We saw Cody's new neurologist today - Dr. Russell Senato.  Looong meeting with him.  He was very thorough...studied all the info...asked tons of questions.  His specialty is mitochondrial issues (don't even ask me what that means!)  But long story short, he said to keep Cody on the drug we're on and increase it hoping for seizure freedom.  And in terms of the "cause" of the seizures...he had a lot to say.  He said it's most likely some metabolic or mitochondrial issue that either we haven't tested for or hasn't been discovered yet.  His ultimate suggestion was flying to Detroit for a cutting edge PET scan called a "flunazeral" or something like that.  And he suggested "stopping off" in Cleaveland to test with a DNA chip and while he was under...to do a muscle biopsy.  Apparently neither of these procedures are available at Children's Hospital yet.  So I like it that he is on the cutting edge of things.

I said, "you realize I'm giving birth in 2 months?"  So not sure how that's all going to pan out.  He did a blood test for Angelman's syndrome so that's good.  Basically he said there are tons and tons of metabolic/mito issues this could be...and only 3 of them are issues you can do anything about.  The rest...are kind of incurable.  The DNA chip is a start to see if there are any genetic deletions.  The muscle biopsy tests for further issues.  The PET scan shows if he's a surgical candidate (which would only be the case if there's a focal point to his seizures that has erupted over time.)

So....blah blah blah.  Enough medical info.  I'm sure you're asleep by now.   I guess, in sum, we are looking down the barrel of more traveling and more testing to try to find a reason for this condition.  And in the meantime, more trileptol to try to stop the seizures.  Exhausting contemplating all this.  My brain is on fire from thinking and trying to comprehend so much of his information.  And the LAST thing on earth I want to do is take a trip with a nursing baby!  Lots to think and pray about.  But I do feel we are in good hands and that this is the final frontier of testing before we say "we're done." 

Cody's seizures have gotten better once again, thank you God!  Yesterday we didn't see even one!  Today none so far at 4:30p.  Strange how as his eye heals, his seizures die down again.  We have to do another overnight EEG in the hospital which is no fun.  But it may shed some light on where his seizures are at the moment. 

His swing is up in our living room which has added a lot of joy to his little life! 

I guess my prayer request is...resolution for the "cause" of Cody's seizures.   And hopefully without having to fly across the country yet again.  And, of course, for seizure control.  And sleep.  And that this baby I'm carrying would remain healthy and seizure-free for his whole life!  Thanks for reading - and for wading thru my medical report!

love, Shawna 

May 7

Hi there!  Another crazy weekend under our belts.  Cody got invited to his first birthday party so off we went in search of a good time.  The boy was Neil who goes to Cody's special needs school.  There were several others from Cody's school there.  It was quite...depressing...seeing Cody among these little ones who are also delayed.  There they were climbing up the slide, eating cake all by themselves with forks, asking for seconds.  And there was Cody, walking circles in the yard trying to eat rocks.  He was completely oblivious that there were kids inches away from him.  Sigh.  Then, wouldn't you know, he had a HUGE whopper of a seizure in the back yard.  That pretty much called it quits for us.  Luckily Don was there to help me.  But it was still nice to go to a birthday party...and for people to not be afraid to invite my little guy.  We then went to a church cinco de mayo event that was quite nice - our friend Lisa took Cody the whole time so we could relax and he did great roaming the grounds with her.  Next day was church and more horrible seizures.  I kept telling Don, "something's up....he's either catching a cold, or something because theese never come out of the blue."  And sure enough last night he was up all night with a stuffy & runny nose.  The only way I could get him to sleep was sitting in the rocker with him.  Needless to say it was one more night of no sleep for mom.  At least we know where the big seizures came from.  There's some sanity in being able to figure out the puzzle of who he is.  I fear another sleepless night on the way.  So far today, tho, only 1 small seizure.  With colds and the flu, he seems to have the big seizures a couple of days before we see any symptoms, then things calm down.  Weird. 

I saw my OB today and it's only 1.5 more months!  I am in such denial.  Our house is in such a mess.  It's literally all I can accomplish each day to do the laundry, dishes, groceries, cooking and superficial "picking up" - I am so exhausted.  I pray we can get this house looking and feeling somewhat organized before baby is born! 

But what a beautiful day out today!  Sun was shining - nice light breeze.  Coudn't have been prettier so we were grateful for that.  That's our news for the day - thanks for checking in!

love, Shawna

May 10

Cody started CUBS this week - it's the Center's autism therapy class that meets 3 times a week for 2 hours a time!  I drop him off and watch thru the window (which is hard for a control freak like me!)  I'd met with the directors the day before for an hour and briefed them on all of Cody's idiosyncracies...his seizures...etc.  And his one-on-one therapist at CUBS, Jill, was great!  It was very edifying watching someone else chase him for an hour!  I kept thinking, "that must be what I look like!  A chicken with my head cut off - dripping in sweat - out of breath - up, down, up, down."  She chased him across the room countless times.  She tried to get him interested in toys to no avail.  She put him on and off the swing a dozen times.  No WONDER I'm always tired!  :)  And I loved hearing the input after the class...."Shawna, we don't know HOW you do this every day!"  Ahhhhh...music to my ears!  Someone who finally understands a bit what it's like to chase Cody.  Course she only had to do it for 2 hours!  During the snack time he was nice and mellow luckily so she got a break.  But she was great and was truly trying to connect with him. 

He's just got this "pacing" habit now where he'll just go back and forth across the room - kind of checked out - with both hands resting on his tummy - and he screams if you try to stop him.  If you even put his favorite toy or snack in front of him, he'll walk right thru it.  His therapists say it isn't necessarily negative...he's alert...he's getting visual and physical stimulation from the pacing...he's having to negotiate around objects, mats on the floor, etc.  And his balance is at it's very best when he paces.  So we don't discourage it - but we're trying to find out "what he's getting from it" in order to replace those needs with some more productive behavior over time.  He's such a puzzle. 

We both have dreaded colds which have kept him up all night 2 days this week.  One of the nights he turned blue 5 times with seizures...so we had to administer the rectal rescue med to calm him down.  So crazy. 

I also just learned we have to do 2 days at Children's hospital for an overnight video EEG this Monday.  That's where they glue the electrodes on his head (29 of them) and monitor him non-stop.  He hasn't had one in a year and his new neuro says it's time to get some new information about his seizures.  I agree - but yuck - I hate these things!  He's basically confined to a bed for 2 days which just doesn't work well with mr. movement.  Please pray for a successful EEG - and for my ability to keep him calm the whole time.  And for him to sleep alot! 

That's it for now - have a great thursday!  It's almost the weekend - yippee! 

Shawna

May 12

Happy Mother's Day this weekend - to all of the moms who are heroes.  Here are two of my favorite writings on the amazing virtues of a special needs mom.  If you know a mom who has a child that isn't "typical" - please consider sharing this with her on mother's day - I guarantee it will make her day to know you acknowledge all she has on her plate.

love, Shawna

Thoughts of a Mom, By Maureen K. Higgins

Many of you I have never even met face to face,

but I've searched you out every day.

I've looked for you on the Internet, on playgrounds and in
grocery stores.
I've become an expert at identifying you. You are well worn.
You are stronger than you ever wanted to be. Your words ring experience.
Experience you culled with your very heart and soul.
You are compassionate beyond the expectations of this world.
You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority, a very elite sorority.
We are special. Just like any other sorority, we were chosen to be members.
Some of us were invited to join immediately.
Some not for months or even years.
Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units,

in obstetrician's offices, In emergency rooms, in hospital rooms and during ultrasounds.
We were initiated with somber telephone calls, consultations, evaluations, blood tests, X-rays, MRI films, and heart surgeries.

All of us have one thing in common.

One day things were fine.
We were pregnant, or we had just given birth, or we were nursing our
newborn.
We were playing with our toddler.
Yes, one minute everything was fine.
Then, whether it happened in an instant, as it often does,
Or over the course of a few weeks or months, our entire lives changed.  Something wasn't quite right.
Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs.
Some of our children undergo chemotherapy.
Some need respirators and ventilators.
Some are unable to talk, some are unable to walk.
Some eat through feeding tubes.
Some live in a different world.

We are knowledgeable.
We have educated ourselves with whatever materials we could find.
We know "the" specialists in the field.
We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done,
We know "the" degenerative and progressive diseases
And we hold our breath while our children are tested for them.
Without formal education, we could become board certified in neurology, endocrinology, psychiatry and we each could run our own pharmacy.

We have taken on our insurance companies and school boards to get
what our children need to survive, and to flourish.
We have prevailed upon the State to include augmentative
communication devices in special education classes
And mainstream schools for our children with cerebral palsy.
We have labored to prove to insurance companies the medical necessity of gait trainers
And other adaptive equipment for our children with spinal cord defects.
We have sued municipalities to have our children properly classified
So they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world,
Even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums"
And gritted our teeth while discipline was advocated by the person behind us in line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs,
Complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to Be in our sorority,
And don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To
Holland"
and Erma Bombeck's "The Special Mother."
We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays.
We have found ways to get our physically handicapped children to the
neighbors' front doors on Halloween,
And we have found ways to help our deaf children form the words, "trick or treat."
We have accepted that our children with sensory dysfunction
Will never wear velvet or lace on Christmas.
We have painted a canvas of lights and a blazing Yule log with our words for our blind children.
We have pureed turkey on Thanksgiving.
We have bought white chocolate bunnies for Easter.
And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day,
And gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy.
We've mourned the fact that our trip to Holland has required much more b aggage than we ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
Without most of the things we needed for the trip.

But we, sisters, we keep the faith always.
We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds.
We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons.
We dream of them planting vegetable seeds, riding horses and chopping down trees.
We hear their angelic voices singing Christmas carols.
We see their palettes smeared with watercolors,
And their fingers flying over ivory keys in a concert hall.
We are amazed at the grace of their pirouettes.
We never, ever stop believing in all they will accomplish
As they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands, as together,
We special mothers and our special children,
Reach for the stars.

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

A Special Mother:
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of a special needs child. Did you ever wonder how mothers of these children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to
profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a special
needs child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a special child to a mother who
does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a
sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence
that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't realize it yet, but she is to be envied.

She will never take for granted a 'spoken word'". She will not
consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it! When she describes a tree or a sunset to her blind
child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance,
cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in
mid-air.

God smiles, "A mirror will suffice."

May 16

Wow wow wow.  What a drama at the hospital.  We went in Monday for a 24 hour video EEG.  This is where they hook Cody up to 29 electrodes.  The purpose is to monitor his brain waves during a seizure.  We went in because he hasn't had one in a year and the neuro wanted to see if there was any change.  Plus, he's been having these long ones where he stops breathing and we wanted to see what was up with those. 

So...Monday morning bright and early they get out the glue, the air compressor, the tape, the gauze, etc.  It takes an hour to apply those horrid things and for an entire hour, Cody is absolutely beside himself.  And rightly so.  They scrape his skin in 29 places before they even apply the glue which is irritating.  He's held down and his face is held in place for an hour straight.  Then the glue which is cold, the tape which is wet, and the air gun which is LOUD and freezing.  He literally SCREAMS non-stop, writhes around, reaches for me, wails, and nearly explodes.  I try to soothe him but there is really not one thing that helps him at all he is so frenzied.  So I just stand there and hold his hand and cry.  It is seriously so grim.  Then he passes out from the crying and I walked him up to our room.  His head's wrapped in gauze over the electrodes and all 29 wires are put into a box so he's constantly attached to this box & the cord that plugs it into the computer.  So he can only move about 1 foot radius without me having to pick up the box & the cord and re-adjust.  And he basically has to stay on a bed for the whole time.  We can lift him into a high chair or exersaucer but that's it.  And there's a video camera trained on him the whole time that has to be moved anytime he moves.  A red button is pushed when a seizure happens. 

So that's the set up.  And we wait, and wait, and wait.  NO seizure for the whole 24 hours.  So the Dr's have us stay another 24 hours.  STILL no seizure.  Can you believe it?!?  He had 2 the day before where he turned blue - but none while he's hooked up.  He's had 5 since we've been home from the hospital today - but NONE while he was hooked up.  CRAZY.  So we'll probably have to go back in for a 4-7 day attempt where they hook him up to an IV and decrease his meds to try to get him to seize.  What a nightmare.  Don joined me both night at the hospital so I got a smidge of sleep but not much.  Cody was up at 5:30am this morning ready to party. 

Now my nanny and Don have gotten our cold so life just keeps getting crazier!  So there's my gigantic vent.  Complaints and all. 

The only bright lining was that we were in a hospital full of extremely sick kids - many of whom are dying - and we did get to leave the doors and get in our own car after 2.5 days.  They even have a school room there for kids who "live there."  It's not hard to get perspective on your problems when you are surrounded by sick kids and their devastated parents.  And when you hear "code blue" over the intercom more times than you want to. 

Wow wow wow.  What a few days.   Glad to be home.  Cody's entire head is a big glue ball.  Kind of cute.  Kind of sad.  He's so happy to be able to cruise around our living room without those wires attached to his head! 

That's our story for today - thanks for checking in! 

love, Shawna

May 19

Happy Saturday to you all!  I don't have a lot of new excitement - which is good I suppose!  Cody's hair is becoming slightly less glue-filled with each day.  Baby is kicking and kicking (and kicking!)  Seizures are 1-3 small ones a day.

 I guess what's foremost on my mind is that I have just over 1 month before baby #2 enters our lives!  Holy moly.  Last night I had dream after dream with the same theme...I was being held hostage.  Or I was being backed into a corner by someone with a gun.  Or chased by someone with a gun into a dead end.  All scenarios where I'm trapped and can't see a way out.  Gee, I wonder if my real life anxiety is slipping into my dream life!  It's true, the arrival of this baby is stressing me out.  I'm so excited to meet him and we are so thrilled to be having him - don't get me wrong.  But I so expected Cody to be further along than he is by this point.  When we were planning to get pregnant I remember thinking, "in a year's time Cody will be walking well...probably much easier to manage..."  Yet one year later, he's pretty much exactly the same if not more difficult to manage.  I just can't imagine life with a baby and Cody.  How will that look?  Yikes.  I do have nanny help - but it is me who will be running this ship.  Recovering from surgery for a month.  Trying to spread my attention and time between Cody - who is super needy and super high maintenance - and the new baby.  Our house is still pretty much turned upside down from the move.  Nothing's organized.  I so wanted everything to be in it's place when baby arrived.  Yet I suppose my lesson is...that there will probably never be a time when "everything is in it's place" when you have a disabled child.  There is no finish line.  No time when you say "whew...glad THAT trial is over!"  I wonder if this last month, as well as my dreams of being trapped, are all telling me that life is okay messy.  That an undone house is all right.  That all I can do is my best.  I long for organization - perfection - order.  I long for plastic bins in my garage, each with a label listing the contents.  I long for a file cabinet where all of our bills, medical records, etc. are cleanly and neatly filed in separate marked spaces.  I long for clean windows, freshly vacumed floors, dishes that don't pile up in the sink but are put away after each use.  I long for freshly cleaned sheets instead of ones with spots of drool all over them from Cody's sleepless nights.  I long for all of our CD's to be in one place instead of scattered all over the house, car, garage, table tops.  I suppose these are things we'd all want in a perfect world.  And as I re-read that list - each one is terribly unimportant.  Because in the grand scheme of things - I long much more for a child who knows he's loved.  For a child who knows that his mom will drop everything any minute of the day he needs her.  For a child who is played with, taught, read to, clapped for.  Bins with labels won't follow me into heaven.  A clean kitchen sink won't miss me when I'm gone.  God won't say "well done" because all of my CD's were in 1 spot.  But being the very best mom I can be....that is eternal work.  That will go to heaven with me.  That will be in the record books when I face my Maker.  Let my house fall apart under my feet.  Let my laundry pile up.  But let me always remember that I have one shot at being Cody's mom.  I have one chance at these toddler years when he's so eager to race to me and embrace me.  I have very little time left when he'll want to be rocked to sleep.  If this is being "trapped" then I guess I never want to be free.

love,  Shawna

May 20

We just got back from the pediatric urgent care - double ear infection.  One eardrum was bulging, red, infected & swollen she said.  This explains why we've been up all night for 3 nights and why he's had 3 seizures today where he stopped breathing - one was 3 minutes long!  The longest 3 minutes of my life! 

Poor Cody - when he gets a cold it just becomes a nightmare on every level.  The anti biotics don't really stop the pain for 24-48 hours so please pray for the seizures not to increase!  I really don't want to wind up in the E.R. tonight. 

He's up from his nap so I must run - thanks for the prayers!

Shawna 

May 23

FINALLY some relief from his illnesses!  The ear infection is under control thanks to anti biotics finally working.  What a crazy time this has been.  I didn't think it was actually possible to go 3 straight nights with absolutely no sleep but hey, it is!  Who knew?  Just a forshadow of what we'll go thru with new baby I'm sure.  So after 3 days of screaming, Cody is finally settled and content.  I want to keep him in a plastic bubble the rest of his childhood to avoid colds and sicknesses because of what they do to him!  We saw so many horrid seizures I can't even count them.  but yesterday he was back to just a few tiny ones.  I pray he doesn't get a bug anytime soon!  Course Don and I both got it too.  So yay and thanks for your prayers - the worst has passed. 

He is doing so well in his new classes.  He got a secondary diagnosis of autism and was enrolled in "CUBS" which is a program at his school.  He goes 3 days a week for 2 hours at a time and works one on one with a therapist on communication skills mostly.  I get to watch thru the window.  He is just so darn cute.  They have a snack time, play time, gross motor room time, fine motor time.  He really seems to respond to structured activities like this class.  And it gives me a nice break to be able to just sit and watch - or go grab a bite to eat or whatever. 

He's actually starting to draw with crayons without trying to eat them.  Well, he draws if you grab his hand and put a crayon in it...then scribble hand over hand.  He'd never put a crayon to paper without the hand over hand part.  But at least he's not trying to eat them!  Our new routine at home is that every day we go for a long walk outside and I just follow his lead.  He walks up to bushes and ruffles them...he grabs at grass...he squats down over the manhole covers and tries to eat the rocks.  He does lots of walking in circles out on the street.  Touches cars & mailboxes.  He's such a quirky little guy.  We must look pretty funny to the neighbors - him pacing and occasionally stopping to grab a rock and try to eat it - and me following inches behind him making sure he doesn't fall.  At the urging of his physical therapist, we did order him a dreaded helmet.  I can barely write that word, I hate the idea of it so much.  But he's had enough falls to warrant one.  And it does get old staying inches away from him at all times to avoid a fall.  We'll start by wearing it in the house and see if maybe he can gain more independance with it.  Then maybe try it at the playground.  The purpose of it is to keep him safe first, but almost as important to foster independance without mom hovering or holding his hand every step.  So.........................we'll see.  I just HATE the idea of stares.  I hate him looking "different."  But I guess I have to ask myself why I have such strong feelings about it.  It's just so hard to see your child looking so vulnerable.  Braces that come up to his knees plus a helmet.  I tear up just writing that last sentence.  I want my little boy to be free of these contraptions.  I want him to know how it feels to just walk, run...and not be shackled by this stuff.  Oddly, none of it bothers him.  He's oblivious to the braces - they're all he's ever known.  And the helmet really doesn't phase him.  So I guess it's all my problem really.  I guess this all just challenges what us moms dream for our children.  This is not my dream!  This is my nightmare.  It's one thing to be in braces and a helmet at 2.5 years old.  But what if this continues till he's in his teens?  Will he be ridiculed? Will he even notice if he is?  Would he notice stares?  Would he care?  Borrowing trouble from the future I guess.  Fearing the future always brings me back to the scripture "give us this day our daily bread."  I only need to focus on what God is allowing today - not on what He may allow tomorrow.  And today He is allowing these braces and a helmet.  This is my daily bread.  Today's provision.  God has provided braces to secure his steps...and a helmet to protect his little head.  Praise Him for them.  Lord, I pray you help me look at these objects with gratefullness instead of depression.  Help me see them as tools to make Cody more able instead of impediments to his freedom.  Help me re-adjust my view about how I see my child - how I obviously care too much about how he looks - to me and to others.  Help me battle the pity and/or horror I see in other mom's faces at a "poor little boy" who has to wear these things.  I pray that when I'm asked about them (as I often am) that I can give a look of great confidence and pride - and joyfully say, "God's really provided some special braces for Cody to get around" or "can you imagine a more amazing child who will wear a big heavy helmet with a huge smile on his face?" 

So many lessons to learn about pride...about being self-focused instead of God-focused.  And mostly...about how blessed I am to have a child who is a walking sermon on bravery and simple joy despite his circumstances. 

love,  Shawna

May 27

You know, sometimes I don't post for a few days just because I don't want to be negative....and constantly write about our trials and tribulations.  I keep waiting for things to "lighten up" so I can write some good news for a change.  Sadly, things have only gotten worse for us over this holiday weekend.

We went into Memorial Day weekend with our usual gut-ache.  It was exactly 2 years ago on Mem. Day weekend that Cody first went into the hospital for seizures and was diagnosed.  Before that time - his 6 months of life had been completely normal.  So this weekend always makes us a bit queasy.  And sure enough, this weekend found us in the hospital again.  Thankfully it was only a 1 day stay rather than a week long one, however.  We did manage to be grateful for that.

Cody had a cold that started about 2.5 weeks ago.  Then 1 week ago it turned into pink eye + a severe double ear infection.  So 3 out of the last 4 weeks we've been at the hospital on the weekend for one reason or another.  When he gets even a small cold, it requires immediate care because his seizures go completely whacko.  I thought going into this weekend he was on the mend but Fri. & Sat. he had some horrible whopper seizures and cried quite a lot throughout the day.  I could tell something was wrong and planned on taking him in to the Dr. today.  We hadn't slept much in the last couple of days because he is up all night when he has these bigger seizures...and last night he added vomiting every 15 minutes to his bag of tricks.  Starting at 3am we went through dozens of towels and rags cleaning up after him, poor little thing.  So one more sleepless night to add to our list.  We were at the E.R. by 6 a.m. because his seizures were going crazy and sure enough, his ear infection has either returned....or never left.  He was vomiting from the pain, apparently.  After 3 hours in the E.R. (ugh) they sent us home with an antibiotic shot and a course of a new antibiotic for the next 10 days. 

THANKFULLY he stopped vomiting once he got the shot and settled down a little - altho we still saw 2 big seizures throughout the day.  Luckily we had a prescription for Zofran too - which stops vomiting - but we didn't need it because he stopped on his own.  He just can't do tons of throwing up because he takes anti-seizure meds 3 times a day and has to have them (not that they're doing any good at present!) 

We missed yet another Sunday at church but had previously arranged for our Pastors & Elders to lay hands on him because he's been having such a tough time lately so we got in the car and met them there after church and that was a lovely time.  They annointed him with oil and prayed over him - for healing - for overall health - for development - and for endurance for Don and I.  You should have seen Don and I straggle into church - not showered or even had our teeth brushed yet.  We'd been up all night and hadn't even looked in the mirror - yet nothing was going to keep us from getting that prayer for him!   Not exactly our "Sunday best" but of course everyone understood. 

The rest of the day Cody just rested and played at home - no more vomiting - just a little ear tugging and trouble sleeping.  Thank heavens Don has tomorrow off because we need it!  This (of course) was our weekend to "get stuff done" at the house and nary a thing has been accomplished.  Course that has been the case the last entire month.  Cody is a crisis a minute.    But still in the face of all he goes through, he is such a trooper.  He was drug into the E.R. at  6am with lights blaring - getting shots - getting examined - and he did it all without so much as a scream.  I, on the other hand, was quite the grump and managed to throw out my obligatory statements like "WHY does this always happen on a Sunday when we're missing church yet again?"  "WHY can't we have ONE weekend without a crisis?"  "HOW are we going to ever get moved in with every single second devoted to putting out a Cody fire?"  "HOW much crap will Cody have to endure?"  "OF COURSE his ears are re-infected....WHY WOULDN'T they be???  Everything that CAN go wrong with him DOES!" 

And of course my positive husband didn't join my mutterings but just held Cody and refrained from complaining.  I think I do enough for both of us.  A few nights of no sleep and I am literally the biggest complainer on the planet - I can't keep it in no matter how hard I try - it just tumbles from my mouth! 

It is a shock we're not divorced - and I don't say that because we're in any trouble in that way.  This is all just SO much to go through as a couple.  Seems like I read that the divorce rate for parents of special needs children is 80% or something like that.  I can see why!  You literally don't have a life outside of your child's needs.  It is a tribute to Don that we manage - he is the steady Eddie.  I am the emotional, drowning, complaining, freak.  Sometimes we literally just sit and look at each other and burst out laughing from the absurdity of it all.  In the E.R...at 6am...we started cracking jokes and I thought I was going to go into labor from laughing so hard.  Sometimes it's all you can do.  We tease the nurses - we sneak in McDonalds - we make fun of each other's bad hair and mis-matched pajama bottoms.  I guess for us, the moral of the story is that pain is more bonding than pleasure.  Going thru this together has forged in us a resiliancy we never would have known otherwise.  We lean on each other and cover for each other every day.  We look at each other with tears in our eyes during each seizure.  We throw Cody in the car and race to church in our pajamas to catch the prayer team before they leave - to get Cody prayed for.  We are like minded...and committed to our son...and whatever it takes to serve and love him.  But without Christ at the center, we would be adrift at sea as a couple, that's for sure.  The Lord gives us extra measures of grace for each other.  He helps us cope.  He gives us hope.  He is our common ground and it's from Him we draw our strength.  I can't imagine doing this without the Lord.  It's barely manageable WITH Him!  Haha.  So there ya go - one more post full of complaints and negatives - not a lot of "good news."  Hopefully that will change soon - but for now "just tryin' to keep it real, dawg" - as Randy Jackson would say on American Idol. 

with love, Shawna

May 30

Finally some GOOD news.  Things are much better around here, that's for sure.  No seizures in 3 days.  I take it his ear infection has subsided.  AMAZING what a cold can do to him.  Just a cold triggers 3-5 'stop breathing' seizures a day.  Makes me want to turn him into "Bubble Boy".  haha. 

It's been a blessed break to have 3 seizure free days.  My new nanny also started yesterday so it's been nice to be able to run errands and finally hang some pictures in our home! 

A new home is interesting - you never really know what's "outside" till this time of year.  Every day I get a new surprise - a new flower I had no idea was planted - a blossoming magnolia tree or lilac bush.  It's really a sweet thing to wander outside and smell all the yummy flowers and see all the gorgeous colors that have been hiding.  Course our grass is over a foot tall (literally) because we haven't lifted one finger toward the outside of our home since we moved in.  Weeds are miles high.  Ask me if I care! 

However, the Lord did show me a great thing through my "garden" of surprises today.  Every day I drive into the driveway, passing the same row of trees - not noticing them much.  But the last few days some color started to show up brand new.  And today - lo and behold - 3 rose bushes I had never even noticed were bursting amidst the trees with blooming bright pink roses.  There must be 15 roses in full bloom - smelling fantastic and perfectly formed.  I've walked out to smell them and stare at them a few times since discovering them.  What fascinated me - is that I've done NOTHING to tend to them.  And the house was without inhabitants for 5 months before we bought it.  I've always heard roses require a lot of upkeep and are very tempremental.  Hence the fact that I would NEVER attempt to grow a rose bush.  However, my big lesson for the day - was seeing these pink flowers busting with beauty...without one split second of attention paid to them in the last 8 months.  It was as if the Lord were saying, "see what I can do without ANY of your help?  You didn't do one thing to make these roses so beautiful - you didn't even know they were there - and I've taken care of them and tended to them and am offering them to you now fully bloomed and beautiful." 

It was after a long morning where I'd watched Cody in his autism therapy class - he was completely zoned out and in his own world.  For 2 hours I watched them try to work with him and I kept thinking "there must be SOMETHING I can do - SOMETHING has to be done!  What other programs can I enroll him in?  What other developmental work can I do with him at home?  I obviously haven't been doing enough!"  I left so discouraged that he's still so so so behind - and I felt so driven and stressed to do SOMETHING about it.  Then I pulled into my driveway and saw these roses and was very aware, very clear, that God can turn Cody around without so much as one finger lifted by me.  God can cause Cody to bloom just as He did the roses...because of, or in spite of, my interference.  Out of nowhere, beautiful roses.  Perhaps someday - out of nowhere - Cody will blossom into a little boy who can tell me he loves me.  A little boy who can ride a bike.  A little boy who can count.  Perhaps.  It gave me hope.  Probably corny...but it did encourage me.  All my lamentations about not doing "enough" or finding enough help for him...are wasted time in the face of the fact that Cody's own Creator can do more for him than I could ever plan or strive to make happen.  What a relief.  What a load off my shoulders.  I needed that today!

Our other good news while I'm on a good news roll?  WE'RE GETTING AIR CONDITIONING INSTALLED MONDAY!  YAHOO!  After this 87 degree day, this 8 months pregnant complainer says HALLELUJAH!  :)

love, Shawna