update on Erin

2007-05-31 22:39:10

Hi everone,
First I'd like to thank everyone for there support. My husband had
wrote telling you all about our unborn child Erin who has SB. We did
find out it is an L2 so there is a good chance that she will walk.
She is doing really good. She is over 10inches long and is a very
strong kicker. I'm 6 months along, so only another 3 and 1/2 more to
go. The doctors said I have to have a C-section at 39 weeks so the
due date has changed to the last week in August. Also we did confurm
that it was the Depakote that made her have SB. Thanks again for your
support. Denise,John and Erin

HAPPY BIRTHDAY, ANNA!

2007-05-31 21:20:10

This is for my daughter, Anna, who is 9 today! You are the greatest
joy to all who know you!
Much love,
Mom, Dad & Ethan
(Anna is L3-4 myelo, vp shunt, seizures, nvld)

Re: [Livingwithspinabifida] hello there

2007-05-31 10:31:39

Dang! I was going to say welcome, but I'm a male. OH well, Welcome anyway. : )

Chip

47, male, lipomeningocele, married with two children, one cat and two dogs.

Re: [Livingwithspinabifida] Special occassion dresses 4 sale

2007-05-31 05:13:31

I like Pink, but I think the neighbors would talk.

Chip

Re: [Livingwithspinabifida] Aaron

2007-05-30 22:51:59

Tui,

I do have a large fenced in area so my beagles can get some much needed exercises. I can't get out and walk them everyday like I use to b/c of my condition. So this area is invaluable to me. In fact, my neighbors helped me to put it up. One neighbor brought over his gas powered hole digger to make the holes for the posts. A couple of others held the posts in the holes while we lined them up with a level to make sure they were perfectly vertical. I had another neighbor come over with his "come a long", a kind of chain mechanism that when you attach it to my tractor it pulls the fence tight so the fence doesn't become loose. In other words, it was a neighborhood project. Here's a pic of it as it looks last week.
[INLINE]
That's Mozart with his front paws on the fence as he sees a squirrel. This is only one angle of what I call "Beagle Park".
The felt... You can leave marks and have the ugly sound or you can periodically change the felt on the bottom of your chairs. Your choice.
I've had the sleep testing before. That's where the doc found out I had reflex myoclonus. Nasty little seizures. Hope things turn out for the better for you.

Chip

hello there

2007-05-30 12:08:09

My name is Michael
Im 24 from Florida
I have Spina Bifida.
I have a picture of anyone who emails me back :)
I am looking for FEMALES ONLY with Spina Bifida of any leavel :)

Re: [Livingwithspinabifida] Brandon

2007-05-30 10:56:04

Welcome Amanda !!!
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Brandon

2007-05-30 04:31:34

Hey everyone,

I know that yall might not know me, this is the first time I have send an email to this site. I've gotten this computer not more than 2 mths ago, and instantly wanted to become a part of this.

My name is Amanda, and I have 2 beautiful sons, who are 3yrs old(ALEX) and 16 mths old(BRANDON). Brandon is the one who has spina bifida. He also has a vp shunt. He is extremely healthy right now,, and crawling very fast all over the house. He is at the stage where he and his brother, Alex, would fight over simple things. It was cute when he first did that, and now,, it's all the time, and I cant seem to stop them from screaming at each other. LOL...Alex accepts Brandon for who he is, and loves him to death. Alex is also helpful to him, knowing that he can't walk, so he helps him reach for things that he can't reach. It just amazes me that they get along so good.

Just wanted to introduce us. LOL... Well, I'm enjoying reading everyone else's emails thru this site, it may take me a little time to get to know everyone. Yall be sure to keep in touch.

Amanda

Special occassion dresses 4 sale

2007-05-29 18:25:20

Hi !
I have a couple of little girl dresses I am trying to sell, if anyone might
be interested, please email me and I will send you pictures.
I have a size 6 yellow & white tea length I am selling for $60. It was word 1
time for about an hour.
Also a pink & white size 7, also wore once for about an hour. I am also
asking $60 for it.
I have a size 4 pink & white dress only wore once for about an hour, I am
asking $60 for.
Another size 4 white dress, we bought it used, but it was in very good
condition, and we only wore it for about an hour. This one I am asking $40
for.
Plus the buyer would pay shipping charges. If your interested in seeing pics,
let me know !
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Aaron

2007-05-29 17:45:04

I didn't think these kind of neighbourhoods existed these days. That's wonderful that everyone is so helpful. Fences are kind of a necessity where we are. We are in a rural area, but right next to a main highway where traffic moves at the limit (100km/hr)++ most of the time. We've lost animals over the years due to them wandering on the road & so definitely couldn't take risks with children...
I have to say - your openness of the sections look quite inviting though - it would be a refreshing change. Have your relatives been back to visit after their encounter with your neighbours??? I hope your dog didn't get in on the act as well! Those kinds of dogs could be quite invaluable (as long as you don't get sued!). We have neighbours that have big 'beasty' dogs, only they aren't for protecting the owners, more like protecting the neighbours' illegal 'activities'...they don't call our area the 'green belt' for nothing! Now, I'm not suggesting that these activities take place in your neck of the woods - I doubt the plants would survive your winters!
Thanks for the suggestion re the felt, maybe I just need to get some thicker stuff, or maybe it needs to be replaced regularly, as it doesn't seem to be doing the job anymore.

We're battling urine infections again with Aaron. Have been for a couple of months now. What a pain! We just can't get rid of them. We've changed the antibiotics, even though the bugs were still sensitive to the other drugs - it was just that Aaron hated the taste of the liquid and for every dose of drug, we'd lose some food from gagging so much, and sometimes a dose of antibiotic that he gagged up! We tried mixing it with his food but he was pretty wily & knew. Anyway, the current one is going ok. Cross fingers, it will finally conquer this thing for awhile.

Did I mention his 2nd sleep study? A waste of time, as they tested him on the same amount of oxygen as he had been on when they discharged us - and at that stage he was sick with a chest infection. So you don't need to be a rocket scientist to work out that the results would be great on the same amount of oxygen - and he was. When I asked if they intended repeating the test on a lesser amount of oxygen the following night, they said no, we could do this at another hospital closer to home. Why did they ask us to go all that way to be told that? The trip is 4 hrs (one way) instead of 2 hrs to the other hospital they want us to go to. I was not impressed. We may as well have gone to the closer hospital in the first place. As well, they had put Aaron on a trial of Theophyllin (sp?) - a caffeine-based drug to (hopefully) stimulate the brain into breathing regularly during the night. Because they didn't do any further studies, they couldn't tell me whether it was the drug
which improved Aaron's breathing, or the fact that he simply was well. And to think this poor child took another drug, needlessly, 3 times per day (hating every minute of it) for nothing! I'll definitely get something more definitive (in writing), next time we are sent down for testing, or put on 'trial' drugs. I felt there may have been some lack of communication between staff & maybe this was the reason for the inconclusive results. I'm giving the staff the benefit of doubt here. They also refused to give me the results from his latest blood tests to do with growth hormones, telling me that my paediatrician will be in touch. Oh well, all I have to do, is write to clinical records & they will send me everything. That's how ridiculous the system is. Boy, they must hate persistent parents like me - and I'm sure there are heaps more persuasive people than me!

Tui

<a href="/group/Livingwithspinabifida/post?postID=eq6UwPLXv_jUx1_QExsNAQJJ6s4HWtnPpPOcTCIQi5gt2vY7R-SQpPx7K14R1lfSYX2q-c3nYTyqYU_8okQE">000000000@...</a>

2007-05-29 15:36:32

Has anyone heard of email coming from a 2 way device, and it is the same as
above in the subject line, only I have changed the numbers. If you are
familiar with this, please let me know.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: [Livingwithspinabifida] Chip: Your yard!

2007-05-29 07:13:30

Thanks. It's something I like to do.

Chip

Anna

2007-05-29 02:24:58

Hi everyone! Anna's birthday is coming up this Sat, May 12th. She
hardly ever gets e-mail so if anyone would like to send her a
birthday greeting please do so! She'll be 9! Here's her addy:
Anna8angel@...
Thanks!
Diane

Welcome Tina!!

2007-05-28 17:47:06

In a message dated 5/7/2001 3:21:47 PM Central Daylight Time,
amcc530733@... writes:

hello my name is tina

Welcome Tina!!!! I'm Brigette, 28, married 7.5 years and have two kids!!
Anastasia will be 4 in a few weeks and has L4/L5 SB. Brandon, her brother..
and play toy, is 15 months!! We live in Texas!! Welcome!

welcome Tina !

2007-05-28 12:04:28

Welcome Tina !!!
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: [Livingwithspinabifida] Going off

2007-05-28 08:44:12

In a message dated 5/7/2001 7:37:49 AM Central Daylight Time,
plaq.tow@... writes:

Well, that's it. Take care. I'll enjoy catching up when I return. Oh, and
sharing my own pictures of the newest member of our family.
Stacy

Good Luck Stacy!!!!
Brigette...
...
Proud Mom to Anastasia (L4-L5 SB) 3.5 and Brandon 14 months!
http://hometown.aol.com/brigetterad/myhomepage/family.html

Going off

2007-05-28 05:07:38

Well, I'll be going offline for a while. I have 3 weeks left til the baby
and I'm pooped. Not getting enough sleep, tossing and turning, etc. I may
be leaving work shortly and I don't want to bother my friend with a bunch of
email while I'm gone. I'll sign back on when I return. Til then good luck
everyone and have a good summer. I should be back mid-July, early August.
Oh yeah, I met with the counselor at Travis' school he will start in the
fall for kindergarten. We're starting to work on an IEP. Waiting on
doctors to send back the medical questionnaires. He'll be classified as
'other medical impaired' since he has no physical mobility problems. He
will be classified as special education so he has access to the nurse and an
aide if he needs one, but he will be in regular classes. He is ready to go
to the 'big school' and ride the school bus.
If anyone has any advice on an IEP, something to make sure that is done,
just email me direct at plaq.tow@... I may be here for about 2
more weeks, but I'm cleaning up stuff.
Well, that's it. Take care. I'll enjoy catching up when I return. Oh, and
sharing my own pictures of the newest member of our family.
Stacy

Chip: Your yard!

2007-05-27 23:31:43

What a beautiful, green, clean cut yard!!!!!!!!! Good job!! Brigette

Re: [Livingwithspinabifida] TUI

2007-05-27 12:32:06

Yes, a story with a happy ending.

Tui

75 yr old w/SB

2007-05-27 05:07:05

This message was on another list I belong to and thought it would be
interesting to let you all know of it:
I am pleased to let members of the list know that Bob McKellar, who
is 75 years old is interested in sharing his experiences as a spina
bifida patient with anyone who is interested ... directly with
individuals who contact him.
According to information received from Mr. McKellar, he retired from
Education in November 1990; taught English, social studies and career
education for 23 years and counselled for 17 years in 6 different
areas.
Contact information for Mr. McKellar is:
Bob McKellar
122 C St.
Davis, Ca. 95616
FAX 530 753 0604
Phone: 530 753 2746
RMcKellar@...

Re: [Livingwithspinabifida] How's it going ?

2007-05-27 04:14:51

Working on my many flower beds.

Chip

ps. Here is a nice close up of a Iris in my Paisley Park flower bed. I call this pic, "When Iris Eyes are Smiling."

[INLINE]

Re: How's it going ?

2007-05-26 12:19:24

Hi Dee Dee,
I will have to take it easy. I had minor surgery to fix cerebrospinal
fluid leaks. I had 5 of them. I have to be careful about bending and
heavy lifting for now. I also have re-tethered my spinal cord in 2
places. (T7 & T11). I am supposed to get the Baclofen pump in soon. I
will be listening to lots of music and also planning for some re-
mastering work for Universal Music. Thanks for asking!
Kent Teffeteller, PH.W! (Professor of life, tumbles, and wheelies)
The Fall Guy!
Spasticus Maximus! (Your wheelie philosopher and man of vision)

TUI

2007-05-26 09:44:04

Tui.......... You're story about *saving* the other baby was just
overwhelming. I just want to cry right now. Because of you this child is
with his natural parents........ and because of you...... the natural
mother will not have to go through life *wondering* about her baby.
Brigette...
...
Proud Mom to Anastasia (L4-L5 SB) 3.5 and Brandon 14 months!
http://hometown.aol.com/brigetterad/myhomepage/family.html

How's it going ?

2007-05-26 08:02:30

Any special plans this weekend ? I had some , but still not well enough so
will be staying home. :(
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: [Livingwithspinabifida] DD: Eric

2007-05-25 22:10:10

In a message dated 5/3/2001 12:10:42 AM Pacific Daylight Time,
Brigetterad@... writes:
<<
2 CUTE!! Brigette
Thank you !
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

PASSING ON ~~ MURDERED CHILD COMPOSITE READY PLEASE TAKE A L

2007-05-25 12:22:10

In a message dated 5/2/2001 9:37:22 PM Pacific Daylight Time,
mopagmom@... writes:
<<

Re: [Livingwithspinabifida] No voice ~

2007-05-25 09:01:50

Yes, but your hubby can't complain of a nagging wife. LOL ;-)

Tui

2007-05-25 01:07:15

Shoot. I should have read the rest of my e-mail before I read this one. You said it in a lot fewer words than I did Diane. It took me about a whole page to say what you did in a sentence. I'm losing my talents as a former band director, especially the principal part, for being able to say something short and sweet to get the point across. I think that's either age catching up to me, or I'm out of practice. LOL

Chip

No voice ~

2007-05-25 00:24:48

I have NO VOICE !! Can you imaged being a mom to 15 kids, and 2 grandbabies,
and not being able to talk ! This is making me crazy ! I think my chest
hurts worse because I am trying to talk, and nothing comes out. Then to top
it off, got mad about my 19 yr old, and couldnt even yell at him ! What
torcher !!!!
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: Tui

2007-05-24 15:23:25

Tui, As I've said before, KNOWLEDGE IS POWER! Never back down to
these doctors! Mom's (and dad's)know best when it comes to their kids!
Hang in there!
Diane

Re: [Livingwithspinabifida] SB Conference

2007-05-24 12:55:28

A great big pat on the old vertebrae to your church for their support and an even bigger pat on the vertebrae for sharing. That made my day Stacy!

Chip

SB Conference

2007-05-24 09:34:05

I just found out that a friend and coworker of mine will be helping during the SB conference in New Orleans. Her church is a big supporter locally and they will partly sponsoring the conference. I thought that was so neat I just had to share. Of course, I asked her to bring me back any information she could.

Stacy

Re: [Livingwithspinabifida] Eric

2007-05-23 21:21:06

Those photos are coming out great!
Tui

DD: Eric

2007-05-23 18:56:41

2 CUTE!! Brigette

PASSING ON ~ We need you help NOW if you live in or around ...

2007-05-23 08:35:24

Hi all we need your help if you live in the Midwest. Someone has found the
baby's body and her head. They need to find out who this child is. She is 4-6
years old 40 pounds. She is African American. She has a large birthmark on
her leg. She has been dead a few days only. The police are asking us all to
email and let as many people we know here about this for she may have been
kidnapped from another area or state. Please forward this email to any
friends you have in law enforcement or staes which surround Missouri. The
body was found in Kansas City, MO. No children in this area have been
reported missing. Please help and please pray for this little girl. I know
this is depressing but we need to stop these people. This is in my community,
my town, my state but it could be our child and any other place in these
United States. Someone is looking for this little girl, somebody needs to
know. This isn't one of those stupid hoax's, please help us find out whose
baby this is.
Lisa
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Eric

2007-05-23 06:05:47

In a message dated 5/1/2001 5:57:45 AM Pacific Daylight Time,
g.t.ussher@... writes:
<<
YOu can see him better in this one
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: [Livingwithspinabifida] Miracle cures

2007-05-23 05:24:25

Tui,

With that said, yes, we have a better system overall. Our problem in the US is there are so many that have NO medical care. You must have medical insurance (which is another story in itself with our HMO's and PPO's) to get care from most places. People don't atomatically get medical help here. Unless of course you are rich. In that case, you just pay in cash. Therefore, millions of people in the USA do not get medical attention other than what they do for themselves for what they can purchase at the local pharmacy, like band aides and such.
Had a friend this past fall that had his wife sew up up his arm with needle and thread b/c they don't have insurance and can't afford to go to a hospital or doctor's office. To take the sting out of the needle, he drank some beer.
My oldest son has no insurance and knock on wood, he hasn't had anything bad happen to him this year. Next year, he'll have medical insurance as he has been offered an elementary position that will pay him that benefit. When he got sick this past winter with a bad cold/flu, we had to pay out of pocket for his medical attention and that's expensive here.
My youngest son will be done with my medical insurance plan as soon as he graduates from school next December. That's one that will cause a person to go bankrupt real soon! He has had two open heart surgeries and has a pace maker. There is a company that calls long distance to check his pace maker over the phone once a month and that cost in the hundreds each month! Thank goodness the insurance pays for 80% of that. I just hope he gets a job that has good insurance or he'll be spending the rest of his life at home here b/c he'll be spending all his money on keeping himself alive. He also takes heart medication and that is really expensive.
However, having to split up families to get any medical help is really bad. I don't know what is the best way to get help to people. I think this has been a problem since man/woman has been on this earth and will take some time to figure out. I don't know the answers. I don't like your plan and I sure as heck don't like what we have here either.
Another problem that has plagued the USA for centuries is many medical institutions would not allow people access to medical help based on the color of their skin. Around the 60's and 70's, we began to see a big shift in thinking and now the color of a person's skin isn't as much a problem with getting medical help as it use to be. This is a major black mark or skeleton in the closet for all Americans.
What's the solution? Good topic of discussion!

Chip

Re: [Livingwithspinabifida] New &amp; Need Info.

2007-05-22 14:34:23

Suzy,
Welcome to the list. Is your friend online ? She would learn so much being on
this list. I have 2 children with SB. My son is 17 yrs old, and my daughter
is 7 yrs old. She is adopted. My kids are on opposite sides medically. I
would be more than happy to share my phone number if she would like to call
me. I have a 800# to.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

New &amp; Need Info.

2007-05-22 09:15:16

Recently, a good friend of mine learned that her unborn baby has Spina
Bifida. She asked me to look online for information about the condition.
I've found websites dedicated to Spina Bifida and learned the basics, but
after explaining to her what I've read, she really wants to know what life
may be like when her baby is born. She understands that every situation is
different, and her experience will be unique, but she is scared, worried and
quite overwhelmed. Any information, personal experience or advice anyone can
share will be greatly appreciated.
~× Suzy ×~

Re: Where do you live??

2007-05-22 07:50:19

Hi Dee Dee,
I live in Athens, TN. This is between Knoxville and Chattanooga in
East Tennessee.
Kent Teffeteller, PH.W! (Professor of life, tumbles, and wheelies!)
The Fall Guy!
Spasticus Maximus!

Re: Brian's Condition

2007-05-22 03:19:50

Thanks Tui, I'll check it out!
Izzy

Re: [Livingwithspinabifida] Aaron &amp; Dad

2007-05-21 21:48:59

In a message dated 4/29/2001 6:23:53 AM Central Daylight Time,
g.t.ussher@... writes:

had a play with a digital camera today and thought I'd send a pic of
Aaron & his dad. These are fun toys!

I don't know what happened... but It wouldn't come up for me!!
Brigette...
...
Proud Mom to Anastasia (L4-L5 SB) 3.5 and Brandon 14 months!
http://hometown.aol.com/brigetterad/myhomepage/family.html

Re: [Livingwithspinabifida] Brian's Condition

2007-05-21 17:32:48

Izzy
Here is another one:
http://www.asap4sm.com/

This site has heaps of stuff relating to spina bifida, including this topic.
http://www.mybookmarks.com/public/SB_Parents
Tui

Re: Aaron &amp; Dad

2007-05-21 07:05:08

Gorgeous, Tui ! What a doll......(dolls).
You're in New Zealand, aren't you? I'm in NFLD, as far east in Canada
as you can go before you reach London. It's 0900/29here.
I wish I knew enough about camera/computer to do the same thing but
no such luck.
Cheers,
Izzy

Aaron &amp; Dad

2007-05-21 03:25:05

I had a play with a digital camera today and thought I'd send a pic of
Aaron & his dad. These are fun toys!

Brian's Condition

2007-05-20 18:59:35

Hello everyone, it's great to read your postings of the last week or
more. I've been getting Brian(my son 9yo, SB L5S1,hydro) tested all
over the place to rule out the possible causes of the headaches,
nausea and loss of sensation I told you about some weeks ago. We've
had all the regular checks: ears, nose, throat, eyes, abdominal
xrays, spinal series x-rays, C-scan, Gastroenterologist(?),
neorosurgeon and we're now waiting for the MRI on Tuesday. Since the
C-Scan showed no change in the hyrdo, we are attempting to check on
the possibility of SYRINGOMYLIA....anyone know anything about this? I
found the following site and it sounds like a possibility:
http://www.ninds.nih.gov/health_and_medical/pubs/syringomyelia.htm
Hope all the kids are doing great at the moment.
Izzy

Re: [Livingwithspinabifida] Chip: Cheer UP!

2007-05-20 15:02:44

In a message dated 4/28/2001 7:59:28 AM Pacific Daylight Time,
Brigetterad@... writes:
<< . here's a pic to cheer you up... It's
Anastasia & Brandon Easter mornin'!!
They are adorable !!!!
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Chip: your other kid!.

2007-05-20 02:22:18

How cute!! Looks like he's in trouble!!!!!!!!!!!!!!!

Re: [Livingwithspinabifida] Sewing:CHIP

2007-05-20 01:09:37

NO Chip............... I think that's your dog's chair!!!!!!!!!!!!!
LOL,,, you are such a funny man!!! Your family is very lucky to
have you! I'm still sorry for all your pain........... but I'm glad that
you can keep the humor in your life.. it's the best medicine! Keep us
laughing! Brigette P
That's one of the main reason's we bought this house!

Chip: Cheer UP!

2007-05-19 20:07:23

In a message dated 4/27/2001 6:58:17 PM Central Daylight Time,
george.thayer@... writes:

I've been off the net for a few bad, painful days

Chip.......... I'm so sorry........... here's a pic to cheer you up... It's
Anastasia & Brandon Easter mornin'!!

Miracle cures

2007-05-19 17:05:45

Chip,
Your're correct in saying I don't care which president or prime minister (as in our case) may be diagnosed with spina bifida - but I do agree with you (and I do care) that it would lead to a flurry of research. Yes, USA has the resources, where NZ probably doesn't - so it probably wouldn't happen very quickly in NZ, seeing as though it has taken 30 years for our Government to compensate our vietnam vets. I heard some depressing news - after just getting back from another sleep study (that's another story). The health system is struggling to cope with an increase in demand for paediatric health care - children are being sent all around the country to wherever there is a space in special care baby units (SCBU's). This means separating families adding to stress, and dollars spent. It's not only SCBU units that are stretched - we heard the waiting lists in South Auckland to see a paediatrician is something like 600. Apparently the government's purse didn't budget for the
unexpected increase in population increase in the Auckland area. No wonder we struggle to get specialist service where we live in the Far North, 360 km North of our main paed hospital in the country. So we are a long way off finding miracle cures for anything at the moment. I hope your health system is in better shape!
Tui

Re: [Livingwithspinabifida] Where do you live??

2007-05-19 03:33:25

In a message dated 4/27/2001 11:40:49 AM Pacific Daylight Time,
Brigetterad@... writes:
<<
Beaumont Texas............. about 80 miles from Houston!!
Brigette...
Long ways from me.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Where do you live??

2007-05-19 01:17:21

In a message dated 4/26/2001 10:58:25 PM Central Daylight Time,
dee15mom@... writes:

where are you ?

Beaumont Texas............. about 80 miles from Houston!!
Brigette...
...
Proud Mom to Anastasia (L4-L5 SB) 3.5 and Brandon 14 months!
http://hometown.aol.com/brigetterad/myhomepage/family.html

Grandparents babysitting

2007-05-18 13:32:22

In a message dated 4/26/2001 10:53:07 PM Central Daylight Time,
g.t.ussher@... writes:

as long as there is open communication & understanding between all parties
it shouldn't matter how often the babysitting occurs.

agree!
Brigette...
...
Proud Mom to Anastasia (L4-L5 SB) 3.5 and Brandon 14 months!
http://hometown.aol.com/brigetterad/myhomepage/family.html

Re: [Livingwithspinabifida] Cranberry Capsules

2007-05-18 12:51:19

Diane, I use Bio-Organics Cranberry 10,000+
Each capsule contains: Concentrated cranberry
extract equiv to dry berries (10g) 10,000mg
Vitamin C 100mg

I give Aaron one per day sprinkled on his desert foods, i.e. apple & cereal baby food! I don't know if these are available where you are - I prefer these as I know they are a purer form of cranberry than some sources. The adult dose is 1-2 capsules daily with food. Now that you have asked this question, I will e.mail them for their recommendations... I hope I haven't been overloading Aaron!
This is the website for it:
http://www.bullivants.com.au/bnhpdata/ProdDetails-bio.asp?ProductCode=8836
Tui

Re: [Livingwithspinabifida] Alyssa

2007-05-18 11:23:12

What a gorgeous photo! Came out a bit blurry though.

Re: [Livingwithspinabifida] Okay, if someone

2007-05-17 20:20:44

In a message dated 4/26/2001 10:04:28 PM Central Daylight Time,
dee15mom@... writes:

....doesn't start talking, I am going to have to head to bed early again
tonight.

sooo DD........... where on this earth do you live??

Re: [Livingwithspinabifida] What is...........

2007-05-17 15:06:59

In a message dated 4/26/2001 9:58:16 PM Central Daylight Time,
dee15mom@... writes:

........... your favorite stage in your childrens lives ? What age?

hmmmmmmmmmmmm......... Ana's only almost 4.............. so I'd say.......
when she was a baby......soooooooo cute!!! She's growing out of her *evil*
stage right now and beginning to be my little angel again!!! Brigette

Re: [Livingwithspinabifida] Question

2007-05-17 10:28:24

In a message dated 4/26/2001 9:17:17 PM Central Daylight Time,
dee15mom@... writes:

Do you think grandparents should babysit their grandchildren full-time ?

full-time................. as in live with them?? Guess it depends on
the situation.... what's up?? Brigette

Re: [Livingwithspinabifida] Sewing

2007-05-17 10:17:14

In a message dated 4/26/2001 9:21:53 PM Central Daylight Time,
dee15mom@... writes:

Do you all sew ?

My moma used to make lots of clothes for us............ wish I would have
learned how... especially now that Anastasia rips her jeans/pants/overalls
to shreads in one knee!!!!!!!!!!!!!!!!!! :))))) Brigette

Okay, if someone

2007-05-17 00:21:12

....doesn't start talking, I am going to have to head to bed early again
tonight.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

What is...........

2007-05-16 22:04:11

........... your favorite stage in your childrens lives ? What age?
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Sewing

2007-05-16 10:59:04

I have this terrible urge to sew, but feeling to rotten to dig it all out to
do it ! :) I even bought a new sewing machine last week, and still haven't
taken it out of the box. I know, that is bad ! Do you all sew ?
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

To hot !

2007-05-16 09:16:51

This last couple of days have been so warm here. It made me realize I am NOT
ready for summertime !
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Alyssa

2007-05-15 20:35:57

In a swimsuit I added flowers to ! The color didn't come out to good, I used
my digital camera.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Question

2007-05-15 18:45:40

Do you think grandparents should babysit their grandchildren full-time ?
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Cranberry Capsules

2007-05-15 11:26:02

For those of you who use cranberry capsules for your kids I am
wondering how many you give per day? I found some at Target and they
are 405mg capsules but it only gives recommendations for adults, not
kids. Thanks!
Diane

Re: [Livingwithspinabifida] Remember

2007-05-15 01:20:37

Thanks for the beautiful story of love and remembering. Since my wife's death on April 5th due to complications of cancer, it was good that we were there for him and the rest of the family. Love abounded and still does.
Thanks again JD.

Chip

RE: [Livingwithspinabifida] PLANNED Parenting!!

2007-05-15 00:22:57

(Saying a little prayer for my OB/GYN and Travis' pediatrician, neuro, ortho, and urologist) They all recommended to me at one time or another to start taking folic acid if I planned on having another baby. Now with the new baby almost here, they have all asked about her and are excited to hear that she's checked out okay on all of the tests.

Stacy

PLANNED Parenting!!

2007-05-14 13:29:08

In a message dated 4/25/2001 10:56:21 AM Central Daylight Time,
g.t.ussher@... writes:

The same goes for folic acid - I had never been told about the use of it
for any of my PLANNED pregnancies

Ha!!!!!!!!!!! Anastasia was planned........... too bad the STUPID OLD Dr.
FAILED to tell me the info............... He KNEW we were trying to get
pregnant and even put me on Clomid for a week............... What an @ss!!
I'm still greatful to have Anastasia............ but he's still an @ss!!
:))
Brigette...
...
Proud Mom to Anastasia (L4-L5 SB) 3.5 and Brandon 14 months!
http://hometown.aol.com/brigetterad/myhomepage/family.html

Re: Remember

2007-05-14 08:26:33

Please accept my sincere condolenses on your loss! You are right,
life is too short not to tell those that mean so much to you how you
feel. Thanks for reminding us!
Diane

Re: CHIP

2007-05-14 00:03:25

Hi Chip,
Sometimes those doctors need to live with our challenges. We need
more doctors that have SB. I hope that you are better in a while and
didn't get a new tether. The doctor needs to live with the old
Porsche and live my way. I have never had a vehicle that i had new. I
have only once gotten to test-drive a car. I drive with hand
controls. Most of the cars i have had had over 100,000 miles on the
clock. I have also gotten to drive them for the first time in big
city traffic. Other than in the conversion company's parking lot.
Like you I also need to vent! Take care!
Kent Teffeteller, PH.W! (Professor of life, tumbles, and wheelies)
The Fall Guy!
Spasticus Maximus! (Your wheelie philosopher and visionary)

Winners Posted !

2007-05-13 21:31:38

Check out the winners !!!!!!!
<A HREF="http://www.geocities.com/momx14/Winners.html"
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Remember

2007-05-13 17:54:19

Good Morning All...

I just wanted to take a few moments to tell you all to remember those you love. Life is too short for the junk that gets thrown at us sometimes, and in that list of junk we sometimes forget to remember those we love. I wanted to share with you a personal story, because it is time relevant and Spina Bifida relevant, on this subject.

My father, soon-to-be 60 years old, finally found his soul mate a few years back. She, twenty years his junior, and he met over the Internet. He moved from California to Utah where they married on January 1, 1999. In a few short months they moved here to my hometown in Lane County, Oregon. She, Lisa, brought her son, Matt, then 16. The four of us; Dad, Lisa, Matt, and I finally created that semi-perfect family that you always hear about. I shared with the three of them my faith and my participation in a local church and soon thereafter they joined as well.

I could see that Dad and Lisa were in love, everyone could see it. Twenty years difference didn't matter, and it didn't matter that Matt was twelve years younger than me. Matt and I were inspired by the love of our respective parents and we became brothers beyond the title of "step-brother"...

Every single day Dad told Lisa he loved her, about three times a day. It may seem sickening, it may seem redundant, it may seem urbane. It's important though, you never know what might happen.

Situations happened, I had a surgery to remove the Lipoma and tethered cord situations. Lisa and Dad opened their home to me and took care of me for the months of recovery. Time moved on and situations changed. Sadly, Dad and Lisa had to move to Vancouver, Washington and we parted ways in September of 2000. I learned then that I loved the both of them so very much, it was very difficult to be apart from my family, but they had also become close friends and confidants, we had no secrets.

I saw them again in the last part of October when they came back to Lane County to get their things out of storage for their new house in Vancouver, which they were very happy and excited about. As they got in their car to leave I told the both of them that I loved them very much and would come up shortly to see them.

I hadn't had the opportunity to call them because I was adjusting to a new job and a new home. But I got a strange call on November 17th from the Clark County Sherriff (Vancouver, Washington is in Clark County) explaining to me that Dad and Lisa had befriended a man and had taken him in to help him out for just a few days. They dropped him off at the bus station as he had chosen to leave for another town. This was the first time in weeks that Dad and Lisa had been alone and decided to make a romantic evening of it. My father told my (step-)mother of how much he loved her and how he wanted to please her, she of course reciprocated, as they shopped for steaks and a small bottle of wine at the local grocery store. As they re-entered their home to begin preparations for a romantic evening between the two of them they were attacked by the very same man they had dropped off not two hours earlier.

My father awoke hours later locked, barred, and nailed in the bathroom of their home. He had been beaten severly and stabbed numerous times, it took him about twenty-four hours to exit the bathroom. Upon exiting he found Lisa who had been beaten and stabbed as badly as he had, but she had not survived.

It has taken us months to come to the place we are now surrounding Lisa's murder at 39 years old. The man who committed the crime sits in a Clark County Jail Cell awaiting trial and will fight his own fight, that is not the subject of this story. Logically, one would assume that my Dad would be the first lost by his age out of that loving relationship, but Divine Spirit moves in many mysterious ways.

I know that Lisa sits here with me today, with my father - who has moved in with me, and with my brother who lives with his grandmother in Utah. I also know that she knew at the last instant without a doubt, that she was loved by her "three boys". Lisa's birthday is Monday the 30th, she would have been forty.

The point of this story is to remember the ones you love, tell the ones you love clearly and repeatedly that you do love them. When they're gone, when you're gone, there will be no doubt that the love was present. You never know when or how we were meant to leave this place and move to the next.

Thank you for your time, for your hearts, and for listening.

- davisbarrett

Re: Wake up !!

2007-05-13 09:08:15

Well, had to work at my church today, like I do every Monday! This
past weekend wasn't the best. Anna had a 5 min. grand mal seizure on
Saturday afternoon. We just stayed home and kept an eye on her. Not
much else....
Diane

A sincere thank you from John,Denise,Erin

2007-05-13 06:14:59

Just wanted to say thank you for all your kind words and
encouragrment!!!! its people like all of you who make a difference in
this world.We are so excited as Erin will be with us all soon and we
want to share it with you everystep of the way if nobody minds ! We
have so many things to say to all of you but the closest words we can
bring about is to each of you a heartfelt thank you from the bottom
of our hearsts as you are all very special people!!!Thanks for all
the e-mails!Dont worry we wiil not let the doctors discourage us or
Erin,as a family we can do anything!We thank you again so very much!
john,denise,erin

Re: [Livingwithspinabifida] Wake up !!

2007-05-12 23:12:58

In a message dated 4/23/2001 2:49:38 PM Central Daylight Time,
dee15mom@... writes:

What is happening at your neck of the woods ?

Just cleaning the house and praying that Mr. Brandon (15 months) will want to
take a nap soon!!!!!!!!!!!!!!!!!! Brigette

Wake up !!

2007-05-12 14:19:24

Way to quite folks ! What is happening at your neck of the woods ? It's a
beauitful day here, but I am not doing a thing. I was a little under the
weather yesterday, but feel better today. Not sure what was wrong with me.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Club foot: CAROL!!

2007-05-12 06:48:00

In a message dated 4/22/2001 10:50:12 AM Central Daylight Time,
mk1cak1@... writes:

.? My unborn baby has been diagnosed with
spina bifada, hydro., and club feet.

Carol....(although you directed this question to Diane, I thought I'd answer
as well). My daughter (almost 4) was born with all that you mentioned. She
had club foot surgery (heel cord release) on both feet when she was around 13
or 14 months old. She now wears AFO's (foot braces) to keep her feet from
pulling down or back into the club position. The braces don't really bother
her much because she has no *feeling* below the knee......... but don't be
discouraged......... NOTHING stands in her way!!!!!!!!!! If you have any
questions feel free to ask. I'll answer them as truthful as I can..
Brigette...
...
Proud Mom to Anastasia (L4-L5 SB) 3.5 and Brandon 14 months!
http://hometown.aol.com/brigetterad/myhomepage/family.html

teams

2007-05-12 04:39:54

Diane,

I think I'll take you up on this proposition. Sorry I haven't been on the net much this week. Our phones in our neck of our town have been down for about 3 days and they still aren't working right. Also, had a former student that died in a car accident this past week. Spent some time with their family and at the calling hours. Very sad. This was a very nice young man in his mid 20's. I loved to kid the students both as a band director and as a principal. I loved it even more when the students came back with something and he kept me on my toes! I'll miss him.

Chip

Condolences/New Topic

2007-05-11 23:51:54

Thanks Izzy,

I guess I'll have to ask my family doc about it. He knows of my mom's condition.

Chip

Re: question for Diane Cole about spina bifada

2007-05-11 14:10:14

Yes, Anna has hydrocephalus. She has a vp shunt that was placed the
day after her birth. (Her spine was also closed the same day.) She
doesn't have club feet though. Diane

question for Diane Cole about spina bifada

2007-05-11 11:40:09

Did your daughter also have hydro.? My unborn baby has been diagnosed with
spina bifada, hydro., and club feet. They have also told me the worst case
scenario.
Thanks for any information,
Carol Kneece

Re: erin-our unborn(6-months)child

2007-05-10 23:45:46

First let me say hi and tell you how glad I am that you've joined our
happy little family here! I have 2 children. Ethan is 10 & Anna is 8.
Anna has SB and was also born by c-section. We didn't know before she
was born that she would have SB as my pregnancy was very normal and I
had no ultrasounds with either of my kids. Anna's level is L3-4. She
uses leg braces and a walker to walk but when she was born they gave
us the worse-case scenario that she may never walk and that she may
be retarded. She is in 2nd grade and except for needing help with
math and reading comprehension she is a "normal" 8 yr old. (Whatever
that means!) LOL!
Please feel free to ask any of us questions. That's why we're here!
What state are you in? Anna was born in Ohio but we live in Oregon
now. You may be able to find someone close to where you live who can
help you face-to-face.
Anna has seizures and is on Carbatrol. I've never heard of SB being
caused by Depakote before. That's a new one for me!
Again, welcome!
Diane Cole

Re: [Livingwithspinabifida] erin-our unborn(6-months)child

2007-05-10 20:18:07

Hi My name is Nicole. I am 25 and have Spina Bifida.The most important thing
I can tell you is don't anticipate too much and don't let the doctors dash
your dreams for Erin. For example when I was born the doctors told my parents
I would never walk and when I was 2 years old I got up and started chasing my
cat around the house and have walked unaided ever since. You have a long road
ahead, and I will be here to answer any questions. There have been so many
advances since I was born. I suffered with embarrassing incontinence until I
was 21 and had my bladder surgically closed and a mitrofanoff which is a hole
in my abdomen so I can catherize myself surgically put in and it changed my
life. If you have any questions please don't hesitate to contact me.
Nicole

erin-our unborn(6-months)child

2007-05-10 19:45:17

hello!
my wife and i are expecting our first child august 17th,by c-section
of course.we were really scared about erin being diagnosed with sb.we
know we have to continue with the pregnancy as we love our daughter
more than we could ever say and we never even considered letting her
go.erin has the sb right above her tailbone and we really dont know
what to expect in the upcoming months and are really scared!!you all
know how hospitals are!!we are very excited at the same time because
we cant wait to see her!!:0)
the really sad part besides erin having sb is how she got it...my
wife was very depressed because she has had 6 miscarraiges and was
perscribed depakote which the doctors told us is about 99% the cause
in their opinion.pretty sad when a drug does that isnt it?
well we would really appreciate it if somebody could try and help us
by explaining what we can expect!
thank you for your time and this group!god bless all of you!
john+denise+erin

Re: [Livingwithspinabifida] Chip/Ohio SB Clincs

2007-05-10 16:29:42

Chip,
I spoke with the coordinator at our SB clinic and came
up with names and phone numbers of 5 SB Clinics here
they are, and she did put them in order of our SB
pediatrians preference:
1. Cleavland Clinic Foundation 216-444-3578
2. Columbus Children's Hospital 614-461-2250
3. Cleavland Rainbow Children's Center 216-844-3566
4. Children's Hospital in Akron 216-3798195
5. Toledo Medical College Hospital 419-381-5269
Hope something pans out, I find it hard to believe
that with all the technology we have now that there
isn't some procedure that could at leaset help you
bring an end to losing any more fuction as well as
help witht he pain without so much medication.
Talk to you soon,
Alison

Re: [Livingwithspinabifida] Passing on ~ Please Read!!!

2007-05-10 00:16:45

The only books I actually buy are those written by Piers Anthony and an occasional Bible. All the rest are borrowed from the library.

Chip

Condolences/New Topic

2007-05-09 23:14:37

She has Anemia. Which type, I don't know.

Chip

ps. Debi is still taking her dad's death really hard. Today when she got home for her lunch break, she said she couldn't stop seeing her dad in the coffin.

teams

2007-05-09 15:39:23

That's funny. That's were it all started for me, Rainbow Babies and Children's Clinic. That's where I had my spinal fusion in 1972 and they knew that there was something else in there, but didn't do anything else b/c at that time, the only diagnostic tool was a knife. That was too dangerous.

I wonder if they have a sb clinic that specializes in Lipomeningocele. That's the main problem. The other types of sb are potentially more dangerous than lipomeningocele, therefore there is more known about those types than lipomeningocele. Also, lipomeningocele seems to affect people as the get older and they get worse as they get older, not better.

I'm really getting more depressed about my condition. I'm for just about anything at the moment. Maybe once the sun decides to stay and I can get out in it to take care of my flower beds and birds on a regular basis, I'll feel better and get back to my old self.

Chip

Passing on ~ Please Read!!!

2007-05-09 13:35:31

In a message dated 4/18/2001 10:47:15 PM Pacific Daylight Time,
jlmdaniels@... writes:
<<
Subject: From an Oklahoma City Fireman
I am an OKC fireman and I hope that Tuesday when Tim McVeighs book hits the
newsstands that NO ONE WILL BUY IT. This man is being given to much
publicity and shows NO REMORSE for the horrible crime that he committed. He
has admitted he is guilty.
He refers to the precious 19 children he murdered as "collateral damage" and
his only regret is that "their deaths proved to be a public relations
nightmare that undercut his cause." The pictures of these children and the
adults will always be in our minds. One hundred and sixty-eight innocent
people died that day. This man murdered them. Please do not make him some
sort of hero. He wants part of the proceeds to go to the Oklahoma City
Memorial. The Oklahoma City Memorial declines the money. Send the money to
the Memorial, but PLEASE DO NOT BUY THIS BOOK....!!!!!!
Thank you....and remember the precious children who were so innocent. Please
pass this on to everyone you know so that this monster does not get any more
publicity.
Paul Hinchey, Captain
Guymon Fire Dept.
Guymon, OK
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

teams/Alison

2007-05-09 01:12:27

Diane,
Katie has also been seeing Dr. Vincent at OHSU but we
are looking toward shriners for equipment help, is
this why you see your ortho there?
=====
Smile,
Alison ~ Mom to Katie, 5

Re: teams/Alison

2007-05-09 00:48:32

Alison, Anna sees her ortho at Shriners in Portland. She sees Dr Kent
Vincent and I like him very much. He also sees kids at OHSU/CDRC too.
She goes back for her yearly check-up on July 17+18 (so far).
Diane

teams

2007-05-08 19:12:13

"Diane S. Cole" <Bendcoles@...

Same here Alison. Anna sees her drs in a team setting except that we
see her ortho at Shriners but he still consults with the other drs.
Diane
Diane,

Anna is seen at OHSU/CDRC right? Is her ortho Dr. Aiona? We are thinking about RGOs for Katie and are looking for a good ortho.

Smile,
Alison ~ Mom to Katie, 5

Re: [Livingwithspinabifida] Christy

2007-05-08 09:39:27

pretty little lady!! Brigette

Christy

2007-05-08 06:47:34

My first born !
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Ad sponsors Needed !

2007-05-07 20:37:16

Hi !
We are looking for ad sponsors ! You can have your ad put in our pageant
program book for as low as $30 ! Three of my kids are working on earning
money for their upcoming pageant, and this is one way we have decided to do
that. If you can help by sponsoring us or know anyone who may be intersted,
please let me know ASAP !
Thank you !
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: [Livingwithspinabifida] Thanks Chip

2007-05-07 17:59:00

That makes my day.

What I can't stand is to know that a child is hurting.

Chip

Re: teams

2007-05-07 13:46:54

Same here Alison. Anna sees her drs in a team setting except that we
see her ortho at Shriners but he still consults with the other drs.
Diane
--- In Livingwithspinabifida@y..., Alison Reineccius <reinxa@y...
to clinic and see everyone in one place at one time, and which of you
see everyone seperatly on seperate days and times.
OR. It is great because all of her doctors have a great working
relationship and all communicate with each other very well. When she
is having a particular problem in an area such as urology we will
make extra trips to see just that department and have extra tests and
such.

Re: [Livingwithspinabifida] teams

2007-05-07 01:08:45

Hi all,

I have a question to throw out there and I am hoping for a large response and an ongoing discussion about it.

Which of you see your specialist in a "team" setting, where you go to clinic and see everyone in one place at one time, and which of you see everyone seperatly on seperate days and times.

Katie has always been seen every 6 months at SB clinic in Portland OR. It is great because all of her doctors have a great working relationship and all communicate with each other very well. When she is having a particular problem in an area such as urology we will make extra trips to see just that department and have extra tests and such.
Smile,
Alison ~ Mom to Katie, 5

DeeDee:Hip Sockets

2007-05-06 22:19:46

In a message dated 4/16/2001 4:07:49 PM Pacific Daylight Time,
g.t.ussher@... writes:
<<
Well there might be hope for us after all!
Tui
There is always hope !
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

DeeDee:Hip Sockets/Tui

2007-05-06 15:52:20

Amazing the difference between kids, when one or two lumbar are
involved. Aaron's slightly higher at L2 - I wonder if a lot of it is
also because of his severe Chiari.
Tui

DeeDee:Hip Sockets

2007-05-06 11:19:33

Well there might be hope for us after all!
Tui

Thanks Chip

2007-05-06 01:16:38

Thanks for the flower!!! It's so pretty! Brigette P.s. Anastasia is
doing Great!

BEAUTIFUL BABES Winners Posted !

2007-05-05 23:36:38

<A HREF="http://www.geocities.com/momx14/Winners.html"
</A
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: DeeDee:Hip Sockets/Tui

2007-05-05 22:18:42

She could kick but had a hard time bearing weight without someone
helping to keep her right leg straight. I don't know how much feeling
is needed but we knew she could feel the floor when she tried to
stand. Her level is L 3-4. Diane

DeeDee:Hip Sockets

2007-05-05 10:08:31

In a message dated 4/16/2001 9:48:00 AM Pacific Daylight Time,
george.thayer@... writes:
<<
AFter reading several of the "Hip" letters, I think it largely depends on
the type of sb you have. Typically, those having lipomeningocele don't have
that problem to deal with when those with other types of sb do.
Chip
Im sure that is true.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

DeeDee:Hip Sockets

2007-05-05 05:42:05

In a message dated 4/16/2001 8:03:10 AM Pacific Daylight Time,
AKT0225@... writes:
<< . I have
to have frequent injections of antibiotics and anti-inflammatory
medicine in the hip. Just my feelings.
Wow, I have wondered if Chelsea's will bother here as she gets older.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

DeeDee:Hip Sockets

2007-05-04 21:52:15

AFter reading several of the "Hip" letters, I think it largely depends on the type of sb you have. Typically, those having lipomeningocele don't have that problem to deal with when those with other types of sb do.

Chip

Anna was born with no right hip socket and you could literally take
her leg and turn it backwards! They built her a socket and placed her
hip into it and we've had no problem since! She would never have been
able to walk without this being done. I think she was 2 at the time
and she started walking around the age of 3 (with leg braces & a
walker).

Diane

DeeDee:Hip Sockets

2007-05-04 18:16:28

In a message dated 4/16/2001 1:02:37 AM Pacific Daylight Time,
g.t.ussher@... writes:
<< did she have any movement or weight-bear before the sockets were
created?
Chelsea still has none, and does it all.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: [Livingwithspinabifida] Oh my...........

2007-05-04 15:53:59

Looking forward to that very photogenic child of yours. What a beauty!

Chip

ps. Here is my sweetheart. This is a floral arrangement one of her friends got her b/c of the death of her father. The hanging basket is in the shape of a heart.
[INLINE]

Re: [Livingwithspinabifida] HAPPY EASTER!

2007-05-04 10:46:03

We celebrate the fact Christ is risen again.

Chip

DeeDee:Hip Sockets

2007-05-03 22:26:15

Diane - did she have any movement or weight-bear before the sockets were created? I thought there was no point doing major surgery in this area, but I wonder if it is? How much feeling or level of movement is necessary?

Tui

Anna was born with no right hip socket and you could literally take
her leg and turn it backwards! They built her a socket and placed her
hip into it and we've had no problem since! She would never have been
able to walk without this being done. I think she was 2 at the time
and she started walking around the age of 3 (with leg braces & a
walker).

Diane

DeeDee:Hip Sockets

2007-05-03 11:40:27

In a message dated 4/15/2001 8:43:32 PM Pacific Daylight Time,
Bendcoles@... writes:
<< She would never have been
able to walk without this being done
Chelsea walks & runs, and has since about age 2.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

DeeDee:Hip Sockets

2007-05-03 07:55:24

In a message dated 4/15/2001 8:43:32 PM Pacific Daylight Time,
Bendcoles@... writes:
<< and you could literally take
her leg and turn it backwards! They built her a socket and placed her
hip into it and we've had no problem since!
When Chelsea was a baby they said she would never walk, so refused to do
anything.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: DeeDee:Hip Sockets

2007-05-03 04:25:30

Anna was born with no right hip socket and you could literally take
her leg and turn it backwards! They built her a socket and placed her
hip into it and we've had no problem since! She would never have been
able to walk without this being done. I think she was 2 at the time
and she started walking around the age of 3 (with leg braces & a
walker).
Diane

Re: [Livingwithspinabifida] DeeDee:Tethered cord

2007-05-02 19:44:02

DeeDee,

Hi....I am still trying to catch up on the email from February and March from when my daughter had surgery, and spend some time in the hospital. Anyway a few months ago you stated that Trevor had tethered cord, and had lost some fuction. I am very interested to hear more about that. I went to SB Confrence at Shriners in Portland OR. One of our topics was on tethered cord, and whether it was worth de-tethering or not. The neurosurgeon plainly stated that if the child was losing or had lost fuction that they always do surgery. Let me know more or if I am totally off base here...
Smile,
Alison ~ Mom to Katie, 5

Re: [Livingwithspinabifida] DeeDee:Hip Sockets

2007-05-02 18:05:12

DeeDee,

My understanding is that all babies are born without very salow hip sockets, and that as the move and grow they grind deeper and deeper hip socket, therefore kids that have less or no leg movement tend to have dislocations and other hip problems. It is also why it is very common for the elderly to have hip replacements because they finally waer through the sockets.

Just what I have been told.
They say Chelsea has no hip sockets. Anyone have this also? They say they
don'tt do anything for it.
DeeDee ~ Mom to 15
California

Smile,
Alison ~ Mom to Katie, 5

Oh my...........

2007-05-02 11:32:23

You all should have seen my Chelsea this morning on her way to Church ! She
is wearing a beautiful Ivory dress (Thanks WEBB2U ~ EBAY), I curled her hair,
and she had a pretty ivory hairbow, she really looked beautiful ! She is my
little tomboy, rough neck , so she isnt into being frilly and such, but she
just glowed today. When I get the pics developed , I will share them.
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Re: [Livingwithspinabifida] Anastasia

2007-05-02 07:07:22

In a message dated 4/14/2001 11:15:49 PM Central Daylight Time,
dee15mom@... writes:

How is she doing ?
DeeDee

She's doing wonderful now!!! I tell you what.... I hope she never has to go
through another shunt malfunction again. It's painful seeing your little girl
crying and screaming "my head hurts me". It's a really long story behind the
whole situation, but she is almost back to normal... Thanks for asking,
Brigette...
...
Proud Mom to Anastasia (L4-L5 SB) 3.5 and Brandon 14 months!
http://hometown.aol.com/brigetterad/myhomepage/family.html

Re: [Livingwithspinabifida] Diane

2007-05-02 04:04:56

In a message dated 4/14/2001 6:08:46 PM Central Daylight Time,
Bendcoles@... writes:

Brigette, So sorry to hear about Anastasia! Sure hope all is well
with you all! Keep us posted on how she is doing!
Diane

Thanks Diane....... So far so good!! Brigette

HAPPY EASTER !

2007-05-01 17:14:57

We just wanted to wish you a HAPPY EASTER !!!!!!!
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Anastasia

2007-05-01 11:14:27

In a message dated 4/14/2001 3:42:04 PM Pacific Daylight Time,
Brigetterad@... writes:
<< cause we've been going through h*ll with Anastasia for a week now.
She ended up having a shunt revision Fri. morning and we just got back from
Houston today.
How is she doing ?
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

Trevor &amp; Travis Birthday Winners !!!!

2007-05-01 03:04:56

Congratulations to ...................
Deena ~ deenamccauley@...
Karen ~ MDMKHM@...
Please email me your mailing address so I can mail your prize !!!
DeeDee ~ Mom to 15
California
<A HREF="http://www.geocities.com/momx14/PhotoContest.html?984112852430"
BeautifulBabesFreePhotoContest</A

HAPPY EASTER!

2007-05-01 00:23:38

To all who celebrate, please have a Happy Easter!
The Coles
Jeff, Diane, Ethan & Anna