Bedtime Routine for Medically Complex Daughter
Вставка
- Опубліковано 1 лис 2024
- Putting Raelynn to bed can take a few extra steps, but things are finally returning to normal for her now that she's recovered from Covid! In this video, I show just a few things we need to do
Get our newsletter: hopeandsunshin...
She is a beautiful child. Love her smile. Truly a blessing from God.
Yes she is ❤️
i have a friend who had a daughter just like raelynn she did the same thing you are doing she also had severe cerabral palsy raelynn is a beautiful girl just gorgeous
Thank you! God bless you!!
I think the problem was a few months back when the market
Such a beautiful soul. Absolutely love her night night Raelynn
Thanks!
Iqii80i9 I
Raelynn is beautiful.👌😊You're both AMAZING Parents.🙏💐
She's an amazing little girl. 🥰
@@HopeAndSunshine i love her so cute and a amazing human
You really are; it sure takes a lot of skill and heart to take care of someone special like Raelynn ❤️🙏🏻🥰👌🏻
@@HopeAndSunshine 💝💝
You're all so kind!
Good morning you guys!♥️ love the “snap trick!” Glad all is well!
Good morning! Thanks!
Raelynn’s shower time looks fun, love the ceiling panda! And panda curtain too, and towel warmer, so cozy. 😊 Aww, Raelynn shares Emily’s clothes sometimes? All Raelynn’s clothes and Pj’s are so cute. That’s neat how she gets food all night, hope she had a good night 🐼💤 There’s a lot to do, but it’s a beautiful bedtime vlog 🌝
I think everyone in the family has enjoyed the towel warmer! 🔥😁
@@HopeAndSunshine ,lllll
@@keylahbarr2857
. ..9
.
0
this is the first time I am watching your video. we are doing the same with my brother. I showed this to my mother and she just star crying. You are wonderful parents. I am sending you lots of love from Scotland.
Thanks so much! God bless you!!
@@HopeAndSunshine thank you so much
you are all amazing and im praying for you all , your doing an amazing job xxxx
Aw, thanks! You're so kind!!
Raelynn had COVID?! So relieved to hear that she’s better now 🥰
My heart goes out to all those people who aren’t able to get vaccinated 😔
Yeah, she made it through it like a champ!
My symptoms just like yours and hers have gotten worse.
August 7th 1:25-26 pm Eyeball and face tremor (partial paroxysmal neurological symptom)
August 12, 11:49-50 am I bruised while eating and my body stopped (nerve reaction)
On August 21st at 3:56-57 pm, watching UA-cam while having fun, cold sweats, bruises, and tension lasted for 30-40 seconds. (Nerve reaction)
I felt my symptoms.
Let's win by being friends with each other.
Hope you're feeling better.
@@HopeAndSunshine ok~ thanks~ This symptom was delivered from the neurologist and I'm taking medicine well.
So very touching she a very pretty girl i love pandas raelynn from wales uk🐼🐼🐼
Thank you for showing me this beautiful channel Lisa.😘💝
God bless you both!
@@sharoncarlisle7011 Thankyou for coming sharon she is a beautiful girl
@@HopeAndSunshine 💐💟
@@lisalovesallanimals 💝😘
Good morning Chris Abby and RaeLynn how are you all doing this beatiful morning i’m doing great I’m on my way to program have a great day I love you all god bless
We're doing well! Have a great day!
@@HopeAndSunshine You guys have a great day too I will talk to you either Friday or Monday
=
Good morning guys I am loving all of your videos
Good morning! Thanks!
@@HopeAndSunshine always
Good morning Sweet Ry 💜😘. You look more beautiful every day 🥰
Thanks!
what a sweet video :-) Glad she is feeling better :-) My daughter just tested positive 6 days ago she is vaccinated too, Thank Goodness.... she has heart and lung issues, so its a bit of a worry for me.... so far so good for her ... Take care and have a great day :-)
How old is your daughter? Raelynn is too young to get vaccinated in our state, but we're definitely open to getting if they change the rules.
@@HopeAndSunshine She is a grown up :-) 37 yrs old ... I never even considered Raelynn's age, even though I can obviously see she is not :-) ... now that my lame brain knows that, wow wow, wow !!! you guys did an amazing job getting her through it
Goodmorning sunshine have a good day
Good morning! You have a great day also!
@@HopeAndSunshine also One question so that metal thing that when she has a seizure that you rub against her chest what is that used for.
It's a magnet. It triggers her VNS (Vegas Nerve Stimulator) which helps her have less seizures.
@@HopeAndSunshine oh ok
Thankyou for sharing this with us 😆❤🙏
Thanks for watching!
How often do you have to bathe her?
A couple times a week at the very least. She can have bad B.O. 😂
Nothing nicer than clean sheets lovely ❤❤🙏
Definitely 😁
Sweet dreams girls sweet girl feel better
Thanks! She's feeling a lot better today.
Sweet girl ❤️ long day our ac stopped working last night but all fixed now! You haven’t been trying to sleep until like 5 am so we’ve been watching lots of UA-cam😂
No ac sounds horrible right now! Hope you get that fixed soon!
Hi Chris can you please give updated version of Raelynn Med and tell what new medication are for?
We will be at some point soon.
Turn your worries into worship then see how God will turn your battles into blessings God bless you 💗💗💗brave girl 💃
God bless you!
Hello good morning I am new and I really like watching your videos thank you for sharing.
Hi! Thanks for watching!
Good night sweet girl!
I don’t miss overnight feeds!
I know what you mean! Sometimes we'll forget to give her enough food to get through the night, and it will beep at us in the middle of the night. That's always fun 😂
@@HopeAndSunshineI had to do flashes every two hours during his feed. I’m so thankful he doesn’t have a GJ button anymore. He just has a G now with no night time feeds.
I’ve watched a few of your videos and wanted to say the first thing I saw was how much love surrounds your beautiful daughter. I have severe physical disabilities and noticed we have the exact same feeding pump! I can eat small amounts but am mostly tube fed. Sending love and best wishes to you all.
Thanks so much! Hope you're doing well!
Είναι άγχος κ στεναχώρια πολύ για τους γονείς να βλέπουν τα αγγελούδια τους να υποφέρουν!! Ο Θεός να σας δίνει δύναμη κ κουράγιο!!!!🙏🙏❤️❤️❤️😘😘
Thank you! God bless you!
Goodnight sweetheart ❤❤🙏
Rylenn is so beautiful and adorable 🥰
Thanks!
It's like a shower room! That's interesting
Yep. It was just a normal extra bedroom, but we had it converted into a large shower room for Raelynn. Worked out great!
So glad she got through the covid👍😄.
Me too! 😁
BOUNTIFUL BLESSINGS MY GRANDDAUGHTER HAS C/P I APPRECIATE YOUR SHARING IT IS 💕 🙏
God bless you and your granddaughter. 🙏
Your absolutely an amazing dad to her. You take such good care of her and love her and I’m sure she appreciates it. May I asked what is her condition?
She has epilepsy and cerebral palsy, among other things
Are you gonna do the treatments to keep her small? I hope that's not insensitive but I saw a documentary about parents with severely disabled children suppressing their growth so they're easier to manage. Not starving them but I think it was hormones or suppressing hormones to prevent them getting and longer and stop bone growth.
It's actually a side effect of hormones she takes to strengthen her bones. It's definitely controversial, though. But for Raelynn, it's necessary so that her spine remains strong after she had spine surgery
@@HopeAndSunshine I definitely think parents should be able to do what's best for their kids without being criticized. You guys are awesome parents...
Aww Sweet girl 💗🥰
Aw thanks!
@@HopeAndSunshine your welcome ❤️
She’s so beautiful
Thanks
Bless her heart
Thank you!
Hello my name is Jamie and I've been watching your videos for a while now. I admire how your giving the world awareness of a disability. I love how great you are with taking care of your family and raylynn . I wish your family nothing but the best and many blessings. I also have CP myself so i know the daily struggles.❤😊
Thank you! God bless you!!
She is really beutiful :) ❤
Thanks!
Good night pretty girl!
💤
i know you are great parent's..so just curious ..have you ever considered cbd treatment for her seizures?..
She takes CBD, but it doesn't help with her seizures
How come the sheets on the Raelynn's bed are over what looks like side rails? Raelynn is such a beautiful girl and you are great parents for her. I wish I had you as my workers
We used to have hospital-bed type siderails, but they were very rigid and got in the way. While Raelynn doesn't roll much, there's always a chance that she would fall out of bed during a seizure, especially if she was on her side. So we taped pool noodles on the edges of her mattress to create soft barriers.
Hi Chris has Raelynn have any seizure when you were giving med or get food and preparing her food And also if you have of video of Raelynn g tube?
Yes, sometimes she does. Yes, we have videos of her g tube.
Love you
Realynn i now you like panfas but do you like other animals ?
She doesn't really seem to care about animals much. She did like petting one of our cats recently. We think she likes pandas mostly because of the simple black and white colors. 🥰
@@HopeAndSunshine i love pandas to they so cute my favorite animal is a rat as i used to keep them as a pet am not keen on snakes
@@HopeAndSunshine nos da is good night in welsh
I love the name Raelynn
Thanks!
@@HopeAndSunshine no problem 🥰😍 you picked the perfect name😍❤️ God Bless Yall
We changed the spelling when we adopted her. It used to be Railynn. 😁
@@HopeAndSunshine either way her name is beautiful! By the way, I'm new to your channel and already love you guys
No word's to say parent's good job,I am also have a special child my daughter is cp child her diagnose (Argenine deficiency) what isyour daughter diagnose
She has quadriplegic cerebral palsy and epilepsy. Blessings to you!
@@HopeAndSunshine thanks for you sharing
Hi Chris I don’t what to type to find the g tube?
I found this one by typing "g tube" ua-cam.com/video/scLzDozuBEY/v-deo.html
Maybe she was hurting somewhere when is her surgery to fix her hip or whatever it was for I think that was it
It's at the end of October. ❤️
I love her shower bench, does she go to a lifeskill program..
No, all of her therapists come to our house now that school is starting back up.
Hi Chris Can you post some of g tube video if they private?
I won't be posting any private videos, but we have video of her g tube on UA-cam already. You'll just have to find them 😁
aw if rae rae can beat covid I will too! :) just a silly question doesnt she get cold from wet hair?
Nah, our house is always set to a comfortable temperature for her 24/7. 😁
When you adopted her?
When she was 5. She's 9 now 😁
How doing she surgery
She's doing well. She's had some pain lately, but her doctors are aware of it and her pain meds help
I have a question. Do you still have any merch left? I’m actually a nun and have a vow of poverty so I can’t buy a t shirt but I’d love one. I was going to ask my parents or one of my blood sisters to get me one for Christmas. I’ll wear it under my habit!!
Aw, you're so sweet! Yes, they are available on our website: sunshinebaby.tv
So is so cut
She's doing fine. 😁
Such a cutie
Thanks!
🙏🏼🙏🏼🙏🏼
Why whipping cream in her feed?
It changes the ratio of sugar and fat in her diet, which has been shown to often help many people with seizures
did she get tested positive for covid? good thing she's recovering by the way dis she get vaccinated
She hasn't been vaccinated, but that's because it wasn't available to her until recently. She had Covid a few months ago, so now she has antibodies from it.
@@HopeAndSunshine oh dear I'm praying for her always how old is she really i heard kids have to be 16 or older to vaccinated I'm only 15 years old
She's 9
@@HopeAndSunshine wow I'm 15
LOVEYOU❤❤❤💋
❤
❤🙏😘😍🌹
Don’t hurt her
I wouldn't dream of it. 👍
How similar our UA-cam channel names: Sunshine baby & Shining Stars
That's cool!
@@HopeAndSunshine I really like yours one
How old is Raelyn
She's 9 😁
@@HopeAndSunshine she's so beautiful what a god bless child tell her i love her
Is she still alive
Yes, she's doing fine
Has she ever had nourish?
Sorry, I'm not sure what you mean.
Hello
Hi!
Are you guys watching kung fu panda ?
I feel bad
Sorry to hear that. Hope you feel better soon.
I can't imagine not eating any solid food. 😢 having a feeding tube and formula as a meal 😢
Good evening
So Beautiful girl 💕
Thanks!
hi sunshine baby
Hi!
I 🥰 miss you
Ψυχούλα μου, γλυκιά!! Γιατί είναι βουρκωμενα τα ματάκια της, τι προσπαθεί να πει;💔😢
It's really difficult to know for sure. But we are thankful she can let us know when she's in pain or uncomfortable. ❤️
Assalamualaikum
Blessings to you
Hi
Hey there!
Is she intellectually affected by her cp or is it only physical?
We're not entirely sure, but it seems she's also intellectually affected. It's difficult to know how much because of her physical limitations
I got my vaccine and i,m medically disabled
Good! Hopefully it keeps you from getting Covid. ❤️
lol sisters stealing each others clothes thats normal lol. be worse if raelyn was typical kid they prob be fighting over them.
They get along pretty well ❤️
@@HopeAndSunshine that's good raelyn is a cutie
I have husband Jacob Harrison and care me every day he trying I have pain every time I was has seizure long time ago my name is carley harrison
Hope you're doing ok 🙏
Yasin kumpulan perempuan yang baik dan selamat sejahtera kepada semua pihak yang tidak boleh digunakan oleh pengundi hantu dari depan ni pasang kepok batu Nesan arwah ayah bagi anak-anak lepasan sekolah menengah kebangsaan agama Al-Irshad tak tahu nak buat kenduri kahwin di kebumikan mayat mangsa ditemui hari ini dan dalam masa yang sama juga dengan selambanya yang tidak boleh diterima pakai kn tudung bawal gaya Rozita Che lah yang paling baik untuk ambil tindakan tegas bukan sekadar menjadi pemerhati politik dan selamat sejahtera semua
Saya tidak memahami semua perkara itu 🤷♂️
Bedtime
How are your doing daughter doing about being friends with me
We're glad to have you watching! ❤️
Good morning raelynn how are you doing this beautiful morning I had just had surgery just now
We're doing fine. Hope surgery went well
Yes
I am recovering
Try topermate
I looked it up and it is an anticonvulsant. Raelynn has tried many anticonvulsants and they aren't effective for her.
Love you
Aw, thanks!