Sept 2, 2007

I can't BELIEVE it's September!  Wow.

What a bizarre yet phenominal weekend for me.  Don took Cody to his folks house in Oregon so I got to spend the whole weekend with Casey alone at our house.  I didn't realize until Cody left for a couple of days - how intense he is to be around.  I felt like a thousand pound weight had lifted from my shoulders when they left.  Is that awful?  Don't get me wrong, no one could love their child more than I love Cody.  But I needed a break.  Just to have 2 days of not having to see a seizure - is healing for me.  To not have to see him biting himself, making himself throw up, etc etc etc is such a relief.  Any of you moms of special needs kids - I highly recommended sending them out of town with your spouse for a couple of days.  You NEED the time away to re-charge and breathe.  There is so little time to just hold Casey and play with him when Cody's around.  When Cody's here - I nurse Casey then put him down immediately so I can attend to Cody's seizures or craziness.  It was so fun to make faces at Casey and see him smile - coo - try to stand up.

I said I'd keep you posted on how my grief class is going - I'm mainly doing the workbook to try to get un-stuck with my anger "issues" toward God.  And you know what?  It is really helping.  Awhile ago I posted that I'd learned that anger is okay - and part of the grieving process.  But the trick is not to get stuck there and have it turn to bitterness.  Which I did.  So how to get un-stuck?  For me, it's been helpful to meditate on scripture that is truthful.  It's been helpful to practice being grateful instead of bitter.  Every day I email a friend 5 things I'm grateful for and so does she.  Even today I went to church with Casey and instead of getting stressed out that he was crying, I was sweating, he was hungry, and the row of high school boys I was sitting behind were depressing me because they made me think of Cody at that age and how he'll never be sitting in church with the youth group.  He'll be somewhere contained probably...where he can pace...bite...or whatever.  "what a rip-off" I caught myself thinking when I saw those handsome broad-shouldered young boys sitting next to their buddies in church.  I wanted Cody to be one of them someday.  He never will be.  But instead of giving in to bitterness - I decided to look around for things to be grateful for instead and I was flooded.  There was Kathi dancing to the worship music in the next row.  There was a room full of people who all love Cody.  There were people sitting by me mesmerized by little Casey's smile.  The list goes on and on.  So instead of getting down - I went over to Kathi with Casey in my arms and we danced together as "Oh Happy Day" was sung by the worship team.  That was a victory for me.  Gratefullness won out.  I stomped on the devil.  When I sang, "Oh Happy Day" I really meant it.

It's also been helpful to start trying to have some fun.  That's been a foreign concept to me.  But lately, I'm forcing myself to get out and do things even though it's usually stressful and I'd rather just stay at home where life is more manageable.  But so far in August I went to a wedding (with baby in tow!)  I've been to church on Sundays with both kids!  And just this weekend I went with my family, neice and nephew to 'Jump Planet' which is a big inflatable jumping place - and we also went to a water park!  Before this month, my motto was, "if it adds more stress to my life - I won't do it."  Well guess what - I never left the house!  When you have a Cody -- leaving is ALWAYS more stressful!

But my attempts at "fun" don't always work out so great.  At Jump Planet I crawled in and out of 10 inflatable bouncers - held Cody in my arms and bounced him all over (he can't jump yet) - only to have him crumple into 2 seizures.  Each time I had to carry him out like a limp noodle and sit with him til he recovered - everyone staring.  But once he was ready to go again, I'd take him onto another bouncer - often with the other toddler's moms staring at me as I got into the inflatables WITH the toddlers so that Cody could jump too.  I want him to experience everything those kids do!  And at the water park (can I tell you how difficult it is to go to a water park with a disabled child + a newborn?) Cody had 2 more seizures.  Just when we were giggling up a storm in the lazy river, he'd stiffen and seize.  I'd have to walk up  and out of the pool stairs with him convulsing and go sit on the sidelines holding him tight for a half hour.  We'd go back in once he was recovered and 20 minutes later - another seizure.  So I'd carry him back out and wrap him in a towel and hold him yet again.  After that one we just called it a day.  Did he enjoy Jump Planet and the water park?  Not as much as I'd like.  The seizures took their toll.  He was cold at the pool.  He was overwhelmed by all the jumping.  But instead of feeling like "WHY DO I EVEN TRY?" which is how I usually feel....I decided to tell myself, "you gave it a shot.  you did your best.  it didn't work out but oh well.  maybe next time we'll find something he loves to do."  With the Lord's help - I'm trying to turn the rudder of this old angry ship of mine.  Trying to look for the good.  To not jump into the "poor me, why Cody?" statements.  Life is still hard.  Cody's still seizing every darn day.  But it's my choice whether to be miserable or whether to try to find some fun, something to be grateful for....in the midst of it.

So that's progress, right?

Love, Shawna

Sept 5, 2007

I'm sitting here at 5am - my normal wake up time (if anyone knew me in my "prior" life before marriage and kids, they probably fell on the floor while reading that 5am is my normal wake up time!)  Back when I chose when I woke up and went to bed, my personal body rhythm was about a 2am bedtime and a 10am wake up.  Course I've worked my whole life so I've always had to get up somewhat early...but 5 am is a stretch for this nightowl!  It would be the understatement of the year to say I am NOT a morning person.  I hate morning.  If anyone talks to me in the first hour of waking up, I have no answer for them.  All I do is stare at them blankly.  I can barely walk.  The slightest sound is like fingernails on a chalkboard.  Get the picture?  God made me and He made me a person who cannot function early in the morning.  It's His fault.  Haha.

So here I am with a 5am wake up time.  Why, you ask?  Don works in Marysville and that's when he wakes up.  He gets in the shower and BOOM - I am in charge of the house at 5am.  And every morning it's the same drill.  Sprint between babys room and Cody's room trying to keep them both asleep.  I should just wear roller blades.  Cody sits up, oh about 10 times between 5am and his wake up time of 7am.  Casey wakes up screaming about 5 times in those 2 hours too.  Each of my boys gets very restless those 2 hours before they wake up for the day - must be in their blood.  Don walks in at 5 and kisses me on the cheek and says "here ya go" while he hands me the baby monitor.  I grunt.  And I usually say something negative like "I hate mornings" to him.  He disregards my comment every single morning.  This morning it was "I ABSOLUTELY HATE THIS MORNING DRILL!"  Why does this negativity flow from my lips at 5am every single day?  I can't control it - in my comatose state I blather things that I don't even remember later.  I suppose an upstanding Christian friend would tell me that "whatever your cup is full of - that's what spills over when you're in the comatose state!"  What-ever.  Did I say I hate mornings?

So back to my original statement - here I sit.  In between wind sprints between bedrooms.  Drinking a Coke.  My friend Terri keeled over when she read that last sentence.  She would tell me that Coke is poisin (wouldn't you, Terri?)  Well I know.  But did I say I hate mornings?  :)  Sugar and a small blast of caffeine is what it took this particular morning.  Oh, and a muffin - Don's mom makes the BEST zucchini muffins!  So see Terri, I'm healthy - I ate vegetables for breakfast!  :)

The last couple of days Cody hasn't had one of his big gory seizures, just lots of small ones - for which we are grateful.  Casey is still breastfeeding well.  Cody went back to school as of yesterday which is awesome!  August was hard cuz school was off for a month and we got out of our routine - which really seemed to affect Cody.  Lots of those negative behaviors crept back in.  It was nice to go back and see his favorite teachers and begin our routine again.  He did fantastic - played with beans in a sensory bin and never once put them in his mouth!  this is HUGE for us.  We've been working with him on not putting everything in his mouth and he's doing so well!!!  We were at co-op class which is basically a mommy & me class for disabled kids.  I had Casey of course so (like in the mornings) I bounced back and forth between my boys like a ping pong ball the whole class.   Cody can't be left unsupervised so we all had to pitch in to make sure he didn't kill himself or anyone else.

Oh what a slap in the face when he came home Sunday!  Oy vay.  I think I enjoyed my down time with Casey way too much!  The house was SO peaceful and clean!  Within a half hour of Cody's arrival - chaos and craziness and messiness.  But I've settled back into that routine so it feels more normal to live that way a few days later.  Cody had a blast on his road trip with daddy - got to ride his trike for hours and have lots of love time with the grandparents, aunts and uncles, and cousins.

Today we go to CUBS which is his autism class - he LOVES it and so do I cuz I get to sit in a room and watch thru a double paned mirror for 2 hours.  Did I mention I get to SIT and just watch?  It's a nice break 3 times a week.  I pray for another small seizure day.  And for just the right nanny to come on board.

And I say thank you to Gail and Chris who came over yesterday and helped for over 4 hours + brought dinner!  THANK YOU.  You are so great with Cody and so giving of your time.  Today it's Kim - and tomorrow too!  Friends are patchworking to help me till nanny is hired.  Too bad they can't show up at 5am!  Did I mention I hate mornings?

love to all, Shawna

Sept. 9, 2007

Boy do we  have some cute photos of Casey!  He had his 'newborn' photo session on Saturday!  Go to: http://markmegphotography.com/clients/graves/ to see them.  Username is Graves, password is Casey.  I just love them all!  Hope you do too.

We tried to get Cody to pose in a picture.  I use the word "pose" loosely - really what I was shooting for was a fleeting chance of Cody within 5 feet of Casey.  As luck would have it, Casey lay on the blanket in the cutest pose...and Cody plopped down right next to him...and there they lay head to head.  And within a milisecond - Casey started to cry.  DARN!  My one chance to have a photo with both of them in it - just didn't pan out.  Casey was crying and crying.  Cody actually stayed there for a bit.  But it was Casey who wouldn't cooperate!  Go figure.

We had a nice weekend - Megan (Cody's former nanny in Battle Ground) and her husband Jordan came through town and blessed us with a visit, fresh corn on the cob, pears, plums, and gifts for both boys.  My best friend Mike came through town Friday and stepped into the war zone for a day!  And today was church.  Quite nice.  Cody's had lots of seizures but no "turning blue" seizures where he stops breathing.

I'm busy organizing the trip to Detroit.  So many details.  So many medical records to be sent, flights to be purchased, etc.  One more trip to the Ronald McDonald house for a week.  Not our favorite place.

It was so nice to start school again this past week!  Cody went to co-op class tuesday, CUBS (autism class) wed. & friday.  All his therapists said they thought he'd progressed well during the August break.  I agree.  Although his 'negative behaviors' have escalated and his seizures have been out of control...somehow he's still progressing cognitively!  He played a the sensory bin without trying to put one bean in his mouth.  He banged on a drum.  He recognized his therapists and reached up to them.  Lots of little things that for us, are big things.  We keep trying to be grateful and search for positives.

Casey continues to have problems feeding.  I've narrowed it down to reflux.  He screams at every feeding.  So I'm trying to follow all the reflux protocols I've researched - feeding small amounts throughout the day.  Feeding upright.  And me staying away from dairy, caffeine, tomato sauces, and other reflux foods.  Mostly (and oddly) it helps for him to nurse while lying down on his side on the bed.  I have no idea why this works - I think he's more relaxed and therefore his muscles don't reflux as much?  It's quite stressful - and makes it a tough day because these feedings are consuming when you have to do it once an hour.  I've added 1-2 bottles a day to cover the times we're on the road.  If ONLY he were an easy nurser - life would be so much less stressful!  But this is the hand I'm dealt so there ya have it!  But if you're one of those who check in to this site and consider us in prayer - please lift up this feeding issue.  It impacts all of us - especially Cody because I'm so often taken away from him due to the nursing.

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

Sept. 11, 2007

I just got back from a day in the E.R.   The day started out normal enough - Cody was in a good mood - had a good breakfast - I got the boys ready and we headed out for therapy.  But once at therapy class, Cody literally turned on a dime and started screaming hysterically.  And by hysterically - I mean like a wild animal - shaking - bright red - grabbing his crotch.  I put him in the car and called the pediatrician who (after hearing his scream) said "take him to the nearest E.R."  So I pulled a Speed Racer and ran about 5 stop lights and U-turned all over the place because - of course - I was so frazzled I couldn't find the darn nearest hospital!  It's insane what goes through your mind when you're driving a screaming child who you think is dying.  I kept saying "God - show me a hospital!"  I couldn't even remember what city I was in!  Finally I pulled up to Overlake in Bellevue as Cody passed out in the back seat.  Thinking he was dead (or near it) I left the baby in the locked car and ran with Cody in my arms to the ER desk.  I screamed "someone go get my baby!"  And a volunteer went out and got Casey and had my car valet parked.  Whew.  Poor Cody was writhing, screaming, barfing all over the place.  They rushed us in and took notes on his condition.  I kept saying "get some diastat! get some diastat!" because that is his rescue med and he was already having seizures from the pain.  But they don't 'stock' diastat.  Grrrrrrrrrrrrr.  So they gave him some distant cousin of valium which only made him hyperactive.  Then the weirdest thing - I held him in my arms and he urinated and it went EVERYWHERE.  Through his diaper soaking my shirt & pants...soaking his pants.  And then he was calm.  Luckily my friend Kerry showed up then to help wrangle both boys.  Long story short - they did a catheter on Cody (while he was awake and coherent...I had to lay on top of him while he screamed!)  and no problems with his urine which ruled out a stone or a urinary tract infection.  So they sent me home with him and we go to Children's tomorrow for a 1/2 day of ultrasounds and catscans.  CRAZY.

The most surreal moment for me was when they were inserting the catheter and Cody was beet red and screaming to death...and the nurse said "if he doesn't relax this isn't going to work."  I said, "RELAX?"  CRAZY.

He's finally in bed with daddy - tossing and turning - seeming uncomfortable and grabbing at his crotch.

I will say, shockingly, that I'm doing okay.  You'd think I'd be wrung out from a day at the ER managing Cody and a baby for 5 hours in one tiny room.  And I am tired.  But strangely I'm okay.  Normally I tank after one of these episodes and start with my "why this too?" statements.  "on top of everything...this?"  "can't Cody get ONE break?"  etc. etc. etc.  But today, for some reason, I was able to transcend the situation just the tiniest bit and rise above.  I didn't freak out.  I'm not asking the "why" questions.  I'm not super dooper angry.  I'm okay.  Weird.  Seriously.  I've never (that I can remember) actually felt how it feels to rise above the crud and be okay.  I usually wallow in the crud.  But today was different.  Don't get me wrong, today sucked.  But I've gotten a smidgen of a taste (I think) of God giving me grace for the moment and peace for the trial.  Again....weird.  Not sure why today or why now.  I have been trying to get un-stuck - maybe this is the beginning of that?  Maybe some of this grief work is paying off?  Who knows.  I prayed for endurance and peace and maybe I got it.  Simple as that.  I don't really want to dissect it anymore cuz I'm tired and it's bed time.  But I'm grateful.  And I hope I feel this way tomorrow after 1/2 a day at the hospital in a tiny room with a baby and Cody again!

Thanks Kerry and Kim for sitting there with me in the barfy, peed on room in the E.R.  Thanks for not telling me the my clothing reeked of urine (altho Kim insisted on taking a picture of me on her cell phone with my jet black blouse covered in patches of beige graham cracker barf.)  Thanks Terri for volunteering to go with me tomorrow.  Thanks God....for whatever You did for me today.  I liked it.  and if anyone out there still feels like praying for us, we'd love it.

Shawna

Sept 12, 2007

Just got back from a long day at Children's Hospital in Seattle.  Thanks Terri for meeting me there and helping me wrangle the boys!  You're a life saver!

The tests showed that Cody's kidneys and bladder are normal - as are his genitals.  The urologist said his best guess is that he may have passed a kidney stone yesterday (OUCH!) caused by his anti-seizure meds (grrrrrrrrrrrrrrrrr.......)  I HATE DRUGS!  Or that his bladder got irritated or inflamed from an unseen virus or a reaction to one of his meds.  He said it may take up to 3 weeks for the pain to resolve and until then to give him valium for moderate pain and if he has another attack to bring him to the ER where they'll scan him for bladder cysts.

So for today I'm grateful for many things - that the urology dept (who has a 3 month wait) choose to see Cody as an emergency because of his seizures and squeezed us in between surgeries today.  That the Dr. was very nice and took lots of time with us.  That the scans didn't show anything wrong with his insides.  That he's not in pain like he was yesterday.

He still winces and grabs his crotch when he urinates - but nothing like yesterday!  I am exhausted.  But like yesterday - I am somehow not feeling overwhelmed.  New for me.  "Overwhelmed" is my middle name.  Unlike Don who says "Danger" is his middle name.  Haha.   Perhaps that was true back in his steer wrestling days.  But I must remind him that our lives have changed and he needs to come up with a new middle name.  Maybe "tired" or "stressed".  Don "pooped" Graves.  Whaddya think?  Anyway...I don't feel overwhelmed.  Now that's a miracle.  I do feel tired - too tired to keep hitting this keyboard with my fingers.  So I will say goodbye and thanks for praying to those who did.  And thanks to those who check this site daily - Terri, Gail, Megan, Tina...you guys amaze me and your consistent care and prayer for us keeps us going.  And probably has a lot to do with me not feeling overwhelmed!

love, shawna

Sept. 15, 2007

Still no more E.R. runs - whew!  After discussing with our neuro - it's most likely Cody passed a kidney stone this week. I feel SO sorry for him.  I've heard that it is SO painful from friends who have experienced this.  Wow.  No wonder he passed out in the car from the pain!  He is SUCH a trooper.  He doesn't seem to be in any pain anymore thankfully.  Tomorrow he and daddy compete in another 5K run in Seattle - Daddy runs and pushes Cody in his jogger stroller.  Go Team Graves!!!

We are also busy preparing their trip to Detroit.  Yes, I said "their" trip - I am not going.  When it came down to it, we all decided that taking an infant just wasn't a great idea.  1) germs!  On the plane, and during 4 days at a Children's Hospital - I didn't want to expose Casey to all that yet.  2)  He's still nursing and I'm also pumping regularly to keep up my milk supply.  Not conducive to travel.  3)  He has reflux and cries .... well, a lot!  Not so much fun on a plane or at the hospital!  So luckily I've been blessed with a husband who says "no problem" at the idea of traveling to Detroit with his son for 5 days.  It will be grueling for him - including a 2 day EEG where Cody is confined to a hospital bed with electrodes glued to his head.  I'm going to try to gather some help there in Detroit - may even hire someone to come in and give him a hand.  So yay for Don...he is a hero.  Please pray for a smooth trip for them if you can.  Cody will have a 2 day video EEG Tues/WEd.....a PET scan Wed afternoon where he will be sedated...another PET scan Thurs...and an appt. with Dr. Chugani Friday.  The PET scans are our reason for going.  Dr. Chugani gives the only opportunity in the country to have an experimental PET scan that uses something called flunerazole.  It metabolizes in the brain and shows if there is any focalization of seizure activity.  Whereas the other PET uses glucose and strictly shows how the brain metabolizes it.  So we should get TONS of info from this.  I hate the idea of Cody being sedated 2 days in a row - but we hope this will provide the needle in the haystack that will show us what is causing his seizures.  I will conference in with Chugani when Don meets with him.  Please pray too that this phone call works and I can be there long distance.  They leave at 10pm Monday the 24th.  It's taken every free moment I've had lately to organize the trip so I'll be glad when they're off and everything is set.

Cody continues to love being back at school.  There's a new boy in his autism class who is darling - he's African American and has a short clipped hair cut.    He was standing next to cody on the 1st day back at the sensory bin (a big bin with tons of lentils in it that the kids run their fingers through.)  I watched them side by side - and gasped when I saw Cody reach his hands toward the boy.  I feared he'd whack him in the head, bite him, grab his ear, poke him in the eye...who knows what!  But to my surprise - Cody simply reached over with both hands and rubbed the boys head back and forth, up and down, and sideways for about a minute!  It was HYSTERICAL.  The best part...the boy kind of leaned in to Cody's hands as if he enjoyed it as much as Cody did!  Two sensory boys each getting their needs met - Cody is tactile and wanted to touch - the other boy wants his head rubbed!  A match made in Heaven!  I smile even as I write it.  God shows me such cute moments with my little guy that take my by surprise.  Things that make me love how quirky and cute Cody is.

Our dear friends Merlyn and Lisa showed up today and insisted on taking BOTH boys for the afternoon so we could get out!  Don and I left stunned - we haven't been out without at least one of the boys in 2 months!  It was so nice and so needed.

That's our news for today - thanks for checking in!  Happy Sunday to you!

Shawna

Sept. 17, 2007

Go TEAM GRAVES!  Don and Cody competed in their 2nd race on Sunday and came in 1st in the "Stroller Division!"  Yay!  (See photo below).  Don won a money prize and a certificate.  I'm sure it was Cody's navigational skills that helped nab the win!  :)

Cody had a rough day today - lots of seizures - lots of crying and fussing.  Not sure why once again.  He is a mystery.

Don & Cody's trip to Detroit is all planned and set in stone.  Don's sister Lani is going with him - so she'll be an awesome helping hand.  Plus Cody loves her (and I think I can safely say the feeling's mutual!)  They leave the 24th of Sept.  I will be conference called in to the appointment with Dr. Chugani.  I will miss seeing him in person - he's a good egg.

That's it for now - time to feed the boys and put 'em to bed.

much love to you all!  Shawna

Sept. 23, 2007

I can't believe it's been a week since my last post.  What a busy time - prepping for the Detroit trip has taken the life outa me!  Plus my mom's been her for 5 days in between nannies.

Pretty much this last week has been a blur of taking care of the boys, going to Cody's therapies, and nailing down Detroit details.  My boys take off tomorrow - I can't IMAGINE 5 days without them.  And at the same time, I feel it will be a relief to have a break from the intensity of Cody.  No watch-dogging 24/7 with eyes in the back of my head looking for seizures.  No getting bloody noses from his manic movements.  No watching the horrible seizures take over his body.  I've talked to other special needs moms who say "breaks" are desperately needed to stay energized for your child.  So I don't feel guilty at looking forward to my 5 days.  Mixed with the relief is a big fear that Cody will miss me - and certainly that I will have a hard time giving up my "control".  Luckily Don is fantastic with him and I trust him implicitly.  Plus we're lucky that Don's sister volunteered to go with them and help.  It's still hard.  My baby...away from me for 5 days in a new city.  Not holding his hand while they apply those dreaded electrodes will be hard.  Not singing him his favorite songs as he falls into a sedated sleep for the PET scan will be tough.  But I've been through SO many sedations and EEG's...I have to honestly say it will be so nice not to be the one to see him suffer through these.

He had two days this past week with only 1 seizure each.  And on those days he had his best therapies ever.  He was more clear headed, focused...so different when seizures aren't part of his day.  I was so excited - hoping we'd turned a corner with this new med (lamictal) - but alas the last 2 days they have come back full force.

On a brighter note, Casey had his 2 month "well baby" check up and got an A+!  He's tracking great visually, smiling up a storm in response to other's smiles, holding his head up by himself.  Course I'm still so paranoid.  I looked at Cody's videos at that same age and he was identical.  I won't breath till Casey passes the "5-7" month mark where infantile spasms usually occurs.  Casey is SOOOOOOOOOO cute - and so smiley!  I literally have to avoid eye contact with him when he eats because the minute he catches my eye he smiles - thus making breastfeeding or bottle feeding impossible!  We are seeing a gastro Dr. this week about his reflux - he still has a painful time eating.  It takes so long to breastfeed him that I've had to resort to pumping every few hours and bottle feeding him part of the day.  In addition to reflux, he has a poor suck reflux because of a super high palate so we're seeing a therapist at Children's about that this week too.  It's funny - a friend was asking me how Casey was doing and I said "great!  he's perfect!  all we're dealing with is an appt. at Children's for reflux."  She and I both gasped...remembering when Cody had reflux as a baby (when he was still normal) and taking him to the Children's hospital at that time made me bawl for days - ask for prayer - freak out.  Now, after going through so much with Cody - taking Casey to Children's for reflux is an afterthough - a walk in the park.  It doesn't even register on my radar screen.  God has really developed my hospital muscles.  And He has stretched my ability to endure hardship where my children are concerned.  What a transformation - what leveled me (reflux) with Cody - doesn't even make me bat an eyelash with Casey.  There are SO much more huge issues than reflux.  Not to minimize reflux for those babies who have it - it is painful and yucky and hampers the ability to breastfeed.  But compared to seizures it is like a sneeze.  I think in God's economy He is probably proud of the muscles I've developed...my ability to endure these problems with Casey without stressing out.  My friend Kerry is our women's ministry leader at church and she too has developed her "suffering" muscles.  After living through the death of her husband and a child (at the same time) diagnosed with leukemia - she thought she'd never want to see the inside of a hospital again!  Yet guess what she spends much of her ministry time doing?  Hospital visits.  You know why?  She's been there.  She understands like others might not.  It's the last place she "wants" to be - a hospital floor full of sick people.  But it's the first place she knows God can use her - because she's learned endurance through suffering.  Others need to know they can make it through to the other side.  She is living proof.  She's been to the hospital twice with me - once for Cody's recent E.R. visit and once for Cody's recent surgery.  Both times she was my rock.  She inspires me.  I told her "someday....I bet I'll wind up doing what you're doing.  Reaching out to people whose kids are suffering because God has allowed that muscle to develop in me."  She said something I didn't want to hear, but I know is true.  She said, "God doesn't wait till we're on the other side of it to use us.  He uses us IN it."  That wasn't music to my ears - but it did challenge me to look for opportunities to reach out to others DURING this trial - and not wait till it's over or easier.  Because by ministering to others while I'm IN it, ministers to me.  It will keep me other-centered instead of self-focused.  It's the enemy's lie that we believe we can't be used during our time of darkness...our time of broken-ness...our time of weeping.  God's Truth is that it's EXACTLY that time that God can use us most.  When we are empty of our own abilities He will shine through us most greatly.  I won't be put on a shelf by the Lord until this trial is less harrowing.  He will use this very trial to glorify Himself and to draw others to Him through me...IF I allow it.  Crazy, huh!  When I am my most broken, I could imagine God  saying "finally...I can use you!  You are not full of yourself.  You are not dreaming of what you can get out of life.  You are gasping for air.  You are drowning.  You are empty.  NOW I can use you."  It's my responsibility to look for those opportunities.  It might be as simple as the nurse in the Dr's office.  or the other mom at therapy class.  Or one of Cody's teachers.  When you have a child like Cody, people watch you.  They often wonder "how does she do it?"  They often ask..."what keeps you going?"  I'm reminded that IN this furnace, God wants to use me.  I need to look for the chances He gives me to be used.  It's comforting to me to know that He is redeeming this horrific, scary trial for His good.  That even THIS torture...He WILL use for GOOD.  As long as I am available for it an not so stuck in the fetal position that I miss out on the ways He is redeeming it before my eyes.

Shawna

Did you see the Oprah show with Jenny McArthy on her autistic son?  We've also been planning on starting the gluten/casein free diet - I'm going to get the products when the boys are gone and I have some time.  We'll see how that goes.

Sept. 24, 2007

Don and Cody just left.  Sigh.  SO hard to watch Cody being wheeled in his stroller into the airport without me.  I got home at 9pm and after a super stressful week pulling this trip together, I decided to treat myself to "Dancing with the Stars" and "The Bachelor" back to back.  Ahhhhhhhh............reality TV.  My great vice.  Tonight reminded me why I don't have cable tv.  I'd never get off my couch.  I was in a vegetative coma on my couch tonight watching Jane Seymour do the Fox trot...and watching the sandy haired bachelor pass over the contortionist and the bachelorette with the webbed toes.  Poor gals - they tried so hard!

Now I retire to bed with my little Casey-bug.  It will be so nice and so needed to spend some one on one time with him.  I am pledging not to turn my television on this week - and writing that on this blog will hopefully hold me accountable.  There's just something so delicious about zoning out, isn't there!?  Don laughs at my vice - but he would have to admit that he's drawn to the occasional episode of American Idol with me!

The house is a catastrophe.  I have stacks of unpaid bills.  Laundry overflowing.  This will be a productive week!  Hope you have a great week too!

love, Shawna

Sept. 25, 2007

I've talked to Don about 5 times today - they got into Detroit at 6am (ugh) and Cody began his EEG at 11am.  The big fat bummer is he is confined to a hospital bed - can't get off of it - which (if you know Cody) is nearly impossible.  The reason he's confined to the bed is because there's a video camera pointing at the bed that is recording his every move and will capture him if he has a seizure.  In most EEG situations, the child can at least walk around the hospital room and I would move the camera to follow him.  But in Detroit, the camera is fixed and he can't move.  Don says he is hating it and each time I've talked to Don I've heard Cody screaming in the background.  For a kid who needs to move constantly, this is torture...for him and for Don and Lani (Don's sister.)  Dr. Chugani already paid them a visit (which really made me wish I was there - so much access to one of the country's specialists in infantile spasms!)  Tomorrow morning at 9am (6am our time) Cody goes in for his 1st PET scan.  Then he has the rest of the day free.  Thurs. is PET scan #2.  Friday is the appt. with Chugani.

So here's the HUGE prayer request - Cody hasn't had a seizure yet (as of midnight Detroit time).  I can't believe I'm writing this:  please pray for a seizure - one of the horrible ones where he turns blue.  We NEED one of these on camera and to be recorded on EEG to see what's going on in his brain during it.  I would hate to travel all the way to Detroit and get nothing on video.  Dr. Chugani needs the EEG to compare to the PET scan.  Cody's seizures usually occur most in the morning - but tomorrow morning they're whisking him away for the PET scan so he won't be videoed then.  He hasn't had a seizure ALL day - and of course the ONLY day in the last year he hasn't had ONE seizure is the day he's being videotaped!  Grrrrrrrrrrrrrrrrrrrrr.  What are the odds?  This happened to us at Children's hospital the last EEG too - two days of monitoring and not ONE seizure.  But when I got him in the car to leave, boom - seizure.  I pray this doesn't happen again.  That will really bum me out.

Don sounds like he's holding up altho they took the red-eye last night so he got no sleep and he & Lani have to stay up all night with Cody tonight.  I, on the other hand, slept in till 9am today!  Oh how good it felt.  Altho I feel guilty, I am trying to rest up so I can give Don the weekend off when they return friday.  It's really nice being in a quiet house.  I'm not getting much done, tho, because Casey pretty much wants to be held 24/7.  But I did get some bills paid and did the dishes.

That's the news for now - we covet your prayers for this trip.  It's so expensive to fly there and to pay for all these tests...we hope so much for some good data to tell us more about our little hero's condition.

love, Shawna

Sept. 26, 2007

YAY YAY YAY!  Cody had several seizures this morning ON VIDEO while hooked up to his EEG electrodes!  So Dr. Chugani has a really good example of what his brain is doing.  Oh I'm SO glad (altho I can't believe I'm happy he had seizures!)  This will give the Dr. so much information and he'll be able to compare Cody's EEG to his PET scan to see where all the seizures are coming from and whether there's a focal point that could be removed by surgery.  I talked to Don this morning - he hasn't slept in the last two night and neither has his sister.  They are such troopers.  Don said last night at about 9pm Cody reached up in the blink of an eye and pulled every single electrode off his head in one swoop!  They had to call the technician at home and have him come in to re-apply them!  I'm sure they were glad to see my little monkey leave the EEG wing this morning!  His PET scan went off without a hitch - they sedated him only to the point that he'd lay there still and Don said he laid in the tube the whole time with his eyes open but didn't move.  So they are done for the day in Detroit and can relax until tomorrow morning's PET scan.  I hope Don and Lani get a chance to sleep.  It's a bit chaotic at the Ronald McDonald house but they did manage to get a room with a queen and a twin bed so that will be perfect for tonight.

Thank you if you found time to pray - it worked.  Soon my little one will be back home in my arms!  They arrive late Friday night.  Yesterday I did enjoy the quiet and not having to cook for anyone...but it was hard not being stressed all day knowing what Cody and Don were going through.  Casey has been quite a pill these last 2 days - he won't be put down so I've tried to get housework and stuff done while holding him in the baby bjorn.  I made the colossal mistake of drinking something with soy milk in it yesterday which kept him up ALL night with gas pain.  I'll never do that again!  Today we go to Children's to have his suck reflex tested - he takes SO long to finish a bottle or breastfeed and doesn't really suck as he should.  He seems very discoordinated about it.  So we're seeing an occupational therapist who can evaluate him and maybe give me a special pacifier that helps him learn how to suck properly.  Tomorrow we go back to Children's to have his reflux looked at by the gastro Dr.  How odd that in Cody's absence, his brother is still causing me to drive to Children's hospital twice a week!  At least it's for small matters - nothing brain related!  Praise the Lord.

Well that's it for now - thanks for checking in!  Shawna

Sept. 28, 2007

Well we had our meeting with Dr. Chugani in Detroit today.  Unfortunately, there was no cell reception in his office so I was cut out of the meeting.  SO hard.  Of course I'm cursing myself for not thinking ahead and sending a tape recorder along with Don. DUH!  Note to self, parents....NEVER have a neuro meeting without tape or videorecording it.  The information is too valuable and you can't digest it all on the spot.  STUPID me.  So here's what Don relayed to me...

The PET scan showed bi-lateral brain abnormalities in the temporal and parietal lobes.  But it also showed that there *may* be some focalization in the hippocampus (which is buried deep in the temporal lobe.)  In English, that means that after more testing, IF the seizures continue to seem to originate from the hippocampus, there's a *chance* for surgery.  It's really hard to determine anything buried that deeply in the brain.  We need to go in for an extended video EEG at Children's in Seattle to give Chugani more seizures to look at.  Basically, to make surgery possible, there has to be part of the brain where a good chunk of seizures are originating.  That chunk can be removed and would hopefully diminish seizures.  But when the seizures come from everywhere (generalized) - you can't remove a "chunk" because the whole brain is affected.  So while Cody has lots of abnormal spots...there may be a spot of origination that we could remove.  But according to Chugani it's a long shot.  So we'll see.

He also suggested dilantin as a new drug to combine with lamictal and said to wean off trileptol.  I emailed our neuro here (Dr. Saneto) and he said he'd call Chugani Monday because he doesn't like dilantin at all.  He's also going to discuss the PET scan results so I'm happy that he's jumping on board and calling Chugani to confer.

Chugani also said Cody would probably never talk - at best might have "a few words."  That's hard to hear. But I've heard it many times before.  That's the bulk of the info.  Pretty disheartening.  I was hoping he'd say "wow his brain has really improved!"  But instead he reported lots of abnormalities all over the place.  And the bummer is, the abnormalities are mostly in the temporal lobe which houses communication (hence the thought that he probably won't talk).  

Temporal lobe: The temporal lobes are the side areas of the brain. The functions of these lobes include making memories and remembering, and emotion (such as feeling happy or sad). They are also involved in speech, hearing and perception (how we see the world around us).

Parietal lobe: The parietal lobes are behind the frontal lobes. They control how we feel and understand sensations, how we judge spatial relationships (such as the distance between two objects) and our co-ordination. These lobes also help us with reading, writing, and maths. Some involuntary movements we make are also controlled here.

So clearly Cody's biggest problems will be communication (temporal lobe) and those things associated with the parietal lobe.  It stinks cuz communication is the foundation for development.  Without that, you're pretty stuck.

I'm off to the airport to get my boys but wanted to post a quick report first.   Don said Dr. Chugani was super nice and very informative - so it was good they went.  Cody's kind of beside himself though and I think the trip took a big toll on him.  He was screaming in the background every time I called Don.  I can't wait to get him home and back in his routine.

That's it for now - love Shawna

Sept 29, 2009

Sept 30, 2007

Wouldn't you know it - Cody was hooked up to electrodes for 2 days in Detroit and 2 seizures was it - not enough to determine anything acc. to Dr. Chugani.  And today alone he's had 2 horrible ones within 8 hours!   He's passed out in bed right now - had one in church too.  So tough.

Our local neuro, Dr. Santeo, is supposedly talking to Chugani tomorrow.  I hope Saneto follows through and doesn't just try once (since no doubt Chugani will be hard to get ahold of.)  I may have posted this already but Saneto's not happy with the idea of using dilantin and wanted to discuss it with Chugani.  We'll see who wins!

It's been a nice weekend with don and cody back home.  back to the grind tomorrow!  But at least my boys are home safe and the trip is over.

How time flies - Cody at 6 months of age at his first EEG (on the top) and Cody today.  I can't tell you how depressing these photos are.  They motivate me to pray all the more for my little boy who has endured so much yet seems to always manage a smile.  I had no idea his first 3 years of life would hold so many of these EEG's - I pray for a miracle - that there aren't many more in his future.  Shawna

That's it for now - too tired to write more - happy Monday!

 Shawna