Hello Cyndy,
Welcome to the group.
My name is Ceci, I don't have any children with trisomic disorders, but I
work with children who do.
It sounds like you have a wonderful daughter! Do you have any pictures of
her you would like to share?

I wanted to let you know that in all my reading of trisomy disorders, she
won't get "worse"
She is Mosaic, which i'm sure you know means she has some "normal" cells
with only 2 "9" chromosomes. Since this is the case, her brain cells may
have a smaller percentage of three "9"s in every cell and so she is less
effected in developmental areas. I can't say that is the case, but in what
i've read that is one of the possibilities. Testing for an exact percentage
of affected cells in her brain/developmental areas isn't possible, but you
can get an approx. % of affected cells in her entire body. If you haven't
already, talk to your doctor about that possibility for Hanna.
Troubles ahead are always a possibility, but I wouldn't worry too much. Any
problems ahead would most likely be associated to strickly medical problems
(such as problems with her kidneys, etc but theres probably even no reason
to worry about that since its just a duplicated kidney.) In any case, talk
your concerns out with your doctor or genetic counselor, they will know
better then anyone how your child may progress in the future and will be
able to answer your questions more thoroughly.
Peace to you and Hanna.
Ceci


>From: trisomy_9q@yahoogroups.com
>Reply-To: trisomy_9q@yahoogroups.com
>To: trisomy_9q@yahoogroups.com
>Subject: [trisomy_9q] Digest Number 15
>Date: 3 Jul 2004 17:10:27 -0000
>
>
>There is 1 message in this issue.
>
>Topics in this digest:
>
> 1. new member
> From: "tynty" <tynty@...>
>
>
>________________________________________________________________________
>________________________________________________________________________
>
>Message: 1
> Date: Sat, 03 Jul 2004 03:54:31 -0000
> From: "tynty" <tynty@...>
>Subject: new member
>
>Hello,
>
>my name is cyndy and i just finished reading the messages posted and
>reminded of the heartache of news our baby was diagnosed with
>trisomy 9. i am new to the genetics thing and i will admit i do not
>understand some of the abbreviations used (ie. 9q, 1p26). my
>daughter, hanna, was diagnosed with mosaic trisomy 9 with complete
>translocation of 9 and 16. we were told she would probably not make
>it to term or live long after birth. she has just turned 7 months
>old and does not appear to have any delays or problems (knock on
>wood). hanna is slightly delayed in hitting her milestone but she
>is hitting them. she has no medical problems except a duplicated
>right kidney and has bilateral cholesteatomas. she is a delightful,
>smiling, petite little girl. has anyone heard of a functioning
>trisomy 9 kids? can i let myself not worry? or are there delays and
>troubles ahead? thank you. my thoughts and prayers are with all.
>
>
>
>________________________________________________________________________
>________________________________________________________________________
>
>
>
>------------------------------------------------------------------------
>Yahoo! Groups Links
>
>
>
>
>------------------------------------------------------------------------
>
>

_________________________________________________________________
FREE pop-up blocking with the new MSN Toolbar – get it now!
http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/