Christmas day came and went. Santa came to visit and brought him up SO many toys, although he was so doped up I'm not sure he even realized. His eye was swollen shut and he was sleeping most of the time because of the constant anesthesia from all the tests. I went downstairs to a service and prayed my heart out.

I was a basket case when they took him to surgery on the 27th. I didn't know what I would be getting back. The surgery went on for about 5-6 hours and then the surgeon came up to tell us he came through fine. His motor strip wound up not being anywhere close to the parts they were removing. I breathed a sigh of relief and waited to see him. He was wheeled up from surgery and within minutes was trying to sit up and lay on my lap. Later that day, the surgeon and neurologist came in and told us to be cautiously optimistic. Not my favorite words! I pretty much just readied myself for a few less seizures after all of this.

On the 30th Frank called and said James would be released on the 31st after an EEG. I freaked! I knew it was common to have seizures after surgery and I felt it was almost unfair to make him have those electrodes glued to his head that had a huge wound on it.  We got there and I felt like I would puke the second I saw the doors going in to the hospital. I called Frank and he told me that James was so upset that he had a 'jerk' during the application of the electrodes. That was it for me. I just knew then that the surgery had not worked and the doctors were right that there would be activity showing on the EEG.

We came home and my parents stayed for dinner. James was unnervingly calm and I decided it was because something was wrong. We were told to expect them to find activity on the EEG. We were told that we should hope for 50-75% improvement. I waited for the results to come in and was told to call today. James has never in his life had a clean EEG, so I didn't think he would now. She said "O.K. Sue we have the results of James EEG." I seriously thought I would pass out.. "There is no epileptiform activity on his EEG Sue". I screamed and started to cry. She then said "Sue, we did it. You did it. We got it."

I have never received a better Birthday gift, Christmas gift, gift in general. My daughter was right, God did make James better after he made Jesus Birthday cake. I know that there may be a time when we have to battle this again, but for today I can say my son is seizure free. It will now be an uphill trudge to get him learning and developing again, but I am always up for a fight!

Shawna, I SO wish I could have called when we got the news. You were one of the first people I thought of when we found out. I have always believed in miracles but never have been granted one. I can truly say that for this moment in time, all the tears and heartache are worth this feeling.

Sue"

---------------------------------------------------------

Oh I can't tell you how THRILLED I am for James!  What a grueling odyssey - but he is doing great!  That is what we *may* be looking at Cody although the chance is pretty small.  But that's what our upcoming EEG is all about - seeing where the seizures are coming from to see if they can be cut out surgically.  James has been SO heavy on my heart - knowing what he and his family were going thru this Christmas while all of us were opening presents and eating Christmas cookies.  This is my peer group - families of kids with seizures.  I couldn't be in better company!  When there's a good news story like this one, it gives us all so much hope.  Although for Cody, the surgery would be what they call "palliative" meaning it would only decrease the seizures, not cure them, because his seizures come from too many places in his brain.  So we wouldn't have the success of James - but perhaps it would improve Cody's (and our) quality of life.  We'll see.

I am still praying for no seizures by Jan. 14th to avoid this whole EEG 7-day stay - so feel free to join me in that prayer!!

with love,

Shawna

Jan 3, 2008

First day of school!  Check out the photos - too cute.  Don took the morning off and wanted to be a part of it.  Cody was set to go wtih his big boy backpack (stuffed with diapers and wipes)

Jan 8, 2008

Oh boy, what fun - Casey got to experirence his first bite of food today!  He's 6 months old this week and it's about time!  So here you go - I chose sweet potatoes!  He has little red spots on his cheeks because we're battling eczema in case it looks funny.

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We made it through a bit of sweet potatoes and finished up with the all time gold standard for first foods - rice cereal!

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Jan 11, 2008

Okay, I often post something I think is a "must see" and this is one of those times.  Check out the video "99 balloons" on this site.  http://www.ignitermedia.com:80/products/iv/singles/570/99-Balloons

Then go to the blog:  http://www.ninetynineballoons.com/

Truly remarkable.  And beautiful.

love, Shawna

Jan 12, 2008

Hi there - happy Saturday to you!  We are enjoying today.  I got out for 2 HOURS all by myself!  Course it was just to grocery shop, but still!  To me, that's as good as a trip to Vegas!  No kids...no diapers...no meals...no seizures...no drool...you get the picture.  I leisurely strolled up and down every aisle.  Grabbed a people magazine and looked at the pictures.  Brittney Spears...oy vay.  One word:  COUNSELING!  Ya gotta figure though - living in a fish bowl like she does would drive anyone pretty nutso!  But I digress....

I had two such sweet times putting Casey to sleep.  He lays next to me on the bed, nurses for awhile, starts to drift off but opens his eyes one last time to make sure I'm there.  Then he floats off into dreamland, safe and secure.  It is such a rapturous thing to usher your baby into sleep time.  I'll never get enough of it.  As I've said many times, this trial with Cody has given me many gifts, oddly.  Probably one of the biggest is to be "in the moment" most of the time.  Not many things go by without me noticing.  I watch Casey sleep - watch his chest move up and down - look at the curve of his little fringe of eyelashes.  I soak him in.  I pray for good health for him - for no seizures.  I hold his hand.  I let no moment go by without trying my best to drink it in for all it's worth.  We have but 1 chance with these little ones - they are grown up in a fleeting instant.  Now that Cody's off to school each day I have a bit more time to enjoy Casey and I triple love it.

Cody did great this past week at school I'm told.  He went from 8:30 - noon the whole week!  He comes out pretty tired, but that's good.  His daily schedule includes circle time, recess, snack, "table time" which means working on different skills with toys and such,free play, lunch, and home.  Right after I drop him off at 8:30 I go home and snuggle up with Casey for his morning nap - YUM.  I usually don't stay cause there's too much to do - but I enjoy the process.

Cody's still having about 25-50 tiny seizures a day.  He's in the WEIRDEST phase.  Who knows why, but right now he's OBSESSED with sounds in his ear.  He'll walk up to me or Don and tilt his head - cueing us to make a sound for him.  He listens with his ear pressed up against our mouth - jump off our lap - go hit something with both hands (SMACK) and then climb back on our laps, poke our mouths and cue us again to make a noise for him.  Sounds cute, right?  I thought so too until it went on for the last 3 days!  I'm talking - nothing else.  He does this repetitively all day and all night.  And when you won't make a sound for him, he cries and is totally undone.  In addition, he's scratching himself more (self stimulation), masturbating, eye poking - all his negative behaviors have flared.  I don't know if it's extra stress from starting school or what.  I took him to the Dr. to make sure it wasn't an illness and he said Cody does have a red throat which could be a cold coming or going.  But he's had tons of colds and sore throats and he's never acted this way.  I'm not sure what to make of it.  Like most of his weird quirks, I expect this new thing to come and go over time.  Sure is weird.  It's like he gets obsessive over things.  And since he's been this way, he won't go to bed or take a nap.  He fights it and fights it - looking for more noises in his ear.  He doens't go to bed till 11pm and is up at 5 or 6 am.  We've tried everything to get him to wind down, go to sleep, etc. but he just won't.  I pray he calms down before our hospital stay monday because this will be torture there.  If your child has done this, please write and let me know if you figured out what it was!

I've been enjoying reading the posts from the website I quoted yesterday www.ninetynineballoons.com.  If you didn't visit the site, this dad's precious son Eliot died after 99 days of life from trisomy 18 - a genetic defect.  Here's an exerpt from his dad's blog about grief:

"A question has been bumping around the recesses of my mind as of late.

What is the destination?

I have come to view mourning as a journey. Let me be the first to admit that sounds a little hokey, but come on, let it slide.

The pathway is littered with obstacles, each differing in degrees of difficulty. A recurring hurdle of hardness-of-heart here, a pothole labeled despair there. Unforeseen twists and turns are the norm; all the while, the lone desire of the traveler is to stop - to rest. However, it is quickly realized that pit stops are dangerous as well. For it is here that the strangers, with names such as Fear and Skepticism, attempt to become traveling companions.

There is an alternative to traveling the road of mourning that can sometimes seem appealing. The idea that I can stay here and not go down that road at all appears the better option. However, one comes to learn that the road is not actually optional. It must be walked. Attempting otherwise only delays the journey; and each day left unwalked increases the toll that is charged for passage.

And so I have walked the road. It is only recently that I have wondered where it leads. What is the goal? Where does it all end?
Does this road have a destination or is my status now permanently that of a nomad with no home - walking a treacherous road without end.

I have come to a settlement on this question of mine. Bad news first. The road of mourning does not end on this side of eternity. Ginny and I will not reach the end of our heartache. We will not arrive at “all better”. In truth, our loss is a permanent scar whose effects have only just begun.

But we do have a companion on this road who has traveled it himself. Who, alone, makes the road bearable.

And, although the journey does not end it does head toward something. There is due north. And the compass points to the love of Jesus Christ. The further traveled, the greater the understanding. Never attained, but closer still.

Thus, the river of grief flows to the same sea that all of life’s rivers flow towards. Even if one has never known pain, his is the same road as mine. All of life’s experiences- including Eliot- direct me to my home.

And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge
Ephesians 3

Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.
I Corinthians 13

Jan 16, 2008

 

WE'RE HOME!  It's Wednesday and we are all four back in our cozy home.  Boy was it good to leave that hospital!  Although there were a few fun moments like when Casey arrived in his own personal taxi cab!

 

We also got really smart this trip and moved the bed out of the room and made a play area on the floor in the camera range.  They had a huge play mat and we pulled the mattress off the bed.  Ya gotta think out of the box when you have a Cody!

 

Here is my little hero boy - and the zillionth time he had to wear this electrode turban.  When he walked in the door at home he was SO happy to be free of the electrodes, the wires, being tethered to the room, and able to roam freely in his playroom!  His head is full of glue but we don't care - he's home and we can hug him without the smell of wires and paste!  We are sleep deprived and grumpy - but happy at the same time that it's over.  Thanks to Paula (we loved the balloon and cookies!)  And Kris, and Shoshannah and Jill - you guys helped so much!  And thanks to all of you who were on the list but didn't get "the call" because we got out early!  We had an army of support and it made such a difference.

 

On with life - we're headed to McDonalds for some comfort food and then we're going to watch movies the rest of the day!  Gotta grab the small pleasures.  Daddy's back to work tomorrow.  And guess who turns 40 FRIDAY!  My handsome husband!!!  Yes, he's officially joining us 40-somethings!  And gone will be the taunting now and calling me his "old lady."  Haha.  Now he's old too!  :-0

Jan 17, 2008

The words below were perfectly timed - as we let go of the idea of surgery and instead - come to grips with more waiting.  Waiting and hoping for God to heal.  Waiting for the next path to take with Cody.  Waiting for life to get easier.  My friend sent me the entry below - hope you find it inspirational as well.  It's from a study she's doing on Ruth.

"Wait" (yasab/yashab) means to sit down, to dwell, to inhabit, to endure, to abide , to stay, to remain.
Naomi is telling Ruth
"Sit still. There’s nothing more for you to do."

It follows that if Ruth sits, she has to wait. Waiting and being still imply confidence that what is hoped for will be done and it is reflected in patience. Ruth would have accomplished nothing by following Boaz around Bethlehem, trying to help him keep his promises.  Human nature frequently seeks to "help God out"; but generally when we so so, it doesn't help and can even make matters worse.
Patience is hard for people who drive to the One-Hour Photo Shop, take their clothes to the One-Hour Cleaners, and get breakfast at a drive-through window.

Hymn writer Phillips Brooks admitted,

"The hardest task in my life is to sit down and wait for God to catch up with me....The trouble is that I am in a hurry, but God isn't."

Haven't we often felt the same? Yet patience is part of God's strategy for maturing us. It's a lost skill we all need to cultivate.  If you have no joy because you're always in a rush, slow down.

 

As Torrey wrote

"Not so in haste, my heart! Have faith in God, and wait; Although He seems to linger long, He never comes too late."

God is never in a hurry, but He is always on time. God stretches our patience to enlarge our soul. Recall frequently to your mind that God's timing is always right—and then rest and wait patiently for Him for our unknown future is secure in the hands of our all-knowing God.

 
George Matheson wrote,

“We commonly associate patience with lying down. We think of it as the angel that guards the couch of the invalid. Yet there is a patience that I believe to be harder—the patience that can run. To lie down in the time of grief, to be quiet under the stroke of adverse fortune, implies a great strength; but I know of something that implies a strength greater still: it is the power to work under stress; to have a great weight at your heart and still run; to have a deep anguish in your spirit and still perform the daily tasks. It is a Christ-like thing! The hardest thing is that most of us are called to exercise our patience, not in the sickbed but in the street.”

To wait is hard; to do it with good courage is harder

Jan 20, 2008

Hey all!  Well Don had a fab 40th birthday!  I sent a balloon boquet from the boys to Don at work...every balloon said "40" on it.  I wanted everyone to fully razz him on the job.  :)   He heard from many friends and his family - and the best part was his friend from college and beyond, now lives in Buckley.  He and his wife called spontaneously mid afternoon saying that in honor of Don's birthday, they'd like to drive up here and watch the boys so we could go out!  of course we JUMPED on that offer!  So at 7pm, off we went!  I basked in their goodbye sentence:  "now stay out as late as you want.  seriously!  we honestly don't care how late you get home."  Now this was said by a couple who lived 45 minutes away!  So we took them at their word and came home at 11:30pm!  We had such a nice time - we went to downtown Bellevue (when did THAT get so cosmopolitan and built up?!?)  We had a great dinner at Z-tehas and then walked across the street to the movie theatre and saw "bucket list."  I have to say, I'm not so fond of sad movies these day. I get enough sad stuff at home.  But this was the only thing playing at 9:10 so we went for it.  And altho it did make me cry, it was really a wonderful movie in so many ways.  It reminded me of my dad.  It reminded Don of his dad.  Then it came full circle and made us think about being parents and our own children.  Basically, it made you want to seize the day and live life fully - in the moment - because as we all know, some day we WILL kick the "bucket."  Lots of food for thought.  I'd probably have preferred a comedy or love story, but hey, ya gotta take what you can get!

And the boys did great without us.  Thanks Ben & Christine - we owe ya!!!

The weekend has been a blur of no sleep.  We've spent 2 days swapping kids while the other tries to take a nap.  Cody's been going to bed at 11pm and getting up at 4am.  Sometimes he just can't get to sleep at night.  One thing we found out during this week's hospital stay is that he's seizing all night.  They are "sub clinical" seizures meaning they don't show up physically but they occur in the brain.  That explains, perhaps, his sleeing issues.  And hence, ours.  Poor little guy can't even get a break from seizures when he sleeps - they just never leave him alone.  He's been having 30'ish a day (small ones) but today he also had 2 huge ones. I think the lack of sleep just caught up with him.  Right before he had them his eyes were red and bloodshot and he was so tired.  We literally try ALL day every day to get him to nap but he won't.  And every single night he starts rolling at 3am and we have to bridge him back to sleep countless times just to keep him in bed awhile longer.  It is exhausting.  I called one agency this past week and said we are literally falling apart at the seems from lack of sleep and asked for some emergency respite.  We'll see how that goes.  Sleep is just our main issue - we pass each other in the hallway at 4am and just roll our eyes.  This morning at 4, I was up from Casey teething and Don was up with Cody.  It just never seems to end.

Casey has his 6 month well baby check-up tomorrow!  How time flies.  He is getting so big and is so darn cute.  I am battling this red patch of eczema on his cheek and it is driving me nuts.  It's been there about 2 months and it just won't go away.  We've been to the dermatologist twice now and are treating it with all the weapons we have.  But at night he scratches at it and makes it raw all over again.  I've tried mitts over his hands, sleeping right next to him and reaching over all night and batting his hands away from his face.  But you just can't control a baby's hands all day long.  I fear it will scar as we just can't get it healed.  Please pray for this if you have a second...it is really stealing my mojo and stressing me out.  It's just one tiny patch - he doesn't even have eczema otherwise so it's not an allergy or anything.  I change his sheets and such daily to make sure everything that comes against it is clean.  I've used aquafor, hydrocortizone, diaper creams, you name it.

Luckily it hasn't affected his disposition - he is as smiley and affectionate and happy as ever.  He is a rolling machine - you can't even change his diaper without him doing about ten 360's before you're done!  He's sitting up constantly.  Trying to crawl.  He's super interested in songs and hand motions to them - his current favorite is itsy bitsy spider and he erupts into giggle when the rain comes down.  He is in that tenuous window where infantile spasms hits (5-7 months) and every day that goes by is a gift to me.  In my heart, I don't believe we will seizures with this little guy altho I am fearful nonetheless.  But he truly seems to have escaped his brother's fate.  Praise the Lord.  And oddly, Cody really leaves him alone.  They are often in the same room together with Casey in the exersaucer and Cody wandering around and Cody definitely sees him and looks at him - but has never tried to hit or poke or even steal a toy from him!  He's very mellow around Casey which is another huge blessing to us.  Casey, on the other hand, is VERY interested in big brother and reaches out for him whenever Cody walks by.  I now feed them side by side in dueling high chairs.  It is quite the circus!  I should charge admission actually.  One of these days I'll video it and post it - it's worth a chuckle.

Well that's it for now - much love to you all.  I'm so glad to be done with the hospital odyssey that I'm in a great mood despite our current trials.  God is good.  We have much to be grateful for.

love, Shawna

Jan 22, 2008

Hello - if you happend to pray for Casey's little cheek, thank you!  It got better that same day I requested prayer!  It's not just a little pink patch instead of a huge flaming bloody red patch!  I have to stay on top of it, I can see.  I stayed up the last two nights, literally all night, batting Casey's hand away from his cheek every time he raised it.  I think that may be what pushed him back into the "healing" zone.  For two nights at least he didn't scratch it to death and make it worse.  It had 2 nights to heal.  I got no sleep - but it's a nice reward.

Cody is back to having big seizures - last night we had to give him a valium to stop them.  So often it's 1 step forward, 2 steps back with us.  I had him checked at the Dr. and there are no problems - just Cody being Cody.  Life is such a mystery to me.  My moods so directly corelate to Cody's seizure activity.  If anyone asks me how I'm doing, I instantly revert to saying "Cody's seizures are ____________ so I'm doing (good or bad)."  They so impact our lives.  And his of course!  Seeing him turn blue again - what a nightmare.  I hadn't seen it in awhile.

But still we must find a way to live this weird existence.  It seems so odd to watch Cody double over into a seizure, turn blue, and pass out -- and then do something ordinary while he sleeps it off and recovers like eat dinner or watch a movie.  It seems wrong.  And yet his seizure happen so often that's what we do - we just do the next thing.  Take a shower.  Check on him.  Hold him.  Do the dishes. Such a weird juxtaposition of intensity vs normalcy.  His seizures are a part of our lives.  He had 20 today - some big some small.  So many I sometimes lose count - or try to.

In the midst of it all, I'm still trying to practice the sacrifice of praise.  On these days it is particularly hard.  But I got a nice suprise that made it easy yesterday.  I was going over our taxes from the past - looking for a receipt.  I had to go thru files and file of paperwork and I came accross something I'd forotten about.  It was a "Pony Gait Trainer" - translation:  Cody's walker.  We bought it back when he was about 16 months old when we were told he'd never walk.  It cost a fortune and I cried for days when we received it.  I'll never forget watching him clanking around in it.  Seeing the receipt for that walker made me remember what a victory it was when CODY WALKED!  He walked at 18 months too, not even that far behind!  Granted, he's still kinda wobbly at times, but I had to stop right then and there and give praise for that fact.  Cody walks.  They said it would never happen and it did.  We have seen miracles in this crazy trial.  Who's to say we won't see MORE OF THEM!  So I carry a hopeful heart today because of that walker receipt.  In fact, here's my blog from the day it arrived - February 2006.

"Cody's walker finally arrived!  Insurance covered it (thank you God!)  It's SO adorably cute to see him in it.  I'm going to post a photo of it this weekend.  It's basically a vice that squeezes him on his tummy and back and the vice is attached to 4 wheels that come down.  It's purpose is to support his trunk while he walks.  Right now his huge discoordination prevents him from standing and walking becuase he tips over instantly.  This helps him gain some strength in his legs & trunk while learning a bit of balance too.

It's funny, I saw some tots in these walker contraptions early on in Cody's diagnosis and I remember telling Don "I will DIE if Cody ever winds up in one of those!"  The kids just looked so vulnerable in the walkers and leg braces...I couldn't bear to watch them with all this hardware on their bodies when they should be walking and running free like most "normal" kids.  God's been kind to toughen me up over the months.  I don't feel a SHADOW of those feelings when I put Cody in his walker or while ordering his leg braces.  To me, they aren't "hardware that keeps him shackeled instead of running free" anymore.  Now they are the very things that may GIVE Cody some freedom someday.  I look at this walker as a CHANCE!  We have no idea whether Cody will ever walk without some kind of assistance...so this walker is pivotal in helping him become as independant as possible.  And the leg braces are another thing that will strengthen his little ankles and calves and give us the very best possible shot at allowing him to walk freely one day.  This change in heart...my ability to look at these contraptions as blessings instead of curses...is just one of many supernatural transactions God has allowed me.  "He gives me beauty for ashes...strength for fear...gladness for mourning...peace for despair."  Those are the words to one of my favorite songs - as well as a quote from the Bible.

In exchange for my fear where these contraptions are concerned, God has given me strength.  And instead of watching Cody in his walker and thinking of how much our lives are in ashes...I see the beauty of the moment as my little fighter cruises up and down the corridor at the hospital.  He draws a crowd because he's so darn cute with his metal legs and velcro straps - going left, right, left, right with his tiny feet.

And suddenly I realize that the corridor on the 2nd floor of Legacy Emanuel isn't just a pediatric rehab department...it's Holy ground.  And I'm sure there are unseen angels guarding this hallway - attending to Cody's every step.  And my little boy, I know for sure, has sprouted invisible wings that allow him to soar above his circumstances and bravely take step after step toward his future."

Jan 27, 2008

Hi all, it's 8:30 and I have to go to bed because Casey's been up all night lately.  His horrid eczema is back on his cheek - bloody, raw, and itchy.  It may leave a scar they say...which breaks my heart.  He scratches it all night on the sheets. I've tried swaddling, pinning his arm to his side, tucking an arm inside his jammies, he still scratches his cheek on the sheets.  So I'm staying up and positioning his head straight up between pillows which he knocks over every half hour or so.  So frustrating.  We are going to the dermatologist for the 4th time this week. He says it's the most stubborn case of eczema he's ever seen.  And he's old!  It's just got me in knots.  We've tried natural balms, aquafor, hydrocortizone, you name it.  Please pray for his little cheek to heal if you would....it is really a challenge.

Of course it's nothing compared to Cody's seizures which are back in full force.  He had 3 huge ones yesterday and one today on the way to church.  Turning blue, screaming, foaming at the mouth.  Just hideous.  Last night he was up from 2:00am - 4:30 am and then got up for the day at 6am.  He took no nap today and tonight he fell asleep at 8:30p....but now at 9:30p he's up again.  He just can't sleep.  Consequently, neither can we.

I'll be honest (what else are blogs for?) Things feel very dark right now.

So I'm going to go to bed and have a good talk with the Lord about it all.

Love to you all,

Shawna

Jan 29, 2008

Hello friends, we've had a few things take a turn for the better (whew!)  Casey's cheek, miraculously, has started to heal.  I am JUMPING FOR JOY over this.  It has been so stressful having his little cheek be a big bloody scabby mess.  Especially when told it may scar.  After battling this eczema for 3 months and having it come and go - it looks like it may be healing all the way finally.  I have stayed up all night all weekend keeping him from scratching it on sheets or with his hand and I think this is what has helped it heal - finally no irritaion from little fingernails or fabric!  I'm a zombie, but it was worth it.

Cody's still having big seizures and is still up all hours of the night, but I'm praying that I've found a light at the end of the tunnel.  I called the dept. of developmental disabilites (DDD) and they have an emergency respite allotment.  After describing our situation, they said it "may" qualify as an emergency.  I had to submit some info and get a Dr's support so our super amazing neurologist helped plead our case with the following:

"I am the pediatric epileptologist caring for Mr. Cody Graves.  Cody has catastrophic epilepsy, meaning his seizures are intractable to seizure medications and his development has been severely blunted by his seizure disorder.  He currently has 30-50 seizures per day.  The etiology of his sleep disorders is not understood but likely stems from his frequent seizure episodes.  Often he will be up most of the night with episodic seizures.  The toll on the parents sleep has been extremely devastating.  They only get about 2-4 hours of sleep per night.  This sleep deprivation has impacted their executive function, concentration, ability to stay awake while driving and cognitive processing.  This added stress has also impacted their health.  Shawna (the mother) has heart palpitations due to this stress.  Although we are currently investigating sleep medications, they have so far been unhelpful.  I am writing to place my concerns for their ultimate need for sleep.  Could you please grant them emergency respite for the next two months?  During this time we will be trialing sleep medications but in the short term they really need sleep.  A respite worker would help them regroup and hopefully allow our trial medication to begin to have an effect on Cody's sleep.

Sincerely,

Russell Saneto

Associate Professor Neurology and Pediatrics

Children's Hospital"

So.........with our beloved neurologists help, I'm praying we are granted temporary overnight respite so we can re-gain control of our lives.  Please cross your fingers, pray, do a dance, juggle scissors...whatever you feel fit to give us a cosmic nudge toward this goal!  :)

It is like squeezing blood out of a turnip to get any type of respite from anyeone so I'm skeptical - but hopeful.  They sure make you feel small too.  Here you are, calling to humbly tell them your life is falling apart, and they question you as if you'd just robbed a bank.  "how many hours a day do you need help?"  "ummmmm....well I don't want to be greedy...."  "maam, you have to tell me what you need" "ummmmmmmmm.....I'll say 8 hours?"  "EIGHT HOURS?"  "ummmmm..you told me to tell you what i needed."  "EIGHT HOURS????"  "ummmmmmm....is that too much?"  "JUST TELL ME WHAT YOU NEED!"  "I JUST DID!  AND YOU'RE ACTING LIKE I'M CRAZY!"

I also called DSHS to ask about a medical coupon (which you don't qualify for unless you're low income - but there's a "spend down" plan where once you hit a certain amount of outgoing medical bills, they assist you.)  They, too, act like I'm an idiot.  I had no idea about this program so I called and said "can I get some info on the spend down program?"

Rep: "I'll send you an application in the mail.  thank you.  goodbye."

Me: "wait...I have a few questions."

Rep: "maam...I have 20 people holding on the line."

Me: "well, I just waited 20 minutes to talk to you."

Rep: "what is your question maam?"

Me: "we spend about $20,000 a year on medical bills alone.  will we qualify for the medical coupon?"

Rep: "maam, I just TOLD YOU, I'll send you the application."

Me: "but I don't really understand what I'm applying for - could you explain how 'spend down' works?"

Rep: "like I said, maam, I have 20 people on the line."  CLICK.

GRRRRRRRRR.  Like life isn't stressful enough, these government agencies treat you like dirt.  And anyone who calls them is truly just looking for help.  Only to be minimized and shot down.

But for those parents of special needs kids, those are two options I didn't know about until this past week - emergency respite and "spend down."  Worth checking out.

Thanks for your kids emails, thoughts and prayers.  We are having a rougher time than usual and your support is felt.

Gratefully,

shawna