RE: Welcome to MosaicDS@onelist.com

[Guest guest]

Hi

This is the first list I've ever subscribed to so I hope I am doing this

right. My name is ann and I have a daughter named who will be

six years old in September. was diagnosed by amniocentesis which

indicated that about 50% of her cells had the extra 21st chromosome. After

she was born her blood tested with 11% having the extra ds cells. She

started early intervention at 2 months and has always done very well. Last

year she attended a regular ed kindergarten class and did quite well keeping

up academically. In September she will be starting first grade, also in a

regular ed class, and she will be getting speech services.

I look forward to meeting all of you and sharing our stories and experiences.

ann (Mom to , almost 6 years old)

[Guest guest]

Bree -

Can I ask that posts be relevant to the list? I have been on the DS list

for about 2 months and I find it very aggravating that you get 20 or so

posts that say LOL or TeeHee. If a person wants to make those comments

can't they make them directly to the sender? I get about 100 emails a day

from the DS list and only 5-10 are actually information about DS! Just my

thoughts -

Darlene

(mom to 6 months - MDS & 2.5)

> [MosaicDS] Welcome to MosaicDSonelist

>

> Hello,

>

> Welcome to the list. My name is Bree, and I am the listowner for MDS! I

> am the mommy of (age 11), (age 9), (9-year-old

> step-daughter) and my precious (born July 17th, 1999), diagnosed

> with MDS.

>

> Please take a moment to review (and save) this message.

>

> List Guidelines

>

> 1)Please change the subject heading when the subject refers to something

> else.

>

> 2)Please delete most of the old message, and keep only what you are

> responding to, as it is a royal pain for the people on the digest. Please

> set the text you are including separately from your own response with

> either << >>, or anything else creative.

>

> 3)All questions, comments and suggestions come directly to me (privately),

> not group-level.

>

> 4)No flaming (private or group level) or spamming allowed. This will

> result in immediate removal from the list!

>

> 5)I ask that ALL members be treated with respect, as we each come from

> different backgrounds and have very different personal levels of

> sensitivity.

>

> 6)If at all possible, please use a short signature line in all your

> e-mails to the group, including your child/children's name and age. This

> will help the newcomers to our list remember who you are!

>

> 7)Have fun and enjoy the list. We are here to share and learn from each

> other's own experiences!

>

>

[Guest guest]

In a message dated 8/18/99 9:30:10 PM Central Daylight Time,

MosaicDS-owneronelist writes:

<< Hello,

Welcome to the list. My name is Bree, and I am the listowner for MDS! >>

Thank you for the Welcome!

<< Oh, please don't forget to send out a short introduction of yourself to

the group, if you haven't done so already! I look forward to getting to know

you better, as well as your precious child/children!

>>

In April, we received word of the birth our 6th Great Grandchild, and in May

a letter followed that Brady had MDS. It was a new term for us, and we

searched the Internet for answers. On a message board, we asked for help and

received a few wonderful responses with encouraging remarks from mothers of

MDS children. After our initial devastation, we feel so much better knowing

what to expect and that Brady will most likely do just fine. We are the

parents of a cerebral palsied daughter, Robin, now age 44. Having experienced

a severely handicapped child, we were so concerned for our granddaughter when

her Brady was diagnosed, but we know now that she, too, along with her

husband and other two children are a special family to have been chosen for

his care and upbringing. Two years ago, she had a miscarriage; I wrote a poem

to her which I had hoped would ease her pain and sorrow then, and a second

poem when Brady was born. If you wish I can e-mail copies.to you.

Loves ya, Dot.

[Guest guest]

Bree:

Hi, my name is and I am Karlee's mother. She was born with MDS on

4/27/99 @ 3:13 p.m. We did not know of her diagnosis until she was born. As

you all know, my husband and I have been in a whirlwind ever since. Just

trying to find out anything about it has been a nightmare within its self.

Fortunately, we are doing better now. My husband has not been much on

participating with others regarding this. He says he would contact others if

everything was " normal " , so he isn't going to now. He says just let her lead

the way and we will deal with what needs to be done when it needs to be done!

I would like to be like that, but I think the mother in me kicked in and I

have to contact others. That's why I'm here!

Karlee doesn't have any health problems. I am giving her NutriveneD vitamin

therapy. (This is really a pain!) Her neck seems a little floopy so I

insisted on getting pt. Her therapist indicates that her development is more

toward typical development rather than ds development. I have seen a speech

therapist and she indicates she has no abnomalities with her mouth or tongue!

Great Huh! She is laughing and cooing now and that has made all the

difference in the world. Talking with Luanne Eckert has really helped also.

Several of you may have heard from me. I have been so confused by the whole

thing. I have searched for an answer on " how mild can mds be? " I have tried

to contact a mother of a child that is in a nearby community that has mds.

She has no delays. She is a cheerleader for the middle school she attends.

That seems pretty mild!! Then I hear others say their children have several

delays and that doesn't seem so mild. I have finally came to the conclusion

that I will know what Karlee needs when the time comes. That is my biggest

battle at this point. Acceptance and moving forward is hard because of the

unknown. When she smiles and coos it makes the worry seem like nothing!

Sorry for the blabbing. I could go all day as you can imagine. Thanks for

allowing me to be a part of this list. From what I can tell mds is basically

unheard of anyway. I didn't know of this either until Karlee was born.

Please send any advise you can. Thanks,

[Guest guest]

MOMMY706@... wrote:

>

> From: MOMMY706@...

Hi , Welcome!! I know how you feel about being in a whirlwind, but

I assure you it will all pass. You will know that your sweet baby is

just a regular little girl, and needs all the love and support she can

get from all her family. She will thrive and grow, and come into her own

before your eyes. She will sing and laugh and be a happy child.

Everything she does will be a milestone and a joy for you and your

husband to share with her. Your job as her chosen parents is to help her

reach her goals in life. It will be a struggle from time to time, but

you will be suprised how much strength you have. Keep your support

around you, and stay focused. Like I said, I felt just like you did on

May 7, 1993. I thought how could this have happened to me. I mourned my

son for many days following, but decided I had to step up and deal with

it. You should see my sweet Cody now. He is everything to us, we laugh

at him all the time. He has such a personality and he loves music. He

loves the drums so much, that we bought him a set for Christmas!!!!Hes

in heaven!!! Just know we all know what your going through, and we can

be some of your support so keep us posted on Karlee!!! Misty Brown

>

> Bree:

>

> Hi, my name is and I am Karlee's mother. She was born with MDS on

> 4/27/99 @ 3:13 p.m. We did not know of her diagnosis until she was born. As

> you all know, my husband and I have been in a whirlwind ever since. Just

> trying to find out anything about it has been a nightmare within its self.

> Fortunately, we are doing better now. My husband has not been much on

> participating with others regarding this. He says he would contact others if

> everything was " normal " , so he isn't going to now. He says just let her lead

> the way and we will deal with what needs to be done when it needs to be done!

> I would like to be like that, but I think the mother in me kicked in and I

> have to contact others. That's why I'm here!

> Karlee doesn't have any health problems. I am giving her NutriveneD vitamin

> therapy. (This is really a pain!) Her neck seems a little floopy so I

> insisted on getting pt. Her therapist indicates that her development is more

> toward typical development rather than ds development. I have seen a speech

> therapist and she indicates she has no abnomalities with her mouth or tongue!

> Great Huh! She is laughing and cooing now and that has made all the

> difference in the world. Talking with Luanne Eckert has really helped also.

> Several of you may have heard from me. I have been so confused by the whole

> thing. I have searched for an answer on " how mild can mds be? " I have tried

> to contact a mother of a child that is in a nearby community that has mds.

> She has no delays. She is a cheerleader for the middle school she attends.

> That seems pretty mild!! Then I hear others say their children have several

> delays and that doesn't seem so mild. I have finally came to the conclusion

> that I will know what Karlee needs when the time comes. That is my biggest

> battle at this point. Acceptance and moving forward is hard because of the

> unknown. When she smiles and coos it makes the worry seem like nothing!

> Sorry for the blabbing. I could go all day as you can imagine. Thanks for

> allowing me to be a part of this list. From what I can tell mds is basically

> unheard of anyway. I didn't know of this either until Karlee was born.

> Please send any advise you can. Thanks,

>

> ---------------------------

[Guest guest]

, Welcome to the list. I have a daughter thats 11 months old and on

Nutreve-D. There is a group list for people who have there children on

Nutritional Supplements. Email me privately and I will give the address to

you. It has really helped me out. Gotta go, lightning storm heading in

better get off. EEEKS that was to close....by

Kari

Mom to Jenna 11 months

>From: MOMMY706@...

>Reply-To: MosaicDSonelist

>To: MosaicDSonelist

>Subject: Re: [MosaicDS] Welcome to MosaicDSonelist

>Date: Tue, 24 Aug 1999 11:37:30 EDT

>

>From: MOMMY706@...

>

>Bree:

>

> Hi, my name is and I am Karlee's mother. She was born with MDS

>on

>4/27/99 @ 3:13 p.m. We did not know of her diagnosis until she was born.

>As

>you all know, my husband and I have been in a whirlwind ever since. Just

>trying to find out anything about it has been a nightmare within its self.

>Fortunately, we are doing better now. My husband has not been much on

>participating with others regarding this. He says he would contact others

>if

>everything was " normal " , so he isn't going to now. He says just let her

>lead

>the way and we will deal with what needs to be done when it needs to be

>done!

> I would like to be like that, but I think the mother in me kicked in and

>I

>have to contact others. That's why I'm here!

>Karlee doesn't have any health problems. I am giving her NutriveneD

>vitamin

>therapy. (This is really a pain!) Her neck seems a little floopy so I

>insisted on getting pt. Her therapist indicates that her development is

>more

>toward typical development rather than ds development. I have seen a

>speech

>therapist and she indicates she has no abnomalities with her mouth or

>tongue!

> Great Huh! She is laughing and cooing now and that has made all the

>difference in the world. Talking with Luanne Eckert has really helped

>also.

>Several of you may have heard from me. I have been so confused by the

>whole

>thing. I have searched for an answer on " how mild can mds be? " I have

>tried

>to contact a mother of a child that is in a nearby community that has mds.

>She has no delays. She is a cheerleader for the middle school she attends.

>That seems pretty mild!! Then I hear others say their children have

>several

>delays and that doesn't seem so mild. I have finally came to the

>conclusion

>that I will know what Karlee needs when the time comes. That is my biggest

>battle at this point. Acceptance and moving forward is hard because of the

>unknown. When she smiles and coos it makes the worry seem like nothing!

>Sorry for the blabbing. I could go all day as you can imagine. Thanks for

>allowing me to be a part of this list. From what I can tell mds is

>basically

>unheard of anyway. I didn't know of this either until Karlee was born.

>Please send any advise you can. Thanks,

>

>---------------------------

[Guest guest]

On 30 Sep 1999 18:41:22 -0000, MosaicDS-owneronelist wrote:

*** how do you post a message to the board???

.

>

>

>

>

> Thanks,

> Bree

> MDS List Owner

> mailto:njboxers@...

>