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Hey , nice to see you again. Tell us all about how you are

doing?

Warmly,

Beth in Florida

> Hello fellow post ops. After April 15, I couldn't figure out how to

subscribe to this new list, so I've missed hearing how everyone

is doing. Just read a couple of " digests " and the positiveness of

posts are wonderful. Being in Memphis and being out of the

loop, I'm really wondering how Dr. R is doing and if he's back at

Durham Regional saving lives again. I surely hope things have

worked out in that area. Will someone either post or email me

privately to bring me up to date. I'd really appreciate it.Wish I

could be there for the monthly meetings. One of these days, I'm

going make one of these meetings - maybe the annual picnic.

> M

> Memphis

> MGB 10/21/99

>

>

>

>

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Guest guest

,

Welcome back!! How'ya doin' now?

I hope Dr. R. is also back saving lives.... what a great way to put it, .

Hugs from Indiana,

Trudy

nice to be back

Hello fellow post ops. After April 15, I couldn't figure out how to subscribe

to this new list, so I've missed hearing how everyone is doing. Just read a

couple of " digests " and the positiveness of posts are wonderful. Being in

Memphis and being out of the loop, I'm really wondering how Dr. R is doing and

if he's back at Durham Regional saving lives again. I surely hope things have

worked out in that area. Will someone either post or email me privately to bring

me up to date. I'd really appreciate it.Wish I could be there for the monthly

meetings. One of these days, I'm going make one of these meetings - maybe the

annual picnic.

M

Memphis

MGB 10/21/99

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  • 8 months later...

Beck, Kendra, Debbie, Marci and all:

Hi everyone!!

It is nice to be back and reading about our plagio babies. We are

all doing great here, busy, just like everyone else in this group. I

have several " causes/passions " like this one that I like to stay

involved in (twins club, a preemies/NICU support group, my church,

PTO, our Young Republician's Club) and it gets overwhelming. I have

found that I need to take a break from one or two things so that I

stay fresh and find the time to actually do the things I committ to!!

The kids are great... is 6, in kindergarden and just lost her

first tooth. Kayle is 3 1/2, FINALLY potty trained and loving

preschool two mornings a week. Jacskon and are 2 1/2,

growing perfectly (they were 29 week preemies) and have actually

tested as ready for preschool in the fall. I am not sure if they are

self disciplined enough to listen for 2 1/2 hours, but their Early

Intervention team seems to think so. We'll see.

We still do speach therapy through EI - mostly trying to clear up the

twin babble. The EI staff has been so great to us.

Again, the moms and dads here should be proud of the sound suggetions

and advice given to new parents. So many resources are not known,

and we all clearly remember how confusing and emotionally tring it

was at the beginning of our journey with plagio/brachio/cranio.

I may not post as often as I want to because the advice is so clearly

and QUICKLY given by others. It really is awesome.

It is so nice to hear of everyone's successes. Even the vents are

great to read because we realize we are not alone in the battle for

our children!!

I will never regreat seaking out the best treatment possible for

...and being strong enough to get through all of it, from

decision making, to casting, to actually putting the thing on his

head, to smiling through the stares, to the thrill of graduation. We

moms are a tough group, and having this group to lean on and learn

from makes it all so much easier.

I have found a locaiton that does the Starband here in Cleveland, so

now we actually have three options for treatment: a locally made

helmet from the Cleveland Clinic, the DOC band from CT and the

Starband from Orthhodic ____ (I forget). I called the Starband place

and they have done four babies in the last year. They sound ok, but

a bit unexperienced yet.

Love ya all, sorry so long (one of my greatest flaws!)

Have a great Valentines Day!!!

Sue Luck

Cleveland

mom to , Kayle, (DOC band grad) and

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Sue:

Wow, you sure are a busy woman! No wonder you haven't been around

much. We're happy to have you back :). I remember you helping me

out a lot last year when Abby was having some troubles with her 1st

band, then on to our happier times later.

You're probably quite happy to have at least one of your 4 kids in

school.

Be sure you keep in touch.

BTW, the " STARband place " is Orthomerica :)

Debbie Abby's mom DOCGrad

MI

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Hi Sue!

Its so great to hear from you again! You sure are keeping yourself

busy. I always enjoyed reading your posts because our kids are so

close in age. (I also have a kindergartener, a 3 and 1/2 yr. old and

1 and 1/2 yr. old twins) I'm really happy to hear that your twins

are doing so well after being born so early. Kids are truly

amazing! Keep up the great work by being such an advocate for many

parents through all the groups that you a member of. Be sure to drop

in time from time to let us know how you all are doing.

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Beck, Kendra, Debbie, Marci and all:

> Hi everyone!!

> It is nice to be back and reading about our plagio babies. We are

> all doing great here, busy, just like everyone else in this group.

I

> have several " causes/passions " like this one that I like to stay

> involved in (twins club, a preemies/NICU support group, my church,

> PTO, our Young Republician's Club) and it gets overwhelming. I

have

> found that I need to take a break from one or two things so that I

> stay fresh and find the time to actually do the things I committ

to!!

>

> The kids are great... is 6, in kindergarden and just lost her

> first tooth. Kayle is 3 1/2, FINALLY potty trained and loving

> preschool two mornings a week. Jacskon and are 2 1/2,

> growing perfectly (they were 29 week preemies) and have actually

> tested as ready for preschool in the fall. I am not sure if they

are

> self disciplined enough to listen for 2 1/2 hours, but their Early

> Intervention team seems to think so. We'll see.

>

> We still do speach therapy through EI - mostly trying to clear up

the

> twin babble. The EI staff has been so great to us.

>

> Again, the moms and dads here should be proud of the sound

suggetions

> and advice given to new parents. So many resources are not known,

> and we all clearly remember how confusing and emotionally tring it

> was at the beginning of our journey with plagio/brachio/cranio.

>

> I may not post as often as I want to because the advice is so

clearly

> and QUICKLY given by others. It really is awesome.

>

> It is so nice to hear of everyone's successes. Even the vents are

> great to read because we realize we are not alone in the battle for

> our children!!

>

> I will never regreat seaking out the best treatment possible for

> ...and being strong enough to get through all of it, from

> decision making, to casting, to actually putting the thing on his

> head, to smiling through the stares, to the thrill of graduation.

We

> moms are a tough group, and having this group to lean on and learn

> from makes it all so much easier.

>

> I have found a locaiton that does the Starband here in Cleveland,

so

> now we actually have three options for treatment: a locally made

> helmet from the Cleveland Clinic, the DOC band from CT and the

> Starband from Orthhodic ____ (I forget). I called the Starband

place

> and they have done four babies in the last year. They sound ok,

but

> a bit unexperienced yet.

>

> Love ya all, sorry so long (one of my greatest flaws!)

> Have a great Valentines Day!!!

> Sue Luck

> Cleveland

> mom to , Kayle, (DOC band grad) and

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  • 1 year later...
Guest guest

Hi

Welcome back!!I smiled through your post!!It was so nice to read that you have

become so independent.It is a great feeling isn't it?I didnot start flying until

6 yrs after my implant

and I have taken several since.Just a month ago I flew solo to and from

Dallas.That is another research study that you should check into.It is more

involved than the one at AZ.and the people are very nice just like Tony and Dr

Dormann.

Love Dora

nice to be back

Hi everyone!

It's good to be back and congratulations to whomever had good news

while I was gone.

I flew to Arizona last Thursday to be tested with my 3G in a

zillion different ways by Dorman and Tony Spahr at Arizona State

University. They are the nicest people and were so sweet to answer all

of my questions. I would do it all again in a second and they might

actually ask me to!

I came home on Saturday and then flew off to Florida on Monday rto

visit my parents and spend some time with my Dad who had a brain injury

at the end of February. I'm so happy to say that he is doing extremely

well.

Now that I am back occupying the concavity that is my couch, I am

so awed by what I did! Never in a million years could I have booked my

own flights, make reservations for airport parking, strike up casual

cnversation with people I have never met, go out to dinner in

restaurants all by myself.... talk about empowerment!! And when I wasn't

busy making conversation or being tested, I had my CD player plastered

on my head listening to music I haven't been able to enjoy in so long. I

was able to understand the movies on the airplanes but at the same time

I was disappointed that the movies were not captioned. I have already

contacted Amercia West and Jet Blue to let them know that they are

leaving us out! I'll let you all know if and how they respond.

These days I find myself doing things I have always wanted to do.

Small things to some but meaningful to me. Like taking a Yiddish class,

going out to a restaurant by myself, even upgrading one of my flights to

first class because, hey, why the heck not! LOLOLOL!

Nuked 9/28/00

Hooked 10/26/00

I SUPPORT OUR TROOPS!

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  • 4 years later...

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