Re: Re: CHARGE Blogs and Web Sites - Crystal, Amy M, M

[Guest guest]

Definitely fine with me ! I don't have a place on my blog (I don't

think) though that I can add links. Hmmm...

Anyway, do you all want me to encourage the Foundation to post links to the

family websites/blogs? I thought it would be really helpful for people trying

to learn more about CHARGE...less factual, more personal approach.

I just remember being soooo scared and feeling incredibly alone when I first

heard the diagnosis and I was having such a difficult time finding " personal "

stories...I want to have new families understand right away that you can truly

find happiness with your child, regardless of any " kinks " in their body, it just

requires some medical intervention, patience, LOTS and LOTS of love, and time!!!

Key Storrs wrote:

That's a great idea Crystal--I had never thought of adding other kids' pages

under the Favorite Links section. You can add Evan

(http://www.babysites.com/sites/skeybunny/)

I'll put a link to Eva's on ours (and Max's and Cedie's if it's OK with you

guys)

Mom to CHARGEr Evan - 8.5 mos and 1st tooth yesterday!

supermama95 wrote:

I have a page for Eva as most of you know and I if anyone wants me

to add their page to her group I would be glad to just let me know

the site address!! I know my friends and family would love to see

more CHARGERS and how things are going for them.

Crystal and Eva (1st birthday in 4 days CHARGER)

http://www.babysites.com/sites/crystalm1476/

> > >

> > > Hello everyone!!!

> > >

> > > It seems like more and more CHARGE families are having websites

> > and blogs dedicated to their little one's progress...as well as

> > adult CHARGErs chronicling (sp?) their lives. I absolutely love

> > this and think how wonderful it would have been to read some of

> > these when Max was first diagnosed. I remember having a very

> > difficult time locating personal stories.

> > >

> > > What does everything think about having a list of CHARGE

> > personal sites linked to the CHARGE foundation website? I think

> > reading about the parent's love of their CHARGE child and reading

> > about an adult's success would be very encouraging for a

families.

> > >

> > > Just a thought!

> > >

> > >

> > > Amy McKinley

> > > Mom to MIGHTY MAX (CHARGE, 9 months old, 7 months corrected)

> > > maxupdate.blogspot.com

> > >

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

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

Phone

> > call rates.

> > >

> > >

[Guest guest]

Definitely fine with me ! I don't have a place on my blog (I don't

think) though that I can add links. Hmmm...

Anyway, do you all want me to encourage the Foundation to post links to the

family websites/blogs? I thought it would be really helpful for people trying

to learn more about CHARGE...less factual, more personal approach.

I just remember being soooo scared and feeling incredibly alone when I first

heard the diagnosis and I was having such a difficult time finding " personal "

stories...I want to have new families understand right away that you can truly

find happiness with your child, regardless of any " kinks " in their body, it just

requires some medical intervention, patience, LOTS and LOTS of love, and time!!!

Key Storrs wrote:

That's a great idea Crystal--I had never thought of adding other kids' pages

under the Favorite Links section. You can add Evan

(http://www.babysites.com/sites/skeybunny/)

I'll put a link to Eva's on ours (and Max's and Cedie's if it's OK with you

guys)

Mom to CHARGEr Evan - 8.5 mos and 1st tooth yesterday!

supermama95 wrote:

I have a page for Eva as most of you know and I if anyone wants me

to add their page to her group I would be glad to just let me know

the site address!! I know my friends and family would love to see

more CHARGERS and how things are going for them.

Crystal and Eva (1st birthday in 4 days CHARGER)

http://www.babysites.com/sites/crystalm1476/

> > >

> > > Hello everyone!!!

> > >

> > > It seems like more and more CHARGE families are having websites

> > and blogs dedicated to their little one's progress...as well as

> > adult CHARGErs chronicling (sp?) their lives. I absolutely love

> > this and think how wonderful it would have been to read some of

> > these when Max was first diagnosed. I remember having a very

> > difficult time locating personal stories.

> > >

> > > What does everything think about having a list of CHARGE

> > personal sites linked to the CHARGE foundation website? I think

> > reading about the parent's love of their CHARGE child and reading

> > about an adult's success would be very encouraging for a

families.

> > >

> > > Just a thought!

> > >

> > >

> > > Amy McKinley

> > > Mom to MIGHTY MAX (CHARGE, 9 months old, 7 months corrected)

> > > maxupdate.blogspot.com

> > >

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

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

Phone

> > call rates.

> > >

> > >

[Guest guest]

yeah amy id love yo to do that and your right about love and time all new

parents would love it im sure id love to meet you and max

>

> Definitely fine with me ! I don't have a place on my blog (I

> don't think) though that I can add links. Hmmm...

>

> Anyway, do you all want me to encourage the Foundation to post links to

> the family websites/blogs? I thought it would be really helpful for people

> trying to learn more about CHARGE...less factual, more personal approach.

>

> I just remember being soooo scared and feeling incredibly alone when I

> first heard the diagnosis and I was having such a difficult time finding

> " personal " stories...I want to have new families understand right away that

> you can truly find happiness with your child, regardless of any " kinks " in

> their body, it just requires some medical intervention, patience, LOTS and

> LOTS of love, and time!!!

>

>

>

>

> Key Storrs wrote:

> That's a great idea Crystal--I had never thought of adding other kids'

> pages under the Favorite Links section. You can add Evan (

> http://www.babysites.com/sites/skeybunny/)

> I'll put a link to Eva's on ours (and Max's and Cedie's if it's OK with

> you guys)

>

> Mom to CHARGEr Evan - 8.5 mos and 1st tooth yesterday!

>

>

> supermama95 wrote:

> I have a page for Eva as most of you know and I if anyone wants me

> to add their page to her group I would be glad to just let me know

> the site address!! I know my friends and family would love to see

> more CHARGERS and how things are going for them.

>

> Crystal and Eva (1st birthday in 4 days CHARGER)

> http://www.babysites.com/sites/crystalm1476/

>

>

>

>

> > > >

> > > > Hello everyone!!!

> > > >

> > > > It seems like more and more CHARGE families are having websites

> > > and blogs dedicated to their little one's progress...as well as

> > > adult CHARGErs chronicling (sp?) their lives. I absolutely love

> > > this and think how wonderful it would have been to read some of

> > > these when Max was first diagnosed. I remember having a very

> > > difficult time locating personal stories.

> > > >

> > > > What does everything think about having a list of CHARGE

> > > personal sites linked to the CHARGE foundation website? I think

> > > reading about the parent's love of their CHARGE child and reading

> > > about an adult's success would be very encouraging for a

> families.

> > > >

> > > > Just a thought!

> > > >

> > > >

> > > > Amy McKinley

> > > > Mom to MIGHTY MAX (CHARGE, 9 months old, 7 months corrected)

> > > > maxupdate.blogspot.com

> > > >

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

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

> Phone

> > > call rates.

> > > >

> > > >