Rett We Can!

She can't do this. She can't do that... It can be a real downer for Rett Girls every day. But... only if we let it be that way.

Last year to kick off the New Year with an empowering attitude, Girl Power 2 Cure and RettGirl launched a new YouTube channel called RETT WE CAN!



Here is why we created this channel for any of you that are not yet aware of it:

* to share the "Rett" experience by showing the things Rett Girls CAN DO
* to put an empowering, positive, human face to Rett Girls
* to have a place to send therapists, family members, volunteers, and donors to see Rett Girls staying strong
* to have all the great YouTube videos ORGANIZED by category*
* to get inspired
* to explore different things to work towards with Rett Girls
* to educate others about Rett Syndrome

If you have a YouTube video you would like us to include, please send us the link! (post a link on Rett Girl's facebook page or email Terri at teresa@girlpower2cure.org. If you can't get your videos on YouTube, send them to Terri and she will get them put on for you!

Please know that there will be a wide spectrum of girls featured on the RETT WE CAN. Not all girls will be able to everything here. For instance, I know my Sarah probably will never water ski like Jade, but others just might!

The point is to always reach FORWARD. Always explore and challenge and keep Rett Girls active. All of us have a role to help bring these girls to their full potential. Each girl's potential will be different, but we want to make sure everyone stays inspired to believe...and have the tools to inspire everyone who lives or works with a Rett Girl.

Check it out now at www.youtube.com/rettwecan!

And remember to share with your daughter's school team , therapists, physicians and your family!

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* Our current categories include: Walking, Hand Function, Eye Gaze, Communication and Expression, Sports and Adventure, Therapies.

Examples of the videos we have in each category:

Walking: Olivia Walking

Hand Function: Jess Uses Touch Screen

Eye Gaze: Colors with Brooklyn

Communication and Expression: Storytime with Abby

Sports and Adventure: Daphni Jo Swimming

Therapies: Bella Manipulates Pool

NOTE: When you visit the site and see the category listings, click on one...then you will see all the videos under that category.

Remember to send us suggestions and even category recommendations!

We want you all to be a part of making RETT WE CAN a great resource!

Enlive! Apple Juice

Good Day RettGirls!

This week's featured product at RettGirl.org is ENLIVE! Apple Juice. You can find this on our website by going to Diet/Nutrition and clicking on Products.

I'm sure I am not the only one in the world of Rett Syndrome that is constantly dealing with diet and nutrition problems. Don't even get me started on gastric issues.

I'm a stickler for what products and supplements my daughter gets and when she gets them. My husband calls it my "hippie diet," but I believe it works for her.

I have been looking at the fact that since my tube-fed daughter gets only formula and water that we needed to get some fruits and or vegetables in her. The first thing that I heard over and over again was Enlive Apple Juice.

RettMom Kelly Butler swears by Enlive! Apple Juice and this is what she has to say:

"I have been giving Brooklyn Enlive Apple juice since the beginning of our Rett Syndrome journey. When her chewing became delayed I was looking for alternative ways to get more calories in her. Enlive is an Ensure product, each individual juice box is 6.7 oz and has 200 calories. It is also a bit thicker than your typical apple juice so for those kiddos that need liquids a bit thicker this might be an additional bonus for you!

It is great for kiddos that can drink out of the small juice box straws! However, Brooklyn is very particular about her cups so we just dump the juice from the box into her cup. It does come in alternative flavors but to be honest Brooklyn ONLY likes the apple juice! We order ours through our local Walgreen's pharmacy....we have been buying it there for so long that they give us a great discount now! "

Wow 200 calories in a cup or a tube snack. Gotta love it!

Do you have a nutrition product you just love for your RettGirl? Let us hear about it today.


Have a great week!


http://rettgirl.org/2009/08/enlive-apple-juice/


Terri V~For RettGirl



Disclaimer: This blog is for referral only. Proceed with caution before purchasing an item, trying a new therapy or any of the tips recommended by our users on this site. Girl Power 2 Cure, Inc. is not liable for unsatisfactory or harmful outcomes. Especially in referrals involving diet, supplements or therapy, please check with your doctor before proceeding.

Belly Buttons and Belts

Good Day Rett Girls!

Check out the neatest thing for our tube-fed girls! They are called Belly Buttons. They are fabric covers for your child's G-Tube! You can find these buttons at RettGirl.Org in our Product Reviews under Clothing/Shoes.

These cute little buttons come in packs of 7 for $14.00. I know we have all been through this scenario: pick your girl up and her peg shows time and time again. These make it less noticeable and frankly they're just plain fun!

I was a little leery at first about using anything but foam or gauze so I waited a few weeks of trying them out to post, and we just love them. We have had no irritation or sticking. In fact, I recently ordered 2 more packs and am awaiting their arrival.

What makes these so neat is that you can order girls' packs, boys' packs, or themes like Dora, Tinkerbell, Sesame Street and so much more.

This is the continuous feed Belly Belt. I believe she calls this one the "bells and whistles belt." We have huge problems here with our little night feeder flipping and tossing until her YPort comes open, or she wiggles her tube out. I also have one of these on the way. Can you imagine? No more "feeding" the bed!

Here is how to order: The designer has a web page you can order from through PayPal, but all her designs, fabric choices and products have to be viewed on Facebook by going to:

https://www.facebook.com/pages/Belly-Buttons

She is great about answering any questions you may have on Facebook before you place your order.

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From the designer:
Belly Buttons are washable, reusable pads for use with gastrostomy buttons or tubes. The pads are made of 3 layers ~ a fun pattern on top, flannel in the middle, and then backed with fleece. Closure is maintained with velcro.

Sold in sets of 7 for $14.00 (includes postage)
Sets include girl prints, boy prints, or neutral solids.
Your Belly Buttons are not made until the order is received through PayPal.
Delivery time is 2-3 weeks.

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Have a great week!
http://rettgirl.org/2011/10/belly-buttons-and-belts/

Terri V~For RettGirl

FREE Head Mouse!

Good Day RettGirls!

Boy am I super excited about this one. Today we have for you a free, yes FREE, Head Mouse for your computer. You can find this Head Mouse on RettGirl.org in our Products Reviews under Communication!

On Friday, Abby's teacher sent this to me in an email. I was amazed that after a few minutes, I had a free Head Mouse installed on my computer. It works just like any other Head Mouse or Head Tracking device except there is no dot or head gear to wear. You just need a USB Webcam.

You simply download, and within minutes you are hands-free on your computer or the internet. A big plus for RettGirls.

You control where on your head you would like to track, the seconds of dwell before it clicks and more. You can also turn it on or off whenever you like. I have been playing with it all weekend.

I think this is a very exciting product for girls that can be taught to head track. I do feel the need to mention this is not a free eye-gaze device. It tracks the movement of your head, so our girls with better head control could have some great success with this.

The best thing of all is that there is no risk, no wasted money. It's FREE!

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From the software website:

The program was developed to help people with disabilities use the computer. The main audience for this program is people who do not have reliable control of a hand but who can move their head. People with Cerebral Palsy, Spinal Muscular Atrophy, ALS, Multiple Sclerosis, Traumatic Brain Injury, various neurological disorders use this program and its predecessors to run all types of computer software.

Camera Mouse works as a mouse replacement system for Windows computers so it should work with just about any application program. For example people use Camera Mouse with entertainment programs, education programs, communication programs, web browsers, and so on. (See the Downloads page for some of the programs and websites that we have used with Camera Mouse.) Camera Mouse works best with application programs that require only a mouse and a left click and that do not have tiny targets. It's easier to use Camera Mouse with application programs that do not require extreme accuracy.

What equipment is required? A Windows 7 or Vista or up to date XP computer system and a standard USB webcam (or a webcam built into the computer or monitor). We do our development work with a Logitech HD Pro Webcam C910 or a Microsoft LifeCam Cinema. Camera Mouse works with other commercial USB webcams as well.

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Good luck and let us know how it works for you!

http://rettgirl.org/2011/10/free-camera-mouse/

Terri V~For RettGirl

Rett Syndrome Awareness Month - Mom on a Mission

It's Rett Syndrome Awareness Month - let's make some noise!

It's me, Terri. I am Mom, Rett Mom, Advocate, wife and all around Autism awareness terrorist. I run RettGirl.org and a YouTube channel called Rett We Can for Girl Power2 Cure.

Why? Well thank you, I’m so glad you asked. I hope you can pass on this blog and help us spread the word about the hundreds of thousands of girls fighting Rett Syndrome.


My 7-year-old daughter Abby has Rett Syndrome - an X Chromosome Linked form of Autism and the only form of Autism with a known genetic cause. Because the gene mutation is on the X Chromosome, it mainly affects girls, but there are a handful of boys that have it too and they are just as deeply affected.

The gene of which we speak is called MECP2. It is known as the regulatory gene between your brain and your body. It is the gene that tells every other gene when to turn on and off. Strangely, this gene doesn’t play much of a role until your child is between 18 months and 2 years of age. Up to that point you have a seemingly normal, typical child doing all the things they are supposed to do.

Once this gene kicks on, if it is faulty like in Rett Syndrome, everything start s to shut down. There is a rapid period of regression where most every acquired skill is lost. Most purposeful hand use disappears almost immediately and is replaced with a constant wringing, tapping or hand mouthing. All speech goes during this regression stage, and your child turns physically back into an infant where she will stay…trapped in her own body until a cure is found.

Good news! Rett Syndrome is poised to be the first curable neurological disorder. It was announced in 2007 that Rett Syndrome had been reversed in laboratory mouse models. It’s there and until we can get it funded in a way that gets it right for humans, our babies remain locked in a world they can only observe.

One major debilitating factor in Rett Syndrome is called Apraxia. Apraxia is like this: the will to carry out intent is there, but the physical ability is severely delayed or not there at all. Some describe it as having Autism, Cerebral Palsy and Parkinson’s all rolled up in one little girl.

Need to Knows:

• Debilitating neurological (movement) disorder that predominantly affects females.



• Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old.



• Caused by a single gene mutation that leads to underproduction of an important brain protein.



• The most severe form of autism.



• The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.



• Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.



• As prevalent as Cystic Fibrosis, ALS and Huntington's.



• Another little girl is born with Rett Syndrome every 90 minutes.



• Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

Why have I never heard of this you may ask? That’s why we are here today. To inform, educate and raise awareness so little girls like my Abby will no longer be held in the unknown.

Want to learn more about Abby and contribute to research? Follow this link to her personal story at Girl Power 2 Cure: http://girls.girlpower2cure.org/abby

Thank you - PASS IT ON!

Terri