Holly

[Guest guest]

What a day for you. I am hoping Holly does better soon. How awful to

have to wait 8 weeks, but I am glad something is finally being done for

her. I'm praying for Holly and your family, Hugs, Michele

Holly

Hi Everyone,

We got a scary call yesterday from the doctor (ped), he called and

said

Holly's blood work from the day before was alarming. And he was going

to put a

call into her rheumie, if the rheumie still felt as though it wasn't

the

arthritis, then he would be admitting her to the hospital for a full

work up.

Well needless to say, I was a wreck, on the inside of course, the whole

day, we

were finally seen by her rheumie at 2, which turned out to be the

perfect

time, as the morning Motrin had worn off and she was bad, not usually

her worst

time of day, but not the best, the doctor could see that she was barely

able

to move, just laid on the table not talking, had a temp, lost more

weight, I

mean come on this has been going on now for 8 weeks, and its not like

she is

a newly diagnosed kid, but she finally agreed (she had called oncology

and

infectious disease to make sure they agreed) that is was Holly's

Systemic JRA,

though she was presenting completely different then she always

has.........right then and there injected her with 25mgs of mtx, I was

like WOW!! that's

double what she has ever been on, but she said because she is so bad I

want

to hit her hard and fast, and then back off when the time

comes..........then

they admitted her upstairs in the hospital, and gave her iv

steroids...........she feels so much better........they are keeping her

at 25 mgs mtx a week,

and then 40mgs of pred every other day, and Motrin 3 times a day, at

least

for 2 weeks then they are going to repeat labs, the other thought she

has

depending on how she is doing, she may do weekly steroid infusions at

the hospital

until she is under better control. The strangest thing happened while

we

were on the way home late last night, I almost took her back, she kept

complaining that the house lights and street lights were

green...........anybody ever

hear of this, its all back to normal this morning. I have to call the

rheumie

now and tell her how she is. Thanks for being my support the last few

weeks

everyone, I was really scared it was something else, and there is of

course

that one niggle inside me that still has the shadow of doubt....

Luv and hugs,

Aj and Holly 11 yrs (systemic jra dx 9/94)

[Guest guest]

AJ,

Our thoughts and prayers are with you...and a speedy recovery and

control of this disease. Don't be afraid to ask too many questions!

You deserve the right answers!

and Allie (8poly)

<mailto:@blueribbon travel.com>

________________________________

From: ajaomom@... [mailto:ajaomom@...]

Sent: Friday, February 04, 2005 10:51 AM

Subject: Holly

Hi Everyone,

We got a scary call yesterday from the doctor (ped), he called and

said

Holly's blood work from the day before was alarming. And he was going

to put a

call into her rheumie, if the rheumie still felt as though it wasn't

the

arthritis, then he would be admitting her to the hospital for a full

work up.

Well needless to say, I was a wreck, on the inside of course, the whole

day, we

were finally seen by her rheumie at 2, which turned out to be the

perfect

time, as the morning Motrin had worn off and she was bad, not usually

her worst

time of day, but not the best, the doctor could see that she was barely

able

to move, just laid on the table not talking, had a temp, lost more

weight, I

mean come on this has been going on now for 8 weeks, and its not like

she is

a newly diagnosed kid, but she finally agreed (she had called oncology

and

infectious disease to make sure they agreed) that is was Holly's

Systemic JRA,

though she was presenting completely different then she always

has.........right then and there injected her with 25mgs of mtx, I was

like WOW!! that's

double what she has ever been on, but she said because she is so bad I

want

to hit her hard and fast, and then back off when the time

comes..........then

they admitted her upstairs in the hospital, and gave her iv

steroids...........she feels so much better........they are keeping her

at 25 mgs mtx a week,

and then 40mgs of pred every other day, and Motrin 3 times a day, at

least

for 2 weeks then they are going to repeat labs, the other thought she

has

depending on how she is doing, she may do weekly steroid infusions at

the hospital

until she is under better control. The strangest thing happened while

we

were on the way home late last night, I almost took her back, she kept

complaining that the house lights and street lights were

green...........anybody ever

hear of this, its all back to normal this morning. I have to call the

rheumie

now and tell her how she is. Thanks for being my support the last few

weeks

everyone, I was really scared it was something else, and there is of

course

that one niggle inside me that still has the shadow of doubt....

Luv and hugs,

Aj and Holly 11 yrs (systemic jra dx 9/94)

[Guest guest]

Oh my goodness, poor Holly has been thru a horrible week which means

yours has been pretty lousy too.

I wonder how abnormal her lab results must have been to require such

immediate action!

I certainly hope that this will do the trick for Holly and that she

will be feeling better very soon.

(drea 9 systemic)-

-- In , ajaomom@a... wrote:

> Hi Everyone,

> We got a scary call yesterday from the doctor (ped), he called

and said

> Holly's blood work from the day before was alarming. And he was

going to put a

> call into her rheumie, if the rheumie still felt as though it

wasn't the

> arthritis, then he would be admitting her to the hospital for a full

work up.

> Well needless to say, I was a wreck, on the inside of course, the

whole day, we

> were finally seen by her rheumie at 2, which turned out to be the

perfect

> time, as the morning Motrin had worn off and she was bad, not

usually her worst

> time of day, but not the best, the doctor could see that she was

barely able

> to move, just laid on the table not talking, had a temp, lost more

weight, I

> mean come on this has been going on now for 8 weeks, and its not

like she is

> a newly diagnosed kid, but she finally agreed (she had called

oncology and

> infectious disease to make sure they agreed) that is was Holly's

Systemic JRA,

> though she was presenting completely different then she always

> has.........right then and there injected her with 25mgs of mtx, I

was like WOW!! that's

> double what she has ever been on, but she said because she is so

bad I want

> to hit her hard and fast, and then back off when the time

comes..........then

> they admitted her upstairs in the hospital, and gave her iv

> steroids...........she feels so much better........they are keeping

her at 25 mgs mtx a week,

> and then 40mgs of pred every other day, and Motrin 3 times a day,

at least

> for 2 weeks then they are going to repeat labs, the other thought

she has

> depending on how she is doing, she may do weekly steroid infusions

at the hospital

> until she is under better control. The strangest thing happened

while we

> were on the way home late last night, I almost took her back, she

kept

> complaining that the house lights and street lights were

green...........anybody ever

> hear of this, its all back to normal this morning. I have to call

the rheumie

> now and tell her how she is. Thanks for being my support the last

few weeks

> everyone, I was really scared it was something else, and there is of

course

> that one niggle inside me that still has the shadow of doubt....

>

> Luv and hugs,

> Aj and Holly 11 yrs (systemic jra dx 9/94)

>

>

>

[Guest guest]

--AJ,

I am so sorry to read of this... Holly has had Sys JRA for so long,

its frightening that it can get this bad so long after onset.

I cant even begin to imagine how scared you were. I was scared for

you and not wanting to read further for fear of what I might see.

I hope the iv steriods help and she starts to feel better soon.

Please tell her that im thinking of her and i hope shes better very

soon...give her a hug also.

hugs Helen and (7,systemic)

- In , ajaomom@a... wrote:

> Hi Everyone,

> We got a scary call yesterday from the doctor (ped), he called

and said

> Holly's blood work from the day before was alarming. And he was

going to put a

> call into her rheumie, if the rheumie still felt as though it

wasn't the

> arthritis, then he would be admitting her to the hospital for a

full work up.

> Well needless to say, I was a wreck, on the inside of course, the

whole day, we

> were finally seen by her rheumie at 2, which turned out to be the

perfect

> time, as the morning Motrin had worn off and she was bad, not

usually her worst

> time of day, but not the best, the doctor could see that she was

barely able

> to move, just laid on the table not talking, had a temp, lost

more weight, I

> mean come on this has been going on now for 8 weeks, and its not

like she is

> a newly diagnosed kid, but she finally agreed (she had called

oncology and

> infectious disease to make sure they agreed) that is was Holly's

Systemic JRA,

> though she was presenting completely different then she always

> has.........right then and there injected her with 25mgs of mtx, I

was like WOW!! that's

> double what she has ever been on, but she said because she is so

bad I want

> to hit her hard and fast, and then back off when the time

comes..........then

> they admitted her upstairs in the hospital, and gave her iv

> steroids...........she feels so much better........they are

keeping her at 25 mgs mtx a week,

> and then 40mgs of pred every other day, and Motrin 3 times a day,

at least

> for 2 weeks then they are going to repeat labs, the other thought

she has

> depending on how she is doing, she may do weekly steroid infusions

at the hospital

> until she is under better control. The strangest thing happened

while we

> were on the way home late last night, I almost took her back, she

kept

> complaining that the house lights and street lights were

green...........anybody ever

> hear of this, its all back to normal this morning. I have to call

the rheumie

> now and tell her how she is. Thanks for being my support the last

few weeks

> everyone, I was really scared it was something else, and there is

of course

> that one niggle inside me that still has the shadow of doubt....

>

> Luv and hugs,

> Aj and Holly 11 yrs (systemic jra dx 9/94)

>

>

>

[Guest guest]

Aj,

Bless you and your families hearts.What a scare to think something more then

the SoJRA was going on,like that isn't enough.

I can't even imagine what was going through your mind when they involved

cancer specialists.

I wish I could just reach out and give you a big hug in person but know our

love and thoughts are with you always.Just close your eyes and feel the

love,warmth and prayers from all your friends from the list and let us help you

get

through this rough spot.

Try not to worry about the 25mg MTX,many ity,bitty's are on or have been on

that dose.Just try and think of control then taper.Let your mind relax and

think of all the medical stuff Georgina has posted about agressive then wean.

Our love,thoughts and prayers are with you!

Becki and 6 systemic

[Guest guest]

AJ,

Wow, that sounds really scary. You must have been out of your mind. It

sounds crazy that after all this time it would still have to get to this

point to get immediate action. Dear lord, what must her blood work have

said, " PANIC!!!? " for them to react that quickly? I really hope this

terrible flare is brought under control quickly.

[Guest guest]

Hi Aj:

Just wanted to say how glad I am for you that Holly's doctor is finally

taking more decisive action with her treatment. It's odd, isn't it, to

be feeling 'relief' to hear a doctor tell you your child has arthritis?

When we were first told, I had no idea how serious it could be, but I

was so relieved it wasn't a lot of the other things it could have been,

based on the labs. Anyway... I hope now that she is 'official' she'll

soon gain some symptomatic relief from her pain. Good luck to all of

you...

Lynn Young

mom to Mickey, 10, systemic jra since 3

and Kinsey, 8, healthy, great sister to Mickey!

On Feb 4, 2005, at 11:51 AM, ajaomom@... wrote:

Hi Everyone,

   We got a scary call yesterday from the doctor (ped),  he called and

said

Holly's blood work from the day before was alarming. And he  was going

to put a

call into her rheumie, if the rheumie still felt as though it  wasn't

the

arthritis, then he would be admitting her to the hospital for a full 

work up.

Well needless to say, I was a wreck, on the inside of course, the

whole  day, we

were finally seen by her rheumie at 2, which turned out to be the 

perfect

time, as the morning Motrin had worn off and she was bad, not usually 

her worst

time of day, but not the best, the doctor could see that she was 

barely able

to move, just laid on the table not talking, had a temp, lost more 

weight, I

mean come on this has been going on now for 8 weeks, and its not like 

she is

a newly diagnosed kid, but she finally agreed (she had called

oncology  and

infectious disease to make sure they agreed) that is was Holly's

Systemic  JRA,

though she was presenting completely different then she always 

has.........right then and there injected her with 25mgs of mtx, I was

like  WOW!!  that's

double what she has ever been on, but she said because she is  so bad

I want

to hit her hard and fast, and then back off when the time 

comes..........then

they admitted her upstairs in the hospital, and gave her iv 

steroids...........she feels so much better........they are keeping

her at 25  mgs mtx a week,

and then 40mgs of pred every other day, and Motrin 3 times a  day, at

least

for 2 weeks then they are going to repeat labs, the other thought  she

has

depending on how she is doing, she may do weekly steroid infusions at 

the hospital

until she is under better control. The strangest thing happened  while

we

were on the way home late last night, I almost took her back, she kept 

complaining that the house lights and street lights were

green...........anybody  ever

hear of this, its all back to normal this morning. I have to call the 

rheumie

now and tell her how she is. Thanks for being my support the last few 

weeks

everyone, I was really scared it was something else, and there is of 

course

that one niggle inside me that still has the shadow of  doubt....

Luv and hugs,

Aj and Holly 11 yrs (systemic jra dx  9/94)

[Guest guest]

Hi AJ,

I'm so glad they finally DID SOMETHING for Holly. I'm sure you know

that 25mg/1ml of mtx is what a lot of the kids are on, although I

know it must have shocked you that they doubled her dose. It sounds

like she's on a good plan and I hope it pulls her out of this misery.

I have no clue about the green light.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Aw poor Holly. I'm glad that she didn't undo her fundo, that surgery sucked

the first time I doubt she would have wanted to go through it again. Holly is

always in my prayers and I am really hoping she starts feeling better really

soon. I'm glad it has just gotten down to jaw pain but I am hoping that it

all starts feeling better.

Love

(poly jra and spondy, 20)

[Guest guest]

Hi AJ,

Thanks for sending in the update. You guys certainly have had a busy week! I am

so glad that Holly's starting to feel better now. I hope everything continues to

go well and the follow-up appt is a good one. That would have been awful, if the

fundo became undone from all of the coughing. Very glad that wasn't the case.

Please let Holly know that she's in our thoughts and Josh says hi.

Aloha,

Georgina

Holly

Hi all,

I finally have some time to sit down and let you all know whats been going

on here. Holly has had rough week. MOnday night she ended up at the ER with a

non stop cough, she coughed for 2 and a half hours before she finally

stopped, they tried all kinds of things to get her to stop, the numbed her

ears (I

never heard of that before, i guess its a cough center and if you have pain

there it could make you cough persistently), also motrin for the ear pain,

then

they gave her updrafts with a few differents meds in it, then they gave her

tylenol and codeine, and she finally just stopped. Then they sent us home.

They

thought she may have been coughing due to some fumes she may have inhaled

making

a craft at girl scouts, and treated it as a one time thing. Well the next day

we had to follow up with either the ped or the pulminologist, and pulm was

busy, busy, so we made an appt with the ped for 3, and in the meanwhile had a

regular follow up with the rheumie at 2, well about 12:15, she started to

cough

again, and didnt stop, so i called the pulm and said we were either going back

to the er or to see him, and he said bring her here asap, we did, and he

hooked her up to an updraft immed. and kept it running for over an hour and

just

kept dumping in med till she finally stopped coughing an hour and half after

she started. He sent me home with med and instructions what to do, well all

was

fine, till 1 the next afternoon at school, she started again, well i did what

he said and she just wasnt stopping, so i was going to bring her back to the

er as the pulm was out of town for the day, well we got her in the car and

around the corner, and she said she needed the ambulance, her chest was

killing

her besides the constant cough. Well she finally stopped coughing again, and

the

only thing that was resolved that day at the er, is that she had an upper gi

to see if her fundo (the surgery for her reflux) was still intact and it was,

that is a good thing. If it had come undone it could have been the cause of

the cough, she could have been refluxing and dumping into her now relatively

healthy lungs. But that wasnt it, so back to square one. Thursday and Friday

came

and went with no incident. We went to the pulm yesterday for a follow up and

he was very impressed with how she looked. Basically said we could back down

to the as needed meds, and watch closely for the next 2 weeks, that would tell

us more how she is doing then anything.

On the arthritis front, she is still at the 25mg inj mtx, 30 mgs of

prednisolone every other day, and 400 mgs motrin 3 times a day. Other then jaw

pain,

she is doing pretty well with just occasional pain.

Sorry for the long post.....

Aj

[Guest guest]

AJ:

I'm so sorry to hear that Holly has been ill. Hope she is feeling better

soon. She is such a trooper, an amazing girl.

How's your foot?

and Rob 16 Spondy

On Sat, 14 May 2005 10:10:21 EDT ajaomom@... writes:

Hi all,

I finally have some time to sit down and let you all know whats been

going

on here. Holly has had rough week. MOnday night she ended up at the ER

with a

non stop cough, she coughed for 2 and a half hours before she finally

stopped, they tried all kinds of things to get her to stop, the numbed

her ears (I

never heard of that before, i guess its a cough center and if you have

pain

there it could make you cough persistently), also motrin for the ear

pain, then

they gave her updrafts with a few differents meds in it, then they gave

her

tylenol and codeine, and she finally just stopped. Then they sent us

home. They

thought she may have been coughing due to some fumes she may have inhaled

making

a craft at girl scouts, and treated it as a one time thing. Well the next

day

we had to follow up with either the ped or the pulminologist, and pulm

was

busy, busy, so we made an appt with the ped for 3, and in the meanwhile

had a

regular follow up with the rheumie at 2, well about 12:15, she started to

cough

again, and didnt stop, so i called the pulm and said we were either going

back

to the er or to see him, and he said bring her here asap, we did, and he

hooked her up to an updraft immed. and kept it running for over an hour

and just

kept dumping in med till she finally stopped coughing an hour and half

after

she started. He sent me home with med and instructions what to do, well

all was

fine, till 1 the next afternoon at school, she started again, well i did

what

he said and she just wasnt stopping, so i was going to bring her back to

the

er as the pulm was out of town for the day, well we got her in the car

and

around the corner, and she said she needed the ambulance, her chest was

killing

her besides the constant cough. Well she finally stopped coughing again,

and the

only thing that was resolved that day at the er, is that she had an upper

gi

to see if her fundo (the surgery for her reflux) was still intact and it

was,

that is a good thing. If it had come undone it could have been the cause

of

the cough, she could have been refluxing and dumping into her now

relatively

healthy lungs. But that wasnt it, so back to square one. Thursday and

Friday came

and went with no incident. We went to the pulm yesterday for a follow up

and

he was very impressed with how she looked. Basically said we could back

down

to the as needed meds, and watch closely for the next 2 weeks, that would

tell

us more how she is doing then anything.

On the arthritis front, she is still at the 25mg inj mtx, 30 mgs of

prednisolone every other day, and 400 mgs motrin 3 times a day. Other

then jaw pain,

she is doing pretty well with just occasional pain.

Sorry for the long post.....

Aj

[Guest guest]

AJ,

Wow, what an awful week and poor Holly. Her stomach muscles must be

really sore and I hope she didn't break a rib with all that force. I

hope the coughing doesn't return and she's stays on the mend.

Stacia and Hunter 9 systemic, iritis

[Guest guest]

--Aj,

Im sorry to read of Holly recent issues. I hope by the time you read

this ( i know, im painfully behind) she is doing better and has no

more coughing bouts.

Looking forward to meetimg you and Holly in RI.

Hugs Helen and (7,systemic)

- In , ajaomom@a... wrote:

> Hi all,

> I finally have some time to sit down and let you all know whats

been going

> on here. Holly has had rough week. MOnday night she ended up at

the ER with a

> non stop cough, she coughed for 2 and a half hours before she

finally

> stopped, they tried all kinds of things to get her to stop, the

numbed her ears (I

> never heard of that before, i guess its a cough center and if you

have pain

> there it could make you cough persistently), also motrin for the

ear pain, then

> they gave her updrafts with a few differents meds in it, then they

gave her

> tylenol and codeine, and she finally just stopped. Then they sent

us home. They

> thought she may have been coughing due to some fumes she may have

inhaled making

> a craft at girl scouts, and treated it as a one time thing. Well

the next day

> we had to follow up with either the ped or the pulminologist, and

pulm was

> busy, busy, so we made an appt with the ped for 3, and in the

meanwhile had a

> regular follow up with the rheumie at 2, well about 12:15, she

started to cough

> again, and didnt stop, so i called the pulm and said we were

either going back

> to the er or to see him, and he said bring her here asap, we did,

and he

> hooked her up to an updraft immed. and kept it running for over an

hour and just

> kept dumping in med till she finally stopped coughing an hour and

half after

> she started. He sent me home with med and instructions what to do,

well all was

> fine, till 1 the next afternoon at school, she started again, well

i did what

> he said and she just wasnt stopping, so i was going to bring her

back to the

> er as the pulm was out of town for the day, well we got her in the

car and

> around the corner, and she said she needed the ambulance, her

chest was killing

> her besides the constant cough. Well she finally stopped coughing

again, and the

> only thing that was resolved that day at the er, is that she had

an upper gi

> to see if her fundo (the surgery for her reflux) was still intact

and it was,

> that is a good thing. If it had come undone it could have been the

cause of

> the cough, she could have been refluxing and dumping into her now

relatively

> healthy lungs. But that wasnt it, so back to square one. Thursday

and Friday came

> and went with no incident. We went to the pulm yesterday for a

follow up and

> he was very impressed with how she looked. Basically said we could

back down

> to the as needed meds, and watch closely for the next 2 weeks,

that would tell

> us more how she is doing then anything.

> On the arthritis front, she is still at the 25mg inj mtx, 30

mgs of

> prednisolone every other day, and 400 mgs motrin 3 times a day.

Other then jaw pain,

> she is doing pretty well with just occasional pain.

>

> Sorry for the long post.....

>

> Aj

>

>

>

[Guest guest]

Hi Everyone,

Just wanted to let everyone know that holly has had a much better week,

only one smaller episode since last wednesday. Thanks all for your thoughts

and prayers!!!

Luv and hugs,

Aj and Holly (11 yrs old, systemic jra since 9/94)

PS.........Anybody from Southern Florida?? Looks like the kids and I

might be spending sometime (5 weeks) down there this summer.

[Guest guest]

Keep up the great work Holly girl!

Hugs to you and mom for hangin tight!

Luv yall!

Donna

[Guest guest]

-AJ,

Im so gald to read holly is doing better.... keep it up Holly!!!

hugs Helen and (7,systemic)

-- In , ajaomom@a... wrote:

> Hi Everyone,

> Just wanted to let everyone know that holly has had a much

better week,

> only one smaller episode since last wednesday. Thanks all for

your thoughts

> and prayers!!!

>

>

> Luv and hugs,

> Aj and Holly (11 yrs old, systemic jra since 9/94)

>

> PS.........Anybody from Southern Florida?? Looks like the kids

and I

> might be spending sometime (5 weeks) down there this summer.

>

>

>

[Guest guest]

We are very fortunate to have good doctors in North Carolina!

Carol Kurtz

[Guest guest]

We are very fortunate to have good doctors in North Carolina!

Carol Kurtz

[Guest guest]

Holly,

That is a great idea. Sometimes a topic is personal and your suggestion is

perfect. But how do you do that? The moderator has to do it, right? I

hope this can be done. It would make the group messaging so much better.

It would also help avoid so many misunderstandings/arguments that occur

needlessly sometimes.

You're brilliant.

Eternal Blessings,

Meg.

(My Blog: http://360./pink-tulipameritech (DOT) net)

Re: agree with alana

>

>

[Guest guest]

Meg,

I'm pretty sure it has to be a moderator. I think it will work in

too, but not 100% certain. :-)

Blessings,

Holly

>

> From: " Meg W. " <pink-tulip@...>

> Date: 2006/01/23 Mon PM 09:47:05 GST

> < >

> Subject: RE: holly

>

>

[Guest guest]

AJ:

Keeping Holly in thought and prayer. Hoping she feels much better soon!

and Rob 16 Spondy

On Thu, 9 Feb 2006 13:10:07 EST ajaomom@... writes:

Please keep Holly in your thoughts and prayers today...........she woke

with

Belly pain yesterday morning and we ended up at the docs at 2 they were

thinking appendix, sent her for labs, and an Ultrasound and 9 last night,

they

said they didn't find anything conclusive, couldn't find the

appendix............they said to go home, i wasn't comfortable doing

that, so i went to the

lobby and called her ped..........he said he wasn't comfortable either

to go to

the ER and have her seen, we were there until 5 this

morning...........she

had a catscan, they found nothing conlusive there, sent us home saying

it most

likely was not the appendix.........i just got a call from her ped, that

said

the report from the ultrasound says acute

appendicitis................she

needs to be seen today, i am going to make some calls and call you

back...........so that's what i am doing right now is waiting........i

hate

waiting!!!!!!!!!!!!!!!!!!!!! I will post more as i get a

chance.........not

sure whats going to happen now.

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_

(http://www.caringbridge.org/visit/holly)

[Guest guest]

Hi ,

I have been laying in bed for the last 2 hours trying to sleep finally

got up and said the heck with it...........aarrgghh!!!!..........they havent

given her anything for pain, other than the motrin and tylenol that she

normally takes.......she can get fairly comfortable

positionally..............she

atleast is sleeping............and we borrowed one of her friends to spend the

weekend to help keep her mind off things............this friend is so good,

she is like one of the family, she will often in fact say when asked how you

getting here or there.........she will say oh my other mother is bringing me,

lol.........and this weekend we are just gonna be holed up anyway, we are

supposed to get major snow Saturday night into Sunday..........thanks for

thinking of us and keeping her in your prayers.

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)

[Guest guest]

well its good that its not her appendix but scary to wonder what

the " real " problem is. I imagine this could be a hard weekend for

her if they are just playing the " waiting " game to see how she does

or what develops next.

Is she taking lots of hot baths? Have they given her anything to

help control the pain?

I am heading to bed but will be sure to lift up Holly and all of our

other sick kiddos in prayer!

blessings,

(aundrea 10 systemic jra)-

-- In , ajaomom@... wrote:

>

> Okay here I am, sorry its been another long day......she is still

in quite a

> bit of pain......we still have no answers other then the one that

has become

> obvious, it is not her appendix as it would have burst by

> now...............the one thing that did come thru on both the

ultrasound and ct, is that she

> has mesenteric adenopathy...........need to go look more into

that

> one..........what is seems to mean is that she has enlarged

prominent lymph nodes in her

> abdomen..........one place i did read is that it is very commonly

mistaken

> for acute appendicitis............anyone know much about

this???? They

> still arent saying too much (as in Holly tends to be a

complicated kiddo, and

> it takes a while to sort her out, so i am doing the " that mom "

thing and

> finding out what i can to the best of my ability.........Thanks

so much everyone

> for all your thoughts and prayers, i always feel like i can never

truly

> express how it feels to have my " family " here waiting and

worrying with me.....it

> means so much more then i can ever find the right words

for.........you are

> all so awesome!!!!!!

>

> Becki and Alia........... and Caroline are both at the tops

of our

> prayer lists as well...........keep us posted.............give

them gentle hugs

> from us.

>

> Luv and hugs,

> Aj and Holly (12 yrs old, systemic jra since 9/94)

> _www.caringbridge.org/visit/holly_

(http://www.caringbridge.org/visit/holly)

>

>

>

>

[Guest guest]

Hope that Holly made it thru the night ok and that you finally got

some sleep as well. Its nice that she has a good friend to keep her

company...Hopefully, everything will be better today and you can

just sit inside and sip some hot chocolate and watch the snow fall!

(aundrea 10 systemic jra)--

- In , ajaomom@... wrote:

>

> Hi ,

> I have been laying in bed for the last 2 hours trying to sleep

finally

> got up and said the heck with

it...........aarrgghh!!!!..........they havent

> given her anything for pain, other than the motrin and tylenol

that she

> normally takes.......she can get fairly comfortable

positionally..............she

> atleast is sleeping............and we borrowed one of her friends

to spend the

> weekend to help keep her mind off things............this friend

is so good,

> she is like one of the family, she will often in fact say when

asked how you

> getting here or there.........she will say oh my other mother is

bringing me,

> lol.........and this weekend we are just gonna be holed up

anyway, we are

> supposed to get major snow Saturday night into

Sunday..........thanks for

> thinking of us and keeping her in your prayers.

>

>

> Luv and hugs,

> Aj and Holly (12 yrs old, systemic jra since 9/94)

> _www.caringbridge.org/visit/holly_

(http://www.caringbridge.org/visit/holly)

>

>

>

>

[Guest guest]

Hi Aj,

I feel so sad about Holly going through so much awful stuff. You sound like

you're exhausted. When Ezra was being diagnosed they did a ct scan of his

abdomen and found enlarged lymph glands. I know oncologists were asked to

review the scan. In the end, it was decided that was part of the

inflammatory process of the jra. I hope it turns out to be something like

that for Holly. My thoughts are with you. and Ezra, 9 yr old systemic

On 2/10/06 11:44 PM, " ajaomom@... " <ajaomom@...> wrote:

> Thanks .........if you find anything let me know, i need to get some

> sleep, or atleast just try, i havent had much luck in that department.......i

> feel like i am ready to fall down..........

>

>

> Luv and hugs,

> Aj and Holly (12 yrs old, systemic jra since 9/94)

> _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)

>

>

>

>