Tuesday, February 21, 2012

Tube Feeding Resources

Many girls with Rett Syndrome need to be tube fed either exclusively or as a supplement for various reasons including aspiration and failure to thrive. The decision to have a feeding tube placed is a very difficult one for parents to make. There are so many emotions involved.

After coming home post-op, all a parent wants to do is make their girl comfortable and get her back to a normal routine. But it's the little things that seem to be the biggest obstacles. Things like shirts fitting too snugly around the new button and PJ's covering up the button making it hard to connect to the pump at night.

Our fantastic Rett families have done a lot of searching and have found some great resources for you and your tube-fed Rett girl. I personally like the comfy pads that fit around the stoma at Making Lemonade. There are also cute, soft covers for buttons at Belly Buttons and Belts. And easy ways to adapt clothing and PJ's at Tummy Tunnels.

Check out all these great ideas and more at Rett Girl.

If you are a parent facing a decision to tube feed and wanting support from parents who have been there, contact us! We are always here to support you!

Sunday, February 12, 2012

Valentines Day!

Have you been on the Rett Girl Facebook page lately? If so then you'll remember that just a couple weeks ago we won a $500 donation from the Valentine Aardvark!

The story goes like this, the Valentine Aardvark is an Aardvark with special powers that visits children on Valentines Eve, bringing special gifts and treats to only those kids that have made special Valentines pouches for him to fill.

It is this special "pouch" idea that we revisit last years Valentines post about Say it with Symbols. Click on the link and then head to the Giving Greetings Site where you can click on Cards and then Valentine Symbols Note Cards.

Here you can find LOTS of great ideas for your Rett Girl. Order Special Valentines or if you already have Boardmaker then make some of your own. Use this site to order fantastic communication aids or to inspire you to create some of your own. Maybe have your Rett Girl put special valentines into the "pouches" of their family members or bring them to school for their classmates.

Have Fun and Happy Valentines Day!

Wednesday, February 1, 2012

Fighting a Rare Disease - A Little Help

We're coming up on Rare Disease Day - appropriately on February 29th! Fighting a disease is hard, but fighting a rare disease comes with it's very own set of hurdles. I'm sure we have all come across therapists, doctors, specialists and teachers who are well versed in special needs and childhood diseases, but have never heard of Rett Syndrome.

I imagine we have all gotten the "what? did you say Tourette Syndrome?" at least once or twice in our lives. These are definitely unique challenges that people with, say, Diabetes or any other well known disease don't have to deal with. We can explain our daughter's condition, and hand out a Purple Card, and feel a little better knowing we have at least spread awareness.

Unfortunately the hurdles don't end there. Many times rare disease have medications, testing and therapies that are difficult to fund but are desperately needed. We have to travel further --sometimes across the state-- for specialists and treatment. These costs add up quickly, too quickly, and can make even a financially strong family feel the pinch.

Thankfully there are organizations like the National Organization for Rare Diseases (NORD) that understand the financial strain of a rare disease and is working to help families get the care they deserve.

NORD lists several resources on their website, and has a Patient Assistance Program that can help pay for specific medications, testing, co-pays, insurance premiums, travel expenses and consultations with specialists that may not have otherwise been picked up by insurance. Of course you do have to qualify and then apply for assistance. Check out all the details on the NORD website here.

It can be very lonely, consuming and expensive to live with a rare disease, but it's so nice to know that organizations like this exist and are trying to make life just a little easier for us! Thank you NORD!

Bridget
RettGirl.org

Thursday, December 29, 2011

Rett Girl Store!

Do you know we have our very own store at RettGirl.org?

We have lots of amazing Rett parents, grandparents, and other Rett family members who sell great products that we would like to share with you!

Rachel Dalton – Homemade Bracelets (all proceeds support GP2C)

Aaron Bax - GP2C – Cure Rett Bracelets (all proceeds support GP2C)

Linda McInnis - Special Creations – weighted blankets and lap pads

Nicole Mast – Little M’s Accessories – hairbands, flower clips and hat for girls

Jan Erickson – Armbraces.com – arm braces and more!

Jeanna King – Popem.org – cake pops

Ronna Reid – Special Bows For Special Girls – hair clips

Kristin Hileman – Thirty One – amazing bags and other organizational items

Marla Black – “All About Angels” - pendant necklaces

We have a place to list Free Stuff or things you'd like to give away to the community.

We have a Needed section where you can list things you are looking for. We'd love this to become a place where we can trade with each other.

We have a link to the GP2C store where you can find all kinds of awareness goodies all while raising money for research.

Hope to see you there soon!

Happy Shopping!

Terri V~For RettGirl

Tuesday, December 20, 2011

iPad for Christmas!

We know many of you are considering or already have Apple's iPad under the tree for your RettGirl. We want you to know that we are here to help!

On our Homepage you can find a link directly to our iPad page. We are constantly adding new accessories and info on apps to help you along the way. And if you have something to share with us, please do!

We are hearing amazing things from parents about Apple’s iPad. For girls with retained hand function this can be used as an amazing tool for communicating, educating and entertaining.

It is an excellent tool to train and prepare girls for more sophisticated communication device via this easy, simple-to-use choice-making platform.

Parents of girls with little to no hand function still say the iPad and many of the apps provide endless entertainment for their girls. Definitely worth checking out or putting on that wish list we all have. The iPad and Apple have apps that play music, movies, read books and much more.

A few suggested iPad Apps for girls with Rett Syndrome (more listed on RettGirl.org!)

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Easy: Requiring just a touch anywhere on the screen to activate

Pocket Fish Pond – FREE
learn more
see it in action

Uncolor- $.99

The screen starts out black. When the screen is touched, that part of the screen begins to show the image underneath. The more she touches, the more of the image is uncolored.
learn more

Talking Tom – FREE with optional upgrade

Hilarious and perfect to interact with other children. Whatever you say into the mic, the cat repeats. You can tickle him and whack him and even knock him over. You can record all of the words actions to create mini movies. It is fun to have other kids speak messages into it for your daughter to hear.
learn more

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EDUCATIONAL:

ABA Receptive Identification – FFC Combined-$.99

- Clear, Colorful, Concrete Images
- Benefits to both Visual and Auditory Learners
- Classical Music with Visual Reinforcement
- Sound can be turned “on” or “off”
- Concisely Pronounced Audio

Check out all of kindergarten.com’s ABA apps for endless fun and learning

learn more

In My Dreams- $.99
Have fun with reading, matching, and sign language. “In My Dreams” uses animation and repetition to promote literacy. Each page has the same sentence structure and reinforces understanding of nouns, verbs and prepositions. “In My Dreams” is an instructional app designed with illustrations that provide language cues. Personalize the app for your child, student or client by adding their photo!
learn more

Choiceboard Maker-Creator-FREE

ChoiceBoard Maker is the perfect app for creating customizable choice boards for the unique needs of individuals with communication challenges. It reinforces correct choice by expanding the selected image as well as playing the customized auditory rewards.
It is an excellent tool to train and prepare users for more sophisticated communication device via this easy, simple-to-use choice-making platform. The possibilities are as much as your creativity can go.

Features include:

•Large buttons, and black/white contrast to facilitate visual attention
•Clean board design to minimize visual distraction
•Space between choice buttons to avoid inadvertent hits
•Customizable to 2,3,4 or 6 choices

learn more

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COMMUNICATION:

ANSWERS YES/NO HD – $3.99
Simple large YES and NO buttons for simple choice making. Answers: YesNo HD Features:

- Large buttons with ample selectable borders to assist with activation

- 5 Yes-No voices: man, woman, cartoon, boy, and girl

- Custom buttons with user defined color, text, audio, and pictures

- 5 lesson plans, each consisting of 6 pages of custom button pairs

- Enhanced navigation options

- Visual cue of selected buttons for the hearing impaired

- Multi-language support

learn more

SoundingBoard by AbleNet – $49.99

Communication Board program — comes with images or you can upload your own!
learn more

TapSpeak Sequence – $29.99
Acts like a step-switch sequencer/talker. With the added benefits of being able to access/create unlimited sequences that are saved, plus using any photo you want — OR connect it with a Boardmaker set of images.
learn more

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OTHER:

Picture Pusher- $.99
very simple, just pushing images into a “box”
learn more

Dr. Suess ABC – $3.99

A must have! Fun and easy. Page turn with a swipe of the hand. There are about 10 Dr. Suess books available. One Fish, Two Fish is good too! You can set it to read the book page by page with activation, or just to read through. When the child touches different images, the word for the image appears and speaks the word.
learn more

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BOOKS:

Mee Genius-A collection of free and purchasable books that highlight words as the story is read to your child. A favorite. Choose “read to me” and sit back and watch her follow the words.

learn more

Story Boy-Auto read books and fun apps for all girls. Pages change automatically or with a swipe. Prices vary and are affordable with many free.

learn more

Monday, December 12, 2011

Impossibly Easy Pumpkin Pie! Gluten Free

Happy Holiday's RettGirls!

This week I thought I would share my Impossibly Easy Pumpkin Pie recipe with you. Actually it was my Grandma's..or I thought it was. Turn's out it's from good ole Betty Crocker. Shhh. My family thinks it's mine.

You can find this recipe, among others, at RettGirl.org under Diet/Nutrition then click on Recipes then Gluten Free!

The best thing about this recipe is it is a no crust recipe. I always pick mine away anyway. You can make it the regular way or gluten free by changing up which type of Bisquick you use, either regular or gluten free. Both call for half a cup. I have never had a complaint, empty plate or a person who hasn't asked me for the recipe. We are on our 4Th pie since Thanksgiving here.

Enjoy!

Impossibly Easy Pumpkin Pie


1 cup canned pumpkin (not pumpkin pie mix) 1/2 cup Gluten Free Bisquick® mix 1/2 cup sugar 1 cup evaporated milk 1 tablespoon butter or margarine, softened 1 1/2 teaspoons pumpkin pie spice 1 teaspoon vanilla 2 eggs Whipped topping, if desired 1.Heat oven to 350ºF. Grease 9-inch pie plate. 2.Stir all ingredients except whipped topping until blended. Pour into pie plate. 3.Bake 45 to 55 minutes or until knife inserted in center comes out clean. Check first at 45. Cool 30 minutes. Refrigerate about 3 hours or until chilled. Serve with whipped topping. Store covered in refrigerator.

Dairy free substitutions:
each makes 1 cup
option 1:
3 cups vanilla rice milk
1/2 sugar
(simmer and reduce to 1 cup)

option 2:
3/4 cup silken tofu
1/4 cup honey
blend together in a blender

Terri V~For RettGirl

Monday, December 5, 2011

Shop GP2C!

Good Day RettGirls!

I know in this season of giving many of us are stuck on things to get our girls, their caregivers, siblings and more. We wanted to let those of you who were not aware know about our store at GirlPower2Cure.

How fantastic would it be to get that loved one something they would love, raise awareness and funds for Rett Syndrome all in one place?

Our parent site has it and we'd love you to go take a look!

Here you will find
t-shirt - $15