I'm new to post, but have been reading the posts for the past few
months. My daughter Maura was diagnosed with Weavers at 15 months,
she is now 22 months old (today), 39 pounds and 39 inches long (I
know I keep saying she's square :-)

She was born (we thought) healthy 9 lbs 2 ounces and 21 inches long,
(I'll leave a lot of detail out) had heart surgery at 13 days old to
repair a narrowing in her aorta, was on a feeding pump for 8 weeks
due to failure to thrive (although she continued to get longer) has
respiratory issues (floppy airways mostly due to her small chin),
umbilical hernia, uerator(sp?) reflux (some of her urine goes back
into her kidneys when her bladder empties), she didn't smile until 3
months of age (now she doesn't stop smiling :-), and at 6 months old
was diagnosed as being very behind developmentally through PT (and
has been getting PT and Play therapy ever since-also added speech and
occupational therapy over the past 8 months), she was being evaluated
by a neurologist due to lack of movement and high muscle tone on her
left side, when she developed black eyes (8 months old), two weeks
later was diagnosed with neuroblastoma (cancer of the central nervous
system)...she is now in full remission after six months of
treatments...

She is the sweetest baby...and has been sitting up for 8 months now
and skoots everywhere she wants to go, with the help of a customized
walker she is taking some steps...I don't know that she'll ever crawl
in the normal sense due to her issues with her left side, but she
definitely gets to where she wants to go (and fast). We've been so
impressed with her development and how hard she works. For any
parents experiencing issues in movement or are having difficulty with
kids not wanting to do something, go to the water...since Maura
started aquatic therapy in PT (and we've since joined a gym with a
pool to get her in the other days of the week)...she has come a long
way...

Where (one of) my problem often lies is that she is behind requiring
us to use toys of a much younger level when her size dictates the
need for much larger toys... I've tried to work with toy companies
in developing lines of toys for kids, and I get canned responses
(kindly blowing me off) I don't think they realize how big the market
is for kids with challenges...

Another problem is discipline, although not much is required (she
really is a good child) she bites and does some other things that
require telling her no...she laughs when we yell (not because she's
being bad, just because she really thinks it's funny), and I hate to
even smack her hand because I don't know that she understands what
she did...I don't want to not discipline because I don't think she
understands, but I don't want to over discipline if she's not getting
anything from it just curious if anyone has any suggestions to help
us teach her.

I'm really looking forward to my dialogue with the group because
although I have friends that have children with challenges, I
don't "know" anyone else with a Weavers baby...

She is such an awesome child and is the light of our lives...she is
pleasant and loved by everyone...we're truly blessed, we just want to
make sure that we're giving her everything and doing everything we
can!

Hope everyone has a great day.

Kate, Kevin and Maura