Monday, August 10, 2009

Calling Team Collin

This blog is so helpful in allowing me to process things as we face them and allowing all of you to keep up with Collin at your own convenience; but, I'm also hoping that it will be something we can share with Collin one day. It's a unique way to record not only his story, but your participation in it. So, every once in a while, just post a comment - even if it's just to tell us that you're reading. It is great for us so we know who is following us and one day Collin will be able to hear messages from all the wonderful people who were pulling for him this whole time. (I finally fixed the comment function so anyone can post - just write your comment, click 'Post', choose 'Name/URL', and type in your name.)

I spent a lot of time on the phone with the neurologist today. They don't think that the B6 caused the spasms, rather that we hadn't adjusted his Topamax to match his weight and the B6, by making him more alert, triggered them. Maybe so. We're going to get him stabilized on this higher dose, then reintroduce the B6 and see what happens; we got such good results in terms of opening his eyes and interacting that it would be worthwhile to have him on it if there aren't any adverse effects.

Collin stayed awake more than usual today, which means that we got to do more of our therapies than we have been recently - maybe that's why he stays asleep so much. This is a picture of him 'waking up' after what I'm fairly certain was a fake nap while I was trying to get him to practice rolling over.

11 comments:

  1. Yay! Way to go Collin! If I had a bunch of therapy waiting for me, I think I would pull a fake nap too. :)

    Keep up the good work Collin (and you too Annie & Kyle). Praying for the whole family and that you find the right cocktail of meds to get the spasms under control.

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  2. In case you couldn't tell from my incessant commenting, I'm following ;)

    Also, I got the weirdest text message from Collin today. It said, "My mamma is a sucker! hehehehe"

    Mischievous little dude.

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  3. I still think is was the correct choice to stop the B6. While it might not be the cause of the spasms, Collin was definitley having more of them. Stopping them was most important at the time. As you say, the B6 can always be reintroduced once he is stablized.

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  4. Oh, good golly, he's wonderful. I weep like a leaky faucet when I read this blog - thank you for writing. Annie, you really are a wonderful writer. I'm certain Collin will appreciate what you've written about him here, but I think all who read the blog also appreciate how articulate and thoughtful you are!

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  5. I can definitely appreciate Collin's attitude. I have also been known to take a "nap" or two when I was hiding from a less than fun job (especially when physical exertion was involved :)). I'm impressed that he has perfected his technique at such a young age!

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  6. Wow, I am impressed that he already knows how to fake a nap to get out of work!!!! That never stops so be prepared.

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  7. Collin you are taking after your Uncle Kevin in the nap department. Love you.

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  8. Hi Annie,
    I'm Hannah's mom. You son is a beautiful child. What a treasure he is. Remember, the best treasure takes a lot of work to find.
    Give your husband a kiss and your son a hug.

    xxoo Janice Fischer

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  9. We love you Kyle, Annie and Collin! We think of you often and continue to pray for you. I wasn't able to see you guys on Saturday but I'm so glad that you were present to see Mm and I get hitched! Thank you for celebrating with us.
    -The Morgans!

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  10. Hey guys...I really love reading the updates about your special little man, and wanted to give you a shout out so you know I'm following. I am full of hope and love and compassion for all of you! I'm so thankful that Collin has two such intelligent, caring, compassionate, LOVING parents! Thanks for sharing your lives with us!

    LOVE!
    Sarah

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  11. I thought I share a comment for Collin about his hardworking mom. Its about all those things that by the time you can read this blog she will have knitted for you :) Which I'm sure you will love to pieces. Because they will be beautiful. Your mom used to knit during seminars in college, your mom used to knit during lunches in the school cafeteria, your mom used to knit during awesome videos during May Term! Your mom knitted through her final exams! And I think it was because she doesn't give up until its all good and fits right! Which is just to say that all those hours knitting can't just be about sweaters and blankets but say more about what it means to grab a hold of something and not let go. Which is all really to say finally, you have a pretty cool mom and you'll thank her one day for sweaters, therapies, and not letting go.

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