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Before we left Cleveland we met with the neurologist again.  Since they found a small malformation on the right side (in addition to the larger side on the left) they were quite nervous to do surgery because they can ONLY do surgery on one side of the brain, not both.  The panel of doctors felt the best thing was to try the ACTH steroids or Vigabatrin.  We decided to try the Vigabatrin.  We haven't tried Cole on it yet (this medication is new to the U.S. & we can only get it directly from the manufacture, it should come this week).  In addition, we have to see the prescribing dr & the ophthalmologist who checked him right before (you have to have an ophthalmology apt before taking this medication & every 3 months while taking it because you can loose your peripheral vision...but he can loose it from the surgery as well).  Both of the drs are in either way, we will be going to Ohio again. 

Even though having them change their minds on how they would like to proceed was a small inconvenience...we feel like this is what needed to happen.  We have 100's of people praying for Cole & praying that the drs would be guided by the spirit & be inspired on how to treat Cole.  We know they are being inspired and we also know that the Lord's hand is guiding our family.   We may never know why they sent us home to try this drug or what might have happened, possibly that this medication can slow the generalized seizures (which are seizures coming from EVERYWHERE instead of one area) so that they might be able to pin-point what area of the brain most of the seizures are coming from so they can see what side of the brain they need to do surgery on.  They are PRETTY SURE it is the left side because of the size of the malformation...but with seizures you just never know...even though the right is very very small.  We thank you for your continual prayers & ask that you continue to keep the drs & Cole in your prayers.   

1 comment:

  1. I know sometimes it feels like an inconvenience, when things get postponed but THANKFULLY the Lord knows us individually & he knows what needs to happen, when it needs to happen! Sounds like you are all taking it pretty well. I also wanted to Thank you for sharing Cole's Kissing video with us all. I sat here & bawled like a baby. It was simply priceless to witness! Hang in there, and I pray that Cole's body with respond to this new medicine.