Jan. 1

STILL seizure free!  Yahoo.  Altho the neuro braced us that they will "probably" come back within a couple of weeks.  To him, I give a huge raspberry.  We will be shattered if/when they return...and choose not to borrow trouble until/if it happens. 

The left head turns are still plaguing Cody - and are still looking like simple partial seizures.  We have an EEG this coming Friday to determine for sure.  They are fairly upsetting to him and he has bursts of crying about every 10 minutes.  Dr. Chugani said if they turn out to be simple partials...we have to start him on a whole new med...which would be devastating.  The world of seizures is just never simple.  You can get rid of one and a new one will take it's place. 

On top of that, the new med that may have helped him get seizure free is still affecting his eating, drinking, etc.  We're managing to get about 10 oz of formula down him today so that's an improvement.  I spoke with another mom whose child is on clobazam and she will be a fantastic resource.  She said the discoordination does get better but also warned me about things like "stridor" which is wet, labored breathing (which Cody is already showing signs of.)  She said the discordination is the tip of the iceberg.  Don't like hearing that.  But like her, I'll take these side effects compared to those horrible i.s. seizures any day. 

Don and I were in bed as the New Year rang in...but are thrilled to say goodbye to 2005 and hello to a brand new year full of brand new possibilities.  We have a lot to be thankful for - entering the new year seizure free (at least free of the really bad ones.)  The thing we treasure most so far in 2006 is that Cody's smile has returned!  And his laugh!  In fact, he smiles a large part of the day - and has more expressions than we even remembered.  We spend most of the day saying "look at him, honey!"  One raise of his eyebrow sends us into applause...one sly grin melts our hearts.  We have been so deprived of his gorgeous smile that all we do is stare at him and try to get him to laugh.  What fun it is to be a parent.  Nothing compares.  We pray to know our little angel even more as each day goes by - and more and more of his little personality emerges now that the i.s. seizures aren't plauging him every hour.

Please pray that they would never return!  And continued prayer for these potential simple partial seizures...that they would leave as well.  And for the side effects of the clobazam - that he'd get used to it and be able to eat, drink, and function well.

Thanks so much - may the Lord bless your new year - and may you see His fingerprints everywhere.

with love,
Shawna

Jan. 3

Wow - life is SO much different without seizures!  No longer do I dread Cody's naps...knowing that upon awakening he will seize for 5 minutes!  He has his smile and laugh back - and it's almost like he's making up for lost time!  He smiles - literally - all day!  And has giggling fits that are to die for!  I took him to physical therapy for the first time since being seizure free and no one could believe how much he'd changed.  He's more coherent, makes better eye contact, has a personality instead of being a zombie - they were thrilled for us.  I spent the rest of the day just holding him and laughing with him.  What a DREAM it is to see his little dimples once again.  We're still battling the left head turns, but I've been doing some research and think they it may be a movement disorder (of which there are many...who knew?)  They often happen in response to certain medicines.  His little hands and feet are a little clawed up for some reason - and his left hand kind of hikes up at his side at times.  These could also be movement issues.  I've been harping about these things for months and it took me going online and looking things up to even find out there are such things AS movement disorders!  We pray it is that - instead of seizure activity.  We will know for sure Friday.  Don is going with me to have the EEG done - thank you Lord.  I HATE doing those things alone.

He's eating HUGE meals every day and is doing better with his bottle and sippy cup.  We lowered his clobazam so his mouth control is better.  Thank you so very much if you've found time to pray - we appreciate it so. 

We are in dreamland with our seizure free boy...yet I live looking over my shoulder waiting for them to return.  Definitely a faith issue.  "Give us this day our daily bread" - that seems to be my constant spiritual lesson in this.  Don't fret about tomorrow.  Embrace THIS day.  So hard.  I'm so scared they'll return.  Perfect love casts out fear...and it's definitely fear that grips me when I think of his seizures returning.  All the more reason to align and attach myself to the One whose love IS perfect.  Praise Him for this respite from seizures.

As far as what this means ultimately - IF the seizures stay away - then we are left to hope, watch and see if Cody's development picks up.  He would remain on the same combo of drugs that made him seizure free for awhile (a month or so) because you don't want to mess up something good.  At that point we would begin to wean the vigabatrin and zonegran and probably would leave him on the clobazam since that may have contributed to seizure freedom (that, or his fever.)  Once a child is seizure free, the EEG is very telling because hopefully it would normalize - although Cody does have a brain abnormality that may prevent that from happening.  Everything's just up in the air - and our only way to judge how he's doing is whether his development blossoms - and what the EEG says.  His brain abnormaility could get better or worse over time - so we're hoping that it's gotten better since the PET scan & EEG in October.  If not, we hope that he can still develop despite the abnormaility.  Lots of gray area ahead of us - but seizure freedom is the KEY to any hope for Cody to gain in development and dodge retardation.  With the seizures stopped, it's really up to him and his brain.  Some kids remain delayed after seizures stopped, some shoot forward in development.  It all depends on what their underlying brain issue is...and Cody's underlying brain issue is a big question mark.  We don't know if IT actually caused the delays or the seizures.  That's what we're waiting to see. 

Please continue to pray -

with love,
Shawna

Jan. 6

Hello all!  We are 10 days seizure free!!  Today was the easiest EEG experience we've had to date (thank you God) and the neuro spent his entire lunch hour reviewing it with us.  We're THRILLED to report that the EEG showed NO seizure activity!  The Dr. said if he didn't know better, he'd think he had the wrong child's results.  Cody's EEGs have been so grossly abnormal over the last 7 months that it is highly unusual to have one so clear.  It still isn't "perfect" but it is markedly improved.  The Dr. said, "something's happened...I don't know what!"  Meaning, less than 3 months ago Cody's EEG in Detroit showed high seizure activity and hyppsarythmia (fireworks in the brain at all times.)  I said, "do you believe in miracles?"  He laughed and said "this is NOT what I expected."  So it was FANTASTIC news.  The left head turns have disappeared so we don't know what they were - but the Dr. still thinks they were a movement tic of some kind.  If they return, we will do another EEG to determine.

The Dr. attributes the seizures leaving to clobazam, a new drug that I had to beg the Dr. to try.  It was recommended by Dr. Chugani in Detoit but isn't approved here in the states.  At first we thought the seizures may have been zapped by the high fever Cody had over Christmas but the neuro said fevers usually only knock them out for a few days...anything this extended, he feels, has to be from the new drug.

He cautioned us not to pop the champagne cork yet - he only begins to be confident about seizure freedom at about the 6 month mark...so we have a L-O-N-G way to go.  But he also said this is a crazy, unexpected turn of events and that he's happy for us.  Don and I left doing cartwheels in our hearts...but we are highly aware there's a good chance the seizures could return.  It happens more often than not.  At the same time, we don't want to borrow trouble - or negate any miracle the Lord may have done!  IF they return, we will deal with it WHEN it happens.  Until then, we choose to believe Cody is healed from these life-robbing seizures and we will live in gratitude! 

Prayer requests: 
1) THAT THE SEIZURES STAY AWAY!!! 
2) Sleep.  Whether it's a drug side effect or simply that he's having trouble "re-integrating" now that he's seizure free, Cody has a very manic tendency now that makes him flail about, screech, and not be able to sleep.  Could be part of getting used to living without "the busy signal" that the seizures caused in his brain and body.  Please pray for peace and calm for his little body - and for rest - for Cody AND mom and dad!
3) For movement/body issues.  For the left headed head turn not to reappear.  Also, both hands are often  clenched and his left arm often draws up...his feet tend to curl and twist too.  We're seeing a Physiologist next week to figure out what's going on...whether these are movement disorders, tics, or just a reaction to the stress of "re-integrating."  Often epilepsy is accompanied by movement disorders.
4) Development.  Now that the seizures are gone - we'll be able to see whether he will re-gain any or all of his development.  He's currently 6-7 months delayed and has speech, group, and physical therapy. 
5) For his brain abnormality.  The seizures were a symptom of the brain abnormality.  So even tho the seizures are gone - we don't know what continued damage the abnormality may or may not cause.  It's possible that he could live with the abnormality with no problems and re-gain developmentally.  It's also possible that the abnormality could continue to deteriorate his development...even with the seizures gone.  We just have to wait, watch and see.

It's so wonderful to share some good news finally!  I was beginning to feel like people would run for cover when they saw me from the doom and gloom I always have to report.  I will keep you posted on further news.  Thank you for your prayers!

with love,
Shawna

Jan. 10

Still seizure free!  Yippee!  Cody is more and more alert, connected, and happy every day!  Today at speech and physical therapy he wowed them.  No one can believe how much he's changed in 2 short weeks.  I'm a little worried, tho because he is getting a molar in and it's keeping him up all night (two nights in a row now.)  He's crying a lot and in a lot of pain - and in the past teething had a tendancy to double his seizure amounts.  I've given him Motrin, Tylenol, tried everything under the sun...and nothing seems to help him.  Please pray that this bout of teething won't cause seizure breakthroughs.  Teething plus the lack of sleep...not a good combo. 

also - continued prayer for SLEEP would be great - for him and for us!  This is my second day of about 3 hours of sleep and I'm a zombie.  This house really needs to settle down and get into a routine.  Just seems Cody has never slept well.  In fact, I can remember only a couple of nights that he's slept all the way through.  Kids with epilepsy often suffer from poor sleep - so it's not a surprise. 

Despite the teething - he's still SO smiley!  It's like re-discovering my child.  He's beginning to learn cause and effect...in PT he has learned to hit a button when he wants to swing.  He hits it - he swings.  He stops - he looks for the button to hit it - and then gets to swing again.  They tell me cause and effect is the beginning of communication...so we're excited.

That's it for now - thanks for reading! 
Love, Shawna

Jan. 11

Seizure free still.  I LOVE writing that!  But this molar that Cody's teething is driving us mad.  Last night, for the 3rd night in a row, he was up from 1am - 5am.  I am a zombie.  Every time Cody screams from teething pain I fear a seizure will break through.  I HAVE to give this to the Lord and trust Him with it.  I can't bear this constant fear. 

I wanted to share this piece below - it was posted on the online forum I am a part of.  It's all parents of babies with infantile spasms.  But it's really the story of all parents of children with special needs.  Hope you like it.

Love, Shawna

Thoughts of a Mom By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.  I've become an expert at identifying you. You are well worn.  You are stronger than you ever wanted to be. Your words ring experience.  Experience you culled with your very heart and soul.  You are compassionate beyond the expectations of this world.  You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority, a very elite sorority.  We are special. Just like any other sorority, we were chosen to be members.  Some of us were invited to join immediately.
Some not for months or even years.  Some of us even tried to refuse membership, but to no avail.  We were initiated in neurologist's offices and NICU units, in obstetrician's offices, In emergency rooms, in hospital rooms and during ultrasounds.  We were initiated with somber telephone calls, consultations, evaluations, blood tests, X-rays, MRI films, and heart surgeries.

All of us have one thing in common. 

One day things were fine.
We were pregnant, or we had just given birth, or we were nursing our
newborn.  We were playing with our toddler.
Yes, one minute everything was fine.
Then, whether it happened in an instant, as it often does,
Or over the course of a few weeks or months, our entire lives changed.  Something wasn't quite right.
Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs.  Some of our children undergo chemotherapy.
Some need respirators and ventilators.  Some are unable to talk, some are unable to walk.  Some eat through feeding tubes.
Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's.  We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable.
We have educated ourselves with whatever materials we could find.
We know "the" specialists in the field.
We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done,
We know "the" degenerative and progressive diseases
And we hold our breath while our children are tested for them.
Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get
what our children need to survive, and to flourish.
We have prevailed upon the State to include augmentative
communication devices in special education classes
And mainstream schools for our children with cerebral palsy.
We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects.
We have sued municipalities to have our children properly classified
So they could receive education and evaluation commensurate with their diagnosis.

We have tolerated scorn in supermarkets during "tantrums"
And gritted our teeth while discipline was advocated by the person behind us in line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs,
Complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To
Holland" and Erma Bombeck's "The Special Mother."
We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat."
We have accepted that our children with sensory dysfunction
Will never wear velvet or lace on Christmas.
We have painted a canvas of lights and a blazing Yule log with our words for our blind children.
We have pureed turkey on Thanksgiving.
We have bought white chocolate bunnies for Easter.
And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more Baggage than we ever imagined when we first visited the travel agent.  And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always.
We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds.
We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons.
We dream of them planting vegetable seeds, riding horses and chopping down trees.
We hear their angelic voices singing Christmas carols.
We see their palettes smeared with watercolors,
And their fingers flying over ivory keys in a concert hall.
We are amazed at the grace of their pirouettes.
We never, ever stop believing in all they will accomplish
As they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands, as together,
We special mothers and our special children,
Reach for the stars

Jan. 13

I'm requesting some big time prayer for Cody - it is 6:25 am and he hasn't slept all night.  Literally - all night.  This is about the 5th day in a row of this.  Don and I are at our wits end.  Last night Don stayed up with him, I stayed with him the night before.  We are walking zombies.  Don has to carry on a job - and I have to care for a special needs child on no sleep.  Cody just lays awake all night and squeals, cries, screams, laughs...very manic.  Won't stop moving and rolling...won't settle down.  He's got a molar coming in and is constantly upset over that.  I think the pain wakes him up when he tries to sleep and keeps him awake and a bit crazed.  Please pray for sleep for him - during the night.  He takes a couple of naps during the day so he's getting a total of about 4 hours of sleep each day. 

Still seizure free - but I'm so nervous that the pain from teething + no sleep will allow for some breakthrough seizures.  That is a lot of stress on his system which lowers seizure thresholds greatly.

Thanks so much,
shawna

Jan. 14

Cody had a BIG day today!  Usually he just sits in his playpen and claps or rolls around.  Today I looked over my shoulder and voila!  He had pulled himself up and was standing there holding onto the side with a HUGE grin on his face!  I scooped him up and called Don and celebrated.  What fun!!!

Don and I slept a full 8 hours each last night thanks to our buddy and home group leader, John Leasure!  He came over and sat with Cody all night so we could sleep!  No doubt he was frightened by how we looked this past Wed. night with hair standing on end and bloodshot eyes from sleep deprivation!  Thanks, John!  You are a trooper!!!! 

We discovered that Cody is not just busting through one molar...but TWO at the same time.  No wonder he's been sleepless, poor little guy!  Dr. Chugani said the hyperactivity at night is probably also due to the new drug - which he recommended we give in the early morning so hopefully that will help!  We had been giving it to him mid-day.  So continued prayer for sleep and teething would be awesome.  But despite those two issues, we are LOVING our little tiger!  He is so smiley, happy, fun and playful...what a CHANGE!!!!

with love,
Shawna

Jan. 17

Wow - I got a total of 1 hour of sleep last night.  Poor Cody only got slightly more than that.  He just WON'T sleep.  It's that combo of clobazam which makes him hyper + the 2 molars coming in.  I drove him around at 6am in the car to no avail.  He's taken 1 hour long nap all day today.  Poor little guy.  Good news is he's still seizure free.  But I'm so scared this sleep deprivation will allow one to break through. 

Sometimes I wonder if my body will just "stop."  It's been so abused for 8 months.  No sleep.  Caffeine.  Stress.  Yet like the energizer bunny, I just keep on going!  Haha.  Must be God. 

Tomorrow is Don's birthday - his only birthday wish was another seizure free day for Cody.  Our dreams are getting very focused these days!  I'm getting him an hour and a half massage (don't tell...it's a secret) and I got him a T-shirt with the same photo of Cody that you see above with the caption "I love daddy!"  I know he'll love both!  He leans over a computer all day with very little sleep - then attends to Cody with me all night - he deserves to relax.

with love,
Shawna

Jan. 19

Well, Don got his birthday present request yesterday - another day of no seizures for Cody!  He loved his "I love daddy" t shirt with Cody's photo on it and put it over his dressy work clothes and wore it at the office.  Pretty cute. 

Last night was bliss - Cody had his 2nd dose of melatonin (1/2 a mg) which is a miniscule dose - and he slept from 7:45p - 1:30a.  Then he slept again from 3a - 5a.  And again from 7:30a - 8:30a!  Granted, we didn't get much solid sleep, but at least we got SOME!  And better...Cody got some sleep!  I'm hoping that this melatonin continues to do the trick.  We also moved his med dose to early morning to try to have the hyper-ness wear off by night time.  I don't know how much that played a part.  It is so yummy and sweet cuddling with Cody while he sleeps.  He is such a snuggler and sleeps so much better with us than in his playpen. 

This weekend Tina Dugan is babysitting for us and Don and I are going on a "date" to celebrate his bday (Date translation:  a movie)  haha.  Nothing fancy...but going to a movie, alone, seems like a fantasy too good to be true.  To celebrate, I will treat myself to one of those candy bars at the theatre that are about $20!  Haha. 

Cody is having problems eating - I'm not sure if loss of appetite is from the new drug or not.  But he is only eating a few spoonfuls each meal.  We have taken him back to only creamy pureed food because his mouth coordination just isn't up to par from the new med.  I hope he can eat some chunky stuff soon, tho.  Please pray for his appetite to increase and his ability to coordinate swallowing chunks of food without gagging.  At 14 months, it is pretty late to still be on pureed food.  But as usual, Cody goes by no one's clock! 

That's it for now - we are praying for YOU today.

love, Shawna

Jan. 20

Had to share how my sleep deprivation became a comedy of errors yesterday.  Don's sister Maile came to watch Cody so I could have some time to get some of "my" stuff done.  I'd purchased an at home hair coloring kit at Fred Meyer and was excited to hide away in the master bathroom and color my hair!  I applied the product - wrapped my head - waited the requisite 45 minutes, jumped into the shower and used the conditioner they included - got out and dried my hair - only to realize....it looked exactly the same.  It was at that point I looked on my bathroom counter to see the tube that said "dye" still sitting there.  I had only put on the "developer" which does NOTHING without the dye.  One hour of my precious "alone time" wasted.

I hopped in my car to drive to a Dr. appt. in Portland after that.  Half way there, I realized I left my wallet at home and didn't have enough gas to get all the way there and back home.  Turned around and drove the 1/2 hour home...and decided to just save the Dr. appt. for another day.  It was getting too close to rush hour.  Another wasted hour of my precious "alone time."

I then went to Albertsons to try to salvage the time I had left and got Don a balloon boquet and cake.  I walked to my silver Honda CRV
and hopped in - only to see a bunch of strange things inside. I was on my cell phone to Don and said "why is there a bunch of shelving...and someone's name written on a post it note in my car?  Why'd you put this here?"

I was baffled until I heard "excuse me...you're in MY car."  The woman who owned the car I'd mistakenly tried to hijack had been 5 steps behind me with a cart full of groceries and had unlocked her car door with her remote...just in time for me to jump in like an idiot.  I looked at her, then looked over her shoulder at MY Honda CRV sitting across the lot.  I took my dozen helium filled balloons and cake and skulked off.  All I said to Don was "whoops...I got in the wrong car."  I can imagine his eyes rolling and him shaking his head.  Yet another misadventure of his sleep starved wife.  Too funny, huh! 

Well my angel is finally asleep so I will go make the most of his downtime.  We had an awesome day - he was smiley, happy, and took a good 3 hour nap which was sorely needed!  He's pulling up a lot now - I'm so excited!  He's also starting to wear sandals...he's been averse to having anything on his feet (even socks) since he was a baby but the physical therapy people say it's time to get him used to it because he's going to need some braces on his lower legs soon.  Not for constant use - but for when we're working on him standing up.  His ankles and legs are wobbly and need lots of support.  Picture Elvis as a 1 year old gyrating all over...only with Cody it's completely unintentional (at least I hope so!)

love,
Shawna

Jan. 21

We spent all morning and afternoon at Legacy Emanuel - physical therapy and a Dr. appt.  Poor Cody, he is teething so bad that he spent literally the whole hour of PT with both hands in his mouth.  It was completely unproductive.  Once you'd pry one hand loose, the other would snap back in to replace it.  He was miserable.   Then we saw a "physiatrist" (someone who works with movement disorders.)  I'd been worrying about that left head turning that disappeared, plus Cody's tendancy to bunch up his fists and hike up his left arm.  The Dr. said he didn't detect a movement disorder (good news) but I left feeling - sort of - bummed.  This Dr. hadn't been along for the last 8 months so he had no appreciation for simply being seizure free.  Instead, he commented many times about "how much Cody has to overcome" and how "many problems he has."  He recommended leg braces - and adding occupational therapy to try to sort out why Cody seems to roll his ankles and wobble his knees anytime he tries to stand.  It's not that he doesn't have muscle tone (altho this Dr. said he has "low tone") - it's more that he's just not able to coordinate his limbs to work together to stand.

He said that all of Cody's "issues" (meaning his low tone, his uncoordination, his hyperactivity, the bunching up of his hands & arm, etc.) are all kind of a soup - there's no telling what of those issues are from medicine, from the delay, from the brain abnormality, or damage from the seizures.  He said we just have to wait till it all sorts itself out.  I already knew that - but it's always depressing hearing a Dr. tell it in their ambivalent way.  I asked if he thought Cody would ever walk and he said "I don't know.  Not anytime soon."  I hate that.  I want to hear "of course - it will just take some time."  I'm so excited about the freedom from seizures that I guess I forget that we're still up against so much.

But on the plus side, he pulled up to stand in his playpen about 20 times today!  He just grins and grins.  I'll be sitting at the computer and look over to see his little head poking up over the side.  I never get anything done because of his adorable smiles and arms raised up to me - I have to scoop him up and smother him with kisses!  I guess I'll have a clean house once my children are raised...other things are more important just now!

I emailed Dr. chugani in detroit about the insane hyperactivity that seems to get worse by the day.  Cody is almost hard to even hold on my lap now.  Changing his diaper or clothes is near impossible - he is instantly trying to sit up, roll over, grab anything near him, shove things in his mouth, twist and turn...it's crazy.  Dr. C. said it is definitely the clobazam and that a very small subset of people react with hyperactivity rather than drowsiness.  He said it won't get better and said it's up to me to make the call whether to take him off the drug.  He also said we'd stand a strong chance of the seizures returning if we did.  So how's a person supposed to feel good about pulling the drug! 

We want to have another child one of these days and I'm not getting any younger (41!)  Yet just wrangling Cody today I was completely exhausted.  There is no way that I could manage a baby and still carry Cody everywhere and tend to his needs.  Please pray about this hyperactivity that affects his sleep and all of our lives.  It is like trying to take care of a wild animal.  And also please pray for wisdom/guidance/timing regarding having another child.  I fear I just couldn't manage a baby plus Cody...but what a sad thought for Cody to be an only child.  I want him to know the love of a brother or sister.  And what a blessing he'd be to a sibling. 

That's it for now - parden the blue mood.  I am still THRILLED and grateful that the seizures are still GONE!!!!!!  It's so hard not to jump ahead to the "next thing" instead of lingering in this wonderful moment of having my little baby back again.

with love,
Shawna

Jan. 22

Wow - just when I thought the melatonin was working - Cody was up from midnight to 5am.  I'm going to up the dose tonight and hope it helps him.  I am asking people in our area (Clark County, Wa.) to let me know if they know of someone who would want to come by a few times a week for a few hours so I can get some sleep to make up for my night time vigils.  We'd pay the going rate (whatever that is.)  Looking for someone at least college age.  Hours are flexible.  Let me know if someone pops into mind.   

Cody's doing this weird squinting thing with his eyes today that has me concerned.  Any weird eye movements are suspect when someone is seizure free.  I pray it's just lack of sleep. 

My other prayer request is for bodily strength for me.  He's almost 30 pounds and I lift him in and out of his playpen, high chair, car seat, changing table, etc. all day.  Because he's so hyper, the minute I get him in my arms he flails to one side, arches his back, leans completely over the other side.  It's like trying to hold onto an octopus.  My back is just dying and I'm so scared it won't hold up.  Lack of sleep doesn't help w/body endurance.

so there are my gripes!  On the good side, one more day without seizures!  We can always be grateful and thrilled for that.  And Don and I get to go out on an official date tonight to dinner and a movie.  An earthly angel otherwise known as Tina Dugan is coming over for Cody patrol.  And Cody's pulling up all day every day now...we had to put foam padding all around the top of his playpen so he doesn't bash his head on the bars or the plastic corners.  Now we're going to try to find someone to build him a double wide playpen because he's grown out of this one. 

thanks for reading despite my complaints and fluctuating moods!  some days things just "get" to me, you know?  Then when Cody finally takes a nap, I sit and try to re-group like I'm doing now.  And it never takes but a second to overwhelm the negatives with the positives...my little on is seizure free and developing again!  I am the luckiest mom alive.

with love,
Shawna

Jan. 23

26 days seizure free!  Today was great for me - Don took Cody all day and I got to sleep in, have coffee with a friend, shop, take a long hot shower, and spend some time on the computer.  Just what the Dr. ordered.  Cody still manages to stay up 1/2 the night which, despite my day of rest, always makes Monday a hard day.  It's the beginning of another week of sleeplessness I fear. 

But just when I get my complaining hat on, I receive an email like the following.  It's from a fellow mom of a baby with infantile spasms.  These are the league of women I am among - true Saints.  The Lord is for some reason allowing these babies to go through these tremendous trials...and each mom whose story I come to know...becomes a precious, golden, heroic inspiration to me.  HOW CAN I COMPLAIN when someone with a child who has the same condition as Cody is going through the following.  Puts my "troubls" in perspective.  Here is what Gretchen wrote:

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"Dear Friends: I thought you might want to know what has happened
with Jamie.  I wish you all more luck than we have had. On Saturday Jamie had a tremendous infantile spasm set of seizures.  It lasted 50 minutes.  They finally stopped it with two doses of Ativan.  On Sunday night he had a 12 minute grand mal and they had to stop it with emergency medication and has had more than a couple very small tonic-clonic seizures as well. 

Monday through Wednesday Jamie was reintubated (put back on the
respirator)as his left lung was still collapsed and the C-Pap was not improving it.  His left lung collapsed again on Wednesday night.  We met with the A-string of doctors in our usual
round table on Thursday.  Everyone, including us, was in agreement that there is nothing more that can be done for Jameson.  His lungs are healthy, yet he cannot keep them inflated. 

Since our only options were to keep him permanently on a
respirator where he would have no quality of life, or bring him home with hospice . we brought him home.  Jamie came home Thursday night about 7PM.  He is on oxygen during the day, Bi-PAP at night and a nasal feeding tube.  We manage all of these items and will be setting up a schedule with hospice regarding their visits,
assistance and comfort medications.   All of his seizures continue
and have worsened. We feel blessed for every day that we have left with Jamie.  He is happier here at home.  He's had a "real" bath and gets to be held whenever he wants.  He gets to watch "Jamie TV", which of course if Logan (our 3 year old). 

This is a very difficult time for us.  We want as much family time
for the four of us as possible.  We are trying to have some normalcy as long as possible.  We appreciate your continued prayers. 

Our beautiful baby boy is home right where he belongs - with his
family!  Gretchen, Mark, Logan & Jamie"
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Please, please pray for this woman and her family.  I've never met her in person, but we are sisters in suffering through this hideous syndrome.  The Lord brings so many of these Saints into my life...each story more dramatic than the one before.  There is a world full of families going through what we are going through...and when I get to heaven...I will seek out each and every one of them and spend eternity hugging them.  Oh Lord, you have spared us from so much.  Thank you, thank you, thank you for our dear little Cody who can breathe on his own, who needs no respirator, who isn't in the hospital, and is laying peacefully on our bed as I write this.

with love,
Shawna

Jan. 24

We finally had a better night.  Cody slept from 9p - 4a and then again from 6:30a - 8a.  I think the melatonin is working, praise the Lord!  It's really weird going to bed at 9pm...but that is indeed what we do to try to maximize our sleep during the time Cody is sleeping.  For those of you who knew me "before" - you are probably dying laughing at the thought of this night owl turning in at 9pm!  What a difference a year makes!  It sure cuts down on our time as a family - Don gets home from work at about 7-7:30...so we have all of an hour and a half before Cody is in bed and so are we!  Don has the uncanny ability to fall asleep the minute his head hits the pillow while I am cursed with insomnia and have been my whole life.  So........guess who ELSE is trying melatonin!  Haha.  We laid down last night at 9:15 and I was asleep by 9:30!  That's a first!  Usually it takes me at least an hour to fall asleep.  So it's either melatonin or prayer that is helping...or a combo of both! 

Last night I made a huge batch of Cody's morning porridge full of organic whole grains & legumes!  I freeze it in ice cube trays and he gets one little block per morning.  And would you believe I have him eating things like kale, chard, brussels sprouts, and other super greens mixed in!  I've discovered that if I add a bit of yogurt or fruit it masks the taste and he loves it!  I also add wheat germ, powdered kelp, ground up nuts, seeds & nut butters...and it's a super protein bowl of power!  The rest of the day he eats avocado, fruits, veggies, tofu, eggs.  And of course a daily fish oil capsule + a Juice Plus capsule.  All that plus his 24 oz. of formula.  I really feel it's no coincidence that his seizures subsided just about a month after we began this "super baby food" regime.  His little brain is getting great nutrition and I feel really good about what I'm putting in his body to help combat all the toxic drugs!  Granted, it takes HOURS a week to prepare all this - not to mention trying to mash up fresh fruit and avocado every day before his meal.  But at least I will look back knowing I did EVERYTHING I could to help Cody.  That's my motto in this..."no regrets." 

love, shawna

Jan. 25

Well the melatonin definitely didn't work last night!  Cody slept all of 1/2 hour ALL night.  I've got a call in to our neuro to talk about this...we just can't keep this up.  He is a maniac and going insane today.  Not to mention I am walking around in a stupor.  Poor Don has to do the budget at work on no sleep.  Poor Cody is so loud at night that even when we take shifts, the other can't get away from the screeching in our house.  I'm going to go drive him around and hopefully get him to take a nap.  It's noon and he's only slept 2 hours since yesterday.  I don't know how he does it. 

Please pray for rest for him (once more.)  thanks so much,

Shawna

Jan. 27

Whew - Cody slept 7 hours straight last night!  9:30p - 4:30a!  I'm a bit groggy from being up since 4:30 but hey, I'll take it!  And I have a helper starting next week - 3-4 hours two days a week.  Whew...I needed that. 

Cody is making many more sounds these days which is a good sign - lots of "mmmmmmmmmm's" and an occasional "ba!"  We hang on any possible consonant sound as we're just used to him shrieking!  He now cruises AROUND his playpen which is new.  Just over a week ago he could barely pull up to stand in it and now if he's on one end of it and I go to the other end...he shuffles around the rim and winds up staring me in the eyeballs.  So he can walk the circumference of the playpen...yahoo!  Our big chore, acc. to the Dr's & therapists, will be to get him to stand and balance w/out support.  He just WON'T wear shoes so we are working on "de-sensitizing" his feet.  He wears sandals 1/2 hour a day to get him used to them.  Eventually the plan is to work our way to wearing tennies...which will enable us to put leg supports (I hate the word "braces") inside the ankle and up the calf.  In my spirit, I KNOW Cody will walk one day and often when I'm rocking him to sleep I stare out his nursery window and envision him running across our back yard - chasing squirrels - finding snakes and bugs - climbing trees.  Oh what a dream those days will be - and how full my heart will be. 

His wild & crazy movements seem to be turning on and off now.  There ARE times when he's relatively calm, thankfully.  I think it's mostly because his two back teeth are mostly in.  He's settling down just a bit it seems. 

In my quiet time yesterday I ran across the same scripture I taped to my wall 8 months ago:  "and people brought to him allw ho were ill with various diseases.  Those suffering severe pain, the demon-possessed, those having seizures, and the paralyzed, and He healed them."  Matt. 4:24.  I remember staring at that paper I'd taped above my computer every day for 8 months, saying "why???  will these seizures never leave?"  And tomorrow we celebrate exactly 1 month seizure free.  Thank you Lord.  I never thought I'd see it happen.

I'm a little nervous because Cody's having some new eye movements - sort of a blink/squint at the same time.  He does these often thruout the day.  Any and all eye movements are suspect in the world of seizures so we are going in to have them checked out next week.  But it could also be a med reaction - Lord knows he's had his share of weird body ticks thanks to these bizarre drugs!  Please pray that these eye thingies are nothing seizure related.

Also - I posted a few days ago about gretchen whose son Jamie was taken home for hospice.  He has infantile spasms like Cody. Here is the lastest from her since many of you have told me you prayed for her:

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"Jameson is still working hard to hang in there. His breathing is getting more labored and his sound is "wetter". He is still eating through the feeding tube and is on oxygen. He has periods where he is very much awake, but sleeps a lot. We have started limiting the visitors as we have been told that they do not expect Jamie to live more than days and we need some family time. Logan is taking things hard and on top of all of the emotional issues he has to deal with he has still been running a fever off and on. We appreciate all of your well wishes and thoughts, but ask that you consider emailing instead of calling as the phone has been ringing off the hook. This is a very difficult time and ask that you pray to give us the strength to help both of boys through this torturous ordeal.

Your Friends, Gretchen, Mark, Logan and Jamie"
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As you can see, infantile spasms has done much to earn the label "catastrophic syndrome."  If Cody can escape them ALIVE we are thrilled.  The more accounts I read from others whose children have this...the more I feel so lucky to be where we are.  Every single day - every breath he takes - are celebrated in our home.  The fact that he is smiling, standing, learning...are things I'd all but given up hope for.  Thank you Lord - that it seems we are escaping with not just Cody's life - but with so much more on top of that.  Praise Him!

love,
Shawna

Jan. 30

Well - one more weekend passed an no seizures!  however, Cody is still have some strange eye squints/blinks that I worry about.  We are seeing the neuro about them Wed. but I fear another "gee...I'm not sure."  I'm hoping he will call for an EEG to rule out any slight seizure activity.

Cody continues to move forward - he is standing in his playpen (holding on to the side) any time he's in it and is much less wobbly.  He'll hang out with his arm draped over the side for 10 minutes at a time.  I elevated his toy box and put it right next to the pen and Cody loves to reach in there and see what latest toy I've put on top - drag it into the playpen - and have some fun.  Right now his favorite is a Sesame Street Grover puppet with a big pink nose that he loves to bite! 

He had a good weekend but yet again, sleep plagues us.  I had him all night last night and he was up from 1:30am - 3:45 am.  Now he's up for the day at 6am.  Just when his back teeth have come in finally, he is starting to teethe some other place and is more frantic than ever over it.  I wish teething could stop for just ONE day!  He literally has both hands in his mouth all day and in his sleep. 

I've now moved from making and freezing his baby food to making it all fresh every meal.  Quite a bit of work but fresh food is so much more packed with nutrients than frozen.  I spent much of the weekend buying new kitchen gadgets and grocery shopping. 

THe following is from Gretchen, the mom of a child with infantile spasms.  If you've been following her story thru my posts - here is the latest:
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Jameson Allen Bates, of sound heart and soul, died
Sunday at 4:33pm.  He was comfortable in his own
home surrounded by his parents and brother.  Our
love for this child extends beyond today and the
grave. He has enriched our lives and given depth to
our spirits that we never knew could happen.  We
hope that he has taught others that "normal" doesn't
have to be the norm and that "special children" can
be every bit as important in people's lives and
hearts.  He has taught us more than we could ever
hope to learn about the human spirit and loved more
purely than we knew was possible.  He asked for
nothing, but gave much.  He loved always.  He is
loved always.  His loss is greatly felt.
 
Jeremiah 29 - "For I know the plans I have for you
says the Lord.  Plans for welfare and for good and
not for evil.  To give you a future and a hope.
Then you will call upon me and come to me and I will
hear you.  You will seek me, and you will find me
when you seek me with all your heart." says the
Lord.

Jamie was 19 months 4 days and 11 hours old - In
death Jamie gave "The Gift of Life" to other
children by being an organ donor.  We will notify
you by email of the arrangements once they are set.
Please do not send flowers.  As Jamie-Doodle's final
legacy we would prefer memorials in lieu of flowers.
We will send more information on a fund being set
up to help other special needs children on his
behalf as well.

Thank you for all of your diligent prayers, thoughts
and love. 

Gretchen, Mark, Logan and especially Jameson
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Once again, my heart is filled with gratitude that Codys sufferings never took him from our arms.  He is with us - and whatever we still have to face - it pales in comparison to what so many others go through.  The Bible speaks very plainly about sufferings - that we will know them in this world - but it adds, "take heart...I have overcome the world." 

with love,
Shawna