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

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

Hellooooooooooooooo

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.

Giveaways

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.

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.

Living with Punky Bruiser

It' been a minute since I posted last, mainly because we have been sick in rotations...and just in case you were wondering if I did a Typo on my tittle..NOPE. I am not talking about Punky Brewester the character brought to life by Soleil Moon Frye in the '80s,which I happened to love watching; I am talking about my very own Punky Bruiser. Yep life with Punky Bruiser is very challenging, exhausting, but loving and fun. My Punky is in love with purple, it if were up to her the world would be painted in purple with the occasional orange, pink, red and brown to contrast. See she loves these colors and they bring peace to her soul. Why? Well I don't know, and to tell the truth I've tried to figure this one out for 2yrs now and gave up and now I'm simply happy knowing it IS what it IS and it works for her, therefore it works for us. Purple works and so does mixed matched socks and shoes, tops and bottoms, it just does. Flowers and prints, stripes, dots, animals and all seasons mixed. And this has been OK because she never ventured into the world all discomposed. Never until NOW....yep she broke down and wore pink and white stripe panda shirt with blue jeans with green and blue turtle belt, white and red light up Reebok's with black socks with orange Jack o'lantern. EEEEKKK! I freaked, I tried to explain it did not match (she's usually very good about matching), but this particular day she needed to wear these mix matched items. She was going to Occupational Therapy and it's like she knew they'd be trying something new that day and would only be able to handle it dressed as "Punky Bruiser"
She broke every rule in my book and ALAS I now understood others I have seen dressed just like her. I was not going to fight, no point to it really, I explained myself a couple times and she was not "getting it" and instead of starting WWIII, I caved in and decided she needed to be herself.
And you must be wondering about "Bruiser" well that's her our little bruiser, she's tough and gets bruises often. She runs into the world head on full throttle no matter what. And when she's not getting them she's delivering them to our other children. Of course they are always under close supervision, but if you knew her you would see why it only takes her a quick second to overpower a 7yo while she is only 3. In a split second she can spell disaster in a million ways and still look angelic. Please don't get her wrong she is not lacking discipline, nor rules or limitations, they are there and set and time outs and lose of privilege take place,however she doesn't fully "get them". At least not YET. We hope and pray that someday SOON, she will join the others in the understandings of our family dynamics. Until then we keep living life with Punky Bruiser and loving her to the fullest and enjoying her silliness.
This is a glimpse in the life of my 3yo with Turner Syndrome, Developmental delays, ADHD, Anxiety Disorder among a few.


Here she is in her favorite color, purple with her older sister being silly.



Miss Punky B Tutu made by mom