Oct. 1

Hi there - we got some GREAT news Friday.  Six months ago I was told by Cody's pediatric neurogenetic opthamologist (how's that for a title!) that he needed glasses due to a stigmatism.  He told us to come back in 6 months cause obviously cody wouldn't have kept on a pair of glasses at 18 months.  So we went back for his 6 month exam Friday and after 2 hours at the Casey Eye Institute, the Doc said, "well, his stigmatism hasn't gotten worse and his eyes look fantastic....I don't think he's going to need those glasses after all."  WHEW.  I was dreading the thought of keeps specs on my little octopus.  We go back in a year to re-check.  Thanks, God!!!

Things are - odd - seizure wise.  We're weaning the klonopin which made his seizures double not long ago.  He's still teething and he has the worst case of reflux on the planet from all the fat in the diet.  So he's on a hunger strike - literally won't eat a bite of food.  The lack of eating has driven his blood sugar down and for the last few days he's only had 4-5 seizures a day.  Weird.  MUCH better than the 12-15 he was having a week ago.  So we'll see.  The ketogenic dietician says it could be a good sign that once the reflux and teething are under control, perhaps the diet will actually do him some good.  There are so many darn variables -- it's just a day by day wait to see how each day will treat us. 

Don and I had a great date night last night - dinner and a movie.  We looked at each other and said, "now what's your name again?"  haha.  So many couples divorce who have special needs children - we are determined NOT to fall into that trap. 

Happy October -- I just love this time of year - changing leaves, brisk autumn air, pumpkins and harvest.  Definitely my favorite time.  Enjoy.

with love, Shawna

Oct. 2

Wow what a rough morning already.  By 8am Cody had two of the worst seizures I've ever seen.  It's so hard when I think things are turning a corner - like the last couple of days - then BAM you see something worse than ever.  I just feel helpless against these dreaded seizures.  I literally cannot do one more thing - I am doing every single thing possible.  He's on the keto diet, he's on a drug.  I'm emailing the neuro 3 times a week - I'm emailing my neuro in Detroit for 2nd opinions.  I'm researching, cooking up new recipes, making new menus, asking about new drugs, managing all his weird behaviors.  There's just not one more thing I can do for him.  I laid in bed with him after the 2 seizures and once again gave him over to God's hands.  "Lord, I can't fix this.  I am at the end of everything I can do.  He's all Yours now.  You are the only one who can stop these.  I surrender Cody and these seizures to You once again.  You know they stop my heart from beating in my chest every time I see one.  Every seizure brings fresh heartbreak.  I am at the end of my rope and have no resources left at my disposal.  I'm tired of fighting these.  I give them to You."

Feeling devastated, I grabbed my latest read, "A Step Further" by Joni Eareakson Tada.  She wrote,

"The Bible tells us our God is so trustworthy that we are to throw our confidence on Him, not leaning on our own limited understanding (Prov. 3:5).  God has already proved how much His love can be trusted by sending Christ to die for us.  Wans't that enough?  What a low view of my Master and Creator I had held all these years!  HOw could I have dared to assume that the almighty God owed me explanations for my suffering?  That's why God tells us in the Bible that we are to set our hearts on Heaven.

Samuel Rutherford described it this way:  'If God had told me some time ago that he was about to make me as happy as I could be in this world, and then had told me that he would begin by crippling me in arm or limb, and removeing from me all my usual sources of enjoyment, I should have thought it a very strange mode of accomplishing his purpose.  And yet, how is his wisdom manifest even in this!  For is you should see a man shut up in a closed room, idolizing a set of lamps and rejoicing in thier light, and you wished to make him truly happy, you would begin by blowing out all his lamps, and then throw open the shutters to let in the light of heaven!'

That's just what God did for me when he sent a broken neck and paralysis my way.  He blew out the lamps in my life which lit up the here and now and made it so exciting.  The dark despair which followed wasn't much fun.  but it sure did make what the Bible says about heaven come alive.  One day, when Jesus comes back, God is going to throw open heaven's shutters.  And there's no doubt in my mind that I"ll be fantastically more excited and ready for it than if I were on my feet.  You see, suffering gets us ready for heaven."

That helped put things in perspective for me.  I will try to keep my eyes heavenward today - and I will ignore the chains that bind me here on Earth.

love, Shawna

Oct. 3

Hi all,

The last two days were pretty rough - harder seizures - altho still hovering around 6-7 a day which is better than 20.  He's been up till midnight the last few nights which is DRAINING to say the least!  He is such the energizer bunny. 

He still won't eat a bite of food...reflux hurts too bad.  I've had 2 calls in to the gastro Dr. over the last week and still no answer as to whether I can up the dose of prevacid of not.  But that's my hope - to raise the dose and give him some relief.

I have to tell you, every time I start feeling sorry for myself (and us) - I log onto http://www.youtube.com/watch?v=ryCTIigaloQ and I can't be in a bad mood for long.  It's a father whose son has severe CP - but the father refused to let that be a prison sentence.  He started doing triathalons WITH his severely handicapped son in tow (at the son's request.)  Now the dad's gotta be in his late 60's and they're still doing it.  I LOVE that.  So often I feel like our lives are over.  Like all we'll do is battle seizures, delay, behavioral issues....forever.  If I got caught up in the prognosis, I'd get all caught up with "how will I change diapers for an 18 year old?" and questions like those.  It begins to make you feel hemmed in..."stuck"...with no ability to "dream" about the future.  But one look at this video and it makes me realize that even the constraints of severe handicap can't squelch the human spirit.  That life can be abundant and joyful and triumphant even in the face of cognitive and physical limitations.  

love, Shawna

Oct. 6

Hope is a weird thing.  I hang on to it...it keeps me alive.  For instance, today Cody had 4 seizures and it was 7pm.  For us, this is a great day.  Every day when I wake up, I begin 'the count.'  The "seizure toll."  I hate this.  Whether I have a good day or not is based on how many seizures Cody has had thus far.  I wish I could say I could rise above this way of living...that somehow I'd be joyful despite the number.  But alas...I seem to live by it.  So the number 4....by 7pm....gave me hope.  "Maybe this is going to turn around!  Every other day this week he's had 6 or 7 seizures but maybe today we can escape the day with only 4!  After all (my head spins) it's almost his bedtime!  Wow....if he could go to bed with only 4 seizures...maybe tomorrow it would be 3!  Maybe the diet's working!  This is really unusual!"  And then my sick mind starts to fantasize about popping open the bottle of champagne that we had in the hospital room the day he was born.  We had 2 bottles that day, one we opened and toasted to Cody's arrival.  The other we put away for a special occasion.  I've saved that bottle and it sits on my kitchen counter in full view.  The cork is waiting to be popped when we are seizure free.  It usually mocks me as I walk by on days when we've had 10 or 20 seizures.  But today as I do the dishes and stare at it, I mock it back, "you may not have long to live, Mr. Champagne bottle!" 

Then I go upstairs where Don has rocked Cody to sleep.  Don informs me that he's had 2 seizures back to back.  The last one was very violent.  In an instant, my heart is sunk.  my shoulders droop.  And I tell myself silently...."don't ever hope again.  it's too far to fall.  if you never hope, you'll never be twice as disappointed."  Back up to 6 seizures for the day which makes this one more typical day.  I'm so used to this cycle.  I SO need to stop measuring my day by numbers of seizures.  But it's so hard.  So hard to keep going.  So hard to acknowledge that with a diet and a drug on board....things are still horrible.  So tomorrow we start all over again.  Hoping for a better day, even though I tell myself not to hope for too much.  Hope is a weird thing.  I swear we'll pop that cork one day.  That champagne will be opened.  And my child will know what it's like to go ONE day without a seizure.  That day IS coming.  I may crash harder every time I belive that and am let down - but so be it.  Is hope that much different than faith?  For me, not so much.  I hope in the Lord.  I have faith in His goodness.  I feel inherently in my spirit that things must change.  Things will change.  And until they do, I hope on.   

love, Shawna

Oct. 11

Things remain the same here in the Graves house.  Lots of seizures.  Very little sleep.  But one change is that he's finally completely weaned off the drug we tried most recently:   klonopin.  The lsat 3 days were brutal as we took him off completely.  Yesterday was 15 seizures.  A whopper of a day.  Today there's been 3 by 1:30 pm.  Considerably better so far today than the last 3 days. 

So now we have only the diet to contend with - although I'm asking our neuro if it's time to try another drug....or hold off.  It just doesn't feel right to let him have so many seizures daily - feels like we should be doing something more! 

We'll give the diet about another month before we pull the plug.  His teething and reflux have kept the picture too cloudy.  We're hoping for a time when those two things aren't so bad so we can see what this diet will do. 

I've had a friend come over a couple of days a week for a few hours each time and boy has that helped.  Just to give me time to breathe and shower and run a few errands.  I'm going to women of faith this weekend at the Rose Garden which I'm super excited about.  Last year I was really impressed.  The women who spoke had really each been through so much in life - they had instant credibility with me.  One was infertile.  One was in her 60's and never been married.  One had lost a husband.  One struggles with depression.  Many women who've made it through many desert times - and came out on the other side to live abundantely.  That's what I want to do. 

I'm searching for a particular Halloween costume - I think it would be a stitch for Cody to be Tiny Elvis.  I've seen the costumes online but none in the stores.  I'll see if I can round one up.  He's got the perfect wobbly legs to imitate Elvis!  Ha.  I just love this time of year - LOVE getting dressed up in costumes - love trick or treaters.  Love carving pumpkins and going to pumpkin patches.  I remember Halloween 2 years ago - Don and I sat on the porch handing out candy and I was as big as a house...pregnant with Cody.  Little did we know what lay ahead.  This is a sentimental time of year for me - Cody was born on Thanksgiving weekend and I'll never forget that anticipation.  It's still so hard to look at his baby pictures - hard to remember those days.  He was perfectly normal then...not a trace of a seizure.  We had the world by the tail.  So much has changed - now we live in the vortex of seizures, hospitals, diets & medicine, therapy sessions...gone is our "normal" little baby.  He vanished.  Yet I wouldn't trade Cody "as is" for the world.  Every smile brings fresh joy.  Every giggle gives me the strength to go on.  Every time he falls asleep in my lap makes me glad he was born.  Someday I need to tackle those baby photos instead of hiding them from sight.  I know God will heal all of my memories and make them bearable.  But for now we live in a world of "before and after"....before seizures and after seizures.  I guess the ultimately perfect costume for Cody for Halloween would be a Knight.  He is the greatest warrior the world will ever know, I'm sure.  Each day is a battle that he wins.  He and I, side by side, with our invisible shields - slay millions of dragons.  I just coulnd't love him more.

Shawna

Oct. 13

I feel guilty.  My day's been too easy.  I'm not used to this!  Cody woke up at 9am (miracle that he slept so late).  He's only had 2 seizures today (as of 4:30pm) and he's taking a 3 hour nap right now!  I haven't had this easy of a day in months!  I PRAY this is a turn...altho I know better than to count on anything as life turns on a dime around here.  But I've looked up and thanked the Lord several times today for a breather.  NOTHING against parents of typically developing kids....but if life was this easy all the time....I think I'd have 10 kids!  A 3 hour nap makes me feel as if I've had all day to myself.  And 2 seizures seems like a trip to Disneyland.  On top of that, I get to scoot out for the evening and all day tomorrow to Women of Faith at the Rose Garden Coliseum in Portland with my buddy Tina.  I'm sure the conference will have tons of great moments & lessons....plus to have that much time to chat and hang out with Tina....I may explode.  Or at least spontaneously combust. 

I've had time to write Don a five page epistle of instructions while I'm gone.  Poor guy has to make all the ketogenic diet meals himself - which is quite a task.  I left all the measurements along with all the supplements that need to go with each meal.  Good luck, Don!  I told him as long as Cody is alive when I return, I'll be happy.  Actually, daddy's quite good with the Code-man....they are quite a team.  It's easy to leave Cody in Don's capable hands.

Finally, Cody started 'listening therapy' yesterday.  This is quite interesting - he wears headphones twice a day for a half hour each time.  And they are attached to a CD player that plays specially modified kids songs.  The idea is that this music makes his ears "work".  His ear has to reach for the highs & lows...and the way the music is formulated is supposed to help his whole vestibular system coordinate itself.  The vestibular system is basically the whole harmony of the body - how the ear works with the brain and the limbs to balance...how the senses integrate with the brain and ears to process information and such.  And he actually sits there with the headphoens on without trying to rip them off for 30 minutes!  He LOVES it.  There are many testimonies of parents whose children have calmed down, walked better, eaten and slept better.  I'm hoping for the same.  I'm also hoping it might help Cody de-sensitize to sound since his seizures are noise induced.  We'll see.  He's done great today after 4 days of pure hell...tons of intense seizures.  So whether it's this listening therapy helping our - or God - or getting off the drug - or some combination of the three - we'll take it!  Listening therapy is kind of hard to find - but we tracked down a therapist at Legacy Children's Hospital that is trained in it.  So Cody will listen twice a day for 4 weeks and if it's working, we'll keep going!  

That's my news for now.  Gotta get dinner in my little one before I leave for the conference.  Thank you God....for such an easy day.  I needed it.  

love, Shawna 

Oct. 17

Wow I had a GREAT time at Women of Faith!  16,000 women in the Rose Garden all raising their hands and praising God in unison!  The worship was great and the speakers were awesome too!  Robin McGraw spoke and her hubby Dr. Phil surprised the crowd and stormed the stage!  If you know me at all, you know I LOVE Dr. Phil!  I was in heaven!!  He said that they've put the Lord #1 their whole lives and that they try to find every opportunity they can to highlight that Truth on the Dr. Phil show.  His wife said many times that her life changed when she accepted Jesus Christ as her personal Lord and Savior - they seem like the real deal!

There were tons of great speakers - each recounting struggles with everything from depression to bullemia to lost spouses to a baby born with spina biffida who passed away after 15 days.  That broke my heart most, of course.  Sandy Patti sang her heart out.  What I appreciated most is that all of the speakers and singers have been through a TON of trials in their lives - yet they still stood up there and they have survived.  It gives me courage knowing that others have gone before me and have run the race without giving up - even races filled with grief and hardship.

Cody continues to have his seizures but they have at least come down to about 5-8 a day from his high of 15 about a week ago.  Whew.  His listening therapy really seems to be impacting him.  He's doing much less eye poking and less of his "masturbatory" behavior.  So I'm keeping my fingers crossed that this therapy will open some doors for him to calm down. 

Well that's it for now - love to you all,

Shawna 

Oct. 19

Well I just decided that Cody's going to be a cowboy for Halloween.  My decision was based on two things.  1)  The tiny Elvis costume had to be ordered and mailed and it wouldn't have gotten here on time (which is a shame because I'd found tiny Elvis glasses with attached lambchop sideburns!  Obviously the costume is shooting for Elvis' latter and fatter years.)  2)  We had all the cowboy stuff on hand and if Cody has a seizure right before it's time to dress up, we'll have to scrap the plan and let him sleep it off.  So the less effort I put into a costume, the less disappointing it will be if we can't go after all.  He has a party at his therapy school saturday that I hope he'll be up for.  He even has a lasso!  Should be cute.  I wanted one of those adorable furry critter costumes but sadly, at two years of age he's outgrown all the kiddy outfits and is now wearing a 5T.  He's H-U-G-E!!!! 

His seizures have spiked again, darn it.  His teething has kicked back up - not sure if it's his final molar (please, God, please!) or just the 3rd one finishing it's reign of terror.  I have never heard of a child SO over wraught by teething.  I can't wait till it's DONE! 

We continue his listening therapy and it does seem to be calming him a bit still. 

That's about all the news from here....thanks for checking in on this rainy Northwest day!

love, Shawna   

Oct. 22

Hi there - would you belive i got a summons for jury duty for the whole month of December?!?  I bout died laughing.  Of ALL people to get called....I do.  I had Cody's pediatrician write a note of exemption based on Cody's medical needs but the court told me they are getting very strict on letting people off the hook!  I've got my fingers crossed.  There is NO way I could be on a jury and leave him with someone else for that long a time. 

Yesterday was Cody's big Halloween party at his therapy school.  I got his little cowboy outfit ready complete with "Cowboy Cody" written on his black cowboy hat.  I also found him a holster with two shiny silver play guns in it.  The belt hung low on his waist and the guns hit him right at his hip....just the spot you want them if some varmont sneaks up on you and you have to pull the trigger real fast!  Haha.  He also had a western shirt and jeans.  The piece des resistance was the curly mustache I was going to draw on his upper lip.  But wouldn't ya know - he had a  HUGE seizure right before we got in the car and it knocked him out.  This was the biggest seizure I've ever seen and it scared the heck out of me.  So I sat down with my limp little cowboy and had a good cry as he slept in my arms in his cool cowboy shirt.  So much for the party.  We never made it.  I have to say that moment, in that rocker, was a new low.  I was so looking forward to just doing something "normal" with him.  I knew that a seizure could spoil it - but I didn't want Halloween to go by without some attempt at dressing up and having fun.  We still have Halloween night - but last year we took him to two neighbors houses and a seizure hit then too and we had to call it a night.  So I've vowed anew to try to have no expectations - to just go with the flow - and if we make it out of the house, great.  If not, that's fine too.  I tell everyone we try to plan things with the same.  We may make it, we may not.  That's the way life is with a child with seizures.  It's when I "plan" and "expect" that I get my hopes dashed.  Life with Cody just needs to be kept simple.  It was a hard lesson to learn yet again. 

The only good thing that may have come out of it is that the severity of his seizure yesterday made me call the neurologist in distress and she advised to try another tranquilizer I have on hand called Tranxene.  Cody's got his 4th (thank you, God!) molar coming in (complete with runny nose, fever & diarrhea).  This molar is causing his seizure to sky rocket.  So she said to just give him some small doses of the Tranxene to tide him over the next few days.  And so far today (at 3p) we haven't seen a seizure.  Course Cody can stuff 10 seizures into the last 5 hours of the day.....so I'm not holding my breath.  But it's been nice to have a break so far from watching him double over and stiffen up.  We have an appt. with his neuro on Thursday where we'll come up with a plan.  The diet just has no chance of working yet with these teething issues.  I can't WAIT till this last molar is in - teething will be OVER!!!!  I feel like throwing a party. 

Happy Sunday to all - have a blessed week!

Shawna

Oct. 25

Darn - seizures are back up.  We had two days with only 3 seizures...boy did I feel like I was on vacation!  Then yesterday and today they came back with a vengeance.  9 yesterday and already 6 today -- very intense ones.  Obviously we're not going to keep him on the tranxene that we started Sat....even tho it seemed like a miracle at first.  it instantly knocked the seizures back to 3 a day and i was SO hopeful.  Poor little guy was up all night and i don't think i slept so much as one wink. 

i did get some liquid codeine from our pediatrician but even it doesn't seem to help the teething, and hence the seizures.  i just can't imagine an end in sight.  i suppose that's the opposite of "positive thinking" but it just seems like seizures and our little Codybug go hand in hand.  i pray i'm wrong.  our visit with the neuro tomorrow will be good - we'll come up with some kind of plan i guess.  which drug to try when - whether to wait till we're off the diet to try one.  i'm going to ask for the 100th time, "how damaging are these seizures?" and i'm sure i'll be answered the same way i always am - "we just don't know.  seizures are never good.  they are not "good" for the brain.  but remember that they are a symptom that something is wrong in the brain....the seizures are not the overall problem.  they are a symptom of that problem."  blah blah blah. 

So the seizures are telling us that his brain's not working.  i get that.  makes sense.  i just wish there was some fix for either the seizures, or the underlying problem in his brain (whatever THAT is!)  So tiring.  So daunting.  i don't have a lot of smiley type of things to write, sorry.  i just can't muster them right now.  probably the lack of sleep.  so i'll sign off for now - time to give my little lovey a bath.

 love, Shawna

Oct. 26

We had our appt. with cody's neurologist today - long anticipated (3 month wait to get in!) and something i was nervous over.  It's always hard to squeeze all my questions into 45 minutes...and i was afraid of what he'd tell me...and i'm always fearful of looking like a frantic crazy mom....yet i want to be pushy enough to get real answers..quite a balancing act.   I took Don with me because usually (and this is a sad thing) the Dr's treat me much differently when my husband is with me.  Not sure why - perhaps a respect thing guys have for other guys?  Maybe Don's more commanding because he arrives in business attire while I show up frazzled with drool on my shirt?  Either way, I just seem to get taken more seriously when Don's there. 

As God would have it, we were the last patients of the day and got all the time we needed!  He stood there and fielded questions from us till we had asked every single one.  Quite a blessing.  He's a good egg. 

So here's what we heard:  He was concerned that Codys' seizures are lasting 1-2 minutes.  Apparently it's the duration of seizures that tells how big a deal they are.  He wasn't too alarmed at the recovery time - that the seizures knock him out for at least an hour each time.  He wasn't too concerned with the frequency - 8 to 10 a day.  He was concerned with the length.  (This is always such an education for me!)  So he is having us wait 2 weeks to see if the teething abates at all, and if not, we are to use a low dose of topomax (another anti epileptic drug.)  It's not optimum to use a drug while on the keto diet because if the seizures improve, it's hard to tell what did it - the drug or the diet.  But since they are 1-2 minutes long, he said it is definitely needed.  That bummed me out. 

I had prayed yesterday that Cody would have a seizure in front of him so he could see 1st hand what we're dealing with.  And it happened!  So that was good. 

On the bright side, he said that he doesn't believe that the seizures are causing brain injury or delay in and of themselves.  He said it's the underlying condition that's causing the delay.  The seizures, acc. to him, DO affect daily development - but not overall development.  In other words, 10 seizures a day (plus an hour recovery for each one) mean 10 hours that his brain isn't functioning optimally and can't learn as well during those times.  That makes sense to me.  So IF we can stop the seizures, there's the potential that his development could pick up significantly (please, God....please!)  So we're left with a mysterious underlying condition that's causing the seizures - that we'll probably never know. 

He also said that for a child who had infantile spasms, Cody has progressed remarkably well.  He's still developing (altho inching along) and he's never regressed.  He reminded us that his EEG looks really good in between seizures which is a good sign that what he has is epilepsy - not a horrible syndrome that gets progressively worse.  Often i.s. progresses into syndromes that make children regress and sometimes die.  So we dodged a bullet there.  So we obviously have things to be grateful for. 

It's just such a weird thing - hearing that "your child should be much worse off" yet knowing your child is so far from where you hope they'd be.  On one hand you're grateful that it's not worse...on the other hand you want to say "GRATEFUL?  He's mentally the age of an 8 month old in a 2 year old body!  We're told he'll never talk.  He's in his own world most of the time.  Sure it could be worse...but it could be a whole lot better too!"  Such is the stuff I struggle with. 

So we stay on the diet and will probably start another drug.  And we wait.  and wait.  and wait.  and we pray.  and pray.  and pray.  I intuitively feel like Cody's locked up somewhere in there - and once the seizures stop maybe we'll really get to know him.  Could be a pipe dream.  Don said today, "could you imagine how it would feel if Cody one day said 'I love you mommy!'"  If that ever happened, I could die at that moment and never want for more.  I so long to hear his voice.  To know him.  He's so lost in a world I can't enter.  Sure, he has adorable mannerisms and I do get big doses of his personality.  but there's so much more to be had. 

Thanks for reading my report!  And for any extra prayers you might be able to throw our way.   Shawna

Oct. 30

Talk about a small world.  About 4 years ago I went on a mission trip to Leipzig, Germany with our church 20's group (yes, I know, I'm not IN my 20's thank you very much!  but I was a ministry leader for the 20's group at the church).     :)

 Anyway I lived for those 10 days with a local girl named Dorit.  She rolled out the red carpet for us, even baked me a birthday cake.  She was a member of Calvary Leipzig's church and we did ministry side by side the whole time. 

I haven't been in touch with her since then, but knew she'd gotten married and had a baby boy named "Timo" through friends who had gone back to visit.   Turns out, baby Timo was just diagnosed with infantile spasms.  They've been in the hospital with him since Oct. 10th.  Please pray for this little one.  I can't believe I have a friend in Germany who is going through this same rare illness.  Well, not so rare, I guess.  They say i.s. strikes one in 3-4 thousand babies. 

She encouraged me with this scripture:  "Do not be afraid or discouraged because of this vast army. For the battle is not yours , but God's. You will not have to fight this battle. take up your position, stand firm and see the deliverance the LORD will give you...""     2 chronicles 20,15-17

A Christian sister across the world - sitting by her child's bedside as I do - praying for healing.  God is as present with little Timo as He is with Cody.  But there's so much shared pain between mothers watching seizures take over their babies bodies.   No one else on the planet could identify. 

And speaking of seizures, they are still alive and well in Cody.  it was a rough weekend - he had 9 yesterday.  He's been up till 1am every night for some odd reason so we are greatly sleep deprived.  That's all I'll write for now as he is sleeping and I have preciour little time to clean and pay bills.

with love,

Shawna