Oct 8, 2007

Okay you breastfeeders - help!  I'm sitting here with my boppy in hand (can you BELIEVE they named this boppy "My Brest Friend?")  It's right there on the label!  How embarrassing.  Everywhere I take it I fear people read that dang label.  But I digress....

So here's my challenge and any advice is welcomed - just email me thru this site.  Casey started out with a weak suck.  Which has led to me having a dwindling milk supply.  The left "one" is already done.  The right one is hanging in there.  But I am having to supplement more and more bottles cuz Casey gets so fussy at the breast.  I've been to Children's occupational therapist for nursing (who knew there was such a thing!) and there are no structural problems (tied tongue, etc.)  He has kind of a high palate which could contribute.  We are using super slow flow nipples & a therapeutic binky to help strengthen his suck.  I've been to the lactation consultants at Evergreen Clinic at least 15 times - they are out of advice.

Here's what a day looks like:  I try to nurse.  He either falls asleep at the breast or fusses, bats, and cries at the breast.  He tries to nurse but between his weak suck and my lessened milk supply, he just doesn't get enough.  So I revert to giving him a bottle to top him off.  Nights are better - but it's still obvious he's not getting enough milk out of me so I drag a bottle into bed with us too.  Then it becomes a vicious cycle because bottles are easier for him (altho he takes forever to finish 2 ounces even from a bottle.)

I've tried Reglan (stopped after 2 weeks from fear  - the label says you shouldn't take it if you're on seizure medicines and I run when anything says 'seizure' on it.)  I haven't tried domperidone but am strongly considering it.  I'm on fenugreek.  I've been pumping 4 times a day (all I've had time for) but the OT at Children's suggested I give it one last ditch effort and pump every 2 hours to try to get my milk supply up.

So that's what I'm doing for a couple of days (like I have time to pump every 2 hours.......)  She said that *could* increase my supply enough to give him enough milk to get him sucking properly *if* I slowly taper the bottles as my milk supply grows so that he simply has to suck harder or get no milk from me - his only option.  This is our plan.

Any other ideas?  I feel like I've tried everything!  It's been exhausting from day 1.  I feel quite proud that I've lasted 3 months as it is...but it's my dream to breast feed this baby and I refuse to give up.  That's my saga.  It's SO SO frustrating to have this problem on top of Cody's seizures.  I just couldn't be trying harder.  I'm so jealous of other moms I see who take 20 minutes to feed their babies.  For us, it's an all day endeavor.  If you don't have advice, would you consider keeping this in prayer?  Breastfeeding may not seem like a huge issue to some, but because I could never help Cody's during his lifetime of health problems, I want to do all I can to give Casey the best immune system and health through breast feeding him.  What I couldn't do for Cody - I so desperately want to do for Casey.  It's just very important to me.  Enough said.  Thank you for reading.

love, Shawna

Oct 10,2007

Hey thanks to all who weighed in on my breastfeeding woes!  I got about 15 emails on the subject - all filled with great advice!  It's still rough - I'm pumping every 2 hours and haven't seen a milk increase yet.  Still trying.

Casey is 3 months old already!  I call him Mr. Smiley Smilerson - he smiles all day long!  Wish I could catch some of his mojo!  The only time he doesn't smile is whenever he's put down - then he SCREAMS.  So he spends the day in my arms or in a front pack when he's not napping.

Cody continues to have big seizures every day.  Today he had one right before we left for autism class but he powered through.  I'm about 1/2 way thru Jenny McArthy's book.  To be honest, it's hard for me to get past all the cursing.  Most of the first 7 chapters are about her son's seizures which, of course, is interesting to me.  As I contemplate the GF/CF (gluten free/casein free) diet I'm looking for tips in her book.

Now (don't laugh) I plan on writing a book (or at least an article) one day about this journey.  I'm not sure how it will completely shake out, but the theme will be based on the scripture in Romans 8:28: “And we know that all things work together for good to them that love God.”

I'm inspired by the fact that God will redeem ALL things in our lives for good.  Even the things that seem evil, painful, trying....crushing.  He WILL and IS working them for good.  Therefore it is my responsibility to be open to that work.  It's my choosing to search for the good He is working as a result of my trial.  It is my job to focus on how He's redeeming this for good in my life and in the lives of others.

Life is full of pain and suffering, that's for sure.  That's a fact of life.  God didn't want it that way.  He wanted us to live in perfection with Him.  But we rebelled and He allowed the consequences of that rebellion.  So we live in a severely imperfect world - with imperfect DNA that allows seizures...with imperfect people that cause crime and deceit.  But acc. to Romans 8:28, even though we are facing much suffering and pain in this life, His promise is that He will work it for GOOD in our lives - and He will use it to glorify Himself.  That's the only sense I can make out of this furnace we're in.  And the more I focus on that scripture, the more I look for that good He is creating out of this mess, and the more I see it!

For instance,  someone just wrote me that reading about Cody and about our family's trials keeps their life in perspective.  She said it makes her more grateful for her healthy kids and helps her not sweat the small stuff.  That blessed me so much!  That tells me God is working this for good in someone's life!

Someone I know who is an athiest is confounded at the support we are getting from our church family.  There is literally someone in my home at least twice a week pitching in - cleaning, cooking, watching the boys.  It's love in action.  I know God is revealing Himself to this person as she sees these acts of love lavished on our family.

Certainly in my own life Cody's illness has given me more empathy, more patience, more steadfastness, more character.  It's drawing me closer to the Lord.  It's (I hope) been a witness to the Dr's and nurses who have cared for him.  There are days I just don't care what God's doing - I just want this to stop!  But in order to survive and find hope - I just have to attach myself to a higher purpose in this.  And there is one.  And I remind myself of it as often as I can.

So all that to say - would you do me a favor?  If Cody's struggle has affected you in a positive way - would you take a moment and email me about it?  I will include portions in my (someday) book - and I will bind them together in a book for our family so that on days when it is most dark - I can open that book and remind myself that Romans 8:28 is being done through this trial.  I'm not looking for compliments or praise or attention (or critique) - I want to simply know if God has brought about any good in your life through our trial.   It will bless us immensely and probably keep us going on those days when his seizures are just too overwhelming - which is pretty much everyday.

So thanks if you find time to do this.  And if not, no problem.  I know how busy life is and I'm just grateful you read this blog!

Two more days till the weekend!  Yay.

Shawna

Oct 12, 2007

Cody has had some kind of gastro bug + a cold for the last few days (now I know why his seizures spiked after being seizure free for 4 days!)  Today was a nightmare - 4 huge seizures and 2 medium ones.  Six huge seizures yesterday.  He looked like he was stoned all day.  Just in a total stupor.  Life is just SO hard when he gets sick.  His seizures exhaust me but I still had to drag him to Children's for a gastro appt. that we've been waiting for 3 month to get.  I can't believe that we have to deal with gastro issues on top of seizures + autism.  But Cody just constantly seems to have an upset gut (this current gastro bug included.)  He rolls around all night.  I told the Dr, "I'm talking about wild animal rolling - he doesn't wake up but he goes from the top of the bed to the bottom 20 times a night - often whimpering or moaning!"  I've seen this gastro Dr. 4 times about this issue.  First we started him on a laxative to rule out constipation as the source of rolling/pain.  Now we're raising the dose and adding metamucil.  If that doesn't work, we have to give him an enema 2 nights in a row.  If, after a double enema he is still rolling, the Dr. says it would rule out anything gastro because we would have eliminated any source of gas or constipation.  He said I can always try the GF/CF diet.  Cody's been tested for all food allergies.  After all those attempts, the Dr. said he would have to label the night rolling issue as a "neurological problem."  Sigh.  Can I just say that giving your little boy an enema is one of the saddest things on the planet?  We take a hefty bag and have him stand in it afterward to catch the falling you know what.

Then there was the issue of him gagging himself 10 times a day.  "Could it be reflux?"  "Doubtful," the Dr. said.  "It's probably developmental."  Sigh again.  "So sticking his entire hand down his throat and making himself barf is somehow pleasurable for him - a self-stimulatory behavior?"  "You'd have to ask the neurodevelopmental Dr. about that one."  Of Course that Dr. has a 6 month wait.  There are times Cody will be 6 inches away from me just standing there looking at me innocently - then he'll lift his hand up and in a flash, it's down his throat and his whole face is red while he gags on his own hand.  Then it's "clean up the vomit" time.  It just stupifies me that he'll just stare at me while he does it.  And it's so hard to see it coming.  You literally can't turn your back on him for a split second.

So many issues.  Biting.  Barfing.  Eye poking.  Masturbating.  Pounding his fists on his head.  Pinching himself.  Rolling all night.  Seizing all day and night.  He's taken to slapping me in the face whenever I pick him up - not in a malicious way - he just likes the sound of his hands slapping my skin.  He pinches my arm when I hold him - likes the feel of skin between his fingers.  If you pick him up and sit him on your lap, you're bound to get an elbow in the eye, a foot in the face, a finger up your nose.  He's like an octopus only he has 16 arms instead of 8.  How can one little tiny boy be so riddled with issues?  It would be a full time job for 5 people to research every antidote, talk to every therapist about the particular issue, drive him to dr. appts & therapies, work with him at home, hold him after each seizure, give him his litany of meds, keep him busy so he doesn't scream, chase him around....etc etc etc.  Can you tell it's been a hard week?

On the bright side, I have been flooded with amazing emails from people who say that our trial has affected them positively.  And I so needed that encouragement this week.  I can't thank you enough if you sent me a note.  Here are a few exerpts:

(this one from a parent who has a child with i.s. that is now seizure free:)

"For anybody who has been through what we have, it would be easy for time to take away the acuteness of our strife and the severity of the illness. But, we read your blog regularly to 1) "keep it real," 2) keep up with the latest advancements and medications, just in case, and 3) to keep up with you, so that we can respond to your prayer requests since we are too far away to come help in person (we're in Tampa).  We do pray for Cody every day, and for your family."

This from a mom of an i.s. child who is now thriving and "normal."

"Here's a few things that I have learned from reading your account of Cody's struggles:
1.  God does not give us challenges as punishments.  All things really do work together for our good.
2.  Faith sets you free--I've never met anyone who is so reliant on faith and who shares that faith so beautifully.
3.  God serves us through the hands of others.  Sometimes our trials are as much for the other people in our lives as they are for us.
4.  There is a big picture, we just don't see it yet.
5.  God knows us, and loves us.  Trials of faith do not mean we are not loved.
6.  Never give up--never stop trying.

Those are the "big ones," at least.  Your blog is such a source of strength.  I read what is going on in your lives and my challenges don't seem so bad.  I see you finding light and joy in the face of overwhelming odds, and it makes me realize that I can "blast through" whatever I am faced with with grace and joy too."

This from a close dear friend:

Cody has been an absolute highlight in my life. From the moment I met
him, he earned a special place in my heart and prayers. He has such
courage and is such a happy child despite all of the craziness that goes
on in his brain. Getting to hang out with him everyday for the few
months that I did was so good for me. I started looking at things
through a fresh pair of eyes. The world can make you jaded if you let
it and spending time with the Codeman made me look at things more from
his perspective, that of God's child. He finds such joy in simple
things that the rest of us have long since ignored. The breeze on his
skin, the sun in his face, the sound of a dog barking, the voice of a
loved one.  He  notices, even when we don't the little things that
God has given us. He picks up more than people give him credit for. He
taught me to chill out and look for God's little fingerprints. I love
watching him discover new things and seeing the joy that follows.
Whether its a loving hug, his crazy giggle, or one of his yummy kisses
he has a way of making you feel special and loved.

Those are just a few of many notes I have received - each one is printed on my heart and each word will be poured over when this trial gets to be too much for me.  I pray (beg?  plead?) to the Lord that Cody will one day even be able to read these notes himself and comprehend the love lavished upon him by so many...many who have never even met him.

To Megan, Dorit, Marie, Judy, Natalia, Ardith and Jody - thank you for taking a moment to lift my spirits.  I can't imagine that my probably "too real" blog inspires anyone - but you read it anyway and claim it makes a difference in your lives.  Wow.  That must be God because I am such a mess these days I can't fathom writing anything too worthwhile!

Even during this harrowing week - He has sent me a love note through these emails.  Sometimes when I'm too blind or stubborn to see God in this - he comes in the side door through my friends and forces me to acknowledge the fact that He is still here...still working this for good...and always will be.  Thanks for the reminder.

Shawna

Oct 14, 2007
 

Darn - Sunday night.  I find Sunday nights quite a bummer.  Back to the grind.  Know what I mean?

Cody had a rough weekend - still seizing up a storm.  But Don got away yesterday for our church's "Men's Paintball Challenge" where they all play like warriors out in the woods and come home with welts the size of a silver dollar from being shot with paintballs.  He loved it.  However he did get shot 3 times by our Pastor - which I find to be an interesting report.  Aren't Pastors supposed to guard and protect their flock rather than pummeling them with shotguns full of paintballs?  haha.  Pastor Robert pulled me aside today at church and said he's available if I ever need him to keep Don in line again.  He's so funny - I love our Pastor.

My dear friend Carolyn showed up bright and early at 7am to help me with the boys while Don was gone - bless her!!!  She brought yummy bread from the Bothell bakery and spent the morning playing with Cody and Casey.  She even let me take a shower!  Sadly, Cody had a bit fat seizure right before they were to take a walk out in the brisk morning air - that stunk.  Carolyn left at 1pm and I was alone with the boys till 6:30pm. YIKES!  Suddenly I was rueing the day I'd said "Don - go have fun with the boys!  I'll be fine!"  It was hard-core craziness...screaming children, seizures, poopy diapers, etc etc etc.

I finished Jenny McArthy's book - I think I'd recommend it.  Lots of swearing and such, but it does have some good info if you're dealing with autism or any illness where your child's immune system is involved.  I read the entire thing while breastpumping!  I figure if I'm going to sit there for 15 minutes 7 times a day I could get a book in!  :)

The highlight of my weekend was going out for Mexican food with my friend Kim - Don watched the boys so I could have some alone time.  In the last 3 months, I haven't been alone without one of the boys for 1 minute.  What a treat.  It's so weird to leave this house and be "human" for awhile.  Walking around Kirkland, I felt so scummy and unkempt.  When you have a Cody in your life, things like hair coloring, manicures, matching clothes, make up - all go by the wayside.  And I was walking in a city I lived in when I was on television.  Back in those days I had weekly manicures, pedicures...my hair was always freshly foiled and I was constantly tan.  I had a great wardrobe and never left the house without make up on.  Being on that same turf with Kim saturday night...I c0uld barely remember who that former person was.  Who have I become?  A frazzled, sleep deprived, cranky mom who has gained weight from stress & drinking coke for breakfast to try to power thru the frenzied mornings.  Someone who has no patience...who battles feeling glum far too often.  Someone overwhelmed.  Who doesn't even shower daily for lack of opportunity.  Someone who only leaves the house to beat the same path to therapy classes 5 days a week or to my only other outing - Children's Hospital.

Yet - I think from God's perspective - I'm oddly more beautiful than I've ever been.  That's what I try to hang on to.  I'm sure to Him, I'm finally free from the trappings of "self" -- from being so overly focused on my looks and career.  So overly focused on ME.  Each day that goes by nowadays I'm forced to be more and more reliant on Him to get through the day - which is just what the Lord would want for our lives.  And on the days I'm flat on my face in tears - feeling the crushing and the darkness hanging over me - I imagine He's probably saying "finally my beloved...you are empty of self and at the end of you...finally I can do my work in you."  It's odd that when we feel our worst, often in God's economy we are at our very best.  So as I made my way through yuppy, gorgeous-people Kirkland last night -- I reminded myself that altho I feel scummy - the truth of the matter is I'm a survivor.  I'm pressing on.  I'm pressing in.  I'm alive.  Despite the blows - I'm still standing.  I may have a few more pounds on me. I may not look so hot.  But my insides are becoming more sparkly than ever before in my life.  And that's what God values.  I have a real relationship with Him now - one where I can get mad at Him and we work it out.  One that's deep and survives the trials of my highs and lows in faith.  My life is not superficial in any way anymore - like it was in the past.  I have some gray hair that I just can't keep on top of because I can't make it to a salon.  I have some wrinkles forming that will never know the touch of moisturizer or wrinkle cream.  I wear flat comfortable shoes instead of the heels that now sit idle in my closet.  And instead of going dancing or for cocktails in Kirkland - this season of my life I meet with a friend at a Mexican restaurant and we discuss things that matter.  We encourage each other.  She doesn't notice my gray hair or wrinkles - she notices the sparkly insides.  And instead of being on television - my full time career is named Cody and Casey and that's what's meant to be.  I would never have chosen this trial but it chose me.  And because of it I am not the same.  And come to think of it, I wouldn't want to be.

This article sums up what I'm trying to say - it's by Rod Hemphill

Malachi 3:3 says: "He will sit as a refiner and purifier of silver."

The story is told about some women in a Bible study who were puzzled by this verse.
They wondered what this statement meant about the character and nature of God.

One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study.

That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver.

As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.

The woman thought about God allowing us to be in fires of life, then she thought again about the verse that says: "He sits as a refiner and purifier of silver." She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined.

The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.

The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?"

He smiled at her and answered, "Oh, that's easy -- when I see my image in it."

If today you are feeling the heat of the fire --whatever your troubles may be, remember that God has his eye on you and is refining you until He sees His image in you.

Evidently the trials of life are going to conform us to something other than what we are. We get to choose only whether we shall be conformed to the dead-end attitudes and character of this world, or whether we shall be conformed to the image of Christ.

My favorite part of that article is when the silversmith alludes that he watches the silver (me) the entire time it's in the fire - making sure it isn't left in 1 second longer than it needs to be.  It reminds me that God allows this trial - these seizures - only as far as He allows it.  Not 1 step further.  Cody won't have 1 more seizure than God allows...or 1 less.  He IS in control.  He IS watching me, Cody, Don...He has His eye on the fire and won't let it go one second too long.  Do I trust His timing?  Probably not.  But I want to learn how to.  But the truth is, only He knows when to remove me (us) from this furnace.  Only He knows when the time has finished and He can finally see His reflection in me.  Do I trust Him who holds me over this flame?  Do I surrender to His refining fire?  I want to.  I'm trying to.  Some days are better than others.  But every day I know one thing - this fire won't kill me.  If I allow it, every cross is for my prophet.  This fire has burned away my make up, my wardrobe, my perfectly foiled hair...but it's also burning away who I thought I was and replacing it with who I should be:  someone who has the privelige of knowing a little boy who is a walking miracle.  Someone who gets the honor of tip toeing into a bedroom in the morning to a boy who seized all night but still wakes up with a sunny smile and a huge hug and giggle for mom.  Someone who has her days filled with little boy curls and newborn babbles.  Who gets a vision of bravery and purity every time she sees her son battle through another life robbing seizure - only to come out on the other side and tackle the rest of his day.  Who needs a career on television?  This is real life.  It's messy.  It's painful.  It's hard.  But it's mine.  And it's meant for me.  And God's working it for my good.

love, Shawna

Oct 16, 2007

What an amazing day yesterday was (monday).  Cody only had 1 seizure -- but even more than that -- he was so alert, connected, happy!  I don't know how or why but he was just such a dream.  No negative behaviors.  No craziness.  Just very plugged in and aware.  He did great at his autism class.  It was just so wonderful.

In the past I'd have spent the day telling myself, "this is nice but it won't last" or "just wait...tomorrow he'll tank again."  But this time I decided to simply love and enjoy it with abandon.  Because truth be told, there was a horrible day around the corner (today) so all the more...I need to embrace the good days and live in the moment.

Today he had 4 seizures within about 1/2 hours time.  I had to give him a tranquilizer.  He was dopey, tired, zapped all day - even before the seizures.  He's just so darn different from day to day.  I'm pledging to enjoy whole heartedly the good days instead of being jaded about them.   And I'm choosing to be grateful that yesterday was beyond awesome.  My little boy was so happy.  His autism teacher called him a Rock Star.  Haha.  So yay for Cody - he had a great day yesterday.

I'm off to bed - I'm so tired lately.  Casey wakes up for a feeding every morning between 3:30-4am so that's when my day starts.  Don gets up at 5am and hands Cody over to me so by the time I'm done nursing Casey - I hear Don in the shower and I see Cody starting his morning 'roll' fest where he rolls all over and sits up 4 or 5 times till he gets up for the day about 6:30.    Yawn.

Happy hump day to you all - 3 more days till the weekend!

love, Shawna

Oct 19, 2007

The last few days have been full of hard core seizures.  Darn.  And Cody's negative behaviors have been flaring out of control.  I think he tried to make himself throw up at least 25 times today.  It's SO frustrating to keep pulling his hand out of his throat.  And when you don't catch him in time....all over the carpet...all over him...whatever toy he's playing with...sometimes all over me.  Needless to say I spend lots of the day scrubbing carpets, toys, and doing laundry!  Today was just so tough in this regard.  I just don't understand what he gets out of this habit.  And I hate it so much.  His therapists say the same thing, "redirect him" - which means when he starts the throwing up mode - redirect him to something else that interests him.  But this only lasts for a few minutes and he's at it again.  The worst is when he does it in the car and there's just nothing I can do about it.  I carry extra clothes with me everywhere because sometimes we show up for an appt. and voila...he's covered in barf.  YUCK!

I have been conversing with his neurologist - I'm so so so glad that he is emailing me regularly.  I can't tell you how much easier that makes life for a frenzied mom.  I don't know WHY all the neuros don't do this!  It saves me having to relay complex messages thru his nurse who boils my multi-layered questions down to a few sentences.  And her response from the neuro always raises a new set of questions.  It makes so much sense to cut out the middle man and email him directly - saves him and me time!  So kudos to him!!

Here's our latest dialogue.  At question is doing a prolonged in hospital EEG to see if Cody's seizures are for certain coming mostly from the right hippocampus.  If so, Dr. Chugani in Detroit says he would be a surgical candidate.

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

Dr S., I want to go ahead and schedule the prolonged EEG.  I assume we should hold off on the trip to Cleveland until after the EEG & potential surgery question is answered?

Also how high up on lamictal should we go?  We are at the 40/40 mark.

Thanks,
Shawna Graves

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

Mrs. Graves,

Here are some photos I just got back from Casey's newborn photo session!  TOO cute.

Oct 22, 2007

Hi there - well we had a pretty swell weekend (if you don't count the seizures.)  One friend offered to come over Saturday to watch Cody so Don and I took Casey to Babies R Us and Toys R Us to make some purchases we've been meaning to get to.  I'm turning our garage into a play space for Cody for the winter's rainy days and we're going to buy a slide!  I already have a few sensory bins out there full of beans, rice, pasta...he LOVES them.

Then Sat. night a friend was brave enough to invite us over for dinner -kids and all!  She was so sweet - she had childproofed the living room by putting pillows over the fireplace mantle - little did she know her big screen TV was Cody's favorite thing to demolish!  We managed to keep him from banging on it, tho.  She had a nice, fancy turkey dinner made to be eaten in her formal living room with china and everything - and wouldntchaknow?  we forgot the stinkin' high chair!!!!!!!!  IDIOTS.  But it takes an act of God to get out of our house with both boys and all of Cody's extras - we had to bring all his meds, supplements, laxative, PJ's, etc.  So I'm actually not surprised that we forgot the high chair.  We improvised a bike trailer from their garage and wheeled it up to her formal dinner table - quite funny.

Sunday I stayed home from church because Casey had kept me up all night fri & sat night.  Then another dear friend surprised us by bringing dinner over!  I'm telling ya, no one has ever had so many amazing friends!  So we dined on home made chili, corn bread and chocolate cake while Don watched his beloved Steelers lose.  So those things were great - the seizures were ever-present - but that's kind of status quo for us.

Cody has a MAJOR development happening, though!  We're introducing PECS (picture exchange communication system.)  It's a common augmentive approach to communicating for those kiddos who aren't verbal.  So the inital goal is to get the child to associate a photo with an activity.  So we have photos planted all over the house - a photo of his stroller and our car are hanging from the doornob and every time he goes out - we show him the photo of one or the other.  We went from just showing him the photo to having him point at it.  Once he mastered that, he is now learning to reach out and grab the photo and hand it to me.

We have photos associated with lots of activities planted all over the house, and the goal is to get him to grab the photo and hand it to us to make a request.  For instance, on his high chair tray is velcro'd a little square photo of a cookie.  We've been working for about 1.5 weeks on getting him to pick UP the little square and hand it to me (he had already mastered pointing at it.)  For awhile he just ignored it.  Then he'd look at it but just flick at it.  But after a million times of me (or one of this therapists) putting their hand over his and modeling how to lift the photo up and hand it to me, HE GOT IT!  I'm proud to say that 10 times out of 10 at lunch today --- he requested a cookie by picking up the little velcro square with a photo of a cookie on it - and handing it to me!  I WENT WILD!  That's so huge for him.  I was so excited I took a video of it and hope to post it on this site.  But my lame technical expertise keeps me from posting cool photos and videos.

So anyway, the next step is getting him to "differentiate" between photos because right now all he understands is that he has to hand me something to get a toy or a cookie or whatever.  Next he needs to understand what it's a picture OF.  So ultimately, this will empower him - so that if he's in the playroom and wants to go on his trike - instead of just standing there and screaming while I try to figure out what he wants, he'll be able to walk up to a sheet of different photos, scan them, and grab the photo of the trike and hand it to me.  He's been so frustrated by not being able to communicate his needs, this will be such an outlet for that frustration when we get further along.  Of if he's hungry, I can walk him to the picture board and he can take off a picture of a food item and hand it to me.  Cool, huh!  I'm so proud of him.  I had mommy tears in my eyes today at his autism class - he was on a swing and when they stopped him, he picked up the little velcro photo of a swing that was attached to the swing, and he handed it to Jill, his therapist.  There were 3 therapists working with him at the time, Jill, Dan (speech therapist) and Dan's assistant.  All 3 of them went bonkers.  It was so cute.

So in the midst of seizures, crazy behaviors, no sleep, and such....God has broken through as He always does with a fantastic little boost for me just when I needed it.

love, Shawna

Oct 25, 2007

Hi there - don't have time to write much.  We had to give Cody diastat (rectal rescue med) tonight because he had 5 hard core seizures in 6 hours.  Please pray for him.  He was having such a great day and them - boom - seized like crazy.  He's passed out right now.  He's not sick in any way so I can't imagine why this is happening.  We are still raising the lamictal - but it's not looking like it's helping.

On a lighter note, I added tons of new photos to the photo gallery.  Check out 'Casey's Corner' and 'Cody 2007' if you're interested.

Must go - thank you for your thoughts & prayers,

Shawna

Oct 26, 2007

Okay - I'm really getting technical now!  I just learned how to upload videos onto my blog so I'll begin that shortly.

What a weird week.  Thurs. Cody had 5 of the "turn blue, stop breathing" seizures and we gave him the rectal rescue med.  Today - no seizures.  Go figure.  He had a great day, took a 3 hour nap, and was all smiley. I feel like Sybil (old pop culture reference.  If you "get" it - you are OLD like me!)  Don's parents are here and his mom cooked a yummy dinner and I got to take a hot shower and stay in as long as I wanted!  Amazing how much I took showers for granted!  And tomorrow I decided (since I have his parents here to help) to treat myself.  I mean TREAT myself!  For Casey's birth, my friend Paula gave me a certificate for Gene Juarez and tomorrow I am redeeming it for a massage!  Yahoo!  This place does it right - you get to wear their yummy robes - their cool slippers - take a shower in their "simulated raindrop" shower - and then step out into a "styling bar" full of hair dryers, curling irons, make up, perfume, deoderant, etc.  In short...next to reality TV...it is my version of heaven!

Speaking of reality TV, did you see Marie Osmond fall on her keister?  She passed out during dancing with the stars.  It was quite the drama.  She's alright now - said it was allergies.  I interviewed her once during my reporter days and just LOVED her.  I told her that when I was 7 I had written a poem about Donny because I was his #1 fan.  I had the poster on my wall with his purple velvet floppy hat on and his big toothy grin.  I had his albums.  I knew his favorite color was purple and he wore purple socks.  She asked me to recite it for her and I said that I'd do it - only if she promised to give Donny a copy so that I would always know that my dream as a 7 year old had finally come true.  She agreed.  I'm sure he used it as fishwrap or the like.  Oh well.  So here it is - get ready to be nauseous:

Donny Osmond is the one, he is the world's glowing sun.

He cheers me up when I am down, he wears a smile...never a frown

Donny Osmond that I love, seems to come from up above.

Gag me, I know.  Hey, I was 7!  Cut me some slack!

Okay...I'm really digressing.  By the way, thanks to Loretta who comes to my house twice a week and is my slave.  I feel like I should have a kidney removed and save it for her "just in case."  Or at the very least pay her a million dollars.  She comes over and adds the warmest, nicest touches to my home.  She brought two books she thought I would like and placed one near the chair where I nurse and one near the chair where I pump.  She folds my towels and organizes my linen closet.  She puts my medicine cabinet contents in little plastic tupperware bins.  She makes my bed which I gave up long ago.  And more than anything - she just shows up.  She's consistent.  She's serving me.  People who do this have no idea that they are the hands and feet of Christ to people like me who are drowning on a daily basis.  If you are the parent of a special needs child, please reach out to your friends and let them know you are drowning.  or treading water.  or whatever apples.  People don't offer if they don't know how bad it is.  And when the help comes, it is a balm that will sustain you.  It's really hard to be in a bad mood when there is someone cleaning your house and bringing you a Starbucks.  It's hard to be grim when someone is organizing your cabinets for you and telling you jokes.  It's hard to think life sucks when Mili shows up on your doorstep 2 days this week with a fresh home cooked meal.  If I could pinpoint one thing that has made the most difference in this furnace (other than the Lord, of course) it would be His use of friends (and even strangers) showing me acts of mercy and kindness.  It makes a difference.  It lightens the load.  It makes me feel like others are shouldering part of the pain of Cody's illness.

So back to Cody - he did great today.  I am SO proud of him.  I shared the other day that he's now successfully handing me a photo of an item he wants.  Here's a video example with Casey as his fanclub of one!  This is at our kitchen table, just the 3 of us:

Dim lights Embed Embed this video on your site

http://video.google.com/videoplay?docid=134877839864751118

What a stitch.  Today he took the idea a step further.  There he was at autism class (helmet on, of course) at snack time.  He now sits at a separate table from the other kids with a therapist in front of him, a therapist behind him, and often a therapist at his side.  Today he even went up another notch in skills.  He's been handing me a picture of what he wants (granola bar, etc).  Now they put a picture in front of a granola bar on the table...and a picture of crackers in front of crackers on the table.  At times, he actually seemed to scan the two photos and pick which one he wanted most.  This is the next level.  I am just so thrilled.

I also brainstormed with Beth-Ann and Jill who work with him at this class.  They came to my house and we discussed his eye poking and self-induced vomiting.  We agreed that arm retstraints might work.  They are typically used for kids who have had eye surgery or cleft palate surgery to prevent them from messing with the bandages.  But we've used them in the past with Cody and are going to again.  They're just little foam, soft things...the size of the sleeves on a long sleeved shirt.  And they keep his arms straight.  So anytime he eye pokes or barfs, on they go for 30 seconds.  Which will hopefully break him of the habit over time.  And they'll re-direct his attention.  I'll keep you posted as I know lots of kids have these kinds of behaviors.  I thought it was a brilliant idea of Beth-Ann's.

That's it for now - gotta go to bed and dream about my massage tomorrow!!!!!

love, Shawna

Oct 27, 2007

Hi there - Wow I had the BEST time at my massage appt!  They usher you in to a marble waiting room and give you a foot soak to start things off.  I asked her for a magazine and she brought me "Travel & Leisure" and "Vogue."  I died laughing.  I won't be traveling anywhere anytime soon and leisure...what's that?  And Vogue????  I showed up for the appt. wearing a shirt that had just been barfed on (thanks Cody!) and shoes that (in the 70's) we would have referred to as "Earth shoes."  Hahahaha.  I told her these magazines weren't quite my style and she brought me a magazine with Brad Pitt on the cover.  NOW we're talking, I told her!

Then you get to change into one of their fuzzy satin robes and slippers and get the massage.  She let me smell several scents and choose the one I wanted for the oil - I chose lavendar - my favorite!  And the funny part was when she touched me she said "wow - you are like cement!"  "yeah, I carry my 40 pound son around a lot."

Then the icing on the cake - after the massage I stepped into the steam room and then into the raindrop shower.  Not only is there a huge shower head over you (the size of a platter) - there is water spraying on you from your head to your toes from all sides of the shower!  I stayed in there 45 minutes just revelling in it.  SO nice!

Thank you Paula for my wonderful gift!  It was bliss!

Us moms with Cody-kids just have to take these breaks.  It is the only way to survive.  Today he had another horrible seizure so we had to make yet another increase on his new med which isn't working.  The following video isn't so pretty -but many have asked me what his seizures look like so here's a peek at one currently.  The bad ones last up to 2.5 minutes but this one is only about 1 minute of the mid-point of a seizure.  He is in his high chair and I video taped this for the neurologist which is why I'm not rushing to hold him.  The neuro wanted me to just videotape it without intervening.  His head is down so you don't see it, but he is not breathing for much of it and is slowly turning blue - you can hear him inhale finally toward the end.  This is a bad seizure - but more often he screams during them and shakes a lot more.

Dim lights Embed Embed this video on your site