Re: Welcome April and Tony!

March 1, 2008

Welcome, April! I have a 29-year-old daughter with Mosaic Down syndrome (but

we didn't know she has mosaicism until she was 25) and a granddaughter with

Down syndrome who is the same age as your Tony, 4 months.

Everyone is scared to some degree at first, so that's " normal. " Yep,

society can be really cruel, but mostly they are just ignorant, and some are

even

quite well-meaning when they say and do things that hurt or offend us. That's

how we develop our hyperactive-sense-of-humor! This is the place to share it

all, because the IMDSA folks are all on your side and really happy that Tony is

here.

And my goodness, there are so many people here who know so much that you need

never wonder about any aspect of your wonderful future with Tony!

You've already started to follow the best advice I was given when my baby was

born: " Take her home and love her. "

Judie, mom to Christi, 29 , and lots more

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

Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

March 1, 2008

Welcome April and Tony!!! April I think you will find almost everyones

experience is different with mds except for one thing, they are very sweet and

loving children. My daughter is 14 months old and I only found out she had mds

when she was 10 months old. I was so frighten, scared and even angry at God. I

have since come to terms with everything. I think the turning point for me was

spending a day in the ER at children's hospital where I saw so many children

with cancer and many other terrible things. I realize at that point things

could be so much worse. From my experience I can tell you I have not found much

of a difference in my daughter Isabella to any typical child. She walks, gets

into everything and is happy and well adjusted. She puts a smile on everyones

face that sees her. I think she might be a little slow at talking but I am

teaching her sign language and I have early intervention coming for her.

Isabella seems to lose words, like

one day she knows them and uses them for a month, then they are gone. Everyone

keeps telling me it might be because she was learning how to walk. But Isabella

has two disorder the other one is triple x and both come with language delays.

She has a therapist work with her two days a week. She has a vision therapist

work with her and she will be getting glasses next month. She also has a

developmental for speech. I know you are worried about the future of your child,

I find myself worrying about that also. In all honesty I worried about her

future even before we found out she had mds because the world can be such a

cruel place, now I just have different worries. When you are wondering about

things just be sure to ask the group. They have provided so much insight and

help for me I can not tell you. You can also e-mail any of us directly and we

will help you also. Believe me we have all been where you are and this is the

worst, it does get better.

Sue

Isabella 14 months

Welcome April and Tony!

Hi Everyone!

We have a new family joining us today! Here is what April had to say...

Hi my name is April and my son's name is , but we call him Tony. He is 4

months old. He has been medically diagnosed with Mosaic, the test results from

the chromosome test are due in next week, but based on the pediatricians

findings, he has all the common symptoms pointing to DS, he is the sweetest

baby, I love him to death. I would love to be able to be accepted into the group

so I can gain some insight on what to expect and how to cope with the news. I am

so scared, and society can b so cruel. I only want to do the best for my baby

and I will gladly take any advice & information I can find.

Welcome to our family April! I am so glad you have joined us! We are here for

you and are willing to share our experiences with you so that you can help Tony

in every single way! I know this news is scary right now, but after you get to

know everyone here, you will find that having MDS is not as scary as it sounds!

Feel free to ask all the questions you can think of and tell us all about Tony!

(We love Brags! lol) Tell us where you live. We may have families in your area!

I look forward to getting to know you and Tony more and hope to help you in any

way that I can.

Kristy Colvin

IMDSA President

Mom to Arron 26 (got married yesterday!) 22, Tim 21 MDS, Stevan 20 and

Garrett 11

www.imdsa.com

March 2, 2008

April,

Welcome to you and Tony! I'm so happy you found IMDSA's support group. I know

you'll find it very helpful and informational over the years to come. Just to

introduce myself a little, my name is and my little boy Aidan

was diagnosed around his 2nd birthday because his speech was delayed. I have 2

other little girls and a boy due any day now! In addition to being a mom, I've

also joined IMDSA's Board of Director's as the Newsletter Editor. The quarterly

online newsletter is available as one of the benefits of an annual paid

membership to IMDSA. With your membership you get the 4 issues of MOSAIC WORLD,

plus a whole archive of past newsletters at your disposal. Each newsletter is

full of information, tips, articles, research, etc. from professionals, as well

as families and individuals living with MDS. So, if you have any questions

about the newsletter email me at slpbjones@.... If you'd like to know

more about IMDSA

membership go to www.imdsa.com.

As for this support group, I hope you feel you can pose any question to everyone

here. Chances are, someone's been in your shoes before and I learn something

new all the time from others' experiences. Congratulations on your little baby!

I can't wait to hear more about him!

IMDSA Newsletter Editor

Mom to Aidan (MDS) 5, a 4, 2