March, 2006 "Seizures and Sadness"

March 2

Hello there,

After being seizure free 2.5 months, I've seen some "suspicious" activity lately. Four times since Friday, Cody's done the same thing: He stops what he's doing...fixates into a stare...and sucks in his lower lip. It only lasts a few seconds total, then he snaps out of it and giggles, plays, etc. No seizure like jerks or anything. Just this momentary glitch. He did it today during speech therapy. We go to OHSU Wed. the 8th for a 24 hour video EEG and meet with the neurologist afterward. PLEASE pray about this new "thing." I am sick to my stomach. I pray it's nothing...maybe just a dis-connect as his brain is readjusting to living without seizures. But my intuition tells me it's very familiar and eerie territory. He got this same kind of look before going into a seizure in the past. Otherwise, he's more alert, connected and happy than ever! Such a crazy journey, this is.

The tricky thing with the EEG is that we won't know if it's seizure activity unless he does it during the 24 hours. So ironically, I pray that he DOES have one of these episodes during the EEG. He's also still doing the weird eye squints so it will be nice to get another EEG read on that.

One other prayer request reg. sleep - he's still waking up 2-4 hours in the middle of the night plus tossing and turning for much of the time he sleeps. I've been cutting back his daytime naps which was helping him sleep more at night...but now he's got horrible gas pain which I am trying to figure out. If it's not one thing it's another, I'll tell ya! This little one keeps me putting out fires daily. I'm trying an elimination diet to determine whether he's lactose intolerant, carb sensitive, etc. It doesn't seem to be triggered by any one food. I have very little energy to adjust his diet and keep logs of what he's eating, etc. But it must be done. Poor thing - these meds make him constipated which exacerbates gas issues. He just can't get a break.

Thank you for your love and support. I am trying not to freak out until we find out whether this stuff is seizure related...but it's difficult. We're just getting our smiley, happy child back - I can't IMAGINE him going back into a trance. Oh Lord, I pray it isn't so. Please join us in prayer if at all possible.

with love and thanks,

Shawna

March 4

Hello,

I saw another "suspicious" moment yesterday. But nothing in between. No other reminiscent seizure activity. Just these moments of staring & sucking his little lip in. It is so difficult, waiting this week. Waiting a week to have an EEG to see whether the seizures are back. Sometimes I think that when we get to Heaven and look back on our lives...it's the "week of waiting" God will point to as His favorite time with us. The time we finally come to and end to ourselves and admit we just can't take anymore. Then He can finally swoop in and give us the comfort He so longs to give us.

I went to Starbucks yesterday - a precious 2 hours when I had a sitter and got away. I read my Bible, intending to take an hour long walk after. I had barely cracked it open when a father and son came in...the little boy was about 5 and was hoisted up on top his dad's shoulders. They were obviously on a father/son "date". Dad got coffee, boy got hot chocolate and they sat together and began a game of checkers at the table by me. Little did they know that I sat a few feet away...my heart breaking. I couldn't control the tears burning down my cheeks as I watched these two just enjoying some time together. "I wonder," I thought, "if Cody will ever know that kind of time...bonding with his dad. I wonder if he'll ever be able to walk into a Starbucks without a walker. Will he be able to speak - to give a big "awwwwwwwwwwwww" when his dad jumps over 5 of his checkers?" I just couldn't watch them - the pain was too great. I fled...got out on the street and just started walking as fast as I could...searching for a place to be alone and cry. I finally found an open field behind the strip mall and I plopped down in it. I felt like I had the weight of the world on my shoulders. I just didn't know how to endure one more minute feeling that depth of pain. How could it be that MY little Cody was going through this? That over a dozen parents & children walked by me at that strip mall - all the kids were healthy. WHY US? WHY ME? I was absolutely overcome with grief. "I can barely do this WITHOUT the seizures, Lord! If they come back...I CAN'T SURVIVE!" I went on to tell God that I have no more strength left to bear the seizures returning. That I will literally die from the pain.

The sun came out and I stopped ranting enough to just "be". I begged the Lord to meet me there. To somehow help me with the pain. Psalm 23 came to mind. "The Lord is my Shephard, I shall not want. He makes me lie down in green pastures. He leads me beside still waters..." I meditated on that awhile. I pictured myself as a lamb and the Lord as my Shephard. I pictured him hemming me in - guiding me to the pastures that are most fertile and to streams where I could drink. I tried to just listen and commune with God. Mostly I just cried and hoped that He was somewhere near. I have no idea how I would survive if these life robbing seizures return. God knows that. I've told him a hundred times. And nothing miraculous happened when I got up and walked away from that field. I just got back in my car and came back home to make Cody's lunch. But somehow...I felt God must have been giving me a standing ovation...for just getting back up and getting in my car! For doing "the next thing." For pressing on. I felt Him yesterday - with me. Nothing changed my circumstance. But I'm glad I took that moment to pause in that open field. And I know that God shared my pain for that hour. Although I couldn't see Him, I'm sure he was there cradling me just as I cradle Cody when he cries. And as I tried to pour my "self" out and tried to be filled with the Holy Spirit...I'm sure that supernatural exchange DID happen. I couldn't get up and leave that field...but God, I believe, carried me out. He is my only hope. The only thing that will get me through this - seizures or no seizures. Sometimes life's pain is so dire...so great...that we literally just lay down and give up. I'm certain that it is at that exact point in time that God is the most thrilled. Because it's then and only then, when we are empty, that He can fill us with Himself.

Shawna

Well we made it through the weekend without any definitive seizures breaking through. He has had a couple of more "weird" moments - but nothing I could specifically call a seizure. Whew. And last night he actually slept through the night! He tossed and turned, flailed and whimpered...but it never did wake him up fully. I was awake much of the night trying to bridge him back to sleep and it worked! I'm not sure how much good sleep he gets when he is so fitful - but at least it's a step in the right direction! I've removed all lactose from his diet and am wondering if that may be helping.

My wonderful, beautiful niece Hayley is in town for 3 days and it has been wonderful (and well timed) to have some breaks. Don and I went to a movie - for a walk - and today I get to go to a Dr. appt. for me! Cody loves his cousin and loves spending time with her so it's a win/win. Church yesterday helped me get rejuvinated after a trying week - living fear of the seizures returning. This exerpt from Streams in the Desert helped too:

"Followers of them who through faith and patience inherit the promises" (Heb. 6:12).

They (heroes of faith) are calling to us from the heights that they have won, and telling us that what man once did man can do again. Not only do they remind us of the necessity of faith, but also of that patience by which faith has its perfect work. Let us fear to take ourselves out of the hands of our heavenly Guide or to miss a single lesson of His loving discipline by discouragement or doubt.

"There is only one thing," said a village blacksmith, "that I fear, and that is to be thrown on the scrap heap.

"When I am tempering a piece of steel, I first beat it, hammer it, and then suddenly plunge it into this bucket of cold water. I very soon find whether it will take temper or go to pieces in the process. When I discover after one or two tests that it is not going to allow itself to be tempered, I throw it on the scrap heap and sell it for a cent a pound when the junk man comes around.

"So I find the Lord tests me, too, by fire and water and heavy blows of His heavy hammer, and if I am not willing to stand the test, or am not going to prove a fit subject for His tempering process, I am afraid He may throw me on the scrap heap."

When the fire is hottest, hold still, for there will be a blessed "afterward"; and with Job we may be able to say, "When he hath tried me I shall come forth as gold." --Selected

Sainthood springs out of suffering. It takes eleven tons of pressure on a piano to tune it. God will tune you to harmonize with Heaven's key-note if you can stand the strain."

Love, Shawna

March 7

Hello! We have a last minute change in plans. After talking with our neuro today, we decided not to put Cody thru the rigors of a 36 hour hospital stay until these "moments" begin to occur more frequently. Right now one happens every 24-36 hours. We hated the thought of spending 2 days in the hospital and perhaps not catching one of them on the EEG. Murphy's law would probably assure that Cody would show no signs of this strange "tic" during the hospital stay - only to have one the minute we leave.

Not only is it expensive for us (even with insurance coverage) - but it is so hard on Cody and us to go thru this elongated EEG - only to gamble on whether he'd actually do one of these weird things while we were there. The neurologist was thinking the same thing and actually called me about it which was a confirmation of sorts. He NEVER calls patients himself. It was his original idea to do this 24 hour EEG. But after we discussed all sides of it, we decided it would be more prudent to wait until these moments happen more frequently to be sure we'd be getting one. He wants to do a 3 hour EEG tomorrow to at least get a baseline for where Cody's at right now...and then just sit tight and wait to see if these weird "things" continue...and if they become more regular we'll do the hospital stay then. He assured me that even IF it is seizure activity, that it's not hurting him. Seizures are only urgent when they are extended for minutes or when they happen many many times a day. What Cody is doing is literally a "blink" every day or two.

While I'm still very nervous about this new thing Cody's developed...I do think I've made the best decision. Please pray that this activity just goes away! And ultimately, it would be awesome if he had one of these "moments" during the 3 hour EEG tomorrow! Thanks so much.

love,

Shawna

March 9

We saw Cody's neurologist today at OHSU. We were relieved that cancelled the 3 hour EEG tomorrow because he feels the squints/blinks are for sure not seizure related. He read Cody's last EEG (done by another neurologist) and said he was pleased and impressed at the improvement. He wants to wait until the weird "moments" I've noticed happen more frequently to do a 24 hour EEG to make sure we get one on tape. And he said that even "if" those are seizure activity, we will be faced with the question of whether the every-so-often seizures are doing more damage than a new anti seizure med would. He underscored how these high powered meds can create delay all by themselves. Which made me more bummed that Cody's been pumped full of them for the last 9 months. But he did suggest that we begin weaning him off the vigabatrin beginning today! I'm thrilled at the thought of eliminating one - and someday two of the big anti seizure meds he's on. But I'm paralyzed with fear that they will allow seizures to break through. The Dr. thought it was worth the risk and seemed to feel that "if" seizures broke thru during the weaning process, that we would be able to gain control again by taking the med back up.

He said he feels Cody's delay is caused in part by brain injury due to past seizures, and in part by his brain abnormality. And he said there's no telling if he'll re-gain much more than he has. All we can do is wait. I think that's what will be inscribed on my tomb stone: "She waited!" It's all I seem to be told I can do. Feels pretty powerless. I was surprised that he wanted to wean a drug at a time when I think I may be seeing seizure breakthroughs. But it's a very very slow weaning process. And I like that he really wants to get Cody off the meds that never did seem to help much. So we'll see how it goes. I do trust this guy implicitly.

That's the news...thanks for keeping track! Prayer requests would be: a smooth weaning process with Vigabatrin. That tapering this drug won't allow any more seizures to break through and that maybe getting it out of his system might allow for more development to occur. Also for sleep (what's new?) I'm going to try melatonin again tonight. And, of course, that the strange "moments" I've seen are not seizures and that they go away like every other weird movement thing has over time.

With love love love, Shawna

March 11

A copy of my prayer chain email today:

Hello all, thank you if you found time to pray for us! The "odd" moments of fixated stares are only happening every 1 or 2 days. It's a good sign that they haven't gotten more frequent or more intense. Our 24 EEG was cancelled this week. The neurologist hated to put Cody (and us) through the rigors of a 2 day hospital stay when the "odd" things aren't happening frequently enough that we'd be sure to "catch" one on the EEG. If/when they happen more frequently, we'll go in for the overnight EEG - when we know we know for sure we will get one on camera. We'd LOVE continued prayer that these are NOT seizures I'm seeing - but more of his odd movement tics. Some good news is the Dr. feels Cody has outgrown infantile spasms. So if seizures ARE breaking through, they may be a less catastrophic seizure type than his previous clusters and possibly be easier to get control of. So we hold our breath. All babies outgrow i.s. at some point...most often only to have it replaced by a new seizure type. We pray that is not the case.

Some big news is that we're tapering off 1 of his 3 anti-seizure meds...so we'd love prayer for a successful weaning process with no seizure breakthroughs. Basically 2 of the 3 meds he's on now never helped him - it was only the clobazam that may have given seizure control (although we still stick to our intuition that God just healed him.) It's a risk taking him off these meds - but the Dr. feels it's an equal risk keeping him on them because these high powered anti-seizure drugs can create delay all by themselves. Plus, Cody displays a new movement tic every week and we can't keep postponing the weaning process until he's "tic free." Hopefully as we get a couple of the drugs out of his system, our little trooper will have an easier time sleeping, developing, and we'll get to see who the real Cody Graves is! We don't know if his delay is from brain injury due to past spasms, his brain abnormality, medicine effects...or a combination. At 15 months old, he's evaluated to be 7 months mentally and 8-10 months physically. He may re-gain some development, he may not. Only time will tell. That's our latest news. I will post updates on crazyforcody.com every day or two if you'd like to keep up to speed.

As we've stated before, JEHOVAH-NISSI, "The Lord Is Our Banner" is in front of our family leading the way. JEHOVAH-ROPHE, "The Lord Who Heals" is our rear guard. And we know His angels surround us and minister to us every step of the way. May God continue His healing process in our dear little hero.

With much love, Shawna, Don and Cody

March 13

Well, I fear that what I am seeing is definitely seizure activity. I'm fairly certain of it. It's now at least once a day and I can't snap him out of it when it happens. It's about 5-8 seconds long - fixated stare - weird mouth movements. If it keeps up this pace for the next few days, I will call for an EEG hopefully next week. I'm going to a women's retreat this Friday night - Sunday and have been praying nothing emergent comes up to keep me from going. So I hope these "things" stay at bay at least that long. Don, bless his heart, will have Cody alone all weekend (with my 40 thousand page instruction manuel!) This will be a huge effort for me to not worry, fret, call every 10 minutes, etc. Don is SO capable...Cody will be just perfect I'm sure of it. But it will be hard for mommy.

I had my breakdown Saturday night after seeing what I think is the most confirming "weird thing" yet. Had my tears...did my screaming at God...pounded my fists...then put on my pajamas and went to bed. Once again I poured my heart out to the Lord - already assuming the worst and borrowing trouble from tomorrow. When will I learn that tomorrow isn't even promised us? Even the next moment isn't promised. Yet I sprint ahead - assuming that Cody will once again be in a trance - that my life will be a blur of new medicines and their side effects.

Oh Lord, please help me to live only for today - for this minute. If tomorrow brings what I fear...I know you will meet me in it. Please protect my little one. Please mend his brain so these seizures can't break through. Please spare us from the dark hole of more medicine. Amen.

"Ah! What must be His love for those who, in cheerful and absolute abandonment, give themselves completely to be crucified with Christ!" By fenelon

Love, Shawna

March 14

Oh boy - Cody has come down with a terrible cold. Wouldtchaknow. The exact time new seizures are breaking through, he gets sick which lowers his threshold that much more. He won't sleep, won't eat, can't breathe. I am always amazed at how many people infer that I'm overproctective or are offended when I try to keep germs away from Cody. When people walk in our door, the first thing I request is that they wash their hands. If someone's due to come over, I always call first and make sure they're not sick. Many are quite accomodating and are happy to do anything to make Cody's life easier. But more than a few have made it clear that they think this is overkill. But Cody just isn't like most kids. Fevers, teething, colds all lower his ability to fight off seiuzres. He's on anti seizures drugs that keep him up all night already - so congestion and cough make him literally NOT sleep. He already has eating issues because of his dis-coordination from the meds - so not eating because he's sick just exacerbate an already huge problem. And my life is crazy without Cody having a cold...add him being grumpy, sleepless, starved...and it just about pushes me over the edge. Not to mention that Cody's immune system still suffers from months of steroid injections and the risk of him not rebounding from a cold or flu are much higher than most. Yet time and time again I'm met with "yes, Shawna, I have a cold. So now I CAN'T come over????" Or "why do I have to wash my hands when I'm not sick?" The most amazing to me are the people who come over and say "I'm sick but I won't touch Cody." But they don't realize that by touching the faucets, the door handles, the counters, etc... they expose us to the same contagious germs.

Sorry for the vent. But when he does get a cold...I wish those people who have such self centered comments could live a day in our house when Cody's sick on top of all his other issues.

Please pray that he will move through this quickly and that he'd be able to sleep and eat. We just don't need one more crisis right now.

with love and thanks,

Shawna

March 15

This will be quick as I am trying to put Cody to bed. He had a convulsion tonight. He was napping - woke up and rolled over - and his tongue was hanging out of the left side of his mouth and he began quivering/shaking for about 5 seconds. This was definitely "something" - altho I know not what. I am calling tomorrow to schedule a 24 hour EEG because his weird moments are occuring more frequently now. Please please pray for him. I am stopping the weaning of Vigabatrin in case that has something to do with this new convulsion business tonight. Luckily our Life Group was here for our weekly gathering so I rushed Cody downstairs immediately after the convulsion and they laid hands on him, annointed him with oil, and prayed for him. Thank heavens there were prayer warriors in the house because I was pretty undone.

thanks and love, Shawna

March 16

Hi there,

I am going to try to make it up to that women's retreat! It seems like Cody is keeping this pattern of one weird "moment" a day. I have a call in to schedule an EEG and there's not much more we can do at this point. So I'm going to try to release my worries and spend the weekend with my dear friends at the Inn at Semiahmoo near Canada.

Today has been - well - not good. Cody's got a cold, he's not eating or sleeping well. It's 11:20 pm and he's wired. last night he stayed up till 2am. Life is just plum crazy here at the Graves house!

That's about all of our news for now. Love to you all!

Shawna

March 20

Yahoo - I made it to my women's church retreat! Took me 5 hours to drive there - but it was a weekend full of warmth, fellowship, great teaching on spiritual warfare, and re-charging for this desperatly in-need-of-it mom. Don did a fantastic job caring for Cody. I knew he would.

One of my favorite nuggets of spiritual "stuff" from the weekend was remembering that as Christians, we fight FROM victory...not FOR it. I loved that thought. We also were reminded that it's the enemy's goal to steal our relevance to the world.

Perhaps the most profound moment for me was studying the life of Job in the Bible - who had everything (literally) taken from him: His material posessions. His children all died. He was a leper. Even his wife told him to "curse God and die." Yet he is responsible for a scripture that is so very profound: "THOUGH HE SLAY ME...YET I WILL TRUST HIM STILL." Wow. Job chose to trust the God of the universe...even though everything he loved and valued had been taken away by the very hand of the God he served. A faith that defies circumstance. A trust that doesn't depend on 'feeling' but on an act of the will. Though all of our sufferings are allowed by the Lord...do I trust His Word and His promises enough to trust Him even when everything is stripped from me? Do I trust that when the Bible says "He works all things for good" it is actually true? Do I believe that He has a "future and a hope" for me - and for Cody - despite the probable return of these life robbing seizures? I pray God will give me eternal eyes and the ability to trust Him as Job did.

It was a beautiful thing to reunite with these women who I used to see daily when I lived in Bellevue. Although most of them have never met my son, they have wrestled in prayer on his behalf and it was a privelige to hug them and thank them in person.

I came home to the crazy news that Cody needs glasses - on top of everything else! I took him to a genetic pediatric opthamologist at the Casey Eye Institute today to make sure his squints/blinks weren't a big deal. The Dr. said they weren't...but that he does have a stigmatism and needs glasses of all things! It's completely unrelated to his epilepsy - just a quirk of being our son. (Don, by the way, is near blind without his glasses.) He said we could wait 6 months because there's no way Cody would wear them now. This poor little guy can't get a break! He sat perfectly still thru a 1.5 hour eye exam where they put in eye drops, dilated his pupils, poked and prodded him...held various lights and magnifiers up to his eyes...and he never even made a fuss. The Dr. said Cody was absolutely unbelievable - that he'd never seen a 15 month old that was such a great patient! I told him that because Cody's been poked and prodded...and basically uncomfortable or in pain most of his life...that he's just used to it! He's got such an amazing disposition despite all the craziness that has been his life. I was near tears as this Dr and his team made him jump thru all their hoops and he just sat there patiently the whole time. He is amazing. I am so lucky.

We have a 24 hour EEG in the works within the next 3-4 weeks (quickest they could get us in) so that's something to look forward to .... NOT! Haha.

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

with love, Shawna

March 22

Well, this must be quick because Cody's about to have physical therapy. I saw four episodes of what I believe is definitely "seizure activity" yesterday and one so far today. They are getting longer - the last one was about 20 seconds and involved a slow motion head drop and some weird arm movements. I have no doubt that the seizures are returning - but hopefully in a different form than those 5 minutes clusters we endured with infantile spasms.

We have a 2 hour EEG on April 4th and if we don't "catch" one of these then...we'll have a 24 hour EEG on the 11th. We are stopping the weaning process with vigabatrin until then too. Our hearts are broken, as you can imagine. Lots of tears. During these episodes, Cody seems very upset, scared, and confused. We had such a nice 2 1/2 month respite from these horrible things. I feel as if I'm walking back into a black hole of new or more medicines, Dr. appts., EEG's and the like. Before we try any new meds I may give the keto diet a whirl. Lots of decisions to make. Cody already seems less alert - less engaged - less smiley. I pray his smile and laugh don't slip away as they did before.

I know the Lord is in charge - and in the midst of this tornado I do feel Him very clearly. But that doesn't make the pain go away. We covet your prayers as we adjust to this probable return to managing seizures, their side effects, and their damage. Of course we pray that this is momentary - and ultimately that God would just remove all traces of brain abnormality and seizure activity. We also pray for endurance of spirit.

That's all for now. I must take my little angel to his therapy class.

With love, Shawna

March 22, con't.

Well, although I've seen 2 seizure moments today - we did also have a wonderful milestone reached. At physical therapy, Cody took his first independant steps! He walked 3 steps all by himself! He had lots of incentive because they have a ball pen full of colored plastic balls to roll around in. I was so thrilled. The therapist thinks we ought to come in twice a week during this burst of walking to maximize what Cody can accomplish. I'm all for that!

On the downside, he projectile vomited right in the middle of our Home Group Bible Study tonight! Don was holding him and BOOM - just like out of the Exorcist! He'd just eaten a bunch of green stuff so a gallon of green ooze shot out of him and continued for about a 1/2 foot in the air! Never seen anything like it. Guess that's what you get at our house - never a dull moment! Poor little guy. Luckily we were among friends who grabbed the Resolve and went to work on the carpet while Don and I changed our green slimed clothes and gave Cody a bath.

That's it for now - love to you all! Shawna

March 24

I am still seeing "seizure activity" on and off...today it's been 3 times so far but it is milder than yesterday. His head's not dropping - he's just sort of staring and quivering a bit. I am very distressed about deciding what to do next. It involves whether to raise any of his meds in light of this seizure activity. Our neuro says not to...but I've made it my job to 2nd guess him! It drives me nuts but I deliberate about everything far too much. If you are praying - please pray reg. this decision...that God would give me wisdom and guidance toward the right choice. Sometimes I feel the weight of the world on my shoulders when I have to decide what to do reg. Cody's meds. Each choice affects him so much. Ultimately I know God can work with (or in spite of) any choice I make and that is where I find my peace. No one can navigate these waters perfectly...so I pray, research, ruminate...and ultimately make a choice that I hope is best for my little one. So hard tho - and so much pressure.

He had another great day at physical therapy - he is showing small signs that he wants to crawl! And last night he slept for 8.5 hours straight which was wonderful for us. He did get up at 5am which wasn't so great for me...but at least it was after sleeping a long while. Last night I went to Fred Meyer to get some shopping done and prescriptions filled. The pharmacist has always been so wonderful to us and she is leaving in 2 weeks to have her first baby. She's not returning. I thanked her for her kindness and she got tears in her eyes and said "I just want him to do well..." Our eyes locked - as only two mom's eyes can. I teared up and managed to say "I hope...you have a healthy one." I meant it sincerely...and I know she took it as I hoped. It was said from a mother who knows the other side. And I do, so sincerely, hope that she doesn't experience one second of the pain that comes with having a sick child. It's so painful to see pregnant women who are on the brink of a new baby. So full of hope - so full of dreams. I remember being there. I can barely allow myself to think back to those days - or even look at pictures of me pregnant - because it just hurts too much. This is SO not what I wanted, expected, prayed for. It is a nightmare of epic proportions. As I left the pharmacy counter last night - I quickly pushed my cart and looked down at the ground so no one could see the tears stream down my face. I kept walking until I hit the back wall....the shoe department...where I just stopped and breathed. I said out loud, "I can't do this. It's too painful." No one answered. So I decided to go shoe shopping. Haha. Always a salve to any wound. And I now sit writing this in a brand new pair of comfy black leather shoes. They say never to go grocery shopping when you're hungry - but I say never go into the shoe department when you're sad. You'll wind up spending $50 bucks on something you probably don't need! :)

We spent all morning and afternoon yesterday at the hospital having blood work done and meeting with a Dr. of development (who knew they even existed?) We are trying to find a possible genetic or metabolic cause for Cody's brain abnormality. This Dr. was so generous with her time. She complimented me on being so organized (yes...I carry a folder of Cody's medical records with me at all times...compulsive, huh!) Her words meant a lot because it's so rare that a Dr. actually gives you a compliment. I said, "well, Cody is the type of child that inspires a mother to move Heaven and earth." Of course that made me tear up and she so gently stopped writing on her note pad and said "it's hard...isn't it?" "Yes," I said. We just sat there looking at each other for a beat - and I sensed her genuine compassion and admiration for what we're going through. One moment like that with a Dr. who cares erases so many of the other moments with Dr's who are rough, rude, and in a hurry. I was so blessed by her - she even called me later in the day to give me some more info and included "hang in there" at the end of her message. When you see as many Dr.'s as we do...the good ones really stand out. Thanks, Dr. Budden.

I live every day since his seizures have seemed to return with that same forboding..."I can't do this." It never fails that God meets me right there. When we pick up the cross of Jesus and bear it in love for Him, His Kingdom has begun in us. I must be satisfied to carry that cross as long as it is His will. The faithful Giver of every good gift distributes them to each of us with His own hand. And every cross He allows is for our profit. Blessed be His name.

With love, Shawna

March 28

Hi there! It's been a few days since I've posted and Cody's seizure activity is still hovering at about 4 "episodes" a day. They are still driving me mad. And I still don't really know what to do reg. his meds. I will say that I have a peace about just letting things "be" till the EEG at least (April 4th.) Cody had a great weekend and has been pretty happy. However, he is on a hunger strike which is my latest crisis. About 3 days ago he just decided "I will purse my lips so tightly that mom won't be able to get one drop of food through." He used to be such a GREAT eater prior to this - he'd eat kale, avocado, beans...so much healthy stuff. Now he won't even open his mouth for his favorite yogurt. He will, however, grab food off the spoon and smear it all over his head and hair which is lovely. I'm sure it isn't helpful behavioral technique that I laugh out loud everytime he does it. Not great reinforcement but it's so darn cute I just can't help it. I witnessed him being in a trance for so many months from seizures that these efforts at independance and rebellion are a treat and a joy for me - much better than the robot I knew for 9 months! Sometimes his entire head of hair is Incredible Hulk Green and he just looks at me as if to say "what are you gonna do about it?!?" I'm hoping the hunger strike is a control thing - or a phase. The one thing I had going for me was knowing that Cody was getting great nutrition. I'd love prayer for him to be willing to eat again. Right now he's really only willing to take bottles - which at least keeps him from being dehydrated.

I'm told he should be "off" his bottle by now so that's my upcoming project - replacing his bottles with sippy cups. He does sippy cups with meals - so I think it will go smoothly. Then I'll work on transitioning him off formula. He IS behind the times in all this but hey, I've had bigger fish to fry.

I'm excited that he is beginning to crawl - or at least "scoot" which is huge for him. It's a brand new thing that he sees something and moves toward it on the floor. Sometimes he flings himself toward it - but lately he kind of hops on his hands and knees. Great progress! He's shown NO interest in crawling before this. So despite the new seizure activity, he seems to be still progressing and moving forward.

That's it for now - happy tuesday! Shawna

March 29

OH MY GOSH! Just as I wrote yesterday that Cody was showing signs of wanting to crawl...about an hour later I had him on the floor and BOOM...there he went! He is now CRAWLING! This is a total miracle. The physical therapists had given up on crawling saying he "Just isn't coordinated enough." Boy did he prove them wrong! He does a version of regular crawling with a few bunny hops with his back legs mixed in. It's not perfect, but hey, he moves FORWARD with intention --always toward something he can pull up on. His p.t. said that crawling was a real long shot because kids with delay often don't understand that they can "get somewhere" in the world. Their world exists right "where they are." So for a baby to see a goal (the couch) and choose to crawl toward it with the intention of pulling up on it is H-U-G-E!!!!!!! And that's exactly what Cody is doing. So we're seeing that he now understands cause and effect - "if I move to that couch, I can stand" is what must enter his brain. So this is not just a physical gross motor celebration...it is a cognitive celebration as well! Can you tell I'm excited?!? And the most fun part is that it happened literally without any indication. He just started crawling out of the blue. It makes me so hopeful that even tho I see no signs of speech and such, that it IS possible for God to just spur Cody to action without any hints or signs ahead of time. I give God ALL the credit for Cody's crawling extravaganza...He is still allowing Cody's brain to WORK and to accomplish things that were determined impossible. I can't tell you how filled with joy I am - at Cody's continued ability to beat the odds and do the impossible - and at God's grace to surprise me with such a milestone in the midst of Cody's seizures returning. I have been devastated by these seizures coming back but I feel as if God is saying..."don't judge anything by how it looks. I AM. There is no formula for this - I made Cody and I will determine his every step" (and crawl.)

I took a long walk the other day and as I went down our country road...I walked next to a long pasture enclosed in an old wooden fence. There were cows inside milling around. But outside the fence, growing right in the grass within inches of the street were dozens of daffodils. They looked so odd being "outside" the fence and growing wild almost "on" the concrete street. Seemed like they should be in someone's garden...or at least inside the fence instead of outside of the property line. And it struck me that Cody has always been just like those daffodils. He's never bloomed within the confines of what's "normal" .... he's always grown outside the box. I looked at those sweet little daffodils and saw how they'd thrived and grown even though they were within inches of hundreds of cars whizzing by every day. They didn't have a yard or garden ... they were just "out in the open" -- on public property of a city street. Yet they were as beautiful as any I'd seen and had obviously been tended by the ultimate gardener...as God provided just enough sun and rain to give them life. I marveled at the fact that - if God cares so much about wild daffodils - how much more has He tended to Cody as the dangers of life whiz by him. How much more has Cody had to blossom outside the confines of a safe pasture or garden -- but instead has lived in Dr's offices and hospital rooms. Yet still Cody blossoms despite the dangers of living outside the "box" of what's normal. And like the daffodils, he's found a way to live, shine, and burst forth despite his crazy life circumstance. Don't tell anyone, but I picked one of those little daffodils when no one was driving by as a memento - and it is now laying between the pages of Cody's baby book as a reminder of my little hero who continues to beat the odds.

love, Shawna

march 30

As usual, our life doesn't stay uncomplicated for long - after being thrilled over Cody's crawling boon - he decided to throw up all night. I'm asking the moms I know - are any of your kids are going thru this? Cody projectile vomited one week ago today. Then all week he was fine - but has been on a bit of a hunger strike the week long. This afternoon he projectile vomited again, had diarrhea once, and has been throwing up again from 3am on - can't keep anything down. NO fever, tho. Isn't that weird? He hasn't seemed sick or unusual all week -- and even between throwing up shows no sign of illness or distress. Anyone going thru anything similar? Any bright ideas on how to help vomiting? I'm hoping to get in to his ped. tomorrow but she's pretty packed.

Thanks! I may not have time to write back as I'll be on barf patrol all day alone. Please email me from the contact section of this site if you have any clues.

love,

Shawna

March 30, con't

Well, it's 5:30 and Cody hasn't thrown up since 5am. I've managed to get some fluids down him and all his meds so far today. This is definitely not the nightmare I expected. At least not so far. Whew! But there remains a lot to figure out about this little guy - why has he been on a hunger strike for a week? Why does he have eczema all over? What is all the painful gas from? Why has he projectile vomited last wednesday and again yesterday - when he NEVER throws up? I'm looking for anything that might connect all these symptoms...and my primary area right now is looking at food allergies. He literally is up all night a couple of nights a week from painful gas. Of course, kids like Cody are so complex because the meds themselves could cause every one of the things I mentioned above. So could a food allergy. So could stress. So hard to be a detective. I pray consistently that the Lord would reveal Cody's little secrets to me. That I'd get a glimpse into how his little body is coping and be able to relieve at least some of these problems.

He is SUCH a trooper - even when up all night throwing up. He just has been given the sweetest disposition. He never whines or cries...never pitches a fit. He just receives what life has to offer and smiles in between. SO many lessons I could learn from him!

Don and I didn't sleep much last night so we are hoping for more rest tonight - and the weekend always provides time to catch up with naps. We have really become a team. Don had Cody last night and I was trying to get a full night's sleep (we alternate taking Cody overnight every other night.) He came in my room at 3am saying "he's throwing up" so I bound out of bed and there we sat, the 3 of us for the next 3 hours. Don and I would take turns holding him, comforting him, giving him pedialyte, changing his clothes (3 times!) and cleaning up the messes. Not many dads would have stayed up from 3am - 6am when they have to bust into work first thing in the morning and do their stressful jobs. But it didn't even occur to Don to go back to bed...nor to me. We are a team, we three. I am grateful - I know that a lot of moms of special needs kids don't have that team mate in their husband. Every weekend Don takes Cody for awhile so I can get away and have coffee, go to the gym, run errands, or whatever. I try to reciprocate so he can golf, watch sports, mow the lawn, etc. Again...a team effort. Many marriages dissolve under pressure like this...but this furnace of affliction seems to bring Don and I closer as each month goes by. We lay our hands on Cody and pray for him together every night. We touch base a few times during the day. I am a lucky woman and Cody is a lucky son.

We are all still basking in the glow of Cody crawling too. That moment truly revolutionized my walk with the Lord. Seeing that something could happen THAT QUICK - against all odds - made me see how fast God can act when He chooses. Therefore, if the seizures are still here - I feel more peace that if God wanted them gone, they'd be GONE in a second flat. God gets it DONE when He wants to. So if "it" isn't getting "done"...I feel more at ease resting in the truth that IF God wants "it"...it WILL happen. No doubt about it. He hasn't forgotten - he hasn't misplaced our address. If seizures are happening, God is not asleep at the wheel. He can eliminate them in a split second. Just like He made Cody crawl in the blink of an eye. I feel a newfound sense of trust in this trial. Thank you Lord, for showing me how big you are. And how I need to trust that You ARE in control.

that's it for now - must wash some more barfy clothes! with love, Shawna

March 31

Wow - I guess I spoke too soon! We were up all night again last night. Wow - 2 whole nights without sleep. Pardon any spelling errors as my eyes are closed as I type this.

Cody threw up a couple of times last night and spent the rest of the night tossing and turning with a sore tummy. I'm trying to get some fluids down him this morning in preparation for trying to keep his meds in his stomach.

Please pray for wellness - and sleep!

love, Shawna

March 31, con't.

Well thankfully Cody has rebounded from stomach flu and hasn't thrown up since the early morning. He's taking in a bit of food and seems back to himself for the most part. thanks if you took the time to pray! He emerged relatively unscathed - which is quite miraculous given that any cold or stress to his system can amp up seizures. Not this time! Thanks, God!

Speaking of thanking God...we just had 7 Saints leave our home. Seven people from our church who are prayer warriors took it upon themselves (thanks to some prompting by John Leasure - our buddy and Life Group leader) to come over...lead us in awesome worship music...and then prayed for us/with us for 2 hours. We covered every topic from healing Cody, to decisions reg. medicines, to our marriage, to binding up the enemy and casting him as far as the East is from the West (my favorite part!). We feel loved, prayed up, blessed, and rejuvinated for the battle against these new "episodes." We await more miracles from the Lord. We prayed that someday Cody would be able to speak audibly...and that he would be able to praise the Lord with his words. We prayed that our home would be a haven of spiritual protection. We prayed that I would one day be able to look at Cody's baby pictures without such crushing loss and grief. So much ground covered. And to think, these people gave up their Friday night to come here and selflessly pray for us three. Some had never even met us! This is the beauty of a church family. We are truly not alone in this fight. And we were reminded to stand firmly on God's promises for a future and a hope for Cody. I pray that one day we are on the other side of this nightmare and able to use our time so unselfishly. That we can take the comfort we have been given and return it to those who are suffering. Til then, we receive happily. Thanks, God...for a great night.

Shawna

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