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Re: Thank you!

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Hi Jodi!

You have joined the list of many that had complication-free surgeries.

I appreciate your candor and your response. This is such a good group and I

am so impressed with how soon you both returned to work! It seems so soon!

I am learning here, that complications are more of the exceptions than the

rule, or that complications are usually minor as opposed to major. Happy

holidays to you and all your loved ones! Ann

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Hi ,

Boy, you sure read me right! The more reassurance the better. I am

nervous and insecure about all of this. But everyone is wonderful and the

freedom from complications has been pretty amazing! Happy holidays and thank

you! Ann

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  • 1 year later...
  • 7 months later...
Guest guest

,

Hello from andria, VA!

Good luck with your further testing ... talk with your doc and request the

AMBRY GENETIC TESTING (done in CA) ... checks for up to 1,000 known CF

genes.

Katy Bean, a former member of my support group and member of this on-line

support group, now in HI, has 2 kids with CF. And, both kids sweat tested

negative for CF.

SOME KIDS DO HAVE CF AND SWEAT TEST NEGATIVE ... have the genetic testing

done by Ambry.

Type in Ambry Genetics on the Internet and read about the company/test, so

you're knowledgeable when you talk with your doc.

Keep us posted on your child!

Sincerely,

Jen Chastain

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  • 1 year later...
Guest guest

,

I think if you go under 'edit membership' you can change your profile

so that your name shows up as rather than just 'R'. Glad we were

able to make you feel better:-) Mission accomplished.

Sara

> Thanks for all the support and advice you guys have given me so far!

> It will be great to chat wih everyone throughout my (and everyone

> else's) operation and recovery. And also - do you know how to change

> the username thing? Mine shows up as just " R " for some reason and I

> want to change it.

>

> <3,

>

> Oh yes, my mom is a member too and signed me up on the June surgery

> calender! June 3!

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Guest guest

If you look at the top of the page..there is a title bar for the

support group. Right above that there is a little link " Edit

Membership. " Once there, there is an option to change username. The

username is what shows up when you post a message. let me know if this

does not work!

~~

> Thanks for all the support and advice you guys have given me so far!

> It will be great to chat wih everyone throughout my (and everyone

> else's) operation and recovery. And also - do you know how to change

> the username thing? Mine shows up as just " R " for some reason and I

> want to change it.

>

> <3,

>

> Oh yes, my mom is a member too and signed me up on the June surgery

> calender! June 3!

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Guest guest

Wow Sara...I think we posted that at the same time lol!

> > Thanks for all the support and advice you guys have given me so

far!

> > It will be great to chat wih everyone throughout my (and

everyone

> > else's) operation and recovery. And also - do you know how to

change

> > the username thing? Mine shows up as just " R " for some reason

and I

> > want to change it.

> >

> > <3,

> >

> > Oh yes, my mom is a member too and signed me up on the June

surgery

> > calender! June 3!

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Guest guest

, great minds think alike:-)

> > > Thanks for all the support and advice you guys have given me so

> far!

> > > It will be great to chat wih everyone throughout my (and

> everyone

> > > else's) operation and recovery. And also - do you know how to

> change

> > > the username thing? Mine shows up as just " R " for some reason

> and I

> > > want to change it.

> > >

> > > <3,

> > >

> > > Oh yes, my mom is a member too and signed me up on the June

> surgery

> > > calender! June 3!

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  • 1 month later...
  • 1 year later...
Guest guest

Glad I could help, .

I think you will be very happy with Dr. Van Bosse and it is

wonderful that he accepts your insurance. The whole process is

trying enough at times without adding money worries into the mix.

My heart breaks for families that have to pay out of pocket, but

have no choice because they are doing the best thing for their child.

As for the consultation, I can't say for sure whether you will have

to pay out of pocket, but I would imagine not. If there is any

charge at all, which there may not be, he should be able to bill

your insurance company. Our first visit with Dr. Van Bosse was an

actual cast change ( had his first casts applied by a local

ortopaedist 12 hours after he was born. It was unnecessary and I

would not recommend it), so we never had a consultation, per se.

I wish you the best of luck and please feel free to contact me.

Anne

>

> Anne,

>

> You are truly a lifesaver. I needed to get your email tonight!

>

> Knowing how pleased you are with Dr. Van Bosse has made a world of

> difference to me. I was so scared that because of my financial

> situation I would be left without the best care. I am going to

> schedule my consultation with him as soon as I get another

ultrasound.

>

> Did you have to pay out of pocket for your initial consultation?

>

> sounds like he is doing very well. I am so happy for you

and I

> hope I am as happy as you 4 months in!

>

> Thank you again,

>

>

>

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  • 4 weeks later...
Guest guest

I really enjoyed meeting you and your husband and didn't get a chance to see you

after

you were done with your consultation. Who did you meet and what did you think?

I hope

it went well and you feel a little more comfortable. I will email you off board

when I have a

chance and give you my information again. As I said the other day, don't

hesitate to

contact me if you need to/want to.

As for , Dr. VB said that we could begin to reduce the time in the DBB,

so we're no

longer 23/7. YAY! We're going to do 20/7 for a month and then 18/7 for another

month

and then VB will see him again. I'm actually a little nervous about it - so

afraid of a

relapse. I've been like the FAB gestapo with him and really only had him out of

the brace

when I would bathe him. He seems to be enjoying his new found freedom, though.

Enjoy the rest of your pregnancy. It's not long now...

-Anne

>

> Just a thank you to Anne!!!! You were so helpful at the consultation for Dr.

Van Bosse

(cannot find your email :( ). I could not have gotten through yesterday without

your help

and patience! Thank you!!!!!!!

>

>

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Guest guest

definitely send me your email again! pregnancy makes you do silly things!

Re: Thank You!

I really enjoyed meeting you and your husband and didn't get a chance to see

you after

you were done with your consultation. Who did you meet and what did you think?

I hope

it went well and you feel a little more comfortable. I will email you off

board when I have a

chance and give you my information again. As I said the other day, don't

hesitate to

contact me if you need to/want to.

As for , Dr. VB said that we could begin to reduce the time in the DBB,

so we're no

longer 23/7. YAY! We're going to do 20/7 for a month and then 18/7 for another

month

and then VB will see him again. I'm actually a little nervous about it - so

afraid of a

relapse. I've been like the FAB gestapo with him and really only had him out

of the brace

when I would bathe him. He seems to be enjoying his new found freedom, though.

Enjoy the rest of your pregnancy. It's not long now...

-Anne

>

> Just a thank you to Anne!!!! You were so helpful at the consultation for Dr.

Van Bosse

(cannot find your email :( ). I could not have gotten through yesterday

without your help

and patience! Thank you!!!!!!!

>

>

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  • 3 years later...

MB.... I'm late sending my atta-girl to you! These accomplishments feel so good and encourage the rest of us...

Hugs.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Thank you!

Thank you everyone for your congratulations and encouragement. This is one of the reasons I love this group!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

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