Dear friends,

For 2 weeks I've been telling Cody's neurologist that his seizures are 100% induced by noise.  EVERY TIME the phone rings, he zones out.  Every time the door bell rings, same thing.  My neuro shrugged it off.  So I induced a seizure on camera by starting my coffee grinder (video is attached) and emailed it to Dr. Roberts.  He emailed me back within minutes (by the way, this is the neuro who is IMPOSSIBLE to get ahold of) and said this:

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"Boy, I see what he's doing, and how it's similar to what we saw when we monitored him, but it stops too quickly for me to be convinced it's a seizure. Usually with a stimulus-induced seizure, the seizure continues on and runs its course regardless of whether the stimulus (noise) has stopped. Cody seems to come immediately out of the stare when the coffee grinder goes off. Stimulus-induced seizures are rare to begin with, and this makes me even more skeptical. If there is no improvement with the increased Zonegran (150/day), lets go back to 100/day and get another quick EEG. You can bring the coffee grinder along if you like, but we should capture one of these noise-induced spells. I will be away tomorrow, so early next week would be the earliest I could look arrange that for you.  Thanks for the video.

Colin Roberts, MD

Pediatric Neurology

Doernbecher Children's Hospital

Oregon Health and Sciences University

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I then emailed Dr. Chugani in Detroit and here's what he said:

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"I looked at it.  He seems to freeze, but hard to tell if it is a seizure. Probably not.  But an EEG would be useful and would be easy to get in the outpatient setting if you create the noise. 

H. Chugani"
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Soooooooooooooooooooooo....anyone want to join me in praying that these noise induced "stares" ARE NOT seizures after all?????  It's hard for me to wrap my brain around because we had an EEG at the hospital April 12/13 where Dr. Roberts confirmed seizure activity.  And this 'stare' does look similar to what Cody was doing at the time.  I can't imagine how less than a month ago there were seizures...and somehow they've been replaced by these noise induced stares that "aren't" seizures?  But apparently it's possible since both neuros said they doubt it's seizure activity. Only the EEG will tell - please pray for us to be able to get in ASAP next week.  Should be an outpatient one that's only 20 minutes...not too harrowing.  IF IF IF these aren't seizures...could he be seizure free again???????????????????????????????????????????  Calling all prayer warriors....calling all prayer warriors.  I don't want to get my hopes too high because the EEG may prove otherwise.  But lots of prayer can't hurt matters!  Thanks and I'll keep ya posted!

Love,

Shawna

May 7

I have to tell you Cody's latest trick.  He can now take off his pants (or shorts) AND undo his diaper.  So most times I put him in his play pen to go make his breakfast or do an errand...I inevitably come back to find him standing there naked from the waist down.  The first time he did it, I came back to discover him tinkling on the floor of the pen with a HUGE grin on his face.  I'm sure he thought it was big fun!  Despite all he goes thru, he never stops making us laugh - or teaching us to remember to laugh!  He is a joy on every single level. 

We've still been seeing tons of these noise induced "episodes."  I just turned on the water faucet and that made him have one.  I'm dying to know what these are - and what to do next.  I'm praying that an EEG will happen THIS week. 

Boy did our church service hit home this morning - it was on worrying!  I was SOOOO convicted about how much I worry.  The pastor reminded us that when we begin to worry, pray instead and release the issue to the Lord.  When it creeps back into our minds...pray...and release.  Praying is the opposite of worrying.  That is such a challenge for me because I tend to live in fear and worry about Cody.  Sometimes it's almost like I'm torturing myself.  I can take a perfectly good moment like him sleeping on my lap - and almost force myself to remember that he's got all these toxic drugs in his body and who knows what the ramifications of that will be in the long run?  A year's worth of high powered anti seizure meds.  Then I worry about the upcoming week.  It's like I can't allow myself to just feel good.  I have to remind myself of all the harrowing things in our life...all the uncertainties...like I'm saying "Shawna, what are you doing feeling happy?  Don't you realize how miserable your life is?"  I know that those are the words of the enemy himself.  God doesn't torment.  God doesn't create guilt.  God doesn't want us to worry.  So hard to remember.  So hard not to fret!  But rather than worry, God offers perfect peace. 

"Be anxious for nothing, but in everything by prayer and
petitions with thanksgiving let your requests be made known to
God. 

And the peace of God, which surpasses all comprehension, will
guard your hearts and your minds in Christ Jesus."
Philippians 4:6-7

That's what I want - the peace of God that surpasses all comprehension.  I want to travel this hard road with that kind of peace.  A peace that says, "despite my circumstances...I feel good.  Despite the unknowns...I feel at rest."  The key?  Be anxious for nothing - but instead pray.

Shawna

May 8

Wow what a day.  5 hours at OHSU.  I met with the "metabolic team" to discuss possible genetic/metabolic reasons for Cody's seizures.  They took blood for about 6 needle in the haystack possibilities...but basically said that I will probably never know what caused his seizures or brain abnormality.  The Dr. said it was probably a genetic fluke between the sperm and egg.  Chances of us having a 2nd child with Cody's issues are less than 5%.  That was the only good news from the meeting.  The Dr. was nice....but blunt.  I asked if there was still any vague possibility (in his opinion) that Cody could turn out relatively normal.  He didn't hesitate.  He just said "no."  Then "many families find that having a disabled child and happiness aren't mutually exclusive."  I said, "easy for you to say."  He meant well.  He really did and I really like him overall.  He spent 2 hours with us and was very detailed -- I could tell he really tried to come up with answers for us but there just probably aren't any.  Then it was off to the blood lab where they drew 6 vials of blood - and my prince valiant didn't even flinch!  He just looked around and smiled.  What an amazing countenance has has.  His reward?  The phlebotomist gave him a way cool black hot wheel car! 

I left in a daze.  I've never heard a Dr. say "no" instantly and without hedging when it came to my "can he ever be normal" question.  It never ceases to feel like someone's knocked the wind out of me. 

But I have two choices.  I can buckle under and give up.  And 'prepare' myself for that prognosis.  Or I can still hope.  Still pray.  Still claim God's promises.  Still hope for healing.  And that's what I'm doing.  The minute I got in my car I turned on praise music and sang along..."what a wonderful Maker.  What a wonderful Savior.  How majestic Your whispers.  How humble Your love.  With a strength like no Other.  And the love of a Father.  How magestic Your whisper.  What a wonderful God."  And the coolest thing happened...the words become truth for me.  As I practice that discipline of praying instead of worrying, a magical transformation happens.  YOU STOP WORRYING!  Haha.  What a concept.  I set my flace like flint against the doubt and fear I felt...and instead hand those worries over and simply abide in Jesus.  It really made a difference as I drove away.  That's not to say I haven't stolen the worry back in the last couple of hours.  But I'm hoping that I can do this more often than not.

That's my crazy day.  Praise the Lord that He's patient with me. 

Shawna

May 9

Praise the Lord.  I just got a call from the EEG lab and they had a cancellation for TOMORROW!  That's exactly what I prayed for all day yesterday.  They told me yesterday they couldn't get Cody in till the 17th which was 10 days of NOT knowing if these are in fact seizures.  And if they are, it would be 10 extra days of 15-20 seizures a day!  Tomorrow we will know and will be able to adjust his meds accordingly.  I'm hoping, praying, and believing these aren't seizures and we can wean him off of all these drugs.  What a dream that would be.  Please pray along these lines if you feel led to.  Just turning on the faucet is causing an "episode" and they are happening so frequently it is freaking me out.  Thank you Lord for answering my prayer.  That was the thing yesterday that bothered me the most...waiting 10 days to find out what these are! 

I'll post the results as soon as we get them.  Don is off to Las Vegas on business all week - luckily my mom is here at home to help.  But it will still be a long week being the sole person responsible for Cody's meds and all. 

But for today's answer to prayer -- I choose to be grateful and joyful.  And what a lesson!  Instead of worrying about it all day yesterday, every time I wanted to worry I prayed instead.  So I didn't spend the day worrying about the EEG date...I spent the day giving it back to the Lord.  And so it was not a day wasted fretting....it was a day spent trusting.  I'm grateful He honored my small attempt to be obedient - it's given momentum to try to do the same today!

with love,

Shawna

May 11

I got the EEG results - tons of seizures.  He's having about 20-30 a day.  The neuro suggests we try Trileptol next - a new anti seizure drug.  We're praying about that vs. the diet vs. no meds at all.  I can't write much now as we are just getting up for the morning and Cody is starving.  But wanted to post this much.  We are devastated, obvioulsy.  On top of this news, last night Cody went into a series of episodes where he was rhythmically grabbing his thighs and raking his hands up to his chest.  He goes into a kind of trance and quivers.  Very disturbing.  The pediatric neuro on call said it's "self stimulation" which is common for kids with delays.  They do something over and over and king of go into a trance.  There's something comforting for kids like Cody - in drawing their hands to the center of their body over and over.  Kind of a fetal position thing I guess.  One more fire to put out.  Well gotta go - thanks for reading and caring.

shawna 

May 14

Gosh - another crisis.  Cody's poking his eyes 24/7.  His occupational therapist said this is a HUGE issue and is common among delayed kids (I'm so sick of hearing that;  "this is very common among delayed kids.")  Nothing stops him.  He doesn't even come close to understanding 'no.'  We say "no eyes!" very firmly and bat his hand away to no avail.  I was told to watch him as much as possible to make sure he's not doing this.  He apparently doesn't feel pain like "most" kids and shoves his finger way into the socket (gross, I know.)  So I feel like I have to constantly watch him which is nerve wracking.  His OT suggested calling his eye Dr. to get a pair of goggles which cracked me up.  He would NEVER keep them on and even if he did, he crashes backwards & forwards in his playpen all day and would jam them against his face non-stop.  I have no solution but to pray.  One more fire to put out. 

He's doing much better with the self-soothing activity.  His OT said she's never seen anything like it before and that it looks less like self soothing and more like he's in pain.  So we rushed him to the dr. to rule out any medical issues which we won't find out about till Monday.  But he's much less aggressive about it and only does it a few times before stopping himself usually.  Whew.  Perhaps this fire is putting itself out?  His OT had no idea why he does it - clawing at his legs and working himself into a frenzy.  She said it's probably some sign of stress. 

Speaking of stress (and aren't you stressed out just reading all this?) -- he's still having lots of seizures.  We're leaning toward taking him off all meds for a month and just taking a break from side effects.  He's not eating well, he chokes on water for heaven's sake!  He's not sleeping well.  He's constant motion.  The list goes on and on.  Just eating and sleeping would make for a good month for me.  We're still praying but are leaning that way.  Our dear life group members have each taken a day to fast and pray for Cody this week so there's no shortage of prayers on his behalf.  I can't imagine someone giving up food for a whole day for my little guy -- what a gift. 

So that's our news.  I'm at home with Cody while Don got to dress up in a tux and go to his company's 10 year anniversary event at the Hilton.  I had my fancy dress and sparkly jewelry all ready to go...but Cody's just doing so poorly that we weren't comfortable leaving him for a whole evening right now.  There was dancing too....my favorite.  Instead my date was Cody and rather than dance, we took all his toys out of his toybox at once and littered the floor with them.  He went from one to the next to the next with a huge grin on his face!  Course all he does is chew on them - but he had fun.  I followed close behind wiping up drool.  It wasn't the Hilton, but we made the best of it. 

love, Shawna

Great Thoughts

This was sent to me by my friend Kim - really hit home.  Thought I'd share.

Shawna, I was thinking about Psalms 55:22 where it says, "Cast your burden on the lord
and He will sustain you. He shall never permit the righteous to be
moved."  That word "burden" in hebrew means what is given by God -- your
lot. The word "cast" means to throw or hurl. How intersting that God is
asking us to take what He has given us and throw it back to Him...like
playing catch? Then it says if you do this He will sustain you. Another
cool word: meaning all these different things... to keep in, feed, bear,
comprehend, nourish, guide, hold, be present, provide sustenance.
Then he goes on to say God shall never permit the righteous to be moved.
It seems like the righteous are moved all the time, so what is He
saying? The word "permit" is similar to the word cast: it means give,
appoint, cause, bring, make, deliver up...so He is saying whatever He
throws to you, you throw back, and He won't throw something designed to
knock you out. (moved, literally, cause you to waiver, be carried off,
cast out, slip, fall in decay.) He doesn't work like that. But He will
throw us something big, heavy, to teach us how to throw it back. He
starts with smaller things and builds our muscles...You are being
trained in the art of "trustball" with God! 

Remember when Cody's reflux was the only big issue?  Then the next ball....He allowed this anomaly with cody's brain for reasons we don't know, but what we do know and can bank on is that if you throw this burden that has been given to you onto the Lord, He
will bear you, understand your pain, guide you, provide sustenance, and
keep you in His safe pasture. And He isn't out to bring you to the edge
and push you off.

May 15

Wow - it's hot out!  Unlike my husband who lived in Arizona and can't get enough sun and extreme heat...the minute I step foot outside and feel how hot it is, my first thought is "how soon can I get back inside to my air conditioning?"  Don and I are opposites for sure!  So here I sit in my home with the "air" on...ahhhhhhhhhhhhhhhhhhhhhhhhh.  Cody is identical to me.  He hates the sun, hates the wind.  Like me, he hates anything that makes him remotely uncomfortable.  He also has my pale white skin, poor little guy.  I hoped he'd come out with Don's gorgeous dark complexion but not meant to be.  In the summers to come, Cody and I will be hovering under a shady beach umbrella next to Don who will be baking like a lizard on a rock.  At least I'll have a companion in the shade!  On our honeymoon in Maui, Don and I got beach chairs side by side...but about 4 feet apart.  Mine had a H-U-G-E beach umbrella the size of a satellite dish over it...and was his perched far enough away so he didn't have to lay in the shadow of my umbrella.  We'd stretch arms to hold hands while we each enjoyed the beach in our own unique way!   

Like me, Cody takes forever to wake up.  He's in a daze and loves to snuggle and rock when he wakes up.  Unlike Don, who could recite the Gettysburg Address upon awakening.  But luckily, Cody did inherit Don's temperment...cool and easy going.  Unflappable.  Brave.  Which has served him well in the furnace of affliction he's lived in for the last year.

So there's our family profile.  My little sleepyhead just woke up so it's now time to snuggle and rock for a bit.  I cherish these times probably more than any other.  I even dream about them.  he is such a yummy little love...so huggy and so in love with being held and touched.  Unlike a lot of kids with delays who are averse to physical touch, Cody craves it.  He's constantly holding my face in his hands...reaching out for me.  When he's in his high chair eating a meal, it never fails that he reaches both arms out wide to me.  And I always lean in and grab his hands and press my nose up against his.  We hug and smile.  And then he gets his next bite of food.  Such spirit is infused into this little boy.  Such a lover.  So affectionate.  Despite all he's been through - that is his primary trait...can you believe it?  A testament to God's grace. 

With love, Shawna

May 19

We made our decision.  We are removing Cody from all drugs.  He will be drug free in about 1.5 weeks.  It was a long process coming to this conclusion but we feel good about it.  I believe that Cody's noise induced seizures may be caused by one of the drugs he's on.  Clobazam has made him a crazy man from the get-go.  He's hyper active, can't sleep, is a bit crazed all the time.  It makes sense to me that along with these side effects could indeed come noise sensitivity.  Before we moved on to another drug or the keto diet - I wanted to make sure that Cody's new seizures weren't being helped along by this drug.  Besides, he's been on drugs for an entire year and they've done NOTHING.  We want him to have a break from side effects (like not eating or sleeping) and have some peace for a short time.  Plus, we literally haven't slept thru a whole night for a year straight and we also need the break from the craziness.  In a perfect world, getting him off drugs will calm him down and perhaps keep him from startling at the slightest noise which is inducing these seizures.  We have prayed much and done a lot of research and thinking before arriving at this decision.  We feel good about it.  If as a result his seizures get completely out of control, we will put him on the "next" drug immediately.  Obviously we don't want to jeopardize him in any way. 

So far - as he gets down to the end of this weaning process - he slept thru the night last night for the first time in a long time.  No tossing and turning or crying out which is his norm.  He's using a crude pincer grasp to grab at things which is brand new.  He's more smiley - more verbal - and more calm.  We love what we are seeing.  HIs seizures have remained the same despite the wean -- about 7 a day.  We have the phone ringers turned off, and are trying to help muffle any sounds that  might startle him but they break through anyway.  Every time the faucet is turned on it's potential seizure time.  I've developed a method of singing over every move I make.  Seems like if I sing before, during and after I turn on the faucet - or make some other noise - it all blends together to Cody and doesn't induce a seizure.  Needless to say - it's a pretty funny scenario.  I'm running out of songs too - I'm down to "the girl from Ipanema" and I'm not even sure where that one came from!  Must be the hot weather making me think of things tropical.

Many of our dear friends in our Home Group are fasting and praying for Cody one day a week - as are we.  It's never fool proof to remove your child from meds when he has seizures and it can sometimes lead to dangerous waters.  We are grateful for that level of support and can't imagine anyone giving up food to help us with our plight!  Wow!!!!  One person even fasted 2 days last week on behalf of Cody.  Amazing. 

That's our decision.  We wait, watch and pray.  Love,

Shawna

May 21

Hi there - Cody is doing just fine as we wean these meds.  He's had 3-6 seizures a day this weekend which is actually lower than before.  He's more verbal than ever and in fact kept us up till midnight one night with his whoops and hollers.  His hand dexterity is much more improved.  He's mouth coordination is way better.  He's picking up tiny cheerio sized snacks with a pincer grasp and putting them directly in his mouth (course he only does this about 2 out of every 10 attempts...but hey that's better!)  So all in all, there are marked changes we're seeing as the drugs decrease.  Tuesday we bump him down a final notch for a week.  For those who have written concerned about removing the meds - Cody's seizures are *not* grand mals.  That's the way most people picture seizures so I understand that some may panic at the thought of seizures running wild with no meds.  Cody has 3-6 "staring" spells a day which are clinical seizures but don't look like the dramatic spastic seizures that most people associate with epilepsy.  He's never had grand mals, luckily.  They are dramatic to us, don't get me wrong!  He basically zones out and does a slo motion head drop for about 10 seconds and then cries afterward.  If we see *any* sign that things were getting worse, trust me we will use the proper precautions.  So far things have only calmed down and gotten better.  If they went in the other direction suddenly, we do have rescue drugs on hand. 

I'm hoping and praying that as we notch the drug down one last time we will see fewer seizures and more of a tolerance for noise.  Sheesh - today I merely shook salt into my soup dish and that tiny sound gave him a seizure.  Yet he can be in a room full of people and be fine!  It has something to do with being surprised by the sound. 

Tomorrow (at 8:30 am!) we go to the Casey Eye Institute for help with his eye poking.  He is still doing it regularly and it doesn't look infected but they will tell me for sure if he's causing any damage.  I fear they'll recommend goggles which will be insane to try to keep on him!  This new habit is driving me crazy as I can never take my eyes off him or leave the room.  Inevitably when I do I come back to him with his finger stuck clear inside his eye socket.  It's horrifying.  One more crazy thing to deal with.  We'd love prayer for this weird situation. 

So that's our saga!  Never boring around here, that's for sure.  I read the scripture today about how not even a sparrow falls to the ground without the Lord's permission and knowledge.  That encouraged me.  Sometimes I feel like He forgot our address.  But I believe the Bible is true - therefore I KNOW it is a fact that He knows all we go thru here on our little acre...and is more tuned in to Cody and his needs than I will ever be.  I'm trying to trust that even when things go bananas.  God made Cody.  He created the very brain that is vexxing us.  He knows it's wiring and circuitry and HE IS IN CONTROL.  I pray mostly these days...that I will not be in the way!  

with love, Shawna 

May 25

So far so good reg. the drug withdrawl!  Cody is nearly off everything.  The "big" drug that caused the most side effects (clobazam) was stopped Tuesday.  I imagine it will be awhile till it's completely out of his system.  Still, last night at our Life Group, everyone commented about how different Cody is already.  More alert, more smiley, more stable when trying to walk.  They couldn't believe the change!  So that was encouraging.  Course I'm not sure how to feel given that the seizures are still alive and well.  It's getting *really* old tip toeing around every sound we make.  But his seizures seem to be less upsetting to him - he cries less afterward at least. 

 I'm happy for the progress he's making already as he comes out of his drug fog.  But I'm always remembering that it's seizure control that is the goal.  I pray that it was the drugs making him noise sensitive.  If not, we're faced with the no-win decision of a new drug vs. the ketogenic diet.  That is NOT a decision I want to face. 

I continue to be humbled by our dear friends who are still fasting a day this week for Cody.  They've committed to fasting one day a week until we break through this seizure barrier.  Who could ask for more support?  As my dear Pastor from Bellevue told me the week Cody was diagnosed, "Cody is the safest person in the room."  It's so true.  I know of no one who is more prayed for, fasted for, and "covered" spiritually ...than my son.  How can I doubt?  How can I question?  Cody is safer than any of us.  He's had hundreds of people dedicated to praying for him every day for the last year.  What other toddler has had such intercession? What 1.5 year old has had people fasting for him every week?  What other little one has a website of his own that is visited by hundreds of people who want nothing more than to find out how he's doing today.   We are blessed beyond measure.  This trial has given me countless opportunities to answer the question, "how do you do it?  how are you surviving this?"  That question has come from customer service reps, relatives, friends, strangers...anyone who encounters Cody or his website usually says at some point:  "I can't imagine going through what you're going through." 

I'm thrilled for every opportunity I have to answer those questions.  Cody has become an ambassador for Christ.  I am always able to say, "with the Lord in my vessel, I laugh at the storm."  I don't say that smugly...or in a cavalier way.  I say it from the depth of pain only a mother can know once she's looked in the face of her suffering child.  Jesus Christ was our captain long before this tragedy.  He'll be our captain through it and to the other side.  And when our little family is in Heaven, it is one of my greatest prayers that I will see people there who were brought to Him through Cody's illness.  How redeeming that will be.  I laugh at this "storm" because compared to the greatness of our God...this trial is tiny.  In light of eternity, this tragedy is but a breath.  Considering that I get to spend eternity with my son where there are no more seizures, no suffering, no sleep deprivation, no drugs...I can hang on a bit longer.  We can laugh at this storm as a family because our hope is not on this planet.  Our delight is not dependant on good health and comfort.  We cast our eyes toward Heaven - to the lover and perfector of our souls.  We trust the One who is in control.  We cast our burden on Him and feel peace.  We can't carry it ourselves, it's far too heavy.  But He can.  We don't understand why we were chosen for this furnace.  We are scared at times...sad...mad.  But there has never been a moment of pain, fear or anger that hasn't processed out to the same Truth - God is in control.  Cody's seizures will stop when He determines....not a day before.  Cody will be as developed as He dictates.  That's our Truth.  And I've been able to repeat that to so many who ask 'how do you do it?'  That....is how I do it.

Shawna  

May 28

We are sure enjoying having daddy home an extra day this weekend! Usually on Sunday night I'd be bracing myself for the beginning of the work week and Don being gone - how nice to have an extra day of help and companionship! 

Cody's still tolerating the drug wean well - no increase in seizures but alas - no decrease either.  Today we went for broke and took him out of the house...we were looking at condos and in the manager's office a phone rang and boom - seizure.  He's still having 6 or so a day.  I think my theory that the clobazam was contributing to this new startle type of seizure may not be panning out.  Granted, it takes awhile for the drugs to leave his system completely...but he's been of clobazam since Wed. and the seizures haven't changed.  I would have expected to see some dissipation by now. 

We are exploring the idea of downsizing.  We need a 1 level home for sure since Cody's not walking anytime soon and I just can't lug him up and down the stairs 5 times a day for much longer without breaking my back.  He's almost 35 lbs. and 3 feet tall!!!!  So as we're thinking about one level homes...we're also thinking about just doing a condo for a bit...no yard work, less house keeping.  Either that or a 1 level with a small yard!  Having a 2 story home is nice...but just not practical for us right now. 

We have an appt. with Dr. Chugani on June 7th and I emailed him today saying I don't think Cody should make the trip with all his noise sensitivity.  I suggested I fly out there by myself with all Cody's records and some videos of him.  Chugani wants me to send the records and he'll review them - to tell me if it's worth me coming out alone.  I could fly in and out on the same day.  We are so desperate for information...I so want to sit down with Dr. C. and ask all my questions. 

That's our news for this Sunday.  I hope you all are having a wonderful memorial day weekend.  It's a bit rough for us - this exact day last year we had just been admitted to the hospital with the first glimpse of Cody's seizures.  Our 1 year anniversary of seizures.  Yikes.  I guess the good news is that we're still standing.  Still living and breathing.  Still married.  Still in one piece.  Still pressing on.  We've watched our child have seizures for an entire year.  Who knew they could survive such a sight?  Such a trauma.  Such a horror.  Guess we're a lot stronger than we imagine we are, huh? 

Blessings, Shawna 

May 31

What started out to be one of the worst days I've had in awhile...turned out to be the best!  I LOVE it when that happens.  I spose that's how unpredictable God is!  Poor Cody spent the whole afternoon at the Casey Eye Institute in Portland.  He did his famous eye poking for them and they...freaked out.  After seeing 2 Dr's and hearing that this was 'very serious' and 'dire' I was sufficiently freaked out as well.  They said that given how deep Cody's gouging and how often he does it, it wouldn't take much for him to injure the ocular nerve permanently (translation...go blind.)  They said he MUST stop NOW.  Their answer was arm restraints which made me bawl.  But I have to say, he doesn't mind 'em much!  It's a little board wrapped in foam that velcros around his arm from his wrist to his shoulder preventing him from bending it.  They use these all the time when kids have eye surgeries and can't touch their eyes.  He wore it all night tonight and tolerated it really well.  Right now I only put it on one arm since the right eye and right arm are only involved in the eye poking.  This is supposed to "train" him to stop the repetitious behavior.  I pray it does.  Poor little guy just couldn't have much more wrong with him!  The list goes on and on!!!!  It was a grueling day.  He also had occupational therapy and the therapist made several points about how "low tone" he is.  The biggest bummer about being lowt one is you can't really control your limbs and get them to do what you want them to do.  They just flail.  That has always been Cody's biggest obstacle. 

After the rough day, I was hardly prepared to welcome 15 people to my house for our Wednesday night Life Group from church.  Two of the people came early and were hanging out with me as I told them my sad tale of woe from the day's events.  In the middle of me telling them how the therapist was very discouraged about Cody's inability to control his limbs....HE STARTED WALKING!  Right before our eyes...with no preparation...with no indication...he lifted himself up off of John's knee and toddled right over to Tina!  He must taken 3 of 4 steps by himself.  That got the ball rolling and as each Life Group member arrived, they joined us upstairs and Cody's walking grew momentum.  An hour later we were in a circle and Cody was walking from one of us to the other as we applauded!!  There were times when he took 8 steps COMPLETELY INDEPENDANTELY!  We were beside ourselves.  This is the very group of people who have been fasting and praying for him for 2 weeks.  The very arms he first walked into (John Leasure's) were the arms of a man who had fasted for him all day today.  What an answer to prayer and what a boost!  Granted, he's wobbly...but by the end of the night he was literally walking all by himself from one side of the circle to the other.  I am filled with joy and gratitude.  He can walk!!!!  He's still beating the odds!  My little man astounds me every day.  And the whole time he was walking it was with the arm restraint slapped on his right arm.  What a cutie. 

It was so meaningful to share this moment - Cody's first steps - with the group of Saints.  They love Cody so dearly.  They have stood alongside us through so much.  Many nights we have spent our entire Wednesday night lifting Cody in prayer.  They've fasted, prayed, babysat, held, fed, and loved our dear Cody.  What a privelidge to see our prayers paid off so suddenly and so vividly.  We were all beaming, crying, clapping...I will never forget it.  Yay God!

love, Shawna