Monday, September 30, 2013

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?


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

Monday, September 16, 2013

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.


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.  


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.  


By Bridget MacDonald, 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.