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CorvetteWaxer wrote: Mon Sep 03, 2018 11:18 am Okay, I really fucking suck at seeing new threads here that I'm not subscribed to.

I just saw this last night and just sent you a donation a few minutes ago. I really hope it helps you guys out. I normally never say that I'm praying for anything or anyone, but I don't think it can hurt in this case, so I am thinking about your family and only wishing the best. I sincerely hope that they figure out what is going on and that it is all smiles and good times going forward as things return to normal.
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You’re a good dude :waxer:
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CorvetteWaxer wrote:Okay, I really fucking suck at seeing new threads here that I'm not subscribed to.

I just saw this last night and just sent you a donation a few minutes ago. I really hope it helps you guys out. I normally never say that I'm praying for anything or anyone, but I don't think it can hurt in this case, so I am thinking about your family and only wishing the best. I sincerely hope that they figure out what is going on and that it is all smiles and good times going forward as things return to normal.
:wub:

Thanks man, and don’t worry, it will help. Queue up four new monthly expenses in the form of regular payments to hospitals/etc. I’m not normally a big discloser on the internets but seeing as how everyone here has been so generous I ought to keep y’all updated. Suffice to say the medical bills are many thousands.

We’re working on scheduling that follow-up MRI, and her neurologist wants to also have a consult the same day afterwards and try to coordinate with the head Dr from the mitochondrial team. They might want to do a biopsy to get some live cells and do some testing to see how they react to different things.

She’s been fine, though she does every once in a while refer to not being able to move and not wanting that to happen again. We’ve just been very diligent about not letting her be near anyone who is sick, and being extra careful with hand washing and all that.




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Calvinball wrote: Tue Sep 04, 2018 6:59 am
CorvetteWaxer wrote:Okay, I really fucking suck at seeing new threads here that I'm not subscribed to.

I just saw this last night and just sent you a donation a few minutes ago. I really hope it helps you guys out. I normally never say that I'm praying for anything or anyone, but I don't think it can hurt in this case, so I am thinking about your family and only wishing the best. I sincerely hope that they figure out what is going on and that it is all smiles and good times going forward as things return to normal.
:wub:

Thanks man, and don’t worry, it will help. Queue up four new monthly expenses in the form of regular payments to hospitals/etc. I’m not normally a big discloser on the internets but seeing as how everyone here has been so generous I ought to keep y’all updated. Suffice to say the medical bills are many thousands.

We’re working on scheduling that follow-up MRI, and her neurologist wants to also have a consult the same day afterwards and try to coordinate with the head Dr from the mitochondrial team. They might want to do a biopsy to get some live cells and do some testing to see how they react to different things.

She’s been fine, though she does every once in a while refer to not being able to move and not wanting that to happen again. We’ve just been very diligent about not letting her be near anyone who is sick, and being extra careful with hand washing and all that.




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That's sad that she remembers what it's like not to be able to move. Hopefully when she'll older it'll be a distant memory.
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SAWCE wrote:
Calvinball wrote: Tue Sep 04, 2018 6:59 am :wub:

Thanks man, and don’t worry, it will help. Queue up four new monthly expenses in the form of regular payments to hospitals/etc. I’m not normally a big discloser on the internets but seeing as how everyone here has been so generous I ought to keep y’all updated. Suffice to say the medical bills are many thousands.

We’re working on scheduling that follow-up MRI, and her neurologist wants to also have a consult the same day afterwards and try to coordinate with the head Dr from the mitochondrial team. They might want to do a biopsy to get some live cells and do some testing to see how they react to different things.

She’s been fine, though she does every once in a while refer to not being able to move and not wanting that to happen again. We’ve just been very diligent about not letting her be near anyone who is sick, and being extra careful with hand washing and all that.




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That's sad that she remembers what it's like not to be able to move. Hopefully when she'll older it'll be a distant memory.
Yeah, in the first couple weeks she was experiencing some post traumatic stress issues. I think she would have nightmares about it but when she would wake up it would take her a while to come back to reality and realize she was ok.


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Calvinball wrote: Tue Sep 04, 2018 11:19 am
SAWCE wrote:
That's sad that she remembers what it's like not to be able to move. Hopefully when she'll older it'll be a distant memory.
Yeah, in the first couple weeks she was experiencing some post traumatic stress issues. I think she would have nightmares about it but when she would wake up it would take her a while to come back to reality and realize she was ok.


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</3

Much love man. That's got to be extra tough as a parent when there's literally nothing you can do.
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:(. Really hoping you get this figured out soon.
:wap: Where are these mangos?
Detroit wrote: Fri Apr 16, 2021 1:19 pm I don't understand anything anymore.
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Working on scheduling the next follow-up, just waiting to hear back from radiology.


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Your move, Melon the one-upper......
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KYGTIGuy wrote: Wed Sep 05, 2018 9:37 am Your move, Melon the one-upper......
:lolol:
:wap: Where are these mangos?
Detroit wrote: Fri Apr 16, 2021 1:19 pm I don't understand anything anymore.
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WTF.

Got 2 emails this morning that my donation to Calvin and the payment to GofundMe was refunded. No other information than this, and my account on the site says I've made no donations:
A refund of $2,250.00 has been issued for the payment you made to Support the Segal Family. The money you were charged will return within 3 - 7 business days.
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CorvetteWaxer wrote: Tue Sep 11, 2018 9:48 am WTF.

Got 2 emails this morning that my donation to Calvin and the payment to GofundMe was refunded. No other information than this, and my account on the site says I've made no donations:
A refund of $2,250.00 has been issued for the payment you made to Support the Segal Family. The money you were charged will return within 3 - 7 business days.
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Maybe the GFM page needed to be confirmed again to make sure it was all legit? Dammit [user not found] answer your feckin e-mails.
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Desertbreh wrote: Thu Oct 17, 2019 3:05 pm DFD. The forum where everybody makes the same choices and then tells anybody trying to join the club that they are the stupidest motherfucker to ever walk the earth.
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We are in the hospital once again. She’s doing ok but has a fever, so they had us bring her in for monitoring.


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Calvinball wrote: Mon Sep 17, 2018 3:04 pm We are in the hospital once again. She’s doing ok but has a fever, so they had us bring her in for monitoring.


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:( hope this one doesn't turn into anything worse
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SAWCE wrote:
Calvinball wrote: Mon Sep 17, 2018 3:04 pm We are in the hospital once again. She’s doing ok but has a fever, so they had us bring her in for monitoring.


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:( hope this one doesn't turn into anything worse
They just decided they are going to start her on roids now, which will hopefully stave off the crazy decompensation like before.


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Calvinball wrote: Mon Sep 17, 2018 3:53 pm
SAWCE wrote:
:( hope this one doesn't turn into anything worse
They just decided they are going to start her on roids now, which will hopefully stave off the crazy decompensation like before.


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Poor thing. Glad they at least have a plan of attack for when this starts to happen now in order to minimize it. Take the progress where you can. Keep us posted after you've got her all attended to, please.
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Freakin’ :[user not found]: treating us like :neek: treats us.
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Desertbreh wrote: Thu Oct 17, 2019 3:05 pm DFD. The forum where everybody makes the same choices and then tells anybody trying to join the club that they are the stupidest motherfucker to ever walk the earth.
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Calvinball wrote: Mon Sep 17, 2018 3:04 pm We are in the hospital once again. She’s doing ok but has a fever, so they had us bring her in for monitoring.


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DAng. :(

Good luck and keep us posted.
:wap: Where are these mangos?
Detroit wrote: Fri Apr 16, 2021 1:19 pm I don't understand anything anymore.
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She’s doing well. Fever actually went down last night after she got worse in the ER. The strategy seems to have worked, no decompensation at this point. She’s having an MRI tomorrow plus some other tests, still hoping to pin this thing down so we can come up with a better game plan than taking her to the ER every time she has a fever.


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Calvinball wrote: Tue Sep 18, 2018 8:59 pm She’s doing well. Fever actually went down last night after she got worse in the ER. The strategy seems to have worked, no decompensation at this point. She’s having an MRI tomorrow plus some other tests, still hoping to pin this thing down so we can come up with a better game plan than taking her to the ER every time she has a fever.


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Thanks for the good news.

What is decompensation?
:wap: Where are these mangos?
Detroit wrote: Fri Apr 16, 2021 1:19 pm I don't understand anything anymore.
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wap wrote:
Calvinball wrote: Tue Sep 18, 2018 8:59 pm She’s doing well. Fever actually went down last night after she got worse in the ER. The strategy seems to have worked, no decompensation at this point. She’s having an MRI tomorrow plus some other tests, still hoping to pin this thing down so we can come up with a better game plan than taking her to the ER every time she has a fever.


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Thanks for the good news.

What is decompensation?
In medical terms? It’s when everything falls apart.


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Calvinball wrote: Tue Sep 18, 2018 10:24 pm
wap wrote:
Thanks for the good news.

What is decompensation?
In medical terms? It’s when everything falls apart.


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Is that the definition in your context above?
:wap: Where are these mangos?
Detroit wrote: Fri Apr 16, 2021 1:19 pm I don't understand anything anymore.
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wap wrote:
Calvinball wrote: Tue Sep 18, 2018 10:24 pm In medical terms? It’s when everything falls apart.


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Is that the definition in your context above?
Yep! So plan was successful because she had a fever and didn’t end up with any neurological issues.


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Calvinball wrote: Wed Sep 19, 2018 10:50 am
wap wrote:
Is that the definition in your context above?
Yep! So plan was successful because she had a fever and didn’t end up with any neurological issues.


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Good to hear!
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Calvinball wrote: Wed Sep 19, 2018 10:50 am
wap wrote:
Is that the definition in your context above?
Yep! So plan was successful because she had a fever and didn’t end up with any neurological issues.


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Got it. :like: Very good to hear.
:wap: Where are these mangos?
Detroit wrote: Fri Apr 16, 2021 1:19 pm I don't understand anything anymore.
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