RE: Re: Medications that work

[Guest guest]

We are in New Jersey.

Re: Re: question for Illinois CHARGE moms

Crystal,

I live in Pekin, just outside of Peoria. I know how scary it can be to leave

your little one and go so far out of town when she is so young, but I know

from experience it helps to get away. When was an infant, I was asked

to go to a cranial facial meeting in Chicago to represent Central Illinois

families. It was nice to get away for a day and visit with other families

dealing with some of the same issues. I think you will find that going to

the workshop will be a refreshing break. And you are doing all of this to

help little Eva.

If you go to the Philip J. Rock Center/Project Reach website, you could

print out something for some of the professionals.

http://project-reach-illinois.org/index.html

If you go to the calender of events, it lists the workshops and a brief

description.

If you don't have the CHARGE manual from the CHARGE Foundation, I would

recommend getting it. I think it is $25 for the manual and it is full of

information. wasn't diagnosed with CHARGE until March of 2005 and I

ordered it shortly after that. It has pages to give to professionals.

's therapists used it to learn about CHARGE. They have all been very

interested in learning as much as they can about CHARGE. I read the manual

after receiving it and I feel that it contributed in a big way to saving

. She had an H type TE Fistula that had never been detected and when I

read about it in the manual, I started talking to all her doctors about it

because she was having a lot of problems. Finally, I found one of her

doctors that would listen to me and look for it. Sure enough, it was there

and has made many improvements since it has been repaired. Her ENT

told us that it was a huge hole and that we are lucky to still have her with

us after 2 yrs of it not being

detected. Nobody was looking for something like that.

Things do get better over time. will be 3 on Feb. 17th and she is

doing wonderful. We still have issues to deal with but mostly they are

behaviors and strange little things that she does. Most of the medical stuff

is in the past. She is walking, trying to eat by mouth, talking some and

signing up a storm. A year ago, I would not have imagined we would be were

we are today. We would not be were we are today if I had not been able to

get my hands on some of the information regarding CHARGE.

I hope some of this helps to ease your worries. Let me know if you want to

try to meet up to drive part way together.

Lee

Mom to 2 1/2 yrs CHARGE and my mean girl, Marissa 4 1/2 yrs - my

girly girl (who cut her own hair off last Friday), & Dalani - 9 1/2 yrs - my

little tomboy

supermama95 wrote:

,

That would be awsome, where do you live? What town? If the driving

thing doesnt work at least having someone to sit with and talk to

will be great!!

I am new at all of this and my mind is just swimming with info.

Thanks,

Crystal and Eva (8 month charger)

> >>

> >> To clarify -- this will not be the " Meg and Michele " show. It's

> > an IL DB

> >> professional presenting CHARGE using Meg's Powerpoint

presentation

> > followed

> >> by me doing my family story. It's Meg's info -- but not Meg.

Not

> > exactly

> >> the same thing.

> >>

> >> Michele

> >> Re: question for Illinois CHARGE moms

> >>

> >>

> >> > Guys, I would drive hours just to hear and see Meg and

> > . They're

> >> > great and well worth it.

> >> >

> >> > Plus there is that networking thing that's vital to everyone

too.

> >> >

> >> > Go if you can!

> >> >

> >> >

> >> > Bonnie, mom to a 23, Patty CHARGE 21, and wife to

> >> >

> >> >

> >> >