Re: Conference: Just got back

[Guest guest]

-

From the keyboard of JEFFREY FOLEY:

> Okay guys, I hope everyone had a great time at the conference!! At least b=

> etter than I did.....

I'm sorry it was such a bust for you!! I know you were looking forward

to it so much and had such high hopes for your husband. I'm sure the

next one will be better (especially since you'll plan better :-).

Hugs,

Debbie

--

+== Debbie Tropiano == Mommy to 8/17/95 & ^Sara^ 10/25/00-11/7/00 ==+

| God shows His opposition to cancer and birth defects, not by |

| eliminating them or making them happen only to bad people (He |

| can't do that), but by summoning forth friends and neighbors to |

| ease the burden and to fill the emptiness. -- Harold S. Kushner |

+== debbie@... ============= URL http://www.icus.com/personal.html ==+

[Guest guest]

I am also sorry that it was not what you had hoped for, but you seem

to know what to do in the future! For me, I did not know what to expect,

and I am very happy to say that it was so much more than I could have

imagined. I loved it from the first moment I stepped inside the hotel

lobby and spotted these wonderful CHARGE kids with their families--it was so

cool. I really felt like we found a place we belong! I was so excited to

meet people from the list that I have been reading about these last nine

months, and wow, there was just so many people there. Like Brown

said, I do think it is going to take some time for the whole experience to

sink in. We just got home and I have been laying on the floor in front of

the fan with Rose---who is so happy to be home rolling around in her usual

space----she rolled right over to me on purpose--anyway I am so tired I must

go to bed early. But first thank you all for the wonderful experience and

for being so open with yourselves--it has been a joy.

Beckett-mom to Rose with CHARGE 9mos and Henry age 3

>

>Reply-To: CHARGE

>To: <CHARGE >

>Subject: Conference: Just got back

>Date: Sun, 22 Jul 2001 21:25:43 -0400

>

>Okay guys, I hope everyone had a great time at the conference!! At least

>better than I did..... I spent 8 hours on Friday in the ER at an Indy

>Hospital with my son ... We thought his appendix had ruptured but we

>found out it was just a weird strain of strep... High fever, abdominal

>pains, no appetite, etc... So I missed the ENTIRE part of the conference

>Friday....... Saturday was better, until at the CHARGE picnic... Jillian

>came down with the fever and abdominal pain, so i got got Kim Blake to look

>at her throat and she puked her meal up (good thing actually... she didn't

>need that hotdog in her tummy!!!) Her throat was also red... so we left

>the picnic... (As did everyone else at the same time because of the thunder

>storm) On the way home from the conference Jillian's fever spiked to

>104*...... so our weekend wasn't too fun!!!!

> I wish i had spent more time with my CHARGE family, but I did learn one

>thing... when I need my CHARGE family, I will NEVER bring my " other family "

>with me!!! (husband)....... I will attend conferences on my own from here

>on out!!!! I enjoyed seeing the people I did see and meeting a few

>others!!!

> I met the man from Australia who has also had 2 CHARGE kids so that was

>interesting!!!..

>I didn't even take an entire roll of film due to all my " medical " problems

>with kids and having to pacify my husband with time spent with the

>family.... So 2003... look out for me in Cleveland, because I plan on

>making that much better than this experience was for me!!!!

> Other than my personal problems, the conference was AWESOME!!!!!!

>

> Foley,

> Mom to 5, ( CHARGE in heaven) and Jillian 3 cHaRGE

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

,

I am so sorry about all the horrible stuff that happened while you were there. I'd heard about , but was wandering around wondering where you were Sunday when someone told me about Jillian! Give the kids a hug and we'll have a grand time in Cleveland (all the mom-onlys!!!!) This is one reason I can't bring Kennedy, it'd just be the time she'd get sick and I'd have to sell my soul to someone to get the money to pay the hospital bills south of the border!

Take care,

Conference: Just got back

Okay guys, I hope everyone had a great time at the conference!! At least better than I did..... I spent 8 hours on Friday in the ER at an Indy Hospital with my son ... We thought his appendix had ruptured but we found out it was just a weird strain of strep... High fever, abdominal pains, no appetite, etc... So I missed the ENTIRE part of the conference Friday....... Saturday was better, until at the CHARGE picnic... Jillian came down with the fever and abdominal pain, so i got got Kim Blake to look at her throat and she puked her meal up (good thing actually... she didn't need that hotdog in her tummy!!!) Her throat was also red... so we left the picnic... (As did everyone else at the same time because of the thunder storm) On the way home from the conference Jillian's fever spiked to 104*...... so our weekend wasn't too fun!!!!

I wish i had spent more time with my CHARGE family, but I did learn one thing... when I need my CHARGE family, I will NEVER bring my "other family" with me!!! (husband)....... I will attend conferences on my own from here on out!!!! I enjoyed seeing the people I did see and meeting a few others!!!

I met the man from Australia who has also had 2 CHARGE kids so that was interesting!!!..

I didn't even take an entire roll of film due to all my "medical" problems with kids and having to pacify my husband with time spent with the family.... So 2003... look out for me in Cleveland, because I plan on making that much better than this experience was for me!!!!

Other than my personal problems, the conference was AWESOME!!!!!!

Foley,

Mom to 5, ( CHARGE in heaven) and Jillian 3 cHaRGE5th International CHARGE Syndrome Conference, Indianapolis, Indiana,July20-22, 2001. Information is available at our websitewww.chargesyndrome.org or by calling 1-.For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

ACK, that poor little thing. I hope they get rid of it soon and all the other little kiddos in their "groups" don't come down with it. Please give them a hug from us,

Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Conference: Just got back

Okay guys, I hope everyone had a great time at the conference!! At least better than I did..... I spent 8 hours on Friday in the ER at an Indy Hospital with my son ... We thought his appendix had ruptured but we found out it was just a weird strain of strep... High fever, abdominal pains, no appetite, etc... So I missed the ENTIRE part of the conference Friday....... Saturday was better, until at the CHARGE picnic... Jillian came down with the fever and abdominal pain, so i got got Kim Blake to look at her throat and she puked her meal up (good thing actually... she didn't need that hotdog in her tummy!!!) Her throat was also red... so we left the picnic... (As did everyone else at the same time because of the thunder storm) On the way home from the conference Jillian's fever spiked to 104*...... so our weekend wasn't too fun!!!!

I wish i had spent more time with my CHARGE family, but I did learn one thing... when I need my CHARGE family, I will NEVER bring my "other family" with me!!! (husband)....... I will attend conferences on my own from here on out!!!! I enjoyed seeing the people I did see and meeting a few others!!!

I met the man from Australia who has also had 2 CHARGE kids so that was interesting!!!..

I didn't even take an entire roll of film due to all my "medical" problems with kids and having to pacify my husband with time spent with the family.... So 2003... look out for me in Cleveland, because I plan on making that much better than this experience was for me!!!!

Other than my personal problems, the conference was AWESOME!!!!!!

Foley,

Mom to 5, ( CHARGE in heaven) and Jillian 3 cHaRGE5th International CHARGE Syndrome Conference, Indianapolis, Indiana,July20-22, 2001. Information is available at our websitewww.chargesyndrome.org or by calling 1-.For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

-

From the keyboard of JEFFREY FOLEY:

> I have had Jillian at the doctor for the past 2 days since we have been ba=

> ck. Ic an't get rid of her 102-104 fever and she had the severe abdoninal c=

> ramping all night last night and they did X-rays of her tummy and chest. It=

> just must be some WICKED virus they got and I hope nobody else gets it!!!

Oh!! Poor Jillian!! (And poor mommy!! :-)

I hope she gets better soon.

Hugs,

Debbie

--

+== Debbie Tropiano == Mommy to 8/17/95 & ^Sara^ 10/25/00-11/7/00 ==+

| God shows His opposition to cancer and birth defects, not by |

| eliminating them or making them happen only to bad people (He |

| can't do that), but by summoning forth friends and neighbors to |

| ease the burden and to fill the emptiness. -- Harold S. Kushner |

+== debbie@... ============= URL http://www.icus.com/personal.html ==+

[Guest guest]

Jacque,

What beautiful thoughts. Yes, it was a wonderful conference. You must promise

us for next

time to share a meal uninterrupted by thunderstorms, tornadoes etc.

;-D

Anne, mom of Penina

[Guest guest]

Please let us know if you can get it on your web page I would love to read it.

Murray

[Guest guest]

jackie, it was good to meet you, sorry we didn't get to talk more. maria

Re: Conference: Just got back

> Hello everyone! I wanted to add my thoughts about the conference to the

list

> and share the awe and enthusiasm that I saw in all the other families and

> professionals. First, , I hope that your kids get better! That had

to

> be extremely stressful!! I agree with your decision to travel solo in two

> years!!

>

> Two years ago, I was able to attend my first conference in Houston and I

was

> both excited and terrified at what I might find -- maybe Austin was much

more

> involved than other children, maybe I would cry the whole time, etc. I

was

> apprehensive but excited -- a definite mix of many emotions! I took

Austin

> (who was 4 at that time), my daughter, , who was one and a half

years,

> and my mom. We got a direct flight to Houston and had no travel problems

> (except that we were traveling with more luggage and medical equipment

than

> should be allowed!) Anyway, I got to Houston and felt like I was " HOME " .

I

> saw beautiful children, just like my Austin, and met wonderful families

and

> caring professionals. The drawback was that I was not able to attend the

> meetings and after hour gatherings much because I could not leave Austin

in

> day care.

>

> My mom and I both loved the conference, though, and she suggested I go to

the

> next one sans husband and kids so I could take in and experience as much

as I

> possibly could. Well, this year that happened! I met so many wonderful

> families and talked in much more depth and length with families that I've

> corresponded with for 5 years now, as Casey reminded me with a big hug at

the

> start of the conference!

>

> The Board of Directors, the medical professionals, the volunteers, the

> educators and the families and children who made this conference such a

> unique and wonderful experience deserve much kudos and hugs and admiration

> from all of us who attended. I will forever be touched by Brown's

> moving keynote, quick humor and selfless dedication to our Chargers. I am

> impressed and in awe that so many doctors and professionals keep coming

back

> and doing research and have such a deep passion for our children and for

our

> families. We meet so many doctors in our day-to-day lives who don't take

the

> time to really get to know our children that I really want to thank those

who

> work so hard for our kids.

>

> I felt like a new parent at the conference because I could fully

participate

> and interact and meet other families! I loved it and I am so re " charged "

now

> so to speak. To all my wonderful new friends and their beautiful

children, I

> am so happy we got to spend some time together and I hope we can support

and

> encourage and correspond with each other over the next two years before we

> gather again. I wish I got to talk to you all and I hope to continue to

meet

> more families. I saw so many people I recognized but never got to talk to

> and I met so many more that I never even knew about.

>

> The conference was a huge success and an outstanding job was done by all

the

> volunteers on the Board. I am now on two committees and can't wait to

join

> in to help this amazing foundation help some pretty amazing kids!

>

> I will stop rambling for now but I just had to share. Take care everyone

and

> see you at the next CHARGE conference in Ohio!

>

> Jacque Clifton

> mom to Austin, 6 year old CHaRgE and , 3 years

> wife to Steve

>

>

> In a message dated 7/24/01 12:13:07 PM Central Daylight Time,

> gweir@... writes:

>

> << ,

> I am so sorry about all the horrible stuff that happened while you were

> there. I'd heard about , but was wandering around wondering where

you

> were Sunday when someone told me about Jillian! Give the kids a hug and

> we'll have a grand time in Cleveland (all the mom-onlys!!!!) This is one

> reason I can't bring Kennedy, it'd just be the time she'd get sick and I'd

> have to sell my soul to someone to get the money to pay the hospital bills

> south of the border!

> Take care, >>

>

>

> 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,

> July

> 20-22, 2001. Information is available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

>

>