HOW DID IT GET TO BE DECEMBER ALREADY???!!!??? Wasn't it just summer? Holy smokes. Time flies when you're having fun...that was a pun. This is NOT fun. Cody still hasn't .... ummm... had a bowel movement in 8 days now. We started trying fixes beginning on day 4 and nothing's worked so he is now on a prescription laxative which also is producing no results. He has been up all night for the last 3 nights screaming...and is running a fever. Poor little tyke. He is just miserable as you can imagine. Please pray for relief. He's been constipated for 3 weeks. The stress has made him have more seizures of course. Nothing with him is uncomplicated.

As I look out my window, I see the very first snow flakes of winter falling. This will be Cody's first snow. What a beautiful sight.

That's my report for the day. No sleep. Miserable baby. BUT it IS snowing and that makes me smile. Thanks, God, for that boost.

with love,
Shawna

Dec. 2

FINALLY - our little trooper got some relief! But we had to resort to an enema. He still is running a fever and is very lethargic so prayer would still be great. We were up 4 hours again last night - not from him screaming at least - but from him just being awake. Sleep continues to be our number 1 prayer request (aside from healing, of course!) And the stress has made his seizures continue to sky rocket. Thanks for reading and your support...it means the world to us. Despite his ailments, he's still such a joy in every possible way. His smiles are rare and his laughs even more rare - but he is full of joy, I can tell. It is an honor and a privelige to serve my son. I am in awe of him every single day.

love,
Shawna

Dec. 7

One more fire to put out - I threw my back out 2 days ago and haven't been able to move much since. Picking up Cody is about a 10 minute ordeal...positioning myself perfectly...bending "just right"...then wincing in pain as I lift. It's not wonder my back failed lugging my 27 pound babe around all day every day. I'm surpried this didn't happen sooner. Please pray for relief and quick healing - I have to be able to lift him and do the rest of my daily duties because I don't have a back up!

We had a wonderful family bday party Saturday and Cody had the shining moment with his own baby cake. He sat in his high chair and just grabbed at frosting and cake for about 15 minutes - shoving it into his mouth, sucking it off his fingers, rubbing it all over his face. It was a riot. We are blessed to be able to have him for a whole year now - and look forward to the year to come.

He's still having lots of seizures and we have one more week at the very highest dose of zonegran before we call it quits. Looks like one more drug that's failed. On to the keto diet next, most likely. On that, I have to take his blood sugar level 3 times a day with a needle! It will require constant monitoring, logging, weighing food, taking blood and keytone levels...but I'm up for the challenge. ANYTHING to get these seizures under control!

With love,
Shawna

Dec. 11

We just got finished installing a swing INSIDE our home! It hangs proudly from the ceiling in our bonus room and Cody LOVES it! He discovered the pleasures of swinging in physical therapy and it seems to be one of the only times he calms down and sits still for awhile. Usually he's on the move - constantly in motion. So this has been a fun addition and his smiles and out loud laughing have made our weekend very bright!

Conversely, Cody's been doing this weird head thing where he looks up and to the left constantly - almost the entire day. We are afraid it is seizure activity and if it is - it would mean that he's seizing pretty much all day long with small breaks in between. I'm going to watch him closely tomorrow and perhaps ask for a new EEG to determine if it is indeed seizures. Which begs the question, what would you do about them? We are on the max doses of 2 anti seizure drugs - but in cases where consistent seizures are suspected they revert us back to the rescue meds like valium and tranxene which will sedate him. I just don't know how many more fires I can put out - it is getting so exhausting finding a new problem every darn day.

Good news - my back is better and I can finally lift him without wincing. Still have probably a week before it's pain free completely. Ugh. But it is definitely more bearable.

Yesterday we went Christmas shopping with Cody in tow - and he was the perfect little companion - fascinated by all the twinkling lights and bustle. Don and I shared many glances, though, as we passed by other families with healthy kids enjoying the holiday. It's SO hard not to feel envy. So hard not to scream, "why us? Why Cody?" He is so frozen in time. I spent about 15 minutes trying to get him to bang a drum he got for his birthday. I put it between his legs as he sat there and I took a drum stick and beat on it over and over. Then I put the stick in Cody's hand and he just sat there with it. He had NO impulse to beat it as I did. No matter how many times we did this back and forth - nothing. He just doesn't seem to "get" anything other than sitting and trying to stand. I've tried to get him to clap or wave over and over (and over) and it just doesn't register. It's so difficult to try and try and try - with never a glimmer of understanding on his part. But as his physical therapist always says..."one day he WILL clap. Or beat that drum. Or wave. ONE DAY it WILL happen." I cling to that. At a year of age...these things are long overdue.

Yet in all his Cody-ness...he is absolutely perfect to me. He is flawless to my heart. Because he can't do what the "normal" kids do, we revel at the smaller things. How we can get him to smile if we work really hard at it. How he makes solid eye contact now. How he tries to hold his sippy cup all by himself sometimes. Each of those milestones mean more to us than the "regular" ones could have ever meant. He is still scratching and clawing his way thru this horrible illness - and managing to move forward in his own way - in hiw own time. For that we are grateful.

That's all for now - time to come up with something for dinner! Luckily I have a very easy to please husband because it may be a jar of pasta sauce and noodles!

with love,
Shawna

Dec. 22

WOW - did God give me a glimpse of truth last night.  We went to our church's Christmas program.  I didn't really "want" to go because I'd seen it on Sunday - and Cody had a particularly tough seizure/teething day.  Plus Don is having a hectic time at work closing the books and such.  It just didn't make sense for us to go last night - but we did.  I've never felt God "speak" to me.  I wish I was one of those who has.  But very occasionally I feel him "nudge" me and the reason I detect it is because it's usually in a direction I wouldn't normally go - or don't want to go!  That was the case last night.  So off we went - and immediately Cody got fussy so I took him into the church lobby and hung out on a bench.  About the middle of the program a man was sitting next to me - listening to me tell Cody's story to another mom who has a 1 year old (who, by the way, was walking all over the lobby all by herself.  Always hard for me to see.)  The mom asked me about Cody and I gave her a short thumbnail version of what he's been through.  She was very pleasant and after our exchange she walked away.  The man turned to me and said "just be glad you have him."  I looked at him...curious what he meant.  "We lost our daughter at 9 months old.  They say it was SIDS but she was the healthiest baby you ever saw.  Just be glad Cody is HERE."  I was stunned at his vulnerable statement...and instantly humbled.  This Christmas I will snuggle up to my little boy, touch his hair, smell his skin.  This man will spend Christmas with his arms empty - no little girl to hug and kiss.  No arms reaching up to him to pick her up. 

Despite all of our struggles...Cody IS here.  I must remember that and be grateful for what we HAVE.  Thank you, Lord, for this concrete reminder that I must remember that I have so much more than many. 

Dec. 27

Here is our new drama.  Cody and I both have the flu.  He woke up with it on Christmas day.  We were at my sisters in Gig Harbor and as we woke up to Cody throwing up and screaming, with a 101 degree fever...her electricity and water went out due to a storm.  Needless to say, Christmas was a nightmare.  We had no way to make bottles, go to the bathroom, etc.  So here I was throwing up with a fever laying on one couch, and here he was doing the same on my sister's lap.  The power finally came back on in the afternoon, and we drove home when we both had stabilized a bit. 
 
Overnight, his temperature went up to 103.5 despite heavy doses of motrin - and he had a small febrile seizure this morning.  Please pray that this flu would pass quickly for both of us.  His lowered immune system makes any illness much more critical.  Please pray that his temperature would stay down consistently, for no more febrile seizures, and that this wouldn't trigger an escalation in his infantile spasm seizures.  He is just miserable and cries all day and night.  I, of course, am miserable too but God's granting me the ability to take of him anyway...which is pretty cool.  Don's home today but we are running on no sleep and I am going to be caring for Cody solo beginning tomorrow.  Mom with the flu taking care of baby with the flu - not a great combo. 
 
Please also pray for no complications like infections, bronchitis, pneumonia...which are all common with kiddos with low immune systems.  And while you're at it - prayer for sheer emotional and mental strength is much needed.  It took so much planning and packing to take Cody on a road trip with all his meds and special needs...only to wind up with no Christmas celebration...and to have to turn around immediately and come home.   I am waiting for God to give us a breath...to give us just a small stretch with no crisis.  It just doesn't seem to come.  We are at our wits end.
 
Thank you.  I am so grateful for your prayers.
 
with love,
Shawna

Dec. 27 part II

To anyone who found time to pray for Cody, THANK YOU.  He is doing much better and his fever is down to normal.  Whew.  He slept most of the day, as did I.  What a snuggle bug he is!  I am feeling much better too.  I think the worst of it is over.  I really think your prayers have helped...
 
ESPECIALLY in this regard:  Both yesterday and today, he has only had 1 SEIZURE each day!  That is a miracle.  Prior to this flu he was having up to 15 a day and they had never been so bad.  But now he is down to 1!  I'm chalking it up to prayer - because the stress from having the flu would normally cause seizures to at least double in number.  And it's especially weird because he's sleeping more, which means he's waking up more - and waking up is what triggers his seizures.  He's woken up about 10 times day and only 1 time has had a seizure!  
 
PLEASE PRAY THAT THIS WOULD CONTINUE!  Please pray that this would be our Christmas miracle. 
 
I'll keep you posted,
with love,
Shawna

De. 29

STILL no more seizures!  He went Mon/Tues. with one and yesterday with NONE!  Today he is doing that "aura" type of left headed movement that always preceeded a seizure, but the seizure doesn't follow.  We are cautiously optimistic...it is often the case that seizure go away when a new drug begins...only to return shortly after.  It's called the "honeymoon phase."  We pray that is not the case.  Cody started Clobazam 6 days ago as a bridge drug before the keto diet. 

Since the seizures went down in number, Cody is smiling again - laughing - I can't believe what a toll those seizures must have been taking on a daily basis.  We're taking it one day at a time - and are just grateful for each day that is seizure free - however many there are.  I spent yesterday just holding him and playing with him, saying under my breath, "Please, God...don't let them come back. Don't let them come back." 

How lovely it is to have him wake up without instantly going into a 5 minute seizure.  AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH.

love,
Shawna

Dec. 30

Hi there - it is with euphoria that I tell you that Cody's been free of his infantile spasm seizures for THREE DAYS!!  It happened just after his Christmas flu and fever of 103.5 - he just stopped having them!  He started a new drug called Clobazam right before Christmas - we're not sure if it's the drug, or the fever (sometimes seizures react strangely to fevers.)  We're also not sure how long this will last - seizures have a mind of their own and often leave only to return days or weeks later.  But for now, WE ARE GRATEFUL!!!!!  The Clobazam was just a band-aid drug as we waited to go on the keto diet, but obviously we'll stick with it if the seizures stay away! 
 
On the flip side, a disturbing new thing is going on:  he's turning his head constantly to the left since yesterday afternoon.  The neuro said he's not sure if this "left headed" thing is seizure activity - he's more leaning toward some kind of movement tic or disorder.  Of course we can't get an EEG to determine that till next Friday!  If it stays this dramatic, we might check into the hospital this weekend where they'll have to give him an EEG immediately. 
 
It's very alarming - at a time when we want to just enjoy our little one seizure free.  He literally sits - all day - looking to the left.  He stops if we put him in his swing - but that's about it.  On top of that, he won't take any fluid - no bottle or sippy cup.  His mouth is newly uncoordinated - he can't quite close it around his binky or around a spoon.  He will eat baby food, thankfully.  This could be connected to the new med - who knows.  He's also having screaming spells every hour or so and we have no idea why.
 
Lots of stuff happening - none of it can be explained.  And it's a 4 day weekend which means we're on our own till Tuesday.  Please pray that this left headed stuff goes away!  And also that he'll fluids again.  And of course, that we'd be able to solve the screaming problem - whatever it is.
 
The neuro said we could be "cautiously optimistic" about the seizure control - and that's exactly what we are.  We take NOTHING for granted - and are thrilled to have even one day without Cody jerking into a seizure every hour.  But this new stuff is pretty daunting too - thank you for your prayers!  I'll keep you posted!
 
with love,
Shawna