Re: MY grandaughter - Abigail

[Guest guest]

Hi,

So your granddaughter can run?  My dd cannot run or jump and waddles badly when

she walks.  She seems to have footdrop and has to pick up her feet higher than

normal to walk.  Still determining if it is from her tcs or her clubfoot both

that she was born with. or something else. 

Can your granddaughter jump and moves fairly normal except for that little side

to side? Does she have pain?  Carol

________________________________

To: tetheredspinalcord

Sent: Thursday, August 9, 2012 1:44 PM

Subject: MY grandaughter - Abigail

 

Hello Im new to the group............ and just feel I need to try to understand

a bit more

about my grandaughters condition - she was born with Spinal Dysraphism

I think I spelt it right... ! Abigail is 5 yrs old in October , she had major

surgery

when she was nearly four at Great Ormond Street in London - to untether the

spinal cord.... she has no feeling in her feet but still manages to walk

although

she does have a gait ! ie walks a bit side to side ! she is just starting to

feel different

from the other children now and its heartbreaking - she had her school sports

day and

went in the running race .. me and her Dad had tears in our eyes as she battled

on and finished

the race ! what a Proud Grandma I was .

Anyway... thanks for listening to me and I wish you all the best in the world.

Jane

[Guest guest]

Hello Jane, I  am a proud grandmom of a seven year old grandson with spina

bifida and yes it does break my heart to see him realize he is different then

his friends.  He is recovering from surgery his fourth, Dr. Jallo from

Hopkins performed his last three.  He is a strong and determined little boy who

loves to swim.  As he watches the olympics on t.v. he told his mother one day

he will be there.   He has come a long way and now catherizes himself every

three hours and continues to do so in school.  His friends at school are his

biggest cheerleaders as he races to the finish line with the biggest smile, and

we too, with tears in our eyes as we watch.  I know this website is more for

adults  than children, but I have not found one.  Maybe someone knows of one

from this website and could past it on.  God Bless and continued prayers for

your Abigail   Thanks to all

MY grandaughter - Abigail

 

Hello Im new to the group............ and just feel I need to try to understand

a bit more

about my grandaughters condition - she was born with Spinal Dysraphism

I think I spelt it right... ! Abigail is 5 yrs old in October , she had major

surgery

when she was nearly four at Great Ormond Street in London - to untether the

spinal cord.... she has no feeling in her feet but still manages to walk

although

she does have a gait ! ie walks a bit side to side ! she is just starting to

feel different

from the other children now and its heartbreaking - she had her school sports

day and

went in the running race .. me and her Dad had tears in our eyes as she battled

on and finished

the race ! what a Proud Grandma I was .

Anyway... thanks for listening to me and I wish you all the best in the world.

Jane

[Guest guest]

There is a big list for kids, but it hasn't been mentioned in a while. I

believe it is also a yahoo group. I think it is called LMC-TC or LMC-TCS or

something like that. Hopefully someone will remember if you can't find it

under those two. But you are always welcome here. It's not strictly foe

adults, but we tens to get more on here (at least that stay. A lot more

join for the info on the initial surgery and when their child is recovered

(which they tend to do more quickly than adults), they leave the list. The

list I'm thinking of is strictly for less, but not just TC. I believe it

covers all the NTDs. Hopefully someone will remember and post the correct

info.

Jenn

> **

>

>

> Hello Jane, I am a proud grandmom of a seven year old grandson with spina

> bifida and yes it does break my heart to see him realize he is different

> then his friends. He is recovering from surgery his fourth, Dr. Jallo from

> Hopkins performed his last three. He is a strong and determined

> little boy who loves to swim. As he watches the olympics on t.v. he told

> his mother one day he will be there. He has come a long way and now

> catherizes himself every three hours and continues to do so in school. His

> friends at school are his biggest cheerleaders as he races to the finish

> line with the biggest smile, and we too, with tears in our eyes as we

> watch. I know this website is more for adults than children, but I have

> not found one. Maybe someone knows of one from this website and could past

> it on. God Bless and continued prayers for your Abigail Thanks to all

> MY grandaughter - Abigail

>

>

>

> Hello Im new to the group............ and just feel I need to try to

> understand a bit more

> about my grandaughters condition - she was born with Spinal Dysraphism

> I think I spelt it right... ! Abigail is 5 yrs old in October , she had

> major surgery

> when she was nearly four at Great Ormond Street in London - to untether

> the

> spinal cord.... she has no feeling in her feet but still manages to walk

> although

> she does have a gait ! ie walks a bit side to side ! she is just starting

> to feel different

> from the other children now and its heartbreaking - she had her school

> sports day and

> went in the running race .. me and her Dad had tears in our eyes as she

> battled on and finished

> the race ! what a Proud Grandma I was .

> Anyway... thanks for listening to me and I wish you all the best in the

> world.

>

> Jane

>

>

[Guest guest]

The group for kids is LMC-TCS.    I have just scheduled surgery on my tethered

cord for Sept 5th but it could change to the week of Aug 27th.  My doctor is

Petra Klinge and she is pediactric neruosurgeon.   She seems very

knowledgeable.  I work in a doctor's office and had one of the doctor's check

her out and he said she is a good doctor.   I've met with her twice so far and I

really like her.  I'm certainly not looking forward to the operation but she did

spend alot of time explaining everything that she will do.   I guess I won't

know for sure about her until after the surgery but I feel confident in her

ability to do the surgery.  I live in RI and she is with Rhode Island Hospital

in case anyone in this area is looking for a doctor.

Terry

________________________________

To: tetheredspinalcord

Sent: Saturday, August 11, 2012 10:07 AM

Subject: Re: MY grandaughter - Abigail

There is a big list for kids, but it hasn't been mentioned in a while. I

believe it is also a yahoo group. I think it is called LMC-TC or LMC-TCS or

something like that.  Hopefully someone will remember if you can't find it

under those two. But you are always welcome here. It's not strictly foe

adults, but we tens to get more on here (at least that stay.  A lot more

join for the info on the initial surgery and when their child is recovered

(which they tend to do more quickly than adults), they leave the list. The

list I'm thinking of is strictly for less, but not just TC. I believe it

covers all the NTDs. Hopefully someone will remember and post the correct

info.

Jenn

> **

>

>

> Hello Jane, I  am a proud grandmom of a seven year old grandson with spina

> bifida and yes it does break my heart to see him realize he is different

> then his friends.  He is recovering from surgery his fourth, Dr. Jallo from

> Hopkins performed his last three.  He is a strong and determined

> little boy who loves to swim.  As he watches the olympics on t.v. he told

> his mother one day he will be there.  He has come a long way and now

> catherizes himself every three hours and continues to do so in school.  His

> friends at school are his biggest cheerleaders as he races to the finish

> line with the biggest smile, and we too, with tears in our eyes as we

> watch.  I know this website is more for adults  than children, but I have

> not found one.  Maybe someone knows of one from this website and could past

> it on.  God Bless and continued prayers for your Abigail  Thanks to all

> MY grandaughter - Abigail

>

>

>

> Hello Im new to the group............ and just feel I need to try to

> understand a bit more

> about my grandaughters condition - she was born with Spinal Dysraphism

> I think I spelt it right... ! Abigail is 5 yrs old in October , she had

> major surgery

> when she was nearly four at Great Ormond Street in London - to untether

> the

> spinal cord.... she has no feeling in her feet but still manages to walk

> although

> she does have a gait ! ie walks a bit side to side ! she is just starting

> to feel different

> from the other children now and its heartbreaking - she had her school

> sports day and

> went in the running race .. me and her Dad had tears in our eyes as she

> battled on and finished

> the race ! what a Proud Grandma I was .

> Anyway... thanks for listening to me and I wish you all the best in the

> world.

>

> Jane

>

>

[Guest guest]

There is also a Facebook group dedicated to parents of children with tethered

cord....think it's called Parents of children with tethered cord. Though it's

mostly parents there alot of adults that have it that are on it too sharing

their personal stories. Very welcoming and some great pictures to put a face on

the disease!

Sent from my iPad

[Guest guest]

Thanks for sharing that I think I will look it up:)