Hello Betsy
 
Welcome.
 
My name is Sarah and i am 25.  I was born with Scoliosis and Spina Bifida
Occulta.






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

Well I am in calif norcal that is  where are u from and u may add me to yahoo
messnger if u want ok,my gf is the one with spina bifida,




________________________________
From: skihotrod81 <skihotrod81@...>
To: spinabifidacentral@yahoogroups.com
Sent: Sun, November 15, 2009 7:07:30 PM
Subject: [Spina Bifida Central] introduction

 
Hello,

My name is Betsy. I am 28 years old and born with spina bifida. I am involved in
many sports such as alpine skiing, and wheelchair soccer (handball). I would
like to meet other people and families.







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

Hello,

My name is Betsy.  I am 28 years old and born with spina bifida.  I am involved
in many sports such as alpine skiing, and wheelchair soccer (handball).  I would
like to meet other people and families.

Then you should ask.




________________________________
From: mike s <handsome_loving_kind@...>
To: spinabifidacentral@yahoogroups.com
Sent: Sat, November 14, 2009 6:25:40 AM
Subject: Re: [Spina Bifida Central] H1N1

 
i have sb and am in a wheelchair and my doctor didnt mention that i should get
one

--- On Fri, 11/13/09, Sara Schneider <coffteawoman4christ @yahoo.com> wrote:

From: Sara Schneider <coffteawoman4christ @yahoo.com>
Subject: [Spina Bifida Central] H1N1
To: "AC4SB group" <ADULTSCENTRALFORSPI NABIFIDA@ yahoogroups. com>, "Adults w/
SB group" <AdultswithSpinaBifi da@yahoogroups. com>, "AFW/SB group"
<adult_females_ with_spina_ bifida@yahoogrou ps.com>, "bifidachatgroup"
<bifida-chat@ yahoogroups. com>, "bifida-l" <bifida-l@yahoogroup s.com>,
"collegestudentsw/ sbgroup" <COLLEGESTUDENTSWITH SB@yahoogroups. com>,
"int'lSBsupportcent ergroup" <InternationalSpinaB ifidaSupportCent
er@yahoogroups. com>, "Livingw/spinabifid agroup" <Livingwithspinabifi
da@yahoogroups. com>, "peoplew/sbgroup" <peoplewithsb@ yahoogroups. com>,
"SBcommunitygroup" <spinabifidacommunit y@yahoogroups. com>, "seattleSBgroup"
<SeattleSpinaBifida@ yahoogroups. com>, "Spinabifidacentral "
<spinabifidacentral@ yahoogroups. com>
Date: Friday, November 13, 2009, 10:33 PM

 

Are those w/ SB (specifically those wheelchair bound and with scoliosis,
kyphosis, and lordosis) one the priority list to get the H1N1 shot? I haven't
found a place to get one if you're not on that list.

In Christ,
Sara
24/F/WI

[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 sb and am in a wheelchair and my doctor didnt mention that i should get
one

--- On Fri, 11/13/09, Sara Schneider <coffteawoman4christ@...> wrote:


From: Sara Schneider <coffteawoman4christ@...>
Subject: [Spina Bifida Central] H1N1
To: "AC4SB group" <ADULTSCENTRALFORSPINABIFIDA@yahoogroups.com>, "Adults w/ SB
group" <AdultswithSpinaBifida@yahoogroups.com>, "AFW/SB group"
<adult_females_with_spina_bifida@yahoogroups.com>, "bifidachatgroup"
<bifida-chat@yahoogroups.com>, "bifida-l" <bifida-l@yahoogroups.com>,
"collegestudentsw/sbgroup" <COLLEGESTUDENTSWITHSB@yahoogroups.com>,
"int'lSBsupportcentergroup"
<InternationalSpinaBifidaSupportCenter@yahoogroups.com>,
"Livingw/spinabifidagroup" <Livingwithspinabifida@yahoogroups.com>,
"peoplew/sbgroup" <peoplewithsb@yahoogroups.com>, "SBcommunitygroup"
<spinabifidacommunity@yahoogroups.com>, "seattleSBgroup"
<SeattleSpinaBifida@yahoogroups.com>, "Spinabifidacentral"
<spinabifidacentral@yahoogroups.com>
Date: Friday, November 13, 2009, 10:33 PM


 



Are those w/ SB (specifically those wheelchair bound and with scoliosis,
kyphosis, and lordosis) one the priority list to get the H1N1 shot? I haven't
found a place to get one if you're not on that list.

In Christ,
Sara
24/F/WI

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











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

Are those w/ SB (specifically those wheelchair bound and with scoliosis,
kyphosis, and lordosis) one the priority list to get the H1N1 shot? I haven't
found a place to get one if you're not on that list.

In Christ,
Sara
24/F/WI




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

Well on things like that my gf  insurance pays for them, I am more interested
in getting her an electric wheel for which I have had no luck and I don't  know
what to domany ideas




________________________________
From: Brittany Gibson <bgibson81107@...>
To: spinabifidacentral@yahoogroups.com
Sent: Fri, November 13, 2009 6:28:14 AM
Subject: [Spina Bifida Central] Extra Caths

 


We are fortunate enough that we are able to receive  a large supply of caths
every month.
 
We have an overflow right now of 8Fr and Insertion kits. I MEAN AN OVER
FLOW.... 
 
My daughter gets them from two different companies and I want to help others
out. If you are interested please let me know.
 
We live in the states, I am not sure what shipping is outside of the states but
if you are interested I am sure we could work something out with Pay Pal or
such.
 
Thanks,
Brittany (wife to Jacob, mom to Brence 3, Brooklyn 11mths, SB L2-L5, Hydro VP
Shunt, Bilateral Clubbed Feet AFO's!!

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







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

Hi Brittany,
We are interested in your catheters.  We are in a bind right now with insurance
not wanting to pay for them.  The company we get them from is over $2500.00 per
month for 2 caths per day.  May I ask what type cath you have?  Are they
hydrofil or dry caths?  Feel free to email me personally at
heatherkane1@... .  We live in Texas.  Thanks



________________________________
From: Brittany Gibson <bgibson81107@...>
To: spinabifidacentral@yahoogroups.com
Sent: Fri, November 13, 2009 8:28:14 AM
Subject: [Spina Bifida Central] Extra Caths




We are fortunate enough that we are able to receive  a large supply of caths
every month.

We have an overflow right now of 8Fr and Insertion kits. I MEAN AN OVER FLOW....

My daughter gets them from two different companies and I want to help others
out. If you are interested please let me know.

We live in the states, I am not sure what shipping is outside of the states but
if you are interested I am sure we could work something out with Pay Pal or
such.

Thanks,
Brittany (wife to Jacob, mom to Brence 3, Brooklyn 11mths, SB L2-L5, Hydro VP
Shunt, Bilateral Clubbed Feet AFO's!!

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







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

We are fortunate enough that we are able to receive  a large supply of caths
every month.
 
We have an overflow right now of 8Fr and Insertion kits. I MEAN AN OVER
FLOW.... 
 
My daughter gets them from two different companies and I want to help others
out. If you are interested please let me know.
 
We live in the states, I am not sure what shipping is outside of the states but
if you are interested I am sure we could work something out with Pay Pal or
such.
 
Thanks,
Brittany (wife to Jacob, mom to Brence 3, Brooklyn 11mths, SB L2-L5, Hydro VP
Shunt, Bilateral Clubbed Feet AFO's!!




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

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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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]