Monday, September 14, 2009

A CC Visual Retrospective

I published a WHOLE bunch of pictures to the Bennett Vs. Infantile Spasms/Brain Tumor Folder on my Facebook page. Lots of stuff. I find on Facebook it's easier to really deal with the photo management, and the blog is best served by text with images to punch up anything I am writing about. Plus, posting them here requires a lot of formatting work to get it to 'look right'.

But I know many people who read the blog don't use Facebook, so I thought I'd share a few highlights of the trip two weeks ago to the Cleveland Clinic for Bennett's Temporal Lobectomy. SOME of these I may have posted here before, but not many. To save on size, I'm opting for the 'thumbnail scenario', so if you want to click on a picture to see the whole thing click away.





















Hope you enjoyed the look back. Hard to believe it was only a couple of weeks ago. Feels like a lifetime while at the same time feels like yesterday. But it was just one small part of a greater journey, a journey started in February that will continue probably for the rest of our lives.

No seizures yet, knock on wood, but some odd behavior issues overall. I'll go over that in some detail in another post.

But you knew that already, didn't you? :)


8 comments:

  1. Nice picture of Carter in the middle of all that. Its so nice to see that Bennett has an older brother to show him the ropes. Older brothers are worth ten times any therapy you can provide even when the are mean and nasty and want to break your toys. (I had an older brother who was mean, nasty and broke my toys....and taught me to read at the age of 3 1/2)

    Sometimes its hard to think of all that happening in the short space of time. Time moves at such a different pace for us that if someone asked me I'd say Bennett had surgery a couple of months ago.

    Less than a month ago --> 200 seizures a day
    Right now --> None

    Yes we know that anything can change and that it why we should celebrate the good things when we have them. Otherwise if things change then we will at least have the memory of celebrations to cling to.

    When Emma was born we celebrated her birthday every Thursday for months and then we celebrated every 15th and then she turned one and we celebrated once that year. Celebrate! Celebrate! Celebrate! Celebrate today and not tomorrow. You are living today after all and not in the future.

    I was so afraid to say she was SF after surgery and I wish now that I had enjoyed it more. Now I celebrate every day without seizures cause I can only deal with the present tense.

    Kick out your heels. Have cake cause 200 to none is worth more than a scary whisper.

    ReplyDelete
  2. LOVE the previous post...They obviously know EXACTLY what y'all are feeling...So good you have folks like that to share with...

    Enjoyed the photos, here and on FBook...Your boys are just SO beautiful!! I agree...It is MUCH easier on FBook...(Remember you had to help me on Blogger? You were so kind!)

    I can't imagine the 180 with the seizures....I know you must still be afraid....But every single seizure-free day is a point for Bennett!

    Cyndi

    ReplyDelete
  3. I can't believe that was only a couple of weeks ago either.

    You are right...this is just another part of the journey. Thank you for helping me realize this. This part is very difficult but I have a lot of hope that it will get MUCH better.

    ReplyDelete
  4. Doesn't the new learned behavior overshadow the odd ones?

    From what you've said seems like Bennett has changed a lot, for the positive since the surgery.

    ReplyDelete
  5. I've spoken at length to one of the residents, who spent around 30-40 minutes on the phone with me this morning, we went over EVERYTHING, including all aspects of healing, medicine and even parent support post-op.

    Blew my ass AWAY. That, AND he is going to confer again with Dr. Lachhwani to try to get his thoughts on what we discussed and to get my concerns about continuing Vigabtrin settled.

    It was really an exceptional phone call from Cleveland Clinic.

    ReplyDelete
  6. And will that help you know anything about Bennett's cancer any sooner?

    Hope so.

    ReplyDelete
  7. No. Two separate things.

    We will be setting a meeting sometime between the 13th and 20th of October to meet with a Neuro-Oncologist to deal with the Cancer issue.

    This was his post-op behavior and how it relates to his med schedule and epilepsy, I don't believe his behavior is anyway related to his Cancer, it's related to post-surgery and his previous epileptic seizures which are now gone.

    ReplyDelete
  8. I'm so happy that you ended up at Cleveland Clinic. Not just because it is one of the best in the world. But, because you deserve that kind of treatment. All parents do. Watching these behaviors can be very frightening and having a medical professional put it in context is so helpful. Good luck with the Vigabatrin question. Our neuro weaned sooner because "it never did anything anyway..." and the minute we finished the wean sleep returned to our home.

    ReplyDelete