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TrainwreckThe Empathic Nutritionist / Empathic Mamahood / Robyn Grogitsky-Ramirez / Luna Elva Ramirez / Glenn Ramirez / Atlas Glenn Standford Ramirez - Eyefucking Sociopath Selfie Addict Mother and Closeted Gymrat Pothead Father who use Instagram to Parade their Homemade Homunculus Tard Baby Created by their Refusal to Follow any Medical Oversights
Where even is her jaw? Can @Thomas Eugene Paris or other Medics theorize on the state of Luna’s jaw anatomy?
Are her bones literally being stretched apart?
Poor little mite.
her arms were kinda chubby there for a while. either way her head has gotten bigger so she looks smaller but weight loss is also looking to be a small factor. shes been on a bit faster decline for her, normally we notice things here and there but there's been a lot more (along w/ what robyn tells on herself with in videos and photos or admits in a weird passing way).
also the CP claim is laughable. she's trying to exploit more medical devices and support that isn't gonna work... luna needs hospice care and to be let go not wheel chairs, walkers and eye gaze communtation devices.
To be fair, she's trying to tell people that mass-market gluten free replacements are still full of "unnecessary items" and is suggesting "healthier" GF swaps.
(But really unless you've got celiac disease that's actually been diagnosed by a medical doctor it doesn't fucking matter.)
her arms were kinda chubby there for a while. either way her head has gotten bigger so she looks smaller but weight loss is also looking to be a small factor. shes been on a bit faster decline for her, normally we notice things here and there but there's been a lot more (along w/ what robyn tells on herself with in videos and photos or admits in a weird passing way).
also the CP claim is laughable. she's trying to exploit more medical devices and support that isn't gonna work... luna needs hospice care and to be let go not wheel chairs, walkers and eye gaze communtation devices.
she switches so much w/ her wacko woo beliefs that somehow this one is the most jarring
To be fair, she's trying to tell people that mass-market gluten free replacements are still full of "unnecessary items" and is suggesting "healthier" GF swaps.
(But really unless you've got celiac disease that's actually been diagnosed by a medical doctor it doesn't fucking matter.)
She has a point in way (although additives aren’t really the problem). The premade stuff often has a lot of stuff in it to make it palatable (same as a lot of vegan stuff). My friend’s mum made all her own GF stuff all her life.
I feel dirty for semi-agreeing with Mrs Eyefucker.
Where even is her jaw? Can @Thomas Eugene Paris or other Medics theorize on the state of Luna’s jaw anatomy?
Are her bones literally being stretched apart?
Poor little mite.
I'm not an expert at all, but your guess sounds pretty reasonable to me. Honestly, I've taken a lot of comfort from the realization that she's very probably unable to feel pain.
her arms were kinda chubby there for a while. either way her head has gotten bigger so she looks smaller but weight loss is also looking to be a small factor. shes been on a bit faster decline for her, normally we notice things here and there but there's been a lot more (along w/ what robyn tells on herself with in videos and photos or admits in a weird passing way).
I think it's pretty common for kids around Luna's age to chunk up a bit and then stretch out, so this could be her completely fucked brain's way of trying to have a growth spurt. I also suspect that Robyn was consciously trying to make her gain weight so as to be a candidate for another surgery, but was told on their recent trip to Children's Hospital of Orange County that Luna is not a candidate for further surgical intervention. Dr. Muhonen was the only surgeon willing to touch Luna at all, so if he won't perform more surgery, it is incredibly unlikely to happen. I think Robyn was given an unequivocal no and may have been told to reduce Luna's caloric intake. It's pretty easy to overfeed someone who is tube-fed, particularly if she doesn't move very much and can't say "I'm full!" after two bites of dinner and go back to running around like a maniac. In the Tard Baby thread, there are multiple examples of kids who absolutely explode after having a feeding tube installed, especially the ones whose parents feed them a "blended diet" instead of a commercial enteral formula.
Seizures and spasticity do increase a person's caloric requirements but ever since we learned that Robyn was told that Luna needed to gain weight before getting the shunt, I've been wondering if she thinks Luna's weight is the barrier to further surgery.
That’s a good point. Most kids like this are prescribed some sort of formula, and in the case of kids like Luna who have very little purposeful movement and therefore very little energy expenditure, they can get pretty fat (steroids also contribute).
There’s no way Robyn would give Luna formula or anything doctor or dietician-approved. Wouldn’t surprise me if she blends up some of her weird paleo concoctions… no doubt something fruit or vegetable heavy with not enough calories.
She never talks about pumping and giving Luna breastmilk, does she? Can she be bothered?
But I do think her declining health is causing the weight loss too.
Honestly pisses me off that so many kids go without needed medical equipment and checkups, yet these people keep approving Luna for tools that are completely wasted on her. Some non-verbal kid could actually get use out of the tracker, etc.
There’s no way Robyn would give Luna formula or anything doctor or dietician-approved. Wouldn’t surprise me if she blends up some of her weird paleo concoctions… no doubt something fruit or vegetable heavy with not enough calories.
She does blend shit up to feed Luna and has shown how she "hacks" the feeding pump tubing to accommodate the sludgy consistency of whatever it is she puts through it.
I'm not even entirely opposed to a blenderized diet for kids with feeding tubes; the commercial enteral formulas are highly processed and kind of gross. However, I don't trust people like Robyn (or the other blenderized diet moms from the Tard Baby thread) to understand basic nutrition, much less the specialized fertilizer requirements for their spuds.
Why are they trying to get her to lift her head up? It's pretty obvious she can't do it. It must be so hard on her neck to keep her head down like that... It's sad to see how her head just plops down when the PT lets go...
is that her shunt? Red is the area yellow line right above the…tube/vein looking thing
I legit thought her neck was gonna snap.
Why are they trying to get her to lift her head up? It's pretty obvious she can't do it. It must be so hard on her neck to keep her head down like that... It's sad to see how her head just plops down when the PT lets go...
I know that atlas basically being a part of her sessions can be kinda weird but then I remember it’s probably the most adult interaction he gets without a phone in his face outside of grandparents…..
Also they support her head only when she’s in the walker thing it seems as of late… but the pt puts her hands directly on the water noggin. That has to feel weird
Yes, that's her shunt. Usually, the neurosurgeon tries really hard to make the incision follow the normal contour of hair growth, so that the scar is pretty much invisible unless you know that the person has a shunt and know what they look like. Cosmesis is important even for a life-saving surgery like placement of a VP shunt, especially since once a shunt is placed, it's usually not removed. The catheter tubing goes through the cranium (skull) and into the brain, so removal is risky. Here's a diagram.
Sometimes the valve and tubing is visible under the skin, especially in kids because they're smaller. Some shunt valves are "programmable", meaning the flow of CSF can be adjusted by a neurosurgeon transcutaneously using a magnetic device, which avoids a repeat surgery. The programmable valves are a little bigger and thus more visible under the skin. Pictures below the spoiler.
The programmable valves look like this:
The flow rate can be changed by placing a special tool with a magnetic disc inside against the valve.
This is also why some people's shunts get all fucky after an MRI. It's kind of like in Futurama, where magnets fuck up Bender's inhibition unit and make him sing folk songs.
Here's a photo of a young Mozambican child with a shunt. Because the child is severely malnourished, the shunt valve has eroded overlying skin and the path of the tubing into the abdomen is visible, and it gives a good visual representation of the anatomy involved. I'm spoilering the photo because it's disturbing and sad, but it's not really gory or anything. Probably NSFW, though.
With Luna's ever evolving head shape, it was pretty much impossible for her surgeon to have any idea how to place the shunt so that the valve wouldn't end up protruding at some point. He also likely had limited options as far as where to place it because of Luna's neuroanatomy. Normally, a shunt is placed in the lateral ventricle and drains to the abdomen or the right atrium of the heart via a long tube. Since Luna doesn't have lateral ventricles, he probably just had to kind of stick it in the largest cyst and hope it worked. I'm guessing that the more her head grows, the thinner her skin is stretched over the shunt valve. If Robyn weren't a piece of shit I'd assume she was keeping an eye on Luna's skin to make sure it's not eroding in the area over the valve. Obviously, getting an infection in the shunt valve or tubing is Very Bad because it's a direct conduit to the brain. I'm sure the Healy is doing the trick, though.
