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Welcome To Crazy For Cody |
 In late May of 2005, our dear little Cody was diagnosed with "infantile spasms" - a catastrophic epileptic syndrome that typically strikes babies between 4-7 months. He was given a 95% chance of retardation. He averaged 400 seizures a day for 8 months. Two days after Christmas of 2005, he became seizure free for 2 months. Now they're back and we are fighting to re-gain control. At almost 3 years of age, he is about an 8 month old cognitively and a 12 month old physically. This site is devoted to Cody and his heroic battle against this horrible syndrome. Will you join us in prayer for our little guy? He's the light of our lives and the most brave person we know. We live a chaotic, often desperate existence these days - but we know that if ANYONE can beat the odds, Cody CAN! Thanks for caring enough to come here and read this. We treasure the support, care and prayers of hundreds of people who stand shoulder to shoulder with us in this fight. We’d love to hear from you – click on “contact us” to send us an email.
"Forget the former things; do not dwell on the past. See, I am
doing a NEW thing! Now it springs up; do you not perceive it?
I am making a way in the desert and streams in the wasteland"
says the Lord. Isaiah 43:18-19
With love and profound thanks,
Shawna, Don, Casey and most of all Cody Graves
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Well just as I entered the last post on finding the abundance in life - I got struck between the eyes with the opposite! I've been up since 3am - so has Don. Cody began seizing at 5:30am and by 7:30am had about 15 seizures. Diastat wasn't stopping them so we called 9-1-1 and off we went to Children's. What a drama. What a nightmare. I seriously thought Cody's seizures would just continue on top of each other without break - which is when things get really scary. Luckily with a 2nd round of Diastat at a higher dose, he stopped having seizure clusters. We were there all morning - got lots of time to talk with the neurologist - who put him on more clobazam and started him on topamax. So get this - today Cody was given trileptol, lamictal, clobazam, diastat, and topamax. All in a 3 year old's little body. I tear up as I write that. All adult drugs. All at adult doses. He's never been on topamax - I hear it's awful. People call it "dope-a-max." The intent is just to try to bridge him through this spell of bad seizures this week. He's okay now - just kind of loopy.
I have no idea what's causing this seizure spike this week. He's not sick. Nothing's changed. All we can do is pray, pray, and pray some more.
love,
Shawna
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Words To Remember |
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O praying soul,
be still, be still.
He cannot break
His promised Word;
Sink down into
His blessed will,
And wait in patience
on the Lord.
O waiting soul,
be strong,
be strong.
And though
He tarry,
trust and wait;
Doubt not,
He will not
wait too long.
Fear not, He will
not come too late! " --Streams in the Desert |
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