Re: could use a prayer back up crew.........PLEASE!

[Guest guest]

Diane:

sending positive Wisconsin vibes and lots of gentle hugs for all of you.  Please

keep us updated on how she is doing.  Poor girl has been through so much lately,

she certainly did not need this (nor did mom).

 

Beth & Hannah, 11, the mystery patient, asthma; gerd; migraines and a yet to be

determined stomach problem

 

Sending prayers & happy thoughts,

Beth

could use a prayer back up crew.........PLEASE!

Hello to Everyone,

Yesterday while swimming with friends Maggie got out of the pool and sat on a

lawn chair for a short rest.

Because she was working hard playing around in the water her legs were tired and

her hips were bothering her, she sat down for about 10 minutes and then while

trying to stand back up her knee's locked up on her and she fell.

She hit the lawn chair and then the bricks underneath and stayed down on her

hands and knees for quite awhile not saying a word. Maggie has Osteogenesis

Imperfecta or Brittle Bone disease and has had hundreds of fractures so I

quickly recognized the limp after she was able to get back up onto her feet. But

she swore to me that she was fine. (right!)

Somewhere around 10pm last evening she was screaming in pain and admitted to me

that she was broke. Maggie broke her tibia right below her knee. Now comes the

fun part.

They could not cast her because that would require casting over both the knee

and ankle, that were flaring. She also has open ulcers (approx 8) on that leg.

This would not allow for wound care that she needs daily to keep them from

getting infected. Still the leg is broke and should she bare any weight on it at

all with out it being stabalized, it could shatter. (because the bone is

brittle)

Her Ortho doc who she has had since she was a baby, decided to put an imobilizer

on the leg from the hip to the ankle. I can take it off for wound care and if

she is just sitting down in her wheelchair I can open it up so that the air can

get to her leg. We did a lot of problem solving in a very short time!!

The break is in a large part of her bone, the pain is horrible for her. Every

time we move her leg she throws up! It made the 30 minute drive to and from the

doctors office rather entertaining. ...but sad. She is so discouraged right now,

there have just been so many changes lately that she isn't sure what to think or

how to act.

We are supposed to go to St. Louis for her first every major league baseball

game (she is a huge Cardinal Fan!) Two of her doctors (husband and wife)gave her

their tickets for August 3rd. They are VIP tickets for seats right behind home

plate. Also, before, during and after the game passes to the players lounge. We

will definately still take her that day, but I am hoping by then the spasms

settle down in her leg so that she can enjoy it.

PLEASE can you say a prayer for some added strength for Maggie? So that she will

get through this bump in the road and not give up. It has never been easy when

she breaks a bone....but having everything else acting up at the same time is

just plain miserable!

Thanks for the ear!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

[Guest guest]

Prayers in progress, I'm so sorry...

From: Diane Wiederholt <hockeytough@...>

Subject: could use a prayer back up crew.........PLEASE!

Date: Friday, July 25, 2008, 6:47 PM

Hello to Everyone,

Yesterday while swimming with friends Maggie got out of the pool and sat on a

lawn chair for a short rest.

Because she was working hard playing around in the water her legs were tired and

her hips were bothering her, she sat down for about 10 minutes and then while

trying to stand back up her knee's locked up on her and she fell.

She hit the lawn chair and then the bricks underneath and stayed down on her

hands and knees for quite awhile not saying a word. Maggie has Osteogenesis

Imperfecta or Brittle Bone disease and has had hundreds of fractures so I

quickly recognized the limp after she was able to get back up onto her feet. But

she swore to me that she was fine. (right!)

Somewhere around 10pm last evening she was screaming in pain and admitted to me

that she was broke. Maggie broke her tibia right below her knee. Now comes the

fun part.

They could not cast her because that would require casting over both the knee

and ankle, that were flaring. She also has open ulcers (approx 8) on that leg.

This would not allow for wound care that she needs daily to keep them from

getting infected. Still the leg is broke and should she bare any weight on it at

all with out it being stabalized, it could shatter. (because the bone is

brittle)

Her Ortho doc who she has had since she was a baby, decided to put an imobilizer

on the leg from the hip to the ankle. I can take it off for wound care and if

she is just sitting down in her wheelchair I can open it up so that the air can

get to her leg. We did a lot of problem solving in a very short time!!

The break is in a large part of her bone, the pain is horrible for her. Every

time we move her leg she throws up! It made the 30 minute drive to and from the

doctors office rather entertaining. ...but sad. She is so discouraged right now,

there have just been so many changes lately that she isn't sure what to think or

how to act.

We are supposed to go to St. Louis for her first every major league baseball

game (she is a huge Cardinal Fan!) Two of her doctors (husband and wife)gave her

their tickets for August 3rd. They are VIP tickets for seats right behind home

plate. Also, before, during and after the game passes to the players lounge. We

will definately still take her that day, but I am hoping by then the spasms

settle down in her leg so that she can enjoy it.

PLEASE can you say a prayer for some added strength for Maggie? So that she will

get through this bump in the road and not give up. It has never been easy when

she breaks a bone....but having everything else acting up at the same time is

just plain miserable!

Thanks for the ear!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

[Guest guest]

Oh Diane, I am so so sorry to hear this. I will be offering prayers for Maggie

as I go to sleep. I can't imagine all she is dealing with at so young an age. I

hope that she will be able to go to the game and enjoy it somewhat. Poor dear, I

can't imagine how you feel! Can you also send us out addresses so we can send

her cards??

and Rob 19 JAS

could use a prayer back up crew.........PLEASE!

> Hello to Everyone,

>

> Yesterday while swimming with friends

> Maggie got out of the pool and sat on a lawn chair for a short

> rest.

>

> Because she was working hard playing

> around in the water her legs were tired and her hips were

> bothering her, she sat down for about 10 minutes and then while

> trying to stand back up her knee's locked up on her and she fell.

>

> She hit the lawn chair and then the

> bricks underneath and stayed down on her hands and knees for

> quite awhile not saying a word. Maggie has Osteogenesis

> Imperfecta or Brittle Bone disease and has had hundreds of

> fractures so I quickly recognized the limp after she was able to

> get back up onto her feet. But she swore to me that she was

> fine. (right!)

>

> Somewhere around 10pm last evening she was

> screaming in pain and admitted to me that she was broke. Maggie

> broke her tibia right below her knee. Now comes the fun part.

>

> They could not cast her because that would require

> casting over both the knee and ankle, that were flaring. She

> also has open ulcers (approx 8) on that leg. This would not

> allow for wound care that she needs daily to keep them from

> getting infected. Still the leg is broke and should she bare any

> weight on it at all with out it being stabalized, it could

> shatter. (because the bone is brittle)

>

> Her Ortho doc who she has had since she was a baby,

> decided to put an imobilizer on the leg from the hip to the

> ankle. I can take it off for wound care and if she is just

> sitting down in her wheelchair I can open it up so that the air

> can get to her leg. We did a lot of problem solving in a very

> short time!!

>

> The break is in a large part of her bone, the pain is

> horrible for her. Every time we move her leg she throws up! It

> made the 30 minute drive to and from the doctors office rather

> entertaining....but sad. She is so discouraged right now, there

> have just been so many changes lately that she isn't sure what

> to think or how to act.

>

> We are supposed to go to St. Louis for her first every

> major league baseball game (she is a huge Cardinal Fan!) Two of

> her doctors (husband and wife)gave her their tickets for August

> 3rd. They are VIP tickets for seats right behind home plate.

> Also, before, during and after the game passes to the players

> lounge. We will definately still take her that day, but I

> am hoping by then the spasms settle down in her leg so that she

> can enjoy it.

>

> PLEASE can you say a prayer for some added strength for

> Maggie? So that she will get through this bump in the road and

> not give up. It has never been easy when she breaks a

> bone....but having everything else acting up at the same time is

> just plain miserable!

>

> Thanks for the ear!

>

> Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

>

>

>

>

>

[Guest guest]

Hi ,

Oh she would think that was wonderful!

If you wanted I can give you her carepage, this way you can post her a message

instead if it was easier for you.

She has had a carepage for about 2 years now. It gets a little crazy if you

try to go back and read it all.....at the same time it is the begining of her

journey with her autoimmune disease and finding out that she has Primary Immune

Deficiency as well. Way back when they thought it was...nothing.

There are photos of her from Day 1 when she was in the NICU all the way up to

today on the couch with her cat,dog and broken leg!!

It is up to you so I will give you both addresses.

Home is Maggie Wiederholt

23338 80th Avenue

Walcott, Iowa 52773

Care page is: WWW.carepages.com

her carepage name is: ballerinagurl

We feel so lucky to have found this group through another parent who has a

child with JRA. I can't imagine how lost we would be sometimes without the

support of others, down the road we hope to be able to give back as much as we

have gotten!

Thank you so much for your kindness!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

> From: and Schulz <snooksmama@...>

> Subject: Re: could use a prayer back up crew.........PLEASE!

>

> Date: Saturday, July 26, 2008, 4:06 AM

> Oh Diane, I am so so sorry to hear this. I will be offering

> prayers for Maggie as I go to sleep. I can't imagine all

> she is dealing with at so young an age. I hope that she will

> be able to go to the game and enjoy it somewhat. Poor dear,

> I can't imagine how you feel! Can you also send us out

> addresses so we can send her cards??

> and Rob 19 JAS

>

> could use a prayer back up

> crew.........PLEASE!

>

>

> > Hello to Everyone,

> >

> > Yesterday while swimming with friends

> > Maggie got out of the pool and sat on a lawn chair for

> a short

> > rest.

> >

> > Because she was working hard playing

> > around in the water her legs were tired and her hips

> were

> > bothering her, she sat down for about 10 minutes and

> then while

> > trying to stand back up her knee's locked up on

> her and she fell.

> >

> > She hit the lawn chair and then the

> > bricks underneath and stayed down on her hands and

> knees for

> > quite awhile not saying a word. Maggie has

> Osteogenesis

> > Imperfecta or Brittle Bone disease and has had

> hundreds of

> > fractures so I quickly recognized the limp after she

> was able to

> > get back up onto her feet. But she swore to me that

> she was

> > fine. (right!)

> >

> > Somewhere around 10pm last evening she was

> > screaming in pain and admitted to me that she was

> broke. Maggie

> > broke her tibia right below her knee. Now comes the

> fun part.

> >

> > They could not cast her because that would require

> > casting over both the knee and ankle, that were

> flaring. She

> > also has open ulcers (approx 8) on that leg. This

> would not

> > allow for wound care that she needs daily to keep them

> from

> > getting infected. Still the leg is broke and should

> she bare any

> > weight on it at all with out it being stabalized, it

> could

> > shatter. (because the bone is brittle)

> >

> > Her Ortho doc who she has had since she was a baby,

> > decided to put an imobilizer on the leg from the hip

> to the

> > ankle. I can take it off for wound care and if she is

> just

> > sitting down in her wheelchair I can open it up so

> that the air

> > can get to her leg. We did a lot of problem solving in

> a very

> > short time!!

> >

> > The break is in a large part of her bone, the pain

> is

> > horrible for her. Every time we move her leg she

> throws up! It

> > made the 30 minute drive to and from the doctors

> office rather

> > entertaining....but sad. She is so discouraged right

> now, there

> > have just been so many changes lately that she

> isn't sure what

> > to think or how to act.

> >

> > We are supposed to go to St. Louis for her first

> every

> > major league baseball game (she is a huge Cardinal

> Fan!) Two of

> > her doctors (husband and wife)gave her their tickets

> for August

> > 3rd. They are VIP tickets for seats right behind home

> plate.

> > Also, before, during and after the game passes to the

> players

> > lounge. We will definately still take her that day,

> but I

> > am hoping by then the spasms settle down in her leg so

> that she

> > can enjoy it.

> >

> > PLEASE can you say a prayer for some added strength

> for

> > Maggie? So that she will get through this bump in the

> road and

> > not give up. It has never been easy when she breaks a

> > bone....but having everything else acting up at the

> same time is

> > just plain miserable!

> >

> > Thanks for the ear!

> >

> > Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis,

> PIDD)

> >

> >

> >

> >

> >

>

>

>

[Guest guest]

Hi Diane:

OUCH! Poor girl. Sending prayers your way that her break heals fast. Is

she still vomiting when you move the leg? I hope she gets to enjoy the game.

Take care.

Patty

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

Hi Patty,

She was doing a little bit better today until I decided to bathe her!!

She not only initiated me but the entire tub as well! This was so much easier

when she was smaller, I could at least lift her by myself even with a Spica cast

from her hips to her toes......Got the job done with the help of her big sister

and then it was into her chair to watch none other than Hanna Montanna concert

in 3D! Oh Joy!

Thanks for the prayers, we are putting them to good use! The entire house is

praying to God she sleeps tonight, last night was a long one!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

> From: ThreeMayEmeralds@... <ThreeMayEmeralds@...>

> Subject: Re: could use a prayer back up crew.........PLEASE!

>

> Date: Sunday, July 27, 2008, 1:20 AM

> Hi Diane:

>

>

> OUCH! Poor girl. Sending prayers your way that her break

> heals fast. Is

> she still vomiting when you move the leg? I hope she gets

> to enjoy the game.

>

> Take care.

> Patty

>

>

>

> **************Get fantasy football with free live scoring.

> Sign up for

> FanHouse Fantasy Football today.

> (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

>

>

>

[Guest guest]

Diane,

It must be so difficult letting Maggie particpate in normal kid

activities and knowing that she can easily break a bone at any

moment. I can't even imagine how challenging that is for you on a

daily basis.

I am glad that they came up with the solution for the immobilizer.

With 9 ulcers on her leg, that is certainly as concerning as the

break.

I will be praying for Maggie in hopes that the pain will lesson and

that she will have an enjoyable time cheering her cardinals onto

victory! :-)

(Aundrea 13 fibromyalgia)-

-- In , Diane Wiederholt <hockeytough@...>

wrote:

>

> Hello to Everyone,

>

> Yesterday while swimming with friends Maggie got out of the

pool and sat on a lawn chair for a short rest.

>

> Because she was working hard playing around in the water her

legs were tired and her hips were bothering her, she sat down for

about 10 minutes and then while trying to stand back up her knee's

locked up on her and she fell.

>

> She hit the lawn chair and then the bricks underneath and

stayed down on her hands and knees for quite awhile not saying a

word. Maggie has Osteogenesis Imperfecta or Brittle Bone disease and

has had hundreds of fractures so I quickly recognized the limp after

she was able to get back up onto her feet. But she swore to me that

she was fine. (right!)

>

> Somewhere around 10pm last evening she was screaming in pain and

admitted to me that she was broke. Maggie broke her tibia right below

her knee. Now comes the fun part.

>

> They could not cast her because that would require casting over

both the knee and ankle, that were flaring. She also has open ulcers

(approx 8) on that leg. This would not allow for wound care that she

needs daily to keep them from getting infected. Still the leg is

broke and should she bare any weight on it at all with out it being

stabalized, it could shatter. (because the bone is brittle)

>

> Her Ortho doc who she has had since she was a baby, decided to

put an imobilizer on the leg from the hip to the ankle. I can take it

off for wound care and if she is just sitting down in her wheelchair

I can open it up so that the air can get to her leg. We did a lot of

problem solving in a very short time!!

>

> The break is in a large part of her bone, the pain is horrible

for her. Every time we move her leg she throws up! It made the 30

minute drive to and from the doctors office rather

entertaining....but sad. She is so discouraged right now, there have

just been so many changes lately that she isn't sure what to think or

how to act.

>

> We are supposed to go to St. Louis for her first every major

league baseball game (she is a huge Cardinal Fan!) Two of her doctors

(husband and wife)gave her their tickets for August 3rd. They are VIP

tickets for seats right behind home plate. Also, before, during and

after the game passes to the players lounge. We will definately

still take her that day, but I am hoping by then the spasms settle

down in her leg so that she can enjoy it.

>

> PLEASE can you say a prayer for some added strength for Maggie?

So that she will get through this bump in the road and not give up.

It has never been easy when she breaks a bone....but having

everything else acting up at the same time is just plain miserable!

>

> Thanks for the ear!

>

> Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

>

[Guest guest]

Hi Diane,

sent a greeting to Maggie on her carepage but I wanted you to know I am praying

for a good night's rest for Maggie and all your household tonight and pain

relief for poor Maggie!  I will be praying she is feeling well enough to

thoroughly enjoy her Cardinal's game because what a treat!  What a gracious

thing for her drs to gift those tickets to Maggie.

Will be in touch soon - give Maggie a hug for us and give us an update when you

can.

Hugs,

&

From: Diane Wiederholt <hockeytough@...>

Subject: could use a prayer back up crew.........PLEASE!

Date: Friday, July 25, 2008, 6:47 PM

Hello to Everyone,

Yesterday while swimming with friends Maggie got out of the pool and sat on a

lawn chair for a short rest.

Because she was working hard playing around in the water her legs were tired and

her hips were bothering her, she sat down for about 10 minutes and then while

trying to stand back up her knee's locked up on her and she fell.

She hit the lawn chair and then the bricks underneath and stayed down on her

hands and knees for quite awhile not saying a word. Maggie has Osteogenesis

Imperfecta or Brittle Bone disease and has had hundreds of fractures so I

quickly recognized the limp after she was able to get back up onto her feet. But

she swore to me that she was fine. (right!)

Somewhere around 10pm last evening she was screaming in pain and admitted to me

that she was broke. Maggie broke her tibia right below her knee. Now comes the

fun part.

They could not cast her because that would require casting over both the knee

and ankle, that were flaring. She also has open ulcers (approx 8) on that leg.

This would not allow for wound care that she needs daily to keep them from

getting infected. Still the leg is broke and should she bare any weight on it at

all with out it being stabalized, it could shatter. (because the bone is

brittle)

Her Ortho doc who she has had since she was a baby, decided to put an imobilizer

on the leg from the hip to the ankle. I can take it off for wound care and if

she is just sitting down in her wheelchair I can open it up so that the air can

get to her leg. We did a lot of problem solving in a very short time!!

The break is in a large part of her bone, the pain is horrible for her. Every

time we move her leg she throws up! It made the 30 minute drive to and from the

doctors office rather entertaining. ...but sad. She is so discouraged right now,

there have just been so many changes lately that she isn't sure what to think or

how to act.

We are supposed to go to St. Louis for her first every major league baseball

game (she is a huge Cardinal Fan!) Two of her doctors (husband and wife)gave her

their tickets for August 3rd. They are VIP tickets for seats right behind home

plate. Also, before, during and after the game passes to the players lounge. We

will definately still take her that day, but I am hoping by then the spasms

settle down in her leg so that she can enjoy it.

PLEASE can you say a prayer for some added strength for Maggie? So that she will

get through this bump in the road and not give up. It has never been easy when

she breaks a bone....but having everything else acting up at the same time is

just plain miserable!

Thanks for the ear!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

[Guest guest]

Hi !

She did read your post this afternoon and was excited to have gotten it from

you personally instead of me saying there is this lady whose name is with

a daughter whose name is !!

She thought that was just pretty darn cool, also I think it is great for her

to know she is not alone. Just somehow knowing that has both JIA and PIDD

gives her some added comfort.

I sure do wish there was something more that you could do to ease 's

pain right now too. We have been keeping up over the last few days, not getting

much sleep around here so we might as well do something productive!

Maggie's internal organs respond to Prednisone but her joints really almost

seem to laugh at it. Even the MTX is not a cure-all for her, just helps the

Uveitis and maybe helps with inflammation a little, but not great.

The IVig does give her some anti inflammatory aid, but it doesn't last for

more than a week or so and then she is back to square one.

We are supposed to add Kineret on August 26th, has ever taken that? I

am curious as to if it is even going to help.

Is planning on going away to college or staying close to home?

My 18 year old is staying close to home, she moved last weekend into a house

with 3 other girls so she can live closer to her school which is only an hour

away.

This I am sure is very frustrating for both of you right now, 18 is hard enough

without having to deal with all of this extra stuff too!

We are sending prayers right back at you for , this should be the best

years of her life!!

Hang in there. Huge Hugs from Iowa!

Diane and Maggie

> From: Diane Wiederholt <hockeytough@...>

> Subject: could use a prayer back up

> crew.........PLEASE!

>

> Date: Friday, July 25, 2008, 6:47 PM

>

>

>

>

>

>

>

>

>

>

>

> Hello to Everyone,

>

>

>

> Yesterday while swimming with friends Maggie got out of the

> pool and sat on a lawn chair for a short rest.

>

>

>

> Because she was working hard playing around in the water

> her legs were tired and her hips were bothering her, she sat

> down for about 10 minutes and then while trying to stand

> back up her knee's locked up on her and she fell.

>

>

>

> She hit the lawn chair and then the bricks underneath and

> stayed down on her hands and knees for quite awhile not

> saying a word. Maggie has Osteogenesis Imperfecta or Brittle

> Bone disease and has had hundreds of fractures so I quickly

> recognized the limp after she was able to get back up onto

> her feet. But she swore to me that she was fine. (right!)

>

>

>

> Somewhere around 10pm last evening she was screaming in

> pain and admitted to me that she was broke. Maggie broke her

> tibia right below her knee. Now comes the fun part.

>

>

>

> They could not cast her because that would require casting

> over both the knee and ankle, that were flaring. She also

> has open ulcers (approx 8) on that leg. This would not allow

> for wound care that she needs daily to keep them from

> getting infected. Still the leg is broke and should she bare

> any weight on it at all with out it being stabalized, it

> could shatter. (because the bone is brittle)

>

>

>

> Her Ortho doc who she has had since she was a baby, decided

> to put an imobilizer on the leg from the hip to the ankle. I

> can take it off for wound care and if she is just sitting

> down in her wheelchair I can open it up so that the air can

> get to her leg. We did a lot of problem solving in a very

> short time!!

>

>

>

> The break is in a large part of her bone, the pain is

> horrible for her. Every time we move her leg she throws up!

> It made the 30 minute drive to and from the doctors office

> rather entertaining. ...but sad. She is so discouraged right

> now, there have just been so many changes lately that she

> isn't sure what to think or how to act.

>

>

>

> We are supposed to go to St. Louis for her first every

> major league baseball game (she is a huge Cardinal Fan!) Two

> of her doctors (husband and wife)gave her their tickets for

> August 3rd. They are VIP tickets for seats right behind home

> plate. Also, before, during and after the game passes to the

> players lounge. We will definately still take her that day,

> but I am hoping by then the spasms settle down in her leg so

> that she can enjoy it.

>

>

>

> PLEASE can you say a prayer for some added strength for

> Maggie? So that she will get through this bump in the road

> and not give up. It has never been easy when she breaks a

> bone....but having everything else acting up at the same

> time is just plain miserable!

>

>

>

> Thanks for the ear!

>

>

>

> Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis,

> PIDD)

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>