Friday, November 20, 2015

7th Annual Rett Girl Holiday Gift Guide

We have so many exciting gift ideas for your special Rett Girl! In this year's Holiday Gift Guide we have tried to cover every age and ability level as well as every budget! 



Bluebee Pals: 
What a cool toy!  Bluebee Pals are plush animals that connect to apps when paired with bluetooth and create interactive toys that "talk!"  They can sing songs, read storybooks and can even be used as a wireless speaker phone!  





Wrapeaze:  
Imagine a super cozy fleece wrap that is secured with just a simple velcro closure at the neckline.  The Wrapeaze provides comfort, warmth and style for your Rett Girl without the bulk or hassle of a jacket!  Lots of colors and patterns to choose from.  

An evolutionary tripod for smartphones and tablets that resembles the human body with an unlimited number of positions and holding options.  This tablet holder will go everywhere your Rett Girl goes and will hold at any position she needs!







Flatbox:  
The FlatBox is a lunchbox that unzips to become the placemat for your lunch!  Protects your Rett Girl from one of the germiest places in school - the cafeteria table AND it’s machine washable! 


Playing with baby dolls with limited hand use is tough! With this baby doll carrier your Rett Girl can carry her baby hands free!









Spongelle
Fun new beauty sponge combining exquisite fragrances with time-release lather, olive oil and botanical extracts to make your Rett Girl's skin glow and her face smile!  It’s the Ultimate spa-at-home experience.







Speaker Creatures:  
These water - resistant, adorable Bluetooth Speakers pair with your Rett Girl's music device and easily suction to the shower wall.  So she can jam even when she's in the bath!  



Makey Makey:
Check out the Makey Makey!!  An invention kit that allows you to turn everyday objects into touchpads and combine them with the Internet!  Just think, you can make a “custom” switch for your Rett Girl using play-doh, or even use bananas to create piano keys! What?! This is so cool! So many different options and there’s also a special needs forum where you can share your ideas or get inspired by others! 


Amazon Smile!
Designate Girl Power 2 Cure as your charity when you purchase through AmazonSmile.com and Girl Power 2 Cure will receive .05% of the proceeds.









Zubits:    
Zubits magnetic shoe closures are quite simply the fastest and easiest way to get in and out of your shoes! When the Zubits magnets are separated it's as if you have no shoelaces at all, so you can easily slide into a wide open shoe. Then, just click the magnets together and that's it!  



My Friend Teddy:  
You can bring this adorable stuffed bear to life by downloading the free app and customizing your Rett Girl's specific information, such as favorite characters, food, toys, family name and birthday!  Teddy will incorporate these into his engaging and interactive storytelling.  



Rainbow DazzleMinnie Mouse:  
Magical fashion is at the tip of your Rett Girl's finger with Rainbow Dazzle Minnie! Press the heart on Minnie's hand to activate the magical light-up feature and design Minnie's outfit with the colors of the rainbow. Simply touch Minnie's bow, skirt or blouse to make them magically change color. 






Slipper boot:   
Nothing beats a great pair of slippers! These have a hard sole so their perfect for walking around the house or a quick trip in and out of the car.  Buy a size or two bigger to accommodate AFO’s! 








Bright Beats Playspace: 
This interactive, touch-sensitive light bar features innovative Smart Touch Technology that responds to touch with music, lights, colors, sung songs & much more! 3 ways to play: Piano Play, Dance Party and Learning & Games. It's the ultimate toy for introducing your Rett Girl to colors, numbers, ABCs, music, cause & effect and much more!





Moff Band:  
This comfortable, slap on bracelet is easy to wear and encourages kids to move around with realistic sounds that follow each action. Think about how fun and motivating this could be for your Rett Girl at physical therapy!   









Hooty:  
Adorable and fully microwavable!  These soft and furry nocturnal Hootys make the perfect bedtime companion and are the ultimate in functional room decor. They are gently scented with lavender for a perfect night’s sleep. 









Packing Pup:  
The PackingPup is the Ultimate Travel Companion. He is soft and plush, gentle and affectionate and has your Rett Girl's comfort needs in mind. Simply transform the puppy into his u-shape form and voila! Comfort at your beckoning call.Perfect for holiday trips. 






The Rocking Hammock:  
There's nothing quite like kicking back in a hammock, and now your Rett Girl can delight in that comfort in any space! This incredible rocking hammock is compact and lightweight enough to easily fit and move indoors or out. Holds up to 95 pounds!



Aquarium Lamp with Fish: 
Your Rett Girl will be mesmerized by these fish that "swim" in a colorful, lighted seabed.  A moving picture creates the illusion that the water and fish are in motion.   








Pulleez: 
Ponytail holders with a dangling metal charm secure hair all day without leaving a crease.
Super easy to slip on and off!    









Switch Adapted Spin Art: 
This battery-operated switch-adapted Spin Art set lets your Rett Girl easily create great art using her switch! Includes cool Neon Color Paints and Paper.  

Your Rett Girl will feel tranquil and relaxed, with a new waterfall foot bath! The full bubble action will sooth her soles, while the innovative waterfall will massage the top of her feet and pamper her toes.
Does your Rett Girl love watching movies?  This pocket projector connects via HDMI cable to most smartphones, tablets, computers, video game players, media streaming devices, cameras and more!  It projects images up to 50" diagonal on just about any flat surface.  It even has built in speakers!  


Past Holiday Guides!  
Check out our past Holiday Gift Guides for even more ideas!


Your Rett Girl will never forget the experience of witnessing the metamorphosis of ten caterpillars into beautiful Painted Lady Butterflies. This Giant-Sized Butterfly Habitat has super-see-through mesh perfect for butterfly viewing.








Liberty’s Kids: 
Give your Rett Girl the gift to travel back in time and witness history in the making with Benjamin Franklin’s teenage reporters as they confront the real and physical dangers of the American Revolution. She’ll discover the high points of the American Revolution through this fun and animated educational adventure! 








Orbeez Spa Chair:   
Your Rett Girl can relax by immersing her body in the soothing softness of Orbeez. That’s right she can literally sit in an inflatable lounge chair filled with Orbeez. The Body Spa features soothing vibration and hand pouches to enhance her relaxation.







Zoomer Interactive Puppy: 
Zoomer is back! He's twice as smart, twice as funny and will steal your Rett Girl's heart twice as fast! With voice activation, she can teach him everything a puppy needs to know. Have her use her communication device to call his name and help him learn tricks!







Mechanical Globe: 
The Night'n Day Real Solar Time Rotating Globe is a globe, clock and calendar in one. It shows the time of day and date for any location on earth and lights up to show how day turns to night. Both beautiful and functional!




Mozart Magic Cube: This is a great toy for our Rett Girls!  Wonderful, classical music and with just a touch of a (big) button she can add or subtract different instruments!   




Rett Girl Holiday Guide
Check out lots of fun activities, recipes and tips for surviving the holidays in our latest Rett Girl guide!


GP2C Shop
Add some flower power to your gift selection this year! We've got shirts, hats, blankets, water bottles, and so much more including our annual holiday ornament!








Leave us a comment with your feedback and recommendations! 

From everyone here at Rett Girl and Girl Power 2 Cure we wish you the very Happiest and Healthiest Holiday Season!  






Saturday, June 20, 2015

Looking Forward with Hope





Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

by AJ Tesler

I remember the day my daughter got diagnosed with Rett Syndrome.  I remember sitting in the doctor's office and listening to her tell me about Rett Syndrome.  My mind was awash with questions - questions the doctor didn't have answers to.  I remember the feeling of helplessness and despair for what would happen to my daughter.  I remember the grieving period, the feeling that we had lost everything.  Thinking back on that period still hurts.  Looking back, I find, usually does.  But in that time, looking forward hurt more.  Not any longer.

I remember when it all changed.  When instead of being sad for myself or my daughter I decided to take action.  I called everyone I could get a hold of.  I asked questions.  I started volunteering for Rett Syndrome events.  I make videos for a living, so I started making videos to share with the world.   For me, and I imagine for most people, the faster I can help find a cure, the faster my daughter can overcome Rett Syndrome, and that gives me great purpose.  Being her voice has been the greatest pleasure of my life, and has given me purpose unlike anything I've felt compelled to do previously.   And that allows me to look forward with hope and optimism.  Being proactive for Maggie and for Rett Syndrome research, has allowed me the chance to dream and believe and as a result, those dreams have turned into certainty and at this point, I'm 100% positive that we will cure Rett Syndrome in her lifetime.

My wife and I, in periods of Rett difficulty, will remind each other that "we will win this."  I look forward to the time when I can correct that mantra.  Someday, it'll be nice to say  "we won."

Gus' Gift


Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.




by Gus Rodriquez

I have three inspirational characters: Nick, Vivian, and Bea. Each one has different strengths and weaknesses, yet it’s been my experiences parenting Bea that have made me a better father to her siblings. To say she inspires falls way short of the plate.

She is truly beautiful, and I could stare at her for hours. Her eyes- beautiful as a clear blue sky, have a way of melting my stress and fears away as she reminds me to see the true treasure of life: family. Watching her fight Rett syndrome is not easy, but much easier than living with Rett Syndrome is for her. I look at Bea and see how strong she really is with every day that passes. The small things we take for granted everyday really make you think twice about complaining. Things like “my leg hurts; I have a pain in my back; I have a headache,” things like this I suppress and keep to myself because I watch my little Gwaggles (that’s her nickname) go through much more pain than any of us can imagine.

Because I see how tough my 4 year old is, I tell myself, “MAN UP!” This is what comes to mind when she gives me that stare, KNOWING that I am on my last bit of energy. Beatriz is my strength and courage. The joy she puts in my heart melts all discouragement away, and always gives me the jolt I need to accomplish any task thrown my way. I tip my hat to her for the simplest things in life: love and happiness. She truly is a gift!

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While Gus sees his daughter as a gift, he himself is a gift to his entire family. His wife, Suzanne, shares their story together, one that exemplifies the word "Dad."

There’s no doubt that the bright-and-center star of our family is Bea, but it’s my husband Gus who’s the unsung hero of our Rett story. He proved he’d make an AMAZING father the first night I met him. I just didn’t know it because we didn’t share more than 5 words. Gus and I met on a kickball field. He was the captain of a team that I joined simply because I liked the charity they played for. Although our only interaction that night was exchanging names, he did, however, spend the bulk of that first night chatting up a storm with my then 4 year old son, and we have a photo to prove it. As the season progressed, we got to know each other and eventually became a couple.

He’s from a large, blended family, which is probably why he took to his fatherly role with Nick easily. There was no stopping these two and I admit to being jealous early on. Nick was “mine,” not Gus’, but I couldn’t deny that Nick was thriving from the interaction with Gus, or that it made me VERY happy. Then came the ring. Then came a lost pregnancy.

People often think that a mother’s love is stronger than a father’s love because mothers carry the children, but I watched this man grieve in a way I had never seen anyone grieve before. He was a father mourning the loss of a child, and it was then that I began to see how strong Gus is. Where I was a near-lifeless mound of sorrow and crumpled-up tissues wherever I went, he was stoic, steadfast, and cheerful when faced with Nick’s difficult questions. He held down the fort and every semblance of normalcy that mommy couldn’t for Nick. Just short of a year into this parent role and he was already a better father than most. When our first daughter, Vivian, was born the following year, it was as if his heart exploded with love.

Vivian came early, weighing just 5lbs. She was in two different NICUs for 11 days. And once again I was witness to his strength. For 11 days, Gus commuted an hour each way, worked his 8 hour job, and visited the NICU every three hours from 10 pm to 6am so I could get my rest at home and be with Nick. When she finally came home, he was in heaven with his little family and shared that joy with everyone within earshot. You could literally feel love and happiness when within 6 ft of him. So much love that 6 months later, we were pregnant again! He was dead-set on us raising our children versus daycares or nannies so he took on extra jobs to account for my lost salary. When Beatriz was born, he was once again father of the year as an eager volunteer in all things baby. Who wants to change diapers? This guy. Who wants to burp the baby and get puked on? This guy. He is as hands-on as it gets, and I often heard (still do) from friends/relatives/other moms that I was “so lucky” because their husbands didn’t share in baby duties. Despite the busy schedule he kept so he could provide for our family of 5, he was never too tired for cuddles, a book, dress-up, baseball, or bear hugs.

When Beatriz turned one and her “quirks” turned to health concerns, Gus’ strength stole the spotlight again. We were slapped with our daughter’s mortality and told that while there were no guarantees about when she would die, they were sure she wouldn’t “live.” Rett was like being trapped in a body that didn’t work. It would have been completely understandable for him to walk around like a zombie, I was after all, but Gus went on to work and went about his day, because that’s what his family needed.

It’s often said that we are tested not to expose our weaknesses, but to discover our strengths. Gus has hit a home run with every curve-ball thrown at him. He even helped one of my best friends escape an abusive relationship by opening our home to her and her two children, and was happy he could help them. He makes everyone feel like family. These days he still works multiple jobs to provide, and while he can’t be at every doctor’s appointment or therapy visit, he’s texting me like a crazy person until I update him. He comes home and is hands-on with dinner, baths, homework, and housework (including laundry mountains). He’ll then head to his “office” and spend hours scouring the internet for treatments or activities, or videos on how to adapt toys for Beatriz. “Selfless” falls short when it comes to describing Gus. He is the glue that holds me together. He sets the example of what a man/father should be for Nick, and the type of man we hope Vivian and Beatriz bring home one day. What more could I have asked for in a husband?

Monday, February 2, 2015

How I Saved Over $27,000 Last Year

Special Guest Blogger: Syndi Knowlton, Rett mom and couponing expert

Being a special needs parent comes with a hefty price tag.  Co-payments for appointments, dozens of medications, home modifications…. And trying to maintain gainful employment to afford it all is more stress than we need.  Take all of that stress and times it by 3 and you have my little family.  All of my children have major medical issues.  We were faced with two options:  work an insane number of hours to cover the monthly bills or live intentionally below the poverty line.  I knew I was capable of working.  I also knew I could be craftier about the way I spent money.  That’s when I turned to couponing.  In the beginning, it was slow going, but as I learned the tips and tricks, I have cut it down to less than 2 hours per week (including the trip to the store). I was asked to share some of what I have learned.  If you have questions along this path, feel free to email me at Syndi@Utahkidsfoundation.com

Point #1

There is predictability in most things you purchase for your home.  I am attaching a list here to see a more complete list.  A lot of it is common sense.  Think of January.  We all make New Year’s Resolutions.  Many of them include losing weight and getting healthier.  This is a great time to purchase your exercise equipment and stock up on vitamins.  You are also half way through the winter.  Many stores will offer great deals on winter clothing.  Try to plan purchases you might make each year around when the sales are to save a lot of money.

Point #2

You can order just the Sunday newspaper in many cities.  Most newspapers have a couponers special and you can get a steal on up to 4 papers delivered for a low cost.  The rule of thumb is you want one paper for each person in your home.  I am allowed to purchase 4 and I pay just $20 a year for delivery each Sunday.  You can coupon without getting any deliveries. 

Point #3

You can even coupon some without having a printer!  Many stores have their own online coupons.  Kroger chains have a Fresh Value Card.  Log in to your account and add coupons to your card before you head to the store.  There are smart phone apps that also do couponing, but it saves up your savings and you can cash them out for cash or gift cards.  Some examples of the apps to coupon in a rebate format are:

Checkout 51 –  go to http://www.checkout51.com Scan your items and receipts and you earn money without using coupons.  This can be redeemed for Paypal funds when you reach $20.  New items added on Thursday.
Receipt Hog – go to http://app.receipthog.com/install/bv5d5cqw Scan your receipt, save for Paypal funds.  You can redeem at $5.  You now can scan all stores, not just grocery stores.
iBotta –  go to http://ibotta.com/r/ipsbBw  Scan your receipt and items to gain Paypal funds or a few gift cards.  Also certain restaurants and movie theaters etc have money back in this app.
JingIt – go to https://www.jingit.com/?ref_id=103311&s=e  They offer small rebates on your every day staples: Milk, bread, eggs, etc
Snap – go to https://snap.groupon.com/app?ref=9dcb83b076d8f78d  This is an app from Groupon that also redeems rebates.

If you share these links with your friends, you build a larger money saving team and in some applications, work towards big bonuses.

Point #4

You can print a lot of the same coupons that would come in the Sunday paper.  Here are a few of my favorite sites:

www.commonkindness.com – this has more obscure coupons on this site and you can donate a portion of the coupons you use to a charity
www.smithsfoodanddrug.com – digital coupons to use with your card.  Every Friday they have a free coupon.
http://www.retailmenot.com/:  This gives you coupons for almost every store (not groceries) to instant savings and online coupons listed.  Deals both online and in stores

Also, register with your favorite brands.  They often have coupons for their products on their own websites.


Point #5

Now you know where to get the coupons, and rebates.  The next step is to coordinate the sales with your coupons to get more bang for your buck.  My go-to site for what sales are at most stores and what coupons to match with the sales can be found at http://www.grocerysmarts.com/national/lists/indexnatbdv.php

Select your state and the store you want to shop at.  It will show you everything on sale that day.  If you notice the far left column, it reads Stock Up scale.  This is a classic rating system to help you know if this is the bargain of the week or if it’s just "ok."  Even the money you save on a basic coupon is still savings.  If you are wanting to only get the great deals, on the upper right side of your screen you will see a button that says Shrink.  This cuts out the fluff.

There are oodles of websites for price matching.  Certain stores (including WalMart) will price match but only within a limited area.  For example, I live in Utah.  I know that most produce is grown in California and shipped here.  I can’t find an amazing price in California and have them give me the same deal.  Ask your friends what price matching sites they use locally to ensure you are getting the correct data.

I want to stay on WalMart for just a moment as it is mostly universal for our families.  Walmart is one of a few stores that will actually give you cash back.  For example, Ladies Speed Stick, the smaller stick, is $.89 at my local WalMart.  If I had a coupon worth $1, Walmart would actually give me the $.11 back.  They apply it towards the rest of the purchase but if that were the only thing you were purchasing, they will hand you $.11 minus the tax for the item.  Other stores typically zero out anything you would receive back if the coupon is worth more than the item.

I am sure many of you are aware of WalMart’s Savings Catcher program.  At the bottom of all receipts at Walmart, there is a code you can enter either on their website or your smart phone app.  This will then go search all local stores and if a lower price is found, you will be offered a gift card to use for future purchases.  They have a promotion going on right now.  If you go to the kiosks where they have gift cards for sale, grab an American Express BlueBird card.  This is a card you can preload money on to.  Now until the end of February, the usual $4.95 fee for the card is waived.  Also, if you run the Savings Catcher program, you can have the difference of the lower price added to this card and they will DOUBLE the money back.  The refund from Walmart that goes on this card can only be used at Walmart.

Point #6

Buy smaller quantities / volume!  Stores like BJs, Costco and Sam’s Club are great for buying in bulk.  On average, you are saving 15% off retail for the same quantity at your local store.  I no longer shop at these stores because I do much better with coupons.  Let me give you an example:

I have a coupon for $.50 off French’s Mustard.  If I buy the largest bottle, I am spending $1.83.  After the coupon, I am spending $1.33.  If I use the same coupon and apply it to the smallest bottle, the bottle is priced at $.99.  After the coupon, it’s just $.49.  If you take the ounces in the large bottle and divide it by the price, and do the same with the smaller bottle, you are getting your quantity cheaper.  This is where multiple coupons are great to have.

Point #7

Watch the information on your coupons and your stores coupon policy.  I always print and take a copy of the store’s policy with me before I go.  They can be found on most stores’ websites.  If I am not sure about the policy, stop and ask at customer service before you shop.  Some stores limit the number of identical coupons that may be used at one time.  Many coupons also limit similar transactions to 4 in one day. 

Point #8

A quick shout out for Kroger brand stores.  If you are a Kroger’s shopper, you know that there are points for every sale that can be used towards money off the cost of gas up to $1 off per gallon of gas.  I fill all of my prescriptions here as well to boost points for cheaper gas. 

They have a lesser known program that can save your family a lot of money.  I have a son, 15, with Autism.  He has a terrible habit of losing and/or destroying small electronic devices.  He is higher functioning though and wants to be like his friends.  I also like being able to know where he is.  Kroger owns a cell phone line called iwireless.  You can get non smart phones from as little as $4.99.  The same points you accrue to get cheaper gas, you can also use to pay for your cell phone bill!  It is not a one or the other!  My son never uses his phone.  I have just a 100 minute or text plan that is $10 a month.  When his bill is due, I log in to iwireless and use my points to prepay for the next month of service!  I haven’t paid for his cell phone usage in 2 years and if he destroys a phone, it’s maybe $10 for a new one.  Pretty slick deal!  They do also have smart phone unlimited plans as well and their service runs on the Sprint network.



Last little nugget

Some of you reading have Food Assistance Programs.  If you use coupons, you do have to pay for the tax on the coupons.  However, it is usually far less than the money you would save by using the coupon.  If the tax was $.06 and you are saving $1, it’s still saving you $.94.  It can help you build up a food storage quickly!

Some stores offer double coupon days.  This adds another level to your savings.  Many stores also have store coupons.  You can stack a store coupon on top of a manufacturer’s coupon for extra savings.  All of the apps I mentioned in Point #3 can be added on top of these. 





Written by: Syndi Knowlton, Rett mom - Thank you Syndi for all of your, help, advice and expertise!