Wednesday, February 29, 2012

Determination leads to Victory

Tears flowing down my cheeks, not because of sadness but because of an overwhelming wave of emotions, happiness, thankfulness,relief and pride. You see Yesterday was the first soccer practice for Josslyn, something many parents go thru nothing to be so emotional about, except, 4 years ago we never thought this would be possible, at least not so soon.

 Josslyn was born with Turner Syndrome or TS as we call it, she is a classic case which means she is missing 1 X chromosome. This is a disorder that happens randomly in the beginning of embryonic development, it happens in 1 of every 2,500 girls born worldwide and many go undiagnosed until their teen years unless they have heart problems or clear signs at birth or are lucky enough to have a Dr that knows enough and can spot it.

 For more information about Turner Syndrome please look up:

  For our Josslyn it would take almost 2yrs from her birth to get a diagnosis that would explain everything we had been going thru since before her birth. Josslyn had been behind on all her milestones and when I say behind I mean over a year behind. Her gross motor was affected by low muscle tone also common in TS, she kept failing hearing tests and having tubes put in to drain 3 times, her language was very behind to where she had just 4 words when she should have had at least 50 or more, this caused a lot of frustration for her and us as well so we embarked in sign language which helped. A team of Early intervention specialists would visit us weekly and we also did Occupational therapy and behavioral therapy to address the anxiety with change, her gross motor skills, her language skills.

The part that most got her frustrated was not being able to walk and not yet stand alone when she was already 18mo, until then she had done army crawls and rolling over because she could not get on her knees. Watching her brother who was 6yo at the time play Soccer and my husband, my older daughter and I practicing with him would get her so upset it would break my heart. I decided to use soccer as an incentive to move her legs. I would hold her dangling over the ball and swing her so she would kick it, oh she enjoyed that so much, however our backs did not. We did this everyday as much as we could because her want to play was bigger than her not being able to just yet. Soon after she started walking, was very wobbly and would fall a lot, but was happy to kick the ball. We practiced daily which helped her balance and coordination and she was pretty good and fast.

 Even though she was finally walking by age 2 she still needed a lot of help, it wasn't until after 3 1/2yo that she could walk steady without falling so much, she continued therapy in which we practiced walking sideways and backwards, things that just come naturally to other children she needed to be taught. And even though by then we had addressed this obstacle we still had to face social anxiety, you see she also has a form of autism (PDD-NOS)and new things, change in things and being around a large group of people well it was just not possible for her.

 Thankfully having her in special education at our school starting at age 3 and still doing behavioral therapy, speech therapy and Occupational/physical therapy helped her develop social skills needed to interact appropriately with others and being able to follow rules and instructions, being able to separate from us and go with her peers and teachers which brings us to amazing day in which she had decided she was ready for Soccer and we decided to give it a try.
I am so thrilled she was excited to practice and be with her peers and did so well. It doesn't matter if they win games or not, to us she already won, she defeated the odds from the very beginning and will continue to do so because she is full of Determination.

 To read more stories about TS and our families visit one of our friends  and fellow TS Mom where she featured stories for TS Awareness Month and we had the pleasure to guest blog : Fat Little Legs

 Thank you for reading our story and joining in our Turner Syndrome Awareness Campaign. We acknowledge TS Awareness month as February, but to us who love someone with TS, awareness happens every day.
 I specially want to thank a GREAT group of Moms and Families that help with support and knowledge..if you are a parent of a girl with TS, please look for us here : TS Mommies n Parents

If you are in the medical community and wish to receive a FREE 1 Hour CME credit please visit: Turner Syndrome Society of US  

Remember 1 in every 2,500 girls has TS, you may know one or come to love one and not even know it. Education,Awareness  and Early Diagnosis is key to helping them achieve their goals.

Friday, January 27, 2012

TS Awareness on the News

Yesterday we had the pleasure to recieve our local 7 News in our home and share part of our life with Turner Syndrome. We are thankful they came to help spread awareness. Here is the video.
And a link to KSWO

Thursday, January 26, 2012

Facing Turner's

This is the Article our Local Newspaper released last year for TS Awareness Month

Turner Syndrome Awareness Month

First of all most of you will question what is Turner Syndrome or TS as we call it. Well it's a random genetic disorder that affects girls, 1 in about 2,500 live female births worldwide. They are generally missing 1 X chromosome and can have variations of mosaicism ( part of the 2nd X, inverted arms in the X, triple X etc).
About 1% of TS pregnancies survive and are born, making these girls an extraordinary miracle, bc not only does science tell us you need all your chromosomes to sustain life, they have 1% of survival rate and still make it and thrive. Unlike most syndromes this syndrome does not come with mental disability, but yes it can bring some learning disabilities and autism spectrum disorders. These girls/women need to be checked for heart, kidney problems, have growth problems which most use Growth Hormone treatments IF diagnosed on time, ovarian failure and high blood pressure are also a factor.
Which brings us to raising awareness, some do not find out until they are teen or adults and some are diagnosed sadly after death upon further looking for a reason why.
Last year our local paper did a story on my daughter and her journey and ours with TS, this year we reached out to our Governor and I am happy to announce Governor Mary Fallin from Oklahoma agreed to sign the Proclamation for February as TS Awareness Month. We are very thankful as this step is just another brick on the road we are trying to build to help spread awareness not just Nationwide but Worldwide. The more awareness the more lives can be saved and be treated early to ensure a better quality of life for them.

I must add these girls are full of drive and determination, they are sweet,loving and very bright and they are able to live long, happy and fulfilled lives. Some end up being teachers, counselors, therapists, Dr's, nurses and more.

To find out more about Turner Syndrome/TS please visit TSSUS.ORG


Finally found my way back into my Blog. Can't wait to start sharing stories, ideas, inspiration and more.
A lot has happened since I last posted and a lot more is bound to happen in the next few months as our
move to Italy takes place.

Looking fwd to checking out new blogs and sharing with you all.

Monday, April 11, 2011


We already had the Custom MOM Bracelet giveaway by submitting
your child's drawing as an entry and now we are getting ready to close
tomorrow night at 8pm cst our 500 fan giveaway on Facebook, go check out
the items our sponsors put together and show them some love and Good Luck
to those who enter.

Tuesday, January 11, 2011

New Lines are getting ready to hit the lens

Designs are on their way...beads, wire, crystal, pearls,gemstones, glass and more all
taking different shapes in efforts to offer great new designs for our lines.
We will still be providing our very own Awareness lines and always open
for Custom creations for our awesome customers, but we are expanding our horizons
and materials. Get ready to be dazzled in jewels...........till next time
Make sure to join our facebook page.