New Member

[Guest guest]

Hi Beth,

Hadn't checked my e-mail for a couple of weeks. Yes, I've joined the

ChristianDSParents about 2 mos. ago. Unfortunately, I've barely had time to

read the digests. I did post a few messages w/respect to Maggie's upcoming

surgery. I hope that I will soon find more time to read and be involved with

this wonderful group. Thanks for asking. Take care and God Bless.

Carla Duffy

>

>Reply-To: MosaicDSegroups

>To: <MosaicDSegroups>

>Subject: Re: new member

>Date: Sun, 8 Oct 2000 23:01:46 -0500

>

>Carla,

>

>Are you on our ChristianDSParentsegroups list? I thought so, but if

>not, I'm sure you'd love it.

>

>Beth

> new member

> >Date: Tue, 12 Sep 2000 23:46:47 -0700

> >

> >I am a mother of a beautiful, charming 19 month old daughter with MDS.

> >She has two older brothers to love and care for her, along with her

>dad.

> >She has been dealing with cardiac issues (CAVC, VSD, Tetrology of

>Fallot,

> >moderate to severe leakage of mitral valve), swallowing issues, silent

> >aspiration with stridor, reflux, slow weight gain (eats very minimal to

> >non-existent solid food; replies mostly on Pediasure) and constant

>colds

> >(caused by the aspiration) with ear infections (4 this yr.) First

> >repair done at 4 mos. old. Need more repairs. Anyone out there with

> >similar experience? She has a PT, OT, ST, Pediatrician, cardiologist,

> >surgical team, nutritionist, swallowing specialist, ENT, and an

> >audiologist. Am I missing anyone? So many issues, so little answers.

> >

> >Kris-- mom of MDS daughter

>

>

>_________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at

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>

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>

>

> Won't you please consider adding your personal story on the MDS website

>today? http://www.mosaicdownsyndrome.com And please don't forget to check

>the message board frequently...it's a great way to meet others who are

>affected by MDS, who are not on our mailing list!

>http://www.insidetheweb.com/mbs.cgi/mb778401

> *************************************************

>

[Guest guest]

Welcome to the group! Hope you'll find the group a great source of information and comfort when needed!

Angel

Mom to Tyler 9, 8/MDS, 6, Jaeda 5

[Guest guest]

Welcome Dolores,, and !

I am so glad that you found our group. We have many

members that live in your state. I hope that you will

find comfort in our group. All of us have become one

big happy family, and I welcome you to our family! If

you ever have any questions please do not hesitate to

ask. That is what we are here for.

--- Dolores wrote:

> HELLO,OUR NAMES ARE THOMAS AND DOLORES JOHNSON, OUR

> DAUGHTER RACHEL IS 6 YEARS OLD AND WAS BORN WITH

> DOWN SYNDROME 6/26/95. WE DID NOT HAVE ANY TEST

> DURING THE PREGNANCY, SO WHEN RACHEL WAS BORN,

> THAT'S WHEN WE LEARNED ABOUT THE DOWN SYNDROME. WHEN

> I WOULD LOOK AT MY LITTLE GIRL I COULD NOT SEE ANY

> SIGNS OF THIS, AS I HAVE BEEN AROUND THE DOWN

> SYNDROME WITH MY MOM AT THE HOSPITAL THAT SHE WORKED

> AT. RACHEL'S PEDIATRICIAN HAD SOME BLOOD TEST DONE,

> AND THE RESULTS CAME BACK WITH THE MOSAIC DOWN

> SYNDROME. WE WERE REFERRED TO THE EARLY CHILDHOOD

> CENTER AT DR. GERTRUDE A BARBER CENTER. RACHEL HAS

> BEEN IN THERAPY SINCE BIRTH AND IS STILL GOING.

> RACHEL WAS A VERY HEALTHY BABY AND STILL IS,

> EXCEPT FOR THE COMMON COLDS/SICKNESS. RACHEL HAS A

> MILD HEARING LOSS, AND TO THIS DATE RACHEL WILL GIVE

> US ALL TROUBLE KEEPING HER HEARING AIDS IN, OR HER

> FM SYSTEM ON. RACHEL IS VERY STRONG WILL AND IF SHE

> DOESN'T LIKE SOMETHING, SHE'LL LET YOU KNOW. RACHEL

> IS ATTENDING SCHOOL FULL DAY, THIS IS HER SECOND

> YEAR AT THE SCHOOL, AND SHE JUST LOVES IT. RACHEL

> USES THE PEC SYSTEM AND I'VE NOTICE THAT THE MORE

> VISITS SHE HAS WITH THE SPEECH THERAPIST THE MORE

> TALKING AND WORDS THAT SHE IS PICKING UP. RACHEL

> IS THE JOY OF OUR LIFES. I HAVE LEARNED SO MUCH FROM

> THERAPIST/DOCTORS, BUT RACHEL REALLY TEACHES US

> ALOT. SHE KNOWS HOW TO GET WHAT SHE WANTS. WE ARE SO

> PROUD OF HER. THOMAS AND DOLORES JOHNSON ERIE PA

>

> EMAIL - DEENELSONJOHNSON@... Get more from the

> Web. FREE MSN Explorer download :

> http://explorer.msn.com

>

=====

Kristy Colvin:President (mom to Arron 19, 16, Tim 15(mds), Stevan 14, and

Garrett 5.) The only handicap a person has, are the people around them!

__________________________________________________

Terrorist Attacks on U.S. - How can you help?

Donate cash, emergency relief information

http://dailynews.yahoo.com/fc/US/Emergency_Information/

[Guest guest]

hi peggy,

I am debbi and I also have a five year old little girl , kaitee-anne, with mds.

Kaitee will also be making her first appearance in a public school next year for kindergarten , she has been in a eci program for three years now . This has been a very controlled astosphere so how she will do in a regular open class we are gonna find out her greatest accomplishment right now and the pride just pours out over this is the abiltiy to write her first name. How can I tell she is proud of this feat.... well her name appears on the back door, the windows, the garage, the side of the automobiles..... kaitee and her pen travel everywhere together .... sharpie is her favorite .

this morning her name was on her belly, her feet, her legs..... if lost no one should have a problem finding out her name .

welcome and look forward to hearing more about your family. debbi

[Guest guest]

Welcome Peggy & Emma!

You will receive a ton of information, comments, and individual

experiences from this group. My wife and I have three girls. Our

oldest, , is going to be 12 in June and was diagnosed with MDS

when she was 16 months old. Just this past fall, found out she

" has MDS, " but her sisters still don't know. However, they often

question why she has difficulty doing certain things.

Our response to them is always " Everyone is different. Some things are

easy for some and hard for others. " Then we point out the things each

of them excell in and the topics/things they have difficulty with. So

far that has worked. We told it was HER decision as to when she

wanted her sisters to know about the MDS.

By the way, I'm having my middle name changed to " Overwhelmed " so I

know how you feel!! ;-)

Again, welcome to the IMDSA and I look forward to getting to know more

about your family in the future.

Hubby to Jaymie and stepdad to (almost 12 MDS), Jordan (9.5) and

Sydney (almost 7).

IMDSA Nat. Vice President

__________________________________________________

[Guest guest]

Peggy,

Welcome to our group! You will find that you have a

great family of supporters here and any questions you

ever have will be answered the best as possible.

Please tell us a little about yourself and your

family. Where do you live? We try to match parents

together whenever possible, so that they can have

someone to talk to face to face. How is your daughter

doing? Tell us all the things she can do and what you

feel she has trouble with. Perhaps we can help you

some way with that. You said this is her first year in

public school? Did she have other services up until

now?

I think we can all relate to your overwhelmed

feelings! Some days more than others!

Did you check out our web sites as well?

www.mosaicdownsyndrome.com and www.imdsa.com

If not please do that, you will find all kinds of

valuable information there!

Once again, Welcome to the group!

Kristy Colvin

President, IMDSA

Mom to Arron 20, 17, Tim 16 on May 19(mds),

Stevan 15 on April 16, Garrett, 6 on April 27

(3 more birthdays to go and I can breathe a bit!)

--- margaretslezak wrote:

> I have just joined this group tonight. I was

> surfing the web for

> information on MDS and found this one.

> My name is Peggy and my husband and I have a

> daughter with MDS. Emma

> is 5 years old. She is abolutely the most

> beautiful, joyous,

> challenging child! We have 2 older boys, 13 & 10.

> There is so much

> I want to say but I feel so overwhelmed and don't

> quite know where to

> begin.

> I find myself using that word alot - overwhelmed -!

> It's such an

> appropriate word, though. Overwhelmed with love and

> the everyday

> miracle of Emma, overwhelmed with questions from my

> boys trying to

> explain how and why Emma is different, overwhelmed

> with looking for

> that last bit of patience when Emma is at her

> finest!

> Right at this time in our lives, I am particularly

> overwhelmed with

> trying to make the right decision for Emma's

> schooling. She will be

> entering in the public school system this fall and

> we have begun the

> rounds of testing, observations, transition

> meetings, IEP's, MDT's,

> etc., etc.

> I would appreciate hearing from other families and

> what they have

> done.

> Thanks for the opportunity to share my thoughts. I

> didnt realize how

> much I needed to do this!

> Peggy

>

>

>

[Guest guest]

Hi Peggy:

Welcome to the group. I have an eight year old daughter named who

has mds. She is in the third grade in a regular education class. I remember

when she was getting ready to enter kindergarten and all the anxiety that

went into the testing and eventual placement. All I can say is you know your

child best. Remember that any decisions made regarding class placement and

services can always be changed. Nothing is written in stone.

I'm looking forward to hearing more about Emma and again, welcome.

ann (Mom to , mds 8 years old, brought home her report card with

all A's except for a B in art and penmenship

[Guest guest]

Peggy, Welcome to the group!!!!!!!!!You will find a wonderful supportive family here. Where are you guys from?

Glenda

Mom of Sherri, MDS-15yo and 12-spoiled rotten

[Guest guest]

Hi Peggy and welcome,

My daughter is going to be 8 year old this Sunday. She is in second grade. I was nervous about kindergarten, she was in pre school for 3 years and I wanted her to do another year of preschool but my district wouldn't do it. I wish that I would have made them do it. In kindergarten I wanted her to repeat but they said they don't hold back special ed kids. I always felt she would have been better off waiting a year before starting Kindergarten. Next year she will spend mornings in self contained then get mainstreamed back into the second grade regular class again. And she will go to art music gym and library with her 3rd grade peers. There are many things that can be done in the schools. So far with my daughter every year has been different.

As for overwhelmed I can relate. I have 3 kids my other two are a son Nick who is 14 and daughter le who is 13. I am also a single Mom. I live in New Jersey, where do you live.

Take care,

Jeanne

[Guest guest]

Hello Peggy ,Emma and family ,

Welcome to the group !!!!!

We are all here to help you,

We are all great people to get on with and help each other best we can,

I live in the UK seaside town called Blackpool and have a daughter age 9 with MDS and older children( 9 to 25 years ) this group as been so helpfull to me and i've met lots of lovely friends,

Feel free to get in touch anytime

Best wishes

Judy (mum to katie 9 ( MDS) ( Convention Chairperson and UK parent contact )

Re: new member

Peggy, Welcome to the group!!!!!!!!!You will find a wonderful supportive family here. Where are you guys from? Glenda Mom of Sherri, MDS-15yo and 12-spoiled rotten Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Hi Davina , my name is debbi and I live in maryland to. I have a 17 yr old son, a 18 year old nephew living with us, a 8 year old girl jaimee, and 5 year old kaitee-anne mds. oh yeah and one of them husband things too jimmy..... (kaitee spells dad pig ) bad mommy bad bad

[Guest guest]

Hello Debbi, it's nice to hear you live in Md also. besides this new mds

list and the other list i found on the internet, my Kyrell is my first

experience and the only person i know with down syndrome. So all this is new

to me. I'm so glad to get introduced to these groups so i can have someone

who is in the same boat as i am. My Kyrell is wonderful. He just turned 6

April 5th. By the way,that is too funny, about the dad thing. LOL.

Davina, mom to Kyron 9; Kyrell 6 mds; Kierra 4.

>From: uwittlebutt2@...

>Reply-To: MosaicDS

>To: MosaicDS

>Subject: Re: new member

>Date: Wed, 17 Apr 2002 09:35:18 EDT

>

>Hi Davina , my name is debbi and I live in maryland to. I have a 17 yr old

>son, a 18 year old nephew living with us, a 8 year old girl jaimee, and 5

>year old kaitee-anne mds. oh yeah and one of them husband things too

>jimmy..... (kaitee spells dad pig ) bad mommy bad bad

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Debbi, just wanted to ask you a question about Kaitee-anne. Is she in

kindergarten and are you comfortable with the school system. My son isn't in

inclusion but he is in kindy and i am pleased with the program he is in at

this time. I will not wait on the teachers to teach any of my kids so i try

my best and do a bit of teaching them myself at home. My kyrell is doing

wonderful and when the time comes, and i feel the school system is holding

him back on anything i will surely fight for him to be where he should. But

as for now i'm pleased, and have no concerns.

Davina, mom to Kyron 9;Kyrell 6 mds;Kierra 4

>From: uwittlebutt2@...

>Reply-To: MosaicDS

>To: MosaicDS

>Subject: Re: new member

>Date: Wed, 17 Apr 2002 09:35:18 EDT

>

>Hi Davina , my name is debbi and I live in maryland to. I have a 17 yr old

>son, a 18 year old nephew living with us, a 8 year old girl jaimee, and 5

>year old kaitee-anne mds. oh yeah and one of them husband things too

>jimmy..... (kaitee spells dad pig ) bad mommy bad bad

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hello Davina, Kyron, Kyrell, Kierra and Kyron, WELCOME TO THE

GROUP!!! It's so nice to meet new people. My name is , my

husbands name is Dave and our son is Jakob, 7 MDS. Our only child.

We live in Pennsylvania. Jakob is in a mainstreamed classroom

with learning support, speech therapy and occupational therapy. He

also has 1 hour of occupational therapy outside of school. Is Kyrell

in kindergarten or first grade? How are things going with your

school? Please feel free to E-mail me anytime. I'll be anxious to

hear more about your family! Take care! (Mom to Jakob, 7)

[Guest guest]

Hi Peggy, welcome to this wonderful family support group. I have received the help, support, advise and friendship of the most wonderful people in the world. You and your dear little girl will be at home here with all the families as we share our needs and joys and fears and strengths. God bless, Sharon Wilt mom to mds 15 and ds 13 and Tommy 10

[Guest guest]

Thanks for the warm welcome . Kyrell just turned 6 April 5th. He is in

kindergarten. Kyrell is doing wonderful at home and in school. The school

kyrell attends have half day kindy. He goes mon thru fri in the afternoon.

He will be in first grade next year, FULL TIME!!! YIPPY. All three kids will

be in school full time next year. good for me. I can get a little break.

lol. Some schools here in MD have half day kindy and some have all day

kindy. Kyrell's speech really improved and he do receive one on one speech

therapy once a week. The class as a group gets a half hour speech lesson

once a week also. So far i'm pleased with Kyrell's school. Everything is

going well and he is doing great. I do what i can and teach my kids a little

at home also because i don't want to leave it all up to the school system. I

believe kids can really learn from a GOOD teacher who has his or her heart

into teaching and someone who really wants to reach and teach a child. The

first sign i see a class or a teacher is not at Kyrell's benefit, i will

surely fight to get things right but for now, everything is good.

>

>Reply-To: MosaicDS

>To: MosaicDS

>Subject: Re: New member

>Date: Wed, 17 Apr 2002 22:47:11 -0000

>

>Hello Davina, Kyron, Kyrell, Kierra and Kyron, WELCOME TO THE

>GROUP!!! It's so nice to meet new people. My name is , my

>husbands name is Dave and our son is Jakob, 7 MDS. Our only child.

>We live in Pennsylvania. Jakob is in a mainstreamed classroom

>with learning support, speech therapy and occupational therapy. He

>also has 1 hour of occupational therapy outside of school. Is Kyrell

>in kindergarten or first grade? How are things going with your

>school? Please feel free to E-mail me anytime. I'll be anxious to

>hear more about your family! Take care! (Mom to Jakob, 7)

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi Davina, welcome to a most wonderful group. Where do you live in land? I am just over land line in York, Pa area. My daughter has mds and she is 15

[Guest guest]

Davina,

Hello and Welcome to our Group! Where in land do

you live? We do have some members there in land.

We try to connect parents that live close to

eachother, although this is often hard to do. Tell us

all about your family and especially Kyrell. Please

make sure that you check out our web sites!

www.mosaicdownsyndrome.com and www.imdsa.com

Any questions you have, please feel free to ask!

And once again, Welcome to our Family!

Kristy Colvin,

President, IMDSA

Mom to Arron 20, 17, Tim 16 on May 19(mds),

Stevan 15, Garrett 6 on April 27

2 birthdays to go! Then I can breathe till October!

LOL

--- deevee2073 wrote:

> Hello group.i'm a new member and i just wanted to

> introduce myself.

> My name is Davina and i am a mother of three. Kyron

> 9; Kyrell 6mds;

> Kierra 4. We live in land. Oh i can't forget my

> husband,Kyron

> also. Can't wait to read some of the posts.

>

>

>

[Guest guest]

Hi Davina, I'm and.....we live in land too. Just like Debbie

and her " husband thing " (bad Debbie, bad, bad). I'm the proud parent of

Matt (7, mds) and (9, pts -- parent testing disorder), oh yeah and a

wife, wonderful, sweet, patient Sharon. Look forward to hearing about you

and yours.

[Guest guest]

Welcome Davina, I'm glad you found us with no trouble. I look forward to

getting better aquainted w/ your crew. Dive right in. (4months) is

my child w/ mds. I also have two other children 15 & 11.

And my husband is Ronnie. I don't post many times that I would like to because

of time. But I always look forward to reading what others have written.

Hope

deevee2073 wrote:

Hello group.i'm

a new member and i just wanted to introduce myself.

My name is Davina and i am a mother of three. Kyron 9; Kyrell 6mds;

Kierra 4. We live in land. Oh i can't forget my husband,Kyron

also. Can't wait to read some of the posts.

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

He did three years of pre school in

the land Public School System. I think the program is great (at least

in our area). The teachers were all speech pathologists and one of his

biggest problems was with speech.

we are in anne arundel county md and the school program is great here too. kaitee has been in the infant toddler program and then the eci program.... she started going to school at 2.5 years old . the teachers and therapist are the greatest!! She has come a very long way in the last couple years ..... she will be going to kindergarten next year ....in the public and we are waiting to see how she does to make up any IEP for her....debbi

[Guest guest]

Debbi:

Glad to hear that. Do they have Extended Day in AA County? Matt really did well in school and he liked going. I liked how they pulled him out of special K to the regular K classes to get him use to it then sending him to regular K full time. Good luck with your IEP, ours have gone very well so far.

this was our original plans in november for her to attend the eci kindergarten in the morning and slowly transsion into the regular kindergarten program. in march just before her iep was due the teacher asked me how I felt about her going to regular kindergarten....in her home school.... the kindergarten teacher that came into observe the kids that were ready to leave the eci program was totally attracted to kaitee and couldnt understand why she wasnt being sent to her home school too.... I was open to the ideal, so we set up a meeting..... at the meeting we discussed the weakness and strengths of kaitee, and decided we couldnt really do anything more then set goals for her to reach and that the first few months will be a period of adjustment for her, then we put a regular IEP into place....kaitee is going from a closed room setting to a open highly sturctrued setting.... there will be more distractions (more escape routes ) there will be more noise (kaitee is also hearing impaired and uses hearing aides ) and she is vision impaired.... corrected to a point with glasses... but given a challenge and kaitee will meet it .... so we are going to see how she adjusts and take it from there.... we can always replace her ino another school setting if she doesnt adjust well.

[Guest guest]

Davina:

Matt is 7 and in 1st Grade. He did three years of pre school in

the land Public School System. I think the program is great (at least

in our area). The teachers were all speech pathologists and one of his

biggest problems was with speech. When he started at age 3, you could only

understand a handful of words. By the end of three or four months in

school, he was talking in 7 word sentences. When he was in Kindergarten,

they pulled him out for reading (to the regular K class) the first part of

the year then he went to the regular K class the entire last part. He was

also in EDC, which is an extended day class so he was in school all

day. That was a great program as well, for at risk kids. He is in regular

1st grade this year and doing GREAT. We are in Calvert County just for

your information. I agree with the teaching at home. It certainly

helps! Good luck with your schooling.

Sharon (mother to Matt 7, MDS; and 9)

>My son isn't in

>inclusion but he is in kindy and i am pleased with the program he is in at

>this time. I will not wait on the teachers to teach any of my kids so i try

>my best and do a bit of teaching them myself at home.

[Guest guest]

Debbi:

Glad to hear that. Do they have Extended Day in AA County?

Matt really did well in school and he liked going. I liked how they

pulled him out of special K to the regular K classes to get him use to it

then sending him to regular K full time. Good luck with your IEP,

ours have gone very well so far.

Sharon (mother to Matt 7, MDS; and 9)

she will be going to

kindergarten next year ....in the public and we are waiting to see how

she does to make up any IEP for

her....debbi

[Guest guest]

Hi Peggy:

Sorry this is late. I am trying to catch up on my e-mails. I have

nothing but praise for the public school system in land. The

structured environment of the school was great for Matt, he adjusted very

well to it. He acted out a lot as a toddler but we found out that was

mostly due to his speech problems, us not being able to understand him and

his getting frustrated with that. Between school and the Hanen program,

that issue was mostly resolved. He still has his moments but they aren't

related to not being understood!!! ;>) Anyway, glad to have you as part of

the group.

Sharon (mother to Matt; 7, MDS; and 9)

> She will be

>entering in the public school system this fall and we have begun the

>rounds of testing, observations, transition meetings, IEP's, MDT's,

>etc., etc.