Back to School!

Good Day Rett Girls!

With the new school year quickly approaching we want to remind everyone about our School Stuff category at RettGirl.org!

As the new year starts I know we are all anxious about new school, new teachers, aides and IEP's.

Our School Stuff category is a place for everyone to use as a resource ... an abundance of information is just a few clicks away. Our resources are gathered from people all over the country. We welcome your additions, too!

Here is the place where you and your daughter's team can find information on books, websites, resource papers, software and links about Education and Rett Syndrome! Tons of stuff here that really goes into how a RettGirl learns. You will find invaluable information on:

Apraxia and how a RettGirl's brain works with her body
Eye gaze
Patience
How to ask
How to respond
Lack of Consistency does not mean lack of intelligence
Therapy Tips
Equipment and software that works

We have invaluable papers we urge you to go over with with your child's team.

Linda Burkhart's- Multimodal Communication Strategies for Children Who Have Rett Syndrome

RJ Cooper's-About "Girls with Rett Syndrome"


OTHER SECTIONS:

Communication

Websites

Sensory

Positioning

Care Notes

IEP Bank


Apple iPAD page with info and helpful apps


Eyegaze System Hub for sharing experiences/ideas with others who have the same device

We urge you to pass this information on to your teachers, schools and therapists!

Have a great day!

Terri V~For RettGirl

Yes/No HD Simplified Touch-Revisited

Hello RettGirls.

After meeting so many people this weekend who showed an interest in Abby's iPad (and the programs on it) I wanted to revisit a previous post where I demonstrated the app YES/NO HD by Simplified Touch.

There have been a few changes. The best is the whole app with all the features you will see in the video below, are now included for the low price of $3.99. You will see in the video that this is more than worth the price for what girls like ours are looking for.

Good Day RettGirls!

This app and MORE can be found by clicking on our iPad review button on our home page or by clicking here.

Below you will find a video demonstration of this incredible app and all of its features!

Enjoy!

Terri V~For RettGirl

X Panda R82 High Low Dynamic Seating System

Good Day RettGirls!

This week I want to tell you about the X Panda R82 High Dynamic Seating System.

I came across this awesome seat last week while visiting am incredible Rett family. Their daughter Brooklyn had the X Panda R82 High Low Dynamic Seating System that you see above.

You can find this system at RettGirl.org in our Product Reviews under Positioning and Mobility!

I was so impressed I took out my phone and starting clicking away. Not only could they use this as a TV chair, they could use it for just about anything.

They took it to the table where it can be pumped up or down to fit whatever table or desk she is at. It has lateral side rests that keep her from leaning (an all important function with RettGirls)

It has an incredible head rest. Belts, straps and even a vest for those with extremely low tone.

Not only does it go up and down it can be tilted for feeding or for sleep. It has inside and outside bases for the ability to cruise the house or the neighborhood.

This X Panda R82 High Low Dynamic Seating System comes in 4 sizes and has many more accessories!

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From the company website:

x:panda is a multi-adjustable dynamic seat, delivered in 4 different sizes - each seat with up to 10 cm in seat width and depth adjustment coupled with sliding back growth.

The back is dynamic, making it possible for the child to extend and push back against relatively light resistance and then regain the desired sitting position. The back is lockable which could be preferred in feeding situations. The back can also be angled to make it possible to seat the child with either an open or closed hip angle.

Accessories include:

Head supports For correct position and support.

Non-dynamic gas spring

Swing-away side supports

Fixed side supports

Vests and belts For added support in a variety of possibilities.

Overarm supports To support the upper arm. The support is adjustable in height and width.

Tray (Please find more tray options in the accessories section.)

Arm rest for tray Provides forearm support.

One size
Toy bar for tray Grab rail fits in the same position.

One size
Grip handle for tray

One size
Quick lock For fast and easy adjustment of the side supports.

One size
Foam back plate Fills out the gap between seat and back.

Armrest Adjustable in height and angle.

Seat wedges Provide control and positioning.

Activity center

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I really do think you will LOVE this all-in-one Seating System!

Have a great week!

http://rettgirl.org/2011/07/x-panda-r82-high-low-push-chair/

TerriV~For RettGirl

Your Chance to Win a $15,000 Eyegaze Computer!

Good Day RettGirls!

Oh how I wish I qualified for this ... but since I work with Girl Power 2 Cure, I am not eligible.... but YOU ARE!

The MyTobii P10 is THE system Abby has been tested on, the one most used in Rett Syndrome...at least with the girls we know. AND Girl Power 2 Cure is raffling one away!

Can you imagine? A voice for your child? You can ask her what's wrong, what she wants? She can tell you she loves you.... She can tell you what hurts?

How many of you have dreamed about an eye gaze system? I know that I wish we had one. I wish every single day.

Here's your chance to get one ......

All while raising funds to support Girl Power 2 Cure! No more fighting with the schools and insurance if you win???

How does it work?

>>for those in need of a system<<

Rally your friends and family to purchase tickets in your honor! If their ticket is drawn, you win the MyTobii P10 Eyegaze System and they win a $500 Visa Gift Card.

**Open to US Residents Only**

You print our RAFFLE FORM AND TICKETS, collect donations (by check or online), and mail in the completed forms and tickets.

You can also start a TEAM PAGE to get online donations for your team.

REMEMBER: Whether you get donations online or send checks via mail, you must mail completed RAFFLE FORM AND TICKETS to Girl Power 2 Cure for them to count.



>>for those wanting to support a team/person in need<<

PRINT RAFFLE FORM AND TICKETS and mail with donation to:

Girl Power 2 Cure
2891 Breakers Court
Amelia Island, FL 32034

Or see if they have an online team if you would like to donate with a credit card. If not, contact them to see if they are interested in having a team so they can take donations online!

Visit the P10 RAFFLE WEBPAGE for more information and official rules.


KEY LINKS:

DOWNLOAD THE
RAFFLE FORM
AND TICKETS

DOWNLOAD THE
INFO FLYER

START AN ONLINE
FUNDRAISING PAGE

Good luck to EVERYONE!!!


Terri V~For RettGirl

Beds by George

Good Day RettGirls!

This week at RettGirl.org we are featuring the hand crafted safety bed by Beds by George. You can find this gorgeous bed and more like it in our Product Reviews under Sleep!

This bed actually came to my attention when I first started by insurance fight for a safety bed for my own RettGirl. After several years of fighting insurance, I was finally presented with a well padded hospital bed that my now almost 7 year old is climbing or scooting out of. Even with 18-inch-high padding from head to toe, the best bed our insurance would pay for is NOT a safety bed.

The beds at Beds by George are absolutely gorgeous and custom made. They come in 2 styles with more choices than you can count.

Whether you choose one of the Dream series or Slumber series we think you will find these beds an awesome choice for a safety bed without that box or medical look of some other beds.

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Testimonials from actual customers:

Guillarmo from California said, "It is gorgeous and doesn't have the institutional look...it looks, feels, and is solid. Thank you. I just can't stop looking at it. It is a work of art!"

Kathy from Maine said, "This is exactly what we have been looking for!"

Annabelle from Ohio said, "this is so beautiful."

Cindy from Indiana said, "the bed is working great! It is so sturdy...we could do an infomercial."

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We have heard that the company is incredible to work with and they provide sample letters for insurance and funding sources.

Have a great week everyone and get some sleep!

http://rettgirl.org/2011/07/beds-by-george/

TerriV~For RettGirl

Diet/Nutrition

Good day RettGirls!

This week we are going to highlight our Diet/Nutrition category at RettGirl.org. We are hoping everyone will find something here that can help their RettGirl with those all important nutrition tips, recipes and products.

Recipes

For those of you who have contact with other families, you know that each girl's little tummy works differently, so we have separated our recipes into separate allergy/tolerance categories.

Quick/Easy- We have several 5-10 minute recipes than you can divide and freeze for heat-and eat-meals on the go or for school.

High Calorie-We are looking for high calorie recipes for those girls that eat by mouth. Easy to make and easy to serve that will help pack on those pounds!

Gluten Free-We have recipes and sites to help you learn how to get that wheat and yeast out of your girl's diet. Many girls, like my own are allergic to wheat and yeast and it took me forever to learn the signs and get her tested. We are always looking for more!

Dairy Free-Learn how to replace those milk products with nutritious alternatives like rice, almond and coconut milk without breaking the bank!

GFCF-Wheat and milk allergies together affect a ton of our girls. Find recipes here or submit yours today!

Supplements

From liquid vitamins to tummy relief medicine. We have many products here that you really are not told about until you hear it from another Rett parent.

Products

Calorie, fiber and protein boosters, grinders, wheat free pastas and more!

Tips

Calorie and fiber tips. Benefits from juices and oils!

Resources

Papers on nutrition, websites and more!

We are always looking for info from you,our experts to help RettGirl grow. Please submit your ideas,tips and recipes today!

Happy tummys! And, please, proceed with caution and make any changes slowly and with medical consent where necessary.

http://rettgirl.org/dietnutrition/

Terri V~For RettGirl

My Pool Pal Swim-Sters

Happy Summer RettGirls!

This week at RettGirl.org the feature is My Pool Pal Swim-Sters - Special Needs swim diapers. You can find these swim diapers and more by visiting our Therapies category.

In the past few weeks I have taken my daughter swimming several times. She thinks she's a little fishy and it's hard to keep her out of a bathtub or pool if she spots one.

I have been struggling as of late to get the largest size, store-bought swim diaper on her. I had a friend who just happens to be a Rett mom with a little fishie of her own direct me to My Pool Pals and their line of Swim-Sters Diapers.


When we got home I asked my daughters OT where she thought I could find a larger, worth the price swim diaper. Her first response was,"There is this great special needs company called My Pool Pal."

I was pleased to find that My Pool Pal offers a whole line of disability swim products from infant to adult. That includes sized 6-8 - XXXL


The swim diapers come in disposable and reusable. The diposables can be washed and reused until soiled. The reusables are just that. A rep told me today that the children usually outgrow them before they outuse them.

They are also endorsed by Easter Seals and The World Waterpark Association!

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From the company website:

Swim-sters special needs swim diapers are perfect for anyone who requires a diaper while swimming. Plus, since they are designed to be worn discreetly under a swimsuit while helping prevent harmful bacteria from entering the water, they are perfect for individuals with bowel incontinence. All of our special needs flotation swimsuits and special needs swim diapers are available in a wide variety of sizes, and can also be custom made for larger sizes and other specific needs.

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Good luck and Happy Swimming to you all!


To order from My Pool Pal direct by phone call: 1-800-453-9399
or
order online through our link:
http://rettgirl.org/2011/06/swim-sters-swim-diapers/


Terri V~ For RettGirl