SMA type 2 and he’s just turned 10, he’s so creative, bright and brilliant. I see a lot of the same mannerisms in you as I do in him. I came across you both from a post on Instagram you both are an inspiration, I’ve got him watching your videos and laughing with you both already. Thank you for bringing light to the world. We’re in the U.K. and unfortunately Spinraza hasn’t been made available for us yet. But i hope it will be soon!
Why am I so addicted to you guys? Simply Awesome LOVE
You two are so endearing and you always manage to make me laugh, even if the topic is quite serious.
Good luck with all this and I hope you get your last injection really soon, the things we have to go through!
Hi Liz,, you are a wonderful supportive person.
Shane your poise during these heartbreaking setbacks is unbelievable. You guys are both so gracious. I'm also glad you wore your "I Voted" stickers. This upcoming election is for the soul of our country and is so important for those depending on affordable health care.
Ok, I watched 1 video of you on Facebook, and totally fell in love with both of you. I am now watching your vlogs from the beginning. I am disabled due to a variant of spina bifida. I watch you guys right before bed so that my day can end on a good note. Thank you so much for the positive content!!
I’ve never commented before up here but you know I can’t help but say I adore you both! It is so sad how too many people base things on first looks only. The more I watch Shane the more I can totally see the attraction. I love his smile best of all and a sense of humor is so what I look for. I wish you both many days of happiness and continued love. You both just are made for each other! So many of us never find our “person”. You are both so lucky! Thanks for letting us into your life. I hope you guys continue to get more subscribers. I can’t wait for the next video every time! Xoxo
I saw a video on Instagram about the two of you. I wish you both the very best and a successful perfect future. Despite what your going through Shane, you're a very lucky individual to have such an angel like Hannah who's there for you. You both look very happy together and if you ask me, if you love and enjoy being with each others company, the world is yours for the taking. The fun, the travels, the memories. It's a shame people judge and assume things, sadly we all do it, but I'm so happy to see how you both find away to make things work despite how difficult it must be. At the end of the day, relationships are built on trust, faith, love and teamwork and from where I stand, you've got it all to make your relationship a lovely one :)
Please do keep us updated...You are incredibly brave. As if insurance nonsense isn't enough to wade through, it really does seem reasonable enough a request to speak to radiology ahead of time for both parties to familiarize & compare notes. You sure have my support! Love you guys.
Keep fighting the both of you. You deserve the best care available. Good luck on getting appointments and approval quickly
Shane, I hope all is going to go well for you. Don't forget there is the patient's bill of rights and they can't stop you from talking to the Radiologist. I just saw my Neurosurgeon on Friday and she is going to do a spinal fusion of my C4-5-6-7 after some nice shavings down of the vertebrae and put in prosthetic discs since I have none left to speak of. I went through 10 years of injections and they are not fun. I'm a little baby too since I have been putting this surgery off for 18 years. but the relief it should bring will be welcome. I will say prayers for you.
If you ever need a Great Neurologist, mine is wonderful and she is right downtown MN at Healtheast Neuro Sciences. All the best bro
Thank you for showing us what true love looks like. All the ups and downs and you are still there for each other 100%.
I would INSIST on a conversation with your anesthesiologist before day of!!! Your peace of mind and confidence in both the procedure AND the physicians is very, very important!!! That being said, attitude is everything and you have to decide to trust The Force, Luke! You got this!!!❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
Keeping y’all in my thoughts and prayers. Sending a lot of love towards you two! Hopefully y’all won’t need to have a hole in Shane’s spine and everything works out💗💗
Sending you good vibes and hope you get what you need. I know you are a strong advocate for yourself and what you feel you need. I am happy you have Hannah and her mom by your side.
Just popping on to tell you that my 2021 goal was to watch through your videos from the start (since ive only been a subscriber for about a year). So far, im here (its Jan 19th). I also bought both books and am about half way done with strangers assume (the other hasnt arrived yet). Thanks for being such a fun uplifting ray of light during these otherwise crappy times. Love you both (and Chloe!)..
We all love you both very much oh and thank you for putting the intro back with audio!
Love how kind you are to one another! Love is cool.
I am in the uk and we have nhs I cant imagine how frustrating getting insurance for health care must be! Hope you get your spinraza on time Shane
X
You are both such good people, wishing well and sending love to you both.
Hey! It’s your favorite mom fan from NH! The one who sports your bumper sticker and met you at the meet and greet in NYC :). Anyhow, I work in Biologics (have for 21 years!) and I’m hoping there will soon be a gene therapy that treats SMA for Shane. I know there is one in clinical trials for SMA 1; my company currently produces monoclonal antibodies for many illnesses and recently has entered the cell and gene therapy arena and it’s very exciting science. Good luck!
I’m so sorry that you have to go through this stuff. It’s ridiculous really! To know for sure that something helps, it’s sad! Makes me want to say bad words! I’ll be thinking of you Shane! and Hannah, I’d want you on my side! Love to you guys
You got this guys!!!! Shane, my thoughts are with you, you’ll be just fine!! Hannah, girl, you are the absolute strongest. I aspire to be more like you in my relationship
Hi again S&H
Keep those positive thoughts going and your prayers too!
Don't blame you at all Shane! Don't think anyone would be thrilled to do the hole thing! But if you must have it then it becomes a VIP thing and you will be glad you did!!!
Hope all goes good leading up to that with all the particulars. Take good care you two and thx as always for sharing...
God bless
I pray everything goes alright .What ever you chose to do.
My thoughts are with you Shane ! You are one tough guy ! Cheers 👍
Insurance companies suck!!! THIS shouldn't even be an issue!!!! UGH
Makes me so upset!🤬
You two are hilarious together! Thanks for the videos
Hey, I get mine in my lumbar spine through the side. So if you need someone to chat with about the option, I’ll be around!
I love how you both always find humor in challenging situations.♡
Wishing you strength on this tough journey.
Thank you guys for another wonderful video
I love how you two can laugh and make jokes about such a serious procedure. Also, you both look great in this lighting.
I cannot express how upsetting it is for me to hear what a difficult time you are having getting your Spinraza injection. The whole entire thing is ridiculous. From not being allowed to continue your injections in the hospital where you have been having them. It’s almost like the insurance company is once again trying to make it as difficult as possible for their patients to get what they need. And you can bet your bottom dollar that every ridiculous decision they are making somehow increases the money in their pocket. It makes me sick. They absolutely don’t care at all about their patients.
I’m sorry but I’m just so upset and pissed off that you both have to go through this. Hang in there. I will be praying that it all works out and that you feel better than ever Shane. Love to you both💖
Omg, when Hannah hauled out that drill I almost died! Shane, you're something else. And that baby talk was so CUTE! You guys are amazing. As you were explaining drilling the cervical spine hole, I could feel myself getting so anxious. I'm sure everything will turn out okay because you've got the best doctors in the area. I can't say I appreciated that doctor's airplane analogy. Love you guys!
This is ridiculous. Insurance companies need to be taken down. If your doctor says you need the Spinraza, that should be sufficient. They shouldn't make you jump through hoops. Insurance companies are only concerned about their bottom line. They have no concern about the welfare of the patient. This infuriates me. I have had my own issues with insurance companies. I wish you luck and hopefully you can get your treatment soon.
I will praying for you Shane that everything will work out for the best.
Love both of you so much!! Came across squirmy and grubs Friday and have watched almost all your vids. Lol. Can you say squirmy and grubs binge... love the realism and love shared between you both. Shane you’ve really inspired me. 7 years ago I was diagnosed late on set CMT and mobility has gone down but love your positivity. Squirmy and grubs keep up the good work and God bless.
That's crazy! No drilling holes!!! I would want to talk to the Dr that is going to have you life in their hands too. It will go smoothly and you'll be on the oral meds before you know it. Much love to you both
Positivity and best of luck
I Have seen a very Big Change in the past 3 months. Especially since January. Last Couple of Vids I have considerable noticed a very big improvement with Shane; considering I became aware of this treatment 3 months ago I was concerned about his discomfort going thru the appointment. Now after seeing for myself and hearing testimony and seeing improvement from this medicine I can definitely make a conclusion that Shane will inevitably have more function and more body movement than before. Shane will be able to stretch and move the body as well as maintain more healthy body and muscle fat relative ho him.
I will start a S & G prayer chain for you Shane! Think positively, and pray that the Insurance Co will work in your favor. We're rooting for ya! 👍👍😁
Hey mate x2 just saw your video on Unilad, instagram.
Just wanted too come subscribe and say you two are amazing and I hope the treatments are going well
This is some genuine real love you never see nowadays and it made me smile cheers for that btw.
Keep up the great content I will now be watching your videos on the daily. Awesome stuff
Praying everything moves fast and forward. It will be ok.
HUGE HUGS to you both!!!!
Is good to be able to say "hello everyone" from far away with everything that is happening with the corona virus 😅 be safe!!
I follow Squirmy and Grubbs from Argentina. God bless you all.
54m4n74 corona much less than Ebola or swine flu.
I don't know. They are talking about it more and more and you wonder if there is more to it than what they are actually letting us know. Don't want to be neurotic about it, I had it in mind when I commented. Be safe, wash your hands 😂
@@lafamanca I recommend you watch Doctor Mike's videos about the Coronavirus. Of course, take all the necessary safety measures but there isn't really much cause for panicking. Besides, a lot of people have already recovered from it. Stay safe!
Hey Shane!
The medical mess that is insurance and communication with doctors can be so taxing! Praying for you guys and that situation! I know how frustrating it can be! My own medical issues has caused bumps in the road with insurance. Hang in there! Excited that this may be your last Spinraza injection though! Hoping that the oral medication won’t be a ridiculous price like all new meds!
Wishing you the very best. I’m sorry the insurance companies are such slimeballs. Shane, your sense of humor is EXCELLENT. I wish more people had the attitude you do. 💪🏼 ✨
I’m surprised you can’t talk to the Radiologist until the day of. I had a significant surgery at the Mayo Clinic in AZ and I was required to have an appointment a week before my surgery to discuss details of the surgery and answer my questions, instead of meeting with him right before surgery which I also did. It was very helpful.
Sending you my love and support! Thanks for sharing this kind of info with us, and showing us how this shit can be scary. But it shows how strong you are, hoping the best for ya!
We're Spinraza twins! I'm getting #6 on 3/11. Feeling the slump so hoping you get it soon!
Mate, that's good but scary news!
I seriously hope everything works out 100% perfect for you. 👍🏽
lol y'all are hilarious love this channel. Love the positive attitudes. New Subscriber.
I'm praying for you two that this works out. Best of wishes that it can be done the way you want it to be done. Much love to you both.
you two crack me up, your humour is amazing, I hope everything goes fine, and no 'risky' holes..
I confess... I am one of those people that you mentioned in your previous video that got worried when you didn’t post a video for awhile. That’s when I realized that I may be a little to invested here lol. This is the only channel that I watch faithfully. You guys are just so hilarious and I love the adventures you go on. ☺️
And I think it is RIDICULOUS that Shane needs Spinraza or not is even a question. But the joy you two carry though the stress is beautiful.
OMG! Insurance hassles! We just went through the same thing for a new CPAP. My husband has had one for years but now has to be rediagnosed, retested and blah blah blah. It has taken months. I feel for you! I hope they sort it all out soon.
Prayers coming your way.
Ahh! What a predicament! All I can say is I pray for the very best outcome whichever route must be taken. Love and hugs to you both!
Aww. So sweet! Insurance companies need to wake up and realize that some people just need to maintain and not improve. Be positive like you always are and let's hope the FDA approves oral form of Spinraza ASAP and that somehow you get the radiologist to talk to you before the procedure! Love you guys. And Liz. Lol.
When you have a medical problem and have to deal with medical professionals and INSURANCE in the US, you are guaranteed drama , delays and frustration.
You are in my thoughts.
You saw me on the Skype inter view in the libary
Gigi Dodson uh hmm like when you’re in a country with socialized medicine doesn’t take forever to get to see a dr. Thanks, but I’ll take my chances here where I don’t wait months to see a specialist.
@@kimkincaid5667 Um, I have cystic fibrosis... a genetic disease that I was born with... my family and I have been dealing with insurance since I was a child. I'm 54 yrs old now and I have amazing insurance and I've never waited at all to see a specialist! USA is an amazing country I'm happy to live here!
I wish you all the best Shane, and that whatever procedure they do to get that Spinraza into you, will be successful and with no issues afterwards. I think Hannah is right, if you only need one more dose like this and then can do the oral afterwards, it's not worth it to put a hole in your spine. That's crazy! I don't blame you one bit for not wanting that - I don't think anyone would. Hope everything goes well! Looking forward to an update about that! Take care :)
I pray the insurance company sorts their nonsense out & the radiologist administers your Spinrazza the way you typically get it & you won’t need a hole drilled in your spine & most of all I pray things go smoothly for you once all the BS has been dealt with. I will keep you both in my prayers, I think you’re an amazing couple.
You two are absolutely precious humans who my hubby and I would for sure become fast friends with... bless you and your growing family
You two are sooooo funny! You asked for a finger and she immediately just did it! The love between the two of you is AWESOME!!!
You are both beautiful and amazing people who are amazing together. You have both got so much to face what you are both having to go through and that you have Liz too. Amazing family. Thinking of you all. Xx
I can only offer thoughts and prayers, but I really hope for the best of luck on your prognosis. The two of you brighten mine and many others days.
Wow, I think that the radiologist should have a conversation with you before hand and that you are able to ask all kinds of questions and expect answers. Your a great couple, don’t let anyone pull the wool over you. Xxx
Lately I'm finding you really, really funny! I guess I've turned into your humour 100% now. Thanks for your lovely vlogs. Love and hugs from South and
You all are so entertaining. I hope that Shane can get the oral meds and no holes needed. 🙏 Prayers for the best on your Spinraza day.😃
You got this ! I will pray for you both
I was wondering which Mayo you guys were going to but I see you live in Minnesota so obviously your in Mayo Rochester . It's a beautiful place that has saved my life and a few of my friends lives. Thank God for Mayo clinic 🙏🙏🙏.
Hi Shane and Hannah, i have recently found your guys' story and i really admire your relationship and it brings me joy whenever i watch u guys.😍
Praying for you guys. You guys got this ❤️❤️
The haters will be so pleased to hear about your transition. 😂 Also, the hard audio cuts from the music to Shane talking was 👌 imo. Good luck with everything, guys. A lot of that does sound scary, but I know you two will make the right call and get through it. ❤
Despite its problems thankful for the national health service in the UK. Best wishes to your both and can not imagine what seems to be a health lottery in the US on top of all the other issues you need to address
Prayers to you Shane. Insurance is the pits! One time it's ok then the next it's not....makes it difficult for patient. Ugh! Love you two so much 🙏💗
All couples have strange little sayings ect. It’s very cute guys. Totally feel your anxiety about it all. What a horrid time. You will get through it and yes Shane you are stronger now to get through it. Bless you honey. Feel for you and feel like a baby as often as you like. I’m sucking my thumb with you. Big hugs xxxx 💖💖💖💖
Love you guys ❤️
Hope/pray all works out for your medication Shane.
Lots of love from Edinburgh 🏴 Scotland 💙💜💙💜xxx
I love y'all. Any situation y'all make light of. Positivity radiates from y'all!!! ❤️❤️❤️ From Arkansas!
love you guys!!! Wishing both of you all happiness and joy!
Had a shitty day. Came home to a Squirmy & Grubs video notification. Day saved. 👍 Wishing you guys the best of luck with everything!
Praying hard for you guys- the insurance/ medical hurdles that have to be jumped through can be RIDICULOUS!! Then if someone along the line takes their sweet time or drops the ball in the process....it’s infuriating!’ These are important matters! Ugh!! I find it odd and even sketchy that they don’t want you to talk to them beforehand!! It should be the absolute opposite! That in itself is angering in my opinion! Sending you prayers and love always-❤️❤️❤️🙏🏼 🤘🏼✌️
I have had a Lumbar Epidural Injection, something the insurance requires before even going into spinal surgery to fuse your lower spinal area, its' not guaranteed to work or even hit the right area, I don't know how pregnant woman do it, I screamed and had 4 nurses literally hold me down.
Hannah, you look great, your parents raised right, your mom, well lets say, I wish she could adopt me, Shane's sense of humor takes away from his disability, I get it, humor helps me forget any negativities in my own disabilities, when you can look passed the disability, the whole world is a more friendly place to be in
I always love your intros ..great work!!
Shane your humor is so awesome.
I LOVE your tips on the thumbnails and titles!! Much appreciated :)
I just love your sense of humor!
Fingers crossed that it will all work out for you Shane. Stay positive. Love you both ♥️
Awww... it is very scary.... I know you will both make a good decision!
Yes insurance now does suck thanks to "prior presidencies". SO many people are suffering because of this. I have worked in customer service for 30 years and have seen the changes and it was SO hard for me to try to convience the insured how their coverage will work for them. I pray for you Shane to be able to get the treatment you need AND get the coverage you dserve!!