Hi all, NIH, todays results Ortho // Grace-seeing the kids at NIH

[Guest guest]

In a message dated 8/25/2004 8:27:04 PM Eastern Daylight Time,

gracieb1@... writes:

I don't know about the kids. The email didn't mention them. Only me. I guess

the first step would be me and then on to the others. I'm not sure if my 3

year old would be able to handle the tests anyways. We shall see when they call.

I'll ask them then.

HUGGLES,

Grace

Dear Grace:

You've got it right on the nose, when you said that you'll " see when they

call. " When I spoke to Dr. McDonnel today I asked her how many people they

generally see/schedule at one time. She said that it varied, that sometimes

just 1

or 2, but that sometimes, a few, because it's a family. So, I'm sure you

will likely have the chance for your children to be seen & I surely wouldn't

miss

the chance if I were you. But absolutely, you should remind them when you

speak to them, especially because it sounds like you spoke @ the kids from the

start.

~~~~~~~~~~~~~~

And as for your little one, I would feel that as much as you could get done

for her/him, the better it will be for her/him, later on. It's an invaluable

chance to accrue baseline information that could be so helpful to them later,

if needed (let's hope not). So, take tons of toys, books, candies.....

basically anything you can bribe them with! Down the road, I'm sure it will be

worth

it & you'll be glad you did it.

~~~~~~~~~~~~~~

The other reason I feel they'll want to see all of you together, is that Dr.

McDonnel said, that they particularly wanted " pedigrees. "

That my sound silly, it sure did the first time I heard it, when it was said

to/about me.

~~~~~~~~~~~~~~

In 1987 I went to see Dr. Victor McKusik at 's Hopkin's, when I first

started to seriously investigate what in the world was going on with my body.

And in preparation for my visit, I had to fill out & send in a ton of paperwork

& one was a large form for the names of everyone on my mother's side of my

family, basically, what I'd refer to as my " family tree. " And, I had to note,

next to their name, any medical issues they had experienced. Having been there

all day, pocked & prodded for at least 10-12 hours I was exhausted, hurting &

kind of giddy. I noticed while I was there, several times I heard people

referring to my " pedigree. " So, after a while I asked what they were talking

about. I was shown the paperwork containing my " family tree. " I laughed

hysterically & said, " Oh, you mean my " family tree. "

~~~~~~~~~~~~~~

But, these were some real serious, very straight laced geneticists/scientists

& they didn't see the humor at all & they corrected me like I was a 2 year

old & said, " No, it's your pedigree! " Well, by then, I just couldn't hold it in

anymore & I cracked up laughing again & basically told them " to take a chill

pill, " but I probably wasn't quite so tactful then & do recall wanting to tell

them to " loosen their shorts! " , but I didn't go quite that far. Though I do

know that I ended it, by saying, " And by the way, in case you're tired too &

had me misfiled, just to let you know, I'm a person, not a Poodle! " .

~~~~~~~~~~~~~~

I guess you could say that I personally got a really good laugh, which I

desperately needed by then, but I didn't make any friends in THAT department!

So

it goes. I honestly didn't care, it wasn't going to change anything & they

had a serious case of needing to loosen up their ego's.

Wishing you the best of luck..... and remember to bring lots of bribery

stuff!

Luv Y'all,,

[Guest guest]

Thanks !!! Will definitely talk to them when they call!

HUGGLES,

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

Hi all, NIH, todays results Ortho // Grace-seeing the kids at

NIH

In a message dated 8/25/2004 8:27:04 PM Eastern Daylight Time,

gracieb1@... writes:

I don't know about the kids. The email didn't mention them. Only me. I guess

the first step would be me and then on to the others. I'm not sure if my 3

year old would be able to handle the tests anyways. We shall see when they

call.

I'll ask them then.

HUGGLES,

Grace

Dear Grace:

You've got it right on the nose, when you said that you'll " see when they

call. " When I spoke to Dr. McDonnel today I asked her how many people they

generally see/schedule at one time. She said that it varied, that sometimes

just 1

or 2, but that sometimes, a few, because it's a family. So, I'm sure you

will likely have the chance for your children to be seen & I surely wouldn't

miss

the chance if I were you. But absolutely, you should remind them when you

speak to them, especially because it sounds like you spoke @ the kids from the

start.

~~~~~~~~~~~~~~

And as for your little one, I would feel that as much as you could get done

for her/him, the better it will be for her/him, later on. It's an invaluable

chance to accrue baseline information that could be so helpful to them later,

if needed (let's hope not). So, take tons of toys, books, candies.....

basically anything you can bribe them with! Down the road, I'm sure it will

be worth

it & you'll be glad you did it.

~~~~~~~~~~~~~~

The other reason I feel they'll want to see all of you together, is that Dr.

McDonnel said, that they particularly wanted " pedigrees. "

That my sound silly, it sure did the first time I heard it, when it was said

to/about me.

~~~~~~~~~~~~~~

In 1987 I went to see Dr. Victor McKusik at 's Hopkin's, when I first

started to seriously investigate what in the world was going on with my body.

And in preparation for my visit, I had to fill out & send in a ton of

paperwork

& one was a large form for the names of everyone on my mother's side of my

family, basically, what I'd refer to as my " family tree. " And, I had to note,

next to their name, any medical issues they had experienced. Having been there

all day, pocked & prodded for at least 10-12 hours I was exhausted, hurting &

kind of giddy. I noticed while I was there, several times I heard people

referring to my " pedigree. " So, after a while I asked what they were talking

about. I was shown the paperwork containing my " family tree. " I laughed

hysterically & said, " Oh, you mean my " family tree. "

~~~~~~~~~~~~~~

But, these were some real serious, very straight laced geneticists/scientists

& they didn't see the humor at all & they corrected me like I was a 2 year

old & said, " No, it's your pedigree! " Well, by then, I just couldn't hold it

in

anymore & I cracked up laughing again & basically told them " to take a chill

pill, " but I probably wasn't quite so tactful then & do recall wanting to tell

them to " loosen their shorts! " , but I didn't go quite that far. Though I do

know that I ended it, by saying, " And by the way, in case you're tired too &

had me misfiled, just to let you know, I'm a person, not a Poodle! " .

~~~~~~~~~~~~~~

I guess you could say that I personally got a really good laugh, which I

desperately needed by then, but I didn't make any friends in THAT department!

So

it goes. I honestly didn't care, it wasn't going to change anything & they

had a serious case of needing to loosen up their ego's.

Wishing you the best of luck..... and remember to bring lots of bribery

stuff!

Luv Y'all,,