Wednesday, October 28, 2009

Cowgirl Abby

video

Yesterday was Cowboy day at Abby's school. We got some great pics and a couple of videos. We put her on her little horse and she was having such a great time. If I can figure out how too turn the other video around I will post it soon. I took it sideways for some reason.

You can tell how excited she was. I was so bummed that this wasn't a parent allowed event. I would havef loved to see all the other kiddos all dressed up. And yes. My Abby is the sweetest little cowgirl on earth!!!!!!!!

Sunday, October 25, 2009

Dancin girl


Here is video of Abby dancin with her friend Casey ay last weeks Dancinforrett event.

Friday, October 23, 2009

Dancinforrett 2009




Sorry it has been so long since I've updated. We had our Dancinforrett fundraiser and I have been running around like crazy.
We had a decent turn out of the usuals and are so thankful. We did have almost 80 people that we expected to be there that didnt show up. If I do this again I hope to do it bigger and better. I only raised about a fifth of my goal but live and learn. We will get to that cure!!!!!!!!
Above is a slideshow of the event. Videos in the next few days.
Thanks so much to everyone who came and helped. You are so wonderful!!!!!

Sunday, October 11, 2009

Things they dont tell you about Rett that you have to learn.

Girls with Rett Syndrome have so many struggles. When first diagnosed parents are usually told to take them home and make them comfortable. Don't let this get your down. The genetic scientists are clueless. Sad but true.

For the parents:

She is still your daughter and the same baby you had the day before the diagnosis.

Do not take her home and give up. Through therapy she can be strong and through persistence and education you can learn to communicate with her.

You have to learn to dream new dreams for her and for yourself.

It's ok to grieve. This is going to be a long hard road. And she is going to give you more joy and love than you ever thought possible.

It's ok to let others help. You have to take breaks or you will be worthless to her.

Most important....You have to CHOOSE to be happy. Remind yourself of this in the down times.

The girls

Just because they can't talk doesn't mean they dont have anything to say.

Invest in eye gaze equipment and picture symbol software. You will find that though she may not be able to touch or say the right answer doesn't meant she isn't looking at it.

Give her time to answer in her own way. Most thought processes take 30 seconds or more and it is very important that you don't ask her the same question over and over.

Our girls have very low muscle tone and low body awareness. Physical therapy is a must.

They quite often suffer from vertigo and equilibrium issues. This is why they pause in doorways,at pattern changes in the floor and why the seem unable to step down. A light floor to a dark floor looks like a drop to them. A 6 inch stepdown looks like 3 feet.

The process in their bodies that makes melatonin(the natural hormone that makes you tired at night) is not completed in them. Melatonin can be purchased anywhere. Check with your doctor for dosage instructions.

The screaming that occurs during regression is due to many factors. Such as Lack of sleep,confusion,frustration and gastro problems. Most suffer from some form of Acid Reflux or extreme stomach pain that can be controlled with medicine and diet.

When she stares at you and leans forward and then does it again..consider that because she can hear her thoughts in her head she thinks you can too.

Please please order a copy of The Rett Syndrome Handbook by Kathy Hunter....It will be one of the most helpful things you ever do.

Please print this out and read it. I learned so much here:

Communication Strategies

Websites and support

IRSF

Girlpower 2 Cure

RSRT

Blue Bird Circle Rett Center

Rettgirl

Peace and Love
Terri

Thursday, October 8, 2009

My sweet Rett Angel

video

October is Rett Syndrome Awareness month and above is my sweet Rett Angel Abby.

Rett Syndrome is caused by a defective gene on the X chromosome which is why is it is effects females the most.

This gene is called MECP2 and it is considered the regulatory gene for every other gene in your body. In other words...It turns on and off all nerve function in the body. When this gene is defective it keeps all functions in the body and brain from performing correctly.

Girls with Rett Syndrome are typically born healthy and appear normal and achieve all of their milestones until 6-18 months of age when first signs of Rett Syndrome start to appear.

Girls start to suddenly lose almost all the skills they have acquired up to this point.

50% of Rett girls are unable to walk

80% suffer from some sort of seizure disorder

They lose most or all of their purposeful hand use.

They suffer from tremors and extreme anxiety

They are unable to speak or sign and have almost no communication skills.

In February of 2007, a complete reversal of symptoms in mice just days away from death was published! Researchers at top-notch institutions all around the world are working on treatments and a cure for Rett Syndrome.Their work is not only helping thousands of girls and women worldwide, but their findings have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer's,Parkinson's and many other disorders. Most money raised for Rett Syndrome is raised by private efforts. We are by and large overlooked for government funding even with a known gene, excellent animal models and PROVEN reversibility.

You can help by spreading the word and by donating to the cause. You can honor Abby by donating here during the month of October.

You can donate anytime...all year around by clicking here.

Thank you

Friday, October 2, 2009

Feeling Better

video

As some of you may know our little Princess got the Swine Flu the week before her 5th birthday and we had to postpone her party until November:(

She is slowly getting her strength back and starting to feel a bit better

We got video of her and her Daddy opening gifts from her Grandma in the Czech Republic.

I bet everyone wishes they had a five hear old that got this excited over a pillow!

That's not all she sent but Abby absolutely loves it!

Thanks Grandma Marie!!!!!