Multi-purpose Post

[Guest guest]

Howdy Folks,

Well, it's been a doozy of a week here. Everyone in the family got

the stomach flu (except the traveling husband who was in Tennessee at

the time) I have been cleaning up all manner of guck and now how

everyone healthy again. Yippee!!

An update on Connor: Thanks to all who responded to the asymmetry

questions. My PT measured Connor and found only a 1/8 inch off

between right and left. Hah! However, we also noticed that Connor

is dragging his left foot and his ankle is slowly starting

to " fall. " A consequence of having the narrow, flat feet.

WAhhhh!!!!! So, we are still off to the orthotic Doc but not for the

initial reason. Sigh. If it's not one thing it's another.

Oh, BTW: If you have a good thing going - don't compromise it. What

I mean by that is my well intentioned G.I. Doc did a swallowing study

on Connor to determine the severity of his dysphagia and if he had

organization problems with he chewing and swallowing. Before the

test, Connor was eating Peanut Butter, and 1/4 of a grilled cheese

sandwich and pudding with PB in it. Well, they added Barium to all

that stuff and guess what? Go ahead - guess! Now Connor has oral

aversion to all of it. YYEEAARRGGHH!!!! We had the best weight gain

of our life and he's lost half of it since that dratted test. Sigh.

If it's not one thing, it's another.

Onto to some good news.

I'm tired of sitting and fretting over every thing. So, I took my

immense store of nervous energy and channeled it into something

productive: A fund raiser for Magic. My church is hosting a Pancake

Supper to Benefit the Magic Foundation'd RSS/SGA Division. The

monies raised will help fund scholarships for families to go to

convention.

More good news. We are being interviewed for Chrildren's Miracle

Network tomorrow and our local t.v. station is doing a feature story

on Connor: Rare Genetic Disorder Doesn't slow this kid down! " I've

started a public campaign to educate the public on our wonderful

kids. Hopefully a few of the arrogant doctors I've dealt with will

be listening too!!! For all you Virginia Families who are on this

list serve: Please note the date and time - Friday, March 19, from

5:30 - 7:30 p.m. First Christian Church of Lynchburg, VA. 3109

Rivermont Avenue. 24503. If any of you can make it to this fund

raiser it would be fantastic. I would love to have as many of our

kids at different stages of development to be there. Kind of a

walking talking visual aid Of course, you and your families eat

for free!!! If you also need a place to crash, let me know and i

will arrange housing with church members or with us or recommend a

hotel or Bed and Breakfast close by. Please RSVP for my organizing

purposes.

I've arranged for volunteers to create a visual learning experience

when people enter into the fellowship hall. They will be walked

through the process of how one goes about diagnosing RSS and the

common characteristics of the syndrome. Plus, every agency that is

working with Connor, Early Intervention, Blue Ridge Therapy, Project

, local Doc's, etc, will be featured as well. I want people to

see just how many people it takes to care for one kid with RSS.

Finally, I need hard copy pictures of anybody with RSS - kids and

adults. Please send me pictures to my snail mail address:

Kearns 4400 Montgomery Road. Lynchburg, VA 24503. Your names will

not be on them to protect your privacy if you so will, but we will

display them on a " American RSS Family Photo Album. " If I can get

people emotionally and visually connected to our kids, we will have a

greater chance of raising my goal of $3,000.00.

That's all for now. God Bless you all and thanks for the support!

Kearns

Mother to Graham 7; Cameron 4; Connor 16 months IUGR/RSS Zantac &

Periactin.

[Guest guest]

Dear ,

Oh, My, Gosh! Let me get this straight. You have 3 kids under the

age of eight, one of whom won't eat and has multiple doctor

appointments, a husband who travels for his work, the kids have been

sick and you have nervous energy left to use for a fund-raiser.

Agggh! I can't even keep the laundry done and the dishes washed.

LOL!

Love, Conny, 's great-aunt

> Howdy Folks,

>

> Well, it's been a doozy of a week here. Everyone in the family got

> the stomach flu (except the traveling husband who was in Tennessee

at

> the time) I have been cleaning up all manner of guck and now how

> everyone healthy again. Yippee!!

>

> An update on Connor: Thanks to all who responded to the asymmetry

> questions. My PT measured Connor and found only a 1/8 inch off

> between right and left. Hah! However, we also noticed that Connor

> is dragging his left foot and his ankle is slowly starting

> to " fall. " A consequence of having the narrow, flat feet.

> WAhhhh!!!!! So, we are still off to the orthotic Doc but not for

the

> initial reason. Sigh. If it's not one thing it's another.

>

> Oh, BTW: If you have a good thing going - don't compromise it.

What

> I mean by that is my well intentioned G.I. Doc did a swallowing

study

> on Connor to determine the severity of his dysphagia and if he had

> organization problems with he chewing and swallowing. Before the

> test, Connor was eating Peanut Butter, and 1/4 of a grilled cheese

> sandwich and pudding with PB in it. Well, they added Barium to all

> that stuff and guess what? Go ahead - guess! Now Connor has oral

> aversion to all of it. YYEEAARRGGHH!!!! We had the best weight

gain

> of our life and he's lost half of it since that dratted test.

Sigh.

> If it's not one thing, it's another.

>

> Onto to some good news.

>

> I'm tired of sitting and fretting over every thing. So, I took my

> immense store of nervous energy and channeled it into something

> productive: A fund raiser for Magic. My church is hosting a

Pancake

> Supper to Benefit the Magic Foundation'd RSS/SGA Division. The

> monies raised will help fund scholarships for families to go to

> convention.

>

> More good news. We are being interviewed for Chrildren's Miracle

> Network tomorrow and our local t.v. station is doing a feature

story

> on Connor: Rare Genetic Disorder Doesn't slow this kid down! " I've

> started a public campaign to educate the public on our wonderful

> kids. Hopefully a few of the arrogant doctors I've dealt with will

> be listening too!!! For all you Virginia Families who are on this

> list serve: Please note the date and time - Friday, March 19, from

> 5:30 - 7:30 p.m. First Christian Church of Lynchburg, VA. 3109

> Rivermont Avenue. 24503. If any of you can make it to this fund

> raiser it would be fantastic. I would love to have as many of our

> kids at different stages of development to be there. Kind of a

> walking talking visual aid Of course, you and your families eat

> for free!!! If you also need a place to crash, let me know and i

> will arrange housing with church members or with us or recommend a

> hotel or Bed and Breakfast close by. Please RSVP for my organizing

> purposes.

>

> I've arranged for volunteers to create a visual learning experience

> when people enter into the fellowship hall. They will be walked

> through the process of how one goes about diagnosing RSS and the

> common characteristics of the syndrome. Plus, every agency that is

> working with Connor, Early Intervention, Blue Ridge Therapy,

Project

> , local Doc's, etc, will be featured as well. I want people

to

> see just how many people it takes to care for one kid with RSS.

>

> Finally, I need hard copy pictures of anybody with RSS - kids and

> adults. Please send me pictures to my snail mail address:

> Kearns 4400 Montgomery Road. Lynchburg, VA 24503. Your names will

> not be on them to protect your privacy if you so will, but we will

> display them on a " American RSS Family Photo Album. " If I can get

> people emotionally and visually connected to our kids, we will have

a

> greater chance of raising my goal of $3,000.00.

>

> That's all for now. God Bless you all and thanks for the support!

>

> Kearns

> Mother to Graham 7; Cameron 4; Connor 16 months IUGR/RSS Zantac &

> Periactin.

[Guest guest]

- As usual, you totally amaze me! Will you send me a private

email with the subject line something like " need RSS photos? " and I

will tackle that when I get back from New York? Bye for now! Jenn

> Howdy Folks,

>

> Well, it's been a doozy of a week here. Everyone in the family

got

> the stomach flu (except the traveling husband who was in Tennessee

at

> the time) I have been cleaning up all manner of guck and now how

> everyone healthy again. Yippee!!

>

> An update on Connor: Thanks to all who responded to the asymmetry

> questions. My PT measured Connor and found only a 1/8 inch off

> between right and left. Hah! However, we also noticed that

Connor

> is dragging his left foot and his ankle is slowly starting

> to " fall. " A consequence of having the narrow, flat feet.

> WAhhhh!!!!! So, we are still off to the orthotic Doc but not for

the

> initial reason. Sigh. If it's not one thing it's another.

>

> Oh, BTW: If you have a good thing going - don't compromise it.

What

> I mean by that is my well intentioned G.I. Doc did a swallowing

study

> on Connor to determine the severity of his dysphagia and if he had

> organization problems with he chewing and swallowing. Before the

> test, Connor was eating Peanut Butter, and 1/4 of a grilled cheese

> sandwich and pudding with PB in it. Well, they added Barium to

all

> that stuff and guess what? Go ahead - guess! Now Connor has oral

> aversion to all of it. YYEEAARRGGHH!!!! We had the best weight

gain

> of our life and he's lost half of it since that dratted test.

Sigh.

> If it's not one thing, it's another.

>

> Onto to some good news.

>

> I'm tired of sitting and fretting over every thing. So, I took my

> immense store of nervous energy and channeled it into something

> productive: A fund raiser for Magic. My church is hosting a

Pancake

> Supper to Benefit the Magic Foundation'd RSS/SGA Division. The

> monies raised will help fund scholarships for families to go to

> convention.

>

> More good news. We are being interviewed for Chrildren's Miracle

> Network tomorrow and our local t.v. station is doing a feature

story

> on Connor: Rare Genetic Disorder Doesn't slow this kid down! "

I've

> started a public campaign to educate the public on our wonderful

> kids. Hopefully a few of the arrogant doctors I've dealt with

will

> be listening too!!! For all you Virginia Families who are on this

> list serve: Please note the date and time - Friday, March 19,

from

> 5:30 - 7:30 p.m. First Christian Church of Lynchburg, VA. 3109

> Rivermont Avenue. 24503. If any of you can make it to this fund

> raiser it would be fantastic. I would love to have as many of our

> kids at different stages of development to be there. Kind of a

> walking talking visual aid Of course, you and your families

eat

> for free!!! If you also need a place to crash, let me know and i

> will arrange housing with church members or with us or recommend a

> hotel or Bed and Breakfast close by. Please RSVP for my

organizing

> purposes.

>

> I've arranged for volunteers to create a visual learning

experience

> when people enter into the fellowship hall. They will be walked

> through the process of how one goes about diagnosing RSS and the

> common characteristics of the syndrome. Plus, every agency that

is

> working with Connor, Early Intervention, Blue Ridge Therapy,

Project

> , local Doc's, etc, will be featured as well. I want people

to

> see just how many people it takes to care for one kid with RSS.

>

> Finally, I need hard copy pictures of anybody with RSS - kids and

> adults. Please send me pictures to my snail mail address:

> Kearns 4400 Montgomery Road. Lynchburg, VA 24503. Your names

will

> not be on them to protect your privacy if you so will, but we will

> display them on a " American RSS Family Photo Album. " If I can get

> people emotionally and visually connected to our kids, we will

have a

> greater chance of raising my goal of $3,000.00.

>

> That's all for now. God Bless you all and thanks for the support!

>

> Kearns

> Mother to Graham 7; Cameron 4; Connor 16 months IUGR/RSS Zantac &

> Periactin.