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was almost 4.

G

On Tuesday, February 24, 2004, at 09:35 AM, NPTQueenie@... wrote:

> i am interested in seeing at what age other CHARGER's started walking.

>

> spent her first 5 months of life in the NICU then 7months later had

> open

> heart surgery followed by cardiac and blood pressure arrest resulting

> in hypoxia.

> we feel she still cannot walk mainly b/c of the brain injury versus

> CHARGE.

> The CHARGE gives her low tone but the arrest made her hyper toned.

> obvioulsy

> she was not walking before the heart surgeyr since she was only 12

> months old

> and only home with us 6 months with a big hole in her heart.

> i appreciate hering what ages most others walked.

> thanx

> cathie, mom to 8 CHARgE (walking with assistance in her walker!)

>

>

>

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Hi Cathie,

It will be interesting to see the responses about age of walking. I

think it is hard to understand exactly what the mechanisms are that

prevent walking 'til older for most of our kids.

It is fantastic that is walking with assistance in her

walker!!!!!!

Kendra walked in a walker for about 1.5 years and then she was able to

walk without it. In her case, she also arrested for a long time, about

7 minutes when she was one month old in the NICU, due to obstruction in

the trachea, and once again in the hospital. The doctors said she had

no likely brain damage from that event. She also had low tone for a long

time. She had absent deep tendon reflexes when she was two years old.

Then for a while she had the opposite, or high tone briefly.

After walking with the walker from about 20 months old to about 36

months, she was able to walk, but very briefly. She gained strength and

walked very well by the time she was 4. The OT said she would walk

" normally' by the time she was 7. But, she is now 17 and I wouldn't

call her walk exactly " normal " . She still has mild balance issues and

her visual processing causes some problems also. Part of this is related

to the vestibular system.

So, I generally say that Kendra started to walk independently when she

was 3 and 1/2 years old.

BEST OF LUCK with and her walking!!! For us, hosptial corridors

were the very best place to use the walker because they were wide, and

brightly lit with no obstructins such as chairs or tables. Kendra

learned to ZOOOM down those halls! It gave her a lot of confidence that

she didn't bump into things and she could just keep going and going.

Mom to Kendra, and Camille

age of walking

i am interested in seeing at what age other CHARGER's started walking.

spent her first 5 months of life in the NICU then 7months later had open

heart surgery followed by cardiac and blood pressure arrest resulting in

hypoxia.

we feel she still cannot walk mainly b/c of the brain injury versus

CHARGE.

The CHARGE gives her low tone but the arrest made her hyper toned.

obvioulsy

she was not walking before the heart surgeyr since she was only 12

months old

and only home with us 6 months with a big hole in her heart.

i appreciate hering what ages most others walked.

thanx

cathie, mom to 8 CHARgE (walking with assistance in her walker!)

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hi cathie

wesley started walking with assistance at two that's with most of the

weight on someone else holding his hands at three we got him a walker

to use and he used that for about a year

before he learned to walk on his own. I think it was during kindergarten

that he seemed ok walking but not long distances and he still fell a

lot. Last year 9 years old and in third

grade the school does a 5 K end of the year run. the years before he

walked and rode a wagon. last year he ran almost the whole way passing

me up I had to catch him on the way back. I was

with him when he started to wear down and got him to slow a bit after he

took a little fall. but he was convinced he was going to win that race.

tons of kids came in before him but I told him

he was a winner for making it to the end and the fact that he ran most

of it amazing to me .

KayRena. mom to Wesley charge age 10 Jake 8 Tristen 6 zachary 3

and KayLeigh 21 weeks gestation.

NPTQueenie@... wrote:

> i am interested in seeing at what age other CHARGER's started walking.

> spent her first 5 months of life in the NICU then 7months later had open

> heart surgery followed by cardiac and blood pressure arrest resulting in

hypoxia.

> we feel she still cannot walk mainly b/c of the brain injury versus CHARGE.

> The CHARGE gives her low tone but the arrest made her hyper toned. obvioulsy

> she was not walking before the heart surgeyr since she was only 12 months old

> and only home with us 6 months with a big hole in her heart.

> i appreciate hering what ages most others walked.

> thanx

> cathie, mom to 8 CHARgE (walking with assistance in her walker!)

>

>

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Walking, hmmm I think up wright moving with my two legs I was likely

two ish or so. Cant say I had good balance or could walk in a

straigt line or walk properly without a weird " gate " . I still tend

to stagger a little and walk a little to one side. I " self correct "

my walking all the time. I dont really notice it at all. I only

mention it cause its been pointed out by the most annoying way by a

very anoying person so yah. I walked a little later then normal but

my walk is not what you could consider 100 percent normal but if it

gets me from point a to point b then im happy :)

Chantelle

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Hi,

Jack walked independently at 4yrs4mths. He is now 6.5yrs old and is still not

confident walking out of doors especially in open spaces. He cannot walk for

any distance without getting tired out and we use his maclaren Major for all

but the shortest journeys.

Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE

Scotland

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just turned 2 and is not walking yet, although she is progressing.

Currently she will stand unaided if she has something to support her (like

if she is in front of the couch or a chair) We are working on getting her

to walk along the couch using her hands to steady herself. She definitely

has the strength to do it at this point. It seems more of a balance issue

and a little bit motivation (she doesn't seem real interested).

Seems like we heard someone say that 2-5 yrs old is a decent avg for Charge

kids learning to walk. A lot will depend on their issues (vision, balance

and strength being the key factors which are all common Charge problems).

Christian Lobaugh

Husband to Ingrid, Father to (5) and (2 yr old charger)

age of walking

i am interested in seeing at what age other CHARGER's started walking.

spent her first 5 months of life in the NICU then 7months later had open

heart surgery followed by cardiac and blood pressure arrest resulting in

hypoxia.

we feel she still cannot walk mainly b/c of the brain injury versus CHARGE.

The CHARGE gives her low tone but the arrest made her hyper toned.

obvioulsy

she was not walking before the heart surgeyr since she was only 12 months

old

and only home with us 6 months with a big hole in her heart.

i appreciate hering what ages most others walked.

thanx

cathie, mom to 8 CHARgE (walking with assistance in her walker!)

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My daughter started with a walker at 3 years and is now fully

independent at age 4 1/2 - she still struggles on uneven surfaces and

outside but is doing remarkably well. She has retina coloboma's and

mild hearing loss.

Kim Gilbert

Re: age of walking

hi, Tim did not start walking independantly until he was almost

4--holding

hands etc, around 3-31/2.

age of walking

> i am interested in seeing at what age other CHARGER's started walking.

> spent her first 5 months of life in the NICU then 7months later had

open

> heart surgery followed by cardiac and blood pressure arrest resulting

in

hypoxia.

> we feel she still cannot walk mainly b/c of the brain injury versus

CHARGE.

> The CHARGE gives her low tone but the arrest made her hyper toned.

obvioulsy

> she was not walking before the heart surgeyr since she was only 12

months

old

> and only home with us 6 months with a big hole in her heart.

> i appreciate hering what ages most others walked.

> thanx

> cathie, mom to 8 CHARgE (walking with assistance in her walker!)

>

>

>

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hi, Tim did not start walking independantly until he was almost 4--holding

hands etc, around 3-31/2.

age of walking

> i am interested in seeing at what age other CHARGER's started walking.

> spent her first 5 months of life in the NICU then 7months later had open

> heart surgery followed by cardiac and blood pressure arrest resulting in

hypoxia.

> we feel she still cannot walk mainly b/c of the brain injury versus

CHARGE.

> The CHARGE gives her low tone but the arrest made her hyper toned.

obvioulsy

> she was not walking before the heart surgeyr since she was only 12 months

old

> and only home with us 6 months with a big hole in her heart.

> i appreciate hering what ages most others walked.

> thanx

> cathie, mom to 8 CHARgE (walking with assistance in her walker!)

>

>

>

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was 2.4 years when he started walking.

age of walking

i am interested in seeing at what age other CHARGER's started walking.

spent her first 5 months of life in the NICU then 7months later had open

heart surgery followed by cardiac and blood pressure arrest resulting in

hypoxia.

we feel she still cannot walk mainly b/c of the brain injury versus CHARGE.

The CHARGE gives her low tone but the arrest made her hyper toned.

obvioulsy

she was not walking before the heart surgeyr since she was only 12 months

old

and only home with us 6 months with a big hole in her heart.

i appreciate hering what ages most others walked.

thanx

cathie, mom to 8 CHARgE (walking with assistance in her walker!)

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was 2.4 years when he started walking.

age of walking

i am interested in seeing at what age other CHARGER's started walking.

spent her first 5 months of life in the NICU then 7months later had open

heart surgery followed by cardiac and blood pressure arrest resulting in

hypoxia.

we feel she still cannot walk mainly b/c of the brain injury versus CHARGE.

The CHARGE gives her low tone but the arrest made her hyper toned.

obvioulsy

she was not walking before the heart surgeyr since she was only 12 months

old

and only home with us 6 months with a big hole in her heart.

i appreciate hering what ages most others walked.

thanx

cathie, mom to 8 CHARgE (walking with assistance in her walker!)

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Bradley walked when he was 4 years old He really surprised us as we had just

purchased a wheel chair. We donated the wheel chair as he didn't need it

anymore. He has an awkward gait but he can walk and even run a bit!!

He does have the balance disorder due to malformation of the semi circular

canals. But he has vision and proprioception (knows where he is in space) so he

can walk.... ck

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, I believe, was holding onto furniture around 4/5. She

used a walker with assistance and someone holding onto her til she

was in 3rd grade or so. Her wheelchair, at that point, was only used

for transporting and outings. I remember watching push her

chair around the halls at school, with an aide. Soon she was trying

to run over people with it. began to walk independantly at

12. She spent the 1st 2 years of her life in the hospital with

Tracheal Malasia, T & E Fistula, transposition of the heart, blah,

blah, blah...

, friend and caregiver to , 23, CHARGE

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, I believe, was holding onto furniture around 4/5. She

used a walker with assistance and someone holding onto her til she

was in 3rd grade or so. Her wheelchair, at that point, was only used

for transporting and outings. I remember watching push her

chair around the halls at school, with an aide. Soon she was trying

to run over people with it. began to walk independantly at

12. She spent the 1st 2 years of her life in the hospital with

Tracheal Malasia, T & E Fistula, transposition of the heart, blah,

blah, blah...

, friend and caregiver to , 23, CHARGE

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hi Jody,

that sounds a bit like what Josh is almost up to ... he pulls up on stuff,

and sways around like mad! ... not quite as steady yet as Ethan sounds to

e - go Ethan!

Jo

----- Original Message -----

> From: Jody Wolfe

>

> Ethan is not walking yet (20 months old), but like , will stand

> supported against something. Despite Ethan's fragile respiratory status

> and poor vision and hearing, he is progressing physically.

>

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Jeff walked independently at 6 yrs of age.

Smiles from,

Baker - Mom to Jeff (19 yrs. CHARGEr), Steve (20 yrs. and serving a

Mission in Brazil), and others married with children of their own.

Idaho, USA

thanx everyone, this is indeed interesting to see the ages, it appears

most

do walk by 4.

anyone else with info, pls keep it coming!

cathie, mom to erika

p.s. thanx agian wendy!

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Kennedy walked at age 3

Re: age of walking

hi, Tim did not start walking independantly until he was almost 4--holding

hands etc, around 3-31/2.

age of walking

> i am interested in seeing at what age other CHARGER's started walking.

> spent her first 5 months of life in the NICU then 7months later had open

> heart surgery followed by cardiac and blood pressure arrest resulting in

hypoxia.

> we feel she still cannot walk mainly b/c of the brain injury versus

CHARGE.

> The CHARGE gives her low tone but the arrest made her hyper toned.

obvioulsy

> she was not walking before the heart surgeyr since she was only 12 months

old

> and only home with us 6 months with a big hole in her heart.

> i appreciate hering what ages most others walked.

> thanx

> cathie, mom to 8 CHARgE (walking with assistance in her walker!)

>

>

>

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thanx everyone, this is indeed interesting to see the ages, it appears most

do walk by 4.

anyone else with info, pls keep it coming!

cathie, mom to erika

p.s. thanx agian wendy!

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thanx everyone, this is indeed interesting to see the ages, it appears most

do walk by 4.

anyone else with info, pls keep it coming!

cathie, mom to erika

p.s. thanx agian wendy!

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still doesn't do well with the long journeys and it makes

it much more pleasant for both of us if we compromise sometimes and

she uses her Convaid cruiser. It is basically a medical stroller.

One of her legs is also longer than the other, anyone have any ideas

on how we go about raising one sole of her shoe. She can get around

well, but walks with a gait and her foot dragging. Also, just got a

call from Endo! All of her tests are in and it seems as though she

has a very low bone mass. I knew this right away, after attending

the conference, now I am glad that someone else does too! Waiting

for a call to meet with him for a plan of attack...

and

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Our son Garland is missing a semi circular canal in both ears and has

a moderate hearing loss. We were concerned about the walking issue

and stumbled accross the missing canals while probing for the exact

cause of the hearing loss. The CAT scan confirmed the hearing loss

cause and also the balance issue. At 23 months Garland received his

walker (you pull this one, not push) and now at 26 months his is

walking alot on his own. He has ankle braces to help support his

weak ankles and his fat belly (38 lbs and over 3ft tall). At times he

picks up the walker and carrys it for support. Like some of the

other kids, his reaction to falling is slightly delayed and his

facial palsy slows down the blinking. I too believe there is a

slight disconnect somewhere, but it improves everyday. We did not

know if he would figure the walking thing out or not. One evening he

stood up and took off. The walker was the key to him figuring it out.

Randy, Garlands poppy

-- In CHARGE , NPTQueenie@a... wrote:

> i am interested in seeing at what age other CHARGER's started

walking.

> spent her first 5 months of life in the NICU then 7months later had

open

> heart surgery followed by cardiac and blood pressure arrest

resulting in hypoxia.

> we feel she still cannot walk mainly b/c of the brain injury versus

CHARGE.

> The CHARGE gives her low tone but the arrest made her hyper

toned. obvioulsy

> she was not walking before the heart surgeyr since she was only 12

months old

> and only home with us 6 months with a big hole in her heart.

> i appreciate hering what ages most others walked.

> thanx

> cathie, mom to 8 CHARgE (walking with assistance in her

walker!)

>

>

>

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Eddie is approaching 4 1/2 and is not yet walking independently. He's not

independent with the walker either--and sometimes won't even stand up--but

holding onto an adult's hands, he can really go!

Joanne

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was 8.5 years old before she began to walk independently. She loved

to be in an infant walker. She could run anywhere when she was in one.

However, she almost always went backwards. She wore out 3 of them before we

started using an adult type walker.

At age 15, she had finally become more comfortable walking on grass and other

uneven surfaces. She will still wait for assistance for a hill or steep

incline. Snow is her next obstacle she is working on. When she sees a snow

pile

or snow on the ground, she freezes, holds out a hand and waits for help.

Sheryl

Mom to 17 CHARGE and Mitch 18

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