Holiday Gift Ideas 2013!

It's here!!! RettGirl.org's 2013 Holiday Gift Ideas!

We have had so many of you ask us about this year's list, and we are so excited about the great things that have been put together here.  There's really something for everyone regardless of your Rett Girl's abilities or age I think you'll find something great here that she will just LOVE! 

This year we have adopted the gift giving philosophy of  "Something to wear, something to read, something you want and something you need."  Plus, we have ideas of how to incorporate fun outings as gifts that can come from mom and dad, aunts and uncles, Grandmas and Grandpas or anyone!  And we didn't forget the stocking stuffers!!!  

Many of the products can be found in Amazon Smile's new charitable site! We have linked them there to make it easy for you! If you designate Girl Power 2 Cure as your charity when you purchase through Amazon Smile, Girl Power 2 Cure will receive .05% of the proceeds.

Something to Wear:  

Adorable Apron:  For ages 4 and up, this is a great way to get your Rett Girl in on some of the Holiday baking!

Herbal Warming Scarf:  This all natural herbal scarf can be warmed in the microwave before heading out to the bus for school! 

Hat with Built in Speakers:  Keep your Rett Girl warm and looking cute with this great hat with built in speakers, just hook up her mp3 player and she's can listen to her music or audio books while out and about this winter! 

Knit Leg Warmers for Girls:  These are soft, adorable and are one size fits all for girls size 4-16.  

Headphone Earmuffs:  Super soft earmuffs with earphones hidden inside.  

Something to Read:  

The I Like Book: Make a new tradition to snuggle up with your Rett Girl and share something you love about her by jotting it down in her book.  A keepsake to cherish forever!

Read With Me Violet:  This cute puppy pal makes reading fun with five interactive, read-aloud books narrated by Violet. Violet responds to every pet, pat, hug and kiss—press a button on Violet’s collar to start reading and pat his head to turn the page.  Violet sings, cuddles and plays lullabyes too!

Turtle Books: TURTLE BOOKS fill the missing gap in children’s literature. Now you have easy-to-read books that honestly talk about what it’s like to be a child with a disability. Warm, colorful illustrations and simple, beautiful stories offer insights in dealing with children who have physical and mental disabilities.

Audible: This company is run by amazon so it's nice and secure.  There are lots of audio book apps these days but this one offers a HUGE library of books from children's to teens to adults and you can customize your membership.  Listen anywhere with android, iPad or iPhone.

Something you Want:  

Touch Magic By LeapFrog:  There are a few versions of this Touch Magic Board from Leap Frog. Takes no effort to make these boards come to life. The surface is completely smooth, no matter where it’s touched it will make sound or music. 

Butterfly Lights:  These lights are perfect for dressing up your Rett Girl's room or hanging in a special spot!
  
Wheelchair Accessory for Dolls:  Your Rett Girl's favorite doll can be just like her with this doll wheelchair.  

Giant Step-On Keyboard:  Great sensory input for our Rett Girls who are able to walk or crawl or who are still learning!  

Just Me Music:  Personalized CD's or DVD's that sing or say your Rett Girl's name!  

Giant Butterfly:  Beautiful hanging butterfly perfect for your Rett Girl's room.  

The Talk Back Mimicking Doggie:  Reward every sound your Rett Girl makes, this cute dog repeats everything in a cartoonish voice.

Butterfly Wind Spinner:  This is a beautiful wind spinner that works with the wind alone outside or enjoy it during the colder months by bringing it inside, Hang it indoors with this battery and watch it spin for hours.

Touch Magic Guitar:  The slightest touch will get this guitar rocking!  

Glow Worm:  This classic glow worm provides comfort at night.  Or check out this adorable Jumbo Glow Seal!

PicWits! Card Game:

Time to get social! Funny photos and caption game! Perfect for eye gaze and switch communication.

Big Hugs Elmo: This amazing hugging Elmo also sings, sleeps gives imagination activities and more!

Something you Need:  

Himalayan Salt Lamp:  To naturally purify the air in your Rett Girl's bedroom or favorite room of the house.  

Fun Bed Sheets:  Everyone needs new sheets, but these are perfect for a princess!!  

Towel Warmer:  Imagine getting your Rett Girl out of the tub and wrapping her in a heated towel.  

Big Mouth Bib:  This is a great, fun bib that catches EVERYTHING!  

Stocking Stuffers:  

Light Up Shoelaces

Personalized Spinbrush

Bow Holder

Purple String Lights

Knot Genie Brush
 
Girl Power Flower Zipper Pulls

Friends and Family Get Creative

Instead of the typical gifts this year how about giving the gift of your time and friendship:

• Give your special Rett Girl a gift certificate for two movie tickets and let her pick a date for both of you to go.
• Make a home made card with a "coupon" for her to use to go to her favorite restaurant with you.
• Build a movie night basket with her favorite snacks, a blanket and a DVD, then set a date to come over and watch it with her.
• Give her a gift card to your special Rett Girl's favorite store then take her shopping so she can pick out exactly what she wants.
• Create a coupon book for your special Rett Girl filled with things she likes to do, such as: going to the zoo, sleepover, baking, etc. and allow her to "cash" in on them all year long. Whenever she cashes in on a coupon you come over and spend time doing the activity she chose.  

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Visit the GP2C Shop to get T-shirts, decals, fleece, tumblers, buttons and more!

Check out our HOLIDAY TIPS for a less stressful season

Visit our Holiday Gift Ideas from previous years:

Holiday Gift Ideas - 2012

Holiday Gift Ideas - 2011

Holiday Gift Ideas - 2010

Holiday Gift Ideas - 2009

Can Salt Be Healthy?

What is Crystal Himalayan Salt?  

Crystal Himalayan Salt is a type of salt mined from salt mines in and around Pakistan.  This crystallized salt, because it's mined deep in the earth, has not been exposed to environmental toxins that are usually found in Sea Salt.

What's Wrong with Table Salt?  

Typical table salt goes through a chemical process to "clean" it. The problem is that this process also strips the salt of all of its minerals, and the final result is simply sodium and chloride which causes all sorts of issues in our body.  When we ingest table salt from either processed foods or from the salt shaker our bodies recognize it as foreign and tries to eliminate as soon as possible.  In order to do this our body goes through a natural process of trying to neutralize the sodium and chloride by pulling water from our cells, these cells can actually dehydrate and then die.  Over time the salt can cause all sorts of health issues such as hypertension, gout, arthritis, and kidney and gall bladder stones.

What Makes Himalayan Salt Different?

Once the Crystal Himalayan Salt is mined it is cleaned and minimally processed so the natural elements and trace minerals are preserved.  The result is a natural, pink colored crystal that contains 84 essential elements. These elements are naturally found in your body so when you ingest it your body recognizes it as nutrition and breaks it down much easier, without the use of excessive water from cells, and distributes the nutrients throughout your body rather than trying to eliminate it from your body.  

What are the Health Benefits of Himalayan Salt?

Because of all the essential elements and minerals that it contains, Himalayan Salt can have many health benefits such as:

• Improving circulation
• Strengthens bone structure
• improves sinus and congestion
• helps to balance blood sugar levels 
• hydrates and promotes a healthy pH balance in your cells
• Improves blood pressure
• Helps maintain muscle tone and strength while eliminating muscle cramps

How do I use Himalayan Salt?  

There are many uses of Himalayan salt and you can get it in many different forms.  

-Larger crystals are usually used in salt baths sometimes called "brine baths".  These brine baths use about a pound or more of salt mixed with very hot water.  The result is a very strong detox that can be beneficially in removing impurities and improving vascular  health but can also be dangerous to those who have high blood pressure or more delicate systems like our Rett Girls.  Instead, try adding just a small amount of salts (a few teaspoons) to her bath, making sure they are completely dissolved and keeping the temperature at a comfortable level for her.  Our skin is the largest organ in our body, sitting in this bath for 20 -30 minutes will give her body enough time to absorb some of the essential minerals. 

- Himalayan Salt can also be used to make "sole."  Sole is essentially salt mixed with water until it is saturated and no more salt can be dissolved in the water.  The sole is then used to make sole solutions which are different concentrations of the sole that can be used for various different things such as a sinus cleanse, mouth wash or even a drink to replenish your electrolytes.  You can find out more about Sole Solutions here:  

- The easiest way to benefit from Himalayan Salt is to just use it in place of your cooking or table salt.  You will be eliminating the harmful salt AND gaining the health benefits of Himalayan salt without changing much at all. Please remember that Himalayan Salt still contains sodium so while it's healthy in moderation you don't want to overuse it.  The USDA recommends no more than 2500 mg. of sodium per day.  

Himalayan Salt can also be turned into a salt lamp.  These lamps are thought to purify the air by neutralizing positive ions.  They have also been studied to help alleviate the symptoms of asthma and allergies.  You can find out more about Himalayan Salt Lamps here.

Will Our Rett Girls Benefit From Himalayan Salt?

Many of our Rett Girls have digestion issues which can cause malabsorption of many minerals.  Without absorbing essential minerals our girls are at a much higher risk to experience health issues (see the health benefits list above).  Adding Himalayan Salt to their diet can supply our girls with the trace minerals that their bodies may be lacking and in turn may help to ease some of their symptoms.

PLEASE NOTE: Although this is a very safe and natural product it is always best to check with your Rett Girl's doctor before trying anything new.  

Team Spirit!

Feeling disconnected with the people working with your daughter? Want them to feel more comfortable around you? Need something besides cookies to bring to an IEP meeting to get things off to a good start? Looking for something to give out for Rett Syndrome Awareness Month this October?

BUTTONS!

Yes. Buttons. We've see it work first-hand. We've got them in our store and will customize them for you!

Give a team button to everyone who attends your daughter's IEP meeting - and then give out more. The therapists, the special ed teacher, the aides, the school nurse, the bus driver, the principal, the school guidance counselor.

Bringing on that team spirit will give you a better chance at team work. The buttons will remind them they are all part of a team that should be looking for wins, looking to grow, looking to be strong, and looking to have good sportsmanship.

It takes just one to pin the button to their purse, lanyard or bulletin board - then you have the beginnings of pride and a sense of belonging.

Try it and let us know what you find out. Give us your ideas. We are rooting for YOUR TEAM!!!

CLICK HERE TO ORDER. Then send your custom text request to kelly@gp2c.org.

Intro to Blended Food for Rett Girls

Are you relying on formula to feed your daughter through her G-Tube? Have you heard about a healthy alternative called a "blended" or "blenderized" diet? Here's the scoop:

A blended diet is simply taking everyday foods and blending them so they can be given through a feeding tube.  A blended diet can be very intimidating at first (it's much easier to open a can and have peace of mind that "everything is in there") but don't over think this one.  Think about how you eat, how your other children eat and how your Rett Girl ate before getting a g-tube.  A blended diet is as easy as preparing a meal - then blending it into a soup-like texture! (note: you will need a blender with a soup setting to get it to the best consistency - see below for recommendations).

We're here to give you a starting point and the resources you need to make an informed decision about blending.

The Benefits:

A blended diet is perfect for those who have food allergies or intolerances and those who are looking to add more fat, calories or proteins.  Your Rett Girl will essentially be able to eat the same nutritious foods you serve your whole family.

Bonus: Since you are in control of the ingredients you will be able to stay gluten-free, dairy-free, soy-free, etc.  You can add more fats if your Rett Girl needs to increase her weight, you can blend raw foods or cooked foods.  You will also have control over whether the ingredients are organic, the proteins are free-range, the dairy's are grass fed and the grains are GMO free. 

Many families have switched from formula to blended foods and have experienced wonderful health benefits. It's hard to say exactly if or how exactly your Rett Girl might benefit from a blended diet since each child is different and each family will blend different food and in a different way.  But what is clear is that fresh, whole foods are always everyone's best source of vitamins, minerals and nutrients.

Fresh whole foods are far superior in nutrients to anything that is processed and put in a can.  One of the most noted benefits of starting a blended diet is that the tube-fed person digests food better.  Of course! That's because food was designed for our bodies to break it down and use its nutrients. We weren't designed to break down chemicals.  With better digestion comes a list of positive outcomes to include: healthier looking hair, nails and skin; improved weight gain or weight loss as the case may be; less gas/bloating, constipation, reflux, and vomiting after feeds; and more energy - to name a few.

The nutrients that come from foods are just not the same as the nutrients that come in a can.  Science cannot replicate fresh whole foods.  Fruits and veggies are packed with antioxidant phytochemicals, which are basically just the natural compounds of the plant. There is also a natural combination and interaction of phytochemicals and macro nutrients (proteins, fats and carbohydrates) that occurs with whole foods that can't be duplicated by mixing different vitamins together. 

Where to Start:

This is the hardest part, starting.  Don't feel as though you have to jump right in, don't get overwhelmed.  Starting a blended diet is a process -- a very slow, gradual process. You will learn as you go.  

The very first thing you need to think about is what exactly your Rett Girl needs.  Make a list of any intolerances or allergies.  Next, decide whether your Rett Girl needs to maintain or increase her weight.

Finally do a little research into a simple, balanced diet and an approximate calorie amount.  This is the step that scares a lot of people, but think of it this way: it's not so scary to prepare a balanced meal for an oral eater and you typically don't spend too much time counting the calories on the plates of your other family members, so relax and don't overthink this part, either.  Ask your daughter's GI specialist or pediatrician for a referral to a registered dietitian or a nutritionist who may be able to start you out on the right foot if you want some support.

Transitioning:  

This is the part where you need to go slow.  A few things that will determine how slow your transition will be: how long your Rett Girl has been on formula and if she is still able to tolerate some oral feeds or not, and her overall tolerance.  

If your Rett Girl has not had oral foods in a number of years and you are not yet sure if she has any intolerance to certain foods you may want to start with introducing one ingredient at a time just as you did when she was a baby first starting out on solids.  You can either introduce them on their own in between feeds, or blend them in with her formula.  As you add foods you can start to combine them to give her more of a complete meal, decreasing the formula as you go.  

Some families start with baby foods.  Stage 1 baby food can be given straight through the tube and can sometimes be an easy and much less intimidating start when moving to a blended diet.  Stage 2 and up foods need to be blended and put through a strainer to make sure they will go through the tube.  Many families will start this way and just replace one meal or feeding for a certain amount of time and then replace another feeding and gradually work up that way.  

Other families jump right into blending and will choose to blend whatever the entire family is eating at a certain meal or create a "staple" meal that includes all the nutrients needed but can be customized by changing the fruit, veggie, or protein to give some variety.

You can find information on how to create your own recipe here or check here for some sample recipes.  Here is an example of one of the recipes:

1 C. dark chicken meat
1 C. amaranth
1 C. brown rice
2 C. sweet potatoes
1/2 C. walnut oil
handful of fennel seeds
4 C. water to blend

If you're not sure exactly how to move forward you can see how one Rett family moved through the stages of starting out here.

There are many different ideas of a "balanced" diet out there but a place to start is just by starting with the basic food groups and using appropriate portion sizes for your Rett Girl's age.  Or, you can get a little more technical and start with the "macro nutrients" or the proteins, fat and carbohydrates (carbs) in foods.

Every person has different needs but a starting point is to go for 40% of the total calories from carbs, 30% from protein and 30% from fat.  Carbs and protein have 4 calories per gram and fats have 9 calories per gram.  So, if you have a food that has 5 grams of fat then 45 calories of that food are from fat.  You can do this simple equation for each macro nutrient in each food that will be blended and get a total of what your Rett Girl will take in through her diet.  

Tips 

1.  Always check with your Rett Girl's doctor before changing her diet, but don't be intimidated.  You are your child's best advocate and if you see a benefit to transitioning her to a blended diet make sure you voice your position.

2.  Seek the advice of a registered dietitian or nutritionist.  If nothing else then for peace of mind that you are including all of the nutrients that your Rett Girl needs.

3.  Remember water!  You can find general guidelines of hydration needs here and can add the amount of water you need to each feed.  Some parents, however, find a huge benefit to giving water 30 minutes before each feed.  Even just an ounce or two can help "prep" her stomach for food and maybe help with gastric emptying.   

4.  Invest in a good quality blender like the blendtec or the vitamix.  These blenders have the ability to liquefy food so you don't need to strain your blend before you put it through the tube.  They can be pricey, but contact the company and they should give you a refurbished one that is discounted with a doctor's note.

5.  If you are planning on overnight pump feeds you will want to be very cautious about the food spoiling.  Try the Koala by Feeding Essentials to keep food cool throughout the night.  

Resources:

Blended Food Resource Group

Feeding Tube Awareness Foundation

Lucy's Real Food - a comprehensive site about blended food for people who are tube-fed

Vitamix Blender

Blendtec Blender

By Bridget MacDonald, RettGirl.org Coordinator
Bridget graduated from Western Michigan University in 1999 with a B.A. in Nutrition.  She worked as a clinical, registered dietitian at William Beaumont Hospital and was a program director at the American Diabetes Association prior to having her daughter, Annie, who is diagnosed with Rett Syndrome.

2013 Father's Day Blog Series

For the week leading up to Father's Day, some very special Rett Dads have shared their stories with us. Here is a complete list of our eight guest blogs for Father's Day 2013 plus our Tribute Video.

Matt Greenlaw, Teagan's dad - "A Really Real Hug"
Chris Langan, Ilah's dad - "My Little Sweet Pea"
David Bousson, Leah's dad - "Bear Hugs, Headphones, Dora... and more Dora"
Ed Samaro, Kaitlyn's dad - "Ed and Kaitlyn's Special Bond"
Wally Trester, Courtney's dad - "Looking at the Bright Side"
Mike Prask, Zoe's dad - "Zoe Knows Best"
Will Rabke, Anna Cate's dad - "Our New Family Values"
Tony Shober, Ysabel's dad - "Finding the Windows"

"Finding the Windows"

Happy Father's Day! All week we have had some very special guest bloggers: Rett Dads. Just because their daughters girls have Rett Syndrome does not mean they are still not "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

 

Happy Father's Day! The last post in our series is from Tony Shober, Ysa's dad

In 2008 our youngest daughter Ysabel was diagnosed with Rett Syndrome, after 18 months of knowing, despite being told to the contrary, that something was subtly yet very different with our little girl.  Our friends at GP2C asked if I could share some insights about being a Rett father for their June blog - some brief thoughts follow.

One of the most useful anecdotes I have heard regarding people with special needs came from a neighbor, whose children are now fully grown, but whose older brother contends with hard challenges on the autism spectrum.  We had only just received Ysa's diagnosis, and were going from group to group at a neighborhood block party, still feeling pretty raw, relating what was new with all our kids, with some emphasis on Ysa.

He heard us talking from across a group and walked over and asked if he could sit with Ysabel for a bit.  He is a bear of a man, and someone I would not have pegged for sensitivity, yet he scooped up Ysa in his arms, plopped her down on his lap, and sat patiently with her, chatting with others, until they could meet one another's gaze.  It took some time but when they connected he got a huge smile from Ysabel, a raspberry or two and lots of laughter and smiles.

He explained to us that a majority of the time his brother deals with the pathology of his disorder but that there were windows, moments in time, when the clouds seemed to part and they could really connect. It has been that way since their childhood together.  He felt that you needed to recognize these windows and take advantage of every one of them.  It is a simple, instructive observation.  He kept Ysa for another ½ hour or so, seeming to take real pleasure in the moments between them.  It was an epiphany for me as a Rett father.

The Christmas following Ysabel's diagnosis we were at Mass with family and my Father in Law, Bob, asked if he could sit with Ysa for the long service.  Bob possesses the understated conservatism of our parents' generation, and was really struggling as he watched his daughter and granddaughter deal with our new reality.  Ysa was in the thick of her regression phase with Rett, and holding her entailed some real patience.

The Mass was packed, and at one point Bob got up to walk with Ysa as she was crying, and we were separated until the end of the service.  We felt a little guilt admitting it, but it was a relief to have an hour or so of respite with our other 2 kids knowing our little baby was safe with family.  Back at home that evening we sat down to talk over a cocktail and Bob related simply "that something passed between us that night" (Bob and Ysabel) and that he was moved profoundly by it.  He has become a real friend to Ysa:  he loves to sit with her at parties, he joined us at Disney and accompanied Ysa, pushing her in her wheelchair for the entire week, he sits with Ysa on his lap while watching the films of his era at our home.  In short, he found the connection.  Fantastic.

For me a challenge of being a Rett father is trying to set the stage where Ysabel can connect with others and visa-versa, recognizing that while she fights through the haze of her symptoms,  that she is acutely aware of the world around her.  Strangers and family alike struggle at first with behaviors for which they have no experience or framework - the seizures, medical gear, hand wringing, inability to easily match one's gaze, vocalizations, crying and eating issues that do not seem age appropriate.  Children stare in a way that makes you cringe.  This being said, with each occasion that you summon the patience to show that Ysabel is a sweet little girl like any other only with some extraordinary challenges and get people to see past the symptoms, you set the stage for people to connect.  It is a profoundly humbling yet rewarding responsibility.

Yesterday was our summer block party, five years after her diagnosis and the first anecdote above.  It was 95 degrees and humid, Ysa was having a really tough day and we could not bring her outside to socialize.  She was sitting inside watching TV and reading with my mother for most of the afternoon.  Around dinnertime I could not find my middle daughter and her group of friends, and when I went into our home to investigate, I found them in a circle around Ysa laughing and talking in front of the TV.  Ysa was grinning from ear to ear.   To anyone else it might be nothing special, but to me it felt like a hard fought win.

"Our New Family Values"

 

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. 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.

Today's post is from Will Rabke, Anna Cate's dad

We have all heard the saying about “finding the silver lining” in a bad situation; to all of the families that struggle with girls and women fighting Rett syndrome, this must become one of our Family Values.  There are countless ways that Rett syndrome has made me a better person and more importantly a better husband and father, but one of the most important is that my daughter’s diagnosis forced me to develop my own unique set of Family Values.  Here are a few of the new or altered Family Values that I have learned.

Taking it in stride

When your oldest child is impacted by something like Rett, you don’t have “normal” development to compare against, so you just learn to take everything in stride.  This is not an easy change to accept, but it is a change that must be accepted.  Our family celebrates the amazing things that my daughter with Rett syndrome does, and we have learned to celebrate the everyday things that our other two kids do.  Were it not for Rett, we would never appreciate the importance of thanking God for all things, big and small, that each of our children do everyday.

Perspective

Perspective is another great lesson that I have learned from my daughter.  My little girl has Rett syndrome, but I am blessed that she has a mild form of this devastating monster.  There is absolutely nothing that I will face which comes close to the battles that my daughter wins against Rett syndrome everyday.  “Bad day at the office?” Really? How about finally succeeding to grasp a cup after thousands of failed repetitions of having to force your own hands to, first, separate from their constant clasp, then hold a cup so that you can drink on your own.

Grief

I would be lying if I failed to describe a bad Family Value that accompanies having a daughter with Rett syndrome, grief.  For the months that my wife and I waited to get the genetic results back, which confirmed what our daughter had, I stayed up nightly researching Rett syndrome, just hoping that I would find something that would prove that my little girl did not have this.  Unfortunately, by the time, I took the fateful call from the geneticist confirming my daughter’s diagnosis, I knew that she had Rett syndrome.  My tears had been shed over the prior months as I sat up at night searching for some different answer, so I was somewhat prepared when I finally heard those words, “The genetic tests confirm that your daughter has Rett syndrome.”  But, after that initial moment of loss, the feelings of grief still arise when something makes me wonder “What if?”  For a couple of years after our diagnosis, I could not handle watching a father give away his daughter at a wedding or share the first dance at the reception, because it made me ache to share those moments with my own princess one day.  Now, the grief is triggered when I see other girls do something that I wish my own daughter could experience, usually something little, like taking off on a bike to a friend’s house.

Hope

Finally, Rett has taught me and my family to Hope.  I hope that one day, my precious, little girl will tell me she loves me, give me a hug and walk away to live her own life.  Amazing how visualizing one’s daughter being able to do those things would be such a miraculous dream come true.  Hope must be constant and unfaltering.  Our family shares a hope for our daughter to continue to grow and learn new skills, and a hope that a cure will be found before the Rett monster breaks our little girl’s body apart.