I've said this before and I'll say it again, you are just as special as your daughter is, you were hand picked for her too, not everyone can do what special needs parents can, your endurance, strength and sincerity is very admirable. Your daughter is the warrior and you're her Lady in shining armor, protecting her, shielding her and endlessly fighting for her!
The eye gaze/to I eye gaze with sounds for everything seems to be the best thing to communicate the most things that are needed.If it can be positioned close for here and brightly lit, I don't know its limitations.
Your birth story is so much like mine, my daughter just turned five and Elin and her look very similar. My daughter has HIE, CP, and a vision impairment. We just got a tobi dynovox to try out and she seems to really like to use it. :) Thank you for sharing your story.
That's great that you so know so much about her condition! I enjoyed watching! I feel like we know so little about our daughter's condition. She has several diagnoses, but we don't really know the cause of them. We think it's probably due to a genetic mutation (the NAV-2 gene), but we really don't know for sure. Raelynn also liked the fart game on the Tobii Dynavox she was able to borrow! We're currently trying a WinSlate eye gaze. Hopefully she can get her own to keep soon! How does Elin play on her iPad?
That is tough not knowing. I mean, it is tough knowing too, and always wondering if I could have done something different but I do know and I am relatively at peace with it. Have you had her checked for genetic stuff? I need to make a note of those eye gaze things, thankfully I have started Elin's journal!!! She has some games that make noises by touch, it doesn't matter where on the screen. And Alice often plays with her. There is a shark song, no not THAT shark song, that they both enjoy.
@@ParentXP LOL @ "not THAT shark song"! Yes, we had her genetic testing, that how we found out about the NAV-2 gene mutation. But it's so rare that they only know of one other person who has that same mutation. They said that the other person has a condition very similar to Raelynn's, so it could be the cause, but it's not conclusive.
Hi you mentioned non epileptic seizures have you heard about this also been called FND its just a question as I had never heard of it until my son got very sick and started having seizures .
Hi beautifuls.!...I have missed you all!...been so busy...my story of my daughters birth is very much the same other than the c section....it’s all so sad isn’t it!...I sometimes think back on everything and it’s all such a fog of running to the hospitals so many years of it...still there 18 years later...it takes extreme strength to be a parent to a child with disabilities as these...we need each other at times...and especially to give a pat on the back for the excellent work you do...I’m tired as going on 60... try and enjoy what you can...the stress will eat your body as it has with me...but these beauties are worth it...it sucks being trapped in their little innocent bodies I’m sure of...take it easy my love...I don’t know who is sweeter?...yours or mine!..ha ha!...she’s a darlin for sure!..god bless!😘😘💕💕💕💖💖💖
Haha, well, obviously mine is sweeter 😂.Actually, she can be a right brat at times 😂😂. But it's nice to see you here again 💕 It does take extreme strength, both mental and physical, good thing we're game for it!
@@ParentXP your doing a great job!...my daughter can be a little monkey at times also...just the other day she got her period and she was flipping out and almost flew out of her chair at me!...she is a teenager...I felt sorry for her and said to my son...can only imagine what she would be like if she could tell me off and the stress of telling her when to come home at night!..ha ha!...she has a lot of the Irish red head jeans in her also!💝💝😍😍🤣🤣🤪🤪
@@colleencleland3788 oh my goodness. I think having a period makes that understandable 😅. I was asked, in a podcast I took part in, what is the worst thing about being a woman. I replied "periods" without missing a beat. I'm rather looking forward to menopause, though I think I have another 10 years to go, unfortunately 🤣
@@ParentXP what!!...I use to think the same about my period!...good lord don’t you dare wish menopause!...it sucks!..I had to go on hormone therapy which I did not want to...but the sweating and profusely I might add...not just hot flashes...and so irritable...I would of killed someone by now I felt!...ha ha!..not everyone of coarse is the same...but honestly I wish my period back sometimes...we just cant win us woman...it’s not fair!...🤪🤪🤪🤪🥂
Thank you very much for this video. I found it so interesting to here your, you and Elin’s, story. She is a delightful little girl and cheeky to. How are your arms doing? Cranial osteopathy might be helpful for her. It might be worth visiting one with her to see what they say.
Hi Tova! Great video! Elin is just absolutely adorable! 😊 I do have a few questions for you, so let’s get started! Why did your doctor allow you to go 10 days over due? If he/she wouldn’t have do you believe Elin would’ve been born without any disabilities? Do you feel that the doctor is responsible for her disabilities? If so have you tried to take any legal action? As far as her bathing goes I’m assuming she requires a special seat/sling? Does she have hand splints to open up her hands a bit? If not you can roll up a wash cloth and stick it in between her palms and fingers! I’m a COTA (Certified Occupational Therapy Assistant) and we do use the wash cloths during treatment sessions on patients that have hypertonia.
Oh, that was a lot of questions. They allow you to go 14 days overdue if there are no signs of complications. I had a membrane sweep in an attempt to get things started but, well... I have not taken legal action, I don't really feel there was medical negligence, plus that is a whole can of worms that I, for my mental health's sake, don't wish to open. She has a special bath seat where she lives, i.e. her dad's place. One of those seats that is a lift and can be lowered into the water. At mine I can't even get her into my bathroom without carrying her. We had some soft hand splints for her when she was very little but they didn't do much. We have discussed hand splints with her OT but not seen anything there yet (thanks for the reminder to chase). I like the idea with the wash cloths, so thank you!
@@ParentXP sorry for all of the questions, I never knew what happened with Elin and while I was watching your video my curiosity hit the roof! Thank you for answering my questions, I really appreciate it! ♥️ You are welcome for the washcloth idea! All you need to do is fold the wash clothe long-ways then just roll it up! Hope that helps until she can get some splints! 😊
@@ParentXP Hi hun, you and your little girl are just precious and very lucky to have each other and I hope the very best for you both. I am sorry to ask again but why do you believe that Elin wouldn’t be entitled to legal action for what happened because although it maybe safe to go above your due date ... this applies only if the you were both not in any risk.. like you said you had 7 scans because of your medical condition therefore you were not never like any other healthy mum.. you were on the hospitals radar as being of risk. I completely understand for your mental health you don’t want to think about this or do anything about it but ultimately this would be a of benefit to her because this will enable both of you to get help with care, equipment, specialist speech and language and accommodation. Children who have suffered brain injury are entitled to free legal representation but you must start this process sooner rather than later as it takes years.. the good thing is you will only have to make a statement about what happened during your pregnancy and birth and all the rest the lawyers handle and keep you updated so no daily involvement or queries from you and no disruption to your life as it stands. I think you and her father should really consider this I say this because as I’m sure you know nhs services are stretched and having paid for private intervention would be great for her and you. I hope I haven’t overstepped off forced my opinion on you but rather just shared my opinions with you.
Could she use a Tobii Dynavox assistance app on a tablet. I used to follow an account on IG called @lifewithelliegirl and Rebecca’s daughter Ellie used one of these tablets and was such a chatterbox once she started using it. (Ellie has CP amongst other things)
Your daughter is so beautiful! I am myself have mild cerebral palsy in my both legs and I'm profound deaf since birth. I am 52 yrs old living alone and I have an aide to help me clean my apt cuz I also have lower back/hips/pelvis pain issues that I not be able to standing long period of time that made my lower back so much pain and cramping. How old is your daughter and when is her birthday? I would love to give her special Christmas and birthday every year. May I have permission to have your home address please?
Hi Christine, hope you're doing well. Having some help sounds like a good idea. Elin is 8, she turns 9 in August. I don't give out my home address but have on my to-do list to change my PO box to being able to receive mail.
Hi, no she hasn't. Is there anything specific that makes you think this? And with regards to speech and language, yes she does, and this is why we have the head button. But unfortunately things are a little slow on the SALT front, I have too many other battles to fight first.
I understand! x Her facial features do indicate strongly to me that she may have a chromosome abnormality (my child has one) A geneticist is the person to get a microarray (simple blood test) performed. In my opinion, it’s worth finding out. PS Elin is adorable! I love her sense of humour!
Good to know, thank you. I honestly never thought beyond the brain injuries, and they are so extensive anyway that they explain pretty much everything. But I will bear this in mind.
I know she does. We have tested by asking the same questions in English and Swedish and she responds consistently. She has an instant reaction to hearing Swedish and she reacts differently to hearing a native vs a non-native Swedish speaker. For example, her teacher tried to sing in Swedish and Elin was in hysterics every time because she knew it wasn't quite right.
I’m a primary special needs teacher in special school. I know lots of the different communication aids available. Let me know if you’d like to email me. G x
I've said this before and I'll say it again, you are just as special as your daughter is, you were hand picked for her too, not everyone can do what special needs parents can, your endurance, strength and sincerity is very admirable. Your daughter is the warrior and you're her Lady in shining armor, protecting her, shielding her and endlessly fighting for her!
Thank you. She is a warrior, for sure! Gets it from her mama 😉
I love how she’s smiling and laughing when you said she was a rough baby, almost like yeah I was. It’s a great blog and love learning more about elin.
She's one cheeky little girl, isn't she? 😂
@@ParentXP certainly is lol and she knows it.
Dear Tova, thank you for your sharing. I pray for Elin and your family. You are so brave for taking good care of her and Alice together.
Thank you Queenie. It's weird to think I was pregnant with Elin when I was in Hong Kong (I still remember your family dinner with absolute joy!)
I have Cp too!! Elin has such a sweet smile 😍😘💚
Hi Ashley, thank you 😊
She so lucky to have a handy mom like you x
The eye gaze/to I eye gaze with sounds for everything seems to be the best thing to communicate the most things that are needed.If it can be positioned close for here and brightly lit, I don't know its limitations.
It's something we need to try, for sure.
Your birth story is so much like mine, my daughter just turned five and Elin and her look very similar. My daughter has HIE, CP, and a vision impairment. We just got a tobi dynovox to try out and she seems to really like to use it. :) Thank you for sharing your story.
That's one I want to try too. Right now she's working with a head switch, doing really well.
I love her hair like that 😍
Thank you.
Aww, that was a very sweet vlog you did Tova and Elin, well done. Have a Happy Mother's Day tomorrow.💋💋💋💋🌷🌷🌷🌷⚘⚘⚘⚘
Thank you!
@@ParentXP
You're welcome.❤❤❤❤❤❤❤❤
Great blog, bravo!! ❤
Thank you Sally 🤗
2:55 emergency c-section I’m so sorry that had to happen
Thank you
That's great that you so know so much about her condition! I enjoyed watching!
I feel like we know so little about our daughter's condition. She has several diagnoses, but we don't really know the cause of them. We think it's probably due to a genetic mutation (the NAV-2 gene), but we really don't know for sure.
Raelynn also liked the fart game on the Tobii Dynavox she was able to borrow! We're currently trying a WinSlate eye gaze. Hopefully she can get her own to keep soon!
How does Elin play on her iPad?
That is tough not knowing. I mean, it is tough knowing too, and always wondering if I could have done something different but I do know and I am relatively at peace with it. Have you had her checked for genetic stuff?
I need to make a note of those eye gaze things, thankfully I have started Elin's journal!!!
She has some games that make noises by touch, it doesn't matter where on the screen. And Alice often plays with her. There is a shark song, no not THAT shark song, that they both enjoy.
@@ParentXP LOL @ "not THAT shark song"!
Yes, we had her genetic testing, that how we found out about the NAV-2 gene mutation. But it's so rare that they only know of one other person who has that same mutation. They said that the other person has a condition very similar to Raelynn's, so it could be the cause, but it's not conclusive.
Hi you mentioned non epileptic seizures have you heard about this also been called FND its just a question as I had never heard of it until my son got very sick and started having seizures .
Realy great explanitory video!
Thanks! 😊
Hi beautifuls.!...I have missed you all!...been so busy...my story of my daughters birth is very much the same other than the c section....it’s all so sad isn’t it!...I sometimes think back on everything and it’s all such a fog of running to the hospitals so many years of it...still there 18 years later...it takes extreme strength to be a parent to a child with disabilities as these...we need each other at times...and especially to give a pat on the back for the excellent work you do...I’m tired as going on 60... try and enjoy what you can...the stress will eat your body as it has with me...but these beauties are worth it...it sucks being trapped in their little innocent bodies I’m sure of...take it easy my love...I don’t know who is sweeter?...yours or mine!..ha ha!...she’s a darlin for sure!..god bless!😘😘💕💕💕💖💖💖
Haha, well, obviously mine is sweeter 😂.Actually, she can be a right brat at times 😂😂. But it's nice to see you here again 💕
It does take extreme strength, both mental and physical, good thing we're game for it!
@@ParentXP your doing a great job!...my daughter can be a little monkey at times also...just the other day she got her period and she was flipping out and almost flew out of her chair at me!...she is a teenager...I felt sorry for her and said to my son...can only imagine what she would be like if she could tell me off and the stress of telling her when to come home at night!..ha ha!...she has a lot of the Irish red head jeans in her also!💝💝😍😍🤣🤣🤪🤪
@@colleencleland3788 oh my goodness. I think having a period makes that understandable 😅. I was asked, in a podcast I took part in, what is the worst thing about being a woman. I replied "periods" without missing a beat. I'm rather looking forward to menopause, though I think I have another 10 years to go, unfortunately 🤣
@@ParentXP what!!...I use to think the same about my period!...good lord don’t you dare wish menopause!...it sucks!..I had to go on hormone therapy which I did not want to...but the sweating and profusely I might add...not just hot flashes...and so irritable...I would of killed someone by now I felt!...ha ha!..not everyone of coarse is the same...but honestly I wish my period back sometimes...we just cant win us woman...it’s not fair!...🤪🤪🤪🤪🥂
So sorry that they let you go to 10 days overdue. Elin is a very beautiful girl, and you are an awesome mother.
Thank you very much for this video. I found it so interesting to here your, you and Elin’s, story. She is a delightful little girl and cheeky to. How are your arms doing? Cranial osteopathy might be helpful for her. It might be worth visiting one with her to see what they say.
I've been thinking about cranial osteopathy, and actual normal osteopathy too. But never gone further than thinking...
"either that or she's trying to poop" 🤣 something I say a lot about my kid and she hasn't got any brain Injuries that I know about x
Thinks you never thought you'd say and then you became a parent... 😂
Dear parent
Why did she keep looking down and what she did when she is looking down ??
It's hard work holding her head up.
What are those lights she had in the one hospital vlog?
Those are a fibreoptic bundle and she loves it so whenever we're in hospital the play therapists bring it for her.
Hi Tova! Great video! Elin is just absolutely adorable! 😊 I do have a few questions for you, so let’s get started! Why did your doctor allow you to go 10 days over due? If he/she wouldn’t have do you believe Elin would’ve been born without any disabilities? Do you feel that the doctor is responsible for her disabilities? If so have you tried to take any legal action? As far as her bathing goes I’m assuming she requires a special seat/sling? Does she have hand splints to open up her hands a bit? If not you can roll up a wash cloth and stick it in between her palms and fingers! I’m a COTA (Certified Occupational Therapy Assistant) and we do use the wash cloths during treatment sessions on patients that have hypertonia.
Oh, that was a lot of questions. They allow you to go 14 days overdue if there are no signs of complications. I had a membrane sweep in an attempt to get things started but, well... I have not taken legal action, I don't really feel there was medical negligence, plus that is a whole can of worms that I, for my mental health's sake, don't wish to open. She has a special bath seat where she lives, i.e. her dad's place. One of those seats that is a lift and can be lowered into the water. At mine I can't even get her into my bathroom without carrying her. We had some soft hand splints for her when she was very little but they didn't do much. We have discussed hand splints with her OT but not seen anything there yet (thanks for the reminder to chase). I like the idea with the wash cloths, so thank you!
@@ParentXP sorry for all of the questions, I never knew what happened with Elin and while I was watching your video my curiosity hit the roof! Thank you for answering my questions, I really appreciate it! ♥️ You are welcome for the washcloth idea! All you need to do is fold the wash clothe long-ways then just roll it up! Hope that helps until she can get some splints! 😊
@@ParentXP Hi hun, you and your little girl are just precious and very lucky to have each other and I hope the very best for you both. I am sorry to ask again but why do you believe that Elin wouldn’t be entitled to legal action for what happened because although it maybe safe to go above your due date ... this applies only if the you were both not in any risk.. like you said you had 7 scans because of your medical condition therefore you were not never like any other healthy mum.. you were on the hospitals radar as being of risk. I completely understand for your mental health you don’t want to think about this or do anything about it but ultimately this would be a of benefit to her because this will enable both of you to get help with care, equipment, specialist speech and language and accommodation. Children who have suffered brain injury are entitled to free legal representation but you must start this process sooner rather than later as it takes years.. the good thing is you will only have to make a statement about what happened during your pregnancy and birth and all the rest the lawyers handle and keep you updated so no daily involvement or queries from you and no disruption to your life as it stands.
I think you and her father should really consider this I say this because as I’m sure you know nhs services are stretched and having paid for private intervention would be great for her and you.
I hope I haven’t overstepped off forced my opinion on you but rather just shared my opinions with you.
Could she use a Tobii Dynavox assistance app on a tablet. I used to follow an account on IG called @lifewithelliegirl and Rebecca’s daughter Ellie used one of these tablets and was such a chatterbox once she started using it. (Ellie has CP amongst other things)
I will have a look into that, thank you Hannah.
Your daughter is so beautiful! I am myself have mild cerebral palsy in my both legs and I'm profound deaf since birth. I am 52 yrs old living alone and I have an aide to help me clean my apt cuz I also have lower back/hips/pelvis pain issues that I not be able to standing long period of time that made my lower back so much pain and cramping. How old is your daughter and when is her birthday? I would love to give her special Christmas and birthday every year. May I have permission to have your home address please?
Hi Christine, hope you're doing well. Having some help sounds like a good idea. Elin is 8, she turns 9 in August. I don't give out my home address but have on my to-do list to change my PO box to being able to receive mail.
@@ParentXP I understand about your home address part. I respect your wish. 🙂
I think it's good idea to get ellin a monitor that goes on her wheelchair
I know. I need to fundraise for one. When I can find the blooming time 😂
Hi. Another special needs mum here. Has Elin ever had a microarray test done? I’m wondering if she also has a chromosome abnormality?
Hi, no she hasn't. Is there anything specific that makes you think this? And with regards to speech and language, yes she does, and this is why we have the head button. But unfortunately things are a little slow on the SALT front, I have too many other battles to fight first.
I understand! x
Her facial features do indicate strongly to me that she may have a chromosome abnormality (my child has one) A geneticist is the person to get a microarray (simple blood test) performed. In my opinion, it’s worth finding out.
PS Elin is adorable! I love her sense of humour!
Good to know, thank you. I honestly never thought beyond the brain injuries, and they are so extensive anyway that they explain pretty much everything. But I will bear this in mind.
Do you think that Elin understands both english and swedish?
I know she does. We have tested by asking the same questions in English and Swedish and she responds consistently. She has an instant reaction to hearing Swedish and she reacts differently to hearing a native vs a non-native Swedish speaker. For example, her teacher tried to sing in Swedish and Elin was in hysterics every time because she knew it wasn't quite right.
Good morning. Hugs
Good morning (well, evening really)
Does she have a speech therapist? They should have more communication ideas for you
Does she have a vns implant
No, she doesn't, but it's on my list of things to look into.
💛
1:41
Like love
Poor Elin
I’m a primary special needs teacher in special school. I know lots of the different communication aids available. Let me know if you’d like to email me. G x
Why is her daddy not helping you, at least give you a break ??? I’m not trying to be rude
Our younger daughter is with him now, and when Elin comes out of hospital she'll be doing the remainder of her recovery at his.
Fart Toba fart