Tuesday, February 26, 2013

The Mission Project

About The Mission Project


The Mission Project enables capable adults with developmental or cognitive disabilities to live independently and safely in community with minimal support.


The project strives to create a community and support systems for participants to enable them to live as fully and independently as possible while providing them with opportunities for:
  • Finding and maintaining meaningful employment
  • Socializing with peers
  • Learning in a variety of continuing education classes and cultural activities
  • Participating in recreational activities
  • Getting and staying fit
Check out more info:


Where Exceptional People Live Extraordinary Lives

Can you imagine a place in Hampton Roads where adults with mild to moderate intellectual disabilities realize their full potential and goals through experiencing personal independence, purposeful employment and fulfilling social interaction? Now imagine that this community, situated on beautiful acreage with walking trails, gardens and orchards, is also home to companion animals, horses, shops and classrooms, and filled with innovative educational, vocational and recreational opportunities in a least restrictive yet secure environment. A place like this may only be a dream for most communities, but in Virginia Beach, that dream is about to become a reality. It's called Vanguard Landing, where exceptional people will live extraordinary lives.


Friday, February 22, 2013

Special Needs Parenting and Working

As a working mother, one question that I get a lot is..."How do you get it all in?".  The answer to that questions is simple.  I have amazing support.  My family and job are amazing.  Emmalin is able to come to work with me which is such a blessing.  I am married to such an amazing man and our other children are incredible.  We have great medical support and even better support from therapist. 

Early on we were on the go a lot because of doctor appointments.  So immediately I knew that Emma's therapy items would have to be mobile.  In 20 months I have perfected what works for us.  Now I can do therapy any time of the day.  Even while waiting for my gas tank to fill up.  Below is a check list of what we try to get in each day.  The program is a combination of what I want to do plus her ND program with NACD.  Now some days we get it all in, some days only half and some days none.  I use to put a lot of pressure on myself to get it all in but quickly realized that if it is a lot for me, imagine how hard it is for Emma.  Also, when you have 7 therapy sessions a week and a 2-3 hour nap each day, work plus travel time, dinner to cook, clothes and dishes to wash and other children that need help with homework and baths, time tends to be a problem.  Our theory...some is better than none.

Now I have blacked out Emma's specific program items.  Her program is designed for her specifically from NACD and us.  I check off the items as I do them.  Some things we do 2-4 times a day.  Some as many as possible and some only once, again all specific to Emma.

Computer for BrillKids programs and IPad for apps.

Oral Motor Therapy

Receptive language

Animals and sounds


Sensory, books and more receptive/expressive language

Everything in one nice neat place.  This bag is the tote from
Amazing how much this bag can hold.

Emma at work!  My desk is somewhere in here I promise.

Saturday, February 16, 2013

Phosphatidylcholine (PC) - You will want it to try it.

Phosphatidylcholine (PC) is an amazing substance that is already part of our body.  This video gives a great presentation of how it is necessary to function.  The presenter is 85 years old and is from the company Body Bio, which makes a product called BodyBio PC.  He states there are only 3 brands of PC that do not contain oil, I will post a picture from my screen of those products.  He also shows numerous brands whose products contain oil, which render the product useless.  He will explain why during the presentation.  Although the video is somewhat lengthy (19 minutes), it is worth watching.  I found it fascinating, especially since this is something we added to Presley's afternoon smoothie a few weeks ago.  Currently we are giving 2.5 cc and will work our way up to the recommended dose of 5cc (1 tsp) very soon.  If you purchase this product, I would suggest you contact the company to be certain it is actually available, since Tricia and I went through several companies that charged our credit card, but after waiting a month each time we found out they did not have the product in stock.  You can purchase through BodyBio or amazon. It is not cheap, but you use such a small amount, one bottle will last awhile.   Blessings, Robin

Here is the video:  http://www.bodybio.com/content.aspx?page=PhosphatidylcholineVideo

Amazon link to product: http://www.amazon.com/BodyBio-E-Lyte-PC-3000/dp/B00116B6FK/ref=sr_1_4?ie=UTF8&qid=1361053521&sr=8-4&keywords=bodybio+PC

These are the products who do not use oil in their products, which make it effective:
BodyBio PC, Xymogen, and Nutrasal Phoschol

Products not to use because they contain oil.  

As always, I like to reference Andi Durkin's page, she does so much research that helps us all.  Thanks Andi!


Friday, February 15, 2013


You’re probably well aware that carbs like French fries, potato chips and white bread can be empty calories that help you pack on the pounds. But did you know they can also contain a toxic by-product of the cooking process that’s been linked to cancer?

The substance is called acrylamide. It’s an industrial chemical known to increase infertility and neurological problems at high doses. The EPA regulates acrylamide in drinking water to protect public health. But it’s not regulated in food.

We haven’t known about its presence in food for long – because it’s not an ingredient or a contaminant. How does it get there? Here’s how: Certain natural sugars and certain natural protein building blocks become fused together to form acrylamide when temperatures top 250°F (typical toasters top 300°F). Many foods don’t have the right combo of nutrients to produce acrylamide, even when cooked for a long time, but a few very popular ones do.

Here are the top foods to be aware of:
  • French fries and potato chips
  • Crackers
  • Toasted breakfast cereals
  • Cookies
  • Bread

And, the browner the toast or cereal or potato, the more acrylamide it likely contains.

All other things being equal, frying produces the most acrylamide. Roasting is better. Baking better still. And when it comes to acrylamide, steaming or boiling can produce none at all.

Fast Facts
  • The amount of acrylamide in a typical large order of fast food fries can be 200 to 2000 times the amount allowed by the EPA in a glass of water.
  • The #1 source of calories for American kids is cooked white flour snacks and treats.
  • The top two “vegetables” eaten by kids are French fries and potato chips.
  • Experts suggest that 30% of all cancers are caused by diet. Perhaps acrylamide plays a key role.
The Good News

Now, the good news: There are easy ways to reduce your exposure and protect your family.

The basic idea is to dial it back. Dial back the temperature, dial back the cooking time above 250° F, and dial back the number of servings of french fries or crackers. Here’s how:

Change how you prep carbs.
If you’re going to cook potatoes, consider putting them in a bowl of water 30 minutes before you cook. This can cut acrylamide levels by up to 38%. Soaking for two hours does even more and doesn’t take extra work, just a bit of forethought. Even rinsing potatoes before cooking helps.

Here’s another trick: Store potatoes in a cool place but NOT the fridge. Storing potatoes in the fridge prior to cooking increases acrylamide when you bake them.

Many kids like the crusts cut from sandwiches, and they might be on to something! Crusts have the highest acrylamide content before and after you toast it.

And if you bake your own bread, add some rosemary (roughly 1 teaspoon) to dough prior to baking. This can reduce acrylamide by up to 60%.

Change how you cook carbs.
Next time you roast potatoes, take them out when they’re golden yellow rather than crispy brown.

If you want to eat potatoes and avoid acrylamide altogether, consider steaming or boiling.
The water can keep the temp at 212°F, below the 250 °F needed for the acrylamide reaction. Microwaving also does not tend to create acrylamide.

Toast your bread for a shorter period of time and at the lowest level. Or skip the bread altogether. Make your sandwich or burger on a butter lettuce wrap.

Change what carbs you cook.
Try broccoli, cabbage, cauliflower and Brussels sprouts. These are all cruciferous vegetables and contain agents that could both deactivate cancer-causing chemicals and stop the growth of existing cancer cells. So, five or more servings a week could offer dual protection against the effects of acrylamide. (I’m not suggesting you can have all the fries you want if you eat broccoli! We don’t know of any foods that get directly rid of acrylamide in your body, but cruciferous veggies have been linked in some studies to lower cancer risks.)

Keep in mind that this isn’t a new problem. We’ve been eating acrylamide in foods for a long time, we just didn’t know it. There’s no reason to expect a new epidemic. I’m most concerned about this problem for women, since acrylamide has been shown to affect reproductive organs, and for kids, since they’re still developing and more vulnerable to carcinogens in general.

While it’s not a new problem, we’re talking about a new solution. By reducing acrylamide, there’s a chance we could lower cancer risk and neurodevelopmental problems.


What solution is the industry implementing?

The industry's acrylamide mitigation efforts are truly global in scope. The industry has developed a special process using the enzyme, asparaginase, to mitigate acrylamide's natural formation in dough-based foods. This process has been implemented worldwide in every country that has approved the process.
In Europe, a guidance document or “Toolbox” has been developed by the European food processors' trade association (FoodDrinkEurope), in collaboration with European regulators and with input from the GMA and many of our member companies. The toolbox highlights possible ways to reduce acrylamide in different types of products. The industry follows this guidance and has implemented many of the techniques as well as others that industry discovered through its own research.

Will these changes eliminate acrylamide from all products?

Currently, there does not appear to be a practical and effective method for completely eliminating acrylamide from many kinds of products. There is not a single solution that can be applied to all foods. Nevertheless, through research and innovation, the industry is discovering ways to reduce levels of acrylamide in many foods and continues to develop innovative ways to reduce levels even further.


Are there other ways humans are exposed to acrylamide?

Food and cigarette smoke are the major sources of acrylamide exposure.  Exposure to acrylamide from other sources is likely to be significantly less than that from food or smoking, but scientists do not yet have a complete understanding of all sources of exposure. Acrylamide and polyacrylamide are used in some industrial and agricultural procedures, and regulations are in place to limit exposure in those settings.

The information in this post is simply meant to inform-not to totally overwhelm.  I certainly do not expect my family to make such a lifestyle change to cut acrylamide out of our diet.  But after researching I will make some changes to decrease our intake.  This morning while making sandwiches for the kids lunch I cut the crust off.  The next time I am eating french fries I might skip over the darker ones.  I will not allow my french bread to get too toasted when making it.  I may skip the toasted cereal in the morning and just have fruit.  These are just some of the corrections that I will make from this point forward-now that I know a little more about acrylamide.

From Robin:  My husband is the medical officer for a military team that deals with Weapons of Mass Destruction.  I showed him Tricia's article and he informed me that Acrylamide was the neurotoxin as the mystery substance in their last training exercise.  I find this very interesting and yet depressing.

Saturday, February 9, 2013

One Way to Get Supplement In

Emma's Morning Milk

Over the next few months I will be posting on this blog some of what I believe are the most important things that I add to Emma's daily diet.  From the very beginning we had to deal with reflux issues with Emma so there were some supplements that seemed to cause spit up for her.  One supplement that we continually had digestive issues with was Nutrivene D.  I attempted dosing every way possible but Emma just could not handle it.  I knew the importance of the Nutrivene so I began to look for ways to get other vitamins and minerals she needed through her food diet.  I will reintroduce Emma to Nutrivene later when I feel she may be able to handle it, but for now this is some of what we do:

First things first-we only use raw goat milk when available, if not we use store bought with Emma.  The proteins in cows milk are just too much for the belly and the dairy attributes to so many congestion problems.  You will not find a lot of medical people that will agree that milk = congestion, nor will you find studies that support it but I am here to tell you...when your child is miserable you will try anything and when we keep dairy out of Emma's diet, congestion and reflux are not an issue.  Our genetic doctors at Arkansas Children's Hospital also agree that eliminating dairy when congestion is an issue is the first step.  Not to mention the health benefits of goat milk greatly out weigh those of cow's milk. 

Learn more:

Keeping Emma's nose clear of congestion has created a child that breaths through her nose and not her mouth.  There are so many pieces to our puzzle, some small and some big...this is a big part of our equation to success.

Next is flax seed oil for a variety of reasons.  First, flax is a great source of fiber. Most Americans do not get enough fiber in their diet. Each tablespoon of flax contains about 8 grams of fiber. This helps keep the bowels regular.

Second, flax is a plant source of omega-3. Once again, most Americans are short on their omega-3 fatty acids. These essential fatty acids ("essential" meaning they must be consumed because our bodies don’t make them) play an important role in the anti-inflammatory system of our body. Flax contains the shorter chain omega-3 called ALA (alpha-linolenic acid). Thus, it is not a replacement for fish or fish oil supplements that contain DHA (docosahexaenoic acid) and EPA (ecosapentaenoic acid.)

Make sure that it has the "press date" shown to insure freshness.

Bernard Jensen's Rice Bran Complex is next on the list.   Rice bran complex is a concentrated combination of B-Vitamins which is easily absorbed into the body. These B-Vitamins work together to create a synergy to aid the conversion of food into energy, as well as help the nervous system recover from the effects of physical stress.  Each serving (15 ml) has 3 mg of Thiamin (B1), 187 mcg of Riboflavin (B-2), 53 mg of Niacin (B-3) and 50 mcg of Pryidoxine (B6).  I give Emma 5 ml with AM, Noon and PM cup of milk.


Then there is Bernard Jensen Black Cherry Concentrate Extra Quality.  It is thick, rich, and a good source of iron. It is made from the entire fruit including the skin and pit and it may be used as a sweetener. Although native to North America, wild cherry trees now grow in many other countries. The bark of the wild cherry tree is used for medicinal preparations. Wild cherry syrup has been used traditionally by herbalists to treat coughs and other lung problems. It has also been used to treat diarrhea and to relieve pain. Wild cherry tincture or syrup is sometimes recommended for coughs.

Then there is Liquid Vitamin C.  The whole family gets extra Vitamin C every day and Emma is no exception. Vitamin C is one of the safest and most effective nutrients, experts say. It may not be the cure for the common cold (though it's thought to help prevent more serious complications). But the benefits of vitamin C may include protection against immune system deficiencies, cardiovascular disease, prenatal health problems, eye disease, and even skin wrinkling.  

A recent study published in Seminars in Preventive and Alternative Medicine that looked at over 100 studies over 10 years revealed a growing list of benefits of vitamin C. 
"Vitamin C has received a great deal of attention, and with good reason. Higher blood levels of vitamin C may be the ideal nutrition marker for overall health," says study researcher Mark Moyad, MD, MPH, of the University of Michigan. "The more we study vitamin C, the better our understanding of how diverse it is in protecting our health, from cardiovascular, cancer, stroke, eye health [and]
immunity to living longer."

"But," Moyad notes, "the ideal dosage may be higher than the recommended dietary allowance."

How Much Vitamin C Is Enough?

Most of the studies Moyad and his colleagues examined used 500 daily milligrams of vitamin C to achieve health results. That's much higher than the RDA of 75-90 milligrams a day for adults. So unless you can eat plenty of fruits and vegetables, you may need to take a dietary supplement of vitamin C to gain all the benefits, Moyad says. He suggests taking 500 milligrams a day, in addition to eating five
servings of fruits and vegetables.

"It is just not practical for most people to consume the required servings of fruits and vegetables needed on a consistent basis, whereas taking a once-daily supplement is safe, effective, and easy to do," Moyad says. He also notes that only 10% to 20% of adults get the recommended nine servings of fruits and vegetables daily.

Moyad says there is no real downside to taking a 500-milligram supplement, except that some types may irritate the stomach. That's why he recommends taking a non-acidic, buffered form of the vitamin. "The safe upper limit for vitamin C is 2,000 milligrams a day, and there is a great track record with strong evidence that
taking 500 milligrams daily is safe," he says.


Then there is the wonderful Vitamin D supplement.  Again another one
that everyone in the family supplements.  We also supplement it higher than the RDA recommendation.  Especially during the winter months.

Vitamin D may actually be the more critical vitamin when it comes to fighting off colds. An important member of Dr. Oz's anti-aging checklist, vitamin D plays a number of roles in our bodies, including:
  • Promoting absorption of calcium and bone health
  • Boosting immune function
  • Reducing inflammation
  • Healthy neuro-muscular function
  • Protecting against some forms of cancer

For such an amazing nutrient, vitamin D doesn't always get the attention it deserves, perhaps because very few foods in nature contain vitamin D. The best sources are salmon, tuna and mackerel (especially the flesh) and fish liver oils. Beef liver, cheese and egg yolks also contain small amounts. If these foods don't sound very appealing to you, there is good news: you don't have to eat
vitamin D to make sure you're getting your daily dose! Vitamin D is actually produced in your body when ultraviolet rays from sunlight strike your skin. The UV rays trigger synthesis of vitamin D, which then gets converted in your liver into its active form.

This means one of the best ways to get vitamin D is to spend about 10-15 minutes a day outside in the sun. Keep in mind that wearing sunscreen will prevent you from getting adequate vitamin D outdoors. In the summertime, an easy solution is skipping sunscreen on your legs for the first 15 minutes in the sun. Just make sure you apply in time to prevent any burns or damage.

If this sounds complicated (or it's cloudy!), there's an even easier way to get your vitamin D: many foods in the American diet are fortified with this essential nutrient. In fact, fortified foods provide the majority of vitamin D in our diets. Almost all of the US milk supply is fortified with 100 units per cup - that's about 25% - 50% of the recommended daily dose! This means milk packs a double
punch for bone strength. Milk contains a good amount of calcium and the additional vitamin D to ensure that your body absorbs all that calcium.

So exactly how much Vitamin D should you aim for each day? For all ages, Dr. Oz recommends a daily dose of 400 IU (and perhaps even as high as 1000 IU).  Chad and I take 2000 IU and the kids are closer to the 1000 IU mark.

Sambucus Elderberry, Echinacea and Propolis for Kids is next.

Elderberry is a plant. The berries are used to make medicine. Do not confuse elderberry with American Elder, Elderflower, or Dwarf Elder.

Elderberry is used for “the flu” (influenza), H1N1 "swine" flu, HIV/AIDS, and boosting the immune system. It is also used for sinus pain, back and leg pain (sciatica), nerve pain (neuralgia), and chronic fatigue syndrome (CFS) .

Some people use elderberry for hay fever (allergic rhinitis), cancer, as a laxative for constipation, to increase urine flow, and to cause sweating.

Elderberry fruit is also used for making wine and as a food flavoring.

How does it work?

Elderberry might affect the immune system. Elderberry seems to have activity against viruses including the flu, and might reduce inflammation.

Then of course we use Children's DHA. DHA is required in high levels by the brain and retina as an essential nutrient to provide for optimal neuronal functioning (learning ability, mental development) and visual acuity.

Studies have been done on children with autism and with other developmental differences, and the results showed that after 3 months of taking DHA & EPA, there was a 6 month improvement in reading and spelling levels, as well as significant behavioral improvements.


DHA is another one the whole family supplements. 
DHA is important for brain and eye development and function throughout the life stages, but is particularly important during the first two years of life and early childhood. Between birth and five years of age, the human brain increases approximately 3.5 times in mass. During this time it is important that children consume adequate amounts of DHA in their diet to support this period of rapid brain and eye growth and development.

DHA provides a number of important health benefits to children, including:
  • Supports normal cognitive function
  • Supports brain and eye development and function
  • Supports a healthy heart

Recently published research suggests that for children ages 7-9, who are under performing in reading showed improvement after adding DHA to their diet.  A healthy diet that achieves 600 mg of DHA daily may support improvements in reading, memory and behavior.

Why It's Important to Provide DHA for Your Children

American children consume an average of only 30 to 50mg of DHA per day. It’s no surprise that children consume less than optimal levels of DHA. Foods that naturally contain DHA are limited to organ meats and fatty fish, which are not commonly consumed by young children. In addition, picky and unbalanced eating habits, food allergies and a recent FDA warning for young children to limit consumption of certain types of fish due to concerns over high levels of mercury, make it difficult for parents to ensure their children are obtaining optimal levels of DHA.

Fortunately, as awareness of the importance of DHA continues to grow, more attention is being paid to the fact that young children may benefit from getting more DHA in their diets. A growing awareness of the dietary sources of DHA and the inclusion of DHA into follow-on formulas and certain fortified foods are making it easier for people of all ages, including young children, to obtain this important nutrient from their daily diets.


A fairly new one on our list is Black Cumin Seed Oil.  Black cumin is a part of the buttercup family and the seeds are dark, thin, and crescent-shaped when whole. The seeds have been used for many centuries in the Middle East, the Mediterranean and India. Today, black cumin seeds are used as a seasoning spice in different cuisines across the world due to their nutty flavor. Besides their culinary uses, black cumin seeds also have a wealth of important health benefits and are one of the most cherished medicinal seeds in history.

The seeds of the black cumin plant contain over 100 chemical compounds, including some yet to be identified. In addition to what is believed to be the primary active ingredient, crystalline nigellone, black cumin seeds contain: thymoquinone, beta sitosterol, myristic acid, palmitic acid, palmitoleic acid, stearic acid, oleic acid, linoleic acid, linolenic acid, arachidonic acid, protein, vitamin B1, vitamin B2, vitamin B3, folic acid, calcium, iron, copper, zinc, and phosphorous.

Black cumin seeds have a particularly long and strong history of use in Egypt. When archaeologists found and examined the tomb of Egyptian boy-king Tutankhamen (King Tut), they found a bottle of black cumin oil, which suggested that it was believed to be needed in the afterlife.

Physicians to the Egyptian pharaohs frequently used the seeds after extravagant feasts to calm upset stomachs. They also used the seeds to treat headaches, toothaches, colds, and infections. Queen Nefertiti, renowned for her stunning beauty, used black seed oil, likely due to its abilities to strengthen and bring luster to hair and nails.

Hundreds of studies have been conducted on black cumin which have shown that compounds from the seeds help fight diseases by boosting the production of bone marrow, natural interferon, and immune cells.

Several of the studies have shown that black cumin seed extract could assist individuals with autoimmune disorders and could possibly help to fight cancer. One recent study on black cumin seed oil demonstrated that it was effective against pancreatic cancer, one of the deadliest and most difficult to treat cancers.

See: www.naturalnews.com/023348.html

Learn more: http://www.naturalnews.com/030800_cumin_seeds_health.html#ixzz2KNR2KhbR

I saved the best for last.  Some will disagree with this but it will continue to stay in Emma's daily diet for all of its benefits or until her doctors and nutritionist change their opinion of what is right for Emma.  Here is a good article regarding raw eggs:

The Health Benefits of Raw Eggs
By John Claydon D.Hom

The process of cooking eggs destroy the very goodness that our bodies so desperately need as the nature of proteins and fats is altered when exposed to heat. When cooked, the egg protein changes its chemical shape; it is often this process that can be the cause of allergies. Generally when eating raw eggs, any incidence of egg allergy will disappear.

Surprisingly, in spite of ‘bad press’ raw eggs, organic or at least from a known source of healthy free-range chickens, are an excellent health tonic. The regular consumption of raw eggs will do wonders for your overall health. Exceptionally easy to digest, raw eggs provide a wonderful boost to the immune system, and a completely balanced nutritional package. A good immune system is one of several things the body needs to overcome cancer.

Many people’s diets are deficient in high quality proteins and fats, and eggs are one the very best sources of these. Raw eggs have many benefits, they contain essential nutrients for the brain, nerves, glands and hormones, they are nutritionally balanced, and we highly recommend the addition of raw eggs to your nutritional program. The sulphur amino acids help to keep you young, raw eggs also contain an abundance of other vital substances including protein, essential fatty acids along with niacin, riboflavin, biotin, choline, vitamins A, D and E, magnesium, potassium, phosphorous, manganese, iron, iodine, copper, zinc and sulphur. Egg yolks are one of the few foods that contain vitamin D.

Poisoning from salmonella has been exaggerated in the past. A study by the U.S. Department of Agriculture in 2002 indicated that only 2.3 million, of the 69 billion eggs produced annually, are contaminated with salmonella. In other words 0.003% or 1 in every 30,000 eggs. The bulk of these come from battery chicken eggs and chickens kept in unhealthy conditions - only sick chickens lay salmonella contaminated eggs. If only healthy chicken eggs (organic and free range ideally) are consumed, then far less than one in 30,000 eggs are contaminated. Salmonella is a common micro-organism found almost everywhere, and is just as likely, or more likely, to proliferate on cooked food kept in the fridge. Infection is normally mild gastric symptoms, but in rare cases where the immune system is very low such in the elderly who have had much anti-biotic use, and the source is greatly contaminated, death can result. But such a person is highly likely to contract one of many common micro-organisms and die from that. To give some perspective, in the highly unusual situation of contracting Salmonella, in a healthy person, an infection is nothing to worry about and is easily treated with high quality pro-biotics every half an hour until you feel better.


Now I know that it seems overwhelming but it is not.  I mix it up the night before and put it in our magic  bullet (my favorite thing in our kitchen).

I keep a laminated index card that has the ingredients to different things that I make for the family.  I have Emma's milk, our smoothies and thermocereal.  Each night I make Emma's milk and our smoothies and put them in the refrigerator.  When we wake up in the morning all we have to do is blend and off we go.

Please know that this is what WE do.  There are some things that I do with Emma that Robin does not do with Presley and vice versa.  All of our children are individuals and need different things.  This, in my opinion, is what Emma needs.  I have discussed this with her doctors and nutritionist and they too agree with her diet-every part of it. They may not all promote this diet for everyone, but support this diet for what it is...Emma's diet.  Please research what is right for YOUR child. 

Below is a break down of the cost of each item. 

Bernard Jensen Rice Bran Syrup is around $13.00 for 16 oz.  (473 ml).  I give Emma 15 ml per day so it will last around 1 month.

Bernard Jensen Black Cherry Concentrate is around $16.00 for 16 oz. (473 ml). I give Emma 15 ml per day so it will last around 1 month.

Flax Seed Oil is around $17.00 for 16 oz.  I give Emma 5 ml per day so it will last close to 3 months. 

Liquid C is $5.00 for 8 oz. (237 ml) and I give Emma 5 ml per day so it will last around 1 1/2 month.

Vitamin D is around $9.00 for .34 oz.  Emma gets 4 drops in her milk each day so it too will last me 3 months.

The Organic Valley Eggs run around $3.50 for a dozen so that breaks out to about $.29 per egg which equals $8.50 per month.

The Sambucus is between $10.00-$15.00 depending on where you get it.  I will split the difference to be fair so we will say $12.50 for 8 oz.  Emma gets 5 ml per day so it to will last about 1 1/2 month.

Black Seed Oil is $18.00 for 8 oz. but I only put a squirt of it in.  I am on my first bottle but it will probably last well into 6 months.

Children's DHA is $35.00 for 16 oz. and Emma gets about 5 ml of it every day so it will last a little over 3 months.

That puts our average monthly cost for this item at $53.00 plus the cost of the milk.  The milk would be an expense regardless.  I only took 1/3 of the cost of the Bernard Jensen products for sake of figuring the cost of this particular serving of milk.  Emmalin has 3 items in her diet that our essential and this is one of them.

But like I said before...this is what works for us.  Emma is currently 19 months old, 25 lbs and a little over 31 inches long.  She had her heart surgery at 3 1/2 months and we have battled thyroid problems since before her surgery.  Our little Down syndrome darlings tend to be so small and sickly.  Emma's success with her growth and her continued days of being healthy I attribute to her overall diet.  I have only taken Emma to the doctor two times for what I considered a "sickness" and it turned out to be the common cold.  There was not a fever associated with either time, I am just overly cautious this year with everything that is going around.  Also, please remember that I have been giving Emma some crazy mixtures all along so she does not mind all of this mixed together.  When she starts turning her nose up I will have to readjust, but it works for now.

I really want to take the time to thank some people that have greatly influenced me and who continue to guide me down a road that many physicians refuse to travel.  Dr. Julian Neil, Dr. Jane Miers, Dr. Steven Kahler and Robin Tolliver are incredibly kind souls who continually help me to do what is best for Emma.  They listen to my concerns and suggestions and I listen to their guidance.  They help me monitor her lab work and we adjust her diet accordingly.  Emma's diet will be changed over the course of time depending on what her body needs and I am confident in knowing that she is in great hands.  My daughter will be all that she can be with people like this in our lives.

Dr. Julian Neil

Dr. Steven Kahler, Medical Genetics

Dr. Jane Miers

Nurse Crystal (we lover her)

Thank you Jesus for guiding all of us through our journey.

Thursday, February 7, 2013

Emma's Reading Video

Just to help everyone understand the importance of what we are doing.  Robin and I both work with NACD, Brillkids, flashcards, videos and we read 10-20 books a day to our kids.  Reading is so important  and just like our 3 year olds and my 12 year old we will encourage reading every day.  We started really hitting the flashcards with Emma about 3 months ago and this is where we are.  We do them 3-4 times a day and it takes less than 2 minutes.  I too am so proud and just want parents to understand that you can never start too early. During the video you will see Emma stand up and sit down.  We are working on building her leg muscles in preporation of walking.  The only way I can get Emma to do this exercise is a Veggie Straw. ENJOY!

Saturday, February 2, 2013

Presley reading at 19 months old

Here are videos of Presley reading this past weekend.  She is 19 months old.  She recently had her speech evaluation and showed zero deficents in receptive language.  See below to learn what we are doing to help teach her!
Via You Tube if you can not click on the above link:
1.  We use NACD (National Association of Child Development)  http://www.nacd.org/  She began on the program at 6 months old.  We drive to Dallas from Little Rock every 3 months for re-evaluation.  It costs over $900 for the initial evaluation, then approximately $230 per month.  We feel it is worth every penny!  Our program does more in one day than any therapist could accomplish in a week with Presley.  The program details exactly how to do flashcards, videos, and photo cards.  It shows you how to teach your child.  The program does more than teach though, it shows you how to do PT, OT, DT, and ST for your child so you are able to help your child each day.  Go to their website and check out their video.
2.  I used the Your Baby Can Read series with my first daughter Payton also.  She is 3 years old now and can read anything you put in front of her.  Initially it is like learning sight words, and the comprehension develops with use and repetition.  If you have ever used the Rosetta Stone for Spanish or another language development, then you will recognize that the method is exactly the same.  Repetition, repetition, repetition!  I use the flashcards that slide out to show the pictures.  Presley was only allowed to watch the YBCR videos when she was younger, and she still loves them.  I also vary up her routine with the lift the flap books, but she likes to hold them and pull on the pages so we only use once or twice a week.  It really is an effective program.
3.  Brillkids.  This is a computer program that takes about 5 minutes twice a day.  It shows the word "horse" then shows a picture of the horse and repeats the word, then shows a video of the horse running and repeats the word again.  It gives you an entire year of daily sessions.  You just simply advance each day or repeat the same day if you want to reinforce, but the same words carry over several days.  You can email Brillkids and provide proof of your child's disability and your proof of income and that will give you a code for 50-100% off of one of their products.  We purchased the big package which included the Little Math also.   http://www.brillkids.com/
4.  I have many items around my house labeled with large words, such as door, window, TV, books, radio.  I also have "take a bath", "go outside, bye bye" and "go to sleep, night night" in appropriate areas as well.  We help her to take notice of these words daily.  Of course she is at the age she just wants to rip them off, so I recommend lots of tape. 
5.  Flashcards.  I purchased flashcards and have made lots of my own.  Some have words on them and some just the picture.  You spend approximately 1-3 seconds on each card then move to the next.  We only spend about 2 minutes a session so we quit before she becomes bored with it.
6.  Books, books, and more books!  You simply can not read enough to your child.  It opens up a wonderful new world to them.  Whether you just point to the pictures and talk about them or go over simple words, just sitting down with your child and reading will help foster a great love of words and reading.

Friday, February 1, 2013

Gluten Free Bread/Bisquits/Pancakes

Gluten has been a tough one for us.  When Emma has too much gluten in her diet I can tell a different in her gut.  She has less energy and her belly is sour.  All of her celiac testing came back negative but I can assure you that it does not agree with her.  We are on a slow journey with gluten and have a long way to go.  The first place we started though was bread.  We have tried bread off the shelf and there is just not one that is edible in my opinion.  We tried many different recipes and still did not have much luck until I stumbled across this recipe.  We now make bread every weekend for the following week.  This bread has substance and is gluten free...I never thought those two things could go together. 

Really Good Gluten Free Sandwich Bread

1 Tbsp. bread machine yeast
1 Tbsp. sugar
1 ½ c. water (105 degrees or a little less than hot)
2 ½ cups of my gluten free flour mix (recipe below)
2 tsp. xanthan gum
1tsp. salt
3 eggs (or 9 Tbsp. water and 3 Tbsp. ground flax seed)
1 ½ Tbsp. oil
1 tsp. cider vinegar

1. Start by combining the yeast and sugar in a small bowl (I use the smallest in my set of three nested mixing bowls). Add the water while gently stirring the yeast and sugar. Let this mixture sit while you mix the rest of the ingredients – bubbles and foam should form if the yeast is happy.

2. Combine the flour mix, xanthan gum and salt in the largest mixing bowl and stir well.

3. In a third bowl, whisk the eggs, oil and vinegar until the eggs are a bit frothy.

4. By this point the yeast mixture should be foamy, so you can pour the two liquid mixtures into the flour mixture. Blend the dough with a mixer for 4 minutes.

Bread Machine Directions:
Scoop your dough into the bread machine and smooth the top of the dough. I bake my bread using an 80 minute setting that allows for 20 minutes of kneading, 18 minutes of rise, and 42 minutes of baking. However, since I don’t use the paddle in by bread machine, I’m effectively doing a 38 minute rise and a 42 minute bake. (The advantage of not using the paddle is that you don’t end up with a hole in the bottom of your bread.)

Conventional Oven Directions:
Scoop the dough into a greased loaf pan. Allow the dough to rise in a warm area until is is about 1 inch from the top of the pan. Then bake at 375 degrees for 50 – 60 minutes.

Other Notes:
  • The masa harina in the flour mix for this recipe is usually available in the Hispanic sections of most grocery stores. Due to the way it is processed, masa harina is very absorbent and you cannot substitute corn meal or corn flour. You can purchase masa harina on Amazon.com if it is not available locally.
  • If you are allergic to corn there is a corn free version of this recipe that uses tapioca starch, almond flour, and guar gum. The recipe is currently available as part of the Gluten Free Bread 101 class 
  • If you are allergic to soy, then you can substitute any of the following flours for the soy flour in the flour mix: sorghum flour, garfava flour, or quinoa flour.
  • If you’re looking for a gluten free milk bread recipe, you can make this bread using milk instead of water. In fact, originally this recipe was developed with milk and then switched to water to cut down on the cost and to make it casein free. If you are on a dairy-free diet, then you may use a plain gluten free non-dairy milk..
  • If you are allergic to eggs, use the flax substitute listed in the recipe, or follow the instructions on your favorite egg replacement powder. When you use the flax eggs, the bread is usually slightly wetter than otherwise.

Gluten Free All Purpose Flour Mix

3 parts brown rice flour (Bob’s Red Mill)
3 parts corn starch
2 parts soy flour, sorghum flour or garfava flour1 part masa harina

Light and Fluffy Gluten Free Biscuits

(Yield: 16 large biscuits)
1 1/2 c. brown rice flour
2 c. corn starch*
1/2 c. soy flour or sorghum flour
2 tsp. baking powder
2 tsp. salt
1 1/2 tsp. baking soda
2 tsp. xanthan gum
1 stick of butter* (chilled in the freezer)
1 1/4 c. soy milk*
1 1/4 c. water
1 Tbsp. cider vinegar*
1 egg, beaten (or the equivalent amount of your favorite egg replacement)

1. Preheat your oven to 350 degrees.

2. In a large mixing bowl thoroughly combine the flours, baking powder, salt, baking soda, and xanthan gum.

3. Grate the butter into the flour using the small holed side of a box grater. Mix the butter into the flour so that there are no large balls of grated butter.

4. Add the soy milk, water, vinegar and beaten egg to the flour and stir until the dry and liquid ingredients are combined.

5. Using a large spoon, drop the dough onto a greased pan to make 16 biscuits. Cook at 350 degrees for 15 minutes or until golden brown.

Grated Butter about to be mixed into flour

Cook’s Notes:

1. If you’re not vegan or dairy free, feel free to use 1 c. buttermilk in place of the soy milk and vinegar. If you’re allergic to soy, try using your usual milk substitute and keep the vinegar in the recipe.

2. You may substitute potato starch or tapioca flour for the cornstarch.

3. 1 stick of butter = 8 Tbsp. = 1/2 c. = 1/4 lb. = 115 grams

4. Earth Balance Buttery Sticks should work if you need this to be casein free.  According to their website the sticks are gluten and dairy free.

5. Thanks to Kate at Gluten Free Gobsmacked for the tip on grating the butter. It was a lot of fun and decreased my prep time by quite a bit.

Gluten Free Pancakes

(Yield: one dozen)
2 1/3 c. of my gluten free flour mix
2 Tbsp. sugar
2 tsp. baking powder
1/2 tsp. salt
1 1/2 c. soy milk (or cow’s milk)
3 Tbsp butter, melted (or canola oil)
2 eggs, beaten (or 6 Tbsp. water and 2 Tbsp. ground flax seed)
1/2 tsp. vanilla

Pancakes on the griddle

Instructions: Combine the first four ingredients in a large mixing bowl and give it a few whisks. Crack the eggs into a separate bowl and whisk them until they are well beaten. Add the soy milk, butter, and vanilla to the eggs and whisk again.

Pour the wet ingredients into the dry ingredients and stir until the ingredients are combined. (You can abandon the whisk at this point and grab a wooden spoon.) Stir the batter until all of the flour is mixed in. This should just take a few seconds – there will still be lumps in the batter and that is okay. Put the batter aside while you heat up the griddle.

Put a teaspoon of butter on your griddle or non-stick skillet and heat on medium. Once the butter has melted, use your spatula to spread the butter over the entire surface of the skillet. This is going to keep the pancakes from sticking.

Using a 1/4 c. measuring cup, dip the batter out of the bowl and pour onto your skillet. I can generally fit three pancakes on my skillet at once. Let the pancakes cook and do not touch them until you see bubbles popping in the middle of the pancake like this:

Flip the pancakes

Now, flip the pancakes immediately. They will only cook for a minute or two on the second side, and you can use your spatula to peek and see if they are as brown as you want them. Once they are, take them off the griddle and slip them into a plate that is warming in a 200 degree oven. Put some more butter on your skillet and do it again.

Adding the melted butter to the other ingredients can be a bit tricky. If the butter is too hot, then it may cook the eggs. If the milk and eggs are super cold, then the butter may re-solidify once you add it in. The solution is to have all of your ingredients at room temperature. However, this is not always convenient, so I sometimes substitute canola oil for the butter just to make my life a little easier.

If the pancakes are turning out darker than you like, or if the butter in the skillet is turning brown, turn the heat down. I usually have to turn my skillet down to medium low after the first batch. You may even need to take the skillet off of the heating element for a few minutes to let the skillet cool down. Don’t worry, you’ll soon get a feel for it.
On the other hand, if you’re not sure that the pancakes are done, just use the corner of your spatula to make a small slice in the middle of the pancake. Press down on the pancake and if you see oozing batter keep cooking.

If you’re having trouble with the pancakes sticking to the skillet add more butter or try another skillet. I use a Lodge Logic Cast Iron Griddle to cook pancakes. I have used non-stick surfaces and cast-iron surfaces and my pancakes always turn out better on a well-seasoned cast-iron skillet. This may just be a personal preference, but if you’re not having any luck with non-stick, try a cast-iron griddle.

If the pancakes fall apart when you flip them, then you’re either flipping them too soon, or you need a bigger spatula. Ideally, the spatula should be wider than the pancakes. Here is a list of pancake spatulas from Amazon to give you an idea of what I’m talking about. I haven’t tried any of these, and therefore cannot recommend one, but it should give you a general idea.