Holly

[Guest guest]

Hi guys,

well we have made it through the weekend.........she is still in pain,

but had a nice weekend with her friend over........i am going to call the ped

tomorrow and see what he wants to do..........also we see the rheumie on

tuesday........i will keep you all posted..........

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]

Aj - How is Holly feeling today? Any more news or more importantly -

ANSWERS??? We're still saying a prayer for you guys!

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On

Behalf Of ajaomom@...

Sent: Friday, February 10, 2006 10:23 PM

Subject: holly

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]

Hi Alia,

We have no answers.........still has pain in her side but it has

decreased some............we were back at the peds yesterday thinking she had

an ear

infection............they were clear.........she is not eating great again,

has lost 1.5 lbs and tonight had jaw pain and then ear pain and then a

headache........i am leaning now toward a major flare............the ped is

keeping

an eye on her right now trying to come up with answers.......

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]

AJ - What a bummer. What a rough time she has been going through! I hate

winters. It seems that most of the kids on this list are struggling

right now. I am so grateful for the one's that are catching a break!!!

Please keep us posted!!

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On

Behalf Of ajaomom@...

Sent: Friday, February 17, 2006 9:02 PM

Subject: Re: holly

Hi Alia,

We have no answers.........still has pain in her side but it has

decreased some............we were back at the peds yesterday thinking

she had an ear

infection............they were clear.........she is not eating great

again,

has lost 1.5 lbs and tonight had jaw pain and then ear pain and then a

headache........i am leaning now toward a major flare............the ped

is keeping

an eye on her right now trying to come up with answers.......

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]

AJ: How is Holly doing? ne said she had emailed her last week. I was

just wondering from one mom to another how she was. I know the girls don't

really talk about their JRA but it is nice that they were able to connect.

I hope you can make it to the conference but if I not I totally understand. We

have never been before and we were actually going to drive it but I got a bonus

at work so we are using it to fly. Funny how sometimes things just land in your

hands

Let me know how things are going when you get a chance. We have a little

something for her that we are going to try to get out in the mail tomorrow.

I'll let you know when it's sent so she can start watching for it.

take care - Kim & ne Summerhill (12 JRA)

[Guest guest]

Fran, I am clueless about what I am doing on this site...LOL!!! What a computer

dummy I am! Anyway, i need your help to get the word out about the Nino Fund 5K

Run on July 29th. It would be awesome to have as many PFS families there as

possible. There will be alot of media, and as you know, the whole goal of The

Nino Fund is to raise awareness and FUNDS to research and FIGHT this

disease.....anyway, how can I/you/we share it with the families on your site?

Or, can you just let people know abt the Nino Fund website(www.a-journey.com)

and they may contact me if they'd like a registration form for the run??....tell

me what would be best for you!!! Thank you for all you do. Thanks for your

help with this.

Love and prayer, Lori

Fran Bulone <fbulone@...> wrote:

Holly,

I WISH You lived near me. I live south of Charlotte NC. In Union County. I

am happy we got the ESY however the amount of time in not sufficient and if

needed next year I will push as hard to get more hours.

I WISH YOU WERE CLOSE TO ME!! I am contacted teachers at ph's school who

tutor and the average price per hour is $40.00. It is so expensive!! The

teacher I really want is swamped with kids but I am hoping she will add 2

hours a week for the remainder of the summer. I am not sure how we will pay

for this but he really NEEDS more help with reading. He is struggling at

level 16 which is the level needed for promotion into 2nd grade. The school

said he made it but honestly he still reads comfortably at a level 10-12. He

struggle with 14-16.

He needs basic skills like vowel sounds and phonetics. The poor kid can do

word lists . start with at, then list cat, bat, fat etc. But for some reason

I gather developmentally when you put the words into context in a book he

struggles to identify them.

He use to like to read and for me to read to him and he is getting a

distaste for it all.

Now he will do math workbooks all day if I let him. But when it comes to

good old reading and writing. he stuggles.

Anyway, I think you are pretty far from me!! Otherwise I would be knocking

at your door.

God Bless

Fran

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

_._,___

[Guest guest]

>>>Fran, I am clueless about what I am doing on this site...LOL!!! What a

computer dummy I am! Anyway, i need your help to get the word out about the

Nino Fund 5K Run on July 29th. It would be awesome to have as many PFS

families there as possible. There will be alot of media, and as you know,

the whole goal of The Nino Fund is to raise awareness and FUNDS to research

and FIGHT this disease.....anyway, how can I/you/we share it with the

families on your site? Or, can you just let people know abt the Nino Fund

website(www.a-journey.com) and they may contact me if they'd like a

registration form for the run??....tell me what would be best for you!!!

Thank you for all you do. Thanks for your help with this.

Love and prayer, Lori>>>

Lori

You just did it!

Also your website is at this site under the links. Has been for months!

God B less

Fran

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

[Guest guest]

Fran, AWESOME! So, everything we type is available for the whole site? Thank

you, thank you!!! Have a great day. God Bless. Lori

Fran Bulone <fbulone@...> wrote: >>>Fran, I am clueless

about what I am doing on this site...LOL!!! What a

computer dummy I am! Anyway, i need your help to get the word out about the

Nino Fund 5K Run on July 29th. It would be awesome to have as many PFS

families there as possible. There will be alot of media, and as you know,

the whole goal of The Nino Fund is to raise awareness and FUNDS to research

and FIGHT this disease.....anyway, how can I/you/we share it with the

families on your site? Or, can you just let people know abt the Nino Fund

website(www.a-journey.com) and they may contact me if they'd like a

registration form for the run??....tell me what would be best for you!!!

Thank you for all you do. Thanks for your help with this.

Love and prayer, Lori>>>

Lori

You just did it!

Also your website is at this site under the links. Has been for months!

God B less

Fran

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

[Guest guest]

not all strains are suited for all antibiotics. There are some antibiotics that

are made specifically for gram positive or gram negative bacteria. My husband's

daily prophylactic is for sinusitis. That is his biggest nemesis. Macey's

daily antibiotic is for pneumonia coverage. Obviously they're not the same.

Then there are broad spectrum antibiotics like Rocephin that just cover the

gamut for a short while until sensitivity testing can come back and cultures

grow out.

I'm a big believer in culturing infections. if only to prove that they're

bacterial or viral or even fungal sometimes.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://members.cox.net/maceyh

[Guest guest]

I could have swore she was getting a sinus infection. But the doctor said it's

just a clear runny nose. She goes today for blood work to see if she has a PID.

[Guest guest]

I would have waited longer than 6 months, but as Anita mentioned, Isabella

was literally grabbing food off our plates when she was 5 months old. She

sucked on ribs and apples and then at 6 months we gave her solids because

there was no way she was waiting any longer! I agree it is all very

individual.

C

_____

From: Vaccinations [mailto:Vaccinations ] On

Behalf Of Anne

Sent: Tuesday, April 10, 2007 6:41 PM

Vaccinations

Subject: Holly

I waited till 10 months and I actually lost a friend over it. She was

appalled that I wasn't sticking my child in a high chair and forcing food in

his mouth.

I'm sure I will get the same flack with my son he is 3 months and I plan on

waiting to feed him also and people always have to give there worthless

advice its SO annoying

Anne

Anita Durney <mydurney (DOT) <mailto:mydurney%40> com> wrote:

That may be true, but some children are quite curious and very much want to

begin eating solids at 6 mos or soon after; it's all very individual. C's

Isabella was interested in sucking on mom's rib bones quite early if I

remember correctly. Others show no or little interest at several mos and are

perfectly content with mama's milk only for a longer period of

time.....Anita

mensrea320aol (DOT) <mailto:mensrea320%40aol.com> com wrote:

In a message dated 4/10/2007 3:36:13 PM Eastern Daylight Time,

ingrid_schebesch@ <mailto:ingrid_schebesch%40btinternet.com> btinternet.com

writes:

a need for solids arises at

around 6 months for a baby

I actually think a baby doesn't need solids for at least the first year of

life. I started on solids at 11 months. I just gave her tastes of

things, so she could experience different textures. She didn't start eating

for

substance until after a year old. I had so many people ask me when I was

going to start feeding her solids. It was getting annoying. She was/is

thriving so much on breastmilk. That's just my opinion though.

Holly

************************************** See what's free at http://www.aol.

<http://www.aol.com.> com.

[Guest guest]

Holy crap, even the CDC says breastmilk should be the food for the 1st

year, with solids just to experiment with taste and texture. I don't

have the link, but if you do an internet search for breastfeeding and

CDC, you'll probably get there. One of the few things the CDC says that

I feel good about.

Your friends are using really, really outdated info. I'm sure Ingrid or

Sue will have something to say about this.

-Angie, who was formula-fed and now look at what a mess I am!

On Tuesday, April 10, 2007, at 09:41 PM, Anne wrote:

> I waited till 10 months and I actually lost a friend over it. She was

> appalled that I wasn't sticking my child in a high chair and forcing

> food in his mouth.

> I'm sure I will get the same flack with my son he is 3 months and I

> plan on waiting to feed him also and people always have to give there

> worthless advice its SO annoying

> Anne

[Guest guest]

Knowing what I know about the protective effects of exclusive

breastmilk, I choose to wait till 9 months to start solids with my

daughter. Also knowing that breastmilk is nutritionally all they

need for at least a year. Once you add solids to the picture, the

whole gut changes and they are less protected. My daughter was very

grabby at a young age and started getting teeth at 5 months, so I

could have taken those as a clue to when she was ready for solids,

but for me it wasn't about the time that they were ready, it was

about protecting her as best I could over the winter months. My

daughter was also very grabby, but she is that way with everything,

not just the food I was eating. If she had never eaten food, how

could she know that she wanted to eat it. All she knew was that she

wanted to get it in her mouth, just like any thing else she can get

her hands. Everything goes in her mounth, this is how she explores

her world. Anyway, these were my reasons for waiting till 9 months.

Tara

> In a message dated 4/10/2007 3:36:13 PM Eastern Daylight Time,

> ingrid_schebesch@ <mailto:ingrid_schebesch%40btinternet.com>

btinternet.com

> writes:

>

> a need for solids arises at

> around 6 months for a baby

>

> I actually think a baby doesn't need solids for at least the first

year of

> life. I started on solids at 11 months. I just gave her

tastes of

> things, so she could experience different textures. She didn't

start eating

> for

> substance until after a year old. I had so many people ask me when

I was

> going to start feeding her solids. It was getting annoying. She

was/is

> thriving so much on breastmilk. That's just my opinion though.

>

> Holly

>

> ************************************** See what's free at

http://www.aol.

> <http://www.aol.com.> com.

>

>

[Guest guest]

Despite the fact that she couldn't desire something she never had before, smells

are very powerful and do have an impact on desire even in one so young, I

think....Anita

Tara Maue <orrin_reilly@...> wrote: Knowing what I know about the

protective effects of exclusive

breastmilk, I choose to wait till 9 months to start solids with my

daughter. Also knowing that breastmilk is nutritionally all they

need for at least a year. Once you add solids to the picture, the

whole gut changes and they are less protected. My daughter was very

grabby at a young age and started getting teeth at 5 months, so I

could have taken those as a clue to when she was ready for solids,

but for me it wasn't about the time that they were ready, it was

about protecting her as best I could over the winter months. My

daughter was also very grabby, but she is that way with everything,

not just the food I was eating. If she had never eaten food, how

could she know that she wanted to eat it. All she knew was that she

wanted to get it in her mouth, just like any thing else she can get

her hands. Everything goes in her mounth, this is how she explores

her world. Anyway, these were my reasons for waiting till 9 months.

Tara

> In a message dated 4/10/2007 3:36:13 PM Eastern Daylight Time,

> ingrid_schebesch@

btinternet.com

> writes:

>

> a need for solids arises at

> around 6 months for a baby

>

> I actually think a baby doesn't need solids for at least the first

year of

> life. I started on solids at 11 months. I just gave her

tastes of

> things, so she could experience different textures. She didn't

start eating

> for

> substance until after a year old. I had so many people ask me when

I was

> going to start feeding her solids. It was getting annoying. She

was/is

> thriving so much on breastmilk. That's just my opinion though.

>

> Holly

>

> ************************************** See what's free at

http://www.aol.

> com.

>

>

[Guest guest]

Tara--

Children are very wise in many ways...far more knowledgeable and

intuitively understanding of what is good for them than we ever give

them credit for. As I said to Holly, any baby might grab food and

put it in the mouth--those that swallow instead of spitting, and then

don't have any adverse reactions, are ready to eat. Your breastmilk

offers just as much protection to your child, whether or not the

child is also eating food--at least, if it's decent food!

Yes, children need our protection, but not to be protected from the

wisdom of their own bodies. Children tend to be very attuned to

their bodies and feelings--they can be trusted to know what they are

ready for. And I've always thought that the more I trusted them in

this way, the more they would learn to trust themselves--and keep

that intuitive understanding of their own needs.

Maggie

> > In a message dated 4/10/2007 3:36:13 PM Eastern Daylight Time,

> > ingrid_schebesch@ <mailto:ingrid_schebesch%40btinternet.com>

> btinternet.com

> > writes:

> >

> > a need for solids arises at

> > around 6 months for a baby

> >

> > I actually think a baby doesn't need solids for at least the

first

> year of

> > life. I started on solids at 11 months. I just gave her

> tastes of

> > things, so she could experience different textures. She didn't

> start eating

> > for

> > substance until after a year old. I had so many people ask me

when

> I was

> > going to start feeding her solids. It was getting annoying. She

> was/is

> > thriving so much on breastmilk. That's just my opinion though.

> >

> > Holly

> >

> > ************************************** See what's free at

> http://www.aol.

> > <http://www.aol.com.> com.

> >

> >

[Guest guest]

What we 'smell' is actually tiny bits of particulate matter of the

thing we are smelling. It's not 'just a scent of something', it IS

that thing in very minute quantity. So yes, smells do have an impact

on desire--not just, I don't think, desire in the intellectual

sense. A baby's body can recognize things, in smells, that it

wants/needs/recognizes as 'good'. This is quite apart, I believe--or

in addition to--the mere fact that babies want to do whatever others

are doing.

Babies can indeed know when they are ready to eat!

Maggie

>

> Despite the fact that she couldn't desire something she never had

before, smells are very powerful and do have an impact on desire even

in one so young, I think....Anita

>

[Guest guest]

Hi n,

That sounds terrible. I hope they can save the port, or at least take it out

with a minimum of problem. Take care. (and Ezra, 12 yr. old systemic)

_____

From: [mailto: ] On Behalf

Of ajaomom@...

Sent: Wednesday, October 08, 2008 4:25 PM

Subject: Holly

Just wanted to let you all know that Holly is back in the

hospital...........her port is not functioning properly...........they may

have to take it out........aaaarrrggghhhhhh!!!?? Please keep her in your

prayers.

n and Holly

14 years old systemic since 9/94

[Guest guest]

When I was talking to last night we both were wondering how Holly's rehab

went??

I hope that she is ok and gets thru this hurdle.

Much love,

and Rob 19 JAS

PS Rob is having pain again today and trying to pass that rotten kidney stone!!

Holly

>

>

>

> Just wanted to let you all know that Holly is back in the

> hospital...........her port is not functioning

> properly...........they may

> have to take it out........aaaarrrggghhhhhh!!!?? Please keep her

> in your

> prayers.

>

> n and Holly

> 14 years old systemic since 9/94

>

>

[Guest guest]

kidney stones are awful!!!!!???? Her rehab went well overall............she came

home from that on a lot of pred and morphine.....and was doing well. Now that we

are at only 5mgs of pred a day she is having a lot of break through stuff. This

whole port thing is just making me crazy!!!?? Tell Rusty I think about him often

and he is in my heart and prayers. Talk to you soon.

?

n and Holly 14

Systemic Jra since 9/94

Re: RE: Holly

When I was talking to last night we both were wondering how Holly's rehab

went??

I hope that she is ok and gets thru this hurdle.

Much love,

and Rob 19 JAS

PS Rob is having pain again today and trying to pass that rotten kidney stone!!

Holly

>

>

>

> Just wanted to let you all know that Holly is back in the

> hospital...........her port is not functioning

> properly...........they may

> have to take it out........aaaarrrggghhhhhh!!!?? Please keep her

> in your

> prayers.

>

> n and Holly

> 14 years old systemic since 9/94

>

>

[Guest guest]

n, thinking of you and Holly.  Keep us posted.  Lots of hugs for all of

you!

 

Sending prayers & happy thoughts,

Beth

Holly

Just wanted to let you all know that Holly is back in the hospital....

........her port is not functioning properly.... .......they may have to take it

out........aaaarrrg gghhhhhh! !!?? Please keep her in your prayers.

n and Holly

14 years old systemic since 9/94

[Guest guest]

Geez if aint one thing it sure is another or so it seems. JA sucks! I feel for

Holly and hope she gets her port situation fixed without any further problems.

She is one tough young aldy. Tell her hi from KY and we are thinking of her.

...I hope as Rob does that the dang stone hurries itself up!

I am hoping to go see this evening. Today is visitation for Hope,

and Lindsey and I am not sure how that will go but if all goes as planned I will

make it to the hospital and will update upon my return.

Hugs to all.

Hangin tough

Donna

[Guest guest]

Donna..........I meant to tell you yesterday that her doctor in the ER was from

lexington......and louisville..............thats where he grew up, he lives here

now............small world huh???...........tell uncle rusty hello from

us!!!???????? n

Re: Holly

Geez if aint one thing it sure is another or so it seems. JA sucks! I feel for

Holly and hope she gets her port situation fixed without any further problems.

She is one tough young aldy. Tell her hi from KY and we are thinking of her.

...I hope as Rob does that the dang stone hurries itself up!

I am hoping to go see this evening. Today is visitation for Hope,

and Lindsey and I am not sure how that will go but if all goes as planned I will

make it to the hospital and will update upon my return.

Hugs to all.

Hangin tough

Donna

[Guest guest]

Sorry that she is having so many problems with the port.

That's so frustrating. I hope it can be resolved quickly.

sonia (aundrea 13 fibromyalgia/gerd)

>

> Just wanted to let you all know that Holly is back in the

hospital...........her port is not functioning properly...........they

may have to take it out........aaaarrrggghhhhhh!!!?? Please keep her in

your prayers.

>

> n and Holly

> 14 years old systemic since 9/94

>

>

>

[Guest guest]

Sorry that she is having so many problems with the port.

That's so frustrating. I hope it can be resolved quickly.

sonia (aundrea 13 fibromyalgia/gerd)

>

> Just wanted to let you all know that Holly is back in the

hospital...........her port is not functioning properly...........they

may have to take it out........aaaarrrggghhhhhh!!!?? Please keep her in

your prayers.

>

> n and Holly

> 14 years old systemic since 9/94

>

>

>

[Guest guest]

No i brought them with me, i was infected by my mother who works in

public health in Austin.

I should be fine getting rid of them here. The house is converted,

meaning they built walls between us and them. im going to tape up the

old vents that arent working any more. I believe they reconfigured

the duct system so we can have a separate bill.

> >

> > Well im not losing hope, we dont share any common areas and

theres

> > walls between us. And weve only been here for a month and a half.

So

> > im going to do what i can for now...

>