Is It Worth It?

  Two blog posts in one night!  Apparently, I'm wordy this evening.  A few months ago...yes, months, I'm a lot behind on updates....we received some lab results for B.  One for an Organic Acids Test and the other, an ELISA food panel.

The OAT looks at intestinal yeast and bacteria.  The good bugs and the bad bugs.  B's came back looking very, very good for the first time ever.  This means healing.  This is big.  Dr. B said they were the best labs he'd seen all week, perhaps even all month.  Sometimes, I know people wonder if all this hard work is worth it.  The thought has crossed my mind on more than 145 occasions.  But the proof is in the labs.

For further proof, his ELISA food panel showed the healing that has taken place.  He lost many of his IgG intolerances.  Foods that once showed up as severe culprits (level 3) are now level ones, meaning we still have to be cautious but can rotate those foods.  B can now eat beef (grass fed and organic), coconut, gluten free oats, safflower oil, watermelon, peas, and lobster.  Not that we'll be taking him out for lobster any time soon. :)  There are a few more that I can't think of off the top of my head.  The addition of coconut, beef, and oats have really opened the door for us.  I don't feel like he's deprived of much and I can replicate most recipes with a few tweaks.  In fact, I'm having more stress over my IgE tomato allergy than I am over B's diet.  Oh, and the best part, we've been able to take him to some restaurants that cater to gluten free.  Cheeseburger In Paradise is his new favorite.  Partly because he loves french fries and mostly because it has a big revolving door that he loves go round and round and round and round  walk through.

The diet and hard work have been worth it.  Every hour spent in the kitchen, every tear, every stress, every critical comment, every dollar has led to the healing that is taking place in B.

I thank you so much for praying for B....more than you will ever know.  Please keep up the prayers.  We are seeing some very good things lately.  Less tics at the top of our list.  Less tics mean less brain inflammation.  Awesome.  In Florida, they were almost nonexistent.  They  are more prevalent now that we are back home.  It makes me wonder if there is something in our environment that is contributing.  Any PANDAS parents feel free to make suggestions.  We are stumped.  Still, he's better than he's been all year.  I can't tell you how much stress that relieves in all of us.  His urinary issues seem to be better.  He's not scared to be outside because he sees a bug (our big issue this summer).  In fact, he has a new fascination with bugs.  Just today, he called me outside to watch a spider spin a web, look at a busy "family of bugs" and asked me to identify a  bug laying on the sidewalk.  His reading is taking off, his focus on schoolwork has improved, and he's less stimmy. We are so excited about his progress.

The foods B eats are healing, made from scratch, whole foods.  It's kind of ironic that people point out how sad it is that he can't have 'insert food here.'  When, in fact, he is blessed...our whole family is, to have an abundance of foods that nourish his body.  His labs reflect that and so does his sweet, happy face.

GFCF Creamy Quinoa and Bacon Chowder

1 cup quinoa
4 cups broth (any broth...we used goat and buffalo.  Chicken or beef would work as well.  Make your own!  It's good for you!)
1/4 chopped onion

2 diced carrots

1/3 c dairy free margarine (we used soy free Earth Balance.  I hate that it contains canola.  Canola and soy are evil.  If you are lucky enough to be able to have real butter, use it!)

1 lb. of turkey bacon, cut into pieces.

Season salt to taste (I think I used about 3 tsp.  This is a good recipe to use to make sure it's gluten free.)
1 cup unsweetened coconut milk or dairy free milk of your choice (Again, you can use real, whole milk if you are lucky.  Go for raw.  It's good for you!)

1/4 cup dry sherry 

1/2 cup sorghum flour or other bland gf flour
Cracked pepper to taste


If I were a real recipe writer, those ingredients would be listed in order.  However, since I am extremely abstract/random, they are listed in the order my brain recalled them. :)

1. Cook the quinoa according to package directions.  Set aside.

2. Saute the onion and carrot in the dairy free margarine until the onion is soft.  Pretend it's real butter.  You will feel better.

3. Remove from heat and stir in the flour.

4. Slowly add the flour while continuously stirring.

5. Bring the mixture to a boil for approx 5 minutes....or the time it takes you to vacuum the living room.

6. Add the turkey bacon and seasoned salt.  Simmer until bacon is cooked through.

7. Remove from heat.  Then stir in coconut milk, sherry, and cracked pepper.

8. Serve.  Listen to the wee ones tell you how much they hate soup and refuse to try it.  Warn them that they might have to go to bed hungry.  Watch their faces change as they decide the soup is good.  At least the child who loves food thinks it's good.  The child who would be perfectly happy living on a deserted island without food will at least eat it....slowly.  The adults will have seconds because it's been so long since a gluten and dairy free food tasted like real honest to goodness home cooking.  You may finish a child's bowl...sneakily.  

Waves

Exhausted.  Happy. Full of cherished memories.

We just returned from a much needed vacation.  It was one of those vacations where you wish you could stay for weeks on end.  There is one memory I hope I will always hold in my heart and my mind.

Jilly, standing with bare little toes in the ocean for the first time.  She watched a big (to her) wave rolling in.  Anticipation filled her face.  For a moment, I could see she was contemplating backing up, but instead, she held her arms out, splayed her fingers and braced herself for the wave.  She lit up with gleeful anticipation.  Wild giggles escaped her lips as the wave came closer.  Her whole little body shook with laughter as the cold wave splashed her legs.  She repeated this again and again.

I want to be like Jilly.  Facing life with laughter, enjoying the anticipation of what God has in store for us.  These three years, I have been fearful, anxious, stressed out.  As if wading into the ocean, I became weak, letting the waves knock me down, only to get up and get knocked down again.  I'm done with it.  That's not to say I won't get caught off guard and fall once in a while.  But I choose to face life with joy.

God is in control.  He is.  I can cherish every moment with my family.  I can find joy without letting PANDAS/controversy/what other people think of us/worry about the future/worry about all the world's children - overshadow every joyful moment.  This week has shown me that.  What a timely blessing it has been.

A few highlights from our vacation:

Erik's mom traveled with us.  I can't even begin to tell you how special that made our trip.  We are so very blessed.

B sang karaoke!  Shy little B.  Twice!  Can you say milestone?  Once was even a solo!

Jilly sang karaoke...alot....she dominated the mic. :)  Somebody even asked her if she wouldn't mind singing Happy Birthday to their son.  

At Disney Studios, there is a giant "spider web" in the Honey I Shrunk the Kids park.  For the first time, B went in it again and again.  He was not scared of how high it was!  This from a little guy who usually will not climb to the high part of McDonald's play structures.  I think he is conquering his fear of heights.

B came down with a fever one of the days and his tics did not increase.  In fact, he has been mostly symptom free for the entire week.  A few facial tics and head rolls....but very infrequent.  This is the best he has been all year.  All year!

B was able to eat in a restaurant 3 times!  Our horizons are expanding.

Jilly kept us laughing the entire trip.  Seriously.  I don't know where she gets her sense of humor, but she had us in stitches.

Erik was in control and kept his cool through all the vacation stresses.  He is a master vacation planner and we all reaped the benefits.  It was so much fun!

It's easy to forget the worries of life on vacation, but coming back home is a little more challenging.  For now, I've deactivated my Facebook account to focus on what brings me joy.  Two sweet little kiddos and their amazing Daddy.  Also, to spend more time in prayer and study.  I'm ashamed to admit, I let myself get so wrapped up in stress and worry, that I've neglected to spend time with my Heavenly Father who...well...has blessed us, helped us, provided for us, cared for us, and loves us.  

 I may not be as brave as little Jilly, but I'm going to stand tall, brace myself with prayer, and find joy in the waves that come rolling in.