the ladies room » Summer, the Season between the Seasons

april6263 · 6/28/2017 9:27 pm

LuvSeason18 wrote:
april6263 wrote:
CEK40 wrote:

That is good you are not there alone...and then you have all of us here with you too...doing as much as we can so very far away...We all wish we could be there with you so badly....We and I am speaking for the "sisterhood" kinda feel helpless....
you guys are helping me so much more than you could know.....you guys give me a place I don't have to be the rock for everyone and can just lean on some one else for a bit .....and that is huge
You just be you.....and say what ever you need to say.....feel...or whatever.....we will be glad to "carry you" in whatever way we can.

thank you so much.....I have been playing her Beatles music .....hoping that if she hears it it will somehow sooth her

CEK40 · 6/28/2017 9:27 pm

LuvSeason18 wrote:
april6263 wrote:
CEK40 wrote:
April...Do you know if they have contacted Boston Childrens Hospital...I was "googling" and they have an article about auto-immune disease...not sure if it what Niecey is dealing with but it can't hurt to check...
not sure but I will ask her doc tomorrow
Maybe it is something so rare that some doctors are not aware of it.....is there a website or something that might list rare disorders??

I am "googling" Luv....to see what I can find...

Last edited by CEK40 (6/28/2017 9:27 pm)

april6263 · 6/28/2017 9:28 pm

View from the Crow's Nest wrote:
I'm going to have to log off.
Thanks for giving us a little more information, April.
We will be praying for enlightenment for those caring for her.

Much love.

thanks View (((hugs)))

LuvSeason18 · 6/28/2017 9:28 pm

april6263 wrote:
LuvSeason18 wrote:
april6263 wrote:

the main issue is if it was just the auto-immune thing they could give her high dose steroids and calm it down....but with the pneumonia if they do that it will hinder her ability to fight the pneumonia....so they can't do that....so the question we need answered is.....how can they calm down the auto-immune response with out hindering her immune system???????
Ah......I will ask that to my friend.
that's the most important question.....even over ....for right now.....finding out what it is

Okay, I will try and get a hold of him before he goes to bed, which will probably not be for 30 minutes or so.. I will PM you even if he has no answers. Like I said, I am not sure what field he worked in, but if he has any ideas I will be glad to pass them on.

LuvSeason18 · 6/28/2017 9:29 pm

april6263 wrote:
CEK40 wrote:
View from the Crow's Nest wrote:

This breaks my heart, April...

I can't even imagine how you are dealing with this...You are doing what any of us as mothers would do and I am amazed at your strength.....
thank you......Niecey always says .....you just gotta do, what you gotta do

amazing girl..........as is her mother.

april6263 · 6/28/2017 9:30 pm

LuvSeason18 wrote:
april6263 wrote:
CEK40 wrote:
April...Do you know if they have contacted Boston Childrens Hospital...I was "googling" and they have an article about auto-immune disease...not sure if it what Niecey is dealing with but it can't hurt to check...
not sure but I will ask her doc tomorrow
Maybe it is something so rare that some doctors are not aware of it.....is there a website or something that might list rare disorders??

that's what they are thinking.....or maybe even something more commonly seen in another country

LuvSeason18 · 6/28/2017 9:30 pm

CEK40 wrote:
april6263 wrote:
CEK40 wrote:
April...Do you know if they have contacted Boston Childrens Hospital...I was "googling" and they have an article about auto-immune disease...not sure if it what Niecey is dealing with but it can't hurt to check...
not sure but I will ask her doc tomorrow
There is also an article done by Childrens Hospital of Philadelphia I am reading it now...it is pertaining to an autoimmune blood disease...don't know if that is what she may have or not....I just saw that it has mentioned treating patients that can't take corticosteroids...

Oh.......maybe she "picked up something" from all of the transfusions. I know they have tested all kinds of things before letting others receive the blood......just tossing out ideas.

april6263 · 6/28/2017 9:30 pm

CEK40 wrote:
april6263 wrote:
CEK40 wrote:
April...Do you know if they have contacted Boston Childrens Hospital...I was "googling" and they have an article about auto-immune disease...not sure if it what Niecey is dealing with but it can't hurt to check...
not sure but I will ask her doc tomorrow
There is also an article done by Childrens Hospital of Philadelphia I am reading it now...it is pertaining to an autoimmune blood disease...don't know if that is what she may have or not....I just saw that it has mentioned treating patients that can't take corticosteroids...

can you email me the link to it?????

LuvSeason18 · 6/28/2017 9:31 pm

april6263 wrote:
LuvSeason18 wrote:
april6263 wrote:

you guys are helping me so much more than you could know.....you guys give me a place I don't have to be the rock for everyone and can just lean on some one else for a bit .....and that is huge
You just be you.....and say what ever you need to say.....feel...or whatever.....we will be glad to "carry you" in whatever way we can.
thank you so much.....I have been playing her Beatles music .....hoping that if she hears it it will somehow sooth her

I am sure she can. They say people can hear things when even in a coma.

april6263 · 6/28/2017 9:32 pm

LuvSeason18 wrote:
april6263 wrote:
LuvSeason18 wrote:

Ah......I will ask that to my friend.
that's the most important question.....even over ....for right now.....finding out what it is
Okay, I will try and get a hold of him before he goes to bed, which will probably not be for 30 minutes or so.. I will PM you even if he has no answers. Like I said, I am not sure what field he worked in, but if he has any ideas I will be glad to pass them on.

thanks so much Luv (((((hugs))))))