Re: Cameron's change of blog address...Elvia

[Guest guest]

Hello Elvia,

How is your baby doing now? Welcome to the list.

Re: Cameron's change of blog address...

Hello. I'm a mother of a 7mo old baby w/CHARGE. I just wanted to know how it

is with some of the parents.

ina Multhaupt wrote: ,

What a beautiful site for your family! I was very

moved by your writing and inspired at the same time.

ina, mom to Luca (3) & Vinny (19 months w/ cHARgE)

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[Guest guest]

She is on a Gtube, has a trach, facial paralysis, hearing loss (not sure how

much), cardiac stenosis,etc. She was born in May, hospitalized right after

birth for about 3mo., came home one day and had to be admitted the next day for

about a wk. She keeps getting this trach infection, I don't know what I'm

doing. I try everything for it not to be dirty, I clean around many times, I

change her trach every week, once, and it seems to always get an infection. I'm

not sure what to do at times.

Keedy wrote: Hello Elvia,

How is your baby doing now? Welcome to the list.

Re: Cameron's change of blog address...

Hello. I'm a mother of a 7mo old baby w/CHARGE. I just wanted to know how it is

with some of the parents.

ina Multhaupt wrote: ,

What a beautiful site for your family! I was very

moved by your writing and inspired at the same time.

ina, mom to Luca (3) & Vinny (19 months w/ cHARgE)

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[Guest guest]

think they just get them sometimes dont no y welcoem

>

> She is on a Gtube, has a trach, facial paralysis, hearing loss (not sure

> how much), cardiac stenosis,etc. She was born in May, hospitalized right

> after birth for about 3mo., came home one day and had to be admitted the

> next day for about a wk. She keeps getting this trach infection, I don't

> know what I'm doing. I try everything for it not to be dirty, I clean around

> many times, I change her trach every week, once, and it seems to always get

> an infection. I'm not sure what to do at times.

>

> Keedy <wkeedy@... <wkeedy%40earthlink.net>> wrote: Hello

> Elvia,

>

> How is your baby doing now? Welcome to the list.

>

>

> Re: Cameron's change of blog address...

>

> Hello. I'm a mother of a 7mo old baby w/CHARGE. I just wanted to know how

> it is with some of the parents.

>

> ina Multhaupt <paulinamulthaupt@...<paulinamulthaupt%40yahoo.com>>

> wrote: ,

>

> What a beautiful site for your family! I was very

> moved by your writing and inspired at the same time.

>

> ina, mom to Luca (3) & Vinny (19 months w/ cHARgE)

>

> Recent Activity

> a.. 2New Members

> Visit Your Group

> Yahoo! TV

> Play the Intern Game

>

> Win and work for

>

> the next Apprentice.

>

> Market Online

> Drive customers to

>

> your web site with

>

> Sponsored Search.

>

> Yahoo! Groups

> Start a group

>

> in 3 easy steps.

>

> Connect with others.

> .

>

>

[Guest guest]

Elvia-

Welcome to our CHARGE family! Sounds like you are feeling challenged by

your daughter's needs right now. With a long hospitalization, a trach, and

all those infections, you must be feeling weary and frustrated. Hang in

there. We can all promise you that things will get better!

My daughter is 9 yrs old. She did not having breathing problems, but did

have aorta surgery, G-tube, and several other surgeries and procedures over

the years (eyes, ears, hips, submucous cleft palate). I remember feeling so

overwhelmed and tired in the early years. I was so worried about her

future. Of course, I still have concerns, but it's not that huge impending

doom anymore.

Aubrie's hearing is improving with recent middle ear reconstruction. Her

vision is good in one eye and very minimal in the other so she gets along

pretty well. She walks, talks, runs, eats, dances, sings - everything other

kids do. She may be slower or more awkward - but she does it all and

delights in everything. She's in 3rd grade. She's been in regular classes

til this year. She's now at the school for the deaf because we wanted her

to learn sign. That was before the ear surgery. Next year, she'll probably

be back to a regular class. She's had a 1:1 aide since preschool to be sure

she's getting everything auditorally and visually, that she's keeping up

with the writing and other tasks, etc. Her G-tube was removed at about age

1.5 yrs after lots of intense feeding therapy. The process felt so slow at

the time - but in retrospect, it was quick in CHARGE time! She can now eat

anything and is obsessed with cooking and Food Network.

You've found a wonderful resource here. It's saved my sanity. I love that

I can get on and post any time day or night. I can vent whatever it is I

need to share -joys and sorrows - and someone will reply by the time I get

back to the computer. By asking questions here and learning from others'

experiences, I know I've made better decisions about Aubrie's medical care

and education. Knowing that there is a worldwide CHARGE family out there

rooting for me makes a lot of difference in my ability to cope and face the

challenges that come up.

Have you reviewed the CHARGE manual on the Foundation website?? Right now,

it may be overwhelming. But it will come in handy as you work with

professionals along the way. The next conference is in California in July.

That may be too soon for you to consider making the trip, depending on where

you live. But connecting with other CHARGE families in person is a hugely

profound experience. You'll want to take that opportunity as soon as you

can by arranging to meet with someone near you or attending a conference.

We're glad you're here and look forward to knowing more about you and your

daughter.

Michele W

mom to Aubrie 9 yrs CHaRgE and 15 yrs, wife to DJ, in IL

[Guest guest]

Hi Elvia,

Welcome to the list. After being here on the list for about a year now, your

daughter's story has such a ring of familiarity. There are many parents here

who but have dealt with these same issues--probably not be the exact same

combination, but lots of overlap.

My son Evan is almost 18 months old now. He does not have a trach or any

heart defects. But--among other things--he has a g-tube, facial palsy, hearing

loss (took a long time to get a sense that it was severe in one ear and severe

to profound in the other, and we still don't have a great baseline). He was in

the hospital for the first 4 months, and has been readmitted periodically 4

times since then (most of these were planned, post-surgery; one was a lung

infection that resulted in a week long stay in the PICU).

Several of us on the list keep webpages about our kids, so if you are

interested in " a day in the life... " type information you are more than welcome

to visit mine: www.babysites.com/sites/skeybunny There are links to other kid's

web pages too.

(mom to Evan, 17.5 months)

Elvia Huaracha wrote:

She is on a Gtube, has a trach, facial paralysis, hearing loss (not

sure how much), cardiac stenosis,etc. She was born in May, hospitalized right

after birth for about 3mo., came home one day and had to be admitted the next

day for about a wk. She keeps getting this trach infection, I don't know what

I'm doing. I try everything for it not to be dirty, I clean around many times, I

change her trach every week, once, and it seems to always get an infection. I'm

not sure what to do at times.

Keedy wrote: Hello Elvia,

How is your baby doing now? Welcome to the list.

Re: Cameron's change of blog address...

Hello. I'm a mother of a 7mo old baby w/CHARGE. I just wanted to know how it is

with some of the parents.

ina Multhaupt wrote: ,

What a beautiful site for your family! I was very

moved by your writing and inspired at the same time.

ina, mom to Luca (3) & Vinny (19 months w/ cHARgE)

Recent Activity

a.. 2New Members

Visit Your Group

Yahoo! TV

Play the Intern Game

Win and work for

the next Apprentice.

Market Online

Drive customers to

your web site with

Sponsored Search.

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Start a group

in 3 easy steps.

Connect with others.

..