Johnl260589
kiwifarms.net
- Joined
- Apr 20, 2021
It’s when her head started to grow and she became very malnourished that does it for me. BARF.
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She made an instagram video post to show the great journey in pictures of Luna before and after shunt surgery.
"Luna’s Journey
Today we’re celebrating Luna’s Shunt-iversary and the journey our family has been on over the past 2 years, April 2019-April 2021. While our journey has been heartbreaking at times, it has also taught us to appreciate all the little things, to never give up hope, that love really can move mountains, and to live in the light no matter the darkness that surrounds you. Luna, our warrior baby, we’re so so proud of you!! It’s only up from here baby girl!
Thank you to every one of you who has supported us, loved us, cared for us, helped up along the way. Words will never be able to express how much you all have given to us over the past 2 years. Thank you from the bottom of our hearts!"
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She changes Luna's diagnosis to just hydrocephalus when she posts about her now.
"Happy Shunt-iversary to Luna!!!!
It’s hard to believe it’s only been 1 year since Luna’s life saving shunt was placed. Since then Luna’s whole life has changed. She went from being on deaths door, in excruciating pain, unable to continue hitting milestones or even be held due to how fragile she was and the pain she was in, to being a THRIVING little girl who loves life, is almost always happy, who loves exploring the world! She’s the most determined, strong, and miraculous little soul and I am SOOOOO PROUD TO BE HER MAMA!!!
Luna was diagnosed with hydrocephalus at 3 months old. Normally a shunt would be placed right after diagnosis, but the surgeons told us it was impossible and refused to shunt her. We fought for over a year until we found a surgeon who would preform this life saving procedure on Luna. Without her shunt, it’s likely the mounting pressure on her brainstem would of killed her. Last April, on this very day, 2 of Luna’s earth angels, @michaelgordonmuhonen and @t_malone3, preformed surgery on my baby girl FINALLY giving her the shunt she should of had since diagnosis and it absolutely saved her and changed her life for the better. I don’t even think her doc/PA knew how big of a comeback Luna would make over the next year; she’s shattered any expectation or limitation set for her Dr. Muhonen and Tony, you guys are such amazing souls. I truly hope you both know how loved you are and how much you both mean to us for saving Luna and all the other kids you save/help the world needs more souls like you both and Luna, that’s for sure!
Photo is the day of her surgery, before her shunt was placed @chocchildrens and the after photo was taken on Monday 4/26/21 "
Funny she’s forgotten all about the doctor informing her that Luna had little brain matter at 3 months.
Of course she is only mentioning hydrocephalus now, because it’s a condition that can be treated, shunts do help and the prognosis can vary widely up to a normal life with proper treatment.
Multi-cystic encephalomalacia with hydrocephalus is an entirely different matter with no treatment because we can’t rebuild or grow the human brain, we don’t even know how to stop the cysts from blowing out her skull much less replace them with grey matter.
Dear lord, look at that TURKEY WATTLE!
This is Luna going beyond expectations of doctors???? What were their expectations them , simply that she didn’t die on the table?View attachment 2131749
She made an instagram video post to show the great journey in pictures of Luna before and after shunt surgery.
"Luna’s Journey
Today we’re celebrating Luna’s Shunt-iversary and the journey our family has been on over the past 2 years, April 2019-April 2021. While our journey has been heartbreaking at times, it has also taught us to appreciate all the little things, to never give up hope, that love really can move mountains, and to live in the light no matter the darkness that surrounds you. Luna, our warrior baby, we’re so so proud of you!! It’s only up from here baby girl!
Thank you to every one of you who has supported us, loved us, cared for us, helped up along the way. Words will never be able to express how much you all have given to us over the past 2 years. Thank you from the bottom of our hearts!"
View attachment 2131791
She changes Luna's diagnosis to just hydrocephalus when she posts about her now.
"Happy Shunt-iversary to Luna!!!!
It’s hard to believe it’s only been 1 year since Luna’s life saving shunt was placed. Since then Luna’s whole life has changed. She went from being on deaths door, in excruciating pain, unable to continue hitting milestones or even be held due to how fragile she was and the pain she was in, to being a THRIVING little girl who loves life, is almost always happy, who loves exploring the world! She’s the most determined, strong, and miraculous little soul and I am SOOOOO PROUD TO BE HER MAMA!!!
Luna was diagnosed with hydrocephalus at 3 months old. Normally a shunt would be placed right after diagnosis, but the surgeons told us it was impossible and refused to shunt her. We fought for over a year until we found a surgeon who would preform this life saving procedure on Luna. Without her shunt, it’s likely the mounting pressure on her brainstem would of killed her. Last April, on this very day, 2 of Luna’s earth angels, @michaelgordonmuhonen and @t_malone3, preformed surgery on my baby girl FINALLY giving her the shunt she should of had since diagnosis and it absolutely saved her and changed her life for the better. I don’t even think her doc/PA knew how big of a comeback Luna would make over the next year; she’s shattered any expectation or limitation set for her Dr. Muhonen and Tony, you guys are such amazing souls. I truly hope you both know how loved you are and how much you both mean to us for saving Luna and all the other kids you save/help the world needs more souls like you both and Luna, that’s for sure!
Photo is the day of her surgery, before her shunt was placed @chocchildrens and the after photo was taken on Monday 4/26/21 "
They actually were. No doctor wanted to do this surgery because of the fact Luna was so medically fragile that there was more risk to operate then to let nature run its course. It was also deemed futile because the operation would change nothing shes severely brain damaged and the disorder is progressive due to its nature.This is Luna going beyond expectations of doctors???? What were their expectations them , simply that she didn’t die on the table?
If she didnt get the shunt and her mother believed in actually helping her it woulda been fast. They woulda just put her on morphine and let nature run its course and give her a painless death.I'm sorry if we've covered this before, but how long would Luna have lived if she had not gotten the shunt? I just still feel so awful for them prolonging her "life".
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Translation: we listen to and cite doctors when they say she is going to live but not when they indicate she is going to die.
I don’t know how to explain it but... I feel like the shunt has only made the fluid move into more parts of her brain? Skull? Head? She doesn’t have a brain so. It’s not all collected in one spot like it was. I am in awe that she even survived the surgery. Poor creature.View attachment 2131749
She made an instagram video post to show the great journey in pictures of Luna before and after shunt surgery.
"Luna’s Journey
Today we’re celebrating Luna’s Shunt-iversary and the journey our family has been on over the past 2 years, April 2019-April 2021. While our journey has been heartbreaking at times, it has also taught us to appreciate all the little things, to never give up hope, that love really can move mountains, and to live in the light no matter the darkness that surrounds you. Luna, our warrior baby, we’re so so proud of you!! It’s only up from here baby girl!
Thank you to every one of you who has supported us, loved us, cared for us, helped up along the way. Words will never be able to express how much you all have given to us over the past 2 years. Thank you from the bottom of our hearts!"
View attachment 2131791
She changes Luna's diagnosis to just hydrocephalus when she posts about her now.
"Happy Shunt-iversary to Luna!!!!
It’s hard to believe it’s only been 1 year since Luna’s life saving shunt was placed. Since then Luna’s whole life has changed. She went from being on deaths door, in excruciating pain, unable to continue hitting milestones or even be held due to how fragile she was and the pain she was in, to being a THRIVING little girl who loves life, is almost always happy, who loves exploring the world! She’s the most determined, strong, and miraculous little soul and I am SOOOOO PROUD TO BE HER MAMA!!!
Luna was diagnosed with hydrocephalus at 3 months old. Normally a shunt would be placed right after diagnosis, but the surgeons told us it was impossible and refused to shunt her. We fought for over a year until we found a surgeon who would preform this life saving procedure on Luna. Without her shunt, it’s likely the mounting pressure on her brainstem would of killed her. Last April, on this very day, 2 of Luna’s earth angels, @michaelgordonmuhonen and @t_malone3, preformed surgery on my baby girl FINALLY giving her the shunt she should of had since diagnosis and it absolutely saved her and changed her life for the better. I don’t even think her doc/PA knew how big of a comeback Luna would make over the next year; she’s shattered any expectation or limitation set for her Dr. Muhonen and Tony, you guys are such amazing souls. I truly hope you both know how loved you are and how much you both mean to us for saving Luna and all the other kids you save/help the world needs more souls like you both and Luna, that’s for sure!
Photo is the day of her surgery, before her shunt was placed @chocchildrens and the after photo was taken on Monday 4/26/21 "
The way the disorder works there are multiple fluid filled cysts so its impossible to drain them all.I don’t know how to explain it but... I feel like the shunt has only made the fluid move into more parts of her brain? Skull? Head? She doesn’t have a brain so. It’s not all collected in one spot like it was. I am in awe that she even survived the surgery. Poor creature.
That’s what I figured. Could they sort of flatten over time or move in a way? Her head slowly looks more and more concave as if some sort of drained but not enough to make a dif. The shunt really was useless.The way the disorder works there are multiple fluid filled cysts so its impossible to drain them all.
I think the increase in concaveness you're seeing is actually coming from the cysts continuing to grow and pushing out the rest of the head, rather than the sunken portion shrinking.That’s what I figured. Could they sort of flatten over time or move in a way? Her head slowly looks more and more concave as if some sort of drained but not enough to make a dif. The shunt really was useless.
That’s what I figured. Could they sort of flatten over time or move in a way? Her head slowly looks more and more concave as if some sort of drained but not enough to make a dif. The shunt really was useless.
I thought she and Luna communicated on some spiritual higher wavelength bullshit.
By definition, cows don't take advice and they don't change their behavior. But here's what I would "expect her to do":with that being said... what the fuck do you guys want her to do? stick her in a box and put her under a bed? thats still her kid,. if she didnt at least try to give her a quality of life which she clearly is. whether or not things work is different but at least shes trying. America is a fucked country. if a child is too much for you to handle and you surrender your child, youre put in jail, you cant euthanize your kid, the hospital isn't going to hold on to luna forever, theyre going to keep sending her home, put her in some sort of home and forget she exists? she clearly is thriving shes getting bigger and fatter. what should she do? stop feeding her and just let her die? it doest work like that. like cut her a break. even something as fucking stupid as turkey sauce or whatever, at least it seems like the kid likes it. I dont know all the terms here or anything so im not trying to be "sunshine" or whatever the fuck it is but really... what do you expect them to do with her? I mean could she do better, maybe? but you cant get blood from a rock. and, for what its worth, the kid couldn't move her mouth a few months ago and now she can clearly take a little liquid food orally. also, bc of her condition like (I forget who explained it not he last page) right now, her neurological hand tightness might release and she might be able to grab a rattle and hit her mom with it. they dont know if she actually is able to hear or see.. shes doing a little more then she used to.
also its unfair robyn gets all the fucking blame. she has a husband who ENCOURAGED her to stay home instead of saying "fuck this, that baby is mine too im calling 911." or "shes wearing that helmet every day or else." theres two people there not just one.