Something Positive

October 17, 2005

I wasn't sure if this was a chat or not - so, if I've failed to post

this properly - my apologies!

I wanted to share something positive with my whole experience with

Ian - something that may be able to benefit others in our efforts to

teach our physicians about RSS.

When I was in the emergency room - I had brought my files with me -

of which I have a complete set for Dr. H at home for our appointment

on Thursday - and in these files are all of Ian's medical records.

But, more importantly, I had brought a few things that I had pulled

off the MAGIC website that I immediately shared with the ER docs,

Nurses, Pediatric Unit physician and Ped Nurses. I couldn't beleive

the overwhelming response I recieved. All of the individuals I

shared this information with were actually VERY happy that I shared

it with them. They ALL said that it helped them to understand RSS

and help them to take care of his needs while he was there. As a

matter of fact, EVERY person I shared it with told me after the fact

that they " looked up MAGIC " on the internet and read even more.

They all came to see Ian in his room - just so they could get

a " better look " at him and learn more about his condition. These

are physicians! These are Nurses! I was so happy. The staff at

this hospital really wanted to learn about RSS and were so willing

to be " directed " with Ian's care as opposed to only telling me what

to do. It was the best experience at a hospital I have ever had.

(I even had a future job offer by one of the VP's! - LOL another

story) But, I'm sharing this to let you know - that not every

physician or nurse out there will be as willing to learn - but, it's

always worth a try to give them the option. By bringing with me

Jodie Zwain's e-mail on Saturday, info from MAGIC - it also made

them realize that I'm serious about my son's healthcare and want

them to be just as serious. I was treated like a Queen and Ian was

treated like a Prince. I reminded everyone there that RSS just

isn't about " being short " - there are so many other things we must

be in tune with and they all agreed. I think I even made my

Pediatrician realize (after seeing his blood sugar at 48) was that

maybe her other RSS patients (if there really are any in her

practice - she sais there are) are not being monitored the way they

should?? Who knows. But, I think I made an impression.

Just a little something positive to remind us that during all these

stressful and difficult times - there is some positive out there.

My best to all of those who are dealing with difficult times right

now. I'm there with you and in your thoughts.

- Hugs.

- H

October 17, 2005

I had a similar experience on Wednesday with Liam's Dentist. I told her he

had RSS and was talking about teeth problems etc.. She asked for the Magic

website, I gave it to her. And was asking all kind of questions about RSS,

teeth and GHD etc... Then the mother of the girl in the next chair came to

me and said " I don't want you to think I was listening to your conversation

but my ears perked when I heard RSS, then Magic foundation.... " Well, she

is on the magic GHD list, her daughter is GHD and has been on GH for 5 years

...

The dentist came over to us and then the other one did and we were all

talking and they were very interested in learning more...

Too bad I am going to have to switch dentists, because of insurance changes

come Jan.!!!!!!

R

Mom to Liam 12/12/00 ( Asthma,Hearing impaired, epilepsy,SGA, Food

allergies)

Jed 1/22/93 (Asthma)

Orlando Florida

October 17, 2005

- wow - that's great. Doesn't it just make you feel like you

are not " so alone " ? I'm glad you too had a pleasant experience. It

makes some of the grief a little easier to deal with sometime.

Thank you too for sharing.

- H

P.S. - How is Liam these days?

>

> I had a similar experience on Wednesday with Liam's Dentist. I

told her he

> had RSS and was talking about teeth problems etc.. She asked for

the Magic

> website, I gave it to her. And was asking all kind of questions

about RSS,

> teeth and GHD etc... Then the mother of the girl in the next chair

came to

> me and said " I don't want you to think I was listening to your

conversation

> but my ears perked when I heard RSS, then Magic foundation.... "

Well, she

> is on the magic GHD list, her daughter is GHD and has been on GH

for 5 years

> ..

>

> The dentist came over to us and then the other one did and we were

all

> talking and they were very interested in learning more...

>

> Too bad I am going to have to switch dentists, because of

insurance changes

> come Jan.!!!!!!

>

> R

> Mom to Liam 12/12/00 ( Asthma,Hearing impaired, epilepsy,SGA, Food

> allergies)

> Jed 1/22/93 (Asthma)

>

> Orlando Florida

>

October 17, 2005

,

Maybe instead of CHAT or VENT we should have a title EXPERIENCE or

something. I tried to reply to you for your reply to me and hit a

wrong button that wiped it out and left me with nothing, so I gave

up. But this was a good post and I just wanted to reply again.

Thank YOU for your kind words earlier. You are so up with everything

and everyone and have such nice and positive things to say.

Hey I just have to ask at the risk of sounding stupid ...what is dh?

I keep trying to think what it means but had to ask.

Dawna

>

> I wasn't sure if this was a chat or not - so, if I've failed to

post

> this properly - my apologies!

>

> I wanted to share something positive with my whole experience with

> Ian - something that may be able to benefit others in our efforts

to

> teach our physicians about RSS.

>

> When I was in the emergency room - I had brought my files with me -

> of which I have a complete set for Dr. H at home for our

appointment

> on Thursday - and in these files are all of Ian's medical records.

> But, more importantly, I had brought a few things that I had pulled

> off the MAGIC website that I immediately shared with the ER docs,

> Nurses, Pediatric Unit physician and Ped Nurses. I couldn't

beleive

> the overwhelming response I recieved. All of the individuals I

> shared this information with were actually VERY happy that I shared

> it with them. They ALL said that it helped them to understand RSS

> and help them to take care of his needs while he was there. As a

> matter of fact, EVERY person I shared it with told me after the

fact

> that they " looked up MAGIC " on the internet and read even more.

> They all came to see Ian in his room - just so they could get

> a " better look " at him and learn more about his condition. These

> are physicians! These are Nurses! I was so happy. The staff at

> this hospital really wanted to learn about RSS and were so willing

> to be " directed " with Ian's care as opposed to only telling me what

> to do. It was the best experience at a hospital I have ever had.

> (I even had a future job offer by one of the VP's! - LOL another

> story) But, I'm sharing this to let you know - that not every

> physician or nurse out there will be as willing to learn - but,

it's

> always worth a try to give them the option. By bringing with me

> Jodie Zwain's e-mail on Saturday, info from MAGIC - it also made

> them realize that I'm serious about my son's healthcare and want

> them to be just as serious. I was treated like a Queen and Ian was

> treated like a Prince. I reminded everyone there that RSS just

> isn't about " being short " - there are so many other things we must

> be in tune with and they all agreed. I think I even made my

> Pediatrician realize (after seeing his blood sugar at 48) was that

> maybe her other RSS patients (if there really are any in her

> practice - she sais there are) are not being monitored the way they

> should?? Who knows. But, I think I made an impression.

>

> Just a little something positive to remind us that during all these

> stressful and difficult times - there is some positive out there.

>

> My best to all of those who are dealing with difficult times right

> now. I'm there with you and in your thoughts.

>

> - Hugs.

>

> - H

>

October 17, 2005

Dawna - well- I'm off to bed (it's only 8pm - but, I'm getting a

head start on the week! LOL) and thought I would respond really

quick. DH means dear husband. I'm not as experienced with the

computer posting lingo as some of the people here - but, I use what

I remember <grin>. Glad to know my post affected you positively.

We have a big week ahead of us and I'm off to get some sleep. I've

been incredibly and persistently procrastinating about going to New

York this week to see Dr. H. I'm not hesitant about the

appointment - I just HATE traveling. I'm fine once I get somewhere -

but, I hate getting there. I'm not even sure when I'm dropping

off to my cousins this week! She's hard to get in touch

with too - she's a lawyer for a big firm in Washington DC and if

she's not working - she's off traveling to see family and friends.

Anyway, I better go - I just realized I better give her a quick

call - and I've got to get a drink ready for Ian - I'm waking him up

in the middle of the night to drink something.

Thanks again.

- H

> >

> > I wasn't sure if this was a chat or not - so, if I've failed to

> post

> > this properly - my apologies!

> >

> > I wanted to share something positive with my whole experience

with

> > Ian - something that may be able to benefit others in our

efforts

> to

> > teach our physicians about RSS.

> >

> > When I was in the emergency room - I had brought my files with

me -

> > of which I have a complete set for Dr. H at home for our

> appointment

> > on Thursday - and in these files are all of Ian's medical

records.

> > But, more importantly, I had brought a few things that I had

pulled

> > off the MAGIC website that I immediately shared with the ER

docs,

> > Nurses, Pediatric Unit physician and Ped Nurses. I couldn't

> beleive

> > the overwhelming response I recieved. All of the individuals I

> > shared this information with were actually VERY happy that I

shared

> > it with them. They ALL said that it helped them to understand

RSS

> > and help them to take care of his needs while he was there. As

a

> > matter of fact, EVERY person I shared it with told me after the

> fact

> > that they " looked up MAGIC " on the internet and read even more.

> > They all came to see Ian in his room - just so they could get

> > a " better look " at him and learn more about his condition.

These

> > are physicians! These are Nurses! I was so happy. The staff

at

> > this hospital really wanted to learn about RSS and were so

willing

> > to be " directed " with Ian's care as opposed to only telling me

what

> > to do. It was the best experience at a hospital I have ever

had.

> > (I even had a future job offer by one of the VP's! - LOL another

> > story) But, I'm sharing this to let you know - that not every

> > physician or nurse out there will be as willing to learn - but,

> it's

> > always worth a try to give them the option. By bringing with me

> > Jodie Zwain's e-mail on Saturday, info from MAGIC - it also made

> > them realize that I'm serious about my son's healthcare and want

> > them to be just as serious. I was treated like a Queen and Ian

was

> > treated like a Prince. I reminded everyone there that RSS just

> > isn't about " being short " - there are so many other things we

must

> > be in tune with and they all agreed. I think I even made my

> > Pediatrician realize (after seeing his blood sugar at 48) was

that

> > maybe her other RSS patients (if there really are any in her

> > practice - she sais there are) are not being monitored the way

they

> > should?? Who knows. But, I think I made an impression.

> >

> > Just a little something positive to remind us that during all

these

> > stressful and difficult times - there is some positive out there.

> >

> > My best to all of those who are dealing with difficult times

right

> > now. I'm there with you and in your thoughts.

> >

> > - Hugs.

> >

> > - H

> >

>

October 17, 2005

What did you pull off the Magic site? I'd like to get it too. Mind

you that darn site tests my patience like no other!!! There must be

some secret to getting the RSS page. But all I know is if I click on

Silver Syndrome I get sent to some other syndrome. Then I

find the RSS picture and click on that, and still get sent to some

other site.

I can only access parts of the RSS site by going in via another site

and cross referencing. But I am missing a ton of the information

because I can't access it!! Add that to my list of GRRRRRs tonight!.

Deb