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Update on jolynn 2-14-10Over the past few months Jolynn has been
talking more and more everyday. It is so wonderful for her to be
able to communicate her wants and needs!
We haven't had many medical issues except for the occasional cold
which she gets all the time, along with very bad ear infections, no
matter what I do to boost her immune system.
She has however become violent, hitting and kicking mostly. She's
not a small girl so it tends to be hard to control her at times.
Other than that the Ryan family is just hanging in there and by the
grace of God, continuing to make progress everyday.
Alisha
Sent on the Sprint® Now Network from my BlackBerry®
My
name is Alisha Ryan, my husband Chris and I have a 8 almost 9 year
old daughter who has Trisomy 13 syndrome. We feel very fortunate to
have this special child in our lives and would like to connect more
with parents of other T13 children. Here is our story:
Jolynn Marie Ryan was born September 5, 2000 in Palm Springs, CA by
scheduled c-section. I had a normal pregnancy, she was full term and
we expected no problems, other than the fact she was in the breech
position (reason for the c-section). Being my first child and me at
the age of 18, I was completely paranoid but everything went well,
she was healthy and her apgar scores were normal, but once they
brought her to me all cleaned up and I was doing the normal mommy
inspection I noticed she had very dark, large purple markings on
both her eyelids, down the center of her forehead and on her back. I
was told they were birthmarks. They said they would lighten as time
went on. Ok, It didn’t seem like a big deal. She also had a webbed
toe on her right foot. Also not a problem. We went home 3 days later
as is customary after a c-section.
At her 6 week check up for shots I asked the doctor to give her a
full exam. I just couldn’t shake the feeling that my child was
different. She wasn’t like other babies I had been around. She
didn’t do anything but cry, all day, all night, wouldn’t eat, hardly
slept. She also had mucus coming out of her tear ducts. The doctor
said I was just being a paranoid first time mother, she had a
clogged tear duct and I was to put drops and ointment in the eyes
every couple hours. So we went home.
 As time continued to progress my child did not. She wasn’t crawling,
laughing, playing she just continued to cry. We learned how to deal
with it. As many parents with a special child know you don’t think
about how to handle things you “just do” which has become our creed
we live by. We took her to doctor after doctor, all 6 concluded the
same thing, I was insane. My husband changed jobs in 2002 and we had
gotten new health insurance. We had to go receive physicals to
establish our new primary care physician. I took Jolynn to a P.A. at
the closest Pediatricians office. She was almost 2 by this time not
walking, not talking, could barely sit up alone, she just laid on
the floor and rolled around. The physicians assistant walked into
the room took one look at Jolynn and the questions just came flowing
out of his mouth. He finally stopped, realizing I was in a state of
shock. He said “There is something wrong with this child and I’m
going to find out what it is!” those words will forever be stuck in
my brain.
We did some blood tests and 2 weeks later he called us back in. He
said she has Trisomy 13 syndrome and she has many guardian angels
watching over her. He showed us books and information but suggested
I didn’t look it up on the internet because it would frighten me. I
cried thinking my child was going to die. He hugged me and said” God
gave you this special child for a reason. You might not understand
it but she is your for a reason”. More words that I will never
forget.
We then set out on a whole new kind of medical adventure making sure
she didn’t have any other underlying conditions. Cardiologist,
Audiologist, Ophthalmologists, Geneticists, Internists and many
more. We saw so many doctors in a 6 month period of time I couldn’t
even begin to tell you there names. All told me that she has NO
other physical problems.
 Jolynn,
her brother Joshua (5 years old and no history of T13) Chris and
myself now live in West Plains, MO. We have wonderful friends here.
Jolynn attends Ozark Horizon State School for the severely
handicapped. She is in the primary classroom, 4th grade.
She now walks, runs, jumps, plays, eats (non-stop I might add) and
enjoys life. She talks a little more everyday and has made enough
progress at her current school that she has been able to discontinue
her physical therapy.
She rides adaptive tricycles, swings with friends and loves the
school nurse Debbie. She is quite accident prone but a few cuts and
bruises and no comparison for the quality of life she has begun to
live here in Missouri all thanks to the love and understanding of
Sue Meyers (Early Childhood Special Education teacher at West Plains
Elementary School who pointed us in the right direction and helped
all of us learn to function better as a family and in the community
with a special needs child!
Please feel free to contact me. These are a few of Jolynn’s pictures
from the last year.
Alisha Ryan
Amryan82@yahoo.com
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Alisha Ryan (Missouri) is available for immediate
support 
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