Cody's 2nd halloween! 

Cody the Cowboy made a short appearance in our neighbohood with his 6-shooter.  The photo on the left was taken about 10 minutes before it was "trick or treat" time!  He conked out at 6pm with gun in hand.  I drew the mustache on him in his sleep and he didn't even flinch!  Go figure.  The photo on the right is after we woke him up.  We made it to about 4 houses where everyone got a big kick out of the 'Outlaw.'  He can't have candy cuz of the keto diet so we just visited and got hugs from everyone.  Obviously he doesn't "get" Halloween - no cognition of it.  But I dressed him up and made the rounds to try to keep some sense of "normalcy" in our lives - and to get the photo for his scrapbook.  Someday (my fantasy) is that he'll look at his photo albums and say, "hey mom...thanks for getting in the spirit and giving me normal little boy experiences even tho I didn't get it at the time.  I get it now!" 

We had a tough day overall yesterday - 10 seizures and many were very intense.  Hoping for better day today.  He woke up at 4am too - which wasn't so pretty for mama!  He's in this habit of going to bed at midnight and waking up at 4-6am.  Nothing I do breaks him out of it.  I deprive him of naps during the day, and he STILL stays up till midnight.  The neuro said it's just typical behavior for a neurologically challenged kid.  Their brains just don't turn on and shut off like ours to allow them to sleep.  It's really sad cuz at 3am, he started tossing and turning and trying so hard to get back to sleep.  He really wants to sleep, his brain just won't let him.  For an hour he rustled about, changing positions, looking at me and whining a bit.  Finally we both got up.  Please pray for sleep sanity for this house!  We need it!

That's our Halloween report - my little cowboy was just cute as could be!  He's growing up so fast.  We just love him to pieces.

with love, Shawna

Nov. 5

It's continued to be a rough time seizure-wise.  And his glucose levels have been way too high on the keto diet.  So I finally tweaked his ratio and got his levels down and his seizure were better today - only 4 so far.  I can't believe that I write "only" 4 seizures.  Kinda crazy.

Today we went to church and there was a huge batism - with a big swimming pool right in the middle of the sanctuary.  The Pastors climbed in and anyone who wanted to be baptized just lined up.  It was neat to see.  One particular person struck me - a little boy around 10 years old who climbed in, fully dressed, with his dad.  His dad was beaming - and teary eyed.  His son wanted to get in line to get baptized - even in his sunday best!  So the dad stood on one side and the Pastor on the other - the little boy said that he believed Jesus died for him and wanted to receive Him as his Lord and Savior.  Then he plugged his nose (so cute!) and his dad and the Pastor dipped him backwards into the water!  He came back up sopping wet with a huge grin on his face - and his dad looked so....joyful. 

I sat there with tears streaming down my face.   I thought, "will I ever get to climb in that tank with Cody?  Will he ever be able to articulate that he wants to be baptized?  I know that even if he can't communicate with me, he can still have a relationship with the Lord.  I don't doubt that.  But I so envied that dad who got to experience the thrill of hearing his son pray out loud - and got to watch him go under water and rise up a new person.  Oh the things I'm afraid I'll miss.   But you know what, as each day goes by, I find a tiny bit more strength for this task ahead of me.  The longer I know Cody as he is....the more I am able to accept whatever he will become.  I guess that's the final stage of the grieving process, "acceptance."  Some days it's easier than others.  But I AM getting there.  I am learning more and more that it is totally out of my control and no matter how hard I strive to fix Cody or get him fixed....the more elusive any sort of control seems. 

I've had a few emails with a new friend who has a child with this condition.  She and I both feel the same way - we've sort of boycotted God off and on but never wanted to admit it to anyone.  She asked me how I make sense of it all - watching our children suffer with no end in sight.  The best answer I can come up with these days I heard from Bob the Tomato on Veggie Tales.  It was a cartoon about Joseph in the Bible and how he suffered in prison for doing nothing wrong for many years.  Bob the Tomato very eloquently gave the moral of the story: 

"Good things happen to us, and bad things happen to us.  But God works ALL things for good for those who trust Him."  And that's my peace.  Bad things are happening to my family.  But I trust that God WILL work even this for good if I allow Him to.  We live in a fallen world where horrible things DO happen.  We all have free will and when sin entered the world, the world became imperfect.  Children are born with horrible illnesses.  Disease happens.  But....God will work it for good.  That is our hope.  In Him, even in these furnaces of affliction, we can triumph. 

I don't know if it made sense to my friend, but it makes sense to me.  Doesn't make it any less painful.  But it gives the pain a purpose. 

On a lighter note, some friends  (thank you Al and Gaylen!) came over Saturday at the spur of the moment and let Don and I go on a date!  We wandered thru NW 23rd district in Portland (a fun area with lots of shops & restaurants).  We had gingerbread lattes, a nice lunch, browsed around, held hands.  Then we came home and played games with our friends.  It was such a glorious day.  So wonderful to take a break and relax.  And laugh. 

love, Shawna

Nov. 7

We have some super dooper....super fantastic....awesome magnificent news to share!  I'm PREGNANT!  Our dream has come true and we are thrilled.  I'm only 5 weeks along so it's very early but why wait to share it?  The Dr's all tell you, "do NOT announce until after your 1st trimester because 25% of all pregnancies end in miscarriage and think of all the people you'd have to go back and tell."  Well I say, Pooh!  If something were to happen, God forbid, it will be one more trial to walk through WITH our loved ones and friends.  I just don't get the secrecy thing about the first trimester of pregnancy.  If something happened, I'd WANT the prayer support of those I chose to tell.  So there you go - that's how I feel - and I AM THRILLED!  We had only been trying a short time and at 42 years old, I feel pretty lucky it happened so quickly!  Please, if you would, join us in praying for a HEALTHY BABY.  As you can imagine, I am very paranoid this baby will have an illness as well - and my heart breaks at the thought.  But it's very common for moms of special needs kids to feel scared the next pregnancy.  I'm trying to give it to the Lord and leave it with Him, but it's hard. 

I'm due July 9th!  And I feel great as of 5 weeks - no sign of morning sickness yet.   If you're wondering the burning question, "HOW is she going to manage Cody plus being pregnant?" I'm a step ahead!  We've already found a part time nanny who will start in the 2nd trimester.  So all the ducks are in a row so far.  I'm working with Cody on climbing a step ladder onto the changing table and into the car to preserve my back.  It will all be a challenge, for sure.  But one we are up for.

Already we feel an anticipation and joy in life that has been so absent for the last year and a half.  I've shed so many tears and waded through so much pain dealing with little Cody's never ending seizures the last year and a half .... we are DUE to feel sheer joy and gladness for a change.  Don't get me wrong, Cody brings us much much joy.  But there's just a constant heaviness when he seizes so often.  You start feeling like this is all your life will ever be - watching your child's body be taken over, twisted, jerked, breathless right before your eyes.  I also secretely feared our string of bad luck would continue and I might not be able to get pregnant at my ripe old age.  So this is a relief, a blessing, and gives our lives a forward momentum we needed.  Plus, I already feel a bit less "tunnel vision" on Cody.  It's hard not to become obsessed when your child is ill as he is - it seems every waking second is devoted to research, Dr. appointments, therapies...."fixing" him.  I needed my focus to broaden - I needed to stop obsessing about every move he makes and just let things be.  And this new baby has offered that to me.  

The photo below is all of us at the store buying the pregnancy test!  and the other is when I took both tests, then wanted to include Cody in the picture with the pregnancy sticks.  Well it took about a second for Cody to grab it and use it as a teether (don't worry - the yucky end was covered up!)  I must go to bed and get some rest - love to you! Shawna

Nov. 10

My little one had his first dentist appt!  I was sweating thinking about Cody in a dental office - with all those sharp instruments and all his flailing energy!  Plus, I had NO idea how the dentist would get a look in his mouth!  The boy never sits still!!  But bless Cody's heart....the guy had Cody sit on my lap facing me, then had him lean back and put his head in the dentist's lap.  Cody laid so still - as the dentist poked and prodded with those big silver pokey looking things!  Course he tried to bite a few times so they got out their "dental pliars" to hold his mouth open which he didn't like much!  But Cody was a real trooper!  And the best news - no cavaties!   I had lots of questions cuz Cody has a huge space between his front teeth and what's called a "frenum" where his gums have grown in between his front teeth in that space.  But the dentist said not to worry till his permanent teeth are in.  Whew.  One more thing off my list!

On the bummer side of things, Cody was up all night (and so was I) tossing and turning with reflux pain.  We had to increase his ratio on the keto diet which gives him more fat which makes for huge heartburn.  But the great news is that since we've increased the ratio, i haven't seen a horrible seizure in 4 days!  Lots of little ones, but none of the 2 minute whoppers that took the life out of me!  I pray we're going to see more of the same!  Please pray for this reflux to subside and for the seizures to continue to abate.  The little seizures he's having - probably 4-5 a day - are when he stiffens for about 15 seconds and recovers instantly.  So NOTHING like the 2 minute doosies.   Praise the Lord!

I'm feeling great (altho tired from lack of sleep due to Cody - and fatigue from pregnancy.)  But I have to say - not a sign of morning sickness YET.  With Cody I had terrible nausea the 1st trimester....but they say sometimes the 2nd baby is different. 

My sister and her kids are here this weekend to help out which will be nice.  Don gets to go golf while they're here - a true golf fanatic - he'll even go out when there's water 2 feet deep on the course! 

That's it for now - love to you!

Shawna 

Nov. 14

I dreamt last night that Cody spoke his first words!  I was swinging him and saying "one, two three!" and he repeated me!  Then he said, 'ready, set, go!'  In the dream, my jaw dropped and I was SOOOOO happy.  I remember feeling like all of life had changed.  Then I woke up and literally said "darn, just a dream" out loud.   But who knows, maybe it's a prophetic dream!  :)   Let's hope so!

Okay, I'm officially feeling pregnant.  I took Cody for a stroller walk this weekend, and right at the end of the street, I tossed my cookies!  Luckily there were no neighbors out.  Hopefully none were peering thru their curtains either!  How embarrassing.  I hightailed it home and have been queasy ever since.  Also very fatigued.  All normal pregnancy stuff for which I'm grateful! 

I have an appt. for an "ultra screen" at 12.5 weeks - it does early detection of any genetic abnormalities for oldy moldy moms like me who are over 40.  On one hand, it seems pointless because no matter what might be wrong with the baby, I'd still have it and love it.  On the other hand, if it told me there are NO genetic issues, I'll be so relieved the rest of the pregnancy.  On the other hand, if they tell me there IS something wrong genetically, it'll make the rest of the pregnancy very trying and an emotional roller coaster.  But I think my desire to be relieved outweighs my fear of being upset at the results, know what I mean?  Course nothing's fool proof.  They told me Cody had no genetic chromosonal problems while still in the womb, but he still wound up with one.  So there are no guarantees.  But it would be nice to at least rule out Down's, spina biffida, etc. 

On the homefront, still battling seizures.  Oh, I hope one day I don't have to write that!  Some days it seems the diet is making  a dent, but then a molar will start to pop thru or reflux will hit.  We just can't seem to create any consistent pattern.  But he's still a trooper and eats every darn bite of heavy cream, chicken and tiny smidgen of carrots or some other carb every day.  He really is so good natured.

He took a fall yesterday and whacked his face right below his eye!  I about died.  He's still so wobbly and it's so hard to guard every move he makes.  I'm constantly leaned over trying to prevent any fall.  It's exhausting.  And on this occasion, his head went straight for the bookshelf with a big "THUD" followed by what seems hours of screaming (it was only a few minutes.)  I dreaded holding his face up to inspect the damage fearing stitches (and him being knocked out with all his breathing issues - it would require hospitalization and an anesthesiaologist).  Luckily and thankfully, there was a tiny cut that didn't even bleed much and a bruise.  That was it.  Could have been so much worse!  I'm learning to keep a keen eye for thanking God for things that "don't" happen these days.  How many times a day do we escape disaster?  On the road, in air planes, in our home...there are so many moments we may have been in peril that God doesn't allow.  So many accidents avoided.  How often do I acknowledge those?  Not often enough. 

Well that's it for today - I pray I'll hear my son's first words soon!  want to pray with me?  love to you, Shawna 

Nov. 16

Wow what a scare.  Yesterday for some reason (teething?) Cody went into wild seizure mode.  He had five that were 2 minutes long and during two of them he turned BLUE.  He stops breathing during the long seizures for some reason and can't catch a breath.  I FREAKED OUT.  There's nothing more horrible than watching your child's lips begin to have a blue ring around them, then it spreads to around the eyes, then the whole face.  Right about the time I was going to start CPR and call 9-1-1 he caught a breath and the blue went away.  I tell ya, life is SO stressful. 

I immediately  called the neuro who said we could take him to the E.R. if we want - or we could use a rescue medicine to try to break the cycle.  Apparently when seizures get bad, they are sort of like a fire...they spread and spread and gain momentum.  A rectal gel of Diastat (liquid valium) supposedly works instantly and stops the progression.  So that's what we did.  For most kids, diastat instantly puts them in a daze and to sleep.  For Cody, it just made him hyper.  Once again, he breaks all the rules.  So here we were at 9pm, having just given him the diastat, waiting for him to pass out, and instead he's doing circles in his play yard yelping and screeching - ready to party.  Poor Don had him last night and Cody didn't go to sleep till midnight.  But it's 1:30p the next day now and he has had 2 seizures, but hasn't turned blue. 

I have to say, as I held my blue baby in my arms yesterday, I screamed to God, "haven't we been thr0ugh enough?  Aren't seizures bad enough?  Do we have to now panic every time that he's going to turn blue?????"  I got no answer.    :)     But there really are those moments, for all of us, when it just seems impossible that one more thing is piled onto our load.  Just when we're at the breaking point, one more stress arrives.  Crazy.  I know I can't handle this, but I know God can.  Once more I am forced to give up all control.  Once more I must give even my child's very breath to the Lord for His safe keeping. 

This is a new, ugly twist that I wish were just a dream.  I pray for a way out.  I beg for change.  

And in the midst of it all I've got the worst case of nausea and fatigue - I'm just not getting a thing done.  At least it's for a good cause:  a new baby brother or sister for Cody!  

that's it for now - wish it was better news but....it is what it is. 

with love, Shawna  

Nov. 19

Gosh I wish I could say things have gotten better  - but alas they have gotten worse.  Cody had 5 of the 2 minute seizures although we've figured a trick to keep him from turning blue (at least so far.)  We blow in his face pretty hard so he kind of braces against it and something about that makes him gasp for a breath. 

Honestly, I'm totally exhausted.  He's having horrible reflux from this diet.  He's teething like crazy.  Hasn't had a bowel movement in 4 days.  etc etc etc.  I just HATE this diet right now.  Shoving all this cream, mayo and oil down him when his reflux is driving him nuts.  Our dietician is amazing and lets me call her at home on the weekends (which I take probably too much advantage of!)  She even said that Cody is her toughest case in 10 years!  No matter how much we change/fine tune...he just keeps having problems.  I am SO tired of trouble shooting.  Is a drug any better?  Probably not.  Choose your poisin, I guess. 

In the midst of it, I'm about as naseous as is humanely possible!!  And sooooooo tired from this pregnancy.  I walked into this with my eyes wide open, fully expecting to encounter these things.  But it certainly isn't easy.  Just preparing Cody's food about makes me throw up every meal.  I can't stand the smell of the things he has to eat.  I think I"ve had a new craving every single day!  Today it was sweet pickles and grapefruit of all things!  Yesterday it was cheese. 

Mostly, though, I'm just TIRED of seizures.  These 2 minute long doosies just suck the life out of me.  I bawl after each one.  Cody passes out after each one.  It's just so devastating.  Just when we get a couple of good days under our belts, these things are back.  So tiring.  So depressing.  Sorry to be a downer...but I think Don and I have reached the end of our seizure rope! 

I pray this Thanksgiving we will be able to give thanks for some level of seizure reduction.  It's Cody's birthday the 26th....we're having a small family party.  I'm just too tired to do much else.  Poor little guy can't even have so much as a crumb of his own birthday cake!  I, on the other hand, will probably be eating my piece with a sweet pickle and grapefruit on the side! 

love to all, Shawna 

Nov. 26 (Cody's bday!)

Happy Birthday, Cody!  He turned 2 today! 

What a week it's been.  Mon-thurs we saw a huge reduction in seizures...only 1-3 a day!  And those were TINY.  I was euphoric.  Then, as luck would have it, things took a turn on Friday.  Cody started having those horrid 2 minute seizures where he turns blue again.  To make matters worse, we were on the road visiting friends in Bellevue!  I was shattered.  I was SO sure the diet was finally working.  We were up all night with him Fri. night and Sat. while at a friends brunch, he had another "blue" one so we were forced to give him a rescue med.  What a let down.  Our friends were amazing...about 10 of my most dear and beloved friends from the Seattle area gathered together - some had never even met Cody!  It was such a blessing for me to be surrounded by these people who I have such a long history with.  To watch them hold Cody, love on him....ask about him...give him gifts.  Wow.  It was a bad seizure day, but an incredible day otherwise. 

Today is better - and I discovered that the reason his seizures flared was that his 4th molar is breaking through.  So we're probably looking at a month or so of trouble before it's all the way in.  Yikes.  BUT IT'S THE LAST DARN TOOTH!  I am so tired of teething!!! 

Well, I'm tired period, I guess!  As goes with the pregnancy territory, my back hurts, I'm nauseous, etc.  Guess it won't change till this 1st trimester is over.  It's been wonderful having Don home for 4 days!  I'm going to go thru withdrawl tomorrow when he goes back to work - he is such a help mate. 

That's our news for today - I have "pumpkin custard" in the oven and must check it.  I'm trying a new recipe for Cody's keto diet for his birthday. 

love to all,

Shawna