- Joined
- Jan 8, 2022
Posted around 10 PM Alex's time.
Toddlers shouldn't be going to bed at 10 PM-- just stating the obvious.
Toddlers shouldn't be going to bed at 10 PM-- just stating the obvious.
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There's a certain amount of dirt you've to eat before you die -shrugs-I know kids can be filthy little beasts but it really bugs me that as soon as Ari is with Alex and her family, she looks like she's been rolling in the dirt in cheap, shitty clothes. She's such an adorable nugget.
At least we didn’t have to hear her trying to swallow in the video. I’m still haunted by the sounds I’ve heard her make in videos eating.Alex ate a raw onion (cursed video) and took Ari to the library (good start, now sign her up for summer reading and get her some picture books-- and take her to story time!).
Stories:
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Raw onion video from stories:
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Grid post:
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You can see this is the Palos Heights Public Library-- the library in her hometown, where her parents' primary residence is.
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I’m surprised to hear she could walk as a child?
Ugh, don't talk with your mouth full, Alex.Raw onion video from stories:
Ohh I was confused bc of her phrasing about going to the library, thanks.She never walked, not even as a child. She's propped in a chair in that photo of her painting. She's always been unable to walk or to stand. The painting photo is blurry or something, so it's hard to see what's going on. She's referenced a stander (I think) that she had in early childhood, but she said she wasn't able to use that, either.
Onion update:
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I am fascinated and appalled by this. It looks so uncomfortable, and I can’t help but wonder what she would look like if she had kept herself as healthy as possible.Those Library photos are really showing how much worse her body folding has become. Her shoulders are getting closer and closer to her knees.
A while back there was a woman on TikTok that I think had SMA as well. I think she was in Canada, had been adopted. Her mum and carers did exercises for her prescribed by a physiotherapist, massages to help the spasming muscles, her nails/hair/makeup was always done. She had actual hobbies, did disability modeling etc. while she had some contractures, they weren’t like this. Alcohol also causes a lot of extra bloating and inflammation so that’s not helping.I am fascinated and appalled by this. It looks so uncomfortable, and I can’t help but wonder what she would look like if she had kept herself as healthy as possible.
The main issue with all the folding is it limits an already limited lung capacity. Most people with SMA I've seen online do the best they can to not "fold" like she is to keep them healthy longer. She though does not seem to want to use the wheelchair restraints to keep her upright.Might be a silly question but surely SMA sufferers still experience pain from all that folding? The position she's in looks uncomfortable at best.
Ari is a cutie pie still.