June 2

Our little guy is still chugging along.  We have not stopped singing to him.  Our repertoire includes:  "Walking Man" by James Taylor.  "Walk this Way" by Aerosmith.  "I'm walking....yes indeed, I'm talking...bout you and me" by Fats domino.  If you didn't notice, "walking" is the theme for the week. 

Our spirits are soaring over the walking, but kinda bumming over the reflux problems.  Cody's been up screaming the last week at night and can't take a nap without doing the same.  He's got the reflux blues.  I just can't believe how we swap one huge issue for another.  This poor little guy has more crosses to bear.  Please pray for relief and SLEEP.  I've got migraines, canker sores...Don's having stomach problems...I think the stress is just wearing us out.  His arm brace is stressing him out too - he typically does lots of repetitive hand motions.  He claps, bangs his hands together, chews on his hands.  And he can't do any of that with his arm in a cloth cast.  But at least he's not poking his eyeball anymore.  I guess you trade one set of problems for another.  I just sense a lot of stress in Cody.  I'm sure being weaned off all these high powered meds is stressful on his system.  Add reflux, an arm cast, and no sleep and that paints a pretty bum picture. 

But I always love Fridays because it means I get companionship over the weekend and help and sleep!  Plus Cody just LOVES spending time with Daddy.  Cody beams when Don walks into the room.  And their brand of rough housing is something mommy's just not good at.  Sometimes Don takes him out for a stroller walk alone and I am so impressed that without me reminding him, he gets out the 50+ baby sunblock & smears it on...he gets Cody's sun hat...or if it's raining he gets out the raincoat and rainhat.  Don really gets the details right where Cody's concerned.   He's even mastered cleaning up after a meal - which means wiping the green slime off the walls...putting the dishes in the dirty dish bin...wiping down the high chair (and Cody) and putting the bib & rags in the hamper!  Pretty impressive, huh!  I have a great husband.

thanks for reading and happy Friday!

Shawna

June 4

Hi there!  The "video" section of this site now has lots of videos of Cody and the BEST is of Cody walking!!!!  We just shot it today and it is adorable if I do say so myself!  He has walked NON STOP all weekend.  One night he stood up in bed (still asleep) and proceeded to try to walk across the mattress.  I laid him back down and he fell back to sleep.  I think he's even dreaming about walking!  It's been SOOOOO much fun!  In the few days he's been walking, he's now up to about a minute without falling.  We are thrilled, proud, and humbled at our good fortune. 

David Arnold, who created and runs this site has taken the time to add videos of Cody and I am so grateful!  Thanks, David!  Just click on "video" on the right of the home page. 

Cody's had a wonderful weekend.  He's been smiley, alert, happy...and yes, walking.  Wed thru Fri. was horrendous.  He was constantly eye poking, wrist biting, crying...I have no idea what was up.  He really seems to have settled down, no doubt thanks to the prayers of many loved ones.   That's it for now, he's tuckered out and ready for bed!

love to all, Shawna

June 8

Am I the only one who can't believe it's June already?!?  Cody's supposed to go swimming for the first time but I fear the sun won't cooperate. 

Things are still moving along.  He's officially off ALL his anti seizure meds!  Still having seizures, of course, but at least they didn't increase during the drug wean!  And he's still walking all over the place.  Don and I are EXHAUSTED.  How come none of you told me how much more work it is when they walk?!?  Ha ha.  Be careful what you wish for!  Our back are killing us from constantly bending over to buffer him on all sides.  I'm headed to the chiropractor today as a matter of fact!  I feel good that Don is also in pain because that means it's not just me being out of shape!  We showed Cody's physical therapist our little walking man yesterday for the first time.  His PT said "this is monumental.  This is HUGE."  He said he hadn't expected Cody to do this - it was pretty sudden and spontaneous.  His PT was thrilled and showed me how to help Cody learn how to stand up without someone helping him.  He can motor along alone...but it's the getting into the standing position in the first place that he can't muster yet. 

We still battle this darned eye issue. Now that the restraint is on, Cody is smushing his eye against his knee cap!  I guess he just craves that sensory input of stars and halos that he gets when his eye is squished.  It just is the grossest - his eye is bright red all the time.  He's also taken to chewing on his knees till they're raw.  From wrist & knee biting, to eye poking, to hair pulling and clawing at his legs...his occupational therapist says it's all about self stimulation.  Somehow these neurologically challenged kids need constant 'input' into their bodies.  Cody craves deep pressure hugs, he is constantly chewing on things...he just wants sensory input at all times...even if it's negative (like biting himself.)  She said they usually grow out of this phase as their vestibular system calms down.  We're hoping that the deep pressure his joints get from walking helps to calm the rest of his system down.  It's exhausting.  Even just now I had to rush over to grab him in his Johnny Jump Up because he was biting his wrist which was bright red and he'd wrangled his arm restratint off and was poking his eye with his other hand.  I feel like I have to have eyes in the back of my head.  There is literally not one second of the day that he doesn't have to be watched.  Even when he sleeps he does these crazy behaviors.  Please join us in praying that his body calms down. 

Would you believe that some people still do self injuring behaviors into adulthood?  One person I read about literally gouged his eye out.  There's a whole segment of the population that does self injury - most of them are autistic or have a neurological issue.  Many have lowered pain thresholds.  WHO KNEW my life would lead me into  these crazy situations?  

I've been obsessed with Joni Earkson Tada lately - she's a paraplegic who lost all movement from the neck down in a diving accident when she was 18.  She's now in her 50's and has founded an organization to distribute wheelchairs around the world to kids who dont' have them.  Her ability to praise the Lord FOR her wheelchair amazes me.  Here's one quote from her website:  www.joniandfriends.org

"Time and time again, God shows us that suffering refines our faith (I Peter 1:7), builds character (Rom.8:28), and draws us closer to Christ, to name a few for “To this [suffering] you were called, because Christ suffered for you, leaving you an example that you should follow in His steps’ (I Peter 2:21). Healing is an earthly fix... I’m looking for the long term benefits which hardship will gain me in heaven for “those who suffer with him, we shall reign with him” (2 Tim. 2:12). I want what God wants; if it’s living in a wheelchair, fine; if it’s being healed, that’s fine too. I’ve learned to be content in plenty or in want."  

I marvel at the way she says her wheelchair has become the gateway to unbelievable intimacy with God.  I hope to meet her someday...and in the meantime I'm reading her book to try to glean a portion of her attitude. 

love to you all, Shawna

June 9

Well we never did make it to the pool for Cody's first foray into the water.  Too cold.  Maybe next week.  I have his little inflated boat all ready with it's own sunshade overhead.  I got him a way-cool pair of swim shorts.  I have the 50+ sun screen and the swim diapers.  Now all we need is some sun! 

We've decided not to move - but instead to move everything we need to the bottom level of our house!  Brilliant idea, huh!  We'll still sleep upstairs, but for Cody and I, all living will take place downstairs.  No more hiking up the stairs with my 35 lb. baby 10 times a day!  We were thinking of moving to a 1 level but that's just way too ambitious for the amount of time we have right now.  Plus, we love our neighborhood and our house & yard.  So for now, we will improvise and see how it goes.  We've used our dining room table 1 time in the last 3 years, so we'll just move the whole formal dining room to the garage and set up a nursery there instead. 

Cody's getting even steadier on his feet and makes a dandy motorboat sound with his mouth as he cruises around the house.  He makes pitstops every time he finds himself in front of a window or full length mirror to admire himself.  Quite cute.  He's still scared to walk into the bathroom - must be the colder tile.  Plus the light's always off.  Every time we walk past it he peers inside and immediately chugs right past it. 

His eye poking seems to be a bit better...and he seems a tad bit less obsessed with chewing and biting himself.  The last few days he's really seemed to calm down and come into his own a bit more.  Today he smiled ALL DAY.  I can tell the drugs are wearing off.  If only he'd sleep better - that's our hope and prayer!!! 

That's it for now - love to you all from the Graves household!

Shawna

June 12

Cody's eye poking is much better - as is his other "self injurious" behavior as they call it.  He seems to be calming down some.  Whew.  He's till doing a bit of eye poking and knee biting...but less.  And he's still walking up a storm!  Of course, sleep remains an issue.  No matter what time he goes to bed or how many naps he's had (or not had) in a day - he gets up from about 3-5am every night.  I just don't understand - now that he's off drugs I thought sleep would be the first thing to settle down.  I know delayed children often have trouble sleeping.  Maybe it wasn't so much the drugs...but is more just a funciton of his brain or nervous system.  Please keep praying about this area.  Don and I just took turns taking naps all weekend during the day.  Not much fun when that's all you do on your weekends...take turns catching up on the sleep you missed last night! 

If you've been reading these posts awhile, you'll remember a little boy named Jameson who lives in another state - who passed away recently from the same syndrome Cody has, "infantile spasms."   I got to know about Jameson because his mom was on an international online forum for parents of kids with 'i.s.'   Us moms write back and forth - giving each other tips, encouragement, discuss the latest new "drug", etc.  Today his mom honored us with some of what she's learned: 

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Jameson's mom is right...I am becoming so much more than I was.  Thank you, Cody.

Shawna

June 17

Hi there!  I haven't posted in a bit - but things are moving along.  What a week!  Cody had a swallow study X-ray at OHSU this week - quite an ordeal.  They put barium in his food - then he swallowed stuff and I got to see his actual skeleton and organs as he chewed food and it went down his throat!  Weird!  It showed that some of the food goes down his windpipe (ouch).  So we go back in this Wed. for an esophageal swallow study to make sure he's not aspirating...and to see how bad his reflux is.  The reflux is unrelated to his epilepsy.  The swallow issues are because of his "low tone".  Kids with neurological delays often have trouble coordinating their mouth & throat to swallow properly.  So guess what this will mean?  More therapies!  Altho more Dr's visits will be a pain, I will be thrilled when Cody doesn't choke on food. 

We also saw the genetic team at Legacy hospital as well as their Dr. of Development who are all tracking Cody.  They are wonderful.  They are sending his (and our) blood to Italy for a rare genetic test that isolates a Rett's like gene in boys.  "Retts syndrome" falls within the autistic spectrum...but only happens to girls.  They think there may be a gene, though, that occurs in boys too that is "Rett-like."  I'm just glad they're still interested.  Cody's little buddy Joey who lives in Oregon (whose mom I have become fast friends with) was there too.  They are sending Joey's blood along with Cody's because they are very very similar in all their characteristics.  They're the same age and both have had infantile spasms for the last year.   

The big fat bummer about the appt. was hearing (once again) "your son will never be normal."  You'd think I'd stop asking the question but I guess I'm a glutton for punishment.  They said that Cody's inability to communicate - not just verbally, but in any form, is the biggest predictor of his cognitive future.  They said even if he could point to me when someone said "where's mommy"  it would be a better prognosis.  He really only knows his own name, if that.  I told them everything he CAN do.  He pushes a button to make his toy sing.  He taps me on the hand to keep me pushing his swing.  He lifts his arms to be picked up.  But they said those are different than knowing and understanding words and language.  I told them I'll never stop hoping and believing I'll hear him speak one day.  It is so hurtful to have your child "evaluated" so starkly by people who don't really know him - or spend any time with him.  These Dr's are really great compared to most...but I want to scream, "you DON'T see everything he can do!  He is IN there and is SO smart!  He can do SO much!"  I fall more in love with him every day.  And I see more and more every day how much he is capable of.  So instead of listening to the Dr's, I wait to hear God whispering the Truth of the matter into my heart. 

Don was with me at the appointment, thankfully.  This is the first time in awhile he's been able to go.  It was so nice to have him there to absorb such stark comments with me.  And to have him take Cody in for the dreaded blood draw.  I waited outside with Joey and his mom - we traded somber smiles and said, once again - "can you believe this is really happening?"  Then it was Joey's turn so we hugged goodbye.  So much life happens within children's hospital walls.  Profound embraces.  Horrifying prognoses.  Toddlers walking by with chemo drips.  I want to go to every parent in every waiting room and give them a back rub.  Take them out to dinner.  I want to hold every child's hand.  Such Holy ground. 

That's it for now - Don's out golfing for his father's day luxury. Time to get my guy a' walkin'! 

love, Shawna

June 18

Cody got daddy a pair of Maui Jim sunglasses for Father's Day!  Don was thrilled.  I also gave him a card with pictures of all the things he and Cody do together:  watch golf, football & basketball...go for stroller walks...practice walking all over the house...going for drives.  Don is a great dad.  He even took Cody overnight both nights this weekend so I could rest my back.  Now that our little guy is walking, I'm constantly leaned over and my back is wearing out! 

It's been a funky weekend.  Cody's weird repetitious behaviors have gone a bit crazy.  He's constantly biting his knees or wrists, poking his eyes, trying to bite us, and clawing at his inner thighs.  We try everything to calm him but nothing much does the trick so we just wait it out and keep his arm restraints on.  I wish I knew why these behaviors flare when they do.  He had 6 seizures yesterday which also was a bummer.  He's even hard to hold right now because he's constantly pulling his hair, banging his head with his fist, kicking me, scratching at the chair.  It's like his limbs just have to be moving at all times. 

On the bright side, he's eating up a storm!  And he's walking up a storm!  I just keep praying for peace in Cody's body.  For calm to overtake him so he doesn't feel he has to be injuring himself and constantly moving.  Rest, peace and calm.  I guess we could all use a dose of that, huh! 

That reminds me of some words from my favorite author, Fenelon:  "Live in quiet peace, without any thought for the future.  For only God knows if you have a future in this world.  In fact, you do not even have a today that you can call your own.  A Christian must live out the hours of today in accord with the plans of God, to whom the day truly belongs.  We can learn a lesson from babies.  Babies own nothing - they treat diamonds and apples alike.  Be a babe.  Have nothing of your own (It all belongs to God anyway!)  Forget yourself."

oops better go, he's waking...love to you all, Shawna

June 22

Hi there!  We had a good report from our neuro today.  He sees cody every 3 months and said he was "thrilled" with how he's doing off all his meds.  The best news for me, is that the Dr. said as long as Cody's seizures stay around 1-3 a day, we shouldn't medicate him!  He said it's not worth the trade off.  These high powered meds cause delay themselves and Cody's seizures are small and infrequent enough that they are less damaging than the meds would potentially be.  Whew.  So my crazy idea has paid off!  Since coming off meds, Cody's seizures have dropped by half...and we are being told to stay the course and keep him off meds!  Of course the Dr. didn't say "good intuition, Shawna" or "way to think outside the box".  I've long ago stopped hoping for any positive affirmation from the neuro world.  But I get the personal satisfaction of knowing that we trusted our instincts and took a risk...and so far it's paying off!  We are going to Arizona on July 19 to see a new specialist that our local neuro recommends.  And other than that...we're just going to do what we're doing and hope that the seizures disappear completely.

If you happen to ever throw a prayer up for us, would you please pray for my migraines?  I've had a migraine for 2 months straight with only a few days of let up.  For me, migraines are stress induced and I think our constant state of craziness has caught up with me.  I'm meditating on Philippines 4:6-7 "do no be anxious about ANYTHING but in everything, by prayer & petition, with thanksgiving, present your requests to God.  And the peace of God which transcends all understanding, will guard your hearts & minds in Christ Jesus."  Just one hospital appointment can get me stressed.  It takes an hour in traffic to get to the hospital...we have to scratch and claw to find parking...we are always left in the waiting room for at least an hour...then there's the actual appt. where I usually hear bad news...then it's fighting traffic back home.  All the while I'm paranoid of every receptionists phone that rings - that it will give Cody a seizure.  And we  have a Dr or therapy appt. every day of the week...literally.  That plus very little sleep keeps the migraines alive and well.  Thank you if you are able to help pray them away!  When I remember that verse..."do not be anxious about anything"...I realize what a difficult scripture that is to fulfill!  NOT be anxious????  How do you do that????!!!  But as I meditate on it more and more, hte idea is taking hold.  I'm more aware of when I'm anxious - and when it happens - I know that scripture says not to do it!  So I do what the Word says and immediately take it to the Lord and pray the anxiety away.  That's on a good day....on a bad day I just stress out and look for chocolate.  :)

We've added "chew & swallow" therapy to our roster once a week now.  Cody's reflux study showed that he is STILL refluxing even on the highest dose of Prevacid.  It is completely unrelated to his seizures.  We have to thicken everything and try to help him learn to swallow and chew food differently.  Oy vay!  Poor kid just got a bad draw of the gene pool! 

Last night we had such a fantastic time at a local park.  Our home group met there to celebrate a birthday.  And the minute I arrived Cody was out of my arms in the loving care of a parade of friends who walked, played, tickled and loved on him.  It is truly the first time since his diagnosis that I've felt like life with Cody was ...........normal.   As I chatted with someone, I looked over their shoulder to see Cody bounding around on the grassy hill with two friends.  Another friend came up and scooped him up and hugged him.  Then they all took his shoes off and let him frolic with the grass between his toes.  He looked like any other little toddler having the time of his life.  Then we took him on the swings and the merry go round.  We ate BBQ and I gave him his first bites of watermelon and BBQ potato chips.  It felt so darn normal I was giddy.  He is such a dear little soul - and such a huggy loving child to everyone who comes near him.  Thank you Lord for giving us a glimpse of plain old simple fun with my little guy.  

Shawna

June 25

Whew - we actually did a lot this weekend!  After sequestering Cody for months...we are trying to get out and about a bit more and experience life.  His seizures are getting fewer and farther between which helps us feel a little more secure with taking him out in public.  We went out to dinner with him Friday night - Rocky's Pizza - which induced one seizure from the noise in the restaurant.  Always puts a damper on a meal out when your child slumps over in his chair and his arms and legs stiffen for 20 seconds!  But we recovered and were brave enough to venture down to Keizer  Saturday  - about an hour and a half away - for Cody's grandpa's birthday party.  That went great - not one seizure while there but one in the car on the way to and from.  Grandpa lives adjacent to a golf course and Cody LOVED walking on the soft short grass...I'm sure it felt velvety smooth on his little toes compared to our front yard which is full of prickly weeds and potholes! 

Today Don and I went to a wedding sans Cody!  Our dear neighbor Jenny watched him and Don and I had a blast!  For the first time in over a year, we DANCED!  Any of you who know me at all know I LOVE to dance.  Unfortunately, my husband does not share the same passion for dancing that I do.  Well, let's be honest........he HATES dancing.  Luckily his desire to please me overshadowed his dancing aversion and we hit the floor at the reception and cut a rug!  It was wonderful to get away together - something we don't do nearly enough of.  And Cody did great with Jenny!  She said he smiled the whole time!  I'm so blessed that God gave Cody such an endearing counetnance.  He loves everyone and is never gets upset when he wakes from a nap and there's a new face for him to play with.  Makes us feel much less guilty leaving him the few times that we have. 

I just feel in my gut that these seizures are leaving.  We're down to just 1-3 a day which is a large improvement.  Please, Lord - take them away entirely. 

Sleep continues to plauge us.  Last night Cody didn't fall asleep till midnight - ugh - and woke up for the day at 5:30am.  Don and I spent the whole morning and afternoon taking turns napping.  I pray for better tonight...especially since a fresh migraine has kicked in.  If you've prayed for my migraines, thank you so so much.  I went about 5 days without one till today which was a wonderful break!!  If you find time, please continue to pray for these darn headaches.  They are stress induced and altho I go to the chiropractor once a week....they will not abate.  I've tried every drug, every remedy, avoiding every food trigger...they still persist.  Thank you so much.

Have a great week - we love and are grateful for each of you who checks this site.  Your care and concern means everything to us.  We pray for you often.

Shawna 

June 29

I had to share the photos below of Cody's day in the sun with his neighbor Rebecca. 

 He had his first ever time in It was his first time in a baby swimming pool!  Didn't like it much but I just signed him up for swimming lessons so that should be fun!  I found a teacher whose students are special needs in some way.  She even has two girls who have no arms!  This is the company we keep these days - miracle children.  It's amazing how your perspective changes when your peer group is kids who aren't normal.  The norm for Cody and me is to be surrounded by children without limbs, in wheelchairs, bald, wearing helmets, etc.  And you know what?  I've never been in finer company.  My heart has become so compassionate toward those that the world would see as weak or sub-par.  In a world that values perfection at any cost, it's a privelidge to see the beauty in these children.  Scripture says this about weakness:

 1 Cor 1:27 (NAS) ...God has chosen the weak things of the world to shame the things which are strong.  2 Cor 11:30 (NIV) If I must boast, I will boast of the things that show my weakness.   2 Cor 12:9 (NAS) And He has said to me, "My grace is sufficient for you, for power is perfected in weakness." 

I just love those words and how they remind me that in the Lord's economy, weakness is not bad.  In fact, His power is perfected in weakness!!!  That means these little ones are awesome examples of God's perfected power!  I feel sorry that everyone doesn't run with such a Holy crowd!  It is an honor - every child I meet.  And to think I get to live with - and raise such a child!   

But back to the swimming lessons...Dad's going to be in the water too - a family affair!  I love it that Don didn't want to miss out on the action.  I'm sure many wives would give anything for their husbands to ask if he could go to t heir child's swimming lessons and actually get wet to boot!  These pictures crack me up - Rebecca is so petite and delicate and Cody looks like such a bruizer next to her!  Especially the one from behind - he is such a block - he looks like a 40 year old man sitting there!  Hysterical.  I love my huge son.  And I love it that Rebecca rivals Cody for who has whiter skin!  They are soul mates!  Rebecca's a cute little redhead and as you can see, Cody's looking in the other direction playing hard to get! 

We had one day with NO seizures this week!  He had 2 yesterday and 1 so far today.  I definitely think they are getting dimmer and dimmer.  I pray so.  Our week was filled with therapy appointments.  His gross motor skills (walking esp.) are doing great - while his cognitive skills are pretty much frozen.  I am praying that the Lord unlocks the door to speech and communication for Cody.  He has an MRI next Thursday which always makes me nervous.  Because of all his reflux issues, he requires a sedation team & anesthesiaologist - quite a big deal.  The neuro wants to get a new look at his brain now that it's developed a bit more. 

My headaches have been much much better!  Only had 1 in the last week!  I sure hope that trend continues - thanks if you had time to pray for me!  I better go tend to my herculian child.  I can't imagine what I'd do if he weren't walking - he's 3 feet tall now!!!!  and 33 pounds! 

with love, Shawna

June 30

As is often the case in this crazy journey - life turns on a dime.  Cody's had 8 seizures today - spent most of the day screaming.  Not sure why, or what's going on.  His reflux was acting up...but that wouldn't cause so many seizures.  I was so excited that they were on the downslide.  But perhaps that can still be the case.  I rarely freak out over one day's events.  They so often change by the next day.  Please pray for him if you can.  And for me.  Today was horrendous.  We had an MRI scheduled for this Thursday and 10 phone calls from OHSU later, they messed up the diagnostic order and booked him for the wrong kind of MRI.  Their answer was to do the MRI in two pieces...one on Thursday and one later in the month.  That would require two sedations instead of one.  Bad idea in my book.  On top of that, I had scratched and clawed my way to get the metabolic team to do a lumbar puncture during the MRI while he was sedated so we wouldn't have to do a separate sedation for that too.  Now I'm not sure how this is all going to work out.  Time is of the essence because we're doing the MRI so we can take it with us July 17th when we see the expert in Arizona.  I hate the world of sedation and punctures - two things I can't stand having done to my son.  The lumbar puncture is recommended to make sure he doesn't have any rare metabolic disorders.  Sounds horrible to me.  It's just grueling dealing with all these Dr. people on the phone.

And to boot - I went to a dermatologist today to have a bump on my leg looked at.  It's a little thing but I wanted to be safe.  The dr. said it's a tumor and he removed it immediately.  They went down thru all 7 layers of skin so it was a fairly nice sized chunk they removed.  They're sending it to get analyzed.  The Dr. said he'd about 90% sure it's non-cancerous.  But we'll have to wait and see.  He also removed another suspicious mole to send in.  So I have 6 stitches and a huge bandage on my thigh!  Not what i expected when I walked thru the doors of his office today!  I thought he's say, "that's nothing...see ya."  Not so lucky.  So all in all, not a great day for me or Cody. 

I pray tomorrow is a better day.  We're taking him in for his year and a half photos - hoping the camera sounds and such don't set off a bunch of seizures.  I'll post the photos on this site.  He's so adorable I can't imagine him taking a bad picture!

love to you all, Shawna