don't know if the last post made it.....so here goes again....my
daughter is now 10 and for 7 years I have beat my head against a wall
(along with the school nurse, family doctor, teachers, and family)
trying to figure out what was "not right" with Bethani. She has
always been much larger than all other kids her age, she has
struggled with constant urinary tract infections, ADHD behaviors,
Asperger's type syptoms (high functioning autism) but yet there were
things about Beth that just didn't fit "just those things".....there
had to more.....she's very intelligent and a very high level
thinking child for her age.... and her memory is astounding.
However, she's already been through several bouts with suicidal
thoughts and with the help of medication, she is "somewhat normal"
We bought a house earlier this year ( from a local doctor) and he
suggested that we take her to a local geneticist. God works in
wonderful ways. After CT scans, X-rays and genetic testing.....We
finally found out that Beth has Soto's Syndrome......It was the
first time in 7 years that I actually could sleep...knowing that
there was nothing "seriously wrong" with my baby! She has been doing
much better knowing about the syndome that she has and knows that
things are going to be ok, and that knowledge sometimes is the best
medicine! It has been a difficult struggle, but now we know what
we're dealing with and somehow, that makes it easier. She still
has her "quirks"......of course that's what is so endearing about
her! I'm so glad God brought her into my life, exactly the way she
is......I've learned a whole lot about patience, unconditional love,
and the importance of uniqueness because of this....and I hope to
get to share experiences with others. If you have any suggestions
as to little nuances that might take place, please email me and
perhaps we can share funny and not so funny moments......i know I
have alot!