The children's hospital is redeeming their selfs! We met with the Director of Neurology yesterday and it went so good (yep, Cole's 3rd neurologist here...but 6th one total). I let the dr know that in January we tried to get the other neuro to pull Cole's MRI up (from 10 months old) to re-check, but she shut us down. Then told him we asked for a 2nd MRI because he was older now & his brain has grown...again...she shut us down. (I wasn't rude or anything, but just needed him to know). We told him we had gone to Cleveland Clinic (he said it was in his Top 5 hospital choices) and was very respectful that we had taken him there...he asked what drs we saw, mention dr. Wylie (he said, oh she is FAMOUS!!). The proceeded to tell him what they found. He was so helpful and happy for us that we had answers. He and the drs in Cleveland will work together...so Cole will be in good hands. Instead of ACTH or Vigabatrin, he decided to put Cole on Zonegran (& keep keppra), & wean Toppamax (which is good because Generic Toppamax is in National Shortage right now till June! luckily we found another pharmacy that had one month supply left). He recommended surgery as well. He talked to us about all the things that can go wrong; death, infection, stroke etc. But said Surgery for Cole out weighs the seizures. We've prayed about this & we feel good about the surgery. he said, finding the huge malformation is the "tip of the iceberg", meaning that he may have smaller malformations they can't see that can produce seizures later. But with kids they do so well with surgery. I don't know if Cole's battle will ever end in this life, but I hope he always knows we will continue to fight for him.
I love you little "mole man-Coleman". I love it when you rub mine & daddy's arm to let us know you love us & how cuddly you are!