Thought I'd share a short video clip of Jenelle's "movements" that we showed to Dr. Shields. Realize that this is just a short clip, and that Jenelle does this all day, non-stop.
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The video clip was taken at Daddy's basketball game last weekend (hence the background noise) and is just a brief example of the constant wiggling and moving she does. This was in an open area - imagine how she hurts herself in a room full of furniture.
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5 comments:
Wow! I had no idea she was moving so much. She's such a strong and active girl. I guess I remember reading earlier posts about Jenelle struggling with strength and gross motor skills, I had imagined a much more limited repretoire of movements she is capable of. Edda (who has Rett) does walk, but in some ways doesn't move as well as Jenelle, Edda doesn't twist as much as Jenelle and she also can't change directions as well as Jenelle. I can't remember if Jenelle has learned to walk yet, but she's able to get up on her knees!
I hope that she can learn to channel her movements so she can avoid furniture and so you guys can handle her more easily. At least she was enjoying the spaciousness of the gym!
Wow! So glad you posted this. I think it gives us a much better idea of what you are dealing with. She really bonked her head there at the end, but didn't really seem to care. Curious to see how you get the movements under control. She looks happy as a clam, though :)
Hi,
My wife and your adorable daughter share a few things in common. My wife became very ill almost exactly one year ago and was left with cortical blindness, cognitive deficits, siezures and more. It's funny, I also have a website www.sherrysjourney.com. It is set up for the same reasons you started yours. It's ironic we both chose the term "journey" to describe our situations. I promise that I didn't copy your idea, although I think you have had your site longer than I have had mine.
It is early in the morning here and I have been up all night. I will check out your blog in depth later today. You have done a great job with it. I hope to learn through your experience.
Hi,
Your daughter is a beautiful little girl and I am so glad to see she has such a wonderful family who never give up!!!:) My aunt is in your similar situation seeing that my 4 yr old cousin has Lennox Gastaut syndrom, CP, and Autism. We see somewhat similar behaviors in him like Jenelle although his movements are a little more restricted do of course to CP. Take care and I can't wait to hear more updates on Jenelle and Jack.
Wow. Evan "moves" a lot too. In his case I always thought it had to do with sensory seeking behavior, since he's blind. Isn't it amazing how posting a video really helps others understand? Thank you so much for putting this up.
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