Saturday, February 6, 2010

Don't Hold the Applause

So you had a few days of some chewy, moist and delicious updates and then whoosh...gone for a day or two. That typically happens after one of these hospital visits. They are tiring. They are long and draining. The day you get back you are a bit spent, and in many cases mopping up loose ends that were left undone prior to the departure from your home.

Sometimes it takes a few days to get back on track.

And anyway...sorry for the delay in the Big Recap. I understand some people were very concerned, because when it comes to me and no blogging, many times the lack of blogs goes hand in hand with me fighting the bad stuff.'d the trip go? Overall very well.

Bennett's MRI currently does not show any re-growth of tumor cells, that's very good. He will have another MRI in 3 months. The Oncology team noted something strange in the right hand side of his brain, some kind of malformations in and around the temporal lobe.

Now, I am gonna worry about that for a while...even though the surgeon after he reviewed it said 'You just can't get worked up over that right now...they read it a little too closely down there...I don't see anything in the MRI or in Bennett that leads me to believe there is a problem there.'

And I trust the guy, despite his Steelers affiliations.

So I will try to keep that out of my mind for now, and worry about it only if some kind of problem arises from there. Though I wonder if those malformations are in any way connected to his lack of communication. Only time will tell really.

It's funny...both the surgeon and the epileptologist feel the communication will come, so much so they just sort of shrug off my statements of worry and say 'It'll come.' And I don't mean they blow me off, or don't give my concerns their proper due...they just are trying to show me by example how I should worry a bit less than I do.

But I worry about shit.

But as my wife pointed out on the ride home, I have issues. She said it in a very supportive way, it was her way of saying 'Look, you had problems BEFORE the birth of Carter [source of first anxiety attacks]
, BEFORE this happened with Bennett. You had a rough life, you need therapy, you need help.

I don't argue with that at all.

As for the EEG that Bennett had, no seizure activity was seen. The final report mentioned some sort of slowing or something, but that was attributed to the areas of the brain that were simply not there any more. But there were no spikes, no hypsarrhythmia, no funky readouts. It was not interpreted as a grossly abnormal EEG.

How 'bout that? That, lemme think. Well...even Mr. Negativity here can't NOT see what a huge thing that is and how utterly super cool.

And I am. It's great.

So...are we 'out of the woods' on the possible return of the tumor? No, but Step 1 went well. Are we 'out of the woods' on the seizure puzzle? No, but Step 1 is going well, we aren't changing any of his meds and as long as that 'other area' doesn't do something funky, I don't see any reason why his seizures would return spontaneously unless the tumor comes back or the scar tissue gets really wacky, which the MRI suggests is minimal.

And of course, we are far from 'out of the woods' on figuring out how to help him make the most of who he is and figuring out who he is and what his capabilities are. That's the journey when you really just condense it.

As far as that goes, as of Monday Bennett will be starting ABA Therapy for 35 hours a week. Full time. He will be attending an Autism school, and I am hopeful that the one on one situation will be just what he needs. I will be his chauffeur. 2.5 hours in the car for me a day and everything else we have to do to make this work are SMALL prices to pay for this school. It could be a HUGE difference maker for him.


Last thing...I have been very negative of late. I'm entitled. But one thing this week has made me very, very happy. I have been saying 'Clap! Clap!' and Bennett will clap his hands and laugh. Now, for most of you parents with 'normal' kids who at one point were 2 years and 3 months old that probably doesn't sound like a big deal.

But for Bennett, it is a very, very big deal. You have to remember...this is a boy who was playing pattycake before (as my soul sister Danielle refers to it) the Seizure Monster grabbed him by the throat and choked the childhood out of him. This is a boy who was saying 'Hi Dada!' and waving to me when I came in and who now doesn't always even respond when you call his name.

For Bennett, that simple communication of performing an action based on a verbal suggestion? It is a major, major first step on the long and winding road of learning how to teach him whatever he is able to learn. For me...well, it gives me hope, something that has been in short supply lately.

I'll keep you posted.



  1. I've been checking back like mad. But I'm very into giving you your growing space I contained the worried email. I'm very proud of myself. :)

    I slowly exhaled relief as I read through everything. And laughed at Jen's summary. When you live through the guts of life means something.

    The clapping is HUGE! MONDO HUGE!!



  2. There was that word "hope".Right there at the end...hang on to that.And the clapping.Awesome.Really awesome.

  3. So, a long and stressful week. I'm glad the EEG looked good. I know after the surgery it was a real mess so its nice to see it without spikes and chaos. No sign of cancer is also good news. I have to contain my jealousy on Bennetts getting 35 hours of ABA a week. It is pretty awesome. I was wondering about the MRI. Didn't Chugani say he saw something odd on the other side on the PET? Does this correlate with that?

    Not out of the woods but the signpost is pointing out and the number of miles to out of the woods is decreasing slowly. (but decreasing)

    So glad for the clapping. Great progress. Working on that one also in my house.

  4. The clapping is wonderful!!! To follow a verbal command means so much. The comprehension is there.

    This was a really good post. And I hope this is a start of you getting to a better place. Especially with the start of ABA. I hope you will have lots of great things to post about. I really do.

  5. Clapping! Awesome developmental step. The ABA will be a HUGE helpo I am sure. I can't wait to hear how it's helping him.

    So happy about the EEG and the MRI. All great news. Austin has an abnormality on the left side of his brain. After all testing failed to identify it, the neuro's said it's possible many typical people have small areas of abnormality and no one knows they are there because there has never been a reason to MRI those people. Does that make sense? It's very hopefully nothing. And it shouldn't impact communication because speech centers are on the left.

    Fingers crossed for a smooth transition to school for Bennett... and the chauffer!

  6. Things sound good! Sometimes brain stuff is just murky--try not to worry too much. I had a very nice neurosurgeon tell me to "always look at the kid" and it's good advice.

  7. So glad that all went well with the doctor visit!

    I teared up when I read he was clapping along when you were saying it! That's huge....(ok, I just got the whole old budweiser commercial running through my head...Louie, we could have been huge)....*sigh*

    Anywho...hoping that school goes well for Bennett. I think he's gonna start making some serious strides once he's settled in.

  8. God has gifted you with writing skills
    I enjoyed visiting your blog
    God Bless

  9. Hey Ken!! Just checking in on you all. Looks like you're still "making it." :)

    So proud for the ABA. It will pay off in the future. It has helped Andrew.

    So proud of the clapping! Thanks for the smile!

    Take care!


  10. Awesome. Language recognition....I hope this week of school has helped you feel more hopeful.

  11. PERFECT...Just what I wanted to read! It doesn't sound as if it could have gone much better...I am so happy & relieved over these results...

    Dealing with these docs for so many years...Believe me,they just WON'T say something like "It'll come" unless they truly feel it will...They just won't commit...Bennett will get there...

    I posted months ago about "clapping"...Believe me, I KNOW what that means....It is one of the few "normal" things Colby can do...I know the joy you have in seeing this with Bennett...Especially since he lost it before...But now it's back...And HE'S coming back!!!

    Thanks for sharing this good news!


  12. I was so relieved to read this post. I've been out of touch for a while, so to come back and read this was wonderful!

    Glad to hear you all are taking this all in Steps. Sounds like a great way to contain your concerns and help you stay sane. And, this first Step sounds very promising.

    Even though I'm not around as frequently as I used to be, you and Bennett have still been in my thoughts.


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