No Longer Lurking

[Guest guest]

Yes Bruce and Tim......We have been lurking for a week or two now but

you have found us out.

I have been avidly reading all your messages and trying to work out who

is who.

I'll just introduce our family today but hope to be in contact with you

all much more in the future. What a different world from the one we

found ourselves in nearly 6 years ago when our son was born with

CHARGE. We were told that there were no other children with CHARGE in

our part of the country and were given no way of contacting any other

families with CHARGE. Glad to see things have changed.

My name is Desley O'Connor and my husband is Greg. We have three

children...Isaac a redhead who is nearly 9

a blonde who is nearly 6 and has CHARGE

and Evie a brunette who is 9 months old.

We live in Wellington New Zealand and as Tim said I have attended the

last two conferences in Australia and the latest one in Auckland. I

have a goal of going to a conference in the States one day.

Well I won't bore you with any more details. I have particularly been

interested in your comments about deciding to have another baby or not

as we went through all that recently. Like others we had extensive

ultrasound including one for the heart. I also took a course of Folic

Acid tablets before getting pregnant and in the early stages of

pregnancy to try and lessen the likelihood of neural tube defects. At

the end of the day you just have to decide what feels right for you and

your family. However I always remembered meeting another mother of a

CHARGE child when was young. Her son was about 12 at the time

and she told me she had always regretted not having another child after

him. For our family having another baby after 5 years has been a joyous

experience and we appreciate every " normal " stage of development she

goes through.

Just have to add that has wee'd into a potty today for the first

time in his life!!!!!!!!!!!!!!!!!We're overjoyed even if most of it

ended up on the floor!

Sorry this has ended up being quite a saga...but I have been lurking for

quite a while.

Bye for now

Desley