RettGirl Resources!

Good Day RettGirls!

We hope everyone had a wonderful Holiday week.

This week we wanted to make sure that everyone know about our Resources page at RettGirl.org and the abundance of information we have there for you! It has taken alot of time and effort to get this all in one spot and at your fingertips, and we plan on adding more soon. It is our mission to be the GO TO place for all things that affect our girls!

We have information on:

RESEARCH

Rett Syndrome Research Trust

Website: http://www.reverserett.org/
Blog: http://www.rettsyndrome.wordpress.com/
Newsletter: RTT Watch
Twitter: www.twitter.com/rsrt

OTHER RETT ORGANIZATIONS:

International Rett Syndrome Foundation
Israel Rett Syndrome Center
Mikyla-Cure
Rett Syndrome Association (UK)
Rett Syndrome Community Foundation (North Carolina)
Rett Syndrome Research Assistance (Ukraine)
Stitching Rett Syndroom (Netherlands)

PAPERS ON RETT SYNDROME FROM SPECIALISTS:

Multi-Modal Communication Strategies for
Children Who have Rett Syndrome
Linda J. Burkhart

Optimizing Nutrition for Girls Affected with Rett Syndrome

Sara-Jane White, Doctor of Naturopathic Medicine

ABOUT “GIRLS WITH RETT SYNDROME”

LETTER FROM RJ COOPER – Pioneer in Assistive Technology
www.rjcooper.com

Back to School Tips From Parents:

Back To School Strategies for
Children Who have Rett Syndrome
GirlPower2cure

How to Adapt with PVC

PVC Assistive Tech

Websites

We hope you find many things you need here. As always we welcome your input. We could not have built this list without you!

We are truly dedicated in helping new and existing families live with Rett Syndrome with the most information and support possible.

Terri V~ For RettGirl

Holiday Tips from Girl Power 2 Cure!

Happy Holidays RettGirls!

With the Holidays upon us we wanted to give some advice for Parents, Friends and Families of RettGirls on how to handle the holidays,visiting,gifting and including the girls in your life!

Year after year we hear stories from parents who are just beside themselves with the stress of the holidays. From family who don't know how to interact with their girls, to not knowing what to get them. I have had several parents tell us that they are ignored or not included.

Our Mother site Girl Power 2 cure has come up with some great tips on how to handle the holidays with ease and we'd like to share them with you.

Stress and Inclusion


The biggest thing to overcome during the holidays is just pure stress. Everyone
out there feels it, but when you have a disabled child thrown into the mix, stress
can rise to a whole new level. Stress of disappointment over your daughter’s
condition, stress of your daughter’s anxiety as the routine and activity level
changes, stress of how family and friends act towards her, stress of travel, stress
of food choices. Mix this in with some certain lack of sleep and it is a recipe for
disaster.

So, think about changing things around, being more open to doing things
differently, and being more open with those around you about what they can do to
help make this holiday a more positive experience. Do not try to fit your daughter
into your traditional routine. It is time to make some new traditions, keeping her
needs in mind.

Handling anxiety and sensory overload --

two key issues for Rett girls.

Anxiety often comes from not knowing what to expect. Talk to your daughter about
events coming up several times before they happen. Explain to her where you are
going, who will be there, what will happen, and what is expected of her.


TIP: Consider bringing along a portable DVD player with her favorite videos
as a fallback. Although it is heartbreaking to feel she is not included,
sometimes it is just better for her to be engaged with something familiar.


Sensory overload can strike us all. If your daughter can’t tolerate being amidst
all the festivities – gift opening, big dinner, singing, etc – be sure to have a plan for
her and talk with her about it.


TIP: Tell your daughter, “Today is a very special day. We have people
coming to visit. If you are feeling anxious, you can stay in your room with
your music or television. And then this afternoon we will have a special time
where each person will come to you and spend a little time with you and give
you a gift. I will help you give them their gift, too. Maybe we can even have
pictures of each person and you can pick you who would like to see and
give your gift to next!”


Creating a more relaxing environment:


Rett girls usually love twinkly lights. Consider having them in more places than
around the tree and outside. How about in her room?

Opening presents: Traditional paper gift wrap can be a nightmare. Rett girls will
get paper cuts and even try to stuff the paper in their mouths, so maybe someone
else handles opening for them. But imagine the combination of loud ripping paper
and someone else opening your gift?


TIP: Wrap her gifts in fabric. Even if it is just one of your colorful T-Shirts
with a big bow! It will look pretty, feel soft, and it will be quiet – and she can
actively help open her own present!



Help from visiting family members and friends:

This is a great opportunity to be a really big help! Even just 5 or 10 minutes here
and there with your special Rett girl will be very welcomed. Consider these things:


Read her a book.

Brush her hair and put pretty bows in for her.

Help feed her.

Take her for a walk.

Give her a foot massage.

Listen to some music together.

Sing her a song.


Tell her a story from your past holidays.


You can find this and many other tips at:


http://www.girlpower2cure.org/holiday-tips.html


Happy Holidays from All of us at RettGirl and GirlPower2Cure.org!

Snuggie!

Good day RettGirls!

Oh Man It's cold outside...for most of us... :0)

This week's featured product is the "As Seen On TV" Snuggie. We have this product listed on RettGirl under our Tips and our Holiday Guide.

We received a Disney Princess Snuggie for our daughter's birthday and soon learned that it could be used for much more than just cuddle time.

We lay it on the floor for floor time and watch her scoot her little self around the Snuggie so she can look at all the designs and kiss the characters. She is now doing 360's on the floor!

Our biggest discovery is that we can use it as a wheelchair blanket for about one-fourth the price we are finding wheelchair blankets for online. Love it when that happens!

This morning the windchill was -1 degrees. We placed the Snuggie on top of her transport chair and the chair over the heating vent in the kitchen. Everything was getting nice and toasty while we got her ready for school.

Within 10 minutes we were able to put her in her gear and wait at the door for the bus. She had her winter jacket, stocking cap and Snuggie on. We wrap and tuck the sleeves around her hands because we gave up on mittens a long time ago. She really does behave as if she is on a clock to see how fast she can get them off after we put them on. No worries with the Snuggie.

There was no playing of the Brr Brr shiver game and she clapped and sang all the way to the bus!

Highly recommended!

http://rettgirl.org/2010/12/snuggie/

Good Luck!

TerriV-For RettGirl!

Hatchback Shoes!

Good Day RettGirls!


This weeks featured product at RettGirl.org is Armbraces.com's Hatchback Shoes! You can find this shoe in our Product Reviews under Clothing/Shoes.

These shoes have been suggested to us time and time again for our girls that wear AFO's. We have heard rave reviews from parents who searched for months and years to find a shoe that would fit their girls.


I personally have spent days in shoe isles pushing and shoving my girls feet and braces into shoes that were sub par. The toe is always too narrow or I feel like I am going to pop her knee out of joint or break her ankle just to get a shoe on in the morning.

From the company website:

Every Hatchbacks shoe incorporates a patented hinge system called "Easy Fit"
that's as simple as A, B, C. The "Easy Fit" system is designed to facilitate ease of
entry and egress from the shoe by pivoting open at the hinge. The shoe remains
firmly closed by a Velcro fastener that is also very easy to use.

To make an Elite shoe, we took our "Easy Fit" system and created a custom last
molded around a brace. This new last provides extra width around the toe box,
extra girth around the ankle, and more room around the heel. This means that
most children will be able to wear Hatchbacks Elites that are the same size as
their foot size. No more wearing shoes two sizes too big! We took this specialized
last and added a lightweight sole, quality materials, extra tough stitching, and
great contemporary styling.

One RettMom says, "My daughter has been wearing these shoes for over 3 years now, they are made for children with AFO’s, they are so easy to take off and put on and they are good quality!"

This same Mom used to chew my ear off every time she saw me trying to shove my daughters foot into a store bought shoe!

Like with all of Armbraces products they have an excellent sizing chart to ensure you get that just right fit for your child.

Your shoe search is over!

http://rettgirl.org/2009/08/hatchback-shoes/

Good luck

Terri V-For RettGirl

Whole Body Vibration Platform

Good Day RettGirls!

This weeks featured product at RettGirl.org is the Whole Body Vibration Platform!
You can find this item in our Product Reviews under Sensory and under Therapy!


What in the world is Whole Body Vibration?


Excerpt from Company Website:

WBV vibrates the entire body. The vibrations generated when the motor underneath the platform vibrate the person standing on the platform. These vibrations cause the muscles to lengthen and contract.

An immediate effect of WBV is improvement in circulation. The rapid contraction and relaxation of the muscles basically works as a pump on the blood vessels increasing blood flow.

WBV is highly suited to people who have difficulty training because of Muscle weakness, illness, disorders, weight or injury. It is also highly suitable for persons who want to stimulate and strengthen their muscles without stress on joints.

WBV effects described in studies include: muscle strength, improved bone density, improved blood circulation, toning, cellulite reduction, heightened secretion of hormones associated with exercise and depressed response of hormones associated with stress.

Vibrations cause compression of the bone tissue, activating the bone building cells (osteoblasts), while reducing activity of the cells that break bone down (osteoclasts). In preventing falls and the bone fractures that often result, increasing bone density in not the only important issue. Increased muscle power, posture and balance are factors to consider. Studies involving elderly subjects have shown that all these issues can be improved using Whole Body Vibration.

Research has shown positive effects in pain management and the treatment and prevention of osteoporosis and other ailments. Vibration is a far better alternative than dangerous osteoporosis drugs.

WBV has been demonstrated to significantly increase muscle performance in sedentary people. You entire body musculature, as well as your internal organs and glands are positively affected by WBV stimulation. Even the brain experiences physiological changes. Studies have shown better rehabilitation of injuries or surgery than traditional methods of therapy. It is very good therapy if you have conditions such as arthritis, fibromyalgia or multiple sclerosis.

Wow, right? So, we thought we'd give it a shot. Two of us at RettGirl have these machines for our daughters. For me I was a bit scared to try my girl on it because of her tremors and low body awareness. I thought it would scare her and I can be a wee bit overprotective..Ok a lot.

Most machines come with various levels ranging from low to high. We put our daughter on her machine and timed it for one minute. I stood by ready to rip her off if she started screaming and set the timer for 1 minute. I was amazed as she stood there giggling and wiggling for 3 minutes!

Like any therapy it's something you have to do and stick with to see results. When we use it every day or every other day we see better balance and better bowel motility with her. When we forget we notice it. She is more easily constipated and off center.

We work her whole body on it by standing her on it and holding on of course. We also work her arms, which are very weak my having her kneel next to it and placing her hands on the machine. The vibrations stimulate all the muscles in her arms and back just by kneeling there, which also helps strengthen her core.

The Whole Body Vibration Platform is a favorite here at RettGirl and comes highly recommended by those of us who have one.



One of our Superstars in action!








Good luck!

Terri V-For RettGirl

RettGirl. THE Holiday Gift Resource!

Good Day RettGirls!

We have been working hard for you behind the scenes to make RettGirl.org THE Holiday Gift "go to" place!

Much time and research has been put into finding gifts for those oh-so-hard-to-buy-for children of ours. I know many of us spend days walking up and down the isles in a daze. We have compiled a list of tried-and-true gifts that parents have recommended and a few new things that our own girls love!

We have so much to offer at RettGirl as a whole but wanted to make a "go to" list to make Holiday shopping a little easier on everyone!

You can check out full list (with descriptions) at the end of the blog or click the holiday button and view the list at RettGirl.org! We have kept everything in the under $40.00 price range so it can be easily attainable and hintable for those Grandparents, Aunties and Uncles!

My First Picture Dictionary (Disney Little Einsteins)

Sesame Street: Elmo’s A-to-Zoo Adventure:Wii

Natural Aquatics Frog Aquarium with 2 Frogs

Sing-A-Ma-Jigs

Zoobies

Living Aquarium

Signing Time

Mini Massager

Glo E Light Up Bear

Karly Wahlin: In My Own Voice

My Pal Violet or Scout(for boys) by Leap Frog

Ocean Waves Music CD

Talking Photo Album

Fridge DJ Magnetic Learning Piano by Leap Frog

Alphabet Spin and Sing by Leap Frog

We are iPad crazy here at RettGirl! We have all seen the videos and stories coming out of the Special Needs world about how awesome this gizmo is for kids like ours. One of us finally got access to one and went though each recommended app with her own child to see how it would work with a RettGirl! Click on the button above to check out her recommendations!




We now have a button on RettGirl.org to directly to the GP2C shop to purchase magnets, tattoos, gift tags, CDs and more! We are so excited about our new Gifts that Raise Money for Rett Syndrome link. What an awesome idea! Girl Power CD's are so much fun! You can now download the CD through CD BABY as MP3 files right off the website! How cool is that? Tattoos, Gift tags, magnets..so much to choose from! Go Girl Power!

We can't wait for you to visit. Take a look around and buy something special for a girl you love this holiday season!


Best Wishes!

Terri V-For RettGirl


GIFT LIST [click title to visit on RettGirl.org and get ordering information]

My First Picture Dictionary (Disney Little Einsteins)

Join the Little Einsteins for a brand-new learning experience! Preschoolers will have a blast learning vocabulary words with this new dictionary. Featuring beautiful full-color photos, and fun Little Einsteins illustrations, My First Picture Dictionary includes over 900 words and definitions organized by situations common to a preschooler’s world. A big winner for grade school girls!

Sesame Street: Elmo’s A-to-Zoo Adventure:Wii

Recommended from a Mom who's daughter can sit for hours watching her siblings play the Wii while grasping for the remotes. This game comes with a special remote with a parent help feature!Teachers letters through engaging mini-games
Easy to follow audio-visual directions that preschoolers can master on their own
Use the second Wii Remote to drop-in and assist your child when needed
Game difficulty adapts to your child’s level
Wii and Nintendo DS versions include Gameplay Helpers to simplify gameplay for your child.

Natural Aquatics Frog Aquarium with 2 Frogs

Not exactly a toy but a great gift Non the less.The Natural Aquatics “Living Aquarium” is a natural and balanced eco-system designed to function exactly like a wild aquatic biotope, all in a small package Perfect for the home, office, classroom or anywhere, the Living Aquarium provides an almost carefree way to bring a little nature into your life. The African Dwarf Frogs are the entertainment. The Snail is the janitor eating algae and leftover food. The Aquatic Plant oxygenates the water. And the Living Gravel at the bottom of the tank biologically filters the water converting the waste (ammonia) from the animal to food (nitrates) for the plant which in turn takes that energy and produces oxygen All you have to do is feed the tank twice a week and change the water twice a year Your Living Aquarium will be a fun addition to your desk or home that will educate your friends and family about the wonders of the natural world. Colors may vary.

Our daughter’s school has these in the office. One little tank on every ones desk and my girl screams,giggles and claps every time she sees them.

Sing-A-Ma-Jigs

Free-spirited, offbeat character that features unexpected laughter and excitement with every interaction. Features three modes of play including chatter, singing their own song or singing in harmony with their other Sing-a-ma-jig friends.
In chatter mode they speak their own language full of jibber and jabbers..
They always harmonize with each other perfectly every time.
The more Sing-A-Ma-Jigs you collect, the larger the chorus.

Zoobies

Olivia, the fun loving, adventure seeking pig will easily become your child’s best friend. From her cute piggy snout and adorable red dress, to her creative charm, Olivia is by far the nicest and most playful pig around. The Zoobies team has worked hard to bring Ian Falconers storybook character to life. Not only is Olivia a plush toy, but also a pillow with a uniquely printed cozy coral fleece blanket zipped inside. Zoobies come in many characters and animals for every childs favorite snuggle buddy.

Living Aquarium

ealistic animated video. Play any Scene individually or all together. The Screendreams videos are the videos that are usually playing on the flatscreen in Doctor and Hospital waiting rooms.

Easy-to-use / Continuous play / NTSC / Dolby Digital Natural Sound Effects / Soothing soundtracks / Vivid picture resolution / Realistic animated video. Play any Scene individually or all together.
We play them at home during quiet and relax time.

Signing Time

These videos are so much fun. Sign was not something we had really considered once our daughter lost her hand function until she was placed in a class with a hearing repaired teacher. She responded so well when she was signed to as well as spoken to.

This line of videos is by the same woman that does the signing songs on Nickelodeon and Nick Jr. She really makes it fun.

Mini Massager

Our PT first introduced us to this Mini Massager in therapy. It is wonderful for relaxing those tight muscles in the back and shoulders without over stimulating your girl. We use it on her hands and feet when circulation is poor and the tootsies are getting cold.

Also available at Walmart and Walgreens

Glo E Light Up Bear

Night lights are a thing of the past! This magical light up bear is sure to help comfort your child’s fear of darkness. Just squeeze the bears’ hand and watch it light up and change colors like you’ve never seen before. Glo-e was created to encourage a peaceful night sleep with nothing but sweet dreams for the little ones. Get the best of both worlds by having a night light and a teddy bear all in one!

This bear goes with us everywhere and puts our daughter to sleep every night. A must have! Many bears to choose from.

Karly Wahlin: In My Own Voice

Collection of exquisite, lyrical compositions created by a remarkable young woman with Rett Syndrome who writes her songs one note at a time with the help of a music therapist. Features piano, viola, and two poems.

My Pal Violet or Scout(for boys) by Leap Frog

RettGirls absolutely loves this toy! You connect it to the computer and teach it to spell their name say there name. You can also program their favorite color, food, and animal and it sings songs with this information. It also plays classical good night melodies. One Mom reports.. It says “Good Night Elayna”, “I love you Elayna.” The look on her face when it first said her name was classic. It is worth it to get it if my girl loves it I know yours will too! It is so hard to find something to interest her.

Ocean Waves Music CD

Great for inducing calmness and sleep. Couldn't we all use a little calmness and sleep. We know a few parents that bought 2 to have one in their own rooms.

Talking Photo Album

Easy-to-use speech output device that holds standard 4″ x 6″ photos. The Talking Photo Album includes a total of 24 pages, each with a individual message capacity of 10 seconds. Insert photos or picture/text cards into the transparent sleeves and record corresponding messages. User squeezes Play button to activate speech.

Great for talking stories, communication books, step-by-step instructions, memory books and personal information.
Two AAA batteries (included).

Fridge DJ Magnetic Learning Piano by Leap Frog

Turn up the learning with a brilliant show of lights and music that encourages children to explore numbers, letters and counting. As the numbers and letters light up, the upbeat music inspires physical movement, too! Very easy to manipulate and fun in the kitchen.

Alphabet Spin and Sing by Leap Frog

This toy plays music and teaches the alphabet with the slightest touch of swipe of the hand. One of our daughter’s favorites.

Diaper Doublers!

Good Day RettGirls!

This week at RettGirl.org we are featuring the Tranquility TopLiner Mini Booster Pad Small Diaper Inserts or Diaper Doublers as we call them. These Diaper Doublers can be found in our Bath/Toileting category under Product Reviews. Online these are reffered to as booster inserts,diaper doublers and diaper inserts. The brand we are reviewing here is the Tranquility.

We know that incontinence is something most if not all of our girls deal with and we wanted to share this wonderful way to make diapering a little more efficient.

We have all tried the Maxi Pad, Overnight Maxi's and smaller diapers as inserts for our girls...especially at night. I know at least one Mom who has spent big bucks trying to find something that will absorb more without bunching up, coming apart or sticking to her daughter. Not a fun thing in the AM.

I had another RettMom...such experts.. send me the link to the Diaper Doublers we have on RettGirl.org. I was skeptical so I went to the lab. The lab being the living room floor, 2 diapers a Maxi pad, a Diaper Doubler and a couple of cups of water.

I slowly poured 6 oz of warm water over the length of each pad and diaper and waited about a minute. The diaper with the Maxi Pad was squishy and overflowing to the touch. The Tranquility pad produced no liquid and had slightly expanded. When I removed each pad the Maxi ripped and fell apart. The Tranquility pad came right up and the diaper underneath was dry. Yes dry. So I put the pad back in the diaper and poured 4 more ounces of water into it. After a minute or so I lifted the Doubler up and saw that it did truly absorb the first 8 oz or so and when full the remainder went into the diaper. I again removed the pad and there was still no tearing or coming apart. The search was over! This was the small pad. They come in 3 absorbency levels! Woo hoo!

My daughter has a pack they use at school and they put one in after her lunchtime feeding..to spare her that embarrassment to overflowing on the playground. Which did happen once. My girls was inconsolable and I had to go pick her up. It hasn't happened since.

I use them with her at night and I have to say that if we have a leak it's because the diaper itself was not put on right or she had had a little extra Miralax on her belly ;)

http://rettgirl.org/2009/09/diaper-doubler/

Happy Diapering!

Terri V-For RettGirl