Re: Re: question for Illinois CHARGE moms

[Guest guest]

Crystal-

Except for the drive -- you won't be alone. I'll be there even tho I won't

be able to sit with you. Maybe you can get one of Eva's specialists to go

too. Wouldn't that be cool? The invite to stay here the night before

remains. Just let me know if that ends up working for you.

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

>> >

>> >

>> >

[Guest guest]

Crystal,

Michele is right. You won't be alone. I plan on attending as well and you are

also welcome to stay with me the night before. Or, I live in central IL so maybe

we could meet up and I could drive the rest of the way there. Whatever the

outcome, I would be more than happy to sit with you during the workshop. Just

let me know.

Lee

Mom to 2 1/2 yrs.

Michele Westmaas wrote:

Crystal-

Except for the drive -- you won't be alone. I'll be there even tho I won't

be able to sit with you. Maybe you can get one of Eva's specialists to go

too. Wouldn't that be cool? The invite to stay here the night before

remains. Just let me know if that ends up working for you.

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

>> >

>> >

>> >

[Guest guest]

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

> >> >

> >> >

> >> >

[Guest guest]

Let me see if I can get one emailed to you -- If that's unsuccessful, ask

Project Reach for them.

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

>> >> >

>> >> >

>> >> >

[Guest guest]

and Crystal-

Even if only the 3 of us were there, it would be a worthwhile day!! So

having a room full of other professionals and parents plus Project Reach

folks will just be icing on the cake!

Crystal -- I can't tell you how powerful it will be to meet other CHARGE

parents. isn't too far ahead of you with so her experience is

still fresh. You too will have a hard time listening because you'll want to

be talking. Might be a good idea to both bring photos along to share with

each other (and participants if you're willing). At the last training, we

took time for all the families in attendance to share their stories briefly.

You may want to think in advance about that and bring any " visuals " that

you'd like or materials that have been helpful to you along the way.

Gosh -- Now I'm getting pretty excited about the day. Wish it were sooner

than March!

Michele

[Guest guest]

Meg-

Thanks for sharing that date. I knew there were more, but I didn't have the

schedule. I guess it's available on line with the link posted. I

sure wish we could keep our team in tact in IL!

Michele