Kim,
The bladder augmentation and Malone procedures have allowed my daughter (now 14)
to be more independent with the bathroom since she had it done around age 5 when
she started school. She has a regular bowel routine where she uses a port in her
stomach to flush out her bowels every 2 or 3 days. The port was created with her
appendix, which the doctor removed and reused.
 
With the bladder augmentation she can cath herself through her navel. She uses
bags with catheters in them and can use them while we are on the road. Some of
the other kids on her wheelchair basketball team here in Charlotte also had this
procedure done.
 
The bladder augmentation does have risks. If they use bowel tissue to expand the
bladder (as my daughter had done) there is a greater risk of bladder cancer
starting around the college years. It is important to flush the bladder
regularly to prevent kidney/bladder stones from forming. We knew a family whose
child had severe complications several months after the surgery. It is important
to catheterize to drain the bladder as frequently as the doctor recommends. I
believe it is more frequent while the augmented bladder is healing.
 
My daughter now caths about every 4 hours. If her bladder gets too full she has
a hard time getting the catheter in. We have found ways to help by getting her
to lay flat on her back or going through her natural urethra in an emergency.
She has gotten as much as 800 CCs out of her augmented bladder. But 500 to 600
CC have required her to do the flat on the back method. She may feel like she
has to go even when she only gets 100 CCs out. This is more likely if she gets a
bladder infection.
 
Overall we are pleased with the way it has helped her be more independent.
Please feel free to e-mail my wife, Kim, at sbanc_2000@... for better
details. We will keep your daughter and you in our prayers.
 
God bless!



 
Michael H. Gates
Indian Trail, NC 28079

--- On Fri, 10/10/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] bladder augmentation
To: sbaofnc@yahoogroups.com
Date: Friday, October 10, 2008, 11:49 AM






has anyone had a bladder augmentation? my daughter is getting ready to
have surgery on friday the 17th.she is also having the malone antegrade
continence procedure and i dont know anything about it or if it works.


















[Non-text portions of this message have been removed]

Kim



I am an adult with SB so if you want to talk feel free to email me. I am 37
I walk with braces and crutches, have full bladder and bowel control. Would
love to encourage you. I am new to the NC area so I am not so much up on
docs in this area, so if you want someone to just bounce something off of
feel free to email me

Christine1970_2000@...



Christine



From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
kim casteel
Sent: Wednesday, October 08, 2008 4:23 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] hello



hi there my daughter is 3 and has spina bifida i was looking for people to
talk to about this disability.

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Use Google and type in bladder augmentation. There are lots of sights that
come up and give good descriptions, etc. Do the same for malone procedure.

Mari

--- On Fri, 10/10/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] bladder augmentation
To: sbaofnc@yahoogroups.com
Date: Friday, October 10, 2008, 11:49 AM






has anyone had a bladder augmentation? my daughter is getting ready to have
surgery on friday the 17th.she is also having the malone antegrade
continence procedure and i dont know anything about it or if it works.


















[Non-text portions of this message have been removed]


------------------------------------

Yahoo! Groups Links

Yes Kim. I have had a bladder augmentation. I really couldnt tell you though
what is done or what to expect. I was really young when i had it. Probably
Brittney's age.

--- On Fri, 10/10/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] bladder augmentation
To: sbaofnc@yahoogroups.com
Date: Friday, October 10, 2008, 11:49 AM






has anyone had a bladder augmentation? my daughter is getting ready to
have surgery on friday the 17th.she is also having the malone antegrade
continence procedure and i dont know anything about it or if it works.


















[Non-text portions of this message have been removed]

yeah ive had a couple of the doctors to get on my nerves like that too. i was
cathed when i was little but when i started middle school the doctor wanted to
see if i could void on my own...i have been doing that ever since. i dont cath
like i should but i dont think its necessary all the time. if you could send me
the numbers...that would be great. one question....do they see adults with sb? i
am 27. thanks!

--- On Fri, 10/10/08, Stormie Willingham <counselorwillingham@...> wrote:

From: Stormie Willingham <counselorwillingham@...>
Subject: RE: [SBAofNC] Doctors
To: sbaofnc@yahoogroups.com
Date: Friday, October 10, 2008, 12:17 PM






You just need to get your primary physician that treats whomever has SB to fax a
referral.  Then they will call you and make an appointment.  Their clinic is so
well organized and you are not there with a million other people and also the
urologist there does not treat you with a blanket that he treats ALL SB patients
with.  Duke tried to get me to cath my son "because at some point he will most
likely need it".  That's ridiculous.  My son has no medical reason to be cathed
and Dr. Southerland said the latest urodynamic shows he has some control of his
bladder sphincter and if I had just cathed him as Duke suggested the nerves that
now work may have never gotten stronger.  I can send you the number to the
clinic if you'd like. Duke tried to begin routine cathing two and a half years
ago.  My son has not been cathed, had any infections and no kidney or bladder
issues in almost three years.  If he needs to later be cathed he will learn to
get over
any fear he would have just as a kid who suddenly has to take insulin shots
learns to give themselves the shots and not be fearful.  Our children are not
idiots or helpless or unable to adjust!! 

--- On Fri, 10/10/08, Samantha Garrison <uncpembrokechick218 1981@yahoo. com>
wrote:
From: Samantha Garrison <uncpembrokechick218 1981@yahoo. com>
Subject: RE: [SBAofNC] Doctors
To: sbaofnc@yahoogroups .com
Date: Friday, October 10, 2008, 10:15 AM

I go to doctors at duke too. I always have. I have recently gotten to where i
dont like them either. Do I have to get a referral to get an appt with them?

--- On Fri, 10/10/08, Stormie Willingham <counselorwillingha m @yahoo.com>
wrote:

From: Stormie Willingham <counselorwillingha m @yahoo.com>

Subject: RE: [SBAofNC] Doctors

To: sbaofnc@yahoogroups .com

Date: Friday, October 10, 2008, 9:21 AM

Yes my son is seen exclusively at Chapel Hill. I had him at Duke but I DID

NOT like their clinic. The Spina Bifida Clinic at UNC is great and all of

the doctors are very good. We see Campion for ortho, Perry for neuro,

Alexander for Developmental and Southerland for Uro.

E-mail message checked by Spyware Doctor (5.5.1.322)

Database version: 5.10870e

http://www.pctools. com/en/spyware- doctor/

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]


















[Non-text portions of this message have been removed]

You just need to get your primary physician that treats whomever has SB to fax a
referral.  Then they will call you and make an appointment.  Their clinic is so
well organized and you are not there with a million other people and also the
urologist there does not treat you with a blanket that he treats ALL SB patients
with.  Duke tried to get me to cath my son "because at some point he will most
likely need it".  That's ridiculous.  My son has no medical reason to be cathed
and Dr. Southerland said the latest urodynamic shows he has some control of his
bladder sphincter and if I had just cathed him as Duke suggested the nerves that
now work may have never gotten stronger.  I can send you the number to the
clinic if you'd like. Duke tried to begin routine cathing two and a half years
ago.  My son has not been cathed, had any infections and no kidney or bladder
issues in almost three years.  If he needs to later be cathed he will learn to
get over
  any fear he would have just as a kid who suddenly has to take insulin shots
learns to give themselves the shots and not be fearful.  Our children are not
idiots or helpless or unable to adjust!! 

--- On Fri, 10/10/08, Samantha Garrison <uncpembrokechick2181981@...>
wrote:
From: Samantha Garrison <uncpembrokechick2181981@...>
Subject: RE: [SBAofNC] Doctors
To: sbaofnc@yahoogroups.com
Date: Friday, October 10, 2008, 10:15 AM











             I go to doctors at duke too. I always have. I have recently gotten
to where i dont like them either. Do I have to get a referral to get an appt
with them?



--- On Fri, 10/10/08, Stormie Willingham <counselorwillingham @yahoo.com> wrote:



From: Stormie Willingham <counselorwillingham @yahoo.com>

Subject: RE: [SBAofNC] Doctors

To: sbaofnc@yahoogroups .com

Date: Friday, October 10, 2008, 9:21 AM



Yes my son is seen exclusively at Chapel Hill. I had him at Duke but I DID

NOT like their clinic. The Spina Bifida Clinic at UNC is great and all of

the doctors are very good. We see Campion for ortho, Perry for neuro,

Alexander for Developmental and Southerland for Uro.



E-mail message checked by Spyware Doctor (5.5.1.322)

Database version: 5.10870e

http://www.pctools. com/en/spyware- doctor/



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]


























[Non-text portions of this message have been removed]

has anyone had a bladder augmentation? my daughter is getting ready to
have surgery on friday the 17th.she is also having the malone antegrade
continence procedure and i dont know anything about it or if it works.

I go to doctors at duke too. I always have. I have recently gotten to where i
dont like them either. Do I have to get a referral to get an appt with them?

--- On Fri, 10/10/08, Stormie Willingham <counselorwillingham@...> wrote:

From: Stormie Willingham <counselorwillingham@...>
Subject: RE: [SBAofNC] Doctors
To: sbaofnc@yahoogroups.com
Date: Friday, October 10, 2008, 9:21 AM






Yes my son is seen exclusively at Chapel Hill. I had him at Duke but I DID
NOT like their clinic. The Spina Bifida Clinic at UNC is great and all of
the doctors are very good. We see Campion for ortho, Perry for neuro,
Alexander for Developmental and Southerland for Uro.

E-mail message checked by Spyware Doctor (5.5.1.322)
Database version: 5.10870e
http://www.pctools. com/en/spyware- doctor/

[Non-text portions of this message have been removed]


















[Non-text portions of this message have been removed]

Yes my son is seen exclusively at Chapel Hill.  I had him at Duke but I DID
NOT like their clinic. The Spina Bifida Clinic at UNC is great and all of
the doctors are very good.  We see Campion for ortho, Perry for neuro,
Alexander for Developmental and Southerland for Uro.





E-mail message checked by Spyware Doctor (5.5.1.322)
Database version: 5.10870e
http://www.pctools.com/en/spyware-doctor/


[Non-text portions of this message have been removed]

I was wanting to know if there is anybody out there that goes to
doctors in Chapel Hill for their spina bifida issues? You can be a
child or adult. I am wanting to find another neurologist to go to.
Thanks!

Samantha Garrison

hi there my daughter is 3 and has spina bifida i was looking for people to talk
to about this disability.




[Non-text portions of this message have been removed]

Hi Al and Karen,
 
I live in Southern Pines, NC. I have 2 older brothers, 1 older sister and 1
younger half-sister. They are all non-disabled.

--- On Wed, 9/17/08, Alfred Lyons <AlfredLyons@...> wrote:

From: Alfred Lyons <AlfredLyons@...>
Subject: Re: [SBAofNC] My daughter
To: sbaofnc@yahoogroups.com
Date: Wednesday, September 17, 2008, 8:13 PM






Hi!

Our Ana with SB, is soon to be 10yo, and in 4th grade.
We have a nondisabled Daughter who is 5yo and in
Kindergarten. We're in Asheville.

Al and Karen in Asheville

--- mitchumsm <mitchumsm@yahoo. com> wrote:

> I have a 5 year old daughter with SB. This year we
> have had 2
> surgeries, 4 total, and 1 in her near future. I
> would like to talk to
> someone who has SB or has a son or daughter around
> my daughters age. i
> think it would benifit her to meet and talk to
> someone who has to
> overcome similar obstacles as herself. I would also
> enjoy talking to
> parents of a child with SB. Thank you
>
>
> ------------ --------- --------- ------
>
> Yahoo! Groups Links
>
>
>
>
>


















[Non-text portions of this message have been removed]

I live in Southern Pines, NC. It is near Pinehurst.
 
Samantha Garrison

--- On Wed, 9/17/08, cynthia teresa <cteresausa2003@...> wrote:

From: cynthia teresa <cteresausa2003@...>
Subject: Re: [SBAofNC] My daughter
To: sbaofnc@yahoogroups.com
Date: Wednesday, September 17, 2008, 5:06 PM






Hi there! I have a 5 yr. old with SB also. She is in Kindergarten now. I know
all the feelings of parents with SB kids. Where do you live? We are from Monroe,
NC (Union County)
 
Cynthia

--- On Wed, 9/17/08, mitchumsm <mitchumsm@yahoo. com> wrote:

From: mitchumsm <mitchumsm@yahoo. com>
Subject: [SBAofNC] My daughter
To: sbaofnc@yahoogroups .com
Date: Wednesday, September 17, 2008, 10:10 AM

I have a 5 year old daughter with SB. This year we have had 2
surgeries, 4 total, and 1 in her near future. I would like to talk to
someone who has SB or has a son or daughter around my daughters age. i
think it would benifit her to meet and talk to someone who has to
overcome similar obstacles as herself. I would also enjoy talking to
parents of a child with SB. Thank you

[Non-text portions of this message have been removed]


















[Non-text portions of this message have been removed]

Hi!

Our Ana with SB, is soon to be 10yo, and in 4th grade.
We have a nondisabled Daughter who is 5yo and in
Kindergarten. We're in Asheville.

Al and Karen in Asheville

--- mitchumsm <mitchumsm@...> wrote:

> I have a 5 year old daughter with SB. This year we
> have had 2
> surgeries, 4 total, and 1 in her near future. I
> would like to talk to
> someone who has SB or has a son or daughter around
> my daughters age. i
> think it would benifit her to meet and talk to
> someone who has to
> overcome similar obstacles as herself. I would also
> enjoy talking to
> parents of a child with SB. Thank you
>
>
> ------------------------------------
>
> Yahoo! Groups Links
>
>
>
>
>

Hi there! I have a 5 yr. old with SB also. She is in Kindergarten now. I know
all the feelings of parents with SB kids. Where do you live? We are from Monroe,
NC (Union County)
 
Cynthia

--- On Wed, 9/17/08, mitchumsm <mitchumsm@...> wrote:

From: mitchumsm <mitchumsm@...>
Subject: [SBAofNC] My daughter
To: sbaofnc@yahoogroups.com
Date: Wednesday, September 17, 2008, 10:10 AM






I have a 5 year old daughter with SB. This year we have had 2
surgeries, 4 total, and 1 in her near future. I would like to talk to
someone who has SB or has a son or daughter around my daughters age. i
think it would benifit her to meet and talk to someone who has to
overcome similar obstacles as herself. I would also enjoy talking to
parents of a child with SB. Thank you


















[Non-text portions of this message have been removed]

Hi there! I have a 5 yr. old with SB also. She is in Kindergarten now. I know
all the feelings of parents with SB kids. Where do you live? We are from Monroe,
NC (Union County)
 
Cynthia

--- On Wed, 9/17/08, mitchumsm <mitchumsm@...> wrote:

From: mitchumsm <mitchumsm@...>
Subject: [SBAofNC] My daughter
To: sbaofnc@yahoogroups.com
Date: Wednesday, September 17, 2008, 10:10 AM






I have a 5 year old daughter with SB. This year we have had 2
surgeries, 4 total, and 1 in her near future. I would like to talk to
someone who has SB or has a son or daughter around my daughters age. i
think it would benifit her to meet and talk to someone who has to
overcome similar obstacles as herself. I would also enjoy talking to
parents of a child with SB. Thank you


















[Non-text portions of this message have been removed]

hey Jamie! I have SB. I dont really remember what it was like for me at 3 years
old, but I can certainly still talk to you.

--- On Wed, 9/17/08, lost_star_vega <no_reply@yahoogroups.com> wrote:

From: lost_star_vega <no_reply@yahoogroups.com>
Subject: [SBAofNC] Re: My daughter
To: sbaofnc@yahoogroups.com
Date: Wednesday, September 17, 2008, 11:43 AM






Hey my name is Jamie. I have a 3 year old daughter with Spina Bifida.
Still learning about it myself but if you would like feel free to
contact me. I would be interested in talking with other parents as
well or others who have spina bifida. jawright@carolina. rr.com.

--- In sbaofnc@yahoogroups .com, "mitchumsm" <mitchumsm@. ..> wrote:
>
> I have a 5 year old daughter with SB. This year we have had 2
> surgeries, 4 total, and 1 in her near future. I would like to talk to
> someone who has SB or has a son or daughter around my daughters age. i
> think it would benifit her to meet and talk to someone who has to
> overcome similar obstacles as herself. I would also enjoy talking to
> parents of a child with SB. Thank you
>


















[Non-text portions of this message have been removed]

Hey my name is Jamie. I have a 3 year old daughter with Spina Bifida.
Still learning about it myself but if you would like feel free to
contact me. I would be interested in talking with other parents as
well or others who have spina bifida. jawright@....


--- In sbaofnc@yahoogroups.com, "mitchumsm" <mitchumsm@...> wrote:
>
> I have a 5 year old daughter with SB. This year we have had 2
> surgeries, 4 total, and 1 in her near future. I would like to talk to
> someone who has SB or has a son or daughter around my daughters age. i
> think it would benifit her to meet and talk to someone who has to
> overcome similar obstacles as herself. I would also enjoy talking to
> parents of a child with SB. Thank you
>

Hi! My name is Samantha. I am not 5 years old or am a parent with an SB child,
but I have SB myself. I know what your daughter is going through. It's hard
being a child with SB and growing up with it, but you tell her to just keep her
head high and live everyday one day at a time. I would love to be able to talk
to you or her if you need someone to talk to.

--- On Wed, 9/17/08, mitchumsm <mitchumsm@...> wrote:

From: mitchumsm <mitchumsm@...>
Subject: [SBAofNC] My daughter
To: sbaofnc@yahoogroups.com
Date: Wednesday, September 17, 2008, 10:10 AM






I have a 5 year old daughter with SB. This year we have had 2
surgeries, 4 total, and 1 in her near future. I would like to talk to
someone who has SB or has a son or daughter around my daughters age. i
think it would benifit her to meet and talk to someone who has to
overcome similar obstacles as herself. I would also enjoy talking to
parents of a child with SB. Thank you


















[Non-text portions of this message have been removed]

I have a 5 year old daughter with SB. This year we have had 2
surgeries, 4 total, and 1 in her near future. I would like to talk to
someone who has SB or has a son or daughter around my daughters age. i
think it would benifit her to meet and talk to someone who has to
overcome similar obstacles as herself. I would also enjoy talking to
parents of a child with SB. Thank you

Hello, everyone. I have a 1996 Dodge Grand Caravan I am interested in
selling. It has a fold-out ramp, lowered floor, hand controls, and
removable seats. I am located in Raleigh, North Carolina. For more
information, please email me at brian.baker@...

Thank you!

Also, Richard has another video that was done in the 1980's called Reach  for
Fitness.  It's really good and has nutritional information on it.   It's on
VHS and can be found on EBAY.

Shelly


In a message dated 6/5/2008 12:37:26 A.M. Eastern Daylight Time,
christine1970_2000@... writes:




I know that people like sugar. I have cut out all sugar from my diet and
have lost weight, don't know how much but I have lost. I also when I can do a
chair exercise video by Richard Simmons called Sit Tight. It can be found on
his website.

Christine (soon to move to NC)

Cast all your cares  on him because he cares for you . 1st Peter 5:7


----- Original  Message ----
From: Samantha <_uncpembrokechick218uncpembrokeunc_
(mailto:uncpembrokechick2181981@...) >
To:  _sbaofnc@yahoogroupssbao_ (mailto:sbaofnc@yahoogroups.com)
Sent:  Wednesday, June 4, 2008 6:29:23 PM
Subject: [SBAofNC] losing  weight

I was wanting to know if there is any way that i could lose  weight
without necessarily exercising? It's not very easy for me to  exercise
since I am in a wheelchair. Thanks!

[Non-text portions of  this message have been removed]







**************Get trade secrets for amazing burgers. Watch "Cooking with
Tyler Florence" on AOL Food.
(http://food.aol.com/tyler-florence?video=4?&NCID=aolfod00030000000002)


[Non-text portions of this message have been removed]

I know that people like sugar. I have cut out all sugar from my diet and have
lost weight, don't know how much but I have lost. I also when I can do a chair
exercise video by Richard Simmons called Sit Tight. It can be found on his
website.

Christine (soon to move to NC)


Cast all your cares on him because he cares for you . 1st Peter 5:7




----- Original Message ----
From: Samantha <uncpembrokechick2181981@...>
To: sbaofnc@yahoogroups.com
Sent: Wednesday, June 4, 2008 6:29:23 PM
Subject: [SBAofNC] losing weight


I was wanting to know if there is any way that i could lose weight
without necessarily exercising? It's not very easy for me to exercise
since I am in a wheelchair. Thanks!






[Non-text portions of this message have been removed]

Not to my knowledge.? The best I have found to do is remove yourself from the
comprehensive SB clinics (if you attend one) I used to attend the SB clinic
where all the children would be seen by all specialties on one day.? Since I am
down to only urology and neurosurgery,? I see each of these at Duke in their
private clinics now.? With the way Duke has grown and with things such as valet
parking now, I can be in, seen, and back out before my name would ever be called
at the Duke SB Clinic which met at Lenox Baker Children's Hospital.? It works
very well for me.? Additionally, any tests that the SB docs want done, I call
ahead of clinics and find out about and have them done here locally at testing
centers in Fayetteville (where I live) then take my films and result up to Duke
for my clinic appointments.? Like I said, that's about the best you can do to my
knowledge.? There was an attempt to have just an adult clinic day at Duke many
years ago when Joanne was still clinic coordinator for the SB clinic but as she
said in her previous email she's moved on to genetics.? Also the docs that saw
us in the adult clinic were still our pediatric doctors it was just that they
saw us on a different day/time table than the children.? I liked it when they
did that but it didn't last long primarily due to scheduling for the docs and
such.? I'm not familiar with what the other hospitals have, sorry!?? I've been a
patient at Duke for 40 years!!

Shelly Mendenhall


?


-----Original Message-----
From: Samantha <uncpembrokechick2181981@...>
To: sbaofnc@yahoogroups.com
Sent: Wed, 4 Jun 2008 7:31 pm
Subject: [SBAofNC] Adult doctors






I was wanting to know if there are any adult doctors in NC that
specializes in Spina Bifida. I am 27 years old and am tired of having
to see pediatric doctors.






[Non-text portions of this message have been removed]

I was wanting to know if there are any adult doctors in NC that
specializes in Spina Bifida. I am 27 years old and am tired of having
to see pediatric doctors.

I was wanting to know if there is any way that i could lose weight
without necessarily exercising? It's not very easy for me to exercise
since I am in a wheelchair. Thanks!

GREAT,  I know both you and your daughter will be glad! It's a wonderful
place!
Joanne

Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

"The information contained in this electronic mail transmission contains
confidential information belonging to the sender that is legally
privileged.
This information is intended only for the use of the individual or entity
named
above.  The authorized recipient of this information is prohibited from
disseminating, distributing, or copying this information.  If you have
received
this information in error please delete this message, any attachments, and
all
copies and backups from your computer and notify the sender immediately by
replying to this message or call 919.668-1100 or 1.800.MED-DUKE."



              Alfred Lyons
              <AlfredLyons@yaho
              o.com>                                                     To
              Sent by:                  sbaofnc@yahoogroups.com
              sbaofnc@yahoogrou                                          cc
              ps.com
                                                                    Subject
                                        Re: [SBAofNC] Re: Camp Carefree
              06/04/2008 01:36
              PM


              Please respond to
              sbaofnc@yahoogrou
                   ps.com











  Hi Joanne,

  We are working on the Camp Carefree application right
  now. Dr. Sandlin recommended it. He comes over to
  Asheville now and then and we see him about once every
  6 months. We are a little anxious about Ana being away
  from home for a whole week, but also think it will be
  good for both her and us!

  Al.

  --- Joanne Mackey <macke003@...> wrote:

  > Al,
  > Camp Carefree has a week set aside for children with
  > Spina Bifida which is
  > great fun and terrific peer interaction. And for
  > the young adults out
  > there, they can use Counselors almost all summer
  > long for the different
  > weeks they offer. They are located in Stoksdale NC
  > and were the hosts for
  > many a SBANC event in the past!
  > Joanne
  >
  > Joanne Mackey, RN, MSN, CPNP
  > Duke University Medical Center
  > Division of Medical Genetics
  > (919)681-1945
  >
  > "The information contained in this electronic mail
  > transmission contains
  > confidential information belonging to the sender
  > that is legally
  > privileged.
  > This information is intended only for the use of the
  > individual or entity
  > named
  > above. The authorized recipient of this information
  > is prohibited from
  > disseminating, distributing, or copying this
  > information. If you have
  > received
  > this information in error please delete this
  > message, any attachments, and
  > all
  > copies and backups from your computer and notify the
  > sender immediately by
  > replying to this message or call 919.668-1100 or
  > 1.800.MED-DUKE."
  >
  >
  >
  >
  > Alfred Lyons
  >
  > <AlfredLyons@yaho
  >
  > o.com>
  > To
  > Sent by:
  > sbaofnc@yahoogroups.com
  > sbaofnc@yahoogrou
  > cc
  > ps.com
  >
  >
  > Subject
  > Re: [SBAofNC]
  > Re: Is this group
  > 06/04/2008 12:35 active still?
  > Moving by late
  > PM summer to NC
  >
  >
  >
  >
  >
  > Please respond to
  >
  > sbaofnc@yahoogrou
  >
  > ps.com
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  >
  > Hi Shelly,
  >
  >
  >
  > I am not so concerned about the clinic, as we get
  > good
  > care from Shriners. But, I would really like to get
  >
  > Ana around some other kids with SB, as she is
  >
  > mainstreamed in school, she sometimes asks
  > questions,
  > like why is she the only kid with crutches and
  > braces,
  > or the only kid in a wheelchair, etc. If we can get
  >
  > something together, will try to get all the help we
  >
  > can, including our friend Shelly in Fayetteville!
  >
  >
  >
  > Al.
  >
  >
  >
  > --- Shelly Mendenhall <ShellyontheWeb@...>
  > wrote:
  >
  >
  > > Al, I think you're right.? If memory serves me
  >
  > > correctly (and it doesn't always) I think it was
  >
  > > Thoms Rehabilitation in those parts that had an
  > SB
  > > clinic.? I do know that you can go online to the
  >
  > > National Chapter and look up all active state
  >
  > > chapters.? I didn't see NC listed anymore which
  >
  > > leads me to believe the state association is
  > defunct
  > > as well.? I honestly don't know.? But even though
  > I
  > > am in Fayetteville, if you folks decide to get
  >
  > > something going again and need some help doing
  > some
  > > networking, don't hesitate to ask.? I think I
  > have a
  > > few contacts left that can help you out.
  >
  > >
  >
  > > Shelly
  >
  > >
  >
  > >
  >
  > > ?
  >
  > >
  >
  > >
  >
  > > -----Original Message-----
  >
  > > From: Alfred Lyons <AlfredLyons@...>
  >
  > > To: sbaofnc@yahoogroups.com
  >
  > > Sent: Wed, 4 Jun 2008 11:14 am
  >
  > > Subject: Re: [SBAofNC] Re: Is this group active
  >
  > > still? Moving by late summer to NC
  >
  > >
  >
  > >
  >
  > >
  >
  > >
  >
  > >
  >
  > >
  >
  > > Dear Shelly,
  >
  > >
  >
  > > I don't know if Mission Hospitals in Asheville
  > has
  > > an
  >
  > > SB clinic. We have been going down to Shriners
  >
  > > Hospital in Greenville, SC.
  >
  > >
  >
  > > AL.
  >
  > >
  >
  > > --- Shelly Mendenhall <ShellyontheWeb@...>
  >
  >
  === message truncated ===





[Non-text portions of this message have been removed]

Hi Joanne,

We are working on the Camp Carefree application right
now. Dr. Sandlin recommended it. He comes over to
Asheville now and then and we see him about once every
6 months. We are a little anxious about Ana being away
from home for a whole week, but also think it will be
good for both her and us!

Al.

--- Joanne Mackey <macke003@...> wrote:

> Al,
> Camp Carefree has a week set aside for children with
> Spina Bifida which is
> great fun and terrific peer interaction.  And for
> the young adults out
> there, they can use Counselors almost all summer
> long for the different
> weeks they offer. They are located in Stoksdale NC
> and were the hosts for
> many a SBANC event in the past!
> Joanne
>
> Joanne Mackey, RN, MSN, CPNP
> Duke University Medical Center
> Division of Medical Genetics
> (919)681-1945
>
> "The information contained in this electronic mail
> transmission contains
> confidential information belonging to the sender
> that is legally
> privileged.
> This information is intended only for the use of the
> individual or entity
> named
> above.  The authorized recipient of this information
> is prohibited from
> disseminating, distributing, or copying this
> information.  If you have
> received
> this information in error please delete this
> message, any attachments, and
> all
> copies and backups from your computer and notify the
> sender immediately by
> replying to this message or call 919.668-1100 or
> 1.800.MED-DUKE."
>
>
>
>
>              Alfred Lyons
>
>              <AlfredLyons@yaho
>
>              o.com>
>                    To
>              Sent by:
> sbaofnc@yahoogroups.com
>              sbaofnc@yahoogrou
>                    cc
>              ps.com
>
>
>               Subject
>                                        Re: [SBAofNC]
> Re: Is this group
>              06/04/2008 12:35          active still?
>  Moving by late
>              PM                        summer to NC
>
>
>
>
>
>              Please respond to
>
>              sbaofnc@yahoogrou
>
>                   ps.com
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>  Hi Shelly,
>
>
>
>  I am not so concerned about the clinic, as we get
> good
>  care from Shriners. But, I would really like to get
>
>  Ana around some other kids with SB, as she is
>
>  mainstreamed in school, she sometimes asks
> questions,
>  like why is she the only kid with crutches and
> braces,
>  or the only kid in a wheelchair, etc. If we can get
>
>  something together, will try to get all the help we
>
>  can, including our friend Shelly in Fayetteville!
>
>
>
>  Al.
>
>
>
>  --- Shelly Mendenhall <ShellyontheWeb@...>
> wrote:
>
>
>  > Al, I think you're right.? If memory serves me
>
>  > correctly (and it doesn't always) I think it was
>
>  > Thoms Rehabilitation in those parts that had an
> SB
>  > clinic.? I do know that you can go online to the
>
>  > National Chapter and look up all active state
>
>  > chapters.? I didn't see NC listed anymore which
>
>  > leads me to believe the state association is
> defunct
>  > as well.? I honestly don't know.? But even though
> I
>  > am in Fayetteville, if you folks decide to get
>
>  > something going again and need some help doing
> some
>  > networking, don't hesitate to ask.? I think I
> have a
>  > few contacts left that can help you out.
>
>  >
>
>  > Shelly
>
>  >
>
>  >
>
>  > ?
>
>  >
>
>  >
>
>  > -----Original Message-----
>
>  > From: Alfred Lyons <AlfredLyons@...>
>
>  > To: sbaofnc@yahoogroups.com
>
>  > Sent: Wed, 4 Jun 2008 11:14 am
>
>  > Subject: Re: [SBAofNC] Re: Is this group active
>
>  > still? Moving by late summer to NC
>
>  >
>
>  >
>
>  >
>
>  >
>
>  >
>
>  >
>
>  > Dear Shelly,
>
>  >
>
>  > I don't know if Mission Hospitals in Asheville
> has
>  > an
>
>  > SB clinic. We have been going down to Shriners
>
>  > Hospital in Greenville, SC.
>
>  >
>
>  > AL.
>
>  >
>
>  > --- Shelly Mendenhall <ShellyontheWeb@...>
>
>
=== message truncated ===

Al,
Camp Carefree has a week set aside for children with Spina Bifida which is
great fun and terrific peer interaction.  And for the young adults out
there, they can use Counselors almost all summer long for the different
weeks they offer. They are located in Stoksdale NC and were the hosts for
many a SBANC event in the past!
Joanne

Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

"The information contained in this electronic mail transmission contains
confidential information belonging to the sender that is legally
privileged.
This information is intended only for the use of the individual or entity
named
above.  The authorized recipient of this information is prohibited from
disseminating, distributing, or copying this information.  If you have
received
this information in error please delete this message, any attachments, and
all
copies and backups from your computer and notify the sender immediately by
replying to this message or call 919.668-1100 or 1.800.MED-DUKE."



              Alfred Lyons
              <AlfredLyons@yaho
              o.com>                                                     To
              Sent by:                  sbaofnc@yahoogroups.com
              sbaofnc@yahoogrou                                          cc
              ps.com
                                                                    Subject
                                        Re: [SBAofNC] Re: Is this group
              06/04/2008 12:35          active still?  Moving by late
              PM                        summer to NC


              Please respond to
              sbaofnc@yahoogrou
                   ps.com











  Hi Shelly,

  I am not so concerned about the clinic, as we get good
  care from Shriners. But, I would really like to get
  Ana around some other kids with SB, as she is
  mainstreamed in school, she sometimes asks questions,
  like why is she the only kid with crutches and braces,
  or the only kid in a wheelchair, etc. If we can get
  something together, will try to get all the help we
  can, including our friend Shelly in Fayetteville!

  Al.

  --- Shelly Mendenhall <ShellyontheWeb@...> wrote:

  > Al, I think you're right.? If memory serves me
  > correctly (and it doesn't always) I think it was
  > Thoms Rehabilitation in those parts that had an SB
  > clinic.? I do know that you can go online to the
  > National Chapter and look up all active state
  > chapters.? I didn't see NC listed anymore which
  > leads me to believe the state association is defunct
  > as well.? I honestly don't know.? But even though I
  > am in Fayetteville, if you folks decide to get
  > something going again and need some help doing some
  > networking, don't hesitate to ask.? I think I have a
  > few contacts left that can help you out.
  >
  > Shelly
  >
  >
  > ?
  >
  >
  > -----Original Message-----
  > From: Alfred Lyons <AlfredLyons@...>
  > To: sbaofnc@yahoogroups.com
  > Sent: Wed, 4 Jun 2008 11:14 am
  > Subject: Re: [SBAofNC] Re: Is this group active
  > still? Moving by late summer to NC
  >
  >
  >
  >
  >
  >
  > Dear Shelly,
  >
  > I don't know if Mission Hospitals in Asheville has
  > an
  > SB clinic. We have been going down to Shriners
  > Hospital in Greenville, SC.
  >
  > AL.
  >
  > --- Shelly Mendenhall <ShellyontheWeb@...>
  > wrote:
  >
  > > I was going to suggest the same thing that you
  > folks
  > > in that area do some networking together and
  > perhaps
  > > rebuild the Western NC chapter.? I'm sure the
  > > hospital in Asheville would allow you to advertise
  > > during their clinic (do they still have an SB
  > > clinic) that you are trying to rebuild the
  > group.??
  > > It just takes interested parties!
  > >
  > > Shelly
  > >
  > >
  > > ?
  > >
  > >
  > > -----Original Message-----
  > > From: Alfred Lyons <AlfredLyons@...>
  > > To: sbaofnc@yahoogroups.com
  > > Sent: Wed, 4 Jun 2008 10:40 am
  > > Subject: Re: [SBAofNC] Re: Is this group active
  > > still? Moving by late summer to NC
  > >
  > >
  > >
  > >
  > >
  > >
  > > Dear Chris,
  > >
  > > We would be interested in being a part of a
  > > reconstituted Western NC Chapter, should the
  > > opportunity present. Keep in touch with us as you
  > > relocate!
  > >
  > > THanks, Al Lyons & Family in Asheville
  > >
  > > --- Chris <christine1970_2000@...> wrote:
  > >
  > > > thank you all for the responses. I sure hope
  > that
  > > > more people join this that live in the western
  > > part
  > > > of the state. I would like to connect with some
  > > > adults with SB. I love it that there are parents
  > > > with little ones on here that live in the
  > Western
  > > > part of the state. I hope that maybe I can be an
  > > > encouragement to you.
  > > >
  > > > Christine
  > > >
  > > >
  > > > Cast all your cares on him because he cares for
  > > you
  > > > . 1st Peter 5:7
  > > >
  > > >
  > > >
  > > >
  > > > ----- Original Message ----
  > > > From: Lisa Pubantz <lpubantz77@...>
  > > > To: sbaofnc@yahoogroups.com
  > > > Sent: Tuesday, June 3, 2008 4:55:22 PM
  > > > Subject: Re: [SBAofNC] Re: Is this group active
  > > > still? Moving by late summer to NC
  > > >
  > > >
  > > > Christine,
  > > > I'm 31 years old, I have SB, and I live in
  > > > Winston-Salem NC in a HUD-assisted apartment for
  > > > mobility impaired people who have low income.
  > I've
  > > > been living in NC all my life and I love it!
  > Hope
  > > > you enjoy it here as much as I do!
  > > >
  > > > Lisa Pubantz
  > > > ----- Original Message -----
  > > > From: cynthia teresa
  > > > To: sbaofnc@yahoogroups .com
  > > > Sent: Tuesday, June 03, 2008 5:34 PM
  > > > Subject: Re: [SBAofNC] Re: Is this group active
  > > > still? Moving by late summer to NC
  > > >
  > > > I live in Monroe, NC. I have a 5 yr. old girl
  > with
  > > > SB. I think you will like it here in NC
  > Christine.
  > > > I've been here for 6 years now, and I love it!
  > > >
  > > > Cynthia
  > > >
  > > > lost_star_vega <no_reply@yahoogroup s.com>
  > wrote:
  > > > I'm in the Charlotte area. I have a 3 yr old
  > girl
  > > > with SB. I have lived
  > > > in NC my whole life, it is a very nice place. I
  > > hope
  > > > your move goes
  > > > well.
  > > >
  > > > ~Jamie
  > > >
  > > > --- In sbaofnc@yahoogroups .com, "christine"
  > > > <christine1970_ 2000@...>
  > > > wrote:
  > > > >
  > > > > I am moving to the Rutherfordton area. I had
  > > > written the group back in
  > > > > Feb of this year I think saying that I would
  > be
  > > > moving to NC. I would
  > > > > like very much to meet up with some adults
  > with
  > > SB
  > > > if there are any on
  > > > > this list. I am 37 years old. Been living in
  > > > Budapest Hungary for the
  > > > > last 8yrs. Will be in PA for the summer but
  > > should
  > > > be in the
  > > > > Rutherfordton area by late summer. I see there
  > > is
  > > > a group from
  > > > > Asheville. Are their any adults with SB
  > involved
  > > > in the group? If not
  > > > > I would be more than happy to be a mentor or
  > > > something to any one that
  > > > > would like one. Or just be a friend to someone
  > > > >
  > > > > Blessings
  > > > > Christine
  > > > >
  > > >
  > > > [Non-text portions of this message have been
  > > > removed]
  > > >
  > > > [Non-text portions of this message have been
  > > > removed]
  > > >
  > > >
  > > >
  > > >
  > > >
  > > >
  > > > [Non-text portions of this message have been
  > > > removed]
  > > >
  > > >
  > > > ------------------------------------
  > > >
  > > > Yahoo! Groups Links
  > > >
  > > >
  >
  === message truncated ===





[Non-text portions of this message have been removed]

Al, the reason I mentioned the clinic is not for you to change your medical care
but to see if they would let you promote a possible new support group for your
area, you could find like individuals to get involved with.? The clinics are
usually the greatest place to initiate development of a new idea even for ones
away from a hospital setting.

Susan- OMG no wonder the state chapter is not building well if they are now
required to have 50 K in order to participate on a national level.?? Geez, we
used to occasionally have that kind of cash come in when we had the professional
touring company doing puppets shows for us in the Western end of the state but
as you know, that faltered too after awhile.?? Last I heard,the lady that owned
the touring co.? out of FL we dealt with had sold it to one of her employees and
I remember something about some of his dealings being "less than
professional".?? So, I'd caution against going with them even if they were in
effect still open anymore. Granted, much of this is from folks I've kept in
contact with over the years.?? So much could be "hear say".

Shelly


?


-----Original Message-----
From: Alfred Lyons <AlfredLyons@...>
To: sbaofnc@yahoogroups.com
Sent: Wed, 4 Jun 2008 12:35 pm
Subject: Re: [SBAofNC] Re: Is this group active still? Moving by late summer to
NC






Hi Shelly,

I am not so concerned about the clinic, as we get good
care from Shriners. But, I would really like to get
Ana around some other kids with SB, as she is
mainstreamed in school, she sometimes asks questions,
like why is she the only kid with crutches and braces,
or the only kid in a wheelchair, etc. If we can get
something together, will try to get all the help we
can, including our friend Shelly in Fayetteville!

Al.

--- Shelly Mendenhall <ShellyontheWeb@...> wrote:

> Al, I think you're right.? If memory serves me
> correctly (and it doesn't always) I think it was
> Thoms Rehabilitation in those parts that had an SB
> clinic.? I do know that you can go online to the
> National Chapter and look up all active state
> chapters.? I didn't see NC listed anymore which
> leads me to believe the state association is defunct
> as well.? I honestly don't know.? But even though I
> am in Fayetteville, if you folks decide to get
> something going again and need some help doing some
> networking, don't hesitate to ask.? I think I have a
> few contacts left that can help you out.
>
> Shelly
>
>
> ?
>
>
> -----Original Message-----
> From: Alfred Lyons <AlfredLyons@...>
> To: sbaofnc@yahoogroups.com
> Sent: Wed, 4 Jun 2008 11:14 am
> Subject: Re: [SBAofNC] Re: Is this group active
> still? Moving by late summer to NC
>
>
>
>
>
>
> Dear Shelly,
>
> I don't know if Mission Hospitals in Asheville has
> an
> SB clinic. We have been going down to Shriners
> Hospital in Greenville, SC.
>
> AL.
>
> --- Shelly Mendenhall <ShellyontheWeb@...>
> wrote:
>
> > I was going to suggest the same thing that you
> folks
> > in that area do some networking together and
> perhaps
> > rebuild the Western NC chapter.? I'm sure the
> > hospital in Asheville would allow you to advertise
> > during their clinic (do they still have an SB
> > clinic) that you are trying to rebuild the
> group.??
> > It just takes interested parties!
> >
> > Shelly
> >
> >
> > ?
> >
> >
> > -----Original Message-----
> > From: Alfred Lyons <AlfredLyons@...>
> > To: sbaofnc@yahoogroups.com
> > Sent: Wed, 4 Jun 2008 10:40 am
> > Subject: Re: [SBAofNC] Re: Is this group active
> > still? Moving by late summer to NC
> >
> >
> >
> >
> >
> >
> > Dear Chris,
> >
> > We would be interested in being a part of a
> > reconstituted Western NC Chapter, should the
> > opportunity present. Keep in touch with us as you
> > relocate!
> >
> > THanks, Al Lyons & Family in Asheville
> >
> > --- Chris <christine1970_2000@...> wrote:
> >
> > > thank you all for the responses. I sure hope
> that
> > > more people join this that live in the western
> > part
> > > of the state. I would like to connect with some
> > > adults with SB. I love it that there are parents
> > > with little ones on here that live in the
> Western
> > > part of the state. I hope that maybe I can be an
> > > encouragement to you.
> > >
> > > Christine
> > >
> > >
> > > Cast all your cares on him because he cares for
> > you
> > > . 1st Peter 5:7
> > >
> > >
> > >
> > >
> > > ----- Original Message ----
> > > From: Lisa Pubantz <lpubantz77@...>
> > > To: sbaofnc@yahoogroups.com
> > > Sent: Tuesday, June 3, 2008 4:55:22 PM
> > > Subject: Re: [SBAofNC] Re: Is this group active
> > > still? Moving by late summer to NC
> > >
> > >
> > > Christine,
> > > I'm 31 years old, I have SB, and I live in
> > > Winston-Salem NC in a HUD-assisted apartment for
> > > mobility impaired people who have low income.
> I've
> > > been living in NC all my life and I love it!
> Hope
> > > you enjoy it here as much as I do!
> > >
> > > Lisa Pubantz
> > > ----- Original Message -----
> > > From: cynthia teresa
> > > To: sbaofnc@yahoogroups .com
> > > Sent: Tuesday, June 03, 2008 5:34 PM
> > > Subject: Re: [SBAofNC] Re: Is this group active
> > > still? Moving by late summer to NC
> > >
> > > I live in Monroe, NC. I have a 5 yr. old girl
> with
> > > SB. I think you will like it here in NC
> Christine.
> > > I've been here for 6 years now, and I love it!
> > >
> > > Cynthia
> > >
> > > lost_star_vega <no_reply@yahoogroup s.com>
> wrote:
> > > I'm in the Charlotte area. I have a 3 yr old
> girl
> > > with SB. I have lived
> > > in NC my whole life, it is a very nice place. I
> > hope
> > > your move goes
> > > well.
> > >
> > > ~Jamie
> > >
> > > --- In sbaofnc@yahoogroups .com, "christine"
> > > <christine1970_ 2000@...>
> > > wrote:
> > > >
> > > > I am moving to the Rutherfordton area. I had
> > > written the group back in
> > > > Feb of this year I think saying that I would
> be
> > > moving to NC. I would
> > > > like very much to meet up with some adults
> with
> > SB
> > > if there are any on
> > > > this list. I am 37 years old. Been living in
> > > Budapest Hungary for the
> > > > last 8yrs. Will be in PA for the summer but
> > should
> > > be in the
> > > > Rutherfordton area by late summer. I see there
> > is
> > > a group from
> > > > Asheville. Are their any adults with SB
> involved
> > > in the group? If not
> > > > I would be more than happy to be a mentor or
> > > something to any one that
> > > > would like one. Or just be a friend to someone
> > > >
> > > > Blessings
> > > > Christine
> > > >
> > >
> > > [Non-text portions of this message have been
> > > removed]
> > >
> > > [Non-text portions of this message have been
> > > removed]
> > >
> > >
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been
> > > removed]
> > >
> > >
> > > ------------------------------------
> > >
> > > Yahoo! Groups Links
> > >
> > >
>
=== message truncated ===






[Non-text portions of this message have been removed]