CONTACT ME:

If you would like to contact me, leave a comment at the bottom of the last post. I moderate all comments before they are posted, so if it has your email I won't publish it.
..........................................................................................
ALL PHOTOS ARE SUBJECT TO COPY RIGHT. DO NOT "PIN", SAVE, OR USE ANY PHOTOS WITH OUT PERMISSION, THANK YOU!

3.30.2011

REDEMPTION.

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!

3 comments:

  1. Thanks for that added tid-bit of information. As Manoah is on Generic Topamax & I had NO idea of the shortage. I was wondering why we had such a hard time a month ago on getting it filled. Manoah can only take a certain Type of Generic too. Glad that his New Neuro listened & it sounds like he is on board! We were chosen as these boys' momma's for a reason. It will all make sense in the afterlife. But until then KEEP FIGHTING & PRAYING as this is the ONLY things we can do.

    ReplyDelete
  2. Wow! Sounds like a great meeting with Dr. F! Cole deserves the best!

    PS - That's good to know about Topamax! That's the next drug they want to try Bertrand on! Thanks!

    ReplyDelete
  3. I hope you don't mind me commenting on here. I've been following your blog ever since Betsy at Kids on the Move told me about your little family. My daughter is 19 months old and has had seizures since she was 3 days old. We too are in the same predicament with THAT hospital and because of you and Cole, we are looking elsewhere for a second opinion, but in Boston.
    My daughter Kaizley has been on Phenobarbital, Keppra and Topamax, all of which caused her to have MORE seizures. Zonegran is our princess' little miracle drug and she hasn't had a seizure since September. I hope that it works well for Cole! Your sweet little family is in my prayers and am praying that Cole's upcoming surgery at the Cleveland Clinic goes perfectly.
    Thank you so much!
    Kristin

    ReplyDelete