This is our son, Tre'
Braxton. He was born on April 3, 2002. He weighed 4 lbs, 15 oz and
was 18 inches long. Right away the doctors knew that something was
a bit different about him. 9 days later we got the news that rocked
our world.
After difficulty thriving,
feeding tubes, neurological test, chest films, and genetic testing,
it was determined that our son had Cri Du Chat Syndrome. No one in
our area really seemed to know much about it. We were basically sent
on our way with very little information. Thank God for the
internet.
He received a G-tube at 6
months. Regardless of what we were told to expect, he is now 18
months. He is crawling at full speed. Getting into everything.
Babbling and laughing. Other than feeding difficulties--he is pretty
regular. He has OT, PT, Speech and Oral motor. He also has a
nutritionist. I am fortunate enough to have a child care provider
who cares enough about him to give him therapy all day while I
work.
Dealing with the emotional
aspect of this syndrome is quite difficult. Not Knowing what to
expect in the future is also difficult. Knowing that God gave me a
son who is loved, who is happy, who is healthy, who is
playful---priceless and beautiful. Our jobs as parents is to love
our children when no one else will. To take care of them with all
of our being. You have a child with a lifelong syndrome---deal with
it and love your child. As God loves you..
Update
as of 29/1/07
Tre' is doing great. His g-button was removed in August '04. He
has not had any health issues since then.
He began saying some words like mama and signing in 04. He still
only says a couple of words and will sign if he feels like it. He
is not walking independently yet. He walks with a walker. We are
preparing for Hippo therapy right now......hopefully this will give
him the balance that he needs to walk. He is attending pre-school
for half a day at Kooken in Arlington. Next school year, he will
go to school all day.
Communication is the biggest challenge right now because he wants to
tell me things, but can't figure out how to do it. Therefore, he
pinches and bites. It's really sad.
For the most part things are going great!
Tre'
Braxton - 4 years 