but she wasn't a VA   she only has medical and i am out here in calif  




________________________________
From: Sara Schneider <coffteawoman4christ@...>
To: spinabifidacentral@yahoogroups.com
Sent: Thu, November 12, 2009 7:34:38 AM
Subject: Re: [Spina Bifida Central] hello

 
Medicaid AND VA??? Does he have SBHC thru the VA?

____________ _________ _________ __
From: Tami Shuck <tami_leonard69@ yahoo.com>
To: spinabifidacentral@ yahoogroups. com
Cc: tami_leonard69@ yahoo.com
Sent: Thu, November 12, 2009 5:27:53 AM
Subject: Re: [Spina Bifida Central] hello

 
no, I'am not sure, is she on medicade, or medicare? My son is on medicade and VA
so I'am gona try there.
The only things I can suggest is to call them and ask if they can suggest
anything, or maybe her Dr.
Sorry I wasnt't ant better help. Mom of 18 year old.

____________ _________ _________ __
From: David Alvarado <davidjohn831ca@ yahoo.com>
To: spinabifidacentral@ yahoogroups. com
Sent: Wed, November 11, 2009 6:54:18 PM
Subject: [Spina Bifida Central] hello

 
my name is David my girlfriend has spina bifida and  I am trying   to get her
an electric  wheel chair and i have  not  had any luck on my  side, do u
know where i can  get some help on getting one, get back to me.

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

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

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







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

she had but theres alot of  red tape in all that and i can't even reach the 
SBA   offices  in calif 




________________________________
From: mike s <handsome_loving_kind@...>
To: spinabifidacentral@yahoogroups.com
Sent: Thu, November 12, 2009 3:33:49 AM
Subject: Re: [Spina Bifida Central] hello

 
david
 
has your gf been to a doctor about her spina bifida? if she has he or she can
write out a script for a wheelchair based upon her needs

--- On Wed, 11/11/09, David Alvarado <davidjohn831ca@ yahoo.com> wrote:

From: David Alvarado <davidjohn831ca@ yahoo.com>
Subject: [Spina Bifida Central] hello
To: spinabifidacentral@ yahoogroups. com
Date: Wednesday, November 11, 2009, 7:54 PM

 

my name is David my girlfriend has spina bifida and  I am trying   to get her
an electric  wheel chair and i have  not  had any luck on my  side, do u
know where i can  get some help on getting one, get back to me.

[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]

My girl friend only has medical  and they wont help  her




________________________________
From: Tami Shuck <tami_leonard69@...>
To: spinabifidacentral@yahoogroups.com
Cc: tami_leonard69@...
Sent: Thu, November 12, 2009 3:27:53 AM
Subject: Re: [Spina Bifida Central] hello

 
no, I'am not sure, is she on medicade, or medicare? My son is on medicade and VA
so I'am gona try there.
The only things I can suggest is to call them and ask if they can suggest
anything, or maybe her Dr.
Sorry I wasnt't ant better help. Mom of 18 year old.

____________ _________ _________ __
From: David Alvarado <davidjohn831ca@ yahoo.com>
To: spinabifidacentral@ yahoogroups. com
Sent: Wed, November 11, 2009 6:54:18 PM
Subject: [Spina Bifida Central] hello

 
my name is David my girlfriend has spina bifida and  I am trying   to get her
an electric  wheel chair and i have  not  had any luck on my  side, do u
know where i can  get some help on getting one, get back to me.

[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]

I have needed to use crutches from time to time and backpacks have worked well
for me.  The backpack just needs to have a strap that comes around the lower
chest, so the arm straps don't slide off the shoulders.  I also use a small
fanny pack to carry small items (rater than a purse), so my hands are free. 
Check at places like Big 5, Dick's, Sports Authority.  You don't need to spend a
ton of money, just enough to get something functional.


I hope this is helpful.


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

Medicaid AND VA??? Does he have SBHC thru the VA?




________________________________
From: Tami Shuck <tami_leonard69@...>
To: spinabifidacentral@yahoogroups.com
Cc: tami_leonard69@...
Sent: Thu, November 12, 2009 5:27:53 AM
Subject: Re: [Spina Bifida Central] hello

 
no, I'am not sure, is she on medicade, or medicare? My son is on medicade and VA
so I'am gona try there.
The only things I can suggest is to call them and ask if they can suggest
anything, or maybe her Dr.
Sorry I wasnt't ant better help. Mom of 18 year old.

____________ _________ _________ __
From: David Alvarado <davidjohn831ca@ yahoo.com>
To: spinabifidacentral@ yahoogroups. com
Sent: Wed, November 11, 2009 6:54:18 PM
Subject: [Spina Bifida Central] hello

 
my name is David my girlfriend has spina bifida and  I am trying   to get her
an electric  wheel chair and i have  not  had any luck on my  side, do u
know where i can  get some help on getting one, get back to me.

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

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


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Reply to sender | Reply to group Messages in this topic (49)
Recent Activity:  * New Members 5
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[Non-text portions of this message have been removed]

good luck with your adoption and god bless you for standing up about the
condition of sb....i have it and im tired of everyone calling it a disease like
you said

--- On Wed, 11/11/09, barnesfoster <barnesfoster@...> wrote:


From: barnesfoster <barnesfoster@...>
Subject: [Spina Bifida Central] Re: Hello Everyone
To: spinabifidacentral@yahoogroups.com
Date: Wednesday, November 11, 2009, 4:28 PM


 



I am a theraputic foster care provider and I have cared for many children with a
variety of congenital birth defects including the baby I now have with SB that
we are adopting, and many people do call whatever they may have been born with a
disease. It is not intended to hurt it is just because they don't understand
what they are saying or how it makes the person they are refering to feel. I
have a child I adopted with "Recessive Dystrophic Epidermolysis Bullosa", a very
painful skin disorder, he is wrapped from head to toe with bandages for
proctetion because he is missing the part fo his skin that keeps it attached and
it is sad because people often refer to what he has as a disease, even news
reporters. But you need to understand that it really is out of innocent
ignorance. I thought this group was supposed to be a support group. Why are
members always tearing people apart? Sara you often sign in Jesus. As a fellow
Christian and a grandmother I have
  tried to learn what the Bible means when it says "speak the truth in love". You
have a much bigger impact in what you have to say if you can say it in a gentle
loving manner.
Kathy











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

may god continue to bless you and your beautifull family

--- On Wed, 11/11/09, counselorwillingham@...
<counselorwillingham@...> wrote:


From: counselorwillingham@... <counselorwillingham@...>
Subject: Re: [Spina Bifida Central] Re: Hello Everyone
To: spinabifidacentral@yahoogroups.com
Date: Wednesday, November 11, 2009, 9:25 PM


 



So very well stated Ms. Kathy!
Sent via BlackBerry by AT&T

-----Original Message-----
From: "barnesfoster" <barnesfoster@ juno.com>
Date: Wed, 11 Nov 2009 21:28:37
To: <spinabifidacentral@ yahoogroups. com>
Subject: [Spina Bifida Central] Re: Hello Everyone

I am a theraputic foster care provider and I have cared for many children with a
variety of congenital birth defects including the baby I now have with SB that
we are adopting, and many people do call whatever they may have been born with a
disease. It is not intended to hurt it is just because they don't understand
what they are saying or how it makes the person they are refering to feel. I
have a child I adopted with "Recessive Dystrophic Epidermolysis Bullosa", a very
painful skin disorder, he is wrapped from head to toe with bandages for
proctetion because he is missing the part fo his skin that keeps it attached and
it is sad because people often refer to what he has as a disease, even news
reporters. But you need to understand that it really is out of innocent
ignorance. I thought this group was supposed to be a support group. Why are
members always tearing people apart? Sara you often sign in Jesus. As a fellow
Christian and a grandmother I have
  tried to learn what the Bible means when it says "speak the truth in love". You
have a much bigger impact in what you have to say if you can say it in a gentle
loving manner.
Kathy



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











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

david
 
has your gf been to a doctor about her spina bifida? if she has he or she can
write out a script for a wheelchair based upon her needs

--- On Wed, 11/11/09, David Alvarado <davidjohn831ca@...> wrote:


From: David Alvarado <davidjohn831ca@...>
Subject: [Spina Bifida Central] hello
To: spinabifidacentral@yahoogroups.com
Date: Wednesday, November 11, 2009, 7:54 PM


 



my name is David my girlfriend has spina bifida and  I am trying   to get her
an electric  wheel chair and i have  not  had any luck on my  side, do u
know where i can  get some help on getting one, get back to me.

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











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

no, I'am not sure, is she on medicade, or medicare? My son is on medicade and VA
so I'am gona try there.
The only things I can suggest is to call them and ask if they can suggest
anything, or maybe her Dr.
Sorry I wasnt't ant better help. Mom of 18 year old.




________________________________
From: David Alvarado <davidjohn831ca@...>
To: spinabifidacentral@yahoogroups.com
Sent: Wed, November 11, 2009 6:54:18 PM
Subject: [Spina Bifida Central] hello

 
my name is David my girlfriend has spina bifida and  I am trying   to get her
an electric  wheel chair and i have  not  had any luck on my  side, do u
know where i can  get some help on getting one, get back to me.

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







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

Looking for insight for those with children who use crutches and also need a
back pack of sorts. Up to now Brenden's been using a rolling back pack - no
crutches. Physiatrist strongly recommends using crutches - which we will
start once they come in. But now we have to figure out the back pack deal.
He recommended a hiking pack that's very high quality - I'm pulling up
blanks.

thanks
karen



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

So very well stated Ms.  Kathy!
Sent via BlackBerry by AT&T

-----Original Message-----
From: "barnesfoster" <barnesfoster@...>
Date: Wed, 11 Nov 2009 21:28:37
To: <spinabifidacentral@yahoogroups.com>
Subject: [Spina Bifida Central] Re: Hello Everyone

I am a theraputic foster care provider and I have cared for many children with a
variety of congenital birth defects including the baby I now have with SB that
we are adopting, and many people do call whatever they may have been born with a
disease.  It is not intended to hurt it is just because they don't understand
what they are saying or how it makes the person they are refering to feel.  I
have a child I adopted with "Recessive Dystrophic Epidermolysis Bullosa",  a
very painful skin disorder, he is wrapped from head to toe with bandages for
proctetion because he is missing the part fo his skin that keeps it attached and
it is sad because people often refer to what he has as a disease, even news
reporters.  But you need to understand that it really is out of innocent
ignorance.  I thought this group was supposed to be a support group.  Why are
members always tearing people apart?  Sara you often sign in Jesus. As a fellow
Christian and a grandmother I have tried to learn what the Bible means when it
says "speak the truth in love".  You have a much bigger impact in what you have
to say if you can say it in a gentle loving manner.
Kathy




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

my name is David my girlfriend has spina bifida and  I am trying   to get her an
electric  wheel chair and i have  not  had any luck on my  side, do u know where
i can  get some help on getting one, get back to me.




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

I am a theraputic foster care provider and I have cared for many children with a
variety of congenital birth defects including the baby I now have with SB that
we are adopting, and many people do call whatever they may have been born with a
disease.  It is not intended to hurt it is just because they don't understand
what they are saying or how it makes the person they are refering to feel.  I
have a child I adopted with "Recessive Dystrophic Epidermolysis Bullosa",  a
very painful skin disorder, he is wrapped from head to toe with bandages for
proctetion because he is missing the part fo his skin that keeps it attached and
it is sad because people often refer to what he has as a disease, even news
reporters.  But you need to understand that it really is out of innocent
ignorance.  I thought this group was supposed to be a support group.  Why are
members always tearing people apart?  Sara you often sign in Jesus. As a fellow
Christian and a grandmother I have tried to learn what the Bible means when it
says "speak the truth in love".  You have a much bigger impact in what you have
to say if you can say it in a gentle loving manner.
Kathy

it might be embaressing as you would say,but it helps out alot.....ive had mine
over 30 yrs and ive had very minimal trouble with it

--- On Wed, 11/11/09, Sara Schneider <coffteawoman4christ@...> wrote:


From: Sara Schneider <coffteawoman4christ@...>
Subject: Re: [Spina Bifida Central] Bladder Augmentation
To: spinabifidacentral@yahoogroups.com
Date: Wednesday, November 11, 2009, 10:34 AM


 



For a lot of people bags are very embarrassing.

____________ _________ _________ __
From: mike s <handsome_loving_ kind@yahoo. com>
To: spinabifidacentral@ yahoogroups. com
Sent: Tue, November 10, 2009 3:32:23 PM
Subject: Re: [Spina Bifida Central] Bladder Augmentation

 
why not just talk to your doctor about getting an urostomy  that way the urine
would go into a bag and it would need emptying every couple of hrs depending on
how much you drank

--- On Tue, 11/10/09, LightningGrl2121@ aol.com <LightningGrl2121@ aol.com>
wrote:

From: LightningGrl2121@ aol.com <LightningGrl2121@ aol.com>
Subject: Re: [Spina Bifida Central] Bladder Augmentation
To: spinabifidacentral@ yahoogroups. com
Date: Tuesday, November 10, 2009, 4:01 PM

 

You mean a mitrofanoff? That would be where you cath through your belly
button. I love mine. I had it separate from the bladder augmentation, but it
is better to go ahead and do them both at the same time. If he has a VP
Shunt also make sure that they do not touch it during surgery. They tried to
move mine out of the way and I ended up in the hospital 10 days after being
released due to a shunt infection. 10 more malfunctions in 3 months. Of
course, I ended up being one of the 20% this happens to. The only con is that
the surgery is very long and the clean out for it, isn't fun at all.

Summer

In a message dated 11/10/2009 12:43:55 P.M. Eastern Standard Time,
bobbyrdsmom@ yahoo.com writes:

Hi all, long time reader, new poster.. Recently my 4 1/2 yr old son got
botox shots in his bladder to try to lower the pressure. After 6 weeks, we
went back for urodynamics and it didn't help. They are talking about maybe
doing the bladder augmentation with a port. Can someone give me some pros and
cons of this surgery? Do they have to put in a port? Does the patient like
the port better to cath through than doing it below?

Any information is greatly appreciated.
Mom

[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]

For a lot of people bags are very embarrassing.




________________________________
From: mike s <handsome_loving_kind@...>
To: spinabifidacentral@yahoogroups.com
Sent: Tue, November 10, 2009 3:32:23 PM
Subject: Re: [Spina Bifida Central] Bladder Augmentation

 
why not just talk to your doctor about getting an urostomy  that way the urine
would go into a bag and it would need emptying every couple of hrs depending on
how much you drank

--- On Tue, 11/10/09, LightningGrl2121@ aol.com <LightningGrl2121@ aol.com>
wrote:

From: LightningGrl2121@ aol.com <LightningGrl2121@ aol.com>
Subject: Re: [Spina Bifida Central] Bladder Augmentation
To: spinabifidacentral@ yahoogroups. com
Date: Tuesday, November 10, 2009, 4:01 PM

 

You mean a mitrofanoff? That would be where you cath through your belly
button. I love mine. I had it separate from the bladder augmentation, but it
is better to go ahead and do them both at the same time. If he has a VP
Shunt also make sure that they do not touch it during surgery. They tried to
move mine out of the way and I ended up in the hospital 10 days after being
released due to a shunt infection. 10 more malfunctions in 3 months. Of
course, I ended up being one of the 20% this happens to. The only con is that
the surgery is very long and the clean out for it, isn't fun at all.

Summer

In a message dated 11/10/2009 12:43:55 P.M. Eastern Standard Time,
bobbyrdsmom@ yahoo.com writes:

Hi all, long time reader, new poster.. Recently my 4 1/2 yr old son got
botox shots in his bladder to try to lower the pressure. After 6 weeks, we
went back for urodynamics and it didn't help. They are talking about maybe
doing the bladder augmentation with a port. Can someone give me some pros and
cons of this surgery? Do they have to put in a port? Does the patient like
the port better to cath through than doing it below?

Any information is greatly appreciated.
Mom

[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]

The website link for AMBUCS previously posted leads to a very different site
than the poster intended.  Try ambucs.com instead!

That was very sweet! I am glad Charlie is walking!
Angel and Brianah (6yrs  L4 L5)






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

Feel free to respond back to this site so others can read and benefit from
opinions as well.


Thanks

Brent

Hello All,
Been awhile since I have been on the site.
Please copy and paste this link below into your browser and read this article. I
think you will all relate and appreciate it.  Visit the Desert Sun Newspaper
below.  Feel fre to respond back to Shannon at msthngg421@... if you would
like. I am sure she would appreciate your feedback. I am very proud of her to
have the courage to trell her story to the public.

Thank you,

Brent

http://www.mydesert.com/article/20091110/LIFESTYLES12/911100312&referrer=FRONTPA\
GECAROUSEL?GID=taoYimO/8UqsHAzN4VysubHUpdxmPdBodoFSTHkptQU%3D

Urostomies are old. Doctors don't like doing them on young kids now. So,
the mitrofanoff is the best thing these days. Really simple to use that
doesn't  require a bag. A lot less trouble.

Summer


In a message dated 11/10/2009 4:33:05 P.M. Eastern Standard Time,
handsome_loving_kind@... writes:




why not just talk to your doctor about getting an urostomy  that way  the
urine would go into a bag and it would need emptying every couple of hrs
depending on how much you drank

--- On Tue, 11/10/09, _LightningGrl2121@Lightni_
(mailto:LightningGrl2121@...)   <_LightningGrl2121@Lightni_
(mailto:LightningGrl2121@...) >
wrote:

From: _LightningGrl2121@Lightni_ (mailto:LightningGrl2121@...)
<_LightningGrl2121@Lightni_ (mailto:LightningGrl2121@...) >
Subject:  Re: [Spina Bifida Central] Bladder Augmentation
To: _spinabifidacentral@spinabifidacspi_
(mailto:spinabifidacentral@yahoogroups.com)
Date:  Tuesday, November 10, 2009, 4:01 PM



You mean a  mitrofanoff? That would be where you cath through your belly
button. I  love mine. I had it separate from the bladder augmentation, but
it
is  better to go ahead and do them both at the same time. If he has a VP
Shunt  also make sure that they do not touch it during surgery. They tried
to
move mine out of the way and I ended up in the hospital 10 days after
being
released due to a shunt infection. 10 more malfunctions in 3 months.  Of
course, I ended up being one of the 20% this happens to. The only con  is
that
the surgery is very long and the clean out for it, isn't fun at  all.

Summer

In a message dated 11/10/2009 12:43:55 P.M. Eastern  Standard Time,
bobbyrdsmom@ yahoo.com writes:

Hi all, long time  reader, new poster. Recently my 4 1/2 yr old son got
botox shots in his  bladder to try to lower the pressure. After 6 weeks, we
went back for  urodynamics and it didn't help. They are talking about maybe
doing the  bladder augmentation with a port. Can someone give me some pros
and
cons  of this surgery? Do they have to put in a port? Does the patient like
the  port better to cath through than doing it below?

Any information is  greatly appreciated.
Mom

[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]

why not just talk to your doctor about getting an urostomy  that way the urine
would go into a bag and it would need emptying every couple of hrs depending on
how much you drank

--- On Tue, 11/10/09, LightningGrl2121@... <LightningGrl2121@...> wrote:


From: LightningGrl2121@... <LightningGrl2121@...>
Subject: Re: [Spina Bifida Central] Bladder Augmentation
To: spinabifidacentral@yahoogroups.com
Date: Tuesday, November 10, 2009, 4:01 PM


 



You mean a mitrofanoff? That would be where you cath through your belly
button. I love mine. I had it separate from the bladder augmentation, but it
is better to go ahead and do them both at the same time. If he has a VP
Shunt also make sure that they do not touch it during surgery. They tried to
move mine out of the way and I ended up in the hospital 10 days after being
released due to a shunt infection. 10 more malfunctions in 3 months. Of
course, I ended up being one of the 20% this happens to. The only con is that
the surgery is very long and the clean out for it, isn't fun at all.

Summer


In a message dated 11/10/2009 12:43:55 P.M. Eastern Standard Time,
bobbyrdsmom@ yahoo.com writes:

Hi all, long time reader, new poster. Recently my 4 1/2 yr old son got
botox shots in his bladder to try to lower the pressure. After 6 weeks, we
went back for urodynamics and it didn't help. They are talking about maybe
doing the bladder augmentation with a port. Can someone give me some pros and
cons of this surgery? Do they have to put in a port? Does the patient like
the port better to cath through than doing it below?

Any information is greatly appreciated.
Mom

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











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

You mean a mitrofanoff? That would be where you cath through your belly
button. I love mine. I had it separate from the bladder augmentation, but it
is  better to go ahead and do them both at the same time. If he has a VP
Shunt also  make sure that they do not touch it during surgery. They tried to
move mine out  of the way and I ended up in the hospital 10 days after being
released due to a  shunt infection. 10 more malfunctions in 3 months. Of
course, I ended up  being one of the 20% this happens to. The only con is that
the  surgery is very long and the clean out for it, isn't fun at all.

Summer


In a message dated 11/10/2009 12:43:55 P.M. Eastern Standard Time,
bobbyrdsmom@... writes:




Hi all, long time reader, new poster. Recently my 4 1/2 yr old son got
botox shots in his bladder to try to lower the pressure. After 6 weeks, we
went back for urodynamics and it didn't help. They are talking about maybe
doing the bladder augmentation with a port. Can someone give me some pros and
cons of this surgery? Do they have to put in a port? Does the patient like
the  port better to cath through than doing it below?

Any information is  greatly appreciated.
Mom







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

Just make sure they explain it to you what they are going to do and what the
plan is.  We didn't get that and I had a weird feeling about.  Turns out my
gut was right.  When they remved the first set of casts she had SEVERE pressure
sores :( 
 
Needless to say, we got a second opinion!  She has had the tetonomy done and it
wasn't that bad. 
 
Good luck with everything!

--- On Sat, 11/7/09, totlybatty <batty4bats@...> wrote:


From: totlybatty <batty4bats@...>
Subject: [Spina Bifida Central] Re: Hi :)
To: spinabifidacentral@yahoogroups.com
Date: Saturday, November 7, 2009, 1:15 PM


 



Thanks everybody, So far I've seen the PNP at the spina bifida clinic here and
she recommended a few doctors, all in the same clinic I think, which are
actually the ones everybody else I know recommended so I feel pretty comfortable
with that. I'm on medicaid now too, lifesaver for sure, we would be in big
trouble if I just had my old insurance for all this. She automatically stays on
for a full year but I definitely plan to know where it all goes after that long
before it gets here. I'm actually kind of excited to see all the little
wheelchairs and stuff, does that sound crazy? Adaptive devices have always
fascinated me. I actually have an MD, right now I walk just fine but eventually
I'll be in a wheelchair, so if she ends up in one too then we can be wheelchair
buddies :) and roll around everywhere together, I'll have an electric one cause
by that time my arms won't be strong enough to push myself around much, and she
can hang onto me when she gets
  tired if she's in a manual. Or if I end up in a wheelchair soon, hopefully not,
but then she can just ride on my lap, I ride on my sisters lap sometimes (she's
in a wheelchair now) and her kids ride on her footstool all the time. As much as
I would love to be able to run around, and would LOVE for her to be able to,
it's kind of fun figuring out different ways of doing things, like a puzzle.
Crazy?

Wendy, do you mind if I ask what happened with her feet? Our girl also has the
bilateral club feet. That sounds like the easy part, well longer, but not as
scary as everything else. Here they said they would try the progressive casting
first, which I've read online is the best way to go, avoiding surgery, and if
that doesn't work then they will go in and clip the tendon. I would love to know
what happened so I can be sure to avoid it.

Sara, The conference sounds fun, summers are really busy for us right now so it
might not be the first year but we will definitely look into that. It would be
good for her to have friends with the same issues. I know there are several
other kids around here too, I know people who know a few of them.











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

Hi all, long time reader, new poster.  Recently my 4 1/2 yr old son got botox
shots in his bladder to try to lower the pressure.  After 6 weeks, we went back
for urodynamics and it didn't help. They are talking about maybe doing the
bladder augmentation with a port.  Can someone give me some pros and cons of
this surgery?  Do they have to put in a port?  Does the patient like the port
better to cath through than doing it below?

Any information is greatly appreciated.
Mom

Check to see if you have an AMBUCKS chapter in your state.  They are a wonderful
non profit organization that supplies these bikes to children.  My son is on his
second bike now.  He out grew the first one.  Go to ambucks.com to see pics of
the amtryke.  They are a very generous organization that asks for no payment. 
The bikes are a gift.  You can see a picture of my son Daniel riding his newest
one at Lifestyleaccelerator.com .  If you have any questions, let me know.
Heather - Daniel's mom




________________________________
From: christina FULTON <cmpopafulton@...>
To: spinabifidacentral@yahoogroups.com
Sent: Tue, November 10, 2009 9:54:32 AM
Subject: [Spina Bifida Central] Hand trike


I am looking for a hand trike can anyone guide me in the right direction! It is
for my 3 year old son!

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







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

I am looking for a hand trike can anyone guide me in the right direction! It is
for my 3 year old son!




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

first off it was a mistake. She is reaching out to us to assist in education we
should be welcoming and educating not getting angry and being rude. To answer
your question there is a wonderful sb clinic at university hospital. They also
have a wonderful library. I am involved in the Sba assoc in toledo area and we
service cleveland feel free to private email me for more info or i can even call
you to talk about things!

--- On Tue, 11/10/09, Stormie Willingham <counselorwillingham@...> wrote:

From: Stormie Willingham <counselorwillingham@...>
Subject: Re: [Spina Bifida Central] Re: Hello Everyone
To: spinabifidacentral@yahoogroups.com
Date: Tuesday, November 10, 2009, 10:50 AM
















 









       Yes it has!  Judge not less yee be judged!  May have been a mistake or
misinformation but in  my opinion, it was obviously well intended!  Why make a
mountain out of a mole hill!  Politely redirect to the proper terminology and
move on with life!



--- On Tue, 11/10/09, Sheri <sheri_moss0925@ yahoo.com> wrote:



From: Sheri <sheri_moss0925@ yahoo.com>

Subject: [Spina Bifida Central] Re: Hello Everyone

To: spinabifidacentral@ yahoogroups. com

Date: Tuesday, November 10, 2009, 8:52 AM



 



Boy, this sure has created a big mess, hasn't it.



Sheri, mom to Dillan, T-10



--- In spinabifidacentral@ yahoogroups. com, LightningGrl2121@ ... wrote:

>

> It doesn't matter. She is a college student. Give the girl a break. She is

> trying to educate herself. You don't have to be rude about it.

>

> Summer

>

>

> In a message dated 11/9/2009 6:10:34 P.M. Eastern Standard Time,

> coffteawoman4christ @... writes:

>

>

>

>

> Anyone should know that a birth defect is not a disease.

>

> ____________ _________ _________ __

> From: Sheri <_sheri_moss0925@ sheri_mos_ (mailto:sheri_ moss0925@ ...) >

> To: _spinabifidacentral @spinabifidacspi _

> (mailto:spinabifida central@ yahoogroups. com)

> Sent: Mon, November 9, 2009 4:36:50 PM

> Subject: [Spina Bifida Central] Re: Hello Everyone

>

>

> Come on Guys, give the student a break! I'm sure she didn't mean any harm

> by calling the Spina Bifida "Defect", a Disease. A lot of people are

> ignorant as to what the Neuro Defect actually is, much less than calling it
this.

> Even though it is the number 1 defect in our nation, there is very little

> publicity about is as there is about Autism, CP, MS, etc. The comment kind

> of rubbed me the wrong way too, but please consider the source.

>

> Sheri, mom to Dillan, T-10.

>

> --- In spinabifidacentral@ yahoogroups. com, Sara Schneider

> <coffteawoman4chris t@...> wrote:

> >

> > Oh my gosh... a DISEASE??? Reading your email literally made me

> physically ill... Just check out www..sbaa.org.

> >

> > From: spinabifidacentral@ yahoogroups. com

> > [mailto:spinabifida central@ yahoogroups. com] On Behalf Of Amanda

> > Sent: Thursday, 29 October 2009 1:23 AM

> > To: spinabifidacentral@ yahoogroups. com

> > Subject: [Spina Bifida Central] Hello Everyone

> >

> > I am a student at Bryant & Stratton college and i am doing a research

> > project. I would like to know if there were any good books, magazines, or

> > websites in the cleveland area that would be helpful in fully

> understanding

> > what spina bifida is. I have had family members with this disease so i

> would

> > like to know more information. thank you

> >

> > [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]

>



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






























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

Yes it has!  Judge not less yee be judged!  May have been a mistake or
misinformation but in  my opinion, it was obviously well intended!  Why make a
mountain out of a mole hill!  Politely redirect to the proper terminology and
move on with life!

--- On Tue, 11/10/09, Sheri <sheri_moss0925@...> wrote:


From: Sheri <sheri_moss0925@...>
Subject: [Spina Bifida Central] Re: Hello Everyone
To: spinabifidacentral@yahoogroups.com
Date: Tuesday, November 10, 2009, 8:52 AM


 



Boy, this sure has created a big mess, hasn't it.

Sheri, mom to Dillan, T-10

--- In spinabifidacentral@ yahoogroups. com, LightningGrl2121@ ... wrote:
>
> It doesn't matter. She is a college student. Give the girl a break. She is
> trying to educate herself. You don't have to be rude about it.
>
> Summer
>
>
> In a message dated 11/9/2009 6:10:34 P.M. Eastern Standard Time,
> coffteawoman4christ @... writes:
>
>
>
>
> Anyone should know that a birth defect is not a disease.
>
> ____________ _________ _________ __
> From: Sheri <_sheri_moss0925@ sheri_mos_ (mailto:sheri_ moss0925@ ...) >
> To: _spinabifidacentral @spinabifidacspi _
> (mailto:spinabifidacentral@ yahoogroups. com)
> Sent: Mon, November 9, 2009 4:36:50 PM
> Subject: [Spina Bifida Central] Re: Hello Everyone
>
>
> Come on Guys, give the student a break! I'm sure she didn't mean any harm
> by calling the Spina Bifida "Defect", a Disease. A lot of people are
> ignorant as to what the Neuro Defect actually is, much less than calling it
this.
> Even though it is the number 1 defect in our nation, there is very little
> publicity about is as there is about Autism, CP, MS, etc. The comment kind
> of rubbed me the wrong way too, but please consider the source.
>
> Sheri, mom to Dillan, T-10.
>
> --- In spinabifidacentral@ yahoogroups. com, Sara Schneider
> <coffteawoman4chris t@...> wrote:
> >
> > Oh my gosh... a DISEASE??? Reading your email literally made me
> physically ill... Just check out www..sbaa.org.
> >
> > From: spinabifidacentral@ yahoogroups. com
> > [mailto:spinabifida central@ yahoogroups. com] On Behalf Of Amanda
> > Sent: Thursday, 29 October 2009 1:23 AM
> > To: spinabifidacentral@ yahoogroups. com
> > Subject: [Spina Bifida Central] Hello Everyone
> >
> > I am a student at Bryant & Stratton college and i am doing a research
> > project. I would like to know if there were any good books, magazines, or
> > websites in the cleveland area that would be helpful in fully
> understanding
> > what spina bifida is. I have had family members with this disease so i
> would
> > like to know more information. thank you
> >
> > [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]
>








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

Boy, this sure has created a big mess, hasn't it.

Sheri, mom to Dillan, T-10

--- In spinabifidacentral@yahoogroups.com, LightningGrl2121@... wrote:
>
> It doesn't matter. She is a college student. Give the girl a break. She is
> trying to educate herself. You don't have to be rude about it.
>
> Summer
>
>
> In a message dated 11/9/2009 6:10:34 P.M. Eastern Standard Time,
> coffteawoman4christ@... writes:
>
>
>
>
> Anyone should know that a birth defect is not a  disease.
>
> ________________________________
> From: Sheri  <_sheri_moss0925@sheri_mos_ (mailto:sheri_moss0925@...) >
> To:  _spinabifidacentral@spinabifidacspi_
> (mailto:spinabifidacentral@yahoogroups.com)
> Sent:  Mon, November 9, 2009 4:36:50 PM
> Subject: [Spina Bifida Central] Re: Hello  Everyone
>
>
> Come on Guys, give the student a break! I'm sure  she didn't mean any harm
> by calling the Spina Bifida "Defect", a Disease. A  lot of people are
> ignorant as to what the Neuro Defect actually is, much less  than calling it
this.
> Even though it is the number 1 defect in our nation,  there is very little
> publicity about is as there is about Autism, CP, MS, etc.  The comment kind
> of rubbed me the wrong way too, but please consider the  source.
>
> Sheri, mom to Dillan, T-10.
>
> --- In spinabifidacentral@  yahoogroups. com, Sara Schneider
> <coffteawoman4chris t@...>  wrote:
> >
> > Oh my gosh... a DISEASE??? Reading your email literally  made me
> physically ill... Just check out www..sbaa.org.
> >
> > From:  spinabifidacentral@ yahoogroups. com
> > [mailto:spinabifida central@  yahoogroups. com] On Behalf Of Amanda
> > Sent: Thursday, 29 October 2009  1:23 AM
> > To: spinabifidacentral@ yahoogroups. com
> > Subject:  [Spina Bifida Central] Hello Everyone
> >
> > I am a student at  Bryant & Stratton college and i am doing a research
> > project. I  would like to know if there were any good books, magazines, or
> >  websites in the cleveland area that would be helpful in fully
> understanding
> > what spina bifida is. I have had family members with  this disease so i
> would
> > like to know more information. thank  you
> >
> > [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]
>

I know a lot of people that say it that way. Doesn't mean they should be
treated like they are bad and stupid.

Summer


In a message dated 11/9/2009 6:18:57 P.M. Eastern Standard Time,
coffteawoman4christ@... writes:




I've yet to meet a person (especially one w/ SB in the family!) that thinks
  any birth defect is a disease. It might be different if she knew no one w/
SB,  but she does.

________________________________
From:  "_LightningGrl2121@Lightni_ (mailto:LightningGrl2121@...) "
<_LightningGrl2121@Lightni_ (mailto:LightningGrl2121@...) >
To:  _spinabifidacentral@spinabifidacspi_
(mailto:spinabifidacentral@yahoogroups.com)
Sent:  Mon, November 9, 2009 5:15:01 PM
Subject: Re: [Spina Bifida Central] Re:  Hello Everyone


It doesn't matter. She is a college student.  Give the girl a break. She is
trying to educate herself. You don't have to  be rude about it.

Summer

In a message dated 11/9/2009 6:10:34  P.M. Eastern Standard Time,
coffteawoman4christ @yahoo.com  writes:

Anyone should know that a birth defect is not a  disease.

____________ _________ _________ __
From: Sheri  <_sheri_moss0925@ sheri_mos_ (mailto:sheri__sheri_moss0925@
sheri_mo>
To: _spinabifidacentral @spinabifidacspi _
(mailto:spinabifida(mailto:spinabifida<WBR>cen
Sent: Mon, November  9, 2009 4:36:50 PM
Subject: [Spina Bifida Central] Re: Hello  Everyone

Come on Guys, give the student a break! I'm sure she didn't  mean any harm
by calling the Spina Bifida "Defect", a Disease. A lot of  people are
ignorant as to what the Neuro Defect actually is, much less  than calling
it this.
Even though it is the number 1 defect in our nation,  there is very little
publicity about is as there is about Autism, CP, MS,  etc. The comment kind
of rubbed me the wrong way too, but please consider  the source.

Sheri, mom to Dillan, T-10.

--- In  spinabifidacentral@ yahoogroups. com, Sara Schneider
<coffteawoman4chris t@....> wrote:
>
> Oh my gosh... a  DISEASE??? Reading your email literally made me
physically ill... Just  check out www..sbaa.org.
>
> From: spinabifidacentral@  yahoogroups. com
> [mailto:spinabifida central@ yahoogroups. com] On  Behalf Of Amanda
> Sent: Thursday, 29 October 2009 1:23 AM
> To:  spinabifidacentral@ yahoogroups. com
> Subject: [Spina Bifida Central]  Hello Everyone
>
> I am a student at Bryant & Stratton  college and i am doing a research
> project. I would like to know if  there were any good books, magazines, or
> websites in the cleveland  area that would be helpful in fully
understanding
> what spina  bifida is. I have had family members with this disease so i
would
>  like to know more information. thank you
>
> [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]

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







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