Re: Conference AND & a Updates

[Guest guest]

Malisa

Thanks for the updates on and a. If you talk with either,

please pass along my hugs and positive thoughts.

I'm glad we got to meet.

laurie

> From: Malilibear@...

> Reply-To:

> Date: Mon, 9 Aug 2004 22:23:38 EDT

> To:

> Subject: Conference AND & a Updates

>

> Hi all,

> I wanted to say that I really enjoyed meeting many of you at the conference.

> It was also really good to get some time to talk to some of the mito

> specialists, as well, but I really enjoyed spending time with you guys the

> most. I

> always feel like a few days goes by so fast when I'm at conferences like this.

> Thanks to Laurie, , Bug, and Christie for their hardwork. It definitely

> takes energy to do what all of you did and we're all really appreciative.

>

> I talked with 's mom and also with a tonight. Both were

> admitted to the hospital today. flew straight to Cleveland from the

> conference b/c she wasn't feeling well. They got a room at the RMH and today

> she got

> admitted to CCF. She saw a pediatric GI doctor today who wanted to try a few

> more things before thinking about removing her colon. He'll be coming back

> tomorrow to see her again and they'll talk more about what the plan is. Her

> mom

> sounded much more hopeful about coming up with a good plan since they'd seen

> him.

> He sounds like he's really going to try to think about solutions for .

> YAY!

>

> And...a had her GJ tube placed today. She said that she had some

> tremors after she woke up and had vomited several times this afternoon. They

> are

> giving her demerol for pain and it seems to be helping some. They still have

> her

> NPO and still have an NG tube down for suction if needed. She's not sure if

> she'll go home tomorrow or not, but originally that was the plan.

>

> Please keep both of these inspirational young women in your prayers. I'll

> update tomorrow if I hear anything more.

> Malisa

>

>

>

[Guest guest]

Malisa,

Thank you so much for letting us know about and a. Both of these

young women have a great deal of courage. I was amazed that made the

trip to conference. I am praying that all will go well for her and that

attending the conference wasn't too much for her. Please let her know she is in

my thoughts.

a was one young Mitoldie that I got to meet at the Dallas conference.

She's been thru a great deal. I certainly hope she recovers quickly and is on

her way home soon. This will be an adjustment for her but knowing her, I am

sure she will do well. I'm sorry she had problems immediately after surgery.

She too is in my prayers. If you speak to her, please share this with her.

So many people I know take their good health for granted. They have no idea

what kind of strength is on this list of wonderful people. I don't think I know

a more amazing group anywhere.

Alice

[Guest guest]

Malisa,

If you have the opportunity, please let and a know

that I'm thinking of them and wishing them both a speedy recovery.

Maggie

> Hi all,

> I wanted to say that I really enjoyed meeting many of you at the

conference.

> It was also really good to get some time to talk to some of the

mito

> specialists, as well, but I really enjoyed spending time with you

guys the most. I

> always feel like a few days goes by so fast when I'm at

conferences like this.

> Thanks to Laurie, , Bug, and Christie for their hardwork. It

definitely

> takes energy to do what all of you did and we're all really

appreciative.

>

> I talked with 's mom and also with a tonight. Both

were

> admitted to the hospital today. flew straight to Cleveland

from the

> conference b/c she wasn't feeling well. They got a room at the RMH

and today she got

> admitted to CCF. She saw a pediatric GI doctor today who wanted to

try a few

> more things before thinking about removing her colon. He'll be

coming back

> tomorrow to see her again and they'll talk more about what the

plan is. Her mom

> sounded much more hopeful about coming up with a good plan since

they'd seen him.

> He sounds like he's really going to try to think about solutions

for .

> YAY!

>

> And...a had her GJ tube placed today. She said that she had

some

> tremors after she woke up and had vomited several times this

afternoon. They are

> giving her demerol for pain and it seems to be helping some. They

still have her

> NPO and still have an NG tube down for suction if needed. She's

not sure if

> she'll go home tomorrow or not, but originally that was the plan.

>

> Please keep both of these inspirational young women in your

prayers. I'll

> update tomorrow if I hear anything more.

> Malisa

>

>

>

[Guest guest]

Malisa,

sending love and prayers for the both of them

[Guest guest]

Tks for the update, Malissa. I always think of a as the

Bright Spirit of Mitoldies, and too has her own special

inner light that shines into the darkest corners of cyberspace. I am

especially identifying with a right now, having had my own J-

tube surgery July 2003, something I never thought would happen.

Definitely felt like a fifth appendage for a long time, but now

seems pretty ho-hum. We have also figured out ways to keep all the

medical equipment handy but more out of sight, so the house looks

more like a home and less like a hospital. I have always maintained

that normal is what you make it, but I still hated all the obvious

signs of illness that ruined my beloved prairie decor! We did in

fact have a hospital bed in the middle of the living room for some

time after the surgery.... :-)

Hugs to both Bright Lights!

Barbara

> Hi all,

> I wanted to say that I really enjoyed meeting many of you at the

conference.

> It was also really good to get some time to talk to some of the

mito

> specialists, as well, but I really enjoyed spending time with you

guys the most. I

> always feel like a few days goes by so fast when I'm at

conferences like this.

> Thanks to Laurie, , Bug, and Christie for their hardwork. It

definitely

> takes energy to do what all of you did and we're all really

appreciative.

>

> I talked with 's mom and also with a tonight. Both

were

> admitted to the hospital today. flew straight to Cleveland

from the

> conference b/c she wasn't feeling well. They got a room at the RMH

and today she got

> admitted to CCF. She saw a pediatric GI doctor today who wanted to

try a few

> more things before thinking about removing her colon. He'll be

coming back

> tomorrow to see her again and they'll talk more about what the

plan is. Her mom

> sounded much more hopeful about coming up with a good plan since

they'd seen him.

> He sounds like he's really going to try to think about solutions

for .

> YAY!

>

> And...a had her GJ tube placed today. She said that she had

some

> tremors after she woke up and had vomited several times this

afternoon. They are

> giving her demerol for pain and it seems to be helping some. They

still have her

> NPO and still have an NG tube down for suction if needed. She's

not sure if

> she'll go home tomorrow or not, but originally that was the plan.

>

> Please keep both of these inspirational young women in your

prayers. I'll

> update tomorrow if I hear anything more.

> Malisa

>

>

>

[Guest guest]

Desar malisa, Please tell and a they will both be in

my thoughts and prayers (as they usually are). You are all such

courageous young women!, Celia

> Malisa

>

> Thanks for the updates on and a. If you talk with either,

> please pass along my hugs and positive thoughts.

>

> I'm glad we got to meet.

>

> laurie

>

> > From: Malilibear@a...

> > Reply-To:

> > Date: Mon, 9 Aug 2004 22:23:38 EDT

> > To:

> > Subject: Conference AND & a Updates

> >

> > Hi all,

> > I wanted to say that I really enjoyed meeting many of you at the

conference.

> > It was also really good to get some time to talk to some of the mito

> > specialists, as well, but I really enjoyed spending time with you

guys the

> > most. I

> > always feel like a few days goes by so fast when I'm at

conferences like this.

> > Thanks to Laurie, , Bug, and Christie for their hardwork. It

definitely

> > takes energy to do what all of you did and we're all really

appreciative.

> >

> > I talked with 's mom and also with a tonight. Both were

> > admitted to the hospital today. flew straight to Cleveland

from the

> > conference b/c she wasn't feeling well. They got a room at the RMH

and today

> > she got

> > admitted to CCF. She saw a pediatric GI doctor today who wanted to

try a few

> > more things before thinking about removing her colon. He'll be

coming back

> > tomorrow to see her again and they'll talk more about what the

plan is. Her

> > mom

> > sounded much more hopeful about coming up with a good plan since

they'd seen

> > him.

> > He sounds like he's really going to try to think about solutions

for .

> > YAY!

> >

> > And...a had her GJ tube placed today. She said that she had

some

> > tremors after she woke up and had vomited several times this

afternoon. They

> > are

> > giving her demerol for pain and it seems to be helping some. They

still have

> > her

> > NPO and still have an NG tube down for suction if needed. She's

not sure if

> > she'll go home tomorrow or not, but originally that was the plan.

> >

> > Please keep both of these inspirational young women in your

prayers. I'll

> > update tomorrow if I hear anything more.

> > Malisa

> >

> >

> >

[Guest guest]

Hi ,

Yep... had a bag that said her name on the outside of it. I wish I had

more time to chat too. I'm hoping to get to St Louis next year, although I will

be getting married the following Sept. so we'll have to see how busy things are.

I passed along everyone's e-mail messages to a last night and read each

one to her. She was really touched by them. They had taken the NG tube out and

were letting her try to eat a little. Her pain from the getting the GJ tube in

was still bad and she's still pretty weak, but hopefully she will be home today.

Hugs, Malisa