Marisa,
Brayden had the head surgery when he was 8 months old. We had to
wait until his platelets were at 60,000. And then he had platlets
given throughout the surgery and for the next several days. He
spent a week in the icu and then another week in a regular room.
His head is still a bit misshapen, but we were pleased with the
results. His head was growing very long and narrow before the
surgery. We had it done in DC because we lived there at the time,
but moved to Atlanta right after. All of his follow ups were done
here by Dr. Boydston. I think we may have talked about him before.
I really like him and trust his opinion. He is more cautious about
doing surgeries, especially when the child is dealing with so many
other things too. Brayden also had an asd and vsd, but luckily they
closed up and didn't require surgery. He also has moderate to
severe hearing loss and wears hearing aids and glasses. Both
Brayden and Zachary have major feeding problems. Feel free to call
me any time if you want to talk again! It's nice for me to finally
have someone close. And if it's any consolation, Dr. Todd told me
he had a new 11q patient who was a baby boy, (I'm sure that's Noah)
and he said he got a bit worried knowing Brayden and Zach's
history. He said luckily, his new patient's ears weren't nearly as
bad as he was expecting--in fact he was pleasantly surprised (all
things considered. Anyway, hope to talk to you soon.

Linzee
--- In 11q_disorders@yahoogroups.com, "feeleym65" <feeleym@...>
wrote:
>
> Hi.....my name is Marisa Feeley. I live in Dacula, GA with my
husband
> and 3 boys. My youngest son, Noah, was born on March 27 06. He is 8
> months old now. He was born with an unbalanced translocation of
> chromosomes 3 and 11(passed on paternally). Its a 3 duplication
and 11
> deletion. I am wondering if there is anyone else who may have this
> same combination. I am also looking to communicate with anyone who
is
> dealing with feeding difficulties, trigonocephaly, VSD, glaucoma
and
> severe hearing loss. My husband and I are currently making a
decision
> as to whether we should move forward with cranial surgery to
correct
> his metopic synostosis. Is there anyone who is familiar with this
and
> what helped you decide on going through with it?
>
> Thanks!
>
> p.s. Linzee we spoke on the phone a while ago. Hope to talk to you
> again soon.
>