Tuesday, April 13, 2010

Slacker

SOMEbody's been slacking on the blog.

I'm pointing at Collin.

We've had a surprisingly delightful week, despite the fact that Collin now has seven teeth coming in at once and likes to stay up late at night talking about it. But it did take a while to recover from this most recent stint of seizures and it's only in the past few days that I'm starting to feel like I'm crawling back out of my hole. Training for our 5K is going really well. I overcame my knee injury with some good shoes and some coaching from Collin's Aunt Tess and I think I will definitely be able to make it through without throwing up or dying. So, that's good.

Collin is also at the very end of his Keppra wean. I know it's not what a lot of people would have done, but we continued Collin's wean throughout his recent seizure episodes and we feel really good about that decision, because the seizures came under control with a slightly increased ratio and no more meds. We feel like we've seen a big difference in how vocal and interactive Collin is. It didn't take long after the seizures passed for his new laugh to come back. We had only been able to get laughs with the same old bulb-syringe-in-the-mouth trick, but last night I was rubbing his head after a long walk (on which he sang/talked/yelled from beginning to end) and this is what happened.

Back in the Saddle Again from Annie Kratzsch on Vimeo.



We're going to give Collin a while to get used to being off of Keppra before we start weaning the clonazepam and we're continuing to tweak his diet to make it more reliable and digestible. We're also keeping up the best we can with his NACD program and have seen great improvements with his eye control and rolling skills. He now does most of the work himself in our rolling exercises and has even started trying to move (albeit very slightly) when he's laying on his tummy. Collin has also spent a lot of time out in the beautiful spring weather, mostly barking orders at me and Kyle while we work in the yard.

9 comments:

  1. ADORABLE! My goodness, I teared up watching that! :) It was so beautiful!

    We had a bad EEG day, so that video was the perfect remedy. :)

    I am glad that the fewer posts were because y'all were busy with good things!

    Give that little man some loving from me! :)

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  2. Can't wait to squeeze that sweet little man in just a few days! Glad to hear that things are well. ;) We love you all!!!!!!

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  3. Loved it from beginning to end!!! My favorite part about the whole video is that he is laughing so much he can barely get a breath in there! That last part of your comment about Collin "barking orders" at you and Kyle while you're working in the yard made me laugh, laugh, laugh. That sounds just like something you would have done at that age, Annie!

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  4. Being boss is tough, but somebody has to do it!Absolutely adorable video. Glad the Keppra wean went well.

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  5. I've got it! I've solved the mystery of why Collin likes Nicholas so much - Nicholas does the EXACT same thing when I scratch his head! ;)

    Also I sense an inconsistency with Collin's newfound chattiness but apparent lack of blogging...I think someone else is to blame.

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  6. that video is just too darn cute! Glad you had a good week!

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  7. I like listening to you laugh in the background too. You make a good pair. I can't imagine running that far without throwing up and dying, so I'm mightily impressed :)

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  8. You are great! What a beautiful, strong and brave little guy. We didn't do well with Keppra either. It made our son's seizures slowly become longer and longer in duration although it changed his seizures from tonic clonics to complex partials (not as violent). It took us 9 months to arrive at our Keppra=bad seizures decision and another 9 months to convince the Neuros. Finally, Noah had a 3hour seizure, almost died and as I bawled by his Pediatric ICU crib, I looked at the Neuro team and said - NO MORE!
    Our Ward held a fast the next day. The following morning the Neuro Team finally agreed to support us in the Keppra wean. All seizures since then have been under 2 min. With the Diet we have about 90% control.
    If you feel strongly about weaning a med - Go with your feelings! You are doing the right thing. Hang in there!
    Cathy
    Noah's Mom
    www.ketokid.blogspot.com

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