My son Daniel is now 3 and a half years
old. He was born with trigonocephaly and we had the condition
surgically corrected when he was 6 months old.
Daniel wore a special fitted helmet for
the next 12 months. In our case, the surgery was not an option. The front
suture in Daniels head had fused early in his prenatal development and we
needed to open it up for normal brain development.
I would be happy to talk to you about the
procedure and answer any questions you may have.
Please let me know if I can be of
assistance.
Take care,
Rick Poll
From:
11q_disorders@yahoogroups.com [mailto:11q_disorders@yahoogroups.com] On Behalf Of feeleym65 Sent: Tuesday, November 28, 2006 12:00
PM To: 11q_disorders@yahoogroups.com Subject: [11q_disorders]
Introduction
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.
Hi list members, My name is Mary Stoner and I am the proud grandmother of 9 grandchildren. My husband and I live in Galesville, Wisconsin-------kind of between...
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...
Hi Marisa, My son Daniel is now 3 and a half years old. He was born with trigonocephaly and we had the condition surgically corrected when he was 6 months old....
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...
Hi Marisa, I see this has been a while and I am sorry I didn't get you this info earlier, but my daughter Faith Marie was born September 1, 2004 with an 11q...
Hi Rick Thank you for your reply. Are you from this area? I was wondering who did the surgery. You mention that surgery was not an option. This is something I...
Hi Marisa, I live in the Detroit area in Michigan. Daniel's surgery was performed by Dr Roselle at Children's Hospital in Detroit. She is the head of the ...
Hello Marisa- I'm Sarah and my daughter is a Jacobsen Child. I wanted to put my 2 cents worth in this conversation due to the platelet issue. Have the...
Kyauburn1@...
Nov 30, 2006 12:17 am
JEREMY HI. THIS IS SANDY HEBERT. JADE'S GRANDMOTHER. WE MET IN CALIF. AT THE CONVENTION. DO YOU REMEMBER? YOU SENT ME A LETTER THAT WAS MEANT FOR SOMEONE ELSE....
Sandy, I'm not Jeremy (apparently ~laughs~) This is Nathan (the red head) Cato's mom. If you would not mind I would like copies of any of the pics you have...
HI BECKY: I AM SO SORRY. I REALLY DON'T KNOW HOW YOU GOT JEREMY'S LETTER, BUT WITH ME AND THIS COMPUTER--ANYTHING IS POSSIBLE. LOL MY DAUGHTER, NICOLE (JADE'S...
Hey ya Sandy, When you post a letter to the group everyone in the group is able to see it. No worries :) I posted a few pics of Nathan on the groups page. The...
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