Hello all,

My first child, Skylyn was born in July of

98. She weighed 8lbs. 14ozs. and was 24 inches long. She has shoulder
dystoshia and tibial torision. She has had no surgerys and lives a
pretty normal life that a 6 year old could ever live. My second
child, Ashlyn was born in Nov. of 03. She weighed 6lbs. 12ozs. and
was 19 1/2 inches long. She has Spina Bifida at the C-1 region, Life
Threatening Reflux, G-Tube, and her right leg is 1/2 to 1 inch longer
than her left leg. She is doing well. We have been through 2 major
surgerys, the first was in Feb. 04, which was for a Nissian, this is
a stomach surgey that they call a wrap around the esophagus to
prevent food from regurgitating. During this proccedure they placed a
G-Tube. The reason for this surgery was because Ashlyn was what they
call a silent refluxer, meaning she would spit up her food and try to
swallow it back down at the same time, but it would always go into
her lungs meaning she would asperate. Ashlyn died on me 3 times and I
brought her back to life. The second surgery was in April 04, which
was for the resection of her meningeocele at C-1. This surgery went
well. Ashlyn is not paralized, or on a vent, or mentally challenged.
In which that is one great miracle. Ashly is now almost 14 months
old. We have been through alot, and proud of every step we have
taken. She has participated in the Feeding Program at Children's
Hospital, and she is now eating enough on her own to be released for
a couple of weeks to see how she is going to do. We also attend a
Spina Bifida Clinic at the same hospital, and so far she is doing
wonderful. Ashlyn is begining to walk, she holds on to things and
cruses around the house now. She is starting to speak, and she has
been understanding what you say to her for a while now. She is my
miracle sent from above. She has changed my life for the better and
has reaaly shown me what a strong spirited Little Angel she is. Now
here is what I was told when Ashlyn was born. They told me she would
never walk, or play, or speak, or be able to see. They also said that
the area of the Spina Bifida she has was uncommon and that she would
be on a vent, and be paraliyzed from her neck down, & mentally
challenged. They also said that they could not not tell me how long
she would live even if she would make it through the night. Basicly
they were telling me she would be a living vegatable. The advised me
to put her up for adoption, they said that the long term care for her
would put me in a mental hospital. Well, as you have read, she is
doing everything they said she would not, and needless to say they
were not telling me what my daughter was not going to do and I was &
did not put her up for adoption. Ashlyn is a fighter and has made it
this far agianst the odds. Both of my children are strong kids. I
love them both dearly.
Laura