May 26 

Hello - sorry this is short - but I'm on the run. Cody had 6 seizures so far today. We started at the pediatrician and worked our way to the E.R. They've admitted him to the hospital overnight - Don and I are staying with him right now. They did a CAT scan which was negative so that points to no tumors or such in the brain which is good news. Tomorrow a.m. they are bringing a pediatric neurologist to the hospital to do an EEG which looks for neurological defects. His blood work is good.

Very scary altogether. They are all taking this very seriously as he is just 6 months old (today!) I'm requesting prayer for him - that the seizures would go away!!! They are plaguing the little guy and the worst one was 5 minutes long. He shakes, his eyes roll back, his head jerks to the right and he crunches up his stomach...he does this about every 5 seconds till the seizure is over.

this is a total shock - it started this morning. We don't know why. Any prayers would be so coveted. He'll be fine, I'm sure...but it is awfully scary.

My communication may be limited the next day or so - but if anything changes drastically, I'll do another email. Till then, no news is good news! Love you all and thanks so much for your prayers!!!!

shawna and don (and Cody!)

 May 27

Hi everyone,

thanks so much for your prayers. our little one has been thru so much since birth - it's hard to believe there is so much more piled on top now. We will be in the hospital at least until tomorrow if not more. He's having about a seizure every hour now - terrifying. He had an EEG just now (electrodes on his poor little head - he has scabs all over his scalp now and bruises cover his little arms from blood draws.) They didn't want to sedate him for the EEG so they just let him cry himself to sleep so he could be perfectly still. It was torture. he cried for 2 hours - with an electrode helmut on and wires wrapped all around his face. i almost lost my mind.

So my first prayer request is for endurance for him. He's such all little champion. a trooper. My heart is breaking watching him, tho. We meet with an infant neurologist to discuss the EEG tonight. Noone knows what's going on. he hasn't been sick or feverish - no immunizations or drug reactions. it's a mystery. but they won't let us go home until it's figured out. Yikes. we take turns watching him all day and night because when he has a seizure, Don has to time it and video tape it and I have to run and get the nurses to observe it. So needless to say we didn't get one minute of sleep last night. Crazy!

That's all I know now - no headway, really. hope to know more after the neurologist - but they say there's a good chance he will come up dry too. please pray for discernment for the Dr's - esp. the neurologist - and for an answer to our little guy's problem.

for now we can't have visitors cause he's having such a hard time - so your prayers are the most appreciated thing! We may transfer to the children's hospital in Oregon tomorrow to run further tests and get more specialists.

But God is good and we are hanging in there. i'm surprised at how i'm able to watch him without falling apart - must be Him in me! it's truly something no parent should have to endure. how our heavenly father must ache when he sees us suffer. a glimpse into the holy things of life - that's what i'm getting.

All for now - thanks again for your wonderful prayers - we feel them!
Shawna and Don and our little hero.

May 28

Hello again - two emails in one day - but desperately need your specific prayers now that we've met with the neurologist. We found out that Cody's EEG showed he had seizure activity all the way through the 2 hour test. His brain activity is constantly erratic. Today he sat in his crib in a trance. He won't eat or sleep. I am beside myself. We have an MRI tomorrow hopefully. He has multi focal epilepsy. The Dr. said his brain is so erratic that he can't shut down to sleep or eat. They started him on anti-seizure med immediately to stop them. He will be on that med at least 2 years and the side effect is that he will be a bit dazed and lethargic over those 2 years. Just when his little personality was bursting forth too.

The big deal is finding the cause. The MRI will tell us whether it's a chemical imbalance vs a structural abnormality. He's having tons more blood work which will reveal whether it's genetic or metabolic.

The best way to describe a very complex situation is this: There is a 60% chance that this med will control the seizures and problem solved. There is a 70% chance that we'll have to add another med to this one to control them. There is an 80% chance that a third med will be needed to stop the seizures. The other 20% is the bad news...he could have a tumor or malformed part of his brain...or worse. The Cat Scan ruled out any big structural abnormalities but there is still lots of room for smaller tumors to be floating around. The Dr. said he's likely seizing all the time to some degree - hence the all day trance when he's not convulsing. I asked the neurologist how he'd feel if he got this news about his child cause I wanted a gauge of how serious this is. He said "devastated." Gosh, the guy doesn't mince words.

All that to say - little Cody is in trouble. Please pray that the seizures stop tonight with the med. Please pray that the MRI will show nothing drastic. Please pray that he'll be in the 60% instead of the 20%. We are facing at least 4 more days in the hospital so prayers for Don and I would be great too. Our little one is a stranger to me right now - and he's about to get poked, prodded, jabbed...and sedated completely for the MRI. I am scared to death. He's got wires & sensors attached to his toes, an IV sticking out of his little hand, cuts and scabs all over his head from one of many EEG's to come, bruises up and down his arms from needles. I honestly don't know if I can do this. You're catching me at a bad time cause I just found out a half hour ago - so please forgive. Sorry I can't answer you each to say thanks for your sweet emails and calls and sentiments. I don't know when I'll get back to anyone but will keep you posted via email.

so much love to you,
Shawna, Don and Cody 

May 29

Hello...
Yesterday we were moved to a Children's Hospital in Oregon - we were transported by ambulance and I told Cody that someday he'd be the coolest kid on the playground when he'll get to declare "did any of YOU get to ride in an ambulance with the siron running when YOU were 6 months old??" I know someday he'll think that's really neat-o. When we got to the hospital the parmedics let us linger outside for a few minutes and Cody got to let the grass tickle his toes and he got to look up at the sun - we almost felt normal! We hadn't seen the light of day for 4 days.

His MRI this morning was clear! That means no tumors or deformaties in his brain which was great news. Now we are waiting on his blood work (2-4 weeks...ugh) to find out what might be causing the seizures and the scary part is that lots of those issues aren't fix-able (enzyme problems, chromosonal issues, etc.) They would just point to permanent developmental problems. Please pray these tests are negative! They scare me to death.

Our main focus till then is stopping the seizures. The phenobarbitol isn't working so we are switching to depakote. Please pray this new drug does the trick. The Dr. now says these are "infantile epileptic seizures" which are very difficult to stop. The good news is that they typically only happen in infants and cody could grow out of them.

another prayer request is ease here at the hospital. Today his IV came out a little and filled up his hand and arm with fluids under the skin so they are swollen up like Popeye and very painful. Things like this just keep happening. His brain scan was lost at the other hospital so they have to re-do it and it is a very painful procedure.

We don't know when we'll be home - and we can't have visitors cause Cody is on 24 hour seizure watch. We are leaning on God and feel His presence in big and small ways. As Cody was wheeled into the operating room for his MRI, I had the stretcher lined with his stuffed animals from home. As the Dr. picked him up and walked away, I ran after her and asked if she could please make an exception and handed her his musical teddy bear to take with him. I said the music might comfort him as he was anesthetized. She took it and said "you're a good mom." I cried like I've never cried before. Her words were so kind because I feel so helpless as a mom. There's just nothing I can do but pray and wait...and find small ways to comfort my son. Life is crazy.

love love love to you,
Shawna, don and cody-bug

May 31

Hi there loved ones.

We had devastating news today. We are on day 7 at Legacy Emmanual in Portland and finally got a firm diagnosis from the neurologist. Cody has infantile spasms (a kind of epilepsy). To sum it all up - they are very hard to get under control - he is still having seizures and tonight is as floppy as a ragdoll. He is vacant and staring. It is scaring us to death. The Dr's give him a 40% chance of being a "normal" person without any problems and a 60% chance of retardation. And those statistics are good compared to most kids with this syndrome.

It bodes well that his MRI & CATscan were clear and that he showed no signs of developmental delay going into this. But basically infantile spasms has a very high prognosis of retardation. Here's what the literature says: "Children with infantile spasms represent one of the greatest challenges in pediatric neurology. The majority of patients with infantile spasms suffer a poor outcome. Difficulties often include chronic epilepsy , mental retardation and other nerodevelopmental disabilities. Some reports say severe to profound mental retardation occurs in 70-90% of patients. Others say 95% of all children with i.s. become retarded. Other deficits such as cerebral palsy may be seen in about 30-50%. Children who developed normally up until the onset of seizures often begin regressing developmentally when seizures begin."

They started him on steroids today to stop the seizures - it is the 3rd drug they've tried. I don't have time to write much more. Needless to say, we've been crying for a day straight. PLEASE please pray for cody - he just isn't doing well and needs to stop seizuring. Then, please pray for him to be healed. I couldn't bear to see my little Cody bug regress before my eyes. We are dying inside. He is the most precious gift and so desperately needs your prayers.

With love and thanks,
Shawna

June 1 

Friends,

First, of all, I am blown away and touched beyond belief at the emails and prayer support you all have given us. I could choose no better friends to walk through this crisis with. Thank you for standing in the gap for our family. It means everything to us.

Little Cody is doing much better today - he kind of snapped out of his "trance" by this morning and even managed a couple of smiles today. Last night got so bad that they needed to insert a catheter and altho he was wide awake, he didn't even blink or flinch...he was totally checked out. SO scary. Today he woke up a bit more spry and got better thru the day. He even watched 'Toy Story' on dad's lap for awhile.

The neurologist is worried about last night and so we are now in the midst of a 24 hour video EEG. They attached 27 sensors to his head (after rubbing the skin bare on his scalp with exfoliant) - and literally glued them on with a glue gun!!!!!!!!!!!!!!!!!!!!! It took them an hour and he screamed like a wild animal the whole time. THe worst part is that Don and i had to take turns holding him down. It is beyond your wildest nightmares. His little body is dwarfed by sensors and wires attached to his head winding their way to an EEG machine. the hope is to see how much and how often he's having seizures...and to see what his brain does when he goes into these trance like/floppy states. He's such a trooper - he is my hero.

He is still having seizures - altho they are lessening. Day 3 of steroids is hopefully when the drug really kicks in and we are on day 2.

We had one bit of hopeful news - the neurologist elaborated on Cody's odds of being "normal." Yes, there is a 40% chance of complete normalcy...but about another 10% chance for minor developmental delays and maybe even up to 60% chance for delays that would still allow him to life a full life. We were thrilled to up the odds - but as my friend Kat says, "God laughs at statistics!" I agree - and I do tend to focus too much on them right now. Stats are the language of medicine and I'm trying to remember that Cody is Cody...and his journey through this will be his own...and he will turn out exactly the way God intended. I've already heard from one woman whose child beat the same odds and is a happy 2 year old toddler. I am feeling more of the 'eye of the tiger' where this disease is concerned and am trying to affix myself to believing God for a full recovery.

We are here for who knows how long - but still can't have visitors other than pastoral care. Specific prayer requests: For Cody to continue to gain back ground against this 'trancing out' and lethargy...that his development will progress visibly instead of regress. That his little personality will emerge again instead of seeming so vacant. And of course, ultimately, for complete and total healing. Finally, for ease here at the hospital with blood draws, EEG's, dealing with Dr's, eating issues, and general crying fits that he has after his seizures that last for hours.

THANK YOU again for reading this and caring. We are the parents of an angel. His bravery and courage are preparing him for big things in the world (and me too...)

much love in Christ,
Shawna