This message was initially a reply to Dora (Emma's
mum). I was excited to see a mom of a Weaver's girl.
I've been corresponding with Dr. Weaver over email,
and I asked about reaching other parents of Weaver
girls. Our Rachel Joy is now four months. She is in
the 75th percentile for length and weight and slightly
more (90th) for head size. She doesn't show an
excessive appetite, but we also control her intake
with food because she has a g-tube. We can't help but
wonder about when she will make sounds, feed without a
g-tube, and develop some of the skills we see in our
other girls. In the meantime, we are receiving great
care with a respite nurse 16 hours a week, and there
are some good specialists involved with her care - but
none have worked with Weaver Syndrome. We now have
meds for reflex and poor bowel motility, issues that I
wrote about earlier, and we couldn't be more pleased
with her progress in overcoming constipation and
reflux!

How does it go for you (all of you?) with meeting
other parents in the same situation? So far this
group seems to be the only contact we have with other
Weaver families. I would love to hear from another
Canadian family, but maybe that just won't work right
now. We hope to make a trip to Minneapolis at
Christmas for a wedding - anyone nearby? : )

Are there things you purchased for your kids that
helped with the transition from infancy to toddler to
preschool -in terms of dealing with carrying a heavy
child around or encouraging motor skills? Anybody
find a great toy or something helpful (like signing)
that made a difference? No, I am not looking for the
magic formula, but I was curious about specific things
or ideas that made a difference for you.

Finally here - I need to finalize my topic for my
thesis (Master's of Educatin program).... Should I
work with a topic related to Weaver's Syndrome? : )

All the best to you all!

Sara Pot - Canadian mom with Rachel Joy, 4 months
(and Rachel's loving Dad and two big sisters)

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