Good idea

[Guest guest]

Definitely a good idea, Crystal. I'll be doing the same soon for to

have to hand out.

She may be apartment living next fall while attending college. Although I

did hear her mention SAT's. hmm. I thought she wouldn't need them for a

community college...have to find out.

She'd never get the whole spiel out. And YES, it's aggravating to say it

all over and over and over and......

in Ma. (, 21 yrs)

[Guest guest]

While I am waiting here for Dan to call on when I can come and get

himand Eva from the hospital I decided to type out Eva's health

history and everything she has had done and when she was in the

hopsital and such. I even typed out what CHARGE is and printed it.

While I was at the ER I had so many doctors and nurses asking me what

CHARGE was and I dont know how many times I had to explain it but I

was getting annoyed. So now I will be keeping a copy of her history

with me and with my parents and who ever else maybe watching her. This

way they just have to read it and know everything with out me telling

them and also if it forget to tell them something it wont be a bad

thing because they will have the paper. I think its a great idea and I

will feel better with other people besides me and my mom watching her.

Has anyone else done this?? We were at a hospital we have never been

to and so they dont know anything about her.

Thanks,

Crystal mom to (10), (3), and Eva (17 month old CHARGEr)

wife to Dan

[Guest guest]

It is a great idea...but I bet you will be surprised by how many people will

take the paper, stick it in the chart, and then turn around and still ask you

the same questions that have been answered on the paper.

I always bring in an updated, typed list of Evan's medications (concentrations

& doses), all his feeding information (formula type and strength, volume), and

all his CPAP info (oxygen concentration, flow rate). It always AMAZES me how a

nurse can take that list and two minutes later hand me a form to fill out all

his meds. Number one, my sheet has the EXACT same info, but number 2--they just

took my cheat sheet! I can't keep all that in my head.

Anyway, I don't mean to put a damper on you idea because I think it is a good

one. But things might not change as much as you would like them too!

(mom to Evan, 14.5 months)

supermama95 wrote:

While I am waiting here for Dan to call on when I can come and get

himand Eva from the hospital I decided to type out Eva's health

history and everything she has had done and when she was in the

hopsital and such. I even typed out what CHARGE is and printed it.

While I was at the ER I had so many doctors and nurses asking me what

CHARGE was and I dont know how many times I had to explain it but I

was getting annoyed. So now I will be keeping a copy of her history

with me and with my parents and who ever else maybe watching her. This

way they just have to read it and know everything with out me telling

them and also if it forget to tell them something it wont be a bad

thing because they will have the paper. I think its a great idea and I

will feel better with other people besides me and my mom watching her.

Has anyone else done this?? We were at a hospital we have never been

to and so they dont know anything about her.

Thanks,

Crystal mom to (10), (3), and Eva (17 month old CHARGEr)

wife to Dan

---------------------------------

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[Guest guest]

Oh I wouldnt be surprised but this way I have it on hand incase I

forget something too. Also all the times she was hospitalized and

all and I know I wont remember all that as the years go on.

I know how hospitals are and how stupid they can be sometimes.

Thanks !!

Crystal and Eva

> While I am waiting here for Dan to call on when I can

come and get

> himand Eva from the hospital I decided to type out Eva's health

> history and everything she has had done and when she was in the

> hopsital and such. I even typed out what CHARGE is and printed it.

> While I was at the ER I had so many doctors and nurses asking me

what

> CHARGE was and I dont know how many times I had to explain it but

I

> was getting annoyed. So now I will be keeping a copy of her

history

> with me and with my parents and who ever else maybe watching her.

This

> way they just have to read it and know everything with out me

telling

> them and also if it forget to tell them something it wont be a bad

> thing because they will have the paper. I think its a great idea

and I

> will feel better with other people besides me and my mom watching

her.

> Has anyone else done this?? We were at a hospital we have never

been

> to and so they dont know anything about her.

>

> Thanks,

> Crystal mom to (10), (3), and Eva (17 month old

CHARGEr)

> wife to Dan

>

>

>

>

>

>

> ---------------------------------

> How low will we go? Check out Yahoo! Messenger's low PC-to-Phone

call rates.

>

>

[Guest guest]

yeah loved that idea we donno y we nevder did it i guess with me so many

knew bout charge coz when i went in they allways might of look after me the

last time LOL

>

> Definitely a good idea, Crystal. I'll be doing the same soon for

> to

> have to hand out.

> She may be apartment living next fall while attending college. Although I

> did hear her mention SAT's. hmm. I thought she wouldn't need them for a

> community college...have to find out.

> She'd never get the whole spiel out. And YES, it's aggravating to say it

> all over and over and over and......

> in Ma. (, 21 yrs)

>

>

[Guest guest]

Crystal:

I did that when we were in and out of the hospital so much. You are right

in that it gets very annoying when you are trying to focus on your child's

particular problem at that moment; but everyone wants to know the history

plus what CHARGE is all about. We got to a point that Rick would shake

hands with the docs coming through the door, and I'd shove a paper in their

hands when they reached for mine!

I will tell you it also comes in handy down the road - when you haven't had

to repeat that stuff over and over for a while - because you start to forget

ages or dates that procedures were done.

This is such a great idea, that I went ahead and did one for Ken and myself.

(Guess I better get one done for Rick sometime!)

I give a new copy to grandparents each year, along with an authorization for

emergency treatment. The kids are often at grandparents', and they live and

hour-and-a-half north of us. Nice to know they have power to authorize

treatment in an emergency.

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

Good idea

While I am waiting here for Dan to call on when I can come and get

himand Eva from the hospital I decided to type out Eva's health

history and everything she has had done and when she was in the

hopsital and such. I even typed out what CHARGE is and printed it.

While I was at the ER I had so many doctors and nurses asking me what

CHARGE was and I dont know how many times I had to explain it but I

was getting annoyed. So now I will be keeping a copy of her history

with me and with my parents and who ever else maybe watching her. This

way they just have to read it and know everything with out me telling

them and also if it forget to tell them something it wont be a bad

thing because they will have the paper. I think its a great idea and I

will feel better with other people besides me and my mom watching her.

Has anyone else done this?? We were at a hospital we have never been

to and so they dont know anything about her.

Thanks,

Crystal mom to (10), (3), and Eva (17 month old CHARGEr)

wife to Dan

CHARGE SYNDROME LISTSERV PHOTO PAGE:

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Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

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CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Hey Crystal,

That is exactly what I did for myself when Hayley goes to Emergency or anywhere

for that matter. It has made my life so much easier in that respect that I can

just get her diary out and get the information and say read to your heart is

content. I have done it so there should be NO or very little questions,

especially for the students on internship that we seem to strike each time we

land at Emergency or doctors.

Mum to Hayley 2.5yrs

Australia, NSW

Good idea

While I am waiting here for Dan to call on when I can come and get

himand Eva from the hospital I decided to type out Eva's health

history and everything she has had done and when she was in the

hopsital and such. I even typed out what CHARGE is and printed it.

While I was at the ER I had so many doctors and nurses asking me what

CHARGE was and I dont know how many times I had to explain it but I

was getting annoyed. So now I will be keeping a copy of her history

with me and with my parents and who ever else maybe watching her. This

way they just have to read it and know everything with out me telling

them and also if it forget to tell them something it wont be a bad

thing because they will have the paper. I think its a great idea and I

will feel better with other people besides me and my mom watching her.

Has anyone else done this?? We were at a hospital we have never been

to and so they dont know anything about her.

Thanks,

Crystal mom to (10), (3), and Eva (17 month old CHARGEr)

wife to Dan

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[Guest guest]

Crystal-

I have a list of all of Aubrie's specialists, diagnoses, and

hospitalizations. And I have much of her documentation scanned into .pdf

files. I don't carry it with me, but when needed, I can produce things

pretty quickly. I started the lists ages ago. When we went to Perkins for

an eval, they needed all her documentation but it was tons of paper to copy

and mail. That's when I scanned everything. I've tried to keep up since

then. It's so handy to give a new doctor a CD with all her history on it.

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

supermama95

Sent: Thursday, October 05, 2006 11:13 AM

To: CHARGE

Subject: Good idea

While I am waiting here for Dan to call on when I can come and get

himand Eva from the hospital I decided to type out Eva's health

history and everything she has had done and when she was in the

hopsital and such. I even typed out what CHARGE is and printed it.

While I was at the ER I had so many doctors and nurses asking me what

CHARGE was and I dont know how many times I had to explain it but I

was getting annoyed. So now I will be keeping a copy of her history

with me and with my parents and who ever else maybe watching her. This

way they just have to read it and know everything with out me telling

them and also if it forget to tell them something it wont be a bad

thing because they will have the paper. I think its a great idea and I

will feel better with other people besides me and my mom watching her.

Has anyone else done this?? We were at a hospital we have never been

to and so they dont know anything about her.

Thanks,

Crystal mom to (10), (3), and Eva (17 month old CHARGEr)

wife to Dan

[Guest guest]

I actually do the same thing! My mom has a copy, as well as my in laws and

neighbors. In fact we leave for Disneyland on Sunday, and I just updated

everything. Her history, her hospital stays and procedures, her doctors and

specialists and their info, her current meds and her insurance information.

I also carry her first and last MRI's with me, as well, for baseline

information...just Incas a vacation turns into a nightmare! You can never be

too prepared!

, mommy to Meagan (CHaRgE) and 23 3/4 month twins, and big

brother 4 years, married to the best daddy in the world for 9 years!

-- Good idea

While I am waiting here for Dan to call on when I can come and get

himand Eva from the hospital I decided to type out Eva's health

history and everything she has had done and when she was in the

hopsital and such. I even typed out what CHARGE is and printed it.

While I was at the ER I had so many doctors and nurses asking me what

CHARGE was and I dont know how many times I had to explain it but I

was getting annoyed. So now I will be keeping a copy of her history

with me and with my parents and who ever else maybe watching her. This

way they just have to read it and know everything with out me telling

them and also if it forget to tell them something it wont be a bad

thing because they will have the paper. I think its a great idea and I

will feel better with other people besides me and my mom watching her.

Has anyone else done this?? We were at a hospital we have never been

to and so they dont know anything about her.

Thanks,

Crystal mom to (10), (3), and Eva (17 month old CHARGEr)

wife to Dan