Hi all,

Wow what a weekend.  Yesterday we had one of Cody's all time worst gastro attacks.  He started screaming, crying, doubling over - grabbing at us - pulling our hair like a wild animal - it was crazy.  We had no idea what to do.  I finally decided to give him a liquid suppository to try to see if there was some build up.  That seemed to help for a time.  Then at 10pm he projectile vomited for about 5 minutes.  And in the midst of all of it he had seizures on and off for 4 hours.  We gave 1 round of diastat, then another.  Finally he fell asleep and slept peacefully all night.  And not a sign of discomfort today.  GOOD GRIEF! 

And the weird thin is, we have changed nothing.  There is nothing to point to, to answer the burning question of 'why' these gastro attacks happen. 

It is so crazy making.  I remember in the past 4 years exploring every single avenue of his digestion and seizures.  I saw a DAN Dr. (Defeat Autism Now) who specializes in biomedical treatments.  We had every test under the sun on his hair, skin, saliva, urine, feces, blood.  We did food allergy tests.  We did every other allergy test under the sun.  We treated him for yeast.  We used digestive enzymes...every gas remedy you've ever heard of.  I tried the ketogenic diet....a low glycemic index diet to keep his sugar levels constant which is supposed to help with seizures.  I did a dairy free diet, a pureed diet, a blenderized diet, a GF/CF diet.  I was sure there was SOMETHING that was going on - and if I could just FIND it I could help him.  I mean, I spent years going down rabbit trails.  Testing for heavy metals.  Using essential oils...chiropractic...accupressure...cranial sacral massage.  I knew that if I could just eliminate all the variables he'd be better.

Now he's almost 5 years old.  And with the G-Tube - he is getting complete hydration.  His blood sugar levels are constantly even as he gets feeds of the same amounts every 3 hours.  Every day he gets the same, balanced, diet.  And to top it off, this is a formula that is completely hypoallergenic - doesn't have a protein structure - is dairy free - is pre-digested, and is the most absorbable one out there for mito patients like Cody.  In short - I've removed all the obstacles.  And he's still doing as bad as ever.  His gas is as bad as ever.  His gastro attacks are as bad as ever.  His seizures are as bad as ever.

I don't regret all the testing and rabbit trails of the last 4 years.  You do what you can.   But it's so weird to find out in the end, that even with this current eating regime - which eliminates all variables - he's doing no better.  Sigh.  Oh the money, time, energy and stress that was put into the detective hunt for what might be causing him so much distress.  But you have to do it.  And oh there's so much more I could explore.

I read about acai berries.  I read about Hyperbaric Oxygen Treatments.  Stem cell therapy.  You name it.  I think, for us (and I can only speak for us) - Cody's illness really just has a course it follows.  It has a path of it's own.  I can't intervene.  I can't stop it, or change it.  Drugs haven't changed it.  Nutritional intervention has done nothing.  Behavioral intervention - nothing.  A VNS didn't matter.  All the experts all over our country have seen him and here we sit. 

It is the largest lesson in control (actually lack of control) I think there is.  I constantly learn, that I can't fix him.  I can support him, love him, and do what I can do.  But at the end of the day - this little boy is just as sick today as he was the day he was diagnosed.  Nothing I've done has added up to a hill of beans.  I won't stop 'do-ing' --- don't get me wrong.  I will still burn the midnight oil looking for answers.  I will still pray over him every night.  I will still have that faith that his miracle is right around the bend.  But it is quite mind-bending to see that for all my striving for almost 5 years now - here Cody sits - as riddled with seizures, issues, pains as he ever has been.  Wow.  

I have a friend who is dying - quite literally.  She knows it.  She's very afraid.  She is trying to figure out God in all of  this as she hasn't paid Him much mind up till now.  I shared the following with her - it's by Max Lucado - one of my favorites.  It doesn't solve anything this side of the veil - but it does help remind me that at the end of this brief lifetime - it will all be redeemed.  I hope it encourages you with whatever you might be facing today:

“No one has ever imagined what God has prepared for those who love Him.”  (1 Corinthians 2:9.)

Do you see what that says?  Heaven is beyond our imagination.  We cannot envision it. 

Listen to these words on Heaven:  When we reach the mountain we will have come to ‘the city of the living God….To thousands of angels gathered together with joy…To the meeting of God’s firstborn children whose names are written in Heaven…To God, and to the spirits of good people who have all been made perfect….

What a mountain!  Won’t it be great to see the angels?  To finally know what they look like and who they are?  To hear them tell of the times they were at our side, even in our house?

Imagine a gathering of all God’s children – we will be perfect, sinless, no more stumbles, no more tripping.  And imagine seeing God.  Finally to gaze in the face of your Father.  To feel the Father’s gaze upon you.  Neither will ever cease.  He will make all things new.  He will restore what was taken.  He will restore your years drooped on crutches and trapped in wheelchairs.  He will restore the smiles faded by hurt.  He will replay the symphonies unheard by deaf ears and the sunsets unseen by blind eyes.  The mute will sing.  The poor will feast.  The wounds will heal.

He will make all things new.  He will restore all things.  The child snatched by disease will run into your arms.  The freedom lost to oppression will dance in your heart.  The peace of a pure heart will be His gift to you.

New hope.  New faith.  And most of all new love.  The love of which all other loves speak.  The love before which all other loves pale.  The love you have sought in a thousand ports in a thousand nights…this love of His will be yours.

What a mountain!  Jesus will be there.  You’ve longed to see Him.  You finally will.  Interesting what the writers say we will see.  The Bible doesn’t mention the face of Jesus, though we will see it.  It doesn’t refer to the voice of Jesus, though it will shout.  It mentions a part of Jesus that most of us wouldn’t think of seeing. …Jesus blood.  The crimson of the cross.  The life liquid that seeped from his forehead, dropped from His hands and flowed from His side.

The human blood of the divine Christ, covering our sins.  My what a moment.  What a mountain.  Believe me when I say it will be worth it.  No cost is too high.  No sacrifice too much.  No loss will compare.  One view of the peak will justify the pain of the path.” 

with love, Shawna