Re: Jaye

September 27, 2007

Sending hugs to you and Jaye. Sorry to hear about her knee.

Thinking of you,

Tracey and Madi

>

> Well we have been doing so well for quite a while. The only

problems Jaye has had for the past several months, was some

stiffness and occasional minor pains. Well today she called from the

school needing some pain medicine. Her knee is swollen and very

painful. She has was appears to me to be alot of fluid around her

knee.?She is pretty upset because she has a volleyball game today and

is now afraid that she will not be able to play.? We have an

appointment with a new rheumy two weeks from today in Kansas City so

I guess the timing is right or at least close to right but it sure

makes me feel bummed today.

>

> Veri & Jaye 13 poly

>

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September 27, 2007

Veri,I'm so sorry about Jaye. I am glad, however, that you have an appt already set up. Please keep us posted on how she is doing, and whether she was able to play her volleyball match.Take care. and Rob 18 Spondy Jaye > Well we have been doing so well for quite a while. The only > problems Jaye has had for the past several months, was > some stiffness and occasional minor pains. Well today she called > from the school needing some pain medicine. Her knee is swollen > and very painful. She has was appears to me to be alot of fluid > around her knee.?She is pretty upset because she has a > volleyball game today and is now afraid that she will not be > able to play.? We have an appointment with a new rheumy two > weeks from today in Kansas City so I guess the timing is right > or at least close to right but it sure makes me feel bummed today.> > Veri & Jaye 13 poly> ________________________________________________________________________> Email and AIM finally together. You've gotta check out free AOL > Mail! - http://mail.aol.com>

September 27, 2007

Sending hugs to both of you. Let us know if she played today. It's good you have an appointment coming up. Keep us posted.

Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Jaye

Well we have been doing so well for quite a while. The only problems Jaye has had for the past several months, was some stiffness and occasional minor pains. Well today she called from the school needing some pain medicine. Her knee is swollen and very painful. She has was appears to me to be alot of fluid around her knee. She is pretty upset because she has a volleyball game today and is now afraid that she will not be able to play. We have an appointment with a new rheumy two weeks from today in Kansas City so I guess the timing is right or at least close to right but it sure makes me feel bummed today.Veri & Jaye 13 poly

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October 19, 2007

Veri, can you take her to the urgent care or ER to have her checked out, since she has the history of seizures?I will be praying for Jaye tonight. I hope she has a restful sleep. Please post tomorrow and let us know how she is doing. veristroud@... wrote: Just a quick note to ask for prayer for Jaye. This week has been a rough week for her. Monday she was hurting and stiff and unable to get out

of bed. Tuesday she felt pretty good and went to school, by Tuesday afternoon before school was out she was in pain and not feeling well. Wednesday she spent the day in bed again. Thursday she was ok, stiff and sore but able to get up and go to school. Today, again she got up and went to school and really had a good day. This evening around 6:30 p.m. she told me she was dizzy. We were getting ready to eat pizza and she felt like she could not eat. Dizzy and nausious was all she said. She went to lay down for about 20 minutes and then got up thinking she was feeling better but only lasted about 10 minutes and then she headed back to bed. Her eyes look odd and she was scared. She was so near tears and said she was afraid that she was going to have a seizure. She went back to bed and is still there. I keep checking on her and she is not sleeping but does not feel right. Please pray for her and for me. I am not sure what to do for her or how to help her feel better. I expect

she will sleep in my room tonight so I can keep an eye on her. It has been over an hour and a half and I pray she feels better soon or at least by morning. Thanks so much and I will try to send an update tomorrow. Veri ************************************** See what's new at http://www.aol.com __________________________________________________

October 20, 2007

Veri:

I did not see this last night. I hope she had good night. Please let us know how she is today! I'm praying for her.

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Jaye

Just a quick note to ask for prayer for Jaye. This week has been a rough week for her. Monday she was hurting and stiff and unable to get out of bed. Tuesday she felt pretty good and went to school, by Tuesday afternoon before school was out she was in pain and not feeling well. Wednesday she spent the day in bed again. Thursday she was ok, stiff and sore but able to get up and go to school. Today, again she got up and went to school and really had a good day. This evening around 6:30 p.m. she told me she was dizzy. We were getting ready to eat pizza and she felt like she could not eat. Dizzy and nausious was all she said. She went to lay down for about 20 minutes and then got up thinking she was feeling better but only lasted about 10 minutes and then she headed back to bed. Her eyes look odd and she was scared. She was so near tears and said she was afraid

that she was going to have a seizure. She went back to bed and is still there. I keep checking on her and she is not sleeping but does not feel right. Please pray for her and for me. I am not sure what to do for her or how to help her feel better. I expect she will sleep in my room tonight so I can keep an eye on her. It has been over an hour and a half and I pray she feels better soon or at least by morning. Thanks so much and I will try to send an update tomorrow. Veri************ ********* ********* ********See what's new at http://www.aol. com

October 20, 2007

,

I did not take her to be checked. All they would have done was to refer us to her neurologist and we are already scheduled for an EEG on November 1st. All wanted to do was to go to bed and sleep. I know that there could be many explainations for how she was feeling. She could be getting a virus and that mixed with her JRA could make her exhausted. I just know that she was so afraid that she was having a seizure. The look in her eyes was so sad for me to see. She told me she was scared. She has been seizure free for 3 1/2 years and off all seizure med's for 18 months. This is one of the things we will deal with for the rest of her life probably. Just always knowing that she could at any time have another seizure. It is so sad, she hates hurting and being stiff from the JRA. She does not like the swollen joints and the exhaustion she gets from it. But she would rather deal with that then to have to go back on her seizure med's.

I think she went to bed at 7 last night and then I woke her up a couple of times to check on her. At 10 when I went to bed, I woke her up again and she just said she felt so very tired. It was so different from her regular tired. Anyway she slept in my room last night and she slept sound all night. She is still in bed this morning and I am going to go and check on her in a couple of minutes. I will post later. Please pray for her, she is so scared about this.

Veri & Jaye

Re: Jaye

Veri,

can you take her to the urgent care or ER to have her checked out, since she has the history of seizures?

I will be praying for Jaye tonight. I hope she has a restful sleep. Please post tomorrow and let us know how she is doing.

veristroudaol wrote:

Just a quick note to ask for prayer for Jaye. This week has been a rough week for her. Monday she was hurting and stiff and unable to get out of bed. Tuesday she felt pretty good and went to school, by Tuesday afternoon before school was out she was in pain and not feeling well. Wednesday she spent the day in bed again. Thursday she was ok, stiff and sore but able to get up and go to school. Today, again she got up and went to school and really had a good day. This evening around 6:30 p.m. she told me she was dizzy. We were getting ready to eat pizza and she felt like she could not eat. Dizzy and nausious was all she said. She went to lay down for about 20 minutes and then got up thinking she was feeling better but only lasted about 10 minutes and then she headed back to bed. Her eyes look odd and she was scared. She was so near tears and said she was afraid that she was going to have a seizure. She went back to bed and is still there. I keep checking on her and she is not sleeping but does not feel right. Please pray for her and for me. I am not sure what to do for her or how to help her feel better. I expect she will sleep in my room tonight so I can keep an eye on her. It has been over an hour and a half and I pray she feels better soon or at least by morning. Thanks so much and I will try to send an update tomorrow. Veri

**************************************

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October 20, 2007

-prayer for jaye, Hopefully its just a quick bug thats knocked

her for a loop this week and shes feeling better this morning.

let us know how she is when you get a chance.

hugs Helen and (10,systemic)

-- In , veristroud@... wrote:

>

> Just a quick note to ask for prayer for Jaye. This week has

been a

> rough week for her. Monday she was hurting and stiff and unable to

get out of

> bed. Tuesday she felt pretty good and went to school, by Tuesday

afternoon before

> school was out she was in pain and not feeling well. Wednesday she

spent the

> day in bed again. Thursday she was ok, stiff and sore but able to

get up and

> go to school. Today, again she got up and went to school and really

had a good

> day. This evening around 6:30 p.m. she told me she was dizzy. We

were getting

> ready to eat pizza and she felt like she could not eat. Dizzy and

nausious was

> all she said. She went to lay down for about 20 minutes and then

got up

> thinking she was feeling better but only lasted about 10 minutes

and then she

> headed back to bed. Her eyes look odd and she was scared. She was

so near tears and

> said she was afraid that she was going to have a seizure. She went

back to

> bed and is still there. I keep checking on her and she is not

sleeping but does

> not feel right. Please pray for her and for me. I am not sure what

to do for

> her or how to help her feel better. I expect she will sleep in my

room tonight

> so I can keep an eye on her. It has been over an hour and a half

and I pray

> she feels better soon or at least by morning. Thanks so much and I

will try to

> send an update tomorrow. Veri

>

> **************************************

> See what's new at http://www.aol.com

>

October 20, 2007

Thank you all for your prayers. Jaye has done very well today. No signs of any problems yea. She was up at 8 a.m. this morning and said she just laid in bed for about an hour because she was not sure how she felt. I'm not sure what that is all about cause she normally will at least get up to sit in front of the television on Saturday morning. She just did not want to. I am still concerned that it was some sort of seizure last night but do not know for sure. It is just too much like the past creeping up. Today, I asked Jaye what she was thinking about last night and she just really did not know how to answere me. All she would say was "I hope it was not a seizure". So I know where her fears are also. Tomorrow I guess we are supposed to get rain agian. I've been busy enough to not pay attention to the news but I was informed by a couple of people today that we are in for more rain. Jaye has a five day weekend so she will have til Thursday to rest before she has to go do anything.

Veri & Jaye 13 poly

Re: Jaye

-prayer for jaye, Hopefully its just a quick bug thats knocked

her for a loop this week and shes feeling better this morning.

let us know how she is when you get a chance.

hugs Helen and (10,systemic)

-- In , veristroud@... wrote:

>

> Just a quick note to ask for prayer for Jaye. This week has

been a

> rough week for her. Monday she was hurting and stiff and unable to

get out of

> bed. Tuesday she felt pretty good and went to school, by Tuesday

afternoon before

> school was out she was in pain and not feeling well. Wednesday she

spent the

> day in bed again. Thursday she was ok, stiff and sore but able to

get up and

> go to school. Today, again she got up and went to school and really

had a good

> day. This evening around 6:30 p.m. she told me she was dizzy. We

were getting

> ready to eat pizza and she felt like she could not eat. Dizzy and

nausious was

> all she said. She went to lay down for about 20 minutes and then

got up

> thinking she was feeling better but only lasted about 10 minutes

and then she

> headed back to bed. Her eyes look odd and she was scared. She was

so near tears and

> said she was afraid that she was going to have a seizure. She went

back to

> bed and is still there. I keep checking on her and she is not

sleeping but does

> not feel right. Please pray for her and for me. I am not sure what

to do for

> her or how to help her feel better. I expect she will sleep in my

room tonight

> so I can keep an eye on her. It has been over an hour and a half

and I pray

> she feels better soon or at least by morning. Thanks so much and I

will try to

> send an update tomorrow. Veri

>

> **************************************

> See what's new at http://www.aol.com

>

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October 20, 2007

VeriI am so relieved to hear that Jaye is feeling better. I hope that it was not seizure activity and that the extra time off will get her to feeling better. I hope she also feels better emotionally, what a huge thing to have hanging over her head at such a young age...I've had her on my mind all day.

Take care

and Rob 18 Spondy Re: Jaye> > > > > > > > -prayer for jaye, Hopefully its just a quick bug thats > knocked > her for a loop this week and shes feeling better this morning.> > let us know how she is when you get a chance.> > hugs Helen and (10,systemic)> > -- In , veristroud@... wrote:> >> > Just a quick note to ask for prayer for Jaye. This week > has > been a > > rough week for her. Monday she was hurting and stiff and > unable to > get out of > > bed. Tuesday she felt pretty good and went to school, by > Tuesday > afternoon before > > school was out she was in pain and not feeling well. Wednesday > she > spent the > > day in bed again. Thursday she was ok, stiff and sore but able > to > get up and > > go to school. Today, again she got up and went to school and > really > had a good > > day. This evening around 6:30 p.m. she told me she was dizzy. > We > were getting > > ready to eat pizza and she felt like she could not eat. Dizzy > and > nausious was > > all she said. She went to lay down for about 20 minutes and > then > got up > > thinking she was feeling better but only lasted about 10 > minutes > and then she > > headed back to bed. Her eyes look odd and she was scared. She > was > so near tears and > > said she was afraid that she was going to have a seizure. She > went > back to > > bed and is still there. I keep checking on her and she is not > sleeping but does > > not feel right. Please pray for her and for me. I am not sure > what > to do for > > her or how to help her feel better. I expect she will sleep in > my > room tonight > > so I can keep an eye on her. It has been over an hour and a > half > and I pray > > she feels better soon or at least by morning. Thanks so much > and I > will try to > > send an update tomorrow. Veri> > > > > > > > > > **************************************> > See what's new at http://www.aol.com> >> > > > > > ________________________________________________________________________> Email and AIM finally together. You've gotta check out free AOL > Mail! - http://mail.aol.com>

October 21, 2007

Veri:

Glad yesterday went better for her. I will pray that this was just a fluke of some kind and she continues to feel good. Keep us posted, we are thinking of all you.

Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Re: Jaye

-prayer for jaye, Hopefully its just a quick bug thats knocked her for a loop this week and shes feeling better this morning.let us know how she is when you get a chance.hugs Helen and (10,systemic)-- In @group s.com, veristroud@. .. wrote:>> Just a quick note to ask for prayer for Jaye. This week has been a > rough week for her. Monday she was hurting and stiff and unable to get out of > bed. Tuesday she felt pretty good and went to school, by Tuesday afternoon before > school was out she was in pain and not feeling well. Wednesday she spent the > day in bed again. Thursday she was ok, stiff and sore but able to get up and > go to school. Today, again she got up and went to school and really had a

good > day. This evening around 6:30 p.m. she told me she was dizzy. We were getting > ready to eat pizza and she felt like she could not eat. Dizzy and nausious was > all she said. She went to lay down for about 20 minutes and then got up > thinking she was feeling better but only lasted about 10 minutes and then she > headed back to bed. Her eyes look odd and she was scared. She was so near tears and > said she was afraid that she was going to have a seizure. She went back to > bed and is still there. I keep checking on her and she is not sleeping but does > not feel right. Please pray for her and for me. I am not sure what to do for > her or how to help her feel better. I expect she will sleep in my room tonight > so I can keep an eye on her. It has been over an hour and a half and I pray > she feels better soon or at least by

morning. Thanks so much and I will try to > send an update tomorrow. Veri> > > > > ************ ********* ********* ********> See what's new at http://www.aol. com>

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January 22, 2008

Wish things could be better for Jay. That constant pain is so

cruel. And am terribly sorry about her granddad. Prayers, Hadley

(and Isabelle, 4 yrs.)

>

> Jaye has been doing ok. Today, we got a call that her dad's

father passed away. She is pretty close to her grandparents and so

she is really pretty bummed out. She is in pain nearly every day but

not so bad that she can not keep going. She has only missed one day

of school this month due to her joints. She gets frustrated some days

because the pain moves from one place to another. This month her main

problem has been pain in her back, sholders and neck. She seems to do

better when it is her knees and ankles because I think she is used to

those areas hurting. For her knees & ankles they seem to feel better

when she is not walking so she gets relief. It seems that her back

just bothers her all day.?The stairs are bothering her again and of

course she refused to use the elevator at school. But she is doing so

good at taking her meds. She is only on Naproxin and

Hydroxichloroquine for now. We have only been back on they

Hydroxichloroquine for about six weeks and I know it takes a long

time to do the job it is supposed to do. She does not complain about

being stiff but I can tell when she is getting around in the mornings

that she is most often stiff. I think stiff is just so normal now

that she does not even realize it is there. Because when I ask she

will say no, not really and then if I ask why then are you moving so

slow she will think about it and say well maybe I am stiff.

Fortunatly she is not in severe pain. Her pain is just constant. We

have had so much up and down with the temperature that I just want it

to stay one temp. But above 20. Each time it goes below 20 degrees

here the water to my toilet freezes and that is a royal pain in the

rear. I hate being cold but really think that if she felt better with

the cold I would adjust and be more accepting of it.?

> ?

> Veri & Jaye 13 poly (will be 14 in 9 days)

>

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January 22, 2008

I am sorry to read of 's grandfather's passing. I will keep the

family in my prayers.

I cannot remember if has any physical therapy, but if not she may

find it helpful, especially for her back. With having the spondy

caused problems in his back and going to pt and learning how to stretch

really helped. He was able to touch his toes again after being so stiff

that he could not. Using a heated mattress pad may help, as might taking

warm shower. I hope that can find some relief soon. It is just

awful that she is constant pain. Michele ( 20, spondy)

________________________________

From: [mailto: ] On

Behalf Of veristroud@...

Sent: Sunday, January 20, 2008 9:20 PM

Subject: Jaye

Jaye has been doing ok. Today, we got a call that her dad's

father passed away. She is pretty close to her grandparents and so she

is really pretty bummed out. She is in pain nearly every day but not so

bad that she can not keep going. She has only missed one day of school

this month due to her joints. She gets frustrated some days because the

pain moves from one place to another. This month her main problem has

been pain in her back, sholders and neck. She seems to do better when it

is her knees and ankles because I think she is used to those areas

hurting. For her knees & ankles they seem to feel better when she is not

walking so she gets relief. It seems that her back just bothers her all

day.?The stairs are bothering her again and of course she refused to use

the elevator at school. But she is doing so good at taking her meds. She

is only on Naproxin and Hydroxichloroquine for now. We have only been

back on they Hydroxichloroquine for about six weeks and I know it takes

a long time to do the job it is supposed to do. She does not complain

about being stiff but I can tell when she is getting around in the

mornings that she is most often stiff. I think stiff is just so normal

now that she does not even realize it is there. Because when I ask she

will say no, not really and then if I ask why then are you moving so

slow she will think about it and say well maybe I am stiff. Fortunatly

she is not in severe pain. Her pain is just constant. We have had so

much up and down with the temperature that I just want it to stay one

temp. But above 20. Each time it goes below 20 degrees here the water to

my toilet freezes and that is a royal pain in the rear. I hate being

cold but really think that if she felt better with the cold I would

adjust and be more accepting of it.?

?

Veri & Jaye 13 poly (will be 14 in 9 days)

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January 22, 2008

hi Veri,

please tell Jaye I am sorry about the loss of her

grandfather....grandparents often hold a most special place in our lives and are

often the first loss we experience.

Is there another name for the Hydroxichloroquine? I am not familiar with it.

THe cold must be so difficult - it gets below 60 here and and I are

hurting (don't laugh please) - tomorrow we will be in Michigan and I am anxious

about the effects...the family is joking that people will have to just roll us

where we need to go as we won't be able to move we will be so bundled....

Anyway, it sound like Jaye is your typical teen, not wanting to use the

elevator, even though it would be easier with her arthritis, as she wants to be

like all her peers....as far as the stiffness and constant pain, it is amazing

what our kids become accustomed to, isn't it? I do hope Jaye's meds

start helping her more and she starts feeling better soon.

Please give her our best.

(, 17, poly, cvid, migraines)

veristroud@... wrote:

Jaye has been doing ok. Today, we got a call that her dad's father

passed away. She is pretty close to her grandparents and so she is really pretty

bummed out. She is in pain nearly every day but not so bad that she can not keep

going. She has only missed one day of school this month due to her joints. She

gets frustrated some days because the pain moves from one place to another. This

month her main problem has been pain in her back, sholders and neck. She seems

to do better when it is her knees and ankles because I think she is used to

those areas hurting. For her knees & ankles they seem to feel better when she is

not walking so she gets relief. It seems that her back just bothers her all

day.?The stairs are bothering her again and of course she refused to use the

elevator at school. But she is doing so good at taking her meds. She is only on

Naproxin and Hydroxichloroquine for now. We have only been back on they

Hydroxichloroquine for about six weeks and I know

it takes a long time to do the job it is supposed to do. She does not complain

about being stiff but I can tell when she is getting around in the mornings that

she is most often stiff. I think stiff is just so normal now that she does not

even realize it is there. Because when I ask she will say no, not really and

then if I ask why then are you moving so slow she will think about it and say

well maybe I am stiff. Fortunatly she is not in severe pain. Her pain is just

constant. We have had so much up and down with the temperature that I just want

it to stay one temp. But above 20. Each time it goes below 20 degrees here the

water to my toilet freezes and that is a royal pain in the rear. I hate being

cold but really think that if she felt better with the cold I would adjust and

be more accepting of it.?

?

Veri & Jaye 13 poly (will be 14 in 9 days)

__________________________________________________________

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August 3, 2009

I know many like to keep JRA kids as normal as possible, but have you considered

homeschooling Jaye? I know that my DD, who already struggles in school

would have missed a lot of last semester due to the pain, and she certainly

would have asked to stay home many times. We started HS today, and she is

flaring from this morning. Her flares don't seem to be nearly as bad as they

were, and not nearly as bad as 's. I can't see how JRA kids can do regular

school when they aren't in remission, but that is because we don't have to make

it work. Christiaan has been HSed all of her life, so she knows no difference.

Her friends are at church and we do play dates. I know probably has full

time friends that she wants to see. Christiaan is stressing about not feeling

well enough to participate in VBS tonight.

Anyway, I just thought I would throw that out there. I know that the PS can even

send home a tutor during her worst times, or even have her do internet school

through the PS; they provide everything, books, even a laptop. You just need to

have internet, which obviously you have. Kymberli

>

> I guess I posted to the wrong address yesterday evening.? I must have been

tired.? So I will copy what I posted last night and add a bit of today.

>

> Jaye has just finished spending a week with her Aunt Jaye in

Indianapolis. She was flaring before she went and things got better before the

trip. She had a pretty good time and not alot of pain while she was there. She

was totally exhausted most every day but her pain level was ok.? She seemed to

have a wonderful time. I picked her up at the airport in Kansas City this

morning and then we spent the day at Worlds of Fun.? Tonight, she can not hardly

move.? I noticed early on in the day that she was limping but she would not

stop. She had to rest many times but then got back up and kept going.? She had?a

wonderful time and at 8:45 she said she had to go back to the motel.? We left

the rest of our group at the amusement park and are here now where she is

soaking in a hot bath.? There are too many people in the hot tub at the motel

and she did not want to walk back down there anyway.? Yesterday Jaye

spent several hours at a go cart place and so she was already set up for a rough

time.? Anyway she is going to rest now and probably sleep very well tonight.? I

hate seeing my girl in so much pain.? Oh, yeah, yesterday I got a letter from

the pain managment clinic that the rheumy referred us to and they have turned us

down, said we need to go elsewhere. grrrrr. I guess I will call the rheumy next

week and see what they think.? The rheumy was already upset that they did not

have us scheduled yet when I talked to them a couple of weeks ago so not sure

what he will say about this detour.?GRRRRR

>

> Well today Jaye is not doing so well.? She slept til after 10 this

morning and then had to sit in a vehicle three hours to get home. She came home

and promptly went to bed to sleep.? She is worried that she will not be able to

babysit tomorrow.? I told her if not, they understand and will find an alternate

for the day. She generally walks over to pick up the boy she babysits and then

they come back home or walk to the park or library.? She said no walking

tomorrow so we will see.? Her feet are not swollen real bad but they are swollen

and she can hardly even?touch them they hurt so bad.? She must get better soon,

school starts in a week and a half and she has to walk alot at school, that will

worry her.

>

> Veri & Jaye 15 poly

>

August 3, 2009

I agree with hoping that it's just a quick bug. It's so hard when they have not

been actively flaring for a while and it pops up out of the blue. I do believe

that my little bean is having her first flare in a while (minus the swollen

feet). At therapy today she couldn't get the normal range on her index fingers

and thumbs, and her toes wouldn't bend. We are hoping that's as far as it goes.

I hope that Jaye feels better in the morning.

le & (7) RF+ poly JRA

> >

> > I guess I posted to the wrong address yesterday evening.? I must have been

tired.? So I will copy what I posted last night and add a bit of today.

> >

> > Jaye has just finished spending a week with her Aunt Jaye in