The Kindness of a Stranger

It's sunny.  It's warm.  Mickey Mouse is everywhere.  We are on vacation and having a blast!  We spent one day at Hollywood Studios and one exhausting fun filled day at Magic Kingdom.  Tomorrow we will revisit Magic Kingdom.  Jilly will be happy.  Today, we relaxed at the resort and Jilly could be overheard saying, "I want my Country Bears.  I want my teacups."  In her sleep, she sat up and said, "I see Mickey Mouse!  I see Daisy!  I see Goofy!  I see Monsters, Inc.!  I see Handy Bandy (Manny)!  I see Buzz Lightyear!"  Then she promptly drifted back to sleep.  B absolutely loved the Buzz Lightyear ride.  He rode it at least 5 times.  His other favorites were the Flying Dumbo ride and the Spinning Teacups.  It's hard to believe this is the same little boy that last year couldn't swing without freaking out.  He's come a long way!

We're also on vacation from the rotation diet.  He's  not eating anything he's allergic to, but he gets to choose his snacks and meals.  And he's eating...a lot!  I think we'll stick with the rotation when we get back home, but have rotation vacations once in a great while.  I'm hoping he doesn't develop new allergies because of this, but I think for the sake of our (his and mine) sanity, this is greatly needed.

Have you ever met a person who goes above and beyond to help you out?  I'm going to create a blog post soon about these wonderful people in our lives.  For now, I'd like to write about Chef Ray.  A few nights ago, we made reservations to Planet Hollywood.  Erik called the restaurant and told them about B's food allergies on the off chance there might be something on the menu B could eat.  This was kind of a long shot.  Ninety-nine percent of the time we bring B's food to restaurants.  Chef Ray got on the phone and asked for B's allergy list.

The next evening, we arrived at Planet Hollywood.  The kids were grumpy and tired.  A full day of Disney seems to have that effect.  It was very late.  When we were finally seated, Chef Ray came to our table.  He looked B in the eye and said, "What do you like to eat?"  It may sound like an ordinary question, but for B it's not one he hears often.  Silly me, I tried to answer it for him.  "He likes chicken."  Then B said, "Mommy, I don't like chicken."  Chef Ray asked if he liked french fries and B's whole face lit up, "Yeah!  French Fries!"
Then that wonderful chef prepared B a meal of turkey roll ups, fancy sliced strawberries, and french fries from scratch with an oil B could tolerate.  B was ecstatic!  He forgot about being grumpy and tired.  As he ate, he said, "I LOVE this place!  It's my favorite!"  I was so very touched by this man's thoughtfulness.  Although the restaurant was crazy busy, he took the time to make the evening special for B.  His kindness created a memory for my boy that he will not soon forget.

No Cheese....But a Little Whine

We took B to his DAN doctor yesterday.  I was really hoping he would tell us we could start adding some foods back into B's diet.  No such luck.  In fact, when I asked when we could begin this process, he said, "When he is college age."  I guess he's the expert, but part of me wants to get a second opinion.  I didn't intend for this blog to be a whine session, but today I feel discouraged....so I'll allow myself a little self indulgence.  This stinks.  I feel a little better.

B's hair analysis showed high levels of mercury and aluminum.  His tin levels were off the charts.  Where in the world could he be getting so much tin?  Even the Doc. was stumped. 

I came up with a new system for the rotation diet.  I really hope it works!  15 more years of the same food might drive us all crazy.  This system will allow for a variety of recipes.  

B's doctor said we could try palm shortening.  I thought it was off limits because of his coconut allergy.  If he can tolerate it, it will open the door to new wonderful things, like cookies!  Prayers for no reaction to this are greatly needed and appreciated!

The message at church today hit home.  The story was David and Goliath.  Pastor asked, "What do you do when faced with a challenge?  Do you focus on the challenge or do you focus on God?"  Perhaps today I have been focusing on the challenge.  Silly, when my God is so much bigger than this.  I've been staring at Goliath when God is the real giant. 

God at Work!

So, that handy little book for B's diet?  It turned out to be not so useful.  But let me tell you how God had prepared me for this and gave me the equipment to handle it.

Before I knew about B's food allergies, I was on a MOPS internet forum.  There was a woman there who had mentioned her son's multiple food allergies and I thought, "Wow.  I'm so glad we don't have to deal with that!"  Also, in another post, she said she was so excited about a cookbook that made everything easier for her.  I didn't think much of it.

Fast forward to our first allergy testing results.  I was at a loss, but remembered that post.  I sent that lady a message and she told me the name of the book.  The Super Allergy Girl Gluten-Free, Casein-Free, Nut-Free Allergy & Celiac Cookbook by Lisa A. Lundy

I ordered that book right away.  I read up on rotation diets, not knowing B would soon be put on one.  I learned about food families and nutrition.  I poured over that book for hours, no kidding.  Six weeks later when B was put on a rotation diet, I already knew so much.  I took the handy-not-so-handy book from the dietician and revamped the whole thing to fit B's needs.  I never would have been able to do this without the knowledge I gleaned from that Super Allergy book.  I never would have known about that book had God not put that wonderful stranger in my path.  Amazing.  What is even more incredible is the speaker at the Autism One conference is none other than Lisa Lundy! the author of the book.  We had no idea when Erik signed us up.  God at work!

Adjusting

After learning about the 25 food allergies, I had a million different reactions.  The first was confusion.  I could not even comprehend what had just taken place.  I was in a daze.  Next, was anger.  What a quack!  He just wants to sell allergy shots!  He probably didn't read the test right!  B has sensitive skin, of course his skin reacts. My child will be malnourished without these foods!  And finally, resignation.  Well, let's start with dairy and see if it has any effects...it did.

B gave milk up a lot easier than we'd thought he would.  He quickly learned to like soy milk and I even found I could make a really tasty tofu lasagna.  B's tics decreased dramatically.  Next, was wheat.  This was a little harder. Everything has wheat.  We took B to get a full blood panel and had to wait 6 weeks to get the results.  I just knew the blood panel would say B had less allergens than the skin test.  I couldn't wait to get the results!  Then, the appointment we were waiting for had finally arrived.

I stared blankly at the page in the Dr.'s office.  43 allergens.  43 allergens.  43 allergens.  This would not leave my brain.  How could I have been poisoning my boy with every single food I'd been feeding him?  He would cry at the dinner table because he felt bad and I would always say, 'one more bite' or 'eat your peas before you can play'...and it was poisoning him.

This is B's (incomplete) allergy list:  apple, barley, beef!, bran, cashew, cheese, coconut, codfish, crab, gluten(bummer), Honey (okay not an allergen, but not recommended), lamb, lobster, malt, milk, mushroom, mustard, oats, green olives, oranges, peas (favorite), peanuts, pork, rice, rye, safflower, salmon, sesame, shrimp, sole, soy (yep, no more soy milk either), sugar (again not an allergy, but bad for yeast overgrowth), swordfish, tuna, walnut, watermelon (his favorite),wheat, yeast, yogurt.

We got a handy little book that had B's diet all written out for us.  B was put on a rotation diet.  This means the food he eats on one day can not be eaten again for four days along with every food in that food family.

This is what Day 2 of the book looks like:
 Protein: Crayfish   Haddock
Grain: Buckwheat, Tapioca, Hemp
Vegetables: Asparagus, onion, seaweed, pumpkin, cassava, shallot, cucumber, rhubarb, squash, leeks, scallion, zucchini
Fruits: Avocado, mango, pineapple, cantaloupe, melon, pomegranate, caba melon, date, persimmon
Nuts: pine, pistachio, poppy
Spices: bay leaf, cardamom, chives, cinnamon, garlic, ginger, saffron
oils: canola, olive
beverages: cinnamon tea, hemp milk, pineapple juice

Overwhelmed.  I was beyond overwhelmed.  I dreamed of food all that night.  I didn't even know what to give B for breakfast.  I didn't know how I could even fit those foods together to make a meal.  One evening that week, Erik came home from work and I went into our bedroom and I melted down.  I shut the door to our room and didn't come out until the next morning.  God was at work even then.  I'd been having trouble sleeping and was just about to doze off when I bolted upright wide awake with this one almost audible message, "It's just food."  It's so silly that this would bring me so much comfort, but my whole outlook began to change.  The next morning, God gave me this verse:

 "Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous hand. ~ Isaiah 41:10"