My son who just turned 8 has the same problem. We get him water shoes. Usually
we find them at Walmarts, Toys R Us and Sports Authority.

--- On Wed, 6/10/09, casteel54 <casteel54@...> wrote:


From: casteel54 <casteel54@...>
Subject: [SBAofNC] Pool shoes
To: sbaofnc@yahoogroups.com
Date: Wednesday, June 10, 2009, 5:03 PM








Hello, My daughter is 4 and we went to the pool the other day and she was in the
kiddy pool, She Has no feeling in her feet and she was moving around the pool
and when we got her out her feet were tore up she has sores and scrapes all over
them. We have been looking for pool shoes all over we have been to wall mart,
cvs, wallgreens, and cant find any shoes for her to wear in the pool. Does
anyone have any suggestions on what kind to get and where to get them?

Kim casteel mom of dylan 9 and brittney 4 spina bifida L4 shunt 18 surgerys,
paralized from the knees down.



















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

I know they may be expensive but have you looked into LLBean or Lands End?
Also check with Sears, JC Penney's or any other department store is in your
area.



I wear pool shoes when I go swimming only cause I don't have feeling either
and my feet can get torn up pretty bad too.



Hope this helps

Christine (Forest City, NC)



From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
casteel54
Sent: Wednesday, June 10, 2009 5:04 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Pool shoes








Hello, My daughter is 4 and we went to the pool the other day and she was in
the kiddy pool, She Has no feeling in her feet and she was moving around the
pool and when we got her out her feet were tore up she has sores and scrapes
all over them. We have been looking for pool shoes all over we have been to
wall mart, cvs, wallgreens, and cant find any shoes for her to wear in the
pool. Does anyone have any suggestions on what kind to get and where to get
them?

Kim casteel mom of dylan 9 and brittney 4 spina bifida L4 shunt 18 surgerys,
paralized from the knees down.





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

Hello, My daughter is 4 and we went to the pool the other day and she was in the
kiddy pool, She Has no feeling in her feet and she was moving around the pool
and when we got her out her feet were tore up she has sores and scrapes all over
them. We have been looking for pool shoes all over we have been to wall mart,
cvs, wallgreens, and cant find any shoes for her to wear in the pool. Does
anyone have any suggestions on what kind to get and where to get them?

Kim casteel mom of dylan 9 and brittney 4 spina bifida L4 shunt 18 surgerys,
paralized from the knees down.

I don't post much but this one peaked my interested so I wanted to try and
help.



I am not sure if she can take Colace? That is another stool softner.
Something I take. But yes I am an adult with SB. Not sure if a 4 yr old
could swallow a pill either, they may make liquid form, something to check
out.



Christine



From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
casteel54
Sent: Tuesday, May 05, 2009 10:12 AM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Myrlax








Hello everyone, I was wondering i anyone can help me. My daughter takes
myrlax everyday if she doesnt take it she gets really constipated and has a
lot of pain if she cant go. Well medicade has stoped paying for myrlax as of
april and we cant afford it. I have called her gastroentolist and they have
no suggestions. Does anyone have any suggestions on how to kep her from not
getting constipated she is only 4 and i dont know what will hurt her little
system and what wont. thanks.....kim

Mom of dylan 8 and brittney 4 sb level 4, shunt 10 revisions, mace, bladder
augmentation foot surgery leg surgery, 3 deteathering of the spine surgerys.





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

Hello everyone, I was wondering i anyone can help me. My daughter takes myrlax
everyday if she doesnt take it she gets really constipated and has a lot of pain
if she cant go. Well medicade has stoped paying for myrlax as of april and we
cant afford it. I have called her gastroentolist and they have no suggestions.
Does anyone have any suggestions on how to kep her from not getting constipated
she is only 4 and i dont know what will hurt her little system and what wont.
thanks.....kim


Mom of dylan 8 and brittney 4 sb level 4, shunt 10 revisions, mace, bladder
augmentation foot surgery leg surgery, 3 deteathering of the spine surgerys.

NATIONAL SURVEY OF THE SPINA BIFIDA COMMUNITY
http://www.jredwards.com/sba.asp

The National Survey of the Spina Bifida Community, a national survey of adults
and families living with Spina Bifida and the health care providers who touch
their lives, is online now.  This is the last week that the survey will be
available, so please take a few minutes to take this survey for the Spina Bifida
Association. The survey will help us develop programs for you. All responses
will remain confidential.

Thank you!

Adriane

Adriane K. Griffen, MPH, CHES
Director of Health Promotion and Partnerships
Spina Bifida Association
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
800-621-3141 ext. 13
202-944-3285 ext. 13
FAX 202-944-3295
agriffen@...
www.spinabifidaassociation.org

SBA’s 36th National Conference: Imagine the Possibilities
June 30 – July 3, 2009
Orlando, Florida
Register today at http://conference.spinabifidaassociation.org!

NATIONAL SURVEY OF THE SPINA BIFIDA COMMUNITY
http://www.jredwards.com/sba.asp
The National Survey of the Spina Bifida Community, a national survey of adults
and families living with Spina Bifida and the health care providers who touch
their lives, is now online at http://www.jredwards.com/sba.asp. Please take a
few minutes to take this survey for the Spina Bifida Association. The survey
will help us develop programs for you. All responses will remain confidential.
Thank you!


Adriane K. Griffen, MPH, CHES
Director of Health Promotion and Partnerships
Spina Bifida Association
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
800-621-3141 ext. 13
202-944-3285 ext. 13
FAX 202-944-3295
agriffen@...
www.spinabifidaassociation.org

Hey
It may take several weeks to get cleaned out and regulated.
 
Good Luck
Brandon
 
PS-you are never on messenger anymore, did you block me?

--- On Tue, 12/16/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] mace!
To: sbaofnc@yahoogroups.com
Date: Tuesday, December 16, 2008, 4:25 PM






hello, my daughter brittney has a mace and we have to flush it with
260cc's of warm water and then she has a bowel movement, the goal is
for her to not have accedents and wear big girl panties but she is
still haveing accedents and i dont know why. any suggestions?


















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

Kim,
 
I'm not sure how often you are flushing for her to have a bowel movement, but we
have been successful with every 2 - 3 days for our daughter. Each time you do
the bowel program, it's important that she sit long enough for everything to
come out. That's at least 30 minutes for us. Once in awhile we might have a
stray accident. You might try doing the program every day or every other day and
making sure she pushes everything out and sits long enough for it to work
through. Good luck! -- Mike





 

Michael H. Gates
7O4-488-3O4O
PO Box 28O5,
Indian Trail, NC 28O79
Blog - Pondering @ the Pond

 
"Like the coolness of snow at harvest time is a trustworthy messenger
to those who send him;  he refreshes the spirit of his masters." -- Proverbs
25:13

--- On Tue, 12/16/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] mace!
To: sbaofnc@yahoogroups.com
Date: Tuesday, December 16, 2008, 4:25 PM






hello, my daughter brittney has a mace and we have to flush it with
260cc's of warm water and then she has a bowel movement, the goal is
for her to not have accedents and wear big girl panties but she is
still haveing accedents and i dont know why. any suggestions?


















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

hello, my daughter brittney has a mace and we have to flush it with
260cc's of warm water and then she has a bowel movement, the goal is
for her to not have accedents and wear big girl panties but she is
still haveing accedents and i dont know why. any suggestions?

Hang in there!  There are little nuances to this Mit cathing.  When
you cath her try different angles.  Try her at different angels.
Sometimes I have to lower the back of his wheelchair a little to get a
good angle.  If you get frustrated, take a break.  Also try cathing
her after her she has been cathed.  Sometimes a full bladder puts the
  conduit at a different angle.  Do you remember what the angle of what
her folley cath was?  Often times you need to follow that.

I hope this helps.

Put Brittney laying down on her back and try that. We've been able to get it to
work for Breanna that way when nothing else will. Also, sometimes we've angled
it slightly from the side and down left or right depending on how the stoma is
angled while pushing gently on the opposite side of her belly. Cathing from
below is okay. Don't hesitate to take her to the doctor if you have trouble.
Mike




 
Michael H. Gates
Gates Consulting, LLC
Freelance Writing & English Tutoring
704-488-3040
PO Box 2805,
Indian Trail, NC 28079
mhgates@...
Blog - Pondering @ the Pond

 
"Like the coolness of snow at harvest time is a trustworthy messenger
to those who send him;  he refreshes the spirit of his masters." -- Proverbs
25:13

--- On Sat, 12/6/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] bladder augmentation
To: sbaofnc@yahoogroups.com
Date: Saturday, December 6, 2008, 2:47 PM






hello, i am having a heck of a time here. my daughter brittney just had
her surgery in october and just got all her tubes out of her belly. i
have to cath her through the belly button and i have been doing it for
2 days i tried it on thursday and couldnt do it so we had to drive all
the way back to dr. then i got the hang of it. well today i did it this
morning and cant seem to get the cath in anymore i tried three times i
am making the sight bleed a little can any one help me i am cathing her
from below so the urin is getting out of the baldder just not the way
its supposed to.


















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

hello, i am having a heck of a time here. my daughter brittney just had
her surgery in october and just got all her tubes out of her belly. i
have to cath her through the belly button and i have been doing it for
2 days i tried it on thursday and couldnt do it so we had to drive all
the way back to dr. then i got the hang of it. well today i did it this
morning and cant seem to get the cath in anymore i tried three times i
am making the sight bleed a little can any one help me i am cathing her
from below so the urin is getting out of the baldder just not the way
its supposed to.

hello, just letting everyone know brittney is still in hospital she has
been here 21 days now. she is very sick but dr thinks she is getting
better everyday. thank you to all that sent well wishes we love getting
your messages. love...kim casteel

Hi, Kim!
 
My daughter Breanna had to have an NG (nasogastric) feeding tube through her
nose for awhile to eat after she had her bladder augmentation and MACE/Malone.
She hated that and still remembers it. She's doing fine since she had the
surgery about 9 years ago though.  We are praying for you and Brittney.
 
My Dad has been in Presbyterian Hospital in Charlotte for 2 1/2 months. He
recently moved next door to the CMC Rehab at Mercy Hospital. Breanna, my son
Jonathan and I are on the way to see him now. We will be praying for Brittney
and you.
 
Please call if you would like to talk.
 
Mike and Kim Gates

Michael H. Gates



704-488-3040
3915 Grace Court, Indian Trail, NC 28079

--- On Sun, 11/2/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] another update on brittney
To: sbaofnc@yahoogroups.com
Date: Sunday, November 2, 2008, 2:38 PM






hey everyone just wanted to tell you brittney is still in hospital we
have been here 18 days. she is very sick she has had to have a blood
transfusion and now they have a feeding tube in her. i cant talk to u
all because yahoo doesnt work in the hospital so this is how i will
comunicate with u on her progress. love to all and i read all the
messages u send to us love...kim and brittney


















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

i hope she gets better soon!

--- On Sun, 11/2/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] another update on brittney
To: sbaofnc@yahoogroups.com
Date: Sunday, November 2, 2008, 2:38 PM






hey everyone just wanted to tell you brittney is still in hospital we
have been here 18 days. she is very sick she has had to have a blood
transfusion and now they have a feeding tube in her. i cant talk to u
all because yahoo doesnt work in the hospital so this is how i will
comunicate with u on her progress. love to all and i read all the
messages u send to us love...kim and brittney


















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

hey everyone just wanted to tell you brittney is still in hospital we
have been here 18 days. she is very sick she has had to have a blood
transfusion and now they have a feeding tube in her. i cant talk to u
all because yahoo doesnt work in the hospital so this is how i will
comunicate with u on her progress. love to all and i read all the
messages u send to us love...kim and brittney

I am so sorry to hear about Brittney Kim, my prayers and thoughts are
with you and your family.

Manisha Jha

> --- On Thu, 10/30/08, casteel54 <casteel54@...> wrote:
>
> From: casteel54 <casteel54@...>
> Subject: [SBAofNC] update on brittney
> To: sbaofnc@yahoogroups.com
> Date: Thursday, October 30, 2008, 2:10 PM
>
>
>
>
>
>
> hey everyone, brittney is still in the hospital and is very sick
please
> everyone say a prayer for her.
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Your family is in my thoughts and prayers.  I've wondered what has
happened to you online.  I hope Brittney makes a full recovery.  I
wish my parents and I could come visit the hospital, but we're scared
of uptown Charlotte. :-(

God be with you,

Eric


--- In sbaofnc@yahoogroups.com, "casteel54" <casteel54@...> wrote:
>
> hey everyone, brittney is still in the hospital and is very sick please
> everyone say a prayer for her.
>

i am so sorry to hear that kim. i will definitely keep her in my thoughts and
prayers.
 
Samantha

--- On Thu, 10/30/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] update on brittney
To: sbaofnc@yahoogroups.com
Date: Thursday, October 30, 2008, 2:10 PM






hey everyone, brittney is still in the hospital and is very sick please
everyone say a prayer for her.


















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

Our prayers are with you all.

--- On Thu, 10/30/08, casteel54 <casteel54@...> wrote:

From: casteel54 <casteel54@...>
Subject: [SBAofNC] update on brittney
To: sbaofnc@yahoogroups.com
Date: Thursday, October 30, 2008, 2:10 PM






hey everyone, brittney is still in the hospital and is very sick please
everyone say a prayer for her.


















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

hey everyone, brittney is still in the hospital and is very sick please
everyone say a prayer for her.

My son's biggest issue before his decompression was gagging when he
ate.  He now has a significantly reduced gagging problem.  When the
decompression was done, the surgeon said there was a lot of scar
tissue from all the rubbing.  My son recovered quickly - as he does
from all of his surgeries.

Dear Friends,

My daughter Emily has a Chiari Malformation II. When she was 1 month
old the neurosurgeon wants to do a Cranial Decompression on her. We
didn't let him do it. When she was 4 yrs. old this neurosurgeon did
another MRI to Emily and he said that there is no change since she was
1 month old and he didn't suggest any decompression. Anyway, now that
Emily is 5 years old, our nurse that takes care of her thinks that may
be the chiari is the one that makes her fall sometimes, etc. Please
tell me more about chiari malformation's symptoms and effect to our
kids with SB. I don't want to make a decision that will not help my
child. She is walking without help, she doesn't have a shunt, she is in
Kindergarten, and she is a very happy child. Please...help me to know
more about this defect.

Thanks!
Cynthia

--- In sbaofnc@yahoogroups.com, Rajurs <no_reply@...> wrote:
>hi manisha i am 37 and i have spinal bifida and i have had two kids
one has spina bifida if u like u can im me and we can talk.
> Hi I am a 32 year old women with spina bifida.  I wanted to talk to
> other women with a history of spina bifida who are pregnant or have
> gone through pregnancy.  We are trying to get pregnant and I wanted
to
> find out what experiences you have had with pregnancy.  I would
> appreciate your assistance this this matter.  Thanks.  Manisha
>

Hi I am a 32 year old women with spina bifida.  I wanted to talk to
other women with a history of spina bifida who are pregnant or have
gone through pregnancy.  We are trying to get pregnant and I wanted to
find out what experiences you have had with pregnancy.  I would
appreciate your assistance this this matter.  Thanks.  Manisha

Yes they do.   The number to the SB clinic scheduling person ( her name is
Christine) is 919-966-8813  I am sure she could answer any questions you may
have.





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]

hi kim, where are you from nc? I have a 5 yr. old daughter with spina bifida.
May be we can meet.
 
Cynthia

--- On Wed, 10/8/08, kim casteel <casteel54@...> wrote:

From: kim casteel <casteel54@...>
Subject: [SBAofNC] hello
To: sbaofnc@yahoogroups.com
Date: Wednesday, October 8, 2008, 4:22 PM






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]

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]