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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.| may 29, 2008 |
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Cody is doing much better - hasn't had even a small seizure since 7:30am yesterday. Whew. But this tends to happen this week - he'll be great for 2 days, then crash. I felt like I the meds would never end this morning now that we added clobazam and topomax for a bit. The only thing I notice side-effect wise (so far) is he's a bit wobblier. We'll see how this new drug cocktail works. It's short term so that's nice. He's back in school today which is nice for both of us! He had 4 days off because of school conferences last week and I kept him home tues. So this is his first day back in 8 days. For 8 days straight he was home - with me - nonstop. Yikes. I'm glad I survived. It's nice to have some down-time and to be able to spend some quality time with Casey. Shockingly, even yesterday after being in the ER all morning and after getting extra drugged up, he did great in home ABA therapy! That kid is a wonder. He somehow manages to break through the haze of seizures and meds - and perform!! He SO wants to learn and communicate - it is amazing to see his little spirit rise out of the ashes of a day like yesterday. I got this touching email from one of Don's good friends from Vancouver today. What a wonderful thought. Thank you to our friends who keep track of us and lift us in prayer. We love you all.
Don and Shawna, Cody and Casey, That's it for now, love to all! shawna |
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