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6.21.2011

PAUSE!?!

Ready for this? ...we weren't. They hit the "pause button" for Cole's surgery this morning. The panel of 50 doctors reviewed Cole's EEG & PETscan. They found a small malformation on the other side of his brain now.  They want Cole to try another drug which is pretty aggressive.  We will put him on it tomorrow...wait 3 weeks, if it doesn't work then then the surgery will be in "play" the end of July...yes we are going home & yes, we will come back to Cleveland for the surgery. They also figured out that he has "infantile spasms" aka West Syndrome" as well as the 2 other seizure types (absent & drop seizures). Don't let the name "infantile spasms" fool you...these are HORRIBLE, HORRIBLE seizures! Infantile spasms are considered uncommon & are one of the “catastrophic childhood epilepsy" because they are hard to stop/control/treat.  One article we found about Infantile Spasms was called "Little Seizure, Big Consequences"...which sums it up pretty good.   While we are very frustrated that we flew across the county, we feel like the drs are trying their very best.  Part of the panel of drs thought Cole should have surgery now and the other thought he needed to try another aggressive drug.  The surgeon had a meeting with us and let us know if it was "his child" what he would do.  We feel comfortable with their decision & know they have Cole in their best interest. 

Thanks for all of your Love & Support...we really appreciate it!   Keep praying for our little boy :)

4 comments:

  1. You know, this is something that I have wondered about as a diagnosis for Cole, but I am not a doctor. Our friend, Marissa, has IS. You can go to her amazing blog that her dad keeps from our sidebar. SO frustrating guys! We wish you all of the best and pray for you every day. HUGS!

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  2. wow~ Really? That is tough to be all ready and then have to wait :(
    I hope it works out soon! I have been praying alot for your family!

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  3. What?! Oh this has got to be frustrating to some level! But at the same time it seems like every time you guys work with these doctors you walk away with so much more information than you had going in. I guess that is a good thing! It is so hard to know what is best or right, but I know the Lord is aware of Cole individually, and I am certain that with all of the fasting and praying that has been going on in behalf of Cole, that the doctors truly are being guided by the Lord's hand. Hopefully when all is said and done, you guys will have a better understanding and feel good about all the steps that are being taken and what extra knowledge the doctors may be gaining by trying one more thing. Lots of love to you and little Cole!

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  4. I can't imagine what life is like for you and your family!1 You all are amazingly strong individuals..especially that handsome baby boy! You are in my prayers..I wish you all the best!! xoxo

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