hi. My husband and I are parents of a beautiful baby girl - the youngest of
three girls
- who has been diagnosed with Weaver's. She is now 8 weeks old; the diagnosis
was
given shortly after birth. I read through the postings of this site and read
of only one
or two girls. (My sister has also joined the group recently, so the posting
about the
niece is actually our daughter.) Is Weaver's more common in boys? We are
adjusting
to life at home. Our Rachel feeds with a g-tube, and we are optimistic she will
develop the feeding skills in time. She takes soy formula - any other babies on
soy?
It's been better on her system than EBM - crazy. We are not sure of the
future... We
take things one day at a time. We see Rachel's diagnosis as simply that - a
diagnosis
- but not a prognosis. The future is not certain; maybe that is aggravating at
times,
but it can also be relieving. We are thankful there is some support for
Weaver's
families, but it does seem to involve just a small group across the globe!
Hope all is
well for everyone who is a part of this group and we look forward to
corresponding
with other families.

Any other Canadian babies?

Is it worth meeting Dr. Weaver? We were discussing that the other night.

sara