On the Road Again

I take Grayson to see a specialist tomorrow at the Diagnostic Clinic at Children's Hospital. It was recommended that we take Gray to see this "jack of all trades" about a year and half ago by our ENT and then confirmed by the GI specialist. The collective reasoning was to see if there was an underlining diagnosis that would explain all the many health problems he has, something like a chromosomal thing.

At the time, Brian and I decided not to take him. We had just finished 6 months of various exams and tests that were hard on Gray (and me) and very expensive. All coming out normal. At the time, we did not feel we were getting anywhere on the traditional medical road so that was when we decided to put all our efforts into nutrition and diet changes.

We have been on the GAPS protocol for a year now (I plan to write a post on reflections of this year soon). Grayson has greatly improved but still experiences many of the same symptoms that we have no explanation for. A few weeks ago, he started a new (probably unrelated) symptom of frequent urination. REALLY frequent! Our doctor decided to test him for diabetes. After a very, very long week of waiting for test results, we found out the tests came back negative.

I'm so thankful for those results and I'm not too worried about the high amounts of urination. I do wonder about God's sense of humor sometimes. I have said for a while now that the majority of my work and chaos of daily life revolves mostly around bodily fluids and that my life would seem much calmer if everyone could keep their fluids inside their body or in the appropriate waste receptacle. At the season of my life when I think I might be able to potty train my youngest and burn the diaper champ, we now are buying more (bigger) diapers and the bodily fluids have increased! Ha, ha...

The week of not knowing was very difficult. I just hate not knowing what is wrong with my babies! I pray a lot for wisdom and guidance. Everyone has an idea, a pill, a method, a test, a treatment. There are so many options, all of which are expensive and may lead you to a dead end. We've been on so many roads and I'm not sure sometimes if we've even moved from where we've started. How do I know when to try a new road, to persevere down the one we're on, or if I'm even following all the directions?

All of this to say: I'm going down this medical road...again...for a while. I'm sure this doc will order many tests, which, because of our sucky insurance, will cost us greatly and may not give us any answers. He may diagnose him with something that makes no difference to his treatment or how we love him. He may also provide a piece to the puzzle. He may be able to tell me one small instruction. I've decided either way, its worth a journey down this road.

What I feel like God has pressed on my heart this past two weeks is that it is good and right and part of how he made me to fight for my kids. I feel crazy sometimes, and sometimes I am. But other times I am deeply in love with a God who is deeply in love with me and my kids. And when I remember how deeply he loves them I remember that if I never have answers I can still find rest while continuing on the road.

Here is a summary of Grayson's road that I had to type up for the specialist appointment tomorrow:

Birth:

• low body temperature, taken to special care nursery in warmer, temperature did not change, taken to PICU temp raised (all lasting about 12-16 hours, formula given in PICU)
• cried the most of the hospital stay. Difficulty sleeping even when held. Difficulty nursing
• Nursing at home, continued to have sleeping difficulties. Cried at all times of day and at all times of being awake. Could not sleep for more than 10-15 minutes without waking up with a piercing cry and body wincing. Appeared to be in pain most of the time.

Infancy

• Started Prevacid, made little change in temperament
• Eliminated Dairy in mothers diet which helped some
• Mom did a elimination diet (Dr. Sears) for 2 weeks
• Challenged dairy with noticeable negative reaction
• Colic type behavior continued until 4 months then much better
• Continued to have reflux “burps” with the sound of food coming up and going back down, frequent hiccups
• Soy and Dairy avoided by mom
• Ear infections started around 4 months and were continuous (around 6 in 4 months)
• High amounts of drooling
• Frequent illnesses
• Developmental milestones met WNL with noted Hypotonia

December -January 08 (9 months)

• Tube surgery after multiple ear infections
• Mother became pregnant which eliminated breast milk
• Started on predigested dairy formula…eczema, increase in reflux burps and diarrhea started
• Switched to soy formula and seemed to do great with formed bowel movements
• Continued to have large amounts of drool, open mouth breathing and gagging with solid food (not initial pureed food but later chewable foods)

March 08 (11 months)

• Frequent diarrhea returns (10-12 large, loose or mushy stools a day with a very foul odor) Stools often not held by the diaper due to consistency and/or volume. Food particles and mucus in stool
• Continued to have multiple ear infections after tube surgery
• Frequent illnesses
• Continued high amounts of drool and open mouth breathing

June 08 (14 months)

• Fitted by Physical Therapist at St. John’s hospital for orthodics due to hypotonia and late stage walking
• Switched to rice milk at a year
• IgA blood and skin testing done at SL Children’s Hospital-negative results
• Celiac blood test-negative
• IgG blood testing with following results:
• 3+ reaction to garlic
• 2+ reaction to peanut
• 2+ reaction to soy
• 1+ reaction to rice
• Very Low reaction to almond, cane sugar, cow’s milk, goat’s milk, lentil, pineapple, tuna, beef, cheddar cheese, egg white, grape, oat, sweet potato, turkey, buckwheat, cod, egg yolk, grapefruit, orange, sesame, zucchini, cabbage, cottage cheese, gluten, lamb, pea, string bean
• Attempted cow’s milk with strong negative reaction (intense stomach pains and listlessness).
• Stools remain same (10-12 large, loose, food and mucous), reflux burps continue, drooling continues, gagging with food continues, eczema continues

August 08 (16 months)

• Dietician consultation. Barb Lindeman advises to stay away from 3+ and 2+ foods but not to try to avoid 1+ or Very Low reaction foods. Increase fat, Carbohydrates, Vitamin D, and calcium
• Gastroenterologist visit. Dr. Elizabeth Utterson orders Upper GI and small bowel follow through—done at SLCH—results normal
• Start probiotic
• Reflux burps improve
• Diarrhea decreases in frequency 2-4/day. Not as loose.

December 08

• Digestive Stool Analysis done-increased cholesterol in stool, no Lactobacilli noted

January 09

• Soft Neck Tissue Xray at St. John’s notes adenoid enlargement

March 09

• Adenoid and Tonsils removed
• Drooling and open mouth breathing improve
• Stools continue at 2-3/day large, mushy, food and mucous in stool
• Continues to need orthodics due to hypotonia
• Congestion continues
• Eczema continues

September 09

• Begin strict diet with elimination of sugar, grains, dairy, soy. Diet high in meats, vegetables and good fats.
• Increase EFAs and add cultured vegetables and digestive enzymes
• Skin turns orange in color for months
• Catches a virus that caused vomiting and resulting dehydration-hospitalized for 3 days because he continued to be listless and often unresponsive. White blood cell count high enough to cause concern. Discharged when his count lowered and he would eat a couple bites of food.

April 10

• Stools start to improve. Move to 1-2/day. Begin to see some formed stool with intermittent soft/mushy and intermittent diarrhea. Continue to see undigested food and mucous. Stool floats and is oily and dark in color.
• Eczema eliminated

May 10

• Anitbiotic started due to ear infection
• Stools improve greatly. Start to see formed stools the majority of the time.

October 10

• Begin urinating with high frequency (4-8 times an hour) with increase in thirst
• Blood test for diabetes-negative
• Stool continues to be soft, mush with intermittent formed stools. Undigested food continues to be seen in stool at much lesser degree and not as often. Mucous noted occasionally when stool is looser and more foul smelling. Occasionally looses stool when passing gas or throughout the day.
• Distended belly gets larger through the day.
• Has a large appetite and can be insatiable even after large amounts of nutrient dense food.

Apple Pie

I have been avoiding cooking for a while now. I cook what I have to to get us by but I have been making the same few meals and have not baked anything for the kids. ("not cooking" is a very relative term...I use it to compare to the 2-6 hours a day I was spending). Thankfully I have an incredible church community that has rallied around our family to get us through this GAPS protocol. We have one more year to go.

I found a new blog that has inspired me to get back into cooking more and providing more healthy variety for the kids. Comfybelly.com She follows the SCD diet which is very similar to the GAPS protocol. Almost all her recipes are make with almond flour. I learned from her today that there is a difference in almond flours. I have been using Trader Joe's Almond Meal which is much cheaper then the Bob's Red Mill that Whole Foods carries. She recommends baking with blanched almond flour because the finer texture allows for more rise and a fluffier texture. She give many recommendations for where to buy more economical almond flour. I just bought 5lbs at $6 a pound at honeyvillegrain.com. Much cheeper than my choice at Whole Foods but still more than my current TJ's brand. Its worth it to me right now as I am hoping to make a baked good Tyler is excited about.

So today I made my first apple pie...ever. I used my Trader Joe's Almond meal and it worked fine. I'm excited to try it with the blanched almond flour to see if it makes a difference. We ate it for dessert tonight and even Brian loved it. (Annabelle had just the filling to avoid the eggs in the crust). I followed the recipe from Comfybelly. I used clarified butter instead of butter to make it dairy free. I also forgot to peel the apples. When I realized it I decided just leave the peels. That is the only part of the pie we didn't like. This may be obvious to everyone, (but since I have such little experience with cooking it was not to me) you really need to peel the apples.

To anyone following the GAPS protocol or suffering from any Inflammatory Bowel Disease, you will find Comfybelly a gold mine. For everyone else, I would encourage you to consider trying out some almond flour. Its easy to digest, lowers cholesterol, provides more vitamins and minerals than wheat flour, is high in protein, and a good source of fiber. The almond meal from Trader Joe's is very economical and states on the package you can substitute it for up to 50% of all-purpose flour in any recipe.

Happy Alternative Baking!

Morning Smoothie

My oldest started kindergarten last week so we have been in a big state of transition. Our diet has needed to adjust as well. Tyler's school serves breakfast so every morning I send in 2 snacks, a breakfast, and a lunch. I'm hoping to post soon some of the fun lunches and lunch systems I've found as I've been preparing for the last month.

Anyway, I've decided to start doing smoothies for breakfast and then I'll send something for his breakfast to school. I think it will make our morning go faster than cooking a big breakfast and then I'll know he'll get a large serving of vegetables.

I was inspired by this article from the Body Ecology Diet website on healthy breakfast ideas. You'll find more recipes there for more smoothies and other breakfasts.

Here is the smoothie we had this morning (it was a hit):

GREEN SMOOTHIE

Juice made from 4-5 carrots and 2 celery stalks run through the juicer

1 medium zucchini

2 handfuls of raw spinach

1 green apple

1 cup of frozen broccoli

3 Tbsp of nut/seed oil blend

1/2-1/4 cup of Coconut Milk Kiefer

Next time I think I'll add some liquid from our cultured vegetables to add some probiotics.

Quick, easy lunch

I seem to always forget about this easy option for lunch and when I remember its like a light beaming through the dark clouds. Do you have those clouds? The clouds of: I forgot to plan for something, there is nothing in the fridge, and I don't feel like cooking.

It only requires 2 ingredients and I usually have them in the freezer. It takes less than 10 minutes. It is very nutritious and healing for the tummy and builds the immune system. Are you dying to know? Its, Pea Soup. Kind of a let down after all that build-up, isn't it? You aren't going to win many friends by inviting them over for "Pea Soup." But, if you can get over the name, the green color, and the fact that its probably the top meal served at nursing homes, I think you'll love it as much as we do. Here is the recipe:

Pea Soup
Ingredients:
One bag of frozen green peas
Chicken Stock
Salt

Method:
I make ours in the VitaMix so you if you do not have one you'll have to adjust. First I dump the entire bag of peas into the containter. (You can reserve some to put in after the soup is done for garnish). Then I add enough chicken stock to meet the top of the peas. (This is usually about 3 cups). I add about 1TBsp of sea salt and blend. I blend for about 5 minutes until hot. That's it!

As I am typing my kids have asked for more soup 4 times.

Yoda Bars

My cousin Laura has been making these yummy bars for us for a while. I originally found the recipe at the blog Thinking Outside the Box.

She calls her granola-type bar: Walnut, Coconut & Cinnamon Bars. We have termed them Yoda bars because Laura served them as such at her son's Star Wars themed 5th birthday party. My kids love them, they are freezable, portable and just delicious. We have a hard time keeping them around. Here is the recipe (if you want to see step-by-step photos go here:

INGREDIENTS:

• 1 & ½ cups of dates

• 1 cup of walnuts

• 2/3 cup of desiccated coconut

• ½ tsp cinnamon

METHOD:

Soak the walnuts for several hours and dehydrate until dry and ‘crispy’ (about 24 hours).

Place the dates in a food processor and work until they are completely mashed and form a ball. Place into a mixing bowl. Next pulse the walnuts and coconut in the food processor until they become pretty fine but not a flour. Add this to the mixing bowl together with the cinnamon.

I do this in the VitaMix. I do the walnuts and coconut first and do not rinse. The nut powder helps the dates not stick so much. Then, cut up dates first and put in 2-3 at a time. Run in the dry container if you have one at speed 7.

Working with your hands knead the ingredients together well. Then divide the mixture into six equal sized balls.

Mould each ball into the shape of a bar with with your hands. Then using a piece of non-stick paper on a flat surface press the bar against the surface on each of its edges to form a fabulous firm bar shape!

Repeat with each ball of mixture.

Wrap the bar in a piece of non-stick or greaseproof paper and seal with a little tape. Refrigerate. If freezing, put in freezable bag.

The recipe makes 6 bars. I have made another two varieties with pecans or brazil nuts instead of walnuts.

GAPS update and our little adaptations

I know it has been forever since I've last posted. I've noticed that is a common theme among GAPS bloggers. When I visit another GAPS blog and see that they haven't posted in a very long time I feel an instant connection to them. I am pretty sure I know what they are going through. Following GAPS does not permit you much time for anything else. So hats off to you GAPS bloggers that manage to blog regularly and follow the protocol...you are amazing! For the rest of you: hang in there, we'll make it! If you are anything like me, it is also hard to blog when you are not feeling "rah, rah, rah" about the protocol. So, if you are following my blog and I haven't written in a while it is probably an indication that I am struggling with being fully on board with this crazy thing. I am constantly re-evaluating this approach and its practicality in our family.

We are beginning our 11th month on GAPS. I should clarify that the kids are the only ones that have been consistently on the protocol for the entire time. I have decided that I can not stick so strictly to it at this time in my life. It is too hard to plan for my meals and theirs. I am allowing myself freedom but I am also trying to eat as best as I can.

Honestly...The trying started yesterday. For the 2 months prior to yesterday (the 2 months I was not blogging), I have been eating everything in site. Needless to say, I don't feel the greatest.

So, here is to a new start at a road of moderation for me. For the kids, things are going great! Tyler hardly ever shows signs of hyperactivity, impulsivity, high irritability, sensory defensiveness, rigidity, etc (at least not more than most 6 year olds). All of their stools have normalized for the majority of the time. They all still have very distended bellies after meals and there are still days when diarrhea strikes and because I don't take records, I really don't know why. While many people that follow the GAPS protocol take data religiously, I have come to terms with the fact that that will not work for me. I can not do that, and I am okay with not doing this protocol perfectly. For me, if I stress out about doing it perfectly it is too overwhelming to do at all.

So, for those GAPS purists that will be aghast at my following list of adaptations: close your eyes. For anyone else following GAPS that is overwhelmed or on the verge of quitting, here are some of the adaptations we make:
-Applegate Farms Organic Chicken Hot Dogs (we eat at least once a week now)
-Trader Joes Raw Almond Butter instead of making my own
-Trader Joes Almond Meal instead of grinding my own almond flour
-Whole Foods Brand all fruit jelly
-canned coconut milk with guar gum (guar gum is a no-no on the protocol)
-baking special occasion treats with baking soda and/or baking powder
-baking special occasion treats with organic cocoa
-Stevia
-Erythritol
-commercially available dried fruit and fruit leathers with no sugar
-most of our vegetables are not organic (we can't afford it otherwise)
-Spectrum Canola Oil Mayo

That is all I can think of now; I'm sure there are more. Its good to be back blogging again and hopefully I will be a little more regular. I have lots of new recipes to share.



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REAL Pancakes!

It's been a while since I've done any baking. Mostly because its a lot of work and the kids will gobble up 30 minutes of work in about 3 minutes. I am also really limited in recipes as we can not tolerate any sweetener, even honey. Also, about half of the new recipes I try end up failing. It would help if I was a better cook. I don't have that natural skill..maybe someday.

Well, I was motivated to get some freezable snacks for our vacation in a couple of months. Even though its about 90 degrees in my kitchen today, I decided to do a mass baking day. It was a successful cooking day.

Tyler helped (which means he mostly licked all the spoons and bowls) me make muffins and pancakes. We tried a couple of recipes and the last one we tried was a hit! "These taste like REAL pancakes," Tyler yelled after he tried one. They really do. We made them with sunflower seeds which is the first time we've tried them on the GAPS diet. So, the hope will be that our tummies can handle butter made from sunflower seeds and then these can become a staple in our house.

Here is the recipe:
BANANA PEANUT BUTTER PANCAKES
from Pecan Bread

1 ripe banana
1/4 cup peanut butter (we used Sunflower Seed butter) (see below for how I made the butter)
2 eggs
1/2 teaspoon baking soda (not GAPS legal so we left out)

Mix all ingredients with a mixer. Spoon into hot oiled (coconut oil) skillet and brown on both sides

Tip: Small pancakes are easier to turn.

How to make sunflower butter
Sprout seeds first to nuetralize phytic acid which inhibits absorption of minerals and neutralizes enzyme inhibitors which can make seeds difficult to digest.
Fill a mason jar 1/3 full with raw, hulled sunflower seeds. Add filtered water to the top of the jar and screw on the top with a screen insert. Allow the seeds to soak overnight, for one night only, and pour off the water. Rinse the seeds well-you can do this without removing the top. Invert the jar and let it sit at an angle so it can drain, and to allow air to circulate. The seeds should be rinsed 2 times per day. Sprouts are ready in 12-18 hours, when the sprout is just barely showing.

Rinse the seeds again and drain before putting into a food processor or blender. I used my VitaMix which is my most favorite thing in my kitchen (thanks mom and dad!). Blend into a butter.