Wednesday, September 16, 2009

Bennett Pre and Post Surgery Video

Haven't showed some of the video from the Cleveland Clinic trip. Let a few of the movies I took up at Cleveland Clinic and back home lately load up overnight to YouTube. Always takes forever and slows yer machine to a crawl, so it has to be done that way.

Anyway, here they are...

The Night Before the Surgery

Bennett was up early, like 4 AM or so, which was fine cause we had to be at the hospital at 6 AM for the surgery. Note the feducial markers which he did not try to remove at all. He was having a blast. What is interesting is that we used this video (watching it on my camera and passing it around) while in the waiting room as Bennett's surgery proceeded to make ourselves feel better.

The Beginning of the End

This was the start of the last set of seizures I actually witnessed on August 27th. It was the morning before the surgery, in the waiting room. I was filming and he started to have a set. As I saw that they were growing in intensity I decided to put the camera away and just hold him. So I did. These were the last Infantile Spasms caught on video. He had two clusters post-op, one Thursday Night the 27th and one Friday Night the 28th, and none since.

Right After Surgery

A quick video I took of Bennett right after the surgery. He was in an out because of all the meds and anesthesia and stuff. But it was good to see him after waiting for 6 hours and holding my breath to see him again after letting him go and handing him over to the surgery team.

Bennett Sippy Cup

Some post-surgical interaction with Bennett at home, sutures removed. This was taken a few days ago. These are some of the good moments, where he is calmer, more relaxed. though still not very talkative, but I can live with that. But at least it is not the biting, aggressive, out of control type of thing we'd been seeing, which we are seeing a TEENY bit less of each day and that's GREAT. This is what reminds me of him prior to the surgery and reminds me that Bennett is still in there, just overloaded with input right now.

Though you can see at the end how he raises his hand as if to slap me. Sometimes he'll succeed, just out of the blue. THWACK! Gotta be frustration...he WANTS to say DADDA here, he just can't quite work it out, and this was a word he has used even during Seizure Time. It's in there, he just has to figure out how to get it out. We were warned that post surgery the SINGLE most difficult thing for Bennett will be his language skills. That will require the most work and the most effort to build for him.

Anyway, thought you might enjoy. This post is mainly for you, Mom. I know you miss him. We should Skype soon, but we just never know when he will be amenable to it. The mood shifts come and go.


  1. Thanks Ken. Bennett is one beautiful child! I enjoyed seeing his interaction with you in that last clip.

  2. Ken...Thanks so much for these...Although I had to watch several times because of the tears!!!

    And they are tears of thankfulness that your baby went through this trauma....And has come out the other end laughing and playing and loving his "DaDa"...

    LOVE it!!!!


  3. He is so damn cute! I hope things keep getting better with the behavior issues. A lot of the stuff you have been describing with Bennett are things that KC does a lot. We have some pretty big issues with I guess my point is that I know it's really hard to deal with.
    Keep trucking along.


  4. Really good video. It looks like he is trying hard to say dada and is searching deep in his brain for a way to get it out there. You are doing something smart that I think helps. Your voice is gentle. Gentle seems to help with the sensory overload. OT picked up on an interesting thing on Monday. She gets a better response from Emma right now if she sticks to one modality. By that I mean she will say more or sign more and Emma understands her so it works fine. It seems like if we cut back on the number of things she has to process the better Emma is able to handle things. Try it out. Might work for you too. You know where I was this week last year? At Emmas first Early Intervention Assessment in a state of deep denial pre IS diagnosis. Pre IS. She had a cluster of still undiagnosed simple partials in the session and everyone said there is something wrong with your child. Go back to your pediatrician and fight her. Anyway, enough about me, I bring it up to show the progress of a year. Responsive. Wanting to communicate. Understanding more than we realize. (man I have to stop cursing around her - its an Irish thing) So progress is good. I think Bennett will have a language explosion in the coming months and this time next year every other line will be "But why is that?". He's lucky to have Carter as an example to look up to. That will help him a lot.

  5. Loved the videos. I laughed during that first one. So good to see him having fun like that. Oh to be a kid again!

    The one of his last set of spasms on camera made me tear up. Those seizures are so hard to watch for me, I can't begin to imagine how hard it is for all you parents to watch.

    I could definitely see how Bennett was trying to figure out how to get "Dada" out for you in that last one though. Once he starts talking, he's not gonna stop!

  6. I finally got a chance to watch these with sound today (I am usually on the internet while Maddie is napping on or near me). Strangely enough, the way that Bennett looks like he is trying to pull up the word dada is very similar to how Maddie's speech is right now on Zonegran. It is like she is working really hard to try to get the word, but it just won't always come. I know it is frustrating, but it will come soon.

    And gosh he is just so precious!

  7. Again thank you Ken for sharing so much of this painful journey. It has been a real privilege to be allowed to rejoice with you on the good days and grieve with you on the bad days. Bennett is frequently in my prayers (and our whole church's prayers.) My daughter often reminds me at night to pray for "that little sick boy of your one friend." I know you probably don't feel like it, but you are an inspiration to watch and read. Your transparency is courageous.


  8. Richard:
    Cool to hear you in the BG of them.

    Remember...think Thanksmas!

    We have a long way to go, but thanks. I am certainly grateful that the seizures are gone for now.

    Any chance he is taking Lamictal or Vigabatrin? I've been hearing so many hings about how it affects aggressive behavior.

    I try to keep it steady. It will be interesting to see how he responds to therapy when he gets back in. I didn't realize Emma signed. I've tried since surgery to get Bennett to remember some of his old signs, but he just doesn't. Those memories are in some petri dish somewhere I guess.

    Hope so...communication is gonna be the NUMBER ONE hurdle to get over.

    It's like they are trying to access something and some thing is just blocking it. They know its there and just can't get to it.

    Thanks I appreciate that. Don't think anyone has ever put it quite that way. It's nice. You find a new job yet? I checked your LiveJournal thing you have as a link, nothing there. You plannin' on doing some blogging?


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