Welcome New Family

[Guest guest]

Hi Everyone

We have a new family! Here is what they had to say...

I recently gave birth to a little girl that was diagnosed with MDS like

some parent this was discovered at birth. I need support when I am sad

and also to counsel and ask or answer any questions.

Welcome to our family! I am so glad you joined us! Please tell

us all about you and your little girl. Feel free to ask any questions.

We will all be happy to share our experiences.

mum to scott 10mds and 8

http://www.imdsa.org

IMDSA Secretary and Website

[Guest guest]

Welcome !

I am glad you have joined us! Please feel free to ask any questions you have

here! We will all be very happy to share our experiences!

 

 

Here is some more information from :

 

Hi,

My name is . I am in Pensacola, florida...I am a 30 yr old mom to 2

beautiful little girls arianna almost 3, kaylin 18 months, and soon to be daniel

sebastian, (due march 7th 2009)....oh yeah, and married to my best friend

clint.... i was never supposed to be able to have kids, and well um, 2 now

3...... was diagnosed at 12 weeks gest. to have a severe cystic hygroma

that was very apparent behind his neck in the ultrasound. i was given an 80-90%

chance the pregnancy was going to terminate b/c of the size of it.  I

disconnected from my pregnancy at about 8 weeks, b/c i knew something wasnt

right. I was sick sick sick, and kept having dreams that my baby had DS. i know

weird, noone believed me they just told me i was crazy and it was just me being

a worrier....  well we had the u/s that found the hygroma, so they scheduled an

amnio. 4 pokes to the belly later, we got fluid. 2 days later they called to

tell me it was indeed a

boy...yay....finally, that he had also had 27 cells tested and 24 of them were

positive for down syndrome so that made it mosaic...i have been torn from my

children a lot lately for drs appts, much needed sleep, and researching the

internet trying to just find as much info as i can on it. sometimes i feel like

i am working on a graduate degree in medicine or something. there is now

something else in the factor......open heart surgery at birth.... he has an

atrioventricular canal defect. i have been on a waiting list for a peds

cardiologist here in town for 11 weeks now, well i got a call yesterday that my

appt is now friday the 12th b/c she is leaving the country for 6 weeks.... my ob

is positive i will be lucky if they get me to 34 weeks b/c he is already in

position for birth and has been there 2 weeks....with 2 prior csections and all,

we are now having to get 2nd and 3rd opinions on a local delivery or if i need

to get the steriod shots and just go

to shands hospital 8 hours from here so they can perform the surgery. so

anyhow, thats basically my story for now, and ill share more as i get more or if

you are interested....

thanks for letting me open up and join your group 

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

http://www.mosaicmoments.today.com

Subject: Welcome new Family

To: MosaicDS

Date: Wednesday, December 10, 2008, 4:56 AM

Hi Everyone!

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

i am currently 27 weeks preggo with a son who has been diagnosed with mosaic

trisomy 21. it has been characterized on 24 of 27 cells during an amnio and

genetic testing.

 

Welcome to our family! I am so glad you have joined us! Please feel free to ask

any

questions you have here. We will all be very happy to share our experiences with

you!

Twomey

IMDSA Secretary & Website Admin

Mum to 10mds and 8

http://www.imdsa. org

http://www.twomeyco ntracting. com/reunion. htm