Hi there - we had our pre-surgery appt. yesterday.  Nice guy, that surgeon.  Although I always wish Dr. McDreamy from Grey's Anatomy would walk thru the door - not some crusty old guy who seems like my grandfather.  But he answered all my questions and drew lots of diagrams.  We have some choices for surgery dates and will decide pending on how Cody's weight is the rest of this week.  But either way, it will be within the next 2.5 weeks - or sooner if he loses weight.  I have had so many wonderful emails from people who have experienced the G-Tube and also from those who just wanted to encourage me not to be disheartened.  Thank you so much. 

I have one friend who has a knack for telling it like it is.  She is a bit further down the road with an older child who has Lennox Gastaut a nd here's part of what she wrote:

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Shawna,

If I knew that your brain would listen when I tell you "it'll be alright!"...I would say it as often as need be. But realistically, I know this surgery is scary to you, and I know how it feels to dread having your child cut open. It's like they'll never be the same--that perfect stretch of skin will be forever altered.

But the truth is:  it isn't forever altered; someday Cody will have a new body, and a perfect brain, and only one "bellybutton" again. Unfortunately, it won't be on this earth, but the body he has now is only temporary anyway. It's like scratching the paint on your 1983 Toyota Corolla when you know that someday soon (in the grand scheme of eternity) you'll have that shiny new Lexus. Someday, you won't think twice about that port in his stomach.

I know how all this is. I mourned, mourned my daughter's perfectly smooth stomach and unaltered skin before the g-tube surgery. For us, it was the first time she had ever been cut as a result of this disease, and even though her brain was broken, her body had been perfect--until the surgery. For the first time, you could look at her body and know something was wrong. It was one of the hardest things.

Yet, putting that turmoil aside, the g-tube surgery brought the most peace and comfort to me since the onset of this disease. Like you, I agonized with her eating (she has oral apraxia--can't swallow when the seizures are bad), and we almost lost her from malnourishment (it happened very quickly). So on that hand, the g-tube gave me so much relief. THAT battle was over. Not that I didn't have other battles with LGS, but THAT one was over! I never had to worry about her eating again. I ALWAYS had a way to fulfill that most basic necessity. To this day, even though she has good seizure control and the apraxia only occurs occasionally, I can't bear to close up that stoma and lose that access. In my mind, the g-tube is like a security blanket that I can't bear to part with. Her surgeon has offered to close it up, but since she gets all her meds that way (and of course the "just in case"), I won't have it done. As long as she has LGS....she will have that access port. For MY sanity and peace of mind.

I hope you can make peace in your mind that you did EVERYTHING you could, and now this is a new chapter with a less difficult ending. I hope you can accept it and see the positive and breathe easier for the first time in months (years?)--knowing that THIS problem is solved. You can now save your energy for other challenges. Again, I know this is easier said than done, but as one who's been there, I KNOW it will get easier with time and you will be thankful for the reprieve from the worry, stress, and madness of eating.
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I really appreciated this take on things.  Another mom wrote me that she knows so many parents who wish they'd have done the G-Tube sooner - it so helped their children.  So we press on - and press in to the One who created Cody's little tummy and the One who said yes to this new chapter.  And we continue to be grateful for what we have - a child who is alive - and who is our inspiration. 

Speaking of 'letters I've gotten' - Check out this doosey.  If you are a special needs mom - I want you to know that comments like these are to be LAUGHED at - not cried over.  About 90% of hte feedback I get on this sight is amazing, supportive, and a total blessing.  But about 10% is from people who seem to love to point out what I'm doing wrong, what I'm saying wrong - or how my lack of faith is why Cody is sick.  For example:

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Shawna,

I don't mean to be rude in any way but I think the words we speak over ourselves and one another are powerful. The bible says words are life or death. I know the affectionate meaning for the word "crazy" but are you aware of the real meaning? By having your site include crazy and Cody, I believe you are speaking this over your son...and from what I've read, he has a lot of these things...
Crazy - Meaning and Definition
(a.) Characterized by weakness or feebleness; decrepit; broken; falling to decay; shaky; unsafe.
(a.) Inordinately desirous; foolishly eager.
(a.) Broken, weakened, or dissordered in intellect; shattered; demented; deranged.
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Can you IMAGINE sending a struggling mom that email?  Pretty much saying that I'm to blame for Cody's issues because of the NAME I picked for our website???  As a friend of mine put it, what bondage it must be to have to monitor every word that comes out of your mouth.  Furthermore, Miriam Webster's Dictionary defines 'crazy' as:   

3 a: distracted with desire or excitement <a thrill-crazy mob> b: absurdly fond : infatuated <he's crazy about the girl> c: passionately preoccupied : obsessed <crazy about boats>3 a: distracted with desire or excitement <a thrill-crazy mob> b: absurdly fond : infatuated <he's crazy about the girl> c: passionately preoccupied : obsessed <crazy about boats>

I rest my case.

Another email I received today said:

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When you put videos of Cody seizing it is very disturbing. Most parents feel more private and I would never think of posting that on the internet. 
 
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First of all, everyone I know posts videos of thier kids seizures for obvious reasons:  To share information.  To compare seizure types.  To help those who are new to seizures see what a 'tonic' seizure looks like - or what a grand mal looks like.  To show what might trigger a 'startle' seizure.  It's not like this is some voodoo mystical 'private' thing that people shouldn't have to bear to watch.  If you want to watch a seizure - do.  If it's too hard to watch - don't click 'play.'  Everyone is free to choose. 

I have learned that at the end of the day, I just don't really care what people think.  I value the opinion of some trusted friends who have earned credibility and have a relationship with me.  But as for strangers who write me with emails like above - I just shrug it off.  I actually got a CD sent to me in the mail once that was a sermon from the sender's church titled "If Your Child is Sick, It's Not God's Fault!"  So guess what that means (according to this 'friend') it's MY fault because I don't believe 'enough.'  I know some moms who are crushed by the comments of unthinking others.  I used to be.  But I get these types of comments regularly enough that I just file them away as harmless.  Either people don't think things through - or they have issues of their own - or they may follow a different 'brand' of Christianity than I do.  Who knows - before this all happened to me - I'm sure I said things that were hurtful without even knowing or meaning to!

So I share those emails in the spirit of encouragement.  If you're the mom of a sick child - there will always be those people who say the silly thing.  I think those in my folks generation have a particularly hard time with what is nowadays shared in people's 'blogs.'  What used to be considered 'private' and 'no one else's business' is blogged about for all to see.  I personally think it's good to be real.  Sure, positivism is great.  And yes, speaking the truth of God's Word is critical.  and of course, pouring our hearts out to the Lord first and foremost is key (I don't want to go to others with my 'stuff' before I've gone to God with it.)  The Psalms encourage me to be real with God by David's example. 

But I think being real and honest with each other is also okay - and part of the process of connecting, sharing each others burdens, and sharing life. 

So there ya go - just my thoughts.

with love, shawna