After I picked Raelynn up from school, she had this seizure in the van on the way home. It was kind of a long/bad one, but she's doing fine now. She always bounces back! Get our newsletter: hopeandsunshine.tv/newsletter/
You are the greatest dad to raelean. You are so patient with her and we can always see the love you have for her. Keep up the good work and may God bless you.
@@HopeAndSunshine I'm a new subscriber here on your channel 🫶! Living with epilepsy is no fun I feel sorry for you, how severe epilepsy has your daughter?
@@HopeAndSunshine ama to end up getting the kids were so happy 😁😊😊 end of the year and the kids are in the morning and we will be excited to see 🙈🙈🙈 and we are going to work on the rest is
Raelynn is so strong and beautiful! You can put a bit of Vaseline on her lips so they don’t get too dry from her saliva and crack incase it may be painful to her 💜 God bless you both!
My first time to see you both, Rylan is a sweetheart and I know what she is going through, there is not enough credit given to the family's that care so well and full heartily care givers for all they do and take responsibility of, but God is good always and I hope he will Bless you all with the strenght and encouragement to go loving your child. 🙏🏻❤🌟
I pray these seizures will end for Raelynn. She is such a lovely child. My husband had epilepsy but not severe. It can be frightening for everyone. God bless. 💝
Very sweet kiss and smile. I hope Raelynn slept some after, must make her tired. I hope Raelynn enjoyed her summer school session, and hope she has nice mornings at home with you now, until the next session 💗🌞
@@HopeAndSunshine how many seizures does she have each day because I have a cousin from Alabama that has seizures and every day when she was little she had seizures and she didn’t know then when a seizure was about to happen to her and when she was at home in Alabama or when she came up to Indiana to see are family and she has family in Alabama she had the same thing and now since she’s older now and so am I she knows now when a seizure is about to happen to her and we can leave her by herself because we’re afraid she could have a seizure
@@HopeAndSunshine Thank you so much I appreciate it I will always have hope no matter what happens with my mom God will always provide have a good day love you all
So heartbreaking for a parent to witness because you can’t take that pain and stress away from your child. I’m on the other end, I have epilepsy and when I have grand mal seizures ( drop seizures) I often suffer injuries from hitting the ground or other objects. Obviously it’s taxing on my body, but I see the pain on my families faces and it really is heartbreaking
It looks somewhat difficult to crawl back to her when a seizure is about to start She smiled because she knew daddy was with her keeping her safe and for her to know daddy loves her: it’s amazing she’ll respond to that type of stimulation during them.
@@HopeAndSunshine you kind of feel helpless in that situation but all you can do as I’ve seen in the videos since I’ve been following is talking to her. Reassure her your not leaving her. Help her slowly come out as I’ve seen you do. I see her smile when your rubbing her head and kissing her. Does she always do that
Im glad shes ok cause ik feom personal experience that its easy to see your loved one having that but she's a fighter n will keep up the goos fivht rill the end
❤.i have 2boys my boys are 29&26 my baby was diagnosed with severe autism at 2..i have been a single mom from day one..its hard with no help..she is beautiful❤
Dear beautuful Raelynn glad it eased off. That was long one. Is that tongue action she does most of the time the infant tongue reflex? That's she's not lost? It looks very much like it doesn't it. She's adorable and beautiful always. I love your message of hope. And il be getting a t-shirt next week. Oh I loved when you sped up you talking for a sec that was funny. Luv to all the familly and boops from Binky
Yeah it's the same tongue reflex she's always had, but she stopped doing it for awhile. She started doing it a lot more again when she started taking cbd. It makes her more alert.
@@HopeAndSunshine I thought so. I remember my kids doing that. It almost looks like if you put a dummy there she would suck it. Not that I'm suggesting it. I find it interesting special needs children don't loose that reflex. Dusty mai is the same age still has it too.
I have epilepsy i understand sweetheart what u are going through i had spinal memnagities when i was a baby i have grand mal.seizures when im sleeping, bless you baby girl ❤
Oooo seizure in the car 🚗 it's awful. Victoria had many seizures in the car last year, thank God very few of them had convulsions, most of them partial. Because of these seizures, we bought a special car seat that could rotate almost 180 degrees so that I could turn it towards me when she's had a seizure, because there was not always a place for my husband to stop with the car. I love her, she's so sweet and strong. Hugs from us. 💜🤗😘
@@HopeAndSunshine This kind is the car seat. tediko.bg/chipolino-detsko-stolche-za-kola-rotiks-360-isofix-grupa-0-i-ii-iii-magla.html tediko.bg/media/catalog/product/cache/c534a44f0f405303a52851e36ca295e6/r/o/rotix_.jpg
Sweet Angel. Does she go to school half day or full day? She probably has a nurse with her while away from home. I use to teach preschool special Ed for close to 6 years & got very attached to the children. Parents were supportive & caring too.
As a person that has seizures I can relate and look like I'm shaking to death and happened at school today and my classmates just stare and me and 2 laughed stay strong and not be a bully (I am not the one who made this massage my friend did. sending love to everyone)
I understand what your going threw, I had the same thing when I was in school, it’s not your fault, ignore the bully’s, your more important ! Hope things get better for you, don’t forget to do your homework! Wear sunglasses during summer and when there are flashing lights or on your computer! God bless
Do sezuire meds not really help her? It breaks my heart seeing her like that but she has the best support and family by her side to help and take care of her.
Right, we've tried many, many meds, and some have helped for a short time, but nothing has ultimately helped. Her VNS helped the most, but its effectiveness has also decreased.
I am a person with seizures myself I am a successful and thankful to be living all because of CHRILDERN HOSPITAL of pittsburgs they saved my life my mother took me first to Indiana hospital they told her she was just a nervous reck mother
She has 2. Diastat is for seizures that aren't slowing down after 5 minutes. Clonazepam is for when she has 3 or more seizures in an hour (clusters of seizures).
@@HopeAndSunshine I'm glad you have rescue medicine that works, I can't get any because there are no neurologists in my area they are all too far away from me...that's why I use cannabis tincture. I might be able to have psychiatrist prescribe dissolving Klonopin for cluster seizures since he treats me for my Epilepsy already. I'm on 300mg of Dilantin and 100mg of Lamictal I have a lot less seizures but when triggered I have clusters if not treated I can have multiple seizures in a night. The most seizures I've had in a night was 50.
I’m curious, is there a way Raylynn can answer yes or no questions? Some sort of eye blink or small body movement that you may have worked out with her? Because I notice you ask her a lot of those kinds of questions. Do you expect an answer or are you just asking her rhetorically … in her case, to bring her a sense of comfort?
I mostly rhetorically, but her facial expressions also sometimes answer some questions, like if she's feeling ok (she has a content expression rather than a painful one, etc)
@@HopeAndSunshine Yes, more and more I notice that. It does seem like she wants to talk when she's moving her mouth and through some of her expressions. Actually, one of the more informative videos was the one your wife did when she was practicing her nursing evaluation skills. (A year ago?) I learned quite a bit about what some of Raelynn's challenges were. (You were both so good at play acting, I kept wondering if Raelynn was thinking, "What the heck are my parents' doing,...doesn't my mother already know what's going on with me?" Ha!
