Gail

[Guest guest]

<<That must be why you

are so compassionate and understanding.>>

Hi Gail,

It takes one to know one!

Thanks,

[Guest guest]

In a message dated 7/7/02 8:49:07 PM Pacific Daylight Time,

outerspace@... writes:

<< Gail

has the brushfield spots and increased 1-2 toe spacing.

Although was 6 pounds at birth - by 2 months he was extremely obese.

He didn't start slimming down until he was about 2 years old. Many docs were

shocked when they saw him - looking back at his pics always gives us a good

laugh!!lololol

Thankfully - he had no probs with his heart. When he was almost 1 year old

he was hospitalized

with pneumonia and by the 3rd day he went into respiratory failure - that

was the only major hospital

stay. The rest were just for croup (the usual stuff)

kathy >>

Kathy,

I just love the space between Seth's toes. LOL Works like a thumb! LOL

He's always picking up things with his feet. LOL Seth had the hole in the

upper chamber of his heart, but that's been fixed, and so far, so good. I

think Seth only has the Brushfield spot in one eye, like the crease in his

hand. He also has the crooked pinkie finger, on both hands. That's the

first thing I noticed when he was born and told dh that Seth had downs,

before they even checked him. Wow, respiratory failure? How scary is that!

Seth has never been in the hospital other than twice, for his heart. I don't

think! LOL Gosh, between my Grandson, Mother and dh, I spend a lot of time

at the hospital!

Gail :-)

[Guest guest]

Gosh Kathy, I never thought about him taking his shoes off. No doubt that he

would, either. LOL That's great about carrying a wallet and teaching

him to show his ID. Wonder if it's possible to have temporary tattoos made

to use for outings? LOL That's about the only thing that Seth wouldn't be

able to get off. LOL

Gail :-)

<< Gail,

would never wear one either!! I would like to have one

(just in case) for family outings, field trips and such.

The lady at med-alert told me that lots of children take off their

shoes and jackets -- she advised against pinning or attaching it

to their clothing for that reason.

Recently -- started carrying a wallet (very slender)in his

pants pocket. I put his name, address, phone number, emergency contact,

and a small picture in the corner (just like having a drivers license)

and I laminated it -- then punched a hole in the corner to attach it

to a small ring in his wallet. is non-verbal and if someone was

to ask him his name he would only repeat the word " name " and even if

he knew to say " " nobody would be able to understand him. So with

the ID we are trying to teach him to show the ID to someone if they ask

him, " what is your name?? "

On the back of the card - you could add some more info. if need be!!

Kathy

>>

[Guest guest]

In a message dated 7/8/02 12:27:00 AM Eastern Daylight Time,

smilinggail@... writes:

> That's about the only thing that Seth wouldn't be

> able to get off. LOL

> Gail :-)

>

>

ROTFLOL Gail!!!!!!!!! OMG, ROTFLOL!!!!!! Yep, Maddie too!!!! I never

thought of tatooing her....LOLOLOL

Donna

[Guest guest]

In a message dated 7/8/02 12:21:24 AM Eastern Daylight Time,

smilinggail@... writes:

> How scary is that!

> Seth has never been in the hospital other than twice, for his heart. I

> don't

> think! LOL Gosh, between my Grandson, Mother and dh, I spend a lot of

> time

> at the hospital!

>

You sure do Gail!!!!!! Here's to NO MORE hospital visits for you, K?!?!?

Brushfield spots in one eye, eh?? Hmmm, never heard of that, but then Seth

is unique in a lot of ways....;-) I love the spots.....they look like

bright lights shining out from Maddie's baby blues. BTW, she's also the

only one of my kids to have her Dad's blue eyes.

Donna

[Guest guest]

In a message dated 7/8/02 10:57:40 AM Pacific Daylight Time, duffey48@...

writes:

<< ROTFLOL Gail!!!!!!!!! OMG, ROTFLOL!!!!!! Yep, Maddie too!!!! I never

thought of tatooing her....LOLOLOL

Donna >>

Donna, just sent me this addy. I haven't checked it out yet, but I'm

gonna!!!!! That man knows EVERYTHING!!!! LOL

Gail :-)

Just read your idea about temporary tattoos -- great idea !!! check

out http://www.tattoosales.com/ they've got a custom price of 70

dollars for 1000 at a size of 1.5 x1.5 !!!!!!! You could of

course use a biro or one of those ink pens LOL but where would you write

on Seth ???

[Guest guest]

In a message dated 7/8/02 11:00:22 AM Pacific Daylight Time, duffey48@...

writes:

<< You sure do Gail!!!!!! Here's to NO MORE hospital visits for you, K?!?!?

Brushfield spots in one eye, eh?? Hmmm, never heard of that, but then Seth

is unique in a lot of ways....;-) I love the spots.....they look like

bright lights shining out from Maddie's baby blues. BTW, she's also the

only one of my kids to have her Dad's blue eyes.

Donna >>

Now, I could be wrong about that Donna, and chances are I am. LOL Just

seems like I remember them saying that a long time ago. LOL

Gail :-)

[Guest guest]

In a message dated 7/9/02 5:18:07 AM Pacific Daylight Time, DPLigon@...

writes:

<< Hey Gail and Donna, has the brushfield spots in both blue eyes

but then in one eye he also has a brown streak that the doc just

noticed recently, wow,!! I also like these spots or sparkles as I

call them. They do look like lights dont they? Dawn

>>

Angel dust Dawn, pure angel dust!

Gail :-)

[Guest guest]

In a message dated 7/9/02 7:22:25 AM Pacific Daylight Time, Scherb@...

writes:

<< This reminds me that Sam has white flecks. They are called 'snowflake

cataracts " and are just something to watch.

>>

, are they dangerous? I've never heard of them. Will they have to be

removed?

Gail :-)

[Guest guest]

Hey Gail and Donna, has the brushfield spots in both blue eyes

but then in one eye he also has a brown streak that the doc just

noticed recently, wow,!! I also like these spots or sparkles as I

call them. They do look like lights dont they? Dawn

> In a message dated 7/8/02 12:21:24 AM Eastern Daylight Time,

> smilinggail@a... writes:

>

>

> > How scary is that!

> > Seth has never been in the hospital other than twice, for his

heart. I

> > don't

> > think! LOL Gosh, between my Grandson, Mother and dh, I spend a

lot of

> > time

> > at the hospital!

> >

>

> You sure do Gail!!!!!! Here's to NO MORE hospital visits for you,

K?!?!?

> Brushfield spots in one eye, eh?? Hmmm, never heard of that, but

then Seth

> is unique in a lot of ways....;-) I love the spots.....they look

like

> bright lights shining out from Maddie's baby blues. BTW, she's

also the

> only one of my kids to have her Dad's blue eyes.

> Donna

>

>

>

[Guest guest]

This reminds me that Sam has white flecks. They are called 'snowflake

cataracts " and are just something to watch.

& Garry, parents of (11 ds), (10 ds), JJ (8

ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (5 ds). All adopted.

----------

>From: smilinggail@...

><< Hey Gail and Donna, has the brushfield spots in both blue eyes

> but then in one eye he also has a brown streak that the doc just

> noticed recently, wow,!! I also like these spots or sparkles as I

> call them. They do look like lights dont they? Dawn

> >>

>Angel dust Dawn, pure angel dust!

>Gail

[Guest guest]

Gail, No at this point they do not need removing. Just another thing to

keep an eye on(no pun intended) They are flaked throughout the eye surface

not where they will obstruct the vision.

& Garry, parents of (11 ds), (10 ds), JJ (8

ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (5 ds). All adopted.

[Guest guest]

In a message dated 7/9/02 1:48:13 PM Pacific Daylight Time,

okieleah@... writes:

<< gail,

this made me laugh.... your description of how jen is a " handy helper " when

you take her with you on a trip.....heeheh your to much... :-)but you always

bring a smile to my face.... lol take care, hugs to all, leah -who is very

tired....

>>

Get some rest Leah and then let us all know about the conference. What did

you learn, who are good speakers etc.... Use those witty fingers of yours to

type all the escapades with your humorous twist to it all! LOL

Gail :-)

[Guest guest]

hehe ive thought of it a time or two, but what if

something changes,lol, maybe just write with a

permanent marker on them for the day, shawna.

--- duffey48@... wrote:

> In a message dated 7/8/02 12:27:00 AM Eastern

> Daylight Time,

> smilinggail@... writes:

>

>

> > That's about the only thing that Seth wouldn't be

> > able to get off. LOL

> > Gail :-)

> >

> >

>

> ROTFLOL Gail!!!!!!!!! OMG, ROTFLOL!!!!!! Yep,

> Maddie too!!!! I never

> thought of tatooing her....LOLOLOL

> Donna

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

In a message dated 7/12/2002 4:09:22 PM Eastern Daylight Time,

smilinggail@... writes:

> " I will not wish thee riches, nor the glow of greatness, but that

> wherever thou go some weary heart shall gladden at they smile, or shadowed

> life know sunshine for a while. And so thy path shall be a track of light,

> like angel's footsteps passing through. "

Hi Gail,

Thankyou, I am ok. That was beautiful!!!

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Gail,

I know exactly what you mean. I hate for anyone to say they feel sorry for

me. Yikes, what kind of a life do they think I have? I guess it feels too

much like pity. Anyway who are they to say that living with a child with a

disability automatically puts you into the category of someone " to feel sorry

for. " They usually don't have a clue about disabilities or have all kinds of

old stereotypes that they are thinking of. Heck, I feel sorry for some of

these people, knowing what kind of problems they are dealing with. I wonder

how they would react if I told them " I feel sorry for you! " I don't think

they would like that very much. I know I have a much better life than many

people on this earth, not necessarily easy but definitely NOT someone to feel

sorry for.

Marisa

[Guest guest]

In a message dated 8/9/02 10:35:05 PM Pacific Daylight Time, poggim@...

writes:

<< Gail,

I know exactly what you mean. I hate for anyone to say they feel sorry

for

me. Yikes, what kind of a life do they think I have? I guess it feels too

much like pity. Anyway who are they to say that living with a child with a

disability automatically puts you into the category of someone " to feel

sorry

for. " They usually don't have a clue about disabilities or have all kinds of

old stereotypes that they are thinking of. Heck, I feel sorry for some of

these people, knowing what kind of problems they are dealing with. I wonder

how they would react if I told them " I feel sorry for you! " I don't think

they would like that very much. I know I have a much better life than many

people on this earth, not necessarily easy but definitely NOT someone to

feel

sorry for.

Marisa >>

I second that Marisa!!!!!!!!!!

Gail :-)

[Guest guest]

In a message dated 8/21/02 6:44:02 PM Pacific Daylight Time,

p_houser37@... writes:

<< Hi Gail,

The Placement you have for Seth sounds wonderful! Much better than last

year. I hope this year proves to be the best ever!

Pam mom to identical twins Hannah (DS) and (DS-ASD) age 7, Josh 21

and Dusty 16 >>

Thanks Pam. I know it doesn't sound like much to some, but it really does

seem to be a perfect fit for Seth. I hope someday I can write a post like

yours about your IEP meeting and placement.

Gail :-)

[Guest guest]

Hi Gail,

Thanks for asking about Cait. She is not doing very well. She is 32 wks. and

having lots of preterm labor issues. I sat at the hospital with her all day

on wed and didn't get very many answers. I honestly don't think they really

know. I wouldn't be surprised if she had this baby within the next few weeks.

How is your dh?

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 12/31/2002 10:25:07 AM Eastern Standard Time,

gboughton@... writes:

> Ted has so much self-esteem! He thinks he is the coolest! He will

> put on some rag shirt inside out and say, " How do I look? " hehe

> Gail in Cleveland with rain and all the snow is gone!

Hi Gail,

GO TED!!!!!

Charlyne

Mom to Zeb DS/OCD ?

[Guest guest]

> http://www.msnbc.com/news/909205.asp

> >>

>

> Good article Irma. Thanks for sharing. I wish all our kids were

all able

> to try all the different therapies.

> Gail ;-)

Hi Gail,

Yes, you're right it would be neat if we found something that works

for our kids. As my co-workers had mentioned this to me. All I told

them was " I'm glad for the little girl's parents. We all know how

hard it is when your child does not say one word and then

automatically any little voice is a joy. If it had been my

going through this and there were some progress like this little

girl had shown that would be great! Then there is the other medical

label that he was born with. Our kids are in a different world with

the multiple dx's " . I just thank God that we have each other even if

its through cyberland. I did enjoy reading this, too.

Hugs!

Irma,14,DS/ASD

[Guest guest]

Hi Gail,

Something detected by his OT/SI and I, as I was yakking away.

started doing his so call dance like rocking back and forth and his

crazy quick turn arounds and his stimming. Well, the reason behind

this was because my voice is high pitch. Me record my voice, eh! It

would just cause him to react or act out. Always something. : )

Irma,14,DS/ASD

[Guest guest]

In a message dated 5/7/03 8:48:20 AM Eastern Daylight Time,

ICANFIELD@... writes:

<< Hi Gail,

Yes, you're right it would be neat if we found something that works

for our kids. As my co-workers had mentioned this to me. All I told

them was " I'm glad for the little girl's parents. We all know how

hard it is when your child does not say one word and then

automatically any little voice is a joy. If it had been my

going through this and there were some progress like this little

girl had shown that would be great! Then there is the other medical

label that he was born with. Our kids are in a different world with

the multiple dx's " . I just thank God that we have each other even if

its through cyberland. I did enjoy reading this, too.

Hugs!

Irma,14,DS/ASD >>

Yep Irma,

Have to be happy for all those that find the help they need, and educate the

ones who need help. Hey, cyberland works!!!!!! Some of my best friends are

cyber friends! :-) I'll be meeting up with Leah, Donna and maybe Margaret

next month. I'm surprised that my girls are so excited about it. Disney,

the beach and Hershey Park, and they are just as excited about meeting my

cyber friends as they are about the rest of the trip.

Gail :-)

[Guest guest]

In a message dated 5/7/2003 2:21:49 PM Eastern Standard Time,

smilinggail@... writes:

> I'll be meeting up with Leah, Donna and maybe Margaret

> next month. I'm surprised that my girls are so excited about it. Disney,

> the beach and Hershey Park, and they are just as excited about meeting my

> cyber friends as they are about the rest of the trip.

> Gail :-)

>

Aw, that's so sweet Gail!!! Even though they already met boring old

me....LOL

Let me know your plans when you have them finalized.

Donna

[Guest guest]

WOW!! Gail,

I'm excited for all of you. When y'all happy, then I'm happy. May

that day arrive and everyone shall meet.

Hugs! That it'll happen. I'll be with ya'll in spirit and ,

too.

Irma,14,DS/ASD

> Yep Irma,

> Have to be happy for all those that find the help they need, and

educate the

> ones who need help. Hey, cyberland works!!!!!! Some of my best

friends are

> cyber friends! :-) I'll be meeting up with Leah, Donna and maybe

Margaret

> next month. I'm surprised that my girls are so excited about it.

Disney,

> the beach and Hershey Park, and they are just as excited about

meeting my

> cyber friends as they are about the rest of the trip.

> Gail :-)