This is the first video I've watched on your channel and I it is AWESOME that you are Christians. I enjoy following the special needs channels, because I am a special needs adult. I also worked in a preschool program for kids with special needs. LOVE and PRAYERS ALWAYS from Gainesville Florida❤🙏😊🙏❤.
Awwy what special needs do u habe or dont wanna say i have exceptional children for my learning disabilities was seizures but also my speech im in there and to know fiction non fiction main idea details key details etc i dont know any still.
I commend u guys for all you do.♥️ Some would not commit to such routine. Me personally..This would be to stress inducing for me which triggers a lot of my challenges. However, I am a mother of 1. They are such blessings. God bless you guys!♥️
@@HopeAndSunshine I’m doing good I’m doing very well just got out of my class just having my break got my next class and then I’m headed home from program our family is doing great thank you Chris love you
We are going through a rough time and styles of work that are are used in your own ❤life well as your own business and will not be a problem signing up for it and I am very interested 😀 I am going out There was an error signing into my account and I was an error signing into account for a few months now that are
Have you guys ever discussed in a video why miss Raelynn gets so much excess oil on her face? I’ve never really heard or seen that happen to anyone else with the similar medical issues as Raelynn so for some reason I’m curious to know if there’s an actual reason behind it? You guys do such an amazing job at keeping her comfortable & looking so adorable!! She really is a a ray of sunshine! ☀️ so much love & good vibes sent your way from Long Beach, CA!
I think I've mentioned it in passing a couple times, but never talked about it a specific video. We're not completely sure why she gets so oily, but it's most likely a side effect of one of her meds. Thanks for the kind words!
To me it seemed as if she became upset right before the seizure took effect. I don't always know because I don't have a child to notice anything. For myself otherwise I get irritated before yet she was more like upset and maybe a panic. I don't know if she does have shift in moods or not but like I said to me it seemed that way for her. I don't remember asking but how many different type of medication that she has. Epilepsy Muscle relaxant Gi medication Idk I have done forgot lol I'm glad the seizures looked small and better compared to before. She was smiling so much and it made me smile also. I want my cholesterol medication to hurry up . God bless and I hope that this week will be a good week. Love the family 💖💯😎💜
I think she's on meds for like 7 different issues: epilepsy, muscle relaxant, allergies, sialorrhea (excessive drool), general mood, heartburn, and bone strengthening. I could be leaving something out because I'm going by memory 😁
Hi there I have a watched all you videos of your amazing family. Just one question if you don't mind, why do some of Raylens medications go on her J tube and some into her GJ tube? Thank you for your great educational content?
@@HopeAndSunshine I didn’t realize that CBD is better absorbed in the stomach. Jonathan takes Epidiolex as well. He throws up a lot, so we’ve been giving it through the J port. Thanks for the info.
Jonathan also has a VNS. Do you feel like it helps her type? Jonathan’s are very short Tonic seizures so it’s hard to get to him with the magnet in time.
Swiping the magnet manually often helps to keep smaller seizures away for her, yes, as long as we catch them early and swipe often. But the bigger help has just been the regular stimulation she gets from the VNS. She went from having 5-8 tonic clonic seizures per day to 2-4 per day. And whenever it gets turned off accidently, it goes right back up to around 8 per day until it's adjusted. So we know it's working for her. ❤️
Stay healthy little baby girl I hope that your family gets you better and I hope you go back to church okay so stay that a big girl I know you're tired for you honey okay I know everything is hard for you and everything will get better okay with all the love you get from all of us we love you okay I love you little girl I love you so much you my baby girl be a big girl for your family like you do for all of us okay love you love Ashley
When I started watching this video , my cat jumped on the bed and started watching , she was transfixed on the screen everytime rayelnn was on & she kept trying to lick the screen (I think she was trying to give her kisses!!)❌⭕❌⭕ So plz let raelynn know she now has a "furry purrrry" #1 fan 😍
How is she doing I have epilespy myself and I've not really found that much medication dose she have any seizure free days I followed your videos on UA-cam I watched them all of the time I part for her 🙏🙏
Maybe she feels that she’s going to have some seizures before they actually happen, so maybe she was trying to tell you with those noises when Abby was trying to tell if she was happy or not
This reminded me of another channel called see the seitz had to double check you jsve a beautiful daughter. New here any more children. Beautiful family
Not very often at this point. It's hard to tweak meds when she's been having so many other changes going on (VNS, surgeries, antibiotics, etc) because we wouldn't be able to know what made the difference. Also, meds haven't shown to help her much, so statistically it's not likely any others that we try would. Her VNS has been most promising.
Poor girl to have horrible health issues. If she is having daily seizures even being on seizure medications then how come they don’t try another medication to relieve her symptoms? She seems to have a few a day every day. It’s heartbreaking to see her suffer like that. It has to be scary for her. She is such a beautiful little girl. Life just isn’t fair. 😢
We have tried many medications, and continue to try various things. Medications just aren't effective for her, and the likelihood that medication would be effective is very low at this point. The best thing for her has been her vns, and we continue to experiment with different settings to see what's most effective.
I feel so bad for her. It’s clear that you do take real good care of her. She is a happy girl for the most part. It’s just heartbreaking. I wish her well. Your wonderful parents 😊
Never shake a person when they are about to having a stroke or seizure because it well make there symptoms and when my husband has seizures on his back to help him
Just a question ,Why does your daughter have seisures if she takes medication for them ? My best wisnes to you both for the beautiful care you give your girl
@@HopeAndSunshinewe are going on vacation and we will not have a few more days until I can get back in town and get a few more of them in a couple weeks ❤❤❤❤❤❤
i have a friend that is the way they did Makayla the exact same thing but she had passed away babygirs was her nickname raelynn is a beautiful girl there page is called Our Lives, Our Reasons, Our Sanity you may have to go down till you see 3 years i like the one morning routine i love them all i saw all of them from the start
May God Bless This Family.Thank You Lord Jesus Christ For You Are The Greatest Gift To The Whole World. From Genesis To Revelation Is God Love And Promises.Jesus Christ Is Love Always Amen And God Loves All His Children.Keep The Faith And Keep On Praying Never Stop Praying.
That’s good 👍 she’s doing ok 👌 I pray 🙏 for all specail needs kids and adults like 👍 us with any disablity s are s are not really bad. My kids are alittle slower than mom and dad my kids are faith and Blake hanes mines tammy hanes my husbands clearence
By looking a sore core on her face and i get rid of my cold I had to change my drink of juice that made me broken out in cold sores and I didn't buy anymore orange juice or regular oranges because I would broke out so fast and now I don't have any more cold sores now so you know Thanks
Yes, she gets CBD oil. She originally started getting it to help with seizures, but we found that it mostly helps with her general mood. The meds that were near her bladder went into the G-port (to her stomach).
Well that’s rude of you! What do you mean let her go??? She deserves to live and be alive just like anyone else!!! Only God will decide when it’s time for her to go. Now is not her time.
If you like the music today, check out my cousin's band, Goldberry! They're great! www.goldberryband.com/our-music/
My nephews Alex suffer from epilepsy
@@annekalunn8567 I do too
Жаль вас и вашего ребенка
А вдруг будут улучшения
Дай бог
God praying for your daughter to be seizures free and my best friend
Aw, Latoya, you're so sweet!
I work with children with complex care takes a special person .. you guys are amazing....
Thanks! And thank you for your work!!
Raelynn looks so sweet and peaceful. Hope she gets well soon😊
Thanks. She's doing better now
Have a nice day to all of you guys. I think the shaker vest is such a fun ride!
Raelynn likes it! 😁
God praying for everyone and your baby girl 👧🏼and she looks beautiful today.
Thanks!
This is the first video I've watched on your channel and I it is AWESOME that you are Christians. I enjoy following the special needs channels, because I am a special needs adult. I also worked in a preschool program for kids with special needs. LOVE and PRAYERS ALWAYS from Gainesville Florida❤🙏😊🙏❤.
Thanks for watching! God bless you!
Awwy what special needs do u habe or dont wanna say i have exceptional children for my learning disabilities was seizures but also my speech im in there and to know fiction non fiction main idea details key details etc i dont know any still.
@@HopeAndSunshine God Bless
WHY WOULD SOMEONE DISLIKE THIS VIDEO your daughter is amazing I would never do that if I was that person
Thanks!
Maybe just like a sad face on fb. There are such limited options on youtube-
Βλέπω τις αντιδράσεις της άρα, καταλαβαίνει τα πάντα κ φυσικά την αγάπη σας!!❤️❤️🙏🙏
I commend u guys for all you do.♥️ Some would not commit to such routine. Me personally..This would be to stress inducing for me which triggers a lot of my challenges. However, I am a mother of 1. They are such blessings. God bless you guys!♥️
Just part of daily life for us. God bless you!
WOW! Raelynn looks beautiful in her dress! :) Accidents happens!
Yes, they sure do sometimes
Raelynn your a sweet girl. Very pretty dress you had on. Bless you and your family.
Thank you! God bless you!
Good morning RaeLynn how are you today I’m doing. Well good morning Chris and Abby my prayers Go out to you and your family God bless
Good morning! We're doing well, thanks. How are you?
@@HopeAndSunshine I’m doing good I’m doing very well just got out of my class just having my break got my next class and then I’m headed home from program our family is doing great thank you Chris love you
@@HopeAndSunshine I’m doing well thank you for asking I’m just hanging out right now
We are going through a rough time and styles of work that are are used in your own ❤life well as your own business and will not be a problem signing up for it and I am very interested 😀 I am going out
There was an error signing into my account and I was an error signing into account for a few months now that are
Beautiful
Thanks so much!
Good morning. Hugs. You look super pretty
Good morning! Yes she does 😊
@@HopeAndSunshine aww np
Θα προσεύχομαι για αυτό το παιδί!! Την αγάπησα με που την είδα!!! Άγγελε μου, κουκλίτσα μου, η Παναγία να σε κρατάει σφιχτά αγκαλίτσα!!!🙏🙏❤️❤️❤️🇬🇷
Ο Θεός να σε ευλογεί! 🙏
awww bless shes beautiful x
Thanks!
Have you guys ever discussed in a video why miss Raelynn gets so much excess oil on her face? I’ve never really heard or seen that happen to anyone else with the similar medical issues as Raelynn so for some reason I’m curious to know if there’s an actual reason behind it? You guys do such an amazing job at keeping her comfortable & looking so adorable!! She really is a a ray of sunshine! ☀️ so much love & good vibes sent your way from Long Beach, CA!
I think I've mentioned it in passing a couple times, but never talked about it a specific video. We're not completely sure why she gets so oily, but it's most likely a side effect of one of her meds. Thanks for the kind words!
@@HopeAndSunshine❤
Awesome, have an awesome day sweetheart.
You too!
To me it seemed as if she became upset right before the seizure took effect. I don't always know because I don't have a child to notice anything. For myself otherwise I get irritated before yet she was more like upset and maybe a panic. I don't know if she does have shift in moods or not but like I said to me it seemed that way for her.
I don't remember asking but how many different type of medication that she has.
Epilepsy
Muscle relaxant
Gi medication
Idk I have done forgot lol
I'm glad the seizures looked small and better compared to before.
She was smiling so much and it made me smile also.
I want my cholesterol medication to hurry up .
God bless and I hope that this week will be a good week.
Love the family 💖💯😎💜
I think she's on meds for like 7 different issues: epilepsy, muscle relaxant, allergies, sialorrhea (excessive drool), general mood, heartburn, and bone strengthening. I could be leaving something out because I'm going by memory 😁
@@HopeAndSunshine lol
I hate when raylan has seizures Its sad But anyways goodmorning have a good day
Good morning! Have a great day!
Hi there I have a watched all you videos of your amazing family. Just one question if you don't mind, why do some of Raylens medications go on her J tube and some into her GJ tube? Thank you for your great educational content?
Great question! It's about how they're absorbed. Her omeprazole and CBD oil are better absorbed in her stomach rather than her small intestines.
Oh right ok thank you can't wait for the next video
@@HopeAndSunshine I didn’t realize that CBD is better absorbed in the stomach. Jonathan takes Epidiolex as well. He throws up a lot, so we’ve been giving it through the J port. Thanks for the info.
@@emmacartledge4778❤
Hope she feels better soon 😕
She's doing good 👍
Jonathan also has a VNS. Do you feel like it helps her type? Jonathan’s are very short Tonic seizures so it’s hard to get to him with the magnet in time.
Swiping the magnet manually often helps to keep smaller seizures away for her, yes, as long as we catch them early and swipe often. But the bigger help has just been the regular stimulation she gets from the VNS. She went from having 5-8 tonic clonic seizures per day to 2-4 per day. And whenever it gets turned off accidently, it goes right back up to around 8 per day until it's adjusted. So we know it's working for her. ❤️
@@HopeAndSunshine Same here. I think the regular stimulation is why he was able to half his doses of medication.
Aww the poor girl 😔 I hope she feels better 😁💞💞💞💞
Thanks! She's doing well so far today. 😁
Chris Huff your daughter is so sweet
Stay healthy little baby girl I hope that your family gets you better and I hope you go back to church okay so stay that a big girl I know you're tired for you honey okay I know everything is hard for you and everything will get better okay with all the love you get from all of us we love you okay I love you little girl I love you so much you my baby girl be a big girl for your family like you do for all of us okay love you love Ashley
She's doing well today! Thanks!
Sometimes I enjoy a lazy afternoons And sometimes I like to be going out to the stores and doing a little shopping
I definitely enjoy a good lazy afternoon 😁
@@HopeAndSunshine That’s great I’m glad you enjoyed that I like a lazy Sunday afternoon sometime just watch the Brady Bunch and rest
Also, that sounds more like a herpetic lesion (cold sore) if it recurs periodically. 💕
Either way, the Mupirocin clears it up. 🤷♂️
@@HopeAndSunshine Yes, I didn't mean for it to sound like I thought anybody was doing anything wrong! Just talking shop!
So contagious
When I started watching this video , my cat jumped on the bed and started watching , she was transfixed on the screen everytime rayelnn was on & she kept trying to lick the screen (I think she was trying to give her kisses!!)❌⭕❌⭕
So plz let raelynn know she now has a "furry purrrry" #1 fan 😍
Haha will do!
How is she doing I have epilespy myself and I've not really found that much medication dose she have any seizure free days I followed your videos on UA-cam I watched them all of the time I part for her 🙏🙏
She's doing pretty good today so far. She does have a seizure free day once in awhile, but it's rare. Thanks for watching! God bless you!
Maybe she feels that she’s going to have some seizures before they actually happen, so maybe she was trying to tell you with those noises when Abby was trying to tell if she was happy or not
Daddy you are so good with her
This reminded me of another channel called see the seitz had to double check you jsve a beautiful daughter. New here any more children. Beautiful family
Yes we have three other kids too. 😁 They pop into this channel once in awhile, but more on our second channel: ua-cam.com/users/smalltownfamily
@@HopeAndSunshine thanks for that you must be busy. Having four kids xoxxo love from Australia
They keep us busy! 🤣
@@HopeAndSunshine lol I bet xoxox
I feel sorry that she has them seizures but she bounces back from it
Yes she does, she's strong! 💪
She's a beautiful girl
How often do you end up changing raelynns meds to try and control her seizures.
Not very often at this point. It's hard to tweak meds when she's been having so many other changes going on (VNS, surgeries, antibiotics, etc) because we wouldn't be able to know what made the difference. Also, meds haven't shown to help her much, so statistically it's not likely any others that we try would. Her VNS has been most promising.
Omgoodness poor sweet girl
She always bounces back 💪
Bless her #raelynnseizures 🧡
Poor girl to have horrible health issues. If she is having daily seizures even being on seizure medications then how come they don’t try another medication to relieve her symptoms? She seems to have a few a day every day. It’s heartbreaking to see her suffer like that. It has to be scary for her. She is such a beautiful little girl. Life just isn’t fair. 😢
We have tried many medications, and continue to try various things. Medications just aren't effective for her, and the likelihood that medication would be effective is very low at this point. The best thing for her has been her vns, and we continue to experiment with different settings to see what's most effective.
I feel so bad for her. It’s clear that you do take real good care of her. She is a happy girl for the most part. It’s just heartbreaking. I wish her well. Your wonderful parents 😊
She is very well loved 🥰
Love you somuch miss
Thanks!!
Cute church outfit 🥰
Thanks!
Never shake a person when they are about to having a stroke or seizure because it well make there symptoms and when my husband has seizures on his back to help him
What does she have??
She has epilepsy and quadriplegic cerebral palsy, among other things
Χαμόγελα μου, λίγο ψυχούλα μου!!!❤️❤️❤️❤️
What is the breathing mask for with shaking fing
Fing ?
They help her to clear any mucus out of her lungs and airway so that she breathes better.
Every day say the blood of Jesus because it covers you and bless your family daughter or son
❤❤❤❤❤❤❤❤❤❤❤love you
Just a question ,Why does your daughter have seisures if she takes medication for them ? My best wisnes to you both for the beautiful care you give your girl
Medication isn't effective in eliminating everyone's seizures. But medication can still be helpful to reduce their frequency and severity.
How long is her post ictal period typically?
Sometimes very short, just a couple minutes. But sometimes she can be in a "funk" for several hours after a tonic clonic seizure
@@HopeAndSunshinewe are going on vacation and we will not have a few more days until I can get back in town and get a few more of them in a couple weeks ❤❤❤❤❤❤
Whats her meds for
Seizures, muscle relaxant, and allergies, among other things ❤️
Our daughter had her first seizure since surgery today ❤️
Wow, so how long was that?
3-4 weeks we think which is good her Neurologist said but we definitely have to keep an extra eye on her for the next few days
@@afappiano7115 Wow, sounds like surgery was extremely successful! That's great! Praying you continue to see good results.
Thx❤️ she’s acting like nothing happened so ❤️
@@afappiano7115 it should end soon i got Surgery and it completely stopped mine
I can’t even stand this . I don’t like to see kids going though any difficulties. It hurt me so much . Wish you the best pretty 😍
Fortunately she's having far less seizures now thanks to her VNS
What does the shaker vest do for her
It breaks up any kind of mucus in her lungs and airway so that she can cough it up easier
you are super hero father lots of love from Pakistan
Thanks ❤️
i have a friend that is the way they did Makayla the exact same thing but she had passed away babygirs was her nickname raelynn is a beautiful girl there page is called Our Lives, Our Reasons, Our Sanity you may have to go down till you see 3 years i like the one morning routine i love them all i saw all of them from the start
Sorry to hear your friend passed away
🙏🙏🙏🙏
May God Bless This Family.Thank You Lord Jesus Christ For You Are The Greatest Gift To The Whole World.
From Genesis To Revelation Is God Love And Promises.Jesus Christ Is Love Always Amen And God Loves
All His Children.Keep The Faith And Keep On Praying Never Stop Praying.
Did Raelynn ever use the A Wheelchair lift?
Is that a specific brand? We've used lifts at some places, but we don't have one.
❤😊😊❤
Can she eat regular foods
Only liquids in very small amounts (just a taste)
❤️❤️❤️❤️🙏
😢❤ is she still doing good 😊
She still has seizures everyday, but yes, she's doing ok
That’s good 👍 she’s doing ok 👌 I pray 🙏 for all specail needs kids and adults like 👍 us with any disablity s are s are not really bad. My kids are alittle slower than mom and dad my kids are faith and Blake hanes mines tammy hanes my husbands clearence
LA MAMÁ ES LA IDEAL PARA CUIDARLA!!!!
By looking a sore core on her face and i get rid of my cold I had to change my drink of juice that made me broken out in cold sores and I didn't buy anymore orange juice or regular oranges because I would broke out so fast and now I don't have any more cold sores now so you know
Thanks
Raylen beauitful
Can raelynn talk?
No, but we're hoping that she might be able to communicate with an eye gaze device.
@@HopeAndSunshine was raeylnn born like how she is now?
Yes, she was born this way.
It might be cold sores on her lip and you can get stuff for cold sores from your Dr
I believe it was impetigo
❤❤❤😊
does raelynn ever laugh
Yes, but it's rare.
@@HopeAndSunshine thanks for answering me
Does Reylin Ever get headaches from having seizures?
It's impossible to know, but it doesn't seem like it
Friday afternoon is good
Definitely 😁
@@HopeAndSunshine😂😂😂😂😂😂
Hi Raelynn
Does raelynn have asthma
No, I don't think she's ever been given that diagnosis.
Watching this I too have impetigo on my forehead and on the same cream.
It helps Raelynn. Does it clear yours up?
@@HopeAndSunshine yes it has helped clean it up
Why does one medicine go near her bladder and what did u give her CBD oil or what
Yes, she gets CBD oil. She originally started getting it to help with seizures, but we found that it mostly helps with her general mood. The meds that were near her bladder went into the G-port (to her stomach).
That's her muscles are loose some of my friends muscles are tight and can't move
Have they tried medication?
😅😅😅😅😅😅
🙏🇹🇭👍👏❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤❤
Mupirocin pronounced
mew-peer-ocin
Thanks!
Your comments are turned off In your new video
Thanks for letting me know! They should be back on now.
@@HopeAndSunshine ok I commented on new video
Niech zawsze słoneczko jej świeci ❤❤❤❤
Thank you
Gee, that is no life for her or you. Stop torturing her. Let her go.
How do you suggest we "let her go" exactly?
Well that’s rude of you! What do you mean let her go??? She deserves to live and be alive just like anyone else!!! Only God will decide when it’s time for her to go. Now is not her time.
@@Lillysaidthat1 Sometime it is for the best for all involved.
does raelynn ever laugh
Yes, sometimes. But it's rare.