Hello there.  What a week!  Our house in Battle Ground closed and we bought a house on the Eastside of Seattle!  Now we're having it painted & re-carpeted plus knocking out a wall so I can see Cody at all times.  Should be able to move in within 1.5 weeks.  It will be a wonderful home for us - we're really excited.  No stairs!!!  Yahoo!!!!!  So much change in so little a time - my head is spinning.  Today was our first Sunday back at our beloved Calvary Chapel Eastside and what a treat.  Cody had his first time in childcare at church (thankfully) with no incident!  Kirsten Richardson (bless her heart) let him walk & roam - kept him content with cheerios - and it was a huge success.  I sweated a little during the service imagining him having one of his "I'm not going to breathe anymore" seizures and freaking out the whole child care staff.  But luckily, didn't happen.  Whew.  He was held, hugged, and loved by dozens today - and he smiled much of the time.  What a dream come true to see him flourish under the loving attention of our dear church family.  Pastor Robert led worship - which I triple love.  His sermon was super fantastic - about the transforming affect Christ has on our lives and how we literally "metamorphisize" like caterpillars into butterflies with Jesus.  I am so excited that this is the place I will raise my children - that I will see them walking the corridors of this church holding hands with these saints I call my friends.  I'm excited for him to be known and loved for exactly who he is.  I'm excited for him to have a place on the earth where he isn't judged by whether he's "normal" or not...but simply understood as a child of God.  The rest of the world will try to peg him - to define him - by what he can and can't do.  But within the boundary of this church family, I believe, he will just be...........................Cody.  As it should be. 

Since I last wrote - his seizures have subsided once again into 1-3 small ones a day.  Perhaps God sensed my desperation as I wrote the last entry and permitted a break.  For that I am grateful!  I went to our Women's Bible Study thurs. night where Kim taught - what a wonderful time.  And how rich to see my dear friends!!!!  One thing that really struck me that we touched on was how often we want relief...rather than Jesus.  Relief from pain.  Relief from stress.  Relief from trials.  So we (I) seek to control my circumstances - muster "my" strength - "figure it out" till I'm blue in the face.  Rather than realizing that Jesus IS relief.  That fixing or controlling my circumstances doesn't provide the relief I am so desperate for....HE DOES.  Surrendering my circumstances, fears, pain to Him is the only way to experience true relief.  Because guess what - the minute we have this particular trial mastered on our own strength, there will be another one right around the corner!  And it will begin again.  The Lord wants me to be hidden in Him and relieved by Him.  So that all the roller coasters of life, all the trials that always come, will not leave me undone...but closer to Him...who provides the only rest our souls can know.

It's so hard though, isn't it!?!  It's completely counter intuitive to not worry about our circumstances...almost feels wrong.  Yet it's right there in the Bible.  "do not worry."  So it MUST be possible, right! 

On a lighter note, baby is kicking up a storm and we're trying to find a good name for a boy.  Don LOVES his new job.  We LOVE our new home.  And I love Cody's new therapist!  He did so well last week at his first therapy session!  He made great eye contact, signed for  "more" on the swing.  Smiled.  He has come a long way in 3 short weeks since his last session in Vancouver!  His eye contact has improved 100% which is so wonderful for us.  He is our little warrior!  He just won't give up! 

I am off to bed - big day tomorrow - meeting with our building contractor, painter, and going to therapy.  I'm tired just thinking of it! 

Shawna

March. 9

Hi there!  Well we are officially "Home Owners" again!  Our house closed today!  We move in on the 19th after the wall, paint, carpet, etc. are finished.  We are so excited about the construction we are having done.  We removed the entire wall separating the living room and kitchen - and it looks awesome.  The house is open, spacious, with high cathedral ceilings - and will be perfect for us.  I went outside to the back yard today and there are daffodils by the dozen blooming, crocus, and little purpley flowers I don't know the name of.  It was a nice "welcome to your new home" moment - as if the flowers themselves were glad to have us.  To anyone who has remodeled or renovated...my hat is off to you!  Finding trustworthy and capable contractors is the new bane of my existence.  I never thought I'd have to become an expert on paint, carpet (who knew you had to buy the pad in "pound" increments?  I chose 8 lb. pad...whatever THAT means!)  After hating the color of paint I picked (that they did the entire house in - it was band-aid beige)...I had them do the 2nd coat in a more neutral tan tone that is much much better.  But scheduling these people, getting estimates, choosing who to use and then the materials...what a headache!  The sellers paid for everything but the wall so at least we had that going for us. 

And in the midst of all this, Cody continues to be the A+ trooper!  His seizures haven't gone back to being "blue" and breathless for a bit now.  He tags along on all my trips to the carpet store, the paint store, home depot, etc.  It is getting a bit tougher to carry him as I am developing the pregnancy "waddle".  But I did manage to go to our friend's house tonight to catch up on what we've missed - our church is having a swing dance class and we missed the 1st 2 weeks so Pastor Robert (also known as Fred Astaire) got us up to speed.  So we'll go cut a rug tomorrow night and learn the final steps at the last dance class.  Our dear friend Carolyn is watching Cody tomorrow night and on Sunday at church - she has such a heart for special needs kids.  The special needs community is all the richer for Carolyn's devotion. 

Speaking of that community, Cody has his first "big boy" class at the Kindering Center today.  It's 7 kids total + their moms and it's an hour and a half.  First they wash their hands, then have a circle time with songs, then it's free play, snack time, and goodbyes.  I prepped the teacher that Cody will not sit like the other kids and that I'd have to chase him the whole time.  She was fine with that and said that whatever we needed to do was just fine.  To my shock and amazement...he sat thru 1/2 of circle time and ALL of snack time!  In a chair!  At a table!  That is a FIRST and a milestone for us.  He sat right there with the other tykes and ate his bananas and chips.  I got teary eyed sitting there with him...he has come so far.  Just a month ago at his class in Vancouver, he wouldn't sit for as much as a second before he was off to explore.  Today he sat for 15 minutes straight and didn't try to get up once.  My favorite part was when the aides took the kids and us moms got to sit with a family counselor who they bring in 1 a month...and just chat.  What depth between women who'd never met before.  I felt humbled to be in the company of all these heros - each making the best of a tough situation.  Each of us shared where we're at in this journey and we all agreed that you never really 'get over' your child being delayed and physically challenged.  Each new age and season brings something new to grieve.  But there was strength in all of our resolves - that each day is a new day and our children are just perfect the way they are - and that we WILL survive and thrive despite the pain and the challenges.  Young moms, old moms...some with children who are severely impaired others with kids who are just a little behind.  I'd say that Cody is definitely the most delayed of the group, which was heart breaking for me.  All of the others could work with clay, play without supervision, etc.  Cody just tried to eat the clay and can't be left alone to play.  Not so much fun when you're at a school full of "delayed" kids and your child is the worst off.  But he tries so darn hard - and his spirit is so special - I burst with pride as I watched him walk thru the door and smile at the new faces...eager to embrace this new experience as he always is.  And the teachers are so interested in making this work for him that I kind of forget how challenged he is because we're all caught up together in trying to find ways to break through to him.  He is my buddy, my companion, my heart and soul.  Seeing him sit on his teachers lap and smile as he touched her cheek reminds me how amazing he is and makes all the negatives melt away.  I am a lucky mom, no doubt about it. 

Goodbye for now, Shawna

March 11

Another fantastic church service today - Cody was meet with cheers, hugs, smooches and smiles.  He did awesome in the nursery with Carolyn (who will heretofore be known as the baby whisperer.)  I walked in after the service and Cody was sound asleep on Carolyn's lap.   Course last night poor Carolyn wasn't as lucky.  She watched Cody while Don and I took a swing dancing class at church.  And Cody took that opportunity to have what sounds like the biggest blow out of his short career as a child.  Poor Carolyn....she had to scrub the entire high chair, take his socks off, clean him up with an endless amount of wipes.  She gets a gold star for the week!!!!  Other than that, they did great together - Cody really seems to have bonded to her which blesses me to no end. 

The dance class was a hoot.  Being as pregnant as I am, it was no easy task to haul my freight around on the dance floor but I managed.  But I'm just at that point in the p.g. where my ligaments are starting to stretch so walking was a bit painful afterward.  It was nice to get out and be a couple, though. 

Cody's seizures are still pretty nicely under control.  He's been having 1-3 a day that are mostly smaller in size.  He's at the highest end of the medicine trileptol....so if it doesn't banish them completely we may have to add an adjacent drug....which would be his third.  He's also on a daily mild tranquilizer.  Oddly, on two drugs currently, he has blossomed with smiles, development, personality...the opposite of what you'd expect to happen with drugs.  But for Cody (and many others with neuro problems), I think these drugs allow their brains to make the correct connections instead of misfiring all the time...and they become more organized in their thinking...and more able to feel happy than when their brains are shooting fireworks non-stop.  I have bucked the drug world this whole illness, but I have to say that this particular combo really seems to help him. 

His physical therapist showed me a great trick to get his pincer grasp working - when he reaches for a cheerio, I push his last 3 fingers in and hold them so that only his thumb and index finger are sticking out.  With my other hand I press the cheerio against his index finger and his little thumb comes up to grab it.  I only had to do this about 1/2 a day and he reaches primarily with his pincer grasp now!  I don't know why tasks like this are so much easier for him to pick up than mimicking a wave or a clap, but they seem to be.  Every day I search my mind and observe him --- to try to figure out what the key is to unlocking his development.  Seeing him latch on to the pincer exercise so quickly gives me hope that he can perhaps collect a bunch more skills in the near future!

God is good to us right now.  We are enjoying this break in huge seizure activity and this burst in smiles and such.  Life feels so much lighter without 10 seizures bogging us down all day.  So for this, I am grateful. 

with love, Shawna

March 17

Ahhhh....I am at the Inn at Semiahmoo resort for a weekend church ladies retreat!  Heaven!  Don has Cody all weekend and I slipped away to paradise - full night's sleep - scrabble - meals served to me - great Bible Studies and great friends.  So needed. 

Meanwhile, people are painting, cleaning and carpeting our new home and we move in Monday.  Unfortunately the process has been on huge glitch after another - paint that I didn't like, then paint that didn't match....contractors cancelling....work being done poorly.  Boy did I need this getaway! 

We had a fine week - Cody is doing well.  His seizures are still hovering at about 3-5 small ones a day.  He's regularly attending therapies now.  He's really thriving in his co-op class on Fridays.  I'm really bonding with some of the moms as we share the struggles of parenting a special needs/disabled child.  I shared this week how I took Cody to an indoor play park.  I wanted him to get out of the cabin and play with some fun toys.  This was a gymnasium full of trikes, cars, basketball hoops, etc.  Sadly, it was a disaster.  No sooner would Cody climb onto the teeter totter and I'd push the other end...than a little kid would climb on the other side expecting to play with Cody.  I'd look at the mom and say, "um, my child is delayed and he really can't play on this with another child" - and inevitably the mom would huff away.  I was shocked at how rude these moms were!  Cody would get into a little 2 seater car and another kid would try to climb right in.  Well, Cody's just not safe in that close proximity with another child - he pulls hair, pokes eyes, and just doesn't understand yet.  So I'd tell the kid's mom our tale again:  "my child is delayed and can't really have another child in the car" and again...the mom would give me a weird look and grab her child...as if Cody has the plague.  So I tried solo things instead - like putting him on a trike - but he just doesn't keep his feet on the pedals and they drag on the floor.  He doesn't understand peddling any of the cars with his feet.  So there was just nothing much for him to do in the long run.  It was just so exhausting dealing with these other kids and their moms - that I wound up leaving in tears and having my temporary little break down in the car.  But the good news was....I was side lined for about 10 minutes having my pity party.  Then I gathered myself together and we zoomed away - and it was forgotten.  A few months ago, an experience like that would have ruined my entire day.  Now it is a fleeting pain that I can get past somewhat quickly.  Still painful...but I think I may be just getting the muscle developed that deals with the disappointments this journey brings.  Cody is just so darn sweet - and is oblivious to the weird looks we get and the rude things people do. 

I can't write much more because lunch awaits (lunch I didn't have to make and won't have to clean up!)  Thank you Lord for this respite - for my body to get some sleep - for my brain to take a break - and for my dear husband to have special one on one time with his buddy Cody. 

love, Shawna

March 24

I am on a friend's computer so won't write much for now - we don't have internet access at our new house yet but will in 1 week so my entries will be scattered till then.

But we finally have all our possessions under 1 roof!  Yay!  Now the laborious act of unpacking has begun.  Ugh.  Cody has handled things well although he's having huge gastro issues for some reason.  He's throwing up a lot and his tummy is really rumbly all the time.  We have a gastro Dr. appt. Friday so I'm anxious to see what's up.  The tummy troubles made his seizures flare up this week but they seem to have abated a bit now. 

I'm 6 months along and feeling the fatigue like crazy + the joint/ligament pain.  Kind of hard to hobble around and unpack all the big boxes but I'm managing with the help of some awesome friends!!

That's it for now - must run!  Love to all!

Shawna

March 29

FINALLY I have internet at our new house!  Whew.  It has taken a full week to get our phones working.  Seems everything that could go wrong, has.  Finally today a repairman came out and said he was charging $95 a half hour to fix the unidentified problem with our phone lines.  I turned white as a sheet imagining hours of work and a huge bill.  I told him I wanted to discuss the problem before he fixed it.  During our conversation, I noticed he had the classic sign of neurofibromatosis (bumps on skin) which is a neurological condition often accompanied by seizures.  I told him my son had seizures and he lit up like a Christmas tree and we bonded immediately.  He told me he's had seizures his whole life.  Well, after much chatting about seizures, EEG's, grand mals, etc...he declared that our "fix" was "on the house!"  Yahoo!  For ONCE, seizures have worked in my favor!  It was an involved repair...there were shorts and problems with how the house was originally wired.  So he saved me lots of moolah!  I rewarded him with a dozen chocolate cookies and a huge thank you.  And I quickly threw up a "thank you God!" to boot.

So now I can return to my regular blogging - thanks to those of you who noticed I wasn't posting regularly.  It has been CRAZY crazy crazy pulling off this move.  Finally we have all of our belongings under 1 roof - they're just scattered every which way.  Setting up the phones & the computer have been a nightmare.  We have a gas dryer that has to be installed very specially which we haven't had time to do so our dirty clothes pile is near the ceiling.  I may be showing up for my Bible Study night in a taffeta formal as my pageant gowns are my only clean clothes left!  haha.  We had several "handyman" jobs upon move in that we were prepared for - but our household handyman (Don) has had to work late and work weekends...so all of our kitchen drawers are broken at the moment.  There were several 'fixes' we knew we'd have to do ourselves since the house is 1988...but there's just no time.  Cody sleeps 2 hours in the afternoon and that is literally my only time to pay bills, get things fixed, shower, cook, clean, try to unpack, make phone calls, etc.  The rest of the day is devoted to his therapies, keeping him happy, managing his seizures & reflux, etc.  Not to mention I move at the pace of a slug being hugely pregnant. 

Luckily last Sundays sermon was on "Mary and Martha" in the Bible.  Martha was a "do-er" and when Jesus came to visit she spent the entire time cleaning, fixing a meal, being busy to try to make his stay fantastic, while her sister just sat at Jesus' feet.  Martha was mad and said to Jesus, "Lord, do You not care that my sister has left me to serve alone?  Tell her to help me!"  Jesus replied, "Martha, Martha, you are worried and troubled about many things.  But one thing is needed and Mary has chosen that good part, which will not be taken away from her."  Our Pastor urged us to have Mary hearts...to stop freaking out about the "undone" details of life and instead take the time to do what's most important - to sit at Jesus feet - to focus on relationships - to learn contentment in these things instead of "doing" all the time.  Boy did I need to hear that.  I immediately took that to heart and told myself (every time something was left un-done or broken) "this will get done eventually."  "Let this go and be patient."  "Focus on Cody right now."  "Take some time to pray instead of scurrying about panicking."  Having an entire home in boxes makes me NUTS - I have a huge desire to be organized and un-packed - especially with an impending birth in July!  But that scripture has really helped calm me and helped me be in less of a rush.  I can live without the internet.  I can live with all of my drawers broken and in a stack.  I can even live without being able to do laundry!  Can I do it happily?  That's my goal. 

In the midst of all this chaos, Cody has not been well.  He had what the Dr. called a "gastric emergency" where he threw up constantly all last weekend.  We have a long-awaited appt. with a new gastro Dr. at Children's hospital in Seattle tomorrow where we will discuss options reg. his reflux & gastro issues.  Sadly, surgery is on the top of the list.  His reflux just won't go away - he throws up dozens of times a day - each time he takes a few bites of food.  His seizures have gottena bit worse as his reflux worsens.  It really is so stressful to see him in duress like this.  Please pray, if you find time, that this reflux issue will be resolved without the need for surgery.  The surgery is major and permanent and has huge side effects (it's called a nisson band where they close off part of his esophagus.) 

Last night I had the first meeting of "mother's share" at Cody's special needs school.  It's about 20 moms (all of special needs children of varying disabilities & ages) and we all just sit in a circle and talk about anything that comes up.  Last night was amazing.  Three of the moms have kids with seizures...one who wasn't there has a 5 year old with infantile spasms!  So I had lots of commonalities.  One other mom has a daughter with Angelman's Syndrome which Cody was tested for but it showed negative.  I've always been mystified because he fits the criteria almost 100% - but the test was still negative.  This mom said that it's often the case that although the genetic test proves negative, the child can still have the syndrome.  So that's a new tree to bark up at our next neuro visit. 

Don continues to love his new job but is getting busier and busier with it.  We are absolutely LOVING being back on the Eastside and near our dear church family and friends.  We've received so much support, love and care it has been overwhelming.  So despite the chaos and stress of this move - we are euphoric that we are here.  Cody is thriving in therapy classes and this week he even started to hold a spoon and dip it in a bowl full of food and bring it up to his mouth for a bite!  I thought this impossible since he is so dis-coordinated with his fine motor skills but he is DOING IT!  Needless to say, our kitchen (as well as Cody and me) are covered in cheerios and applesauce round the clock but I harken back to that sermon example of Mary and Martha and instead of freaking out about it every meal....I simply say....I'll clean this up when I can.  It's no big deal.  My new carpet and freshly painted walls will survive.  Cody learning IS a big deal and that's what's important!  

That's our news for now.  To those here who have opened your homes to us for dinners and included a high chair at your table for Cody....to those who watch him on Sundays at church without a second thought....to those who tirelessly check in on me and offer grocery runs, unpacking help, and the like....THANK YOU. 

love, Shawna

March 30

What a great guy our new gastro Dr. is!  We went to Children's Hospital in Seattle for the first time today and it is also amazing!  I feel we are in great hands.  Dr. Wahbeh said something that absolutely shocked me.  He said Cody does not have reflux.  He has a rare syndrome called "rumination syndrome."  Cody did have severe reflux in the past, but this syndrome is not reflux.  Here's a quote from the literature he gave me:

"This is an extremely rare syndrome which is often seen in the developmentally disabled.  It is one of the least understood of the gastrointestinal disorders.  Those with rumination syndrome are often misdiagnosed as having reflux.  It is a rare disorder characterized by volunatary, habitual regurgitation of stomach contents into the mouth for self-stimulation.  A past history of severe reflux in early childhood reflects evidence that rumination syndrome may be an unconsciously learned habit as a consequence of refluxing for so many years." 

WEIRD.  So basically, the theory is that kids like Cody who have sensory issues and seek constant stimulation (like his eye poking, biting, head banging, etc.) also find that rumination provides a certain level of self-stimulation...even tho it is often done subconsciously.   You can say it with me, "GROSS!"  But I was relieved on two accounts:  1)  he won't need the major "nisson tube" surgery they were anticipating where a band is tied around his stomach & esophagus, and 2) it is not causing damage to his body in any way.  The Dr. wants to perform an endoscopy (which is a minor surgical procedure where they put Cody under anesthesia and send a tube down his throat to biopsy his stomach, esophagus and upper intestine to make sure there are no structural abnormalities or damage.) This will rule out a hernia or other issues that could be contributing to this - altho the Dr. feels it will turn up nothing.  Cody's been on Prevacid since he was 3 mos. old so even tho he throws up 50+ times a day, there is no acid coming up with it so the chance of damage to his internal organs is small.

He also recommended an aggressive session of Miralax (laxative) to make sure Cody's bowels are consistently empty (constipation is a common issue with neurologically impaired kids.)  Constipation can make it easier to regurgitate.  Other than that, he said it doesn't seem to be hurting him - so it's more of a behavioral issue than a medical one.  Can you imagine?????!!!!!!  Problem is, there are no drugs to fix it...only attempts to "distract" him after eating so that he doesn't seek this self stimulating.  The Dr. said that as Cody grows developmentally he will begin to need self stimulating activities less and less - as he's able to run, climb, feed himself, etc.  Right now, everything kind of happens "to" him.  But when he's more able to make choices in the world and can develop skills that give him more sensory input, he'll rely less and less on self stim.  Although it's a bummer (and very sad) that he's doing this behavior, I'll take it over reflux any day of the week!  Especially with surgery that was breathing down our necks.  Rumination is also brought on by stress (either good OR bad stress) so this move no doubt exacerbated things.  So there ya go...that's what's wrong in a nutshell. 

Now I'm an expert on one more crazy illness.  But I can say 2 of my prayers were answered - no surgery - and this isn't seeming to damage him internally.  It's simply gross, disgusting, messy, and kind of sad to watch.  Thank you if you found time to pray for him - it worked! 

Speaking of stimulation - wouldn'tchaknow that right now Cody's in his play yard laying on top of a vibrating toy and has a vibrating toothbrush in his mouth at the same time??  This is a child who CRAVES input ALL the time.  Sometimes I think strapping 100 vibrators to a vest and letting him wear it all day would finally give him the sensory input he needs!  But for now, I'll settle on giving him a bath and letting him obsess over the running water.  This has been an exhausting day but a productive one.  My little guy is a puzzle and every day I seem to be able to put one more piece in place.  I'm glad for that. 

And glad for friends like you!  With love, Shawna