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!

3.15.2011

CAN COLE HAVE SURGERY?

Well, I talked to the dr today.  We are going to try one more medication (Vigabatrin)...has anyone used this before??  We will try it for 1 month...it's not likely to work (beacuse of the malformation) but they want to see him fail 3 drugs plus the Ketogenic Diet. 
We will fly to Cleveland in May (which will give us some time to do some fundrasing...5K, bake sales etc. If you have ideas or would like to help let me know!) when we get there we will do a PETscan (again) & overnight EEG...then meet the surgical team!  They will remove his Temporal Lobe & Occipital Lobe (which he will have a loss of vision, but hopefully the brain will re-route it's self so he can see).  The dr said the surgery is definatly a "Leap of Faith"....becuase you just never know.  We don't exactly have a choice since nothing will "fix" his malformation.  And, our "Leap of Faith" hasn't ever led us astray!

6 comments:

  1. Many prayers for Cole, you and Adam. You guys have been through so much. Please let me know if I can help in any way for fundraising.

    ReplyDelete
  2. Hey! That is great news...I am so happy for you guys! I would absolutely LOVE to help out in raising money for you guys, let me know how I can help :)
    Love you

    ReplyDelete
  3. Oh my gosh I am so excited for you guys you have no idea, ok maybe you do;) let me know what I can do to help with the fundraising and I will get you those numbers soon.

    ReplyDelete
  4. I would love to help you with anything you decide to do for your fundraisers. Let me know what I can do. We are praying for you. Cole is one sweet little boy. I love that he will let me hold him!

    ReplyDelete
  5. HOORAY HOORAY HOORAY!!!!! Surgery was the best thing that ever happened to our family and I hope it will be the best thing that ever happened to you guys. That said, I know how scary it can seem. I remember the night before the surgery saying to my husband, "I wish we could just fast-forward our lives 6 months," because we knew it would be best for him in the long-run but the short run was really scary. Now it has been 4 1/2 months since the surgery and life is better than we ever could have imagined.

    Please make a website where people can donate and let us know what your fundraising target is.

    When will you be going in May? We're going to be there May 2 and 3 for John's followup and maybe we'll be there at the same time you are!

    -Ashley

    ReplyDelete
  6. WOW! They called you right away! How fantastic to know you have another med option and a surgical one! Cole is still young enough to have a very good prognosis! This is nerve-wracking and exciting all at the same time!

    (I'd like to point out the ridiculousness that at CC they can get Cole a thorough work-up, discuss him with 60+ experts, and get him in for **major brain surgery** in less time than it would take for his EEG to get read at the hospital-which-will-not-be-named!)

    ReplyDelete