Re: welcome Rose

October 25, 2000

Hello Holly, I am so overwhelmed by all that I have just read in your email

letter! You've actually met my neice, and seen my Great-Neice, Rose!

It's just more than I can beleive! I've called my parents and my sisters and

brothers to tell them. Please, know we are so happy over all this and Rose

will always be loved and cared for. We are all planning ways to care from

afar or visit and care when the time will be okay for and Dan. Thanks

again! God Bless you and God Bless your Cody and family.

HOLLY JOHNSON wrote:

> Hi Everyone

> Just by fate last Fri Oct 20th, we were at UofM hosp in Ann Arbor for an

> ENT check up for our son Cody & the nurse wanted to share our name with

> the parents of a new CHARGE baby in NICU-- of course I offered to meet

> with them & had the honor of meeting Rose's mom that day-Rose's

> dad was with her in the NICU unit- I was able to welcome them into our

> " family " and congratulate them on the birth of their beautiful

> daughter. I gave a brochure & encouraged her to contact our

> foundation, especially for the binder w/all the medical information (I

> wish this would have been around for me 6 years ago) & of course I

> shared our story & introduced our son Cody ( who was actually behaving,

> considering we were in the Dr's Exam room & he hates ear & nose

> exams).Anyway- welcome to Rose & her family-- I hope I was able to offer

> some support & comfort during these early days, which I know can be so

> hard some times.I hope to meet with & her family again, I

> understand her parents live in Bay City & I live in Saginaw & if Gram &

> Gramp(or any family member) happen to read this-- please contact me & we

> can get together.

> Congrat's again-

> Holly- mom of Cody-6 year CHARGEr & wife of Vic

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

October 26, 2000

Hi Cheryl, Yes kids are amazing, those with " problems " and those without

" problems " . Thanks for the information and thanks for allowing yourselves to be

" shared " with and her family. God Bless,

Cheryl Swenson wrote:

> -

> We received a message last night on our answering machine from one of the

audiologists at the Univ of Mich asking if we would be willing to talk with the

mom of a new baby with CHARGE. (our 5-year-old with CHARGE) and I were

at the Univ of Mich yesterday and would have been happy to stop by to welcome

Rose and her family had we known. We have now given Bruce (audiologist)

permission to give Rose's family our phone number and we look forward to talking

with them and meeting them to share what we have learned on the journey. We

remember those early, very scary days. had open heart surgery at 3

weeks of age at the Univ of Mich (UM). The UM is a wonderful place and they are

in the best hands. We have all sorts of information for Rose's family. Most

importantly, remember that these kids will amaze you with all that they CAN DO

and their special senses of humor and it does get better with time-REALLY.

>

> Cheryl, , (7), (5, CHaRGE)

> MI

>

> >>> bearchil@... 10/23/00 10:27PM >>>

> Dear ,

> Thank you so much for your message. I WILL order the Charge Manual for

> Rose's parents, Grandparents, Great-Grandparents, Great Uncles and

> Aunts, Aunts and Uncles and her parents cousins as well.

>

> Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately,

> Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to

> assist. I have printed as much information as I can. I read it, then I

> send it to those of us that live in Texas. I would love to be with Rose

> and her parents. My husband is pushing me in that direction. I just

> don't want to be a burden to them.

>

> Today, we heard from Rose's Grandmother (my sister). When Rose was

> born, and a week thereafter, the " diagnosis " was that physical problems

> were on the left side of her little body. She had surgery last Friday

> to unblock her breathing passages. Her breathing tubes have been

> removed, however she is unable to breath and drink from a bottle at the

> same time. Rose is still in ICU. Her feeding tubes will remain intact.

> She HAS gained 6 ounces!

>

> Rose, was born with an " elf-like " ear on her left side and a closed eye

> on her left side. Today her Grandma told her Great-Grandma, after a

> hearing test (at three-days old), Rose will probably suffer from hearing

> loss in her right ear too. My sister (the Grandmother) also stated that

> there appears to be a problem with the right eye also. According to

> her, when Rose cries, no tears come and it's horrible! I guess I can

> give her my tears. The doctors have now decided some of this is due to

> palsy on the right side of her face. They will do more tests tomorrow.

>

> That's my update at this time. Thanks for listening and caring. I'll

> keep reading and sharing what yawl offer.

>

> Love,

> Great-Aunt of Rose (10 days old)

>

> Graeme & Weir wrote:

>

> > ,Welcome to CHARGEland, and congratulations on your new baby

> > niece. It's so great you're here already - that's a great way to

> > help out the family. You could relay their questions to us and we

> > will try and help as much as possible. My sister did this for me when

> > my little Kennedy was still in the hospital and it was a big help. My

> > outside lifeline.If you live close enough, you could always offer to

> > go and sit with your niece for awhile so that mom & dad could get out

> > for awhile. This would've been great (we spent almost 4 months in a

> > hospital 6 hrs away from home ) Another great help would be to get

> > mom & dad a CHARGE manual from the foundation (www.chargesyndrome.org)

> > it's 20 dollars American and worth every penny. It's the most up to

> > date-covering all areas of CHARGE book of it's kind. It will be a big

> > help to mom & dad in learning all the stuff they will need to know.

> > My only other advice would be not to be timid about learning to care

> > for your niece - it may be things you never dreamed you'd be doing

> > (tube feeds, trach care, etc). But, it really helps when you have

> > family members who know how to do everything and you feel comfortable

> > with so they can give you a break. Your little niece is in our

> > thoughts! Please keep us posted when you can and let us know how she

> > is doing.

> > Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme

> > New Brunswick, Canada

> > Visit the " Weir homepage " at:

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

> > ICQ #1426476

> >

> > Re: Very frustrated

> > Hello,

> >

> > God Bless you! I am the Great-aunt of a Charger born on

> > Friday, October 13,

> > 2000. My little neice is now 6 days old and has had one

> > surgery thus far.

> >

> > I know little or nothing about this " thing " . I just will

> > pray for you, your

> > baby and everyone else. If you have any ideas as to how

> > relatives can assist

> > in a parent of a Charger; please let me know! I feel

> > helpless.

> >

> > Love,

> >

> > deepta_69@... wrote:

> >

> > > Hi,

> > > I am going to vent my frustration here. I just spent 1/2

> > hr with

> > > Amita trying to get her to taste/feed / anything. She

> > clenches her

> > > teeth and shakes her head and will do anyhting other than

> > open her

> > > mouth for taste. I know many of you are in the same boat

> > as me so you

> > > will understand. I do know all the reasons for persisting

> > and

> > > staying calm but it got to me today. I do the nuk brush

> > and all and

> > > she'll cooperate to a certain extent only. I can't talk to

> > my

> > > friends, they sympathise but do not understand the full

> > extent of

> > > what we go thru'. Sometimes I wish that magically she will

> > start

> > > eating. The problem is also that everyone (relatives,

> > parents, in-

> > > laws)keeps asking me .. Is she eating thru' the mouth now?

> > Do you

> > > give her taste? Some water? I think that all expect that

> > once you

> > > start making progress it will be very quick and the button

> > will be

> > > gone? So the '20 questions' keeps happening every week.

> > Oh, don't get

> > > me wrong here.. I do understand that all of them do this

> > out of

> > > concern for us and her, but explaing week after week that

> > no, she

> > > isn't, there is aversion, sensory isuues etc is putting so

> > much

> > > pressure on me, sometimes I just sit and cry. On top of

> > that is worry

> > > about all the other stuff... hearing, life etc. I guess I

> > am feeling

> > > overwhelmed. Any ways, it is time for her breakfast now..

> > got to go..

> > > thanks for listening..

> > > Deepta

> > >

> > > " 5th CHARGE Syndrome International Conference,

> > Indianapolis, Indiana, July

> > > 20-22, 2001. Information will be available first in CHARGE

> > Accounts, the

> > > CHARGE Syndrome Foundation's newsletter. "

> > >

> > > For information about the CHARGE Syndrome

> > > Foundation or to become a member (and get the newsletter)

> > > please contact marion@... or visit

> > > the CHARGE Syndrome Foundation web page

> > > at http://www.chargesyndrome.org

> >

> > " 5th CHARGE Syndrome International Conference, Indianapolis,

> > Indiana, July

> > 20-22, 2001. Information will be available first in CHARGE

> > Accounts, the

> > CHARGE Syndrome Foundation's newsletter. "

> >

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter)

> > please contact marion@... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> >

> > eGroups Sponsor

>

> >

> > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana,

> > July

> > 20-22, 2001. Information will be available first in CHARGE Accounts,

> > the