Happy Halloween!

Hello to all Rett families out there! I hope you all have a wonderful weekend braving the Halloween madness -- both fun and scary, too!

Some years have been great, others we just sit out, hang back and I pass out candy while Sarah watches a video.

We never know until it's time to head out what it will be like. But, if we do make it out this year, it will be the first year that Sarah will be WALKING to Trick or Treat.

We are just going to go to the end of our street and back, but it will be HUGE! Hopefully some scary kid in a freaky mask doesn't jump in front of her and scream his head off and ruin the whole thing, right!?

If you are planning to head out and would like a little something to pass out about Rett Syndrome, we made up these little printed slips that we hope you like! They are available for download by going to http://www.girlpower2cure.org/gp2c-files/halloween-note.pdf.

ENJOY! And remember, if you have incorporated our GP2C flower into your pumpkin design or costume, we'd love a copy of the photos! Actually, we'd love copies of any photos of your girls, too!

All the best,
Ingrid Harding
Girl Power 2 Cure

KidWalk Gait Trainer/Stander

Good Day RettGirls!

This week, at RettGirl.org we are featuring the Kidwalk Gait Mobility System. You can find this exceptional product in our Mobility Category under Product Reviews.

A few weeks ago My RettGirl and I were fortunate enough to see this product in action at a State Horse show. I was stunned to see just how incredible this Gait trainer/stander/walker really is. We watched in awe as a very small child maneuvered it as a walker over grass and rocks and how it held them in place when they got tired. We just had to go up and ask the parents about it.

The KidWalk can be used as a walker as you can see above but can also be locked into place and used as a stander. With just one add on it can be used as a gait trainer which we were told was really helpful before this particular child was able to move on their own. The mother demonstrated how they use in in therapy by just giving a little nudge on the handle bars at the top to signal "go" for the child and off they went. We were so impressed! Made me really wish I had known about this before we ordered our girls system that sits in a corner of her therapy room because it is just too difficult for her to operate.

KidWalk is an innovative pediatric dynamic mobility system that affords freedom of exploration while safely supporting the user. Unlike a gait trainer, the KidWalk has a large mid-wheel configuration that encourages upper-body rotation over the pelvis while allowing upper-extremity freedom. The dynamic action allows lateral weight shift and simulates a natural gait pattern. KidWalk positioning options provide various levels of support to accommodate maximum freedom in upper extremity movement.

The various wheel configuration and small turning radius allows exceptional maneuverability. This is key in affording a child access not only to their home and school environments, but, encourages exploration that has been proven to enhance their cognitive and social development.

Tool-free adjustability is quick exact and easy making KidWalk ideal for schools and institutions. Easy to use, one hand height adjustment mechanism allows quick positive adjustments while the child is in the unit. All positioning options swing away to allow easy placement and positioning of user.

Allows therapeutic adjustment for use in ambulation and therapy oriented activities. Seat and support system move with the client allowing the natural movement of the body while reducing weight and fatigue.

Awesome features of the KidWalk!

•Mag Wheels
•Padded Seat
•Anti Tip Supports
•Lower Back Pad
•Tool Free Adjustment
•Lighted Casters
•Adjustable Axle Positioning
•Two Piece Transport Frame
•Quick Release Axles
•Dynamic Weight Relief

You can check out everything you need to know about this incredible mobility system by clicking below

http://rettgirl.org/2009/08/kidwalk-gait-trainer/

Have a wonderful week everyone!

Terri V-For RettGirl

Bear Hug Vest

Good Day RettGirls!

Let's talk Sensory!

This week we want to tell you about the Bear Hug Vest we have listed at RettGirl.org in our Sensory Category.

A few months ago I had my daughter in outside PT at a local children's hospital. We were having a hard time with getting her to do anything outside of home. At home she will wobble walk and participate in Pt type activities but outside she just seemed to want to hand mouth and tremor.
After weeks of frustration from not getting my girl to walk and watching her stop and tremor in doorways or pattern changes in the floor her PT had some sort of epiphany.

Within seconds of standing her up and putting the Bear Hug vest on my daughter she was all but running through the room. We sat there in awe as we didn't have to hold her hand and she just cruised from room to room,without the tremor pause and complete freeze and lock of her whole body at thresholds and doorways.

I ordered the vest that night. We use it at home when she is up cruising and dancing in front of the TV. We use it on walks around the neighborhood. I have found I am less exhausted after an outside walk with her because I am just holding her hand and not wrestling with her entire body to keep her from falling the whole time.

My daughter suffers from extremely low body awareness experiences vertigo because of it. A no center of gravity type experience for her. A terrible thing for someone who wants to be moving constantly.

We have also used the vest on days that she is doing her lean while sitting. She has scoliosis and always wants to lean to the right when sitting. We like to use the Bear Hug because it keeps her upright without the rigidity of other types of vests.

I have included a demonstration of the vest with my own RettGirl taken just last night. I think you can see the difference immediately in her self confidence.

http://rettgirl.org/2009/11/bear-hug-vest/
Enjoy!


Terri V-for RettGirl.org

Pathways to Learning in Rett Syndrome

Happy Monday RettGirls!

Today we want to tell you about this wonderful book titled Pathways To Learning In Rett Syndrome by Jackie Lewis and Debbie Wilson. We have this incredible resource under Books, Communication and School Categories at RettGirl.org

I stumbled upon this book right before my own daughter started pre-school. I was in my local book store trying to find something, anything in the Health and Special Needs section that would help me explain Rett to the school as she was about to have her placement testing and I was scared to death that they wouldn't get it, that they wouldn't get her.

After an hour or more of pouring through the Autism, Sensory and Neurological disorder books and manuals I had found nothing. Only that one little paragraph in the back of the spectrum book that had made me pass out months before.

I went to the customer service counter and asked them to type in Rett Syndrome and only a handful of titles showed up. The clerk then remembered that she has ordered this book for another parent not too long before. She took a look at my girl and told me she would order the book and give me 72 hours to look through it and if I didn't want it I could return it to the store for a full refund.

This book didn't get returned. Within hours of receiving it I had page after page highlighted on how Rett Syndrome affected my own daughter. Before this book I had no idea how to explain Apraxia and how you have to wait for an answer. This book has so many things that we as parents see and know but don't necessarily know how to articulate in a way that an educator or therapist will understand. You will find it all in this book.

I wish someone had told me about this wonderful resource and that it wasn't something I had to search for and stumble upon on my own. This is exactly the reason RettGirl.org was formed. So all parents, caregivers, educators and doctors would be a click away from invaluable information to make life any easier on all of us affected. That is our our mission.


http://rettgirl.org/2010/08/pathways-to-learning-in-rett-syndrome/


Terri V- For RettGirl

Special Tomato EIO Pushchair

Happy Monday once again RettGirls!

Today we are talking mobility! We want to introduce you to the Special Tomato EIO Pushchair. An all purpose chair that will support your girl for up to 90 lbs!

We know many of you are looking for an all purpose stroller that is versatile and comfortable. You can find this Pushchair located under our Mobility category at RettGirl.org

The Special Tomato® EIO Push Chair is the best of both worlds…a special needs stroller that provides mild to moderate positioning support AND a light-weight stroller that provides all of the bells and whistles that make it easier for the caregiver on the go!

Standard features include:
•Padded seat and back laterals
•Padded head pillow
•Canopy
•Recline available through angle adjustable back rest (25º ~ 75º from full upright)

At $449.95 you will find that this chair is almost half the price of other chairs without all the standard features.

We take this chair with us everywhere. It is awesome for siblings sporting events with it's all terrain wheels. We take it to church and family events as it easily reclines for feedings and diaper changes. I personally hear, "Where did you get that chair?" at every Rett Event we attend.

A big plus is that you can use the Special Tomato liners and sitters with this chair for extra support in the classroom and for long days on the go!

Check out this awesome product and many many more under our Product Reviews and Mobility Categories at RettGirl.org!

Terri V- For RettGirl