mds

[Guest guest]

Hello everyone! I received this email from nne Freiwald and thought she may benefit from the groups concerns. I am sure you can email her privately. I am going to send her a copy of this email so she knows I have forwarded to everyone! Hope we can give her a good topic!

THANKS,

LINDA BEETS (MOMMY TO KARLEE!)

In a message dated 7/7/2001 11:48:56 PM Eastern Daylight Time, Freiwald writes:

Hi, my name is nne Freiwald, and I am a doctoral student at Nova Southeastern University. I'm a speech pathologist, and I'm doing research in the area of Down syndrome. I would like to know if there is anyone in your organization who has a specific topic or concern that they feel would make an interesting research project.

I have not yet picked out my topic, but I know it will be in the area of Down syndrome. If you or anyone in your organization has a specific concern, question, or idea that they would like to see research done on, please let me know as soon as possible. You can e-mail me at

juliefreiwald@....

Thankyou,

nne Freiwald M.S. CCC-SLP

Certified and licensed speech-language pathologist

Hi, my name is nne Freiwald, and I am a doctoral student at Nova

Southeastern University. I'm a speech pathologist, and I'm doing research in

the area of Down syndrome. I would like to know if there is anyone in your

organization who has a specific topic or concern that they feel would make an

interesting research project.

I have not yet picked out my topic, but I know it will be in the area of Down

syndrome. If you or anyone in your organization has a specific concern,

question, or idea that they would like to see research done on, please let me

know as soon as possible. You can e-mail me at juliefreiwald@....

Thankyou,

nne Freiwald M.S. CCC-SLP

Certified and licensed speech-language pathologist

[Guest guest]

Hello everyone,

My name is ,I am 39 years old and 2 kids,

boys.The oldest is 8 years old, he's healthy,nice and

smart boy, he's called Andrei and it is a school.The

baby called Valentin-Ciprian, he is 1 year and he was

diagnostical with DS at birth. We made him all tests

witch could be done in my country , and the result was

: MDS.

I was told by the doctors that my baby is

physically health and there are no damages on vitals

organs.Psychologically, none doctors are not be able

to tell me about his future evolution, and I am

understanding why.

Generally, Ciprian is a nice,sweet child,and grow

up almost normal.He eats well,he crowl,talk litle

words (mom, dad,papa....), he can sit verry good and

he walkes with my help on pull up on furniture.Alone

he's not walking, but he are 1 year old ( birth data :

March,6,2001).He are time to walk.He play with toys.We

try to grow Ciprian up normal,exactlly like his oldest

brother, like a normal child.

So,that it is a short story about me and my

sons.

I'm verry sorry but I don't speek English verry

well.I speek romanian and if is somebody witch know my

language, I will be happy.I don't think so, but I try.

Warm regards,

__________________________________________________

[Guest guest]

Welcome to our group........your English is good. Glenda

Mom of Sherri, 15 MDS and 12, Spoiled Rotten

[Guest guest]

Hi ,

I am glad you joined. I always said your english was great. And the

photo of you both was beautiful. It looks like Ciprian had a lovely

birthday. I will enjoy more chats in the future.

(mum to scott 4mds, and emily 2)

[Guest guest]

,

Your English was just fine. My son Brannon will be 2 yrs old on the

April 20th and he still cannot walk.

Right now he is taking therapy to help him with it. Is your child

taking any type of therapy? Do they offer it there in your country?

We found out Brannon had MDS when he was 19 mths old. I feel if we

found out he had MDS when he was born he would be doing things much

sooner because we would have had him started on therapy at DAY 1.

Don't worry about your child. He will start walking when he is ready.

I have to say that to myself everyday because I get so fustrated

seeing other children Brannon's age or younger than him walking and

he can't. I feel sorry for him because the other kids walk over him

because he has to crawl to get to where he's going. I just pray each

night that he will walk soon. Your child is 1 yrs old and I feel

he'll be walking soon. If you feel their is a problem maybe you

should get him a physical therapist that's if you can get one. I hope

that helps some.

a mom to Bran w/mds and le

>

> Hello everyone,

>

> My name is ,I am 39 years old and 2 kids,

> boys.The oldest is 8 years old, he's healthy,nice and

> smart boy, he's called Andrei and it is a school.The

> baby called Valentin-Ciprian, he is 1 year and he was

> diagnostical with DS at birth. We made him all tests

> witch could be done in my country , and the result was

> : MDS.

> I was told by the doctors that my baby is

> physically health and there are no damages on vitals

> organs.Psychologically, none doctors are not be able

> to tell me about his future evolution, and I am

> understanding why.

> Generally, Ciprian is a nice,sweet child,and grow

> up almost normal.He eats well,he crowl,talk litle

> words (mom, dad,papa....), he can sit verry good and

> he walkes with my help on pull up on furniture.Alone

> he's not walking, but he are 1 year old ( birth data :

> March,6,2001).He are time to walk.He play with toys.We

> try to grow Ciprian up normal,exactlly like his oldest

> brother, like a normal child.

> So,that it is a short story about me and my

> sons.

>

> I'm verry sorry but I don't speek English verry

> well.I speek romanian and if is somebody witch know my

> language, I will be happy.I don't think so, but I try.

>

> Warm regards,

>

>

> __________________________________________________

>

[Guest guest]

,

Welcome to the group! I'm quite impressed with your English, it can be a confusing language, but you are perfectly understandable!

I'm not sure if we have any other families from Romania, but we do have quite the cultural mix here, America, the UK, Australia, Ireland, etc.

Sounds like you have 2 great little boys... Look forward to getting to know you better!

Angel, California, USA

mom to , 9, MDS/Hirschsprung's Disease

Tyler 10, 7 and Jaeda 5

[Guest guest]

Dear ,

Welcome, my name is Kirsty and we have 2 sons also. on is 5 and just started school and mds is 3 and will start pre school end of year. We live in Australia. We have treated just the same as his older brother, his biggest problem is his speech but it is coming. We found that learns alot from on and other older children, some things he probably should not learn but it is all part of growing up. We found out about when he was 10 days old and in the last 3 years had not found out much info until we found the mosaic down syndrome site. It is a great place to find out lots of information and everyone has been so nice and helpful. It is great to have such a lovely support network. Hope all is going well

Regards

Kirsty

mds

Hello everyone, My name is ,I am 39 years old and 2 kids,boys.The oldest is 8 years old, he's healthy,nice andsmart boy, he's called Andrei and it is a school.Thebaby called Valentin-Ciprian, he is 1 year and he wasdiagnostical with DS at birth. We made him all testswitch could be done in my country , and the result was: MDS. I was told by the doctors that my baby isphysically health and there are no damages on vitalsorgans.Psychologically, none doctors are not be ableto tell me about his future evolution, and I amunderstanding why. Generally, Ciprian is a nice,sweet child,and growup almost normal.He eats well,he crowl,talk litlewords (mom, dad,papa....), he can sit verry good andhe walkes with my help on pull up on furniture.Alonehe's not walking, but he are 1 year old ( birth data :March,6,2001).He are time to walk.He play with toys.Wetry to grow Ciprian up normal,exactlly like his oldestbrother, like a normal child. So,that it is a short story about me and mysons. I'm verry sorry but I don't speek English verrywell.I speek romanian and if is somebody witch know mylanguage, I will be happy.I don't think so, but I try. Warm regards, __________________________________________________

[Guest guest]

Debbi,

Great! Any info you can find will be apprieciated! It

is great to know that you have such a wonderful

teacher! It makes all the difference in the world!

Kristy

--- uwittlebutt2@... wrote:

> In a message dated 4/10/2002 12:52:36 PM Eastern

> Daylight Time,

> imdsapresident@... writes:

>

>

> > Concider yourself very lucky if you have

> therapists at

> > your disposal! If any of you think you can get

> > instructional papers on Speech, Physical, or

> > Occupational therapy that you think would help

> these

> > parents, please let me know. I am looking for

> stuff

> > that they can do themselves at home with thier

> child

>

> I will send a note to kaitee teacher and find out if

> there are any web sites

> that might be able to offer them a way of working

> with their child and then

> get the stuff printed up that will help them .....

> Kaitee's teacher has become very interested in mds

> and has spent a lot of

> time on the website.... in terms of teachers this

> one is the best kaitee has

> had work with her yet..... debbi

>

__________________________________________________

[Guest guest]

Hi Kristy, Angel,

Kirsty, a & Glenda

Thank everyoane,for your kind messages.

In my country ,there are no Association in this

moment witch take care of the children with DS or mds,

and no familly witch I can talk about this

problemme.The address that I took from the Internet

and the one that Kristy gave it to me, are no more

valid.There are many parents in my situation (I hear)

but we don't know eachother.

In Buc.it's only a nursery school witch has a

programme to help these childrens.There is a doctor

who is trying to help me with a programme.Because I

have interested and I knock at many doors'doctors,I am

now going at a psyhologist doctor once a mounth ,but

she can not gime me a stimulation programme witch I

need ,because she is not able.

All that is important to help my baby.I'm not

disperate, but I want to do everything for him.I try

everywhere to inform miself to find out more things

witch I can do for Ciprian.

I don't have any kind of therapists (

Speech,Phisical, Occupational therapy......).

I teach Ciprian everything I think is necessary,

by miself.

So that I ask for your help.

( Andrei- 8, Ciprian-1 mds, mom )

> >

[Guest guest]

Dear Andriana,

We are just starting school holidays but when they go back i will ask our society for some notes on their classes for you. They are quite good and give differnet activities to do. We found some helpful and some too basic but it is a start. We have our first class on 3rd May so we will email after that. We also found good old playing with lots of toys was great.

Take care

Regards

Kirsty on 5 and 3 mds.

Re: Re: mds

Hi Kristy, Angel, Kirsty, a & Glenda Thank everyoane,for your kind messages. In my country ,there are no Association in thismoment witch take care of the children with DS or mds,and no familly witch I can talk about thisproblemme.The address that I took from the Internetand the one that Kristy gave it to me, are no morevalid.There are many parents in my situation (I hear)but we don't know eachother. In Buc.it's only a nursery school witch has aprogramme to help these childrens.There is a doctorwho is trying to help me with a programme.Because Ihave interested and I knock at many doors'doctors,I amnow going at a psyhologist doctor once a mounth ,butshe can not gime me a stimulation programme witch Ineed ,because she is not able. All that is important to help my baby.I'm notdisperate, but I want to do everything for him.I tryeverywhere to inform miself to find out more thingswitch I can do for Ciprian. I don't have any kind of therapists (Speech,Phisical, Occupational therapy......). I teach Ciprian everything I think is necessary,by miself. So that I ask for your help. ( Andrei- 8, Ciprian-1 mds, mom ) > >

[Guest guest]

Woodbine House publishes a number of books with home exercises for children with Down syndrome in the areas of gross motor skills, fine motor skills, and communication skills, among other topics. You'll find these at www.woodbinehouse.com . Hope this helps!

Beth

Re: Re: mds

unfortunately does not have therapy in hercountry. I have been speaking with her for a few weeksand am tring desperately to find any information ontherapy that I can. I am currently waiting on somethings in the mail that may help. Many of our memberslive in countries that do not accept special needskids and do not offer any help to them at all.Concider yourself very lucky if you have therapists atyour disposal! If any of you think you can getinstructional papers on Speech, Physical, orOccupational therapy that you think would help theseparents, please let me know. I am looking for stuffthat they can do themselves at home with thier child.All age levels are needed.Thanks!Kristy--- xax wrote:> ,> > Your English was just fine. My son Brannon will be 2> yrs old on the > April 20th and he still cannot walk. > Right now he is taking therapy to help him with it.> Is your child > taking any type of therapy? Do they offer it there> in your country?> We found out Brannon had MDS when he was 19 mths> old. I feel if we > found out he had MDS when he was born he would be> doing things much > sooner because we would have had him started on> therapy at DAY 1.> Don't worry about your child. He will start walking> when he is ready.> I have to say that to myself everyday because I get> so fustrated > seeing other children Brannon's age or younger than> him walking and > he can't. I feel sorry for him because the other> kids walk over him > because he has to crawl to get to where he's going.> I just pray each > night that he will walk soon. Your child is 1 yrs> old and I feel > he'll be walking soon. If you feel their is a> problem maybe you > should get him a physical therapist that's if you> can get one. I hope > that helps some.> > a mom to Bran w/mds and le> > > > > > > > Hello everyone,> > > > My name is ,I am 39 years old and 2> kids,> > boys.The oldest is 8 years old, he's healthy,nice> and> > smart boy, he's called Andrei and it is a> school.The> > baby called Valentin-Ciprian, he is 1 year and he> was> > diagnostical with DS at birth. We made him all> tests> > witch could be done in my country , and the result> was> > : MDS.> > I was told by the doctors that my baby is> > physically health and there are no damages on> vitals> > organs.Psychologically, none doctors are not be> able> > to tell me about his future evolution, and I am> > understanding why.> > Generally, Ciprian is a nice,sweet child,and> grow> > up almost normal.He eats well,he crowl,talk litle> > words (mom, dad,papa....), he can sit verry good> and> > he walkes with my help on pull up on> furniture.Alone> > he's not walking, but he are 1 year old ( birth> data :> > March,6,2001).He are time to walk.He play with> toys.We> > try to grow Ciprian up normal,exactlly like his> oldest> > brother, like a normal child.> > So,that it is a short story about me and my> > sons.> > > > I'm verry sorry but I don't speek English> verry> > well.I speek romanian and if is somebody witch> know my> > language, I will be happy.I don't think so, but I> try.> > > > Warm regards,> > > > > > __________________________________________________> >

[Guest guest]

Dear Barb, I sent you an e-mail attachment (A very touching story)

and I wanted to tell you so you won't be afraid to open this. You

will not believe this story. Faust

[Guest guest]

Thank You , It was a wonderful story, I opened it and read it. I usually do delete everything which is a fwd attachment. I don't want to hear my darling husband remind me of how "dumb" it is to open attachments since the latest craze in viruses is that they self forward to all people in your address book! I am glad you told me to go ahead and open it. Thanks again. Barb Re: MDS Dear Barb, I sent you an e-mail attachment (A very touching story)and I wanted to tell you so you won't be afraid to open this. Youwill not believe this story. Faust

[Guest guest]

, Thanks for the info. sounds a lot like Jakob. If

someone teases him, I get upset, but he says " they are my friends " .

God works in mysterious ways. I truely believe this is His way of

helping our kids cope. Take care! (Mom to Jakob,7)

[Guest guest]

Hi everyone, Has anyone heard from Darlene about s surgery? I

have been thinking about her all week. Please let us know.

(Mom to Jakob, 7)

[Guest guest]

Hi Darlene, I was so happy to see your post, I have been wondering about you all week. I know you weren't near a computer and your place was with . I am so glad she is doing so well. We will still keep all of you in our prayers until is fully recovered. Please give her a hug from us. Take care! (Mom to Jakob,7) RE: Re: MDS Hello Everyone,Thank you for all your thoughts and prayers. 's surgery went verywell and she seems to be recovering quickly. The doctors let us out of thehospital yesterday and I couldn't have had a better Mother's day gift.Happy belated Mother's Day to everyone. Last week seems to have been a busyweek as I have 143 MDS messages - it will take me a while to go though themall.Again - thank you for all your thoughts and prayers,Darlene & - Parents to (5) and (3)-----Original Message-----From: mommy17744 Sent: Sunday, May 12, 2002 4:43 PMTo: MosaicDS Subject: Re: MDS Hi everyone, Has anyone heard from Darlene about s surgery? Ihave been thinking about her all week. Please let us know. (Mom to Jakob, 7)Won't you please consider adding your personal story on the MDS websitetoday? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

2nd REQUEST

Hello Everyone:

I received this email from a spanish family and I can't make heads or tails from it! I am sending it to the group and also some other families who are not on the group to see if anyone can help them.

If anyone out there knows spanish, please respond to this email asap. Please let me know if you have responded!

Thanks,

Beets, (MDS List Facilitator!)

Mi nombre es Recalde de Uruguay , tengo un hijo de cuatro meses de

edad, Julián, que presenta Síndrome de Down tipo Mosaico, según el estudio

de genético. Le hemos hecho todos los estudios de rutina (cardíacos, eco de

cabeza, eco de cadera, otorrino, oculista,etc) y nos ha dado todo normal

inclusive lo llevamos una vez por mes a la fisiatra y nos comenta que va

dentro de los carriles de un niño sin sindrome. Nuestra pregunta es que

conducta seguir, si bien está muy controlado con la pediatra de cabecera y

todos los especialistas. No nos saben responder a ciencia cierta sobre el

Mosaicismo y su pronóstico así como de si nosotros debemos realizarnos un

estudio genético . Desde ya muy agradecido y disculpen el no haber escrito

en ingles pues no lo domino muy bien si es necesario lo intentaré. Estaremos

en contacto, sin mas le saluda

Recalde

crecalde@...

[Guest guest]

Anyone out there able to do better than me with my few years of spanish in high school??

What I can make out, he has a 4 month old son with Mosaic Downs, but no one where he lives seems to know how to respond to the mosaicism. I think he is saying that they have done all the routine examinations on the baby, that they would any other child... I can't quite make out what his question is exactly though... seems to be developmentally or behaviorally related, not physically. And, that he's not able to write in English.

I wonder if he's able to read English though? hmm.

Anyone speak spanish?

Angel

Mom to

[Guest guest]

I will get to reply as soon as he gets here. He grew up in

Ecuador and speaks fluent Spanish.

Anyone

out there able to do better than me with my few years of spanish in high

school??

Sharon (mom to Matt 7, MDS and Chris

9)

[Guest guest]

Angel and Sharon:

Thanks guys I appreciate your help and certainly I can't respond! #$@( &

#% &

Sharon, I had in mind, but had not looked up his email as of

yet, I thought the group would be faster! I was right!!!!

Thanks,

Beets

[Guest guest]

,

I will use my translator and see what I come up with.

Kristy

--- Mommy706@... wrote:

>

>

>

[Guest guest]

I sent the letter to my cousin. She knows Spanish pretty good.

I'll let you know if she was able to translate it.

a

> >

> >

> >

[Guest guest]

Dear , Ask Barb, I know she knows Spanish also. (Mom to Jakob,7) Re: Fwd: MDS Angel and Sharon: Thanks guys I appreciate your help and certainly I can't respond! #$@( & #% & Sharon, I had in mind, but had not looked up his email as of yet, I thought the group would be faster! I was right!!!!Thanks, Beets

[Guest guest]

Hi ,

My fiance is from Puerto Rico and is fluent in spanish. I just today read the email. I will print it out for him and have him translate it.

Jeanne

[Guest guest]

Hi ,

It is very hard to translate spanish to english. He has read the email and basically they have the mds diagnosis, they went to many doctors for tests and the baby is healthy. They want to know what to expect and how to handle it. The doctors do not know much about Mosaic ds. So it sounds like how the rest of us were when we found out that they just want to learn more about MDS.

He can translate if they write again.

Jeanne