Re: new member requests help

[Guest guest]

Go Casey !!!!!!!!!!!!!!!!! We " ALL " will agree with you on that, " Ain't no

ones fault " !!!!!!

That neighbor needs to read more and speak less.

Debra

[Guest guest]

Debbie wrote:

>

>

> No, it was not a gestational

> brain injury, as far as I have been told by genetics, it is mostly a

> sporadic event and is gene related. I was very healthy when I had my

> son, did not fall, or even drink a sip of caffeine. There are some

> families who have had 2 children with CHARGE.

> Debbie Matasker mom to w/CHARGE 2, 4

Okay, I am still trying to understand the whole " why did this happen thing "

myself. I don't worry too much about it

because I realize it probably wasn't anything that I did and anyways there's

nothing that can be done about it,but I

still wonder. We found out when Josh was only 1 1/2 weeks old and so everything

was such a blur (still kind of is) and

I probably just misunderstood the whole thing. But basically what I remember

hearing (my memory at that point is not

very reliable)was that because it was not seen on his chromosome study that it

was not genetic. I do realize that it

could just be a small thing that they don't pick up on the study and genetically

this all makes sense. But I was

telling everybody that it was not genetic because that's what I thought I heard.

(Thank you Meg , and everyone else,

for setting this straight.) But I can't get it out of my head that it was

developmental and therefore caused by

something other than genetics. I guess I think it's more environmental or

something and I also thought that mabye it

could have been caused by an illness or something. (Barbara, I realize this is

not helping you get answers at all!! I

am rambling on because I am also trying to understand this so listen to

everybody else and not me) I guess I'll try to

believe the genetics thing because it makes a lot more sense and makes me feel

better and less worried. But I am

excited (as I know all of you are) for this research to be done. I am sorry for

going on about this, I sure wish I knew

for sure " why " this happened. It sounds like most of you have already accepted

this part of the whole thing and I guess

with time I probably will too. Just had to get all of that out!!

Also, I have heard that there are families with 2 children with CHARGE but that

it's rare for that to happen. I try not

to think about that but I know that when I have other children I will worry like

crazy about it. Just wanted to hear

from those of you whose CHARGEr's do have other younger siblings. Did you

worry?

mom to (4 mo.) CHaRGE and (2 years)

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> 23-25, 1999.

> For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

[Guest guest]

In a message dated 6/10/99 2:55:34 AM Eastern Daylight Time,

bryanorjenny@... writes:

<< Just wanted to hear

from those of you whose CHARGEr's do have other younger siblings. Did you

worry?

>>

,

Did I worry when I was pregnant w/ Zachary, 2 years later? I was such a pest

trying to make sure he didn't have Charge I think the Drs were more relieved

than I was when he was born normal! Back then I didn't know any other

Chargers well and certainly none that had sibs w/ Charge so it was easier not

to panic. Remember, the stats have not changed--the reoccurrence rates are

still very low--less than a 5% chance. The odds are definitely in your favor

if you want more kids. I had both kids at the same hospital so the NICU doc

remembered me and Destiny well. She was so happy Zachary was normal that she

took care if him personally while we were in the hospital together. She

quickly pronounced him healthy and sent us home w/ a smile. Here's another

thought--your risk for a Charge child was just as high (5%) when your older

child was born and he's fine. If you decide to have more try to remember that.

I know it is all so overwhelming now. It will get easier. It won't be this

confusing forever. I think Destiny was about 's age when I came across

my " What to Expect the First Year " that I had bought before she was born. I

was so mad at everything I threw it on the floor (along w/ everything else I

could find) and almost tore it to shreds. Common sense (AKA my husband)

stopped me and said we could use it for our next child who would be fine.

Then, and now, Destiny had her own schedule and way of doing things. It took

a while for us to adapt, but as time went on we did. And you know, I'm glad I

kept that book for when Zachary came along 2 years later.

Hang in there, . Back then we said we were in the trenches, like in war.

It's hard to see beyond the next minute, or day, but one day, when you are

not looking, you will climb out and the path ahead will be easier. Just wait.

You will make it, then look back and wonder how you ever did it.

Take care of yourself, too!

(Destiny 6 CHARgE, Zachary 4)

NYC

[Guest guest]

< Just wanted to hear

> from those of you whose CHARGEr's do have other younger siblings. Did you

> worry?

> >>

,

Hi. My husband Matt and I have twin boys who were born 7 years ago. The

pregnancy was relatively uneventful. My mom did pass away shortly before

they were born and I also was getting pretty swollen. I ended up toxic at

their birth.

Josh was born first and he was healthy. came 30 seconds later

(c-section) and it was immediately obvious that something was wrong. In the

beginning the only thing they were aware of was his heart problems. As the

weeks passed, more issues arose.

Now, 7 years later, we are at such a different place. walks pretty

well, considering his absent semi circular canals, and a coloboma in his

right eye. He is getting ready for 1st grade. That placement is up in the

air. just had an evaluation at Perkins and he's functioning at the 5

year old level! Awesome for a 7 year who the doctor's said could be

neurologically devastated.

When the boys were 4 and things had majorly settled down, Matt and I decided

that another would be *cool* " . Well, about that time, we were finally

approved to do state foster care and they immediately placed a 2 month old

with us. Oh well, we thought, let's hold off for a while. NOT! was

conceived shortly thereafter. Sam, our foster boy, was almost 11 months old

when was born. Boy was his nose out of joint!!

During the pregnancy we probably had more ultrasounds and more detailed

ultrasounds than when I was pregnant with the twins. Immediately upon birth,

experienced breathing difficulties and the neonatologist came. He took

her to the level II nursery. Matt told him about CHARGE and it turned out he

thought he remembered from 5 years earlier. He gave a thorough

once over and declared her breathing problem minor, and no sign of CHARGE!

What a relief!

What made us decide to take the risk? I think it may have been the desire

for a girl. However, now that I have

2 sons and a daughter, the thought of having another is just not there for me.

Janet

[Guest guest]

LJoyC@... wrote:

>

> From: LJoyC@...

>

> In a message dated 6/10/99 2:55:34 AM Eastern Daylight Time,

> bryanorjenny@... writes:

>

> << Just wanted to hear

> from those of you whose CHARGEr's do have other younger siblings. Did you

> worry?

> >>

>

>

,

I have an older daughter perfectly healthy who is 4 now. Then

came along exactly 2.5 years later to the day. was born Nov 8,

was born May 8 (he was suppose to be due May 31), how weird is

that? We always wanted 3 kids, and after , I deemed myself done

with the whole trying to have more kids thing.

However, as time passed, and things got easier with (although he

is still my major challenge), me and my husband decided that we should

go for what we really wanted. Having a third child we thought would be

good for everyone, and like I said, we really wanted 3 kids. I am now

33 weeks pregnant. I am scared as anything right now because I went

into preterm labor with at 33 weeks, however, this pregnancy has

been totally different. I feel great and am not full of fluid like I

was with . I will have her (yes, this one is a girl) in about 5

more weeks, a scheduled c-section. I have been frightened the whole

time but have had every test in the book which has put me a little more

at ease, but not much. Until I see her I will not be convinced that she

will be healthy, although all the doctors think she will be. I will let

everyone know when she is born.

Debbie Matasker mom to 2 w/CHARGE, 4

[Guest guest]

Debbie,

I have been thinking of you alot since you first told us the news. I hope

everything will go a -okay with the new baby. I can't wait til we get that

email! Have you got her name picked out yet, or is that a secret til she's

born?

Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir's homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>I will let everyone know when she is born.

>

>Debbie Matasker mom to 2 w/CHARGE, 4

[Guest guest]

--

Thank you!

I will probably be a pest too. I was with Josh and I didn't even have a clue of

the things that can really go wrong.

Now that I know more, I probably will bug my doctor more. :-) It's probably

early to start worrying about all of this

as I'm not planning to have another child for a few more years but I just had to

ask and get it off my mind. I liked

your story about " What to Expect the First Year " I lived by that thing with

but I havn't even looked at it with

Josh. I wish they had a " What to Expect with a CHARGEr " . I guess that's you

guys. <grin>

Debbie--

Congratulations on expecting your third! Sometimes when you know what can go

wrong you forget that most kids are born

healthy. When I had (my two year old) he was 9 lbs 13 ounces. No way did

I want another one, at least until I

forgot how bad it hurt. My delivery with Josh was simple even though he was 8

lbs 6 ounces. It was funny that I spent

so much time worrying about that. It will probably be the same with the next

one. Probably when things get easier

(as you said) and I forget.

Janet--

I'm glad was okay. What a scare!!

Thanks!!

mom to (4 1/2 mo) CHaRGE and (2 yrs)

LJoyC@... wrote:

> From: LJoyC@...

>

> In a message dated 6/10/99 2:55:34 AM Eastern Daylight Time,

> bryanorjenny@... writes:

>

> << Just wanted to hear

> from those of you whose CHARGEr's do have other younger siblings. Did you

> worry?

> >>

>

> ,

>

> Did I worry when I was pregnant w/ Zachary, 2 years later? I was such a pest

> trying to make sure he didn't have Charge I think the Drs were more relieved

> than I was when he was born normal! Back then I didn't know any other

> Chargers well and certainly none that had sibs w/ Charge so it was easier not

> to panic. Remember, the stats have not changed--the reoccurrence rates are

> still very low--less than a 5% chance. The odds are definitely in your favor

> if you want more kids. I had both kids at the same hospital so the NICU doc

> remembered me and Destiny well. She was so happy Zachary was normal that she

> took care if him personally while we were in the hospital together. She

> quickly pronounced him healthy and sent us home w/ a smile. Here's another

> thought--your risk for a Charge child was just as high (5%) when your older

> child was born and he's fine. If you decide to have more try to remember that.

>

> I know it is all so overwhelming now. It will get easier. It won't be this

> confusing forever. I think Destiny was about 's age when I came across

> my " What to Expect the First Year " that I had bought before she was born. I

> was so mad at everything I threw it on the floor (along w/ everything else I

> could find) and almost tore it to shreds. Common sense (AKA my husband)

> stopped me and said we could use it for our next child who would be fine.

> Then, and now, Destiny had her own schedule and way of doing things. It took

> a while for us to adapt, but as time went on we did. And you know, I'm glad I

> kept that book for when Zachary came along 2 years later.

>

> Hang in there, . Back then we said we were in the trenches, like in war.

> It's hard to see beyond the next minute, or day, but one day, when you are

> not looking, you will climb out and the path ahead will be easier. Just wait.

> You will make it, then look back and wonder how you ever did it.

>

> Take care of yourself, too!

> (Destiny 6 CHARgE, Zachary 4)

> NYC

>

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

> How has ONElist changed your life?

> Share your story with us at http://www.onelist.com

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

> 4th International CHARGE Syndrome Conference, Houston, Texas, July

> 23-25, 1999.

> For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

[Guest guest]

and others,

It's so funny you guys mentioning the " What to expect in the first year "

book. I was in Walmart one day with Kennedy and my mom and I saw that book

on the shelf and literally, out loud, with other people around started

shaking my head and said " HA! " {yeah right! kind of ha}. I think the people

around thought I was crazy. It must've been an eventful week back then...

They should have a " How to deal with doctors and other medical professionals

when you are totally stressed out and can't even think in the first year "

book.

Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir's homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>--

>Thank you!

>I will probably be a pest too. I was with Josh and I didn't even have a

clue of the things that can really go wrong.

>Now that I know more, I probably will bug my doctor more. :-) It's

probably early to start worrying about all of this

>as I'm not planning to have another child for a few more years but I just

had to ask and get it off my mind. I liked

>your story about " What to Expect the First Year " I lived by that thing

with but I havn't even looked at it with

>Josh. I wish they had a " What to Expect with a CHARGEr " . I guess that's

you guys. <grin>