[ Post a Response | 22q Deletion Interest Board ]
Posted by Caryn Caryn
on 12/12/2006, 2:48 pm, in reply to "Re: experiences wanted"
64.211.101.4
Beverly, what a ray of sunshine. I too feel blessed and feel that my whole life was preparing me for my VCFS child! Best thing that ever happened to me but not without struggle!
Thank you for the encouraging words, as the mother of a 5 year old I know the road ahead is going to be rough but I enjoy each day to the fullest with her!
--Previous Message--
: We have our oldest, who was born
: with mild mental retardation which
: was discovered in preschool. Our
: second has vcfs and was discoverd
: when he was in second grade and our
: third was born with no issues. No
: genetic links to child #1 and #2.
: We just hit the genetic lottery....
: Life has certainly taken us down a
: much different path than what we
: expected, however the gifts our
: children are appreciated and I feel
: humbled and blessed that we were
: chosen. That doesn't mean things
: have been easy, but as I watch
: parents of "normal"
: children, we all are faced with
: challanges..Try not to focus too far
: into the future and enjoy your
: children for who they are as you
: hope others do the same....
:
: --Previous Message--
: My third child was diagonosed with
: 22q11 deletion (DiGeorges). I knew
: she may have had a genetic disorder
: prior to birth since she had several
: heart defects.
:
: I have a 4 year old daughter and 2
: 1/2 year old son as well (neither
: have the disorder), and wondering if
: anyone else out there had troubles
: with pumping breast milk and dealing
: with insurance companies supplying
: materials for an NG tube (which she
: came home with from Johns Hopkins).
:
: We are awaiting for her next surgery
: but just wondering if anyone else
: has had older kids with a younger
: siblings.
:
:
:
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