Being instead of doing

So the visit this week with the specialist was not what I expected. It reminded me why we decided to stop going down the traditional medical road. What the doctor said was, in a sense, what I wanted to hear...I do not need to worry about Grayson's diarrhea, I don't need to worry about his huge bloated belly, I don't need to worry about undigested food in his BMs, and I should feed him everything. The problem is he said this without putting a hand on Grayson, not looking at him for more than 2 seconds, not letting me finish a sentence, not reading Gray's medical history, and telling me that he will have Irritable Bowel Syndrome his whole life. He rolled his eyes at the idea of an imbalance in the gut flora theory. He said that what we eat makes no difference in our digestive system. He said I myself do not have lactose intolerance because I am of German heritage. There were many gross generalizations made and seemingly unfounded conclusions.

But I don't want to discount that he is a well respected doctor and at 78 years old, has to have much wisdom. He said that Gray does not have any of "their diseases." I believe that, and I'm thankful we went to see him to hear that and I can now remove that nagging thought in the back of my head that he has some chromosomal disorder going on. Going through Gray's medical history was helpful for me to realize how many things have improved.

He doesn't have a disease but is he in optimal health? I don't know. When you go out of the traditional medical model there is much talk about optimal health. That is the driving force behind most diet and nutrition gurus. There is even a sense that if you do everything right (i.e. perfect diet, correct supplements, all toxic avoidance) you can have perfect health. It can be a crazy trap for someone like me who wants to do everything right. I have had to step back many times and remind myself that we are in a fallen world. Things in this world are broken. Many things are beautiful but nothing is perfect. We have the promise that God will restore the world and our bodies back to perfection. But its a promise of things to come, not what we will experience on this earth.

My kids are not perfect. I can not make them perfect. I can not be the perfect mother. There is a not a perfect discipline tactic that if I follow perfectly will produce well behaved children. There is a not a perfect set of activities that if I complete in a week will make my children smart. There is not a perfect way to teach my children about the Bible or memorize versus that will ensure they feel loved by God and love others. AND...there is not a perfect diet or program or medicine that will ensure my children never get sick or never experience pain.

When I got home from the doctor's visit, I had a wonderful talk with Brian. It was mostly about the things I've just been talking about. I realize there is a part of my heart that is seeking to control things I can't control because it gives me a sense of security. But it is a false sense of security. I am going to drive myself crazy and I'm going to miss out on enjoying these years with my kids if I try to find my security in "fixing" them.

Yet, I am their mom, and I can't ignore issues if they are there. Balance. That is what I am trying to find. How to move forward when I think I need to to care for them, while at the same time resting in knowing that they are more than cared for by God.

Being instead of doing.

I don't have a master plan for where to go from here and I like that. We are already at the stage in our diet when we can start to add in some more foods so we'll slowly start to work our way into more and more variety. For the most part, my kids are doing great and I am going to choose to focus on their awesomeness. I am going to drink more water during the day...not because I am "supposed to" but because it is relaxing and it makes me slow down. I am going to sit still more. I am going to try to find a hobby. I am going to delete all 1200 unread emails in my inbox and not worry about trying to get to them all. I am going to try to think about just today. I am going to be a mom to my babies. I am going to enjoy my husband. I am going to rest.

We have a God who offers to take our burdens, I might as well take advantage of that.

"The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is thy faithfulness" Lamentations 3:22-23

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!