July 3

Cody's seizures are back down to 1-2 a day - whew.  I figured out why I think they skyrocketed a few days ago.  His back molar just burst through the skin.  Any teething, colds, flues, etc. can hugely increaes the number of seizures and I suspect that's what did it.  Once the tooth broke thru, he calmed down and today he was back down to 2 seizures.  He's still pretty fussy, but at least he's not having 8 of the buggers again! 

Hey, he can now get up all by himself to walk!  He puts his front arms on the floor and props his butt up in the air...and just kind of stands up!  He's quite pleased with himself!  We took him to the park last night and he walked the length of the grassy field about 8 times!  Never fell down either.  I've been so excited because the last two days we only saw 1 seizure total - but alas tonight he had 2 within  a half hour's time.  I took him to Fred Meyer and even among all the noises he did great!  I almost felt normal.  Last time we were there he had a seizure in the aisle and drew quite a crowd.  Today he seemed to enjoy all the stuff to look at. 

We're still praying our socks off for some cognitive gains.  He is still so often in his own world.  His eye poking and other repetitious behaviors are still pretty out of control.  He started hand flapping which is the most common behavior of autistic kids.  I wonder every day if this journey will take us into the world of autism.  He has so many signs.  But many professionals say he's too socially engaged.  I'm not so sure.  They get glimpses of him -- but I see the whole picture.  Very often he'll just sit in one spot and bang his hands together for what feels like an eternity before snapping out of it and looking around.  So many uknowns.  So much to pray for. 

My leg is healing up - altho it's a bit tough having Cody on my lap when he jams his foot into the stitches every few minutes! 

Happy 4th of July to all of you.  We're going to stay in and try to shield Cody from as much of the fireworks noise as we can.  Not exactly an exciting way to spend the 4th - but you gotta do what you gotta do, right?  Go out and have some fun for us, will you?  love, Shawna

July 5

Hi all - luckily the fireworks noises didn't affect Cody a darn bit. He didn't fall asleep till 10:30 which is normal - and slept right thru all the noise!  Wish I could say the same for Don and I.  But at least Cody got a decent sleep. 

We would love prayer for a huge day tomorrow.  Cody has an MRI at 1:45pm plus a lumbar puncture while he's sedated.  Things get especially dicey for Cody when he's sedated because of his reflux and laryngomalaysia (floppy larynx which he's had since birth.)  He'll grow out of both but just hasn't done so yet.  The last MRI they had to make an oral airway and use a chin lift because he stopped breathing within the first 20 minutes.  I get very antsy and nervous when he has these done.  We have to get there an hour early to have numbing creme put on his foot so the I.V. won't hurt as much.  And you just sit there for an hour in this horrible sterile room while the creme takes effect.  Then they insert the I.V. which still hurts him like crazy, even with the creme.  He's had dozens of I.V.'s in his time...but each one still makes me crazy.  Then the worst part for me - he goes unconscious in my arms.  I always feel like he's dying...seeing him go limp and his eyes roll back in his head.  Then they wheel him off - his tiny body on a huge stretcher - and I'm left to sit there an panic for 2 hours while they do the MRI and lumbar puncture.  It's just so stressful for both of us. Please, if you can, pray for both to be successful procedures.  For the I.V. to go in well.  And for peace for me as we make yet another trip to the hospital. 

This MRI will help the Dr's see if his brain has changed any as it's matured the last 6 months - to see if any structural defects have become apparent.  We will take it with us to Arizona July 17th when we meet with Dr. Johng Rho who is an infantile spasms expert and a huge advocate of the ketogenic diet.  I hear the temp. in AZ is 110 degrees - and if you know me at all - you know I am already sweating!!!!

I'm frantically gathering all of Cody's past EEG's, Catscans, MRI's, Pet scan, etc. for this Dr who wants to trace things back to the very beginning and review all the original tests.  I like that...he seems very thorough. 

So there ya go - I'll breathe a sigh of relief on the way home from OHSU tomorrow.  Cody's still having about 1-3 seizures a day - altho he's stirring in his sleep and waking up quivering and with a blank stare a bit more which makes me nervous that there are more seizures than I suspect.  His eye poking is totally out of control as is his hand flapping.  He flaps his hands so much that I literally have to dodge them to get a spoon full of food in his mouth!  He's clawing his legs too.  So many of these behaviors are exacerbating and I have nowhere to turn.  I think I'm going to try to hook up with an autism person (Dr....or therapist...or whatever they're called) to see if they have any help for these behaviors.  I just can't imagine that nothing can be done.  His OT and others just shake their heads.  But if most autistic kids have these tendancies, then I guess i'll have to try to hook up with that world to see how to manage Cody.  He just can't live in arm restraints 24 hours a day anymore. 

gotta run and make him some lunch - love to you all!!  Shawna

July 6

The MRI was successful.  He came out of it alive and well.  Whew.  Thanks for your thoughts and prayers.  It was grueling for me, a bawl baby.  But we both made it out in one piece.  Unfortunately the stress of the day has given Cody about 7 seizures so far which is not good.  I pray tomorrow will be easy and calm. 

This is a little diary of our day yesterday.  Even if no one reads it, that's okay.  Sometimes I absorb so much in a day that it's too much for me to contain - too much frustration, too much pain, too much stress.  This is my outlet...for what it's worth. 

After tossing & turning all night, Cody wakes up at 6:30am.  I've 1 hour to get as much food in him as possible so he can fast from 7:30a - 2:30p.  HE WON'T EAT.  as he sits in his high chair, his hand flapping is so excessive i can't get a spoon to his mouth.  he whacks several spoon-fulls of food out of my hand and onto the walls.  as i try harder to get food in, he screams louder.  I manage to get 1 pureed scrambled egg down him and that's it.  I dread the next 7 hours knowing he will be starving and there will be nothing I can do.  

i pack his diaper bag full of goodies to give him as soon as his MRI is over.  all his favorites:  sweet potatoes, teddy grahams, apple juice. 

we leave at 10a for an occupational therapy evaluation at the hospital.  I would never have wanted to schedule this on the same day as a stressful MRI, but i had to wait weeks to get this appt. so I had to take it.  Cody is undone, so tired he can't keep his head up.  So hungry he screams the whole time.  And at this inopportune moment, the back molar that's bursting thru (aren't those supposed to happen when kids are 2?) starts to bleed.  The therapist takes us back and tries to "evaluate" my child who is sitting in a heap crying and pawing at his mouth.  No matter what she put in front of him, he stuck it in his mouth.  He didn't interact at all with her - no eye contact.  He screamed for an hour.  I didn't even bother to tell her "look, he didn't sleep a wink last night and is starving and has a new molar...."  I've done enough evaluations to know that this is the norm for us.  It never fails that Cody is at his worst on these days.  Murphy's law.  And the therapists don't really care about those details - they call it a "snapshot" of how your son is doing right at that moment.  And at this moment, my son is going crazy.  By the end of the hour she says she can't do the evaluation because he is so fixated on chewing on things.  He doesn't attempt to do the puzzles, play the games, look at the toys.  He sits in a heap and chews things.  All of our insurance allowances for therapy are based on these evaluations.  she says she'll try to make do.  I tell her about my fears of autism.  She agrees that Cody exhibits every symptom.  I'm crushed.

We get in the car and rush to the MRI appt. at OHSU.  I cry the whole time thinking that we may have the autism vortex to add to this crazy mix.  Cody sits in his carseat and pokes his eye the whole time.  We can't find parking so park blocks away.  He's still screaming from being tired and starving.  We walk into the children's hospital and the weirdest thing happens - I breathe a sigh of relief.  How crazy that the place i feel most relieved is among the other kids who don't look or act 'normal.'  Our peer group.  We ride up the elevator with a little girl with a severely deformed face.  I smile at her warmly and her mom gives me a wry look that says it all.  She didn't have to say it, I knew:  "I'm so tired.  I'm so overwhelmed.  I'm in so much pain."  A sorority I didn't want to join.  I felt the same way...tired, overwhelmed, sad. 

We get to the basement (why do they do such creepy procedures int he basements?  It makes it all the more creepy.)  There is someone waiting for us with a bucket of dry ice frothing over and 5 syringes laying in it.  "This is to collect Cody's spinal fluid."  I feel sick.  I have to sit there with that lady and her overflowing bucket of dry ice for AN HOUR while we wait.  Screaming Cody.  Eye poking Cody.  Mouth bleeding Cody.  The whole place is staring.  We FINALLY get called in for the MRI and they have us sit in the procedure room full of metal and needles for 20 MORE MINUTES as Cody continues to scream.  There's a big man who basically lays on top of Cody so he can't move while they insert the i.v. in his foot.  My little angel screams and turns so red I think he'll explode.  They insert the anesthesia and slowly, it takes over his body as he lays in my arms.  his eyes roll back, he starts to quiver a little.  "something's wrong' I tell the Dr.  "he's fine - that's just what's supposed to happen."  His eyes were still half open and he wasn't quite conked out yet.  He looks up at me, his tiny body on the huge stretcher, and lifts a hand up to my cheek and brushes it.  I dissolve.  This blank stare and slo motion movement is something I know all too well.  Cody spent months of his life in a trance that looked just like this.  Anti seizure meds stole his personality - he never smiled, laughed, just stared.  Just like this.  I start to bawl (and apologize too many times for it) and the dr's try to comfort me.  doesn't work.  he finally goes limp and they come at him with the frothing "bucket" and 5 syringes and I head for the waiting room after kissing Cody on the forhead.  As i leave i realize i missed an opportunity to ask these physicians to stand around cody as i prayed for him.  they may not believe in prayer, but i'm certain they'd have honored my request by at least standing with me.  i'll have to remember that next time.

Within 20 minutes one dr. comes out to say the lumbar puncture went well.  whew.  i left to get a drink at the cafeteria knowing they were just beginning the MRI.  i'm joined in the elevator by a little boy (about 3 years old) and his dad - a very hip dad too.  kind of retro.  they were visiting a friend in the hospital.  i could tell the little one idolized his way cool daddy.  they pushed the floor i was going to and i said, "hey, you're going where i'm going" and the boy said "to get a cookie!"  His dad gave him a high five and said "yep sport - wer'e going on a cookie search."  they bounded out of the elevator, the boy on his dad's shoulders.  they didn't know...but i'd stopped short...outside the elevator, leaning against the wall...tears streaming down my face.  "oh Lord, i can't take this.  Why can't I be skipping down the hall with Cody VISITING someone instead of living in this darn hospital - prodecure after procedure - poke after poke."  It's so hard to watch normal kids - so carefree - while my baby lies conked out having magnets scan his brain for defects.  Especially on the heels of the therapist confirming my suspicion that autism may be down the road.  I gathered myself together and got my coke.  headed back up to the waiting room. 

There are two ladies sitting next to me talking about their church's youth group.  We chat a little and I can tell they are neat Christian gals.  I ask them to pray with me for Cody - and explain how risky it is to sedate him with his reflux and breathing issues.  Last MRI he stopped breathing 20 minutes into it.  They oblige and I'm glad I asked.  I spend the rest of the next hour sitting alone - thinking.  How many MRI's have I made it through?  5 I think.  This one is searching yet again for any changes in Cody's brain structure that might show a defect.  Kids brains change every month so regular MRI's will be a constant part of our future.  My girlfriend's baby has a cast on for a broken bone.  she said after going thru that with him, she thinks i'm a superhero.  At this moment, I realize how much i've experienced with Cody that not many parents do.  And it's only the beginning.  I feel exhausted and just want them to bring my baby out.

they finally come to bring me in - he's just starting to wake up.  'it went great' the anesthesiaologist says.  I have a warm yummy bottle in my hand as I walk into his room.  I scoop him into my arms and give him his bottle - and he falls asleep drinking it.  We sit there in this room full of shiny silver rails, handles, metal trays...Cody looks so out of place wrapped in a yummy soft white blanket in my arms.  He's sick from the anesthesia.  Has needle marks all over his back.  Has an iv sticking out of his foot.  Again I shake my head and wonder how much more he'll have to go thru.  Once he's un-i.v.'d, I plop him in his stroller, blanket and all - just to GET OUT of that sterile procedure room.  I intro'd him to the lady who'd prayed for him and next to her, he chows down his sweet potatoes and teddy grahams.  And we head out to the car.  One more day under our belts.  One more day God has given us the strength to keep on truckin'.  I strap him into his car seat - grateful he's okay.  Grateful he's my son.  Grateful we have the rest of the night to play in the yard and snuggle together.  And that, is a day in the life, of Cody Graves!

love, Shawna

July 8

Today was very special for me.  And for Cody.  He got to meet his 2nd friend who also has infantile spasms.  This little boy's name is Aiden and he is ADORABLE.  He and his family showed up in our driveway because they'd run out of a drug that Cody once took, and I had left over's of.  What a blessing to be able to do another mom a favor!  His mom and I have been emailing (she lives in Portland) but hadn't met till today.  I met her online- on the infantile spasms international forum.  She's the 2nd mom who lives in Portland!  So there are 3 of us who have little boys with this rare syndrome. 

Aiden's mom and dad are amazing.  Aiden is actually their grandson - they are raising he and his sister.   What a woman of steel!  We had a good talk - and the best part was meeting dear Aiden in person.  He's 2 - so about 5 mos. older than Cody.  And like Cody he has an angelic countenance that is impossible to explain.  I think it must be angels perching on their shoulders...and the peace of the Lord permeating their little spirits.  These children radiate love and strength.  I can't FATHOM what this family has endured and what Aiden has overcome - yet this trooper still gave me lots of huge smiles and warm gazes.  He's quite a bit less mobile than Cody - he is not walking or crawling.  But unlike Cody, he IS talking and communicating!  Seizures and brain issues affect all these kids so differently.  What one can do, the other can't.  Like me, Aiden's mommy is battling with the same neurologist in Portland...and the same medical system.  The same grieving process.  The same losses.  I knew I had a kindred spirit when she said "I haven't slept in 2 years!" 

Please pray for Aiden and his family if you can.  Like us, they are surviving but life is hard.  Aiden, like Cody, is battling for seizure control.  I pray the two of them can walk hand in hand one day...their angel wings invisible to the naked eye.  Until then, I now have two moms and two little boys who know firsthand what it means to fight this battle...and I know Cody will always have two friends with whom he can feel "normal."  Thank you, Lord, for this gigantic blessing. 

Shawna

July 11

Good news for us - the biopsies I had on my leg are benign!  Only glitch is that the one mole they removed was a certain "type" that almost always turns into cancer so I have to go in every 6 months for life!  Quite a thought!  But at least they're not cancerous...praise the Lord!

I also found out today that Cody has to have leg braces.  Yuck.  I thought we'd get to dodge that bullet when he started walking, but like many delayed kids, his brain isn't talking to his feet perfectly and he's starting to walk on the inside of his feet.  The tendons are getting too loose so he'll have to be fitted for custom made braces that will fit in his shoes and go up past his ankles.  Not the old metal contraptions like Forrest Gump had, thank goodness.  "Run, Forrest, Run!"  Haha.  These are clear plastic at least.  But poor Code-man HATES socks and worse, double HATES shoes!  It will take a month to get the braces created...and in the meantime he has new shoes with 'orthodics' in them which are hard plastic inserts that force his feet to go flat.  He loathes them.  He has to wear them anytime he walks, which is all day.   And when I say he loathes them...I mean that for Cody...wearing these shoes is a 10 on a scale of 1-10 in terms of stress.  He's just never been able to tolerate anything on his feet - quite a common dysfunction among delayed kids.  So my putting the shoe on his foot is a big fat drama.  He cries, he screams, he jerks his foot out, he curls his toes. 

And the whole time I'm totally stressed out at stressing him out!  And I keep saying outloud:  "Cody...this is best for you.  I know you don't understand right now.  But unless you allow this, your little feet won't ever be able to support you.  This is the ONLY way you'll be able to keep walking!" 

And the obvious spiritual corelation comes to my mind every time I put Cody's shoes on.  How often does God allow a trial, a challenge, a painful experience...and as I wrestle away from it...as I shake my fist at Him...as I scream and kick...He knows that what is happening to me may be painful in the short term...but that it's what I need ultimately.  "Every cross is for His profit.  You must be willing to yield to the will of God whenever He decides to remove from you all of the props on which you have leaned. " (Fenelon.) 

I know if Cody could understand WHY he has to wear these shoes, he would yield more easily and try to embrace the shoes as something that will benefit him.  His feet will become more stable.  His balance better.  His steps straighter.  But he doesn't understand.  Right now they're just tight, claustrophic, and cumbersome.  He can't see the whole picture.  But I can.  And every time I put those shoes on, I comfort myself by telling myself how cool it will be when he can not only walk........but RUN....as a result of this short term pain.  I know the same applies to me.  If I could just embrace the pain in my life as a vehicle to get me to a better place - a vehicle that will allow me to RUN someday - it would make the pain so much more bearable.  If I would yield to it instead of resist it.  If I would take God's hand instead of ball my fist and shake it at him.  So many lesons my son is teaching me.  God allows pain - and IF I yield to it and to Him, he will USE that pain to make my life (just like Cody's feet) more stable, my balance better, my steps straighter.  So that I can ultimately, like Cody, walk more firmly in Him and one day, live life so abundantely that I not only run...I SOAR above life's obstacles because I've developed that muscle of suffering joyfully and obediently when it is required.

I saw a great program today on Christians in Iran.  99% of all Iranians are Muslim.  To be a Christian will get you the death sentence.  Yet it showed rooms full of Christians worshipping in secret - hands lifted high - sometimes only mouthing the words to worship songs in unisom, so as not to be caught by making noise.  Just common folk like you and me.  Yet each one has counted the cost and decided that believing in Jesus is worth losing their lives.  They cannot live a lie.  I was awestruck.  Here are these people who could die at any minute....for their faith.  And here I sit in a country where I can worship openly and freely.  It put things in perspective for me!  Having a relationship with Jesus is THAT huge.  People are dying for it all over the world.  Knowing and loving Him is to be so important in my life that it is to eclipse anything else I hold dear.  I get so side tracked.  So myopic.  Growing closer to Jesus and testifying of His work in my life should be so fulfulling to me that I can embrace trials knowing that going deeper into HIM is such a reward that it is worth the pain I endure! 

Yet I carp and moan, fear and fret.  I want comfort and ease.  I shrink from things that hurt.  I feel that somehow, because I have a "special needs" child that my life is over.  That something has gone drastically wrong.  That life can never be what it should be.  But it is forcing me to cling to the Lord for my very life and breath.  It is giving me no choice but to press into Him and count on His promises that He has a future and a hope - even amidst leg braces, MRI's, sleepless nights, brain defects, and eye gouging.  So in a funny way, I guess I'm better off than most!  I'm more forced to rely on Jesus just to get thru every crazy day!  And those Christians in Iran?  They're even better off than me! 

"You have no certainty except in God!  Be careful about looking forward to better things.  Even if the present is bitter, yet it is enough for us if it is the will of God.  His will is our only treasure."  (Anonymous)

love, Shawna 

July 14

Cody had 10 seizures today...8 yesterday and 8 the day before.  His back (and final thankfully) four molars are all coming in at once.  One is halfway thru the surface and is bleeding daily.  I'm hoping hoping hoping that the increase in seizures is due to these molars which are notorious for being the worst of the worst when it comes to teething.  Can he hang on thru 4 molars having this many seizures a day??  Will we have to medicate him?  These 4 teeth could take two more months to surface completely.  Our neurologist was clear that the reason it's okay to leave him off meds is because he was only having 1-3 seizures a day.  Now that they're higher, I'm afraid it just won't be in Cody's best interest to let him have this many seizures a day indefinitely.  I DESPERATELY want to keep him off drugs.  I PRAY we won't have to go that route.  It's good timing to meet with this specialist in Arizona to get his opinion as well.  I don't want to do the keto diet either - and to be honest I'm not sure it's altogether that much less damaging than the drugs are.  I just want things to stay the way they are...Cody off meds with a few or not seizures...and continuing to develop.  WHY do these dumb molars have to come in 6 months early?  Most kids don't get them till they're 2.  One more stroke of bad luck.  When he has 10 seizures in a day - the whole day he is 'off' in many ways.  He's cranky, sleepy, and dazed.  Each one takes a bit to recover from and usually involves crying and some fear.  It just breaks my heart to watch him zone out and look like someone I don't even know.  It's eerie - like Cody's not really "in" there when he has a seizure.  What a bummer.  I really hope that in between each tooth he gets a few days where the seizures go back down so it can be confirmed that it is the teething causing the increase.  It would be easier to bear knowing that it is a waiting game till the molars are in.  I'm trying to give him occasional doses of Motrin or Tylenol but it doesn't really help much. 

Today we did the first step in getting Cody's leg braces - met with the Dr. to get the prescription.  He said it's Cody's "low tone" that is making him walk on the inside of his feet.  Low tone is a result of his brain not talking to his muscles and extremeties so well.  He is strong...but too flexible is the best way to describe it.  Kind of flailing.  Unable to make crisp, definitive movements with his arms, hands or legs.  Everything's kind of uncoordinated.  The Dr. said some kids grow out of low tone as they develop.   Some kids don't.  Some kids wear these for a year, others for life.  No way to know what will happen with the Code-man.  Altho the Dr. said it's not unreasonable to expect that "gross motor" wise (meaning walking, and large motor functions)...Cody may not be a star athlete, but it is possible he will be relatively able to do most anything (walk, run, jump, etc.)  Of course we're still not ruling out star athlete!  We're not ruling out "star" anything!  Star Doctor...Star Pastor...heck, he could be a Star car mechanic, window washer, grocery clerk for all I care!  He's a star to us already.  The idea of him being able to run is euphoric to me.  Maybe even play a sport to some degree!  It wasn't long ago I was planning for his life in a wheelchair - and to think he might be able to run!  Thank you, Lord!!! 

So altho it was a rough day seizure-wise...I'm grateful for this bit of promising news.  I was reminded yet again - being in the rehab center of the hospital - how lucky we are.  I passed a family with a child in a wheelchair whose legs were deformed and who had that glazed over look that so many neurologically damaged children get.  My heart ached.  I know full well that his family would give ANYTHING to have a child as mobile as Cody.  I will remember that child in my prayers tonight.  As I thank God that we are some of the lucky ones.  After a year of non-stop seizures...sometimes 300 a day...our child has rebounded to the point that he can walk.  He makes great eye contact.  He holds my hand.  If anyone would have guessed how a child with that level of seizure activity would be doing...any Dr. would guess that he'd be on a ventilator, a feeding tube, or at least confined to a wheelchair due to all the neurological damage.  But here walks Cody.  Granted he has lots of crazy movements and issues still - but he has shredded his initial prognosis to smithereens.  Way to go, my son! 

Tomorrow we have his first swim lesson - daddy and I will both be in the water with him!  I can't wait!!!  I just know he'll love it.  Then it's a company picnic at Cody's favorite park with his beloved bucket swing and merry go round.  Then we're off to Arizona Monday.  Predicted tempratures for our stay?  113 degrees!!!!!!!!!!!!!!!!!!!  Isn't that what temperature hell is?  Haha.  just kidding.  Not really.....

I'm headed to Target to buy handheld electric fans that are attached to squirt bottles...and you can bet my bottle will be filled with ice water!  Wish us luck!!  I will try to edit my complaints so my poor husband won't want to kill himself.  I'm not so...quiet...when I'm too hot, too cold, or too anything.  It will be a chore flying coach with Cody on our laps - kicking the people in front of him, no doubt!  But I'm sure we'll all survive and hopefully include a little fun at the resort during our 4 day stay.  This place has 8 swimming pools, a toddler pool, water slide, cabanas with fans, and tons more.  And it's super cheap cuz no one wants to be in Arizona this time of year!  I'm just looking forward to no dishes, no cooking, no cleaning for 4 days!  And having Don with us will be wonderful.  We can both get a bit more sleep than normal - and just having this family time will serve us all well.  Even if it is revolving around a hospital visit.  Please pray for wisdom for Dr. Jong Rho as he takes on Cody's case.  And discernment for us as we try to navigate the waters between meds, diets, and seizures. 

We love you all!  Shawna

July 16

Cody LOVED his swimming lesson yesterday!  Don and I drove up to the new community center and our jaws dropped - fresh & sparkly - the pool had it's own lazy river, huge water slide, toddler pool and more.  We nervously made our way to the "waiting area" while watching the previous classes finish up.  "Do you think he'll freak out?  What if he has a seizure?  Do you think all this noise will upset him?"  About the time we'd finished wondering, the time came for Cody's private lesson.  And who should walk in front of us on his way to his group lesson?  FRANKIE!  Frankie, you should know, is Cody's buddy.  They both go to the special needs school - they both have the same physical therapist - Frankie's mom LIVES at the therapy school as I do and we constantly cross paths.  Frank's a year older than Cody - and we've always looked at Frank as what Cody's "shooting for".  He's always been a step ahead.  And Cody's always benefited from Frank's hand me down orthopedic shoes, insoles, etc.  Instead of spending money buying orthopedic inserts for Cody's tennies...Frank's given us his inserts + his outgrown tenna shoes!  It's such a cute sight when Cody wobbles past Frankie in the hall - in FRANK's old shoes!  Frank's mom and I never have much time to talk as we're busy with therapy sessions - but we give each other winks and smiles...knowing secretly that even if our boys don't know it...they're buds!  We stood the two of them up one day - facing each other - to see what they'd do.  I think Cody reached out to grab Frank's shirt...and Frank kind of gave him a look over.  Then they were off doing other stuff.  But in their world, that's tantamount to being best friends!  Frank has perhaps the tenderest face I've ever seen...unlike fair Cody Frankie is dark haired.  And he's just learning to walk like Cody.  He, too, is delayed and doesn't say a lot.  They are kindred spirits!

Now that you know who Frank is...you'll appreciate my joy in seeing him at the pool.  You see, I double-dread events where there are lots of children.  Lots of healthy children.  I'm sure I'll outgrow this phase, but it just hurts right now to see toddlers who are Cody's age but so much more advanced.  In the back of my mind, I'd been bracing myself for the barage of little ones at the pool who would remind me of our uphill battle.  And in comes Frankie - a balm to my wounds.  For the next half hour, there would be another quirky, "un-typical" but adorable little boy in the pool with Cody.  Suddenly I wasn't alone - I knew Frankie's mom was feeling everything I was.  She was probably watching all the other kids and longing for Frank to have less of a struggle in life...just as I do for Cody. What a blessing - and such a personal blessing for me - to have Frank there.  It was as if the Lord was saying..."you may have been dealt this hand, but you can trust that I AM with you.  And in the midst of it all, I will give you just what you need...just when you need it."  A personal gift wrapped up in a package with dark hair and blue eyes named Frank.  

By the way, Cody went underwater three times!  And he didn't even flinch!  He really seemed to enjoy it and wasn't bothered by the noise or the commotion.  He did great!  Not one seizure at the pool.  

We walked out with Frank's mom who shared that they'd finally received a diagnosis.  He has a very rare genetic syndrome where, as I understand it, he will continue to progress developmentally till he's 13 or so - then at that age he will stop progressing and begin to regress permanently.  I can't imagine raising a child and helping him grow and gain new skills -- all the while understanding that at some point it will all stop and go backwards forever.  It is unfathomable to me.  Please pray for Frankie.  His mom said they are dealing with the news and praying for healing - and I beg you to also pray for a miracle for him. 

Once again, I am reminded how lucky we are.  Hopefully the worst is behind us instead of in front of us.  Even if Cody has seizures forever, they will never be the catastrophic infantile spasms that he outgrew.  The new seizures don't hold a candle to what those 6 minute long seizures did to his brain.  If you're new to our story, at the worst time Cody had over 300 seizures a day.  

Cody and Frank...given special grace to endure such hardships.  I pray for the day that we attend Frankie's high school graduation.  Or the day Frank goes to Cody's wedding.  I told Frankie's mom that NO ONE can predict our babies futures.  NO ONE.  We will continue to pray for miracles - to count on them.  I will expect nothing less than that Frank's mom and I will one day be proud grandmothers of Frank & Cody's kids!  Oh Lord, let it be so.  And in the meantime, we'll watch them swim!

Shawna   

July 21

We just got home from Arizona - a trip we made to see a specialist reg. Cody's epilepsy.  Let me just start by saying it was 113 DEGREES the day we arrived.  But it was a really good trip.  We stayed at an awesome resort with 8 swimming pools!  It was super cheap cuz NO ONE goes to AZ this time of year.  Of course I was welcomed to the desert by a 6 inch long black gigantic beetle almost swimming in my hair as I floated on my back in the pool.  As I screamd bloody murder and dashed out of the pool, what should slither across my toes but a SNAKE!  I screamed again..."I HATE ARIZONA!!!!!"  Bugs, snakes and heat.  Not a good combo for me. 

Other than that brush with death, we loved our pool time and chose to hit the water at about 6pm every night when it was cool enough to actually survive outside.  Cody LOVED the lazy river and inner tubing.  Most of the days were spent feeding Cody and getting him to nap - he was up most of the nights we were there.  One day he took a 3.5 hour nap and Don and I got to enjoy our mutual versions of heaven.  Don laid by the pool like a lizard on a rock the whole time - totally unaffected by the heat.  I think he is part camel.  I, on the other hand, chose to sit in the luxury of our hotel room with the air conditioning blasting.  Cody slept next to me on the bed as I got a 3.5 hour dose of my beloved cable TV.  We will NEVER own cable at home because I simply would not get off the couch.  So having cable for this chunk of the afternoon was my nirvana...I watched everything from "I LOVE THE 70's" on VH1 to "Behind the Scenes of American Idol."  Totally meaningless, brainless escapism.  I thoroughly enjoyed every minute. 

The Dr. appt went great - we loved Dr. Rho.  He'd been studying all of Cody's records all morning and came to the appt. very prepared.  The best news was that Cody's current seizure type is not very damaging to his brain.  He said that kids Cody's age are the most vulnerable to seizures and that it bodes well that Cody outgrew infantile spasms and now is contending with a much less damaging seizure type.  Many kids progress into more catastrophic seizure disorders after i.s. instead of getting better.  He recommended staying off meds (whew) and wants us to put Cody on a rigorous low glycemic index diet to try to regulate his glucose levels and minimize spikes which can exacerbate seizures.  He's also recommending a muscle biopsy to search for rare mitochondrial disorders - yuck.  Overall, he's the most positive Dr. we've met in terms of Cody's overall prognosis.  He said these current seizures aren't doing him much harm because they're so short and there's such a quick recovery time...and that we won't really be able to tell what he's capable of developmentally till he's at least 6 or 7.  He said Cody will "probably" be delayed for life - but that the extent of the delay is the question.  He said not to focus so much on the seizures - that they are only a symptom of the real problem.  Whatever it is that is causing the seizures is the real enemy - and the only way to know how much damage it will cause is the test of time. 

He didn't agree that autism is obvious so that was nice to hear.  He said Cody doesn't exhibit enough of the symptoms at this point to point toward autism.  We met with a neurodevelopmental psychologist today that agrees - he doesn't see autism as an obvious diagnosis yet.  whew.  He (Dr. Freeman) helped us come up with some strategies to try to curtail Cody's eye poking.  A 4.5 hour appointment!!!  But he had some good ideas.

That's our update!  We're back home and glad it's the weekend so we can recover from our vacation! 

love, Shawna   

July 26

Cody got fitted for his leg braces this week and I have to say the most ironic part was picking out the "straps" that will secure them to his feet.  The straps have all sorts of patterns...wild horses...racing cars...flames...rockets.  It just made me laugh that every pattern was about the opposite of what these poor kids will be doing in these braces - going fast!  After much debate, I chose the FLAMES!!!  They are bright yellow on a red background and red is my favorite color on him.  So his crazy clunky leg braces will have a dash of excitement!  At least that's what the manufacturer's hoping for.  Kind of like how they painted a racing horse on his walker.  Their way of trying to convince these kids that these contraptions are "cool."  I'm praying that he'll adapt to them given that he hates shoes above all things.  This will have to be a God thing!

Speaking of a "God thing" - we are going to try for baby #2.  YIKES!  I know, I know...crazy, huh.  We've waited so long for Cody's life to calm down but it just doesn't seem that it will anytime soon - so off we go!  I'm 41 and have NO time to waste!  So we'd love prayer for a HEALTHY baby to be!  God's built large muscles in me to deal with the world of special needs...but honestly...I don't think I could do two special needs children!  Course I know many who have gotten that roll of the dice and survived.  The geneticists tell us there's less than a 5% chance of Cody's illness in a 2nd child.  Whew.  But being on the bad end of statistics once, I'm a bit freaked out at what "could go wrong." 

"The grace He gives us will be in direct proportion to the amount of suffering we must bear.  No one else can do this except the Creator who made us and knows how to renew our strength by His grace.  None of us are wise enough to properly apportion grace and suffering.  We cannot see the extent of our future trials, nor of the vast supplies of which God is storing up in us so that we can met them.  And because we cannot see those future trials, nor the grace that will be needed for them, we are tempted to become discouraged and despondent in our present situations.  We see our trials rolling in toward us like great, overpowering ocean waves.  Our hearts fail us with fear at the prospect of drowning.  We do not see that we stand within the point at which God, with a steady finger, has drawn the boundary line.  Beyond that line the waves cannot pass."   Fenelon

I take great comfort in that!  And wherever God chooses to draw that boundary line, I am safe.  Please remind me of this the next time a new trial rounds the corner. ..Haha.  I seem to forget afresh. 

Cody is having about 6-10 seizures a day - and altho the Dr. says they are "not that damaging to his brain" - they are highly stressing to this mother.  But he's also happier, making better eye contact, and is developing more curiosity about the world.  Everytime I take him down the stairs he wants to touch the wall - and stop at our family photo and touch it - and toucht he piano.  He's very into feeling different textures.  The therapists tell me this is great because that's the next step in development.  After being so orally fixated...children branch out and realize that there's a world outside of them.  So I'm excited that he's making that connection.  He touches every window, door, carpet...almost as if to say "wow - look what I've been missing all these months I had seizures!  I have to catch up!" 

That's our world today - thanks for checking in.  We covet your prayers.

Shawna

July 29

Happy weekend to you all!  Poor Code-man is having over 20 seizures a day.  I have a hunch another back molar may be on the way.  Whenever new teeth pop in, seizures spike.  I hope that's what it is.  Cody is highly grumpy which also contributes to my hunch.  The neurologist didn't want to give him a sedative or anything, for which I'm grateful.  I guess we will ride this out a bit.  But it's quite disconcerting for him and really wears him out to have so many seizures in oine day.  And it wares me out watching them.  Please, Lord, let these seizures finally leave my son! 

I had his 1.5 year photos scheduled today with our dear friend and PHENOMINAL photographer Jenny Benge.  I was so excited - Cody had just woken up from a 3 hour nap, had a fresh bath, and was giggly and happy.  FINALLY  a photo session where he would at least be in a good mood and hopefully smile!  Poor little guy turned into a sour puss within moments of the camera turning on.  Jenny managed to get some good shots nonetheless, which is a testimony to her expertise.  But it was frustrating.  I'll post them on this site as soon as they're done! 

On the good side, I played detective and solved Cody's hunger strike!  He's been refusing food for a week straight.  I've pureed everything as I normally do - so nothing was new.  He wouldn't even eat yogurt, his favorite.  Yesterday on a hunch, I threw some crunchy chips on his tray and he swiped them up and gobbled them down.  Turns out he just wants to chew!  Unfortunately his tongue and throat aren't quite coordinated enough to chew much - so it's gotta be frustrating for him.  I ran to the store and searched for things that would work:  fixings for PB&J, veggie dogs, chicken nuggets...and we've spent the last day trying them.  It's kinda fun!  He hates turkey bologna.  Loves chunks of banana and avocado.  He'll tolerate a scrambled egg (not pureed, either!  less work for mom!)  It's kind of fun and exciting watching him try new foods - but scary cuz he chokes a lot so I'm working with a swallow therapist to make sure we're doing things right.  I like it that he's so definite about his likes and dislikes.  I like it that he is evolving developmentally a bit and is driven to chew.  So that's been fun.

That's all the news from our corner. 

With love, Shawna