Gluten Free Goddess

Good Day RettGirls!

This week at RettGirl.org we are featuring this incredible blog called Gluten Free Goddess! We have this website listed under Gluten Free in our Diet/Nutrition Category!

Last year I struggled with including my daughter in our Thanksgiving Meal because we had just found out she was allergic to wheat. At the time I had no idea how to cook or bake without wheat/gluten. Especially for a meal like Thanksgiving Dinner. Rolls, Pie, Noodles. What about Abby? Would we just sit and eat in front of her?

Gluten Free Goddess is THE place to go for everything Gluten-Free. This week she is featuring Gluten- Free Thanksgiving Recipes and Tips. We aren't talking a pie and roll recipe either. She has absolutely everything.

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Tips from the Gluten-Free Goddess:

Key Tips for a Safe and Delicious
Gluten-Free Dairy-Free Holiday Season

If you're new to gluten-free living here's a Gluten-Free Diet Cheat Sheet to print out and keep handy. Because gluten is devious. Label reading is a must.

Marinades and soy sauce, broth and bouillon may use wheat or barley in flavors and seasonings. Although I urge you to check your turkey for gluten-free status, most I've seen are safe- if you avoid the seasoning or gravy packet.

Bottom line?

Know your bird. Know your source. And know your ingredients.

For thickening gravy, whisk in a tablespoon or two of sweet rice flour or an arrowroot starch slurry. Potato flour is another choice- but be careful you don't add too much and end up with gravy you have to slice and serve.

For a non-dairy sub in pumpkin, squash and sweet potato recipes try using coconut milk- it's creamy and delicious (full fat tastes best). If you can't do coconut milk, soy milk works beautifully. Or try one of the neutral tasting nut-based milks, or even hemp milk (though hemp milk is an acquired taste and may be too grassy for the uninitiated). Rice milk is generally too thin.

Another tasty non-dairy vegan choice is orange juice or apple cider. I cook carrots or cubes of winter squash with a splash of orange juice or apple cider for a lovely flavor boost. Then I drizzle a touch of pure maple syrup.

For creamy mashed potatoes that are dairy-free I use a light and fruity extra virgin olive oil instead of butter. I add a little of my favorite vegan butter spread for flavor (I'm using Earth Balance lately). If I want to add creaminess, I whip in some warm non-dairy milk- coconut, soy, and nut milks all work. A light gluten-free broth works, too.

Read more: http://glutenfreegoddess.blogspot.com/2008/11/thanksgiving-recipes-tips-for-gluten.html#ixzz1dmnYxW3G

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Wow, so many simple things you can do. Who would of thought? Incredible tips! Want more? How about some Thanksgiving recipes?

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Thanksgiving Sides

Acorn Squash with Attitude
(green chiles)
Calabasitas (zucchini, corn and onions with green chiles)
Cider Roasted Vegetables
Cinnamon Applesauce
Colesalw with Peanut Dressing
Cornbread Stuffing with Curried Apples and Cranberries
Crunchy Gluten-Free Bread Crumbs for Topping

Dijon Roasted Vegetables
Karina's Kicked Up Colcannon
Maple Roasted Acorn Squash
Pinon Rice Bake with Artichokes, Corn and Goat Cheese
Pomegranate Glazed Green Beans and Portobellos

Quinoa Mushroom Pilaf
Quinoa Salad with Baby Spinach, Apples or Pears in Maple Vinaigrette
Quinoa with Butternut Squash + Cranberries
Roasted Winter Vegetable Ragout with Shaved Parmesan
Ruby Applesauce with Cranberries

Santa Fe Brown Rice Bake
Two Potato Salad with Sweet Potatoes
Zucchini Gratin

How about a few desserts?

Sweets

Apple Crisp- new
Apple + Pear Crisp
Apple Cake with Cranberries
Coconut Flour Apple Cake
Cranberry Peach Crumble
Maple Frosted Pumpkin Cake

Pie Crust Recipes
Pumpkin Bars
Pumpkin Bundt Cake
Pumpkin Chocolate Chip Cookies

Pumpkin Cupcakes with Maple Cream Icing
Pumpkin Pie- easy
Pumpkin Praline Pie with Coconut-Pecan Crust
Sweet Potato Pie

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What we have listed here doesn't even touch on the resources, tips, recipes you can find at Gluten-Free Goddess. Many Many Dairy-Free Recipes too!

We hope you enjoy! Have a Healthy and Happy Thanksgiving!

http://rettgirl.org/2011/11/gluten-free-goddess/

Terri V~For RettGirl

2011 Holiday Gift Ideas!

Good Day RettGirls!

It's here. What you all have been waiting for. RettGirl.org's 2011 Holiday Gift Ideas!

We have had many of you ask us about this year's list, and we are so excited about many things. I, myself, am having to hold myself back from purchasing most everything on the list. It really brings out the little girl in me just thinking about playing or using most of these ideas.

For example:

Barbie and Me Hair Extensions- Your daughter and her siblings and friends can have a great time mixing and matching hair extensions you make on your own printer at home!

Disney Princess Magic Learning Wand- Something pretty and fun for you daughter that can be integrated into OT therapy for hand use. Remember those neurons that fire together, wire together!

Light Therapy Full Spectrum Light- Beat the winter blues with proven light therapy at home.

Glow in The Dark Bubbles- Need I say more?

A ton of fun and useful things this year. We all had some favorites from years past so we linked our previous lists to this year's for triple the ideas for your Holiday shopping!

Have a great season everyone! Click on the links below to get started!

Air Chair
Barbie and Me Make-Your-Own Hair Extensions
Chantilly Lane Scrubs Bear
Color Changing LED lights
Disney Princess Magic Learning Wand

FIJIT Friend - Willa
Fleece boots
Flower Safety Glow Stickers
Free App - Scotty and Lulu Music and Games
Glow-in-the-dark Bubbles!

Laugh and Learn, Dance and Play Puppy
Leg Warmers by Baby Legs
Light Therapy Full-Spectrum Light
Littlest Pet Shop Dancing Dog
Massage / heated Cushion

My Keepon Dancing Robot
Polartec Winter Cape
Sesame Street Let's Rock Elmo
Shrinkins Wheelchair Decorations
Silly Bowling

Twilight Ladybug
Zoe's Dance Moves DVD

* And be sure to visit the GP2C Shop to get T-shirts, car decals, cinch sacs, music and cell phone skins!

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Holiday Gift Ideas - 2010

Holiday Gift Ideas - 2009

The entire list can be found on our Home page and at Holiday Gift List 2011 where we also list HOLIDAY TIPS for a less stresful season.

Have a great week everyone!

Happy Shopping!

Terri V~ For RettGirl

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