I Will Never Stop Praising Him

I've never liked the way it ended, this blog.  It stopped in the middle of the story.  I didn't know if we'd ever reach the end.  I wanted to know, to believe that there was an end.  B told me I should write on his blog again so I can help other kids.  So, here it goes:

Today is Sunday.  A normal Sunday...except it isn't, compared to almost five years of Sundays passed.  B sat in the church service with us.  His body was quiet.  His attention was focused.  I praised God silently as I watched him take communion. It is amazing what God has done for B, for our family in just a year.

Rewind to the night before our first appointment at Dr. Buttar's clinic.  B wanted to try out the huge bathtub in our hotel room.  I helped him get the water just right as he undressed.  Every one of his ribs showed.  His knee joints looked huge on those spindly legs.  He had no muscle tone.  I remember drawing in my breath and trying not to stress out.  Dr. Buttar had to get to the bottom of his inability to gain weight and his propensity to lose weight during every flare.  No matter how much organic, full fat food he ate, nothing would stick.  He was later diagnosed with a metabolic disorder.  Today, he is almost 10 lbs heavier and his muscles are developing.  He looks so much better.  We are getting his metabolic system under control.

As we drove to Dr. Buttar's clinic for B's first in office treatment, I broke down.  There was so much hope riding on this and quite frankly, I was scared.  I held B down for all his vaccines when he was younger.  I can't even drive by the pediatric clinic without my heart beating faster and guilt washing over me.  I try very hard not to relive those days.  The thought of B having an IV treatment terrified me.  I think a good amount of PTSD was involved and I couldn't stop the tears.  My fears were allayed in the months that followed.  Tremendous progress.  Every two months B has a treatment.  We measure his progress through a series of questions that are then translated to a line graph.  The progress we see in him every day does translate well to the graph.  From worry to elation.  His labs are looking great.  He is feeling great.  In fact, he is doing so well and his labs are looking so good, he may only have one treatment left.  We are staring the end of the story in the face.

So what about the food allergies?  Guess who ate real cheese on his pizza last night?  Guess who gets to eat at restaurants without bringing his own 'special' food?  Guess who ate his Valentine's candy this year?  Not the healthiest choice, not an everyday thing, but his body handled it well.  He still reacts to gluten.  Peanuts and cashews are out, of course.  Apples and oranges are still iffy.  But that is only a handful of foods, not 43.

What about all the PANDAS/PANS symptoms?   PANS caused inflammation in B's brain that resulted in symptoms of  autism and Tourettes Syndrome.  Most of those symptoms are completely gone.  The inflammation is under control.  He still has a few minor, residual tics that are mostly apparent to us, his family.  Nothing like the full body and vocal tics that were rapidly progressing before treatment.

A few days before I started this blog (four years ago!), we went back to my home town for a graduation.  B's behavior was erratic.  I could feel the stares of people thinking I couldn't control my child.  We spent the day with extended family.  He ignored them, didn't talk to them, wouldn't hug them.  I wanted so badly for them to look beyond his struggles and see his sweet, tender heart.  That is why I started this blog.  I wanted people to understand him.  Today, if you wait for his reply, you will glimpse that gentle nature.  He is full of hugs for his family.

Dr. Buttar said our next step is focusing on realizing we have a healthy child.  It's hard when you've put so much into healing, when your momentum has been so strong for so long.  B has had a few little flares that have made me doubt.  However, he bounced back to an even better baseline whereas before this treatment, his new baseline got worse with each flare.  Dr. Buttar seems to think that  B's body will take over and know how to keep healing with all his other body systems working well.  I believe him because that is what we are seeing.  The black cloud that has hung over our heads has drifted away, making room for the sun.

I have learned so much from this journey.  Anger, pain, confusion, frustration...they are all part of it.  If you are in the thick of it now, don't feel bad for feeling those things.  However, do not dwell there.  Don't pretend everything is okay, but do not immerse yourself in the sorrow.  I used to visit PANDAS/PANS pages and read with horror about children who lost the ability to speak at the age of 15, children who tried to commit suicide, children who lost the ability to walk, children who had to be admitted into psychiatric facilities.  My mind would drift to the 'what ifs.'  I wish my present self could talk to my past self.  I would look myself in the eyes and say, "They are not your child.  He is in front of you and he needs you to stay positive for him.  It will get better."

Always, I am amazed at God's guidance.  The only way I can describe B's journey is 'full of miracles.'  Every door God opened, every door He closed.  His goodness...  B has been granted a brand new healthy life.  God Bless Dr. Buttar, Nurse Practitioner Jane Garcia, and of course the physician who initially diagnosed and treated him, Dr. Baptist.

I will always thank the Lord.  I will never stop praising Him. -Psalm 34:1

It's Time...

When I started this blog, I was looking down a winding path.  I didn't know what this journey would entail, what it was, or even how to begin.  With each step, I've poured out my heart.  I bared my soul with such vulnerability that I sometimes shook with nerves after I hit 'publish.'  I have learned so much..and shared it.  I have grieved so much...and shared it.  I have felt peace...and shared, joy...and shared, fear...and shared, anger...and shared.  I have been judged and it stung.  I have been encouraged and it felt like a million helium balloons lifting me into the clouds.  We have been prayed for...and you'll never know this side of Heaven how much that has meant to us.

B is getting older now.  So much a mix of little boy and big boy that I get a lump in my throat when I see his features changing.  New, grown up teeth.  Sweet little man ears.  All knees and elbows.  I swell with pride when I see the wonderful person he is now and is growing up to be.  I have no doubt he will touch many lives.  Along with his growing up, comes the release of some of little boy I've been holding onto.  He is becoming a boy with his own ideas, his own set of feelings, and perhaps a need for privacy.

I wonder how many tears of triumph and pain I've poured into this blog?  They must be innumerable.  I've been working on releasing pain and acknowledging blessings.  The blessings are many.  Moving on from this blog is part of that process.  There is so much pain on these pages. \I need to move beyond that pain and rest fully in the assurance that God has this.  He has always had this. We still have a ways to go.  We still struggle.  B could still use a lot of prayer.  But he is flourishing in ways I didn't think possible.  The path still winds and the end is still unseen.  But we are not walking this alone.  Thank you for following us, helping us, loving us, and praying for us.  Thank you, Heavenly Father, for carrying us.  We will make it to the end of this path and what a glorious day that will be!



 

April

  Light it up blue!  Embrace Autism!  Autism Acceptance!  It's April.  Autism Awareness month.  Blue puzzle pieces and happy slogans are all over the internet.  There is nothing wrong with loving our children, accepting our children.  We should love our children.  Embracing and accepting iatrogenic autism, I cannot and will not do.  Ignoring the medical side because *shrug...that's just autism.*  I will not do.  Accepting that 1 in 50 children are diagnosed...and growing!  That, I cannot do.  When autism awareness turns into passive acceptance, we are in trouble.  Today, children will lose their ability to talk.  I'm not celebrating.  Today, children are have nonstop diarrhea.  Not celebrating.  Today, children are self harming.  Not celebrating.  Today, parents are taking their children to the pediatrician to get vaccines on an untested schedule.  Not accepting.  Some of those children will have a seizure and parents will be told, 'that's normal' or 'we must have missed a seizure disorder'  oops.  Some of those children will disconnect and doctors will say 'it's coincidence that it happens around the same time as the vaccines.  No, the seizure had nothing to do with it.'  I will never embrace that.

B's diagnosis is PANDAS.  So why should I be bothered?    If we had taken B to another physician, he would have easily been diagnosed as autistic.  His score on the ATEC was 67.  Last year, we listened to a PANDAS specialist speak.  He said that PANDAS follows a progression PANDAS, then PDD-NOS, then classical autism if it is not addressed.  I believe we were on that track.  PDD-NOS.  At that time, B fit much of that criteria.  Also, B had/has many of the same medical co-morbidities as children diagnosed with ASD.  How can I not believe autism is medical when my son's own medical condition gives him characteristics of autism when he is in a flare?  

I read an article today about autism acceptance.  It seems there is an undercurrent of 'biomedical intervention' equals a 'lack of accepting your child.'  This is where I see the 'Acceptance' movement going. Read through my entire blog from post one to this one and tell me that I am not accepting of my child.  We have poured many prayers and tears into this journey and it is all about helping our child.

We have helped B love swinging again.  We have helped him eat and enjoy food again.  His bath water no longer hurts his skin.  His constipation is gone.  No more random rashes.  He relates to his peers in a way he didn't before we changed his diet.  He is able to receive hugs from family members.  We have eased his hair trigger meltdowns.  He sleeps all night without waking.  He no longer tics until his chin is bleeding.  The tics are not affecting his speech or the way he walks anymore.  His tummy aches are gone.  Loud noises do not make him run, hide, or scream.  He can walk across a parking lot without panic.  Dark circles and sadness are gone from his face.  A few months ago, his ATEC was 28.  From 67 to 28.  This was not about changing my child, it was about helping him feel comfortable in his skin and in his world.  Decreasing the inflammation in his body, so it could function the way it was made to do.   This was about addressing medical concerns in a more natural way.  Finding the root cause and most natural approach before choosing the pharmaceutical route.  The sentiment going around is that helping my child in this way is a selfish choice.

The other night, B wanted to talk about his tics.  They are less frequent now...I may talk about that in another post.  He said, "Mommy, when I would tic, before the tic there would be a pain.  The tic helps the pain go away."  He was very candid in this conversation.  I told him that I knew that treatment is a lot of work and asked if it was too much work.  He said, "Mommy, I'm glad we're doing everything to help me feel better."

This month, I will not be lighting it up blue.  Or embracing autism.  Or accepting autism.  I will praying for our children.  I will be embracing my beautiful child.  I will be accepting his wonderful gifts and helping him develop them further, while still healing his body.  He is not Autism.  He is not PANDAS.  He is B.  And he is wonderful, amazing, beautiful, talented, smart, funny, kind hearted, sensitive, creative, incredible.......  



 

Our Homeschool

I'm often asked what we use for curriculum when we homeschool.  This is what has worked (or hasn't) worked for us this year.



Explode the Code- After purchasing and and ditching two pricey reading programs last year, these  books are what taught B to read.  They made it click for him.  He breezed through book 2 this year and is currently working through book 3.  I love how every lesson slowly builds on the last one until concepts are mastered.  Another perk about the books?  They are very affordable!



Spectrum Spelling- We don't use this book often anymore.  B has learned so much from Explode the Code, it felt like overkill.  We use the spelling book on weeks we do not have a lesson from our Reading book.



Evan-Moor Reading - This book, I bought on a whim when B asked me to.  He really likes it so far.  I like the comprehension activities and phonics/spelling review.  B likes the fact that he gets to draw, cut, and paste for some of the activities.


Bob Books- I really liked these for Kindergarten.  They gave B such confidence!  This year, though, when B went through two sets of books fast, I knew he'd outgrown them.  Now, I have him pick a book from the bookshelf.  We have more books than bookshelves, so there are a lot to choose from!  If it's a difficult book, I'll alternate pages with him.  If the book is at his level, he'll read the whole thing to me.  It's amazing how much just reading aloud has helped his reading skills.



Singapore Math- This program for Kindergarten was wonderful!  It was B's favorite subject.  This year, it's not a match.  The way mental math is taught is abstract to B and honestly, to me too.  B can do math mentally, he just takes a different approach than is used by this system.  It also moves too fast, into higher math without mastery of the basics.  I've had to stop and supplement too often.  I've heard great things from other families, but I think we'll be looking at a different curriculum for next year.  I'm seriously considering
 Math-U-See for my visual learner.



Story of the World- This book is so, so good.  History is by far our favorite subject this year.  The text is so engaging.  We both find ourselves wanting to know more about the people and cultures covered in this book.  This week, we have been learning about Greece.  To supplement, we've also been reading Greek mythology.  B is fascinated.


Character Sketches from the Pages of Scripture, Illustrated in the World of Nature- Erik's cousin recommended this book to us when B was a toddler and Jilly was just a baby.  I'm so glad we ordered it.  It is truly a book we will treasure for years.  It focuses on character traits and then shows how these character traits are displayed in the animal kingdom. It also demonstrates these traits in the Bible.  For instance, this month we have been learning about loyalty.  We learned how bees are loyal to their hive and their queen, geese are loyal to their mates, and what happens when a little bear cub is not loyal to his mother bear.  Also, how Mordechai was loyal to the king...even when it was difficult and what happened when a soldier was not loyal to his commander.  We use this for science, as well. The animal descriptions are very in depth.  The pictures are beautiful.  I find myself growing in faith from this book.

Sight word practice- B has a stack of sight word flashcards.  We review them about 3 times a week.  Every time he gets the word correct, quickly without obviously sounding it out, that word gets a check.  When he gets 3 checks, the word is taken out of the stack and written on his word wall.  He enjoys sight word practice because he's quite good at it.

Math- Flashcards, printables, time tests, and computer games.

Writing- We have a writing corner in front of his word wall.  On it, we have a basket full of different types of writing paper and a notebook of words he needs help spelling.  Topics vary.  Yesterday, he wrote about the snow falling off the roofs of houses and what it was like to walk in the snow.  Writing is his least favorite subject.  One time (before his spelling had taken off), he was a little passive aggressive and wrote, "A long tim ugo, I poct Mommy with a stick."  Complete with illustration!  Sometimes, his writing is sweet...like the Valentine he wrote for his Nana.   He also has a journal for corresponding with Erik or myself.

Science- This year, other than Character Sketches, science is being led by B's interests.  We've learned about space, deserts, snakes, scorpions, bees, insects, bones, the digestive system, the city water system, muscles.....so many things.  We surround him with books, visit the library for more books and documentaries, watch science videos, and explore the great outdoors.  Next year, science may be more focused, but it has been a fun year to watch where B's interests take him.

Homeschool Co-op- This is new for us over the past few months.  B is really enjoying it.  We get together with other homeschool families and classes are offered.  B has dabbled in guitar, origami, science experiments, and had a tea party.  This week, he wants to learn sign language and do some more science experiments.  Fun!

AWANAS-  I can't say enough about this program.  It is the highlight of B's week.  He gets to play games, memorize scripture, learn about God's word, and fellowship with friends.  I am amazed at his biblical knowledge for such a little guy.

Calendar Time- We used to do calendar every day, but now we reserve it for the days Jilly is having school with us.  She attends a preschool a couple days a week. We use calendar time to discuss the weather, add numbers to our number chart,  and count by ones, twos, fives, and tens.  We use it to learn place value, money, days of the week, and months of the year.  When Jilly is with us, we read from a children's Bible.

Literature- Erik and I read to B and Jilly a lot.  This year, we've read Mr. Popper's Penguins, The Boxcar Children, a book about Alladin, Rikki Tikki Tavi, Greek mythology, The Littles, and a few others.  I love those moments of snuggling up and getting lost in a book.

Field Trips- Occasionally, we need a change of scenery and decide to go an adventure.  We've visited the zoo, the nature trail, museums, the Discovery center, and sometimes just the park.  Consider it recess. :)  Homeschooling is portable.  There;s so much to learn from God's creation.  Sometimes it's nice to close the books and experience it.

Leaving Egypt for Good....or How I am like the Israelites

B was talking with me tonight about Moses and the Israelites.  Moses led the Israelites out of Egypt...out of bondage.  First, they were happy and rejoicing.  Then, after a while, when things weren't going the way they wanted, they began to complain and become bitter against Moses and turned their backs on God.  I always thought, wow, after everything God had done for them?  After all they'd seen?  He freed them!  Moses led them.  B said, "The people thought that one with the stick (Moses) was making things worse."  My mind had a hard time wrapping around that.

That is, until I started thinking about B's journey.  I realized I have a lot in common with the grumbling Israelites.  For a while, I had been thinking, what if we never knew about B's allergies?  Wouldn't life be simpler?  Stress free?  Ignorance is bliss.  If I had known Dr. B was going to test B that very first appointment (and known the outcome), would I have gone?  When I see kids that show the telltale signs of food allergy and their parents do not know...is their life better?  More relaxed?

God gave the Israelites manna.  It literally fell from the sky.  They had the assurance that they wouldn't go hungry.  "Who will give us meat to eat?  We remember the fish which we ate freely in Egypt, the cucumbers, the melons, the leeks, the onions, and the garlic; but now our whole being is dried up; there is nothing at all except this manna before our eyes!" (Numbers 11:4-6)

God gave us the tools to heal B.  He gave us the ability to afford the foods that B needs.  He has provided so much and I sound like the Israelites.  "When can we eat like normal people?  I remember the restaurant trips, the pizzas, the birthday cake, the potluck dinners.  Now there is nothing at all except all this organic produce, gluten free grains, and free range buffalo, emu, and elk."  Ha!  When I look at it like that...what a whiner I have been!  God has been so good!

God promised to lead the Israelites to the Promised Land.  They started to doubt, to become blind to God's providence.  All this time God has been healing Bry, I started to doubt, to complain, to focus on how hard the journey is.  I started to become blind to God providence.  He's brought B so far, so far that B's PANDAS is becoming less apparent.  Why was I complaining?  Yes, the journey is tough....but isn't that what makes the destination sweeter?  B was in bondage to his illness, his allergies, his sensitivities, his fear, OCD, tics.  Little by little God has healed these things, is still healing them.  Why in the world would I complain and look longingly back at life before we knew?  Just like the the Israelites looking longingly back at their slavery in Egypt.

I'm looking forward now, and thanking God for the journey.  Thanking Him for guiding us and providing for us.  Thanking Him for loving B and watching over him.  I'm done wallowing.  Done.  God has been so, so good to us.  It's time He is given the glory!

Highschool or Facebook?

She makes me uncomfortable.  I don't need that.  *Unfriend*
Wow.  She really needs to get a grip.  I can't even deal with that kind of crazy.  *Unfriend*

I know she's family, but only distantly, and darn if she doesn't just ruin my rose colored glasses. *Unfriend*

I have a love/hate relationship with Facebook.  On the one hand, I love staying in touch with friends.  Through facebook, I've started a support group for families dealing with food allergies.  The people in the group have been a tremendous help to me.  There are Christian Homeschooling groups, biomed groups, mothering groups.  So much support!  And lets face it, when you are a stay at home, homeschooling mom, your opportunity for socializing with other adults is slim.

Have you ever had one of those awkward phases of life?  Where everything you said and did just didn't fit in?  For me, it was 7th grade till, I don't know...my sophomore year of high school? I still cringe when I think of some of the things I said and did trying to fit in, only to look more out of place trying too hard.  One thing was apparent in that atmosphere.  If you didn't conform, you were not cool.  (Okay, so 'cool' is probably not a word anyone uses anymore, so insert whatever the kids are saying now.)  So, the last three years of high school were spent making poor choices to finally fit in.  Trading what I knew was right for what was not good...but was popular.

I feel like I'm there again, that fork in the road.  But this time, I absolutely cannot trade my values to fit in.  I can't trade our experience for acceptance.  If I am quiet about it, I will be well loved.  If I continue to speak out, I will continue to be judged.  

Here is the truth.  I wish somebody would have been brave enough to speak to me before I had children.  I wish I had known the other side.  I wish people weren't scared to share their experiences.  If nobody talks, nothing changes.

Our world tells me I am selfish because it's my civic duty to protect the greater good.  For those who believe that, I would tell you that it is selfish to believe that you are entitled to the health of my children.  God placed them in my care.  That is not selfish, it is taking care of the children God blessed us with.  

I am still learning.  I am still trying to sort it all out.  If who you see is a 'crazy' mom, then please do us both a favor and click the *unfriend* feature on Facebook.  You don't need my posts to ruin your day and I honestly don't need the judgment.  Just know what you don't see.  The private messages, the children healing because of information other mothers (and fathers) have shared, the friends needing advice...needing support.  You do not see behind the scenes.  You do not hear the stories.  You have not met the children affected.  I have.

Even if my knees are shaking, I'm going to remain the geeky (is that word used anymore?) girl who stands by her convictions.  I believe I'll risk getting kicked off the Friends List.

  

A Little Bit of Happy

Just a quick update before we start school for the day.

1. Bry is gaining weight!  Can I get a Hallelujah? Woot! :)

2. I've realized we've had more good days lately, than bad.  His tics are so much better.  Even when he has a bad day, good days follow quickly after.

3. He is sleeping a lot.  I'm so thankful for homeschooling because today he slept till 10:30.  I've noticed that his sleeping usually correlates with tremendous healing.  I welcome that sleep!

4. B is reading so much now.  Every book he brings to me, he's able to read with some help for the really big words.  When I read to him, he's asking me to point out specific words.  He's reading over my shoulder.  Last night, as I was reading, he said, "Mommy, I found the word 'knocker!'  Um....knocker has a silent 'k.' How awesome that he found that word out of all the words!

And now a little update on Jilly.

1. She's still adorable as ever.  She's telling me her letter sounds and likes to count for me.  She also likes to 'write' books. Today she 'wrote' a musical about fruits and vegetables.  It was a hoot!

2. She's a little mommy and is always playing 'babies.'  Right now, they are lined up in the hallway in cradles, highchairs, strollers, and shopping carts.  She says she's having a yard sale.  Ha!

3. She's having some dental work done next week and will be sedated. :(  I'm not looking forward to it, but it's unavoidable.  We would certainly appreciate prayer that it goes smoothly and that there are no complications.


That's what is going on in our busy life.  I'm so happy with B's healing even in the middle of flu season.  I'm also thankful that the awful flu seems to have skipped over our family.  *knock on wood*  I'm definitely counting our blessings!  It seems the clouds have lifted for now and we are relishing the sunshine.

Midnight Conversations

"Mommy," whispers B, "I can't sleep in my room.  Can I snuggle you?"

It's a regular occurrence at our house.  It's almost midnight and B is wide awake.  He crawls into bed between his Daddy and I.

"Mom, how do they get pictures onto driver's licenses?"

"Well, first, you have to take a drivers test...."

"No, I mean how do the pictures get on the licenses?"

"Mommy, did you know crocodiles can't walk backward?.....I don't get tired like other people....Yawwwn."

"Sure, Bry.  You don't look tired at all."

"Mommy, can you scratch my back?  How do you get to be an astronaut?  Did you know that when a plant loses its color, it's running out of chloro....chlora....."

"Chlorophyll?"

"Yeah, Chlorophyll."

"Mommy, I'm hungry.  Can I have a snack?"

"You may have some almonds or a banana.  Then, you really need to sleep."

"Okay."

"Mommy, I love you to the moon, to all the planets, around the Milky way, to all the stars and back."

"Bry, I love you even more than that."

More than he will ever know....or at least until his own children are kept awake by the wonders of this word.     B's body sometimes has a hard time settling down, especially in a flair.  For the most part we've ditched the melatonin in exchange for midnight heart to hearts.  Why not?  School time is adjustable and these moments will not last forever.  When God led us to homeschool, He knew.  I fought it tooth and nail, hating the thought of letting go those school day dreams I had for him (or were they for me?)  I wasn't making room in my mind for the blessings that were to come.  My heart is full of gratitude.  Tonight I will be thanking my Heavenly Father for His loving guidance and faithfulness.

Hills and Valleys

Ups and downs.  Hills and valleys.  That is the PANDAS journey.

I sometimes find myself caught up in envy.  Yep.  I know it's wrong.  It's a sin.  Is it a sin to want some normalcy for my child?  Is it even envy?  A little.  I covet the little things families take for granted.

When B has a rough day, these little things are magnified.  Today, B is having one of those days.  A new tic. A very noticeable tic.  A constant grunt/hum.  By constant I mean every second until he falls asleep.  I can't imagine how exhausting that must be....and I'm so glad he is educated in an environment where he doesn't feel he has to suppress it.  I think that would be even more exhausting.  When B is affected, I am affected.  That bond between mother and child is a strong one.  Today, I feel like I'm walking around with my nerves on the outside of my body.  Today, PANDAS and food allergies get to me.  Today, I feel like it's taking so much from his childhood.  

Part of me feels bad for even blogging this because I realize it looks like a 'pity us' post.  It's not.  I don't know what it is...It's a yucky feeling that I need to type out because it's unhealthy to hold it in.  It's our reality.  I know there's somebody out there reading this and thinking, "I want a piece of their reality," because what they are facing is so much harder.  And that makes me feel guilty for even complaining.

I want to complain about the friends I've lost when I needed a friend the most....but this has shown me the beauty of the friends who have stayed by my side.  Friends who pray for us, help us, and truly listen to us without casting judgement.  Friends who are willing to, with love, point me in a better direction.

I want to complain about how much I would love to take B to a pizza buffet and let him enjoy every bite...but this journey has introduced us to wonderful, healing nutrition.  It has taught us about the link between autoimmune diseases and diet.  We may be changing our family tree.  Preventing more autoimmune illness by changing the way we eat.

I want to complain about how hard this is, swimming upstream...but this has taught me what it is to truly fight for something. And what it is like to depend on God for strength when I have none.

I want to complain about how unfair this is to B.....that's where I get stuck for moment.  It is unfair.  I would take it away in a heartbeat if I could.  But I can't deny this journey has formed some amazing traits in my little boy. He has tremendous self control, a strong faith, and empathy...a real concern for others.  He takes delight in the small things.  He is appreciative, kind, and respectful.

Today may be a valley.  As I began this post, the hill looked steep, but as I type, I realize I've been climbing the hill.  That's what this post was....an ascension.  God is good, even in the valley.

Peace with PANDAS

The day finally came.  I knew it would eventually.  Now, it's here.  The day B is aware that his tics make him stand out and he feels the need to hide them.

We've had a very good month.  It was one of those, 'so this is what it feels like to not worry about PANDAS' months.  Almost all the symptoms had disappeared.  It was a refreshing break for us, but especially for B.

I knew it wouldn't last forever.  It is cold and flu season, after all.  On Tuesday, his handwriting tanked.  That was our first sign.  It took him f-o-r-e-v-e-r to finish his phonics worksheet and he cried over spelling.  We shut the books and I decided it was a good day to read science and history books together and to have him practice reading aloud to me.  He enjoyed the gorgeous sunshine for the rest of the day.

I'd noticed some very frequent tics, so I asked him this morning, "Bry, I've noticed your PANDAS acting up again.  Are you okay?"  He replied that he was.  Then I asked, "What does it feel like when it acts up?  Does it make you tired?"  He replied that it didn't, but that it's been making him stick his tongue out a lot.  Then he said, "Mommy, when I need to stick my tongue out at Sparks, I go like this."  He stuck his little fact inside the collar of his shirt.  I told him that it was okay if he felt like he needed to do that, but that he shouldn't feel ashamed of his tics.  I asked him if anyone ever points them out or asks him about them.  He said they do not.  I am so thankful for the kind children at our church and in Sparks...and for the leaders who are so encouraging and accommodating!  I told him that if a friend asks him about the tics, he could tell them about PANDAS.  He said he didn't want to.  I told him that's okay.

Usually, when B gets a flair, I am on anxiety overdrive.  I worry endlessly and become emotional at the drop of the hat.  I become fearful as the what ifs repeat themselves like a broken record.  I feel angry at the world.   This time, it is different.  This time, I have peace.  I believe putting this in God's hands, knowing that He is in control, has brought me immeasurable peace.  I do catch my chest tightening a little with the all familiar stress, but it is easily brought back down with reassurance.  God has a plan for B.  Whatever that plan is, PANDAS will not stand in his way...or His way.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

Lately, I've been thinking about this blog and why it was started and maybe how it's veered off course.  I started it, not for attention, but for understanding.  I have seen too many  children unfairly judged, too many parents unfairly judged, by friends and family who do not understand.  I didn't want B or our family to endure that kind of judgement.  I wanted B's tender heart to shine through this blog.  I didn't realize I would turn inward so much and reflect my own heart...even when it's not pretty.  But that is the process, and if it has helped other parents to know those thoughts and feelings are normal, then I am glad.  I really do hope to write more on the amazing-ness (It's my blog, I can create words...right?) of B.  We were truly blessed when God entrusted us with this sweet little boy.

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.

PANDAS...What???

What is it?  Is it real?  How do you know it's not just tourettes?  Isn't there a pill for that?

I've been getting lots of questions lately and comments, articles, advice lately that shows me I've not done  a good job educating our friends and family about PANDAS.  Ideally, I'd have Erik write this.  He's the science guy.  I hope I can explain in a way that makes it easy for others to understand.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections.  In other words, if B is exposed to strep, he creates antibodies that cross the blood brain barrier, interact with neuronal tissue and attack his basal ganglia.  Basal what?  The basal ganglia is the part of the brain that is responsible for voluntary movement and behavior.  In B, it causes tics, sometimes obsessive behavior, and meltdowns over things that would seem 'trivial' to the general population.  We listened to a lecture from a top PANDAS physician who said PANDAS is being changed to PANS.  In PANS, anything that causes inflammation in the body can trigger a flare.  We've found this to be true with B.

How do you know it's not just tourettes?  When B was three, for a few weeks we noticed he was blinking his eyes a lot and started popping his shoulders.  Shortly after that, he became ill with a high fever and lethargy.  As he began to recover from this illness, it was like he changed overnight.  He woke up with frequent and strong tics.  Although sensory issues and regressions in other areas seemed to be happening over time (or at certain points in time), the tics were sudden onset.  We had an anti dnase B test run which showed his strep titers were elevated.  We run this test every 4-6 months to keep them in check.  It is important to rule out PANDAS before accepting a diagnosis and treatment for Tourettes Syndrome.  The medications used for Tourettes actually exacerbate PANDAS.

Is PANDAS real?  There seems to be a controversy in the medical community about this.  However it is recognized by the National Institute of Mental Health.  I can tell you it is very, very real.

Isn't there a pill for that?  In many cases, pills mask symptoms.  If we'd accepted a pill for tics, B's PANDAS would have gotten worse.  He would have been misdiagnosed.  We were determined to get to the bottom of the cause of the tics.  In many cases, PANDAS is treated with long term antibiotics and/or routine IVIG treatments.  For B, long term antibiotic use is a bad idea.  Antibiotic use is hard on the digestive system.  B already has issues with increased intestinal permeability.  His food intolerance list would have grown if we'd gone that route.  Food intolerances lead to more inflammation in the body which leads to greater PANS flares.  It would be never ending.  Instead, we removed offending foods to decrease inflammation, reduced allergen exposure, and he is on a supplement regimen that fights strep, bacteria, inflammation, and viruses.  Also, to fill in the gaps of the nutrition his body has a hard time absorbing.  It's more complicated than all that, but that's the shortened version.


To learn more, please visit the links provided in my previous post or visit the NIMH:  http://intramural.nimh.nih.gov/pdn/web.htm

Support

Support: To hold in position so as to keep from falling, sinking, or slipping.

Falling.
             Sinking.
                          Slipping.

PANDAS is the HARDEST thing we have ever had to go through.

When our medical decisions are questioned...When we are discussed without being present to answer questions...When assumptions are made...support is weakened and so is our strength in fighting this thing.

Trust: Firm reliance on the integrity, ability, or character of a person or thing.

We have sat through readings of B's lab results.  We have read his medical file.  We have read every study/news story/book we can get our hands on concerning PANDAS/PANS.  We have talked to parents of children with PANDAS.  We collaborate with his physicians.  TRUST us enough to know this hard work is necessary and worth it.  Yes, it is hard.  Do you know what is harder?  Raising a child whose PANDAS is not under control.

Triumph: To be victorious or successful; win.

Our chances of triumphing over PANDAS greatly decrease without trust and support.  Please, ask questions.  Please learn about this disorder before forming an opinion of us and/or our medical choices.  B needs our support.  For us to be strong, we need yours.



Learn more by clicking these links:

http://strepmonster.com/Home.html
http://pandasnetwork.org/
http://www.pandasfoundation.org/pandasfoundation/Home.html

To get a bigger picture of what B's lab results show, this graphic and descriptions under it mostly lines up with what we are seeing:
https://www.stopcallingitautism.org/autismimmunedysfunction.html

Prayer Request

Things have been a little upside down lately.  I don't know how to describe it.  Erik and I are both feeling the push to ease up a bit with B.  Decrease supplements and let him try some foods that showed up on his IgG test.  We are awaiting the results of his new food panel.  I really hope he's lost some of those sensitivities.  Reducing supplements has caused a slight regression and more choreiform movements in B.  But, this month has been less stressful for all of us without having to worry about taking them after every meal and in the morning when he wakes up.  With the regression, we realize the supplements do play a role in his healing.  We will slowly be adding them back in.

What we keep coming back to is this:  Where is the line between quality of health and quality of life?  With B, it is a tightrope.  One step in the wrong direction and we either fall on the side of regression or the side of being stressed out nonstop.  In three years, we have yet to find the middle ground.

I'm handing B over to God.  I want Him to lead and we will follow.  We know we will be moving in another direction with his care.  That may mean a new biomedical doctor, or a new method of treatment used in conjunction with the care he receives from Dr. B.  I am so thankful for everything Dr. B has done for our son.  I truly believe in the biomedical approach.  However, at this point, we are not feeling peace about continuing on this path alone.  If he regresses with the removal of supplements, how much healing has taken place?  I want to get his body to the point that it can make or absorb the very things the supplements provide.  Am I being impatient?   Every day B tics, every day he stims, every day he melts down is a day his brain is inflamed.  That scares me.  Is there something Dr. B is missing?  Something an extra pair of eyes will uncover?  B is not gaining weight again.  Every pound he gains, he loses again.  I want this addressed.  Dr. B has brought B into a better place.  For that, I will forever be grateful...but I feel like there's a another step that needs to be taken.

So, if you are reading this, I'm asking that you pray for us.  Pray for God's guidance and for us to be alert to His leading.  Also, that we will have the funds to do whatever needs to be done.  Please pray for B...for healing.  Thank you, friends.

The One Where I Lose My Cool

Yesterday was good.  Tonight, I'm struggling.

It's just hitting me.  The enormity of it all.  All the information to wade through.  All the opinions that seem to clash with each other.  One doc says a million supplements and diet changes.  Others say antibiotics and ibuprofen (that B's system can't tolerate).  Then there's IVIG ($$$)....repeatedly.  Or how about homeopathy.  Have you tried GAPS, or perhaps the low oxalate diet, SCD?  Silver?  Belladonna?

I listen to other PANDAS parents.  Doctors saying they don't believe in PANDAS...but here try this band aid psych med.  GI docs telling parents it must all be in their heads when their children have severe abdominal pain.  Children misdiagnosed as Tourettes and put on medications that exacerbate the PANDAS.

Bladder issues.  Food allergy?  Inflammation?  Information I read today: The basal ganglia controls the internal bladder sphincter.  PANDAS attacks the basal ganglia.  It's the SAME thing that happens to people with Parkinsons.  Wonderful.  Do you know what else is associated with Parkinsons?  Aluminum poisoning.  All I know is that my child was potty trained at 2.  He'll turn 6 on Saturday and he's not anymore.  AND THAT IS NOT OKAY!

And it feels like this world goes on and doesn't care about all these hurting kids.  They are brushed under the rug.  We numb ourselves with pop culture, food, prescription drugs, idiotic right verses left politics.   The apathy is astounding.

 Autism, ADD, ODD, Allergies, Asthma, Juvenile Type 1 diabetes, Juvenile Rheumatoid Arthritis, Eczema, GI issues, PANDAS, Childhood Schizophrenia, Food Allergies.  When did this become the norm?  When did it become okay?

Erik and I were on a radio program and the topic of how to approach all this came up.  My answer was that I'm really nice about it because people won't listen when you're angry.  The truth is, I AM angry.  I'm angry at the medical establishment that turns their back on our children.  At doctors who say "I don't believe it" when they are too proud to admit they don't understand and haven't taken the time to research.  I'm angry at our insurance policy that specifically states that it will not cover PANDAS.  I angry that the CDC recommends an untested vaccine schedule.  I'm angry that drug companies are allowed to pass off "safety tests" of individual vaccines without a true placebo.  I'm angry that this doesn't seem to bother anyone until it's too late.  I'm angry that we are perfectly okay with throwing babies and young children under the bus for the good of everyone.  I'm angry that I can't seem to hold a trivial conversation anymore.  I'm angry that there are groups of people who write hateful things about parents in my shoes because we utilize biomedical treatments.  I'm angry that we have to because the medical community has turned their backs on our children.  I'm angry that in the big scheme of things, my child doesn't matter to this world.  I'm angry that friends who once trusted me, consider me crazy now because I researched my son's condition and came to an unpopular conclusion....confirmed by lab results.  I'm sad that I have to watch babies close to us get chronic ear infections, diarrhea, eczema, allergy shiners, constipation....and I know the parents don't want to listen to anything I have to say.  So I have to watch them travel the same path.  I'm angry that my child has to endure so much.  Yes, I am ANGRY!

But I am not angry at God.  He has lifted us up and carried us through this.  We have not waded through these waters on our own strength.  A veil has been lifted from my eyes.  I am no longer oblivious to the evil in this world.  It makes me so thankful that God has prepared a place for us.  A place where there is no evil, greed, selfishness.  I am that much more thankful for His goodness and mercy.  All this ugly is a blink of an eye...but our eternity is beautiful.  I'll hang my heart on that before I turn in for the night.  

Pull up a Chair

Just A Little Update

For a month now, we've tried something new with B.  Call me paranoid, but I don't want to jinx it, so I'm not fessing up on my blog.  However, if you want to ask me in person or shoot me a message, I'll be happy to divulge that information.

Last month, I was looking through my previous posts and I realized B had only gained one pound all year.  One. Bringing his total weight to 35 lbs.  He's almost 6 and fairly tall.  He does have my small bone structure working against him, but still, one pound in a year?  He eats normally and sometimes more than I do.  He's just not absorbing his nutrients properly nor metabolizing fats sufficiently.

In just one month of this new thing we are trying, B has gained 2.5 pounds.  In the first week he gained 4!  We skipped a week while we were at Autism One and he leveled off and even lost a pound.  But we continued this new thing when we returned.  His sweet little face is filling out and he's just looking healthier.  This 'new thing' is supposed to help the body absorb nutrients.  I think it's working!

This week has been very good.  B's tics are minimal and we noticed a difference in his speech today!  He wasn't dragging out his words or taking a long time to get his sentences out.  His speech had been affected for months.  I don't know if it's decreased inflammation or the fact that his body is getting the nutrition it needs or both.  We are very happy about this!  He asked me today, "Mommy, am I talking fast?" :)

I really want to get his IgG test redone in a few months to see if some healing to his GI system has taken place. Wouldn't that be wonderful!

Hurdles

Today, we helped B's Nana with a garage sale.  Some giant hurdles were leaped with this sale.  The first: B was able to let go of some toys.  This is huge for him.  He has emotional attachments to almost everything.  He asks me take pictures of his jammies when he outgrows them.  He saves torn art projects and broken toys.  The fact that he let people walk off with his toys was a big milestone.  I was very proud.

The second hurdle: he greeted the customers.  He walked over them and explained how toys worked.  He didn't hide inside or behind me.  He drew pictures for them.  He reciprocated conversation.  He didn't stand in the front yard shouting, "Who wants to buy a picture?"  like his sister.  :)  He was polite, and helpful, and very brave.  Social situations are not usually his cup of tea.

Two women stopped by the sale with 3 children.  One little boy of about 3 or 4 kept darting from his mom, toward a certain table.  His mom took an item out of his hand, he picked it up.  She said "no" and took it from his hands again.  He began to cry loudly and picked it up.  I empathized with this mom, remembering a younger B.  I remembered when we tiptoed around every situation because it would set off a meltdown.  We were constantly trying  to be aware of the triggers.  When he would have a meltdown, nothing would calm him.  We would leave wherever we were and go to the car, or home. or somewhere B could be alone with us.  A place without a lot of people around.  It didn't hit me until those mothers and their children left that that little boy had autism.  I mentioned something to Erik and he said, "Yes, she had a 'walk for autism' shirt on."  I looked at B, sitting quietly, printing his name on a portrait of himself sitting in a race car.  I realized then and there how tall that hurdle was....and he cleared it.  From numerous meltdowns...even hourly meltdowns, to very few.  Maybe one, if that, a day.  They are shorter and milder than our days of hour long screeching over something that seemed so minute to us, but was monumental to him.  He watched that little boy, not with a puzzled look, but with a look of understanding?  wonder?  interest?   When the little boy left, I explained to B that he had autism and it made it hard for him to calm down.  B replied, "Oh.  I get it.  Mommy?  When the lights hurt my eyes....is that autism, too?"  He understands more than I ever give him credit for.

People have asked me if B has autism and I never know how to answer that question.  His official diagnosis is PANDAS.  At the conference last week, this link was cleared up for me...sort of.  Dr. Rosario Tifeletti explained PANDAS as following a pattern:  Neurotypical----->PANDAS---->PDD-NOS---->Autism.  Had we taken B to a doc who was not familiar with PANDAS, I believe he would have been diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified).  He certainly fit the mold at that point in time (before biomed).  PDD-NOS is on the autism spectrum.   We also learned that it is important to decrease the brain inflammation.....or B may regress back to PDD-NOS or further on autism spectrum.  Erik learned at another lecture that the key to reducing the inflammation is healing the gut.  It all comes back to increased intestinal permeability or "leaky gut" and it's connection to brain function and overall inflammation in the body.  I probably sound like I'm talking nonsense right now.  Goodness knows I didn't understand a lick of it until I started reading the medical journals and studies.  So, we have to heal the gut.  We have to.

These past few months, B's tics have been more severe and continuous.  His speech has been affected...which I mentioned in another post.  While he used to be quick with an answer and very articulate, it now takes him a long time to say what he wants to say.  He's still articulate, it just takes him longer and he drags out his words.  Pair these things with the bladder issues (the number 3 reported symptom of PANDAS by the way) and we've got our work cut out for us.  Heal the intestinal lining and reduce inflammation.  That's what we have to do.  We are going to embark on a new protocol for this (in conjunction with biomed...but fewer supplements).   I'm a little nervous.  I don't want to set him back, but I know we need to do something different to move us forward.  Please pray wisdom for us.  That Erik and I follow God's leading...that we hear Him loud and clear.  I've known we've needed to do something different for a while now, but I've been hesitant to change what we are doing even if it's just momentarily.  I've been waiting for the okay, but I think this time God is giving it to Erik and I need to trust him.  B's jumped some tall, tall hurdles....this is will be his biggest one yet.