April 4,

Hi everyone!

Cody had his 2 hour EEG today - what an ordeal.  He was SUCH a trooper - letting the tech scrub his head (which made him giggle cause it tickled) put on the 27 electrodes, wrap his head in gauze, and make him sit relatively still for 2 hours straight!  But he did it!  I *think* I saw a seizure moment - but I'm not positive.  I would say I'm about 75% sure it was one.  The neuro looked at the EEG in that spot when we were there and said that he saw no seizure activity (he can't say for sure till analyzing the results tomorrow.)  He also said the EEG was markedly improved over the last one (which was markedly improved over the one before that!)  So it was great to hear that.  He said it looked "nice and organized."  I wish there had been a more definitive seizure moment - where I could say with 100% certainty "that is exactly what I"m talking about" -- but it didn't happen.  He did zone out for about 5 seconds and his head did tilt down - but it wasn't as dramatic as happens at home.  The neuro and I will talk Thursday and discuss options so I'll have more news then.  Eithe we'll go back for an overnight EEG to make sure we catch one of these seizure moments -- or we'll let it go and see what happens.  I really want to know for sure what I'm seeing every day and it's not my tendancy to leave things unsettled so I will probably ask for a 24 hour EEG unless he can convince me otherwise. 

But now I must give the Code-man a bath because his hair is one big glue ball!  It usually takes weeks to get all the glue out - poor little guy. 

He's doing great overall - still crawling up a storm!  He's happy, smiley, and finally eating better!  His stomach flu is gone (thank you, God!  No more giant loads of vomit laundry!) 

That's it for now - thanks for checking in!

Shawna

April 6

I am writing this with my eyes half mast - Cody was up from 1am - 4am last night.  Constantly moving, squealing, screaming, crying, writhing, arching.....a typical night in other words. :)

He wasn't in any pain - just his usualy hyperactivity from the meds he's on.  I'm supposed to get to talk to our neuro today about his EEG and hopefully he will tell me we can start weaning the meds again.  Sometimes I just don't think I can take another minute of his frenetic crazy movements.  It's almost impossible to hold him at times, he is so wild.  I'm pretty skeptical that the neuro will actually get back to me today.  Last EEG, he said to call him 2 days afterward...and I didn't hear back from him for 2 weeks.  That's the world we're dealing with.  Of course I"ve honed my "annoying" skills to the point that I will call every day until I get to have that conversation.  I really hope he okays a 24 hour EEG so we can determine for sure whether I'm seeing seizure activity or not.  This Dr. usually takes more of a stance of "let's give it a month and re-visit the idea" rather than "let's book the EEG this week!"  And ultimately, he gets to make the decision which leaves me feeling a bit helpless.  I'm curious to see whether Cody's improved EEG would mean that it's unlikely that these moments are seizures.  I'm not sure how all that works.  

We are headed to OHSU Hospital today to meet with the pediatric gatroenterologist to discuss Cody's reflux and gas/constipation issues.  Then we're meeting w/the hospital nutritionist to discuss the same - and to come up with a plan to help him get all the nutrition he needs from mostly pureed foods.  I need to get him off of formula and have to work around all of Cody's idiosyncricies...i think he has a lactose issue.  Hopefully I'll walk away with some answers instead of more questions!  He is off his hunger strike which thrills me and he's back to eating a nice size 3 meals a day.  he's really having problems with chewing again - i've tried cut up carrots, beans, etc and they just fall back out of his mouth.  He does better chewing dryer food but it's a struggle as well.  I'm hoping as we take more meds away that his mouth coordination will improve.

that's it for now - my angel is sleeping so I must utelize the time!  love to you all,

Shawna 

April 7

Still no contact with the neurologist, which sadly doesn't surprise me.  They are never in too big of a hurry to get back to patients - despite the fact that HE told me to call HIM yesterday.  In the meantime, Cody's doing just fine.  Same amount of weird episodes - just a couple a day right now where he'll stop, freeze and stare for a few seconds.  But we have lots to praise the Lord for!  Cody's eating like a wild man - his hunger strike is over!  Today he ate broccoli, avocado, yogurt, porridge, strawberries...and more!  I'm thrilled to see him eat so well.  And my chronic "stuffiness" is SO much better!  I was diagnosed with chronic non-allergic rhinitis which is a fancy way of saying I can't breathe.  It has really made me miserable (it developed when I was pregnant).  For some reason, it is clearing up and I am so thrilled.  I can sleep thru a night without resorting to nasal sprays and Sudafed! 

In terms of prayer requests, Cody's still not sleeping well at all - last night he only made it from 10:30pm - 4:30 am and he was up for the day.  These meds just affect him so differently from day to day.  We are beginning to wean the vigabatrin again since at least I know that Cody's EEG looked really good.  So I'd love prayer for the weaning process as we begin again.  Also for sleep (as usual!) 

Speaking of prayer, our Pastor, John Bishop just found out he has malignant melanoma (skin cancer) and from what they know so far, it is pretty serious and has invaded most of the layers of his thigh.  They are testing to see if it has spread to any nodes or organs.  He is a dear friend and warrior for the Lord - and you have a moment I know he would appreciate your prayers.  He has 3 children and I know their family is rocked by this sudden news. 

It's so hard to understand when tragedy strikes any of us.  I've spent the better part of the last year battling my "why me" complex with the Lord.  Whether it's cancer, seizures, unemployment, infertility -- or whatever else is impacting our lives -- God does not sheild us from sorrow, does He?  The words to one of my favorite worship songs always helps me to know what to do with that sorrow and pain:

"I'm trading my sorrows.  I'm trading my pain.  I'm laying them down for the joy of the Lord.  I'm trading my sickness.  I'm trading my shame.  I'm laying them down for the joy of the Lord.  I am pressed but not crushed, persecuted not abandoned.  Struck down but not destroyed.  I am blessed beyond the curse for His promise will endure - that His joy's going to be my strength.  Though the sorrow may last for the night, the joy comes in the morning."   

Blessings, Shawna

April 9

This weekend was - in a word - crazy!  Poor Cody, something triggered a HUGE case of reflux this weekend and he's basically screamed night and day.  We've upped his prevacid, avoided the proper foods...he's just in a ton of pain.  Reflux really hasn't reared it's head in about the last year - I have no clue why it shows up now.  On top of that, I never have heard back from our neuro about Cody's EEG - and this weekend his "seizure moments" occured about 7 times a day and are longer.  Very scary.  I have a desperate message for him to call me tomorrow to schedule the 24 hour EEG and I fear it will be the standard "we can schedule him in 1 month" speech due to them being "booked."  In short - I feel lots and lots of stress.  Cody only makes it thru about 20 minutes in the night without waking up in tears - so we are super duper sleep deprived.  Please pray along these lines if you are a pray-er.  We could sure use some relief. 

The really big bummer is that even once we have the 24 hour EEG done and we find out what "kind" of seizures these are (my guess is absence seizures or complex partial seizures) -- it will be a matter of either increasing the meds he's on, or adding a new med.  Either option makes me nuts.  It means more side effects, more development lag...it's just such a bad scenario.  I'm so darn tired of medicine.  I will lobby for the ketogenice diet over trying any new medicines - but that will be really tough too since he's been getting such good nutrition.  On the keto diet, he'd get high protein and fat - very little carbs...similar to the Atkins diet.  They do supplement for lost vitamins, etc...but it is still a pretty raw deal compared to his current diet of whole grains, legumes, greens, veggies, etc.  I just don't feel there is a great option -- other than these seizures going away!  To top it all off, he's just begun teething his molars.  UGH! 

On the flip side, our church service today really inspired me.  Our Pastor, John Bishop, has been diagnosed with malignant melanoma (skin cancer) and it has gone down thru all the layers of his skin.  They will operate after Easter to determine if it's spread.  He gave a powerful sermon on trusting God that really helped ground me in the Truth.  He basically said "I don't know if I have next week, but I DO know that I have TODAY and TODAY I will praise Jesus and try to win others for Him."  It was really edifying to me to see someone facing a deep, dark challenge - who didn't buckle or fold - but who instead put on his boxing gloves and said "here we go!  I'm ready for this!  I'm going to fight!"  So often I feel the opposite of that - overwhelmed, afraid, tired, hopeless.  I know the enemy is the author of those "feelings."  But in light of eternity and the power of Christ IN me, I can say as an act of my will "Let's go.  Let's fight these seizures.  I'm NOT overwhelmed. I AM ready for this.  I WON'T be afraid. I DO have hope."  It's a simple change in what I tell myself.  Granted, we also need to be real and we need to be intimate about our fears...but I tend to live there.  I want to be so different.  I so want people to watch me go thru this and be inspired.  I fear the opposite.  I'm grateful for John's reminder that all we have is today.  That what Satan means for evil, God uses for good.  The God works ALL things for good for those who love Him.  It's a rare thing to see raw, pure faith in the midst of life threatening circumstances.  I think I want more of that! 

So as an act of faith and my will, I will close by saying...we are pressed but not crushed.  We WILL have victory over Cody's medical issues.  These seizures WILL NOT rule our lives.  I CAN do this. I AM strong enough.  I WILL navigate thru the medical system.  I am NOT overwhelmed.  God IS in control.  God IS in control.  God is in CONTROL.  This trial will NOT topple us or rob us of our faith.  Our lives WILL continue and we WILL thrive.  Cody WILL THRIVE.  God has a plan for his life - for a future and a hope.  God is still writing this chapter for us.  I will NOT jump to conclusions or assume the worst.  Until it is proven otherwise, I WILL believe in faith that these seizures will go away - and that Cody WILL walk and talk.  This illness will not rob our lives of joy.  Praise the Lord. 

Shawna

April 11

Thankfully Cody's reflux is still better - last night he tossed and turned all night be at least he didn't wake up for 2 hours like normal!  Unfortunately, his seizures are getting worse.  Today he's had 2 already before 11am - and the last one made him shake all over and scream.  I fear the nightmare has returned.  Not a good morning for me.  We do have a 24-48 hour EEG scheduled this Thurs/Fri. because the neurologist considers this an emergency situation.  So while I'm dreading the hospital stay and all the electrodes, needle pokes, Dr's, sleep deprivation...and trying to get Cody to stay on a hospital bed for 2 days straight...I am chomping at the bit to find out what type of seizures these are.  Sadly, then we will be faced with the question "what do we do about them?"  Typically neurologists will just throw a new medicine in the mix - which I'm dreading.  We are finally getting the vigabatrin out of his system and are seeing so much more development because of it.  Now we are faced with potential new medicines to try to fix these new seizures.  It is devastating.  The vortex of seizures is something I thought we were free from.  I guess not.  These new kind are really scary to Cody too - he often cries or looks afraid while they're happening - and they are gaining in length and severity. 

We covet your prayers during this time.  It is hard not to panic.  And I pray we can find a way to deal with these new seizure types without more medicine.  Please pray for wisdom for us to make the right decisions.  And please pray that the enemy wouldn't keep pounding me with 2nd guessing the decisions we've already made.  It's so tempting to think, "did we do something wrong?  Did we allow these seizures to come back somehow?  Should we have seen a different Dr?  Tried a different medicine?  Not tried a certain medicine?"  The questions are endless and really plague me.  Don's far more able to say "hey, we've done our best" and not think twice about it.  My nature is, unfortunately, to lament and fear that somehow I screwed up.  Such a crazy situation.

In the midst of this, Cody's eating better than ever!  He's beginning to self feed little crackers that is a huge step for him!  His hands are still grossly uncoordinated.  He basically grabs the crackers in a fist and tries to push them into his mouth.  But hey, it usually works!  He has no abiltiy to pick up small objects other than to sweep them up in a fist - where they are stuck because he's not quite sure how to open his fist and move them to the tips of his fingers.  He's also gone from a bunny hop crawl to more of a "proper" cross crawl pattern which we are told is a good thing.  He's more inquisitive, more communicative.  Altho he still hasn't formed even so much as a consonant sound.  He just gurgles, laughs, shrieks...not even a sign of words.  He's so far behind.  I was so hopeful that the seizures ending would give him the maximum opportunity to develop finally.  Now they are back and are chipping away at those developmental strides. 

"Please, Lord - remove these seizures once and for all.  You are able.  You can do all things.  Please spare our little angel these life robbing seizures that scare him so.  We beg you.  Give us the endurance to face this devastating turn.  Give us rest and peace.  We still choose to praise You even in the midst of this darkness.  You are still soverign.  You are in control.  Although we don't understand, we trust.  We trust in You, our Rock and Refuge.  Our Stronghold in times of trouble.  Our mighty Fortress.  All of Cody's days were ordained for him before one of them came to be.  He is fearfully and wonderfully made.  We claim these truths from scripture as an act of our will.  We stand on the Truth instead of our feelings.  Amen."

thanks for your support friends.  Shawna

April 11,  con't.

whoops - spoke too soon.  They're getting us in tomorrow (Wed.) instead of Thursday.  The bad thing is they're treating it as an emergency admission since the seizures are so exacerbated so suddenly.  I don't like that part.  We are scrambling to get things in order to leave.  It will be at least two days if not 3.  We'd love prayer for a smooth application of the electrodes and for sanity while we help Cody sit still for 2-3 days straight.  thanks so much!!!

Shawna 

April 14

Hello,  We're back from the hospital.  Luckily Cody had 3+ dramatic seizures during the Video EEG - Whew. It was exhausting.  Poor Cody was a trooper - being confined to a short tether of electrodes that plugged into a box was quite frustrating for him (and us!)  The last 3 days have been a nightmare.  Nights at the hospital found us watching "The Lion King" and "Finding Nemo" at 4am on the hospital VCR.  Cody just couldn't sleep with his electrode helmet on.  Last night was our first night home and he threw up all night long.  His reflux has gone crazy from the stress of these new seizures.  He's in a ton of pain.  We've increased his Prevacid - but it hasn't helped yet. If you can, please pray for relief for him, SLEEP for all of us, and most of all NO MORE SEIZURES!!!!
 
The neuro can't nail down what type of seizures these are until he does further study but at least they don't seem to be the catastrophic infantile spasm clusters from the past - looks like he's grown out of those.  So Cody is one of the lucky ones who outgrew infantile spasms over time.  Whatever these new seizures are, they don't hold a candle to the catastrophic i.s.  that he has had for so many months.  That is good news.  These new ones resemble absence or complex partial seizures.  Or both.  We've upped Cody's dose of clobazam for one week to see if does anything.  If not, we'll probably do the ketogenic diet (high protein/low carb that helps seizure patients.)  Because the seizures are occurring 5-7 times a day it's urgent that we move quickly.  
 
Although we're crushed, the neuro had one piece of good news.  In the grand scheme of things, Cody's EEG has REALLY improved.  This one was even better than the last.  Despite 10 months of 15 seizures a day, Cody's brain has continued to grow & develop in many of the right ways and his brain waves are quite organized - a miracle!  Our amazing little hero continues to rebound!  Because of how surprisingly well his brain has matured, Dr. Roberts is more optimistic about Cody's developmental potential than he was in the past.  In the past, it seemed impossible that Cody's brain could survive so well.  But it has!  
 
However, developmental potential hinges on whether we can stop these new seizures.  Dr. Roberts said we have our work cut out for us.  So once again we are locked in the battle of our lives.  Despite our grief at once again watching our angel seize over and over every day - we choose to praise.  We will NOT let seizures define our lives.  We will NOT let them win.  We adopt this scripture from Isaiah:  "For the Lord God will help me; therefore I shall not be confounded.  I have set my face like flint.."  We steel ourselves for this next chapter in Cody's story.  We will continue to fight a good fight - trusting that the Lord, who created our son, has a great and profound purpose for his little life.  We pray for courage to be brave - and it takes but a glimpse at our dear child to see bravery personified.  How we praise the God who made this perfect little boy who has been entrusted to our safe keeping.  How lucky we are to witness his miraculous little spirit survive and even thrive in this furnace of affliction.  Praise the Lord.  
 
I'll post frequent updates on crazyforcody.com and I'll use this direct email only for urgent issues.  THANK YOU for your prayers and support.
 
Shawna, Don and Cody  

April 16

Well, would you believe that within hours of getting home from our grueling hospital stay, Cody came down with stomach flu and I got it 24 hours later?  We are spending Easter throwing up.  Good grief!  Poor Don is taking care of both of us.  Yikes!!

Happy Easter nonetheless,

Shawna 

April 18

We are on day 5 of Stomach flu - mine left after 48 hours but poor Cody's is persistant!  He still throws up once a day.  Poor Cody - he has such a complex medical profile - we just encounter a new difficulty every day.  His immune system is so shot that when he does get sick, it's twice as long and twice as bad.  His reflux reacts to stress so if he's got the flu, his reflux is horrible.  His seizures flare up when he's got reflux and/or is sick.  And he's got eczema spreading like wildfire due to all this stress.  CRAZY!  Luckily we have great Dr's who I can call (and who take my calls luckily) to advise me.  But it sure is stressful putting out these daily fires. 

We see Dr. Roberts, our neuro, tomorrow to see what we should do next reg. the seizures.  I don't have much energy to write more, to be honest.  Sleep is sorely lacking at our house and I'm still not feeling 100% yet.  I'll just request prayer (yet again) for Cody and for us.  We need it. 

with love, Shawna

April 19