Re: weight question about RSS-kids

[Guest guest]

Hi Olcay,

Welcome to our group. How is Berra? I hope all is well. We hear so

little about him. I often wonder how he is doing since he is in

Turkey and does not have access to the resources available in other

contries.

Since I reside in the US, I can send you a link to the US Center for

Dieseas Control (CDC) web page. It contains growth charts for average

American children. You can locate heigth and weight by age on the

charts and see how Berra compares to an average American child.

The CDC web page is http: //www.cdc.gov/growthcharts/

Also, you can contact The Magic Foundation here in the USA and get

growth charts for RSS kids. I think you will have to call or e-mail

them. The charts are not available on line. At least they weren't the

last time I checked several months ago. The Magic Foundation can be

located at www.magicfoundation.org

I hope this helps and if you can, please let us know how Berra is

doing.

Ken M

> Hi All,

>

> I'm the uncle of BERRA who is one of the RSS kids in Turkey. I

wonder

> the weight stages of the RSS kids according to age, even more month.

> Could you provide some sources for that, like websites or books?

>

> Thanks in advance.

>

> Olcay or OJ

>

> Olcay ERGUN, M.Sc.

> Computer Engineer

> +90-532-697 37 12

> +90-505-412 27 14

> olcay@i...

> Istanbul-Turkiye

>

>

>

> __________________________________

> Discover Yahoo!

> Get on-the-go sports scores, stock quotes, news and more. Check it

out!

> http://discover.yahoo.com/mobile.html

[Guest guest]

Hi Ken M,

I'd like to thank you for this warm message. Please accept my execuaea

for the late reply.

Berra, it's she, is doing well to me. However, I have no another RSS

kids around me. We just meet a few families who have a RSS kids and

their kids are well as Berra.

Berra's problems are feeding and her movement ability. it's too hard to

feed her. The main reason is her refluee. We use some medicine for this

and looks like help us. Her weigth and heigth is looks like in average

for RSS babies. She can turn her bodies and sit very easily. But

nothing else. We want her to walk some how. I hope this happen some

times. OTher thing are just great on Berra. She is very smart. She can

say few words, like mam, bab, give me or take. She can get what we are

talking to her.

We hope that she will grow enough to have a good life.

Thanks for your helps.

Olcay ERGUN

--- kmerrith wrote:

> Hi Olcay,

>

>

> Welcome to our group. How is Berra? I hope all is well. We hear so

> little about him. I often wonder how he is doing since he is in

> Turkey and does not have access to the resources available in other

> contries.

>

>

> Since I reside in the US, I can send you a link to the US Center for

> Dieseas Control (CDC) web page. It contains growth charts for average

>

> American children. You can locate heigth and weight by age on the

> charts and see how Berra compares to an average American child.

>

> The CDC web page is http: //www.cdc.gov/growthcharts/

>

> Also, you can contact The Magic Foundation here in the USA and get

> growth charts for RSS kids. I think you will have to call or e-mail

> them. The charts are not available on line. At least they weren't the

>

> last time I checked several months ago. The Magic Foundation can be

> located at www.magicfoundation.org

>

>

> I hope this helps and if you can, please let us know how Berra is

> doing.

>

>

> Ken M

>

>

>

>

>

> > Hi All,

> >

> > I'm the uncle of BERRA who is one of the RSS kids in Turkey. I

> wonder

> > the weight stages of the RSS kids according to age, even more

> month.

> > Could you provide some sources for that, like websites or books?

> >

> > Thanks in advance.

> >

> > Olcay or OJ

> >

> > Olcay ERGUN, M.Sc.

> > Computer Engineer

> > +90-532-697 37 12

> > +90-505-412 27 14

> > olcay@i...

> > Istanbul-Turkiye

> >

> >

> >

> > __________________________________

> > Discover Yahoo!

> > Get on-the-go sports scores, stock quotes, news and more. Check it

> out!

> > http://discover.yahoo.com/mobile.html

>

>

>

>

>

[Guest guest]

Hi Olcay,

Apology accepted but it is not necessary. We are all busy with

careers and families, so I know it takes time to respond.

Glad to hear Berra is doing well.

I am not familar with the health care system in Turkey. Do they have

any type of Socail Services programs. Here in the USA we have a

program called Early Intervention. They provide in home therapy like

physical therapy, occupational therapy, speech therapy and nutrition

counseling. they also provide other assistance as needed. Maybe Berra

could get some help from such aprogram in Turkey.

My son walked late. He was 18 months old before he even stood up. He

was almost 2 before he walked. The same with his talking. He was over

2 before he spoke. We had to teach him sign language for a while.

As far as any one knows, kids with RSS grow up and have normal lives.

They are just smaller than most. On this list, some people with SS

have recently graduated from high school and are going to college.

One person just got married. Pretty much the same as anyone else. So,

barring any other health complications, Berra should be just fine.

If there is anything we can do, information you need, please don't

hesitate to ask. We will do what we can.

I hope this helps.

Ken M

> > > Hi All,

> > >

> > > I'm the uncle of BERRA who is one of the RSS kids in Turkey. I

> > wonder

> > > the weight stages of the RSS kids according to age, even more

> > month.

> > > Could you provide some sources for that, like websites or books?

> > >

> > > Thanks in advance.

> > >

> > > Olcay or OJ

> > >

> > > Olcay ERGUN, M.Sc.

> > > Computer Engineer

> > > +90-532-697 37 12

> > > +90-505-412 27 14

> > > olcay@i...

> > > Istanbul-Turkiye

> > >

> > >

> > >

> > > __________________________________

> > > Discover Yahoo!

> > > Get on-the-go sports scores, stock quotes, news and more. Check

it

> > out!

> > > http://discover.yahoo.com/mobile.html

> >

> >

> >

> >

> >

[Guest guest]

Does she get physical therapy? We had the same problem with na low to no

muscle tone. now the doctors are excited along with us that she has some good

muscle tone. Thats what 4.5 years of PT every other day will do. We would put

her on a ball and bounce her, Have her hit the ball while we hold her arms and

show her. put her on her stomache and slowly move a mat so she would feel the

movement. It seemed crazy at firrst but to see her now is unbelievable. We would

try to make a game out of everything from crawling to sitting to steps to

walking. We still are working on walking well( i think she does great but i

guess she goes up stairs wrong.......who cares she gets up them is what i told

her teacher), she still can't draw a letter but once her fingers get going I'm

sure she will be my picasso.

Good luck

Marcy nas mom 4.5yrs

olcay ergun wrote:

Hi Ken M,

I'd like to thank you for this warm message. Please accept my execuaea

for the late reply.

Berra, it's she, is doing well to me. However, I have no another RSS

kids around me. We just meet a few families who have a RSS kids and

their kids are well as Berra.

Berra's problems are feeding and her movement ability. it's too hard to

feed her. The main reason is her refluee. We use some medicine for this

and looks like help us. Her weigth and heigth is looks like in average

for RSS babies. She can turn her bodies and sit very easily. But

nothing else. We want her to walk some how. I hope this happen some

times. OTher thing are just great on Berra. She is very smart. She can

say few words, like mam, bab, give me or take. She can get what we are

talking to her.

We hope that she will grow enough to have a good life.

Thanks for your helps.

Olcay ERGUN

--- kmerrith wrote:

> Hi Olcay,

>

>

> Welcome to our group. How is Berra? I hope all is well. We hear so

> little about him. I often wonder how he is doing since he is in

> Turkey and does not have access to the resources available in other

> contries.

>

>

> Since I reside in the US, I can send you a link to the US Center for

> Dieseas Control (CDC) web page. It contains growth charts for average

>

> American children. You can locate heigth and weight by age on the

> charts and see how Berra compares to an average American child.

>

> The CDC web page is http: //www.cdc.gov/growthcharts/

>

> Also, you can contact The Magic Foundation here in the USA and get

> growth charts for RSS kids. I think you will have to call or e-mail

> them. The charts are not available on line. At least they weren't the

>

> last time I checked several months ago. The Magic Foundation can be

> located at www.magicfoundation.org

>

>

> I hope this helps and if you can, please let us know how Berra is

> doing.

>

>

> Ken M

>

>

>

>

>

> > Hi All,

> >

> > I'm the uncle of BERRA who is one of the RSS kids in Turkey. I

> wonder

> > the weight stages of the RSS kids according to age, even more

> month.

> > Could you provide some sources for that, like websites or books?

> >

> > Thanks in advance.

> >

> > Olcay or OJ

> >

> > Olcay ERGUN, M.Sc.

> > Computer Engineer

> > +90-532-697 37 12

> > +90-505-412 27 14

> > olcay@i...

> > Istanbul-Turkiye

> >

> >

> >

> > __________________________________

> > Discover Yahoo!

> > Get on-the-go sports scores, stock quotes, news and more. Check it

> out!

> > http://discover.yahoo.com/mobile.html

>

>

>

>

>