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Dearest Holly,

I am sorry that I didn't make it to your area of the woods this weekend, but

maybe in the near future, it would be very nice to. I think you are the

closest person to me within driving distance. Please talk to me or anyone

else on the site friend, when you feel frustrated and in pain. We ALL

understand what you are going through. We truly do! I have often wondered

about you, and how you have been, and was a little nervous at times, because

you have been so quiet. Remember that the people on this support group are

here for you Holly. Someone will always be around to talk and please feel

free to e-mail me anytime friend. It was truly wonderful to see you on the

site and talking. Hugs as always.

Love, Sue #2

-- Re: Holly

i have been having a rough time and getting very depressed from it

I am about aan hour and 15 minutes from where you will be

we camp next dooe in north woodstock in the summer

my telephone # is 603-679-5903

Thanks so much for your concern

from lincoln if you take 93 south to exit 15e to 395

continue on 395 til the end you end up on route 4 continue on route 4 (you

will go half way around epsom circle about halfway mark from end of 393 till

me house) you will then still continue on route 4 going through Northwood

You will then take a right onto rooute 152 Nottingham

My house is on the right house #190 About 4.5 miles on 152

take careSue

love holly

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Hi Holly:

I was in the chat room when you came in. By the time I typed a

hello you were gone. Sorry I missed you. RJ I was there when you came in

also but I didn't get to talk to you either. Sorry I missed all you guys

but if you would stay a little longer maybe we could hook up, lol. Sorry

again! Gang I have been in the chat room since 8pm Central time, 9pm Eastern

time and only the two people mentioned came into the room. Is the time wrong

or are we not advertising it enough? Please let me know. I am going to get

out of there for now. Sorry I missed Y'all. Come up and chat some day.

We Will Win

Love Y'all

Mom & Dad

Bob & Carole

Please Visit the International Stills Disease Foundation Web Site at:

www.stillsdisease.org

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  • 4 weeks later...

Sorry to hear about Holly.You guys will be in my thoughts.

Holly

Hi guys, Holly has been going through a lot the last few months, she has had off and on again, belly and chest pain, the chest pain they believed to be costo condroitis, now she is wheezing, and her breathing is down to 50% ...........in the mean time, with her belly pain, they have down bloodwork and 2 inconclusive ultrasounds, so they did a cat scan. Well, we got the results from the cat scan, she has many and generous lymph nodes in her abdomen. They at this time do not know what they are from. They want to do some stool samples to rule out infection, as they seem to think they could be reactive to some kind of infection. The say they do not appear cancer or tumor like. That's not enough of a definite answer for me. They are moving her bronchoscopy/endoscopy/ph probe to Friday. Oh and she complained her chest hurt yesterday and I took her to her pulminologist, and she isn't breathing well, and has a wheeze. They want to start her on prednisone, but aren't willing to do that without talking to her rheumatologist, and she is out of town, i made sure to call her secretary this morning to make sure she got the message from the gastro doc yesterday as i know she would have called him, and found that she had not, they left the message with the front desk, so it got emailed to her computer, which she won't look at till she gets back on Friday. So her secretary is going to page her and make her aware of what is going on so she can call the gastro doc today. sooooooooo that's the story, I am scared, really scared...........i hate waiting for anything, nevermind stuff like this..............thanks for caring. Aj

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Dear Aj,

I'm very sorry to hear about Holly. I'll keep her in my prayers too. I really hope things get better for your family and yourself.

Keep holding on.

Holly

Hi guys, Holly has been going through a lot the last few months, she has had off and on again, belly and chest pain, the chest pain they believed to be costo condroitis, now she is wheezing, and her breathing is down to 50% ...........in the mean time, with her belly pain, they have down bloodwork and 2 inconclusive ultrasounds, so they did a cat scan. Well, we got the results from the cat scan, she has many and generous lymph nodes in her abdomen. They at this time do not know what they are from. They want to do some stool samples to rule out infection, as they seem to think they could be reactive to some kind of infection. The say they do not appear cancer or tumor like. That's not enough of a definite answer for me. They are moving her bronchoscopy/endoscopy/ph probe to Friday. Oh and she complained her chest hurt yesterday and I took her to her pulminologist, and she isn't breathing well, and has a wheeze. They want to start her on prednisone, but aren't willing to do that without talking to her rheumatologist, and she is out of town, i made sure to call her secretary this morning to make sure she got the message from the gastro doc yesterday as i know she would have called him, and found that she had not, they left the message with the front desk, so it got emailed to her computer, which she won't look at till she gets back on Friday. So her secretary is going to page her and make her aware of what is going on so she can call the gastro doc today. sooooooooo that's the story, I am scared, really scared...........i hate waiting for anything, nevermind stuff like this..............thanks for caring. Aj

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A.J.

My thoughts and prayers are with you at this time keep the faith :):) is sick again cant wait till his rheumy appt he suffers from the stomache pains also are the docs giving you any answers as to what it may be? Once got soooooo ill he'd been admitted to the hopsital the doc thought he had appendicitis, does your daughter or child run a fever? Take care:)

Bye,

Teena,(poly)

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  • 4 weeks later...

Here's hoping the arthritis does stay away and give Holly a break! Four breathing treatments a day - yuck! I know it helps, but I remember when had to do that for his asthma and it would make him so jumpy. I hated it. About the teeth thing, my oldest dd has the same thing. They said it was hereditery but no one we know in either family has that. She has been wearing braces for quite awhile now and should soon get them off and have posts put in to those spaces. The braces are to hold the spots open and move the teeth back as they started to shift forward to fill the empty spaces. Good luck to you and Holly. Michele (mom to 15, pauci & spondy)

-----Original Message-----From: ajaomom@... [mailto:ajaomom@...] Sent: Thursday, January 09, 2003 9:27 AM Subject: HollyHi everyone, I just wanted to let you all know first of all, that i read your posts daily, just find it hard at times to put into words what i want to say. But i am ALWAYS thankful that you guys are here. Second, i just wanted to update you as to where we are in the ongoing saga of holly's health. We still don't have any real answers. One thing that they did find, well two things actually, her lung function has decreased dramatically since August, why?? they don't know. But they did find that she had or has aspergillis in her lungs. Aspergillis is a mold, that is known to reek respiratory havoc, trouble is in treating something else, we already treated the aspergillis, so why are her lung functions so poor?? They don't know. So because she also has some kind of "cold" going on as well, she has about 4 updrafts (breathing treatments) a day. She had a horrible night last night even with that. Needless to say is making me CRAZY!! Okay onto the Third, Her stomach is still bothering her, but not as bad, the carafate seems to have helped that considerably, along with the high dose pred she took for about 3 weeks, that ended yesterday. Another thing they found when they did the endo/bronch in December was that after 6 months she still had many lipid laden macrophage cells in her lungs, so it appears that she is refluxing or aspirating somehow. So because the gi guy here can't figure it out, they are sending us to Boston. We go on the 16th. But we also see the gi guy here on Monday before we go. He seems to be more on the top of the game since i gave him a bunch of crap about the way he handles her care. Unfortunately he is the only gi guy in the area. The upside is that once you get him interested in you, he is one of the best gi docs. Then we go to the dentist yesterday, first of all no cavities, yeah!!!!!!!!!!! But, and lately there always seems to be that but, she seems to have no second teeth, the ones that come in next to your top two teeth. So they said when we go back in 6 months they are going to recheck an xray and then more than likely send us to an orthodontist. Okay, and the last thing, well that i can think of at the moment, is her arthritis, right now, she is off any type of arthritis medicine, as we finished the pred yesterday, she has been off motrin, and mtx since mid December, but on the high dose pred, so cross your fingers, and say your prayers please that her arthritis will cut her some slack right now and stay away!!! Thanks for listening to me vent. Love you guys!!! Aj Holly (9 systemic)

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Hiya AJ and Miss Holly! I hope you all can gets some answers and positive treatment for Holly soon! I'd be rowin the crazy boat myself at this point. I've heard of that lung fungus before but I'll have to pick my mom's brain to see who I know that used to have it...think it was my asthmatic niece actually. I hope Holly and you have a better night tonight ..I'll keep you in my prayers! Tell Holly when she presses the hands of her prayer bear to think of FACES cause we are saying prayers for her too!! Matt said to tell you guys Howdy and are you all going to AJAO Conference this year? Vent all you want AJ I'll do my impression of duct work and just sent it out of existance LOL Love Tree:):):):):):):):):):):) Holly Hi everyone, I just wanted to let you all know first of all, that i read your posts daily, just find it hard at times to put into words what i want to say. But i am ALWAYS thankful that you guys are here. Second, i just wanted to update you as to where we are in the ongoing saga of holly's health. We still don't have any real answers. One thing that they did find, well two things actually, her lung function has decreased dramatically since August, why?? they don't know. But they did find that she had or has aspergillis in her lungs. Aspergillis is a mold, that is known to reek respiratory havoc, trouble is in treating something else, we already treated the aspergillis, so why are her lung functions so poor?? They don't know. So because she also has some kind of "cold" going on as well, she has about 4 updrafts (breathing treatments) a day. She had a horrible night last night even with that. Needless to say is making me CRAZY!! Okay onto the Third, Her stomach is still bothering her, but not as bad, the carafate seems to have helped that considerably, along with the high dose pred she took for about 3 weeks, that ended yesterday. Another thing they found when they did the endo/bronch in December was that after 6 months she still had many lipid laden macrophage cells in her lungs, so it appears that she is refluxing or aspirating somehow. So because the gi guy here can't figure it out, they are sending us to Boston. We go on the 16th. But we also see the gi guy here on Monday before we go. He seems to be more on the top of the game since i gave him a bunch of crap about the way he handles her care. Unfortunately he is the only gi guy in the area. The upside is that once you get him interested in you, he is one of the best gi docs. Then we go to the dentist yesterday, first of all no cavities, yeah!!!!!!!!!!! But, and lately there always seems to be that but, she seems to have no second teeth, the ones that come in next to your top two teeth. So they said when we go back in 6 months they are going to recheck an xray and then more than likely send us to an orthodontist. Okay, and the last thing, well that i can think of at the moment, is her arthritis, right now, she is off any type of arthritis medicine, as we finished the pred yesterday, she has been off motrin, and mtx since mid December, but on the high dose pred, so cross your fingers, and say your prayers please that her arthritis will cut her some slack right now and stay away!!! Thanks for listening to me vent. Love you guys!!! Aj Holly (9 systemic)

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  • 2 months later...
Guest guest

*snickers...cuz she knows her pics aren't posted!* hahaha!

NO way am I gonna post my bootie right now!!!!! LOL NOOOOOOO way !!!

Holly

---okay...then....then....you are goin on my fridge! what do you have

to say waabout that? hmmmmmm? where's your pics? hmmmm......

Kathi (who's just another name) *goes to look for holly's pics*

In , " Holly " <whitmore@s...>

wrote:

> Oh you are sooooooo ON MY FRIDGE!! :-)

>

> Pics are up!

> >

> >

> > Hey everyone...okay..hit me with your best shot!!!! my pics

are

> up

> > and under Kathi. There is ofcourse...not as much of a change

as I

> > expected to happen. I think I really expected to see

more....but

> oh

> > well...it is comin along. Next challenge should be even

better.

> And

> > if it takes 3 challenges...oh well.. Yippeeee an stuff for

me!!!!

> >

> > OH BTW is there a chat tonight?

> > Kathi (who's just another name)

> >

> >

> >

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Guest guest

---ooohhhh man!! not fair in this world!!! when did you finish your

challenge or what week are you on gurl? I posted mine...come on...lol

Kathi (who's just another name)

In , " Holly " <whitmore@s...>

wrote:

> *snickers...cuz she knows her pics aren't posted!* hahaha!

>

> NO way am I gonna post my bootie right now!!!!! LOL NOOOOOOO way

!!!

> Holly

>

> ---okay...then....then....you are goin on my fridge! what do you

have

> to say waabout that? hmmmmmm? where's your pics? hmmmm......

> Kathi (who's just another name) *goes to look for holly's pics*

>

> In , " Holly " <whitmore@s...>

> wrote:

> > Oh you are sooooooo ON MY FRIDGE!! :-)

> >

> > Pics are up!

> > >

> > >

> > > Hey everyone...okay..hit me with your best shot!!!! my

pics

> are

> > up

> > > and under Kathi. There is ofcourse...not as much of a

change

> as I

> > > expected to happen. I think I really expected to see

> more....but

> > oh

> > > well...it is comin along. Next challenge should be even

> better.

> > And

> > > if it takes 3 challenges...oh well.. Yippeeee an stuff for

> me!!!!

> > >

> > > OH BTW is there a chat tonight?

> > > Kathi (who's just another name)

> > >

> > >

> > >

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Guest guest

Gimmie a BREAK...LOL I am just STARTING week 3 and boy the first 2 were a rough

one! LOL.. I did pretty good...until my daughter ended up in the hospital...

I have been trying to stay focused. i sure hope I can post pics at the end of

week 12..... but so far it isnt' looking all that good! LOL

HOLLY

---ooohhhh man!! not fair in this world!!! when did you finish your

challenge or what week are you on gurl? I posted mine...come on...lol

Kathi (who's just another name)

In , " Holly " <whitmore@s...>

wrote:

> *snickers...cuz she knows her pics aren't posted!* hahaha!

>

> NO way am I gonna post my bootie right now!!!!! LOL NOOOOOOO way

!!!

> Holly

>

> ---okay...then....then....you are goin on my fridge! what do you

have

> to say waabout that? hmmmmmm? where's your pics? hmmmm......

> Kathi (who's just another name) *goes to look for holly's pics*

>

> In , " Holly " <whitmore@s...>

> wrote:

> > Oh you are sooooooo ON MY FRIDGE!! :-)

> >

> > Pics are up!

> > >

> > >

> > > Hey everyone...okay..hit me with your best shot!!!! my

pics

> are

> > up

> > > and under Kathi. There is ofcourse...not as much of a

change

> as I

> > > expected to happen. I think I really expected to see

> more....but

> > oh

> > > well...it is comin along. Next challenge should be even

> better.

> > And

> > > if it takes 3 challenges...oh well.. Yippeeee an stuff for

> me!!!!

> > >

> > > OH BTW is there a chat tonight?

> > > Kathi (who's just another name)

> > >

> > >

> > >

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Guest guest

--- OH yeah...you wrote about your daughter in the hospital! now i

remember that. I think you are going to do great! how is your

daughter now by the way? and how old is she? gosh I can't remember

these things!

Kathi (who's just another name)

In , " Holly " <whitmore@s...>

wrote:

> Gimmie a BREAK...LOL I am just STARTING week 3 and boy the first 2

were a rough one! LOL.. I did pretty good...until my daughter ended

up in the hospital... I have been trying to stay focused. i sure

hope I can post pics at the end of week 12..... but so far it isnt'

looking all that good! LOL

> HOLLY

>

> ---ooohhhh man!! not fair in this world!!! when did you finish

your

> challenge or what week are you on gurl? I posted mine...come

on...lol

> Kathi (who's just another name)

>

> In , " Holly " <whitmore@s...>

> wrote:

> > *snickers...cuz she knows her pics aren't posted!* hahaha!

> >

> > NO way am I gonna post my bootie right now!!!!! LOL NOOOOOOO

way

> !!!

> > Holly

> >

> > ---okay...then....then....you are goin on my fridge! what do

you

> have

> > to say waabout that? hmmmmmm? where's your pics? hmmmm......

> > Kathi (who's just another name) *goes to look for holly's

pics*

> >

> > In , " Holly "

<whitmore@s...>

> > wrote:

> > > Oh you are sooooooo ON MY FRIDGE!! :-)

> > >

> > > Pics are up!

> > > >

> > > >

> > > > Hey everyone...okay..hit me with your best shot!!!! my

> pics

> > are

> > > up

> > > > and under Kathi. There is ofcourse...not as much of a

> change

> > as I

> > > > expected to happen. I think I really expected to see

> > more....but

> > > oh

> > > > well...it is comin along. Next challenge should be

even

> > better.

> > > And

> > > > if it takes 3 challenges...oh well.. Yippeeee an

stuff for

> > me!!!!

> > > >

> > > > OH BTW is there a chat tonight?

> > > > Kathi (who's just another name)

> > > >

> > > >

> > > >

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Guest guest

kathi----- she is 2. She is doing much better :-) Back to her onary ol' self!

Holly

--- OH yeah...you wrote about your daughter in the hospital! now i

remember that. I think you are going to do great! how is your

daughter now by the way? and how old is she? gosh I can't remember

these things!

Kathi (who's just another name)

In , " Holly " <whitmore@s...>

wrote:

> Gimmie a BREAK...LOL I am just STARTING week 3 and boy the first 2

were a rough one! LOL.. I did pretty good...until my daughter ended

up in the hospital... I have been trying to stay focused. i sure

hope I can post pics at the end of week 12..... but so far it isnt'

looking all that good! LOL

> HOLLY

>

> ---ooohhhh man!! not fair in this world!!! when did you finish

your

> challenge or what week are you on gurl? I posted mine...come

on...lol

> Kathi (who's just another name)

>

> In , " Holly " <whitmore@s...>

> wrote:

> > *snickers...cuz she knows her pics aren't posted!* hahaha!

> >

> > NO way am I gonna post my bootie right now!!!!! LOL NOOOOOOO

way

> !!!

> > Holly

> >

> > ---okay...then....then....you are goin on my fridge! what do

you

> have

> > to say waabout that? hmmmmmm? where's your pics? hmmmm......

> > Kathi (who's just another name) *goes to look for holly's

pics*

> >

> > In , " Holly "

<whitmore@s...>

> > wrote:

> > > Oh you are sooooooo ON MY FRIDGE!! :-)

> > >

> > > Pics are up!

> > > >

> > > >

> > > > Hey everyone...okay..hit me with your best shot!!!! my

> pics

> > are

> > > up

> > > > and under Kathi. There is ofcourse...not as much of a

> change

> > as I

> > > > expected to happen. I think I really expected to see

> > more....but

> > > oh

> > > > well...it is comin along. Next challenge should be

even

> > better.

> > > And

> > > > if it takes 3 challenges...oh well.. Yippeeee an

stuff for

> > me!!!!

> > > >

> > > > OH BTW is there a chat tonight?

> > > > Kathi (who's just another name)

> > > >

> > > >

> > > >

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Guest guest

Come on, Holly....join us! NONE of us really felt great posting our

pictures, but the motivation is unmatched!!!!!!!!

JOIN US....JOIN US....JOIN US....

>*snickers...cuz she knows her pics aren't posted!* hahaha!

>

> NO way am I gonna post my bootie right now!!!!! LOL NOOOOOOO way !!!

>Holly

>

> ---okay...then....then....you are goin on my fridge! what do you have

> to say waabout that? hmmmmmm? where's your pics? hmmmm......

> Kathi (who's just another name) *goes to look for holly's pics*

>

> In , " Holly " <whitmore@s...>

> wrote:

> > Oh you are sooooooo ON MY FRIDGE!! :-)

> >

> > Pics are up!

> > >

> > >

> > > Hey everyone...okay..hit me with your best shot!!!! my pics

> are

> > up

> > > and under Kathi. There is ofcourse...not as much of a change

> as I

> > > expected to happen. I think I really expected to see

> more....but

> > oh

> > > well...it is comin along. Next challenge should be even

> better.

> > And

> > > if it takes 3 challenges...oh well.. Yippeeee an stuff for

> me!!!!

> > >

> > > OH BTW is there a chat tonight?

> > > Kathi (who's just another name)

> > >

> > >

> > >

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Guest guest

How's your daughter doing? Is she out yet? What's the verdict?

This is the abyss you have to cross this 12 weeks!

debra

> > > > kathi!!!!!!!!!!!! WOW!!!!!!!!!!!!!!!!!!!!!!

> > > > You are an INSPIRATION...you are going on my fridge~!

> > > > Holly

> > > > Pics are up!

> > > >

> > > >

> > > > Hey everyone...okay..hit me with your best shot!!!!

my

> pics

> > are

> > > up

> > > > and under Kathi. There is ofcourse...not as much of a

> change

> > as I

> > > > expected to happen. I think I really expected to see

> > more....but

> > > oh

> > > > well...it is comin along. Next challenge should be

even

> > better.

> > > And

> > > > if it takes 3 challenges...oh well.. Yippeeee an

stuff for

> > me!!!!

> > > >

> > > > OH BTW is there a chat tonight?

> > > > Kathi (who's just another name)

> > > >

> > > >

> > > >

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Guest guest

Dear Holly,

it is so nice to see you posting. I am truly sorry to hear about your sons accident. Thank goodness that they are okay. What an accident. Holly, I didn't realize that you were so close to me. I live only an hour and a half south of Boston. It would be nice to see you perhaps over the summer for lunch or something. Hope that you are well friend. You are always in my thoughts.

Love, Sue #2

-- Re: "my pain" Tricia

so sorry to hear of your pain tricia i hope that you are feeling better i am sorry i have not writtenlife is a messmy health is still the same my 17 year old was in a rollover care accident with his girlfriend he waas run off the road his caar is totalled but thank god they arre okthe car that ran him off the road left wwe are trying to find them he only carried liability and my little six month old niece waas just diagnosed with a rrare foorm of Lukemia she only lives a mile from me but she is in childrens hospital in boston and it is so hard to get their my husband drives and we get losst eveerytimeit sould be stress but they added kllonapen (?) to my medsaat least we live in a small town they are all being great but they all agree my family has such rotten lucki will write in a couple days thanks for not giving up on meloveholly

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  • 4 months later...
Guest guest

Holly...

I can relate to you. I have gone thru all that " stuff " , also. Seems hard to

believe nothing we try seems to help. However, I am optimistic, and will keep

trying.. I have never tried the product you asked about and am curious as to

what others say about it..

Di

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Guest guest

I am glad that I am not alone. Did you try 3Lac?

Holly

Teddyberen@... wrote:

Holly...

I can relate to you. I have gone thru all that " stuff " , also. Seems hard to

believe nothing we try seems to help. However, I am optimistic, and will keep

trying.. I have never tried the product you asked about and am curious as to

what others say about it..

Di

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  • 3 months later...

Dearest AJ, our prayers will be with her and your family. much love, melt

Holly

Hi everyone,

I am just sending a quick post, holly isnt doing very well, she is having a hard time breathing, coughing constantly, her throat hurts and her head hurts, she is miserable, i think she may end up in the hospital. Keep usin your thoughts and prayers, please.

Love and hugs,

Aj and Holly

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Dearest AJ, our prayers will be with her and your family. much love, melt

Holly

Hi everyone,

I am just sending a quick post, holly isnt doing very well, she is having a hard time breathing, coughing constantly, her throat hurts and her head hurts, she is miserable, i think she may end up in the hospital. Keep usin your thoughts and prayers, please.

Love and hugs,

Aj and Holly

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Dear AJ,

I'm so sorry to read that Holly isn't feeling well these days. I do hope that she gets better very soon and that it doesn't get so bad that she needs to be hospitalized. I'm sending warm thoughts to her and hope that she will feel better very soon.

Take care and please let us know how she is doing.

Marilyn

mhogg69@...

----Original Message Follows---- From: ajaomom@...

Subject: Holly

I am just sending a quick post, holly isnt doing very well, she is having a hard time breathing, coughing constantly, her throat hurts and her head hurts, she is miserable, i think she may end up in the hospital. Keep usin your thoughts and prayers, please.

Love and hugs, Aj and Holly Tired of spam? Get advanced junk mail protection with MSN 8.

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Dear AJ,

I'm so sorry to read that Holly isn't feeling well these days. I do hope that she gets better very soon and that it doesn't get so bad that she needs to be hospitalized. I'm sending warm thoughts to her and hope that she will feel better very soon.

Take care and please let us know how she is doing.

Marilyn

mhogg69@...

----Original Message Follows---- From: ajaomom@...

Subject: Holly

I am just sending a quick post, holly isnt doing very well, she is having a hard time breathing, coughing constantly, her throat hurts and her head hurts, she is miserable, i think she may end up in the hospital. Keep usin your thoughts and prayers, please.

Love and hugs, Aj and Holly Tired of spam? Get advanced junk mail protection with MSN 8.

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Hi AJ,

There's nothing worse than knowing that your child is sick and watching her/him suffer. I hope Holly bounces back up without having to go to the hospital. I am sending special thoughts and prayers to both of you. Let us know how she is doing.

Mi. Carmen

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Hi AJ,

There's nothing worse than knowing that your child is sick and watching her/him suffer. I hope Holly bounces back up without having to go to the hospital. I am sending special thoughts and prayers to both of you. Let us know how she is doing.

Mi. Carmen

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