Re: (Fwd) twice in a family? feeding

[Guest guest]

In a message dated 99-03-21 18:53:04 EST, you write:

<< My first question is regarding siblings. I am expecting again in July and

so

far everything thing looks normal. My husband and I have been told that the

chances of having another child with CHARGE are only 1-2%. However, I know

of

a couple in Minnesota that have 2 girls with CHARGE and I was wonderin >>

Jodie,

I was told the same thing about recurrence > I had a son, , that die at 6

months of age with CHARGE on March 21, 1996. My husband did not want another

because of fear, then he agreed to have another in a year, then 3 months later

I talked him into it, so on March 22, 1998(That's today, it's Jillian's

Birthday!!!!!). My beautiful little baby girl Jillian was born. With cHaRgE

!!!! She's quite mild compared to . had ALL the lettersd in CHARGE

whereas Jillian only has the ones I capitolize in cHaRgE......Her heart needs

no surgeries though, just a few wires crossed (arteries traveling in the wrong

directions)Ears....chronic infections, but hypersensitive hearing. She'll spin

around in her crib if you try to sneak in her room and a floor board creeks.

She has slight feeding issues, can't quite get anything chunky down, but has

always been orally fed. Pretty severe hypotonia, she can't crawl, walk,

etc.....Overall, she's a mommy's dream....You know how mommys always wish

their babies won't grow up because they grow so fast!!??? Well, Jillian will

just be a baby longer, what every mom wishes and I guess in a weird way, I got

that mommy's wish!!!

I also want another, but 2 out of 3 is too scary. I have a healthy 3 1/2 year

old, . He's my oldest. I had alll 3 in 2yr 7 mo. BAM BAM BAM.....

would have been 2 1/2....

Honestly thought, the odds ARE in your favor!!!! It's pretty rare to have

more than one but it obviously happens.... They really should NOT put a

percentage on the recurrance rate until they identify the gene that causes it.

Because some of us have as high of a chance as 25% but we don't know who we

are until it happens. Hey, guess what, I'm one of them!! :-) :-) :-)

Foley,

Mom to 3 1/2, (died w/CHARGE) and Jillian 1 TODAY!!!!! cHaRgE

[Guest guest]

,

Happy Birthday to Jillian! I love that name!! Too bad we are having a boy!

My daughter, Madison, also eats orally and gets supplemented at night with

Pediasure. She too has problems with chunks. It has slowly gotten better

with time. She will eat bananas and spaghetti-o's and soft foods like that

now. She also loves shredded cheese! But at 12 mos. she would only eat stage

2 baby foods. Regarding ear infections,- what a drag!!! Madison gets them

all the time too! Lately, she has been on a maintenance medicine, Gantrisin,

to keep from getting them. It seems to be working but she has fluid in her

ears all the time! If the fluid does go away in another 3 weeks when she sees

the ENT, then she may possibly get tubes. I am worried about her speech

development. She will say mama and dada, but overall is very quiet. Her

hearing appears to be normal, so I don't want to jeopardize that, or her

speech due to fluid!

I am sorry to hear about your son . I can not even begin to imagine

going through something like that. You must be a very strong person! My due

date is July 2 and I can't wait for this baby to get here. I just will

continue to hope and pray that he is healthy. What would it be like to go

home from the hospital with a newborn?! Madison was 1 month old and only home

for 3 weeks before admitted again!

Thanks for all the info!

Jodie-mom of Madison 18 mos. w/ CHaRgE

[Guest guest]

In a message dated 99-03-22 09:09:52 EST, you write:

<< I am worried about her speech

development. She will say mama and dada, but overall is very quiet. Her

hearing appears to be normal, so I don't want to jeopardize that, or her

speech due to fluid!

>>

Jodie,

I was worried about Jillian's speech too. At birth, she had no voice and was

very hoarse for the first 7-8 months of life, I was worried she would never

talk at all. At 5 months, she got tubes put in ands it took her about 2 months

to begin to even make noises. She was also put on Zantac for reflux and I

think that helped the hoarseness. Now she says dada and has said ki-ka (for

kitty cat) but she won't say mama or baba(for bottle). She understands more

than I think, like today, I was holding her and I said, " Do you want to go in

your swing? " She turned and looked right at her swing. That even shocked me.If

you say " dance " , " high five " , " patty cake " , " big girl " ...she does the motion

for all those.....So mentally she is doing great. It's the physical stuff we

are working on so hard.BTW..she even laughs out loud now which she never did

for 7-8 months.......Does Madison understand demands? If so, I think in her

own time, speech will come. Our CHARGErs have a time clock all their own and

refuse to do what WE want them to do until they are good and ready. Stubborn

little rascals, I think.

Foely,

Mom to 3 1/2, (CHARGEr in heaven) and Jillian 1 w/cHaRgE

[Guest guest]

,

Yes, madison does respond to verbal commands. She will patty -cake, do so-

big, play peek-a-boo. Also, when I say where's the doggy or baby or daddy (

using the appropriate words) she does look right at what I am asking her

about. I definitely agree that they are on their own time schedule!! Madison

has been having problems with fluid in her ears too, along with ear

infections. She has had fluid in them since lasst November!! We are seeing

the ENT doc again in April and hopefully the fluid will have cleared up, if

not maybe tubes will be next.

She also knows what I mean when I ask if she wants her bottle(baba). Usually

she shakes her head no! ( which we never taught her how to do!) Of course,

she will not shake her head yes, or maybe she thinks she is sometimes when she

shaking it no. Although most questions get answered with the head shake of

no. Probably pretty typical of most toddlers!!!

Talk with you soon!

Jodie mom of Madison w/ CHaRgE (no hearing loss, just a floppy ear)...as far

as we can tell

from: Cutch88@...

[Guest guest]

In a message dated 99-03-22 14:58:46 EST, you write:

<< Madison

has been having problems with fluid in her ears too, along with ear

infections. She has had fluid in them since lasst November!! >>

Jodie,

Jillian has a floppy ear too, but as far as we know no hearing loss. Even with

tubes, she still has constant fluid and ear infections. It's weird, she does

not drool like most babies when teething or just as a normal drooling baby

thing, so I guess all of it goes into her ears in stead of out of the mouth.

The ear that keeps fluid almost 100% of the time is the small non-floppy

ear.....

Foley

[Guest guest]

,

Wow! That's weird because Madison has never drooled before either!! She has

been extremely late in getting her teeth. She got her first tooth at 12 mos,

another at 13 mos, and then no teeth until this past month. Now all of a

sudden she is getting at least 5 teeth, including molars! But no drooling!

I never thought that maybe it was all going to her ears. I bet you're right!

Thanks!

Jodie mom of Madison w/ CHaRgE 18 mos.

[Guest guest]

In a message dated 99-03-23 08:15:28 EST, you write:

<< MacKenzie has fluid/infections too, in her ear that is more " normal "

looking, strange you would have thought it would be the other way

around. Can't wait to meet you and Jillian in Texas. >>

Jeanne,

When Jillian was born, the doc were looking at her ears and making assumptions

and said when she had her hearing test it would probably show more hearing

loss in the floppy ear and I told them I thought they were wrong, that I

thought the loss would be in the other ear. They said I was wrong and strongly

disagreed. She had the test and mommy !!!was right again. I don't quite know

what triggered my mind to think that, I just did. The " hole " going into the

floppy ear is twice the size of the " normal ear, so I guess that was my

instinct.

Foley

[Guest guest]

Korey,

thanks for the info on the Playtex cups. I've seen them, but have bought

every kind except for that one. Maybe I''ll try that one too.

I love this e-mail sight and wish I had known about it earlier. I am sure

that all of us parents will get more useful info from this than we could ever

dream about getting from a doctor!!!

Thanks again!

Jodie

mom of Madison 18 mos. w/CHaRgE

[Guest guest]

Jodie,

Hi and welcome to the list. I hope that you find all the answers your

looking for. The list has helped so many of us in so many ways, that I'm

sure you'll be happy here.

About the sippy cups. My daughter Kayla(we just call her KK) was the

same way. With the original sippy cups with no suction needed. She

wouldn't close her mouth either. So the juice ended up everywhere. So

my cousin gave me the Playtex kind to try. Said they worked wonders for

her daughter. I tryed it and it's what worked for KK. It still took

that suction motion, but it was from a cup. For KK I think it was, she

would have the cup in her hands and the juice wouldn't come out. So she

tried and tried to suck, but you need good sucking power at first. Which

she didn't have. So we ended up waiting a few more months before we

tryed seriously again. But after that, she saw that you needed to

suck(we demonstrated for her) and she got it after that. It was so easy

to take the bottle away from her and give her the playtex cup. Now we

just need to teach her how to put an open up down and look at the same

time she's doing it. She tends to look elsewhere and put the cup down,

not knowing what's she's doing. MESSY!

I hope this helps some. And Welcome again.

Korey mom to KK

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[Guest guest]

Cutch88@... wrote:

>I am sure that all of us parents will get more useful info from this >than we

could ever dream about getting from a doctor!!!

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Jodie,

You said it girl! This list has been my LIFE line for the past year. I

think life would have been much harder to deal with without it. I hope

you love it here as much as we have.

Mom to Kennedy 13 mos old CHARGEr, 9, 7 and wife to Graeme

New Brunswick, Canada

Graeme & Weir

gweir@...

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

*ICQ* UIN:1426476

*AOL Buddy* - Kawfolks